This article gives advice on a range of things, including making the home and garden safer for someone with Alzheimer's disease, some explanations for their worrying behaviour and how to avoid some situations that make them stressed or aggressive, ways of helping them do things for themselves for longer, ways of communicating with them as their understanding diminishes, several games and exercises that can be done with people with even severe Alzheimer's disease, some things people caring for others with dementia can do to look after their own needs, and things that can be done if outside help is needed.
Skip past the following quotes if you'd like to get straight down to reading the article contents and self-help article.
Life is a moderately good play with a badly written third act.
Don't let aging get you down. It's too hard to get back up.
--Attributed to John Wagner
There was no respect for youth when I was young, and now that I am old, there is no respect for age--I missed it coming and going.
In a dream you are never eighty.
Everything slows down with age, except the time it takes cake and ice cream to reach your hips.
--Attributed to John Wagner
They say that age is all in your mind. The trick is keeping it from creeping down into your body.
Age attacks when we least expect it.
You can live to be a hundred if you give up all things that make you want to live to be a hundred.
Time may be a great healer, but it's a lousy beautician.
All diseases run into one, old age.
--Ralph Waldo Emerson
I don't know how you feel about old age... but in my case I didn't even see it coming. It hit me from the rear.
The best thing about getting old is that all those things you couldn't have when you were young you no longer want.
The older I grow the more I distrust the familiar doctrine that age brings wisdom.
One of these self-help books is called Learning to Speak Alzheimer's by Joanne Koenig Coste. The author says there are several new strategies we can try to make caring easier and life more pleasant for both us and the person we're caring for.
Her book's quite long; so she does advise we don't try all the things she suggests at once, or we might feel overwhelmed by trying too much in one go; so she recommends we try them out at a pace we're comfortable with. She says we can be pleased with any progress we make, even if we only do a few new things at a time.
She says that if we haven't already, we should get a proper diagnosis from a specialist for the person we're caring for, because not all dementia is incurable; there are conditions that cause it that can be treated. She says, for instance, that some conditions that can cause dementia that doesn't have to be permanent can include some drug interactions, alcohol abuse, some infections, and some other things. She says such things can lead to serious damage or death if not treated, but many can be reversed if they are.
She tells the story of someone who was convinced her mother had Alzheimer's disease, and tried to make herself ready to care for her till the end. Her mother's doctor said the symptoms were like those of Alzheimer's. But family members persuaded her to take her mother for tests at a teaching hospital, and it was discovered she had a brain tumour, which was treated and she slowly recovered, and didn't have dementia any more.
But the author says that where there is Alzheimer's, the earlier it can be treated, the more likely it is that things won't deteriorate so fast. I've heard myself that there are drugs that can slow down its progress, but that they only work if people start taking them early in the disease.
The author goes on to say that anyone who knows Alzheimer's is in their family might benefit from consulting with their doctor about whether to get tests, even if they're only beginning to notice what seem to be signs of it but which aren't necessarily, because if some family members developed Alzheimer's young, it's more likely other family members will get it. But the earlier they can start being treated with Alzheimer's medication, the more chance it has of holding back the disease for a while.
Well, there's a cheerful thought! Oh well, my husband's been tested and diagnosed with Alzheimer's already, so I don't suppose there's any hope he'll get better, unless a new treatment comes along. Still, it might be worth going to the doctor's and enquiring about any new drugs that might be becoming available.
The author says at the earliest opportunity, we should try to get financial and legal matters like will-making sorted out.
Something else she says might be a problem is persuading the person with Alzheimer's not to drive any more, since though their driving might be getting worse, it's difficult to willingly give up independence. They might be scared of losing control of that part of their lives.
Yes, that is a bit of a worry.
She recommends we could speak to our doctor about it, and ask if they'll write them a prescription that says 'No driving' on it.
She says when we first raise the matter about stopping driving with the person with Alzheimer's disease, they might argue, saying they've never had any problems before or they're better at driving than us or something. She recommends we don't get bogged down in arguments about the past or present, because it's the future that's the concern, when their abilities will decrease to the point when they'll be dangerous.
She suggests creative things we can do to stop them driving, like keeping the keys somewhere out of sight or getting into the driving seat before they do. She says if they've got a car of their own, we could perhaps put it somewhere out of sight for a while till their longing to drive fades, although that would mean deciding what to tell them if they ask where it is, preferably something that won't start an argument.
I'll have to think about that.
The author recommends we write out a plan of care for the person with Alzheimer's disease, so we're not just muddling along doing what we remember to do at the time, but can clarify a plan of action in our minds so we feel clearer about what to do, and so we can show any professionals we talk to the kind of care the person needs; and we can hopefully use it as a diary to book in some help with looking after them from relatives some of the time, as well as showing it to those relatives so they understand what the person needs help with.
She says each person in a care home will need a care plan with things like dietary requirements, medication, recreational activities they can do, and so on.
She says a care plan will have to be updated often, as the needs of the person with dementia will change from month to month as their abilities decline. So she recommends we set aside a time about once a month to think about what new things could go on it.
She says in the beginning, their needs might be so few we might not need to write them down. They might only be something like, "Going to the day centre three times a week". But she says in time, they might include any special arrangements they need when being cleaned, dressed and fed, and what kind of things keep them happy.
She says we might also have to cater to alterations in their mood. For instance, some people with dementia tend to get more aggressive in the evenings. So we might want to remind ourselves on the care plan not to invite friends around then because it might agitate them more.
Also, if they seem unhappy, there might be quite a bit we can do to change their mood, so we could plan it through. For instance, if certain situations seem to be bothering them, we could see what we can do to change them, and remind ourselves on the care plan what we discover works.
She says updating the care plan every month could be done in discussion with anyone helping us care for the person with Alzheimer's like relatives, so we can organise with them what help they can give, or whether they're still happy giving the help they are.
She says some things to look for to give us ideas on what new help we or the person with Alzheimer's might need are whether they burn food they try to cook, whether they leave the oven on after they've done some cooking, if they're not keeping themselves or their surroundings as clean as they used to, if their eating habits are changing for the worse, and things like that. She says we don't need to panic if we discover any of these things, but they'll mean planning strategies to keep the person safe and healthy.
Oh, so that's what I've got to look forward to.
I've got another book called The Selfish Pig's Guide to Caring. It isn't really a guide on how to make caring easier; it's mainly a long outpouring of lamentation about the hardships of caring for someone. I suppose it'll be good to read in the coming months or years if I want some kind of consolation that I'm not alone. It does give some advice though.
One thing it says is that it's bound to be harrowing to watch someone we used to know and love changing so it's even as if they're turning into a different person, because they're losing so many of their senses and doing disruptive things; but we can stop ourselves getting so upset if we stop thinking of them as the person they used to be and start thinking of them as just a person we have a duty to care for. The author refers to the person who's being cared for all the way through the book as a piglet. He says it stands for "Person I Give Love and Endless Therapy".
So he suggests that we think of the person we're caring for as our piglet, rather than as who they used to be.
I'll have to think about that one!
I don't do alcohol anymore - I get the same effect just standing up fast.
Old age ain't no place for sissies.
The author of the book Learning to Speak Alzheimer's says that as dementia gets worse, all the senses of the person with it can fade, leaving them confused and anxious. Things that were easily identifiable can seem strange. They can forget where they are or what time of day it is, and they can find it much more difficult to understand what's going on around them, because of how the disease is scrambling things in their brain. So they might often get aggressive as a way of trying to protect themselves from getting into situations they can't control, not realising they're not really in any danger and the person looking after them only has their best interests at heart. Not really knowing what's going on can make them scared, so they can hit out at anything that seems to be increasing their confusion. The author says there are things that can be done to stop this happening so much though. Thank goodness.
She says there are things we can do that can bring back some sense of familiarity and understanding of their surroundings to them, so they feel more at ease and can function better for longer. Painting the bathroom wall a deeper bright colour can create more of a colour contrast so it makes it easier for someone whose sight's failing to identify where a white toilet is, for example. Putting things that are particularly precious to the person with Alzheimer's and which have always reminded them of good things near them can help reassure them. Tidying away clutter that the person's failing vision might make it harder for them to identify can help them stay less anxious and confused because they won't be worrying about what it is and how to cope with it. Increasing the lighting in areas where they're doing things, and eliminating sources of shadows they might mistake for something threatening can also help.
The author says one thing that can disturb people with Alzheimer's disease in its early stages is if people won't talk about it with them, so they feel they have to bear the burden of worrying about what's going on all on their own. People might not want to talk about it with them in case it upsets them or they're thought nosy or too personal. But it can be a welcome relief for someone with Alzheimer's disease to be able to talk over their worries with someone. Feeling listened to respectfully can make them feel valued.
It can also be useful to hear the point of view of the person with Alzheimer's Disease so we know what their opinions on the matter are, especially since some professionals won't take their point of view into account but will just discuss them with others.
The author says the person with Alzheimer's might be scared to talk because they're worried they might make mistakes because of what the disease is doing to them. Some even stop talking altogether. So she says it might be helpful to build up their trust first by making small talk with them till they feel more confident they can confide their feelings and worries in us. We can think of what subjects we know they like to talk about and start a conversation about one.
The author advises we keep eye contact with them during the conversation so they can be assured we're really listening, and nod and even gently pat their arm sometimes to show them we still are.
She says if there are other people with us, it's best to encourage them to address the person with Alzheimer's disease directly rather than talking about them as if they're not there, because they might still be able to understand even if they can't talk that well any more, and not like being talked about as if they can't understand at all. People can make them feel included in the conversation even by just winking at them.
They might bring up the subject of the disease themselves. If they ask questions like, "Am I losing my mind?" or "Am I going crazy?" or "What's wrong with me?" and that kind of thing, the author says that can be a cue that they want to talk about their worries, and perhaps to have us discuss plans for managing the disease in the future with them. If they say something like, "I'm so forgetful these days" or "I think I must be going senile" or "I can't seem to think straight", it may be that what they really mean is, "Why is this happening to me?" The author recommends we could say something like, "The brain disease does that to you. Would you like to talk about it?"
A doctor might be able to have an informed conversation with them about it with them if they're a good communicator, so they could be encouraged to raise the issue with them.
Another thing that worries some people with dementia, so the author says, is if people start treating them differently too soon, as if they don't recognise the abilities the person still does have and think they need more doing for them than they really do.
The author says memory loss can cause a lot of anxiety, for carers and the person with the Alzheimer's disease alike. She says there are ways we can deal with lapses in memory without drawing attention to them and criticising or scolding or anything like that.
She gives the example of a man who'd just been called to dinner by his daughter and had got up and was on the way to the table when he saw a pretty bird eating in the garden and stopped to watch it. Then he obviously forgot he'd been on his way to dinner, and sat down to read the paper.
Meanwhile, his soup got cold on the table. His daughter, understanding that his behaviour was being caused by being only able to keep one thing in his memory at a time, just reheated the soup, brought it to him and said, "Come on Dad, let's have lunch together". Saying the word lunch reminded him of what he'd been getting ready to do before he saw the bird, and he sheepishly said, "Oh, I was supposed to do that a while ago, wasn't I?"
So the daughter had managed to get him to eat lunch without embarrassing him further because of his mistake.
The author says she was at a support group and she greeted the woman next to her who had Alzheimer's, saying it was wonderful to meet her. The woman was puzzled, obviously not remembering her, though they'd both been at the previous three meetings. Rather than pointing that out and possibly embarrassing the woman, the author took her hand and said, "It's always nice to meet new friends", and the woman relaxed and smiled. So they both enjoyed the moment.
The author says that's an example of seeing things the person with dementia's way rather than trying to make them conform to seeing things ours, when they're losing their abilities. What matters is that they're happy, not that they live up to standards it's increasingly impossible for them to live up to.
The author says memory loss can also cause people with Alzheimer's disease to find it more difficult to recognise people they've known for a lot longer, so even long-term friends shouldn't take it personally and feel rejected if they don't seem to recognise them any more and ignore them. She says it can be confusing, because sometimes people with Alzheimer's can behave perfectly normally as if they're fully aware of who those people are, but at other times, their brains aren't functioning so well and they just can't remember, and might behave strangely as well. Sometimes, they might behave as if they're not interested in the other person, but that can be because they're aware the disease is robbing them of control over their senses and they're not sure how to act any more and worried about doing things wrong.
She says if they forget who we are, it's best if we simply just tell them, reintroducing ourselves.
The author says sometimes, when a person with dementia seems to be seeing or hearing something that isn't really there, it might seem as if they've got some kind of psychotic problem, when really, it can be because their vision's fading along with their reasoning abilities and they're misinterpreting what they're seeing, and things like that. For instance, they might see a shadow and assume it's an intruder. Or sometimes they can make angry false accusations that seem paranoid, when the real problem is they're scared of something happening and have started imagining it happening and then mistake it for reality, and what they need is reassurance and help to overcome the fear behind their accusations.
Or sometimes, failing memory can make them think something's the same as it was some time ago when it's changed, and trying to insist they're wrong can lead to angry outbursts, whereas distracting them gently from what they're talking about can help them forget about it.She gives an example of how unnecessary anti-psychotic medication can be given, when really, a simple distraction technique would have worked. She says it has actually been quite common for this kind of thing to happen in homes for the elderly: A woman with dementia in a care home comments to no one in particular early one morning that she'd like to see her mother, who's actually been dead for years. A nursing assistant takes her by the hand and sympathetically explains that her mother's dead. The patient might say she saw her only that morning, and only grow more agitated and insistent that her mother's alive the more the nursing assistant gently tries to reason with her to persuade her her mother's dead. The nurse becomes more insistent, and tries to take her over to a calendar on the wall to show her the date when her mother died. Eventually the patient with dementia might get so upset because she believes she's being lied to that she might resort to slapping the nursing assistant, whereupon the nursing assistant might call for help from other staff members to calm the patient, and the woman might be tied to a chair for hours in a place where the nurses can watch her because they're worried she'll do something violent again, and given an anti-psychotic drug.
The author says this kind of thing has actually been quite common in many care homes, where staff were told to correct anything a person with dementia said that didn't fit with reality, to try to get them more grounded in the real world, remembering where they were, what they'd eaten that day, what day and date it was, and so on. But for someone who's lost their sense of reason, being reasoned with isn't going to work. What's likely to happen is that they'll get upset because they're being contradicted and it might feel like a loss of control. They'll think they're being lied to. Getting aggressive is simply a primitive form of self-protection against what they see as being told something they really don't want to hear and don't believe. With language skills and reasoning ability failing, their responses might be governed by pure emotion. So, for instance, whereas before, being told a lie might have led to a sharp-tongued rebuke or an analysis of just why it was false, with those abilities gone, primitive instinct might take over and a feeling of fear and anger might lead to the only defence left, aggression, to try to stop what's going on.
Why try to make someone come to terms with reality when they'll likely have forgotten the whole conversation anyway in five minutes?
The author of the book says things can easily be handled in a way that will have completely different consequences, keeping the patient with dementia calm. If people understand that the patient may have lost their ability to reason, and respond to them by looking at things from their point of view and thinking about how things seem to them, there will be no need for a confrontation. For instance, if that patient asks to see their mother who's been dead for years, Here's another way things could go: The nursing assistant could simply say, "Tell me about her". The patient might then start reminiscing about nice memories, and the nursing assistant can ask more questions to encourage them. They can use that as the perfect opportunity to distract the patient. Because of their short-term memory deficiencies, the patient might forget all about their wish to see their mother. So, for instance, if the patient says their mother cooks well, the nursing assistant could ask what are the nicest things she makes. If the patient says, for example, that she makes lovely pies, the nursing assistant could listen for a little while and then say, "That sounds yummy; it's making me hungry. How about you? If the patient says she's hungry too, the nursing assistant could say, "Shall we go off to breakfast? I'll find one of your friends so you can chat to her." Before long, the patient's happily chatting away to her friend, having forgotten about wanting to see her mother. And the situation has been resolved perfectly calmly without the need for drugs at all.
That kind of approach recognises the feeling of loneliness and need for care and attention that can often be behind a patient's request to see someone they used to know, and responds by taking care of that, rather than discussing the unreasonableness of the actual request. It also prevents the patient feeling a sense of failure at their diminishing abilities because it doesn't show them up, so another source of possible anxiety and agitation has been avoided.
The author says that one advantage of that kind of approach is that it requires intervention from less staff members and less time. So it's cost-effective and time-efficient, in an era when nursing home staff complain that there are never enough staff and not enough time to try new things out.
She says we can respond similarly if they mistake people for people they knew in the past or think they're in a different place from the one they really are in. Instead of just reminding them of reality, we could encourage them to talk about that person and place, if they seem to want to, and then gently start talking about things going on in the present to take them out of their day-dream and help them focus back on things going on in the here-and-now.
But if they become unhappy while they're thinking about the past, we can tell them we realise they're unhappy and try to distract them with something nice, for instance giving them something to eat. We can try to work out what triggered off the unhappiness. For instance, if they mistake their reflection in the mirror for another person, perhaps a parent, which can happen as the disease distorts their perceptions, and they become upset, we could say we understand that it's making them upset to see their mother, and then take the mirror away soon afterwards so they don't get upset by looking at it again.
But the author says that if the person keeps going back in their mind to the past, it might mean they'd like to talk about it. The conversation doesn't have to take place then and there, but it'll be something for us to consider.
The author explains other reasons why people with dementia might get aggressive, and suggests similar solutions that could calm them. She says as the disease gets worse, things that seemed familiar will begin to seem strange, because all the senses deteriorate. The person with dementia might have failing vision so they find it more difficult to see things like depth, motion, colours and contrasts. They might also be scared because their thinking abilities and memory are fading. Understandably, this can make a person confused and fearful, and they might very well start having aggressive outbursts quite a bit, as a primitive way to try to ward off things they can't understand and that seem threatening or worrying. If they've lost their language skills, they won't be able to explain what the matter is. And if the parts of the brain that allowed them to think logically no longer work, it'll be far more difficult for them to try to work out what's really going on.
She gives the example of a woman caring for her husband with Alzheimer's. She might one day hear a scream from him and a crash, and go into the bedroom where he is, to discover him waving his walking stick and beating the curtain, having smashed the nearby lamp. He might be shouting something like, "Get out of here, you lousy bum!" His wife might be able to see perfectly well that there's no one there. Again, this might seem psychotic behaviour from him that needs medication. But it might not be at all. He might have just seen something he mistook for an intruder because it made him afraid. His wife might be able to calm the situation by saying something like, "He's gone. I saw him running across the lawn". That might reassure her husband and he might begin to calm down, whereupon she can suggest he comes to sit on the bed with her and distracts him, perhaps by starting a conversation. It might not be long before he's falling asleep, and she can lift his legs up and put them on the bed and let him drift off.
If she looks into what had upset him, she might realise it was perhaps the shadow from their neighbour's flag moving across the window. Thus, rather than the hallucination being a result of brain dysfunction that makes people more likely to hallucinate, it might actually have been the simple loss of ability to think of possibilities as to what was causing what he could see, along with vision loss that makes things less clear. His wife might stop the same thing happening in the future by replacing the curtains with heavier ones that don't let any light in from the outside, and closing them at sunset.
The author gives another example of when someone seemed to be having a psychotic hallucination but was really just trying to stop something happening in the best way they knew how, given that their dementia had stopped them being able to reason things through and perhaps altered their vision so what they were seeing was less understandable to them. She says a man invited guests around to his house in the late afternoon. His wife with dementia sat on the sofa across from the window while her husband made tea. The visitors arrived and they all sat down and chatted. Suddenly, the wife got up, walked across the room and shoved one of the visitors hard on the forehead, yelling, "Stop it! Stop it!" Her husband led her out of the room. The visitors left, while he apologised.
At one time, the man would have just put his wife's outburst down to the Alzheimer's disease. But now he'd learned a bit more about what can trigger off reactions like the one she'd had, he looked for the cause. He went in the room and sat where she'd been sitting. The sun shone directly into his eyes, coming from the place where the visitor had been sitting. So he realised she'd been trying to stop it doing that in the only way she knew how. It had probably looked as if she'd been hallucinating that the visitor was doing something bad. But really, she was just trying to beat the sun away, not knowing any more how else to handle the situation.
The man solved the problem by closing the curtains. It allowed both himself and his wife to become calmer.
