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One week later


Ethyl17

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Well I'm glad I didn't panic. Bruce spoke with all three of his therapists at my urging. Monday he starts with swim and I told him if he wanted to cancel PT and OT it would be up to him. He spoke with his PT and basically she reviewed what he already knew about losing what he had gained and the increased pain of not moving around. He agreed to go to both sessions. New standard is I am not to be with him. I am to take him, drop him off and pick him up after sessions. Speech is done privately at home and we both spoke to her on Wednesday and she said he was continuing to make good improvement and while she would honor his decision, she felt he needed to continue and she would tell him when to cut back. Here at home I have backed off of everything. I tell the CNAs what the therapists want worked on and then let Bruce take it from there. He does as much as he wants and stops when he says stop. I have stopped fighting with him. I wait for him to ask for help and the changes have been subtle but are there. He manages his am and pm washups and teeth, controls his Estim, massages his hand, takes off his shoes, prepares his side of the bed. This of course forces him to verbalize more. So all in all, while I am not happy about lessening his physical activity, I have accepted that he will come to terms with responsibilities in all good time. He still has to swim with me five days a week, but I have offered to send him with the trained CNA if he prefers. Earlier in the week, he stood with his cane (no AFO or walking shoes, just his mocs), picked up the mail (same hand as the cane of course) and took four steps to the front door before I could get to him. Fortunately he realized what he was doing and stopped. Actually I think he was trying to figure out how to get the door open, but none the less, he stopped. After I could breathe again, I thought "Good for You." Not actually the independence he's ready for yet, but at least a clue as to what his goals are. Thank you for all the advice and will keep you posted.

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Good for you Debbie, I've done that with Ray from time to time, backed right off and said "Okay, it's up to you now."

 

With ten years of caregiving and a lot of stopping and restarting of physio, OT etc due to falls, breaks and additional strokes our relationship really suffered each time I have had to become the one who told him what to do. Now the shower nurses help him with his physio exercises three times a week and the rest is up to him.

 

My wish for him is to stay healthy and stable, nothing more. That way for me is the way to go, too many years I had to be "Attila the Hunny" so now I don't.

 

Yes I would like him to improve, no I do not see the likelihood of that now. So I will be content for him to stay at the present level for as long as possible.

 

Sue.

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