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Ethyl17

Emotional withdrawal?

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We were talking in Chat last night, from a Caregiver's point of view mind you, of the emotional changes in our relationships, post-stroke.

 

I know Bruce is still in there. I know I am very important to him. But the emotional drains, day to day, are overwhelming. He never asks how my day is when I get home from work, will not wait until I have a plate to have a meal with him, if I ask for a sleep late morning, he still awakens me to tell me his paper is there. As far as I can tell, I am here to care for him. He willingly does anything I ask, as long as I am here. With the caregivers in, it is always a no. We put our heads together, trying to figure out ways they can also help me-like the jeans, instead of house pants.

 

This has become very painful for me. All I want to do is hold and comfort him, but there is no reciprocity. I was always number one and it has become too difficult, emotionally, to keep the status quo.

 

I go through the day, sticking with his routine-he really functions best here-insisting on those things that only help him medically: he won't walk, but still insist the AFO is put on, foot drop; walking shoes on pool days, jeans. He must help with breakfast and dinner on my nights home, dishes, laundry. Past two weeks we are working on more independence in showering and dressing, since he will only do that with me, more independent transfers and standing to get into cupboards. Leo insists he walk to the bed: not far, couple of steps but walking none the less.

 

I am trying to remove myself emotionally from this. There is no longer a relationship or "team". He does not want to have coffee with me on the deck, a chat after work and his day with the caregivers, work on a crossword puzzle together. He smiles and is always in a good mood, receptive to my suggestions. But is this what we have become?

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hi ethyli agree wit that statement we go through alot of how we react to a situation and how we m,ay even think that you feel about one another in your m,ind you may think that every thing is going well then you just merrily go on your way not realizing that there is a partner that we have to think of i do try to make every one happy and i am always thinking that i am but the only one who really can answer any of how i am doing in my relationship only my wife can answer that i am sure that your gusband is in love with you and whants to be as e,otional with you all the time but he is probably feeling like a guy if i am feeling oky i must be oky then it is just a male thing i am sure that once he starts to recover that he will know that what you expect of him or he may feel like you do so munch for him as a caregiver/wife can dofor him that he probably doesn"t even see it if i were you i would have a talk with him to tell him what you feel and what you expect of him , i hope that you know what i mean all the best to you and i hope that he will see the light and start tomake you feel as love as i am sure that he does just doesn"t know what you want

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Debbie, just had a google around and it seems in traumatic brain injury, which a stroke is, it is known as "flat affect" or "blunted affect" and is part of frontal lobe damage.The general consensus seems to be that you need to see a neuropsychologist for cognitive rehabilitation. Wow, that sounds expensive. Still if you do know of one it might not hurt to ask what is available.

 

From personal experience Ray can no longer show emotions, doesn't say thank you or I love you , use terms of endearment or appreciation with the exception of saying thank you to the nurses, aides etc that come here. I've just learned to live with the fact that it is as much a part of his stroke deficits as is his slow walking or inability to use his left hand.

 

When I get upset about this, as I do from time to time I ask myself why I feel I need his affirmation. It's partly conditioning I guess that there will be emotional responses when we do certain things and in a way I expect that a partner will show his love by such responses. But I do feel that Ray is not withdrawing his affection, he simply cannot feel any emotion deeply or express what he is feeling now.

 

What has shown me a different way of looking at this is my journey with Mum into dementia, her slow loss of emotional responses, her lack now of any ability to express emotions apart from the crumpled face and a sort of false crying sound similar to those made by small children.

 

I realise that with Ray the inability seems inconsistent as he can still express anger, frustration etc but not the warmer emotions like love and appreciation. I guess that is part of self-defence and self-preservation in that we express anger etc more easily than we express affection.

 

I think this is more a question for a psychiatrist or a neuropsychologist rather than a social worker but if you know one of those you could run the question past them too.

 

Sue.

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Debbie, pay attention to your reactions, embrace your gut feelings, they are

 

clues to the truth, trust them.

 

WHEN A CAREGIVER DECLARES THERE IS A NEGATIVE CHANGE, it is no small thing.

 

Most caregivers notice details and changes.

 

Why? Because they are desperately hopeful for good news.

 

When they see nothing but bad news,

 

they feel BAD, REALLY BAD.

 

Let your bad feelings guide you to accept

 

THE TRUTH OF THE SITUATION.

 

Only you can know what that is,

 

you are there, you see, you sense, you experience

 

what the truth is.

 

The truth is your friend.

 

AND SO AM I. And so are others here.

 

You are not alone, Debbie.

