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Carers of people with dementia

Becoming a resident

Once the care home has been chosen, a place agreed and the funding arranged the carer has the task of persuading the person with dementia to agree to the move. This is likely to be difficult and sometimes not actually possible. Various strategies were described by carers. Probably the most satisfactory circumstance was when the home was already familiar, having been used previously for respite care or day care.

 

Describes settling his wife into a residential home.

Describes settling his wife into a residential home.

Age at interview: 72
Sex: Male
Age at diagnosis: 62
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They did a, I think it was a lunchtime visit where [my wife] stayed to lunch plus if I remember right two members of the [name of agency] team and I remember one evening in the same week I went round and we sang hymns with the residents and then we decided the beginning of the following week, each time she'd come back you see. The following week we'd try an overnight stay. Now we'd done an overnight stay at [the local] hospital the previous October and that worked marvellously. I can remember having quite a long chat with the senior nurse beforehand, ironing out any problems and [my wife] stayed overnight and when I turned up to pick her up the next morning she almost said 'Good Lord what are you doing here?' Or words to that effect.

She was totally relaxed then. Then of course that Christmas [the local] Hospital closed. So having got I suppose you would say 'our foot in the door,' we decided we asked the NHS, [name] asked the NHS where else and they said they hadn't got anywhere that was available. So she said 'Well we go it alone do we with a private nursing home if we can arrange it?' Obviously with [name of residential home] and my connections in mind. And that's what we did.

And eventually the second week we did an overnight stay like we'd done at the local hospital], the idea was we'd go round and pick her up the next morning. And [name] came round here the next morning, I mean I don't know how she did it. [Village], she was here at half past six in the morning to monitor it. And she went home at half past nine at night. Back again the next day she would have been for half past six, and she came round to me and she said 'Don't fetch her, she's so relaxed it's silly, it's not going to help.' So she literally stayed that first night and stayed in there. And she was totally relaxed and has been ever since.

When I think back to how anxious she was when we first went to [name of agency] and how they gradually got her so relaxed. I can look back now and see [name] was absolutely right, that was the time to do it. She said she could see I was beginning to go down hill although obviously I didn't realise it and I said I can get through the summer.

So really the decision was almost made by [name], providing I agreed and obviously it was the right decision. It couldn't have gone more smoothly and as she was relaxed I was relaxed.

One carer who had already moved some of her mother's furniture into her new room describes how she and her sister managed the actual transfer. Several carers admitted that they hadn't felt it appropriate to give any warning of what they were about to do, arguing that there was no point giving an explanation which might cause distress but which would anyway be forgotten. Just a few carers said that the only way of making the move to residential care was for their relative to be first admitted under the Mental Health Act.

 

Describes leaving her mother in a specialised residential unit.

Describes leaving her mother in a specialised residential unit.

Sex: Female
Age at diagnosis: 80
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I thought, its no good telling my mother because she'll be distressed so I phoned my sister and she said 'I would come up but…' she doesn't work '…I'm very busy.' And I phoned her back and I said 'I think I need you to come up, I don't think I can do this alone because one of us will need to pack things and one of us will need to chat with my mother and keep her happy. I'm not going to tell her that she's going to stay away.' I just tried to think it all through from my mother's point of view and I knew she trusted me to look after her so I had to do what was in her best interests and I had to do it in a way that she would understand.

So I thought we'd say 'We're going to see the doctor together.' And then I thought we'd say 'Oh, he says it would be a good idea to stay for a little while.' And then I was prepared to stay with her if necessary but I would be guided by the professionals, you know I didn't want to push in and be bossy. You know, I said, 'I will do anything to support her. I'll be here all the time or I'll go away, whatever you think.'

