A Sense of Control

My 85 year-old mother recently had a letter from the local NHS Trust asking her to detail what would be important to her in any future care.

Great, we thought: the NHS seems to be interested in quality of life rather than simply in prolonging it. (My mum has always been adamantly against being kept alive, as she would put it, ‘for the sake of it.’)

In his bestselling new book, Being Mortal, the surgeon and New Yorker writer Atul Gawande argues that when people have a sense of control over the end of their lives, their last years, months and weeks are more fulfilled. Autonomy, the feeling of being the author of your own life, continues to matter to the old and the dying. And when Gawande has to make medical decisions – whether to operate, for instance – it’s much easier if he knows what matters to his patient. If she feels that life will only be worth living if she can continue to use email, or his main concern is being able to carry on watching sport, it’s easier to weigh up the benefits of intervening against likely side-effects.

So I was pleased that my mother was being asked to outline her preferences now, while she could. Unfortunately, all the NHS can capture is a snapshot of what she thinks at the moment. My mother has been diagnosed with dementia. What if, as her condition progresses, she changes her mind? And if she does, how will she tell us?

When it came to the questions about what would happen if she could no longer live independently, she was violently and implacably opposed to living with us. As for residential care, she said if she couldn’t live in her flat, she’d rather die. She doesn’t altogether accept her diagnosis; but the fact is, the chances that she will need care at some point are extremely high.

Those who care for people with dementia often argue that even as memory, thinking and reasoning may be eroded, ‘personhood,’ doesn’t change. You are still you. So when my mum can no longer speak for herself, do we assume that the opinions she held for a lifetime, before parts of her brain stopped transmitting, still hold?

I’m not sure we can. People change their minds all the time. It’s often observed that the closer people get to death, the more tenacious of life they become. Accepting that my mother is a person now and will be a person in two years’ time doesn’t mean that all her views are going to be exactly the same through that period. And even if she would rather die than go into residential care, we aren’t in a position to kill her, even if we wanted to (which we don’t).

There are all sorts of things that might change. I don’t think that listening to or playing music appears anywhere on the form she’s filled out, but music often becomes a lifeline for people with dementia. Musical responses persist, perhaps because music can be experienced in the moment (already, my mum can’t follow an entire play in the theatre but she will happily listen to a symphony). Something that doesn’t figure much now could come to be a reason for living.

As the histories, beliefs and sense of accomplishments that make up our identity erode, we are forced back into finding a sense of self in our shared humanity. The humane approach to caring for someone with dementia is to focus on what a person with Alzheimer’s can do, what their life history has been and the importance of their relationships, past and present; and on how all those things can contribute to having a good day now. So, on balance, I am pleased that my mother is being asked to articulate these things while she can. But I can’t help feeling that she is receding from me down a long dark tunnel and at some point – in a year’s time, or five – she may still feel strongly what she wants from her care, but she won’t be able to tell me.

By Geraldine Bedell.


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