 

RACHEL

 

 

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I see some of the same things in Larry. He never cries. I cried about a news item on TV showing tornado victims who had lost everything. He said "what's wrong"? I thought he doesn't see the sadness. Like Bruce, Larry doesn't wait for me to sit down to eat. I fix his lunch, and by the time I sit with him, he is finished. I too want him to sit with me on the patio when the weather is nice but he won't. Larry will only do things when he sees how upset I get when he doesn't do them. He will tell me thank you and say "you take good care of me". However, when I run across a piece of medical news on strokes he is not interested in reading it. He will not go on the computer to even send his friends an E-Mail. I enjoy going to the rehab center with him because people there are so supportive and talkative and in the same situation. I wonder if going to one of the psycologist in the rehab center would help. Have you considered doing something like this Debbie? I might discuss this with his doctor when he goes for his Botox next week.

 

Julie

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I really can't speak to the caregiver side of this, because I'm a survivor, not a caregiver. But I can give some potential insight into what is happening inside of the survivor.

 

Pre-stroke, I was a very emotionally present person. I wore my emotions not only all over my face, but all over all of me. I was the "touchy-feely" type, cried at sad movies, laughed at the smallest of jokes, got excited at little things and gotupset just as easily.

 

Post-stroke I am a very different Lydi.

 

I love my Sam, Laney, Garion and Logan more than I love any other human beings on the face of the planet. I lived for them and I continue to try work at recovery goals for them more than for myself. They are the light of the word to me.

 

But showing them that, even telling them that is sometimes just more energy consuming than I can handle.

 

Sometimes I really belileve that I did tell them I love them, did all of the things I used to, before the stroke, to show them how important they are and in my head, I can picture what I have done/said. But it never left my head. Somewhere, along the way, something got missed and the expression never came out.

 

The actual feeling of accepting physical affection, even something as simple as a handshake is some times completely overwhelming and it is frightening to have to deal with it for me. I shy away from hugs where I used to be the first to offer them, and wouldrather that people I don't know well not touch me at all.

 

Sometimes, I recognize that I know a person, but I cannot remember in what context or even what their name is. They are literally only 1 small step away from being a stranger to me, though I may have been an aquainted with them for years. I have a problem with face recognition when it comes to people I don't see often. I know I should know something about the person, and I am racking my brain to try to place them so hard that it makes something as simple as human touch almost painful.

 

Sometimes I can't put the feeling behind the words I say either. Trying to tell Sam I love him comes out very flat in a lot of instances, becaue at that moment, I'm not 100 % positive that I'm using the right word.

 

These are just some of the challenges a survivor can face, trying to interact with the world around them. We aren't trying to be withdrawn. We don't care any less or love and appreciate the people in our lives any less than we did before the stroke. In fact, a lot of the time, we are even more appreciative of the loved ones who step in and become caregivers and advocates for us. And that is part of the problem. That emotion overwhelms us so that we have a hard time dealing with it, let alone expressing it.

 

I know, a lot of survivors will tell you that we now cry at the drop of a hat. We do. And that makes it harder for us to cry at the really big emotional moments in life. The emotion is so strong that it robs us of the ability to process it and experss it.

 

I can cry because I burned hte pancakes making breakfast for Sam, but I couldn't sry when my uncle died. The bigger the emotional situation, the harder it is to express.

 

I hope this helps some, to understand that we didn't become totall wrapped up only with ourselves when we stroked. We love and appreciate those closest to us even more than before the stroke. We just get lost in those emotions and can't get them out some times.

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Lydi !

 

You just explained to your friends on StrokeNet what your feelings are and why you can't express them.

 

My dear Lydi, uh, um, excuse me, BUT you just expressed your feelings.

 

Hit hightlight, copy and PRINT IT OUT FOR YOUR FAMILY.

 

They will love reading about your love for them.

 

Rachel

 

 

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Thank you, everyone for your kind words and suggestions. Lydi and Lenny thank you for taking the time to offer insigt from the survivor's perspective. I can't tell you how helpful it is. I explained it to my sister its as if the layer below the surface layer of emotion is cut off. And maybe Lydi and Lenny helped to further define that. But also you both offered that you do try to help out and show some sort of response to your caregivers and family. I get almost none of that-not even a good morning.

