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Constance Alexander: In both fact and fiction, emotional toll of Alzheimer’s is overwhelming

Ben has that memory thing. He forgets the name, but he knows it’s normal to be able to remember his childhood but not yesterday. Sometimes he cannot call his wife’s name or the name of the daughter who is walking beside him. Words get dammed up inside him. He knows he should not feel bad about these things, but he does.

Ben is one of the main characters of “Stars Go Blue,” a novel by Laura Pritchett. If you haven’t guessed already, he has Alzheimer’s. He has his good days and his bad. He admits to feeling terror about what is happening to him but refuses to have hope, because when you’re hoping for the future you’re not paying attention to now.

Last Thursday night, 149 people signed up to participate in a live webinar at sixteen sites around Kentucky to learn more about the clinical side of Alzheimer’s and other dementias. Dr. Gregory A. Jicha, a professor of neurology at University of Kentucky’s Sanders-Brown Center on Aging, and a panel of 3 other experts took the group through some of the basics.

The topic was “One Size Does Not Fit All: Understanding Dementia Signs and Symptoms,” and Dr. Jicha began by distinguishing between dementia and Alzheimer’s. He went on to explain that dementia is an umbrella term for dozens of variations that affect daily function and quality of life.

“You diagnose dementia,” he declared. “The doctor doesn’t.”

That said, Dr. Jicha stressed the importance of getting a neurological evaluation if two or more cognitive domains are affected, and he showed images of diseased brains to point out the differences between Alzheimer’s, vascular dementia, dementia with Lewy body, and frontotemporal dementia.

In the novel by Laura Pritchett, we never find out exactly which one is eating away at Ben’s brain, but readers learn from his wife, Renny, that they have attended a support group where caregivers are separated from their charges. Renny calls it a “parting of the waters.”

“Ben goes off with the others to make Valentine cards for their caretakers, which is possibly the stupidest thing Renny can think of.”

The group’s facilitator says this gives participants an opportunity to speak freely. That and caregivers’ individual journals are ways to vent their feelings. While everyone else has decorated their journals with pictures, Renny has written THE SAD STORY OF RENNY AND BEN on the cover because she resists anything that seems to reduce her to “childlike behavior.”

While the webinar focused on the facts of Alzheimer’s and other dementias, the novel teemed with a complicated emotional mix of patient and caregiver reactions. Renny, for example, admits to feelings of abandonment by God. She is impatient, angry, and even critical of her husband’s lapses.

“He forgets to fry bacon in a pan and instead puts it right on the stove…Then he’s angry for no reason, accusing me of stealing money from his wallet.”

Ben, whose consciousness drifts between solid facts and frenetic confusion, calls the safe space in which he can recall things the “remembering room.” “It offers a moment of peace. If only he can find it,” is how he thinks of that haven.

When he stares into the mirror, he sees the boy he was when he ran along creek beds. Realizing the loss, “His eyes water from the simple fact that this is him, but not him. The space between those two facts hurts his heart. Like a math problem that can’t be worked out, that has no solution.”

According to the online panel discussion about Alzheimer’s, there is treatment for some symptoms, and there are resources and information available through the Alzheimer’s Association and webinars like the one featuring Dr. Jicha. There is no cure as of yet.

Today, more than 5 million Americans are living with Alzheimer’s, and that does not count the people struggling to take care of them. The numbers are staggering. Since 2000, deaths from heart disease have decreased by 14% while deaths from Alzheimer’s have increased by 89%. The disease kills more than breast cancer and prostate cancer combined.

How fortunate to have some outreach programs, and books that bravely reveal the enormous challenges facing patients and caregivers. Clearly, however, we have not really acknowledged the tsunami of Alzheimer’s that is already crashing on our shores.

More information about upcoming webinars is available at ALZWebinars.org. Caregiver support groups are in Graves and McCracken Counties. Call Joe Evanko, 270-564-4498 in Graves County, and Angie Day, at 618-697-1705 in Paducah.

“Stars Go Blue” was published in 2014 by Counterpoint, in Berkeley, CA. More information is available on her website, www.laurapritchett.com.

Constance Alexander is a columnist, award-winning poet and playwright, and President of INTEXCommunications in Murray, Ky. She can be reached at calexander9@murraystate.edu. Or visit www.constancealexander.com.

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