lschick Posted February 2, 2006 Share Posted February 2, 2006 My husband suffered two massive strokes in Oct., 05. He has been through a lot, to say the least. Steve was in the hospital for three months. Steve suffers right side paralysis and aphasia. He recently came home. I have been Steve's only caregiver since he came home. Actually, I was his primary caregiver in the hospital, too, other than the medical stuff. I feel I'm doing a very good job in caring for him. I try to remain cheerful and upbeat. I have to admit, this has taken quite a toll on me. We have three children living at home. I had to quit my more than full time job to care for Steve. Our home life is obviously a little hectic, and always has been. Here's the issue. Today, the rehab hospital called to check to see how Steve has been doing since his release from the hospital. Steve wanted to know who had called, I said it was the rehab hospital, checking on how he's doing. He said, "why?" I jokingly said, "they are making sure I'm not abusing you". He said, "well, yeah!" I said, "you're joking, right??" His response was, "no, no". I said, "do you think I'm abusing you????!!!!" He said, "well yeah!!!". He was dead serious..... I was floored! At the time, we were in the bathroom. I had to transfer him from the toilet to his wheelchair, then we were to head out for outpatient therapy. I just couldn't hold back the tears...I have not cryed at all since the stroke (well, other than "happy crying"). I told Steve I didn't think I could take him to therapy. He said, "why?" I told him he had made me cry. He didn't even care..... Well, I took a moment to pull myself together and took him to therapy. He was "off" in therapy, just not paying attention. I need to know if I should bring this up, or let it pass. I certainly do not abuse my husband. He is getting tender loving care. Our children are wonderful in making sure his needs are met, too. This despite the fact the two youngest are 9 and 13! I have always shared my feelings with my husband. It's killing me to not bring this up, but his communication is so very difficult. He tries to say a lot of things, then ends up giving up because he just can't get the words out. He does understand everything, just can't form words. So...do I let this go? I really need to know what he thinks I may be doing wrong...but, I can't bear to cry in front of him. I don't want him to see me fall apart. :head_hurts: Help??? Thanks, Lyn Link to comment Share on other sites More sharing options...
jriva Posted February 2, 2006 Share Posted February 2, 2006 Lyn, My husband's aphasic vocabulary is very limited and he often says exactly the opposite of what he actually means to say and he really doesn't know he is doing it. (They do a lot of therapies in speech designed to get him to listen to the words that come out of his own mouth.) Are you sure this is not what happened today with your husband? Could he have been saying the words but thinking that he was saying or agreeing to something entirely different? What you thought was him not caring about you crying could have just been confusion, him not understanding what he could have done to upset him. Maybe he was having a day where his listening skills were not engaged. If you bring this up again with him, I would be very careful how you frame your questions. Make them simple and not so broad based. Instead of asking "do I abuse you?" I would ask specific things (examples of abusive stuff) that require yes or no answers. But if you know in your heart that he is getting loving care, then you might have to chalk this incident up to an aphasia/stroke thing and push past it as much as it hurts..... :friends: Jean Link to comment Share on other sites More sharing options...
spokangie Posted February 2, 2006 Share Posted February 2, 2006 Hi I echo Jean's suggestions.. My husband also has aphasia and for the longest time would say yes to no and no to yes..It took him a couple of treis to realy say that he meant yes..Even now after almost 3years he still confuses yes with no sometimes, he realy has to concentrate makings sure it is the right answer.. October 05 is realy not a very long time for him to decipher.. My husband knows exactly what he wants to say but the exact opposite will come out of his mouth, then he shakes his head letting me know it is wrong..I just tell him to slow down and pace himself it will come to him.. Trust me it drove me to crying fits, exaustion, frustration and beleive it or noth hysterical laughter, sometimes all at once :yukyukyuk: He would burst out laughing with me. But one wrong word comes out of me and it will bring him to tears..He also gets frustrated with himself too when he can't say what he is thinking..He used to bang his fist on the chair, thankfully that period is over.. I have found that you realy have to be carefull how you express yourself too..It is hard to try and guess what they are trying to tell you, sometimes you get it and other times you end up being just as frustrated as they. Patience is the thing, sure I know it is easy to say, but very difficult to master. I am still working on mine.. Sometimes I go to another room and scream silently to get my frustration out..it helps, then I go and give him a big hug and a kiss.. :wub2: Never question yourself, just remember there are others out there that don't have the loving caregiver care for them and would give anything for one.. As time goes by things will improve, you learn his body language and maybe with ST his vocabulary will increase.. Take care Angie Link to comment Share on other sites More sharing options...
