(Editor: In this article, Michael Magee writes about the road he and his wife, Jean, traveled while she lived with dementia.)
My experience with dementia comes through my wife Jean, who was diagnosed with dementia in 2012, and then lived in a dementia care center for the last eight years of her life.
In retrospect, I could see the symptoms: Confusion, losing keys, and finally a car crash; all of this in increments. The care center became our home and I actually stayed overnight with her, had breakfast, dinner, went for walks, and became a de facto part of her life there. It never took away her or our humanity.
We went to concerts often. And the night of our last one, Gustav Holtz’ “The Planets,†we magically looked through a telescope and saw three of the moons of Jupiter.
Dementia is like that – looking through a telescope at something far away, training your eye to see, understand and make sense of what you’re observing, but not being able to see everything.
Jean and I were together for 20 years and married at the care center, four years before she passed. A simple ceremony followed by a honeymoon in Poulsbo. While we could we traveled; Portland a couple times on the train, up to White Rock, and Vancouver, B.C. I married Jean with dementia and was committed, not only as long as she had memory, but long after. My decision. It made no difference to either of us, it was just a different kind of train trip than I imagined.
When I was a teenager, my brother worked at a television station in Ohio. He was working, so another man at the station gave us a tour of the area. It was Rod Serling (screenwriter and creator of the television series “The Twilight Zoneâ€); with dementia you’re traveling in a parallel universe.
On Jean’s last birthday, a group of her friends sat out in the backyard eating cake and melting ice cream in the sun. Jean was a poet and playwright, and we each took turns reading one of our favorite poems that she had written. As we went around the table, she clapped in delight, saying, “I like that!†It was as though we had given back her own poems as a gift for her to “remember.â€
Dementia is honesty “disrobed.†It robs you of deception and self-deception, and it provides an opportunity (requoting Socrates) to “Know thyself.†Jean once said about us, “We’re the same person.â€
The experience of knowing and loving someone with dementia was summed up in the words of my friend Carl Palmer, a hospice volunteer. After a difficult visit with Jean when it was clear she didn’t recognize me, Carl said, “’Always know, Michael, she may not always know who you are, but you’ll always know who she is. Always.’â€
Michael Magee is one of the Dementia Friends in the Dementia Friendly Pierce County initiative, administered by the Dementia Services program of Lutheran Community Services Northwest and funded by a federal grant from the Administration for Community Living. Learn more at dementiafriendlypc.org or by e-mailing or calling dementiaservices@lcsnw.org and 253-272-8433.
CONFERENCE HAS FOUR DAYS OF FREE, ONLINE ADVICE FROM EXPERTS ON ALZHEIMER’S
Alzheimer’s disease and other dementias challenge medical personnel, professional care managers, and family caregivers. Nearly half of all caregivers who provide help to older adults do so for someone living with some form of dementia. In the U.S., more than 6 million people suffer from Alzheimer’s, and the number is projected to grow to 12.7 million by 2050.
That and related issues will be the subject in November of the 2021 Pierce County Alzheimer’s Disease Conference, produced in partnership with Pierce County Human Services and the Health Care Providers Council of Pierce County. The virtual conference will provide information, practical skills, and inspiring stories during online presentations from 11 a.m. to 12:30 p.m. on consecutive Mondays and Wednesdays on Nov. 1, Nov. 3, Nov. 8 and Nov. 10. Participation is free, but attendees must register in advance online at www.piercecountywa.gov/alz or by calling Pierce County Aging and Disability Resources at 253-798-4600.