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Carers of people with dementia

End of life

At all stages in the course of dementia carers face the possibility of a time when the quality of life of the person for whom they are caring is so poor that they feel that for their loved ones to pass away would be preferable to continued deterioration. 

One carer described the mixed feelings he experienced as his wife approached the end of her life and after her death. He felt that her total helplessness was degrading for her. He no longer felt able to make any contact with her, he worried about whether the nursing staff were making efforts to persuade her to eat and he felt guilty that he was able to go out and enjoy himself. Only some time after her death was he able to think of her with affection again, without pain and guilt.

 

Felt guilty getting on with his life while his wife approached death.

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Age at interview: 78
Sex: Male
Age at diagnosis: 68
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When she came towards what I've since realised was the end, she stopped eating and drinking. Because I then had these difficult decisions to make and I was obsessed. OK I was still going out to dance because you have to have diversions, if you don't have diversions you would go mad yourself.

But every day I had to run over the decision about whether we were doing the right thing. Whether, and every day I said to myself and I used to say when I got to the home' 'Have you tried her with food today? How did she get on?' 'She had a yoghurt and half a spoonful of custard,' and so on, that was a tremendous turning point because I, the guilt then was different. Am I condemning her to die by taking this attitude you know. And then having to reconcile the guilt with the fact that when I was out dancing I was really enjoying myself. Obviously I couldn't inflict that on other people. I don't know whether that requires a split personality but I suppose I really had one.

But of course, and of course the interesting thing about the final turning point which of course on her death was that just, after the initial emotional impact was the tremendous relief that it brought you know. Again, something that made you feel slightly guilty but you had to reconcile your feeling of guilt, you had to balance it with the fact that it was so much better for her. She'd stopped suffering, she'd gone peacefully, she'd gone without pain, you'd done your best so really you didn't really need to feel all that guilty.

And I must say that although that I wouldn't have believed it at the time and perhaps for some two or three months afterwards, I must say that I now find myself talking to my wife, or to her photograph as though she were still here. But talking without any inhibitions at all, without any feelings of guilt. So that was tremendous turning point really. What ever has happened to her since she died it's certainly made a big difference from my point of view. And we're still, we're still good mates.  

In spite of the pain experienced by carers witnessing the progressive destruction of their loved one's personality and the perceived indignity of the dependent existence they had been reduced to, there was almost complete consensus from carers that neither euthanasia or assisted suicide were appropriate.

For some people this was seen as a 'straightforward moral decision' believing that the manner and time of death was 'a matter for God' and not something that anyone had a right to manipulate.

In many cases, however, people who were not actually opposed to euthanasia felt it was not right to consider it in the case of someone with dementia, who was unable to give their consent at the time the decision was being made.

 

Would accept the right to euthanasia for people able to request it, but not for someone with...

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Sex: Male
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I do agree with euthanasia for certain things. The certain things being where somebody has got cancer throughout their body and they are going to die, which is what I was saying to you about (our friend). Her husband had prostate cancer and he was terminal and he was in pain all the time, even with heroine or whatever it is and other drugs.

If people ask for euthanasia I think they should be entitled to it. Somebody with Alzheimer's wouldn't even know what euthanasia is, so, unless they had something else like cancer that was keeping them in permanent agony, no, for, for dementia, for Alzheimer's I would never agree to euthanasia - ever. But for the other things I would, even for myself.

Some carers struggled with the feeling that their loved one would have wanted to write a living will (Advanced Decision) making clear their wishes, if they had known that they'd go on to develop dementia. Knowing this they felt thwarted, both by not being able to prove to themselves or others that this was the case, but also by the knowledge that 'Living Wills/Advanced Decisions' carried limited legal weight. Advanced Decisions can be made to refuse treatment, but not to request assistance in ending life. For example, a person in the early stages of dementia may make a decision that they will not have a feeding tube inserted if they develop problems with swallowing.  

 

Believes 'Living Wills' should be legalised and doctors encouraged to respect them.

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Age at interview: 62
Sex: Female
Age at diagnosis: 61
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I mean I know, I could have a pretty good guess that [my partner] would be horrified to see himself and would want not to be here, but I couldn't be certain of that, I would never agree with assisted death or euthanasia - no. But 'Living Wills' would make a difference, yeah, yeah.