The author says some angry outbursts can be caused by a person's frustration at not being able to fit in any more because the disease is robbing them of their faculties. She says rather than scolding them for any outbursts, which they probably won't be doing on purpose just to annoy us but because they've lost their ability to communicate sensibly, or rather than even just reminding them of what happened, which might embarrass them and make them feel ashamed, when they couldn't really help what they did because they'd lost their ability to communicate in more sensible ways sometimes and emotion just got the better of them, we can think about and plan what we can do in the future to stop such a thing happening again. If we can try to understand and see things from their point of view, it can be easier to think about what can be done.
She says sometimes when people with dementia seem to be having hallucinations and delusions, they're really caused by over-emotional responses to worries they have. They might worry that something will happen, and then imagine it's started happening and mistake their fantasies about it for reality, so they'll insist it really is happening. She suggests that when someone with dementia insists something bad's happening when it obviously isn't, a short-term way of coping with it is for the carer to focus on the underlying emotion of anxiety or sadness the person probably has and try to soothe it, perhaps altering the environment in some way to try to prevent such anxious worries coming up again. Trying to reason with them about how it isn't really happening can just make someone who's lost their reasoning abilities more anxious and angry and insistent it is happening. Thinking about why such a thing might be playing on their mind and trying to soothe their worries can work better.
She gives the example of a woman whose mother insisted she was being robbed, when she knew she wasn't because the things she said had been stolen were still there. Instead of arguing with her mother, trying to point out that they were still there so it couldn't be happening as she had before, which had only made her mother more agitated in the past when she'd insisted certain things had been stolen but they were all still there, she didn't contradict her, but soothed her by sitting down and writing a list of everything her mother said was missing, even though she could see some of it, and then moving the conversation on to her mother's concerns about crime and how scared she was becoming about living alone, which might have been the cause of her starting to get paranoid that things were missing. They ended up having a soothing conversation, and she bought her mother some burglar alarms to make her feel more secure. Her mother started thinking living in residential care sounded more attractive than it had before.
The author says often, we might be able to calm a person's fears with a few words. She recommends that, for instance, if they accuse us of stealing a certain coat of theirs, we could tell them it's just in storage or something, even if in reality we know they sold it twenty years ago. If we've got someone helping with their care and they tell us they've stolen something when we're fairly sure they haven't, we could say something like, "I'll talk to them. It won't happen again." We could tell the helper about reassuring ways they could respond if the person accuses them directly.
Trying to work out what the underlying emotion is behind what they're saying and focusing on that can be useful in other circumstances as well. For instance, if they start ordering us around or shouting at us, it might be that they're feeling disorientated because they feel control's being taken away from them by the disease and they want some control back. Distracting them and involving them in an activity might make them feel better and more in control of something.
Because people with Alzheimer's disease are slower to take in what's really going on and can be confused, aggression can be a defence against the possibility that something bad's happening, and they can be aggressive whether it is, or whether the person with them really had the best of intentions. So it's best not to surprise them at all.
The author gives the example of a woman with Alzheimer's disease who was having a lovely time watching birds feeding outside, and her helper came into the house and cooked her some warm soup. Noticing she was enjoying herself, the helper didn't want to spoil things by breaking her concentration, since it might not be that easy for her to get absorbed in watching the birds again, so she walked quietly up behind her and put the soup down in front of her without saying a word. But that startled the woman with Alzheimer's disease.
People without Alzheimer's disease who were startled like that wouldn't have reacted until the reasoning part of their brains had taken in the situation and realised they weren't in danger after all. But because the disease had robbed the woman of that ability, she responded aggressively. She assumed she must be under threat. She stood up, yelled at the helper and threw the soup in her face, and then chased her out of the room, threatening to call the police.
The helper went out for a few minutes, sat in her car, wiped her face, took her soup-splashed jumper off, and went back to the house. This time, she went to the back door and knocked gently. When the woman with Alzheimer's opened the door, the helper took a deep breath, smiled, and said, "Hello, I'm Carolyn. I've come to do some chores for you. Where do I begin?"
The woman with Alzheimer's disease said, "Come on in. Would you like to have a cup of tea with me?"
Announcing herself like that meant the woman with Alzheimer's wasn't surprised. If the helper had approached the woman from the front the first time or announced that she was bringing soup into the room while she was at the door, despite taking the woman's attention off the birds she'd been enjoying watching, the woman wouldn't have been frightened and reacted aggressively to defend herself against something she couldn't understand but seemed threatening.
So if we're careful not to surprise a person with Alzheimer's disease by doing something unexpectedly, it should cut down the number of aggressive outbursts they have.
The author says when we're trying to calm someone with Alzheimer's who's behaving in a difficult way, it'll be more reassuring for them if we make eye contact, speak calmly and slowly, and speak in simple, short sentences. If they're emotionally worked up, it'll take them longer than usual to take in what we're saying, so making it as simple as we can will help.
The author says quite a few different things can trigger off aggression or other difficult behaviour in someone with Alzheimer's disease, but if it isn't easy to work out what must be bothering them, we could do a bit of detective work, trying to find out by thinking through what's going on just before their outbursts, seeing if we can find something those times have in common that might trigger them off.
For instance, we might work out that the person started to get disturbed by thunder each time just before they got agitated, or that someone turned the television on loud just before each time, or something else.
She recommends that after they've become agitated and we've calmed them, we actually write down a list of things that were going on just before they became disturbed, to help us remember what was going on for when we try to work out what their outbursts had in common, since there might be one particular thing that happened each time that triggered them off. She says it might sound like a hassle to write things down, but it will help our memory so it'll make it easier to work out what's causing the outbursts so we can try to stop them more easily.
She recommends that for each difficult behaviour, we write down everything we can think of that happened in the minutes just before it, such as exactly where the behaviour took place, if there were children playing outside, whether it was raining, whether there were more than the usual number of people in the room, whether there were any sudden loud noises, what the time of day is, whether there are any odours around, and anything else we can think of. She says it usually won't be long before we get an idea of what's bothering them.
And when we do, we can do things to stop it upsetting them. For instance, if we feel sure rain must be making them feel uncomfortable, we could shut the curtains when it's rainy outside from then on and occupy them with something so they forget about it. If high winds are disturbing them, perhaps there's a part of the house we could always go in with them when it's very windy from then on where the wind doesn't sound so loud, or soft music might make the wind less easy to hear. If they always act up when a certain relative comes to visit, we might have to explain to the relative what's happening and politely ask them to stay away for a while. If a certain television programme bothers them, we might turn the television off before it comes on. And so on.
The author recommends other people write down what's going on when they behave awkwardly with them as well.
The author says one thing that has been found to make people with dementia quite a bit more anxious and paranoid is having nothing to do. What can help is if they can feel useful in some ways. It can give them a sense that they're still a valued part of the family, and that they still have control over some things so they're not helpless. So their self-worth doesn't get so low as it would if they felt useless. Doing more things can help them not to get depressed.
She says if someone with Alzheimer's seems restless and keeps worrying over things they used to do and thinks they should still be doing, like cooking the dinner, perhaps, or going to get the children from school, even though it's been years and years since their children were at school, distracting them by giving them simple things to do can solve the problem. If they haven't had anything to do for a while in someone else's house, they might say, "I need to be going home now", and try to leave. The author says what they say might well not be what they really mean. For instance, an urge to go home will often conceal a desire to be doing something enjoyable or worthwhile and a feeling that if there's nothing to do, there's no point in staying around. Giving them something to do can make them want to be around after all.
The author says even if they can't do a lot of things properly any more, they can still be given some tasks that will help them feel useful. For instance, they could help put the plates or some cutlery on the table, and even if they get some in the wrong place, we could just change them when they're not looking and praise them anyway for having helped. The author says if the person with Alzheimer's still feels like a productive member of the family, difficult behaviour is less likely.
She says if they do still seem anxious though, and we can't work out why, taking them to the doctor for tests might be a good thing, perhaps getting them some medication to calm them.
It can be difficult to allow people with Alzheimer's disease to do things, because they can mess things up. But if we can work out what they can still do without causing a problem and let them do it, it can make them happier. Everyone likes to feel they're doing something of value.
So, for instance, if they're having a bit of difficulty doing the washing, they can perhaps still do it for a while if some small changes are made. Here are a few the author suggests, for example, that might mean we can help people with Alzheimer's put clothes in the washing machine and start it off without making mistakes:
Or if they would still make a mess of things, such as putting clothes in the washing machine together that shouldn't be put in together, she suggests we could ask for their help with other things related to doing the laundry instead. Instead of putting them off by telling them what they make a mess of nowadays, which might make them feel bad and lead to an argument if they deny they're making a mess of things, we could ask for help with things they still can do well. So maybe we could ask them to do things like this, while they can still do them:
We could give them the clean laundry and ask them to fold it. It's a repetitive task they might find easier. It might take them an hour longer to do it than it would take us, but it doesn't matter as long as it gets done. If they feel useful at the end of it, and they have a sense of accomplishment rather than feeling helpless because they don't feel any good at anything any more, then that'll be a good thing. If we thank and praise them when they've done it, then perhaps both of us will feel good.
The author says that some people report that their family members with Alzheimer's disease have lost the ability to do things long before the disease would inevitably make them unable to do them. She says that can be because loved ones, with the best of intentions, have started doing things for them that they used to do themselves because they're beginning to find them more difficult, so they lose the ability to do them altogether through lack of practice. She says it's best if we try to find some kind of balance between asking them to do things they can't do and stopping them from doing anything. It's important for their self-esteem that they still feel they're being valued because they can still do things for the family.
Actually, my husband's never been keen on housework. Still, there are some things he still wants to do.
The author says that if we take tasks away from them altogether so they feel like a child, it can lead to more awkward behaviour.
She tells a story of a man with Alzheimer's disease who was frustrated because he felt as if his family were treating him like a child, taking away his independence. Really, it was no wonder they were, because he was becoming more and more disabled and a possible danger to himself. But he was unhappy. So he decided to show them he was still capable.
So one morning, he got up before they did, and went into the bathroom to try to take care of himself on his own. He stood in front of the washbasin wondering what to do. He vaguely recognised where he was, but couldn't remember why he was there. After a while, he wet himself, not really realising he'd done it, but feeling a warm wet sensation in his pyjamas. It didn't bother him too much at first.
Then he looked at the many objects in front of him, wondering which one was used for what purpose. Then he felt sure he recognised toothpaste, so he picked up the tube of it and cautiously squeezed the tube into his mouth and smeared the toothpaste on his teeth. But he forgot to get any further. He was getting more and more annoyed by the feeling of wetness in his pyjamas. It was cold and wet now. He decided to take them off. But they were tied at the waist with a drawstring.
He sat down on the side of the bath and pulled and pulled at his pyjamas until they ripped. He tore the cloth some more, till it started shredding into long strips suspended from his waist. He smiled with satisfaction that he was going to be able to get his pyjamas off.
Suddenly, his wife burst through the bathroom door. She shouted, horrified, "Look what you've done. You've ruined a perfectly good pair of pyjamas! And you've got toothpaste all over your face. What am I going to do with you?"
She started to wash and dress him, calling for her daughter to help, doing what her husband most feared - treating him like a baby. He wasn't able to express his feelings because he'd lost quite a bit of his language ability. But perhaps if he had, he'd have said he was still himself really, and would rather try and then fail than not be allowed to try at all, so he'd prefer to be given little things to do himself than nothing at all.
The author says there are things that could have been done to help him feel more competent, and to help other people in situations like that. They could be given pyjamas with elasticated waists so they can get them off more easily. Toothpaste could be put on their brush ready for them to use, and the brush put on the sink top. The toothpaste could be hidden out of sight so they leave it alone. Most little bathroom items could be put out of sight so as not to cause them confusion, and their toothbrush, and hairbrush or comb can be left out in clear view.
While they're cleaning their teeth and so on, their clothes can be being laid out, in the order they've always put them on so as not to confuse them. So the first thing they'd put on would be on top of the pile, and so on. When they'd put their underthings and trousers on, two shirts could be held up for them and they could be asked which one they wanted, so they'd feel good that they were being given some choice in the matter and still had a bit of control.
That would make life more pleasant and calm for everyone.
The author recommends we try to find a balance between not letting them do what they want, and letting them do things they can't do that would just lead to new failures. She says since their abilities will be changing all the time, what they can do might vary from month to month, so it's as well if we keep assessing what they can and can't do and write any new decisions we make about what to not let them do any more and what they could perhaps do instead on that care plan we write.
She says things we can look for to let them do so they'll feel useful are repetitive tasks that don't have to be thought about much, such as rolling dough for pastry, dusting, hoovering, shoe polishing, sandpapering, weeding perhaps, folding, furniture polishing, or sorting objects. Simple repetitive things like that, where they can do most of something without our help. Tasks that don't need much supervision can make them still feel competent and independent so that'll be good for their self-worth. Tasks like that can be things they can still do because they won't need to think about what order things need to be done in, and nothing too bad will happen if they lose their concentration on them.
The author says it can be good if we keep up a simple conversation with them while they're working or doing a recreational activity.
I heard about a study where some old people in a care home were given plants to look after. It was their job to water them. It was found that even that responsibility made them feel less depressed.
The author says her own husband died after he'd been suffering from Alzheimer's for years. He'd got it early in life, when they still had young children. In fact, he was showing symptoms of it when she was pregnant with her last one. But she learned to cope after a while.
She says doing repetitive little things gave him great satisfaction. She says one day, she went into the kitchen after dinner, and was dismayed to find him scrubbing a frying pan she had that had a non-stick surface, in the days when they were new. She'd saved up to buy it, since they were expensive when they first came out. He was scrubbing it with a wire scrubber, smiling and smiling, scrubbing and scrubbing, trying to get all the non-stick surface off, thinking it was dirt. The more he scrubbed, the more he smiled.
She decided to leave him to it.
It kept him happy for two hours. When he'd finished, he came out of the kitchen in triumph holding the frying pan high. He'd scrubbed all the non-stick surface off; but within that time, she'd managed to bathe a toddler, look over children's homework, iron shirts for the next day, and do some other things. So at least what he was doing gave her the time and freedom to do all that. At the end of it, she hugged him and told him it was the best job she'd ever seen. The children joined in with the applause. The next morning, her husband was still smiling, though he'd probably forgotten what had made him so happy. She says that didn't matter; the happiness he felt at being praised and thanked and feeling he'd done a job well were what had mattered.
The author says bath time can cause anxiety in particular that can seem to a carer to be out of all proportion to what's going on. We might wonder what the problem is - I mean, it's only a bath or a shower! But understanding why they might be getting anxious can help change what we do to things that can be calming.
She says one simple problem can be that having lost much of their ability to recognise things for what they are, they can mistake some things for frightening things. For instance, a mirror near the bath can make them think there's a stranger in the bathroom with them, because they no longer recognise themselves in it. Any gestures of aggression they make towards it might seem like the stranger becoming threatening. Removing the mirror can make them much less anxious. So if they seem to be bothered by a mirror, that's quite likely what's happening.
Of course, calming anxiety can take guesswork, if they can't explain what's going on.
The author says bath times can also be less anxiety-provoking for them if, rather than spending minutes trying to reason with someone who's lost their reason about why it's necessary for them to have a bath, which might just mean they're standing getting cold and getting in a worse mood so they're less likely to do what we want, especially if they're embarrassed at not wearing all their clothes, we try to create a cheerful environment and distract them from any worries they may have by talking brightly and reassuringly with them about something else the whole time, making them feel involved in the process, so they don't have time to get anxious. She says it's best to keep them fully wrapped in a towel or something till the last minute so they don't get cold. Even if we only take it off when they're stepping into the bath or whatever and it gets a bit wet, it'll be much better for their peace of mind than if they're getting cold. If we give them something to hold and focus on while we're getting them ready while it's practical, it can take their minds off any worries they have.
She says it can help if we also put attractive things in the environment for them to focus on, perhaps something pretty that smells nice, and maybe some soothing background music. We could also give them a soothing cup of tea or glass of wine, in a plastic cup.
She says various things that can increase their anxiety can include:
The book Alzheimer's Activities That Stimulate the Mind says old people can also be frightened because they might be scared of falling and breaking a bone, or that if they get cold, they might catch a chill and it could turn serious. It says if they're depressed, they might lose interest in things like personal hygiene. Or they might be tiring easily so it's a struggle to muster up the energy to bathe or maintain personal hygiene in other ways. And if they've got Alzheimer's, they can easily start something like combing their hair, and then get distracted and just forget what they were doing.
It says another problem is if they're in pain. Doing things like combing hair might hurt if they've got arthritis in their hands. Brushing teeth might be painful if they've got cavities. Their skin might have become overly-sensitive so it might hurt if it's rubbed with lotion.
But it gives some advice on how to create a calm atmosphere and make things easier for the person:
It recommends we explain everything that's going to happen before it does, so they're not startled by something happening they didn't expect.
It recommends we dress them or help them dress after their bath in the warm bathroom rather than going where it's colder.
It says music could liven things up and even provide humour if we can find something appropriate, such as if we play songs from a barbershop quartet while cutting their hair.
(It says if we're clipping their nails or something, to bear in mind it's best to clean things like scissors if someone else uses them as well.)
It says we might be able to get hairdressers to come to the house to cut their hair, since some do that.
It says it's good to praise and compliment the person with Alzheimer's a lot.
It says we can buy soap on a rope and tie it to the tap or something to stop them dropping soap and slipping on it in the bath.
It recommends we install metal grab rails in the shower and bath they can hold onto to help them balance when getting in and out.
It says electric toothbrushes will make brushing teeth easier.
I've never tried one of those.
We could put some of their favourite scent on them after they've had a bath.
Brushing hair while it's still quite wet after it's been washed stops it hurting so much because there aren't nearly so many tangles as there are if it dries quite a bit first.
It says we could even get towels warm in the microwave if we haven't got another way to warm them up! Or it says we could put them in a drier for a little while if we've got one. That'll make things a bit more warm and cosy.
It says if they seem scared of getting in the bath water or moving around, we could always stand near them and reassure them we're nearby to help prevent them falling.
It says we should make sure beforehand that the water's comfortable. Not too hot or cold.
Well, I would do that anyway.
The author of the book Learning to Speak Alzheimer's says it's important that we remember that the person with Alzheimer's has a short attention span so we don't ask them to wait a minute while we go and do something else. If we do, they might forget they were supposed to wait and wander off somewhere.
She says one woman told of how she'd got her husband all ready for the bath when she realised she'd forgotten clean towels, so she asked him to wait a minute while she got them. The next thing she knew, he'd walked out the front door stark naked.
She says the bathroom should be warm and well-lit, and have non-skid mats, and bars that can be held onto to help with balance. Also, it can be better if we have things like a seat in the shower with a hole in the middle so they can sit down all the time and yet we can wash their underparts.
Curtains or blinds are best closed along with the door, to make it cosier.
She suggests that if we're giving them a shower, we could hold the shower head and start gradually by showering their feet and moving slowly upwards so they get used to the pleasurable feeling of warm water on them.
She says baths or showers can be scheduled at the times when the person with dementia is likely to be in the best mood, most alert, relaxed and co-operative, perhaps in the mornings, before their brains are taxed by the challenges of the day.
It can stop some people becoming anxious if they have something to focus their attention on while they're in the bath, perhaps a sponge, or something nearby that looks pretty.
She says if they still panic, just giving them an all-over wash with a sponge might be best. She suggests a way of doing it that might keep them quite calm:
At first, while they're wrapped in a warm towel, we could give them a warm wet sponge or flannel to hold and look at and then suggest they wash their face with it. Then we could hand them a towel so they can dry their face themselves.
Then we could move on to the next body part, exposing only as much of them as we have to, giving them simple instructions and illustrating what we mean with gestures, showing them we're not in a hurry, and praising them whenever they do something we want.
She says a friend of hers had a husband with Alzheimer's who absolutely refused to have any kind of bath, and got aggressive about it. So his wife, who was a lot smaller than him, used to wait till he was asleep, snoring, and then get some warm water with soap suds in it and start sponging him down. If he seemed to be waking up, she'd throw a towel over him, pull up the covers and run! He never caught her at it, and she managed to keep him fairly clean from then on, though it tended to take four days to sponge the whole of him.
Don't worry about avoiding temptation - as you grow older, it starts avoiding you.
You can judge your age by the amount of pain you feel when you come in contact with a new idea.
