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I joined Survivor chat last night to get through what is becoming a very difficult week. I am so glad I did. They are so gracious, dealing with their own trials but willing to help us caregivers with a lot of insight and advice. I thank them all. I had had a heads up about Speech discharging Bruce for a good two weeks. She had consistantly said he was progressing beyond anything else she could help him with and I appreciate the fact that she was a professional and was not just out for the money. What I was not prepared for was OT and PT this week. They are cutting back on Bruce's sessions. Again we private pay and again they do not want to spend our money if it is not helping and apparently they had a meeting and Bruce is just not making the progress they want to see. On top of that his Botox shipment was delayed yet again by Insurance, making his arm injection now two months overdue. The issue as everyone knows is Bruce will not initiate any therapy work at home and it is a battle between us for everything I ask him to do with threat of no food. Interesting insight from our friend was my goals are not Bruce's goals and strangely enough that seemed to calm me. He is absolutely right. The one goal Bruce has verbalized is that he wanted to go back to work and we are now into the fourth session at work (once a week for as long as he can tolerate) with the OK to do as many days as Bruce would like. Other than that Bruce is unable to tell me what it is that he wants. Therapy will be double sessions on Mondays and Fridays and of course the pool will reopen in early June and he still wants to do that. I am trying to step back here at home and letting him fend for himself within safety boundaries, which as you all know, after they fall once you are on your toes all the time. But it has to be done. The other issue that I have finally accepted is that he doesn't care if he ever walks again. A tough reality but I have accepted it is true. The motor scooter which I have time and time again refused to consider, I must now. Bruce made a deal with his therapists to consider what he wants out of therapy and will have a meeting with them on Monday. Strangely enough PT had been working with him on balance for the past two weeks and today he tried it himself in the bathroom with very good results, so somehow the PT hit one of his goals without even knowing it. Yet he is safest there with the WC right behind him and the grip bars. I, under advisement from our very close and trusted friends, am now going to search for a psychologist for both of us. Our Rehab specializes in stroke/brain trauma and am sure they will have suggestions. I am confused, tired, disappointed, discouraged and yet strangely serene. I hate giving up the only times that Bruce really works out and puts in an effort, but I also understand that he has to want to do it himself or it has no meaning.


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I would not give up hope. William was like that for awhile. But, something has happened recently and he really wants to work at recovery. I do not have any structured PT or OT. It is all on our own.


The water is my source of therapy. I take William 4 times a week if I am not working. We are now staying for an hour. We are doing different things. We watch the deep water class and try to do some of the same moves.


Today I gave William two showers. Showers are therapy..Lots of standing and moving about. We took one shower when he got out of bed and another after the pool. I walk William around the house and to the car and from the car into the house. In the water William asks me to move his arm. He wants that arm to come back.


I consistently tell William that he is getting so much better. He thrives on praise. Fortunately others have mentioned that they have noticed a difference. They feel that he is getting stronger and looking better.


I have reset goals with William. William loves to travel. I told him that maybe in 1-2 years we will begin to travel again.


I told William that he now orders his own meals. Before he always asked to order.


I have a motorized wheelchair but William does not to use it.


You give the best advice. thanks.


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Goals? they tend to be a bit like "New Years Resolutions" in our house, a great idea but not likely to last for long.


See you in chat.



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