 

He has seen a psychiatrist and a psychologist and refuses to share anything with either of them. I just wake up each day and pray for just one small moment of warmth, a pat on the back, a "how are you doing", a thank you with having to prompt him. But the real issue I think is how can he offer anything of himself to me if he doesn't even do it for himself. That is the true sadness. I have come to realize that I am not the catalyst. My sister feels I do too much and now he just expects it. But there are other caregivers here who do twice as much as I do and don't seem to have this issue, or have just learned to live with it. I can do that and know in time the pain will lessen. I think all people need emotional contact on some level. I just think this is human nature. It is why we seek out friends and partners and find strength in family. I do not think we are a solitary species.

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I am also a carer to Eric and feel very lonely for the loss of the loving, caring relationship we once had. He doesn't show any emotion and also doesn't talk now even though he can when he wants me to do something for him. Thank you to everyone for your comments as it is very comforting to feel one is not alone and others are experiencing the same lose as I feel.

 

God bless all of you and I pray that we can learn to accept things the way they are not keep wishing that we could go back to how it was.

 

Gwendoline (Bev) :hug:

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Lydi !

 

You just explained to your friends on StrokeNet what your feelings are and why you can't express them.

 

My dear Lydi, uh, um, excuse me, BUT you just expressed your feelings.

 

Hit hightlight, copy and PRINT IT OUT FOR YOUR FAMILY.

 

They will love reading about your love for them.

 

Rachel

 

 

 

 

LOL I know I did, Rachel. I can be just as eloquent and all of that when I can sit down and let the expression come out ssssssssssssssssssslllllllllllllllllllllllllllllllloooooooooooooooooooooowwwwwwwwwwwwwwwwwwwwwwwwwlllllllllllllllllllllllllllllllllllllyyyyyyyyyyyyyyyyyyyyyy. But when I try to talk, the interaction time makes everything so much more difficult.

 

I'd have to give oral dissertations and ask people to take notes, then ask their questions 1 at a time, to be able to carry on a conversation. Maybe I should print out everything I have posted, especially in my blog, publish it into the "New Lydi Handbook" and give copies to those closest to me. laughbounce.gif

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Lydi,

 

it doesn't matter how you communicate your love,

 

it only matters that you do.

 

If you scrawl it out with crayon on a brown paper bag,

 

If you type, click print and put it in front of their eyes,

 

If you just reach, touch their hand...

 

Love is the message.

 

Love is the perfect message.

 

Rachel

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Hi Debbie, I am so sorry you feel alone in your relationship. I know that since the stroke I am not as intuitive of the people around me. I do not notice when something is wrong but I am lucky my partner tells me and I hate that I missed it, but the next time I do notice more and I ask him about it. If you were to talk it over with him. I am sure he will feel bad and will try harder to be a couple again because I am sure he doesn`t want to hurt you so he will remember to pay closer attention. I know I do.

 

mc

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MC: thank you for your support. Yes, I do believe he is in there and I still do believe I am the most important person in his life. He will react if I lose it, somehing I am trying to do less and less. Like kicking the dog, after he has made his mess. Dog has no clue and mostly neither does Bruce. I only asked him, after my rant, that he work on one positive thing a day. I don't care what it is, but just do it every day and then repeat tomorrow. He is trying. This morning I got a "Good Morning" after he woke me up twice to remind me the paper was there. But it was progress. for these small gifts I am grateful. Getting home from work tonight with a total bed change, even tho he told the caregiver he was OK, was not helpful. I took Sue's advise, did the work and am moving on. One day at a time. Thank you, Debbie

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From the side of a survivor. My husband asks me to be more affectionate with him,he's lonely and says he misses me, and I try. I just don't feel it as often. I don't remember to make things about him as much as I used to. My body is stiff and clumsy and I'm more concerned about my balance when we hug than I am in conveying my feelings. I'm going to try a little harder today though after reading this thread.

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Emotional withdrawal is hard to cope with as you mourn who the person was and want that back. In being the caregiver for my husband who is a leukemia survivor of 12 years, he changed and was no longer as affectionate or intimate as before. It bothered me for a long time but we have found a different level of closeness that seems to work for us. Being there sometimes takes finding a new way of being together. Mourn what was but embrace what you have now.

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hi ethel, i was just wondering as i read your reply about just once if he would and i fond that that statement made me feel that what you should do i think is talk to him and tell him just what your needs are and then maybe he will start to respond to your needs and ask how are yoiu doing?

