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     That describes me! My husband had a hemmoragic stroke 2/16/2018. That stroke took everything from me. On that day I lost my marriage, my husband and my life as I knew it! Nothing will ever be the same. My husband was 62 and I was 52 when it happened. At first I was a real trooper! Determined to help in whatever way was needed. I felt lucky because my husband didn’t seem to lose very much from the stroke. It seemed as if it were all physical. He still had his quick wit, he only had a slight slur which eventually cleared all together. 

    After 3 weeks in the hospital we spent the next 6 weeks in a rehab facility. He was doing really well. Progressing very nicely. It was very encouraging. The day before he was to be discharged he didn’t seem quite right. I brought it to the attention of the nurses and docs. They took him for mri’s and CT scans. They came back saying they didn’t show any changes.  They tried telling me it was because of the meds that he had been on for about 8 weeks that were discontinued earlier that week  (Lyrica). I believe he had a TIA stroke. The kept him in the rehab only one extra day and then released him. 

     When he had the stroke we were in Florida. I on vacation and he on a business trip. I had driven to Florida. He told me to stay there since he was going to be there for work and we’d drive back together. We reside in Texas. The trip was a long one to say the least. Since the TIA stroke he spoke very little. He wouldn’t initiate any conversation and when he was asked a question his reply’s were as brief as possible.

     Since we’ve been home over a year now it has been very difficult. Now I find myself being very angry! My husband has a very short fuse! He’s rude, impatient and very insensitive. He sleeps all day everyday. He never wants to do anything. On the rare times I can get him to do anything he is complaining of pain within an hour.  There is absolutely no intimacy between us. My role has been reduced to caregiver only. 

     I suppose I am just a very selfish person. I’m not ready to give up physical activities or sex. I can’t imagine never being intimate again, to never be touched or kissed or held in that special way. I’m too young to lose that. But what am I to do?  I miss my husband. I wish I could get him back. I know that there is no way I can turn what is left of my husband back into the man I married. It’s just not fair!

     I’m also very angry at the fact that my husband has 3 adult children and not one of them has even made an effort to see their dad since he had his stroke. They are all very selfish. I guarantee they’ll be there when he passes away trying to make claim on anything he had!

     My husbands best friend lives across the street from us. However, even that relationship has gone by the way side. It’s so sad to see that happen.

    People just don’t know how to act around or treat my husband. He can be very difficult and sometimes even embarrassing too. 

    I tried finding a support group to go to. The one here was geared more towards the stroke survivor, not the caregiver.

    I hate strokes. I hate what it has done to my husband, to me and to our relationship. It’s very depressing.

 

     Thank you for letting me vent. Like I said, I suppose I am just being selfish and petty. Maybe I’m just acting like a spoiled brat. If I am, so be it. I apologize. 

 

Chris....

 

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Hi Chris, I'm a survivor not a caregiver, so my response may not be what you are looking for. Although I'm sure one of the caregivers will be along to answer you shortly too. 

First up you are not being a spoiled brat. This thing is hard from both sides of the fence.  It sounds like the TIA (second stroke) has affected both your husband's speech and his emotional centers.   Although he may just be being a sh*t because he feels sh*tty and with his speech affected he has no other way to express his own frustration and anger.  He may not be speaking much because he either can't find the words or can't get them past his tongue. One crazy thing about stroke speech effects is that swear words and anger seem to use a different part of the brain to everyday speech so those things can be said when other things can't.  Also one thing often lost in a stroke is the ability to censor and control your expression of emotion. we call it "no filter" it's common and takes much training/work to overcome.

 

Sleeping a lot is also common it's part of the brains recovery mechanism.  Let him sleep and get your stuff done while he sleeps. Get out and get some exercise, build up your own energy and resilience, do something that makes you feel good.

 

I don't believe the man you married is not in there somewhere. He's probably wailing at the bars of the cage his body has become. It sounds like you need to try and get him into some sort of residential rehab program for a few months. It it still early days in his recovery (this thing is measured in years not months) and much can be done with therapy.  If there's no inpatient available get him into out patient or in home therapy.  Although therapy needs to be something he wants to do and is willing to work at if it's going to achieve anything.  Have you tried asking him what he wants? and explaining how his behaviour is affecting you?  From what I've seen Men are much harder on themselves than women when they suddenly find themselves unable to do the things they used to do, the loss of control over yourself is very hard on the psyche.  finding ways to give him back some control may help.

 

Also don't forget to look after you. Caring for the carer is just as important as caring for the survivor.

 

Have you actually asked his kids for help and given them something concrete to do?  Make a list of what you need help with and make a point of using it. write the kids off only once they prove they can't/won't help. Many people are busy with their own lives and don't know what to do, so they do nothing.

 

Hang in there it's not as bad as it feels right now.  Feel free to rant and wail here when you need to. We will listen and understand.  We've all been there and done it

Hugs

-Heather

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Hi Chris

 

At first, my husband didn't cope well. I found myself being caregiver to my caregiver!

 

Since I'm the survivor, I don't think I have any real advice for you. 

 

All I can say is that he's trying to figure out the new person he has become.  Unfortunately there is no time limit for that.

