Friday, December 10, 2010

Well - what  can I say. It has been an interesting 48 hours. Yesterday the first support worker came at 7am and bathed John and got him up on the couch. Went very well. But by the time the 11am worker came he was in bad shape and we just ended up putting him back into bed. Then I had to get him up again etc. later on by myself, so we did not accomplish our goal to take the strain off of my back. At 10pm the worker put him to bed and that went quite well too. BUT he woke up at 2am and decided he was going to get up and work on his computer. Only he fell. So them I had to get him up off the floor and back into bed. So much for saving my back.
Today was worse - much worse.
It started out OK again with the 7am worker. By the way we have a different woman every time they come - they say they will be back next week same time - so that means 21 workers in a week to try and show them what to do.
However at about 10am John had a really bad attack. So when the worker arrived at 11am there was absolutely nothing she could do for him. I was sitting on the couch holding his arms and she sat and talked to us. Then the Physio therapist arrived. She was quite upset with the condition John was in and got very concerned. Seeing him at his worst is scary. So she called the Occupational therapist and told her to come over right away that this was an emergency. Just then the supervisor for the support workers arrived with a ream of paper work she wanted filled out and signed. But I couldn't really talk to the therapist or go over the papers with the supervisor because John needed me full time.
They finally decided to put him to bed. But by that time the support workers hour was over so she left. We got him into bed but he was in really rough shape and they all had opinions as to what was wrong and why he was like that and told me I should let the doctor know - they did not understand what was going on or how often I have talked to the doctors. They thought the support workes should come at a different time so he would be better. They did not seem to understand that there is no schedule for when the meds are not going to work.
Well, the supervisor finally left and the occupational therapist arrived. I was still busy trying to settle John down and get him comfortable. She came in and the PT and OT put their heads together and started deciding what needed to be done - plywood put down over the bedroom carpet, the dressers moved out, the door taken off, a lift installed, a comode, and the rug in the living room removed. So much for our lovely home.
They said I needed to have the wood floor installed before Monday and the lift would be here Tuesday morning. We also have to get a wheel chair. Right now we will rent them but it will still be quite an outlay.
I felt totally overwhelmed and discouraged by the time they left. However, I am doing better now.
After they had all left the meds finally kicked in and he felt better so I moved him back out to the living room. The problem being that I am still doing most of the lifting and moving!!!
At about 9pm he had another bad attack so I had to move him from his chair to the sofa. When he is that bad he is dead weight and cannot help himself. When the worker arrived at 10pm he was still pretty bad and did not want to be put to bed at first because he was having difficulty breathing. But after a few minutes it let up a little bit and he let her put him to bed. She was a little bitty girl so had some difficulty moving him.
I have hesitated to get in support help for just the problems encountered yesterday and today - we end up paying for a lot of help and then I do the work anyway because you have to wait until John is feeling well enough. Well, it is too soon to say, I told you so, but I am not encouraged.
Maybe tomorrow I will feel different.

A big two thumbs down for today.