Frequently now, Anna may say, ‘I’m going to die.’

One of the criteria for NHS continuing care is palliative care. By that they mean a prognosis of six-eight weeks, and I assume that this applies mainly to cancer patients. But I am thinking that there is an argument for thinking more long term about palliative care in relation to dementia.

I have been clearing the spare bedroom upstairs, so that Anna can sit there, when she does not cope with the stairs. I found an old book (1973) celebrating fifty years of the Tavistock Clinic, and there was a chapter by Colin Murray Parkes on ‘attachment and autonomy on old age.’ His research was with people dying of cancer in a hospice and he identified a number of commonly held fears:
fears of separation and loss, fear of failure to complete life’s tasks, fears of ill that may fall one’s dependents, fears of losing control of physical functions, fear of physical pain or mutilation, fear of the unknown or unfamiliar.

Well, I think all of these apply very much to Anna, except that third one – she does not worry about me after she has gone. That part of her imagination is now lost, where she could envisage a world without her in it. But separation and loss – that is a constant anxiety, as she tries to keep me in the room, or thinks of her own mother and father and becomes distressed. She has been furiously angry about not being able to do her work – ‘I used to do that!'– but this concern is now fading a little. The control of physical functions; that one is obvious. The fear of physical pain gets enacted all the time, when she is with carers. And the fear of the unknown – the nameless dread – is in her face.

It is helpful, I think, if those with her keep in mind that she is dying, though she may live for years yet.