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A beer and a good game



I was daydreaming today, kind of reviewing the last four + years. I know all of us were advised out the gate to stress therapy. And really Insurance Companies want it over and done with. I am wondering if they have stats hidden somewhere about all of this - and since it involves money, I am pretty sure of it.


The thinking is get a stroke victim back on board immediately. And I don't disagree with that, but as we get into this and educate ourselves and share stories, most of us Caregivers, I think, would agree that until that brain swelling resolves and reconnections are being made, most of the complex recovery doesn't really start until about a year post.


Educate us to get them out of bed, showered, dressed. Set up those home services that are paid for. Retrain elimination as need be. Get the standard medications on board and then let us figure out what is needed, get some professional input from our Home Caregivers and then let us tap into the money allowed us towards recovery.


Bruce needed Speech immediately. Julie's Larry did not need it until about year two. Both very different reasons, but the same therapy. Colleen's Ray and Nancy's Dan had to get seizures under control before they could consider PT and OT. Regulating blood levels of any medication takes months, if you get the right one right out of the gate.


But then I was thinking about the guys. Guys think differently. Their priorities are specific. As wives of many years, we communicate differently. A look, gesture, smile. Verbal communication is different. I do know that Bruce hates when he hears me say "We have to talk" LOL.


I reflect on Colleen, Nancy and I at the Casino. All three guys very different, except maybe not. Dan enjoying the slots, Bruce kind of going back and forth between groups, Ray just liking people watching. I am thinking if we put all three guys in a bar. Ask the Bartender to put on a good game - any game. Ordered each of them a beer (none really drink beer right now, but again a guy thing) some hors d'ouevres-picking food; Colleen, Nancy and I could have left them, had some time to meet and share. None of us are gamblers, but sit outside with an iced tea and just get to know one another. Then do a welfare check at about an hour and a half.


All of us noticed how well the guys communicated - aphasia and all. Thumbs up or down, smiles, head nods. and I am not saying they are simple, but I think maybe men try not to think too deeply, especially with other guys. They have their partners and Besties for that. Guy to guy, it is really fun and camaraderie. If they had to meet pre-stroke it would have been the same thing.


I am thinking that I was thinking too complexly - adding layers where they were not necessary. Simplicity, maybe. Get yourself washed up, teeth, morning paper. Nap, exercise. Maybe some reading, balance checkbook another day. Maybe that is all he is capable of right now. If he can toilet himself safely, really how much more do I need right now. Just some thoughts. Debbie


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Debbie/Ethyl - I'm reading the last paragraph, and I think it sounds good, but I'm not sure what it is being compared to what you are listing compared to what is more layers.


I know, Bob can't be in boot camp everyday, or his life will have no normalcy of just 'being'. We want so bad for our guys to be 'normal', sometimes not realizing that normal people sit around and just zone out and enjoy decompressing - which I'm sure they need, because everything is so much harder and intense for them. He goes to PT & SP twice a week, and I I wish we had more time to squeeze in more therapies of every kind every day, but we kind of have to pick and choose, like either the lyngraphica or the e-stim or the trip out or special exercises. If we tried to do them all everyday, he'd be so stressed out that he would hate his life. If he didn't have therapy out, we would make some similar schedule at home, but those 2 days are about that already now, so we don't do it all everyday. He can't even take a shower everydayf, it's really hard for him and I just have to judge what would make his life miserable, as I don't want him to live there!


We had therapy today, then went out to La Rosa's. He has really bloomed into being willing to go out in public this last month. Now he's watching football, and I'm leaving him alone to enjoy it... will probably go give him a back rub(he loves) sometime later, while he sits in the whl chr.

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Except Sandy, they are in boot camp every day. Their brain was injured and every single day is recovery. What I meant was that there has to be trade offs. I speak often with other Caregivers. We all make trade offs that are specific to our partners. But there are some things that have to be stressed. Bruce's foot turns if he is not in his AFO. AFO is difficult - you know that with Bob. Bruce can not walk independently without it. Bruce understands this, I am 100 lbs soaking wet. I will not be able to push him in a WC much longer. But somehow this is not a priority for Bruce.


My thinking is easy. Stress the basics. Those things for independent living first. If he can get around the house safely, takes care of BR issues, what do I care if he channel surfs. Except even Bruce knows this is boredom. I try to space out other projects, but at the end of the day, if he has done his basic work-walking, meals, toileting, wash up and teeth, maybe I should just let the rest of the stuff go.


I know when he is happy, when he blooms - as you say. That won't allow him to stay in his home, with some part time overnight help, if something happens to me. Yes he loves his outings, family in to visit, being off the treadmill so to speak. But with all of us, children are grown and have their own lives. If Bruce can not function in this house independently he is doomed to a SNF. So I am back to basics.


I find if I do a "treat" day, he loses focus. But have tried to incorporate projects. We can do lunch - get your coupons out and throw away the expired and then find something you would like to do. Problem solving. If I am not in this house, what are you going to do?


