I am back at home, after a sojourn in the bizarre land of Alzheimer’s disease. My visit there was intended to be short, but grew longer and longer. It was only curtailed by some rather urgent home business, and even now I am thinking that I’ll need to go back sooner rather than later.
During that month, it struck me how normal things became. Anything, no matter how demented, can become normal, if it just lasts long enough and excludes all else, and that is the way of Alzheimer’s dementia. It becomes normal to wake up every night at midnight, and 2:00, and 4:00, and maybe at 5:30 as well to respond to whatever loudly expressed needs arise. It becomes normal to have to remind a man who used to have a too-hearty appetite what to do with toast and coffee. It becomes normal to have to reassure a man who used to be a professor that the people in the TV set aren’t in the next room and won’t be needing a place to stay for the night. Normal also includes attempting to shave one’s sweater, using a toothbrush on a bar of soap, and waking up in bed wearing one’s shoes.
Living with such a definition of normal is exhausting, and it’s well beyond the abilities of a single person to provide care for such an individual for an extended period of time. (I predicted I wouldn’t last a month. I did, but the Real Doctor says I look like heck.) However, the problem is that the definition of normal changes so incrementally and imperceptibly—especially if one’s senses are dulled by a lack of sleep. Because the metaphor lacks a factual basis, I hesitate to bring up the image of a frog in a steadily warming pot of water, but it fits here.
A major point of my visit to the parental homestead was to convince my mother, who is acting as my father’s sole caregiver, that the “normal” she was experiencing was (like boiling water for a frog) detrimental to her health. I did not succeed in this. I think I may have brought it to her attention that the water was unusually warm, a fact of which she was previously unaware. However, the current trajectory, one that has been followed by all too many families in the same situation, is a self-reinforcing decline. The patient suffers because the caregiver can’t keep up, and so he becomes even more taxing; the caregiver, faced with ever more work, tires all the more, and fails to provide adequate care—and so on to an ugly end. Through it all, my mother insists that everything is normal.
Several million people have Alzheimer’s disease. Many more millions of family members have their lives warped by it. There’s nothing that I can add, either in terms of data or eloquence, that hasn’t been covered before. But, a tragedy is a tragedy no matter how many times it is played.
Just now, as I finished that last paragraph, I got a desperate phone call from my Mom—my Dad behaving oddly, and she in a panic because she can’t find his wallet and she’s convinced somebody stole it. I will have to return, sooner than I’d planned. My hope is that she will realize how things are—that the water has gotten too damn hot, and she needs to get out now.
I feel obligated to note that the original point of this blog--to talk about stuff like microbiology and music and gardening and such--remains. However, for the last month I have been consumed by being a caregiver essentially 24 hours a day. I think I played the piano for a total of two hours, and the small amount of reading I did was not focused enough to digest a journal article. Things will remain this way for at least a couple more weeks. I hope that we'll be able to return to the usual menu of Monday Musical Offerings and Friday Flora and interesting microbiology in the not-too-distant future.