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Carers of people with dementia

Complicated emotions

For people who understand what it means to be a carer, carers are 'heroes' who have accepted an enormous burden, often giving up their lives or putting them on hold to ensure the wellbeing of the person with dementia. However, instead of being satisfied with what they have done, many carers will talk about the guilt they feel because they should have done more or behaved differently at various times. 

One source of guilt is the thought of what it's like to be a person with dementia, alone inside their confused mind. Many carers felt guilty that they had 'put' their relative into residential care. Carers felt guilty if they took a break, leaving someone else to do the caring. They felt guilty for having made decisions behind their relative's back. Guilt that they hadn't been able to do more. Guilt that they had resented the changes caring had to their normal life due to caring. Many felt guilty when they remembered the way they had reacted to unusual behaviour before they were aware that it was caused by illness.

 

Regrets his lack of patience when his wife first showed symptoms of Pick's disease.

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Age at interview: 75
Sex: Male
Age at diagnosis: 67
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I suppose, I suppose in the beginning I lacked understanding, real understanding of her problems. This is all on reflection now because this is being wise after the event. I lacked patience. This is when she was living at home. I would shout sometimes at her when she'd done something wrong, something silly, or what seemed to be something silly. And of course you do lose patience I think anyone who doesn't is entitled to be, well you can either be knighted or sainted, I don't know they can please themselves which they prefer. Because you, if you shout, I am by nature a bit quick tempered, and if you shout at someone you could bite your tongue off afterwards and instantly. But you don't think, you don't think 'I will shout at my wife in two minutes time because she's done that', because you wouldn't shout would you? It's something that's instant, you see.  It's, it's a combination of frustration, anger and worry for them that causes you to.

Then when she was in respite care, she'd come home, I found I was changed, I had more patience. But I found then at the end of the month it was going again and it got worse and worse. And I think my attitude to her changed, really changed. I was very upset when she went into, when we had to make the decision that she would go permanently into this residential home. That did upset me and changed me a lot.  

One woman had met her husband in later life. She felt guilty that, when unattractive traits appeared as a result of his illness, she suspected he had never actually been the loveable man she thought she had married. One carer who describes the terrible sense of loss he feels now that his wife is in care and rarely recognises him, tells carers that they should never feel guilty.

 

Recalls the feelings she had about her husband before she understood that he was developing...

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Age at interview: 61
Sex: Female
Age at diagnosis: 70
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I think, I think there have been times where I've sort of been aware of how his behaviour has been and I sometimes perhaps I was thinking of his, his illness as being partly responsible for what was going on but partly it was like a sort of, personality and his behaviour which had been I say somewhat cavalier, sometimes and perhaps not the most socially acceptable.

But again I'm getting a more sort of mellow view of some of the things that were happening. But you know I guess some of it is going to be personality and some of it is going to be the, the illness. I think I'm taking a more benign view of it now.  Maybe more of it was illness. Certainly anything that happens now I just you know I just can't take it as deliberate or you know aimed at me. I think possibly a year ago, possibly even six or seven months ago I was taking it more as a personal affront sometimes. But perhaps it wasn't, wasn't deliberate.

But certainly, thinking back I suppose I was saying sometimes well this is [name] and this is the illness. Some things were, were sort of, I did feel were different. And I was certainly getting a lot more emotional about what I felt was the, the slights or the dismissive behaviour. Now I just you know, well this is it. I can be a lot more philosophical about it.

 

Describes his wife's moments of lucidity and exhorts people not to feel guilty for their...

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Age at interview: 57
Sex: Male
Age at diagnosis: 56
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Yes, so even, even, even though we know that the situation is going to get worse and that it's a long, long gradual slippery slope or decline, then I look for the positive things that I can. Now I'm not caring as a full time carer but my wife is in the home and when I visit her I suppose, I don't know ninety-nine percent of the time it's difficult to communicate but it's just a question of perhaps satisfying myself that I know I've been and that I'm still caring and I'm still her husband.

But on that odd one percent when the positive thing comes out like when she does, the odd occasion when she mentions my name or she might mention something that is recognisable then the positive things are the things that I want to hang on to. And certainly remember and come away with, not the fact that after two minutes she doesn't want to see me because she doesn't recognise me and wants me to leave. But I hang on to the positive things now.