--Pearl S. Buck
The author says life can be made easier for people with Alzheimer's disease if things are done to lessen their confusion, which can be caused by them losing their ability to reason, but also by them losing their senses of sight, hearing and other things. Losing those things can confuse the person because sometimes the brain distorts perceptions rather than just diminishing the senses, so, for instance, they can see and hear things and mistake them for other things.
One thing that can help is keeping unnecessary clutter away. For instance, at mealtimes, too many utensils and sauces and things on the table might be over-stimulating for them and might lead to agitation because it's difficult for them to take in all the information. Several choices might over-tax their failing senses. Only keeping what's necessary on the table can help.
Also, if the person starts to fail at fairly complicated tasks, simpler versions of them can be substituted and still make them feel happy they're doing something. For instance, the author says if planting a vegetable garden becomes too overwhelming, deciding what to plant in one can be substituted and can still be quite satisfying.
Talking of food, the book says that it might seem at first that preparing healthy foods will take ages, but that isn't necessarily the case.
The author says that as people with Alzheimer's begin to find it more difficult to use things like knives and forks, eating finger foods like rolls and sandwiches can make for a happier mealtime. She says we could perhaps make sandwiches or rolls for them containing things like tuna or cottage cheese mixed with bits of lettuce or herbs or soft chopped vegetables like red peppers or tomatoes.
Fruit like apples and pears and peaches and bananas cut into slices can be tasty and healthy and easy to eat, and things like grapes and cherries can be good.
Vegetables like carrots, cauliflower and broccoli, boiled for just a couple of minutes to make them softer so they're easier to chew, can be good.
The book recommends a load of other foods as well.
The author says in the later stages of the disease when they're losing their sense of taste, we could mix all kinds of healthy things together for them in a sandwich and they might like it, regardless of the fact that we're making odd combinations.
She says we might get frustrated at how messy they can be, especially if we give them things they can't just eat with their fingers so they have to try to use things we take for granted that we can use but that get much harder to use when they're losing their skills at manoeuvring utensils between a plate or bowl and the mouth, and they might even forget how to use such things. They might also forget what they're supposed to be doing while they've got food between the plate and their mouth, and if they're also losing senses like vision so they can't see what they're doing so well anyway, that makes eating more awkward. So they might spill things over themselves and the table and who knows where. Eating with their fingers can cut down a lot of that.
But also, the author says it's best to just try to tolerate a certain amount of mess, since after all, what really matters is that they enjoy themselves and feel they have a certain amount of control over what they're doing, rather than whether or not they look messy. Hurting their feelings by getting angry with them would be far worse for them than getting themselves all messy.
She recommends we start giving them finger foods early on so they get used to eating with fingers, and it isn't a novelty when the disease has progressed and they're making so much mess we feel it's the only option and they feel as if we're only giving them those because we can't cope. They'll be able to eat independently for longer if they get used to eating finger foods, because eating them will be easier than eating with utensils.
To make food stand out so they'll see it better, it's best if we put it on a plate which is a colour that contrasts quite a bit with the colour of the food, or if we put something on the food to make it stand out, like ketchup, grated cheese, or some herb or other.
Any soup would be best served in a mug. Fruit should be peeled if it needs it, since people with Alzheimer's disease can often not tell the peel apart from the fruit and will eat the whole lot. The author says she knew someone who even ate a teabag. So she recommends keeping fruit out of sight, or leaving peeled bits out here and there as healthy snacks for them.
She says eating less food but more often can be best for people with Alzheimer's disease, since distraction from what they're doing because their attention span has become so short can be what causes them to make a mess sometimes. So putting little healthy nibbly things around the place where they'll easily see them that they can snack on several times a day, like fruit, and rolls with healthy fillings, can be easier for them and us than three big meals, and mean they still get a healthy diet.
If they do make a mess, the author says it's best not to express annoyance that could only upset them. After all, it won't be as if they're doing it on purpose. Well, not usually.
The author says we should give the person with Alzheimer's disease something to drink several times a day, because there may come a time when they don't ask for drinks, perhaps because they've stopped associating a thirsty feeling with the need to have a drink. So to prevent them getting dehydrated, it's best to offer them drinks. That's apart from in the evening, when it's best if they don't drink much at all, to lessen the chances of them needing to get up for the toilet during the night.
The book The Selfish Pig's Guide to Caring says drinking with a straw might turn out to be easier for them.
I'm actually getting exhausted with trying to take in all these instructions! I think I need a break before I carry on!
OK, that's a bit better. I'll carry on now.
If they're losing weight, the author of the book Learning to Speak Alzheimer's recommends we check to see if they've got aching teeth or dentures that don't fit very well that are discouraging them from eating. Or it might be other things, like not being able to see the food.
She says if they don't feel hungry, we might be able to make them think of food more by giving them a small glass of wine or grape juice before dinner, or by not giving them any snacks before dinner except perhaps a selection of healthy sliced vegetables they can eat by hand, as a substitute for eating vegetables during the meal.
She says large portions can make them feel overwhelmed even if they used to enjoy them; so small ones are better.
And she says as their taste buds grow less sensitive, they might prefer stronger-tasting food, so putting herbs and spices on it might help them appreciate it more. She says some people even mix weird things together like chocolate chips and mashed potato!
She says if they don't like taking medication, we might well be able to get it in liquid form, and mix it into a drink of some kind.
But sometimes they'll take medication if we put it on a brightly-coloured little plate to draw their attention to it with their meal.
She says sometimes, when the person with Alzheimer's sees us eating, they'll start as well, which is one reason it can be good for us to eat together, as well as it being an opportunity for conversation, or for us to chat to them while they listen.
She says we should make sure the lighting's good enough that it helps them see what they're eating, but that it isn't so bright it casts shadows, which might alarm them because they don't know what they are.
She says if they eat messily, we could put something over them, but not a childish bib; perhaps something more like a teatowel or a big apron; and we could put one on ourselves so they don't feel singled out as more incompetent, and we could say something like, "I think this meal's going to be messy for both of us; let's put these on."
She says we can prevent some of their confusion if we only serve one course at a time, for instance if we give them a mug of soup, letting them drink that and taking the mug away before we bring anything else in.
She says if someone else is going to look after the person for us for a while, it's best if we tell them what they like eating and drinking and what they don't like, and what times they're used to having meals, and things like that. Otherwise, they can sometimes get upset and stop eating.
She says in the late stages of Alzheimer's disease, people can develop difficulties with chewing and swallowing. She actually says a speech therapist may well be able to advise us on the best foods to give them and the best feeding methods to use, and our doctor should be able to refer us to one.
The author says people with Alzheimer's disease might very well start dressing sloppily, and people might think they've stopped caring about their appearance, when really, they're just losing the nimbleness in their fingers that would enable them to cope with buttons, zippers and things. Things like Velcro instead of buttons can help.
As the disease progresses, they might put all kinds of things on in weird combinations as well, thinking they've done a good job of dressing themselves. The author says it's important that we be tactful about it, because otherwise, it could hurt their feelings for some time.
She says this is the kind of thing that could happen when a carer doesn't think first about how the Alzheimer's disease is affecting the brain of their loved one so they react as if the person has all their faculties in perfect working order so they ought to know better and are just being stupid:
A man might be clearing up the kitchen a bit when his wife with Alzheimer's disease comes downstairs. She has an appointment at the hairdresser's soon. He doesn't think what she's wearing would be appropriate to go out in at all, so he shouts at her, asking what on earth she thinks she's doing, and orders her to go back upstairs and change. He doesn't make any suggestions about what she should be wearing instead.
She goes back upstairs, and just sits on the bed for a while, feeling despondent. Then he calls to her impatiently that it's time to go. She goes back downstairs, hoping he's in the car so he doesn't see she hasn't changed and shout at her again.
He is in the car but he sees her, jumps out, pulls her back into the house and yells, asking how she could embarrass him like this, wearing clothes that really don't go together, one a blouse you might wear on an evening out and the other some shabby work trousers.
She starts crying and goes to bed. He phones the hairdresser and cancels the appointment.
The scene can be contrasted with an incident that could have been highly embarrassing but was handled very differently:
A woman was eating with her mother who had Alzheimer's disease in a restaurant. She'd met her at the door with her coat on and they'd quickly got into the car and driven off, since it was raining. In the restaurant, the woman suggested her mother take her coat off. She did, and it turned out she was just wearing a well-worn thin pink slip with one strap held up with a safety pin.
Her daughter just leaned across the table and said it was so chilly in the restaurant that she was going to keep her coat on. She said, "How about you?" and her mother decided she'd put hers back on again, and she let a waiter help her back into it. They enjoyed the dinner.
The author says it's often the way people respond to the mistakes people with Alzheimer's disease make that rob them of their dignity, not the mistakes themselves.
She says the man who'd shouted at his wife could have handled things very differently in a way that kept them both happy. Instead of yelling about how she could possibly come out wearing what she was, he could have said, "That's such a beautiful blouse; I think it would be nice if you save it till we go out for dinner tonight. And how about if I find that nice brown jumper that goes so nicely with your trousers that are brown?" The author says repeating the word brown would help her remember the reason for the change of clothes. And if she hadn't liked the idea of changing, the worst that would have happened was that she'd go to the hairdresser with an odd outfit; but that probably wouldn't bother the hairdresser, who would be used to her changes in behaviour since she'd got Alzheimer's.
A man who brought up the problem of his wife's strange dressing habits in a support group hit on a solution after discussing it with the group:
He got his daughter to come round and sort out his wife's clothes so only outfits appropriate to what season of the year it was were hanging up, and all matching things were put together. She took quite a few clothes away with her. The man simply told his wife they'd been put in storage when she asked where they were, rather than explaining the truth and embarrassing her. Several weeks later, the daughter came back and took more things away, and did that again, till only clothes that went well with each other were left. That meant the man's wife could still have the satisfaction of choosing what she wanted to wear from what was left, feeling in some control of that part of her life.
The author recommends certain principles we ought to try to follow when helping someone with Alzheimer's with their clothes:
The author advises that we never act as if we're in a hurry if we're helping them get dressed. They might just get agitated if we do, because they just won't be able to process more than one request at once and are bound to take quite a bit longer to manage to do each thing. She recommends we try and schedule any appointments we have in the afternoon to get around the problem, or if we have to have an early appointment, to lay out their clothes the night before in the order they put them on ready for them.
She says with a person who insists on wearing exactly the same thing day after day no matter how dirty it gets, we could wait till they're asleep and take it away, having bought things that look just like it so we can replace it with one.
And she says it shouldn't really matter to us if they wear things they would never have worn in the past, as long as they're comfortable.
She says if they enjoy taking their clothes off at inappropriate times, we could buy them a one-piece outfit with a zip that's out of their reach. Or she says another solution is to get them a "busy apron", which is an apron we can put round them with all kinds of things sewn onto it that'll distract them and give them something to do with their hands so they stop using them to undress themselves. The things sewn onto the apron could be ribbons, silk flowers, keys and other dangling objects, and so on.
She says putting a little bit of make-up or perfume on women with Alzheimer's, or perhaps after-shave on men, if we're going to go out in public or if they'll be meeting others in a nursing home, can mean people compliment them so they feel good.
And she says complimenting them on things like the way they look ourselves can cheer them up a lot sometimes.
I've got another book called Alzheimer's Activities That Stimulate the Mind. It says there are lots of little things around that can make it easier for someone who's finding it more difficult to use their hands to do things like eating and dressing or caring for themselves in other ways. It recommends we ask our doctor if we can see an occupational therapist so we can explain the difficulties and they might be able to get us gadgets that can help the person. The doctor might be able to recommend some things as well.
The author of the book Learning to Speak Alzheimer's says she's been to lots of support groups for people in the early stages of Alzheimer's disease, and a lot of people there have expressed their views on what helps them and what they don't like. She lists the kinds of things some of them say, this kind of thing:
She asked them what advice they'd give other people with Alzheimer's disease to help them live more positively and at the best functioning level they can for the longest, and they said things like:
The author says some people in the early stages of Alzheimer's have still managed to achieve a lot, for instance speaking at conferences about Alzheimer's.
The author says everyone tends to feel better when they've got people around them they get on with. So if we can invite friends around who the person with Alzheimer's gets on with, they might well feel better, if they can enter into the conversations, perhaps reminisce about the old days, enjoy listening to music, and other things. One-on-one conversations might be enjoyable for them because then they're getting personal attention.
Having children and pets around some of the time might make them feel better as well. And if there are any hobbies they can still participate in, that can help them feel life is still worthwhile and can even be enjoyable.
She says when their language skills are failing, we can make ourselves understood better with facial expressions, gestures and our tone of voice. She says we can also communicate with pictures rather than words when they've lost so much of their ability to use language that they wouldn't prefer to use words. Conversations with pictures can help them enjoy life more when their language skills do fail.
She says if they've just begun to need help finding words, they might find it demeaning to have words substituted with pictures; but in a more advanced stage of the disease when their language skills are worse, showing them pictures of babies and pets and things might be far more enjoyable for them than having discussions about babies and pets and so on. She says basically, the important thing is what will help them get most enjoyment out of life. She says the less frustration they feel at making verbal mistakes, the longer they'll want to stay around others using the language skills they still do have.
She says if they keep struggling to find words, we could quickly say what we think they mean, so the conversation can move on. The important thing is that they enjoy it, not that they manage to find the words themselves; and if they take too long trying to find the word they wanted, they might forget what they were saying altogether.
She says using scented things to bring back pleasant memories for them that we can talk about with them or that they can just enjoy can be nice as well.
The author says that though words may fail a person with Alzheimer's disease, picking up on the emotion behind what they're trying to say can mean we can sometimes guess what's bothering them; and responding to that can calm them or help them.
She tells of a couple where the wife was losing her ability to put words together, and one day, unusually for her because she was normally gentle and quietly-spoken, she put her hands tightly over her ears and yelled at her husband, "Shut! Shut! Shut!" She had first had trouble finding words, then started making up words for what she wanted, and then she started hardly saying anything at all. And now this.
He had no idea what he'd done to deserve it. But he walked over to her and put his arms around her. She started crying, and he said, "I've been talking too much, haven't I? You want me to just shut up, and I don't blame you." He realised that her inability to communicate any more and her loss of comprehension of what others were saying must be really frustrating for her, and that her angry outburst must be her way of conveying that she was becoming overwhelmed by the situation.
The author says it's common for people with Alzheimer's disease to have angry outbursts when their language is failing them, and we can understand more if we think of things from their point of view.
She says that for instance, it must be really frustrating and upsetting to slowly lose the ability to chat with friends and say what you want to people, or to think you're saying what you want but then to not be understood, or to not understand the person talking. Recognising things like that might even help us look for the signs that an angry outburst might be coming and do things to try to prevent it.
She says people losing their ability to talk can get frustrated if we don't take the time to work out what they really mean, especially if they know what they want to say but can't say it. But they might be giving us enough hints for us to be able to work it out if we do spend a bit of time trying.
She recommends that if they start making up words for things, we tell anyone else caring for them for a while what those words are.
But she says they might make a word up that means something at one time and then its meaning might broaden to mean other things like it as well. For instance, she says her husband started using the word "smish" to mean sandwich, but after a while it came to mean all food, and he'd say it whenever he was hungry.
She says another thing that can happen is the sounds get scrambled so their brain doesn't process them well so they think we're saying something very different from what we are. She gives the example of someone saying "I've bought some lamb chops. Would you like one for dinner?" The person with Alzheimer's doesn't say anything, so they repeat themselves a bit louder. the person with Alzheimer's thinks they said, "Wooden lamps are dimmer" and they wonder why they're repeating themselves and waiting for an answer.
She says that can make communication more stressful, but there are ways of trying to get around it, such as breaking up what we want to say into very simple sentences. She says keeping eye contact with them helps as well.
She says they can sometimes latch on to the last word we said and think it means something we didn't intend it to mean. For instance, we could say, "Look, it's snowing outside", and it's as if they just hear or remember us saying the word "outside", and they might get up and head straight for the front door, never mind putting their coat on, as if we just told them to go outside.
Still, she says once we know they do that, we can use it to our advantage. For instance, if we'd prefer to make one thing for dinner but we'd like to include them in the choice of what to make really so they feel they can still be capable of making decisions, we could say what we want to make most last, and they'll usually say they want that. So, for instance, if we asked if they wanted chicken or pasta, they'd usually say pasta. The author says it's best to stick to only giving them two choices, because too many might get confusing for them.
She says communication can be confusing for us, because sometimes people with Alzheimer's disease can have good speech but not much understanding, or not be able to say much but understand a lot.
She says it's best until we know otherwise if we assume they still want to participate in conversations with people, because they can feel left out if people stop communicating with them before they've lost the ability to communicate. So even if they seem bored or as if they're not listening, or if they talk at inappropriate times or aren't speaking logically, they can still want to join in. Being ignored can be hurtful to them while they can still understand and contribute a bit.
Also, she says they can become quite good at picking up on what people mean by their body language, so using gestures and tone of voice and a friendly attitude to them can convey things to them that can help them understand and feel less stressed than they would if they could tell by our body language that we were impatient or fed up, so they might be able to think slightly more clearly than they would if they felt hurried.
She says it's best to approach them from the front so they can see us coming and don't get startled, and to communicate with them in a calm way, not necessarily expecting a response.
She says it's best to talk to them fairly slowly in a quiet voice using simple sentences. Raising the voice can be off-putting, because even if they're finding it difficult to understand us, that often won't be because their hearing's going but because sounds are getting distorted in their brain; so talking fairly quietly can be what's most reassuring.
She says it's best if we can make efforts to be patient with them, because their brains will take longer to process what we've just said to them because of what the disease has done to them.
She says it's best to tell friends about what words the person with dementia is familiar with, if we notice they use other ones and they're going to care for them for a little while. For instance, if we've been used to calling a meal in the middle of the day dinner but a friend who's going to look after them for a while calls it lunch, the person with dementia might well not understand what they mean.
She says slang terms and figures of speech will also be difficult for them to understand, so we should ask people to keep their language simple if they can. For instance, if someone uses the saying "pulling my leg", the person with Alzheimer's might take it literally.
She says if we want to have a serious conversation with the person with dementia, it's best to go where there won't be many distractions and it's quiet, and sit near them in an informal way but one where we can both make eye contact easily.
She says if we can understand them, it's good to show them that we understand so they get a feeling of competence, as a nice change from the sense of failure they might be feeling sometimes because of what they can't do any more. And if we can't understand them, if we gently say, "Sorry, I'm having trouble understanding", it won't sound as bad as saying, "You're not making any sense".
There are so many things to take in here I need a break.
OK I'll carry on now.
The author says it's best to avoid asking the person with Alzheimer's disease questions where they have to make a decision without us giving them a clear choice of one thing or another. For instance, saying, "Would you like a cup of coffee" means they have to think of the answer all by themselves without us even hinting at an answer, so they might say no when they'd really like one, because they feel flustered by being asked to come up with an answer all by themselves, and say no because it seems safest, rather than saying yes to something when it's taking a while for them to process what the question meant so they think they might end up with something they didn't want. She says saying something like, "Let's have a cup of coffee" can be better, because then they don't have to worry over making the decision, but can just go along with it unless they seriously object.
It's also good to just tell them we're going to do things if it's hard to motivate them to do anything if we give them a choice of whether to do it or not. Once they start, they might enjoy it, when they wouldn't have felt like starting if we didn't say we were going to and start right away, but just asked if they wanted to.
The author says humour can be good, so it might be nice to watch comedy videos with the person we're caring for, listen to or read funny anecdotes with them, and tell them funny things. She says even if they don't understand everything, being able to laugh with us might make them feel more cheerful. She says if we can think of amusing situations we were both in together that we can remind them of, we could both have a good laugh and enjoy ourselves. Or old family videos of family outings or weddings and things might be nice, as well as cheerful things they used to like a lot like musicals.
She says music can be useful, since it can actually help calm awkward behaviour sometimes, as well as lulling people to sleep, and being enjoyable for them to listen to. It can also help bring up memories from the past that we can have conversations with them about, especially if it's music from a significant time in their lives or music from their culture of origin. Sometimes, we could perhaps clap along or use percussion instruments if they enjoy that.
The book says sometimes we could perhaps play games, such as if we say the titles of old songs they're familiar with but with one word missing, and they have to guess what the word is.
