A System From Hell
Other than the steady decline to be expected with my husband's Parkinson's disease, there is little change to report in our situation since I wrote about our family's health care challenges in The Nation last spring. Costs continue to mount as his independence ebbs. Caretaking is my life. But what has not changed for us is not nearly as important as what has changed in the healthcare debate. A year ago, amid post-election euphoria, the healthcare debate seemed to offer real hope. A public option that would inject competition into the healthcare market and theoretically bring the cost of healthcare under some semblance of control seemed to be the most minimal reform Washington could conceivably offer a nation fed up with a system that was failing us. Today, a considerably diluted public option is flitting around the edges of the Senate debate as an extravagant idea that might, if enough deals can be struck, sneak through. Meanwhile, a group of House Democrats sacrificed women's health by inserting restrictions on abortion broader than even the most ambitious Republicans could have imagined a year ago, and Senate Democrats may pursue the same strategy. The article below, which I wrote last April, is as relevant as ever.
It was a crisp and brilliant autumn day last October when the medical and financial crises with which my family had successfully, if barely, coped for seven years became a catastrophe.
My husband had been diagnosed with Parkinson's disease in 2002, a year after our daughter was paralyzed in a horse-riding accident. His balance had deteriorated until he fell two or three times at home last summer. In the face of his diminishing physical condition, a single fall could result in disastrous injury. We scheduled an appointment with his neurologist in Washington.
We pulled up to the main entrance of the hospital after the two-hour drive from our home near Gettysburg, Pennsylvania. My husband opened his door, grabbed the roof of the car and began to pull himself out as I walked around to help him. I was too late. In an instant--time slowed enough for me to see the danger but raced ahead too fast for me to reach him--he lost his grip and fell to the concrete, shattering his hip, breaking his femur and causing internal bleeding that kept him in the hospital for months.
My husband is a retired college professor, and what the teaching profession lacks in salary it often makes up for with generous benefits. His health insurance would cover most of the emergency costs related to the fall--the surgeries, the hospitalization, the drugs. But in the astronomical sums the cost of medical care often entails, "most" is not a reassuring word. Months later, as his discharge from the hospital drew near, I sat in my living room looking at the bills piling up on the table. The co-pays, uncovered care and other costs had already reached $8,000, and we had virtually nothing left.
Seven years of caring for my husband and our daughter, who had no insurance at the time of her accident, had all but exhausted our savings. As my husband's condition deteriorated, I was caught in a trap. We needed my income, but the kind of political consulting work that was my forte was incompatible with the demands of caring for him. It was simply not possible for me to be available for him 24/7 and simultaneously to work overtime, traveling for days or weeks on the campaign trail, to bring in the income that would keep us afloat.
The fraying financial thread by which we were already hanging was now certain to snap. When I heard the awful sound of my husband's body hitting the concrete outside the hospital, I knew the modicum of independence to which he had clung for so long was gone. He was discharged into an assisted-living facility, where most of the cost was excluded from both his private long-term-care insurance and Medicare. At $9,000 a month, the bills accumulated quickly.
Recently, we decided to bring him home, although the doctors would have preferred that he stay at a facility with full-time supervision. But this was a mathematical decision, not a medical one: we do not have the money it costs to keep him there. I had already stopped working, to care for him; our savings are nearly depleted; and his pension is not nearly large enough to pay the bills.
Today he needs nearly round-the-clock professional help at home--less than the cost of the assisted-living facility but still far more than we have. I have spent recent weeks looking for a job that can add at least enough to my husband's pension and our Social Security benefits to cover the cost of his care. It is a dilemma familiar to so many women--finding work that can pay for care but also leave time for providing it.
The time is drawing near when, job or no job, the expenses will simply be more than we have. I am coming full circle, back to where so many women's lives begin and end--and where my career as an activist began: jobless, unsure how to pay the next month's bills, caring for a family that depends on me for survival--and utterly and deeply determined that something about our country must fundamentally change.
That was in 1969. My first husband had abruptly left my three young girls and me, stranding us without financial support. Our family was in crisis, and when I found out a few weeks later that I was pregnant too, I knew it was impossible to give a new baby--whose father had already deserted it--what it deserved while also giving my daughters what they needed. So in 1969 I made the difficult decision to have an abortion. Because state law radically restricted access to the procedure, that decision had humiliating consequences. I was forced to obtain permission both from the man who had abandoned my daughters and me and from an all-male hospital review board. The board's interrogation in a hospital conference room covered subjects like whether I was capable of dressing my children in the mornings and whether I had been satisfying my husband sexually.
That experience sparked a lifetime of activism that eventually took me to the front ranks of the prochoice movement, where I forged deep and lasting friendships with some of the most powerful political figures of the past thirty years.
Not many Republicans were among them. But there ought to have been more--because in a distant era fast receding in time, theirs was the party of moderation and individual rights, and also because, ironically enough, I have led precisely the life Republicans claim to value. I started as a single welfare mother, then worked my way through college en route to a successful career. My second husband and I have sustained a traditional and loving marriage for thirty-five years. He purchased quality health insurance, including long-term-care insurance, so he would not be a financial burden to others. He enjoyed a long and steady career at an institution that would pay healthcare costs and a modest pension for life. Between his salary and mine, we achieved a reasonable degree of economic comfort--never wealthy but independent, self-sufficient, responsible.
Then came our daughter's accident.