And that, I think that's important for a carer to do is to attempt, which is difficult, very, very difficult, but attempt to turn off from the fact that she might drink out of anybody else's cup or eat anybody else's food if it's laying around because that's just part of what's happening. But that one thing might come out like a kiss or a name or a slight recognition, are the things that we've got to hang on to because eventually that will go as well.

So I think, it's very difficult to think positively in a very, very, very negative situation. But I still think that the carer has got to try and think positively. And I think one of the important things of a carer is not to feel guilty. And it's easier to say than to do because on lots of occasions, and I still sometimes feel very, very guilty, perhaps of the things I didn't do, or perhaps of the things I didn't say.

But I thinks it's a, a carer should never, never feel guilty if they have done what they think is right throughout the period of time that they are caring. It's very, very easy to be negative and not to be positive about what you've done because you always think you haven't done enough. But never feel guilty. And always, I was going to say pat yourself on the back for being positive, that's difficult to do, and I don't mean pat yourself on the back, but think of what you've done as positive and not negative.

One possible source of guilt was the fact that carers had found it necessary to lie. For some it was a matter of principle that they avoided lying if at all possible. For instance one husband described how he had not been prepared to give his wife medication, particularly sedatives, without explaining to her why he was doing it.

 
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Describes his reluctance to be underhand with his wife.

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Sex: Male
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Have any been difficulties with your wife taking medication and if so how did you deal with it?

On the whole that's gone quite well. And particularly once we settled down into, a regular pattern, of morning and evening tablets. Occasionally she is reluctant and, what I usually say to her then is, remind her why she's taking them, that these are designed to essentially to make her feel calm and, and, and content and as relaxed as, as possible. And it is important that she takes them and that these tablets have been, recommended by her consultant, who she has a great respect for. And normally she will then, take them although she says they're horrid to take.

So I don't think there have been any particular difficulties at all. Occasionally when she's in a particularly stressed state she's absolutely refused to take them and on one or two occasions she's thrown them across the room, and at both points I've simply let it go for that time and when she's calm we resume the, the normal pattern of, of taking tablets.

What do you think in general about surreptitious medication?

I mean I would be very reluctant to do that, I think you know you have, you have to try to be as honest as you can, and I think you have to keep talking to the patient about why they're, what the drugs are, what they're doing. What they're, when they should be taken, without dwelling on the, you know, too much on the, the nature of the illness.

And I've found that that has been sufficient. I would be I think very unhappy, if I was having to do it surreptitiously. I think particularly, I felt strongly about the sedatives that she's had for a time when she was in a particularly anxious state. And, it was tempting to slip that into a cup of tea or something when she was really angry, but I didn't do that. And interestingly, she quite often said in a fairly terse way 'Oh you're, you're trying to keep me calm are you?' or something like that. So she knew exactly why, what they were for and in a way intuitively understood why at a particular point she was taking them, and I, you know I'm, I'm happy with that. So I'm really against anything being done surreptitiously.

Why's that?

I just think you have to try to be, let me start again. I think our marriage has been based on being truthful and honest and open with each other about everything. We've, I don't think we've had any secrets from each other at any time. And, I just felt I wanted to maintain that kind of quality of relationship between us. So it would have come very hard indeed to, to have been doing something which was quite against the way that we'd operated in the last forty years. It's as simple as that really.

Several carers described how they used 'white' lies when asked by the person with dementia what was wrong with them. Others described using lies to avoid upsetting their relative, for instance, when asked when their next visit would be. There was a strong feeling that the memory of an upsetting bit of information was much more likely to be hung onto than the number of days between one visit and the next. One woman described her worst 'lie' which was her cutting up of her husband's credit cards to save them both from financial disaster.

 
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Realised that though she tried to be totally honest with her mother it was not always appropriate.

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Age at interview: 59
Sex: Female
Age at diagnosis: 82
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I knew that she would feel as I did about losing control of her life and her environment and her decisions because she's my mother and we, I grew up with her and you know it's part of life's experience for me.

And I knew how frightened she had been of exactly this thing happening to her and it had happened and there was nothing that I could do about it, absolutely nothing. So the whole thing was a horror really. The only way to deal with it was to try and be honest with her when I could be, and I couldn't always be, and I had to rationalise that and know that there were times when it was better not to be honest for the sake of her well being, reassuring her rather than worrying her, which is not a comfortable situation to be in, no.

