Wednesday, September 28, 2005

Lewy Body at 2 am

"Your mom is agitated... she wants to get up and get dressed. Can you talk to her?"
The call from the caregiver came at 1: 30 am. I was in town and hadn't gone to bed yet.
"Hi, Mom. How are you?"
"Well, I'm fine but this lady is trying to control me. I have to drive to Denver, and she's trying to stop me."
"Oh, she is?"
"Yes, and I am sick and tired of these people who think they can tell me what to do."
"Yeah, it's frustrating, isn't it. But it is 1:30 in the morning, you know."
"Yes, I know, but I have to get dressed--"
"Okay, I'm going to come over. I'll see you in a few minutes."
I pulled on sweatpants and a sweatshirt over my pajamas and drove over to Ocean View Assisted Living, thinking, "Why not? It's the easiest way to calm her down. And it's probably because I just drove in from Colorado and told her about the trip, got her all excited."
I used my garage pass to enter the building's basement parking, took the elevator using the building code, and walked through the silent corridors to the third floor.
Connie in pajamas, her futon rolled up, opened the door to Mom's room.
Mom was sitting on the edge of her bed in her Lanz flannel flowered nightgown, next to the short bed safety bar that was intended to keep her in bed for the night. We aren't allowed to have a full-length bar--the facility is only licensed for assisted living, not skilled nursing.
"Hi, Mom. How are you?" I asked, squeezing in to sit at the foot of the bed.
"I'm fine now that you are here. But I have to get dressed and she won't let me. I've got to get to Denver."
"How are you planning to get there? Are you going to take a plane or are you driving?" I sat with one arm around her, hugging her from the side, rubbing her back.
"I'm just driving but she won't let me--"
"Well, there's no need to leave at 2 am. Do you know it is 2 am?"
"Yes, I know but this lady is not helping me. She took away my watch and my opal ring." Mom studied her right hand, minus the ring.
"Where's her watch, Connie? She needs her watch. It's good to know what time it is." We found it and the ring, which would not go on her finger. The right hand was still swollen from her struggles and agitation in the middle of the night three weeks earlier.
"Now, Mom, if you're going by car, that means I'm driving. And I just drove for 11 hours yesterday, from Kayenta to LA, so I don't want to drive to Denver right now. That wouldn't be a good idea."
"No..." she smiled, realizing that plan would be a little ridiculous.
"Actually I don't plan to go back until next summer. The next time we drive in a car to Denver will be then. Here are those Navajo beaded earrings I brought you. You should wear them tomorrow with some outfit."
We continued talking and sitting there.
"Are you doing your hand exercises? We have to get this swelling down."
"Yes, I do them all the time. Just leave me alone. You think you're the boss of me, but I'm the boss of my own body."
"Now you're mad at me. You want to get rid of me. Okay, let's all go back to bed. You go to bed and I'll go home and go to bed."
"Okay," she said, looking back toward the pillow. She lay down, and Connie and I lifted and slid her three feet backwards so her head was on the pillow.
"Okay, good night," I said, kissing her and arranging the pillows and covers. "I'll see you tomorrow at 2 pm. You can pick out a good outfit to wear with those basket earrings. Yellow or black to match it."
"Yes, I'll wear that yellow suit."
"And be sure to check the sky next time. See, if I turn this little light out--"
"No, don't turn it out! I leave it on."
"But if I turn it out and open the curtains, you can see the sky. Can you see the sky? It's black now, isn't it?"
"Turn that light on!"
"If you want to get up, check the sky. If the sky's blue, it's time to get up. If it's still black-- Okay, I'll turn the light on again. Connie, if she tries to get up, open the curtains--"
"I already did that--I showed her it was dark."
"Okay... I hope you can get some sleep."
I walked back through the third floor, chatting with Rose (who had made the critical decision to call 911 in the June 14 crisis at 1 am) and a new staff person and Lorenza, now working only a three-night shift while taking classes to earn her LVN and also caring for her four children.
I drove home under the dark, starry sky and got to bed by 2:30 am, thinking yeah, it was worth it, an hour well spent.

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