lschick Posted February 2, 2006 Author Share Posted February 2, 2006 Jean and Angie, Thanks so much for your replies. Yes, this is all so new to us! I did break down and ask Steve, tonight, about him saying I abuse him. Turns out he thought he was being funny...When I asked him tonight, I had just helped him shower and get ready for bed. I was applying a prescription cream to his face and he said, "See? I hate this!" (meaning the cream on his face) I guess I had better toughen up a bit, huh? LOL The communication is definitely the worst part of the aftermath of the stroke. He tries so hard to talk...And then sometimes, the words just stream from his mouth. Not a lot, but 3-5 word sentences. And they make perfect sense. We are both surprised when this happens and he always asks "why?" when the words pour out. We really haven't had a lot of issues with the yes/no stuff, only occasionally will he say the wrong thing. He really seems to know exactly whats going on, but sometimes I wonder if he is really that clear headed. Maybe he's just a good actor. So, I'll just chalk this up as a misunderstanding. I know Steve really does love me, and for the most part seems grateful that I'm here for him. I guess I'm just touchy lately. Hope I get over it! Thanks again, Lyn Link to comment Share on other sites More sharing options...
jriva Posted February 2, 2006 Share Posted February 2, 2006 Lyn, Like Angie said, you haven't been dealing with aphasia very long in stroke time so don't be so hard on yourself. It does get easier the farther out you get---Don and I are 5 1/2 years out---but communication issues really are stressful for everyone, especially in the first year post stroke. Hang in there! :friends: Jean Link to comment Share on other sites More sharing options...
kkholt Posted February 4, 2006 Share Posted February 4, 2006 Hi Lyn, My husband didn't lose much communication ability - however it did take him a while to get back in check with our relationship on an emotional level. Prior to his stroke, as with most relationships, he was concerned with my feelings. I noticed it took probably three months for this to come back to being close to pre-stroke. Don't lose hope in regards to your husbands response to your telling him your feelings were hurt. You are both doing a lot of healing now. -Karen Link to comment Share on other sites More sharing options...
Keepongoing Posted February 5, 2006 Share Posted February 5, 2006 Hi Lyn, My husband is 2.5 years post stroke, and has aphasia. He can on some days talk great and on others he still can go on a stream of mumbling for a couple of sentences before he realizes it. We are past the no & yes stage but, the emotional level is still not there. I don't know if that will ever come back. Lynn Link to comment Share on other sites More sharing options...
bstockman Posted February 5, 2006 Share Posted February 5, 2006 From a survivor, the emotional level is hard on both. Sometimes it takes all your focus on what you are tryig to do...feel guilty at first that we cannot do for ourselves.. being dependent on someone else for care takes awhile to adjust to. The anger or frustration that comes out is not directed to the one trying to help us, it is at ourselves... Sometimes when trying to say something it is in your head exactly what you want to say but when it gets to your tongue... it doesn't come out right at all. I am very lucky I have regained most of my physical abilities, there are some things I cannot do, or I tire easily.. the first year is definately the most difficult. Best wishes to you both Bonnie Link to comment Share on other sites More sharing options...
merichsen Posted March 3, 2006 Share Posted March 3, 2006 lyn, a stroke effects so many aspects of who we are including our sense of humor and pragmatics. if he had said the same prestroke, you most likely would have known he was kidding. he may not have reacted to your crying because he may feel responsible for all the extra stress and work that this has caused for you. i know i do with my family. he may have likely just not known how to handle it and feared that addressing it might just make it worse. i'm sure he does not believe you are abusive. i know i have a hard time trying to express my gratitude for the caregiving i receive because thank you just doesn't seem like enough. i know not only has this stroke changed my life, but my entire family's lives dramatically as well, and it bothers me because i know they had no control over this change and must adapt and conform not by choice, but by necessity. he may feel some of the same and is not quite sure how to deal with those feelings, and may be frustrated and upset because he realizes there is not much he can do to fix it. i also feel that because i'm not as feisty as i used to be and am now more passive that my kids take advantage of that and that sometimes my family might try to boss me around a bit knowing that i'll no longer fight back. i don't know if this helped at all, but i thought i'd share some of my feelings to maybe shed some light on what may be going on in his head. good luck &prayers, maria Link to comment Share on other sites More sharing options...
