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Guest hitcricket

He's not the man I married any more

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Guest hitcricket

My husband had a stroke about 4 months ago and since then he has changed so much he's like a different person. He can't understand why i'm not as affectionate as i was before the stroke. But i feel like he's a stranger and i don't have the same kind of love i did before. I try, but i just can't make it happen.

Of course, i don't tell him that. I do care about him and i don't want to hurt him. I know he still loves me and that makes it even harder.

I'd b interested to hear from anyone who's been through the same thing. I need help in dealing with this.

 

 

 

 

Thanks,

Donna

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Hi,

 

My name is Shayle, and I have several questions. How has he changed? What is the nature of his stroke? Why do you feel differently? Is he completely dependent on you for caregiving? Will he be able to return to work? Why aren't you affectionate? These are questions for you to considered and may assist you. You may not want to share them with us.

 

A stroke survivor during the first few months of recovery faces many issues. Will my wife leave me? How will I support my familly? Will I be completely dependent?

Will I get the needed services to improve? How much will I recover? How long will it take? Your husband may also be angry. He will be afraid to be left alone even for a short period of time. As he recovers, his outlook will improve. You must be very supportive and patient.

 

As a caregiver, you also have issues. Its tough being a caregiver. During the first year, you will handle many problems which you shared before. No matter how angry you are at him, be affectionate and supportive. Let him know you love him.

Discuss your issues with a social worker or other health care professional. Take a break from the caregiving. Go to the movies with a friend etc.

 

Best Wishes and my prayers are with you.

 

Shayle

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Hi Donna,

 

I've been fortunate that my husband's basic personality has not changed too much from his stroke. His deficiences are physical rather than emotional which I think are much easier to accept and deal with, from a caregiver's point of view.

 

According to a pamplet from the American Heart Ass. when someone's personality changes because of the stroke, it's refered to "quality control". I don't know if this your husband's problem (you didn't give many details) but if it is, this is how the pamplet describes quality control: "quality control refers to how well a person can guide and check his own behavior. This means doing the 'right' thing at the 'right' time. It's sometimes called social judgement------for example, a shy person may become immodest and aggressive; a quiet person may become loud. A man who's been cautious and prudent with money may now spend impulsively. Or someone who's always been aggressive and talkative may become brooding and uncommunicative. A previously talented conversationlist may become repetitive and boring..."

 

To me, it's easy to understand when a spouse of a stroke survivor with this type of problem says that she/he is living with a stranger. And from reading postings from survivors who comment that their spouses say they are different, I'm not sure that the survivors with quality control issues can even recognize these changes in themselves.

 

If quality control could be your husband's problem, there are some techiques for dealing with these kinds of changes and you should start doing your homework and research what you can do to help him relearn to check his behavior. A few lines in the above mentioned pamplet says: "People with quality control problems need information, not nagging. Their deficits need to be recognized. They need help compensating for deficits or learning to act differently. When they do well, they need to be told they're doing better. Appropriate praise is very important." If quality control is your husband's problem, as his wife you are the very best person to detail these changes to a professional. Start with his care team and tell them what is going on and see if they can point you to the right professional.

 

If the reason your husband seems different from the way he was pre-stroke is because his physical needs makes you feel more like his mother than a life-partner, then that's a whole different set of emotions that you two need to work through. If you could share a few more details, we all here at StrokeNet could probably give you more feedback. For example, I spent three years wiping my husband's butt; no where in the manual have I seen that listed as a prelude to a romance. :)

 

Jean :wub:

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My Mom's personality has changed too, a large part is still there but there's the other dark side that ruins all the rest. the dark side is the stubborn, belligerent won't listen to reason, I'm sick so don't expect anything from me side. It really kills me. I've tried so hard to keep everyone motivated but I'm running out of steam and desire due to the non-compliance. Hang in there...you're not alone. I often think the way we as the family and the way the patient handle all this is a test from God...I want everyone to pass, sometimes I just don't know how to do it.