 

Please feel free to come here and talk  whenever. 

 

That's what we are here for. 

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Chris, There's so much that I want to say to you, but I would probably overwhelm and confuse you. First off, you don't sound selfish at all. Unfortunately, stroke can affect everyone in the- family, not just the survivor. Your life was affected too. This isn't what you signed on for. And no one asked you if you wanted to change course mid-stream, did they? Bottom line is that you have every right to be angry.

   There are several explanations for your husband's behavior. One is that he had stroke damage in the part of his brain that regulates behavior. If this is the case, he may not be aware of it, and may not be able to control it even if he is aware of it. Have you tried to talk to him about it? Another possible cause is medication. Sometimes the side,-effects of meds are worse than what the med is trying to cure!  Is he in pain anywhere? By that, I don't mean little aches and pains, but severe, constant pain.

   You also mentioned that he wants to sleep all of the time, doesn't want to go anywhere, socialize,.and has no sex drive. These behaviors can be caused by any of the above, or depression. It might be worthwhile to take him to his doc, and see if an antidepressant is worth a try.

   In fact, you might benefit from an antidepressant, too, and maybe some individual counseling to help you cope with all of the changes in your life. Best, Becky

 

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Chris, 

you have verbally stated what so many people think  I respect the honesty and , speaking from a survivor, many of your thoughts are what I thought about my husband ( now ex but not entirely stroke related)

I felt horrible for him to have to deal with me. It took a while for me to gain some of me back. There is a balance we have to make and you are grieving your loss and that's normal.

http://www.strokeboard.net/index.php?/topic/857-the-five-stages-of-grief/

 Grief can come in all different times and stages.. there is no order 

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Chris

I can speak on behalf of your husband as I too had a stroke and spent 6 weeks in the hospital and another 6 weeks in rehab, i'm that guy that could work non stop, could fix anything and did, wife did not work and life was for the most part great other than little things that pop up unexpectedly,  I feel terrible, I think I let my family down, I cant work, have practicality zero stamina, i'm dizzy all the time.

I will tell you it does not make me feel like the man of the house, rather if make me feel like the one that caused it all and its tough living with that, one of my daughters understand but lives 550 miles away, I don't want her to worry about me she's got her own life, the other two are tired of hearing about how I don't feel good most of the time so I just hunker down and keep to myself. 

As far as my wife she told me 4-5 weeks after getting out of rehab she wanted to leave and to be honest she has a new significant other in her life that happens to be her best friend another women, I can deal with most of it but the last part tears me apart and I just stay home most days.

Don't give up on him, I know its hard but without you and your smile he will be broken beyond repair unless you cant take it any more or he is violent,

Hang in there because you have something, your husband and we have lost our souls or what makes us who we were

Strokes are nasty and ruin lives, try to work thru it

Ed 

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To edkel1

    Thank you for your response. I think of your words when I start to get annoyed with my husband. It does make it a little easier. I'm not saying it was a cure all but it helps. I just wanted to thank you! I wish the best for you!

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Thank You and i'm glad I could help you out.

Remember all you need to do is just ask and someone will be along with an answer or idea that might help.

Don't give up on him unless it turns violent and remember those vows we all took, " In sickness and in health "

Good luck

Ed

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hi chris :

 

stroke affects whole family, I feel its big adjustment for all parties involved, but together you can rebuild your new normal. I stroke at age 34 which left me paralyzed on my left side & retired me from the job I loved, I never thought I would find joy in living again, but together we have built our new normal, its different but still very enjoyable, you need to hold the fort till your husband find its footing in the ground, I am sure he would have done the same for you had role been reversed.

 

Asha

 

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No apology PLEASE Chris. I had a hemorrhagic stroke in Feb. 2015 and am familiar with all you speak to. I was 64 at the time and my wife and caregiver was 59 at this time. Let me reread your content a few more times the next day or so and see if I can offer any hope to you. You are so right, this is not fair to anyone involved in these things.

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Thank you for your reply. You sound as if you have made a remarkable recovery from your stroke. I wish it could be that way for all who have strokes. I look forward to reading what else you may have to say. It really does help. Thank you again! 

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Yes 

I have been waiting for 2 1/2 years and still nothing, the fatigue is relentless, i'm surprised I never started drinking...........................but I keep hoping when I wake up in the morning things will change in a positive way.........when donkeys fly.

Ed

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4.5 years in I still get the fatigue, but not as bad as it used to be. Check your possible medication side effects as I found these made it much worse to the point where I said no to certain ones and the doc had to find alternatives. Worst are the actual neuro drugs but sometimes lowering the dose and accepting the consequences was the better option. YMMV.

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I'm  also in the four and a half years post stroke and I have to say that although most of the other problems associated with the stroke have diminished somewhat, the fatigue part has stayed almost unchanged. By midday I am dozing at the lunchtable and without my afternoon kip the evening would be intolerable. By 9.30 I cannot concentrate on anything and even watching a fascinating TV program has to be cut short through exhaustion and I'm asleep within minutes of hitting the pillow.

Staying asleep is a different problem.

