Saturday, January 2, 2016

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.


esLaPorte said...

What happened to us (my 84 year old husband and I, 53 years old) is that I got a full-time job to help pay the bills. I called Interfaith Milwaukee, among others involved in "elder care" and was told that my husband with dementia and thyroid problems "would have to sit on the couch while I was at work." The second day into my job, a worker from the Milwaukee County Department on Aging brought police over to our house and took my husband to a hospital.
I had asked for a non-paid caregiver to come over, and instead I got police and now there is a guardianship hearing to take my husband away on Thursday. We cannot afford $20 an hour for a caregiver until I, at least, got some pay from my job. I believe that my husband's actual problem is that his thyroid condition was not being properly managed by his doctor, not dementia, as his "dementia" is clearing up. He is now in a rehab home and I cannot get information on his care, or have input into his treatment. The other problem is that community resources for low income homes does not exist here in Milwaukee, and I am being blamed for that!

Barbara said...

Did you try asking people from your church to come in and try to help you?

StandUp said...

I agree with Barbara that the best solutions are if you can get care set up yourself with help from family, friends, neighbors, church members, etc. The more you can do without involving the system, the more successful you'll be. Good luck esLaPorte!