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Carers of people with dementia

Living with change

In the early stages of dementia, the carer may hardly be aware of the changes that are taking place. In some cases they may adapt to the changes without really taking account of them. When they look back they may recognise that there has been a change in their relative roles, between husband and wife, or between parent and child.

Several male carers described noticing how their wives had begun to opt out of domestic activities. Even after a diagnosis had been given, the transfer of responsibilities was not always straightforward and had to be negotiated with tact. This carer also described how he had to find a way to persuade his wife to let him look after to her physical needs.

 

Describes how his wife has gradually withdrawn from all domestic responsibilities.

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Sex: Male
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Gradually she has withdrawn from almost all domestic responsibilities. She was a very, very efficient household manager but that has virtually gone although occasionally she shows a willingness and indeed an ability to do certain things like ironing although she usually leaves the iron on afterwards, or simply walks away from it in the middle and gets on with something else.

She can't cook but she can help with cooking so what I normally do is suggest that she cut up the vegetables or sets the table or something like that. She doesn't do any cleaning although again from time to time she will polish a table or put a duster round but in a rather disorganised way. Initially when I seemed to be taking over responsibilities in the house she was resistant and said 'You're taking everything away from me.' But now she's quite happy about that, she's perfectly happy for me to take the lead in the house and also in matters like shopping and so on.

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. Shopping also it's now entirely my responsibility. So in a sense the sort of day-to-day domestic role, I've gradually taken over that and that doesn't cause too many problems now.

A daughter described her feelings when she realised that she was having to make decisions for her mother in a way that her mother would have done for her, as a child.

 
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Had to accept a reversal of roles with her mother who could no longer make decisions.

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Age at interview: 59
Sex: Female
Age at diagnosis: 82
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In the case of dealing with a parent, there's a role reversal and the, even though you may have been moved out of the family home for years and years, and you've been living your own life and making your own decisions, in the relationship between the parent and the child however, whatever their ages, there is always some residual authority invested in the parent. Well that changes, the parent becomes dependent on the child by, of necessity, and the child finds they're making the decisions for the parent' where to live, how to live, whether they have carers in, whether to move house, which GP, what to eat, everything, what to wear on a particular day.

And as I say those decisions can be huge decisions like whether to sell a property in order to fund care or just whether the person needs to wear a bra anymore. We recently decided that my mother didn't need to be cluttered up with such an object and asked the staff not to bother putting it on her. She's not aware that she's not wearing one so there's no point in it really.  We have sold her house, we did decide that she would need to go into a nursing home, but you can make as many decisions as you like but you have to have the co-operation of the patient and that's where it really gets difficult.

I think myself that its not, its never going to be a simple issue making decisions for other people. Its not really, although it's a reversal of roles, its not really like a parent deciding this school is better for their child than that school or that they will go to a scout evening but they won't go to a disco. It isn't, because you're dealing with an adult and you have to try and decide things what will be acceptable to that adult. At the same time you're restricted in what you can actually have, you're restricted by what's available, you're restricted by financial considerations perhaps.

A wife whose husband had liked being the one in control of things, throughout their long marriage, now found she had to take charge of things. She described how she had to introduce these changes carefully as her husband would have found them humiliating prior to his illness. Another woman was a in second marriage that had meant new perspectives and hopes but the onset of dementia had created a situation which changed their relative roles in a way which she knew her husband would have hated.

 
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Her husband used to see her as 'the little woman', now she had to take charge of things.

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Age at interview: 87
Sex: Female
Age at diagnosis: 80
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It was getting very, very difficult for me because he was his own man, he wouldn't take… I was 'the little woman', you know, he wouldn't take anything from me, telling him what to do, which was difficult.

And difficult things like money, because obviously he used to take some money from the bank and then he would give me some money for my house-keeping, although I had a cheque book, but he would give me some money for my house-keeping.  But after a while I was worried about what was happening to this money because I would find £10 notes all over the place and so eventually he did get to the point when he realised perhaps I should go to the bank. I think he felt embarrassed going up to the counter and so I used to take the money and give him just a little bit of it. But at that time he didn't understand much about money. He got worse and eventually instead of giving him a couple of £10 notes, I would give him a couple of £5 notes, it wasn't quite so much to lose.  

There were all sorts of little things like that, it was very hard when you've lived with somebody who is so intelligent and then realising that they don't even know what a £10 note is, it is very hard. But he did begin to get very, very irritable and he just didn't understand.  

 

They can no longer be equal partners in their marriage.

