Carers of people with dementia
Day care and respite
Respite is any provision which allows the carer to have a break from what is otherwise a 24 hour per day responsibility. In the early stages of Alzheimer's, or one of the other dementias, the carer may try to manage without outside help, particularly if, as is often the case, the person who is beginning to suffer from dementia is resistant to accepting help. But sooner or later the carer will realise that he or she must find a way to have some time for himself, even if it is only to do the shopping.
For some this may be help from a friend or relative who comes to offer companionship or to hold the fort while the principal carer has a much needed break. (See 'Friends and family'). But in many cases such help is not available and arrangements have to be made either for carers who will come into the home or for attendance at a day centre or for short periods spent away from home. Here we deal with carers' experiences of day centres and residential respite care.
Many carers have a problem persuading the person with dementia to agree to attend a day centre. They may feel extremely anxious about being exposed to new people. Sometimes they may be indignant about the kind of people they find there. If they are living alone there may be a problem if they don't remember which day or at what time they are going to be picked up though this problem is greatly lessened by the wonderful job done by the drivers who provide transport to and from day centres.
Getting used to the day centre but there were problems when she muddled which days she went.
The first one that was tried, I had tried the previous year, I had asked my doctor if there was anywhere she could go to for one day a week or so and he had tried one. I don't quite know, I can't remember how he accessed that, but anyway, whatever, she didn't like it 'It was full of old people.' She didn't like it, the fact that she was going on for 80 was neither here nor there, she was 80 in fact' 'I'm not going there.'
But following the diagnosis she was able to go to a day centre attached to the psychiatric unit of the hospital which was run by this consultant's boss, if you like and he, she went initially one day a week, well in fact almost immediately two days a week because one day a week was too long apart for her to be able to remember what was going on, but two days a week she seemed to be able to cope with. Every week was a fresh week and a fresh experience but the two together with just one day in between, she got into a routine and she went relatively happily for some time, and then three days a week.
Partly that was I think supposed to help me, and it did because I knew where she was from 9 o'clock but the problems were that she had to be picked up and brought back. Bringing her back wasn't too much of a difficulty because they would bring her back in the hospital minibus and somebody would escort her into her flat and once she was there she knew where she was. And we'd set it up as far as possible like her previous flat so all her familiar things were there, just like a slightly different layout by the nature of things, but she would, she would recognise her own pictures and things.
But going was a different matter, she would get the day wrong, she would go downstairs and try and get on board other people's buses and transport which were nothing to do with her. She would refuse to go, they would come for her and 'I'm not going' because she'd been out an hour earlier and tried to go and not been able to go on some other bus or transport she would, a fit of high dudgeon and 'I'm not going' and that was that. But they began, they learned, they knew how to deal with it for the most part, I think the drivers are volunteers but they, they obviously get the hang of it and by and large she attended most of them.
Most of the carers' accounts of day care however describe advantages both to themselves and to their relative. One carer felt that the activities she had been involved in at her day centre had played an important part in slowing down the progress of his wife's dementia. Some carers, particularly elderly partners would stay there much of the time, taking meals, making friends and sharing experiences with other carers. Sometimes a carer noticed with surprise that someone with dementia could be more relaxed about being with strangers than they had been when they were well.
His wife was surprisingly relaxed about being left in the day centre. Sometimes he would stay...
And they sat around talking or listening, and occasionally they'd watch some program on and talked about it. There was often music, there was lunch, and it was very. It looked as though you did nothing, but the person there was in association with other people in varying degrees of dementia. It was, it wasn't disturbed in any way, people sat around and talked, or didn't talk. It was a sort of very voluntary thing. I thought that it was outstandingly run. Small group, perhaps ten or twelve people there, and it's been much disturbed by all the health authorities. [My wife] took it in her stride, she didn't say "What the Dickens are we going here for?" you know, and it became normal, we drove over there.
Occasionally I stayed to lunch. Other times I went out and did something else in the neighbourhood, left her there for two or three hours. And that seemed the most amiable thing. She wasn't the sort of person in her normal life, just to go somewhere like that for fun, as it were, you know. And it was quite striking the way that she was quite content to go there. Partly because of this, and partly because of the extremely good reception, and their brilliance at handling people. Talking and then going away and leaving them for a bit and so on.
In some cases, there may be a problem finding a day care centre that is suitable and able to offer a place. This can be particularly difficult for people with agitated or aggressive behaviour, and although their carers probably need relief more than anyone it may be very hard to find a suitable place. One carer who suffered, because several day centres were unable to cope with her husband, describes the difficulties in handling him which she felt the staff in the day centre should have been trained to manage.
Describes the form of handling that would result in an angry reaction from her husband.
I gave up work to look after him at the end of the first full year after, diagnosis because he was not safe to be left on his own. And for a long time I looked after him myself and only reluctantly accepted things like day care mainly because taking [my husband] to day care I knew would put him among people who were twenty or more years older than him. He liked to be active and yet the kind of day care that was on offer, was really for the elderly and rather frail mentally ill, and he was not like that at all.
