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I Am loosing connections with my Family. Something about my stroke makes me talk about it To people I dont even know. I believe its because it changed my life. I dont just say hey world I had a stroke no, Clients call and the expect me to come to their home and I can not. So i let them know. I have to be Honest. Its part of who I am. NOW.

 

It must upset my family. My Daughters Wife Mom Brothers sisters. The all ignore me when ever i bring up how i feel? This has been this way since day one.

 

I sent an email out talking about how its been going. I tried to keep it positive. Saying I am dizzy alot yada yada yada.... the things we all suffer from. My sister Dawn And brother Tom are the only ones to respond And Tom told me to start a journal so i would keep it to myself.

Well I feel bad................................ I say f them i do not need there acceptance to walk crooked through life. I want them to be a part of my life but two years of there not accepting me for me? I say no more. I told them to go to stroke board and read from time to time . I say no more. I will not be participating in upcoming events. Christmas And Thanksgiving.

 

Am I crazy you guys.

 

Do any of you ever feel like your family has put you on the back burner? roll there eyes when you speak like you dont see that, but you sure can feel it. I dont know umm it a dog eat dog world out their, i am the bone.

So Actions speak louder than words. I feel Bad. So now they all will be saying wheres BOB. They did this. They cut human conection. My loss but its also loss prevention.

 

Well thanks for reading I have enough steam in me to be the little engine that could.

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Guest furiawill

I Am loosing connections with my Family. Something about my stroke makes me talk about it To people I dont even know. I believe its because it changed my life. I dont just say hey world I had a stroke no, Clients call and the expect me to come to their home and I can not. So i let them know. I have to be Honest. Its part of who I am. NOW.

 

It must upset my family. My Daughters Wife Mom Brothers sisters. The all ignore me when ever i bring up how i feel? This has been this way since day one.

 

I sent an email out talking about how its been going. I tried to keep it positive. Saying I am dizzy alot yada yada yada.... the things we all suffer from. My sister Dawn And brother Tom are the only ones to respond And Tom told me to start a journal so i would keep it to myself.

Well I feel bad................................ I say f them i do not need there acceptance to walk crooked through life. I want them to be a part of my life but two years of there not accepting me for me? I say no more. I told them to go to stroke board and read from time to time . I say no more. I will not be participating in upcoming events. Christmas And Thanksgiving.

 

Am I crazy you guys.

 

Do any of you ever feel like your family has put you on the back burner? roll there eyes when you speak like you dont see that, but you sure can feel it. I dont know umm it a dog eat dog world out their, i am the bone.

So Actions speak louder than words. I feel Bad. So now they all will be saying wheres BOB. They did this. They cut human conection. My loss but its also loss prevention.

 

Well thanks for reading I have enough steam in me to be the little engine that could.

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Guest furiawill

I DON'T THINK YOUR CRAZY AND IT IS GOOD TO VENT.IT'S THERE LOSS, NOT YOURS. I PRAY EVERYTHING WORKS OUT FOR YOU.

-WILL

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Bob, I don't think you are crazy either. I feel like stroke changed my life in ways too. But be careful about falling into the trap of thinking stroke is who you are. You are much more than that. You are Bob, and Bob had a stroke.

 

We talk about our "new normal" and I am not going to talk about that except to say this. Our families and close friends seem to settle into our "new normal" before we do--which allows them to ignore the things we can't. They don't want to hear it because then they can't ignore it. I noticed, too, that the better I get, the more they think I am okay and the less they want to hear it.

 

I know they desperately want me to be okay and they don't realize that by ignoring it--it just won't go away. Talk about how stroke has changed your life to those who understand and keep things light for those who can't/won't.

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I remember the first few times I got on this stroke network being shocked to see that people were talking about their strokes like it was yesterday, and it turned out they were talking about something that happened ten years ago. That was when my husband was only a couple months post-stroke. Now being a year out, I totally understand it, and I am just the caregiver, not the one who suffered the stroke. I don't doubt that I will still be talking about it ten years from now, too. It's that big a thing in your life. And anyone who hasn't been touched closely by stroke will probably not understand. Luckily, my children and closest siblings let me ramble on when I need to. It would be very difficult if they didn't. I feel for anyone who doesn't have that support system, be it stroke survivor or caregiver. This stroke site has survived for a reason -- there are people here who understand. That's why I keep coming back.

