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"Mad" therapy, and more


1967stingray

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This summer has been a banner year for travelling and socializing for Ray and me. Not just since the stroke, but in our whole lives. We have been so many places and seen so many far away people. I finally have a few weeks ahead with very little planned, and I'm going to do my best to keep that way. Hopefully we will be ending up the summer in a mellow mood, able to look back and be grateful for all the fun we have had. I'll write about it in bits and pieces over the next few days: We do have a brand new friend stopping by later to help us finish off the last of my cannelloni and meat sauce, sort of an extreme happy hour, but that seems like a breeze to me right now.

 

Our latest adventure was a four day visit from a priest I became friends with on the internet, not through religion but rather food. We have been talking for at least five years now, so when Ray had his stroke he said daily Masses for him and was very understanding since his mother also had suffered something similar, ending up in a nursing home. I always felt that was part of the reason Ray's recovery was a bit better than originally predicted. Father Dave is an enthusiastic devotee of cooking (and eating well of course) and we are always egging each other on. He is the one who is encouraging me in my foray into canning jams, and getting back into baking breads. We had a very "foodie" time, comparing notes and ideas. Ray wasn't thrilled but why would he be? He did get to eat well though, both at home plus when we got treated to an exotic meal out the last day. Lots of sightseeing, beaches, shopping, we did it all. It was something different, which can never be all bad.

 

Anyway, just before the priest arrived, I was frantically trying to cook and clean in advance, as usual. Ray was being crabby about the impending visit and wanted something, but the usual "drink? pills? bathroom?" were all angrily rejected by him. So I said, whatever it is, you can do it yourself, I'm not supposed to be waiting on you hand and foot anyway, it's holding back your recovery. Then I went upstairs, before I said anything worse. I hear him get into the wheelchair and move across the house, which he can do fine but usually prefers not to. So I was curious and went down to see what was up. He had gotten into the bathroom and was sitting on the toilet! This was like a miracle to me. I even told the visiting nurse, sure she would chastise me for not being with him, and she said, you still help him in the bathroom? That's crazy! He can do it himself!! Stop enabling him!!

 

So I'm telling the priest, and he told me an interesting story about his brother. He was totally paralyzed from the neck down in a car accident. They were just going to send him home after he was stabilized, since there was no therapy they could give him at the time. Then the day he was to leave, he moved one of his fingers, so they sent him to a rehab place instead. But he was depressed and wouldn't cooperate. Then they found the solution. If they got him mad, then his adrenaline kicked in and he would suddenly give it his all, as if out of spite, just to show them up. Guess that's what happened to Ray too, he forgot he supposedly "couldn't" go to the bathroom himself and just did it, in a fit of anger. I said to my friend, maybe we should patent this idea. "Mad" therapy, a new psychological direction in modern rehab!

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In child-raising there is a thing called "judicious neglect", like risk management it doesn't always work but if they don't try it how do they really know they can't do it?

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That sounds like my Mom's philosophy bringing us up. We all made it, and are pretty much fearless! Thanks Mom, for letting us spread our wings.

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I hear you on letting them do things without our constant help. However, how do we know they are not going to fall in the BR or fall getting up from a chair. Larry has fallen a few times and luckily has not been hurt badly. The bathroom falls are the worst. I have heard horror stories since Larry's stroke of those who did fall there. Sorry, not trying to be a killjoy but just needing to know how to handle this. My mantra is usually "you can do this yourself". Also, I tell him I may not always be there to help him up!

 

Julie

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i have seen ray --and he is a real "stinker" lol--- he is so much "sly-er" than he lets on... he wouldnt do it if he was not sure he could-- but he does very much enjoy haveing colleen all to himself, just like my dan with me...but dan has a over estimation of his abilities so he tries things he shouldn't.. dan wont transfer to the BR as ray does .. but would walk into the br and his balance is not good... it is hard to know - what is good for them to do for themselves and what is dangerous... ray-- if he did it than he can do it... cause he is one underneath it all smart guy... lol cause i can just vision this playing out !!

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That's the thing, Julie. He has never fallen anywhere for the last 2+ years since he's been home...UNLESS it's with my help. There have only been two or three incidents, and they are always because of me, not him. Anyway our downstairs bathroom is so small I don't think it's possible to actually fall down in there. There is something to grab every 6 inches. But I know the general fear about bathrooms in general, which is what made me never push him in that respect. Every once in awhile he does something without me knowing, and when it's over and well done, I'm glad it happened.