Alongside guilt come regrets. Thinking of things which might have been done differently. The daughter who can't get over feeling that she should after all have found a way to have her mother live with her. A husband who had lovingly cared for his wife until she died, looking back, regretted that he hadn't been able to do more for her.

 

Regrets that she couldn't devote herself more completely to caring for her mother.

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Sex: Female
Age at diagnosis: 80
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I think if I had agreed to send her to a home any earlier than I did I would have felt I'd really betrayed her. But I knew when she said she wanted to go home, she went through a stage where home was where she was with her mother and father and brothers. And then she went beyond that stage, this is still while she was in her flat, where home was she didn't know where, so then she said she wanted to be in my home, where I was. And really that's what I should have done, really, really, really.

Even now that's what we should have done, we should have had a bigger house 'with a place for her in it and nursing staff and I should have given up my job. I mean she actually said at one stage 'I know you'd have to give up your job, but I'll pay you.' And for the sake of a few years, two, three years out of my lifetime, that would be nothing would it, nothing. I know I have to think rationally, I have to think well there are some lovely carers where she is and where she is, is as near home as any other home could be if it wasn't my home.

 

Regrets he couldn't make his wife's life better as her dementia became more profound.

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Sex: Male
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I wished I could have done more for her, yeah, I wished I could have, I don't know how, but to make her life happier and better than just like being, more or less a cabbage, say towards the end. I would have liked to have kept her cleaner than I did. I would have liked to have took her to the places she loved but she wouldn't have understood. She used to love going to garden centres. And I did take her when, when she wanted to go and we got to the stage actually where, me and the carer used to take her and um, she'd no sooner get there and, 'I want to go home.' So we'd come straight back.

It would have been nice if she did still like the gardening, like the theatre and things like that but obviously its not to be is it, you know, so, yeah, I would have liked to have done a lot more for her personally, than I could have done. I did what I could but I would have liked to have done more.  

Perhaps the most painful emotion described by carers is the sense of loss for a future they had to forego. One carer described recognising this was a terrible grief, and a lingering bereavement. She found it helpful to face up to the feelings she developed through living with someone with dementia and to accept that she sometimes had to allow someone else to take over her role as carer.

 

Describes her grief over losing her partner as a companion and solace from remembering the good...

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Age at interview: 62
Sex: Female
Age at diagnosis: 61
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A few weeks ago, and I can't remember what brought it on, I suddenly started to think about [name] as he used to be and he used to think, and I started to think what a smashing chap he was. I met him in later life; I had already been separated from my husband about three years. He had been separated from his wife about twelve years. And I met him by chance.  I actually was a Special Constable [place] when I moved into [town] and he came to interview me. And I remember thinking 'Oh, I like him, but I bet he's married!' Well he was, but he was separated.

And I started to think back to those days and I thought, yes, that was what this man was really like. And I started, I started to write the story on the computer because I thought every day now I'm confronted with this, a man who is restless, who has his, his horizons have been completely closed in, through no fault of his own and this is what I'm aware of at the moment, this is how I'm judging him.

But if I look back and remember how he was, that was the man he used to be and that's the real man, that's the real [name], and I started writing it down on the computer, my memories of his and my relationship. And I found that helped a lot.  Because I was not just focusing on what he is now but what was and what could have been, and what should have been if everything had gone you know, normally.

So that was a turning point.

I think also, the psychiatric nurse came to see me two or three weeks ago and I was talking about going, going to London to Christmas, I was so indecisive about it that I phoned her up and said 'Please come and talk to me about it because I feel I need to go for my children's sake and my own sake, but I feel so guilty.'

And she came and she, amongst other things she said 'There's an awful lot of people living on their own with dementia,' and she said 'they, some of them are living in squalor and they've got nobody to look after them except carers who go in.' and after she'd gone I thought, yes she's right, so really he's very lucky. He's got somebody here who's looking after him all the time. All his needs are catered for, so why should I feel guilty going and having a few days out. And that was a bit of a turning point, that sort of jolted me back into thinking, well maybe you're doing too much for him.

Last reviewed February 2020.
Last updated October 2012.

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