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Guest pandora

DONNA, I AM ON THE OTHER END LIKE YOUR HUBBY HIS BODY AND MIND IM SURE ARE DIFFERENT EMOTIONS ARE PROBABLY RUNNING HARD . AND SO MUCH HAS TO BE RELEARNED BE HAPPY HE WANTS AND REMEMBERS YOUR LOVE !!!!!!!!!!!!A STANGER WOULDNT WANT AFFECTION JUST WAM BAM HE GROWING IF HE DESIRES YOU IM SORRY FOR YOUR FEELINGS AND THEN I DONT KNOW HOW BLOWN OUT OF THE WATER HE IS FROM THE STROKE LOVE HELPS EVERY THING GROW

 

 

 

 

 

BLESSINGS AND LOVE

 

PANDORA

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Guest ssanchez

I too have gone or are going through the same thing my Wife is not as happy as she use to be, she is the only one working at this time. I feel that I have failed her as a man she seems to get angry :angry: just about every day seing me here not doing anything to try to get the family up where we use to be financially but there is not much I can do to make the money I used to make . So no I am not the same person I was prior to stroke. I think I know my wife pretty well after 19 years of being with her. she knows and I know that there is an enemy that wants to destroy us and his name is satan.I know this, due to what I read in the bible and have learned from other scholars that have studied the bible and of course my faith. {angel} when we get into it. :angry: (arguing) we tend to take a time out from each other well I do any way and when we cool down we just appologize and pray. we are not about to let satan get his way cause he is not the one in charge now. We both have turned our lives over to the Lord and Savior Jesus the one who has died for our sins so that we can live forever and ever with him and the father in Heaven. {angel} I know this doesn't help with your situation but we all have gone through it.

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Guest HostLinda

Donna,

My name is Linda. I have been a caregiver for my husband Mike for alittle over 3 years now. It took 4 neuro drs and 3 years for someone out there to tell us what was wrong and had happened to my Mike. By this time Mike had, had up to 7 Mini Strokes and Many TIA's. As others have said the 1st year, I think is the HARDEST :( . You BOTH have alot of feeling you are trying to figger out.As for the Stroke Survivor, 1) How did this happen to me. 2) Could I have stopped the stroke. 3) what am I going to do now. 4) How will we pay the bills. Oh, I am sure I missed Many Feelings. As for a CareGiver, 1) Did I cause it to happen. 2) What do we do now. 3) How to pay the bills. 4) We he or she EVER be the same. 5) I want the person BACK that I married. 6) Did I miss something I Should have seen. Again I am sure I have missed Many Feeling here too. Those are just a few that I had. Yes Pam is right. As for CareGivers And Stroke Survivors. We ALL have to Greive the loss of the person as they use to be. I did this and it took me almost 2 years to Really except ALL the things and changes in OUR lives. This past Nov 2003, Mike and I had been married for 25 years. As for ME, I will NEVER live or turn MY back on Mike. I know he(Mike) Did Not Do This.. It Just Happened.. Yes, It took my a little bit to show Mike affection,Due to in MY Mind I was Really afraid I would cause him to have another stroke. I do know it will take time.. So keep coming to this site, alot of Good People in here.. Take care God Bless you Both.

Take 1 day at a time.. HostLinda

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Guest musicman

I feel the same way.My husband is only 55 had his stroke 7 months ago.A big one.I sit and cry for what we lost, every day I wish it would have been me instead of him.He doesnt want to live like this.I pray that he can live the rest of his life with less pain and suffering but so far it hasnt happened.I am sorry for your loss I dont know what else to say .

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JEAN:In your answer to Donna referencing Quality control....this is a source of frustration for me....Evidently the doctors, therapists, etc. told my Hubby I had a problem here...so my Hubby has treated me like a 3 yr old since...took away my credit card...

>I feel insulted on top of being raped by the stroke ....being raped is a good analogy...cause my dignity has been stolen along with my sense of self worth.

