More than 5 million American may have Alzheimer’s diseases, an irreversible, progressive brain disorder that steals memories, thinking skills and the ability to live life on a daily basis, according to the National Institute on Aging. Symptoms often first appear when a person is in his or her mid-60s, leaving someone else – a loved one or professional care provider – to look after the patient as the disease, the most common cause of dementia among older adults, progresses.
There is no cure, and the time to death can be as little as a few years in older patients to as long as 10 or more years if the person is younger. The disease is personal, affecting each patient – and caregiver – differently.
In “Tangles and Plaques: A Mother and Daughter Face Alzheimer’s,” Susan Cushman, a Jackson native who now calls Memphis home, shares blog entries spanning more than eight years as she deals with her mother’s progressive dementia and the feelings as an adult child becomes the parent figure.
Cushman shares what’s in her heart as she comes to grips with this incurable disease that’s stealing life from her mother, Effie Johnson, who lives in Jackson. The author realizes that as the mother forgets, the daughter must forgive. As memories die, Cushman learns that others live on, handed down to the next generation. Stories of growing up in Jackson; visiting her parents’ retail sports store, Bill Johnson’s Phidippides Sports; and eating Christmas fudge and divinity with her mom.
“Mom is second-generation Alzheimer’s,” Cushman wrote in her introduction. “Her mother died with the disease at age 86 – in the same nursing home where my mother lived.”
The collection is extremely personal, and each blog, starting with the first on Nov. 24, 2007, was written within a day or two of visiting her mom. Cushman writes about the simplest thing – misplaced glasses – to the hardest – end-of-life issues. Effie Watkins Johnson, 88, bedridden and speechless, died last year after eight years in a nursing home.
“I never had reservations about sharing these stories which began as blog posts, so they were ‘out there’ as they were happening,” Cushman said by email. “Writing them was therapeutic, of course, but the responses from people reading my blog became a greater impetus to continue writing and sharing the posts.”
The title not only refers to biological markers – amyloid protein plaques and tau proteins tangles seen in an Alzheimer patient’s brain, but also the tangles and scars of emotional and physical baggage. As the twisted fibers (tangles) build up inside the brain’s nerve cells and protein fragments (plaques) fill the spaces between those cells, Cushman’s mother is losing her memory, the very stories that make up the fabric of her life.
Cushman finds humor when possible, but turns to others – God, medical experts, friends and even her past – when the days are rough or cloudy. Her tone is more conversational than most accounts dealing with Alzheimer’s, and that’s what makes her writing so real – and raw. She doesn’t gloss over past problems she’s had with her mom or the hurtful things that a dementia person can unintentionally say or do. The author shares the strength she finds from forgiveness and letting go of the guilt of being a long-distance caregiver.
As the number of Alzheimer’s disease patients increases each year, so do the number of caregivers. The Alzheimer’s Association estimates that one in three seniors dies with Alzheimer’s or some form of dementia, and that more that 15 million people are caring for those with dementia. Knowing that someone like Cushman has been where you may someday find yourself offers an extra dose of strength and dignity.
“Tangles and Plaques is not a ‘how to’ for caregivers of loved ones with Alzheimer’s,” Cushman said. “It’s not an academic work or a resource for caregivers.
“But,” she said, “the essays are full of real-life anecdotes, reflections, frustrations and things learned along the journey. I hope that readers who are caregivers will relate, will feel that they are not alone, and will even find places to laugh and to cry as they read our story.”