Familiar places like one's own home become foreign and difficult to navigate. A family get-together turns into a confusing jumble of sounds. There's a nagging fear of being belittled or cheated. Everyday items like eyeglasses are always being misplaced.
Alzheimer's patients experience such frustrations as the disease begins to eat away at their cognitive skills.
To help others understand their frustration and despair, social workers at the Duke University Center for Aging in Durham, N.C., asked some patients to keep journals during the early stages of the disease.
Cary Henderson, a former American history professor at James Madison University in Harrisonburg, Va., was diagnosed with Alzheimer's when he was 55. His physician first thought he had a rare disorder that can cause Alzheimer's-related symptoms but can be surgically corrected. Henderson's wife, Ruth, feared otherwise. At her urging, the neurologist removed a tiny amount of his brain tissue and performed a biopsy, confirming her suspicions. Henderson, thus, is one of the few living patients with an absolutely confirmed case of the disease.
Henderson kept his tape-recorded journal in 1991 and 1992, when he was in his early 60s. Portions of the journal were transcribed by Ruth and published in “The Caregiver,” the newsletter of the Duke Family Support Program, in 1994. Henderson today is in the late stages of Alzheimer's and lives in an assisted-living facility. His complete journal will appear as a book, Partial View, to be published this fall by Southern Methodist University Press. Following are excerpts:
“With Alzheimer's you just know you're going to forget things, and it's impossible to put things where you can't forget them because people like me can always find a place to lose things, and we have to flurry all over the house to figure where in the heck I left whatever it was . . . It's usually my glasses. No matter where I put my glasses, they don't seem to be in the right place at the right time. You've got to have a sense of humor in this kind of business, and I think it's interesting how many places I can find to lose things.
“With Alzheimer's people, there's no such thing as having a day which is like another day. Every day is separate, and you don't know what's going to happen in any one day or any other thing like that. It's as if every day you have never seen anything before like what you're seeing right now. It just never will be the same again. But you can't beat Mother Nature.
“One of the things, I guess, people like myself with Alzheimer's put up with is the fact that other people have to put up with us. I think this disease does make us kind of irrational -- and sometimes it's out of fear and sometimes it's being left out of things . . . I do think it's bad that we sometimes become almost afraid of ourselves and almost afraid of our caregivers and family . . . I think for a lot of us the feeling of being cheated or belittled and somehow made jokes of, I think that's the one thing that is among the worst things about Alzheimer's.