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In a Zone....


mynorthstarmaxwell

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I really dont know what to feel at the moment....I've worked so hard to get things right for charles once he moves down here with me. I've lined all the necessary Doc's for him and searched for PT,OT and ST for him. It was always an ordeal to get him to any appointments, always finding myself arguing with him, since he is stubborn and we are always running late for his appointments.

He no longer has PT because he doesnt like any of therapist that has worked with him, and wont do any of the exercises they've asked him to do. He had ST two days a week, but we have cut it down to once a week because he tells me ST "sucks". He also doesnt do any ST homework and when I try to get him to do it, he gets frustrated and angry with me. He's now only seeing OT once a week for his right arm. He' so focused on getting movement back on his right arm but dont want to go more than once a week.!!

Somedays, I get so angry because I rush home from work to get him to his therapy and he acts up..so I always end up making excuses and cancelling his appointments. I just want what's best for him but he's not the driven person I used to know! I try to do things to get him motivated to wanna write or spell but he refuses. All he wants is to do his Lego's, listen to music and watch ESPN. Its making me want to give up hope...I feel exhausted because he's not driven to want to get better.

Its the same routine..he stays up til 2am, sleeps til 12:30pm or later. I get off at work 3:15pm, rush home to him and its constant catering to his needs til I go to bed around 10 or 10:30pm. Im living for the both of us, havent seen many of my friends in like forever. I mostly txt them. My family are all in CA, I do miss them very much. His parents are up in PA, they never ask how Im doing? or if I need anything? they keep making excuses when he ask them to come down and visit us in MD.

my heart aches...I feel like crying, screaming and throw in the white towel. I just turned 40, been with him for 16yrs, still not married, no kids, no home. I just wish he would say to me "amy, I want to spend the rest of my life with you, lets get married, have kids and buy a home" ...but til this day, still havent heard those words. We are engaged but no set date yet, he's worried if we get married his disablitly check will be low, I figured only reason he would know that is his mom had said something to him. To me, its not about the money, its the LOVE i have for him.

 

Its 5pm...I'm going for a run to help with my stress

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It must be awful to deal with someone stubborn like that. I don't think I've ever asked Bob if he were going or wanted to, I just said, "we're going to blah, blah now". He just goes along with whatever I say. I think I'd be telling him, "look, I can't do all this forever, you have to do YOUR part to make it easier on me, because I'm feeling like I am burning out". Bob does watch a lot of TV, and I don't care, so long as he's done whatever therapies I think is needed for the day. One of the main things that Bob worked for is to be able to at least walk in and out of doctors and therapy. He needed to realize that it hurt my back to do the wheelchair and I wasn't going to enable him to just be happy to be pushed, when he could be realizing that he needed to help me by being able to do it without the chair. Don't fail to express to him what YOU need help with and can't just keep doing.

I get the kichen duty too, seems it's always dirty and full of dishes and he's always calling for something - I hear it is the same at retirement, stroke or not.

 

I don't think disability is based on being married and if you have income - now medicaid or medicare might be. But disability is based on how much the person drawing it made and put into it.

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I have not had many problems getting Larry to take his meds, go to appts or therapy. The problem I have is here at home and getting him to do his exercises or just walk around outside. The other problem is getting him to eat. I know there are others here who have had the same problems with the "acting out" their survivors do when asked to to therapy or whatever. You can only do so much.

 

I hope you can get more help with this. Sometimes these strokes are just as hard or harder on the caregiver. Larry never "acts out" or loses his temper but I do. lol

 

Julie

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Amy: while Bruce is a lot like Larry and Bob, mostly does what I have on the schedule for him, I will say when he became overtoned at nine months, it was like his recovery was starting all over again. He was depressed and angry. He said to me "no more." And I had to go with that. Jen could still get him to swim a couple of times a week, but that was it.

 

Amy, he worked so hard those first nine months post - some sort of therapy every single day and swimming on Saturday as well, then to have the overtoning.

 

At that point, I said OK. I went back to work part time. Bruce had caregivers here. When he wanted to exercise and swim, they were on board. We investigated some other options, tweaked his antidepressant and spasm medications and holed up for the winter. It took probably 6 months and into Spring before he was willing to try again.

 

I would say you have made the compromises with Charles, what he is willing to do. And I agree with the rest of the caregivers - this is the deal you made, you will stick to it. No arguements, no fighting - you will be ready to go, on time or it is a no go.

