Chronic Insanity
Published June 26th, 2009
In the health-care debate, there are two kinds of people: those who are sick and those who will be sick. The problem is, most Americans, especially young ones, refuse to acknowledge their membership in the second category. Our so-called health-care “system” promotes and exploits this peculiar American illusion: that the body is invulnerable and the spirit autonomous; that human need is a temporary aberration.
I have recently been walloped by human need, its depth and constancy. For the better part of the past three months I have been caring for my mother. At nearly 90, Mom was taking care of her own business. Retired after 45 years’ work in nonprofit organizations, she managed her finances, walked two miles a day, read two books a week, volunteered at a public garden, handed out leaflets for peace, practiced the piano and pursued a social life that would exhaust Paris Hilton.
Then, at about 4 a.m. one Sunday in March, three blood clots traveled from her heart to her brain. The stroke knocked out her short-term memory, most of her sight and her ability to reason reliably. Since then, my mother has been unable to read or play the piano. She cannot remember her grandson’s name, make a piece of toast or leave the house alone. She needs full-time care.
The hour my mother went into the ER, my life was virtually supplanted by hers: first her hospitalization and rehab, then the oversight of her care, her money and her household, which has meant piecing together the details of a now only vaguely remembered existence, from medication schedules to email password. And all the while, I have carried my mother’s immense grief and distress at the radical transformation of her self.
In spite of the fact that she has had home health aides with her from the day she returned home, I have been almost unable to work; I can barely think. My partner, Paul, has assumed a huge part of the burden. But it is still not enough. If I am not to go broke or crazy, we will have to pay someone else to assume my mother’s care.
If she lives a few years, such professional assistance will devour every penny of her savings. After that, she will go on Medicaid, at which point the quality of her care may precipitously decline. Health insurance does not pay for chronic care.
Our family’s situation is ordinary. In 2004 there were an estimated 44 million family caregivers in the U.S. Some families supplement this work with paid home aides. The dedication, competence and kindness of many of these workers belie the paltriness of their pay: rarely more than $10 an hour, often for 24-hour shifts. But others are untrained and uninterested, and their wages are beyond the means of most families anyway. Those who can afford paid care are not off the hook. The fragile systems regularly break down, and with each crisis everyone’s health, sanity and money take a hit.
Disability rights activists call us sighted, hearing, mobile bipeds the “currently able.” What they know is that autonomy, the cornerstone of Western ethics and personhood, is a myth. Sooner or later we will all be in some way halt, in some way blind, and neither science nor the grace of God will prevent us from going where the currently disabled already are. In the meantime, we already are what they are: dependent, from our first breaths to our last.
Paradoxically, our dependence may be more acute in this age of Web-shopping, tax-resisting, single-person-householding consumer-citizenship than it was when we hunted in packs and dragged home a bison for the communal feast. Back then you didn’t survive long without the help of others. Today, you need the help of others because you survive so long. Modern medicine has all but defeated premature death from acute illness; we stay healthy for more years. The irony of this accomplishment is that we will be sicker later, and for longer. We can count on surviving seven, eight, even nine decades, but an American who reached the age of 65 in 1996 can also expect an average of more than five years of “dysfunction,” probably from a chronic illness, before she dies. “Much of the peculiar pathos of aging in American culture,” notes historian Thomas R. Cole in The Journey of Life: A Cultural History of Aging in America, “derives from the denial of this new fate.”
The new fate is the same as the old one. As University of Missouri sociologist Jaber Gubrium once told me, “Failure is a natural part of life.” So if we fail — when we fail — who is responsible for picking us up? Karen Buhler-Wilkerson, professor emeritus at the University of Pennsylvania School of Nursing and a historian of home care, says there’s a loose consensus in America that the family should do it, with a little help from the state. But that’s as far as we’ve gotten after a century of irresolution. Charity and the profit motive, individualism and personal desperation, left and right continue to duke it out. What never happens is the establishment of an adequately funded, integrated system of care similar to those in almost every other developed country.
“In the absence of the requisite public will,” writes Buhler-Wilkerson, “our stance appears to be one of waiting for a complete breakdown of long-term care before definitive action will be taken in response to the needs of the present and growing aging and chronically ill population.”
Policymakers and advocates have recently taken a step. They’ve realized that home care is cheaper than institutionalization. That’s why many states, including Vermont, now allow Medicare payments to family members who care for the ill or aged at home. But those payments are few and small, and anyway the savings are based on a false economy. Yearly, family caregivers provide an estimated $257 billion in unpaid care.
Who are those family caregivers? Need you ask?
They’re the same people who provide free childcare and housework: wives, daughters, grandmothers, sisters, nieces and female domestic partners. Paul is an exception among men. Indeed, everywhere in the world, almost to a person, caregivers are female.
Americans imagine we will never become old, sick or dependent. But just in case we do, Mommy will kiss the boo-boo. These two fantasies strike me as related. Even as we figure ourselves self-made and self-reliant, we are, as social beings, infantile. Nowhere are we more attached to the delusion of our perpetual youth than where our bodies are concerned. Cosmetic surgery, Viagra, stem cells: These will keep us vital forever.
Small children do not understand death; they believe Grandma or the pet hamster is only sleeping. Adolescents think they’re unbreakable; they’ll take any drug or any dare. But growing old means recognizing your frailties. Growing up means facing your death.