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Bob: Bruce too is almost three years post. It is funny the change in our people over the last three years. His closest friend-7 miles away no longer comes or calls. Told his wife it was too painful. But even the wife does not come or call. Bruce is their son's Godfather. But we still have our dear friends who make any effort. Somehow I think when one gets into this stroke recovery and realizes the length of time it takes, they slowly move away and back into their own lives.

 

We had one Survivor here whose residuals were some aphasia, short term memory issues and a slight limp. His wife, somehow, decided that was fine and she moved on. He felt he just became a nuisance. They have a large, young family and I guess she just could not take care of one more. We have not heard from him in a while and as a matter of fact, thank you for reminding me, because I will certainly message him.

 

My sister was my backbone. She was here the night of the stroke. Next morning met her husband half way for him to take my neices home and bring her a suitcase. She stayed with us for two weeks. Then she came (2 hours away) every weekend for almost a year. She then got a new job and visits were twice monthly. Last visit it was 3 months and we had a very difficult, painful discussion. Personally I think she is sick of stroke (aren't we all), she is resentful and mourning of the relationship we had before stroke-I was up there at least twice a month-and voiced that she knows I will not (mind you, she did not say CAN NOT) be there for her if she needs me.

 

Like you, I continue to build my family and support here. I only Email updates to his college roommates who live out of state and call every weekend. We talked here some this week about acceptance and I really think that is the issue. One finally accepts what has happened, but how one choses to react to it is totally personal. Stay aboard, post often and know I am thinking and praying for you and your family. Debbie

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Bob,

 

I went through the same thing with my close friends and family. What I think was going on, and some of them have owned up to this, is that they had no point of reference from where to start to understand what was going on inside of our heads. they also felt their own mortality. If could happen to a loved one, it could happen to them. They didn't want to talk about it because they didn't know how to deal with their own emotions.

 

 

 

I know it has been said that our family and friends settle into our new normals before we do, but, personally, I don't think so. We settle into it before they can even come to grips with their own emotions concerning our stroke and all that it means to them. We need time to heal and establish who we are now. They need time to realize that we will never be quite the same, and that, but for the gace of God, there go they. Our friends and familt go through all the stages of grief that we go through, but they are grieving not only for us, but for how our stroke changed their lives forever too.

 

 

That doesn't excuse callous statements like "start a journal so that you can keep it to your self," but maybe it gives you some insight to why our friends and family can sometimes behave poorer than they normally would about our strokes. They get just as tired of dealing with the constant and permanent ramifications of our strokes as we do, but they have to do it from the helpless and confusing place of an "outsider."

 

 

 

We know what it feels like in our world now. We know how to adjust to the challenges we face. They are at a total loss about how to help us, the fact that we will never "go back to the way we were," how to interact with us without stressing or tiring us out, or what to do if we have a problem we can't cope with, let alone what the heck they would do if, God forbid, we had another stroke, right there in front of them.

 

 

 

They are scared people where we are concerned and don't know how to be open to us, let alone themselves, about it. Sometimes they rather ignore everything about our strokes than hear about any part of it. It doesn't mean they don't care, it just means they don't know how to deal.

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Bob, I am a caregiver for my dear husband, Oliver. He had a stroke on 1/16/11. This stroke changed our lives. I have to agree with Lydia. I want to do anything and everything that I can to help Oliver recover. However, there are times that I am so afraid. I fear the unknown. Will he has another stroke? What if he never walks? Will he just give up? Will we ever resume some type of normal life as before? I don't discuss these fears with him as I am so afraid that he will get so scared for the same reasons. I'm sure he thinks some of the same things, but we don't talk about it. He has always been the type of person that keeps things to himself, so I don't push him to talk about it. And I don't unload my fears on him. It's not that I don't care, because with all my heart he is everything to me. I just don't know what to do sometimes. I have to make all the decisions for him and our home. This is all new to me as well and during the first couple of months after he got out of hospital, I called the doctor or took him in at least once a week as I was so afraid. I'm better at it now, but still worry and sometimes just don't know what to do. My sons (26 and 35) come around every week, but truly they pretent like everything is normal again now that he is home. I have a very large family, but they hardly ever come around, some call, but everyone is so busy with their own lives. I don't take it personal, because if I ask, anyone of them would assist. I wish my husband would talk about it, but he doesn't, so I'm on my own. Hang in there. This network as been the best site ever for me. Judy

