My parents are old. I feel a little awkward using the word “old,” as it seems to have picked up some baggage during its life, but my folks are north of 75. My mom is OK , but my dad is quite infirm: a spinal fusion screwed up his posture, necessitating the later replacement of two knees and one hip. What joints are not metal are arthritic, and they all hurt. Prostate surgery has left him incontinent, and Alzheimer’s has robbed his mind. He’s like a ship, proud in my memory, but whose hull is rotting, engines are almost dead and whose captain has fled.
Anyway, I’m with my folks for a few weeks. I am mainly here to take care of my dad for a while, so my mom and her brother can attend a college hiking club reunion. My mom has been, by her own insistence, my dad’s sole caregiver as his condition has worsened over the last decade. It’s my reckoning, as well as that of my brothers, her brother, her doctor, and several family friends, that this is killing her. The fatigue and stress of being a caregiver is eroding her mental and physical capabilities. Nonetheless, she remains adamant that this is what she wants. I am giving her a few days respite—the first she’s ever really allowed herself—to attend the reunion, and my hope is that it will clear her head somewhat, and allow her to realize that she needs assistance. In the meantime, I am developing a better appreciation of what life with Alzheimer’s is like. I have been my dad’s caregiver for less than a week, and if I were in my mother’s position, I wouldn’t last a month.
Though I titled this “Life with Father,” this really is life with Alzheimer’s. Aside from the very faintest glimmer of rascality there is none of my dad left that I can detect. His personhood has been replaced by the stereotypical attributes of Alzheimer’s.
There are patterns that occur every day. He wakes up after 9:00. My mom usually wakens him, but I am choosing not to do so—sleep is good, and I have no doubt that he is happier in sleep than awake. The day starts with a trip to the loo: it takes about twenty or twenty-five minutes for him to walk down the hall, then another few minutes of argument to convince him that he should really sit on the toilet. Over more or less continuous objections, his diaper is changed and clothing is put on, hands are washed, and face is shaved. It takes another ten minutes to walk from the bathroom to the breakfast table.
“Walking” (as my father does it) requires a walker and vast reserves of patience. As noted, his ship’s motors are no good and the captain has abdicated, so each step requires a minute (mostly due to severe arthritic pain; my mom believes that use of any sort of painkiller, from aspirin to heroin, is a sign of moral weakness), and after each step he needs to be reminded to take another in a particular direction. The soundtrack for one step of such a walk sounds like this:
“What about the…(waves hands at a countertop in a vague manner)…?
“Over here. How about another step?”
“Allright.” (doesn’t take a step; looks behind himself)
“You have to take a step now.”
“Are those people behind us going to…(waves hands as if counting people in a crowd)…?”
“Take a step. Keep moving. This way, please.”
“we just…three…need to keep three channels open.” (rocks back and forth, winces in evident agony, lurches forward)
The day continues; after breakfast, my dad typically dozes at the table until about noon. Then, it’s time for another trip to the loo, and lunch. Per doctor’s orders, I try to get him out of the house for a short walk after lunch. After that, another trip to the loo, and a nap (or at least a period of reduced consciousness).
A reliable part of the daily schedule is “sundowning.” Around 4:00, the crankiness and anxiety start—constant questions about what’s going on, who is present, why somebody is trying to swindle us, whether there will be enough room for all the people who are here, and so on. This lasts through dinner, until about 8:00. It’s four hours of nonstop angry anxiety, and it’s nearly impossible to get anything done while it’s going on. It’s somewhat like dealing with the world’s crankiest two-year-old, but society doesn’t demand that we honor and respect two-year-olds. Eventually, things calm down, and the process of easing into bed (which takes about 45 minutes) can finish up by 10:00.
This daily schedule is a rough guide; Alzheimer’s disease guarantees that every day is uniquely annoying.
Yesterday, my dad had contrived to remove his diaper during the night, soaking the bed. The sundowning was particularly agitated, but more anxious than angry. Every two minutes would bring a nervous question about whether there was enough room for all the people in the bathroom to get through the door (I’m not sure, but I think he may have thought that the figures on the television were real people in the next room).
The day before was characterized by obstreperousness. My dad needed to go to the bathroom, but wouldn’t get up to do it; after getting up, he wouldn’t walk; after walking, he wouldn’t enter the bathroom; after entering the bathroom, he wouldn’t take of his trousers; he wouldn’t sit on the toilet, wouldn’t wash his hands, and so on. Everything was a struggle. It takes huge reserves of patience to deal with this, and not a little bit of creativity to persuade my dad that he really wants to do what he should do. My mother is one of the most patient souls on the planet, and I am not surprised that I have seen her utterly lose it with my dad under these circumstances.
The day before that was dominated by paranoia. We went out for a walk around 4:00—sundowning time—and by the end of the walk he was convinced he’d been swindled. When we got home, he was sure that everything was fake and that his stuff had been stolen. He was alarmed that he’d have to pay for his dinner, and that he’d have to pay to get home, and that he had no money because it was all stolen.
There’s been some debate recently about the value of screening for prostate cancer. On the one hand, a PSA test does reveal the presence of a lethal cancer that can be treated. On the other hand, the treatment has a high probability of unpleasant side effects—such as my dad’s incontinence—and the cancer usually moves so slowly that it kills the very old. The Real Doctor tells me that medicos call pneumonia the “old man’s friend,” since it brings a relatively rapid death to a frail body tired of life; prostate cancer may be looked at the same way. There is no really good way to die. I have to say, though, that Alzheimer’s disease is teaching me that there are really bad ways to live.