There are many political, economic and bureaucratic obstacles to universal health care in the U.S. — powerful insurance lobbies, fee-for-service medicine, budget-cutting mania. But these are trifles compared to the real obstacle: our dumb faith in ourselves.
Americans are showing signs of readiness for health-care reform. A New York Times/CBS poll last week found overwhelming support for a public insurance option, as well as trust in the government to do it right. Two-thirds of respondents said covering everyone is more important than controlling costs. Will we actually do it? And will we as a nation ever assume responsibility for people like my mother, whose troubles are neither curable nor fatal? Desperation may finally get us there.
But as long as we cannot give up the fiction that we are invulnerable and autonomous, we will fail to provide ourselves collective security. As long as we deny our mortality, we will condemn ourselves to die alone.
This column originally appeared in Seven Days.
Judith,
Once again, your article is right on target, but I’m so sorry to learn the reason why you’re focusing on this topic. All of us have or will be down this road.
Carol (I can’t bear to say best wishes, it’s so inadequate)
Comment by carol groneman — June 26, 2009 @ 8:26 am
Dear Judith,
Thank you so much for another insightful, intelligent article. I am sorry for your situation, and I can only say that I sympatize, having been in your situation myself.
In general, I follow your debate on American health care with great interest. I live in Sweden, where we already have a national health care system, but since this system is under constant revision and pressure, nothing is to be taken for granted.
My mother was diagnosed with Leuchemia 16 years ago, and died a year and a half later. She had excellent care in the hospital, where I was encouraged to stay with her for long periods of time – I really felt I made a difference. At that time I was newly divorced, and my children were not yet born. She did pay a small fee for certain services, but all in all I think it came to a couple of hundred dollars altogether, for months of care in the hospital during a year and a half. (If she hadn’t been able to afford it, she would still have received the same care.)
My mother had long periods where she was almost back to her strong, healthy self, and we did manage to travel and make the most of our time together (which we knew were limited, since she wasn’t cured completely). I am grateful for this. I am also grateful to the hospital staff who were wonderful to us. My mother had her own room, and I was encouraged to stay with her. We were also served a nice meal three times a day. (This may not be the case in all Swedish hospitals today, unfortunately.)
Obviously it is enormously sad for me and my family that my mother did not live to get to know her grandchildren. Also, if I had been a mother at the time I wouldn’t have been able to spend so much time with her. I received sick benefit for the time I spent with my mother in the hospital – her doctors encouraged this and gave me the necessary verifications. So I did get some financial support from the state – although not without trouble.
I am not sure this would have been possible today, but I do hope so. We still have a good healthcare system – I hope it will continue that way.
There are a lot of parallells between Sweden and the US, culturally and otherwise. Another one is the way we live our lives – seemingly independent, healthy and happy. Anything else is an abberation, right? But it is a weird state of things, in many ways. We are sometimes too isolated from basic human needs, I think. Old people in Sweden are sometimes very lonely, for example.
I only disagree with you on one account in your article. Small children do understand death, sometimes much better than adults. I have experienced this with my own daughters, who have spent a lot of time missing their grandparents (they have only met their paternal grandmother, when she was ill), they have lost relatives and been to funerals. Children are not frightened of serious issues in the same ways as adults. Some adults seem offended when confronted with illness and death – even after a very long life.
We do need to find a more compassionate way to live together. We could start with acknowledging the fact that we need each other. Also, we need to value professional caretakers much, much more.
Thank you Judith, and take care.
Best Wishes,
Erika Lunding
Comment by Erika Lunding — June 27, 2009 @ 4:52 am
I’m sorry to hear about your problems, and I’m glad that I don’t live in America, but in Denmark where the government supports the elder people, and which is funded by the tax payers and not the individual alone.
Comment by Steffen Lund — August 3, 2009 @ 10:05 pm
Judith, I am so sorry to hear of your Mom’s plight. It is truly so sad when a Nation as prosperous as ours does not take care of it’s elderly. And as smart as we are …their seems to be no answer or courage. My DW had a Grandmother that she thought the world of who had a stroke and was placed in a facility. I can’t count the times she came home in tears after a visit. On the other hand my “very dear GF” had one “special wish” as he got older. He didn’t want to go to a facility…no matter what. He passed peacefully in his sleep, in his favorite chair while watching a program he loved(Lonesome Dove)that we would discuss after each episode the following day. Given a choice I’ll take the latter…but sadly I have no choice. Wishing you well…Jestjack
Comment by jestjack — August 27, 2009 @ 10:49 am
I did not know about your Mom. I had been on a board of a local nursing home and have done many evaluations of our senior men and women. Many do not realize, that, with aging, there can be a helplessness. And this helplessness is often shared by the family. I’ve been told by many older people “I feel alone and not worth much.” You know well that as a parent is dying so to their children.
Comment by Joe McCarthy — January 2, 2010 @ 10:20 am
I have home caregivers demonstrate that they can give excellent and loving care for a loved one. Most commonly, this is a father or a mother, and sometimes both However, they need additional finances and some respite. The powers that be forget this is the best and cheapest kind of care. I’ve been in many facilities for our senior people and could have much to say about what I have seen. Hope I’ll always be at home.
Joe
Comment by Joe McCarthy — January 21, 2010 @ 4:04 pm
Thanks for your insights, Judith.
Comment by Amanda — March 29, 2010 @ 12:10 pm