And I stayed with her and so did my sister. As we left her flat I didn't think it would be for the last time, I thought she'd be coming back and the little dog was there, but for some reason the social worker came round. She and I got on very well, she's very similar to me, she'd got a mother-in-law that she was going through the same sort of thing, but not quite so late, and she and I had got very fond. And as I left the flat she came and she gave me a tremendous hug, a big hug and then she turned to go and I think she was trying not to cry herself. Though I certainly was……

So we said goodbye to the little dog, my mother said 'Be back soon' as she always is, and we got in the car, my sister drove and mum sat in the front and I sat in the back and we'd got all her things in the boot and I'd also packed a few photographs and things like that. Because I thought even if she's there for a little while, she wants familiar things, family photographs and us, and the dog. And I also packed some photograph albums. I'd made her up an album of her life, about a year before and what I'd done is, where - I know I'm dotting about - but I'd got lots of photograph albums and books which I knew she was interested in, which I'd got ready in the house for when these friends went by, and when the carers went in, for something, a point of contact that mum could talk about. And mum could say 'Oh yes, that's when I went to Africa.' She can't talk about them now but she's still got them.

So I packed all these things to take with her, quickly, and it was only the other side of town this place, it was only what, three miles from the door, so I knew I could… Anyway we went and they said 'She's fine and she's quite happy.' She didn't want us to go, I said 'Will you ring me and I'll come back.' Now I don't know how to deal, I don't know the professional way to deal with this sort of thing, I know my gut reaction is to stay with her. (momentary noise) But I suppose it's like a mother leaving a child at play group. You get these clingy mothers and if the play group leader says 'Well go, we'll call you if we need you.' So I said 'Look, you've got my number, ring me and I will come back..'

Leaving a relative in a strange place was a painful experience for most carers. There were differences in the advice given and the course taken about contact between the carer and their relative in the early period after admission. Some carers visited daily, took part in the home's activities and helped with caring of their loved one. Others had been encouraged to allow some time for settling in. One woman who had young children and whose husband's dementia was progressing so rapidly that she was quite unable to continue to look after him at home, was persuaded not to visit him for a month, which she later regretted.

 

Regrets having had no choice but to let her husband go away for three months to a residential home.

Regrets having had no choice but to let her husband go away for three months to a residential home.

Age at interview: 52
Sex: Female
Age at diagnosis: 46
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When [my husband] went in there, he didn't go in, when he went in permanently it wasn't going to be permanent. He was going to go in for three months and give myself and the children some, a decent break because a week isn't long enough. A week is, you're only just beginning to feel normal again and then they come back and there's always some upheaval when they come back so it's not. Three, the idea was that he would go for three months and they, the terms that they took him on were that they would take him for three months but that for the first month he must have no contact with his family.

And I think that was a serious, serious, I should never have agreed to it but I didn't have any alternative, there was nowhere else that would take [my husband] and I could not continue to look after him at home. But they wouldn't let his mother see him, or his sisters and he, we couldn't phone up and talk to him and that was very difficult. I don't think it's much easier nowadays but at the time there was nowhere that would take early on-set dementia and the nursing home rules were such that homes for the elderly had to get their permissions extended to take people under 65, which was a lot of work for them. So even homes that would be prepared to consider it, there were a lot of administrative hurdles to jump over before they could take somebody under 65. So it was and continues to be a very, very difficult problem.
 

Another carer on the other hand felt that it had been the right decision not to warn his mother of her imminent move and not to visit her too often as this allowed her to establish relationships with other residents. Several carers described how their relative didn't seem aware of the significance of the move in some cases confusing the home with their previous place of work. One carer gave advice on how staff could make use of this confusion.

 

He was told his mother's reaction when she was first moved to a residential home was normal.

He was told his mother's reaction when she was first moved to a residential home was normal.

Sex: Male
Age at diagnosis: 65
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I took a decision not to tell her that she was going. We went to have a look around and I discussed the idea with her. But in terms of actually taking her there on the day that I took her there I have to admit I rather kidnapped her. I think almost inevitably if I'd have given her the option of going she wouldn't have wanted to so she would have got upset whatever had happened.

She was very upset the day that she was there, staying there and the first couple of weeks when she was very unhappy and upset and distressed, which according to the staff in the home is perfectly normal. And that was quite difficult to cope with and in fact at several stages the staff just told me to go so that I wasn't around inflaming the situation and she also had then to confront the idea of getting on with people there and interacting with people. And they were very, very good about that. Obviously they've got a lot of experience of that.  

