A Stranger in the House
On November 16, 1983 my husband Don Robinson '26, died of Alzheimer's disease. Don was a writer, a magazine editor and publisher, and an astute businessman. He had a quick wit and a wonderful sense of humor which enabled him to overcome difficulties easily and to enjoy life to the utmost. Imagine his dismay when Alzheimer's invaded his brain and slowly began to destroy the fine mental balance which he and all of us in his family had always been able to count on.
At first it was just little things of the sort that all of us tend to expect as we get older. He forgot words, couldn't complete sentences and got names mixed up. For a while Don's sense of humor carried him through and he made jokes about his dilemmas. By 1980, his periodic confusion and forgetfulness made necessary full retirement from business, but we still had a good life together. Soon his interest in reading passed (he could no longer follow the sense of written words or even television programs) and he began to need motion, constantly demanding that we go someplace out to lunch, down to the post office or the bank, almost anywhere. Everywhere we went, things confused him more, and in his inability to understand what was happening to him, he became angry. My nice calm husband fell prone to explosive rages which centered on no identifiable object.
I longed to be able to explain to him that I understood, but I was unable to do so, for it is one of the terrible misfortunes of Alzheimer's patients that the brain becomes unable to comprehend what is happening to it. No doctor, no minister, no friend could ease the pain of his suffering. Although physically he was still healthy, his brain was dying. He was robbed of the solace of recalling achievements, and the love he had known that still surrounded him.
No longer could he enjoy the pleasure of good company, and friends had been so important to him all his life. He lost track of how to get dressed, yet angrily refused help. Soon he could do nothing for himself, yet the vestiges of his pride prevented him from asking for, or even accepting, the help which he grew to need so constantly.
Don became plagued with fears, and had incessant business worries that he could no longer define. Every thought that came to him disappeared before he could express it. His life became utterly frustrating and his rages against this helplessness became more severe.
I was directed to the book, The 36-HourDay by Mace and Rabins (John Hopkins University Press), which I read with a combined feeling of relief that others had survived what I was going though, and a feeling of horror over what the book made very clear still lay ahead for Don and me.
Our doctor warned me that Don's condition could level off at any stage, leaving him in this awful state of frustration, confusion and anger, and that he could continue that way for another ten or even twenty years, since his health was strong in all
other respects. There was no way to know what Don might do next or to what degree of violence his frustration might carry him before I could calm him down. There was no time for cooking or housework or shopping and the idea of sitting down and relaxing was out of the question.
I couldn't even think the words "nursing home" without being consumed by guilt. Don still knew that I was caring for him. He had become pathetically dependent on me and I know that some of the love I felt for him must be getting through. I couldn't bear the idea of turning his care over to others, yet my own health was crumbling from the .constant tension. Finally, as the winter of 1982 drew to an end, I succumbed to exhaustion and had to be hospitalized for more than a month. Our doctor insisted that the time had come when Don had to be put in a nursing home.
Those were dark days indeed. Don could not accept the move and he was unable to understand even that he was sick, let alone that I could no longer care for him at home. He didn't know where he was, or why I wasn't able to stay there with him. He didn't recognize that one family member was there every day. He lived in lonely torment which was devastating to all of us.
Looking back on it now, I realize that as Alzheimer's cases go, Don and I were lucky. He did not level off. As the months passed his decline continued. One by one his bodily functions were lost, and mercifully, eight months after his admittance to the nursing home, Don died. I found relief in thanking God that my dear man's torment was ended, but I will never recover from knowing that Don died feeling rejected by those who loved him, in a lonely state of mind that none of us could reach.
Absolute diagnosis of Alzheimer's can only be confirmed through brain autopsy, at the time of death. It is extremely important that the families of Alzheimer's victims plan ahead to have a brain autopsy performed in order to have Alzheimer's listed as cause of death on the victim's death certificate. Only in that way can statistics be compiled that will form the basis for more research into the causes and improved treatment of the disease.
For more information regarding assistance and support, write: Alzheimer's Disease and Related Disorders Association, 360 North Michigan Avenue, Chicago, Illinois 60601.
