Two guys in one hospice room

Hal is down to about 80 pounds, blind, bedridden, unable to feed himself, incontinent for the past six years and in a VA hospice. There he receives good care and dozens of daily meds that keep him alive. At the request of a friend of his, I visited him recently to talk about his options. They are, essentially, keep doing what he’s doing – or let what’s being done to him keep on being done – for as long as his remaining cells agree, or stop eating, drinking and accepting all medications but pain control and shorten that period ahead. As it turns out, Hal, a long-time supporter of aid-in-dying, chooses the former; that is surely his right.

As I was leaving, though, the man in the other bed asked me to talk with him. “I heard everything you said,” he told me. “I’m dying. It’s taking too long. Can you help me?”

Well, no, I can’t help him much at all. And that makes me sad for us both, as he is clearly in need of help: pain control, advocacy, methadone, comfort care and social contact. The latter two he is getting to the extent possible; round-the-clock methadone, which is what I think he really wants, is not exactly mandated by the VA. But somebody should be listening to him a little more carefully.

Joe, I’ll call him, since he didn’t ask me to share his story, is 66 but could pass for older. He has cancer in his liver and elsewhere, he says. “It’s pretty much all over, but I think it started in the liver. I’m in a lot of pain. I get a shot of methadone every night at six and that helps for about three hours; after that I just try to hold out until the next shot. I don’t want any more of this.”

Joe reached over, opened a drawer to the little table beside his bed and pulled out several folders. He has an appointment for dental work in three weeks, and is scheduled to begin chemotherapy. “How can they make me do all this?” he said. “I don’t want any dental work, and I don’t want chemo. I just want out of the pain.”

At some point, many of us just want out of the pain, and welcome death as the inevitable way out. Others of us, luckier or sometimes wiser, welcome death because its time has come and that’s what we mortals do, we die. Might not always be the worst thing that happens.

The hospice where Hal and Joe are is part of a huge VA medical center at which excellent care is provided. Since I know nothing of Joe’s history, and since everything I know about the medical center is positive, I can only assume they are doing the best they can for him. Perhaps they see him getting better, going home – although he told me he has no home, no family, no close friends – or to somewhere outside the center’s campus. At a sprawling center staffed with skilled, caring people whose aim is to heal and to cure, there may be few people available to talk to Joe about dying, or to help him gently do so.

A lot of progress has been made toward end-of-life care, but the ability to face death with honesty and compassion eludes us. And until we find a way to do so people like Joe will be around to break the hearts of those who meet them.

Dementia, the last taboo

Dementia, the elephant in the conversational room, has begun to lift its trunk and trumpet around. Ask anyone over 60, or almost anyone whose parents are over 60, to list the Big Fears, and dementia will be up there at the top. But precisely because it defies solution, can’t be predicted and won’t go away, it has long been among the great taboos for meaningful public discourse.

Perhaps that’s beginning to change. There are a few answers emerging as alternatives to warehousing, or being warehoused, in an institution somewhere when Alzheimer’s or other dementia takes over. Some of them make very good sense. All of them require consideration with a cold, clear eye while still sane and healthy, and that’s when the elephant in the room needs to be shoved aside so conversation can happen.

At a recent meeting of advocates for improved care and expanded choice at the end of life, a small group gathered to discuss raising awareness for Compassion & Choices, one of the leading organizations addressing these issues today. The talk quickly turned to the subject of advance directives – everyone in the room had such documents in place – and from there to dementia.

“I suppose if my Alzheimer’s gets really bad I won’t care any more,” said one, “but I absolutely hate the idea that the images my friends and family will be left with won’t be images of who I am at all.” Said another, “To me, it’s the money. I just don’t want every last penny I want to leave my family going instead to some nursing home.” And a third added, “My husband has promised to slip me poison.”

Actually, there may be better solutions, even if they remain only partial solutions. Compassion & Choices now offers a “Dementia Provision” document that may be attached to one’s advance directives, stipulating that in the event he or she winds up with dementia the signer declines all measures that would prolong life. Author/ethicist Stanley Terman is taking this concept farther (devising stronger, more explicit instructions) for those wanting to avoid prolonged life after dementia strikes. While I don’t always agree fully with Dr. Terman (except for his inclusion of a story of mine in The Best Way to Say Goodbye; I don’t get royalties) I applaud his dogged search for answers, partial or absolute, to a problem that defies easy solution. The conversation is also being aided and abetted by some good new books, including John West’s The Last Goodnights, and everything starts with the conversation.