The author says that even if they can't communicate well, we can try and sense the emotion behind what they're trying to say or the way they're reacting to things, and respond to that.
She says watching television might be enjoyable for them in the first stages of Alzheimer's disease, but as the disease gets worse, it might become over-stimulating. For a while, we could try putting programmes on where only one person talks most of the time, like documentaries. Then again, if they're too depressing, it might not be a good idea for them to watch them, in case the person with Alzheimer's doesn't understand them properly and gets the wrong idea, for instance thinking a documentary about a tsunami is about something happening locally. That would be scary!
The author says that as the disease progresses, the brain scrambles the signals coming into it from the outside, such as what people hear, so it gets harder to tell what's really going on. Sounds horrible!
She says it can get more difficult for people with Alzheimer's disease to separate one sound from another. So noises that are unexpected in particular, or where the cause isn't obvious, can unnerve the person. So limiting them as far as possible can help keep them calm.
She says the same thing can happen with vision, where people can lose the ability to distinguish between colours, to see the shapes of things clearly, to tell things apart unless they contrast sharply with each other, and to judge motion. So they can misinterpret what's going on. She says, for instance, that shadows can seem threatening. So it's best if we can try to keep the environment free from anything unnecessary that could seem puzzling.
She says someone's sense of touch might be affected in a similar way so they can't identify what's in their pockets any more.
And the disease might stop the taste buds working well, so some people might like their food flavoured with herbs and spices to increase their enjoyment.
The author says daylight's the most comfortable kind of lighting for people with dementia. So if we can buy light bulbs that make the light look more like daylight, it can help.
She says adjusting the lighting can increase their safety, their feeling of security and make things look more comfortable for them. If a lamp's used, it should only be used on a desk where they're working. Lamps around the room can create shadows that can scare them because they can think they're other things or not know what they are. Finding ways of getting rid of shadows can help them feel safer.
Leaving night lights on all night can be good, because they can guide the way to the toilet if the person with dementia gets up and needs it. The author says night-time incontinence can sometimes just be a consequence of not being able to find the toilet in time. She says most hardware shops sell sticky-backed reflector tape, and we could get some and run some between the bed and the toilet to mark the path, putting several night lights on the way so it shows up better. She says it's even possible to get some tape that shows up brightly without much or any light, though it's expensive.
She recommends we turn the lights on at sunset, to try to prevent something that's quite common, where people with Alzheimer's disease can get more aggressive as the sun goes down. She suggests we could get lights with dimmer switches and turn them up and up as the evening progresses to compensate for it growing darker outside.
The author says that as the vision of someone with Alzheimer's disease gets scrambled, one thing that can help them still recognise things around them for quite a bit longer is using colour to contrast things with other objects near them to show them up more.
It can sometimes help if each room has a different colour scheme. If every room's decorated in a different colour, it can be easier for people with Alzheimer's disease to remember where they are and not get lost.
It's best to choose warm friendly-type colours for the walls, which contrast with the furniture so it stands out more. The author says bright colours can help people with failing vision perceive depth and contrast better.
She says it might be easier for a person with Alzheimer's to get around if we put brightly-coloured cushions on dining room chairs so they can tell where the chairs are better; and we can help them recognise their things better if we, for instance, put their favourite photos in frames that are contrasting colours to them.
When things stand out from one another more, the person with Alzheimer's disease can sometimes carry on using them for a lot longer.
She suggests we paint the wall behind the toilet a dark colour that contrasts with the colour of the toilet so it stands out more and can be seen well from the doorway.
Also, we could paint the wall by the side of the stairs and the stair banister a colour that contrasts markedly with the surroundings, so they'll be able to tell where the stairs are better, so they'll be less likely to fall down them.
She says if the chairs and sofas are the same colours as the background, we could put different-coloured rugs or something on them so they stand out, so the person will have more of an idea of where to sit.
She says as well as using colour to make things stand out so they show up better, we can also use it to camouflage things we don't want the person with Alzheimer's to go near. She says a lot of care homes put a black mat just inside the front door, and it can look like a dark chasm that it would be dangerous to try to cross. That tends to stop patients wandering off and out of the door, and stops the staff having to tell them off so much. When the patients see what seems to be the hole, they just turn around and come back.
Also, painting or wallpapering the doors to the street outside the same colour as the surrounding walls makes them harder to see and so less of a temptation to wander out of.
It's also best to put new locks and door handles up high or down low, so they're not within easy reach of the person, and leave the old ones in place but not working, so the Alzheimer's sufferer will probably keep trying to use them and decide they just don't work any more, rather than looking for new ones on another part of the door. That'll help keep them safe. The author says her husband used to open the front door and wander out of it, and she was scared because her toddler started following him. She worried they'd both go out and get lost one day. Then she thought of putting a door handle up high on the door. She disabled the old one. She doesn't say how. Her toddler son couldn't reach the new one, and her husband didn't think to use it, but instead kept trying to use the old one that didn't work any more, and concluded it must be broken. Hopefully the technique will often work for others.
She says we can use colour contrast with the person's things as well. For instance, if we put their clothes down somewhere for them to find and put on, it can help them find them if we put them down on something that's a very different colour from them, if possible. For instance, putting white underwear on a white pillow might mean they don't see it and pull the sheets off the bed looking for it.
She advises we keep colour schemes simple. Contrasts should be plain and obvious. She says things that are a mixture of colours such as black and white stripes can be confusing to look at for people with Alzheimer's, and light shades tend to blend into one another, making it difficult to see a chair against a wall of a similar colour or the floor, for example.
The author says people with Alzheimer's disease will tend to walk less and less ably till they're really just shuffling. She says it's common for them to fall over, and floor coverings are often the cause. But she advises that before we think of what might need to be done to the floor, we check the person's footwear.
She says if we've got tiled floors, it's best not to clean them in a way that makes them shiny, because that can give an illusion that there's water on them or ice, or something else that could cause the person with Alzheimer's disease to become fearful. She says wall-to-wall carpet's the best kind of floor covering, when there are no rugs that can be tripped over on it. Things being spilled on it might be a problem though, and it might get worn down by being shuffled around on so often. At least it won't be slippery though.
She says it can be good to have light-coloured carpet if we choose to have carpet, since it gives the impression that the place is roomy.
She says taking out all rugs of any sort can be a good thing, because they're so often tripped over by people with Alzheimer's disease. That could lead to a nasty fall.
She advises we think about shadows that can be cast on flooring by things covering the windows or other things, and try to eliminate them as far as possible, because they can cause people with Alzheimer's to misinterpret what they are and get scared.
She recommends we level or repair any uneven flooring.
She says if we're getting a new floor, the best kind is a mock hard wood one, because it's easy to care for and can give the feel of an old home. She says they can be found in most big home improvement places.
The author says it can help people with Alzheimer's disease find their way around the house and be please that they can still do that if we keep clutter out of their way so they have clear spaces to walk in to get around a room and from room to room. Also, It can be good to put a colourful wallpaper border at about waist height around the walls near the doors of the rooms they're in most, and we can put it on any door that leads to somewhere where they'd be unsafe as well, so when it's closed, it just looks like a continuation of the wall, so they'll be less likely to decide to go out.
The colourful borders can lead from room to room as well, so they're guided from one to another. Also, colourful arrows can direct the way to the bathroom. Rooms meant for specific activities could have pictures to do with those activities on the door. For instance, pictures of food where food's being made and eaten.
The author says we should remove furniture that it's difficult to get in and out of, since as the person with Alzheimer's disease loses control of their faculties, their sense of balance will get a lot worse. It's best to have sturdy chairs with arms that are easy to push up from, at a decent height, and which don't go back too far, since soft chairs you sink right down into can be more difficult to get up from.
She says if possible, we shouldn't have furniture that looks unstable, even if it isn't really. If it wobbles or moves when touched, it might seem to someone with Alzheimer's as if it's ready to fall down, which might scare them.
Shelves fitted into walls might be safer than free-standing bookshelves, and will also be an arrangement that makes for less clutter, so the person with Alzheimer's won't feel so threatened by things that are in the way that they can't really distinguish, and will find moving around easier.
She says there comes a stage in Alzheimer's disease when the sufferer can look in a mirror and not recognise themselves looking back, so they'll think there must be a stranger in the room, and that'll be scary, because they might think it's an intruder come to do harm. Or because it looks familiar, they might think it could be a ghost of one of their relatives, or a relative who died a while ago but who they think must be still alive and in the room, because they've lost the ability to tell fact from fantasy. So it's best to keep mirrors out of sight, especially if we notice they're not using them any more.
She says other things hanging on the wall can cause distress to a person with Alzheimer's as well, such as photographs and pictures where the frames cast shadows they mistake for other things. She recommends we replace any reflective glass in frames with "no glare glass" (I'll have to find out what that is), so it doesn't cast shadows and reflections that can cause them to imagine there might be all kinds of scary things in the room.
She suggests we remove images that are abstract or show complicated scenes they might find it increasingly difficult to interpret, and replace them with simple pictures of soothing things like flowers and children and animals that might bring back nice memories for them.
She says wall hangings with nice textures on them, and pictures drawn and painted by children, can give pleasure to people with dementia and can start interesting conversations that can help fulfil their need for communication with others. Having nice pictures on the wall can be enjoyable for them.
But she recommends we get rid of any reminders of hobbies they used to like that they can't do any more, perhaps ones that required dextrous hand movements. She does say, though, that if there are hobbies they can still take part in, we leave the tools they would use around them to encourage them to do them more, such as leaving them near a favourite chair.
If they like to talk to friends on the phone but are finding it difficult to use the phone or remember phone numbers, we could buy them a phone with much bigger numbers, program the numbers of the people they like talking to into it, and perhaps even put little pictures on the buttons they need to press to call those people, such as pictures of those people or things they're associated with.
She says one thing that could give them hours of enjoyment is a sturdy fish tank where they can look at fish swimming around for ages. I've heard people can find that soothing. She says it can also help them feel good because feeding the fish can make them feel useful and as if they've got something to look after. But she says we'll have to set a specific time when the fish are to be fed, because otherwise they might get fed too often. She says put a comfortable chair for the person to sit on in front of the fish tank where they'll be able to see the fish best, not beside it or anything. It's best if we put it in a suitable place, rather than relying on the person to put it in one.
The author says as the disease progresses, the person with Alzheimer's might forget what's where, and find it more difficult to understand what we're trying to tell them. So we could put pictures of things on doors and drawers and things to remind them what's inside, such as a picture of a toilet on the bathroom door, or next to it if we leave the door open, a picture of underwear on the underwear drawer, and so on. She recommends we keep thinking about what new things could help them as they become more disabled by the disease, assessing what new pictures and things they could do with and what they don't need yet.
The author says it's widely agreed nowadays that incontinence in the early stages of Alzheimer's disease is often not to do with the effects of the disease on the bladder, but on problems like not being able to find the toilet in time, or mistaking another door for the toilet door. Putting a picture of a toilet on the bathroom door and lighting the way somehow in the dark can help, as well as ensuring they dress in things they can take off quickly.
Painting the bathroom walls a very different colour from the toilet can help them see it.
She says if there's an odour of urine in the house, products sold to take away the smell of cat urine can work on the human variety as well.
She says if they start going to the toilet outdoors, it might be because they have distant memories of having an outside toilet when they were young or being allowed to urinate in the garden in the summer when they were little, and they might think going outdoors is safer than risking an accident indoors.
She recommends we take them to the bathroom often to cut down the risk of them having accidents, but we can do that in a tactful way. For instance, rather than saying something like, "I'd like you to go to the toilet now so you don't risk wetting yourself" or something, we could say something like, "I'm going to the loo. How about you go first?" or, "I'm going to use the upstairs loo now; you can use this one over here, the one with the brightly-coloured walls."
She says a lot of long-term care programs geared towards the needs of the patient have two-hour toilet schedules where staff walk along with a person with Alzheimer's disease, chatting to them about something unrelated, and when they get to the toilet, they say, "I'll wait out here for you".
She says that because of short term memory problems or short attention spans, a person with Alzheimer's disease might not realise any more that the sensation of having a full bladder means they need to get up and find the toilet, and by the time they do, they'll need to get there quickly.
She says at night, we could have a commode for them by the bed if it helps. She says there's a thing called a bed pad that we could put under the sheet before incontinence is much of a problem. If it gets to be more of a problem, we could put a plastic sheet underneath the usual sheet, even if they're wearing geriatric nappies overnight. It's best not to give them a drink after their evening meal so they won't need the toilet so much at night. And we could leave the bathroom door open with a light on, or something else to guide the way.
But she says if the person suddenly has problems with incontinence, it might not be the Alzheimer's disease doing it. We could see the doctor about it, because it might be to do with a medication they're on that can be changed, or it could be an illness that could be cured.
The book The Selfish Pig's Guide to Caring advises that we could do things to make cleaning up after an accident easier for ourselves. For instance, if they've stained a carpet in the bathroom or bedroom, we could pull it up and throw it away and just have lino or something on the floor, so any poos on it won't sink in in future. We could make sure the person we're caring for wears clothes that are easy to take off, for instance with elasticated waists or Velcro fasteners rather than buttons and zippers that might be fiddly for someone losing their dexterity, so they'll be able to take them off more quickly if they have to. It says one thing we could do if they often mess the bed is to start setting the alarm and getting them out of bed a couple of times a night and showing them to the toilet. A bit of a hassle, but better than what would happen otherwise.
It says if the person's aware they're making a mess, they might be ashamed and frightened that they can't stop themselves doing it, so getting angry with them won't help and will just make things worse.
The author of the book Learning to Speak Alzheimer's advises that if we go to a friend's house, we tell them quietly about the toileting needs of the person we're caring for so if we need to take them to the toilet more often than usual or something, they'll understand.
She says if the person's constipated, we could try adding high-fibre foods to their diet like stewed prunes or apricots. I think increasing fruit and raw vegetables in general can help. In fact, I once heard a story about a man who was so constipated he couldn't stand it, but then someone recommended he eat an apple every morning before breakfast, and that solved the problem after a while. I've no idea how many people that would work for. Still, it might be worth trying. She says if the problem doesn't go away, seeing a nutritionist could help.
She says if they need to sit on the toilet for a long time in the meantime but they keep getting up and wandering off, distracting them by giving them a photo album or a picture to look at or something to fiddle with, and perhaps putting soft music on might help them stay there till they've finished.
She recommends we don't move straight to using geriatric nappies when they start to be incontinent, because they might feel humiliated. First, we could try the thickest kind of pads women use as sanitary pads. They'll be easier to put on and take off than nappies anyway. Using them along with getting the person to the toilet every two hours might stop incontinence being a serious problem for longer.
Lastly, she says it's best not to scold them about the accidents they have or draw their attention to them, which would only make them feel like a failure, but to praise them when they do something right.
The author says there are several safety devices that can make a lot of difference to the safety of the person with Alzheimer's disease. For instance, we could put child safety gates at the top and bottom of the stairs. She says stopping someone with Alzheimer's climbing up the stairs can be as important as stopping them falling down them. Perhaps that's because they might lose their balance and fall down them halfway up.
She says we should get locks for the cupboards and drawers where we keep substances that can be dangerous like disinfectant, or where there are things we don't want them to mess up or move. She says there are locks that don't need keys, that it takes a bit of thought to unlock, so we could do it, but someone whose thinking powers and skill at using their hands has deteriorated couldn't.
She says anyone who's still got fireplaces could camouflage them by putting something colourful in the entrance, such as a big basket of sewing or a silk flower arrangement.
She says that naturally we should keep all matches and other fire lighting equipment hidden from them.
She says for those of us who've got electric stoves or ovens, it's possible to get someone to install a "kill switch" which the person with Alzheimer's disease doesn't have to know is there, but which we can turn off when we're not using the stove or oven so they can't come in and turn it on when we don't know. She says people with gas stoves can speak to their gas companies about how to make the cooker so it can't be used by them. She says it's good if the person we're caring for can think the oven's broken rather than that they've failed at trying to use it, - perhaps that it's temperamental and doesn't work all the time, because their feelings of competence count as well as their safety.
The author says that though the person with Alzheimer's might not actually lose their hearing, the disease can make it harder to tell which sounds are what. So sounds we just take for granted and don't think twice about, like the television, telephones, doorbells, flushing toilets, running water, alarm clocks, traffic, and radios, for instance, can be disturbing and over-stimulating to someone in a certain stage of Alzheimer's disease.
She recommends we look out for any signs that the person with Alzheimer's disease can't distinguish one sound from another or can't understand words, or is scared of noises or annoyed by them. She says even quiet sounds that we might not even notice, like the whir of a fan, might be really annoying to someone with dementia. Or they might hear a car outside and seem terrified it's going to crash into the house. Two sounds together, even nice ones like a baby laughing and a bird singing at the same time, might cause confusion and agitation. In a conversation, it's best if only one person talks in the room at a time if possible.
She tells the story of a husband who couldn't work out why his wife with Alzheimer's disease would shout instead of talk at a certain time of day in a certain part of the house. But he concentrated on what was going on to try and find out, and realised she shouted when the heating was making a noise. He didn't even notice it. But she seemed to think it was so loud she needed to shout over it. He got some insulation put around it to quieten the sound.
The author says if a sudden noise frightens them, we could explain what it was and demonstrate by making the noise again. For instance, if we drop a pan in the kitchen and it scares them, we could explain what it was and perhaps drop it again to demonstrate that's all it was. But she says it's best if we can try to think of ways to cut down the risk of making loud noises, such as buying a non-slip mat for the kitchen to dull the sound of anything being dropped on the floor and to reduce breakages if it does.
She says some sounds might be frustrating to a person with Alzheimer's disease because it reminds them of things they can't do any more, like preparing meals. She says if we think that might be happening, we could try to think of ways of solving the problem, such as giving them things to do that they can help with, or trying to cut them off from the sound in some way.
She says it's possible to dull sounds a bit by making the place echo less, by, perhaps, putting some kind of insulation on the walls. She says shutting the curtains in broad daylight and turning the light on might be worth doing if it quietens street sounds that are agitating them.
So people with Alzheimer's might be a lot more comfortable if we can keep the place fairly quiet.
But then, the author says it's only at a certain stage of the disease that they have those problems. When it gets worse, maybe because they retreat into their own world more, they stop seeming bothered by such things.
The author says some sounds can actually help us look after the person with dementia. For instance, we could put little jingle bells on a door or gate that it would be unsafe for them to go out of, so we can be alerted if they try so we can go and divert their attention.
She says some hardware stores actually sell alarm-type things called travellers' locks that can be hung on a doorknob and they'll emit a shrill sound if they're turned.
The author says large spaces can seem uncomfortable for people with Alzheimer's disease, so we could encourage their confidence and conversation by putting chairs close together at angles that make it easy to see each other, in a way that gives the impression that they've been put there for people who want to have conversations to sit on; and we could maybe only use one end of the dining table rather than being spaced out. It's important that the person with Alzheimer's feels cosy and able to chat if they want. She says it's best if we can try to make things cosier without moving the furniture around that much, if possible, so it's still basically how they remember it.
But she says they might also want time alone. She says other people do sometimes, and people with Alzheimer's are no different; so we could put a chair away from the main things going on in the house for them to go and think over things on by themselves if they like.
The author says we should look out for any uneven or cracked or pot-holed paving and repair it.
She says being close to nature can make people feel better. So things like bird tables and wind chimes might be nice for them to look at and hear.
She says if the person with dementia likes gardening, whether that be planting things or just feeling the earth run through their fingers, we could try to get a raised flower bed made about three feet high, raised so it can be reached comfortably and people can plant things in it without having to bend right down and risk straining their backs. We could put some flowers or herbs in it so the person with Alzheimer's disease can tell what it's there for. The author says nice scented herbs like thyme, sage and rosemary can be good ones to use, and parsley can taste nice.
She says colourful herbs and plants can be nice. But she says since it won't always be easy to distinguish between edible plants and ones that might even be poisonous, we should check with the local poison-control centre to see if all our houseplants and the things we've got in the garden are safe if eaten. She says people with Alzheimer's often mistake plants for food.
She says anyone with quite a big garden could create paths for the person with Alzheimer's to walk along, with pretty plants and flowers on either side to look nice and also to act as guides for them to stay on the paths, to keep them away from parts of the garden that might be uneven or that we'd rather they didn't go in for other reasons. Looking at pretty plants can be soothing.