Deigh

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Deigh

I wish the medical world would put in the time and effort for stroke research and recovery as they have for HIV

I'm not saying to forget the HIV world but the consequences for HIV are very preventable where as strokes pick people for assorted reasons , some brought on by life style's and others are just the luck of the draw.

Ed

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I completely agree with you, here in New Zealand the authorities are concentrating on putting pressure on the overweight, non exercising couch potatoes. Whilst I do not disagree with that policy, I do not know even one of my stroke victim friends who fit that group. There must be warning signs that a stroke is imminent apart from high blood pressure.

Deigh

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A while back, I was researching something else and read that it is not uncommon to have the hiccups just prior to having a stroke. Now, every time I get the hiccups I almost jump outta my skin! Which is silly, I know,` just the thought......Anyway, knowing me and my anxiety, I'm not sure I want to know if there is a way to tell if you're gonna have a stroke, but that info may be extremely useful to others.

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becky1

Hate to say it but it's out of our hands other than living a healthy life style, don't let the hiccups make you crazy or sick just live life one day at a time and be happy your still with us :big-grin:

Ed 

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Hi Chris

 

My heart goes out to you.  I have seen the impact that my stroke has had on my wife and on our relationship.

 

 

The good news is that, depending on the specifics of the stroke, things can change.  After 3 1/2 years of being the patient to my wife's caregiver, being withdrawn and passive, doubting myself and waiting for others to make decisions and take the lead, I have started to force myself to occupy some of the space that I inhabited earlier.

 

It's not easy to do, and even less easy to start.  It took  a massive kick in the *beep* to get me going, but I am grateful for that kick.  I kick myself daily to keep showing up, and to keep moving (whether forward or sideways is moot).

 

I don't know whether your husband is capable of significant change, and if so, what will motivate him.  Or whether anything that you do can trigger or support that motivation.

 

I can only hope and pray that he will wake up, so that you can both start living again.

 

Until then, the least that we can offer you an understanding shoulder to cry on.  Others may have brilliant ideas.

 

PS:  Don't underestimate the impact that the stroke has had on you, in many different and subtle ways.  Try to care for yourself.

 

PPS:  18 months is not a long time in stroke recovery.  Some changes happen in days, some in weeks or months, and some take years.  To use a threadbare cliche:  "this is a marathon, not a sprint".  If you're a runner, there are several more appropriate analogies.

 

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Hi Paul

Best one is Strokes SUCK :@#*%:

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On 6/30/2019 at 8:06 PM, becky1 said:

A while back, I was researching something else and read that it is not uncommon to have the hiccups just prior to having a stroke. Now, every time I get the hiccups I almost jump outta my skin! Which is silly, I know,` just the thought......Anyway, knowing me and my anxiety, I'm not sure I want to know if there is a way to tell if you're gonna have a stroke, but that info may be extremely useful to others.

Becky my anxiety is extreme and I'm glad I don't fixate on my hiccups because I would be insane by now lol. Since my stroke (BTW 4 years ago today 😊) I get the hiccups all the time! Like every time I eat or drink something. I think of it as more an annoyance than anything. In my local stroke support group there are many of them with the same complaint. A lot of them get hiccups way more than they ever did before. Also, my step-dad gets hiccups that won't go away every so often too. He has even been to the ER with them and they give him some sort of medicine. I think told him that he has a sensitive vasovagal reflex or something I don't know. I've heard the same thing though. I can imagine how it affects you. 

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Well I have to say things have changed for the better in my life the last few days.

I had my right hip replaced 7-30-19, my surgery was at 9:30 and walked on it at 1:30, I was released at 2:45 so getting my bad hip taken care of was something I have been waiting on for about 8 mounts but what I never expected was a change is my eye sight,

If I look to the left its normal but if I look to the right it seems to not focus and makes me dizzy and feel bad ????????? Why,

I found that there were no pills that helped and going to eye therapy was a waste of time or was it ????? 

whats strange is I tried looking to the right a few days ago and guess what no more bouncing, I can focus now

what the hell happened, I don't think it had anything to do with my hip replacement and personally I don't care.

I'm thinking it was strictly coincidental, the vision is not perfect but before my hip replacement I would say my vision looking to the right was a 1-2 now its 8 so my point of telling everyone is don't give up, i'm not out of the woods yet but its looking promising.

I sure would like to ask Kelly her thoughts so if your out there look me up, I have lots of questions.

Ed

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Thar was a remarkable effect you experienced, I'm thrilled for you. As you say it doesn't matter how you achieved it, as long as it happened. Life is  full of surprises. I had a lifetime of white tinnitus noise in my ears. Since the stroke it has gone! 

Deigh

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I found this thread looking up fatigue. I too suffer  from "heavy  brain "afternoon, usually a 30-45 minute nap comes on. Then too by 930 or 10 pm I am out out for  night, it is not terrible, but does slow me down yeah and the hiccups after eating, and I sneeze often. So many annoying things linger from the stroke.Whose idea was this anyway?

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Ed I'm so thrilled for your unexpected improvements! I know how much the nystagmus affected you. 👏🏻 Woo Hoo!!! 😊

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