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Carers of people with dementia

Becoming a carer

Most of us expect to spend part of our lives caring wholeheartedly for our children from their birth until they are able to leave home. We do not question our responsibility in this role, which we have chosen to assume. When their children are grown up couples may expect to embark on a new phase of their lives in which they concentrate more on their own needs and pleasures. For many however this may be the very moment when they find themselves increasingly needing to care for a parent or even occasionally a partner who has developed Alzheimer's disease or one of the other dementias.

Caring for a person with dementia isn't something that we choose to do but can't easily be avoided when it occurs in someone very close to you.

 

Felt that the role of carer crept up on her without her making any conscious decision to do it.

Felt that the role of carer crept up on her without her making any conscious decision to do it.

Age at interview: 62
Sex: Female
Age at diagnosis: 61
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You mentioned some of the things that keep you going as a carer. Sometimes when the diagnosis is made the person says 'I'm not going to take this on at all'. and I'm really just saying why you took on, or accepted the role?

You don't accept the role, I don't think you do accept it. You're living with a person, I mean I'm not married to [my partner] but that doesn't mean to say I don't feel married to him. I came to live with him because that's what we both wanted to do and the fact that he started to deteriorate, it is a gradual process. I could not abandon him and that's how I would look on it, as abandoning him. Not that I'm saying that there won't come a time in the future when he will go into residential because I don't why, you know, he could because of his deterioration to such a point that it's physical deterioration as well as a mental deterioration and I couldn't cope with him at home.

I mean I have to do his personal care now. I have to wash and he dresses himself still, very slowly and sometimes I have to help him, but I think you gradually slot into this role of carer. If somebody came along and said to you 'You're going to be a carer in two year's time, a full time carer,' you'd say 'No way.' But because it sneaks up on you - do you want a biscuit?

Because it sneaks up on you, you take it on and until something goes woomph like that and makes you think no I can't cope any more you just carry on doing it and without realising a little bit more's eroding, a little bit more's happening, a little bit more's happening like you know now he can't speak, now he's incontinent. You know, now he needs twenty-four hour care. All the things that if you were given at a certain point and this is what's down the road for you, you'd say no way, no way, no way. But you just slot into it.

So I didn't, I don't consider I took on, I made a conscious decision to take on the role of carer. I think it was just part of my life with my partner, my life with my partner now involves taking care of him. Which I never thought it would, that was never in my mind when we first got together. But having said that I couldn't at the moment put him into residential care and have any sort of peace myself. Because I'm not ready to let him go and I don't think he's ready to have to go into residential care. I think he's still able to, although he doesn't show it, he's still able to enjoy the outside world and I want him to experience as much of the outside world as we can while he's still able to, while he's still fit. 

I mean he's more physically fit than he's ever been I think because he's lost weight which I think is part of the dementia and partly because he doesn't eat as well as he did and he's got plenty of energy. So we can go into town and I often see him looking round and I think yes, he needs to be able access this sort of life, normal life as well as being in the day centre five days a week. And I wouldn't want to deprive him of that yet and as long as I can cope with it there's not a problem. So we're not going to let him go yet.

The nature of the commitment will vary in different circumstances. The person with dementia may be living with the carer, nearby, or at a distance. They may live in a residential home where, although professional care is provided, the family carer usually still sees himself or herself as the main carer by virtue of the continued bonds of love and relationship.

For many people whose lifetime partner develops dementia, their becoming a carer is seen as a natural continuation of their commitment to each other. It is also something which can, at least some of the time, be a source of mutual pleasure. There is an unspoken acceptance that they will do it better than anyone else could. A carer who looked after his wife at home until she died said that one reason he kept her at home had been the poor care he felt she had when she had been admitted to hospital for assessment.

 

Could not dream of doing anything other than care for his wife just as she would have cared for him.

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Could not dream of doing anything other than care for his wife just as she would have cared for him.