She says putting a bench or outdoor chairs at the end of the path can create a nice social area, and also might be a signal for the person with Alzheimer's disease not to go any further.
She says putting a sturdy six foot fence around the garden can be good because it can stop them wandering off and ending up somewhere where they might come to harm. It can be a relief for us if we know they can't get out. She says it should be made of solid wood or brick, rather than something see-through like chain-link, so they don't see things on the other side and want to get out there, and so they don't get over-stimulated by seeing things outside. Planting nice flowers and bushes in front of the fence can reduce any feelings of imprisonment it might give them.
Wow, trying to remember all these instructions is tiring me out! I need another break from reading this, and perhaps a nap!
The author says sleep deprivation is the main reason people give up and decide to put loved ones with Alzheimer's in a home, because it can be very difficult if a person with dementia perhaps takes naps in the afternoon, and then goes to bed early, and rises not long after midnight feeling all lively and ready to wander around and do who knows what, just when the carer's desperate for some sleep. She says some people with Alzheimer's don't wake up at night, but some do, and especially if they did shift work when they were younger, night-time might seem a good time to be up to them.
But she says if they won't sleep through the night, it isn't necessarily to do with the disease. Wakefulness might be to do with simple things like feeling discomfort because of a cold, wanting the toilet or wanting the window open, or being hungry or thirsty but not having the language skills to say so.
It could be pain due to arthritis or something. So if we take them to the doctor, something might be diagnosed that might be able to be sorted out with painkillers or other medication, and then they might go back to sleeping through the night again.
The author says one woman with Alzheimer's had horrible nightmares, and her husband didn't understand why, until their cable service was disrupted so they couldn't watch television before they went to sleep. They had always watched the news together before they went to bed. As the wife's ability to comprehend what was being said disappeared, she saw all these horrible things happening on the screen. Some people with dementia can't distinguish what's going on on television from what's going on in the room anyway. When they stopped watching the news before bedtime, she stopped having nightmares, so then her husband realised it must have been the news on television causing them.
The author says there are things we can do so we don't have to be so worried about them waking up and getting up in the night, such as putting away all dangerous things in the house where they can't get them, putting some kind of childproof locks on cabinets, and putting bells or those travellers' locks that make a shrieking noise when someone turns a door handle on the doors to outside. As well as that, we could make it more difficult for them to open outside doors and put gates on the stairs to stop them falling down.
She says it might be possible to get them to sleep by playing or singing quiet lullabies in the bedroom, or songs we know they enjoy, or even reading them some poetry that has a steady regular rhythm.
She also says if they keep having naps during the day and then hardly sleeping at night, we could work out what times they tend to take their naps at, and then go for a walk with them ten or fifteen minutes before each nap, trying to keep them awake all day so they sleep for longer at night.
She says sometimes naps can mean the person's bored, so finding them new things to do might help. Also, going for a stroll in the evening might relax them ready for bed. And warm milk and a back rub could be soothing as well.
Sleeping medications might be necessary if other things fail. The author advises we tell the doctor what other drugs the person with Alzheimer's is taking to try to avoid an adverse drug reaction, and that we tell them what diseases they've got and how old they are.
She says perhaps we could ask some relatives if they would be willing to stay in the house some nights to be on guard, maybe taking turns, so we can sleep easily, and recommends we try to get a professional in occasionally to sit guard.
You are only young once, but you can stay immature indefinitely.
First you forget names, then you forget faces, then you forget to pull your zipper up, then you forget to pull your zipper down.
The author says if we notice that the behaviour of the person with Alzheimer's disease has changed recently, it might be as well to get them seen by a doctor, since the change in behaviour might not have to do with the Alzheimer's, but perhaps with another illness, or something else causing them discomfort. If they're miserable, agitated or aggressive, they could be in some kind of physical pain or discomfort, such as having constipation, a sore throat, a headache, earache, a stomach ache, arthritis, or something else.
We could first think through a list of things that might be wrong with them and try to work out or investigate which is the most likely. The author gives several possible options, both for if they've just started to seem uncomfortable or agitated, or if they've seemed out of sorts for a while:
The author advises we check often to see if they're physically comfortable. That way, we can avoid some awkward behaviour before it starts.
The author gives some examples of the kinds of things we could say or do when the disease makes the person behave in ways we find awkward or annoying:
If they forget an appointment or something similar, rather than being irritated with them because of their forgetfulness, which they can't help, we could try and brush it off, by saying something like, "Oh well, doctors are always running late anyway."
They might say they're hungry only ten minutes after we've eaten. Instead of telling them we've just eaten, we could distract them, perhaps by telling them about something going on outside or coming on on television, or maybe by offering them a cup of tea and a small snack or something.
If they go shopping on their own, it's best if they go to places where the shop assistants know about their dementia, so if they give them the wrong money, for example, the shop assistants will hopefully just help them get the correct amount.
If they do everything much more slowly than they used to and slower than we would like, the book The Selfish Pig's Guide to Caring says if we accept the fact that we're living on their time frame , rather than the one we used to be on, a lot of the frustration can disappear. In other words, if we stop thinking of ourselves as being the type that rushes about getting lots done, and we think of ourselves as not being in any hurry so we can afford to wait five minutes while the person with dementia walks down the hall or something, it'll be better for our peace of mind than if we were constantly wishing they'd hurry up.
It says if we do suspect they're doing something just to annoy us, taking on an authoritative tone whenever we want them to do something might help.
If they keep asking the same question over and over again, they might not really want it answered. The book Learning to Speak Alzheimer's says there might be an underlying emotion behind the question that we can spot by looking to see their expression and that kind of thing. The author says the most common questions people with Alzheimer's disease ask are "What's the time" and "Where is my mother" (or father). She says the question about time means the person's asking for something to occupy their time. I suppose if they sound a bit peevish, they might be thinking time's dragging and hope it's getting near the time to do something more interesting like eating.
She says the question about where there parents are means they want comfort or reassurance.
I remember someone with dementia who kept asking the same questions over and over again, like, "Have you done anything special recently?" It was a bit irritating. I heard someone told her they were fed up of her phoning them up and repeating the same old questions, and it made her cry. I didn't know whether to bother giving her proper answers to her questions, since she'd asked the same thing only a few minutes ago and would obviously forget what I said within thirty seconds or something. Maybe her underlying emotion was wanting to chat. Perhaps if I'd asked her about her early memories or something, she'd have liked it.
The author says it's best not to try and help the person remember something. If they've forgotten it, it might be gone for good, and trying to pressure them to remember it might just mean they feel awkward and a failure. So instead, we could just change the subject if we ask them about something and they can't remember it, or say something about it ourselves, trying to be entertaining if we can.
It's possible that the person with Alzheimer's disease might not be able to distinguish things going on in their fantasy world or on television from real life. We don't have to keep correcting them; we can sometimes just reassure them.
The author gives an example, saying a husband and wife were watching a conference on television, and the wife, who had Alzheimer's disease, grew more and more agitated. Eventually, her husband turned the television off to find out what the matter was, and immediately She breathed a big sigh of relief and said, "Thank God! I didn't know how we were going to feed all those people." She'd thought they were all in her living room.
Her husband said, smiling, "I took care of that. Now there are just the two of us. Let's go and eat. I'm hungry."
He didn't belittle her for thinking what she had or try to reason with her about all the people only being on television; he simply reassured her, and then turned their thoughts to something nice.
If the person with Alzheimer's disease seems frustrated and we don't know why, the author says it might be because they're trying to do something but can't, or would like to tell us they'd like to do a certain thing but can't. She advises we distract them with another task or food or something else.
The author says that in the late early stages of Alzheimer's disease, people can lose the ability to make good judgments about their safety and comfort. For instance, they might put their hand on a hot stove, burn themselves, and ten minutes later, do the same thing again. Or they might go out in the winter when it's freezing cold with no winter clothes on. So she advises that we check for problems like that.
She says since people with Alzheimer's disease can have trouble working out what order to do things in, we can help them by taking away some of the decisions that need to be made. For instance, if they need to clean their teeth, and we turn the water on and put toothpaste on the brush before they go in the bathroom, they at least won't have to work out that they need to do those things before they brush their teeth. She recommends we don't embarrass them by telling them we've had to do that.
The author advises we try to take over any writing chores the person with Alzheimer's has to do before they get so difficult for them they can't do them and trying becomes frustrating for them. She says if they are frustrated, we could try to distract them with something else.
She says if they lose their ability to read, it's best not to talk about it or ask what they're reading if they're looking at a newspaper or something. If they're getting something out of it, whatever it is, that should be good enough. She says there's no need to take away books and magazines if they're used to them being around.
The author says when we notice they're losing their ability to understand numbers, we'll have to be ready to take over or supervise the things they used to do involving working things out with numbers, such as paying bills and things, setting the oven timer, measuring ingredients for recipes, and all kinds of other things. She says we should try not to make much fuss about it, so they don't feel as if control has been wrenched away from them and they're a failure.
The author says that though in some situations, their slower reaction times will put their own or other people's safety in danger, such as with driving or looking after lively toddlers, so they'll need to give things like that up altogether, there are other things they might have enjoyed doing where small or big adjustments could be made to make them safer so they don't have to give them up absolutely. For instance, someone who used to love playing ball games could still enjoy a game where a big ball was gently thrown at them repeatedly, provided they could catch it so it didn't hit them.
The author says a lot of people with Alzheimer's disease stop recognising things, especially small objects like knives, forks, keys and so on.
She says it's best to take away from them all objects they've stopped recognising so they don't confuse or misuse them, even if they're things that have been useful to them up until then like dentures, hearing aids and spectacles. Explaining what they're for over and over again will only lead to a sense of failure and frustration and confusion when the person can't take the information in for long.
The author says when the part of the brain that controls impulses is damaged, people with Alzheimer's disease might start to say exactly what they think no matter how embarrassing it is. For instance, they might tell the boss's wife her breasts look big.
I remember being told about someone's aunt who always used to tell them off when they even used a hint of bad language. She was very prim and proper herself. But she got dementia and went into a home, and when they went to see her, she would always use really bad language and say rude things about the staff there.
The author says we'll have to decide where we can still take them if they start saying inappropriate things, but the things will be easier to overlook if we recognise the person isn't deliberately trying to embarrass us; it's the disease that's made them go like that. In fact, she says some people calm themselves by repeating to themselves, It's not the person; it's the disease three or four times whenever the person with Alzheimer's is embarrassing them in public.
The author says that when the disease gets worse, they'll stop doing that.
She says anyone who had a difficult relationship with the person they're caring for before they got Alzheimer's disease might think the person is deliberately being annoying, but it won't usually be the case. She says anyone who thinks it is though could discuss the matter with someone like their doctor.
She says another thing that can happen is that they can have outbursts of emotion that swing quickly from one extreme to the other and back again, like laughing then crying then laughing again, all within the space of minutes. She recommends we just tolerate them, knowing they'll be over soon.
The book Alzheimer's Exercises That Stimulate the Mind gives tips on coping with weird and embarrassing behaviour. It says people with Alzheimer's might often do strange things like washing their dentures in a cup of coffee in a restaurant or taking clothes off in public, or they can react to things far more emotionally than could be expected. It gives advice on how to react. Here's the kind of thing it says:
The author of the book Learning to Speak Alzheimer's says the person with Alzheimer's disease might feel awkward at family gatherings for special occasions, partly because they might perhaps have once been heavily involved in the preparations but now they feel useless not doing anything. She recommends that if there are still simple repetitive tasks they can do to help, we try to persuade them to do some.
But then if the kitchen's too busy, it could just make them confused and agitated. The author recommends we plan beforehand to make it so they're not over-excited by being with several people at once, and that we could arrange who's going to take them home if they start to act up. But she says it's best not to risk embarrassing the person with Alzheimer's by letting them know that's what's happening.
The author says sometimes, damage to the part of the brain that helps people control impulses means people behave in inappropriate ways they'd never have behaved in before, trying to get sexual at inappropriate times, for example. She says a bit about that.
But she says sometimes, behaviour that might seem sexual might not be really. For instance, a man who seems to be masturbating might really need to urinate. Or a woman who starts undressing might just be too hot, or they, too, might need the toilet.
She says if we feel sure their behaviour is sexual, sometimes, giving them a back rub or a temple massage or something like that might be good enough to stop them feeling so sexual.
The years between fifty and seventy are the hardest. You are always being asked to do more, and you are not yet decrepit enough to turn them down.
--T.S. Eliot, quoted in Time, 23 October 1950
Life is one long process of getting tired.
--Samuel Butler, Notebooks
The author of the book Learning to Speak Alzheimer's says it's important that we look after ourselves so we don't get too exhausted or fed up to cope any more. She says sleep deprivation's the main reason carers can't cope any more and put the people with dementia they're caring for in a home. She says she knows it's bound to be difficult for us when we feel the need to keep awake because we're scared that the person with dementia might harm themselves or wander out the door while we're asleep, and because they're often awake when we're trying to get to sleep. But she recommends we at least try to sleep, perhaps trying to get sleep when they choose to have their own naps. Of course, there's always the worry they'll wake up and do some damage whatever time of day we sleep.
Trying to get relatives and people from outside in to help care for them could mean we at least get a bit of sleep time while they're being supervised.
She says it's vitally important that we get time on our own sometimes to de-stress and do the things we want to do. So it's essential that other people take over the caring for a while sometimes, so we can have the freedom to go out and do what we want to do. She recommends we set aside a specific time every day just for ourselves, to relax or do whatever we want, and stick to it, making arrangements for the care of the person with dementia while we're gone as far as possible. She says if we don't have a set time, we might just keep telling ourselves we'll get around to it when we're not so busy, and never find the time, so it's best to try and arrange a time if we can, even if it's only fifteen minutes, and try and either get some help during that time, or take our relaxation time when we can be fairly sure the person we're caring for will be safe and quiet.
She recommends we set aside a specific part of the house to be our resting place where we put soothing things to help us relax, like perhaps a bowl of fish, some potted plants, especially nice-scented herbs, a basket of pine cones, some pictures and photographs on the walls of things that bring back nice memories like places we enjoyed going with people we were fond of, and so on.
She says eating healthily and exercising can go some way towards keeping us emotionally healthy and strong. She says there might be exercises we could do every day actually with the person with Alzheimer's, such as walking and even swimming while they still can. She says it's been found that when people with dementia do more exercise, it seems they need less medication for heart and blood pressure problems and arthritis and things. So more exercise could benefit both of us. It could help relieve nervous tension building up in us, especially if we can manage to do some vigorous exercise.
I've also heard of research that found that old people who exercised a few times a week were less depressed than old people who didn't. It might have been the exercise that caused that, or that while they were exercising, they were enjoying each other's company.
The author suggests we could use times when we exercise together to have nice chats as well. She says a few things we could talk about when we're outside together could be the different kinds of birdsong we hear and other sounds, nice fragrances in the air, the different types of bark on the trees, and the nice feel of leaves and flowers we can touch.
I'd like to do more exercise; but I wonder what we could do. I'll have to think about that. Perhaps we could go out more. She also says there are videos/CD's and things with exercise programs on specially designed for older people that we could do indoors. I'll perhaps look out for one or two.
She also says some household tasks can use up some energy, so the person with Alzheimer's disease could help with some of those if they're easy enough, though in the later stages of the disease, we might have to show them how to do them first because they might have forgotten. The author says once we've reminded them though, if the chores are simple and repetitive, they might do them for some time. And besides making life easier for us, that'll be a good opportunity for us to praise them so they'll feel better about themselves.
She recommends we exercise our brains as well, by doing things on the computer, and maybe doing things like jigsaw puzzles and other things if we like them, and maybe things like listening to music or even playing it, and reading, perhaps to the person with Alzheimer's disease as well as just for our own entertainment or whatever. Or maybe we could learn up about something we've always been interested in for pleasure in the times we feel free enough to.
She says if we don't think we've got time, we could ask people to supervise the person for us while we take time off for an hour or so, perhaps sometimes longer. She says perhaps even a local teenager might be able and willing to help sometimes.
She suggests we can reduce the amount of time and energy we spend doing some things, for instance by buying shopping online.
She says there's quite a bit we can do to pamper ourselves even if we only take less than half an hour's "me time" a day, such as spending the time sitting in the park reading a magazine; or spending it sitting outside listening to the birds, or sitting back soaking our feet, or chatting to a friend on the phone, for instance.
She says one thing to watch out for is that if family members only sit with the person with Alzheimer's for a short time, they might not understand how seriously affected they are and think we must be exaggerating. Perhaps if they look after them for a bit longer sometimes they'll find out. If they're too critical, we might just have to ask that they don't visit very often and try to find another source of help.
The book The Selfish Pig's Guide to Caring says if we're frustrated or disappointed by friends or family who say they'll help but then somehow never do, it's best to just stop asking them and look for others. Carrying on trying to persuade them will probably just be more of a drain on our energy than it's worth.
It advises that if the stress of looking after the one we're caring for is getting too much for us, we can likely lower our standards a bit without them minding much. For instance, we could try not jumping up to do what they want the first time they ask sometimes, when they're asking for something that isn't important. Or as long as the house is reasonably clean, we don't need to feel we have to worry about making it spotless.
The book The Selfish Pig's Guide to Caring says it's very important that we get some information or training about how to lift the person we're caring for, or we risk injuring ourselves, particularly our back. It says the trouble is that no one will come forward and offer to train us, as if we're just expected to do the job of lifting and moving them around all by ourselves without help, and that's completely opposite to the way it would be if we were doing caring for a living, where if we weren't trained, there could be a media scandal, and there are rules that say people have to be trained before they can do the job! Why anyone should imagine it should be any different for us is a mystery. It says people doing paid caring for a living would have training, specialised equipment and assistance to help them move a person, none of which is automatically available to us.
The book says there's a surprising amount of equipment available that can help with various things. Maybe if we ask at the local hospital or social services, they'll be able to tell us if there are any places where there's a lot on display. Some things might well be small and affordable, but other things not so much. Perhaps we could at least try to get a grant from social services or somewhere to help get some. The book says if we see some advertised, it's best to get independent advice on how good it really is and whether it would be suitable before we get it.
I know there are things around that can make things easier, like beds you can press a button on and the top moves up so it sits the person in it up; or there are chairs it's possible to press a button on and the back moves forward or backwards and the seat can be moved up or down, to help people get up from it or sit in it without falling out. They're expensive though. And I know it's possible to get little things as well that can help people do quite a number of things.
The book says it might be obvious, but for anyone who's been so concerned for the person being cared for in other ways that it hasn't crossed their minds, we can do things around the house to prevent the person falling, which helps us because we don't have to risk straining our backs trying to get them up afterwards. So, for instance, if they fall on their way across a room, it may be that they tripped over the corner of a rug or something, so removing it would remove the hazard.
The book says taking care of our mental health can actually improve our physical health, partly because stress and anxiety makes us tense, and tense muscles can get strained more easily and start hurting anyway if they're too tense for too long. So doing everything we can to stop caring from being so much of a burden, and taking time to relax, will help us to carry on longer.
The book says anyone whose back does already hurt should get help, rather than ignoring it and carrying on because they think they need to and risk it being hurt worse.
The book says keeping fit can be awkward for a carer, because the person we're caring for will probably be walking around very slowly, and slowing ourselves down to their pace will make us less fit, but at the same time we might have to do things sometimes that require strenuous energy, for instance if they fall down and we need to lift them up, or if we need to move them from a bed to a chair and so on, if they need it. or we might have to do several things using muscles we wouldn't normally use because we're in odd positions. The book recommends we find an exercise regime to warm up our muscles gently, and use it regularly, so they're not strained by suddenly having a lot more strain put on them than usual.
It says there are ways bending and getting into awkward positions can be reduced. For instance, we won't need to bend down and clean the bath anywhere near so much if we put bubble bath in it. It doesn't get a soapy rim around it. But it says don't use oils, because they might make the bath slippery. Actually, I've noticed it's easier to clean the bath if you give it a scrub while the water's just begun to go down, rather than waiting till later when the stuff seems to be more firmly stuck on it.
The book says there's a "handbook intended for paid managers of paid care-workers" called Safer Handling of People in the Community that describes ways of lifting and moving people. The handbook says people shouldn't use the techniques unless they've been trained. But the selfish pig book says since training isn't readily available for unpaid carers, using the techniques without training might be all the likes of us can manage and much better than what would be on offer to us otherwise.
