Thursday 15 May 2014

He Said, She Said: Is Caregiving Hell Where We're At?

Today, a Forbes blog post caught my eye.  Maybe it was the title: "Informal Caregiving?  Free Caregiving? Seriously?" ... or maybe it was because I always enjoy reading what Howard Gleckman writes.  He's the author of a wonderful book called "Caring For Our Parents" and he's a fellow at the Urban Institute.  Here's what he said followed by what I said.
In a nice blog post the other day, AARP’s Lynn Friss Feinberg reminded me of one of my great pet peeves: The way some so-called experts describe the help family and friends provide loved ones with care needs. Lynn called them out for using the phrase “informal caregiving,” as if this were merely some sort of casual relationship. You know, something like old pals getting together every couple of weeks for tennis.
The phrase itself acknowledges how people misunderstand what family caregivers do, or their connection to those they are helping. Can you imagine describing a parent’s care of a child as informal? It would be beyond bizarre. Yet somehow, it is a widely accepted way to label an adult child helping a parent, or a wife assisting her husband. As Lynn asks, “Is there anything casual about an adult daughter helping her father use the toilet?”
In part, the phrase is a clumsy attempt to distinguish between family support and paid aides. But it is also reflection of how little some value the role family members play in supporting relatives with chronic conditions or disabilities. But language that dismisses family caregiving also helps frame in unhelpful ways the policy debate over how we deliver and pay for long-term supports and services.
“Informal caregiving” isn’t even the worst of these descriptions. That award goes to “free caregiving.” The implication: There is no cost to the support that child gives to her parent, or a wife provides for her frail husband.
The cost, in fact, is enormous. Anybody who has done it (and both Lynn and I have) knows about the price they pay—physically, emotionally, and financially.
Take just the financial cost. One survey reports typical caregivers spend $5,500-a-year out of pocket to assist a family member.
And that is just the tip of the iceberg. A 50-something woman who quits her job to care for a parent will forego more than $300,000 in lifetime income. Not only will she reduce her current wages, but she’ll also give up retirement income by contributing less to her 401(k), losing her employer match, and diminishing her future Social Security benefits.
People who talk about “free” or “informal” care really mean is that no money changes hands for family care. Nobody is paying for home health aides, assisted living, or a nursing home. Specifically, neither government nor private insurance is paying. Families just do it and somehow absorb the cost. Lynn and her colleagues at AARP estimate that economic value of family caregiving topped $450 bill in 2009.
And that’s why this language really matters.
If family caregiving becomes widely described for what it really is–rewarding for sure, but also very hard–people might demand help. That’s what happened in Japan.
Working women who were also caring for their mothers and mothers-in-law gave their own label to what they were doing: Caregiver hell. That’s a long way from “informal caregiving.” And it had a powerful effect, driving the government to create a national social insurance program for long-term care.
Here, policymakers live in mortal fear that family caregivers will similarly demand help. If, for instance, everyone eligible for Medicaid benefits took them, the cost of the program would explode. But people don’t, since it often means moving to a nursing home.
Make the program too good and people will use it. They even have a name for the phenomenon: The woodwork effect. Like cockroaches, people will come out of the woodwork to apply for benefits. Offended yet?
Similarly, private insurers understand that many families will continue to care for their aging parents without paid help, even if they have long-term care insurance. This phenomenon is so widespread, it is built into rates. Without it, already-high premiums would increase even more.
So, we blithely talk about informal care and free care. Makes it sound so easy. As if the issue will just float away.

From Donna Thomson: 
With respect, there’s a tone to your remarks that I find… sad. I am a lifelong caregiver – our son is 25 and has multiple, severe disabilities. I also help to care for my mother who is 92. I am an author, consultant and speaker on caregiving issues. As in the disability community, we in the caregiving community are struggling to identify a vocabulary that accurately reflects both the struggles and the joys of caring for our vulnerable loved ones. I have used the terms unpaid care, family care, informal care, natural care and loving care at various points in my writing and speaking. I don’t think any of these captures the myriad of caregiving experiences that individuals face on a daily basis. But ‘caregiver hell’ is one term that excludes the powerful reality of the love we feel for our family members who need help getting through the day. This is one descriptor for my job that I will not be using. That is not to say that I am not a strong political activist for due attention to be paid to the needs of those giving care – I am. But I will always lobby (no matter how I refer to family caregivers) for a broad societal support that includes the help of extended family, friends, neighbors, employers, the medical community and all levels of government. I don’t mean to imply that I have never experienced ‘caregiving hell’ – I most certainly have and it was always when I was unsupported by others. But even in the darkest moments, my love for my son never wavered. I talk about the ethics and economics of caregiving on my website and I strongly support secure personal support networks for caregivers ( You will see throughout my work a strong determination to tell the true stories of the caregiving experience, a call for broad support and a narrative of the love that drives us.

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