Louis Posted October 6, 2008 Share Posted October 6, 2008 This my first post after my newbie. I am having a rough time with family members who don't have an understanding of what a survivor goes through. They think that I can just do everything that I did before the event. I am having trouble sleeping and my wife says if I get out in the yard and work hard I will get tired My problem with insomnia is not about being tired. I have trouble with my balance and need to be really careful. I have a definite lack of self confidence. My mind doesn't function as fast as before. My adult son has worked in the medical field and he has a definite lack of understanding of this. He is very condescending with his attitude. He says I am being nasty when I tell him that I am not retarded and I resent being treated that way. I really will have a hard time if things do not improve quickly. I tried to give him some facts about survivors and he said he doesn't need to read that S#$t. I am at wits end with things as they are. I try my best but that is not good enough for them. What is a person to do. Link to comment Share on other sites More sharing options...
Guest Pjoy Posted October 6, 2008 Share Posted October 6, 2008 Dear Louis, My heart goes out to you! I am a mere caregiver and I know the veteran survivors here will know what to tell you! Please know you are in my heart and in my prayers!.....God Bless.........Joy Link to comment Share on other sites More sharing options...
Louis Posted October 7, 2008 Author Share Posted October 7, 2008 Dear Louis, My heart goes out to you! I am a mere caregiver and I know the veteran survivors here will know what to tell you! Please know you are in my heart and in my prayers!.....God Bless.........Joy Thank you Joy for your kind remarks. I see you are in Arab, Alabama. I have a friend who was in the Army with me who lived in Arab His name is Richard York. I was in contact with him about 5 or 6 years ago. H e would be in his early Sixties. Is there any chance you would know him? I believe he was in the insurance business. Thank you for your concerns. See you later. Louis Link to comment Share on other sites More sharing options...
dstraugh Posted October 7, 2008 Share Posted October 7, 2008 Louis, I can empathize with you. Your son should be ashamed of himself being in the health field and all. Both he and your wife need to learn a bit of compassion and understanding. To cut them slack, they might be going through the Five Stages of Grief. Stroke does affect the entire family - they need to understand though that you need their support as part of your recovery not their animosity. You didn't request a stroke being part of your life. Please know that we're here for you Louis. We understand. Link to comment Share on other sites More sharing options...
merichsen Posted October 7, 2008 Share Posted October 7, 2008 Louis, Sorry to hear of your difficulties with your family.It is not uncommon and in great part why this community exists. Unless you have lived through this it is very difficult or near impossible to understand. I sometimes wonder if I would have been able to comprehend what this is like if it had happened to my husband and I were still thinking as I always had. I don't know if I would have been able to fathom what it is like. Maybe you could get your wife or son to join to gain some perspective. Just because your son is in the medical field don't expect him to have a much greater understanding. I've come to believe neurologists don't even have a true understanding of what this is like. You're not alone. Here we do understand and we are your friends. You make perfect sense to us because we've been there. Maria :friends: Link to comment Share on other sites More sharing options...
Le Hermite Posted October 7, 2008 Share Posted October 7, 2008 Hey Louis..... Illegitimae non carborundum....(Don't let the *beeps* wear ya down...<G>...) Folks who ain't ever been around strokers, or had one theirselves sometimes have a real problem understanding.... No offense to yer son....but he don't know WTF he's yacking on...You may quote *me*... You ain't retarded, and I think you got through things pretty well cognitively....Can tell by your post.... I've got both my Doc and the therapists to admit up front...they really don't know what it's like.... They have lotsa experience dealing with strokers, but until yer there, you really can't *know*.... Or how tired you can get, just doing normal things like just walking, say, if ya have a balance issue....you gotta work at and be carefull with, something that most folks don't even have to think about...Lotsa work....multiple times the effort.... Funny thing...what winds up is that yer gonna hafta educate *them*.....<G>.... Tell them.....whenever you have to do something that's difficult....Tell them when yer trying something new.... Tell them when you try, but just can't... And *NEVER* be ashamed when you can't do something, to ASK for help..... I was gonna rehang a calendar, tap a small nail in the wall, and hang it.....Got the hammer and the nail..... Ya know....its a tap-tap-tap kinda thing....I fooled meself... Until I looked at it and realized....can't do this one handed (I tried to hold the nail with bad hand....no go)... Got the guy downstairs to finish up, had a coupla drinks, and we laughed about the whole thing... Actually...the conversation turned ribald, any abilities I might ever have, right-handed.... It would *never* occur to him, that this might be a hard thing to do... Wasn't until two months ago (outta 9) that I could shake somebody's hand with my right hand....and I still have trouble aiming it sometimes.....But I try, every time it's appropriate.....They already know I'm a stroker...I tell 'em.... They appreciate that I try...... Which brings up my last thing.....keep trying....let people know yer trying.... Lotta folks just don't know how to deal with ya, so you have to help them..... Link to comment Share on other sites More sharing options...
