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tinker

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I don't know what to do or what to expect. My husband is in a skilled nursing home. He stroked aug 2007 it was massive and he was not expected to pull thru. He did acute therapy and he didnt get much back. He is paralized on his right side and he has aphasia. He has refused any kind of therapy since December. He will not get out of bed and now he even is refusinfg to get to the shower room. I don't know what to do. He seems content to watch TV and eat what i bring to him. He seems happy and he looks good. everyone comments that if they did't know what happened to him he just looks like he is lay ing bed. What do I do? I go every day and bring his favorite foods watch some TV and go home. He is cognitive and understands alot. Watches the news and games shows and sports and follows them and knows what is going on. So what will happen to him? Will he develop something else and get sick because he never gets out of bed? Can someone stay in bed constantly and not get sick? Do I try to do things to motivate him? i have tried everythig I can think of. Everything people tell me to try. When i say things he doesnt weant to hear he turns his head and doesnt listen or gets mad and stressed. Is this it? He is on anti dpressants. He does not appear to be depressed. I fear he will develop pnemonia or kidney problems because he never gets out of bed. Or some kind of infection. Any ideas?

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What does the doctor and staff have to say about this? His attitude is not good and I would say not healthy. You can not motivate him alone. The staff are getting paid to work with him. If it were me, I'd be raising some cane at the facility. Be sure you're taking care of yourself too. (((hugs)))

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Hi Lonk Island Lady !!!!

 

I would think he would lose more of his muscle strength if he continues to lay there. When I went from the hospital to rehab, they had me out of bed after 2 weeks in intensive care. It did not matter, one on each side of me, they motivated and made me move. There are so many devices in PT where your weight can be suspended so you can work on regaining a semblence of awareness.

 

Now the other side......I would love TV because it is one dimensional...I did not get confused over the loss of my depth perception. It was a comfort zone. Also I had what I call the thousand year stare. I would just look without blinking at one object outside my tv zone and try to process it, but somehow my mind froze on it....

 

I would think not moving would give me bed sores and that is bad........I agree with Donna totally...Inquire !!!!!

Do they get him up and moving every day? Take him to another part of the hospital where there is more interaction?

 

The squeeky wheel gets the most grease. Act up, your a Queens Girl !!!!! Even in the regular world, people who inquire and make demands get the most attention...God Speed Gal

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This may sound harsh, but tough love may be in order. Talk to the doctors, see if you not coming up every night might snap him out of this. If he's as cognitive as you say, then tell him you're not coming up every day because he's not trying or wanting to help himself (make sure he understands), and then stick to the gameplan. This may work when he realizes you mean it and not show up.

When nothing works, it's time to try anything.

 

If you are going to do it please keep us in the loop, we care.

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Sharon,

When I read your post Stu's suggestion was my first thought, but being a girl like you, I didn't even have the heart to say it. It really is the way to go. Right now he has mommy bringing him his favorite treats, keeping him company to watch TV, and tucking him in at night, life's good.

I wasn't even tough enough to write the suggestion, so I don't know if I could do it, but you should at least give it some thought or cut the food.

Maria :friends:

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tinker, i agree with the above comments. it is not good to stay in bed all of the time. he can develop bed sores, muscle contratures, organs can start to shut down. the tough love is probably your best bet right now, after talking to the staff. he is waited on hand and foot, he has no need to want to get up. i think he is in denial. even spinal cord, paralyzed survivors get out of bed on a daily basis. getting him up to be bathed would make him feel better about himself. he has given up, it sounds like to me. you have a very stubborn husband, it appears. don't let him hear you talk to the staff either. they can make him get up with the doctors approval. he is just wasting away while he acts like this. it is a shame that he won't get up for you. i wish you good luck. i know you have tried to motivate him. the only thing that might get a rise out of him, is for you to quit visting him and bringing food. as hard as it might be.

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The reason your husband is in a Skilled Nursing Facility is because he needs care. I would be all over the facility if my husband was allowed to stay in bed all day and waited for me to bring him food to eat. You are definitely enabling his behavior. You need to speak with his physician and the director of nursing in order to develop a plan. If they are not interested in facilitating his progress then you should look for another facility. Maybe he needs a psychiatric work up and maybe he is manipulating you.

 

My husband is a master manipulator so I would dare say he is attempting to feel he has some control over a situation which in any other way he has none. I know how exhausting it is for you to go there everyday because I've been there. Please take care of yourself. You are still his caregiver even if he isn't at home - you just need to assume a different role.

