Recently, I listened with interest to an interview on NPR that posed the question of who needs long-term-care (LTC) insurance. Only one percent of Americans own LTC insurance which defrays the cost of custodial care.
Because of recent experiences I’ve had with my mother, I’ve have been thinking about how I’d like to spend the rest of my life when or if (I admit to fits of denial) the time comes that I’m not in control of the ability to have a blissful and productive life. She was recently diagnosed with a malignant brain tumor. After undergoing extensive treatment, we found that she was unable to independently attend to her activities of daily living, and because of a concern for her safety, required around the clock supervision.
I learned that the cost to hire a home-health aide for custodial care was $500 a day, and that only Medicaid insurance covers the cost for custodial care. My mother is a retired teacher with a modest monthly income, which while was overwhelmingly inadequate to pay for care, made her ineligible for Medicaid. In the midst of a tragedy, we were faced with worrying about what would be the best solution to meet my mother’s needs in financial terms rather than considering what my mother’s wishes would be. After a re-hospitalization, it became clear that my mother would best be served in a nursing home because of the constellation of care that she required. The first bill was $16K for the first two weeks, and the business office assisted with the Medicaid application that she had now become eligible for given the cost of care. I am a physician with a reasonable income, but the kind of custodial care that is needed is not affordable.
For complicated and not so complicated reasons we choose not to think about an eventuality that will come to all of us. We can’t know how we will die, but I’m betting that many of us hope to die painlessly in our sleep. For most physicians, as Dr. Ken Murray outlined in a recent Wall Street Journal article, we are aware of the limits of modern medicine, and want to make sure that when the time comes, that no heroic measures are taken. We have seen too much, and have had too many conversations with our colleagues about the futility of many of these aggressive end-of-life measures.
How many of us have thought about how we’d like to spend our lives where we are not in control? Do we want to make our children responsible? Do we want to utilize our retirement incomes that we’ve spent years working for on nursing home or other custodial care or would we like to create wealth or opportunities for our families or cherished interests? Where will we live? Will we have the kind of home that would allow others to move in if we’d like? Do we see ourselves in nursing homes or in assisted living?
For me, this has become a watershed moment. We spend time planning our weddings, our anniversaries, our retirement parties, and celebrating our milestones, but not enough time contemplating the eventuality that comes to either ourselves or our parents. For those of you who haven’t begun the process, I urge you to start the conversation with family and perhaps an elder lawyer.
Maria Maldonado is Program Director, Internal Medicine Residency Program and Associate Chair of Medicine, Stamford Hospital. She can be reached on Twitter @MMaldonadoMD.
