Thank you for your very accurate picture of the longterm caregiver and also for the term “reciprocal altruism,” which I have never heard used in my years of reading these articles and leaving lengthy comments.
Formal vs. informal support
I was solo caregiver for my mother, who had dementia, for 9 years of home care, then 3.6 years of insanity of caring for her in the nursing home as well. Pretty much every night for 5-6 hours per night. I drove 70,000 miles to visit her. But this is not about the story of her, it is about one of the real reasons that family caregivers do not get paid. The term formal support and informal support.
It is not just a phrase like Patient Centered Care…OH! that has real meaning also! These two support terms define how caregiving or other social services are studied in academia and those terms ride along the legislative path — unchallenged — studies justifying funding and budgets in congress and elsewhere.
Caregivers and well meaning neighbors and church do-gooders are defined as informal support which means does not get paid!! Doctors, nurses, CNAs, LVNs, hospice centers, senior daycare programs, nursing homes, social workers, physical therapists, and so forth. Licensed medical professionals usually. They are formal support and of course are paid. Usually via Medicare/Medicaid or some social welfare program.
So who gets the money? You could be working your benzaga off 20 hours a day by some miracle, a respite care relief person comes in 2 days a week for 4 hours. So your big bonanza is respite, for two four hour stretches which allows you to go shopping for the week, mow the lawn and take a long shower…wheee!
But even being “given” this is a chore. Usually you or the person you care for pays for it. So, someone gets paid and then gets to have a “life,” but it isn’t you. Why can you not be paid? You are not a licensed professional and the 20 year old home aide is licensed (formal support) so they get paid.
Family caregiving is considered a gift
…and protecting against financial abuse.
And there is this thing about relatives getting paid to care for their relative. Part of the resistance has to do with taking advantage of the finances/home of a dependent relative; and too many times, the relative feels entitled to help themselves to the credit card, the checking account, the car, food, freeloading in parent’s house and not really caregiving. Neglecting the elder, abuse.
Another term to consider: Filial Responsibility. In China, this is a cultural foundation which it is expected that children care for their parents in old age. That is why big families were desired, when they were allowed.
This responsibility is held by the eldest daughter…no, the #1 son! However, as usually played out, it has benefits for the son’s family, who moves into the parents’ home, they help with babysitting and perhaps caring for the great grandparents at that time…and then eventually the #1 son’s wife gets the burden of actual caregiving dirty work, while grannie (who got stuck as caregiver for his mother) gets to take her bitterness out on this poor woman…making for great plots in Chinese movies and novels. With any luck it all equals out, with eldest son inheriting the family property. His siblings meanwhile are freer to create their own lives elsewhere.
This Chinese filial responsibility is playing out here in Silicon Valley…and I see it in the old grandparents, often in the Mao pajamas outfits…pushing baby stroller down the street, the wife walking dutifully behind. I read a research paper also that found that these immigrant families send enough money back to China to hire care for their parents back home if they are not able to bring them here.
So guess what is a law in some states? Filial responsibility! Usually meaning ways to stop grown children from cleaning out the parents’ estate to enrich themselves…while technically putting the parent into the low income range to qualify for Medicaid.
The government depends on free caregivers to save money
This is another reason government will not support direct payments for family caregivers: it depends on our free donated services to keep elders out of the ER, the hospital, rehab and nursing homes. It IS part of the plan to save taxpayer money…I have read this directly about legislation proposed and health care savings.
Funds to “support the family caregiver” go to those who create training programs, webinars, support phone lines, support group leaders, brochures. etc. To train you to do it longer time, more hours, and at greater medical depth. I have read figures like the value of family caregivers hours is $400 billion per year. For which you get a well deserved pat on the back! Whoopie
Families are scattered
…and Social Security will take care of them, right?
Family caregiving has long stopped being a multigenerational endeavor, where 3-4 generations lived in big farmhouse or near each other. Often, the grown child nearest the elder gets stuck with it…or the unmarried woman (me)…the other grown siblings often run for the hills and throw rocks, or do some sort of task long distance. But so many are stuck with the entire caregiving burden and then attacked as well. As I was and still am even 1.5 years after mom’s death.
Clinton has a clue
Of course the candidate who knows her stuff on this is Clinton, and her current proposals are in line with current rules of the formal vs. informal structure. She has created helpful bits that do not include direct funding, like allowing caregiving quarters to count toward your social security earning quarters…or allowing expenses to be deducted from your income tax (big deal, if you had to give up work)…or somehow getting some respite care hours. She has put her foot in the door here…and I could see the logic of what she proposed so far. None of it violates the “not paid” classification.
Third classification needed?
We need a third classification like primary support, which could be paid a stipend along the lines of an SSDI payment. Why should taxpayers pay for family caregivers? Because chances are that the typical taxpayer is a deadbeat and not helping with his own family. Deadbeat Nation I like to call it.
You can read her original post here.