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I mean it, there was no decision to be made in a sense. I mean if you want to be very legalistic about it. It's part of one's marriage vows you know that you, are to be with that person in sickness and in health. We've loved each other for forty years. There have been many times when I've not been well and she's looked after me with, without reservation, without hesitation. I hope I've done the same for her and this was merely a more serious example of that kind of fulfilling one's vows.

I never thought for a moment that I would, not do it, she has looked after me with such devotion and love; it was little enough I could do in return to do the same for her. I, there was no decision to be made, that was it, you know.

And what keeps you going as a carer?

I mean partly that it is, it is partly that sense of still loving you know the person that I, I've known for over forty years but also there is, there is a sense of satisfaction in doing the job as well as you possibly can. There are even things that I, positively enjoy about it if one can actually say that.

I've taken great pleasure and joy in, she now allows me to, look after her hair which I, we, have daily sessions with that, usually with lots of laughter on both sides. She thinks I'm turning into some kind of rather eccentric hairdresser!  And, so that, there is a lot of satisfaction in that.

I do get a great satisfaction when I know that she's nicely dressed and nicely turned out and is feeling good about herself. I love, I think I've said this before, I really have enjoyed, cooking and cooking for her and that sort of thing.

He was proud to give back some of the care she had given him over the years. But there are often circumstances which make caring at home an unbearable burden and one carer whose wife had since died warned people not to be judgmental about those who could not manage so well, particularly in the case of very elderly couples.

 

Describes why he felt he was the best person to care for the wife he'd loved all his life.

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Describes why he felt he was the best person to care for the wife he'd loved all his life.

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I mean some people when they find out that a family member has dementia say 'I'm not gonna do it,' just full stop. Obviously you didn't, you made the other decision. Why was it not an option?

Well because at the very beginning she'd been into a centre anyway, to be assessed and when I saw how that was run and how she was in there, I made my decision then that I would look after her. Which, I was looking after her anyway, but in the sense of her having dimension, dementia, then I would look after her. And, and if she were gonna be looked after anywhere it was gonna be here where she could have whatever she needed and somebody to, look after her interests, because there's so many people whose interests are not looked after.

I don't think I, even thought of anybody else looking after her to be quite honest. I mean I, met her when we were 14 and we'd been together all our lives more or less, so I wasn't going to part with her to somebody else! No, no way.

I don't know whether that answers your question or not, but that's how I felt. I was, quite proud to be looking after her. She looked after me at different times in my life when I needed to be looked after, so it was only natural that I would look after her.

As to the other little bit you said about people saying they wouldn't, care if their partner had Alzheimer's, they can't love 'em very much if they're not prepared to take some care, from the very start. Because you don't know what's in front of you when you get somebody with dementia so how can you say 'I'm not gonna look after 'em,'? Other than you don't care about 'em.

For younger people where a parent had developed dementia the decision to become a carer was, in some ways, more complicated. Where the parent lived nearby and they had a close relationship, becoming the carer was seen as an expression of love, recognition of past sacrifices. One daughter actually left her marriage to care for her mother. But for some carers there was a problem persuading their parent that their help was actually needed (see 'Caring from a distance'). If they had not been close to their parent in recent years it seemed improbable that they would accept coming to live with them. Even where they had been close they had to weigh up the effect having an extra needy person in their household would have on the rest of their family. Carers described the effort of having to decide how to allocate their time between their parent with dementia, their job, their husband and family at home, their grown up children and even grandchildren, all with different needs.

 

Describes how she knew it would not be right for her mother to live with her and her husband.

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Describes how she knew it would not be right for her mother to live with her and her husband.

Age at interview: 59
Sex: Female
Age at diagnosis: 82
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So, but I was aware that my husband had rights and issues within this and, I had discussed it formally and informally, mostly informally with people, on the basis that I couldn't move my mother in here. a) the house, most importantly, the house is unsuitable; but there is another option, you can move you know. We did talk our way through that and it wasn't something my husband wanted to do, it was nothing personal to my mother but he didn't want to move, and I didn't want to move, and besides which she didn't want to move in with us.

