Wednesday, September 30, 2009

High Care/ Low Care the division isn't appropriate for fluctuating Lewy

Dad is in respite till Oct 5th. On the day we left for respite, Dad was confused, trying to work out where he was going. I kept talking to him in the car, trying to reassure him, that it's the place where you go on outings, they have the little dog etc, etc. He remembered the place but at times was like he was, the only way I can describe it, it was like he was in a 3rd dimension. Here, almost here, a bit somewhere else, moving in and out of these phases at times within seconds. He was trying to keep focused and then woosh. Throughout all this he remembered me and knew he was in the car and verbally he made sense. It was the questions that he asked that displayed his confusion and altered perception of reality.
He was unsure about going there. When we arrived the staff made him welcome with hugs and reassurance and settled him in. He perked up and was cheery when I left.
Dad's medical chart had a couple of days before it expired so I went to our GP and he filled in a new one. Took it and visited with Dad. The GP had made a change and I needed to get the chemist to make up a Webster pack (chemists makes up weekly dosages for staff to dispense).
On this visit Dad was sourly and quiet. He was worried he was there for 4-6 weeks. I told him he had a week and half to go. One minute later he would say again so it's for 4-6 weeks. He told me he had had a fall out of bed but wasn't hurt. That the chap who helps him into bed does it too fast for his body. I stayed and shared afternoon tea and by the time I left he seemed a little more relaxed.
I had to get the Webster pack filled and take it there. On this visit when I arrived one of the staff bailed me up in the corridor. Telling me Dad had collapsed onto the floor, on purpose, trying to get them to phone me. Another hit by a bus moment. Another staff member came out and told me she had seen him do it. He waved his arms in the air and fell down carefully placing his head. My daughter and I have seen him do this at home. It has happened when I have for hours been through a list of things trying to help and nothing has. Dad now says to me well I'll lay on the floor. In the end I have said 'Ok Dad if that's what you want to do but you'll be more comfy in bed' but the answer always is I don't want to lay in bed. I wonder if this is part of the 'restless leg syndrome'. Plus Dad has quite a few times asked them at the day care facility, he goes to of a Tues, to phone me. The staff there think it's anxiety.
This time it was for them to phone me. They also told me that Dad had been awake at 3am screaming in the hallway. 'Help me, help me'. Dad does this at home. This just breaks my heart. No one should have to go through this.
They also tell me they think he is now High Care and that he is too much for one person to handle. His mobility is getting worse too. They give me the name of a High Care place that has vacancies. I drive home and phone my daughter, sobbing.
I toss up about the decision and phone the facility in the morning and speak to the manager to see how Dad is and to ask her a few questions. She thinks Dad is borderline High Care/Low Care.
Because Lewy fluctuates so much, Dad has good days and nights and then bad. He moves between high and low care. I didn't think a High Care place was right for Dad yet. On good days he is aware of everything. The manager helped me to decide a Low Care facility which has a High Care section attached is the best place so they can make the transition when the time is needed. Even this doesn't seem fully appropriate as it concerns me that Dad will end up in High Care when he still has good days. Lewy is truly a heart rendering journey.

2 comments:

  1. This has got to be so hard on you!! The many ups and downs! The place that offers high care/low care seems likely to be the best place for him. Honey, you really need to give yourself a break and this move would be the best thing for both of you. Please, carefully, consider it.

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  2. Yes BBB, I agree totally. I have an appointment this afternoon to have a tour of a facility. Keeping fingers crossed.

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