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Carers of people with dementia

Advice to other carers

  • Make the most of what you have and be flexible in your response to changes in behaviour. Be prepared to put yourself second.

 
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Learning to be flexible.

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Sex: Male
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I think you have to be terribly flexible, I think its no good having any kind of set idea of how things are going to go. The life for a carer for someone with dementia is so, uncertain, that I think you don't have to be worried if things don't go according to plan, you have to change your plans, your ideas, you timetable almost from minute to minute and I think that flexibility's quite important.

I think you have to be able to find your pleasures in small everyday things. Many of the, large elements in a relationship, in a marriage maybe have gone. For example for us I think maybe holidays are no longer going to be possible.  Who knows maybe we'll find a way of solving that problem but at the moment that looks to be unlikely.

Therefore, you have to sort of look for things that will give you, that will give you pleasure on a, on a day-to-day basis. It may be just a walk in the park, a really nice meal, listening to a favourite piece of music, those kind of things, small everyday things that just give you pleasure, both of you pleasure from, from minute to minute.

And I think trying to find opportunities to laugh and that's not always easy to do but, if you can I think, it just helps to lighten the burden I think.

  • Don't go over the top trying to make your relative look as though nothing is wrong with them.

 
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Be sensitive to real needs rather than what people are going to think.

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Sex: Female
Age at diagnosis: 80
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What do you think makes a good informal carer?

Well I think that person's, for the benefit of the person being cared for, that person needs to be very sensitive to the needs of the person they're caring for. And very sensitive to the needs because sometimes you can look at, he needs so and so and so and so and so and so. And that might be what you think they need but it's not always what they really need. And I mean quite frankly I want my mother to be clean but I would rather she was happy than super-duper clean. So OK she needs to be clean, she needs to be healthy and clean, I don't want her to be dirty and smelly, of course I don't. But maybe now and again you can let certain things go for her happiness. You have to be normal about these things.

So I think-yes the carer needs to be sensitive to the true needs of the person they're caring for, from the sufferer's point of view. And then they need to have the back up to be able to meet these needs, and the strength to be able to do it.

  • Take care of your own mental and physical health. You need to be well if you are going to be able to continue to be a good carer. Accept help that is offered but don't be upset if some people don't altogether understand what you are going through.

 

Get all the support you can and preserve your own health if you want to continue as a carer.

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Age at interview: 57
Sex: Male
Age at diagnosis: 56
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On hindsight I think that the carer should seek all the support that they possibly can from whoever is available, whether it's a CPN, whether it's from a branch worker from the Alzheimer's Society, whoever it is. Because I certainly thought all the way along the line that I was coping OK, and, and perhaps I was. But there are certainly times when you wonder if you're coping OK. You're wondering if you're doing the right things. Not only for the person that you're caring for but also for yourself. 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, we are actually in.

  • When you find yourself feeling down about the future, try instead to remember all the happy times you have had together.

 

Remember all the good things rather than dwelling on the past.

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Age at interview: 75
Sex: Male
Age at diagnosis: 67
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I sometimes feel with my wife's total inability to communicate that this is when I feel very depressed about it, I feel it's like a death without a funeral. But I would say to anyone who feels like this, 'Don't sit and dwell on it, don't dwell on the present when you feel depressed, don't dwell on the future, think of all the good times you've had, the places you've been, the things you've seen and shared'. It, we used to sail and my wife used to crew for me, she was never very keen but she used to do it, and we enjoyed it, and these were the kind of things.

We, we went to the States and delivered cars right across America, from New York to Las Vegas, from Las Vegas down to Florida, these things, these are the kind of things you've got to think back to. This was twenty-five years ago I'm talking about, about this business in the States.

When I was 65 and she was 63 we, with two haversacks we had three months going around the world. We had no, we used to laugh because we had no baggage to collect, and we decided anything we wanted we'd buy as we went because it was gonna be hot anyway and this is what we did.

And you've got to look back, force yourself, and you really have got to force yourself to look back at those memories. And memories I think are better than photographs, because photographs can sometimes depress you, but memories you can flit from one to the other quickly and also you just look at the particularly good things, you remember the good things.

But it's not easy but this is the only way out of it sometimes I find, because in the dark hours, the early hours of the morning are probably the worst, when you wake up and you start thinking. But try not to think about the present or the future at those times. If it's daytime get up and go out, go and see somebody, talk to somebody. If you like a drink go and have a drink, so there's somebody to talk to. Whatever your interests are go out and do them. Don't sit there and mope because I find if I sit there and mope it gets worse and worse and worse.