lschick Posted March 3, 2006 Author Share Posted March 3, 2006 Hi Maria, Thanks for a survivor's point of view. I realize now, he was either joking or confused. He has since let me know how much he appreciates the fact that I'm here for him. My husband was always very agressive, and also "the fixer" in our family. I know this is hell for him, and I know he feels like this (the stroke) is all his fault. Our family is trying our best to help Steve realize we are so very grateful to just have him in our lives. Yes, we have struggles. On the other hand, life would be much worse without him. "Life is not supposed to be easy", is my motto. I truly believe we are here on earth to learn "life lessons". This one is a very hard subject! But, we'll get through it. This is just one of the many bumpy stretches in our life's path. Oh, and Maria~ try not to be so hard on yourself! I've read some of your other posts, and it sounds like you have wonderful children. They'll get through this, too! Take care, Lyn Link to comment Share on other sites More sharing options...
bames49 Posted March 3, 2006 Share Posted March 3, 2006 Lyn... as frustrating as this experience has been for you, there are (at least) two good things. one) you have learned something about aphasia that can help in the future two) and really important as far as I can see -- I think it is TERRIFIC that your husband WANTED to joke with you about this... or anything. Too many times the "stroke" becomes the only thing you are sharing (because of the time it takes to do so many things) or because many times our attempts at sharing are really more "one way": "tell me what I can do for you" -- "I want you to know how much I care about you" -- " I want to tell you something funny". His joking was an attempt at real sharing... "NORMAL" stuff. I know how frustrating this probably was for him and how hurtful it was for you... but i think it bodes VERY well for your future together !! Barbara (just call me Pollyanna... but gosh I luv those silver linings !!) Link to comment Share on other sites More sharing options...
ccmpjm Posted April 9, 2006 Share Posted April 9, 2006 Lyn my husband suffered a stroke in sept 2005 and i fell the same as you do i am his caregiver 24/7 the change in our life has been devastating he was also affected on the right side and and is unable to speak no no no is all i hear i tink he understands but shows no compassion or passion very lonly for me no one understands it seems oh well clo........... Link to comment Share on other sites More sharing options...
fking Posted April 9, 2006 Share Posted April 9, 2006 ccmpjm, welcome to the site, glad to see you participate in the Forums. I know that 24/7 feeling for caregiving from a hospital bed downstairs cause I had no ability to climb stairs or even turn myself over. Those were tough days. It does affect the family structure for compassion. As a survivor you feel so all alone. Link to comment Share on other sites More sharing options...
PureStirling Posted May 30, 2006 Share Posted May 30, 2006 Hi Lyn , Men don't make good patients, I believe the stroke is talking not your husband . I remember my dad had a stroke he wouldn't even accept presents from my mother I am now a stroke survivor Men seem to say mean and hurtful things to their most precious items in life. Iam here to E- cry on Link to comment Share on other sites More sharing options...
lschick Posted May 30, 2006 Author Share Posted May 30, 2006 Hello there! Your post made me crack up laughing~ Steve has always been a "bad" patient, and I agree, he fits in that category of hurting those you love the most. He always has... I have to say, things have improved regarding him understanding what I'm saying and what his responses should be. We still have days when he is mad at me, but he understands everything I do is for his own good! Have a great day! Lyn Link to comment Share on other sites More sharing options...
chrisratty Posted June 17, 2006 Share Posted June 17, 2006 I've just read this topic & many things voiced here echo the feelings I've had since my hubby's stroke 7mths ago. Fortunatly his stroke affected his left side hence his speach is fine, plus his zanny sense of humour has stayed with him thoughout & on the whole things have been good between us even though he isn't home with me yet, we're waiting for adaptations to our bungalow. Whilst he has kept even tempered I've found out that if I question anything he's said especially when he's been in one of his confused periods when he's said he could walk/drive had been home etc...he's been quite angry & sworn at me...that is not him at all. I've learnt to ignore those times & things are ok then. He is improving daily now since he's walked a few steps & the confusion seems to be lessening. I have noticed though that he is'nt as thoughtful of my feelings as he was, never seems to realise it's been very tough on me as well...& that can be difficult as he is a very caring person, at the moment I'm doing all the giving. Well I feel better I've written this down, especially since I now know I'm not the only one going though aall this emotional truama. chris xx Link to comment Share on other sites More sharing options...
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