Last night as I sat by Dad’s bedside, feeding him chocolate ice cream (his favorite), which mostly ended up in droplets on his hospital gown, he asked me: “Do you hear that?”
“Well, there are a lot of things to hear. There are people talking in the hall outside your room. Is that what you mean?”
“No, I mean there’s a saw running. Are we in the basement of the shop? Did I, or we, leave a saw running?”
“I don’t think so. We’re not in the basement of the shop. We’re in the hospital.”
“No we’re not, we’re in the shop. In the basement. Please go turn off that saw.”
I listened for a bit to see what he could be interpreting as a saw, because he was getting a bit agitated. In fact, he started trying to get out of bed.
There was in fact a sound that could be saw-like, if you didn’t know and your brain was addled. It was an air compressor that feeds air into the high-tech leg-massaging pneumatic stockings he’s got on. So I pointed that out, that there was a compressor running and that’s what was making the saw-sound. He looked at me like I was trying to sell him a bill of goods. But he calmed down about that, resigned, apparently, that no one was going to shut down the saw.
A bit later he heard a group of nurses chatting in the nurses’ station.
“I think they’re making a movie out there. One of those spy movies, I think.”
“What, like James Bond?” Sometimes it’s better just to go with the flow and not try to “reason” with a delirious person. Arguing with them about their relative view of reality can agitate them.
“Yeah, sort of…(unintelligible speech sounds). “Are you part of that movie?”
“No, I’m not in the movie.”
He nods his head and closes his eyes.
He’s sundowning. It’s very common in dementia. Somehow, when night comes on, even if the room is well lighted, they lose touch with reality. Everything gets surreal and they can become frightened, and even try to run from unknown foes. Many falls occur from this. Unfortunately, in institutional environments it often leads to restraints: people being tied to their beds so they won’t climb out and fall.
It’s one of my greatest fears about my dad going to a nursing home, that they would put him in restraints when I wasn’t there. I curse my mental illness for making it impossible for me to stay with him 24/7. I can’t because I have to take this heavy cocktail of meds at night, and I wouldn’t be any good for helping him even if I was there. Besides, if I don’t sleep I get very sick, and I can’t risk that. I wouldn’t be any help if I had to be hospitalized myself, and I wouldn’t be able to spend quality time with him either. So I am going to lobby for giving him a dose of Haldol at bedtime, to ward off the heeby-jeebies and let him sleep.
This afternoon I thought he was going to leave the planet. He was Cheyne-Stokes breathing for a while. Cheyne-Stokes is a pre-death breathing patten where the person takes 4-5 increasingly deep breaths followed by a period of no breathing for 10-15 seconds. It’s the respiratory center in the brain shutting down. I sat by his bed and cried my eyes out. My mom, who had gone out to get us hot fudge sundaes, came in and saw me sitting there bawling. At that moment Dad was breathing, so she said “What’s wrong?”
I said, “He’s Cheyne-Stokesing.” She knows what that is, being a geriatric social worker, and having started up a hospice in this county.
“No he’s not,” she said.
“Watch,” I said, and he took four, five increasingly deep breaths and then stopped breathing for a good ten seconds.
She went over to him and shook him, and he opened his eyes and mumbled something unintelligible.
“He was just asleep.” she said. We both know that people can go in and out of Cheyne-Stokes for days or weeks before they die, but it means the brain is getting ready.
I tried to get him to eat some ice cream, but he wouldn’t. I have never seen him refuse ice cream before. I asked him if he wanted water and he mouthed “yes,” so I got his pitcher and put the straw to his lips, but he couldn’t manage to open his mouth. I told him to open his mouth but then he couldn’t close it. So I took the straw and got some water in it and dribbled it into his mouth, and he swallowed it.
When my mom was out of the room, he opened his eyes and looked way up above his head. His eyes widened, then he looked at the foot of his bed and mouthed, “Who are they?” I know who he was seeing: the angels who surround a dying person. I whispered the Sh’ma, the central Jewish prayer that is said twice a day and at the time of death, and I softly sang some other psalms. He mouthed the Sh’ma with me, then calmed down and closed his eyes.
I was sure he was going to die today. The nurses all got concerned too, and came in and checked his vital signs, but everything was ticking right along.
His doctor came in to see him later in the afternoon. She said hello, and he perked up and smiled at her and returned her ‘hello.”
“How are you feeling?”
“Just fine, thank you.”
“Does anything hurt?”
“No, nothing hurts. I feel fine.”
I was thrilled, and amazed, and felt like kind of a jerk for thinking he was moribund. The doctor gave me a lecture on the phenomenon of Sundowning, even though it was bright and sunny at the moment. I nodded my head.
Now I’m at home, having a break and writing this. In a little while I’ll go back to the hospital and sit with Dad till ten or so, and try to keep his mind busy so he doesn’t try to climb out of bed to turn off the saw, or rip out his Foley catheter (which keeps his bladder empty), which he has been trying to do all day. And I guess I’d better eat something. All I’ve had today is a Cliff bar and a McDonald’s hot fudge sundae, not the best nutrition in the world.