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Hope


Ethyl17

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It has been a very positive weekend. In making choices as to my time here and at work, think I really know the answer (thank you Nancy, took a while, but it did finally sink in - LOL).

 

Saturday was a beautiful day, finally after all the rain. Bruce read almost all day while home - again me being in the house. We loaded up the truck with the donation stuff and went for a ride and lunch out at the reservoir. Today was busy. We had a big shop. No we don't need it, but he loves going and does so well with his coupons. Tomorrow is PT-OT evaluations, so we had a lot to do after lunch and nap. Estim, needed to work on his flower boxes, laundry, we did dinner and weekly meal prep, then shower, weekly pill box refill. Yes, it takes twice as long, but the alternative is TV channel surfing, but after the "Daylight" conversation, obviously more work is needed as to cognitive recovery. I am convinced that he will lose it if we don't get back on track and he has told me he can not do it himself. So we will get some new routines into place.

 

Colleen, he made your Chicken Curry tonight. I let him use the Food Processor, so it is a bit less chunky than you would probably suggest, but he loves that thing and that will be dinner Tuesday night. He'll need to make your Hummus on Tuesday - he does so love it.

 

An interesting thing came up on Saturday, that I would like to share. Bruce's Botox was last Monday, so Saturday was day six. This is early for Bruce's dose to kick, but probably. While he was Estimming, he complained of shoulder pain. This is new. Even when he was sub-luxed, he did not complain of pain. I suggested he stop the Estim, but he refused. Now, Bruce Estims every single day. He does his own settings and after I place the pads, he takes over. I don't worry about the knee - anything helps, but since the arm-hand has moved so rarely after the stroke, didn't think much of it. Can't hurt certainly. So this was interesting. Of course I checked everything out and Bruce said he would consider an Xray.I offered to put on his sling - no go. Best news is that he has his OT evaluation on Monday.

 

The amazing thing, and this is where I may have hope: This arm-hand has hung off the side of his body for 4+ years. OT re-evals often, as you all know. There are days he never even thinks of it: hanging off the bed, the WC. I have to remind him to put it in his lap for safety. We tried using it to hold things down, carry things; just to remind him it is there. But he never developed a system, so it is just there.

 

But it has been so strange to see his interaction with the arm this weekend. He is working it constantly. I know it is pain (?feeling) and I know he is trying to resove it. All those exercises OT taught him that I thought went in one ear and out the other. Stretching, weight bearing, even putting it on the table. Just the knowledge that he knows it still exists and is part of him.

 

I told Julie tonight it is strange to find hope again. If it is acute, Bruce knows to tell me. But in my heart I am thinking this may be positive. I may crash by this time tomorrow, but for now, it is nice to know I can still have hope. Debbie

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well my thought-- even to justify trips and what may seem to be a "waste" to others is not only theraputic -- it might be the last trip, our last memory ... they were retirement plans , and hey baby it is here.. so if at all possible LIVE... although as i have said what i feel is not exactly enjoyment but if we do the motions maybe the emotions will follow... and my heart soars just to get a smile or a family memory made... and we never know which one will be the last..............................

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That last trip that Trev, Ray and I took to Queensland was an overall disaster and so hard on all of us but when last week I rang his old friend that we visited for his birthday he said:"Bless you for bringing Ray to visit us. The memory of that visit is so special to me." So even if it seems a waste to you it can mean the world to someone else.

 

Keep it up Debbie, the encouragement, the slowed down version of food preparation etc that includes Bruce so it is a shared chore, telling him the couponning and every little thing that he does is special. It is memories in the end that you will cherish more than you would think right now, just as I do my memories of Ray.

 

I hope the Estim and the exercises will lead to some worthwhile improvement.

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Sue --- exactly , in terms of traveling our thoughts are the same...and later -- much later even the not so great memories get that retrospect feeling of remember when..... this last trip one great memory for ALL was the parting of tables by bruce ... priceless although debbie probably didn't think so at the time... but it is a special memory to me... such a great stroke pararell to our new world... and hey i bet those tables are bit farthur apart now , it's not like they offered a ton of room..

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I really have to blog about all the things that happened in the last month, our travels and adventures and lessons learned. But what I'm getting in a nutshell is: Get out and show the world who you are! Don't hide your light under a bushel! Say it loud: I'm handicapped and I'm proud! My family got a good glimpse of Ray this weekend, in all his ugly glory. But he is slowly recovering, and that is a big part of it.

 

He never loved weddings, and driving in Father's Day traffic five hours each way through the Holland Tunnel did nothing to improve his mood, nor anxieties. But he did have his charming moments too, so all was not lost. Haven't seen my family since I don't know when (thank goodness for Facebook) and not sure when we will get back upstate again, but it won't be until towards years end, if then. I've been able to hide how bad he can be from family and friends, he does retain some basic manners, but now they saw how bratty he can be. Guess what, they already knew from the old days, and therefore kept commenting on how much "better" he seems, meaning like his old self. For better or worse! Meanwhile, they also saw why sometimes I have to hang up the phone when they call, or even not answer at all. And that's all good. As Nancy says, it could be the last time, and I am making more time for family now, because you never know!

 

So glad you love the "curry" (the Morroccan dish I think?) It is one of my favorites: delicious and exotic yet low calorie. You can't beat that combination! I make it for company to great accolades, but Ray won't touch it, sadly. He's suspicious of certain foods. Now hummus, he doesn't go crazy for mine, but I found a new brand that is made with different legumes, and he is head over heels for the Edamame version. When Nancy, Dan and the kids were here, they also voted it the best of all the flavors. I wish Ray liked healthy food, but at least I can slip some in here or there, even if I have to buy it. I made a rhubarb pie this weekend that was to die for (my family fought over it) but Ray refused it. Hey, more for me!

 

OK I'm being lazy, I will start my own blog in the next day or so. Sorry to hijack.......and there will be LOTS of photos to share too.

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No Hi-jacking here. I love it when everyone tosses out ideas, thoughts, experiences. Gets those brain cells stimulated and working in areas not always stroke related.

 

Colleen: it was the Curry Chicken Salad. Tomorrow night he is going to do the dressing and I suggested serving over some whole wheat tacos. He is actually excited about it. I didn't see that with Ray. I just saw someone who was so patient and kind to Bruce. Agreeing with him, laughing, encouraging. Maybe a guy thing - strangers, but family is always different. We talked today in therapy how Bruce will walk with my brothers and sister, but not me.

 

Nancy: I really don't thing anything in this recovery is a waste, except the incessant channel surfing - but I won't rant again - LOL. Dan seems so alive, interacting. I know why you put in the effort. As with Colleen and Ray, I didn't see any of the negatives and you ours. A blip in time, I know. But again, some hope.

 

Sue: Bruce has always loved his home. He worked so hard to get and keep it. Not that he doesn't enjoy a jaunt or two. But I think working on his self-esteem, independence is truly where he thrives. So will go with it.

 

PT-OT eval was discouraging. I'll post it somewhere. And I do have to blog about traveling and the choices I make. Good week all and thank you. Debbie

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Oh I forgot about the Curry Chicken Salad! That is always a pleaser with the ladies, glad to hear Bruce likes it too. Ray was spoiled from childhood with so much excellent Italian food made by Mom and his Grandmas, so he is ridiculously picky about anything else. It's good and it's bad (as his ex-partner used to like to say). Ray has been having a lot of all you can eat buffets lately, and that suits him to a T!

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