I recently received a letter from a caregiver in California, expressing her frustration at the lack of support for family members who sacrifice so much to help loved ones. This is a lightly edited version of what she wrote:
I read your story on the difficulties of caring for a family member with dementia and think you really have the problem in focus: Although Alzheimer’s Disease research gets funding, the funding is NOT for the caregiver–save for tip sheets, training programs, support groups, and the advice to care for yourself first. There is no direct support or financial aid to help pay the bills.
For over a dozen years I cared “solo” for my mother who had Alzheimer’s–solo because I was the only family member living with her. She could pay for some hourly help, but even during those hours, I was doing errands and cleaning, and then was back with her all alone after the aide left. For many years, there were no aides or sitters. It was a story I heard often in caregiver support groups: Caregivers feeling abandoned by their families, and sometimes caring for one relative after another.
A member of an online caregiver support group told her deadbeat sister “When did OUR mother become MY mother?”
So why is it we get no outside help? I think it is because we are classified as “informal support.” That means “not paid.” Government dollars may go to research, nurses, aides, doctors, hospitals, nursing homes, and senior day care centers. It goes to “formal support” and that means paid. But not to us. So we are in a Catch 22.
Who is getting off Scott free? Family members who abandon their parents and thrust all care onto one sibling. That’s why government should directly support family caregivers, to prevent abandonment of elderly, sick, and disabled relatives by other family members. Some direct funding could at least keep the active caregiver’s head above water. Perhaps a classification change of formal/informal support is needed, if it is indeed a wording problem.
My mother died last spring. My life is in ruins. I’m living in a rental room, my teeth are rotting out one after another. I am almost 68 now….
I hope you can get through to someone who is willing to break through this Informal Support trap. Even the White House Conference on Aging bought this concept hook, line, and sinker. Their caregiver panel was an outrage…dominated by Walgreen’s drug store and its contribution to caregivers: being open 24/7. Bank of America was given a platform to tout its retirement financial services. The one real caregiver on the panel was almost totally ignored. I hoped for more from President Obama.
Paid family leave does not come close enough to help those of us who care for family members for years. Hillary Clinton has ideas that come closer, such as counting caregiving time to help qualify for Social Security. But her tax break is such a small amount. Perhaps her hands are also tied by this idea of informal support.
Today, I live in a house owned by my mother’s former “sitter” …with nine of her friends and relatives. She was kind enough to take me in.