Over the years three lots of day care collapsed and some were for the most bizarre of reasons, it was always [my husband]'s fault. I began to feel like I was the parent of a naughty child who was being asked to go into the head's study to be told about his latest episodes. And when I look back on it now I think, 'Hang about, why blame [my husband]? What you are actually saying is the staff are not sufficiently well trained to cope with perplexing behaviours in dementia'.
And I think this is something that I've learned the hard way. There is a very thin line between caring and controlling and nobody likes to feel that somebody else is in control of their life. And I can see that if [my husband] was being prevented from doing what he wanted to do, as he did here, I would without thinking, have to lock the doors and the gates or else off he'd be up the road, he'd be a couple of miles away before I realised that he'd gone. So that's why he kicked the front door in, because he was telling me 'You're stopping me from going out.' And when you haven't got the words to explain how you're feeling, then that's when aggressive actions come.
When I look back at the times when [my husband] was being aggressive and by gum he could be aggressive and he was a very gentle man, a very, very gentle man. Now this is the thing that I think shakes you to your foundations, that somebody who has been loving and gentle and kind and never lifted a finger against you, never bashed the place about, suddenly is hitting you, is throwing the furniture about, up-turning the tea-table with all the tea things on it, and it's because he wouldn't have the words to explain how he was feeling.
And I think every situation when I think about it was something to do with the fact that he was interpreting what I was doing as controlling him. Or, you know, like changing the incontinence pads, he didn't understand what it was all about and so it was just some woman messing [about] down his trousers. No wonder he got angry, no wonder he felt that it was an invasion of his privacy.
In contrast to this another carer had the good fortune to find a centre where the relaxed atmosphere and the skilled care exactly suited her husband's needs. She and other carers shared a serious concern that recently there were signs that invaluable facilities were being threatened with closure.
The slightly 'batty' atmosphere in the day centre was just right. Threat that cuts may close down...
The [name] Unit where he goes, they're just wonderful there. The whole set up is, is very, I don't know the right word really' they're all batty! but in a, in a professional way. They can be quite sort of uninhibited in joining in sharing but they manage, I mean watching [name] who is the manager there, manage [my husband], she is just so good with him. And you know she can get him to go to the toilet and get him to wash himself. I can't get him to wash his hands after the toilet, but she can!
And the whole atmosphere there is lovely. I mean I've been in and out times, unannounced and the atmosphere there is always good. They're very respectful to the clients but they can have a lot of fun with them. And its just, you know I'm just so lucky you know I think to have it and now as I said I've been offered four days. I don't know, I think I want four days but I'm, gonna have to get my act together and do something myself. I don't know.
And [the respite unit] where he goes, that, that is a sort of resource everybody should have but it's probably going to be closed because it's so expensive. It's a five-bedded unit in [place] and it's used for day care as well for
Day care is not free and one carer found when she measured the cost of the freedom it bought against what she earned at work it barely covered it.
Like day care, residential respite care has many advantages but there can also be disadvantages. For an active man who was so difficult to contain in day care, spending time in respite care resulted in a dramatic deterioration as a result of the heavy sedation which the respite carers believed was the only way to keep him from absconding or becoming unmanageable. Understandably this was very distressing for his carer who had to spend the next few weeks getting him back to the level he had been at before he went in.
One carer describes how, because of inadequate nursing, his wife developed pressure sores on her heels so that after her return she had to be admitted to hospital. Another felt that because she was not troublesome his wife had been neglected and this was why she developed bedsores while she was having respite care.
His wife developed bedsores while in respite care and he hasn't dared to leave her again.
So I was away for a month and when I came back [patients name] had got bedsores as a result of them not taking proper care in the nursing home. So I had her at home for 3 months with the district nurses coming in every morning until we got this cleared up and then I said I wasn't going to take [patients name] back to that nursing home which incidentally has since closed and I found another nursing home just along the road where I knew the matron.
Social Services were very co-operative and they arranged a contract with the Nursing Home to look after [patients name] as a special case during the day which gives me from 11 o clock till 5 o clock, Monday to Friday to be a free agent. They look after [patients name] for me there and I find they're very good. But whether they would look after her if I went away for a long time or not I don't know so I haven't risked it (laughs). Once bitten twice shy. So they look after her very well during the day and that's as much as I need so I haven't asked for any more.
Leaving someone for the first time in respite care can be upsetting for everyone. One carer described how he felt that by being very open with his wife about it she had learnt to accept her periods away from him as an agreeable aspect of their life together.
Taking her in for respite care has got easier each time. Between episodes they discuss the nice...
