Two nights ago I came down with pneumonia. At the time I thought I was at the tail end of a virus, and life was going full tilt. Book fair, the last major event on my calendar for the next couple of months, had just kicked off. Dad had gotten new batteries and a new charger for his hearing aid, but his ranting and repetitive speech had gotten worse. Mom had taken to sleeping in the office, because his constant shuffling was keeping her on edge and she wasn't getting any sleep. We set up her motion sensor and her tablet next to her bed. Every time the motion sensor went off, she could glance at the tablet (we set up a security camera on Dad's dresser pointed at his bed) and see if he was actually getting up. If not she could just roll over and go back to sleep. If he was getting up she would walk across the hall and get him to the bathroom, and inevitably, if it was around midnight, change his pullup. If this sounds like back to the infant days it was, but Mom actually said she was getting more sleep this way than before.
Then on Friday night Dad figured out that Mom was not sleeping in the same room anymore and didn't like it. He insisted that Mom come back in, then proceeded to keep her up by playing with the hose of his cpap mask. At midnight when Mom tried to change his pullup he had a tantrum, I could hear him yelling through the walls. This tends to happen every time he wets himself. It's in the middle of the night and he, thinking he has already peed (because of course he has), just wants to go back to bed. There's a standoff that seems to last forever, until Mom finally persuades him to let her change him. Sometimes if it seems to be going on too long or I hear some escalation I go and lend a hand. Other times the tantrum must be of very short duration because I sleep through it. But Friday night was a kicker. After getting changed Dad refused to go to bed without wearing his baseball cap. He wears his cap all day, and it's got a label with his name under the brim for daycare. At night he has been wearing a knitted cap to bed, but that night he said he wasn't going to wear it anymore, he was going to wear the one with his name on it. Mom wouldn't let him wear it because she thought the clip in the back was going to give him a headache. And so at 11pm they were going back and forth until finally I went in to see what was going on, and I said, "you might as well let him wear it, if it hurts he'll let you know." Maybe.
Saturday Dad spent the whole day talking about how the dog should have been fed, why didn't I feed the dog. The only time he stopped talking was to eat his meals. Saturday night he continued talking and it was quite a job getting him to bed because even though he kept insisting he wanted to go to bed he wouldn't move from his chair, started screaming when Mom put in his eye drops, finally got to bed, but kept talking. I thought I was hearing him all night, and that's why I couldn't get to sleep, but it finally sank in that I was extremely uncomfortable, had to keep getting up to go to the bathroom, and couldn't get warm. Finally at 5am I just broke down, waking Mike. He got up and got me one of my winter caps, told me I might be getting a fever again and I should take some Advil. By 7am I had a temp of 102.5, and it was clear another visit to the urgent care was in order.
At the urgent care the PA listened to all of my symptoms starting with the first time I got sick, and said, "Well, one of the things that masks itself as flu is pneumonia. Now, your lungs sound clear, but a lot of times with pneumonia the lungs will still sound clear, and since you've had this fever for 5 days now I think we'll play it safe and get an X-ray. If it's not pneumonia it's probably flu, and you're on day of a 5-7 day course, so there is an end in sight." Mike asked the doc what people do if it's the flu, and she said, "Well there's Tamiflu but if you don't get that in the first day it really doesn't do any good, so you'll just have to ride it out." At this point I'm thinking, I don't get pneumonia, I've never had it, I probably don't have it, so I'll probably just go home with no answers except the usual recs to rest, drink fluids, etc. So I was really surprised when the doc came back later and said, "Well you have pneumonia, so you're going to be out of commission for a few days. Do you work?" I said no, but....then Mike jumped in and told her I volunteer at school and I've been working this week for the book fair, and I was supposed to work all next week. And she said, "Well book fair is going to have to go on without you. I wouldn't go back until at least Thursday. And usually I say a week. If you wanted to go in as early as Wednesday you could but honestly you're not going to have the stamina to get through it."
The rest of the day was spent with me in bed, listening to Dad talk endlessly next door. I remember it was blessedly quiet after lunch and I found out later it was because Mom kept him downstairs because she didn't want him to disturb me. At 8pm they were having another standoff during bedtime routine and he was yelling, screaming, howling. You would've thought Mom was pulling out his toe nails, when in fact she was doing nothing. I finally went in and found him sitting in his chair, insisting he wanted to go to bed, but refusing to get up. Mom wanted to change him to his nighttime pullup, but he didn't want to go to the bathroom, he wanted to go to bed. His shirt was all wet from spilling water when taking his meds, but he wouldn't let Mom change it. He did let me change it though, and stood up so we could get his pants changed.
Mike and I talked later that night, re-visiting the question of whether we are really equipped to take care of Dad at home. We talked about my busy schedule, and how normally this would not be a problem, but with the added issue of Dad I'm not getting a whole lot of sleep, which probably had something to do with me getting sick. We also talked about how all it takes is for one of the 3 rational adults to be put down even temporarily, and suddenly the household is scrambling. Mom is trying to get Dad enrolled at the new daycare. If he does well she wants him to go 5 days a week, but Mike is skeptical that even in that rosy scenario she will be able to handle him every night. He is just getting unmanageable. I said I would call his psychiatrist's NP and talk to her about whether we need to give him more meds, or different meds. I told Mike that even if Dad were to go to a memory care facility, at some point they would call us for permission to medicate him because they would not just leave him to be so unmanageable. The nonstop talking and yelling wouldn't work and would probably upset the other residents.
And then there are the kids. It's really bothering them, his constant talking while they are trying to eat. If he were just talking they probably wouldn't mind, but he gets so emphatic, and he's talking in Taiwanese, so not only is it incomprehensible, but it sounds vaguely authoritative. When they are playing computer game, he'll come over to watch, lean over their chair, and say the same thing over and over. Yesterday he was hanging on to Elfgirl's chair, and suddenly we had an intractable situation. I couldn't get Dad to stop talking or come away, but Elfgirl couldn't stand it that he was hanging on her chair talking "nonsense," over and over. Sparky saved the day when she gave Elfgirl her chair and stood behind her sisters to watch the rest of the game. This morning I was relieved to see them off to school, where for several hours a day, life is predictable, runs the way it's supposed to, and all the adults are rational. I feel this is a lot for them to live through, and even though there's eventual value in it, it's very hard in the present moment. I wonder how they can get to sleep at night when Dad is on his tirade. Even though no one comes out to complain or ask what the yelling's all about anymore, I'm sure they can hear him. The other day he took a bite out of a piece of chalk that was lying on the table, and later tried to take a bite out of a rock, so now the kids have to be doubly careful about what they leave lying around and where. At some point will they become numb to all this, or will they get resentful?
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