This is the traditional time for resolutions. Resolutions seldom seem to hold; instead I have a new hope, in keeping with the Hope for Alzheimer’s theme. This is a hope for how Cindy can live out her life.
Those who have read past blog entries know I’m sincere when I say life is more about the quality than the quantity. I don’t wish people “safe travels,” I wish them “happy travels.” In our preoccupation with safety and security as a society we have become less courageous, less kind over recent decades. It’s not just a practical matter that I’m more focused on Cindy’s quality of life, rather than quantity.
My hope for Cindy stems from our experience with my Mom when she had Alzheimer’s. Taking care of her during the first five years of our marriage was the reason why we ended up in the house I was raised in. Others observed that we improved Mom’s quality of life while we were here … or at least we did until about this time 24 years ago.
Mom became melancholy with advancing dementia, but was excited about the prospects of her son Dave coming up for Christmas in 1990. Then she had a stroke a few days before Christmas. The stroke was actually a minor incident with no lasting physical impact, but the consequential events from that stroke were life changing.
Mom was ready to come out of the hospital on Christmas Day. As is our tradition, we planned to be celebrating Christmas with Cindy’s family that day, while brother Dave would be celebrating with brother Ernie up here in Norfolk. We assumed they would pick Mom up from the hospital to spend Christmas with them. They assumed that as Mom’s caregiver we would pick her up and bring her to them.
Instead, Mom sat in a hospital waiting room the whole day, sitting in soiled pants for much of that time. When she got home she stopped eating. After about a week we sent her back to the hospital to revive her. From the hospital she went to a nursing home, where she spent the remaining few months of her life, growing increasingly morose towards the end. Particularly disturbing to me was she died with no family nearby; she passed away with a relative stranger holding her hand.
That end to Mom’s life haunts me ever since. With foresight I would have let Mom end her life the way she was choosing to do at home, trying our best to feed her but not forcing anything. Then again, with foresight I would have double checked to make sure who was picking her up at the hospital on Christmas Day.
Ah, but it’s only hindsight that is 20/20. I do not know how events will play out with Cindy. For that matter, I don’t know that I would do things differently about reviving Mom even with foresight going for me. Keeping a loved one alive even against their wishes is a powerful instinct. I cannot know how events will play out, how decisions will be made, either on Cindy’s or my own end. All I can do is hope.
Other people’s hope for Cindy, at least expressed to me, focuses on how much longer she will live. I’m focused on quality over quantity, even in regards to pursuing all the items on the Brain Health Checklist I’m compiling. My hope is for Cindy to have a high quality of life until near the very end, for her to be able to perceive and chuckle at my corny jokes and childish antics up until the time that she passes away with me nearby for comfort. Whether that goes on for a few more months or a few more years is not the point, just that she passes on feeling how well loved she has been her whole life on earth.