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Carers of people with dementia

Self-care

While it is not uncommon for many people to hang on to food beyond its best before date, often to the amusement of other people, an extreme form of this might be an early symptom of dementia. This can cause serious concern particularly where people in the early stages of dementia still live independently. Carers described confusion between ovens and refrigerators and people seeming to ignore the commonly accepted associations between foods. Help in the form of clearing out the fridge or cooking was often rejected or seen as interfering. One man who would refuse to eat what his wife offered him would scavenge outside, eating acorns and fungi.

 

Tried to make sure their mother had a reasonable diet while she continued to live independently.

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Age at interview: 60
Sex: Female
Age at diagnosis: 80
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We had a care worker in for her, but my sister suggested we had her in for the evening, because we knew at least that mother was home in the evening. But mother wouldn't let her into the kitchen, though she was prepared to come and cook for her. So mother didn't really get fed which meant that we had, my sister and I, to go down once every three weeks at a weekend and take mother out for a meal. So at least she got fed one every three weeks and we would take food down with us. 

But there again, it was really difficult to know what food to take, because my mother wasn't coping with, she'd got a fridge/freezer, but she kept turning it off which meant the stuff was thawing out and then she didn't understand the frozen food. Her care worker put in ready meals for her and she would take them out of the freezer and say to me 'So do you want some beef in mushroom sauce with your cup of tea?' And then she'd put them back in the freezer again. So we were going screaming.  

What else was it? One time the care worker brought her a container of soft cheese, in a sort of margarine tub, a flat one, so mother thought it was margarine and tried to fry in it. So she was trying to cook me eggs and bacon, cooking it in soft cheese. She didn't understand best by dates. Because we think that people are competent coping, but they weren't. One time when my sister was taking her out, she had the most appalling diarrhoea. My sister thinks she had eaten bad food. So we couldn't do anything about that. So we tried to take down things for her to eat which would last and which couldn't go off, so it basically meant cheese and fruit.

Using Meals on Wheels to try and ensure a regular diet could was often unsuccessful as the person with dementia couldn't remember to be at home to receive them.

Another aspect of behaviour that frequently alerts people to the onset of dementia in others is their increasing neglect of their personal appearance. Carers talked about noticing that someone who always prided themselves on their appearance beginning to look scruffy and unkempt. A daughter said that she realised something was wrong when she noticed stains on the back of her mother's coat suggesting that she had not noticed that she had wet herself. She also described how her mother seemed to have stepped out of her knickers when she wet them leaving them around the house.

Carers who attempted to smarten up the person with dementia were often thwarted by a determined resistance to such interference. One daughter believed that her mother would get up very early to be sure to be dressed already by the time her carer came to help her. One man describes how his attempts to smarten his wife up were undone by her insistence that she should change back into her everyday clothes almost immediately. One husband describes how he learned to persuade his wife into letting him wash her and change her clothes.

 

Finding ways to get his wife to wash and to change her clothes.

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Sex: Male
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The other area in the home which has been difficult but which we're gradually coming to terms with is the fact that she does need help from me with washing and dressing. Now that was an enormous issue about twelve months ago when she simply refused to wash, to shower and would grab any old clothes, dirty clothes out of the wardrobe and dress, not exactly inappropriately but in a rather grubby sort of way. Now that was very distressing for me because she was someone who was absolutely immaculate in her personal hygiene and in her dressing and so on. But we've solved that problem reasonably well. She now accepts that I take the lead in suggesting when she has a shower. We've actually installed a walk-in shower in the bathroom. That has helped enormously. By and large that's not a problem between us.

The problem of choosing appropriate clothes for her is still an emotive issue. Sometimes she's quite willing for me to take the lead there but often, indeed this morning she said 'I'm perfectly capable of dressing myself without your help.'  So that's a difficult issue and is a cause of some distress between us.  

Another husband had felt unhappy about helping his wife with intimate aspects of going to the toilet. He came to accept it because he knew he could do it without upsetting her. He also felt upset that the incontinence advisor, who was supposed to help him, showed little respect for his wife's feelings. He suggested that incontinence was a problem which should be discussed at the time that the diagnosis of Alzheimer's was made and that husbands particularly needed specific advice on ways of dealing with it.

 

Was concerned about his wife's feelings when he had to deal with intimate aspects of her toilet.

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Sex: Male
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At first it was a strange thing because although we'd been married forty-eight years, and I'd looked after her mam and dad it, was, I was more embarrassed, not, no not embarrassed, I was more worried about her feelings, than anything else. And, I had, read and, also been told about this problem with, they, might think you were being sexually orientated rather than caring for them.

