"Life of Pi" and Its Lessons for Those Who Care for People with Alzheimer's Disease
In the spring of 2007, a friend loaned me the book, Life of Pi. To tell you the truth, it took awhile to get into the book, but author Yann Martel’s premise stays with me to this day: What story do you tell about circumstances in your life? And does that story match up with what really happened? And are there any consequences if the story you select story and actual happenings don’t mesh?
Why write about this in a sharepost for this site? I guess that two people flash in my mind – Gloria and Lorraine. I met Gloria, another resident in the nursing home locked unit where Mom waived for awhile. Mom and Gloria hit it off pretty quickly, chatting about different things and often dining together. And I really liked Gloria, a petite woman who was always very sweet to me and who had enough presence that many thought she was a visitor to the locked unit (and would help her get out the locked doors).
So it surprised me when the nursing staff shared with me that Gloria’s adult son didn’t come to visit Gloria. If she needed something, he would come to the locked doors and use the buzzer to get a staff member to come over. Instead of coming in, he would drop off the items, turn and walk away. I never met Gloria’s son, but I found myself making up stories in my mind why he couldn’t visit with his mom (who was always asking for him). Maybe Gloria and the son had hit heads during his youth. Or perhaps the son felt guilty about placing his mother in a locked facility (and couldn’t bear to see her fail). Another scenario is that Gloria had a case of “pleasant dementia” that went counter to what she had been like before dementia struck. There was one piece I could never figure out which story (if any) was correct.
Lorraine’s situation also qualified for Life of Pi analysis, but in a slightly different way. Lorraine lived behind my friends, Anna and Bob, for about 10 years and the threesome always were up for happy hours and getting their dogs together. I had the opportunity to visit with Lorraine several times when I visited Anna and Bob.
In 2006, Lorraine, at the age of 87, was diagnosed with a rapidly advancing form of Alzheimer’s disease. Lorraine didn’t have children, so Anna and a team of devoted caregivers took over the day-to-day responsibilities. Relatives living nearby rarely visited Lorraine, who remained in her home.
So here’s my quandary on this story: When Lorraine died, the relatives were ready to take Lorraine’s assets; however, no one wanted Lorraine’s ashes. Instead, Bob and Anna brought Lorraine’s remains on the trip to Colorado so she could be spread in the Rockies along with Mom. I find myself wondering what stories Lorraine’s relatives tell themselves about Lorraine now that they have her money, but refused her ashes.
Which brings me to other related questions - how do you strive for a higher degree of accuracy in terms of the stories of you tell yourself (and others) in relation to what is actually happening? And how do you make sure that your actions in relation to caregiving match the stories you tell yourself (and the world)? I believe these are questions that caretakers should ask themselves each and every day. And I hope that we can strive to make sure that the care we give someone with Alzheimer’s can transcend our various stories in order to focus on what is in the best interest for the loved one who has dementia.