A Little Sick
December 12, 2008
Holidays are a balancing act with Grandpa. There is always the ever-present thought that this one may be his last, and so there is the desire to have him where everyone can see and enjoy him as much as possible. You want those happy final memories. But then there is the present reality that Grandpa cannot cope with large gatherings. It is utterly overwhelming to his now crippled mind. Anything more than a slow, nearly monosyllabic, two-way, or one-way, conversation is more than his mind can grasp. A room packed with people noisily talking and laughing is unbearable.
The balancing act on Thanksgiving meant that Grandpa was very happy to see everyone arrive (he knew they were family, even if he didn’t know exactly who everyone was) but after fifteen minutes–about how long it took the majority of guest to appear–he had experienced enough. He crawled across the living room floor to poke and prod and examine a strange object in a chair (said object happening to be a very awkward grandson) only to give up in perplexity. He was then helped back to the couch, where he promptly fell asleep propped up in the warm crook between two relatives. The solution to being overwhelmed is to either shout and agitate, or else shut down and fall asleep–and he chose the latter.
Lunch followed shortly, at which point I got Grandpa to a quiet location with only a few dinner companions who knew enough to eat quietly and not distract him from the difficult task of dinner. After lunch I wheeled Grandpa back to our bedroom and shut the door. By this manner he survived. As the afternoon went on he agitated some over the loud talking that drifted through the door, the strange thumps, and the baby cries, but it was not enough to get him worked into a fit. Any relative who wished to visit quietly could come in and sit with Grandpa, but basically fifteen minutes of everybody was all he needed, or could handle.
I was pretty pleased with the success. Not only did it seem like everyone else had a good time, Grandpa appeared to have also had as good a time as he was able. Even more importantly, the excitement did not end up making a very bad time for Grandpa.
But the flush of victory did not last. Promptly following the Thanksgiving holiday, Grandpa got sick.
Grandpa caught a mild cold from me. I had suffered a very mild sore throat, and some mild congestion. Physically, Grandpa did not appear to suffer any worse–in fact, his chest congestion was nowhere near as bad as he sometimes spontaneously gets with a random fit of emphysema. Nonetheless, it turned into a string of very bad days. Grandpa is at the state in his Alzheimer’s where even a little bit of sickness, tiredness, (or both,) has a dramatic, even frightening, decrease in his mental abilities. It makes one ponder how thin a mental thread still keeps him soundly anchored.
Everything started in earnest Friday, the day after Thanksgiving. His nose was running like a faucet, and he was cranky. (Imagine a baby with a cold, and you have the general idea.) By suppertime he was pretty much slouched over sideways in his wheelchair, snot making a regular appearance at the end of his nose while he muttered vaguely dissatisfied and irritated things at the world at large (and thus not eating his supper). I commented to Grandma that tonight was going to be a bad night. I could tell Grandpa was feeling out of sorts, and when he is feeling out of sorts that often translates into a very bad night. You get a feel for these sort of things.
When I put him to bed he immediately began to fuss (a bad sign–if he is in a proper state he typically falls asleep almost instantly) but at that point I was so tired that I got undressed, climbed into my own bed, put on my ear-plugs, pillow over my head, and actually managed to fall asleep. About midnight Grandpa’s low grade muttering and fussing with his blankets escalated to the more insistent, “Ma? Hey, Ma?” at which point I woke and knew for certain we were in for a very un-wonderful night. Again, if you’ve ever had a sick baby in the middle of the night, you have a pretty good picture. Grandpa had an undefined vague state of miserableness which kept him from sleeping, and so once he got the ball of sleeplessness rolling it just snowballed from there.
At about 1:30 I decided to cut my losses. I moved Grandpa over to the overstuffed chair beside his bed where he could sit more comfortably (and hopefully fall asleep) and I left the bedroom to go lay on the couch where hopefully I could sleep, or at least rest better, in the absence of Grandpa’s insistent noise-making. But the situation continued to go downhill. By this time I had been thoroughly awakened, so it took some effort for me to fall back to sleep. Eventually I did, sleeping fitfully for maybe an hour. I woke and found that Grandpa was still agitating, and in fact his volume had increased. I went to check on him, then went and laid back down on the couch.