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Age at interview: 62
Sex: Female
Age at diagnosis: 61
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The big ethical decision is I have had to take over [my partner]'s life and that's not what he wanted. As I've told you before when we got together it was as an equal partnership, both, all of our, both of us had grown up children and families away and we got together as equal partners and he did not want anything else. And now that's, that's a problem, it isn't a problem it is a situation that's arisen because of his dementia that he would absolutely hate and detest. But it's inevitable.

You know you could go on about the driving, the money, those are the two, two of the biggest and the loss of, the complete loss of independence. Not being able to go anywhere on his own.

In the early stages of dementia, before the diagnosis has been made, the carer may be bewildered by the changes they observe. It can be very distressing when a much loved person seems have lost the good qualities which had formerly been seen as an essential part of their character. One woman who had met her husband in later suspected that the changes in her husband were revealing aspects of his character that she had ignored when they married. She found a new way of relating to him after he started to spend time away in residential care.

 

Getting a diagnosis provided an explanation for apparent changes in his wife's personality.

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Age at interview: 57
Sex: Male
Age at diagnosis: 56
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Initially, before the diagnosis, I found it difficult to understand what was happening with my wife. She was never ever a selfish lady, she began to get a little bit selfish, like when we had the food she would want hers first, even before the grandchildren, which was totally not her. I've already said that her diet changed tremendously.

Conversation with neighbours, with friends and relatives changed because now I realise that she was losing her vocabulary, losing the understanding of words and therefore finding it difficult to have a conversation. After the diagnosis that became easier to understand and accept, and at least I could then explain to the people what was happening with my wife and the, the behaviour, the behavioural changes that were taking place.

Early things I noticed before the diagnosis were things like when I'd cut the grass it was never short enough, or it wasn't the fact that she was pleased to see something done, it was always what I hadn't done, which was not her at all. There were lots of behavioural changes that took place initially.

One of the things again apart from her not becoming aggressive, one of the positive things was that she always took pride in her appearance; she was always immaculately dressed. She wanted to go out when she wanted to go out, I could be working in the garden and asked her if she wanted to go out on that day and within ten minutes she'd come down immaculately dressed and wanted to go out. And although I'd asked her ten minutes before if she wanted to go out, she'd changed her mind within that time, or she didn't understand what I was saying when I was asking her if she wanted to go out.

 

It is becoming increasingly difficult to communicate with his wife who does not recognise her...

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Age at interview: 57
Sex: Male
Age at diagnosis: 56
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She's now, she was incontinent at home but she's now totally incontinent. That's another stage that, that is reached. Now she doesn't understand the conversation that I have with her, there's only one way that, no there's more than one way that I can communicate with her because we still have a cuddle; we still have a kiss. But numerically her brain is still OK. She, if my car's parked outside she'll count the numbers on the number plate. If she's in her room we'll go round and count the number of photographs that there are and she has no difficulty in, in doing anything, I'm not sure about doing anything in numeracy because I haven't tried to multiply or divide or anything but certainly counting she does not have a problem. So we communicate there.

Other forms of communication, verbal communication, have virtually gone. She can't, she can say words but they're not put together to make any sense. So it's virtually impossible to verbally communicate. So I, that must be another stage or another happening. And that I am sure is probably only going to, to get worse, because even the few words that she can remember and string together incorrectly will, will probably go.

I have tried reminiscing with her and that doesn't appear to work. I've talked about our children, she can't remember the children, she doesn't recognise them when they go in; she doesn't know their names. I've tried to reminisce using old photographs and that doesn't register. I've tried to reminisce talking about our past and that doesn't register. So communication becomes very, very difficult. Which, which is another stage.

Being able to recognise the carer and other family members was often seen as proof that all was not lost. But once that was gone and the person was no longer living at home one carer, at least, admitted to doubts about his status as a husband. He wondered whether it was appropriate for him to consider himself tied to a wife who didn't even recognise his existence and whether he should move on. His daughter thought that it was inappropriate for him to start a relationship with another woman and this caused tension between them.

 

Has difficulty deciding appropriate behaviour now that his wife no longer recognises him but...

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Age at interview: 57
Sex: Male
Age at diagnosis: 56
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The only other thing that's affected, which is currently going on which has happened recently is that I have, taken a lady friend out for dinner, taken her out on several occasions and my daughter cannot accept that, will not accept that. And that has vastly affected the fantastic relationship between my daughter and I.

I've tried talking to her. She just will not listen. She is not trying to understand in any way, shape or form. Although I can understand, her feelings in that, her mother is still here and I'm taking another lady out, what she will not I think accept or at least try to understand is that I'm still relatively young. She knows I love her mother and my wife dearly, but she is not accepting that taking another lady out on social occasions or for a meal is, she will not accept that's something that I could do or indeed I should do.

