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A Visa for the Dying: Travels to Another Country
Janice Lynch Schuster | November 21, 2011
Seventeen years ago this month, my grandmother was dying of kidney cancer; given 2 days to 8 weeks to live, she made it 8 weeks to the day. During those weeks, even as she suffered the pain and indignity of her illness, she was very much among the living. She played with my children, did crossword puzzles, went through old papers, sorted out her knickknacks, admired the changing colors of the trees. Even as she was saying goodbye to us, she was living her life as best she could.
A decade ago, a dear friend died of pancreatic cancer. During the few months remaining to her, she and I got together for lunch as we always did; she worked on writing assignments for the newsletter I published, held a Christmas gathering, and finished her master's degree.
And just last year, a few days before her death, the mother of a dear friend was swimming laps in her community pool. In what proved to be the last months of his life, Steve Jobs got up, put on his black turtleneck and jeans, and journeyed to work, where, apparently, he tried to find ways to reinvent television. In the end, they say, he was troubled by the poor design of his oxygen mask, and kept insisting on trying others. People remain themselves until the very end.
The point of remembering these sadnesses is to note what they all have in common: People who are dying have much living to do, whether it is measured out in days or weeks or months, each person wants to be counted among the living until the very last moment. It is no surprise-we all share passions, interests, loves, and a basic human desire to survive.'
And the demarcation lines between the living and the dying might as well be drawn in pencil, so our doctors can erase and redraw them because their efforts at prognostication often miss the mark. My friend, geriatrician and hospice physician Joanne Lynn, refers to all of us as the 'temporarily immortal', and notes that the distinction between the living and the dying is as arbitrary and subjective as the one we make between people who are tall or short: Some quite clearly are on the edges of height, but most of us are somewhere in the middle.'
Not wanting to categorize people as living or dying is not the same as not wanting to talk about the end of life and death and dying. Life, after all, is 100% fatal, and it's a journey each of us will make. In our culture, we are quite averse to these conversations, worried that somehow they will go from just words to realities-that if we talk about dying, we might somehow find ourselves there.
The truth is that it's important to talk about dying and what it means to each of us. It is especially critical that we address these issues now, as 78 million Boomers will, in 30 years or so, be knocking on heaven's door. Thirty years is a flash in time.
Unlike previous generations, Boomers are likely to live for many years with what were once immediately or quickly lethal conditions: cancer, cardiovascular disease, HIV/AIDS, Alzheimer's. Indeed, most will live for three or four years with a disease that eventually kills them. Over the course of that time, they will go from being robust, independent adults, to needing some degree of hands-on, round-the-clock, intense care and medical attention. It's not clear who will provide that care or how: Because Boomers had so few children, they do not have a pool of family caregivers upon whom to rely. And their children did not save or earn enough to enable them to leave work for any length of time to serve as caregivers. The trouble is compounded by the insufficient numbers of geriatricians and other clinicians expert in meeting the needs of the elderly.
Magical thinking or believing, as so many of us do, that we will live forever will not save us from our future. Despite the multibillion dollar industry devoted to anti-aging and healthy living, most of us -if we are lucky'will grow old, get sick, and die. (Some few of us, unlucky ones, will perish quickly, due to accidents or injuries, but those are relatively rare.) Along the way, we will need to have conversations and opportunities in which we can talk about our lives and their meaning, our hopes and our aspirations. We need others to understand that as much as we are engaged in the business of our lives, we are concerned about what the end means, and anxious to understand how it will be. We will need each other to get through, to nurture and love and comfort one another.
It is a hard business.' It's hard to do. I've written about these issues for 15 years, and yet when my own father was gravely ill with a cancer (one that he ultimately survived), I could not bring myself to ask the questions I knew I ought to be asking, or to raise the conversations that would have been so important. Instead, I could only think about getting him through each difficult day. Counting him among 'the dying', even when what he seemed to be, ran counter to what I wanted-him, living.
None of us wants a passport stamped for the country of the dying, but many of us will live there for a long time on a visa. While we can and while we are able, we should tell stories of what we find there, what's worth doing and what's worth passing by, where the five-star moments are to be had, and where the service is a little slow.
This post originally appeared on the Disruptive Women blog.
More Blog Posts by Janice Lynch Schuster
Janice Lynch Schuster is a senior writer for Altarum Institute, a nonprofit health systems research and consulting firm where she works on the new Center for Elder Care and Advanced Illness, an organization dedicated to “making it safe to grow old” through a combination of research, advocacy, and demonstration. She blogs weekly for the Center’s website, www.medicaring.org, covering issues including end-of-life care, caregiving, aging, maternal and child health, behavioral health, and more. This piece was originally published in the Altarum Health Policy Forum. Follow Altarum on Twitter @Altarum.
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