BS I was an impulsive person...if I saw something that needed to be done.... I went about doing it right away....thus, I got labeled IMPULSIVE....I felt like I had a scarlet letter "I" on my forehead...as if who I am/was is a dirty thing.....I realize now that I wasn't fully aware of my limitations... so I fell or bumped into something...what a crime! but I was made to feel as if I had committed murder or worse.

THERE IS SOMETHING TO BE SAID FOR LOOKING AT THINGS FROM THE PERSPECTIVE OF THE SURVIVOR....AS WELL AS THE CAREGIVER....

THE Carefgiver can only get their lead from the "professionals"...who appear to have a major grudge against the survivor....why? what have I ever done to them?MY Anger boils up inside me so that I'd like to do bodily harm...... to repay the emotional harm they have done....but, I keep myself in check and won't set the bomb in the OT department or send the white powder to the doctor.....Just Kidding!!!!!!! but I do feel like it whenever I think of how I was/am treated.

Give me a break, I do know the difference between right and wrong....and how I was treated was wrong....

Steven is absolutely right....this is a spiritual war

I survived 1/11/01 was 47 at the time rolling full steam at 300 mph ...I feel like I've landed end over end...trying to deal with the anger of the loss..it's like a death... as well as the frustation with the "professionals"....see above

Janice

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Donna,

I have experienced this problem I have heard my wife use the same words about meIt makes me sad for the both of you I would love to discuss this because I don't understand my wife now and deeply resent her. this is a hell unimaginable sent me into deep depression much better now. I fear divorce because we comunicate by snide remarks Its obvious he is not the man I guarntee you he feels used and discarded by you

email me if you want to discuss in detail

isokrzy

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Quality control my *beep* I think its a bunch of bunk most times Only in the most sever cases will someone flip a personality. I think this term was developed by caregivers at all levels to camoflage their helplessness and or inadequate abilities in relating to someone who needs so much of their attention.We survivors are very needy not bi-polarquality control cop out in my opinion

I'm sure it's difficult to be a care giver, but in the case of spouse care I say suck it up for better or worse baby now its worse time step up to the plate youcan't have your cake and eat it to.How would you like it if the shoe were on the other foot?

panzies,

isokrzy

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I want to add my 2cents worth....As the survivor, we are treated differently than before the stroke, I think , mostly because the "professionals" told our loved ones that we'd be diffferent....which alienates us... leaving us to grieve the loss by ourselves...yes, I do carry a grudge against my doctor and the therapists....although, I did have a PT who was "in my corner" rooting for me and didn't allow me to be swept into a corner to vegitate. but pushed me to improve physically....Dan was my angel {angel} .

They claim to be working together as a team for my good,,, ha! Whenever there was a pow wow to consider what was to be done with me....I didn't have any trust in my doctor nor the OT or ST to want to keep advancing me... My Recreational Therapist was the next in line to be on my side after the PT Dan. It's no wonder my family took the attitude of the majority....the doctor and other therapists....treating me as different person.....not giving me credit to be whom I have always been...Now after 3 years, my sister and friends say things like, " YOU SEEM LIKE YOUR 'OLD SELF', DO YOU FEEL THAT, TOO?" ......I HAVE ALWAYS BEEN MYSELF....MAYBE NOT AS SWIFT OR GRACEFUL AS BEFORE. I'm still me trapped in this broken vessel. Maybe we're all cracked pots,....just some of us have a more visable cause.

Janice

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The brain is a complex miracle machine and when a part of that mass is damaged by a stroke, that damage can cause everything from seizures to agressive anger to crying jags to personality changes as well as the basket full of physical results that we who come here to strokeNet know all too well. "Quality control" issues are not a myth developed by caregivers. They are very real to some, but not all, survivors.