 

Good luck to you,

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The doctors say some patients are like this they don"t want to do anything. They will NOT force hime to get up I have been told this repeatedly. He holds on to the bed rail with his good hand and refuses. I understand, because they say he has rights and besides he could get hurt if they force him or they could get hurt (the aids) . So if he insists on not getting up thats it. He wont even do speech therapy from his bed. He wont do acupucture. He appears to be cognitive but i dont know if he really gets it. I tell him he wont be able to go home. I tell him he will get sicker. He does not have bed sores. The facility is really taking care of him so I hesitate to move him. I was thinking about moving him and I wrote about it here and everyone said not to do it. The place would be further for me and a stressful drive in traffic and with gas at $4.00 a gallon and he might not get any better. I REALLY appreciate everyones answers and input. I think I am going to ask for bed therapy. Maybe someone could come in and work his arms and legs, If he will let them. Its the only thing I can think of. I have had phsical therapists and shrinks talk to him and no good. Maybe I can get a psycholgist to talk to him. I tell him if he woud learn to help himself out of bed i would get him a mortorized wchair. I have run out of ideas. It kills me to go everyday and see him eat and know he just lays there and watches tv. Like I said he looks great and healthy. He tries to talk all the time but nothing comes out and he gets fustrated and i tell him if he did speech therapy it could help. I brought books with the alphabet to try and work with him and we got to the letter " C" and hes had enough. I have heard to try tough love but i cant right now, my only joy is to see him. I'm thinking about it. It's hard. thanks to all of you from the bottom of my heart.

 

 

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Tinker,

 

I have a question. You say when your husband gets to "C" on the alphabet he has had enough. Does he appear tired? Yawn? Is he able to read and/or write? I'm asking because my husband's impairments are so severe that it is extremely exhausting - even today, three years later - when we work on reading or memory skills he has an extremely low capacity. Sometimes when we are in the car I ask him to list various things and he can still only list two or three very common items such as animals or colors. He is most comfortable watching TV too. He doesn't really follow it well, though and can't interpret much.

 

Believe me, I do understand the difficult time you have with tough love because I have the same problem. I think back and think that if I had been more firm with him early on he may have worked harder - but there is the reality of capacity.

 

I know the patient rights thing is difficult to get around, but there should the professionals should have some knowledge about how to cajole him into cooperating. It's frustrating for you, I'm sure. It seems like a start would be for him to sit up while they change his bed. Or, when you bring food what about telling him he will have to sit in the chair to eat? Since he enjoys your food you might try to use it as a tool for getting him up and about. I have to admit, I have done that with Bill - we will do this after you have done that...

 

Every stroke is different and every reovery is as well. It is difficult for me sometimes when I hear about all of the survivors who have awesome recoveries and I make comparisons. We can't do that though. We don't know what part of the brain was damaged and how severely. All we can do is ty to help our survivor gain as much independence as will be possible. I do think a psychological evaluation by a neurological psychologist would be in order if you husband hasn't had one yet. It helped me understand what goes on with Bill a little better.

 

Good luck,

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dear Ann,

Thank you for your reply. He doesn't appear tired it seems like its too much for him to concentrate on so he pushes it away and turns to the tv. I don't want to stress him so i stop. I'm so glad i still have him, but of course i want to help him get back more and be independent. I'm not sure he wants that. It's hard to tell what he's thinking. But sometime I think he does not want to be in a wchair and so he won't try anything. If i did the food thing you suggested he would just turn away and ignore me and give up eating what i bring. Did I mention he's stubborn. But I will try. The doctors say some patients are like this. There are some aids that try to conjole him but he appeases them with i'll get up tomarrow and of course he doesn't. He does it to me also. Tells me he will get in his wheelchair tomarrow and tomarrow comes and he refuses. i will work on tough love but i'm weak. thank you so much.

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if you use food to encourage him to try, make sure it smells really yummy and set it up where he can see the food and chair and invite him to come and eat

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Dear Tinker,

 

OK, friend, the time is now for you to toughen up. You can either have regrets being too hard on him and he didn't like it or regrets that you weren't strong and he has remained in the bed and never had any life after his stroke. Either way, I can tell you are going to beat yourself up over him - and really, he is exerting his control over you. I think he is exerting his independence in any way he can. He's being very successful, too. Promise...break promise....no consequences. Has he always been this way? Think back. You say you are too weak. Have you always been?

 

Let me just say, unless you become a teacher and cheerleader for your husband now you won't ever be able to bring him home. Now, maybe deep within your heart and head you have so much fear about being his caregiver that you don't feel you are able to do that anyway. Maybe he will need to remain in a nursing facility, however, after 100 days his stay will be self-pay because there is no physical reason for him to be there. It doesn't matter whether you feel you can take care of him or not, that's the way it is. I don't know anything about your financial situation, but I think you should begin now exploring how his stay will be paid for. If you have long-term care insurance you are fortunate.