 

 

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:welcome: Bob,

 

Hey you are not crazy you just had a stroke and you know what you want and certainly what you don't want to hear from family or anyone else. Continue to get better as we all are trying to do. I accepted my stroke early on and am glad to be still alive and recovering with what I got left. It doesn't bother me what family or friends think anymore. I just be myself all the time. We can't control other people's actions nor thoughts.

 

I hope you come back and post/comment when ever you get the urge to talk with others just like you!

Fred!

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hi....what a great post you wrote and great responses. I FOUND FOR ME... AT THE BEGINNING OF MY STROKE FAMILY AND FRIENDS WHAT ASK ME..HOW I AM DOING FEELING ETC! NOW ALMOST 4 YRS POST STROKE, I FIND NO ONE ASKS ME ANYMORE,I THINK THEY JUST DON T WANT TO HEAR OF THIS ANYMORE, NOT THAT THEY DON T CARE CAUSE THEY DO BUT THEY ARE SO BUSY WITH THEIR OWN LIFE THAT THEY THINK OF THEMSELVES NOW NOT US ANYMORE.I FOUND I KEEP ALOT TO MYSELF, IF I DON T FEEL LIKE GOING SOMEWHERE, I DON T GO , IF I DON T WANT TO TALK, I DON T. I JOINED A STROKE SUPPORT GROUP 6 MONTHS AGO, AND I HAVE MET PEOPLE LIKE ME, I VE MADE NEW FRIENDS, WE GO RESTAURANTS OR TALK OR PLAY CARD OR BINGO AND THIS SITE HAS HELP ME SOOOOOOO MUCH! I VE GOTTEN SO MUCH SUPPORT HERE AND ..MET WONDERFUL PEOPLE HERE. PATTY

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:welcome: Bob,

 

I don't think your crazy either! I have a brother who lives in Raleigh, NC and I live in Carrboro, NC. He rarely comes over to see me. Then I have another brother who lives in Taos, NM. He would come over and see me except for the fact that he lives so far from me. I call them more than they call me. It's the same with close friends. We all have to stick together here on Stroke Net, since we are all one family dealing with stroke issue.

 

 

Bruce Schwentker(Hostbruce)

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No Bob i don"t think you are crazy at all if they can"t accept who you are after having a stroke then it is your family loss. I find that most people in friends and even in families that it is very hard to accept you as you if you don"t have to deal with the stroke. No one knows really what you are going through the stroke survivor does understand your feelings and your pain we are now one big family, and dealing with stroke issues.

All the best in your journey of recovery bob. Just remember bob no you are not crazy and if your close friends or family continue to distance to you it is definitely your family and friends' loss.

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Hi BOB~

 

You have found a safehaven here on stroke board with special ones who understand &

accept you for who you are today! At first when I was feeling down as you about my loved

ones who couldn't understand or get to know the "new me" after my hemorge & stroke I had

a support group. We moved to a smaller town for close support of friends yet I lost a

group who could identify w/ my condition. My husband & I had 4 children (2 just newly adopted)

When in rehab just after brain surgery to correct AVM that hemoraged I remember the day i

left a nurse said "Nancy remember your family will always see you as normal" So after years

of not being as they knew me before stroke it took several years for them to adjust. In fact

I have a daughter now who I have to watch what i say as if i say something wrong she will

get frustrated w/ me. I refuse to give up on her but it's just different. The love is still

there. But I can't relax around her. Maybe when she gets older my husband says she'll under-

stand. I still try to communicate w/ her & ask her about her life.

 

As far as your family, if your not comfortable then gracefully stay home rather than not be able

to be yourself. please don't give up on them, they still love you, may be hard for them also.

