The Shriver Report – The Urgency of Now: Family Caregivers and the Future that is Upon Us

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The Urgency of Now: Family Caregivers and the Future that is Upon Us

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Just before Mother’s Day, I was a guest on an Al-Jazeera news segment focused on the challenges of aging in America. It was my first-ever news appearance, and, later, I proudly showed a recording to my adult daughters when they came by to visit. The segment included a look at how elders are navigating the shoals of old age, sickness, and financial insecurity—a future millions of face, and all of us deny.

One segment featured a mid-life African American woman who had abandoned her retirement dreams to care for her mother, who has Alzheimer’s. As the woman fixed her mother’s wisps of hair, both daughters turned to me and said, “We are never doing that. You need to tell us what you want.”

“I would never want you to do that,” I replied—abandon their lives to maintain mine—but the odds are, they may have to. If they cannot care for me (or if America continues to skirt changing public policies that affect the lives of working families, family caregivers, and older adults), I will likely spend a few years of my late old age in an institutional care facility. If I live past 80, I am likely, like half my peers, to experience signs and symptoms of cognitive decline. I will simply not be safe at home and alone.

The numbers tell this story for people my age, “young” Boomers in our fifties: If cancer doesn’t kill us in our 60s, and heart disease spares us in our 70s, dementia and frailty will come for us in our 80s and 90s.

Pharmaceutical advances like HAART and Herceptin and statins have spared us quick courses to death. We no longer die from bacterial infections or childbirth or workplace accidents. Instead, we live long enough to develop one chronic condition after another, and generally live with for many years juggling several at the same time.

The older we become, the more complex and challenging those conditions are to manage. By the time we reach late old age, many of us will be on a real medication cocktail, taking 10, 15 or even 20 tablets a day just to maintain our function. Our joints will stiffen, our mobility will be limited. Our lowered vision and cognitive impairments will cost us our driver’s licenses. In the end, we will reach a point when we must turn to others to help us get through each and every day.

New technologies will help us manage better and longer than our predecessors. Telemedicine will keep us connected with clinicians who can use apps to monitor our vitals and manage our medications. Family members near and far can track our virtual care plans to check in on how we are faring. The web and social media will keep us connected virtually, long past a time when we might once have been relegated to bingo in a senior center. But at some point, all that technology will not be able to help us with the things we simply cannot do on our own: Take a shower. Get groceries. Cook dinner. See the doctor.

For that, we will need family: first our spouses, and then our adult children and their mates. Most often, for the hands-on work, our daughters will step in. The trouble is that our daughters, if we have them, simply will not have the time or resources to step in with the intensity and 24-7 attention we will need (nor should they have to, nor would I want them to). The recession, coupled with significant college debt, has hammered Millenials like my girls, who will not be able to take time off from work to take care of me. I myself will not have enough savings to take care of myself—my own choice for taking years away from full-time work to raise a large blended family of six children. (And for not realizing when I was 21 that I should start saving for retirement, thinking in those days that I was, in fact, forever young.)

A few days after my Al-Jazeera appearance, I attended a White House sponsored regional meeting on the needs of working families: Ironically, the program was held in a huge complex on Wall Street, a world that has paid scant attention to the plight of the working poor.

I had been eager to attend, but found myself disappointed by it: most of the conversation focused on issues that affect younger women of child-bearing age. (Indeed, one panel was even moderated by the editor of Glamour.) Leaders from Mayor Bill de Blasio to Senator Kristen Gillebrand repeatedly made the point that working families need living wages, and that women need paid maternity leave and men need paternity leave. Every so often, someone would add family caregivers as a tagline or as an aside, but their particular needs—and the policies that would help them—were never mentioned.

I have read that women will spend more time as family caregivers than we will as mothers of dependent children. Doing the math, I can see it. But when I mention this figure to friends who are still in their child-rearing years, they simply cannot fathom it.

One speaker caught my attention: Labor Secretary Thomas Perez, delivered the day’s best soundbites.

“It’s not enough to put food on the table,” he said, “If you don’t have time to eat at the table.”

That’s the thing: By the time my daughters are likely to have to care for me, I will need Meals on Wheels volunteers to deliver hot meals, and loving caregivers to spoonfeed me, and more. Making time for that means making policies that enable it.

Sure, I’d just as soon live to be 100 and die in my sleep wrapped in a lover’s embrace. But such dreams seldom occur. As Perez stated, we face the “fierce urgency of now.” Before we know it, now will be 2050, and millions of us will wonder where the time went.

To be sure, we need workplace lactation rooms and living wages. But we also need a time and place and support—and income and respite and more—for the many exhausting years when we are caring for other adults whom we love.

 This post was originally published on Disruptive Women in Health Care.

Janice Lynch Schuster is a Reporter for The Shriver Report.
Janice Lynch Schuster is a poet, essayist, and non-fiction writer. She is also senior writer for Altarum Institute, where her professional work aims to improve lives through improved public health; she is currently working with the Center for Elder Care and Advanced Illness, which aims to “make it safe to grow old.”
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