And over the last couple of months our relationship has deteriorated through her doing because I've tried desperately hard to talk to her and she won't listen to me. That has affected the relationship with my daughter. As far as I'm concerned it's part of trying to live a normal life.

And I think my daughter is considering that her mum, my wife has, I was going to say only been in the nursing home two and a quarter years, she's been in the nursing home two and a quarter years, and my daughter doesn't understand that it's been, I think the diagnosis was five, six years ago now, that we didn't have a normal - I'm not sure if that's the right word - yeah our marriage changed from what it was some ten years ago. So it isn't just the two and a quarter years my wife has been in the nursing home which I think is what my daughter is seeing. For me it's now some nine, ten years that the marriage with my wife changed.

And I now see it as I think we only have one life, I don't know, I've no evidence otherwise. I'm still not official retiring age. My wife could live another twenty years. I doubt very much if, my wife will probably outlive me and I toyed with the idea for some time that marriage is till death so us part. And I think that my wife as she was is no longer.  

Severe dementia can change someone from the familiar and loved partner of a lifetime to someone who is barely recognisable as the same person. People reported getting perplexing glimpses of the person they used to know in fragments of speech or characteristic gestures. One carer was able to draw comfort from her belief that her mother's soul remained intact in spite of her almost unrecognisable outward demeanour. Others were unable to look at things in this way, although it might have made the situation more bearable.

 
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Gets glimpses of the person her mother used to be.

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Age at interview: 53
Sex: Female
Age at diagnosis: 61
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No, I think because my mother retained enough bits about herself throughout the illness that even after she'd had the stroke she had some little mannerisms with her good hand, or she'd have a facial expression, just a touch of it that was her. That I could recognise as being part of her before she became ill and she managed that, you know there was always a little bit left of what was her.

What I didn't recognise was the very angry part that we had during the early stages. And that was quite a shock really when she became almost violent on one occasion to my sister. And, and the rage, the rages that she would get in were a shock, and so she was different.

But when she was calm there was enough of, and right up, as I say right up until the very end there was always a little touch of her that remained. It would be the way she touched her hair or she would sometimes raise her eyebrows in an expression, I don't know if she did it because she understood or if it was just something that was her that you could think, 'Oh yes she used to do that and that's a recognition'. Or she'd look at you as it she was understanding everything and you'd think there's that touch of her that's still there.

 

Believes that her mother's 'spirit' remains intact.

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Sex: Female
Age at diagnosis: 80
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I think you've got to be very, very careful saying that as well. And even me saying 'a ghost of her former self because the spirit if you like, being a Christian it's the spirit, but the core if you like right down inside you, the main crux of your being, your spirit right down inside you is still there. So she can still feel as deeply as she ever felt but she might not be able to show that feeling, it might not be obvious, she can't express it in words, she can't say how, even going to the loo she forgets the words and she'll go 'Oh, oh.' I know immediately what she's saying is 'My tummy hurts I need to go to the loo.' 

So those thoughts and feelings are still there and an awful lot more might be still there that we don't know about, perhaps in years to come we'll discover what a wealth there is still there but it's unable to come out because they lose the ability to express it. So I think yes you have to be very. Careful because that vital person, vital person is still there and still needs, still has the, still needs love.

So I think sometimes when we might say that we're actually looking at it from our point of view aren't we. I could say 'Oh my mother's only the ghost of what she was because she's, she can't do this, she can't do that,' you know, poor me. And that's looking at it from outside and I think it's much more valuable to look at it from inside, to look at it from inside that person.  She's still a vital human being with still the same needs, the same entitlements as she was, that hasn't altered at all and we should, we should give her the same care, more.

I can remember reading a book ages ago about somebody, some woman, it was in praise of Cheshire Homes and she had some illness which made her curl up and she couldn't talk, so she couldn't signal and she'd written this book because she'd actually been cured, because she'd curled up, she couldn't do anything, she could hear people but she couldn't react.  And then she was put in a Cheshire Home and the matron of the Cheshire Home had a two-year-old son who ran past and the matron saw her eyes flicker, the patient's eyes flicker. And she said 'Gosh she can still hear, she can still react we mustn't give up.' So people would talk, talk, talk, talk to her and eventually she, she was cured. And she said there was this panic inside that people would give up on her because they thought she wasn't worth it, she didn't understand.

Now we don't know that same panic might be inside the Alzheimer's sufferers, we don't know because they can't tell us, but I believe it's still there, they still need us so I don't think. The vital thing that makes us what we are is still there right to the end with an Alzheimer's sufferer and the other things are dropping off by the way side and somehow we've got to compensate for them. So the vital human being is there needing love even more.

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Last reviewed July 2018.

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