My 91 year old father has had vascular dementia (usually identified under the larger tag of Alzheimer's though different in many ways) since 2000. After failed attempts at housing my father in various facilities -- assisted living, then a nursing home dementia ward where they would only keep him if he was drugged due to his agitated behavior--I have been taking care of him for 7 months in my home. I'm 48 and single and have given up my job and financial security to do this, though I did not realize I was doing that at the time I made the decision. I just felt I needed to try to find some peaceful place for my father to live his final days.
My father no longer knows me, rarely recognizes my mother and lives pretty much in his childhood years. He did not even remember the home he designed and built (he was a carpenter) which is still our family home and where my mother lives. I often wonder, does he know who he is?
While there are good moments, it has been-- and continues to be--a difficult journey. The most difficult aspect is I feel I am taking care of a stranger and that we are "Invisible" to so many others. Friends, relatives, even my mother and other siblings, keep their distance. No one wants to "see" him in this state (he is generally very healthy other than the dementia). The greatest gift has been home health workers and a paid caregiver who keeps us going.
I am not against finding a "cure" for Alzheimer's but it seems too many focus only on the early stages and treatments when many of us are struggling NOW to care of a person in the later stages in Alzheimer's. We have few advocates to help us understand what is going on, and even less any focus to help the patient.
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