“I don’t want to become a burden”


I found some notes that my late husband must have written soon after receiving the diagnosis that he had dementia, probably Alzheimer’s disease. It was written by hand, was not terribly clear, and it took me some time to decipher it. This is what he wrote: 

“I know that I am going to have to be dependent on you at some stage of my illness and to me it seems morally irresponsible. Part of my fear is my personal revulsion at the thought of having to be fed and dressed by someone else some day. You must know how much I love you and I want you to be happy and live a full life without the demands of caring for me. Simply thinking about the pain you will experience is hard for me to contemplate. I don’t want you to feel isolated or resentful. Maybe I am over-reacting as I know you will do what has to be done. You have often told me that having lived together for so many years, 51, I think, and in a good and loving relationship, that caring for me will simply be a continuation of our loving relationship. I know that I will eventually lose my capacity to drive and what man likes to be driven by his wife all the time? Then, I will probably lose my ability to handle our financial affairs and am aware of how you dislike dealing with the bank. Later, I might be unable to speak coherently and worst of all, I worry about what will happen to my intellect. Alzheimer’s is truly a terrible illness.  When people think of an Alzheimer’s patient, they imagine the blank face of an old person, unable to recognize family; someone who wanders away or slumps in a wheelchair, a person drooling or lying in bed like a vegetable. People tend to doubt the diagnosis of someone who only has mild symptoms in the beginning stages that aren’t too noticeable. Right now I am suffering from intermittent confusion and difficulty finding words. I haven’t forgotten how I lost my bearings in Prague. I have read about the taboo surrounding Alzheimer’s. Thank you for your understanding and constant support.”

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