Everyone says its one of the worst moments you have, when you, take your wife or husband, mother, for the first time for a period of respite. Nobody wants that to happen, you don't want it to happen, certainly the patient doesn't, you want life to be as it was before. And it was simply horrid, the first time that we did it, she said she didn't want to go and I was doing it against her will and so on.
And, I had to try to, persuade her that this, a little period apart for both of us would be good for both of us and after all she did like and know the people that she was going to be with. But it was a difficult moment.
We've now had four periods of respite and each one has got a little bit easier. And the way we're working it at the moment is this. We talk about the respite experience as a regular part of conversation. You know, I might say, perhaps with other members of the family here, 'Oh, do you remember [name] when you were in respite you did…' so and so, or 'you met…' so and so; so its, its there as, as part of the memory of our recent past.
And then, and sometimes [my wife] herself will, will suddenly say 'Oh, when I was at [the residential home] last, we did…' so and so. Or, 'You know the thing about [the residential home] is I, I like the food but I don't enjoy being in the dining room because some of the other people don't eat in a very nice way.' So we're able to open up a little discussion, 'Well some of these people are very much, are quite seriously ill and are quite elderly,' and she says 'Oh yes, I understand that perfectly.'
So we quite often have discussions about it and she has memories of the past experience. And then about three or four days before she's going I usually tell her that this is what's happening' 'Remember next Monday it's the start of your week at [the residential home].' She normally says, 'I don't think I'll go this time.' So we then have to have a discussion where again I say 'You know the reason why you go to [there]?' and she'll often say 'Yes, it's to give you a break.' You know and I'll say to her 'You like, you enjoy being there and you know we always, look forward to meeting each other again and have a really nice time when we come, together.' So it's that kind of.
But she forgets from day to day and then on the day itself I will say 'You remember this is the day we're going to [the residential home]?' Now, this last time there was simply no problem at all, on the day, she was quite happy for me to pack her case, she herself pottered round and got things ready. Made suggestions about the things that she would like to take.
One arrangement that worked particularly well was when the centre which was used for day care could also offer respite so the carer and the person being cared for were familiar with what they were getting.
The number of days of day care gradually increased and it was possible to have respite stays in...
So we then with the help of the local Social Services got her into a local County Council owned home which is quite near to where I live and she did, or she was, by then she was going to day care at this home. First of all for three days a week and then it was gradually increased until she was going for seven days a week.
Occasionally, this was attached, a separate entrance, but attached to the home with a connecting door, and occasionally I would leave her. I couldn't pick her up in the evening or late afternoon for some reason, so they would look after her in the home itself, the home properly, give her, her tea. So she did gradually get introduced to the home and then she went in for respite care there instead of the hospital. And she was on four weeks at home, two weeks respite care. Again I was very grateful for this and the home was a home in the fullest sense of the word. No visiting hours, you could go in any time, stay as long as you liked, have your meals with her if you wanted to. Take her out for a walk if you wanted to or stay away completely. And it was very, very suitable.
The amount of respite care allowed for any carer varied considerably from 4 to 13 weeks a year. Depending on the outcome of the Financial Assessment, Social Care may contribute a proportion of the cost of the respite placement. One carer who felt she had not reached the stage where she was ready to give up caring for her husband altogether was allowed 13 weeks respite and by using it carefully a little at a time she felt able to restore herself sufficiently to continue caring for the rest of the time.
While not yet ready to accept handing over the care of her partner she values her 13 weeks respite.
When the psychiatrist said to me originally you'll to decide when your cut off point is I said to myself when he needs twenty-four hour care and when he's incontinent. And he's reached both and I, I'm not ready to let him go yet because to me there's still a person there you know.
So yes, there are still conflicts there and I have to think to myself well, you just got you've just got to get on with it basically. And the woman and the home is very good. She said 'Look if you have a day or an evening and you think I just can't take it anymore, bring him in, leave him overnight'. She said 'You know it's as open as that, just bring him in. If you've had enough, you think I can't cope with this'. She said 'You don't have to phone us, just bring him in and leave him for the night.'
And knowing that makes all the difference. I've never done it yet, but I mean I know the first Thursday of this teaching course I do at the university we have a party for the students and I have to go to that, so I'll put him in respite for that night. I don't have to worry about him.
So there are ways of getting round this but there is still conflict in that I can't do exactly what I want to do. And I, you know, at the weekends particularly, unless I put him into respite. And I have to be careful that I don't go over my thirteen weeks because my daughter's-expecting a baby in August and I want to be available for that. My son's getting married later in the year, I want to be available for that, you know. I'm going to London next week to meet a friend, I want to be available for that so, I have to plan it, you know quite carefully really. I don't want to take up too many nights by being so, I won't say what I was going to say, being so fed up that I take him back to the home.
So we manage. Some nights not so good, other nights fine. The saving grace is he sleeps through the night and that's a big bonus. He doesn't get up and wander in the night at the moment. Touch wood.
Last reviewed July 2018.
Last updated March 2015.