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Help! I'm sticking my foot in my mouth!




[/size][/color][/b](Sorry for length) I am doing this as a blog because I really didn't know where to put it. It is for caregivers and I know many come here.


First let me say that I have the utmost respect for you and realize that you do what you do because of your love for your survivor. Lately, though, I have had a problem and I need some imput from those who would know.


There is a couple that comes to stroke support. The husband is a very sweet man and has aphasia BUT, he is one who is fortunate in that he has no physical disability. His caregiver, of course, is his wife. They moved her a little over a year ago and really haven't made close friends with people as they would have had they remained where they were. I'm not sure why they came to this area from South Florida but they did.


The gentleman desires some male friends that he could go to the gym with. It's not a case of going to the gym and meeting someone because he "can't" speak. Actually, I believe that he can and would speak more if it weren't for his wife. There, I said it. One time after they had come to support a few times he actually said a few words and I was shocked - it was the first time. Anyway, back to where I was. His wife speaks constantly and machine gun fast. He really can't say anything because her mouth is always going, always speaking for him. (Yes, I understand that if he can't speak), she probably feels she must.) The thing is, the few times I have been in the group with her and when she called me to discuss something, I wanted to tell her to shut up! She really got on my nerves and I am only in her presence an hour or 2 at a time. OK, perhaps she doesn't realize she is doing it. They have been married a zillion years and I guess he understands.


We are going to have weekly get-togethers and she has taken over and "started arrangements" after discussing it in general. That's fine. I had copied the things that the successful Orlando Stroke support group had when Florida was listed as members meeting members. There is no way that the 2 groups would be in competition because of distance; but we should be picking up as an east coast group for people in this area. I had given the information to the ST who is in charge of the group (but that's another story) She glanced at it and handed it back to me, so because she was sitting next to me and was all gungho, I gave it to the wife. She was glad to get it and did call me about it.r

Her basic idea is good - we should meet weekly when out group doesn't meet - and when it does, every week but that one at the library which will give us a room to use. That way, no one would not be able to come because of cost. Personally, there are places we could go to as a group once a month that wouldn't be much. Im fact, a new woman, who has aphasia but apparently has a simpler case, had said she and her husband go to Taco Bell every week and if anyone wanted to join them that would be great. It was her idea since eating and meeting had not been mentioned. I jokingly said I would not go to Taco Bell because they fired the chihuahua that was in their ads - which were great. (Actually, I did stop going but didn't go often because I don't like spicy foods.)


Anyway, I am finally getting to my point. How could I possibly get this man to speak and take part without telling her to keep quiet. I don't know if he goes to any therapy and he seems to be at the mercy of the constant nagging. What can I say, as a member of the group that would involve him to the point of joining in the "conversation" without his wife answering for him. Unfortunately, the other men have physical problems and would not be able to go to the gym. The one man who would have been great is the man who had the brain tumor and they have moved to be near a son. There is a new man, who doesn't have aphasia who would understand, but the problem with him is he had surgery for heart problems and the gym he goes to is the cardiac gym. Any ideas of how to untie this man from his wife's apron strings - and give me some peace and quiet also? :uhm: [/font]



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Phyllis, find an excuse for the caregivers and the survivors to have a separate session. Maybe ask the caregivers to work on some "problems" together. In case the lady who talks too much doesn't want to join them say it is her "imput" that is needed. I have struck this problem in other groups.


One thing about groups is that they evolve a life of their own, for better or worse. See if you can have a private word with the ST and tell her some of what you have discussed here particularly the fear you have that he could speak if he could get a word in sideways.


Good luck with implementing some of the great ideas you have for the group.



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I'm going to stick my neck out here and make a few comments. You said in your post


"The thing is, the few times I have been in the group with her and when she called me to discuss something, I wanted to tell her to shut up! She really got on my nerves and I am only in her presence an hour or 2 at a time. OK, perhaps she doesn't realize she is doing it. They have been married a zillion years and I guess he understands. "



I think the key word here is "FEW" times and I'm wondering if you're making an assumption that she always speaks for her husband, even during the many hours that you're not with them. Is it possible that she works daily with him trying to help him with speech, and when they get out in a public setting, he allows her to speak for him rather than being embarrassed or frustrated when he can't get the words out properly or others can't understand him.