 

I've talked to a lot of caregivers and occupational/physical/speech/recreational therapists over the past four years, and I can honestly say that I've never, ever heard of anyone being told to treat their care recipient like a three year old. If this is way some caregivers handle their lot in life, then don't blame the medical community. However, when a stroke survivor unzips his pants at the mall and wants to pee on a planter then it's a little outlandish to expect that his caregiver is not going to panic and react. When a survivor wants to buy 10 bags of dog food on sale (and she doesn't have a dog) is it any wonder that her spouse gets a little upset? These are the kind of survivor stories caregivers exchange while we're waiting for our spouses to do their therapies. Survivors and caregivers who deal with personality changes and "quality control" issues BOTH deserve our empathy. All strokes are different. Don't measure yours against someone else's yardstick.

 

Jean :wub:

 

P.S. I just read an article titled "Stroke Victims Anger Linked to Brain Injury". In it, the author talks about how they think that survivor anger may be caused (in many cases) by lesions on certain parts of the brain and not always by the grieving process of lossing their former life. (Lesions affecting the frontal, lenticulocapsular, and pontine base areas.) The article was based on a small study pool, but hopefully it will spur more research.

 

Jean is the care-giver for her husband, Don, who had a massive stroke May 21, 2000 at age 59. A few days later the family was told, "He will never be anything more than a vegetable." He was paralyzed on the right side, had no speech, and had swallowing issues. Don spent 101 days in hospital and had 5 months of intense, out-patient therapies. Since then to the present day, he takes part in speech classes twice a week. Now, 2004, Don can walk short distances with a cane (although he uses a wheelchair most of the time) and he works very hard at increasing his 60-75 word vocabulary. His intellect and great sense of humor are all in tact and he enjoys many of the same hobbies he did before the stroke. .

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Jean

I sit corrected....you're absolutely right....my experience is diffferent from anyone elses. For that I apologize...the professionals "mean well"...just don't really know what it's like in the survivors shoes....as well nor do I know what it's really like in the spouse/caregivers shoes.

 

My husband has told me...when I was feeling especially blue...when I was wondering what I did to deserve this drastic change...He said...'maybe it's not you who's being punished'....blew open my mind.

The survivor, perhaps had BS been the one who sustained the relationship and been the one who pampered the spouse/caregiver....Now the survivor needs/wants to be pampered and have their needs/wants waited on.

 

My cat doesn't expect anything from me other than to keep his food and water bowls filled...as much as I did before........Maybe you loved one is indirectly saying he/she wants/needs a dog...

Point is... animals accept you no matter what....caregiver/survivor-all the same.

 

For me, my bladder seems to have shrunk to the size of a marble when before it was the size of a walnut..... BS I used to say I had TWB (teeny weeny bladder)...now I have a terminal case of TWB....fortunately there are products available now that assist me....eg POISE I do get frustrated and embarrased by having to use this product...no one wants to admit they can't perform what's epected of them..as would you of a 3 yr old...potty trained

 

The bottom line may this: We behave as we're expected to... if the expectation is not what it was BS then the performance only measures up to what is now expected. Again, I may be writing only from my own experience, which may be totally different than anyone elses. Altho, I do think there might be something to the expectation/performance relationship.....

 

All in all, strokes steal the lives of the survivor and the caregiver...what is being done to prevent further lives from being disrupted? Maybe we all need to be educated.

Edited by jstern

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In response to the caregiver who doesn't feel as close to their survivor as before...perhaps it's they who need to adjust to the new circumstances...It's the old lemon/lemonade analogy.

 

Maybe it's time to take stock of the reasons that brought you together in the first place....what has changed?....is it something out of the survivor's control?(ie.the stroke side affects).....then who really has changed?

Janice

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survivors are supposed to be impulsive not caregivers allof a sudden they don't recognize their spouse how impulsive is that J stern that is exactly what I said without all the sugar coating this subject infuriates me because I live it. If i'm so different how come my babies still recognize me as daddy and love me even more?

