Lessons Learned: One man’s journey as an Alzheimer’s caregiver
- Written by Mo Grossberger
- Published: 05 November 2015
As my wife’s Alzheimer’s progressed, I realized that Jeanne was slipping away from me as if I were trying to hold a handful of sand. It became more and more difficult for me to know what to expect. I realized that what had once worked for me one day might no longer work the next. She was not part of my world. I realized that I had to meet her where she was. I would have to learn to live in her world, the Alzheimer’s world.
I contacted someone from the Alzheimer’s Association and found that she was an invaluable resource for beginning to understand the disease and what I needed to do to adapt to my new role as caregiver.
We attempted to set up a tentative meeting with Jeanne’s four children from her first marriage. Later, each of her children would cancel out from the meeting, and I learned that we all grieve differently. I needed to set up a support network outside of her family.
I was advised to set up a health care proxy with her physicians so I could be included in the loop regarding her care.
She was adamant that I attend a support group for support. Their website lists the various choices available in each county. LifePath offers a wonderful group.
We discussed coming up with an emergency plan. This was the first of several times I heard, “What would happen to her if something happened to you?” This became an ongoing and powerful motivating mantra for me.
She suggested that I develop a plan for placing Jeanne in a long-term care facility, a decision I would put off for several years. I felt that with my social work background, who better than I could keep her home until the end? That decision nearly killed me.
She asked me, “What would you do to serve yourself if you had a day to play?” Both LifePath and the Alzheimer’s Association offered caregiver grants that would pay for respite care if I wanted to take some time off. I never took advantage of those because I wasn’t able to relinquish, even for a day, my responsibilities to her.
I had to try to recharge my mind and soul and, above all, be healthy and sane. This was far easier said than done.
How to contact Mo Grossberger