An occasional letter arrives from retired friends in sunny climes who have somehow missed or have been unwilling to register my mother’s condition. They take up in mid-conversation, proposing lunch the next time they are in the area, and recounting details of lives still going on. They continue to regard my mother as a woman who chats, cooks, reads, gossips, and commands attention. Always, suddenly, shatteringly, reading these letters, I see her this way too.
The absurdity of where we are, here on death row, measured not just in our heartache but nationally in hundreds of billions of dollars, can only be missed by the people who have no experience with the true nature and far-flung extremes of quality of life.
A few weeks ago, my sister and I called a meeting with my mother’s doctor. As others had fallen to the wayside, the head of gerontology at St. Luke’s, Dr. Brenda Matti-Orozco, a patient, long-suffering woman had stepped up to this job.
The doctor eased into our meeting with tales of health-care-administration woes, of cuts in Medicaid, of fewer beds in fewer facilities around town—did we know, she asked, that Cabrini had closed? Some people, she said, just upped and left their old relatives in the hospital. So much for the small talk.
“It’s been a year,” I began, groping for what needed to be said: Let’s do this, close it down, end it, wanting to murder the euphemisms as much as my mom. “We’ve seen a series of incremental but marked declines.”
My sister chimed in with some vivid details.
The doctor seemed at first alarmed that we might be trying to foist my mother back on her and the hospital and relieved when we said, frankly, we planned never to return to a hospital. We just wanted to help her go where she’s going. (Was that too much? Was that too specific?)
She does seem, the doctor allowed, to have entered another stage. (These half-life stages of death, such that you never reach it.)
“Perhaps more palliative care. This can ease her suffering, but the side effect can be to depress her functions. But maybe it is time to err on the side of ease.”
Another advance of sorts in our grim descent: Over uncertain weeks or months, her functions will depress even further in this ultimate, excruciating winding down.
“Your mom, like a lot of people, is what we call a dwindler,” said the doctor.
I do not know how death panels ever got such a bad name. Perhaps they should have been called deliverance panels. What I would not do for a fair-minded body to whom I might plead for my mother’s end.
The alternative is nuts: to look forward to paying trillions and to bankrupting the nation as well as our souls as we endure the suffering of our parents and our inability to help them get where they’re going. The single greatest pressure on health care is the disproportionate resources devoted to the elderly, to not just the old, but to the old old, and yet no one says what all old children of old parents know: This is not just wrongheaded but steals the life from everyone involved.
And it seems all the more savage because there is such a simple fix: Give us the right to make provisions for when we want to go. Give families the ability to make a fair case of enough being enough, of the end’s, de facto, having come.
Not long after visiting my insurance man those few weeks ago, I sent an “eyes wide open” e-mail to my children, all in their twenties, saying this was a decision, to buy long-term-care insurance or not, they should be in on: When push came to shove, my care would be their logistical and financial problem; they needed to think about what they wanted me to do and, too, what I wanted them to do. But none of them responded—I suppose it was that kind of e-mail.
Anyway, after due consideration, I decided on my own that I plainly would never want what LTC insurance buys, and, too, that this would be a bad deal. My bet is that, even in America, even as screwed up as our health care is, we baby-boomers watching our parents’ long and agonizing deaths won’t do this to ourselves. We will surely, we must surely, find a better, cheaper, quicker, kinder way out.
Meanwhile, since, like my mother, I can’t count on someone putting a pillow over my head, I’ll be trying to work out the timing and details of a do-it-yourself exit strategy. As should we all.