If the conversation continues, the elephant may leave the room.

The Joys of Oxalis

Pulling oxalis is one of life’s little abundances. Not because of anything to do with gardening, or weeding, or environmental enhancement. If one looks closely at the issue, oxalis-pulling is an exercise in existential self-care.

I know this because I pull oxalis on a continuing basis. As therapy, you understand, not as enterprise. Weeding, trimming, yard-care all smack of work. An hour or so yanking grass from between pavings and what have you got? Neatness and bursitis. Gardening, if your thumb is the color of mine, inevitably spells sudden death. Pull oxalis, though, and you are in tune with Nature, awash in golden blooms and the smell of childhood. Oxalis hardly even pulls back. It just piles up in luminous green and yellow piles, yankable by the handful, occasionally adding snaky white roots to the spidery threads that connect it to itself (and to every other living plant and flower in your garden.)

Furthermore, no matter how assiduously you apply yourself to oxalis-removal, there will always be more oxalis available when next you need relief.
I know this because I am, you could say, at one with oxalis. Partly because we live next door to the mother lode of oxalis, our neighbors not having ventured into their back yard in recent years and the lode being well enough established that it will be the next millennium before anything else grows there, and partly because oxalis and I understand each other. I understand the benefits of battle, it knows it will always win.

Underneath the dense tangles of oxalis that present themselves everywhere in our yard it is possible to find things like verbena and geraniums and pretty ground cover of yore. When this happens, it is like establishing a tiny bit of order in the world, and Lord knows we need a little order. It is also a temporary victory, something else rare and lovely. In the meantime, the green-and-gold pile grows, everything smells warm and earthy, the compost-collection people are kept busy and the upper body is exercised. Also in the meantime, one can meditate on the meaning of the universe. At the end of the day, one can sit back and admire one’s progress, secure in the knowledge that tomorrow the oxalis will be back.

The relationship between issues most often addressed in this space and the pulling of oxalis may not be immediately evident but I think it all fits. I offer these thoughts into cyberspace because the stock market and our IRAs are tanking, world peace seems unlikely and the globe is warming. With so many uncertainties surrounding us, it is a comfort to know there will always be oxalis.


The sad thing about John Updike’s being dead, other than the loss in general, is the loss in literary size. Like my #1 literary hero Reynolds Price, Updike could do it all: novels, essays, short stories, poetry, critiques, nonfiction, it was enough to make you want to hang up your computer forever. But the other thing, Updike being almost exactly my own age, is the timing. When I read his obituary I was just back from a trip east to give a eulogy for my greatly beloved sister Mimi (Updike was, in fact, exactly in between Mimi’s age and mine) and working on a eulogy for my also beloved old, old friend, JoAnn. Those being two eulogies too many for one young year.

Mimi had grown frail with a multiplicity of complaints in recent years, and did not have a lot of enthusiasm for a long decline. So when a cluster of strokes and heart attacks lifted her rather swiftly heavenward it was probably fine with her, if not good for the rest of us. JoAnn, though, was six years younger than Updike, a hearty, joyous soul who had survived breast cancer decades ago and a recurrence somewhat later. One night she sat down on the edge of her bed, readying for a night’s sleep. Some tiny something, a piece of plaque somewhere, broke off into her blood stream and the next moment she was dead. Most of us would sign up for this swift, painless exit, but not right now please.

Being very kind to one another has taken on a new urgency. Planes crash, fires and floods and earthquakes happen, people who are supposed to be here suddenly aren’t. Being kind, spreading a little ray of joy when you find one, noticing the smell of approaching rain – so the IRA has tanked and the stimulus package can’t be fathomed; still, maybe it’s worth paying attention to the smell of almost-rain.

A few blocks up Arguello Boulevard from our house, in the storied space that is now the Presidio National Park, sculptor Andy Goldsworthy recently created a breathtakingly lovely new work titled Spire. Made of trees felled in the effort to return the Presidio to its natural state, Spire is surrounded by newly planted young trees. As those trees grow, they will eventually cause Spire to disappear, blending back into the forest. It’s all a part of this mystical effort to keep the planet spinning as intended: forests come and go, the universe continues. Which seems quite a comfortable arrangement.

John Updike could have worked this into a darned good story.

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