On Friday I got a call from Presby that he had tied his hospital gown around his neck. Also that he kept trying to get out of bed, and could a family member come watch him. So I stayed with him and tried to work from his room on the computer. I couldn't however get online, so I just worked email from my Blackberry. Ever try to sit in on a one hour conference call with no mute button on the phone and someone yelling, "I want a piece of cherry pie right NOW!" Trying to climb out of bed all day, gown off most of the day, demanding clothes, food, to go home, you name it. The hospital finally came to my rescue when the nurse flew in and said, "Good news! The doctor has released you to go to Remington!" Thank God my babysitting day is OVER! The scary part: The nurse told me he hadn't given Dad any pain killer for days. This is the new Dave. No wonder we hadn't had any bad trips. He was not on pain killers. He asked every single nurse and tech, "Was that your mother who had the lead last night in that performance? She was terrific!"
In the early afternoon at Presby he walked with the physical therapist about 15 feet and was exhausted and had to return to his bed. This was good progress (if I ever get in an accident I want this lady. She was fantastic.) But after sleeping in the bed for thirty minutes he forgot he couldn't walk and began trying to sneak out of bed again. I thought maybe it was for the attention it affords him (people having to come in and lay him back down, or me standing at the bed on my Blackberry), but I also think he believes he can walk without help. He can't be convinced otherwise. This is a major problem. He will continue to hurt himself and will be wheelchair bound shortly.
When he went to rehab (another palace) at Remington, they assumed I would stay the night. I answered a few questions and left. I suggested they use restraints. They said "We don't do that here." I said, "Make sure he has a bed alarm." What I didn't add was, "...because he will require a person running in and out of the room all night to keep him in bed." The next evening I brought him clothes. I walk into his room, and there he was by himself, trying to get out of bed. The tech came in and asked if I am staying. I said, "No, I'm just dropping off clothes." She said "Let me know when you are leaving" and left the room. He immediately starts to climb out of bed and I said, "I'm leaving." He yells, "I'm just going to put on some pants so we can leave!!" I find the nurse and they put him in a wheelchair so he could be with them when they went about their other duties. I thought that was a very good solution. Nobody could work without Dave being supervised.
He walked twice in rehab today. I don't know how far or how long. The tech told me after rehab (when I assume he was totally exhausted) he came back to his room, and "Not ten minutes later he was climbing out of bed." Houston, we have a problem.
The rehab told me on the first day the bed goes all the way down to the floor. So my answer is to put it on the floor and let him crawl around. I guess they don't want him going down the hall like that, but hey, it IS exercise for the hip. It's all carpeted.
I think what I hate most about dementia is that no reasoning sinks in. To him he is perfectly capable of walking. He can't remember that it was a major struggle to go ten feet thirty minutes ago. It would be nice if, when he's in the mood to walk, someone were there to help him do so (it requires a trained physical therapist.) But I guess it's all scheduled. But if he can do five short walks per day with a 20 minute nap in between, that would be faster progress.
I'm trying hard to maintain my real life. As my piano teacher says, if you start canceling, canceling, canceling, the caregiver life takes over. I kept all my appointments yesterday, which included a guitar jam with Julie, a play with Pat, piano with Eric, three hours of catch up work at the office, and dinner with Leonidas. Whew. Today we move his old bed out of assisted living and I get a massage.
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