Alzheimer’s: Given that we are in the neurologist’s office at my request, I should not have been surprised –no, not surprised, floored, shocked — by the diagnosis. But I was. The doctor’s visit was prompted by a cluster of seemingly small incidents. First, my husband wearing two different shoes. Well, anyone can do that, so it’s not a big concern. But, as he has the elegance of Fred Astaire, and manages to look like a fashion plate in fishing clothes, it is a bit troubling. But one laughs, and makes a joke of it, and he changes to a matching pair. The next incident is more worrisome. When we are home, our routine is I make breakfast and dinner, and he makes lunch. But one day, there is no lunch and when I ask if we are going out to eat he replies that he has already eaten, that he had lunch with John L. As John L has been dead for several years, I am thrown but I don’t say anything, just go and make a sandwich for both of us. He eats his and later in the day comes to me and says, “I think I did something foolish earlier today”. I hug him and tell him that is not foolish to think so vividly of a beloved friend. Now I am more watchful. The third incident is a telephone call from the bank, saying that we have a quite considerable overdraft. That is so unlike my Princeton economics educated husband that it is very clear that there is something wrong.
Soon we are at the neurologist’s office where a battery of tests are arranged. When he takes the cognitive ones I am in the room and I realize for the first time how dependent he has become on me. Asked something, he looks to me. The doctor suggests that I sit behind him. Challenged to list alphabetically four legged animals, he gets to F, and then comes up with not a four letter animal but a four letter word. That is the beginning of his many attempts in the coming years to turn the subject away from what he cannot do with a caustic remark or humor. The cognitive tests are followed by various scans and then I find myself standing in the doctor’s office, hearing those words, early dementia, first stage Alzheimer’s.
I dont believe it. I have a picture in mind of the Alzheimer’s patient, angry, untidy, unable to feed him or herself, not recognizing people, wandering off mindlessly. My husband is not like that. Not anything like that. Yes, there are these troubling incidents, but he is getting older, surely this is just aging. And if it isn’t just that, then perhaps a small stroke, or some manageable take-this-pill and it will all go away treatment. Please.
I fail to recognize that my mental portrait of the Alzheimer’s patient is someone in the last stages: the first stages of the disease do not look anything like that. And so, I begin the doctor search. One, two, three, all concurring. And my husband becoming more and more tired of the routine, dressing, undressing, being poked and prodded, asked to memorize remember several different items, to draw a clock. At last I realize that I am doing this not for him, but for myself. I want the answer to be different. Clearly, it will not be. Like it or not, and I don’t, I have to accept it.
And so, my beloved husband became one of the five million Americans diagnosed with this thief of a disease. And one of the first things I learned is that the number is grossly inaccurate. That’s only the United States — the numbers affected worldwide would be staggering. What’s more for every human being diagnosed, there is a circle of others — partners, family, friends, employers, employees — who are also victims, robbed of memory and relationships. Society recognizes the caregivers, and their heavy burden they bear. But others too pay the emotional, physical and financial price — children, becoming parents to their parents, grandchildren, deprived of that special relationship, partners who see years of intimacy vanish as if they never were, and society itself, robbed of all that brain power, burdened by the cost of care.
And so, seven years ago, I began my long journey, what Nancy Reagan has described as the long goodbye.