 

If he can function without you or a caregiver most of the day, you need to step back. You get home, into comfy clothes, maybe some laundry and start dinner, clean up (personally I would insist he at least help with the dinner clean up) and you are done.

 

All of us here deal with very specific issues but in sharing what works for us, most of us can tweak or use at least part of the info - incorporate it into our own individual problems. But I think the one thing I will tell you that was hardest for me is that I can not MAKE him recover. He either will or won't. When he asks for more, I am right on board. But Bruce understands now that it is not my job, it is his job. Anything he needs from me, he gets but he has to put in the work.

 

Maybe time to step back, go with what he will do without a fight and refocus on you home and yourself for a bit. He won't starve if you leave a sandwich and some fruit and say your dinner is in the kitchen. Hopefully, like Bruce, he will start to take some interest in his recovery.

 

Best. Please do get some rest. And do let us know how things are going. Debbie

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I just want to add my predicament for not having therapy for a long, long time now! I had my eye operations back in May/June and couldn't lift anything.

 

That really hurt my abilities to do anything and I'm paying for not having therapy. I'm in therapy now for 8 sessions and I hope to get back to being normal abilities again soon!

I'll never do that again!! So he is going to have a very hard time getting back in the groove of doing for himself physically.

 

 

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I wish i had something "helpful" for you... Dan has been the most stubborn - jerk - but of course he has very low cognition - so mostly it is instinctual. But we had 4 kids together and almost 30 years of marriage...... so my commitment is very obligation bound... and yes love as well.... But Dan 's family has no desire or care to partake in his aftercare, havent seen his mom - or anyone since sometime in May ?? and he has family about 1 hour away... but at least they are not meddeling . ... sounds like you have bothe ends of the stick poking you -- no physical help from , just the verbal " mother in law " with opinions but no action.... gotta love that... not even a little... well hang in there and no judgement here.............

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I have read your post and thank you for sharing that with us. I am 70 years old and have 3 mild strokes the last being 2 months ago. i was truly disturbed by your story and the situation you must feel that you are in. i am sure that for some stroke survivors the caregiver has a considerably harder burden.

if i can tell a little story. many years ago my family and i lived in a house with a pool in the backyard. my son B was about 8 at the time and i had just finished putting massive amounts of chlorine into the pool in the summer opening. it was not unusual for B to somewhat hassle me and this day he said "can i swim now" i had previously explained that after dumping in the chlorine we had to wait a week. rather than repeat the explanation i said "well if you wish b but its your skin not mine" b did take then the responsibility for his skin and did not jump into the pool. the message of this little story is that at some point a person has to take ownership of things in his life that he has control over just as b did that day at the swimming pool.

 

if you give your partner the ownership of his recovery, you may not like his behavior, but its now his choice and not yours.

 

best wishes to you and i do hope that things will be well with you.

 

david

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Oh dear, I hear your pain. Have a good scream, cry, then wipe your eyes and say enought is enought

Time for tought love! So Charles, no more fighting with you, dont want to go too your apps, then so be it. No more runing behind him, after you come in from work, say "hello" get dinner, clean up ,make sure he is safe, then go and read a book, relax by phoning your friends, before you lose them. My son tells me "do you".

 

Take care, keep posting

 

Yvonne

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Durn... my idea of tough love would be he's going or I'm not doing anything for him. I won't keep busting my hump while he lets himself deteriorate, needing more and more for me. Him quitting would mean he was ready to do things himself!

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Good Afternoon everyone and thanks for the feedbacks....I am doing much better today. Some days are much better than others. And SandyCaregiver, I think you are right about him ready to do things for himself, because from what I see at his ST sessions, its boring him and he's not feeling like its helping him much. He acutally does better with conversating with me. I do know it will be a long journey for both him and I, and from what my oberservations of his progress....he's doing WAY better. So, baby-steps...

He does dress himself, able to put his shoes and leg brace on, take a shower and helps out with loading the dirty dishes in and putting away clean. And when I do the laundry, he helps with the socks and putting his laundry away...so I know he's trying.

 

I just needed a venting session...hope everyone is having a nice weekend

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Amy: Oh boy, we have all been there. Just bang my head against the wall - LOL. And that is truly it honey. Just let him be. Many of us here are finding out lately just how much our partners can do if we, as caregivers, just step back.

 

Baby steps, yes. And do come often share and yes, vent. All of us do that. Glad you are feeling better. Debbie

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