Why? unconditional love too many spouses only recognize the contributions the other partner provided I loved my wife unconditionally when she did'nt provide much to the relationship I could have been a runner B.S. I had the looks, youth,carizma,money I stuck with it I expect the same respect! now its tough and you wimps go running,selfish! is what its called like it or not

 

isokrzy

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Hi Isokrzy,

 

The other day someone in chat mentioned that not ALL problems are stroke related. And it sounds like this could be true in your marriage. Any life-crisis (be it a stroke, the loss of a child, a bankruptcy, etc.) tends to bring out in a marriage all the foibles and problems that were there all along...just waiting under the surface. One sided relationships don't always stand up to the test that a life-crisis throws at us. With all the anger you express towards your wife, maybe you should consider seeing a therapist? Life is too short to hold on to what you THOUGHT you had, but didn't. Sometimes we have to decide if we want to fix what's broke in the marriage or cut our losses.

 

Also, after you've read more caregiver postings here at StrokeNet Work, I hope you come to understand how unfair it is for you to paint us all (caregivers) with the same brush. We're not all "selfish", "wimps", or "pansies" or do we deserve to be lumped together in the same boat with the way you perceive your wife.

 

Jean :wub:

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HI,jean,

That sounds funny,

My intention is not to lump all caregivers into onebasket. Just the ones who say " "their not the person I married" If I were a caregiver I know a wimp is not what I would be your onesided analogy is true. I have seen a therapist. They told me to find a support group so here Iam. Jean by the way if my comments don't apply to you just ignore them that goes to everybody.Frankly, I expected some back lash the truth hurts.don't be so uptite it's only my opinion.

Regards,

isokrzy

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Donna, I am a survivor and I think you should tell him how you feel. I would rather grant my husband a divorce than have him stay out of pity. It is bad enough that my life has been ruined, no need to ruin two lives.

 

2nd Chance

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Guest hitcricket

ISOKRZY,

It sounds like your marriage was in trouble even before your stroke, which is not the case with my husband and myself.

 

Please don't project the anger and bitterness you feel towards your wife onto me and the other care-givers in this group.

 

I understand your anger, but lashing out at us isn't helping anybody. We're all just trying to do the best we can for our loved ones. If I didn't love my husband I wouldn't be looking for solutions. It would be much easier to walk away, but that is not what I and my marriage is all about.

 

Strokes don't affect only the survivor, but to everyone close to them. We all have to deal with it the best way we can.

 

I'm sorry you're so angry and bitter, but the best I can do is wish you and your wife the best of luck.

 

Donna

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IT'S 2AM, I CAN'T SLEEP (WHAT ELSE IS NEW ?), AND I'M READING THESE POSTS, TRYING TO FIGURE OUT WHERE EVERYONE IS COMING FROM. OF COURSE, I THINK ALL CAREGIVERS ARE ANGELS, AND I MARRIED MINE TWICE.

 

I KNOW MY PERSONALITY HAS CHANGED. I AM FRUSTRATED, ANGRY, HAVE A MUCH SHORTER FUSE, AND A SHORTER SPAN OF ATTENTION. BUT SOMEWHERE IN HERE, I'M STILL MARTY. I CAN COMMUNICATE, HAVE A SENSE OF HUMOR, AND A POSITIVE OUTLOOK. MY KIDS ARE MORE ATTENTIVE (THEY ARE GROWN AND ON THEIR OWN), MY GRANDKIDS ACCEPT ME AS I AM, AND MY WIFE HAS ACCEPTED THIS CHALLANGE OF KEEPING OUR MARRIAGE AS NORMAL AS POSSIBLE.

 

LIFE IS SURE DIFFERENT. I DON'T WAKE UP IN THE MORNING, MAKE COFFEE, HOP IN THE CONVERTIBLE, GO TO WORK, AND SPEND TH DAY WITH ASSOCIATES AND FRIENDS. I DO DRIVE, THE CONVERTIBLE IS GONE, MY WIFE DOES MOST OF THE DRIVING, AND I'M A STAY AT HOME SURVIVOR. I HAVE WATCHED HER CONCERN WHENEVER I'M ON MY FEET, HER TEARS WHEN I FALL, HER ENCOURAGEMENT WHEN IN THERAPY, AND HER JOY WHEN ANOTHER FUNCTION I LOST COMES BACK.

