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 (65.7 million according to recent MetLife study ) 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 eldercare support that exist s. 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:
- Add “elder care” to your career and financial planning radar screen if it’s not there already. And the sooner, the better. Often when I ask parents about how they plan to pay for college and save for retirement they’ll say, “Oh, we’ll have 15 or 20 years after the kids are in school full-time when both of us can work and save.” Really? I rarely, if ever hear, “…assuming we don’t have to care physically and/or financially for our aging parents or another family member.” But that is a very real possibility, and you need to factor future elder care obligations into your planning up front, especially women. Women can seriously jeopardize their future financial security by voluntarily assuming all family elder caregiving responsibilities . That’s why I was glad to read in The Wall Street Journal  about creative ways families are starting to compensate members who are providing care. Families need to talk and plan collectively much sooner than they do.
- Before an elder care crisis hits, learn how to develop, propose and implement a work+life flexibility plan that considers your needs as well as the needs of the business. Don’t wait until you are in crisis mode, and fall into the “all or nothing,” work-or-no work trap. As my cousin’s story illustrates, most likely you will need to work and want to work. And, there are countless, flexible ways to work and manage your life. For many elder care givers, just having the day-to-day flexibility to come in a little later now and then, or to work from a parent’s house periodically makes all of the difference. A step-by-step, easy-to-follow process for creating a mutually-beneficial work+life flex plan that has the greatest likelihood of being approved is in my book, “Work+Life: Finding the Fit That’s Right for You (Riverhead/Penguin Group).
- Be aware of how budget cuts and health care reform is going to affect the adult care resources and reimbursements in your area, especially if you don’t have long-term care insurance. This is definitely something I am trying to follow but I have to admit it’s been difficult to determine within the broader context of reforming health care. Bottom line: From what I can tell (and again I may be wrong, so elder care experts correct me), more care—including end of life, palliative care—is being moved out of nursing homes and hospitals and into the home . What that means in terms of reimbursements for home-based caregivers, I can’t tell, but it does mean that more of the coordination of care and most likely the expense of care will fall on families.
I applaud all of the wonderful adult caregivers like my cousin. As I watched her at Thanksgiving, I was reminded again that more and more of us will find ourselves in this role as baby boomers age over the next decade. We need to recognize that fact. We need to be educated. And we need to be much better prepared than we are--mentally, professionally and financially. What do you think? Is future adult care on your radar screen? If it is, how are you preparing? If it’s not, why?
“Elder care, An Inevitable Work/Life Issues,”  (12/3/07) My guest blog for Marci Alboher’s New York Times, Shifting Careers Blog
“Heartbreaking Reminder—There’s No Elder care”  (7/16/08) Fast Company
“Who’ll Care for Aging Adults? Big Question, Few Answers  (6/11/09), Sloan Work and Family Network Blog