And Grandpa’s volume continued to increase. At this point we’ve passed 3:00 in the morning. I’m thinking, “He is going to be terrible come the day. This is going to be really bad tomorrow. I wish he would fall asleep,” as I lay there on the couch. Meanwhile, Grandpa keeps up his litany, not incessantly, but erupting at probably precisely the moment when he begins to feel tired so as to make sure he won’t fall asleep.
“Ma? Hey, Ma!”
“MA? HEY, MA!”
“MAAAAAAA! HEEEEY MAAAAAAAAAA!”
The bedroom door is shut, and I’m down the hall in the living room wearing ear-plugs and I can still hear him clear as day. For a man nearing his eighty-first birthday and growing rather frail he still certainly isn’t lacking in vocal power. I get back up and go to check on him, wishing I had some brilliant (easy) solution that would make him settle down long enough to fall asleep. It’s heading on toward 4:30 in the morning and if he has slept at all during the entire night it has probably been no more than an hour. You’d think someone sick, and that old, would have run out of energy a long time ago. Unfortunately, I’ve already learned from past experience that there is a certain preternatural energy that takes hold, almost like a drug, that only burns out after one full night.
“Grandma’s asleep,” I say grumpily to Grandpa. “What do you want?”
“Well, uh, I’m feeling nervy,” Grandpa announces, perhaps making the understatement of the night. With one word he rather brilliantly summarizes his condition.
I feel at a loss as what to do. For a moment I consider leaving the bedroom light on in the hopes it might make his “nervy” feeling go away, but I know the chance of that helping is almost nil. The nervy feeling is coming from within Grandpa, a vicious self-feeding cycle of unease that comes from sitting up in the middle of the night for hours on end. The best solution would be to sit down with him and hold him in my arms until he relaxes and falls asleep. But I am feeling too grumpy and tired. So I mumble something about going to sleep, and leave again. I think this proves that I am not a mother, who would have been kind enough (and smart enough) to sit down and do the hug and come off a little better for it.
I lay on the couch, wishing I had the ability to sleep like a rock, and sometime around 4:30 Grandpa finally falls asleep. I went back to my bed. By 8:00 Grandpa was awake for the day.
Grandpa paid for his little stunt. I’m still fairly young and can bounce back from a bad night pretty quickly. Grandpa cannot, and his all-nighters are perhaps the most self-destructive thing he does (but try explaining that). What followed was three days where Grandpa hardly ate or drank. He was like a man stupefied. He sprawled where he sat. He drooled. He stared blankly. What strength he had was spent that night, and like a druggie coming off a trip (not that I’ve seen such a thing but let’s not ruin the analogy) the next several days were nearly hellish. Not because he scribbled on the walls and chewed on the chair legs, or anything like that. It was more like the opposite. We had no repeat all-nighters–he hadn’t the strength–but during the day he was in mindless shambles. When he wasn’t a nearly comatose sack sprawled on the couch, he was shouting for people living and dead, real and imagined. And he wouldn’t eat or drink at meals. It was exhausting. Not so much physically–because there was practically nothing I could do for him–but emotionally and mentally it was very hard.
It is deeply distressing on a very fundamental level when someone in your care will not eat or drink. You feel like a failure, not matter how much you tell yourself it isn’t your fault. I wheeled him to the table and he would eat nothing. It was as if he didn’t recognize his food, or didn’t care. It was terminal apathy. I would try to feed him, or give him something to drink, and he would refuse to open his mouth or else turn his head away.
The experience sucked everything right out of me. After a session of trying to feed Grandpa and ending with him not eating and not drinking, I felt like I wanted to go back to my bedroom, shut the door, and lay on my bed staring at the ceiling, blanking every thought and feeling out. How many days could this go on? The feeling of futility and helplessness made me want to give up and walk away and yet I felt compelled to go back the next meal, to try. There was absolutely nothing I could do. I couldn’t pry his mouth open and force him to eat or drink. But to not even try was like giving up on Grandpa. So I would gently prompt him, and wallow in my own state of powerlessness and the general sense that everything was falling apart at once. It was like watching someone who had given up the will to live, and that is a very unhappy thing to see.
