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Constance Alexander: Everyone has a friend who has lost someone to a form of dementia

After decades of marriage, couples can finish each other’s sentences, so when one cannot recall the title of the movie last seen, for instance, the other one fills in the blanks. No problem. That’s a normal part of a long-term relationship.
But about eight years ago, Marcia found herself completing her husband’s unfinished thoughts more often. He began suffering from dizziness and occasional agitation, but still there were good days and even better days. The symptoms could be normal signs of aging, nothing to worry about.
Then there was the day she came home from work and found him so absorbed in writing something that he snapped at her when she asked what he was working on. He said, “Don’t bother me,” Marcia reports, “so I just let him be.”
An hour later, he finally showed her the paper, most of it blank, saying, “I can’t do math anymore.”
From there, other things started to happen, but somehow they managed on their own. He cancelled credit cards, but then signed up for more. What he did and said weren’t always making sense. When a nurse practitioner associate of Marcia’s assessed his state of mind using an accepted screening process, the initial diagnosis was dementia.
“I burst into tears,” Marcia says.
A retired lieutenant colonel in the U.S. Army Nurse Corps, Marcia’s distinguished career in health care is summarized in a resumé filled with accomplishments. She knows her stuff but, as she explained in our interview, “You have no idea until it hits you personally.”
As a wife who loves her husband, she was devastated, but as a health care professional she knew there were steps that should be taken. Additional professional testing further assessed the situation and he was eventually diagnosed with Lewy Body Dementia. Prescribed medication helped him some, and things went along pretty well until he began suffering from paranoia.
When she thinks back to 2012, Marcia calls it the “summer from hell.” She laughs ruefully when she describes his deteriorating sense of time – he was either really early or really late. As she continues her account of that sad season, she closes her eyes as if the memory is too painful to share any other way.
He did a lot of walking and would slip away and wander the neighborhood. Once he trekked all the way to the next town on foot, wearing a heavy coat on a sizzling summer day. Someone called Marcia and she drove there to pick him up. “That whole summer,” she said, “I never knew what would happen next, or what I’d find when I came home from work.”
The point of no return was the night she awoke to find him armed, and in a state of extreme agitation. He held Marcia at gunpoint for three hours. When she finally was able to get him to disarm, she contacted the police. Pressing charges was the only way to ensure her safety and his. He was put in jail. She hired an attorney so she could go to court and gain immediate guardianship.
After the arrest, he was in seven different facilities. He was transferred from nursing home-type arrangements to a psychiatric hospital in Memphis. There is no vacancy in our region of Kentucky for a patient with his specific problems, so he now resides in an out-of-state facility 150 miles away.
He has pretty much stopped talking, but he smiles most of the time. The staff where he currently resides tells Marcia he is one of their favorites when she visits him every Sunday. “He recognizes me some of the time,” she says. His weight has dropped from 220 to about 145. He is dying.
How does she cope? It isn’t easy, even for a health care professional. About a year ago, a physician prescribed an anti-depressant for her. “I don’t cry every day now,” she says.
According to the Alzheimer’s Association, more than five million people in America are currently living with the disease, and one in three seniors dies with Alzheimer’s or other dementia. In 2013, 15.5 million caregivers provided an estimated 17.7 billion hours of unpaid care, valued at more than $220 billion. When it becomes impossible to provide care at home, residential care is expensive with Medicare footing almost none of the costs.
Marcia is a real person who lives in Calloway County. I have not revealed her identity to preserve her anonymity and that of her husband. As you read this article, you may think you know her and that is a crucial point. We all know people like “Marcia” who are struggling to make sure their loved ones with dementia get the best care possible. They are fighting a losing battle.
As the first wave of baby boomers reaches retirement age and life expectancy continues to increase, there will be more and more dementia patients, and more and more caregivers with limited options.
Isn’t it about time we started discussing these issues in public?
For more information, log on to alz.org.


Constance Alexander is a faculty scholar in the Teacher Quality Institute at Murray State University. She is also a freelance writer.

To read more from Constance Alexander, click here.

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