I became a volunteer for the Alzheimer’s Association because of the support they gave to me when I needed it. I have been known to refer to myself as the Alzheimer’s poster child.
My first contact with the local Alzheimer’s Association Chapter was in the form of a desperate call to their “Help” line before we even had a diagnosis. “I don’t know if you can help me because we don’t know what’s causing my husband’s problems,” I said.
Penney Braun, the executive director, was the person who answered the phone that day. She assured me that I had called the right place. My relationship with the Greater Missouri Chapter began with a friendly, concerned voice on the phone and it continues to this day.
Thinking back, I know there’s no way to remember everything the Chapter did for me, but I’d like to mention a few of them.
During the Early Stages: They provided caregiving training. I was starting with zero knowledge about dementia. I attended several training programs including one for nursing home staff. I learned important tips about managing behavior, providing personal care, how to reduce stress (both mine and his), and how to provide the correct amount of assistance. We learned how important it was to get our legal affairs in order.
During the Middle Stages: The Alzheimer’s Association helped me by providing respite care. I was in my forties and quitting my job was not an option. Because we were young, we did not qualify for senior services that would have helped us. Through support group, I learned what to look for in a nursing home and that it was a good idea to get Jim’s name on a waiting list. When I realized a home cost more than I earned, I learned about division of assets.
During the Late Stages: My friends at the Chapter office were there to support me when I had to put Jim in a home. They gave me advice when he went through a failure to thrive and had trouble swallowing. Throughout the years of dementia, my concern was that the disease could be hereditary. We had gone through such a long process to get any kind of diagnosis and still were not certain what he had. Once again, the Alzheimer’s Association Chapter staff came through for me. They made all the arrangements for a brain autopsy after his death. They went above and beyond by applying for a scholarship on our behalf to pay for it.
Through it all, the Chapter was by my side. Several members of the staff came from Columbia for Jim’s services. They were there for me from the beginning to the end…and beyond.
Coping with the aftermath of a decade of being a primary caregiver for a loved one with a degenerative brain disease leaves a special kind of emptiness. My entire routine was different, my purpose was gone.
I’ve found new purpose, and you might even call me a woman on a mission. I want to do everything in my power to end this disease. As an advocate, I make my trips to Washington, D.C., and to Jefferson City to help make this a better world for those with Alzheimer’s until it becomes a world without Alzheimer’s.
Copyright © January 2016 by L.S. Fisher