Submitted by Dementia Friendly Pierce County – LCS Northwest.
This is the story of Michael and Jean as they traveled the road of her living 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; 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.” 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.”
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.”
Michael Magee is one of our Dementia Friends, helping to create a Dementia-Friendly Pierce County. Learn more at dementiafriendlypc.org or contact us at dementiaservices@lcsnw.org.
Thank you. It’s a learning curve, isn’t it. There should be some kind of assistance, instruction, tutoring for those of us on the side of providing such care/assistance. It’s very difficult to wade through.
There can be no greater love. I already knew of your love and now learn it was deeper than I even imagined. Thanks for sending this.
I love this story. Going through this with my brother right now. He recently told me ” I had a life” This journey is difficult and at times lonely. I love him very much and pray for strength every day.
Thank you for sharing.
Linda, Frankie’s little sis
What a loving article! I very much respect and admire caregivers who remain committed and devoted to their partners no matter what happens to the partner’s physical or mental state.
The story reminded me of my father. Years ago, it was clear to my sister and I that my mom had all the signs and symptoms of Alzheimer, but my father couldn’t accept that. Instead, he was very impatient with her believing that her strange behavior was deliberate. The local Alzheimer support group was an incredible help for us. We purchased a couple of books on the topic and left them on the kitchen table. As hoped for, my father who was a voracious reader quickly read both. He then understood and immediately became much more patient with my mother. His acceptance set the stage for all the future planning and interventions.
My father cared for my mother well beyond the stage that most partners would or could have. Caregivers, take care of yourselves and don’t walk this long and difficult path alone. Thank you, support group members, for your sharing of experiences, coping strategies, and firsthand information. Local support contact information can be found at this website:
https://www.alz.org/media/alzwa/documents/Revised-September-2021-Support-Group-List.pdf