When the Fogies were around the age I am now they announced that, when they got too old, they would sail into the Bermuda Triangle and vanish from this dimension. They never actually defined “too old”. Nor did they ever acquire a boat, or learn how to float one. But as far as I can tell that really was pretty much the full extent of their planning for the final stage of their lives.
As it turned out, they downsized a couple times, and eventually moved into a tiny apartment in a senior housing complex. It was more cramped than it needed to be because the Olde Buzzard never actually retired, and although his clients (he was a PR consultant) drifted away one-by-one, he refused to give up his gigantic desk and related paraphernalia. So, to the Marmeee’s enormous frustration, his “office” occupied about half their living room space. But that room opened onto a covered stoep, where the Olde Buzzard spent many hours building the framework for Marmeee’s garden. Beyond their tiny garden there was a common area – green lawn, and trees loud with the birds that used to bum off them when they sat out on the stoep to eat their lunch. A pair of plovers raised a family nearby every year, and toward the end of every afternoon the hadedas would fly overhead, shrieking. And they had lots of friendly human neighbors, too.
It was only after Marmeee died that we had to move the Olde Buzzard into a facility specializing in Alzheimer’s patients. That place was also quite homey, and although his room was small it also opened directly onto a garden. Not that it mattered, really. He didn’t have to be there long; he moved on just a couple months after she did.
Anyway, maybe not having much of a plan wasn’t such a problem for them. I mean, maybe the Bermuda Triangle would have been more interesting … But on the other hand they may have ended up being vivisected by some otherworldly mad scientist … Or even being passed over as unworthy of interest, their little boat eternally becalmed in the middle of the Sargasso Sea. Instead, they got to watch their plover neighbors and grow flowers, and I think, by the time they got there, it was enough.
Sometimes, when I get mad at the Hubbit for glomming down more than his share of pie or ice cream, I threaten to put him in a home the day diabetes eats his legs and dumps him in a wheelchair. I wish this were an empty threat, but realistically he’s too heavy for me to lift. I end the threat with, “And don’t think I’m going to live in some crappy little studio apartment so that you can afford to go to a nice home!” Again realistically, even if he went into a cheaper facility, this is America, the Land Of Fuck-All Is Free, and I’d probably end up sleeping in my car. I’ve always been pretty easy-come, easy-go with money, and the Hubbit refuses to think about it at all … so, yeah, not a lot of late-life-stage planning happening here.
Mind you, sleeping in my car is sort of part of my game plan for after he wanders off into the Great Workshop In The Sky – assuming he does so (a) before I head for the Heavenly Library And Chocolate Shoppe and (b) before I achieve an extreme level of decrepitude. I’ve thought for a while that the best way to see America – which is something I’ve not done enough of in the quarter century I’ve lived here, the Hubbit not really being one for travel – is from the (admittedly questionable and probably over-romanticized) perspective of a van. So … the plan is a van, and then we’ll see. It’s not much of a plan, but it’s what I’ve got. And after all, if there’s one thing I learned last year it’s that you can’t depend on life to follow a plan. So, you know … why get hung up on making any?
I have a friend who’s a bit older than I, and in way better health, frankly, but she’s getting forgetful, and that scares her because her parents both developed quite advanced Alzheimer’s before they popped off. She lives alone – that is, her son inhabits a room in her house but he really lives inside his gaming computer. In any case, he’s not the nurturing type. So her plan is to off herself as soon as she feels she’s seriously lost the plot. She used to have an actual deadline to do this, but then the deadline year came, and she was busy, and her forgettery wasn’t actually interfering with her quality of life. Plus when I mentioned it a little while ago, in a spirit of friendly mockery (because how else does one respond when a friend is chatting about her suicide plan?) she’d forgotten ever having had a deadline – and since I don’t particularly want her to do herself in so long as I’m capable of fixing us a couple of mugs of rooibos tea, I changed the subject.
I really don’t think she’s ever going to get worse than moderately dotty. She’s healthy, active and energetic, involved with friends and volunteer activities, engaged in caring for a huge menagerie – horses, dogs, cats and birds. She’s conscious of the need to take care of herself, and she’s far too bloody-minded to tolerate anyone trying to tell her how to live. Also, she has me to hassle her to Write It Down, and Use Your GPS, and Remember The Last Time You Did That? Yeah – You Have Done It Before And This Is What Happened So Maybe Do Something Different This Time, Okay? But nonetheless there’s a flaw in her plan, in that she’s relying on her brain to tell her when her brain doesn’t work any more.