jjohnson Posted October 7, 2008 Share Posted October 7, 2008 Louis: My heart felt your post very deeply. I can relate so much. People just don't get it unless they walk the journey with you. They, I firmly have come to believe, they don't want to get or stay too close as they realize this could happen to them. I give Stroke Survivors the GOLD MEDAL if there was one because it takes a lot of hoopspa to get to the next phase of their new life. Just continue doing your best, you aren't on anyone's calendar but your own. You do what you can and just listen to GOD and your inner self. Take it one day at a time, stay positive, keep the HOPE alive and just be kind to yourself and love yourself. Pat yourself on your back and say atta boy when you make small strides.... If that was me with the nail, get, I would have put it in a frame and put it on the wall. I would be ONE with the nail. :roflmao: I, for one, are very proud of you and your accomplishments. Keep them coming, and I would love to see about your future successes and next post. I will keep you in my prayers. You know, family can be your hardest group of people to critique you. I'm doing a happy dance for you. :happydance: God Bless and keep the HOPE alive. Jan Brain Stem Stroke Survivor BELIEVE IN MIRACLES AND SOAR Link to comment Share on other sites More sharing options...
stessie Posted October 7, 2008 Share Posted October 7, 2008 Louis Oh, how we can relate. I stroked in April of '07 at the age of 57. I was in the hospital for over a month and then through much rehab. One of my difficulties, too, has been sleep. I got my days and nights mixed up and it has been hard. I do work in the yard a great deal and get tired but it doesn't make me sleep any better. Balance is a worry. I have sprained my affected ankle four times during the past year falling. I do water therapy and also exercises but I still limp and each of my falls has resulted in a sprained ankle. We are here for you, my friend. We understand. We know what you are going through. And, most importantly, we relate and care. My best to you. Stessie Link to comment Share on other sites More sharing options...
ksaul Posted October 7, 2008 Share Posted October 7, 2008 hi louis, first, i am sending you a BIG hug! i, like everyone else here, really do understand what you are going through. please remember we are always here for you! try coming to chat sometime...it can be very helpful and fun! there is also a super caregivers chat on tuesday evenings. you know, i am three years post stroke and most of my family still does not really get it. the only member of my family that has been on this site is my sster and she is awesome! my husband and the rest just don't want to deal with the issues we face. i always had a "just put my mind to it and DO it" attitude about life pre-stroke. i am the one who stroked and it has been a hard l process for me to understand life post stroke! perhaps some therapy can help...it helped me with my emotions and issues.....find the right therapist and ask your wife to join you. above all, please never doubt yourself...if you have balance issues trust yourself and don't try to prove anything to your family. shame on them for thier lack of caring and respect. do what you need for yourself....and remember we are here for you.....kathy Link to comment Share on other sites More sharing options...
fking Posted October 7, 2008 Share Posted October 7, 2008 Louis, Welcome to this site where you can find comfort and people like yourself that understand what it's like to have survived a stroke and the care givers who really care about their loved ones. Sounds like there may be a few family problems in your household that may take time to resolve. I don't think it's from a lack of knowledge of what you are going through or the stroke you had. Link to comment Share on other sites More sharing options...
AllanWilliams Posted October 7, 2008 Share Posted October 7, 2008 Hi Louis First a big Welcome to this site of wonderful survivors and caregivers, You will find lots of support and from everybody here they will answer any question to the best of there ability ,like it has been said before nobody knows the path you are walking unless they have done the same beefer. hoping your path in the future is better than the past since your stroke i cant add much that already has been said but try and get your family to join or come and visit this site and read some of the stories of survivors and how caregivers should react and help you . Best wishes Allan Link to comment Share on other sites More sharing options...
