It’s amazing how much he can change from day to day, even hour to hour.
You can tell markedly, when his medication wears off, even though his condition is such that you would swear it was not working, if that makes any sense. That’s where the worse becomes worser.
These past couple weeks, he has been so very weak. Eating less. Drinking less. Waking during the night wanting cold water.
Mornings are best, after I get him washed up and dressed from bed. I give him his medications before he gets out of bed so they have time to start working before he gets to the table. I can tell pretty well by how much assistance he needs to get out of bed, how the day will go. Lately, he needs a lot of assistance. I sometimes have to call the daytime assistant to help get his wheelchair under him because I can’t let go of him long enough to do it myself. If he is strong enough, I am able to support him myself while I reach for the wheelchair.
Depending on his condition he may need to be fed. On good days he will feed himself. Yesterday started off pretty well, he fed himself at breakfast. Later, he wanted to putty the floor in the sun room. He was too interested, too determined. He tried to do it from the wheelchair which I knew would not work.
I helped him down onto the floor onto foam pad. After the episode of getting him off the floor using the pneumatic lift (see previous post) he was quiet the rest of the afternoon. At dinner he could not stop yawning and soon fell asleep half way though his meal. This has happened before but usually he can hold out until later in the meal. He woke about an hour later and we watched TV until it was time for me to feed the kittens about 8 pm. (See other blog story)
We went back to feed/watch the kittens and he indicated he wanted to go to bed. I got the kittens back into “their room”, my bathroom off the bedroom, and got him into bed. Not without difficulty. He let me use the pneumatic lift to get him off the floor, but won’t let me to use it to get him into bed. My back tells the story more times than I can count.
He fell asleep immediately. Slept soundly until 3 am when he called out for cold water. Then his legs starting jumping and he wanted medication. I don’t normally give him meds at this hour, but I did and adjusted his dose at breakfast. Afterwards, he was restless in bed, wanted to get up. I got annoyed telling him its only 3 am. He got angry and said he can’t help it (which made me feel guilty for being annoyed).
I got him up and dressed not knowing how long he would be up. We went to the table. He had a sweet roll and tea. Considering he ate only ½ of his dinner, this did not surprise me. What was unusual was his getting up at this hour. He was back to bed by 4:30 am. Years ago when his disease was diagnosed and we were trying to get his medications figured out, this was an every night event. I hope this is not an indication that those late night wake up calls are coming back.