We spent Thanksgiving with my cousin and her husband, who is moving into the advanced stages of Alzheimer’s. Over three days, I watched in awe as she patiently and lovingly cared for her partner of 23 years even though most of the time he didn’t recognize where he was or whom he was with.
Over the past few years as his disease has advanced, my cousin has worked full-time and cared for him at home. She’s done this with the help of a group of outside caregivers, but at great cost. Right now their hours are 8:00 to 5:30 pm everyday, which costs her $800 per week, after taxes.
Fortunately (if you can call any part of this story fortunate), because he is fifteen years older and had already retired, his pension covers most of the costs. But she must work to pay for everything else. No one knows how long this situation could continue and she wants to keep him at home as long as possible. Although he is severely impaired cognitively, he’s in great health physically. She must earn a living, plus work reenergizes her. It gives her the deep reserve of patience and understanding that caring for him requires.
As the debate regarding health care reform rages on, and state budget crises make headlines, I often think about my cousin and the millions of other caregivers who currently or will care for an adult family member. Why? Because the outcome of these challenges will profoundly affect access to the already minimal level of affordable elder care support that exists. No one seems to be talking about it, and we need to.
Over the years, I’ve blogged about my personal, eye-opening experiences with elder care, as well as the realities of others. I come back to the same questions I originally asked in a post I wrote in July, 2008 about caregiving-gone-very-wrong,“Heartbreaking Reminder—There’s No Elder care:”
Over the years when I’ve brought up the challenges facing parents trying to find child care, more than a few people have commented, “Well, if you can’t care for your kids don’t have them.” Okay, let’s assume for a minute that argument has merit (which I don’t think it does) and explains why child care should be the problem of individual parents rather than the broader community. How does that argument hold for elder care? “Well, if you can’t care for your parents don’t have them?” We don’t have any choice in having parents. We all have them. And increasingly the responsibility to care for an ever-growing number of aging adults is going to fall to all of us. Where are we going to turn for support and help so that we don’t find ourselves making the same misguided, perhaps desperate choices as Theodore Pressman?
Are we as a country and as individuals prepared for the reality of elder care? Do we truly understand how little support is out there, and are we planning accordingly?
I wrote that post just before the worst of the financial crisis began to challenge already strapped state Medicare and Medicaid budgets. At the time, I’d asked an elder care expert where she thought the support would come from and how it would be paid for. She responded without missing a beat, “Medicare. We’ll demand it.” Well, we can demand all we want. But you can’t get blood from a stone. A recent story in The Washington Post reports many states are already cutting the daily reimbursement rates for adult day-care centers. These are critical, relatively affordable supports for individuals who are providing elder care at home but need to work.
What should we be doing? Here are a few thoughts, but I very much welcome the insights of my colleagues who specialize in elder care related issues, so please comment: (Click here for more)