Question about acceptance

[caringfor5]

Hi everyone,

 

I have a very unusual question or it seems unusual to me....What I'm wondering is has anyone on here who has suffered a stroke or cares for someone who has....decided to stop going to therapy and move on to acceptance before the therapists have discharged you or them?

 

The reason why I am asking such a question is because although I want Mike to continue on with therapy and to keep trying he doesn't share the same view. He doesn't ever or rarely wants to do therapy at home. He complains on the days that we have an appointment for his therapy. He usually does very well but still loses his temper while at therapy. If I ask him to try to do some kind of therapy type stuff or to try to do something I know he can do (walk with walker, stand during transfer, etc.) he says I'm making things difficult and why do I always have to be this way towards him, why can't I just do it and quit being such a b****.

 

I really don't know what to do....it seems absurd to me that someone would not want to get better and I really feel that he does want to get better but he doesn't want to put the work in to get there.

 

I am starting to come to the conclusion that I am the only one fighting the battle to keep him in therapy and he could care less if it stops or not and also could care less whether he lay in bed all day or not. Everything that I try to push him to do causes fights and I'm starting to think that both my life and his would be better off if I just accepted that he doesn't care whether he gets better than what he is now and just take care of him as if he couldn't do anything for himself.....I know that sounds absolutely ridiculous but I'm just tired of fighting with him.....He won't walk at home, could care less if he feeds himself, dresses himself or does anything for himself for that matter even though there are many things he can do.

 

Anyway, I basically am just wondering if anyone else has dealt with something like this.

 

Thanks for any input.....I'm really at the end of my rope as far as patience on this subject and just don't know if I should just throw in the towel and move on with our lives or should I continue to push even though its causing him to tell me that I'm making him miserable.

 

Tina

[dstraugh]

Tina,

 

As a stubborn Irish/German/English Survivor, I can only respond to you from what my experiences were. When I was in rehab for 30 days I remember I was a stubborn "B----" as I tried to "cut" corners during therapy. I felt I would just wake up after a night's sleep and be back to myself. I had a wakeup call when the social worker wanted me placed in a SNF. She said I couldn't live in my townhouse as I would "never" climb steps to 2nd floor. Well, for me, my stubborness kicked in - I went home and between some home based therapy sessions and my daughter's :cheer: :cheer: I began to climb the steps. It wasn't pretty, but I did it after about 4 months. Until that was mastered I slept downstairs in the livingroom on a twin bed and used a bedside commode. My daughter really :cheer: :cheer: the first time I used the real bathroom on 2nd floor(she was the official potty dumper every day before/after school)

 

Don't give up on Mike; hopefully, soon, he'll have a readjustment in his thinking. Keep your chin up but remember to take care of yourself too.

[caringfor5]

Thank you for the reply so quickly.

 

I should mention that Mike has been home and in out patient therapy for 11 months so this is something that has been ongoing for quite some time.

 

He's basically acted this way about therapy from the beginning...it is my feeling that that is the reason why he was only in in-patient rehab for 30 days before discharge....he wouldn't co-operate so they discharged him.

 

Thanks again,

Tina

[bstockman]

HI Tina, Does Mike have pain when he does therapay?

 

My PT had me do quite a few things.. one was sorting jelly beans from a large jar into 6 or 8 cups by color. I don't know why... but I HATED doing it. My attention span and focus at the time was about as large as a gnats... I would say I don't like doing this, he said I know,, I have the timer set and walk away...

 

I now understand why.. to improve coordination and fine motor skills.

 

I didn't mind any of the other exercises..........

 

Maybe you should set up an appointment for some counselling, is he on any anti depressants? Sometimes just the effort of getting showered and dressed and I was tired.. but I was determined to walk and use my arm.

 

Is it safe to leave him for a few hours.. so he would HAVE to do some things on his own. without you around. Forcing him to do things he is capable of he may get some independence and confidence.

 

Best Wishes.

[dstraugh]

Tina,

I was in in-patient for 30 days as that's what my insurance covered. My therapists were patient, yet pesistent and I complied even with things I hated (group game of balloon volleyball- YUCK!!! LOL) It helped too that I made a friend (fellow patient) and we encouraged each other. My outpatient therapy continued for awhile until insurance company stopped it since I maxed out my quota. Like Bonnie suggested, maybe some counseling would be beneficial or talking to doc about antidepressants for Mike. I don't know what his deficits are, but do you relate to him the posts you read here? Is it possible for him to "vent" his feelings through posts/blogs? We're not professioals but maybe having "3rd party" to vent to would help him too.

[caringfor5]

Yes Mike is on an anti-depressant, he has been since about a month after the stroke....we did a trial of taking him off of it to see if it was even beneficial to have him on it and it definitely was beneficial since he was way more combative and upset without it.