 

He has no right side to speak of but he manages well, and everyone comments on it. He works his leg from the hip. But I do still have that Adult Protective Service mentality/fear. I'm not saying it works for everyone, but I think he's actually better off without me sometimes. Deep down inside, he's a scaredy cat.

 

And Nancy, unfortunately that so far was a one time thing. I'm still helping him every time since then. Oh well. Maybe someday.

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colleen of course it was a one time thing !!! i am just laughing so hard cause i can see this whole senerio play out in my head right now... there is no way ray is gonna decide to take himself - and realistically nor should he, but i can see the little "hissy fit" ... gotta love ray -- he is one character. just like all our loved ones... those personalities are in tact ( sorta) but amplified ... there is a reason we are still standing with them... well pushing the chair behind them...

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You're right about that. Recently, I can get him to put the AFO on when we're going somewhere new, by telling him if there is no ramp he might have to walk up the steps with his cane, or stay in the car. So it is occasionally worn all day now. He still does the stairs at home without it though.

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that story from the priest is absolutle true. I became ill in the late 80's and pretty much my health and life went down the drain. After some years of not being able to do anything, I found I could do a little bit. I hired someone to come and put in a downstairs bathroom so I could go downstairs and stay there. The remodeler was, like most, maddening. At night I'd start going over the stupid things he did, and said, and what I said, and what I WISHED I'd said, all outloud. In a little while, I'd become infuriated, and have energy I didn't have before, and be able to load the dishwasher, or some other small job. In a couple of times, I realized what was happening, and from then on out, whenever I needed to something, I'd think about the remodeler on purpose, so I'd become enraged and use that adrenaline to do my job. Actually, the only reason I was able to drive myself to do the massive amount of work needed to clean out the old house, was because of the extreme terror I was in that I wouldn't get out in time. As soon as the closing was over, I woke up the next day, flat as an old baloon and without the adrenaline behind me, I could see what a desperate state of exhaustion I was in.

 

I also notice that I'll be crippling around here, in a lot of pain, and if I see we are running late and the adrenaline kicks in, I can move better, with less pain. I've been thinking about that the last week, and how I wish I could get that adrenaline to help me move better, WITHOUT the stress it takes to bring it up!

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I wonder if they sell a pure adrenaline pill. Sounds like something athletes would take. I do the same thing, when my house is getting a little too messy I just invite someone over for dinner, so I have to straighten up. It's so nice to have natural energy, but there ARE side effects too.

 

Oh OK then, interesting. http://en.wikipedia....iki/Epinephrine Maybe could be part of therapy?

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Colleen: here on the North Shore, we call that "Bruce Stubborn". Same, same. In all fairness, I have seen very little of it over the past 30 years. But about a week home, Bruce's best friend came to visit and made me promise I would not punish Bruce for Bruce Stubborn.

 

Bruce is usually the easy-going, laid back guy you all met. But when he gets his dander up - watch out. I have seen him actually get in the car and drive home when someone was trying to drag him into a conversation he did not want to get into. The one thing with Bruce is he hates confrontation. Post stroke he spent hours trying to get the affected arm-hand moving. He wanted the chair remote and it is on his affected side. Unfortunately that has not continued.

 

I am going to blog the progress as to Bruce staying home alone. I don't know if this would work for Ray. They are two totally different personalities. But I am dealing also with the safety issues and BR for us, right now, is not on the table. In all fairness, Ray, in my opinion, moves so much easier than Bruce. He is so less stiff and seems to have good tone, but not overtoned. I only spotted him twice, but that is what I felt.

 

Bruce does OK with the AFO or just good walking shoes. Bruce's knee is basically locked with the over-toning. Still, when not just short distances in the house, he has to wear it. Like you, we never know when he will have to go some distance and definitely needs it for stairs (again the knee issue).

 

Rock on baby! I am so glad your visit was terrific. I know you were so looking forward to it. Something for Colleen, plus being able to show Father Dave the sites.

 

Never mind the drugs people! LOL. Side effects are worse than the rush. Terry can attest to that. Debbie

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Oh an epi pen! That's got to be a lesser version of the needle that John Travolta used in Pulp Fiction, right?

 

Well don't worry, I'm not going out looking to scam one, but glad to know I'm not the only one that knows how to trick myself into getting a little extra free energy!

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