Guest Pjoy Posted October 8, 2008 Share Posted October 8, 2008 Dear Louis, I don't know Mr. York but will keep his name in mind, you never know who you might meet. We are a very rural town and I have always commuted to and from Birmingham to work. I stopped working last year and am now meeting people after 25 years! I hope things with your family will get much better soon. Best of luck to you and God Bless you!!........Joy Link to comment Share on other sites More sharing options...
anna2 Posted October 8, 2008 Share Posted October 8, 2008 hi louis, I can so relate with how you feel. when I get upset w/- my family I try to remember that stroke is hard on them tooand that sometimes the conflict arises from their concern and desire to help. People who have not been through stroke cant really understand, so cut them some slack. this site has been of tremendous help to a lot of us. hope things get better for you. Just focus on getting back as much as you can and don't get sidetracked from ur recovery. visit the site ofyen and learn from others' experiences of how they are coping with their issues. Good luck w/- ur recovery anna Link to comment Share on other sites More sharing options...
amie_1 Posted October 8, 2008 Share Posted October 8, 2008 Hi Louis, Hugs for you! I am a caregiver to my husband who had a stroke jan 2007. Don't let your wife or son run you down or make you doubt yourself. Maybe they would benefit if they went to a dr's appt with you, so the dr could explain about brain injury and the "healing" process, or if you could find a stroke support group in your area that you could all go to?? Just suggestions, my heart goes out to you. You have been through enough without having to to be made to feel worse. I know stroke changed their life as well and it is an adjustment for them too, not to excuse their behavior. I know things will be okay for you in the long run, it's just that sometimes the road getting there can be bumpy. Just keep doing your best and going at YOUR OWN PACE... and if you need to nap that's okay, it is the one of the ways of healing. Your confidence will come back slowly. hugs Anne Link to comment Share on other sites More sharing options...
PhilW Posted October 11, 2008 Share Posted October 11, 2008 Louis, sorry to hear what you are going through. Ive had the same problem too, unfortunately they will never understand as one told me you will never know unless you are in that situation yourself. I have too agree, for you & asto ido myself take each day as it comes, when you do things look at it as a form of therapy plus take it in your pace not theirs, the balancing as to mine hangs around for awhile, but try do alittle a time it does help to improve things slowly even try go down to your or own pool &walk in it its a big help . they say communication is the factor sometimes it works, sometimes not. I wish you all the best in your road to recovery .Lets hope it works out for both parties. We sometimes keep explaining to whoever what difficulties we have from time to time just to let them see its not easy. Best of luck Link to comment Share on other sites More sharing options...
arogers Posted October 11, 2008 Share Posted October 11, 2008 Dear Louis, I am sorry you are having a challenging time right now with your family and their apparent lack of understanding about stroke and the aftermath called recovery. As a caregiver who has cared for my husband 24/7 since October 25, 2004 I must confess I can't really understand why they seem to be having such difficulty - other than fear. I wonder if they are trying to pretend life will go on as before stroke and their only defense is to "push" you to recover on their terms. Some things you may want to try are: 1. Check out this: http://www.strokeboard.net/index.php?showtopic=2094. It's in the "Classic Postings and Advice Forum" and should go to your wife and son. 2. Have you started to receive any of the magazines from the National Stroke Association? Check out their website: http://www.stroke.org 3. Joining your local stroke support group - take your wife. As I said, I believe fear drives most of our misunderstandings and apparent lack of understanding. I'm not defending their actions however. The only way I know to relieve the fear is to understand stroke and recovery. I don't quite understand why they didn't get any education when you were in the hospital, and I hope they can get past the denial they are displaying regarding stroke and its affects. Please do browse the Classic Postings and Advice Forum when you have a little time. I think you will find some excellent information you can share with your family. Good luck to you and do keep us posted. As has been said, that is our mission. Warmly, Link to comment Share on other sites More sharing options...
Farrell Posted October 11, 2008 Share Posted October 11, 2008 LOUIS ~ I GO THROUGH THESE VERY SAME THINGS WITH MY FAMILY TO DATE. I HAD MY STROKE 13 YRS. AGO. THAT IS THE VERY REASON I WAS SO THANKFUL TO HAVE FOUND THIS SITE. I HAD AN AVM HEMORAGE IN THE EXECUTIVE PART OF BRAIN SO I LOST ALOT BUT GAINED MY LIFE AS THEY TOLD MY HUSBAND EVERYTHING THEY WERE TRYING WAS NOT WORKING,THEY WOULD KEEP ME ALIVE ON LIFE SUPPORT TILL HE GOT BACK. WE WERE FORTUNATE TO HAVE THE INSURANCE TO PROVIDE MORE THAN ADEQUATE THERAPY & SURGERY TO REMOVE THE AVM. THE LAST WORDS THE NURSE SPOKE TO ME WAS YOUR FAMILY (4 YOUNG CHILDREN @ THE TIME)WOULD ALWAYS LOOK AT YOU AS NORMAL EVEN THOUGH LOWER LEG IS STILL PARTIALLY PARALIZED. IN OREGON I HAD A SUPPORT GROUP, BUT IN IDAHO THERE IS NONE SO I GET MY SUPPORT RIGHT HERE, SO YOUR IN GOOD HANDS WITH PEOPLE WHO UNDERSTAND! :secret: mY HEART GOES OUT TO YOU TO. HANG IN THERE LOUIS, TRY NOT TO LET IT GET YOU DOWN.. YOU DON'T NEED THAT TO REINFORCE YOUR HEALTH & MOST IMPORTANT SELF-WORTH! :forgive_me?: FROM THE ONES WHO ARE CLOSE TO YOUR HEART~THAT HURTS! BUT OFTEN THEY DON'T UNDERSTAND NOR CAN THEY. SO BE PATIENT EVEN THOUGH IT'S HARD TO HEAR THAT FROM YOUR SON. I'VE PRINTED PAGES OFF TO HELP MINE UNDERSTAND BUT THEY DON'T WANT TO READ.(I'VE JUST STOP WASTING PAPER) THEY STILL LOVE YOU, IT TAKES TIME. I'M SORRY FOR YOUR HURT. YOU TAKE CARE NOW. THERE IS LIGHT AT THE END OF THE TUNNEL. YOUR FRIEND ~ NANCY Link to comment Share on other sites More sharing options...