So I’m her backup plan. In her mind this means I’m named executor in her will. Once she’s “taken care of business” I will be responsible for selling her house, providing for her animals, and handing whatever is left in her estate to her son so he can find some more convenient place to set up his computer. (He doesn’t drive, so if she’s not around to ferry him he needs to move closer to town.) In my mind it also means I get a power of attorney, so that if she wakes up one day and can’t remember how to wipe her own bottom I can sell her house, provide for her animals, set the son free to follow his dreams, and pay for her care in the best place her money can buy. (She’s a good friend, but I’m probably not going to be the one doing any butt-wiping. And I’ve also firmly rejected her suggestion that I remind her that it’s time and hand her the pill bottle, pistol, or whatever.) So that’s her plan, and I think it’s a good plan … provided I outlive her.
It just occurred to me, dear reader, that I might owe you an apology. I really don’t mean for this to be a Grow-Old-And-Die Blog, and I’m sorry that’s been so much a focus here lately. I do think about other things – in fact I mostly think about lots of other things – but what got me writing about this today is a book I’ve just finished reading that’s set me to pondering the Important Stuff. I want to tell you about it, because I cannot recommend it too highly for anyone who expects to get old and/or die, or who is closely involved with anyone who is likely to experience getting old and/or dying.
Being Mortal, by Atul Gawande, is a doctor’s thoughtful discussion about how modern Western medicine has lost its way in terms of meeting the needs of aging and dying patients. And he talks about how we might choose a different way.
For starters, he questions our assumption that doctors are the people we should be turning to for much of this care – because not all aspects of one’s hoary decline are medical. The problem with Western doctors, he says, is that they’re focused on fixing things. And when something can’t be fixed they don’t really know what to do with it, so they get stuck in a cycle of flinging fixes at the unfixable, often to the great detriment of the patient’s quality of life. Even when they want to recommend that a patient pass on further treatment, often they don’t know how – and the patients don’t get it; they think the doctor doesn’t care. Add just a soupcon of scare politics – dire warnings about “Death Panels”, for example – and any suggestion that people should, at some point, be allowed to quietly lie down and, you know, die … well, “cruel and unusual” doesn’t begin to cover the standard American reaction.
Or, when the doctor says a treatment might give them “a little more time”, they don’t understand that the doctor is thinking in terms of months, for which they will likely pay dearly in suffering. So they embark on suffering expecting years, and the end is heartbreak and devastation.
I’m not suggesting that doctors don’t have a role to play in keeping us going, of course. The guy with the scythe tapped me on the shoulder a year and a half ago, as you know, and then again last August, because – according to my doctor – custardy blood is “one of those things that happens as we age”. So, thank you, Western Medicine, that I’m here now and writing this instead of … not. And thank you also for putting the Hubbit back together each of the many times he tried to take himself apart, and for keeping him trundling along despite rusty joints and creaking organs.
But one can think of this kind of care as being on a spectrum – and over on the darker side of the spectrum is the case of my old friend Gummy. He was in a home when I met him – one of the better ones, but it still smelled of shit and boiled vegetables, and the residents spent most of their days scattered about the place in their wheelchairs, staring at the walls. Sometimes they sat in rows, side-by-side, but you never saw them talking. An hour or two before mealtimes they’d start working their way to the dining hall, and they’d sit around tables, staring sometimes at the tablecloth, sometimes at the door to the kitchen, still not talking.
I met Gummy outside church one holiday weekend, when he was slumped in his wheelchair waiting for the facility bus to pick him up. I chirpily asked him, “And what will you be doing tomorrow?” and he dealt me a withering stare and said, “What do you think I’ll be doing?” So I, shamed into being real, started visiting him, and that progressed to occasional outings and invitations to holiday dinners, and for a while he was pretty much part of the family.
He was slow, soooo sloooowww, and as the years passed he got slower. Sometimes, at first, and then later most times, he’d fall asleep mid-conversation when I visited him. We had the same conversations over and over again… I was so sad when, at last, I attended his memorial service and his older friends and colleagues shared their memories of him. I’d known him for years by then, but there was so much I hadn’t known, because we simply didn’t have those conversations.
Anyway, back to the point of this post … I used to accompany him to medical appointments, and one day … I forget the details, but I think he was having difficulty swallowing. The doctor, like most of them, tried to insist on talking to me – because waiting for Gummy to ponder a question and then, sooo sloooowwwly, whisper the answer, cost money, I guess. Or maybe he thought he was stupid as well as slow. In any case, as always, I glared and told him, “Just give him time – he’ll get there. He can speak for himself!”
