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Life turns on a dime


Ethyl17

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Wow! Life sure turns on a dime. I can't believe I blogged two days ago, so optimistic. I have spent so many hours trying to figure out exactly where Bruce and I are in recovery, what is best for Bruce. How much I can do to help him. What I think may be the right course to take - Bruce gives mostly no input still and that was why I have spent so many hours trying to figure out what changes were needed.

 

Bruce is in a funk. He no longer will even walk with Leo. He loves his Stim bike, which we are set up for. Today he told me he hadn't thought of swimming in a long time. Part of this was Jen leaving and then my back issues, when I could not get in the pool until we figured out what was wrong. Then my cold. And the fact that I have not been aggressive in replacing Jen.

 

So I made peace with myself. Decided I would do two days on the bike, two to three in the pool. I would be doing all this. Remember Cathy can't drive the truck and Leo won't swim. But these are also the two things that Bruce really loves. I would not trust anyone setting Bruce up for the bike, other than me. The placement of the pads is crucial, running the computer, holding his knee in place.

 

Then yesterday Leo is let go at our work. His own fault in my opinion, he will never agree to that. The whole thing has totally set Bruce off. He said to me "This is too much input." Got out of bed this morning at 3:45am, slept on and off in his WC throughout the morning. He knows change is coming and neither of us can predict what is to happen next. So he has regressed yet again in just forty-eight hours. Leo was to come this morning, take Bruce and the truck; cash his check, get his errands done and then I was to be home about noon. Obviously Leo is working towards more hours here, but this week that was not in the budget. So he cancelled at 6am and I picked him up at 4pm as usual. And he tells me that he needs to do his errands before he goes back to the house. So, Leo, any issues that were discussed yesterday have been dismissed. You played no role in you losing your job. I said, No, you go back to my house and load up Bruce for your errands. Guess he just went back to the house. And then at 8pm asked me if he could work all day on Monday!

 

Well, I am just exhausted. Have a lot of work ahead. Bruce and I went out for breakfast. I tried to get him to lay down after our morning routine and then realized he needed some diversion. We have a great weekend planned, just he and I - no strangers in the house, no bike due to the holiday. But we can swim tomorrow, have his car show on Sunday and we had planned our groceries on Monday. I called Mary Beth tonight from work. She has a very busy weekend - Melissa's prom, dinner with friends. No responsible parent leaves town on prom night-lol! The last thing she needed was me, but we are sisters. I just needed her input.

 

I can't really use Leo other than the hours he already works. I could justify day hours, if he could do the pool. Cathy does most of my house work. Any appointments I can take Bruce with me. Leo uses mass transit and will have to take whatever is convenient to the bus lines, regardless of the hours. So his hours here may also change. Mary suggests I get another caregiver and then just let Leo go. In the meantime, I still have to get Bruce back on board. His recovery has to come first.

 

Our local farm market opens tomorrow-fresh, local strawberries. So that is a definite for the weekend and I do want to grill. I am going to try to get him out on the deck to work on his flower boxes. I do continue to do my daily walk. And I think a hunker down, just us and our priorities weekend is called for. I just pray he sleeps tonight knowing the next few days are just us and he will be getting out. Sometimes I think he is more affected by what I consider the peripheral stuff than I realize. Debbie

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Oh yes, Bruce is very much affected by the peripheral events. They impinge so much on his health and welfare. You are central to his well-being but so are the caregivers in a lesser way and so what troubles them troubles him. So maybe soft pedal a bit on telling him what is going on. I know if I did that to Ray in the early days he would switch off, turn over and plan to sleep his life away.

 

I am sorry about what is happening to Leo, it is life-changing for him and some of that will echo back to you and affect your lives too. Just hope that he can replace the hours he had with similar hours elsewhere so he can continue on with you. Bruce needs that continuity.

 

AND do get someone else who will drive and direct the swimming if you can, you cannot do it all alone, you are not Superwoman.

 

Sue.

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OH that wonderful left field --- this ball hit both of you right on the "noggin".....gosh i am so sorry.... in this area i have no advice and i've already shared myexperience . many failures trying to work and have a non family caregiver and poor bruce is scared to death.... very intellegent man ( with brain damage yes , but still very smart) knows this is gonna suck... but just as we get lemons we can make leomonade find the recipe!!! nancyl

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DEbbie,

You know that caregivers come and go. Yes, it is time to find somebody that can do the pool. I am sure that you will find somebody ... i have often thought of getting the lifeguards to do the water. they are teenagers at our pool and I know that they could do what I do. Fortunately, i have not had to resort to that. I have run into a couple of water therapists. I could hire them if I had to. I have not run into any caregivers that are willing to go into the water.

 

Yes, keep...exercises and therapies that Bruce likes and does not balk too much at. If it is water and the bike. then the water and bike it will be.

 

But, do take care of yourself.

 

it sounds like a great holiday weekend for you both.

Enjoy those strawberries and the car show.

 

Ruth

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Oh Debbie, I'm sorry that things are going this way for you. I suppose we are lucky, Dominica's caregiver is willing to get in the pool with her. I haven't been to the pool with her in a long time, but her caregiver took her last week.

 

I'm at the point where I think we need to find an additional caregiver.

 

We just bought some strawberries yesterday from a local farm, they are so good. We also got some locally grown lettuce. I'm looking forward to some more locally grown goodness!!

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