by Wayne Detzler, Ph.D.
On a chilly, December afternoon in 2012, a kind neuropsychologist dropped the bomb: "Your wife has Alzheimer's disease." Then the woman turned to me and said, "From this day onward, you will be her caregiver." She pressed a couple of pamphlets into my hand. Then she sent us on our way.
"So, what does this change?" my wife of 55 years asked.
"I think this is what we promised all those years ago," I replied. "It's in sickness and in health, until death parts us." Of course, none of this prepared me for the steep learning curve of caregiving. Here are 5 big surprises I’ve experienced in my caregiving journey, in reverse order of their importance, with some coming from my journal entries.
#5 — "Sundowning"
Journal entry: "Yesterday was a long day — I woke up about 4 a.m. and we spent the morning at the school, where our daughter, Carol, teaches. Mum seemed to cope well until about 3:30-4 p.m. They call it 'sundowning.' She forgot whether or not she had eaten. She also forgot that we had seen Carol and asked, 'When are we going to see Carol again?'"
#4 — Forgotten Travel
"Do you remember our trip to Kenya?" I asked as we viewed a television special from that beautiful country.
"'No," Margaret said, as she struggled to remember. "It looks familiar, but I cannot remember being there." We’d traveled to Kenya in 1984 to visit students who were posted overseas on summer mission projects. She had completely forgotten this fabulous experience. Slowly I am learning that our shared past experiences are no longer shared.
#3 — Lost Handbag
On a day trip with friends to Northfield, Massachusetts, we went for lunch at a lovely country club restaurant. When Margaret went to the restroom, she took along her handbag. None of us noticed that she returned without the handbag. We drove away toward home, before discovering that her bag was gone. So, we doubled back, but the bag was long gone! With it went all our credit and ATM cards, as well as Margaret's state identification card.
#2 — Christmas Miracle
Journal entry: "One day we spent the afternoon watching two Hallmark romantic Christmas movies. As we snuggled on the couch, Margaret kept saying, ‘I love you. I love you.’ She was not absolutely sure who I was, or if we were married, but she knew that we love each other. What a precious memory we made together.”
#1 — New Form of Intimacy
Journal entry: "For some reason over the night, Margaret has craved intimate, loving touch. Late last night we cuddled and touched, and again at 4 this morning she initiated the touch. My love language is touch, and this is a particularly precious gift for me."
Every day is a new one. I am learning to live in Margaret's world. Each day I follow her lead. When she struggles, I have strong assistance in the community, where we live. I am learning that caregiving is a marathon, not a sprint.
Wayne Detzler, Ph.D., is an adjunct professor at Sacred Heart University in Fairfield, Connecticut, and the is the resident chaplain at Elim Park, an independent living area in Cheshire, Connecticut. Contact him at firstname.lastname@example.org .