In which I realize things are never going to be like they were
In early December 2014, my mom took a turn for the worse. She wasn’t sleeping well, keeping my dad up most nights. She was often confused and disoriented. As a family, we rallied together, as we’re known to do, to take night shifts so my dad could get some sleep and we could figure out what we needed to do next. For me, this meant working a full day at the office, coming home to have dinner with my family, changing into comfy clothes and heading to my parents around 9:00 p.m. to start my shift. You didn’t sleep on these shifts. The second you thought you might be able to nod off, she was up again. It was exhausting and tedious and heartbreaking and difficult and anger-inducing and sad. Below is a log of one such night.
December 13, 2014.
10:00 – Morphine, Haldol, Nebulizer
10:00-12:30 – Restless, messing with sheets a lot. “I don’t know what is wrong with me.” “I think I should just give up.” “Why do you keep asking me if I need something?” Longest Rest: 10 minutes
11:00 – bathroom
12:30 – bathroom; checked oxygen: 88
12:30-1:15 – Mostly slept, couple small bouts of talking
1:15 – “Were you looking for me?” me: no
1:17 – Sits up. “Bec? What do I have to do?’ me: nothing, go to sleep.
1:19 – “What do I owe you?” me: nothing, just get some sleep. messes with her oxygen for a minute, fusses with sheets, closes eyes, more messing with oxygen tubes, sheets. this continues for 5 minutes.
1:25 – Sits up, grabs sheets/comforter. Lies down. Squints at me as though seeing me for the first time.
1:27 – Sits up, messes with oxygen, grabs sheets. Lies down.
1:28 – Sits up. Grabs glasses and puts them on. Looks around. Takes glasses off. While sitting, messes with shirt. Pulls on sheets/comforter. Lies back down after a few minutes.
1:32-1:41 – rested
1:42 – Sits up. Asks me again if I need her for anything. Starting to feel like she would rather be awake right now (sundowners).
1:45 – Sits up, I go to get meds, she’s laid back down.
1:46 – Sits up, messes with sheets and comforter. Lies down.
1:58 – Sits up. Lies down.
2:00 – Haldol. Seems to become drowsy pretty quickly, can’t do nebulizer.
2:00-2:35: Mostly slept.
2:17 – Raises head, hmmm? Lies back down
2:36 – Bathroom; insisted on going back and turning the bathroom light off
2:45 – Nebulizer, checked oxygen: 97. Lies back down and closes eyes.
2:55 – Ran downstairs to lower oxygen from 7 to 6.5 per Dad’s instructions if she got up to 97. As I came back up, I heard her calling for me. “I didn’t know if I needed you and didn’t know where you were.” Reassured her and had her lie down. She lies on her back, which I will see if it makes a difference vs. being on her side..
2:57 – Pops up, “Oh!” But then realizes she doesn’t need to do anything. Sits up for a few minutes. Lies back down on side.
3:00 – Pops up again. Genuinely surprised when I tell her it is 3 o’clock in the morning. “I never know what time it is anymore.” I ask her what she is thinking about. “Where is <my sister>?” me: she’s sleeping, it’s the middle of the night. Everyone is sleeping. Sits for a few more minutes. Arm is trembling holding herself up. Get her to lie back down on her back.
3:09 – Sits up. Says she needs advice on doing something, but can’t remember what it is. I tell her that it is the middle of the night, so let’s try to get some rest and we’ll figure it out in the morning. Lies back down on side. Eyes not completely closed.
3:55 – sits up. talk to her gently, she lies back down.
3:58: sits up, messes with bedding, lies down
4:00-4:42 – sleeping
4:42 – Sits up, lies down.
4:55 – Sits up, bathroom; checked oxygen: 84. Turned back up to 7.
5:00 – <sister> takes over
I didn’t know if I needed you, and I didn’t know where you were.