As a caregiver to my husband who also has speech difficulty, I find that when he tries to speak to others, they end up turning to me to ask what he said. I'm with him 24 hrs./day and they see him maybe an hour or two once a month. It is understandable that they have difficulty interpreting his speech, and when that happens he gets very upset and ends up crying. He has gotten to the point that he won't answer people now when they ask him questions, he points to me instead to be his voice. So, I guess I would appear as the caregiver who does all the talking and won't give my husband a chance. As caregivers, we find ourselves in the position of being damned if we do and damned if we don't. If I told my husband to answer someone's question since I know he can, then I would appear as bossy and cruel (believe me, I've been judged more times than I care to think about).


I think that making polite suggestions to get the husband aside and talk one on one with him would be nice and she would probably appreciate the break. I would be on cloud #9 if all the people who thought I wasn't doing things the right way, would take turns taking my husband away for the day and working with him one on one. Wouldn't that be a nice break for the caregiver?


I'm just giving you a look from the other side. Every stroke is different and every recovery is different and no two people react the same to stroke or caregiving.





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Thank you for the responses. Let's see if I can clarify this a bit.


First, Betty Jean an ST is a speech therapist. Some are called Speech Pathologist. I do not know if the terms are exchangeable or a pathologist has more training. I do know that a Master's degree is required to work in rehabs - at least the one I was in.


Secondly, I did think about somehoe serarating them but can't right now think of a way. Speaking to the ST who is now part of our group doesn't seem to be the answer. We had a different person last year and were told they were going to take turns this year - for some reason, that didn't happen - perhaps schedule change for them. They divided the group into asphasia and "others" but because they are ST, and work more with those with aphasia, that group gets some people but for some reason, they do not attract the "others" and those that have come do not come back...........


Sarah, perhaps saying a "few times" was wrong. I don't think the situation is as you suggested. Maybe so, but I really don't think so. To begin with, to me the place where aphasiacs (word?) would be most comfortable with those who have the same problem as they have, then with other stroke (different types) survivors because we understand more than the general public who can be very misunderstanding because they know nothing about aphasia - unfortunately.tt is steps. Just from the way she is, and how they haven't seemed to meet people who have learned to understand the situation makes me feel it is a completely different thing. Perhaps I'm too much into the computer but she dtill hasn't set up their computer - in 2 years??????? I also can't understand why she hasn't put more effort into getting him some help. I honestly don't know if he takes any ST now or how much he has gotten. I do know that he goes to a VA hospital a short drive from this area (further than someone would go to weekly) He must be old enough for Medicare and they own their home so I don't think finances enter into it.


Anyway, it will be interesting.

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Dear Phyllis--I think the suggestion of separating the caregivers and survivors is a good one. Also, perhaps you can take the ST (what does that stand for?) aside and ask that s/he coach anyone in the group who answers for someone else to allow the person to speak for themselves. This might help the problem and give the gentleman a chance to speak he might not otherwise have -- but we don't know that. We don't know what happens behind closed doors. You can only define and work on the challenge you face in support group.


If everyone is allowed to speak for themselves, the others in the group must give the respect due and allow the person to speak no matter how long it may take. Take Care. LK

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Hi Phyllis,


I would suggest that when you speak to the gentleman you preface you question (as I think that is a way to get his input) with his name - and look at him. If she speaks up, then repeat your question to him....You may also want to work out some ground rules for conversations that point out the need for the person with aphasia to speak for themselves when possible.


From the caregiver's perspective I have become increasingly frustrated with the MEDICAL community addressing me in front of Bill asking about him.......When that happens I look at Bill and say, what do you think honey? If he doesn't know or can't remember he says so. He has commented at times that he feels invisible - and I can understand why.


Yes, at times he has difficulty getting the words out - I can tell when he wants some help because he looks at me. I do want him to speak when and as much as he can though because if he doesn't use it I fear he will lose the ability he has.


The big thing to remember is that no one really has any control over another person. I know how frustrating it is to sit and listen to her go on and on for her husband. As has been said we really don't know what goes on behind closed doors and even though her husband may seem to be able to talk just fine, there may be problems that aren't visible during short remarks.


I do agree it is important to separate your group between caregivers and survivors for some time at each meeting. Even for 15 minutes, which could stretch into 30 minutes or more once the schedule becomes routine. You may want to get together with the ST to arrange a method for providing this "alone" time - and just be very honest and upfront that both the survivors and the caregivers need to take a few minutes each gathering to interact on different levels. Ask the lady to moderate the group!!!


I know it seems like a difficult problem, which it is - but there are ways around every problem I think. Are there many other caretakers there?

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