And do you think generally they are a useful thing to have?

I do actually because to go back to people who suffer from something that incapacitates them to the extent that they couldn't commit suicide and yet they're living this horrendous life, it's going to end in death, in a horrible death and they have no quality of life at all because everything has to be done for them. And they cannot be at all, they're completely and totally dependent, it must be like hell on earth, especially if you're an active mind that's trapped in a body that's not allowing you to do anything. Yes I think, I know 'Living Wills' don't carry any legal weight but, I don't see why they shouldn't if they're properly witnessed like, as an ordinary will is. I think they should carry, I think they should carry weight. But at the moment - I'll go back to something I said before - I think the medical establishment is too prone to keeping people alive at any cost these days. So whatever your quality of life has been, even if you are likely to die within a week they'll still try to keep you alive in many cases. Not every, not all of them but too many of them. So yes I think 'Living Wills' are a good thing and I think they should be legalised.

One woman, who had written evidence suggesting that her husband would have wanted to die rather than reach the state he was now in, never-the-less persuaded herself that there were still some things in his life which continued to make it worth living.

 

Lists the reasons why she is opposed to euthanasia for her husband.

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Age at interview: 62
Sex: Female
Age at diagnosis: 50
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When he was first diagnosed he wrote in his diary 'So it's Alzheimer's. I hope when the end comes it's not too messy.' And I think I can be guided by that, for [my husband] and I have always thought along the lines of it's quality of life, not quantity that matters.  And so I've reached the stage now with [my husband]'s illness where he has no speech, he's lost his mobility, he has to be fed and washed and kept clean, he's doubly incontinent, he's doing a lot of sleeping and I guess the end could come in all sorts of ways and I've got to be prepared for it when it does come. But if the suggestion is that he should be artificially fed I think my answer would be 'No'.

I have also signed a declaration 'No artificial resuscitation in case of heart failure'. On the other hand if you'd said to me ten years ago at the beginning of this illness, in ten years time [my husband] [will] become immobile, speechless, doubly incontinent, unable to do anything for himself, and really has only got his music and nourishment and human touch as the three pleasures. He's also partly, practically blind as well, I should add, technically so, because his eyesight's fine but he's not processing what he sees. And if somebody said to me 'Does somebody in that state have any quality of life?' I think ten years ago I'd have said 'No', but working with him now, caring for him now, there is still quality of life, there are still things that he appreciates.

He likes the feel of the sun on his hands, he likes to see what he probably distinguishes as bright colours, but what they are he has no idea. He likes his music, he likes to be sung to, he likes to be played with in a way that you play with a small child and he loves human contact and cuddles and tickles and all these sorts of things. And yes there is still a quality of life there and that's why I would be against euthanasia but I would be for letting something happen naturally rather than artificially prolonging life. I hope I've made my stance clear because there's a lot of talk around 'What is quality of life' and it all depends where you're looking at it from.

While carers didn't feel in a position to ask for someone's life to be ended, they did feel that they had a responsibility to decide what kind of efforts should be made to prevent death. There are two main situations where the decision whether or not to intervene would increase the chances of survival or hasten death.

The first such situation is to make a decision that the person with dementia can't be made to eat or drink. In some cases this seemed to be caused by the person actually forgetting how to do it, in other cases it was seen as a struggle with what remained of what had once been a strong will. One carer described how, with patience and ingenuity, she managed to introduce some nourishment and teach her mother to eat again. More often carers would be faced with having to decide whether they were willing for their relative to be fed either by introduction of a naso-gastric tub, a PEG tube into the stomach, or intravenously. Many carers had no compunction about asking that such measures were not taken.

 

Found ways of getting her mother to eat.

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Sex: Female
Age at diagnosis: 80
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No I don't think you should force drink, I don't think you should force anything down. One day you know my mother, I think it's a question of finding out what the person understands, because my mother could understand a drink in a cup, at one time it was a baby cup because she couldn't, she was lying down so we couldn't get it, but she understood that's what it was and she wanted it. And now she can understand, she went through a stage where she could understand what a cup of tea was.

