ENGLEWOOD — Norm and Kay Lewis are like two new high school sweethearts. He watches her closely and can sense when she needs some help. They read each other’s body language and pick up cues from one another.
“’What are you looking for and what do you need?,’” Norm, of Englewood, will say in a calm and comforting voice after watching his wife search for an item whose location she can’t recall. As her husband and caregiver, he does not mind. “She’s my ears and I am her memory.”
Life partners for 41 years, there is comfort in familiarity. The diagnosis of Alzheimer’s has brought them even closer. “We’re with each other most of the time, we’re very close,” said Kay. “I feel like a teenager going steady.”
November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. In the United States, 16 million Americans provide unpaid care for people with Alzheimer’s or other dementias. About 42 percent of dementia caregivers are male, like Norm Lewis. In the Miami Valley, about 30,000 people have dementia and approximately 90,000 people serve as their caregivers.
Lewis has gotten help from the Alzheimer’s Association Miami Valley Chapter. The organization offers 17 caregiver support groups in seven Miami Valley counties. He attends the group at Miami Valley Hospital North.
Anyone looking at Kay Lewis would see a happy, confident and well-dressed woman. It has been six years since she began to show signs of memory loss and three years since she learned she had Early-Onset Alzheimer’s. But the disease has taken a toll on her short-term memory. Within hours, she forgets what took place. “We had a phone call with my aunt last night and she cannot remember the call,” Lewis said. He accepts the challenges and responds with understanding.
“I’ve told her you learn to be a good liar,” he said. He constantly walks a balance of not wanting to aggravate his wife and drawing on the reserve of patience he needs to be a good caregiver. “I wish I was a perfect caregiver. There are times when it gets frustrating and she’s wonderful.”
“There is a line between helping and always feeling like you are correcting,” said Lewis.
Kay Lewis does not see that. “He is doing very well. I always stand back and look at his communication skills. He can talk to anybody in a respectful way,” she said.
Lewis regularly attends a monthly Alzheimer’s caregivers support group to help him to become a better caregiver. “I’m in awe of the caregivers I’ve met who have been role models to me. I come home every time and tell her that,” he said. “The disease brings out the best in people. It’s a challenge and everyone I’ve met has risen to the challenge.”
He said he likes attending the support group because “I think we are able to really share what we are experiencing, feeling…..At a support group, you can talk about everything. People offer coping techniques; ‘have you tried this?’”
From the very beginning of their journey with Alzheimer’s, Lewis has been in search of the best information to help the two of them live the best life they can for as long as they can. As soon as Kay was diagnosed at the Cleveland Clinic, he thought, “’now what do I have to do to go from here?’” He said information about the Alzheimer’s Association and a list of caregiver support groups were in a packet of information given to them by the Cleveland Clinic.
Since then, he said his focus has been to “learn as much as I can about the disease. I’ve never been a woe is me person.” Kay attends a support group for those diagnosed. They both have been to social activities for those diagnosed with early-onset. And they will continue to travel like they are accustomed to until a time comes when they cannot.
Now, Kay said, they are happy that they are “making memories most of the time.”
For a list of local caregiver support groups, please go to: https://alz.org/media/dayton/documents/Support-Group-Grid-Flyer_New-10-15-2018.pdf
The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. Approximately 5.7 million in the U.S. are living with Alzheimer’s disease or another form of dementia.
The mission of the Alzheimer’s Association is carried out in Ohio by seven local chapters coordinating care and support, awareness, fundraising and advocacy initiatives. For more information on the Alzheimer’s Association, call 1-800-272-3900, or visit alz.org.