 

You just don't have the luxury of not being strong enough to require him to begin the program of recovery. He isn't the first one to have severe disabilities after stroke hits, and he won't be the last. I just know, there will come a time when you are fed up, burned out and unwilling to allow his stubbornness to rule the roost any longer. It's just a matter of time. I feel sorry for my husband, but I am not physically strong enough to manage all the care required if he were to be bedridden. How about you?

 

My husband IS very much like yours. That's the reason I'm saying the things I am. I'm talking to you from my own experience, and I wouldn't wish it on anyone. It's so hard to know what they can't do and what they don't want to do. Not all stroke survivors do have the drive that many here have shown. We don't know exactly what is damaged in stroke survivors or why some do better at recovery than others. It has been much easier from Bill to say "I can't" and not want to try. Fortunately we have had some therapists who have just not allowed him to automatically say "I can't". When he says something is boring I just say when he's mastered the boring things we will be able to move on.

 

So, go for it - let him know you have some expectations of him. One of those expectations is that when he tells you he will do something he will do it. It won't be easy and you know that - but it is very, very important.

 

Good luck!

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Sharon, I am going to play Devil's advocate here. I am going to use the opposite argument to Ann.

 

What if he just lays on his bed for the duration of his life? Will that life still be worthwhile? Will the time you spend together still satisfy your own needs? Or will you build up resentments as Ann has said?

 

I have tried to put myself in your place and I know it would break my heart if Ray had done this. BUT I guess I would have got used to it after a while and settled for the few hours we spent together each week. The calling in each night after work, the hour or two each Saturday and Sunday. I wonder how long I would have kept up that routine for? I don't think our marriage would have lasted though as my good intentions would have waned after a while.

 

How will you cope if you have to eventually pay for his care? Will you still be able to manage a good life on the money you have left at your disposal? How long will you continue to visit every day? How will you manage the chores at home in the long term? Will you go away on vacations alone?

 

I can't see this lasting, I can see you growing sadder and more disillusioned, and maybe a bit bored with the whole deal. The advantage of having Ray come home each time he has been hospitalised is that we are in an environment where we are able to share..meals, watching tv, visits from friends, family occassions. I can't imagine how we would have coped for the last nine years if we hadn't had these shared events and the memories. On the other hand I have visited Mum in her Dementia Lodge twice a week for the past six years, but then I go on vacation knowing she will not remember when I was there last because of her Alzheimers.

 

Will staying in bed make him sick in the long run? I should think maybe so because of congestion and slowed blood flow and other issues. But then there have always been long term invalids I guess so maybe not with proper care.

 

How does his family feel about this? Do they see a future in which he stays in bed, in this particular place, as being what they want for him? It would seem to be a lot less than I would want for myself but then I am not there.

 

Tough love, cajoling, crying, begging the aides for help etc has worked for me each time. The tears of my frustration sometimes moved Ray when nothing else would. He loves his home and his plan was always to get home as fast as he could do it. Bless him.

 

I am so sorry this is happening to you. It is a lesson to us all as caregivers that there may be point in the struggle of returning from the next stroke or critical event when our survivor says : "NO, not this time, I have had enough."

 

I missed you in chat today.

 

((Hugs))) from Sue.

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To Ann and Tinker,

 

i feel for you. my ex husband-who i care for is 34 years old and he is acting just like your spouses. it saddens me to see him "unfazed" or unemotional when i try to motivate him. as mean as this sounds, the tough love approach has worked best for me. when he doesnt want to clean up or brush his teeth i'll ask him "fine. you want to sit here all day and stink so noe one will want to come around"(said with humor-we have that kind of relationship). and he states "yes!!!". my immediate response is "well too bad. im not gonna let you. this was a daily routine for you before and its going to continue to be." he knows we wont let him wallow in self-pity and let him know he needs all the therapy to get better so he can go home. we also remind him that all the therapists truly do care how he improves.

 

i know your rustration. i go through it every single day--the refusals, my rebuttals, his irritations, and the motivational pep talks i give before therapy.

what bothers me is---i think he doesnt want to do all this only because he feels " bothered " by all of it. not because he doesnt want to rehab. at least i think. his memory is poor and i feel like the main character in Groundog Day"-where every day is repititous.

 

 

im very interested to hear from both of you to hear of progress-

 

good luck...............................kelly

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