 

He wasn't a couch potato before but he had a hard time sticking with things that he started. Unfortunately any negative behavior in his personality pre-stroke seems to be magnified ten times now.

 

We haven't been doing a whole lot besides therapy, mainly due to the fact that we just recently got a wheelchair that I can put in the car....the one he came home with doesn't even fold and weighed what seemed like a ton so that kind of kept us housebound other than going to doctor appointments and therapy.....but now we do have a better chair and we have a handicap parking placard for my car so we have been doing a few things like going out to eat and i plan on trying to get out to see a movie or something. I do have fears that he will have a outburst though if he gets frustrated with me about something and that makes me afraid to get out. We've had a few instances where he has gotten very mad at me and yelled at me in public in front of people and loud enough for others to hear.

 

He has been approved for another month at least of outpatient therapy which I am very grateful for so I hope that I can still keep him somewhat wanting to go to therapy and hopefully he will want to start doing more at home.

 

Thanks again, I really value your thoughts on this....I just really don't know what to do sometimes.

[caringfor5]

Hi again,

 

Its so funny how things happen....here I am talking about possibly making a decision to just throw in the towel as far as therapy for Mike and today the therapists told us that they are looking at possible discharge or at least cutting down to fewer days during the week at the end of February.

 

The weird thing though, is that Mike seemed upset and it almost made me cry because you could tell he didn't want to stop going to therapy. I talked to him and so didn't the therapist about trying to do more at home and that therapy can continue at home and should be ongoing at home right now. I don't know if he understands what we mean though. Sometimes its like he doesn't understand the importance of therapy.

 

The therapists both say that Mike has the strength and range of motion to be much more independent but lacks motor planning to coordinate his muscles to do what he wants. Maybe its just so frustrating that he gives up.

 

Incidentally, he did very well in therapy today and very sweetly told me on the way home that he does it for me I love him very much but I want him to want more for himself, I guess I want him to push himself more, even though its hard and to do it for him.

 

Thanks Jean for the virtual hugs, I really needed them.

 

Tina

 

 

[Guest yin]

Tina,

As a survivor I can understand Mike's frustration with therapy. I also understand your frustration with the anger he displays towards you regarding you pushing him, ect... good old survivor anger is not fun to be on the recieving end is it? I can tell you from my perspective, I had enough anger for about 50 people but my PT kept telling me to use that anger towards getting better. It took a few years for me to fully understand what my PT meant. It also took a few years for me to be able to be self controlled to the point that I would push myself to strive towards new harder goals. It becomes difficult to even find the motivation or energy to take a shower or get dressed each day. To fight against the fatigue is both overwhelming and exhausting and to be in therapy still, well his reserves of energy must be running on empty. Maybe a break from therapy is what both of you need, to regroup and find a renewed sense in the fight of recovery. After all this time, therapy must be wearing thin and becoming a drag and maybe not enough improvements are showing to motivate Mike. But tell Mike that recovery never stops. I'm 5 years out and still having improvements and I still do my hand/arm excersises every morning.

I wish you both lots of luck and {{{{{{{{ {{HUGS}}}}}}}}} to you.

Yin

[2ndChance]

I'm a survivor and after a year of outpt therapy I quit. It was my decision and I'm glad I did. The therapists and my family wanted me to continue but after a year of 5 day a week therapy I still had exactly the same neuroresponse as the day I left the hospital. There was zero improvement! I felt it was a huge waste of money and time to keep going to PT/OT. I accepted my condition and changed my focus to living independently while my husband is at work. I have never regretted the decision.

 

Rene

[kristina38]

Therapy can be very tiring on survivors. Mom had several different bouts with it. We'd go for a couple months until she hit a "plateau" and wasn't improving enough for medicare to keep paying. We'd practice the stuff we learned in therapy for four or five months and when we saw improvement we'd call the doctor and sign up for more therapy. I found with Mom she did best if we limited it to a few months at a time then quit and let her process all that info. I think sometimes they forget the cognitive deficits that go along with the physical and try to cram too much info into someone which just creates exhaustion and confusion.

Kristina

[arogers]

Hi Tina,

 

Your first post described my husband very well. He will not do exercises at home, and that means his sessions at outpatient therapy weren't really very beneficial. I wish I could get him to exercise at home some, but when I suggest it he just looks at me. He's never been obstinate in anything else. I think it's because it is HARD WORK and he doesn't see an instant benefit.

 

I remind him almost daily that whatever he doesn't use he will lose. Now I'm feeling as though I'm almost using it as a "threat" - if he wants to stay in bed, then he will pay the consequences because I can't lift him or care for him in that way. He doesn't want skilled nursing because he wants the independence living at home gives him.

