Dementia does not care who you are. From President Ronald Reagan to your Aunt Tillie, anyone can fall prey to this insidious disease. Alzheimer’s gradually overrides memory, personality, and emotions.
In his book, The Soul of Care – The Moral Education of a Husband and a Doctor, Arthur Kleinman spares nothing as he describes his decade long experiences as a psychiatrist and husband while his brilliant, talented wife, Joan, succumbed to Alzheimer’s.
Kleinman is, according to his bio on the book jacket, “one of the most renowned and influential scholars and writers on psychiatry, anthropology, global health, and cultural and humanistic issues in medicine.”  Consequently, the first half of the book examines the state of medical care and education in America.
Dehumanizing Medical Education
Like most interns, Kleinman entered the medical profession because he wanted to help people. The ideal of caring gets lost in the pressure cooker of residency experience, leaving many disillusioned. However, rather than let his ideals take a back seat, Kleinman explored, and later, taught, about the ways to maintain caring, even while health care costs escalate and efficiency is the name of the game.
At first, Kleinman adjusted his work schedule so he could remain primary caregiver for his wife in their home. At the beginning stages, Joan’s appreciative, encouraging, “You can do it, Arthur,” fueled his days. Later, he continued to meet his professional obligations with the help of a devoted health care aide. However, one day he could no longer communicate with Joan as she writhed on the floor in a state of agitation. He could only watch, helplessly sliding to the floor himself, to wait until she exhausted herself.
That was the turning point. Joan was hospitalized and put on a new medication regime. She then transferred to a nursing facility with “an experienced and dedicated director and a staff who conveyed kindness, warmth, and humane nursing skills.” Sadly, he added, “I had to use all my professional connections to get her admitted there.”
I hope that soon this kind of facility will become the norm for all potential admissions. Here in Rochester, I do see positive changes. Physicians are beginning to better differentiate various forms of dementia. Delirium, depression and dementia can look very much alike, but may require different treatment. Also, some facilities are providing a more nurturing, inclusive, environment for those with dementia.
Understandably, many caregivers refuse to consider nursing home placement. In Dr. Kleinman’s case, even with his education and connections, he realized he could no longer care for his wife safely or adequately. Her needs exceeded his resources. This is a heartbreaking juncture in the Alzheimer’s journey. Meanwhile, the Alzheimer’s Association offers a range of assistance for caregivers as they care for loved ones with any kind of dementia, not just Alzheimer’s. https://alz.org/help-support
 Arthur Kleinman, The Soul of Care, Viking Press, copyright © 2019
So sad! My brother-in-law, who died a year before my husband, succumbed to dementia. My niece Megan brought her new baby to meet him, and for one shining moment his instincts took over as he cuddled his new granddaughter. A rare quiet sweet moment.
Our mutual friend Judi’s husband Dick suffers from Lewey body dementia, which has caused a steady decline. One day when Dick somehow got past her, she and the police found him on nearby highway 690, thankfully unhurt. Judi had been dealing with Dick herself, with some help from her daughter Laura, but she was able to place him in senior day care for one-two days/week. Since the pandemic much of this went on hold.
Families can become terribly divided by these issues. My husband’s Uncle Bob was married to the loveliest of ladies. Faith developed early onset dementia in her fifties, which revealed itself at a family picnic. The normally smiling, unflappable Faith could not find her purse, and boy, was she upset! Eventually Bob had to place her at Van Dunn, a skilled nursing facility, where he visited her daily and even became a volunteer despite Faith not recognizing him. Eventually Bob became friendly with Faith’s hairdresser, Alma, only to face the disfavor from several of his six children. Sadly in Bob’s mind, his dearly loved Faith was dead to him before her earthly body had succumbed. Thankfully upon Faith’s death Bob was able to resume good relations with his children; he and Alma married. They have both since died, but the sadness and hopelessness of their story lives on in my mind.
How devastating and sad. No one should have to face this without help from the health care industry. That’s why I studied caregivers when I went to Alfred for my BSN. I believed,and now more so, that caregivers are at such mental and physical health risk, they should be considered a patient group, like the cardiac patient. There should be proven interventions just for them, that are available to all. The problem is, caregiving is not considered a disease and therefore lacks a DSM category that could trigger insurance coverage.
Also, most caregivers are women, who quit working to care for the family member. They lose all those working credits that determine their social security amount, and so suffer poverty (unless they can take their husband’s SS amount if widowed). Caregiving should count as WORK because it is, and it keeps the nursing homes from bursting at the seams. I KNOW, because I did this, how to estimate caregiving hours per week if the government needed proof or a basis to adjust SS payments.
Hi Sue, what a fantastic learning article. So interesting. Keep up the good work friend. Take care and God Bless you.
Thank you, Adrienne.
My mother and closest friend had Alzheimer’s disease. My mother was kind, loving, and had a quiet nature. If you did something wrong, you got the “look” and that was all it took to straighten up. She became progressively more confused, oppositional, and frightened as her disease progressed. The day she didn’t recognize me anymore was also the day I got the “look.” After several attempts to keep her at home, she was placed at St. John’s Nursing Home where she lived for six years. My father feed her lunch and dinner almost every day of those six years. It is hard to recall this time in my life and it brings back such sadness. You have to have a strong faith and sustained guidance from God. If you are a caregiver in these circumstances, get help early! You need to know what resources are available and how best to cope with the disease as it progresses and someone with Christ in their heart…..someone like Sue LeDoux.
Yours was a painful journey, Sheila, and the pain will always remain. Caring as well as we would wish for loved ones in those situations is beyond most of our pay-grades.I don’t think it’s possible without God’s strength and the help of others. Thank you for sharing your story.