Old Mission Peninsula’s couple’s love stories persist through dementia, death | News
TRAVERSE CITY – Dementia can strike a loved one unexpectedly.
Such was the case of Stephen Lewis, a Peninsula Township resident whose wife, Carolyn Johnson Lewis, succumbed to the disorder in 2019.
Stephen, 78, said his wife was diagnosed with dementia by a neurologist after experiencing some unsteadiness on her feet in 2016.
“My first reaction was – it shouldn’t be because I’m 10 years older than her,” Stephen said. “And we always joked that she could push me around in my wheelchair.”
Stephen said he had quickly become his wife’s primary caregiver, adding that he had never really considered putting his wife in a care facility.
“I wouldn’t visit the love of my life and I’m sure if the positions had been reversed I would have done exactly the same for myself,” he said.
Stephen said he knew little about dementia at the time, but he sought assistance from a variety of sources, including nurse support from Munson Medical Center in Traverse City several times a week.
“It was a learning experience,” he said. “If I had done this alone, it would have been a lot more difficult.”
Over time, Stephen said his wife was bedridden because she had a crippling fear of falling.
“It has to do with the fact that the brain doesn’t know where the body is in space,” Stephen said, adding that it made his wife lose her willingness to walk.
On a recommendation, Stephen said he had found a hospital bed for his wife.
“I resisted this idea for a long time because I didn’t want to turn the living room into a hospital room,” he said. “I’ve tried … the best I can to hold onto the life we once had.”
Eventually Stephen said that his wife was starting to lose her ability to articulate herself.
“She was limited to one-word answers,” he said. “She still smiled sometimes. Ordinarily she (would) respond to holding hands with a responsive grip of her hand on mine. “
Stephen said there was a stark contrast between his wife before and after dementia, but the core of both their spirit and their relationship remained.
“I think the woman I fell in love with was still there,” said Stephen Lewis, remembering one morning when his wife woke up and called his name. “She said my name ‘Steve’ in a kind of plaintive tone, which indicates that something is either frightening her, bothering her, or something is wrong … And I walk next to her and take her hand. I say something like, ‘I’m in the right place here. Steve is always right here. ‘And she said with all her heart, “Thank God.”
“The crux of the relationship – it stayed,” he added. “I always felt that she was responding to me, if not verbally, physically, by touching my hand or something … At the same time, it reminds you of how much is lost.”
In the end, Stephen said his wife’s deterioration came on very quickly when she started having difficulty swallowing.
“That was the final,” he said.
Stephen wrote his experiences in an upcoming book, “Dementia: A Love Story,” published by Mission Point Press. He said the book is available for pre-order through Horizon Books in Traverse City as well as through Amazon.
He is a regular book / travel columnist for the Record-Eagle. See page 5C for its most recent shipment.