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Debbie,

 

I so agree with you that the emotional drain is incredibly overwhelming. I am trying to emotionally remove myself from everything that's going on with Dan. I'm finding it very difficult to do. Hopefully not impossible, just difficult. When I'm at home by myself I can do it, but when I go see him it's hard. I think it's because we hurt so much for them. We hate seeing what stroke has done to our best friend, partner, and lover. We hate seeing what stroke has done to us. We're no longer the best friend, partner, lover; we're the nurse, cook, housekeeper. laundress, etc. We remember holding and being held. I'm concerned that I will forget what that feels like. Dan does tell me he loves me, but only after I say it before I hang up the phone. But that's ok, I still like hearing him say it.

 

I've decided that I have to start getting my life back a little. I've made a list of things that I want to do for me. Hopefully I can get started on the list, even if it's only #1 which is reading the paper with a cup of coffee in the morning.

 

(((((hugs))))) to you.

 

MJ

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Lenny: thank you for your kind reply. I have spoken about this to Bruce it seems sometimes on a daily basis. I try to reinforce polite behavior by waiting until I get a please and always hold on to whatever it is I have retrieved until I get a thank you. Some days he needs no prompt at all. Tuesday night he told me his TV program was more important than answering my question, which was what time would you like dinner? I have a little better understanding of the TV issue now, having heard from so many survivors. There are times when he is honestly involved in the program; I see him laugh and cry, but other times must be lost in his stroke world, trying to figure something out, or dealing with the loneliness or fear. He is working on paying attention to me this week, after the Tuesday remark. This I can see and it is very hard. I also came down with a GI bug for three days and was basically on the couch or in the bathroom and he was very concerned, kept all requests down, didn't complain about not going out or his quick meals-which he helped with. I only hope like other parts of his day, that are now routine and he knows and does them without prompt, this too will become a part of his normal new-life. Thank you again. Debbie

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Oh my, how I wish I had been able to participate in the live conversation of this topic. While Fred is able to express emotions, it's different now, almost 'formal'. Intimacy? Hard to remember. While he may be able to watch a movie or hear a news report that jokes him up, I can sit right next to him with tears rolling down my cheeks and he seems totally unaware. Fred did see a neuro-psychologist, but that was primarily for the rehab doc, to help determine when he would be able to return to work - he wasn't much help with the emotional piece. In the beginning, I had to be so 'on top' of all the medical stuff, that I was perhaps unaware of the losses - not Fred's, but mine. Once reality started to hit, and hit it did, I knew I needed some help with processing it all and finding new ways of doing things. Here's the point (sorry so long winded)...I've been working with a psychologist myself, one who is versed in TBI, rehab, etc. and not only is it helpful to me, but I am learning ways to help teach Fred what I need from him. It seems so odd at first, but, if you think about it, it really isn't that different from learning to walk again, eat, etc. My hubby is still a work in progress, WE are still a work in progress. Ethyl, I do hope that you are able to find a way to live with the emotional changes - for me, this has been one of the great challenges, and what makes it even more challenging, is that it's a challenge that really isn't visible, so others, who don't know this journey, find it difficult to understand.

 

Thank you so much for sharing where you are at with this - not that misery loves company, but there is indeed something to be said about not feeling like the only one facing such a challenge.

 

Peace.

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Oh my, how I wish I had been able to participate in the live conversation of this topic. While Fred is able to express emotions, it's different now, almost 'formal'. Intimacy? Hard to remember. While he may be able to watch a movie or hear a news report that jokes him up, I can sit right next to him with tears rolling down my cheeks and he seems totally unaware. Fred did see a neuro-psychologist, but that was primarily for the rehab doc, to help determine when he would be able to return to work - he wasn't much help with the emotional piece. In the beginning, I had to be so 'on top' of all the medical stuff, that I was perhaps unaware of the losses - not Fred's, but mine. Once reality started to hit, and hit it did, I knew I needed some help with processing it all and finding new ways of doing things. Here's the point (sorry so long winded)...I've been working with a psychologist myself, one who is versed in TBI, rehab, etc. and not only is it helpful to me, but I am learning ways to help teach Fred what I need from him. It seems so odd at first, but, if you think about it, it really isn't that different from learning to walk again, eat, etc. My hubby is still a work in progress, WE are still a work in progress. Ethyl, I do hope that you are able to find a way to live with the emotional changes - for me, this has been one of the great challenges, and what makes it even more challenging, is that it's a challenge that really isn't visible, so others, who don't know this journey, find it difficult to understand.

 

Thank you so much for sharing where you are at with this - not that misery loves company, but there is indeed something to be said about not feeling like the only one facing such a challenge.

 

Peace.

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Interesting week. The washing machine broke down on Wednesday. I called repair service and best they could do was next week. I hit the operator and got a very young, customer sevice rep. I explained that I lived with a disabled individual and could not possibly function without a washer for a week. She was able to schedule repair within two day. Bless her.

