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A bedside view of Medicare.

I spent the last two months watching my father die. This is the hardest thing I have ever done. Like millions of Americans, my brother and I were pulled between our jobs, our families, and a desperately needy parent, with our utmost priority being our father's comfort and, secondly, family finances. Simply put, we could not have gotten through this without Medicare.

For those of us of all ages going through this struggle, the recent "debate" about proposed cuts in Medicare seems surreal. While we stroked foreheads, rubbed dry lips with ice chips, emptied bedside commodes, felt for pulses, and cried, we heard a discussion about caring for the elderly that was bloodless, abstracted, and idiotic.

I don't doubt that in short order this system is going to be under real strain, and that changes must occur. But it's as if politicians and pundits alike are viewing the situation from the vantage point of a dirigible instead of from the edge of a bed.

There was lots of vague talk of budgetary "bloat," but precious little talk about what, exactly, would or should be cut. Only Jack Germond, rousing himself from his usually somnolent state on The McLaughlin Group, countered Fred Barnes's assertion that Medicare would be "rescued" by the Republicans. Germond asked questions rarely heard elsewhere. Will the deductible that the elderly pay go up? Will there be a cut in the number of days of coverage? Win there be higher copayments? He got no response.

My father wanted to die at home instead of in a hospital or nursing home, and this was our choice, too. For two-and-a-half months he needed someone in the house, 'round-the-clock. Medicare provided a nurse's aide twenty hours a week. My brother and I, who both work full time and have small children, got coverage for the equivalent of two-and-a-half work days, and no nights. Wherever the "bloat" is, it ain't here. The other four-and-a-half days, and all the nights, had to be covered by my brother and me, and by private nurse's aides, who cost $150 a day in New Jersey.

Medicare's policy seems predicated on the notion that there is already an in-home provider - e.g., a wife - to make up the difference. When there isn't, the children better have time, money, or both. And they had better live nearby or be ready to do a lot of commuting, and they had better have understanding employers. Such mundane details - the real stuff of caring for the sick and dying - never make it into pundits' pontifications about "managed care" and "choice."

Despite the fact that in-home care has been heralded as less expensive and more desirable than hospitalization, the House Budget Committee has targeted home health care for cuts, arguing for higher patient co-payments to "discourage over-utilization." Over the past decade, people have been shoved out of the hospital as fast as possible to save money. And like my father, most people hate hospitals and insist on dying at home if they can. This has led, not surprisingly, to the spiraling growth in home care.

But according to Republican logic, if government spending in a particular area has grown, the program must be reined in, even if it encourages "choice" and saves money. Within this punitive mindset, even desirable trends are labeled failures.

Besides the already meager time allotment for home care, the nurse's aides themselves are poorly paid and are not provided health insurance as a job benefit. This attack on home health care will fall especially heavily on women, who make up the majority of home-aid workers and Medicare recipients and who, as daughters, wives, and daughters-in-law, are too often expected to assume the lion's share of in-home nursing care.

I drove back and forth between Massachusetts and New Jersey to see my father every week, and when I was in an especially masochistic mood, I would listen to Rush Limbaugh's version of Medicare "reform." He fulminated over accusations that the Republicans were heartless because they were cutting Medicare by $250 billion. Why, the Republicans were doing no such thing: they were actually pushing for increases in Medicare spending, according to Rush, but just smaller ones than those profligate Democrats.

Now, technically, this is true - spending will increase. But what listeners didn't hear was an acknowledgment that this slower rate of growth won't quite keep up with inflation and the growing number of recipients, so those over sixty-five who get sick will either pay more, get less, or both.

To make themselves sound compassionate, the Republicans and their media mouthpieces have staged a rhetorical generational war, pitting the likes of my father against his children and grandchildren. As Time put it in its celebratory cover story about cutting the budget, senior citizens will indeed be the losers in the revamping of the budget. But the euphoric essay, entitled "Beyond the Pain, a Revival of the American Dream," advised, "they could take heart from realizing that they were helping their children and their children's children." Here we get a cynical - and false - dichotomy between present expenditures and future debt.

Becoming a burden to their children - not some future, abstract generation, but their own flesh and blood - turns out to be one of the top concerns of dying parents. My father, in his final weeks, became deeply worried about whether he had enough money to pay for everything. The possibility that he would leave my brother and me in debt was agonizing to him. He wasn't really in the mood to think about the more distant future.

All this sanctimonious blather about future generations minimizes our parents' deeply felt concerns, and disguises the fact that with Republican cuts, debt from illness will be privatized, and will hit middle-and low-income people the hardest.

The real debate about Medicare - the one that exposes neocon platitudes - has yet to occur. And given the conservative stranglehold over the TV and radio talk shows, it will probably never happen. Those of us who are not rich will just find ourselves increasingly constrained in our efforts to help loved ones - and ourselves, for that matter - die with dignity. At least this my father was spared.

Susan Douglas teaches at Hampshire College. Her column appears in this space every month.
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Author:Douglas, Susan
Publication:The Progressive
Date:Jul 1, 1995
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