At all stages in the course of Alzheimer's disease carers are facing the possibility that a time may arrive when they consider that the quality of life of the person for whom they are caring is so poor that they consider that it would be a blessing if only they could die now rather than continue to deteriorate.
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 fussed about whether the nursing staff had made sufficient 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 and without pain and guilt.
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 who was unable to give their consent at the time the decision was being made.
Some carers struggled with the conviction that, had they been able to anticipate their forthcoming situation, the person who could no longer be consulted would once have been eager to write a living will making clear their wish to have assistance in ending their life. 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' carried limited legal weight.
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.
While carers did not feel in a position to ask for someone's life to be ended, they did feel that they had a responsibility in deciding what kind of efforts should be made to prevent death. There were two main situations where the decision whether or not to intervene would increase the chances of survival or hasten death.
The first such situation was where the person with dementia could not be made to eat or drink. In some cases this seemed to be caused by the demented person actually forgetting how to do it, in other cases it was perceived 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 tube or intra-venously. Many carers had no compunction about asking that such measures were not taken.
The second situation, where a 'Living Will' could have been explicit but where in its absence a carer had to make a decision, was the use of active measures to treat illnesses occurring in a seriously demented person. Most carers agreed that they would be happy to accept the use of antibiotics if they would relieve suffering but that they would be opposed to 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 they wanted it to be clear that they did not 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 what emerged was that some carers felt that it was not appreciated how difficult it was for them to have to make these decisions and that sometimes 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.
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.
For more information on the later stages of dementia see the Alzheimer’s Society website.
Last reviewed October 2010.
Last updated October 2010.