  • Be honest with yourself about your feelings. Professional counselling can be really helpful to you.

 

Being honest with yourself about how you feel and get help for yourself.

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Age at interview: 62
Sex: Female
Age at diagnosis: 61
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Well first of all I think, admit to your self how you feel. Because I think I have gone through all the negative emotions that a human being is able to go through. Anger, terrible, terrible anger at the whole situation that means [name] has been, hit by this awful thing. I know there are thousands of other people in exactly the same, well not exactly the same situation, to whom it's happening and I have every sympathy for them.

I hope they don't feel as strongly as I do, the terrible anger about the situation. The terrible anger towards him personally and then the guilt, because its not his fault. He didn't choose to be like this. In fact he'd be appalled if he could see himself.

The terrible grief. I got a book out of the library on understanding dementia and it said 'Dementia is like a continual bereavement, because unlike a proper bereavement where you have the great grief when you lose the person because they die, you've got, you're losing a bit of that person all the time and you're watching it happen. So day after day you're grieving for the bit, perhaps the next bit that's going, or the bit that suddenly comes to you that day, so terrible grief.

A curtailment of your own wants, I'm talking to dementias, to carers now aren't I? So don't be frightened to acknowledge your own feelings because they're quite normal and I think if you try to suppress them you're not going to do yourself a service at all, you're going to actually maybe cause yourself mental problems yourself, depression and so on.

And if you need to talk them over with somebody, go to somebody like a counsellor, get the so, not the Social Services so much because they're not just involved with dementia, get the psychiatric services, get the help of somebody who'll come along and sit and listen to all your moans and say 'Look, you're quite normal to be feeling like this.' Look after yourself greatly.

  • Go on a course to learn how to nurse, particularly learn how to lift someone without injuring yourself.
  • Find out as much as you can about the condition from books, internet, other carers and professional contacts.
  • Contact The Alzheimer's Society.
  • Contact with other carers is one of the best sources of support.
  • Tell people what's happening. You will be surprised to find how many people have had similar experiences and can help you with sympathy, understanding and advice.

 

The advantage of talking to other carers.

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Age at interview: 60
Sex: Female
Age at diagnosis: 80
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I think it would have helped if I could have joined, if I'd belonged to the local Carers' Association, but again I didn't know how to find it. Certainly I think while, while the person concerned is still capable of doing things, get the, get the Power of Attorney, try and get some, opinions of what they want and try and get, try and get your finances sorted out. 

And tell people. I think the big, the important thing I'd say to carers is 'Tell people'. I was amazed once I went round and started saying to people that I'd got a mother with dementia, how many other people were in this situation. And how many other people were coping, and again certainly if she had been a case in this area, I was able to find out a great deal about the residential homes.

So I know in theory, Social Services doesn't tell you. They, they say 'You've just got to go and have a look.' But, I knew somebody who knew a social worker, so she told me what the social worker told her. But certainly I would say to somebody who's is a carer, once you become a carer, go tell everybody. Introduce it into your conversation because there's an awful lot of people with knowledge and help. But unless you, you mention it, you don't find them.

  • Find out your rights and entitlements and don't be ashamed to insist on getting them.
  • Organise Power of Attorney sooner rather than later. It becomes much more difficult if you leave it until the illness becomes more advanced.
  • Be sure to pass on to professional carers any strategies which you have found to be useful.

Music is well recognised as being pleasurable for many people with dementia. One carer regretted that she hadn't mentioned to her husband's carers that he still enjoyed improvising on the piano and other more unusual hobbies.

 

You are the expert so be sure to pass on what you know to the professional carers.

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Age at interview: 62
Sex: Female
Age at diagnosis: 50
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Another turning point was a realisation that, I'm sorry if this sounds a bit arrogant but it's the way it is, you assume that when you hand somebody over for say day care, that people know a lot about dementia, know a lot about [my husband] and that they're the experts. It's not necessarily so.  Another was when I realised that for example none of the information from the hospital about where the particular deficits in [my husband]'s brain were, therefore what his difficulties were, and therefore what his particular needs were.  None of that information seems to travel automatically to the people who are trying to give care and so the turning point for me was when I realised that I had to take the initiative and say 'Look however bizarre it seems this is what pleases him. You know, at autumn time, he likes to go around on the grass, picking up interesting coloured autumn leaves and then looking at them afterwards and then putting them, hoarding them in a box.' And that to him was a meaningful - don't ask me why - a meaningful activity, far more meaningful than the bingo or whatever.