Only on that occasion he couldn’t. And I quickly realized I was also out of my depth.
Or maybe it was the doctor who didn’t explain his options properly. The doctor, a middle-aged Asian man who kept his firm body packaged inside his smooth skin as neat and tidy as pork sausage in its casing, was clearly uncomfortable with the conversation.
He explained that difficulty swallowing was “one of those things that happen when you get old.” He said Gummy had two options: to continue eating as best he could, or to have a feeding tube surgically inserted into his stomach. He warned that there could be complications with feeding tubes … I don’t remember what the potential complications were. What I do remember is that the doctor really, really didn’t want him to have one. The doctor clearly thought it was time for him to just … let … go. To go gentle into that dark night.
But he couldn’t say that, especially with me glaring at him, so he talked about the feeding tube and potential complications and no longer being able to enjoy food.
Gummy said, “I don’t really enjoy eating any more anyway. My smeller stopped working years ago.” But then he said that he was worried about possibly dying if he kept losing weight. He wasn’t conscious of being hungry, you see, so he wasn’t afraid of starving – but he could read the numbers on the scale. I tried to ask him if he was sure, but ran out of words in the face of his puzzled stare. How could I ask him if he really wanted to keep living? How could I suggest it was time for him to die – that that’s what his body was trying to tell him?
Well, they inserted the feeding tube, and there were issues, and after a few weeks he ended up back in the hospital, where someone inserted the tube at the wrong angle and his food went into his abdominal cavity, and that was that, although it took a few days.
I don’t think he suffered, but really I don’t know, because to my eternal regret and shame I wasn’t there. I visited him only once during the week he was in the hospital. For a few years I had been his closest and most faithful friend – we had fun together, going on outings around town. But then the Hubbit and I moved to our farmlet some distance out of town, and visits were harder and became less frequent (although I still did the necessary stuff, like doctor visits), and one day he’d forgotten my name and I had to write it down in the little notebook he kept in his shirt pocket. So by the time we reached the end I didn’t know what to do about him dying … so I pretended it wasn’t happening until it was too late.
In Being Mortal, Gawande discusses a different, more honest, more accepting way of approaching our mortality. He discusses different ways that seniors might live – alternatives to the typical modern old age home, designed and planned to allow us to have agency right up to the end. He discusses ways that communities might be set up to enable seniors to continue living in their own homes. He describes one place where residents had been like the ones at Gummy’s facility – sitting around waiting to die – until a newly-appointed doctor in charge brought in several cats and dogs and 500 caged birds, as well as a forest-worth of living plants – and all those old folk started living again, invigorated by having something to care for. In other places he describes, seniors have freedoms unheard of in conventional old age homes – specifically, the freedom to make poor choices that might shorten their lives but that make life sweeter (like pie and ice cream for diabetics).
Then, moving on to the subject of care for the terminally ill, he offers an approach free from medical “cures”. The priority, he says – and this is precisely the priority I have for my dogs, so why not also for my two-legged loved ones? – is quality, not quantity of life. Rather than asking, “Do you want this treatment or that treatment or simply to die?” he says we should ask, “What constitutes a good life for you, from the perspective of what you’re capable of right now?” That determined, the question becomes simply how to accomplish that goal. It may be freedom from pain. It may be the ability to enjoy a dish of chocolate ice cream. It may be a clear head and time to spend with the people one loves.
Looked at from that perspective, it will almost certainly not be months of pain and nausea chasing an elusive, all-too-temporary “cure”.
Since reading his book I find myself looking at my own life from a different perspective. I’m still at the early stage of my slide into decrepitude, and as far as I know I’m not terminal – except in the sense that we all are. But I am creakily, crankily aware that three-score-plus years of poor choices about diet and exercise are demanding a toll. I make plans but not promises; I write to do lists, but I forgive myself if I can’t fulfil (or, some days, even start) them. I’m increasingly conscious of the need to cross things off my bucket list – not because I’ve achieved them, but because I’ve run out of time.
But I still have choices – so many extraordinary choices! I can still make a garden … acquire new skills … save a few more dogs … write stories. I can still pour myself out; I’m not yet reduced to a trickle. I can go to new places and ask questions and find answers. I can read. I can pray. I can love.
It’s not what I thought it would be. But, as it turns out, now that I’m here, it’s enough.