Page 216 - In Pursuit of the Sunbeam.indd

Epilogue
Michael
I had just come home from my friend Michael’s memorial service. When we first began discussing the Household Model and what that could mean for the elders, I was on board. Closer, more intimate relationships would enable us to better know our elders’ needs and desires. But I had no idea what this would mean for one man who would struggle and lose a battle with early onset Alzheimer’s disease.
Michael moved into our household almost two years ago. He had known his diagnosis for about eight years, but as the disease progressed he became less able to name his foe. He told me, “I have Alzheimer’s and it makes me so infuriated!”
Michael’s fury stemmed, in part I suspect, from his nature. He was a retired philosophy professor at the local university and very active in his community politically and socially. He was an ACLU member, a Democrat (he was very glad to inform me) and an atheist. He loved a good fight, but this foe didn’t fight fair.
I didn’t anticipate developing a strong friendship, as we certainly didn’t have a lot of common interests, but as the weeks passed our friendship grew. I found Michael had a very broad taste in music and I had a great appreciation for almost all of his 3,000 CDs. Michael also told me of his travels to Turkey, where he fell in love...with the bean.
Michael could drink four double espressos in one setting. Those who know Michael are nodding in agreement here. At every opportunity Michael and I would sneak off to the café for good conversation and a taste of the bean. We would talk of politics, religion, philosophy and Alzheimer’s.
Michael was in charge of Michael’s life. Just because he had a disease didn’t mean he didn’t have the power to make decisions. Michael chose to hire companions who could ride a bicycle with him and take him to the café and to local hangouts to listen to live music. He also chose to fire companions. He let one fellow go for criticizing Messiaen, his favorite French composer. I asked if this was the only reason for letting him go, and Michael confided that the “oaf” also felt reading the dictionary was a waste of time. From that day forward I informed the new companions that listening to music was one of Michael’s favorite pastimes and it probably wasn’t wise to criticize your boss’s taste in music.
Toward the end of Michael’s life we debated the benefit of employing companions for him. Not wanting to waste his family resources, I asked for others’ input on when we should discontinue the practice. One team member team asked, “If they are holding his hand and playing his favorite music on his stereo, is that a waste of his resources?”
No, we decided, it probably is what Michael had in mind the whole time.
Not every companion could continue working with Michael as he declined physically. One fellow stopped when Michael began using a wheelchair. To their credit, they gave each