And she had said that all her life and continued to say it until quite late on in her illness. At which point she did start to say 'Well why can't I live with you?' By that time she was in the nursing home.

But up until then she'd always said, 'I don't want to live with any of you.' Now, I think if you're committed to a partner, I was going to say married, because that's really what I believe, but I think nowadays people make, or think they have made a similar commitment and therefore the same applies. If you're committed to a partner then that commitment is the prior commitment.

In the same way as if you have a child the commitment to the child takes precedence over the commitment to the other adult in the partnership because the other adult can take care of himself for a bit. But you have to try and balance it all the time. Once the child's needs lessen a little, then you have to try and balance the relationships otherwise you've got, you know it's got to be balanced. This is different, it's a parent who cared for you and now suddenly the roles are reversed.

It is not a parent who has a blood link if you like, or a long familial link to the other partner in the arrangements. My husband knew my mother for years and got on with her extremely well but the fact is she was my mother not his mother. And whilst he was sympathetic and wanted to do everything we could for her he was also, I think by the end of it he, was beginning to get a little fraught over it.

 

Describes how she had to juggle her various responsibilities including caring for her mother.

Describes how she had to juggle her various responsibilities including caring for her mother.

Sex: Female
Age at diagnosis: 80
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So we were going back yesterday and I'm going back tomorrow. So I'm going over to see mum this afternoon and I'm coming back from my daughter 13 on Friday so that I can go and see my mother on Friday afternoon and somewhere in amongst this my husband and I must have some time together. 

Although we've both said that we'd, I mean, he'll come and visit mum. I mean, when I was ill, I had some sort of virus, flu virus or something and he said 'I'll pop in and see mum.' I thought 'Well he'll stay half an hour', and he stayed two and a half hours and helped her with tea, because he loves her, because they've been very close. And his mother had Alzheimer's. 

So yes it is very difficult knowing how to balance it. And right now I just wish I could be signed off work for a month, I don't know what's going to happen next week, especially because work has put an added responsibility on me now. We've got an unqualified teaching, teacher starting and, they want me to, mentor her and there will be quite a lot of extra worked involved next term one way or another. 

And I can just see it coming and I don't know what will happen, something will have to give. So yes it's difficult. I can manage my mother and my daughter and my granddaughter I think, if I could just get rid of work, yes it is difficult. Yes, there have been times when I've been breaking up as it were.

Carers' accounts are full of moving testimonies to their dedication and devotion. People who are not carers may find it difficult to believe the extent of the commitment of a full time carer and the fact that this very commitment makes them vulnerable and needy in a way that is often ignored.

 

Describes why it is important that the carer remembers his own needs as others may not be aware of them.

Describes why it is important that the carer remembers his own needs as others may not be aware of them.

Age at interview: 57
Sex: Male
Age at diagnosis: 56
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I think that it's very easy to run yourself into the ground, keep going at all costs and that cost might well be your own health. So I think it's important too that you've got to take care of yourself otherwise you're not going to be in a position to carry on caring.

So it's important that you look after yourself by eating regularly. By having time out, it's important to get time out to get away from the caring role, which eventually becomes twenty-four hours a day. It's very important to get out and if you can to relax, enjoy yourself and still accept that there is a life outside the caring role.

So apart from being a carer and taking care of the person with dementia you've also got to care for yourself. And that no matter how friendly, how kind neighbours, relations, family are, when they go you are still caring. And they don't always want to understand, do not always understand the situation that you are both in. And it's sometimes difficult to accept that they haven't understood the situation of your partner, or indeed of the carer and have sometimes looked, said things which might have hurt a little bit because of the behaviour that they have, have experienced. 

I think you've got to try to understand that perhaps the carer and other professionals are the only ones who can understand what the carer is actually experiencing. And we as carers should not expect that friends, relatives and other people will understand the situation that we are, actually in.
 

Last reviewed February 2020.

Last updated March 2015.

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