 

It's very difficult, indeed. The last time he had outpatient therapy the therapists could see he wasn't motivated to work at it and finally said they thought it was time to take a break. They've always been real encouraging about coming back at any time. I do feel therapists can set goals that demonstrate the patient isn't working, isn't meeting the goals and then the insurance company cuts the patient off. At times I showed some frustration in the goals they set then they adjusted them to show progress, thus extending the visits.

 

Bill CAN do more than he does. If I push him he will use his right hand, for instance - at this point it is "neglect" that is the issue. When I read about the determination of survivors here I sometimes get almost jealous that my husband doesn't show that determination. Then I see what he does do, remind myself just how disabled he really is and knock myself off my pitty pot. I can count on one hand the number of days he hasn't wanted to get up, shave, shower and dress in the last year. Even when he was in the skilled nursing facility his appearance was very important to him. That in itself is a blessing.

 

I do know how helpless you feel, and the mixed emotions you have. I just remind myself that everybody is different, and we don't even really know how much damage the stroke caused so I can't use somebody else's recovery to measure how Bill is doing. Each survivor is an individual and every journey is as different as one's personality I think.

 

Good luck to you! :friends: :friends: :friends:

[swilkinson]

Ray broke his pelvis and cracked his acetabulum (hip jont) on the left side, his stoke affected side, on 13th January. He is a case of "move it or lose it" as he has osteoporosis caused by inactivity on the left hand side. Of course he has had five strokes too so his deficits have built up with each stroke.

 

Like Bill he has lack of motivation and can see no point in exercising except when the therapist is right by his side. Encouragement can only do so much and although at times he has agreed to do some exercises with me or one of his sons his heart is not in it.

 

Ray has just been transferred to a Rehabilitation Unit where all therapies are on a daily basis and I hope against hope that he will respond to the treatment there and walk back into his home once more.

 

My experience of therapy as a whole has been good, but sadly a stubborn survivor who won't continue the exercises at home may have to consider what could result from that like osteoporosis,falls and further erosion of their freedom.

 

As for accepting what is happening I think that is a day-to-day thing. Sometimes I can accept what has happened to Ray and consequently to me and sometimes I struggle with that.

 

Sue.

[caringfor5]

Thank you so much for your replies, all of them, I have a lot of things to think about and I'm glad I have a chance to "talk" with so many people survivors and caregivers as well about how I feel and the decisions we need to make.

 

I do think that Mike is getting burned out on therapy and I can totally understand after a year of it that he would be. I'm just so scared that when outpatient therapy is over that he won't want to do much at home, but then I think that maybe he will be more motivated to do it at home when he's not having to leave to go to therapy 3 times a week. I just wish I could figure out how to motivate him again without aggravating him....when he was in the hospital I was the one that could get him to do more and the therapists were counting on me for that....now its the other way around. I guess he's just tired of me, I kind of feel like I have turned into a big nag, and I never had to be before so he probably feels like he's with a different person. I'm not who I used to be and that makes me sad on top of all the other things I feel sad about. I think I really do make him miserable, always being on him to do everything, but at the same time, I don't know how to back off.

 

On a good note, Mike's therapy went well today for OT.....PT was good but he got aggravated and kept saying he was tired. I think he does need a break, so at the end of February if they cut therapy down or stop it all together, I am going to look at it as a good thing and just try to motivate him to at least practice what we're already learning.

 

Thanks again,

Tina

[bstockman]

Maybe a break and practice at home.. You can probably to get the Dr to order more at a later time.

 

If you can incorporate some of the therapy exercises into daily things you do ... or have Mide help you with some things/chores around the house. like vacuuming if he is able or putting some of the canned groceries away. little daily things. that will help his cognitive and physical abilities.

 

Good Luck to you both.

[Guest lwisman]

Tina,

 

You might want to look at other options for therapy, which are not traditional therapy. I know they helped me. Also, other things which help to improve are different than regular therapy, and therefore helpful just because they are different. Also, many things are activities which people who did not have strokes participate in. It can be therapeutic to just do "regular" things.

 

For example: water aerobics (many Y's and organization like Y's offer classes for arthritis. These are inexpensive and very helpful), exercise equipment (I have a stationary bike which I find helpful. You might try a gym), tai chi (dvds, tapes or classes), yoga (dvds, tapes or classes), walking (if you live in a cold climate you might try walking at a mall, then move to outdoors when it is warmer. I find just being outside therapeutic).

 

As suggested above doing household chores can also be helpful. You also might want to figure out how he can participate in activities he enjoyed before the stroke. Mention some here and someone might be able to give you ideas.