 

However we are in a series of bad weather storms, I have to rinse out all soiled clothing and basically stow it on the deck, on racks, during the rain, as best I can.

 

Bruce notices the extra work, even tho he knows the washer is down. Even told me to shut off the water and restart as a diagnostic. Didn't work, but he was cognitively on board.

 

I asked only to please pay attention. Overnight he has no control, and I understand that. But while awake, he can at least tell me if he has had an accident rather than wait for two and a total clothing change. He did great. Even toiletted with Cathy, which is a first.

 

However, tonight, after the repairman came and Bruce knew it was fixed, we are back to square one. Repairman came while I was still at work. Jen called and said he would be done before I got home. Repairman went through everything with Bruce and Jen, Bruce wrote the check. I am thrilled. Carl had cancelled for tonight, so my big BJ's shop was put off and I only had three days of laundry to deal with and Bruce would help. Except he feels he is off duty and causes a total change before dinner.

 

I know I do not count, but Bruce was on board for over 48 hours. He was expected to make his own dinner-cereal and wait up until all four loads of laundry were done before bed. But in discussion, my point was pick one goal, something he is willing to work on for however long, every day for one week. He gets all the help he needs, but it is up to him to remember and ask for that help. My suggestions: read 1/2 hour every day without the TV on; go out on the deck and tend to his flower boxes; make his own breakfast and clean up afterwards. My thinking is take control over one small aspect of your life, work on it faithfully for one week and see where we are at.

 

I finally have a respite day on Wednesday with Cathy able to come for a few hours so I can get some of my stuff done without taking time from work. Bruce is already not happy about this, but it is kind of my step forward towards some time for myself. As a fellow co=worker with small children responded, you just want to get a chore done without all the extra hooplah=shower, dress, WC, transfer, etc. And yes, she is right. Just the freedom to go without any baggage. We shall see, Debbie

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Debbie - I'm so sorry to hear of yet another spot on our canvas of life (lol). When Sam first came home from the hospital in mid-Jan of this year, he actually washed dishes a couple of times while I was at work. Lucky my work was slow this winter/spring and I was only away from home 3-4 hours/day. We have Corel dishes and plastic tumbers, so nothing can break. However, (long story- short version!) - he decided that his left hand/arm hurt too much and he can't wash dishes any more. Every time I try to discuss ANYTHING - I get frozen out. At least Bruce is still willing to try. I can't get any verbal commitments from Sam except that "I will take my anti-depressant and my BP pill - no aspirin therapy any more and no cholesterol packets in OJ".

 

Keep pluggin away and don't back down. That's what I am working on now - trying not to backslide on things I know that he can do.

 

Hugs to you juggle.gif - Kathy

 

BTW - he did remember our 23rd anniversary yesterday and I had a dozen red roses when I got home from the store. He ordered and picked them up all by himself, so I know that he can do things, just like you know Bruce can do things. Goode luck, Kathy

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Kathy: I saw your post about the flowers and I am still smiling and a bit crying. How precious! Debbie

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I don't know where my stroke was and there all different but I thoughth I would put this out there. Has anyone going with sex since their stroke my wife says she can put up with it. but I've seen a lot of changes with us. I no this is a defficult question but I had to put it out there.

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RBM: sorry, honey. The answer is no, at least here. Bruce says he does get some reaction from the washing when he is incontinent and I did notice occasionally he will surf to a porn channel, he also likes the "girls gone wild" commercials. So interest is still there to some extent for him.

 

For me, personally, last thing on my mind. Sometimes I miss it. It was suggested in a thread a while back that we caregivers may have to help out and initiate, but for me, read it and and thought, OK, I'll keep that in mind.

 

Our intimacy continues nevertheless. Lots of hugs, caresses, kisses during the day. Bruce gets up first but not without a cuddle first and always at bedtime. A hand hold often and those intimate looks that only a long time couple experience. I know what he is thinking and he me-kinda a telepathy and always fun to talk about later.

 

Our intimacy mostly now is his shower. Now that I am comfortable getting him in and out of the shower safely, with the shower bench, that seems to be our time together. Some days we work on him being more independent in his shower and some days it is quick in and out due to our schedule. But it is funny in that that is the only thing I never get upset about when he won't shower with the caregivers (we have them 5 days a week. He has to shower after the pool, with Jen two days a week).

 

Do I miss sex-yes. But Bruce and I have always been deeply connected otherwise as well and for now that is enough, at least for me. Debbie

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