Listen to the Cry of a Family Caregiver

by Howard Gleckman:  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.