In fact that did crop up once or twice when I was getting her ready for bed, she'd say things 'You're not, you're not taking me to bed you know. I'm not having none of that.' When in actual fact nothing was further from my mind of course. But then I'd just let her get into bed as she was. But later on I did have to wash her private parts obviously, and I did have to help her to go toilets by removing her clothing and things like that.

And strangely enough, she wasn't worried in the slightest and neither was I, I wasn't embarrassed at all. I don't even know why I was embarrassed in the first place, except for being worried for her, not for myself, you know. And it just became a normality, in the end, I just did it when it was, she'd say 'Oh I want to go toilet.' Or, I could see that she wanted to go to toilet because what she used to do was wander up and down and I'd, say uh, 'Have you lost the toilet then?' She'd say 'Yes, where is it?' and I would take her to the toilet, so yeah, we, soon, got over that I think really. 

I found the incontinence thing a really big problem because I didn't know where to go. I didn't know what to do, at first. It really wore me down that did until I found out, 'cause I mean I was quite prepared to clean things up and that but I didn't know how and what direction it would go and what to do about it. I didn't, I mean when I tried to put an incontinence pad on, I done it the wrong way round and instead of it being a sort of reasonable experience it became a fight, the first time I did it, which was upsetting for me and was upsetting for [my wife]. Whereas had I been warned and perhaps even taught what to do then, you know.

Once, I think once they say 'Your wife's got Alzheimer's' and then go through sort of what might happen and things like that and then when it come to incontinence say 'And if they get incontinent, you can do this', and you can go to perhaps a carers' meeting and it can be explained to you how to utilize these objects. Rather than as I was 'Here's a bag, it's got incontinence pads and knickers and things in' and then you're gonna, I mean especially for a man, I mean a woman might be better at it, and say 'There they are, do it'.

Rather, say' 'There they are, this is how you do it.' I know it might sound as it it's a simple thing to do but it isn't. When you've got somebody who's incontinent and you're trying to change them, and clean them and things like that, it isn't a simple operation. It's just one that wore me down a bit until I got into it. But it wasn't a problem of me not wanting to do it or anything like that; it was that I was doing it the wrong way! So yeah, there are things like that.

I suppose on all the caring, there could be, I think really what it needs is, when you know somebody has got Alzheimer's is, there must be people who know by now all the things that are likely to happen and some of these could be taught quite early on to the person who's gonna look after the person with Alzheimer's, that's how I feel about it. I think that would be a good idea because you go into it blind and it is…

What I found was that each problem that came up, it wasn't until the problem was there that somebody would explain it.

A less usual situation was described by a woman whose husband wanted to bath several times a day.

 

Her husbands eccentric approach to washing was upsetting for all the family.

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Age at interview: 52
Sex: Female
Age at diagnosis: 46
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He would quite often be wandering around with nothing on. He got to the stage where he didn't really register, although he was never incontinent at home, he was quite happy to go and stand out of the door and urinate outside. He couldn't see why he shouldn't.

He used to shave, he was very much into hygiene and keeping clean, he used to have a bath three or four times a day. He had a fairly fixed routine. He used to get up about half past five, cycle down to the swimming pool, swim, cycle back, have a bath; have breakfast and go for a walk, come home have a bath. Maybe mow the lawn and gradually, although he continued to mow the lawn until quite late, he, he mowed everything in the garden. He would lift the mower up and put it down on top of bushes. And then he'd go and have a bath.

And it got to the stage that I kept the hot water running all the time because you couldn't persuade [my husband], if [my husband] wanted to have a bath five times a day then you couldn't persuade him that he'd just had one and he didn't need one. And if the water wasn't hot then he would run a cold one and say 'I can't get in that it's cold, what's wrong with the hot water?'

So, although all of it sounds quite funny, at the time it was soul destroying, watching [my husband] go down hill, trying to keep the family together, trying to keep the children on, learning to read, learning to write, in tune with the world, having some friends. [My husband] used to shave and he shaved the back of his neck because he had a very hairy neck and gradually the amount that he shaved crept up so that at the end he just had a little bit of hair on the top of his head and he'd shaved all the rest.  And people used to think that was very eccentric, the children got teased at school because of [my husband]'s hair.

Sooner or later, incontinence, at first urinary and later double incontinence, may become a problem. Several carers are convinced that this could be delayed through increased vigilance by the carer. The problem, they think, is not failing to appreciate the need to urinate rather it is due to forgetting where the lavatory is or in some cases how to use it. One carer describes how the problem began after her mother had moved in with her and was in an unfamiliar setting. One a husband remembers that his wife only ever wet the bed when he had been so tired that he failed to wake up and take her to the lavatory in the night. One daughter describes how she solved the problem for a time by persuading the carers in her mother's residential home to take her to the lavatory at regular intervals.

