Yes, I’m still thinking about it. My old age and my agency. In the last year, we lost my darling Dad, and my wondrous, powerful Mum is now languishing in care, actually in her own worst nightmare.
I’ve gently kept researching and thinking about the impetus of my first notice, last year, which is to find a way to take my life if I end up with dementia, like both my parents. I think it may be premature to keep refining a ruleset, although that’s certainly needed. Rather, learning that I’m not the only human on Earth who has experienced what I have has been good for me. The number of friends and people I meet who have had the same terrible experience of live decay in their lives, and the open sharing of pain and our collective loss is a solidarity I haven’t felt before.
But let me be clear: I will want to take my life at 75 years old—if not before—if I have been diagnosed with dementia, which as we all know well now, is, in fact, a terminal disease. These annual messages are designed to build up a crystal clear picture of my intent that cannot be put aside because of diminished mental capacity.
I’ve been casually reading more about it all, and have discovered a book called Final Exit: the practicalities of self-deliverance and assisted suicide for the dying by an American named Derek Humphry. It’s basically a How To book on suicide, which struggled in its early years not been widely published, but has always been in high demand, and is now a bestseller. There are requisite warnings early on and throughout that if you’re considering suicide because your life is hard this book is not designed for you. I was able to find a scan of it on Internet Archive which was annotated in pen by its readers with certain grim highlights I would not have chosen, but are chilling and revealing all at once; a sliver of personal relevance I happen not to share, but remains thought-provoking. The book also refers to what loved ones can and should do if they decide to be involved (but not actually perform the procedure!), and I have taken some comfort in those passages, particularly because of such intense sympathy, I think, but also direct parallels with our family’s situation. Mum had actually talked quite a lot about suicide a few years ago, and now I realise it’s probably because she knew or suspected she may have had dementia as well, but, as a voracious reader her entire life, framed it like this passage from the book: “If reading or watching television is the great comfort of life, loss of sight is a tremendous blow if added to the knowledge that death is impending.”
A quick note of advice from the book is to establish a Living Will and something documented to state which person or people in your life have the authority from you to make health decisions on your behalf, both of which also reiterate your directives. There were a few 'looking back on the year and the people we've lost' reminiscence-type articles around, and I enjoyed this one on New York Times, She Sold a Painting for $165 Million and Gave It All Away, particularly reading about wealthy divorcee, Agnes Gund, whose class I could only aspire to, but like the sound of very much.
This general topic has also led me to the idea of co-housing, the conscious choice to live amongst others. Given I’m living solo now and had a bit of a tough time over Christmas/New Year, and imagine I’ll likely be solo into the future unless something outrageous happens, and that I’m actually a very social creature who loves a laugh and has had to wrestle with and counterbalance loneliness, having a happy next 23 years or so of life is something I’m beginning to plan for. Co-housing is a piece of it, I think, and it’s different to co-living, which you might see in a London housing estate, where folks live in flats close to each other but don’t especially interact or even know each other. Co-housing is architecturally considered to prioritise communality. Each person—in a group of ideally around 20-30 people so there’s a semblance of democracy and cohesion—enjoys relatively small private living space, and the place emphasises sharing space, meals, decisions, and responsibilities. Already, and often it’s groups of women, there are communities springing up around the world like this. Some of which are designed from scratch, others co-opting existing spaces or housing. In Australia, there’s apparently a trend to extend or refashion existing housing stock into co-housing.
I stumbled on a lecture at the Architectural Association in London—Sick Design, about how architecture and health intertwine—and then stumbled on to their fantastic bookshop, where I picked up a book on designing co-housing (where I learned about the 20-30 number) and a book on small Japanese living spaces.
I really enjoy finding ideas that are new to me but which others have already developed a great deal, and I suppose these are two of those. Death and living all at once.
Incidentally, I’ve also been listening to bestseller The Let Them Theory by Mel Robbins, which is helpful for trying to not to worry about what other people do or think of you, which is a weakness of mine. It’s easy and I’m finding it useful to reflect with. I’ve also started journalling. I’ve tried to start before, but this feels a little different. I write exactly one page each morning (although I have already missed two since Dec 31st!) about whatever. I'm not sure if it's helpful yet, but lots of people say it's helped them.