That Sunday was my Dad’s birthday, so it was arranged that my uncle Kevin would come down to watch Grandpa so I could be home. I came back from the party to face a tale of woe. Grandpa had eaten and drunk nearly nothing (yet again) and had been unable or unwilling to stand for his diaper changing (a problem I probably could have handled much better than Kevin). I returned to find Grandpa sleeping on the living room floor, looking terribly exhausted. I think everyone was exhausted.
Monday Grandpa was better in that he was much calmer and more mentally collected, but still he was not very interested in eating for a man who had eaten little the last two days. Late in the morning he sat on the couch, his hands clasped in his lap, his eyes closed. I don’t know where his mind was, but twice he began to sing snatches of song. The first time it was some line from a traditional Christmas song, his voice slowly picking out the words until he trailed away. The second time he suddenly began “Jesus Loves Me” in a halting faint voice, his eyes still closed.
“Jesus loves me . . . this I know . . . for the Bible tells me so . . .” The careful plodding words were endearing and made me want to laugh like one does at a little child who does not realize how cute he has been. But at the same time it was almost heart-breaking.
You can know in the abstract why you do something, and that knowledge can set your course of action. But occasionally in the day to day living it can get hard, very hard, and somehow the knowing starts to feel dry and empty. But then in the flash of some everyday moment you see something, and feel something, that reminds you why you are doing this in a way you can’t describe with words.
That Monday I had just survived through four very hard days, and I felt spent. But watching Grandpa sit there, frail and small, eyes closed and hands clasped in his lap while he slowly sang snatches of songs, I felt powerfully reminded again of why I was doing what I was doing in a way I cannot convey to you in words. The picture of Grandpa, sitting on the couch quietly singing “Jesus Loves Me” to himself, will stay with me the rest of my life.
The good news to end this story is that Grandpa bounced back. It was not the first time Grandpa had a bad jag, and so the whole time I was intellectually telling myself, “It’s happened before. Just hold steady and it will pass.” But at the same time there is a voice in that back of my mind which whispers, “Oh God, he isn’t eating or drinking. What if he doesn’t snap back? What if this is it?”
But he did bounce back. Tuesday he got up like it was any normal day and ate like he had never been sick. And Wednesday. And Thursday. And so life has continued normally.
The bad news is that if he takes such a bad turn for a minor cold, what happens if he gets more sick?
Stupid question, I know.
I guess it was Monday morning that Grandpa got out of bed with a diaper full of soupy poop. (I had stopped the laxative when he stopped eating, but it wasn’t good enough, apparently.) This was nothing out of the ordinary, except Grandpa wasn’t entirely back to his normal self, so he wasn’t accepting my usual explanations as to why he had to stand still so I could clean him up. Just as soon as I had peeled the reeking diaper off his bottom, he decided it was indecent for his pants to be down and started trying to pull his pants back up over his soiled bottom–picture Grandpa trying to pull up the front of his pants while I am trying to keep the back of his pants pulled down with one hand and wipe with the other. Trying to keep my eyes on several things at once while Grandpa lurched around the room–for some reason bound and determined to get out of there–I continued to clean at his bottom. He quickly went to his knees, and started crawling from the room and off down the hall, pants bunched around his knees. I crawled after him, wiping all the way.
Such situations are best handled by keeping your sense of humor. Grandpa was certainly being anything but helpful, but thanks to some dexterity and quick work on my part nothing beside Grandpa’s bottom ended up soiled. And rather than losing my temper as he crawled off down the hall, I simply crawled after him and amused myself by thinking how life could hardly get more surreal than crawling down the hall trying to wipe your Grandpa’s bottom.
In five minutes I had his bottom clean. I put a fresh diaper on him, got him in his wheel chair and to the kitchen table.
Life went on.
Note: This material originally appeared in a blog I wrote while caring for my grandfather as he journeyed through dementia. It ran 2006-2009 and ended at the time of his death. This blog was the incipient material for a book, “The Sea is Wide: A Memoir of Caregiving.” If you have appreciated this writing, please consider purchasing the book and sharing it with others.