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Another Transition



Entering another transition time-always my favorite. Fall is such a beautiful time here in New England and this year it lives up to its reputation. One of the up sides for me is that my focus has changed dramatically. Our daily rides, whether it is to do errands or just take a ride, allows me to fully enjoy the season. Last year I noticed it for the first time. The leisure to just enjoy Mother Nature. Bruce so enjoyed last Halloween and am making the same arrangements to duplicate that this year. Friday will be his last day for a while in PT and OT. Both therapists agree it is time for a rest. My thinking: if he is a candidate for the Baclofen pump, with the holidays coming up it won't be put in until 2011 and he will definitely need therapy after that; he is making no progress in therapy at this time and he refuses to do any strengthening or exercises at home. If he is not a candidate for the pump, the oral Baclofen will be increased to therapeutic levels and he will again need therapy after that kicks. So we will save the money if needed in the future. In the meantime, Jen and Leo, his original caregivers, are back on board as we can pay for them again. I have been offered a temporary position doing paperwork at my Rehab-make my own hours and will certainly do that. We will continue to do the pool and Jen is signed off for that, so Bruce will not miss his swim if I am at work. Like the ramp to our deck, the scooter seems to be a bust. My original thinking was he forgot he had it, but if I mention it, the response is always no-just like the ramp. Made him ride it on Saturday-beautiful day, empty parking lot and he needs to get out in the fresh air. We continue to work on things here in the house that he can do with little or no help (I am hoping to be able to cut down on caregiver hours): dressing, grooming, working in the kitchen, laundry, bathing, toileting. Bruce seems very agreeable to this. Last week he made a cake and frosted it and then brought it to work. When I asked him if he preferred doing those kinds of things, he said no, not really, but at least it takes me away from the TV (praise Jesus!). I read about the other diversions that our other survivors have: workbooks, swimming, reading, computer and we are so far from that. Part of me thought it was the short term memory issue-he just didn't remember-but even with written suggestions, nothing has grabbed him. Spoke with a fellow survivor at Rehab today and he said I am so frustrated after 11 weeks and I look at you two and its been 19 months, and yet you are still optimistic. Well, no, outward facade is always positive, but I think I went about this whole recovery issue wrong, now in seriously reviewing it. But there is no going back and Bruce has been exposed to just about everything there is to offer in recovery. His PT took the time today to call me in and show me the exercises he must do daily. She emphasized that all of them were independent and made sure Bruce understood that they had nothing to do with me and he was responsible for them. One of my biggest complaints is that our "pros" add stuff regularly without accepting the fact that they are just putting more responsibility on the caregiver, so this was a real breath of fresh air. Will I have to remind him? yes; will he do them? no. But I continue to have hope that one day he will say to me "Ethyl, I want my life back. Where do I start?


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is there something he loves to do, maybe going to work more often can be his carrot for him to become more independent such that he can achieve that goal. fortunately I never had that issue since I had young son to look after & reclain my life back as a mom & wife.



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Debbie your blog set off an echo in my mind and I thought "this is me a few years ago" so read:




and see if it has a similar ring to it. Ray and I have fought the battle over and over - I want something done, he doesn't do it because I want it done etc. So, now our shower nurses put Ray through his hand full of exercises, I don't. He will do them for the nurses he will not do them for me.


I can see where Ray would have been so much better off with an attitude change but although so many people have spoken to Ray about it he has always run his own race. Too bad eh?



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I can relate to the exercises that simply get added then piled on top of everything else that needs to be done, there's not time enough to do it all. Therapists have an advantage, they get to go home at the end of the day and kick back. They get to end their 1 hour and then prepare for the next person. That's the secret I guess, how to make a little time to just kick back and screw off for a while. (can I say that?) sorry. I've found out one thing that you and Sue know so well, Bernie will exercise for me a little, but when she says it's over, it's over.


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