Lessons Learned: One man’s journey as an Alzheimer’s caregiver
- Written by Mo Grossberger
- Published: 02 October 2015
“Your wife has been diagnosed with dementia of the Alzheimer’s type.” Those few words changed our lives forever, but allow me to digress.
My name is Mo Grossberger. I had been my wife, Jeanne’s, caregiver for eight years. Although I have been a geriatric social worker since the mid 70’s, very little of my training prepared me for the years to come.
These next few weeks, rather than give you a blow by blow, I want to share the many lessons I learned from this experience that reshaped my life forever.
I guess the story began in Ohio in 2000 when she and I were working for a mental health agency. I was running a group home, and Jeanne, an R.N., was managing support groups for people with schizophrenia.
One day the Human Resource Director came into her office and told her that Jeanne’s staff had been complaining that she was being repetitive and forgetful. As a result the agency had scheduled her for a full, three-day, psychiatric work-up, scheduled to begin the following week. “Be tested or be fired” were the parting words.
Both Jeanne and I were very upset about how this was handled. At the time, I knew nothing about Alzheimer’s. I had noticed she was a little redundant and forgetful, but I attributed that to the normal aging process. Many of my clients displayed similar behavior.
She was tested and the results were: anxiety and depression, loss of some executive functioning (the ability to complete multistage tasks like recipes, bill paying), and mild cognitive impairment. With that diagnosis, the hospital felt that she DID NOT have Alzheimer’s.
Now it is realized that in many cases these are early signs of Alzheimer’s.
Alzheimer’s is a form of dementia that is irreversible, degenerative and terminal. It affects the brain in two ways: a formation of protein tangles and an amyloid build-up, both of which short circuit the brain and won’t allow information to travel around as it should. Someone used the example of a shotgun blast to the brain effecting different parts for different people. It doesn’t affect two people the same way. If you know one person with Alzheimer’s, you only know one person.
Currently there are only five FDA-approved medications for the treatment of Alzheimer’s disease, but none of the medications prevent or stop the disease. They merely slow down the progression.
I could take you through the tears, heartbreak, and frustrations of caregiving, but no two people grieve the same. Let’s just say that at the pinnacle of my turmoil, I dropped to my knees and asked out loud, “How can I stop drowning and start to grow from this. What are the lessons?”
The lessons follow.
How to contact Mo Grossberger