Caregiver Insights
Caregivers Suggestion
A High Point in Caregiving
There was one period in our dementia experience that was the high point of our journey. Things were not going well, and this is how I described our situation in my journal ten years after the first signs of memory loss, and two years after the Alzheimer’s diagnosis: “Alzheimer’s is an insidious thief that steals the past, the future, and the ability to reason. Word recall and name recognition decline. Early episodes of short-term memory loss become difficulty processing new information. Time loses relevance. Reality and imagined reality become indistinguishable. Personal initiative declines. Long-term memories turn cloudy, then disappear. Conversations become disjointed and trivial. And nothing can be done to prevent it.”
Understandably, dementia takes a toll on the whole family. I kept asking myself, “What can I do to help Gayla find a spark in her life?” The answer came to me, and it turned out to be the best decision I ever made as a caregiver.
I had information available on Gayla’s early life from two interviews that had been conducted years earlier. I had all of my memories from our lives together for more than fifty years. These could be the source of information for writing a short book about her life. But the real bonanza came from asking her closest friends to send me an email about their memories of Gayla – times of achievement, folly and joy – and ways in which Gayla would best be remembered.
After the 20-page book was completed and I presented it to Gayla, this was my next journal entry: “Over the course of our lives, each of us has a few moments that stand out as exceptional, moments that will always be remembered. For me, today was one of those. I presented Gayla with the life history book I prepared that recalls her memories as a child growing up and my memories of our years together from when we met through our early retirement adventures. By itself, this was a special gift. But the thrill that made this book special was the comments about who she is and what she has meant to her closest friends. The messages they left are absolutely stunning in their sincerity and respect for Gayla. She is a remarkable friend who has touched people deeply, and to give her a book that memorializes their love and concern was as meaningful as anything I have done in recent years. Her joy in receiving it, after all she is going through, was as rewarding as anything I have ever done.”
This book had staying power, as I wrote in my journal a week later, “she has had more of a twinkle in her eye and hop in her step.” Even a month later, the book was “still paying dividends.”
Being retired, I had the time necessary to devote to this. Most caregivers probably do not. But maybe somewhere in this story there is a hint of something you can do to brighten your loved one’s days. People with dementia lose self-confidence and feel lost. Solid evidence that their lives have mattered and other people care makes living feel more worthwhile. This is another way to make a difference.
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