I met a caregiver (“Martin”) last month at the Alzheimer’s Association. We were both passing through for our own purposes and for some unknown reason, we made eye contact, and instead of just going about our busy-ness, we said hello. The next thing I knew, we were sitting down, sharing our stories about why we were there.
This gentleman’s wife of 43 years (we’ll call her “Susan”), is living with Alzheimer’s Disease, She was diagnosed five years ago and it has been a slippery slope for him. First, her short-term memory began to fail. Then she started to need help with basic activities and could not quite manage to get dressed by herself, or remember when she last had a shower. He shared with me that although he felt sad to watch her decline, what was hardest for him was the loneliness he felt, almost all of the time. They have a wonderful marriage and raised two daughters who unfortunately live on the other side of the country. He and the love of his life owned a business together. He recently sold the business to be with her full time. He knows his time with Susan is precious and all too short
The holidays are particularly difficult for Martin but have also been a revelation. For the past two years, with Susan being more and more limited in terms of preparing for the holidays, Martin spent those first few weeks of the holiday season depressed, sad, and lost. He joined a support group, sponsored by the Alzheimer’s Association, and learned that there is actually another way to look at his situation. Every member of his support group is the spouse of someone living with dementia. They are heroic in their efforts to care for their beloved and practice self care at the same time.
Instead of mourning the loss of the type of companionship he had enjoyed for over four decades, Martin decided to “open the aperture” a bit and searched for what Susan is still able to do. She still knows all the words to all their favorite holiday songs, still enjoys a brisk walk in the cool temperatures, loves to eat holiday cookies, and is thrilled, as always, by their Christmas tree. And they still laugh together.
Martin shared with me that for the first time since Susan’s diagnosis, he is actually looking forward to the holidays and is determined to stay on course with appreciating what he still has in his beautiful wife. He has talked about this with his daughters and is coaching them on his perspective so that they, too, may enjoy their Mom and the simple things they can take pleasure in as a family.
I am so moved by Martin and his ability to be in the present with Susan and continue to notice what she can do, rather than what she cannot.
Inspiring encounters such as this one continue to remind us why we do the work we do with families – these unexpected personal stories touch our hearts and teach us how to be better in our own lives.
- Marcy Baskin/Managing Director of Senior Care Authority