So in those terms it didn't feel quite like sort of taking and dumping her somewhere and driving off, but it was quite difficult to deal with emotionally. It did feel like I was abandoning her to some extent even though I was trying to visit often and she's not in prison there you know we go out.

And, probably took her a full month to settle down, but since then she's very much got into the swing of things there and has established a routine. I think that's very important and the staff strive to give her a routine around which to base her day. And whilst it might not seem very fulfilling to us I think it's what she needs. There's not a huge amount there, but then that's all she can cope with so.

 

Describes the damaging effect on their relationship when she seemed to be responsible for stopping her husband from driving.

Describes the damaging effect on their relationship when she seemed to be responsible for stopping her husband from driving.

Age at interview: 62
Sex: Female
Age at diagnosis: 50
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Care staff in terms of the nursing home, day care and respite care, they're working their socks off, they really are trying so hard but there aren't enough of them and the one thing that a person needs is individual attention and it's the one thing they can't give. And not enough care staff have up to date dementia training.

Misunderstandings abound. There's a good example in the nursing home where every day, every afternoon this elderly chap would take all his clothes off in the sitting room. The staff would scurry around collecting up his socks and his trousers and stuff and then I discovered that actually he was a rower from [university] in his youth, and so of course, every day in the afternoon - because there would be no lectures in the afternoons - he'd be stripping off and going off to practise on the river and therefore what he needed [now] was some situation where he could feel that he was doing that; going with it.

And there was another lady who was forever running away with the tea trolley and then it turned out that she was in charge of the WRVS team at the local hospital. So why couldn't she have a trolley of her own with some bits and pieces on it, to push up and down the corridors? And it's this need to go into people's history and find out who they are and to set up some kind of 'play' that reflects the kind of jobs that they used to do. It's imagination isn't it with staff as much as training. So they're lovely people trying very hard to do an extremely difficult job, but I do think more training, more imaginative solutions ways to finding more imaginative solutions would help everybody both the person with dementia and every body else who happens to be with them as well.
 

For many carers, the guilt associated with handing over care was never fully relieved; particularly when their relative begged to be brought home even after a year. One carer admitted that he felt bereft of his role as carer and dealt with this by continuing to visit his partner several times a week. Another carer who reluctantly allowed her husband to be admitted to residential care describes how she was able to take him back home for his last months and give him the care she had been unable to manage earlier. 

 

Felt guilty putting her husband in a home and her glad she could take him back before he died.

Felt guilty putting her husband in a home and her glad she could take him back before he died.

Age at interview: 62
Sex: Female
Age at diagnosis: 50
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When I was talking about 'letting go', I found it very difficult to put [my husband] into a nursing home because he seemed so young, he was only 57 at the time, but also it was, I was having to acknowledge that I thought I had failed. I couldn't give him the care he required without exhausting and doing my own health in,  that was really the bottom line. So there was a tremendous feeling of guilt, putting him into a home, and accepting that other people can deliver the care, and learning to let go.

The difficult part for me in the middle phase of the illness was dealing with a man who became practically a stranger and I think this is the most traumatic thing that can ever happen to a couple to a relationship. Because they're behaving in ways which are bizarre, out of character and certainly [my husband]'s aggression was very hard for me to take and I found that I actually reached a point of beginning to hate him. And hated him for what he was doing to me, hated him for what he was doing to the house, in a way hated him for making a prisoner of me as well as of himself, this tremendous feeling of being caged.  Which it is, when you are a carer you are caged.

I think I put him into the home before that hate became a reality, it was lurking, lurking resentment, and then of course when he was in the nursing home, although I was laden with guilt, laden with feelings of inadequacy that I'd failed him, I pitied him that he had to be taken away from his own familiar surroundings. At that moment in time it was right because I could not take any more or else I think I would have gone under for the third time.

And so I was very grateful for that nursing home placement but then when [my husband] calmed down and moved into the final phase of the illness, which isn't anywhere near as difficult, well there's a bit of resistance from him now and again, but he's not aggressive, then I felt ready to have him back home again.