achapman Posted October 11, 2008 Share Posted October 11, 2008 Hi Louis. My heart goes out to you. My family just will not accept me as "normal" although I have tried so hard and shed an ocean of tears. They seem to be ashamed of me and have no understanding of what my world has become overnight. I just can't adequately explain that I can't make the world so perfect again. Why, they ask, should stroke be so unlike other ailments. I lack the answers as much as they do. It's not easy to be identified as that "person who had a stroke" and has something "wrong with her." Maybe someday there will be answers. Until then, let's hang in there and know we have the support of this network when we need it. anne Link to comment Share on other sites More sharing options...
Louis Posted October 15, 2008 Author Share Posted October 15, 2008 Thank you to all of the people who replied to my post " Lack of Understanding" I Really think my wife is trying to cover her tracks. She was acting strange before my stroke. She is getting phone calls in the middle of the night. This is strange because if I have trouble sleeping she will not talk to me. She has a job where she has some supervisory resposibility and goes to work at like 5:00 am. She makes a fight out of almost any thing I try to discus. I want to think it is in fact a lack of understanding but the more time goes on, I think it is something else like an affair. She won't ever get close to me like I have the plague. As far as my son he has been brainwashed by my wife. He is just short of 42 years old, never been married and moved back home just before my illness. He is unemployed and is up all hours playing computer games. I am trying to be objective about the whole situation. I am 5+years older than my wife and we have been married since 1965. We have 3 children all grown and unaware of any infidelities with there mother. I hope this is not off topic too much but I have had crazy thoughts going through my head and needed to vent. Louis- Survivor since 18 May 2008 Link to comment Share on other sites More sharing options...
EarlKarla Posted October 17, 2008 Share Posted October 17, 2008 Louis, I'm so sorry to hear about your story. Let your son know that he had better be careful too! Although I haven't had a stroke, my husband had on September 13, 2008 at the age of 49 years young! In our situation, it's a bit opposite. I understand (sort of) what he's going through, but he is trying to get back to work, too early, everyone but him thinks. I hope things get better for you! Stay positive and let me know if I can help anyway! Take care, Karla Link to comment Share on other sites More sharing options...
myhome Posted October 17, 2008 Share Posted October 17, 2008 Thank you to all of the people who replied to my post " Lack of Understanding" I Really think my wife is trying to cover her tracks. She was acting strange before my stroke. She is getting phone calls in the middle of the night. This is strange because if I have trouble sleeping she will not talk to me. She has a job where she has some supervisory resposibility and goes to work at like 5:00 am. She makes a fight out of almost any thing I try to discus. I want to think it is in fact a lack of understanding but the more time goes on, I think it is something else like an affair. She won't ever get close to me like I have the plague. As far as my son he has been brainwashed by my wife. He is just short of 42 years old, never been married and moved back home just before my illness. He is unemployed and is up all hours playing computer games. I am trying to be objective about the whole situation. I am 5+years older than my wife and we have been married since 1965. We have 3 children all grown and unaware of any infidelities with there mother. I hope this is not off topic too much but I have had crazy thoughts going through my head and needed to vent. Louis- Survivor since 18 May 2008 Louis, Sorry to hear about what you've been going through. Everything you been mentioning is a sure sign that somethings going on. If you can afford it hire a private detective to follow her, you'll know for sure then. If she is having an affair, then you need to sit her down and tell her you know and where does she want to see the marriage go from there. Good luck, and look after yourself. Link to comment Share on other sites More sharing options...
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