A Caregiver's StruggleBook - 2011
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 JimOCOs 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 OCo from physicians to orderlies, from agency administrators to certified nursing assistants OCo 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 elseOCOs caregiving experience might be easier. Caring for Jim was exhausting; perhaps someone elseOCOs 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 JimOCOs voice, to maintain his dignity and to care for him and for me."