Just a thought. But keep pushing forward :happydance:with your recovery doing exercises & theraqpy

at home to strengthn your muscles. This site was an anchor for me & still is, knowing others

can identify with different things that come after a stroke that we have to deal with. I was not

suppose to live(they couldn't get bleeding to stop)but I pulled through by the grace of God. I have

a wonderful husband(not always easy) but he is a support. I am thankful to be alive to watch my

children grow up.

Take care my friend!

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Thanking you ( all ) for your very well thought out words of the wise. I am so grateful.

:hug:

 

 

Having this site and you folks Is all the suport i need. Thank You

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:welcome: Bob,

 

I don't think your crazy either! I have a brother who lives in Raleigh, NC and I live in Carrboro, NC. He rarely comes over to see me. Then I have another brother who lives in Taos, NM. He would come over and see me except for the fact that he lives so far from me. I call them more than they call me. It's the same with close friends. We all have to stick together here on Stroke Net, since we are all one family dealing with stroke issue.

 

 

Bruce Schwentker(Hostbruce)

Well said Bruce. Because we are all survivors and Family. We understand and support each other.

-Will

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Bob,

 

When I feel people start to pull away, which I am already seeing and it has only been 6 months since my first stroke, I simply tell them "I am not going to beg you to remain my friend, I have others. But ask this of yourself. If you had a stroke, heart attack. or some other type of accident that incapacitated you, would you want me to treat you the way you are treating me? And also, God forebid, if this is your last day on earth is the way you want to spend it?" Then I just walk away leaving them with their thoughts. If there is any good in their hearts I usually get an apology, if not they were not worth having as friends in the first place and yes this includes family members.

 

Just my 2 cents

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I've found that alot of people don't understand or know how to deal with it. This network is very good for me in that way because everybody here knows what I'm experiencing & understands....It doesn't necessarily mean that Family doesn't care when they react the way they do, they're just not sure how. Heck half the time I wonder why I react to things the way I do....Just hang in there & do the best you can, it may not be good enough for someone else but who cares as long as you know you tried....smile.gif

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i feel the same way left in the cold by my family. the stroke cost me everything i had financially, my body and mind and more. yet they think a couple cards is somehow going to help. im not going to christmas, does anyone in my family care? no instead my dad is calling a few mutual friends we had to state their case, their busy etc, etc

yet i see them on facebook talking about the relaxing weekend they had etc.

couldnt even come visit me, anything to help, my poor wife 2 hours of sleep a day, taking care of me and working full time.

cant get any assistance as our governor in wisconsin froze assistance, told to rely on family, families big help is about $200 in gift cards and food, no real support

my wife and son left to suffer, doing all they can so we can live. im probally going to end up in a nursing home, as my 'family' is busy putting in custom bars, buying big screen tvs etc and bragging about it on facebook

so yeah, youre not alone :)

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Long before my strokes I had another health problem that could plunge my into the depths of despair...one very few people understood and thought I should be fine because I looked fine. I learned way back then that "family" means very little in some cases and that in other cases family will make things worse.

 

But more importantly I learned that as hard as it is and as "unfair" as it is, I can't depend on them. But that doesn't mean that hope is lost. There are agencies, foundations, volunteers and strangers out there who want to help someone else. This network is proof.

 

Its been a "white knuckle" week for me so I'm doing the same things I'm suggesting to you. If you need to, go in your room and cry your eyes out but when you're done, go wash your face and come out of there ready to start swinging again. Pick up the phone and ask someone for help...anyone. Maybe you will hit a brick wall but more likely is that you may be told who can help. Keep calling...don't let one "no" stop you. You will find the person or persons who will say yes.

 

There ARE good and kind people out there; people who want to help and who want to make a difference. Don't just wait. Reach out.

 

Jamie

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Long before my strokes I had another health problem that could plunge my into the depths of despair...one very few people understood and thought I should be fine because I looked fine. I learned way back then that "family" means very little in some cases and that in other cases family will make things worse.

 

But more importantly I learned that as hard as it is and as "unfair" as it is, I can't depend on them. But that doesn't mean that hope is lost. There are agencies, foundations, volunteers and strangers out there who want to help someone else. This network is proof.

 

Its been a "white knuckle" week for me so I'm doing the same things I'm suggesting to you. If you need to, go in your room and cry your eyes out but when you're done, go wash your face and come out of there ready to start swinging again. Pick up the phone and ask someone for help...anyone. Maybe you will hit a brick wall but more likely is that you may be told who can help. Keep calling...don't let one "no" stop you. You will find the person or persons who will say yes.