 

The only time his wife wet the bed was when he failed to wake up to take her to the lavatory.

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Sex: Male
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Now a lot of people say they get incontinent. Well [my wife] never got incontinent, not at home. There was a reason for that in my opinion because when, when I woke up I took her you know, I took her to the toilet and I'd take her to the toilet every so often. So whether it was that, I don't know but she was never, I'm telling you all this, I don't know whether you want to know it.

But occasionally there was only about two or three times during the night when I'd been dog-tired, I must have been, she's got up and went to the toilet and came back to bed and I have never known, you see. Bless her heart, you know. She never cleaned herself, well I'd just have to take the sheets off and wash them. Two or three times, that's all it was, so I never had any trouble that way.

 

Realised her mother was confused about how to go about going to the lavatory.

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Sex: Female
Age at diagnosis: 80
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She knew she wanted to go to the loo but she doesn't know how to do it now.' And the lady who I was talking to is one of the senior carers and she said 'Oh yes, I think that's so.' I said 'I wonder if a way round it…' because I said '…I've noticed she always tells me when she wants to go to the loo, when I'm with her and maybe she doesn't feel she knows you well enough to say she wants to go to the loo and she doesn't feel she knows you well enough to admit that she doesn't know where it is.' But she knows me well enough now, there was a time when she wouldn't admit that to me, but I have noticed since she's been here over the weeks, and it's probably the Alzheimer's, that she hasn't known what to do. She used to know what to do when she went to the loo, she said 'What do I sit on?' and 'What do I do with that?' and she stuck her walking stick down the loo.

So I have noticed that I sometimes have to take her things down for her and then I always close the door when she's performing because I feel it's her dignity. So I've noticed that she hasn't always known what to do and I thought they knew as well but obviously not all of them do. So I did suggest to this carer, 'Do you think it would be a good idea if somebody could ask her if she wants to go to the loo every two hours?' She said 'Oh that's a good idea.' I just thought well! So that worried me a bit but then when I went over to see her that night I saw the manager and she said 'Oh I'm sorry about that, obviously your poor mum didn't know how to do what she wanted to do.' I said 'Well that's what I felt.' So they put a notice up, and they take it in turns.

Once incontinence is established then carers have to find ways to cope with it which avoid distress to the person with dementia but also save the carer as far as possible from the enormous burden of keeping up with mountains of washing. One elderly man was almost forced to give up as a carer when his washing machine broke down. One daughter described her opposition to the use of a catheter for her mother who was doubly incontinent but did later did accept it when she realised that not only did it relieve her of a lot of washing but it also helped to protect her mother's skin from damage.

One woman had to buy single beds when her husband regularly wet the bed at night but still had a major problem with washing and cleaning up in spite of using large incontinence pads and 'Kylie' protective sheets at night.

 

Coping with her husbands incontinence is a daily burden.

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Age at interview: 61
Sex: Female
Age at diagnosis: 70
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About a year ago we were, again we were on holiday and I noticed he got out of bed quite quickly one morning and he wet on the floor, just a little bit and that, that happened increasingly, until January this year he was wetting the bed virtually every night. I had a 'kylie' sheet which I put on his side of the bed. But then, about that time he started going for respite [at] an NHS resource at [place].

And the second time he was in there I went out and got single beds! I couldn't get, because our bedroom's so small, we had it fitted around the double bed, I had to get two, two-foot six beds and we actually had to put them together, but I now put a plastic sheet between the two mattresses, just to be on the safe side.

And he's also become frequently incontinent, bowel wise as well so that, that has made a huge extra sort of workload for me. I start every day with getting him out of bed, stripping his bed, getting him in the bath, nowadays I need to be around most of the time he's in the bath or he just wallows. So I'm sort of up and downstairs for the first half hour or so of each day.

Yesterday when we were out, he'd dirtied himself and I, he had a funny turn when we were out um, he virtually collapsed on me and I had an awful job to get him back. And I just let him sit, so of course by the time he was actually mobile again um, he had to be showered and we, we have this quite a lot now. Every, every trip out is, within minutes of walking he says 'Oh I need the loo' I say 'Let's go back then'. 'No'. So I know by then its probably too late.

I mean we use pads all the time. Night-time we have the biggest ones they can provide but he still manages to soak them and the bed. And I was washing quilts two or three times a week as well as the other bedclothes. And I say that, that is probably the biggest thing at the moment.

Last reviewed February 2020.

Last updated March 2015.

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