Hmm. It’s been a strange and disquieting week down in Devon.
As you know, I’ve spent years immersed in the arguments and theories around medical ethics. I’ve also been my mother’s nominated proxy for medical matters for five years, during which time I’ve steered her safely through a number of decisions relating to her health and wellbeing. No big deal.
Until this past five weeks. This time I’ve really had to stand up and be counted. Because Mum has now lost the capacity to contribute in any meaningful way to the decision-making process. Not even to nod approval. And big questions have arisen which need answers.
Suddenly the responsibility seems much heaver. I confess this has taken me by surprise; objectively I’d have expected it to be a natural progression from the experience up to now when in reality I’ve been spelling out the facts and options, and drawing the conclusions for her, and she’s agreed or not. But this time there’s a conflict between what I know she’d choose and what we believe to be better for her. And in real life, practicalities, limitations and logistics make for much more hazy and messy pictures that the textbooks suggest.
Fortunately I have five siblings so I’m not alone in this, even though it’s my name on the papers. We’ve all been involved in lengthy discussions about competing needs, wishes, interests, rights and responsibilities. But step by painful step we’ve inched towards a solution with which we all agree.
In this case we started off with more than one ethically defensible answer – three in fact. Events have ruled out one of them, leaving two. Compromises have been made and we have now made our choice on Mum’s behalf. We have done our best; we can sleep with a clear conscience. And believe me, sleep has been somewhat elusive of late.
Through this experience I’ve come to the conclusion that there can be no substitute for agonising. And we have certainly agonised over Mother’s predicaments. 
It’s been hard to concentrate on ordinary everyday life. But now the decision is made I hope to get back to some semblance of normality. After all, in my absence, the new book came out … there is work to be done!