 

There ARE good and kind people out there; people who want to help and who want to make a difference. Don't just wait. Reach out.

 

Jamie

 

Well said Jamie. I just want to add. Ask someone who is busy, they always find time for important things. If you ask someone who is not busy, chances are they wont have time to help.JMO

 

mc

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hi Bob,

My two bits worth:

Fact: Stroke is a life- altering event, a 'biggie"

Fact: Stroke changes relationship dynamics.

Your response to your stroke, your thought processes,attitudes etc. are not relevant to your family- they don't understand bcos they haven't been through it.

You are the one who has to come to terms with the new normal and re-invent the new you and just handle the challenges posed by day to day living as they arise.

That being said, you have to work hard at staying positive and cheerful and to embrace the attitudes and perspective thatkeep you motivated to stay focussed on your recovery.

Do cut them some slack and keep in mind that they too have to get used to the new you.

Not sure if this helps,

love,

anna

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My friend George had a stroke in November. It was bad-- he couldn't talk or swallow; he might still have the gastric tube now. I don't know -- his wife doesn't allow him visitors...

 

Last week, I got an email from George. Or at least from his Hotmail account. The grammar was a bit shaky, but that could be a stroke effect.

 

Except that the message basically just said he had gotten a great deal on a new cellphone though this chinese web site....

 

Yup. Somebody seems to have hacked his Hotmail account password.

 

And there's my dilemma. I can work with Hotmail to get his password reset, but that will mean he will have to do a fair bit of recovering before he'll be able to actually regain control of and access to his account.

 

This would all be much rasier if I could tell George what is going on and what he will need to do -- and, of course, help him get it done.

 

Penn

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Penn: call his wife and tell her what you discovered. Offer to help and ask her for suggestions as to what would work best for her and George. She may even ask you to just shut it down. Since you have not seen George, you really can't gauge how much he can deal with, so call his wife, offer your help and suggestions. Debbie

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I know how you feel. Since my dx of Sjogren's Syndrome, I talk about how it makes so tired,etc,etc. and suddenly, no one wants to hear it.And since you can't 'see' the pain,etc. ,everyone thinks you are fine. Same deal with stroke now. Double whammy. Daughter used to call me almost every day..but back when , I could help HER , with kids,etc.Now I can't so she rarely calls me.Hang in there.. it's THEIR problem..I've also had cancer and in their therapy, it says to avoid negative people. DO just that! Keep smiling- it makes people wonder what you are up to!!!!!!!

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I believe the problem is that other people cannot even begin to comprehend what it is like to be a competent normal person, one day, then permanently disabled the next. They cannot identify with you what it is like to wake up in the morning and know that you will have to limp around the house doing the stuff you used to do easily and competently, but now doing poorly and slowly with difficulty. And they are embarrassed because they know that they cannot say anything that will make it better. No, "give it time" will improve the disability, no hard work makes it any better, it is permanent, which is the greatest fear of all humans.

Certainly both I, and they are happier when I have a "genuine" health concern, like a broken arm, a cold, whatever, they can then identify with me and offer sympathy, which makes them feel good, and makes me feel a little less of an outsider

And the worst thing is that they have no respect for a disabled (and therefore retarded) person, so they do not want to have anything to do with you, it is embarrassing to have to relate normally to a person who is retarded, since that then, could identify THEM as retarded also.

My feeling is that I no longer produce oxytocin (the trust hormone) and that is why people do not want to have anything to do with me. My partner is a very popular man, obviously producing a lot of oxytocin, and I have reached the stage wherein I do not wish to go out socially with him, because his presence overrides mine, people do not wish to converse with me, when he is around.

Unfortunately I NEED people interaction, because life is so empty and lonely, now, anyway, and that people do not want to have anything to do with me makes life that much more lonely because I no longer have the ability to get out there and join in.

I have strayed from what I was planning to say, I am afraid. To me, it is the lack of understanding (maybe they do not want to understand) which then leads to lack of respect, and my own lack of oxytocin which makes me socially repellant

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