Many carers felt very strongly that they should still be the most important decision maker and insisted that the staff of the home involved them whenever changes had to be made in management or treatment. They also often felt that they were still the person most able to cajole their relative into doing things the carers in the residential home might have decided were impossible. (See 'Strategies - some suggestions from carers'). For some carers the move to residential care of their husband or wife was experienced as a painful separation. One elderly carer admitted how lonely he now felt at home, without the coming and going of carers which had filled their days before his wife went into residential care. Another would wake in the night worrying that his wife might be uncomfortable in some way and that she would be unable to make her needs understood.

 

Describes the loneliness he experiences now his wife is no longer at home with him.

Describes the loneliness he experiences now his wife is no longer at home with him.

Sex: Male
Age at diagnosis: 69
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But I'm having quite a problem sorting out my lifestyle now because the house seems very quiet and with nobody seriously to sit down and eat a meal that I've, I've cooked. I've found it very difficult to really enjoy it the way I did before.

And then, as I say I'm getting a lot of help, but I don't see the carers any more now, now that [my wife]'s in full time care they have, have more on their workload with people who really need their help and there's no aid needed for their, any further showering and etc like that. So I'm just left now with the lady coming today who is a psychiatric nurse for the area who's going to just have a general chat and see if I'm OK and then I'll be on my own. But, unless I need some help, that is.

 

Is upset when he worries about her being alone and unable to communicate particularly at night.

Is upset when he worries about her being alone and unable to communicate particularly at night.

Age at interview: 75
Sex: Male
Age at diagnosis: 67
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And all these things are very distressing when you have time to think. The worst time is waking up in the middle of the night after two or three hours sleep and wondering 'Is she comfortable? Is she too hot in bed?' She hasn't got the, although she's got the physical ability she hasn't got the wit to throw a cover off. 'Is she cold on a cold night? Does she need another blanket?' Of course she's, and she's well looked after, I know but these are the worries that get at you all the time because she's so helpless. 

She can't indicate in any way her feelings, she can't smile, cry, frown. The only way you can hold, you can try and interpret her feelings are by eye contact and some, sometimes, some days you don't get any, other days after a while she'll look at you with eyes like saucers and questioningly sometimes, you feel' 'What's happening to me?  What's it all about?' These are the feelings you get.

The amount to which carers continue to visit depends on many factors. It may not always be possible to find a suitable residential home which is near enough for frequent visits. The carers themselves may have other commitments which make visiting difficult. But there seemed to be a feeling that however good the staff at the home it was important that they realised that a family member was watching out for the welfare of their relative.

Many carers visited with devoted regularity, even when the person they were visiting had ceased to recognise them and was no longer aware of how long it had been since their last visit. Some carers admitted that they found the time spent visiting was much more satisfactory than time spent together previously at home when they were overwhelmed by having to do all the caring. One carer described how important it was to her to continue to celebrate birthdays and other anniversaries even though her husband didn't really understand what was going on.

 

Explains why she feels it is important to continue to observe anniversaries.

Explains why she feels it is important to continue to observe anniversaries.

Age at interview: 61
Sex: Female
Age at diagnosis: 70
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Are you still observing things like birthdays and anniversaries?

Oh yes, of course. Well he had a birthday just before he went in but yes that's very important. And I've suggested to his children that they send things. Only one of them sent a birthday card this year and I was a little bit hurt by that. And they, one of them said 'I thought it would confuse him.' And I thought well he still likes, if I take in letters for him, he likes to open them, he might not make any sense of them but you feel important if you get a letter through the post don't you.

And one of his grandchildren has sent him a letter, a very nice letter saying 'This is your granddaughter [name] speaking, I'm your son [name]'s daughter,' just to make quite clear who she was! Beautifully written, it was a very nice letter.  And his daughter, she sent a letter, a photograph of the children, a school photograph and a postcard which I've put up in his room.  I got a frame for the photograph.

No I think it's important for me as much for him actually. You know I wouldn't want to forget that. Nothing else is coming up until December but hopefully we'll do something for our wedding anniversary, and certainly Christmas. Well I'll face that when it comes, but I don't quite know how we'll deal with Christmas. No I mean it's, maybe it's for me as much as him, well I'm sure it is.

Last reviewed February 2020.

Last updated March 2015.

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