Atul Gawande has written a book about a topic doctors mostly aren’t taught, and patients don’t want to think about, but the book has been on the NY Times bestseller list for many weeks and has a four and a half star rating on Amazon. Hmm. He must have something to contribute. Can we face Being Mortal?
One morning several years ago, I woke up with a headache, walked over to my father’s flat (I was visiting him for a week) -and lost the next several hours until the evening. No memory was laid down, so just odd disjointed flashes came back later. It turned out to be harmless, (a T.G.A.) but I have thought many times since that that moment, walking out of my door, might have been my last living moment. My last visual awareness. My last memory. The opening of a door into darkness. I might never have come back. It takes an experience to make most of us think about Being Mortal as something that does not only affect other (=old, sick etc) people. “Don’t talk about the war.”
Yet the book is about living, not dying. What do we want when we are old and/or dependent? Our chances of getting a life we feel worth living is much higher if we think about it beforehand. And that is the key to the book, I think. To think about what makes our lives worth living at every stage.
This will amuse my kids who laugh at how incapable we their parents are in making ANY decision, however limited, and have seen us waiting until a decision is made for us by circumstances or health. At present we are nomads, moving between three regular spots plus one occasional one, to keep in touch with each of them and our grandchildren, and the extent of further planning has been to say “When we can’t face Heathrow one more time, we will stay wherever we are at that point.” But this hides unspoken assumptions and is subject to real-life limits. At present we have medical insurance to cover this, and pension to cover our costs: we can cope with the exhaustion and stress of travel, and we know we can in fact stay either side of the pond. So we “don’t talk about the war.”
This will not last for ever. We never expected it to continue for the last eight years, with little change. And the likely point of change is medical. When someone (of any age) gets seriously ill, their world becomes very different from the world earlier generations experienced. Gawande gives many examples of negotiating being mortal, drawn from family, friends and patients. His Indian grandfather lived until over 100 in the family compound, over which he still ruled, supported by generations of his family, living on his own terms even when that seemed unsafe.
Since the recent explosion of medical interventions (antibiotics, heart operations, chemotherapy etc) more people have been surviving longer- but not always with any good quality of life, and with an increasing need for somewhere to live and be looked after, other than the old poorhouses. (The chapter detailing this 20th century development is fascinating.)
I see this in my family history just as Gawande does in his. One of my great grandfathers was kicked in the belly by a horse and died a few days later: I imagine internal bleeding and damage. My maternal grandfather died of cancer in his 80s, at home with little but what pain killers were available and comfort care from his unmarried sister who had already nursed their other brother. But more recently, my mother in law avoided, several times, what usually follows the phone call saying “You’d better get here soon…” and she was discharged twice from hospice before the final bout. She had many, many bouts of treatment and tests for many medical conditions before the end. Last spring my husband and I went to the hospital one day for some inoculation or test and then met friends for lunch nearby-and found ourselves laughing that this is old folks’ social life. My own mother, though had one round of radiation therapy for lung cancer, then hospice care and home nurse visits and was able to see her first great-grandchild and die at home.
This is not the blog for my Living Will or even decisions for Power of Attorney for Health matters. But most of us want to be independent. Most of us want to live and die at home. Most of us don’t want to spend our last weeks in the ICU. Most of us don’t want to spend our last months feeling like death in the hopes of holding off death for an extra couple of months. I have seen people who never wanted the ICU/hospital death still enduring that because each step in attempting treatment can lead inexorably to the next, and the next. Reading this book might help us decide how much to let ourselves get processed into a health system that is always aimed at cure, or one further possible attempt at cure. I have read that doctors tend to do less for their own illnesses than they do for their patients.
What alternatives for living do we have that leave us with the particular things that keep us feeling joy and living the best life we can each day? Loneliness, helplessness and boredom at the banes of old age with its limited physical abilities. How do we prioritize our living situations to deal with these?
Much of Being Mortal talks about the alternatives people have been inventing. The friend who recommended the book to me (herself a retired doctor) particularly mentioned the Eden Alternative. They have dogs! My father would have loved that, in his Sheltered Accommodation which was in other ways ideal for him and my mother for over twenty years. They have parakeets (=budgies) My father did love his budgies. The ten principles of the Eden Alternative are really worth pondering. Not mentioned, but something Bud and I had seriously considered, is Co-housing. We visited several. Bud convened a group to plan one in Humboldt County, and we had a prospective site and an architect. Then came the 2008 financial meltdown, when we could all have been undertaking payments on a new facility while struggling to sell houses which had suddenly lost a third of their value. We are also still theoretically on the list for a Friends’ House – assisted living in Santa Rosa,California- which we signed up for about 12 years ago! We have recently emptied our storage unit.
And we live with our daughters until we need to face any next stage. Three different homes in different communities certainly keeps at bay the Loneliness, Helplessness and Boredom.