The book quotes the care handbook giving advice on how to help someone up from a chair:
Positioning prior to standing from chair/toilet/ commode/bed etc
Ask the person to shuffle or rock on his bottom to the front of the chair
Check the person's feet are flat on the floor, hip distance apart; not tucked under the chair. It may be helpful to have him position one foot slightly forward of the other
Ask the person to lean forward so he has a 'nose over toes' position
Gentle rocking of a person forwards and backwards sometimes helps build momentum for the move
Ask the person to push up on the arms of the chair into a standing position. As he stands, ask him to look up and ahead, not at the floor.
The author of the selfish pig book quotes other advice the handbook gives, including how to help someone up after they've fallen:
Assisting the fallen person up from the floor
The uninjured conscious fallen person:
Stay calm and remain with the person, don't let him hurry to get up
Place a pillow under the person's head and wait until he feels ready to try to get up
Encourage the person to bend up both knees (one at a time) and roll onto his side, and then push up into a side sitting position
When ready, ask him to roll onto all fours
Bring a low stable chair or stool to the person's side
Encourage the person to place his near hand on the seat and bring his near leg through so that he is able to push up onto the near foot
Ask the person to push down on his raised knee with his other hand
Encourage the person to push down on the seat and through his foot while swinging his hips round to sit onto the seat.
A carer should never manually lift a fallen person up from the floor except in a life-threatening emergency, and then only after thorough assessment.
Some of that doesn't seem very clear! I mean, for instance, what is a "side sitting position"? So I can see why you'd need training in the techniques as well! Perhaps a good idea would be if we practice and experiment by trying them out on ourselves so we can find out how they work best before we ever try to coax anyone else to use them.
But the book says the handbook's clearer than the bits quoted, because it contains pictures illustrating what it means. So that book, or a reputable one like it, would probably be a good thing to get if we can. It might also be worth trying to get social services or another organisation to send an occupational therapist around to teach us techniques, but I don't know if they would. It might be worth asking though. Hopefully we could get advice though from a charity for old people like Age Concern.
The author of the book Learning to Speak Alzheimer's says there are specific relaxation techniques she's known to work well with people, that might help us calm down and so cope better emotionally with stressful situations. She says it might also be possible to find local clinics that teach relaxation exercises by asking the doctor if there are some in the area. Here are a few tips on relaxation she suggests herself:
One thing she suggests we could try is to first close our eyes - although I don't suppose that's actually necessary - it just shuts out the sight of things around us that our minds might otherwise start worrying about; and then we take in a very slow, steady deep breath through our nose, and then slowly let it out through the mouth. She suggests doing that a dozen times.
Oh yes, I think I've heard of that exercise. I think they say breathe in through the nose because it doesn't let so much air in at once so you breathe it in a bit more slowly. Actually I'm not sure it makes that much difference. But anyway, she says breathing slowly and steadily can be calming, and we can do the technique anywhere we happen to be when we feel a bit stressed.
The book The Selfish Pig's Guide to Caring says we might sometimes realise we're getting stressed and angry and tempted to do something bad to the person we're caring for. The author says in the moment when we're tempted, we can try backing away and taking a few deep breaths as a very short-term remedy. He says other books explain that we might get more stressed or angry than the provocation really deserves because our bodies are programmed to have strong reactions so they could cope in the old days when big wild beasts might suddenly have appeared at the door of the caves we were living in and we would need to react aggressively or run away quickly to survive. So when we feel more anger or stress than we need to when the person we're caring for nags us to do something or says something annoying, it's as if our body's reacting to them as if they're a big woolly mammoth or tiger or something that needs to be fought. Realising that and taking a few very slow steady deep breaths to calm down can sometimes help us relax.
He says other ways of getting rid of the energy caused by any anger we have could be doing vigorous exercise or getting a punch bag. But he says long-term, what can help is if we somehow come to think of our caring role as much more valuable than we have up until now. If we think of ourselves as doing something of great worth, we won't feel so much like lashing out at the person we're caring for in frustration.
I suppose one way what we do could be worthwhile is if we make notes of all the lessons we learn that could be valuable to other carers and pass them on, so we know we're doing some good.
But as for short-term relaxation, another thing the author of the book Learning to Speak Alzheimer's suggests is sitting down and focusing on letting go of any tension we realise is in our muscles, and think about them getting nice and relaxed, and just focus our minds on that for a while rather than on the stresses of the day.
She says one way of doing that is first thinking of our toes relaxing, then our feet, then our legs, and so on up to the top of our head.
She also says it's important that we eat healthily, because even that could have an effect on our emotional health. She says it might seem like too much like hard work to prepare healthy meals, but recommends we keep healthy things around the place, like fruit and vegetables we could nibble on.
Another thing she recommends is that we plan ahead as far as we can, thinking of all the things we need to do aside from the daily routines, and planning where we can fit them in, prioritising them as far as possible according to how important they are.
She recommends that if we feel caring's taking an emotional toll on us, we could see the doctor.
I am getting to an age when I can only enjoy the last sport left. It is called hunting for your spectacles.
The aging process has you firmly in its grasp if you never get the urge to throw a snowball.
The author of the Book Learning to Speak Alzheimer's says since planning ahead and organising things can be so much more difficult for people with Alzheimer's disease, they can sometimes just sit around, and it might look as if they're just doing nothing, when really, they'll probably be engrossed with thoughts about their disease, unable to make the best of the ability they still do have because they've lost the ability to plan and organise the hobbies and things they might have once done to make their life more enjoyable. So it might look as if they can't be bothered to do anything, when really, they'd love to, but they need someone to organise things for them and prompt them to do things they used to be able to do before without needing reminding, in the days when their concentration skills were better and they could be more imaginative about what they could do. If they can't do things they didn't have any trouble whatsoever doing before, it might well be because even simple activities require planning so as to know what order to do things in, so they require abilities that might be being lost to them because of their Alzheimer's.
So we could set up activities for them and do them with them.
The author recommends we sincerely praise them a lot when they do something well, to encourage them to want to do more and to make them feel uplifted.
If we can convince other people that it might be fun for them to come and join in, all the better. It might make the exercises more enjoyable for us and mean the person with Alzheimer's isn't so lonely, and that we've got someone to talk to.
We'll need to find an activity they enjoy doing before asking anyone else to come in and join in though, so we know we'll be able to get on with it, rather than having the problem of finding something easy and enjoyable enough to do while they're there. Still, if we do have to do some of that, it shouldn't bother us much, because the important thing will be that the person we're caring for enjoys themselves, rather than that everything goes to plan.
If we can invite some of their old friends in, sometimes it might just be fun for them to chat and reminisce. If the person we're caring for is beginning to have difficulty talking, We could try to think of a topic of conversation we think they enjoy, such as a time in the past when they and their friends did things together that they'd enjoy thinking of again, and start it off to make things easier, if no one else does. It might be that they find it easier to talk about something familiar and enjoyable than something they're not so used to. So they might have more fun.
When we do activities with them, the book says it'll help a lot if we can try and eliminate as many distractions as we can that might make it harder for them to concentrate, such as the television or radio being on, other people in the room doing something else that's a bit noisy or distracting, and so on.
The book says people with Alzheimer's disease like to have routine, because they know where they are more; so it's best to have some kind of daily routine, for instance fairly active exercises in the morning and more relaxing activities later in the day, so they've got some idea of what to expect, before the disease gets so bad they won't know what to expect whatever happens.
It says it's best to plan each activity to last no more than half an hour, because of their difficulties concentrating and so on. But it says if they do something over and over and over again, it doesn't matter, because what's important is that they're enjoying themselves, not that they finish what they're doing efficiently.
It says in the later stages of Alzheimer's, we may have to demonstrate to them how a task is meant to be done before they do it. But if it's an easy repetitive task, they might then do it for some time. If it's a chore they're doing, the book says it's best not to complain that they're doing it repeatedly, but to thank them a lot for helping.
The book recommends we gather and prepare everything we need for every activity in advance, so we're not in the awkward position of making them wait while we get something, when they might wander off or who knows what.
I can't take any more of these instructions in right now. I need a break! I'll be back later!
The author says it's best to have a structured routine, so the person with Alzheimer's expects to get washed and dressed at roughly the same time each day and so on, and then we can arrange the timing of activities to fit into the routine in several places.
She also says it's best not to ask them if they want to do the activity, since then they might say no, when if they started it, it might turn out that they really enjoyed it. So it's best to just start it with them or tell them when we're going to start it. We can look at them to see if they are enjoying it, and we can always stop if they're not.
The Book suggests quite a few activities we could get the person with dementia to try, to make life more fun and interesting and to keep their mind in as good a working order as they can. But there are loads in another book I've got, the one called Alzheimer's Activities That Stimulate the Mind. I'll think some through. It suggests quite a variety, from physical exercises, arts and crafts, mental exercises, and so on. It says they're a guideline; we can use them to give us ideas to invent our own, as well as using the ones they suggest themselves. It claims that doing the exercises will often slow down the decline of the abilities of a person with Alzheimer's disease so they can do more things for themselves for longer, because they keep the mind active. But it says the most important thing to remember while we're doing one is that it ought to be fun for the person with Alzheimer's.
It recommends we don't expect them to do an activity for longer than half an hour or an hour, so we can plan for that.
It says the exercises are designed to be enjoyable both for the person with dementia and for us, and they'll help relieve us of the stress of finding things for the person to do, especially since some are for people with early Alzheimer's, some for severe Alzheimer's and some for the in between stage of it.
It does recommend that if we try to encourage the person with dementia to try one and they seem agitated, we give up the idea of them doing that one. They might have lost too much of their ability to concentrate on it or something, or they just might not like it. It says we'll need to approach them with a lot of patience and care and should take things slowly, since they'll have lost the abilities that made them as alert as us.
But the book Learning to Speak Alzheimer's says that if they're getting frustrated, angry or confused, it's best to check whether something else could be causing it before we give up on the idea of doing an activity with them, because it might be something else. It could be either.
The book Alzheimer's Activities That Stimulate the Mind splits Alzheimer's disease into four stages, giving ideas for activities we can do with a sufferer at each stage:
Stage one is the early stage, when there is some memory loss, but sometimes the memory can seem perfectly allright. It's better at some times than at others. It's worst in new surroundings.
People at this stage can still perform most of the activities of daily living, such as washing, dressing and feeding themselves, and they can still do some housework.
They're still able to express their needs and understand what other people are saying to them.
They'll notice they're getting forgetful, but might put it down to stress or lack of sleep, both of which can cause forgetfulness. But they might start feeling bad about themselves because of it.
People in this stage are more forgetful sometimes than at other times, as they are in the first stage, but they'll be less able to dress and feed themselves, or wash. They'll sometimes mismatch their clothes or forget to shave or have a bath. They might need the person caring for them to remind them or explain what to do. They'll often become agitated when they are reminded, and their memory loss gets worse.
They'll need more supervision in this stage. Organising meals, paying bills, and major decisions will usually have to be taken over by the carer; but the person with Alzheimer's might still be able to have a say in things.
A person in this stage might start isolating themselves from others, as they realise they're going into a mental decline and need more help with things, and might feel awkward and upset about it. Doing activities with them might boost their self-esteem and help them keep the skills they've still got for longer.
This is an advanced stage of the disease, where verbal reminders and directions for doing things are no longer enough; and they will need constant supervision. Their language skills will have deteriorated, and may have got so bad that they only know how to say simple phrases or familiar expressions.
They might not know how to express their needs clearly or understand what others are saying to them, and they often get agitated because they're confused.
They'll need to be dressed and have their food set up for them. The person caring for them will have to bath and shave them.
It's common for them to become doubly incontinent at this stage of the disease.
Usually, they won't be able to do things like shopping, bill paying and decision-making. They might still be able to walk and feed themselves, but other things will have to be done for them to some extent.
The things they can still do for themselves might go some way to helping them regain a bit of self-esteem, and could help them keep the skills they still do have for longer. And for the carer, doing fun activities with them might be enjoyable and like a bit of a break.
This is the end stage of Alzheimer's, where the sufferer will be dependent on others to do everything for them. They might completely lose their ability to talk. They might not be able to move, speak or swallow.
But there are still activities we can do with them, and they might provide a relaxing and even enjoyable break from the turmoil of looking after their daily needs.
With each activity the book suggests, it says what stage of the disease it can be done at. Here are quite a few of the ones it suggests:
The book says if the person with dementia can be involved in doing some kind of craft they enjoy, it can boost their self-worth by giving them a sense of achievement, especially if what they've made gets given as gifts to friends, or sold, perhaps to raise money for us or a charity, or donated to a good cause, such as one where squares of knitting can be donated and they're made into blankets for people where there's a shortage of them. Or things they make could be displayed around the house to look pretty, such as being hung on the wall. It can sometimes make people feel especially uplifted if they're making something that's actually useful, like a waste paper basket or something knitted, so they can feel pleased that they can still contribute things of value even though they're losing many of their abilities.
And if the crafts are displayed around the house, it can start off conversations with friends and family, so it can improve the social life of the person with Alzheimer's.
It says even if they do an imperfect job, we shouldn't mind that, since they'll feel more of a sense of satisfaction if they've done the job, even if it's slightly imperfect, than they would if we took it over and did most of it for them. Then again, sometimes, they can do the bits they can do best, while we do the rest.
There are things it's possible to get that can make it easier for people with impairments to do crafts, such as extra large knitting needles.
It says bear in mind safety precautions, like good lighting, supervision, proper use of any knives and scissors, non-toxic materials that won't aggravate anyone's allergies, and so on.
It says buying some things from arts and crafts shops can be expensive, but quite a lot of things can be bought more cheaply in the supermarket.
It gives lots of ideas. I think you need to be quite familiar with teaching or doing arts and crafts before you'd really know what you were doing though.
Trying them all would take a lot of organisation and time. It would be good if care homes routinely got in volunteers or employed someone to do that kind of thing though.
One simple thing that won't take much organisation or skill for us to arrange is if we get some play-doh and encourage the person we're caring for to make objects or shapes with it or patterns in it. The book suggests we could give them a rolling pin, and perhaps a pastry cutter so they can cut out shapes, although we'll have to be careful they don't think it's food and eat it. But the book says the reason play-doh's recommended rather than clay is because it's non-toxic, so if they did eat it, it wouldn't really matter.We could try getting play-doh in several different colours to make it more enjoyable for them.
We could arrange for them to sit somewhere where they'll be in front of a table or something where they'll have lots of room to work or play, and then ask them what colours they'd like, and then we could explain to them if necessary how to roll the play-doh out, how to squeeze it into shapes, and so on. We can let them make whatever they feel like making with it.
If there are fairly young children around, they could join in as well, so we've got more companionship and fun.
The book says a lot of people with Alzheimer's have difficulty moving around just because they don't have much opportunity to, so they get stiff and less used to it. It says that's one reason to do exercises with them, as well as the exercises perhaps being enjoyable and relieving tension.
It says before we do any exercises with them, we should make sure everyone's wearing loose-fitting clothing that won't restrict movement, and that they're not wearing anything that would catch on anything or fall off, like jewellery or glasses. And it's best to have water on hand for anyone who gets thirsty with the exertion.
It says exercise should only be done after consultation with a doctor to make sure it's allright to do.
It says the more people who take part in an exercise session the better. It can include children and anyone else who's around. It'll be good if it's a companionable time, and it'll be a good way for everyone in the place to be more active.
It says before meals is a good time to do exercise, or else it's best to wait till at least an hour after a meal.
It says it's best to start off with just a few simple exercises, and make the exercise sessions longer with more exercises in them as the person with Alzheimer's gets to be able to tolerate them better.
But it says some exercises might be impossible for them because of their physical problems, so it's best to bear that in mind; they might sometimes have to only do some of the exercises or watch the others doing them.
It says everyone should do each exercise it recommends slowly, because that'll increase its benefit and give the person the opportunity to take in the point of doing it.
It says if we can, it's a good thing to encourage the person to do a few simple arm and leg exercises by themselves every night and morning, besides the exercises in the exercise sessions we organise.
It says playing games throwing beach balls and bean bags around is a fun way to keep the body active.
It suggests we end each exercise session with everyone having a glass of cold water and enjoying conversation.
The book gives quite a few other instructions for preparation:
The book says it's very important to do gentle warm-up exercises before the main ones, because otherwise, arthritis and general stiffness can cause injuries to muscles and tendons that aren't warmed up before more vigorous exercise. In fact, if warm-up exercises are done every morning and evening, they can decrease stiffness and even promote better sleep.
Here are some descriptions of warm-up exercises. I'll imagine I'm talking people through some of these. I'd have to repeat what I said a few times, since it recommends that each of the exercises on the list is done five times:
The book recommends we choose a few exercises for each part of the body from the ones it suggests, to make our own exercise regime. But it again says check with a doctor that the people will be allright doing the exercises.
The book says if anyone gets dizzy doing that, it might help if they stop while their head's facing forward and look at something in front of them.
It'll be important to check the wheelchair brakes are on with that one.
This one's nice done to music with a good rhythm.
The book says when the exercises have finished, it could be fun to throw a bean bag around and enjoy some good conversation.
It gives some more advice. It says if we can find songs or tunes with beats that match some of the exercises, it might be good to have music on during some of them. It says it's best to spend longer on the exercises they can do well, and to drop any they can't do well or don't like. And if anyone doesn't like the music, we could try different music or turn it off.
It says we can use our imaginations to add bits to the exercises here and there, like clapping to the music or swinging arms and so on. And sometimes, we can put music on while they're sitting down and suggest they move their arms and legs how they want to the beat.
It also suggests things we could do all together holding hands, like walking in rhythm, three steps forward and one step back, repeated, or two steps to the right and then two steps left. That kind of thing. It says we could use our imaginations to create a good walking routine.
It also suggests we could add affection to the exercise routine, by rubbing the back of the one we're caring for, perhaps by standing in front of them, then turning and rubbing one side of it with one hand, and then turning to the other side and rubbing that side with the other.
It suggests quite a few other exercises and games people can all do together as well.
It says we don't have to have one long exercise session; we could have several short ones if we'd prefer, spacing them out throughout the day.
The book says playing games can cheer people up, because they can enjoy them, and because they have something to look forward to before they play them; and still being able to do them can give them more confidence when they might have lost a lot.
It suggests quite a few ideas:
One thing it suggests is that we could buy a book of card games and learn some and then teach them. Or we could buy some simple board games we know they're familiar with that we could play with them.
It says guessing games might be good as well, such as one wear we could put a number of pennies or beans or something in a jar, (I suppose we'd have to write the number down somewhere in case we forgot it); and then every day, they write a few guesses as to how many are in there on a piece of paper and put them in a box; and when they guess right, we take them out somewhere nice or give them a special treat.
It suggests quite a lot of lively games and others, some it describes how to play. Each one requires certain bits of equipment, some we'd have to buy.
We don't need much for some of them though, like this one, called the grasshopper game:
People in the early stages of Alzheimer's will be able to do this by themselves, but people in the later stages will need help, such as someone putting their hand over theirs to guide a pencil as they draw.
We need a dice, or everyone could have their own if we've got enough. Then everyone needs a bit of paper and something to draw a picture with.
We need a picture of a grasshopper to remind ourselves and everyone else what one looks like.
Everyone throws the dice when it's their turn, and if they get certain numbers, it means they can draw certain bits of a grasshopper on their paper, till they've done the whole thing.
Everyone throws the dice in turn till someone gets a 1. The person who does gets to draw the body of the grasshopper on their piece of paper, but with no head or legs or anything.
Each person has to get a 1 and draw a grasshopper's body before they're allowed to draw anything else.
After someone's thrown a 1 and drawn their grasshopper body, they have to throw the dice every time it's their turn until they manage to get a 2. Then they can draw the grasshopper's head.
Some lucky people might have finished drawing their grasshopper before others have even got a 1 and managed to start.
After a player's got a 1 and then a 2, they're allowed to get other numbers in any order. Getting a 3 means they can draw an antenna, so they'll need two 3s to be able to draw them both. Getting a 4 means they can draw an eye, so they'll need two 4s to be able to draw them both. Getting a 5 means they can draw its mouth. And they'll need six 6s, because one 6 means they can draw one of its legs.
