It can seem like a terrible waste of time, living with someone with dementia – the hours of doing nothing very much, and the increasing pressure of thinking what else you could be doing.
There is a Vietnamese Buddhist monk, who tells a story about his friend, asking his friend if family life was easier than being on his own. I quote:
Then Allen said, ‘I’ve discovered a way to have a lot more time. In the past, I used to look at my time as if it were divided into several parts. One part I reserved for Joey, another part was for Sue, another part to help with Ana, another part for household work. The time left over I considered my own. I could read, write, do research, go for walks.
But now I try not to divide time into parts anymore. I consider my time with Joey and Sue as my own time. When I help Joey with his homework, I try to find ways of seeing his time as my own time. I go through his lesson with him, sharing his presence and finding ways to be interested in what we do during that time. The time for him becomes my own time. The same with Sue. The remarkable thing is that now I have unlimited time for myself!’ (The Miracle of Mindfulness, Thich Nhat Hanh, p.2.)
Well, that’s good Buddhist advice for parents, but it is more difficult, I think, when you are with someone with dementia, and there is no developmental task to make sense of the slowness and the repetition.
I have been reading Everyman, by Philip Roth, which is a fine study of mortality. He describes how a man may be ‘dazed by his diminishment.’ (p.87). ‘Old age is not a battle; old age is a massacre’ (p.156)…. ‘he was in the process of becoming less and less and would have to see his aimless days through to the end as no more than what he was- the aimless days and the uncertain nights and the impotently putting up with the physical deterioration and the terminal sadness and the waiting and waiting for nothing.’ (p.161).
Early onset dementia brings old age forward – it gives you more time earlier in life to think about these things. I used to think that youth was wasted on the young – could we make an argument that old age is wasted on the old – learn to appreciate the emptiness of existence while you are still young enough to despair about it – or, if you are a Buddhist, to accept it?