Look to your Bob recently: get up the path, how to function with the hemi, what is my goal, how do I get back down? Problem solving but on a manageable level. Debbie

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Bob didn't have a 'treat' day off. He went thru 2 hours of therapy, and THEN went to LaRosa's, and NOW he is resting in his wheelchair, watching tv or channel surfing. He's done today, and now has time off, like normal people. The blooming is not just him having fun, it was referring to how he has finally accepted to be seen in public, and let go of the terror that people who knew him before, would see him 'like this'. It is as much therapy to accept yourself and get out there, as anything else. Going and doing, will make him stronger and happier, and more mobile. He will feel more like the old Bob. Most places we go he is walking from the car into the restaurants, dr/therapy offices, so the more he goes, the more he walks. A wheelchair is not evoked unless distance is prohibitive, but most our hops are easy in and easy out.


Now for Bruce who is used to going out everyday, it's different, but Bob has had himself sequestered in here since his stroke. For him, getting out is therapy! Look! I CAN do this, afterall! I CAN go to the woods, I CAN go out to eat, I even CAN go to a retirement party for the friend of 40 years I worked with! We are planning to do this Friday the 30th - before he would refuse anything like this. He is now ready to try to actually be Bob again, not just a handicapped person who must keep trying to be normal before he can do stuff. Kinda like people tend to think "I'll go out more when I lose weight" - losing years of their lives, waiting to be like they think they should be, before being willing to live. He is finally not waiting and now willing to live his life - wonderful! Bruce has not had this problem, but been on the go a lot.


There was a time when I tried to keep up with an active all day of therapy, then try to get in what you missed that night. But, that left no time to live the life you actually still have. It's not do every therapy everyday, but trying to keep track of hitting all of them here and there, while living life around them.

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I agree with Sandy, it is about living the life you can live now. But that for me is hindsight. I did try and fit is all in, therapy, exercises, stimulating experiences, encouraging visitors and creating family days. Then there were days out, days designed to make the most of summer etc.


I worried about what was the right way to encourage him to participate, just as you both do, and sometimes I overtired and stressed Ray so much that we then had to skip a few days of activity until he recovered and got back to being willing to excercise again. So I finished up building an occassional "down day" into his schedule. After all working folk have those two day breaks called "weekends", so we should too.


We are also programmed by the first therapists we dealt with, so if they said: "Ray must exercise every day" we did that, if they said:"exercises but with breaks" we did that. Some recommended stimulation, in the form of excursions or just getting out and about, some in the form of reading or being read to (which is why I always read to Ray in the nursing home).


Our experiences have all been different depending on both the person we were dealing with and the advice we had been given. It is all so variable isnt it? So all we can do is give it our best shot.

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You are right Debbie, Sandy and Sue. Our survivors need stimulation in many different ways. Exercising is good but too much and Larry goes into a shut down mode. That is why therapy is so good to have as Larry will cooperate with the therapists even though they exhaust him. lol The problem I have is just getting Larry to WANT to go out and do different things. He is content just watching TV. Too hot and humid to enjoy much of the outdoors now tho. At least he is always willing to go to church!



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Debbie, I'm not sure you realize that I agreed with your initial post, I was only asking for a comparison of what you say is enough now, compared to how you thought of it before... like what you used to think he HAD to do every single day. The difference between how you are thinking now, compared to before. It's possible other people already know your previous routine, and I'm out of the loop.

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No Sandy - that is what I thought and your post led me into another direction, but really the same issue.


The deal with no Caregivers was that Bruce had to hold up his end - get his chores done. I now have no help here (I do have Erma coming in once a week) but did need to make Bruce understand that he needs to contribute here as well. Because I know Bruce and Sandy, I do take a lot of the blame here, because it is all he knows - Bruce will sit and channel surf until I get home and direct him.


But today is a great example. I did toilet check at 8:15 am. I left some cards for Bruce to go through, but left them in the kitchen and told him there was a package for him on the counter when he went out to do his dishes. His friend Walter called and they talked about half hour. I got home - and already he was exhausted. So lunch, nap, exercises (these are the independent ones from PT - about 20 minutes), shower, Estim, mail and reading. He has to set table for dinner, help clear and then set up for our breakfasts. Do his teeth and floss, then walk to bed. He started with the TV nonsense at 3:30 pm. And this happens every day at that time. He can't explain why. So I had him check his little fridge and bring me anything that needed refilling. I went out to prep dinner about 4pm and again I am thinking he is in lala land yet again, but really Sandy that was a full day for him, including all the new problem-solving.


My thoughts previous to my blog was lets get outside on the deck for a bit, a short walk in the street (Bruce to walk - altho I have said I would take him in the WC just to get out). And another part of me knows he has had enough.-decompression time as you said.


And yes, I agree - play to their strengths, go with the openings they give us. Debbie

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He sure is able to 'do' things that Bob would have no idea about. I do have to say, but never did those things before, and was a bad learner! So, there you have plain old difference in people before a stroke ever came into the picture!

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You are getting the idea, now Debbie. :) I asked Charlie once what he was thinking and he told me that most of the time there was nothing on his mind...he wasn't thinking. Big difference from me (or most women, I think) who are always thinking about what needs to be done....dinner, chores, his needs, etc. Men are simple, uncomplicated beings - not stupid. Keep it simple.

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