Last night was the worst night for me, possibly for Bo too. I didn’t sleep at all, not one hour, not 15 minutes, so he didn’t either. I’m usually up by 8 but today I wanted to stay in bed; however, Bo was awake, talking to me, getting in and out of the bed.
At ten I gave up and called downstairs to Jon for help: “It’s your turn! I can’t do it another minute.”
The sundowning is increasing. Or, knowing how unpredictable Alzheimer’s disease is, maybe it’s getting worse, then will calm for a while, but the past couple of weeks have been hard and I’m so sleep-deprived that even my memory is affected. I walk from the kitchen counter to the refrigerator to write something on the grocery list but can’t remember what it is.
Between dinner and midnight last evening, Jon was with Bo, and when he finally put him to bed, Jon said he doubted that Bo would sleep because he was non-stop throughout the evening, wanting to “go home,” asking what everything was and what it was for, not understanding what was said to him or what to do, simply unable to be still. This is agitation although it’s not what we think of as nervous, frenetic agitation. I have to wonder if this continuous motion is as awful for him as it seems.
Bo’s Hospice nurse has helped us with the medications that are typically in a survival kit that includes sleeping and agitation medications, but so far, nothing has been effective. Should we increase dosages again? I have to discuss that with her. Several nights ago I gave him a second medication that was prescribed but we thought it may have further agitated him; he stayed up almost all night.
When I went to bed last night, no matter how hard I tried to make no noise, no movement, when I slipped under the covers, he was awake –asked me a question. But the question was gibberish, and from that moment it continued – up every hour to go to the bathroom, talking to me in bed, moving to my side and patting me, rubbing my back, asking questions. One time his legs were off the bed and I felt the movements so I got him back in and settled; another time he pushed all covers aside and was kicking the bed.
“Hey!,” he asked loudly, “ what am I supposed to do? When am I going to leave?” Another time he asked, “When are the people leaving?”
He asked if it was raining, what time it was, what the dog was (she had jumped onto the bed between us), and time and again, asked if I was OK. I would just sort of doze off and he’d ask it again.
There’s a certain streak of electricity that goes through the brain when you are just starting to slip to sleep and something interrupts it. It’s almost as if a nerve has been touched. After so many times, it’s almost painful, and by morning it had happened so many times that I just wanted to cry.
When I called to him, Jon immediately got Bo up and dressed and said he would keep him busy all day, making him so tired that he would sleep tonight. He took him shopping, ran errands and ate out, determined to break the cycle. Will it work?