Players are only allowed to throw the dice once when it's their turn, unless they get a number they need, in which case, they're allowed to throw it a second time. If they get a number they don't need any more, like a 2 when they've already drawn the head, they just pass the dice on to the next person.
The winner is the one who gets enough numbers they want so they can draw the whole of their grasshopper first.
It doesn't have to be a grasshopper. It could be some other animal and the game could be adapted to that.
We get a pile of newspapers or magazines. Then we give one or a section of one to everyone playing, and we tell them to find a picture of a particular thing in it, such as a car or a house or anything we choose. They have to find a picture of one and tear it out. Then we ask them to find a picture of something else and tear that out.
If more than one person's tearing out pictures, we could award points for the best one.
It's best to stick to simple objects, such as a box, a moon, a tree, a car, a star, a football, some kind of common animal, and that kind of thing, to make it easier.
If we know they're interested in a particular thing, such as fishing or sport or gardening or whatever, we could ask them to find pictures that have something to do with that.
We'll need to look at the newspapers or magazines beforehand though to check they do contain pictures of what we're asking them to find, since if they don't, the person might find the activity frustrating.
The person with the most points at the end wins. Or if only one person's cutting out pictures, we could have a friendly conversation with them about the pictures and maybe a laugh.
The activity can be used as a game, or else it could be a creative project to cut pictures out and get a big piece of paper and stick them on it to form a collage, or to put the best-liked ones in a scrapbook, or to make drawings of pictures rather than cutting them out of newspapers and magazines.
The game will need several players, or at least two who are playing, not including the one calling numbers.
We need two packs of playing cards. The dealer, who is also the person who'll be calling the numbers, shuffles one pack and then gives all the other players an equal number of cards. It doesn't matter how many. The players put their cards somewhere where they'll easily see them.
Then, the dealer shuffles the other pack of cards. Then they take the top card off the pack and say what it is. The others look at their cards to see who's got that one, and the one who has got it moves that card to the middle of the table.
Then the dealer/caller says what the next card in the pack is, and the others look to see if they've got that, and the one who has pushes it towards the middle of the table.
The game carries on like that till the first person runs out of cards. They're the winner.
Or it could be played the opposite way, where the winner is the only person who's still got cards at the end.
This can be played with people with Alzheimer's disease until their memory gets so bad it wouldn't work.
The rules are that we put twelve items on a table or tray, like perhaps a hairbrush, some keys, some hand cream, a comb, a tube of toothpaste, or other little things like that. Then the players look at what's on the table for about twenty seconds. Then we ourselves point to each item and name it.
Then we put a cloth over the table or tray. We take one of the items away, keeping it hidden from the players. Then we take the cloth off, and they have to try and remember which item's missing.
The first person to get the answer right gets a point. Either that, or we can go round to each one and they can whisper to us what they think's missing, and everyone who gets the right answer gets a point.
We take more items away one by one with them guessing each time what's missing, until there are only about three left.
The person with the most right answers/points at the end can win a prize. Or if there's only one person in the game, they can win one if they manage to get a certain number of points which we can decide on beforehand.
We can then play the game in reverse. When there are only two or three items on the table or tray, we ask the players to look at them for several seconds so they remember what's there. Then we cover the table or tray with a cloth, put one of the items back, then take the cloth off, and they have to work out which item's just been added. We add them back one by one with them guessing what's been put back till there are the original number again.
We put a number of objects in a basket or bag, perhaps a pencil, a thimble, a clothes peg, a key, a screw driver, a watch, a lavender bag, or whatever little items we can think of. Then the players are blindfolded, and they've got to identify all the items just by touching them. The person who can identify all the items the quickest wins.
We don't have to use a blindfold; if we put the things in a bag or pillow case, they could put their hands in without looking.
The more abilities they lose, the less we could put in the pillow case. But we could put in things of different textures, like cotton wool balls, pebbles, a bit of sandpaper, and other little things. We ask the person with Alzheimer's to reach into the pillow case, pick one thing up without looking at it, and then identify it by its shape or texture.
If they don't know what they've picked up, we could help them work it out by asking questions such as, "Is it soft?" "Is it round?" That kind of thing.
If they don't want to reach their hand into the pillow case without being able to see what's in it, we could let them look in it first to see what's there so they stop being anxious about the idea of putting their hand in.
They can dip their hand into the pillow case several times until they've identified everything in it.
Interesting objects might start discussions about things. The game can stop for a while if an enjoyable conversation breaks out.
If they've lost quite a bit of their ability, we could just put one or two things in the pillow case.
We could perhaps play the game sometimes before they need to wash or groom themselves. We could put their toothbrush or hairbrush or something like that in the pillow case, and when they've identified it, we could encourage them to use it and help them. We could try to make it fun.
The book says that could include anything from looking after a potted plant to caring for a big garden.
It says we might be able to enlist the help of volunteers from agriculture departments at colleges and universities or local gardening clubs.
Here are some of the things it suggests:
The person or people with Alzheimer's could grow plants in little decorative pots and then they could be given away as gifts or sold at fetes.
It says African violets are good plants to grow indoors, even on a bedside table, because they're small, easy to grow and do well in artificial light.
It says a lot of people enjoy planting bulbs in flower beds or in big pots in the autumn, and plant nurseries will often donate plants at the end of the season.
Someone with early Alzheimer's disease who enjoys gardening can be encouraged to join gardening groups, and we or maybe someone else could transport them there and back. Or we could take them to visit garden centres sometimes and that kind of thing.
It gives ideas for things we could plant indoors with them.
The book says music can do quite a lot of good when it comes to changing a person's mood for the better, bringing joy or soothing a person, and other things.
It recommends that if the person or people we're caring for enjoy playing music, even if they're not that good at it, we encourage them, since their enjoyment is what counts. Likewise if they want to listen to music.
It says sing-alongs can often be enjoyed, especially if the music has significance for the people singing, such as if it comes from an era they remember particularly well. It says sing-alongs don't all have to be formally organised; we could sometimes just spontaneously burst into song and encourage them to sing along, if we listen to a song we know they like. And if they're songs we know they were fond of in the old days, they could bring back good memories for them that we could chat about with them.
It suggests they might even be able to accompany sing-alongs on a musical instrument like a piano. They could even lead singing sessions if they enjoy that kind of thing.
We could get recordings of songs they like especially so they can enjoy them, and we could encourage them to sing along with them. Remembering the words might be an enjoyable brain exercise for them.
The book says having sing-alongs to nursery rhymes might bring them a smile and a bit of fun, especially if there are children around to sing them too, or they're reminded of old times when they used to sing them to children or grandchildren. They could talk about any good times the nursery rhymes bring back memories of as well. We could ask them questions to encourage them.
It also suggests we could build up record libraries/recordings of songs for seasonal or special occasions, and ask them to choose which songs they would like included.
Playing soft music during meals might sometimes be nice.
It says volunteers might even be willing to come in. That would be especially in places like care homes. It says towns with colleges might have quite a lot of volunteers in them, because there might be choirs and orchestras and little groups of musicians like handbell ringers and so on at universities and colleges who'd be willing to come in sometimes and do little concerts for the people. We could even ask if afterwards, they could show the people how to use the instruments and give them a go if they want.
We could encourage the person or people we're caring for to join in with the music by whistling along, tapping their feet, clapping, or other such things if they like doing that.
Or playing along with percussion instruments might be nice for them. We could even have sessions where some family members come along and everyone sings along to old songs and has something they can use as a percussion instrument. That's if the person we're caring for can tolerate all the noise.
One game we could play with the person we're caring for could be one where we play part of a tune and ask them to guess what it is.
Or we could take turns singing a bit of a song and the other one has to guess what it is.
Or we could say a line of the words from an old song and the other one has to guess what the song is.
Or we could name a song, and both of us could try and remember how the words go.
Or we could try making up our own words to an old song together sometimes. That might be fun if we can manage it.
Another way we could play "Name That Tune" is if there's a group of people, and we select a number of songs we know they'll be familiar with, which would probably have to mean they were all of a similar age, and the tunes were from the time they were between about twenty and forty years old. And they'd all have to have roughly the same ability, because it wouldn't be fair if someone in a later stage of the disease was competing with people in an earlier stage. We put on or play one tune at a time, and the first person who guesses what it is gets a point. We could set a time limit for the game like half an hour, and whoever has the most points at the end of it wins. Or we could set a score that needs to be reached such as ten points, and the first one to reach it wins. Competition can be fun sometimes and motivate people to put more effort into things so they can end up enjoying them more, if they still have the ability.
After someone's made a correct guess, we don't have to move straight on to the next tune; they could spend some time chatting and reminiscing about the things the songs are reminding them of if they like. The game could have quite a relaxed atmosphere.
For this game, we'll need something we can play records/CD's on. We can ask the person we're caring for what their favourite songs are, or the book says we could get lists of old songs from a music shop. Perhaps we could find some on the Internet. It suggests we could ask the person with Alzheimer's to circle the songs they like on a list we give them, and then we try to find them. Or maybe we could find someone with some old songs on a record we could borrow.
This is how the game goes:
We play one song at a time, and after each song, the person we're caring for talks about a memory the song brings back, or says why they like the song. Or we could take turns telling stories.
The book recommends we take half an hour to an hour to do that activity.
It shouldn't be as if they're pressured to tell stories about the songs; the idea is that it's a relaxing time they enjoy.
This will only be suitable for people in the first two stages of Alzheimer's disease. We find pictures of lots of musical instruments, perhaps on the Internet or in magazines. The game can be played anywhere. We show them a picture of a musical instrument and describe it briefly, for instance if it was a piano we could say it's big and has keys and a lid that can be put down over them. When we've described it, they have to guess what it is.
If there are a group of people playing, we can award a point to whoever guesses it right first, or go around the group and they can each whisper what they think it is, and everyone who gets it right gets a point. The first person to reach fifteen points wins. Or it could be a different number of points, depending partly on how many pictures of musical instruments we can find.
We could give the winner a prize or a certificate of achievement if they'd enjoy it.
The book says if the game seems too difficult or they seem agitated, we could stop playing it and choose a different game.
The idea is to help the person relate to the people around them and what's going on, in the most meaningful way they can. The book says sometimes old people lose their motivation to do anything much, and keeping them interested in what's going on around them can make them feel motivated again and give them ideas for things to do.
That basically requires us to often start discussions with them on a number of things they're interested in, as well as on things going on around us, such as what's going on in the neighbourhood, or any new things happening at home, such as bits being redecorated or relatives visiting, and also the kind of things that will be happening in our family, our neighbourhood, our country and the world at the time of year it is, or the time of day it is, and so on. If they're forgetful, it won't matter if we repeat the information.
We can do things that reinforce what we're telling them. For instance, if it's winter, we could show them pictures of snow scenes; or if the spring's beginning, we could show them pictures of spring flowers poking out of the ground or animals with babies. If it's summer, we could show them pictures of people paddling in the sea. In autumn, we could show them pictures of ripe fruits on the trees. And things like that.
We could even write what day it is on a piece of paper or something we stick on the wall every day, or something similar.
And we could put pictures of people up on the wall with the name of the person in the picture underneath, for instance with pictures of relatives.
We could ask relatives to make special efforts to discuss the kinds of things we're talking to them about with them as well.
Sometimes, we can do things with the person we're caring for according to what information we have about people and things going on around us. For instance, if a relative's not very well, we could ask them to help us make a get well card for them.
Also, the book says we can pay attention to stimulating each of their senses so they don't deteriorate so quickly:
We could do activities with them where we get several things together with strong smells, some of them contrasting a lot with each other. Then we can ask them to smell one thing, and then a contrasting one, for instance honey and then pickles, perfume and then curry powder; and they can tell us how much they can smell the difference, and try to guess what they are. It could be a fun game. It doesn't have to be like a test, just a relaxing thing we can have a laugh over if they smell things they don't like, or that they can enjoy if they do like. And it can start a conversation; for instance we can tell each other about memories the smells remind us of.
We could do the same with their other senses. For instance, we could show them brightly-coloured objects and see if they know what they are, or just see if they think they look nice; we could play them recordings of sounds of nature and other nice things, to see if they like them and can distinguish individual things in them; we can whisper to them sometimes to give them another kind of variation in the sound they here, and maybe we could play musical instruments to them.
As for the sense of taste, we could sometimes give them things with contrasting flavours to see what they think of those. Or the food could contrast in other ways, like some being hard and some being soft. We could give them things to touch that contrast like that as well, some things being hard and some being soft, some being rough and others being smooth, and some being warm and others being cold. We could ask them about which things they like the feel of most, and see if they can describe the things at all. And again, we could have a conversation about what some of the things remind us of.
If we've done any flower arrangements, when the flowers begin to wilt, we could ask the person we're caring for to remove all the petals, and put them on a tray or maybe a flat basket we give them. We can ask them to tell us what kind of flowers the petals are from. Then we could suggest they put their hands on the petals. We could ask questions like "Do they feel nice and soft?" Even if they've lost the ability to talk, they might still communicate yes or no answers, by nodding or smiling and so on.
We could shower the petals over the person's hands or rub their hands softly with the petals.
We could ask them if they remember any times when they got flowers as a gift from anyone, or whether they have other nice memories of flowers.
The book says some old people might especially like reminiscing about the past, because as abilities decline, it's nice to look back to a time when we were more successful in life, remembering past achievements and things we did when we were at our best. Memories like that might be a consolation sometimes, since at least we'll know we used to do some things well. And it can be easier for people with Alzheimer's to remember things that happened years back in the past than things that happened recently, so it might be more fun.
It suggests we can help them remember good times by asking around the family for old pictures and photographs of enjoyable moments, and put them up all around the house. They could be photos of them on holidays, with young children around them, with friends, doing things they did when they were young, and so on. On special occasions, we could put up photos of things we did on those occasions in earlier years. We could give them photo albums to keep in their room and look through. We can ask the person with Alzheimer's to tell us stories about things they can remember that are related to the photographs, and tell them stories we think of.
The book suggests that in nursing homes and places like that, they be allowed to have personal photographs displayed on the walls near them as well.
It says besides photographs of the family, we could get hold of photos of places where they enjoyed going or that are likely to mean a lot to them, such as the town they grew up in. We could try to get pictures of things the way they looked when the person was younger, the way they might remember it. Then we can ask them to tell us stories about what it was like living there, or things they did there, such as what their schooldays were like or what life was like when they were first married. If we know something about that, we'll have more ideas for questions to ask them about their memories.
We could also ask them if they can remember what was going on at certain times like when things of historical importance were going on like the wars, or years that sometimes have great significance to people, like the years when their children were born. It says we could ask them questions with a bit of information in them to help them remember things, such as, "How did you cope with meat rationing during the war?" "Can you remember what you were doing the day men first landed on the moon?"
It says we could play games with them where we pretend to be living in the past. For instance, if we've got some old clothes from then, we could put them on; or perhaps we could get hold of other things from the past, or pretend things we have now are old-fashioned things and pretend to be using them the way people would have in the old days.
One thing we could do is to make a memory scrapbook. The person we're caring for will have to be in the earlier stages of Alzheimer's while they can still write things for it to work.
What we do is get several sheets of paper, write a question about their past experiences on each one, and then they sit at a table with the bits of paper and write detailed answers to each of them. When they've finished, we can ask them to read the answers if they're comfortable doing that. Then we can discuss them. We could ask them more about the experiences and tell them things we remember ourselves, and it could lead to quite a long discussion if they're enjoying themselves and there's quite a bit to talk about.
At the end, we can compile the papers somehow in a scrapbook.
We can perhaps try the scrapbook idea every few weeks with new questions. We could ask other family members to suggest questions and come and join in if possible.
Some of the questions we ask the person with Alzheimer's could be about what their favourite things are, such as the best place they ever lived, the best job they had, the best place they've ever visited, and what their favourite year was. We could ask them their reasons for choosing those things. We could ask what their favourite song is and whether it reminds them of anything good, who their favourite famous person is or was and why, and that kind of thing.
And we could ask them to tell us about all the places they've been to, and where they lived before they were married, and how many brothers and sisters they had, and something about each one. We could ask them what their fondest memory of each one is.
We could ask them what their fondest memory of all time is, and about any funny things they can remember happening to them. We could ask what their best memory is about their schooldays, and what their first memory is. We could ask what their favourite memory as a teenager is, and their favourite memory from when their children were growing up.
We could ask them about the house they liked living in best and what was good about it. And we could ask what they remember about the house they lived in as a child and whether they remember any funny things they did when they lived there.
We could ask what their favourite food is and their favourite drink, and what nice meals they can remember cooking when they were younger.
If they can't write, they could perhaps use a tape recorder and we could transcribe what they've said later, or they could dictate what they'd like to say to us and we can write it down.
The idea is that it should be fun, as well as being brain exercise for them. It might be fun for both of us. And if the memories are good, they might be fun to look back on later.
This is a game where we give the person a pencil and several little pieces of paper or little cards of the kind people might keep to write notes on, perhaps about fifteen or twenty, and we ask them questions that'll have short answers, and they write the answers down, one on each one. They can write the first thing that comes into their heads. There won't be right and wrong answers. We can just discuss them afterwards. They shouldn't be spoken aloud at the time, especially if there's more than one person playing, so they can't just copy each other. If there is only one person, then writing it rather than saying it will still be worthwhile because it will hopefully help them maintain their writing skills for a bit longer.
So we ask the first question. Then when they've written the answer, we ask them to show it to us. Then we can start a conversation about it. If there is more than one person, they can each show their answers to us in turn, and we can see how many of their answers are the same.
The kinds of questions we could ask could be things like:
We could try to think up lots of questions like that. The game's over when there's been a conversation about each one, or after an allotted time, such as if we've decided the game will go on for half an hour or 45 minutes.
We choose one topic we think they'll enjoy talking about and might have good memories of. For example, one could be "summer fun". We could find a poem about the topic, ... well, I've never liked poetry, but I suppose there might be decent ones out there. And we could ask around in the family for other things that might bring back good memories. If we decide to talk about summer one day, for instance, we could find or ask around for buckets and spades, swimming costumes, a fan, photos of people eating strawberries, and that kind of thing.
The person or people reminiscing could also look through newspaper advertisements and compare the prices of things related to the topic nowadays with what they were like when they were younger. That might produce a laugh.
We could try to think of as many themes as we can. Christmas might be a nice one. Maybe schooldays. Perhaps picnics. Perhaps what it was possible to get in the shops in the old days. Once we start, we might be able to think of quite a few.
It can be a nice activity to do after the evening meal, because it can calm people down before bedtime and send them off with a smile.
The book says games about and discussions of good memories can be good to do in the evenings especially, since going to bed with good memories can lead to more peaceful sleep, and it's nice to go to bed smiling. And it can be a good distraction from life's frustrations, which might help people go to bed in a more cheerful mood.
We can set aside certain times during several days where the person with Alzheimer's writes reminiscences of things that happened when they were younger, like special family days out, birthdays, memories of when children were young, and whatever else they can remember. Other family members can contribute to it if they like. The memories should be in chronological order, starting with their early childhood and going from there through their teenage years, early adulthood, middle age, up until as near the present as they can remember.
The memories can then be typed and photocopied or printed out and compiled into a booklet which could make a nice gift for the whole family. We could put photos in it to make it especially nice.
We could play games like dominoes with them, as well as helping them do jigsaw puzzles, or things like crossword puzzles.
We could read to them from something educational and interesting that has lots of good pictures in it. The book suggests the National Geographic magazine. It says we could sit them near us and show them the pictures as we read, and it might give us ideas for conversations about foreign countries. We won't have to read them something lengthy they'd find it difficult to concentrate on. If we can read them short things, showing them nice pictures of the things we're reading about as we go, then it might be an enjoyable time for both of us.
Again, if they're not enthusiastic to begin with, being assertive might work, for instance if rather than saying, "Would you like to do this?" which might mean they say no out of habit because they can't be bothered, we say, "Let's do this" and start making preparations, and tell them what we want them to do next and so on.
The book suggests we could have an educational hour every week, where we rent out a film/documentary about an interesting topic like history, something scientific, a biography of someone famous, different cultures, and that kind of thing. The book says a lot of libraries have big collections of films like that. They could lead to good discussions as well.
