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Tonight I Feel Like a Creep!!!!


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Tonight I feel like a rotten creep!!!!!!!! waycon1.gif

 

We really had a bad day today. Things where really going good and I am still very hopeful that my husband will improve some day. I have not given up hope.

 

When we where eating lunch today the OT showed up to work with Chris. Chris has been having alot of trouble eating. He has trouble getting his arm up to his mouth and when he does either the fork or spoon or whatever he may have in his hand goes off to the left cheek, he can't always seem to hit his mouth. The OT did not give me positive feed back after she had watched Chris eat. This really lowered my hope. Then she started telling Chris that if she saw no improvement with him that she couldn't lie to the insurance company to get him more sessions with her. I still don't understand how they can make the decision that things are not going to work after 2 visits.

 

Chris got angry over her comments. At dinner this evening I really had a tough time with him. He was crying and really seemed like he didn't even want to try. I lost control over the situation and raised my voice at him which only made the situation worse. Finally I ended up helping him eat his supper which at this time I had to reheat for him, since he was crying for a long period of time and his supper got cold.

 

I'm having a really tough time believing that my husband will never get any better than what he is now. I have had several doctors, therapists and nurses tell me that he probably will not get any better, his strokes where too severe.

 

So I told Chris, once he finally calmed down and I got my crap together that he cannot give up - he has to keep trying no matter how long it takes. I really need to get my crap together - he has only been home 2 weeks - WHAT DID I EXPECT TO HAPPEN IN 2 WEEKS??????????? I really don't want to hear anything from anyone that is not positive.

 

So I apologized to my husband after I got him into bed - told him I Loved Him - and hoped he would have a good night - and tommorrow will be different. I told him that we need to work together and no more raising our voices at one another. I know that I am extremely tired and that this did not help the situation any. Tuesday - an aide from the nursing agency is finally coming and hopefully with her help I can get my crap back together and get some rest and be the type of person I need to be with my husband - not someone who gets angry and frustrated at him because right now he really can't help himself very much at all.

 

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That a sucky thing for an OT to say. Sounds like she's just in it for the job, and not the patients.

 

If you haven't done it yet, get the Sammons Preston Catalog. http://www.sammonspreston.com

 

Pages 29 - 31 are several nice ustensils and aides for helping people feed themselves.

 

At the early stages it's not about getting better, but learning to function with what you have. And don't worry about loosing your temper and raising your voice. It's part of being human, as long as it's not a constant thing.

 

Michael

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KJ,

 

I tell this so often on the board that regulars are probably sick of hearing it, but they told us that my husband would be "nothing but a vegetable for the rest of his life." They were so wrong!!!!! Don't believe that stuff the medical community is telling you. You just have to keep working and believing that improvement is possible and you have to keep your husband believing that his patience and hardwork will pay off. Because it will! I can see why an OT would say a person might not improve fast enough to keep their insurance in place but they are WRONG to tell you there will be no improvement or "this isn't going to work." We did a ton of homemade therapies and made enough gains on our own to get my husband into a rehab from a nursing home situation.

 

You will raise your voices again....it's very frustrating. So don't be so hard on yourself for being human. But work on finding the humor in stuff---it helped us a lot.

 

Jean

 

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KJ,

 

GIVE UP? LISTEN TO "PROFESSIONALS"? POPPYCOCK! THE BRAIN IS RETRAINING, AND DOING A TASK OR EXERCISE OVER AND OVER HAS LOTS OF MERIT. SO WE JUST STAY AT IT. AN INCH BECOMES A FOOT, A FOOT BECOMES A YARD, ETC.

 

THIS A STORY ABOUT MY DAUGHTER, THOUGH NOT STROKE RELATED, SHOWS HOW INSENSITIVE AND WRONG A PRO CAN BE. MANY YEARS AGO, SHE HAD A CASE OF "SCHOOLPHOBIA" IN HER JUNIOR YEAR OF HIGH SCHOOL. SHE HAD A FEAR OF GOING TO SCHOOL AND AFTER MUCH TIME WITH A PSYCHIATRIST, A DECISION WAS MADE TO PUT HER IN A MENTAL HOSPITAL FOR THIRTY DAYS. SHE WOULD BE ON A FLOOR WITH TROUBLED TEENS. WHEN THE DOOR SLAMMED BEHIND US AS WE LEFT HER, I HAD A BIG KNOT IN MY STOMACH.

 

SHE WORKED HARD. A FEW DAYS BEFORE HER RELEASE, WE WERE CALLED INTO THE DIRECTORS OFFICE FOR A PROGRESS REPORT. WE WERE TOLD SHE WOULD NEVER BE PRODUCTIVE AND SENDING HER TO COLLEGE WAS A WASTE OF MONEY. WOWEE!!!!!!

 

WELL SHE CAME HOME, WENT TO SCHOOL AND HER GRADES WENT UP. IN HER SENIOR YEAR, SHE WON THE TOP JOURNALISM AWARDS. WE SENT HER OFF TO COLLEGE, AND GUESS WHAT? SHE GRADUATED. TODAY SHE IS MOM TO TWO ADOPTED KIDS, AND GETTING THEM WAS NO EASY TASK. BOTH WERE OPEN ADOPTIONS AND THERE WAS MORE STRESS THAN EVEN I COULD HANDLE. SHE'S THE BEST CHILD ( AND ADULT ) A PERSON COULD HOPE FOR.

 

LOOK, MY WIFE STILL YELLS AT ME. I USED TO GET ANGRY, BUT NOW I UNDERSTAND HER FRUSTRATIONS. THIS WHOLE THING GETS ON EVERYONE'S NERVES.

 

I'VE GOT TO START SLEEPING. I JUST GO ON AND ON IN THE MIDDLE OF THE NIGHT. SWEET DREAMS.

 

MARTY smile.gif

 

 

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Hi there, another stroker here (I'm 45, chiro caused stroke tore artery), while I'll say everyone is hit differently is true, it doesn't substitute for a continally positive atmosphere. (at times, that's SO hard but important, for both of you)

 

In hosp (3 weeks) my DH slept in a chair and on a cot EVERYDAY and when in Rehab of Chicago he drove EVERY NIGHT for 3-4 more weeks (during the winter)after working(5pm) EVERY DAY!!! He had over a 100 round trip(on my new car!) commute everyday while in Chicago DURING rushhour (which is no picnic here).

 

The first year is the worst, and I remember it like a fog, the second year got better and this 3rd year has been almost like normal to me. I was told I'd never run again (HA)and while I lose my balance if I spin around from the dishwasher, so I gotta not to too nutsy, if it hadn't been for my "never quit, or "deal with it" positiveness "I would come back" husband, I would not be doing as much as I am...I OWE it to my husband. And sometimes I doubt ( but then hope) I could be there as much for him as he was for me.

 

Sure we had our days when we both got down, but we never let it be for long. REST and sleep is the elixor of the recovering brain, exercise also helps, get those muscles moving... I had been hit totally on left side, now you could not tell..Strokers get down too, I hit myself over the head for being short with the kids but its not like it used to be--not as much-stimulate the brain mentally , and physically but rest equally too. And NO NON POSITIVE therapists-(precheck if possible, ASK for who's good) to find someone he'd fit with (personailitywise)and then chain her to your house!! They were another lifeline to me.. beer.gif This too shall pass, give it your all and pray!!! whatta got to lose- it helps to have some kind of faith! waycon1.gif

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