So I then said to the home 'Could you put her soup in the mug because she can understand the mug, she can't understand the bowl and the spoon?' So they did and then they forgot the next time so I used to try and get there for a meal a day, the district nurse wasn't there so I used to try and get there for supper. So I put it into the cup and then I thought maybe she can understand what bread was. And the nurse, the district nurse, being the professional that she is said that if your mother goes to a table with others and sees other people eating she'll, she may try and copy which in fact in time to come she did.

And at one time I was feeding her, I said 'Oh, you're doing rather well,' with scrambled egg and she was smiling away, this is lovely, and all of a sudden she started taking it all out because she had forgotten that it was food so she was taking it all out.  And I thought gosh if somebody started putting a load of stuff in my mouth and it wasn't food I'd want to take it out, so I let her take it out. 

And, so I think, oh I don't know, I'm not a professional I don't know but I would say that if they stop eating try and offer them things that they understand. My mother loved ice cream and she used to like the feel of the cold in her mouth and of course the ice cream would melt and she'd swallow it.

So if that's good for her, why not let her eat ice cream at every meal. And in at one stage that's what she was doing. And, so I think it's much better to, by trial and error find out the things that the sufferer is happy to take. So I'd say that, I'd say the food and the drink and the things they can take in by their mouth that they're happy to take, I don't think you should use force, no I don't, at all.

The second situation is the use of active measures to treat illnesses occurring in a seriously demented person. Most carers we talked with agreed that they would be happy to accept the use of antibiotics if they would relieve suffering but would oppose their use for someone who was not able to take them by mouth, where giving them might involve a struggle or use of a possibly uncomfortable IV infusion. Similarly most of the carers we talked with wanted it to be clear that they didn't expect their relative to be resuscitated in the event of their having a heart attack or a stroke.

These considerations may seem obvious and humane but some carers felt that it was not appreciated how difficult it was for them to have to make these decisions. Sometimes it was felt that there was insufficient guidance and understanding from professionals, particularly those working in hospitals. Some carers who could not accept the idea of euthanasia worried that there was an inconsistency in their having allowed the use of morphine to make their relative comfortable when they were aware that in all probability it had hastened the end of their life. They were grateful when the decision was taken out of their hands. (For more on Advanced Decisions see our section on Living with Dying).

 
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Relatives should not have to make difficult end of life decisions. Disputes hospital ethos of...

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Age at interview: 53
Sex: Female
Age at diagnosis: 61
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But it was you know as a family you're put through, in a time of real distress, some totally thoughtless kind of stuff, really thoughtless. I mean you could see by looking at her you know you're not going to want to resuscitate her for a start and what's all this for you know, who is it for all this stuff about antibiotics and drips and tissue, you know who is that for, whose benefit was it for? Was it for my mother's? I don't think it was for my mother's at all. It was to make sure that you know the doctors had done their bit.

And nobody thought about how to let her go in a reasonable way without it being a traumatic experience for all of us, which it was. No, so people don't think about that. I think when we saw the consultant he was quite horrified that we'd been made to make decisions about withdrawing antibiotics. I mean he felt that was a medical decision and that it was nothing to do with us and that we shouldn't have been put in that position, to make those sorts of decisions.

And you know so, but then he should be instructing his junior staff that it is a medical decision and it's not up for discussion.  But at every point in hospital you have to made a decision, everything. You know it, and 'Are you in agreement with this?' 'Do you agree with that?'  And some things you know, some things you don't so you ask the right question, you think you've asked, fortunately on the day we had the discussion about continuing antibiotics the deputy manager of the home was visiting us and said 'Do you want me to stay while you have this discussion?' Fortunately she had the presence of mind to ask all the right questions so that was really helpful.

But I don't, I think the medical profession could get their act together a bit better. I think if you're into hospice care and palliative care you understand that but in an acute hospital the idea is that you do everything possible to prolong life. And I don't think my mother was very well served by the medical profession at the end actually. Certainly no thought, no thought went into it.

One carer had told the staff in the nursing home where her mother was resident that, in the event of an emergency, she would much prefer for them to call a doctor than for them to call an ambulance, the implication being that to stay put and to die in peace was infinitely preferable to subjecting her to the trauma of a hospital admission.

Last reviewed February 2020.
Last updated July 2018.

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