Music from the past could bring back memories for the person with Alzheimer's that we could have conversations about as well, so we could plan to play them some of that sometimes and chat about any memories it brings back for them. Old radio shows might bring back some good memories for them, especially comedy programmes or old sing-alongs.
If they find that kind of thing relaxing, it can be a good thing to do with them before bedtime, since if they go to bed relaxed and happy, they might get a better sleep.
Another thing we could try while they're in the early stages of Alzheimer's is mental challenges, like both of us playing along with TV game shows, doing crossword puzzles, perhaps trying games like Trivial Pursuit or something like that, and organising spelling competitions if we can arrange for more than one person to play.
We could try to interest them in current events, that could be more things we could discuss with them, and turn it into fun, by doing things like putting magazine pictures of some people in the news up on noticeboards, under a heading we write that says something like, "Guess my name" or "Who am I?"
We could stick newspaper articles on the board about things going on locally or in other places in the country, and discuss them with them. ... That's if we can find anything that isn't depressing.
During a meal, we could sometimes play games with the person where we ask them questions, such as asking them to name as many ways of cooking an egg as they can think of, as many different kinds of meat as they can think of, as many different types of vegetables, as many different kinds of nuts, or fruit, as many different kinds of drinks, as many different kinds of things for cooking as they can see around the room, as many different kinds of food as they can see, as many different types of cutlery as they can think of, and so on. We could ask them to point to the ones they can see as they name them.
We might have to help with some of the answers. But we could try to turn it into a bit of fun.
The book says there may well be activities they can do without our supervision, like writing letters, thank you notes, or articles, perhaps about old memories for a family history booklet we could put together. That's if they've still got the ability to do things like that.
And if they've still got the ability, perhaps they could do some kind of art or craft, maybe making something we could sell at a fete or give away to a family member.
We could also try to tempt them with a variety of different things that could enrich their life. It suggests that those looking after people with Alzheimer's disease who they don't know much about could get some kind of little cart that they could wheel around, with different kinds of things in, that each person could choose from.
They might enjoy listening to old music, short stories on tape or CD, or old radio shows they once liked. Libraries might stock some. Books with pictures of things they used to like or places they enjoyed going to or where they once lived or their ancestors lived might give them pleasure as well.
They might like jigsaw puzzles, perhaps smaller ones as they lose more ability.
We could perhaps still play card games or board games with them. If they know any card games for one person like Patience and still have the ability to play, they might enjoy that. Large print playing cards might help if they're losing their sight a bit. It doesn't say where we'd get them.
They might be able to draw pictures.
They might like to look at books or newspapers. We could maybe try getting them large print books if we can. We could ask them what kinds of books they'd like best. But short stories would probably be better.
They might like to do crossword puzzles and other word games.
We could still play games with them, like the one where they have to pick an object out of a pillow case without looking at what it is and identify it by the way it feels.
Or maybe we could play ones where we put various fragrances on cotton wool balls, one on each, and they have to guess what they are.
We could do something similar, giving them contrasting things to taste and they have to guess what they are and tell us what they think of them.
Little snacks like fruit or popcorn might be nice for them to have near them. And we could have conversations with them, perhaps about the foods they used to like, or the countries any fruit they eat comes from, and so on.
We could discuss other things with them as well, such as current events. Perhaps we could bring them newspaper clippings of anything that seems interesting and read them to them. I'd prefer not to read anything too depressing though.
The book says pets have been found to do quite a lot of good for old people sometimes. It says if we haven't got any, we might sometimes be able to persuade people with little pets or other animals to visit and bring them along, so the person with Alzheimer's can pet them. Friends or family might be willing to bring any little pets in, or maybe even a local animal shelter - the book says some have programs where they do that kind of thing. We'd want them to be clean and house-trained though! And they'd have to be friendly and not likely to get aggressive.
And it'll probably be best if they're on some kind of restraint so they don't go running all around the house.
The book says it's best to keep disinfectant handy in case they mess the place, and that it'll be important to get a record of what vaccinations they've had if they scratch anyone so we can rule out the possibility of them carrying something nasty. And it says keep them out of the way of anyone with an allergy or who might be scared of them.
So this might be better:
It says putting a fish tank with large, brightly-coloured fish in it near the person can be enjoyable and soothing for them.
And it says hanging a wild bird feeder near the window so they can see birds outside coming to feed might well be enjoyable for them.
It suggests we could have a chart on the wall with the pictures and names of the birds that come to feed there on it, so they can tell what they are if they're alert enough.
Having animals nearby could spark off conversations where they reminisce about pets they used to have or other animal stories, or times they enjoyed watching animals, or that kind of thing.
Despite all the things we can do to make life easier for both us and the person with Alzheimer's disease, it's bound to be difficult to care for them, and emotionally draining, especially if we feel isolated. So it'll be good if we can get some emotional support, more advice on things we can do, and help with the physical needs of the person we're caring for. There might be places we can get some or all of those things.
The author of the book Learning to Speak Alzheimer's says it can be a relief to be in a support group with other people caring for relatives with Alzheimer's disease, who we know will understand what we're going through, and might have some new ideas for coping with certain problems that we hadn't thought of, or lots of practical information about how to handle certain problems or get more help from social services and so on. We might make some good new friends that way as well and have some laughs.
In fact, the book The Selfish Pig's Guide to Caring says other carers can be the most valuable source of useful information there is.
Perhaps we could find out about local support groups on the Internet, or our doctor or library might have information on some.
Also, we could maybe find and join Internet forums and chat rooms for carers where we can talk to other people in similar situations to us.
The author of the book Learning to Speak Alzheimer's says sometimes, arrangements can be made in support groups that help carers in practical ways. For instance, it can be arranged that one carer looks after several of our relatives with dementia for a couple of hours or so while the rest of us have a break; and we can take it in turns to be the one who supervises them all.
She says it might be good to try out several different support groups to find one we really like; there are several different types: Some have a leader and only go on for several weeks at a time, and their purpose is to teach us how to cope better; some are less structured and we can go to them for however long we like. Some are for specific categories of people, like those whose loved ones developed Alzheimer's earlier in life than most, and so on.
She says there are support groups for people with Alzheimer's themselves as well, for when they're in the early stages. She says ones that mix carers with Alzheimer's sufferers aren't that successful, because people won't feel as if they can talk so freely. But having separate ones in the same building at the same time can be good.
The book The Selfish Pig's Guide to Caring advises that if there's any part of caring we're not coping with or we need a break from, we explain that plainly to social workers. We can ask them to come and assess us for any help we might need.
But we'll only have a chance of getting some help if we make it clear what kind of toll caring's taking on us and what we need help with. So we could think through all the tasks of the day to make a list in our minds of what we could really do with help with. The book says we might be disappointed at how little help's on offer, but it is possible we'll be able to get more than we expected. Whether we can get any free or whether we'll have to pay, and if so how much, is something we might get information about from local support groups, our doctor, the social worker and maybe others. The rules might be so complicated that we can't rely on just one person to know them all.
It says since it's important for our health that caring doesn't put so much of a strain on us it makes us ill, - and after all, if we get ill, who'll look after the person we're caring for? - it's important we get help so we can relax sometimes. It says if we're going to get any help from relatives, it's best to think of things certain people can do and then ask them to do those specific things, rather than just telling them we need help, which might make them sympathetic, but might not lead anywhere. So, for instance, asking a sister if she could take the person who needs care for a walk for an hour one day a week at mid afternoon and then arranging with her what day would be best for her would be better than just saying we feel in desperate need of relaxation sometimes, because if we don't say what we need, they might not be able to think of any ideas.
It says it might be difficult to persuade friends to help, but we might sometimes be surprised by offers of help from people we didn't even expect, so it's worth telling people what our needs are.
It says it's essential we get time away from the person we're caring for before we reach breaking point, so searching around for ways of getting it should be a priority. It discusses the pros and cons of respite care, where the person we're caring for gets put in a home for a week or two while we relax. It says an easier option might be if we can get social services to arrange for them to go to a day centre a couple of days a week. We might be able to get advice on doing that or something similar from a charity like the Alzheimer's Society. Perhaps we could look them up on the Internet. They might even be able to advise about longer breaks.
Day centres can be good because people can make friends there, and they do activities.
The book says maybe if we can't arrange for them to go to a day centre, we could find out if a local community centre does lunches for disabled people or coffee mornings for old people or something.
It says we can perhaps feel more deserving of a break if we think of ourselves as doing an important job, far more important than many out there. If all carers refused to care any more, it would cause an emergency, with not enough care homes and care staff available to take over. People like us are very much needed. But just as with every worker, we need a regular break to recharge. For one thing, having time off can make us feel refreshed so we can do our caring job better.
The book says it's common for caring for a relative not to be seen as work, when actually, the hours are longer than they are for most people in paid work, and there's a lot involved. So we can be proud of the fact we do this job, rather than thinking of it as just staying at home to care.
The book says it might be difficult to get enough money for the things we need, or equipment to help, so we might get really fed up of trying. But it says the best way to look at the system is to think of it as chaotic, rather than against us as it might seem, which means that if one department says we can't have something, it doesn't really mean there's a hard-and-fast rule that says we can't have it, so if we apply to a different department, or rethink our application and try again, we might get something next time, or the time after. So it says it's worth carrying on trying even if it's a hassle to deal with all the paperwork and discouraging when we don't get what we want.
It says if we can't understand something on a form, we shouldn't guess what it means, since if we get it wrong, we could miss out on something we need. It's best instead to get help with filling it in, by a friend who's more expert if possible, or perhaps from someone at a place like the Citizens' Advice Bureau, since they'll be used to filling in forms and will understand their jargon.
It says the forms will often contain questions that are embarrassing for the person with Alzheimer's so it'll be awkward to fill them in, because the questions might annoy them. Questions like, "Can they get dressed or go to the toilet or eat without help?" The person we're caring for might be embarrassed by the questions so they'll want us to say they can do all those things even if they can't. But if we do, we'll miss out on money or help we really need.
Naturally, if we say they can't do things they can, we might well be found out and we'll miss out on help as well.
It might be tempting to fill in the form behind the person's back so as to save their embarrassment, and forge their signature; but again, if we're found out, it'll be more difficult to get what we need. The book advises we spell out in detail exactly what the person can't do, so as to have the best chances of help, but that we invite a friend in while we're filling the form in who might be able to calm things a bit, someone who's not close enough to the person we're caring for to automatically back them up no matter what.
But the book says some questions will still be difficult, such as, "How far can they walk on their own?" A lot of people with disabilities and illnesses can walk different lengths a day depending on how well they feel that day. Some days they might be able to stagger all the way to the shops, whereas other days they don't feel well enough to cross the room. And chances are their condition will get worse so things will all change soon. So that kind of question can be awkward to answer. If we compromise and invent a distance halfway between the two, we'll need to remember what we said in a few months' time when we might still be fighting for help, so it's worth photocopying each form and keeping a copy for ourselves.
The book recommends we ask around to see if anyone knows what kind of answer is being looked for, before we fill the form in. For instance, would we qualify for a benefit if we put 49 metres on the form that we wouldn't qualify for if we put 51?
The book also says officials actually expect us to put the worst case down, so if the person can walk around the block one day but can barely walk around the house on more days than they can get out, it's best to put the amount they can walk on the more usual bad days down. That'll be expected.
The book says at some point after we've filled the form in, an official will want to meet us face-to-face to ask questions. That can be even more awkward than filling forms in, because we can't take as much time to consider our answers, and the person we're caring for will often be right there contradicting us to save their embarrassment, or telling a completely different story. For instance, when asked how far they can walk, they might jump up and stride around saying they don't have a problem, when we know that after two minutes they're usually too tired to continue walking.
The book says sometimes we can choose to be assessed separately from the person we're caring for so social services can find out what our own needs are as the carer, but not always. It says they'll usually say whether they want us both assessed at once or separately. They'll want to speak to us and the person we're caring for face-to-face so they can see for themselves how much help they need. It can be awkward if we're there listening to them lying to save their self-respect, or because they take us for granted so much they don't realise just what we do for them, or because they've forgotten just what they need. At least if we're assessed together, we can put our own side of the story.
But it says a problem if we're in the room together is that we might not want to hurt the feelings of the person we're caring for, so if we feel desperate for help or utterly exhausted and fed up, we might hide it and say we're doing allright, and so we won't get the help we need. So we'll have to think about that one.
The book advises that we prepare ourselves beforehand to tell it like it is no matter what, to give ourselves the best chance of getting the help we need, even if we feel awkward doing it and the person we're caring for is likely to be angry with us afterwards.
The book says we don't have to feel as if we're asking for a favour if we ask social services or another official department for help, since we'll only be getting what we're entitled to.
It says we don't need to feel inferior to them because they know a lot more than we do about the way the system works, or because they have power over our lives; after all, we're the ones making sure the state doesn't have to shoulder the cost and the burden of caring for the person we're caring for. We're doing them a favour really. If we're not getting the information or the services or the money we need to carry on caring effectively, the problem is that the state isn't doing its job properly. The book says the more confident and pushy we are in asking for help, the more we're likely to get, because sometimes, whether we get some doesn't depend on what we need, so much as how much fuss we make.
And it says it's best to make the fuss to one person in particular in every department we're dealing with, someone we find out the name of and can get to know, so we develop some kind of familiarity with them and they'll get familiar with our needs so we don't have to keep explaining them all from the beginning. So every time we ring up that department, it's best to ask if we can speak to that particular person.
It says it might take us some time to get help, but it's best to try not to be discouraged, because the more fuss we make, the more chance we have of getting something in the end, even if we were told no the first time.
The author says he's personally found it to be a rule that the more confident and certain people are when they give advice, whether it's about financial benefits or anything else, the less reliable the advice tends to be. Advice given hesitantly by someone who says they're not sure of something - they need to look it up, but they think that's the way things are, is more likely to be reliable, he's found. So if an official tells us emphatically that it isn't worth applying for a benefit, it might sometimes be worth applying for it.
But he says it's best to be meticulous in the way we go about filling in forms and keeping records of information and things, so we don't get refused help because we forgot the rules or something. So though it sounds like a boring thing to do, he says we should keep notes in a diary of what was said in our conversations with them, keep finding the latest information about what help and benefits we're entitled to, keep copies of any forms we filled in, and keep folders of our correspondence with them. He recommends we think of it as being part of our job.
He says if we do get refused at first, it can be less soul-destroying if we don't take it personally but put it down to the result of a chaotic system. Chaos might mean we sometimes don't get what we want, but it can sometimes mean that if we try something similar, we will get it.
The author of the book Learning to Speak Alzheimer's says quite a bit about what kind of help it might be possible to get from social services and other places. That'll come in useful. She recommends that when we're discussing the help we'd like with social services, we talk about how we feel about the toll caring's taking on us, not just about what the person with Alzheimer's needs.
She says advising anyone who comes in from outside to help care for the person we're caring for about several of the things in her book could make life easier for all of us, if they're not trained in them already, and they might be able to teach us some valuable care techniques as well.
She also has a section in the book advising people caring for relatives they don't live with.
She recommends that if we do get a helper, we look out for signs we can use to tell how well they're doing their job, such as if the person with dementia is clean, seems to be in distress or enjoying themselves, and so on. They might make false accusations against the helper out of paranoia. We'll have to try to distinguish between any behaviour change or distress that's caused by the disease, and any that might mean the helper isn't a good one. But there might be signs that can give us a more accurate idea of how well they're being cared for, such as if they get more aggressive and upset when they've been with the helper than they are with us, although that won't necessarily mean something's wrong, because the helper might do the parts of the caring that bother them more anyway. A number of things together might give us good clues though.
The author of the book Learning to Speak Alzheimer's says a lot of people try to keep their relatives with Alzheimer's disease in their own home for longer than is best for them because they made a promise never to put them in a home before they were ill. She says it might have been easy to say they wouldn't then, but people shouldn't feel obliged to stick to that promise now the person has dementia and they might be a danger to themselves, and caring for them is more difficult than anticipated. She says if the best most loving thing to do would be to put them in a home, then no one should feel guilty if they don't carry out to the end a promise made to them before they were ill; and even if the person with dementia is angry for a while, if it's genuinely the best thing to do, then it's for the best, and if it's a good home, the person who's been sent to live there might get to be thankful after a while.
She suggests we make plans for where to move them to quite a while before we might actually want to send them there, so we can visit several homes and find out which ones seem good. Also getting the person's name on a waiting list might help if there's a queue. In fact, she recommends we start looking as soon as the person gets the diagnosis of Alzheimer's.
She recommends we drop in unexpectedly to look around nursing homes and the like so we can see them as they are, so we're more likely to be able to tell whether staff and patients are getting on well and whether there's a friendly atmosphere and so on.
She advises that if we put the person with dementia in a home, we make their arrival more welcoming for them by taking some of their things there first and putting them in their room so they're there when they first get there. She says one thing that can make things seem familiar is if we bring something that smells of something they like beforehand and put it in their room so they recognise the fragrance when they go in and it will maybe give them a homely feeling.
She recommends we ask a staff member to meet us when we first go there, perhaps coming out to the car, because the person with dementia might refuse to get out if it's just us telling them to, because they're annoyed we've brought them there, but they won't be annoyed with staff for doing that, so they might be more co-operative.
The author says the person might come to feel very relieved by being put into the hands of professional staff who know how to care for them, but they might not want to admit it.
She says when we first go in with them, it can be good to stay with them for about half an hour and then say goodbye, deciding beforehand what we'll say to excuse ourselves. Even if they're angry with us for leaving them there, she says it might very well not last long. When they get used to it, if it's a good place, they might like it a lot.
It may be that not visiting them very often in the first week will help them settle down more, though speaking on the phone to them can be reassuring for them. We can use the time on our own to catch up on relaxation and do some of the things we had to put off.
The author says when we do visit, it's best to check first that we won't be going while they're involved in an activity. And she says don't visit for so long at any one time that it interferes with their new routine.
She says we could tell the staff about our relative's favourite memories and topics of conversation and other things they like, so they can communicate with them in a way they'll enjoy more. Also, telling the staff about their likes, dislikes and food preferences can help them make life more pleasant for them.
She recommends we try and take the person with dementia for walks outside when we visit them, since it'll still be important for them to exercise, and also they might enjoy the change, especially if there are nice things growing in the garden.
And she says it's best if we can persuade other people familiar to them to visit them, although one at a time, so they don't feel over-stimulated.
She says we could bring things they'll like when we visit, perhaps some of their personal items, or a tape with family members talking to them, that we can label and make sure the staff will keep track of. We could also take some of their favourite foods and label those.
She says it might be nice if we take photo albums with us and talk about the photos with them, if they like that kind of thing. She suggests we could write explanations of what each picture is under it, so staff could go through the photos with them as well and have a conversation with them about them.
She says if we want to take the person out for an afternoon or weekend, it's best to check with the staff as to whether that would be a good idea, because if it disrupts the patient's routines, they might end up feeling deprived, even if they've enjoyed themselves with us, for instance if we get them back after supper's finished and they want some. She says they might get agitated anyway, so it can be best to get them back to the home just before an activity starts, so they get involved in that and forget anything that might otherwise bother them.
We can monitor the person with dementia over time to see if they like the home and seem to be being well cared for. We won't need to feel guilty about them being there, since they might actually get better opportunities for activities and a social life than they got with us.
I'll see how things go.
This article is written slightly differently from most articles. All the information in most of the articles in this series is written as if by someone finding out a lot of helpful information for the first time, just learning about it. That person themselves isn't real; they're just a representative of a lot of others suffering the same thing. Any little anecdotes they tell about their personal lives or those of people they know almost always have really happened though, usually either to the author or to someone else known to the author. The article comes with a very short story about them to set the scene, and then presents all the self-help information as if it's what they're finding out and what they think of it.
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Phyllis's husband has Alzheimer's disease, and she's finding it increasingly difficult to cope. He becomes aggressive or fearful at unpredictable times, needs physical care she finds strenuous, and is confused a lot of the time and she doesn't know how to help him. She'd like to do more to make his life happier, but doesn't really know what, and is becoming worried about not being able to cope.
She finds a couple of self-help books she hopes will give her some ideas.
While she reads them, she's encouraged. She gets several new ideas.
She has a new friend, Barbara, who's thinking of taking on the job of manager of a care home for people with dementia. She thinks of passing on several of the strategies to her in the hope that she'll train her staff to use them, because she thinks it might improve the quality of the lives of the people in the home.