I wish I had a dollar for every time my mother's or my mother-in-law's bad behavior prompted a nurse or a CNA somewhere to tell me that. Mom curses at me and tells me I'm ugly and stupid -- the nurse sighs sympathetically and says "that's not your mother, that's the disease." Meaning Alzheimer's. My mother-in-law kicks, screams, spits, scratches and bites when the urge strikes her. And the CNA helpfully tells my sister-in-law "It's not your mother. That's the disease."
Surely it cannot be that only NICE people get Alzheimer's. Because, as my sister-in-law told one gaping-jawed CNA "That's not the disease, that's my mother."
Believe it or not, I really understand how devastating it can be to have a cherished and beloved parent who has always treated you with loving kindness suddenly turn on you with threats and violence. I don't "get it", I suppose, because I haven't had that experience. But it is a commonly written-about experience. New York magazine writers who have lost a parent to Alzheimer's can wax eloquently for a few thousand words about how their wonderful, thoughtful and beloved parent lost first the memories and then the personality that made them so wonderful, thoughtful and cherished. But for my husband, my sister-in-law and me, the experience is quite different. The parent who terrorized us and beat us as children, judged and condemned us as young adults and treated us to screaming and manipulation were we ever unwary enough to darken their door as responsible adults isn't a commonly journalized theme.
I've had two and a half years of a loving, positive relationship with my mother -- two and a half out of 56. It's a wrenching loss to realize that's gone forever. But I didn't really have a chance to get used to it or take it for granted. No one ever talks about this experience.
I'm constantly amazed at how many people -- in this case, my GYN -- judge me for not bringing my mother into my home to take care of her. Or for not visiting her more than a few times a year. They don't understand, but they're ready and willing to judge. My mother is a thousand miles away; it costs me nearly that many dollars every time I visit her. My sister-in-law gets the same cold stares and incredulity from strangers who are hearing for the first time about her experience dealing with a parent with Alzheimer's. Strangely, no one judges my husband. But that's another essay.
To the student nurse who looked askance at my sister-in-law when she did visit her mother after a few months respite from the constant crying, screaming and demands: Sometimes there's a reason these "darling" old people don't have very many visitors, and it isn't that their children are selfish or ungrateful. Sometimes it's self preservation. To the GYN who couldn't understand how anyone could leave their parent in a "home": when that parent kicked you out of their home when you were 15 or made that home so frightening that you left willingly at 17, the last thing you want to do in their "golden years" is welcome them into yours.
And to anyone who has ever said to me or my husband that "It isn't your mother, it's the disease": Sometimes it isn't the disease. It's my mother.