And I wish that I had volunteered more information about [my husband] rather than just assuming that when I delivered him at ten o'clock that they knew what to do. They would tell me at the end of the day what they'd done with him. It never dawned on me that I should be saying 'Would it be possible if?' Then I used to say 'Is there access to a piano? Could he play the piano for a bit?' 'Oh yes there's a piano' you know,

And I think another turning point was a realisation that - and this comes quite late on - the carer is the expert. You know far more about the person you're caring for than all the doctors and the workers put together. You know the whole picture, you are the expert, and again, if that sounds arrogant, but a carer's voice must be heard I think in planning out what is right and proper for the person you're caring for. And if you feel that something is wrong then you've got to have the guts to say so, whether it's to do with the care, the medication, with anything to do with their well being, if you think that something is not as it should be, and it's very hard, but you have to speak up as politely, as firmly, but as firmly as you can. And that was another turning point because I just assumed that I was just a carer and everybody else was the expert. It's as though they all have bits of our jigsaw, but they don't have the [whole] picture on the box and the carer has the picture on the box and knows what it needs to look like.  

Advice for professional carers

  • There should be a check list to cover all the information a carer is going to need and someone should be responsible for making sure the carer has got a copy of this.

 

There should be a checklist of things carers may need to know.

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Age at interview: 62
Sex: Female
Age at diagnosis: 61
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I do think one thing about the professionals that's a bit negative, what I've found out has been by a process of gradual finding out, talking to other people, listen, hearing something, reading something, being told something. And I feel that there should be a sort of a checklist held by and I'm not sure whether it should be the GP, the psychiatrist, the CPN, the Social Worker that should run you through all these things. I mean practical things, things like Power of Attorney, I was told that, I already knew it, it was already too late. Things like you get a reduction on your Council Tax. Things like you have, you can have a disabled badge sticker for your car.

Sort of things that you find out by talking to other people who are in the same situation, 'Oh did you know about such and such?' 'no', 'oh well yes'. I mean two people at the Alzheimer's Society Carers' meeting didn't know about the Council Tax and City Council didn't know about the Council Tax, and they had letters backwards and forwards saying 'no you're not eligible,' 'yes we are,' 'no we're not,' 'well we know somebody at our group who's got it,' 'well then that's wrong they'll have to pay it back again'. And then when it came down to it [town] City Council was wrong. The person who dealt with it, and this chap got so many hundreds of pounds back in back pay.

The county council were fine, I just wrote to them and said were we eligible. They sent me forms they sent the doctor forms, filled in and we got the reduction. But I can't remember how I got to know about it. And then somebody else told me about the disabled sticker, just a friend of mine and I do think there should be a checklist somewhere of all these things that you should, that you are eligible for or you should be thinking of because you don't know from one day to the next what you should be thinking of or who you can go to.

And if you're somebody who's very retiring and very shy and not one who's willing to get on the phone and find out you just sink. Well you must do. That's what worries me, is these people who don't like to make a fuss, don't like to make waves, don't have much confidence, spend all their days looking after their partner or whatever and fall through the net. And don't get very much help or support because people don't realise they need it.

I think I said in my last interview when you asked me what advice I would have for the professionals if you, if you find somebody coping too well, be rather suspicious. Because probably underneath they're not coping all that well at all, or not as well as they like to make out.

  • All professional carers should be aware of the full range of available resources including the ones they are not personally responsible for.
  • Don't overlook the elderly isolated carer who makes few demands.
  • Listen to the carer, no-one knows more about their own situation than they do.
  • GPs need to be encouraged to listen to carers who tell them they suspect a relative may be developing dementia.

 
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Families should be allowed to discuss their concerns about a relative who may be developing...

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Age at interview: 59
Sex: Female
Age at diagnosis: 82
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I think GPs should be more enlightened than some of them are, I think they should be, as I say, give family's credit for intelligence. I know not everybody wants to know it, not everybody wants to hear it, but if a family is coming to a GP and saying 'We are concerned about our relative, there is inappropriate behaviour, this is what is happening.' I don't see that it breaks any medical ethics for the GP to say 'What are your concerns, explain them to me fully, what do you think is happening' and then put his own informed input in. And if he's asked directly 'Is there any sign of dementia?' I believe if he thinks there is, he should honestly say 'Yes I think there is.' Because people deal better with what they know than what they don't know in the end.

Last reviewed February 2020.
Last updated October 2010.

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