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Off for a "TOOL"


Ethyl17

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I haven't blogged much since the wedding, but we are in a transition here and I have been trying to get back to basics.

 

I came home a few too many afternoons with Bruce still in moccasins and not washed up. I have a premier caregiver team here, so I know the issue is Bruce. We discuss, review but it is obvious that Bruce is regaining control and while that is a great thing, he still is having trouble sorting out priorities. So now it is right into the BR when I get up; wash up, clothing change, AFO on. No discussion. This is your priority.

 

I find him much more cognitively aware. He answers the phone and I am getting reports that he is quite the Chatty Cathy! LOL. Bruce hears and understands everything. In the past he hesitated to respond as it took so long to find his words. Mary Beth called me at work to tell me he answered her call and actually asked her about things that were going on in NH. She was thrilled.

 

Today Mister decided to take a ride in his WC when we finished grocery shopping. We are having our winter thaw. It was a beautiful day - warm, sunny. Usually I leave with the check outs and he gets himself to the truck. He loves the ramp down and loves to go really fast. Lifts those feet and just cruises. But we are in a parking lot! I know he watches but he is not the same height as a walker.

 

It was a stock up day so I had a lot to unload, but when he wasn't at the truck after that, I panicked! I found him five aisles over just tooling around. Now Bruce moves his WC with his feet. Never learned the one hand propelling. First of all, he is out in the fresh air. Next is the exercise. And while I love this, all I could think about was the traffic and his height. The carriage return employee says "He's over there Mrs. Sparks, he's OK. I have been watching!" When I finally caught up with him, he was laughing and just so happy.

 

On the way home he said "I never worry, you are always around somewhere." And that got me to thinking. So we had a discussion. Is that why he has difficulty problem-solving? " Ethyl, I don't have a cup." Except Bruce, where are the cups? If I was not here, how would you get a cup? So something to think about.

 

I am down with the flu. Been a long week and hopefully the worst is over. I did get the flu shot and think I had a mild case because of that. Mostly body aches and exhaustion. A co-worker did some errands for me and of course, I have our wonderful caregivers on board. But the personal stuff is still on me. My body rhythms are off as I sleep whenever I can. Kira is loving it as I spend most of the afternoon on the couch - kitty time LOL. Tomorrow am hoping to sleep in, get some phone calls made and then off to work. Bruce has been terrific. Makes me tea! He can find the cups for me - LOL. Debbie

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It is so good to hear about his speech and cognitive improvement! Do you think the speech therapy has anything to do with it? Great feeling to be called MRS, yes?

 

I have been working with making Bob think, too. :)

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Debbie, sorry you have to worry about Bruce when you are sick yourself, the life of a caregiver eh?

 

I can see improvements in Bruce that are really outstanding. Here we attach a flag/streamer in a light weight pole (like a fishing pole) to the back of the powerchairs and scooters so you can see it flying like a pennant above the cars, even the SUVs. I guess you need one of those for Bruce if he is going to do parking lot tours.

 

Sue.

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We are slow, lost some function activity in the brain, paralysed some but over all we can still do certain things around the house or outside and it's appreciated by our wives for sure!!

 

One day Bruce will be like me, able to bathe alone and come out clean as a whistle too! Give him more time, I'm on 9 years, but I feel the scooter made me feel like I "Can do and can go myself" because I have to get off it to do things and that WC I had I couldn't get out of it myself or without help!!

 

It may not bother him but it sure did me and I didn't want nothing to my back like the WC are, it made me feel I was in a hole!! Talk to Bruce one day and see how he feels riding in his chair!! He don't want to get stuck with it and delay his walking some and he has his AFO!! Just my opinion I don't know his physical condition!!

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Debbie, no wonder you like taking Bruce out as he so enjoys his outings. I wish Larry would like going out. He does go to the rehab facility for exercise and to church and the kids but not shopping. He never liked shopping before but would run to the store in a heartbeat if I needed anything. I don't think Larry likes those electric WC the stores have.

 

Julie

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Julie: Larry walks. It is much more difficult and tiring for him, and definitely more painful. There are days Bruce balks at transferring! But Bruce does have a thing about the grocery store, that is for sure!

 

Fred: Bruce did walk with a long leg brace and quad cane. He basically gave up when he became overtoned and could no longer use the long leg brace. It has been years building up his knee and thigh to use the AFO and he still was not independent, as he was in the long leg brace. His WC breaks down into three parts, his scooter into four parts. The battery weighs the most at 35 lbs. Anything he choses to use, requires me to take it apart and put it together. Bruce also has an electric lounge chair to raise and lower to assist transfers - was also independent with that until the overtoning. Now he won't go near it. To date he is happy with his WC. Carl keeps it tuned up for me, it has an annual go-over by the manufacturer and I replace his cushion every year. Best I can do right now.

 

Sandy: Speech Therapy was the priority in Bruce's recovery. He had a wonderful one at the SNF and she suggested we try the ones from Home Care as they were paid for. But she knew and gave me a business card from her College roommate. Bruce tossed the two Speech therapists from the home care out after 1/2 hour - LOL. So we hired the private therapist. Now the up side to this was the Speech time from the home care extended his PT-OT visits and OT felt he would do better in Out-patient, so we got tons of home PT. Bruce loved his home care PT and he made great strides with her. She had him out of the hoyer and transferring on visit two!

 

The private paid Speech was the best decision I have made in all of this. She was young, great personality. She took a long time setting up a plan of care for Bruce because she bothered to investigate his education. She said "Bruce, you are going to give me a run for my money!" And he did, but she stepped up every time! We still have all of her protocols in the main rooms of the house. The important thing was that EVERYONE used them. Bruce was not so sure of all of it. But as the therapist advised, eventually Bruce would begin to use those protocols without prompt. Finding other avenues himself to find the words. And at about 2 1/2 years that is exactly what happened.

 

Sue's suggestion of a pennant might just be the answer! Thank you all. Debbie

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Debbie,

I am sorry that you are sick with the flu. It is a good thing that you had the flu shot.

Bruce is improving cognitively. That is great.

I can tell that he is really improving.

He is brave...going fast in the wheelchair. Wm goes really really slow.

 

Feel good to today.

Ruth

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Debbie, hurry up and get rid of that flu bug just don't let it fly toward Texas we got plenty already but my wife is OK and I'm inside not around other people much! I was thinking you had a lift for his power chair like I do for the truck to haul his chair and you use the manual chair in the house!!

 

I got a little go-go scooter for indoors but I seldom use it! Main reason is this is a two story home and I got the stair chair for me but it won't haul the scooter so I use it downstairs only and it has small wheels so it don't work in the yard and grass!!

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