A Gradual Disappearance: Caregiver’s book has family insights on coping with Alzheimer’s disease

It’s called the Memory Disease, and it’s the new epidemic. Alzheimer’s and dementia are overtaking millions of seniors at alarming rates. Elizabeth Lonseth has written a book on the subject, “A Gradual Disappearance,” and she spoke about her family’s struggles with Memory Disease on Oct. 11 at the Oakmont Assisted Living Center in Pacific Beach. The audience included caregivers, seniors, family members and health professionals.

Lonseth’s book recounts the tale of how she and her husband took the journey of caregiver four times over — first with her father, then with both of her husband’s parents, and finally with her mother — all who were diagnosed with dementia and Alzheimer’s. Throughout the story, Lonseth offers tips on the struggles that come with care-giving.

She started her presentation with some staggering statistics: One in three seniors will die with Alzheimer’s disease or dementia. One in 10 people over age 65 have Alzheimer’s. Two out of three of those are women. Alzheimer’s is the sixth leading cause of death in the United States.

Her personal introduction to the disease occurred when her father was diagnosed with vascular dementia during the last two years of his life, occurring after 14 years of heart attacks and strokes. Lonseth was in her mid-30s, married, raising three children and busy with a career in interior design. She recalls her regret and denial in accepting the sad situation.

“It was heartbreaking to watch my father, a forest geneticist, function on the level of a child,” she recalled. “I was not as supportive of my mother as I should have been. Occasionally, I would give my mother a break, but I wish now I had done more.”

Seven years later, the same reality hit full force again with her husband’s parents.

“At first, my husband and I made the mistake of trying to correct his parents’ behavior and attempted to help them learn again what they had lost. That didn’t work. They only became frustrated and more agitated,” she said. So instead, the couple began coming alongside them and joining them in their reality.

“We began to try to figure out where they were in their head at the moment — maybe 16 again, or in another part of the world,” she explained. “My cousin told me to ask them, ‘How old are you today?’ Their answers often gave us clues as to how to interact with them.”

And finally, it was her mother who got Alzheimer’s. She lost her motor skills as part of her disease, and Lonseth hired an in-home caregiver 20 hours a week. She learned to recruit family members and friends to help out, too.

“A neighbor girl was hired to put mom’s dinner in the microwave and chat with her while she ate,” Lonseth related. “As we needed more help, a friend of my daughter’s become the afternoon and evening caregiver. Occasionally, she would take mom to church. Two of my daughters took turns living with their grandma so the night shift and weekends were covered. I came in every Thursday to give everyone a break.” (She had to take a plane flight weekly to do so.)

Throughout all the years of care-giving — however grueling — Lonseth said she also learned a lot about how to handle what seemed like a hopeless situation. “It’s financial, it’s emotional, it’s dealing with the medical system, and it’s planning for the future,” she noted. “You can’t stop it, but you can prepare for it.

“Knowing how to communicate is crucial. You need a lot of patience because your loved ones need time to process what you’re saying. Stay on one subject when talking. Pick your battles carefully. And avoid saying no. Instead, say things like ‘I wish we could.’ ‘Wouldn’t that be nice?’ ‘That’s a great idea.’ ‘That sounds fun for next time.’ ”

Lonseth’s other tips for handling the journey

  • Create special moments with your loved one, like going on picnics or sharing music together.
  • Keep a journal of events or things they say, like funny one-liners.
  • Use humor on a daily basis, it goes a long way.
  • Do constant research on the disease as the patient’s needs change.
  • Get professional help to free you up from physical care.
  • Take a break. If you don’t take care of yourself, you can’t take care of others.

Lonseth notes that a huge part of the problem in treating Alzheimer’s patients is denial.

“Too many people are falling through the cracks and not being diagnosed until they are well into the mid-stage of Alzheimer’s or another type of dementia. Lack of education on the part of family-practice doctors and family members creates problems.”

Resources

  • Lonseth admits there is no single formula or answer to deal with memory disease, but there are many common threads. The Alzheimer’s Association offers a wealth of information, as well as free classes to patients and caregivers. For details, visit alzsd.org
  • To purchase “A Gradual Disappearance,” go to elizabethlonsethnovels.com
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