Dignifying Dementia: A Caregiver's Struggle
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From the Prologue:
Diagnosed with dementia in 1997, my husband, Jim, lived at home during his illness and died there in January 2006. I wish this story were fiction, but it is not. DIGNIFYING DEMENTIA is both a love story and an attempt to reach out to others who are living through or who will live through a similar tragedy.
It is written in the hope that others might benefit from what I learned as the caregiver of a dementia victim. Only then will Jim s cruel affliction serve some purpose, because it might help others feel less lonely, bewildered, angry or frustrated than I did, shorten the dreadful learning curve, or encourage others to ask more questions and make fewer assumptions. And because it might remind members of the health care industry that dementia victims and their loved ones are human beings who deserve respect, kindness, empathy and patience, so often lost in our fast-paced society.
The diagnostic process I describe was painful and disappointing; perhaps someone else s caregiving experience might be easier. Caring for Jim was exhausting; perhaps someone else s might be less draining.
This is not a medical text; it is the story of our experience with dementia and the lessons I learned as I tried to be Jim s voice, to maintain his dignity and to care for him and for me.
to use for each trip, I should have reveled in the fact that he knew how to dial and get the answer to his question; instead, I was weeping. I couldn’t deny it any longer. Something WAS very wrong with Jim. He was unable to retain information and avoided interaction with people other than me. He asked me to buy train tickets for him and to talk to the stationmaster. If we took the train together, he handed me the tickets to give to the conductor. I bought the movie tickets. I asked for programs
hurt. Nothing else seems to be working.” I called the unit and explained Jim’s behavior to the social worker in charge. He told me that Jim would stay about a week to give the staff an opportunity to evaluate him and to determine what might work. I didn’t like the idea of leaving him in a strange place at all, much less for a week, but our neurologist had suggested it might help, so I decided to try. I desperately wanted to believe that the physicians in the unit could help, but I should have
making a difference in education. One piece of advice he gave me when I stepped into my first administrative job was, “Do everything you can to help teachers improve, but be prepared to make a decision one way or the other the very first time you observe them.” He had a beautiful voice, was soft-spoken and mild-mannered. Only once do I recall his losing his temper at work. Those of us who heard his raised voice were stunned. Jim Tierney shouting? I mustered the courage to ask him what had
bend his knees, to support his weight, or to lift himself to a sitting position. He would put a book or washcloth on his head like a hat, or position his glasses so that both lenses were on one side of his nose. He choked on food. That he couldn’t write hit me when I was cleaning a closet that had some boxes of papers and cancelled checks. When I opened the boxes, I was heartbroken to see Jim’s handwriting on them, and then I found some file folders on which Jim had written “Social Security”,
support him; he slept 24 hours, didn’t eat or drink and had his first bed bath. I filled his standing prescription for Amoxicillin and realized how fragile his health was. Would he survive without the antibiotic? Would the next bug kill him? Would Amoxicillin be enough? What are we fighting for? Has he had enough? Is he exhausted? Is this the quality of life he wanted? Is this the life that he wanted for both of us? But when he smiled at me or at his food, or clapped his hands in the middle of