Dignifying Dementia: A Caregiver's Struggle

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 Jims 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 - from physicians to orderlies from agency administrators to certified nursing assistants - 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 elses caregiving experience might be easier. Caring for Jim was exhausting; perhaps someone elses might be less draining. Watching someone lose his or her mind and body is not polite. It is rude and mean-spirited. Dementia brutalized Jim and stole the love of my life from me. It altered him us and me. 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 Jims voice to maintain his dignity and to care for him and for me.