 

SHE NOW WRITES THE CHECKS, MAKES MAJOR DECISIONS WITH MY INPUT, AND SHARES EVEN MORE OF MY LIFE. I GUESS EVERYONE'S ATTITUDE AND APPROACH ARE DIFFERENT. SHE'S A MUCH STRONGER PERSON THAN I EVER THOUGHT. SO DONNA, FIND SOME POSITIVES. IT WON'T BE EASY. I'M SURE YOUR HUSBAND IS AS FRUSTRATED AND ANGRY AS I AM. SURE I'M NOT THE SAME PERSON I WAS, BUT I'M STILL HERE TO TALK ABOUT IT.

 

OK, THAT'S ENOUGH. GOOD LUCK EVERYONE.

 

MARTY

 

P.S. JEAN, I DON'T BUY DOG FOOD, OR TRY TO RELIEVE MYSELF AT THE MALL. I DO BUY A WATERMELON SECTION EVERYDAY. I CAN'T STAND TO OPEN THE REFRIGERATOR AND NOT SEE PIECES OF CUT WATERMELON IN A BOWL. MY WIFE SAYS I GET A FREE RIDE WITH THIS OBSESSION.

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Hi Everyone,

 

Many times I've said that my husband's personality hasn't changed too much since the stroke, but still he has changed. It's the "new normal" that the medical community talks about and we're so used to it now that I tend to forget how he was before the stroke.

 

Some of those changes are: 1) He used to talk every waking moment of every day, and could tell wonderful stories. Some just funny, others with great life lessons. All were sought out by people at parties, etc. Now, a good day is when he can get out the words, "I want to pee" without me queuing him to extend the word "pee" into a complete sentence. 2) He had a very high IQ before the stroke---still has---but eveyone around him has had to learn to break our sentences up into smaller units for him to process. Even doing that, I often have to repeat things 2-3 times for him to understand. 3) There wasn't anything in the world he couldn't fix or build. Now, in speech classes he's still working to learn how to follow two and three part instructions. He can't write and can only read nouns. I could go on, but those of you who have been there, done that, know what I'm talking about. Plus this list doesn't include all the changes/challenges that come with the loss of the use of an arm, hand and leg.

 

What hasn't changed is that Don is a patient, hard working person with a good sense of humor. Laughter has gotten us through a lot of tough times. He did go through his angry period (like other survivors on this website). Fortunately, it didn't last long and we got through it without killing each other. And considering all the losses he/we were going through at that point in time, it's no wondered we were both angry with the stroke. Our saving grace, I believe, is that we never ever aimed our anger at each other. Many times angry out bursts would end with me yelling, "That Damn Stroke!!!" and as soon as he was able to learn the words, "Stroke, Yuck!" that became Don's let-off-steam" expression.

 

I often say, "don't use someone else's yardstick to measure your own stroke." All strokes are so different from mild to dead-and-buried. But we can all learn from each other's experiences if we listen with our hearts as well as our ears.

 

Jean :wub:

 

P.S. Marty: if you and your wife ever come up for a visit, we'll have a bowl of watermelon waiting.

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My job as a major caregiver is still ahead of me since hubby --age 56 -- had a major brain stem stroke on June 1st, spent 2 weeks in Critical Care on ventilator in drug-induced coma, has trachea tube to help him breathe and feeding tube in stomach, and was just released to an acute care rehab facility on June 23rd. I see a total stranger in my husband's body, and most of the time am unsure if he even knows who I am. Each day is one step forward and two backward, but I'm in it for the long haul.....he took care of me and our sons for 36 years and whatever it takes, we will be there for him. I was fortunate that my oldest son had some medical knowledge and within two days of hubby's stroke he bought me a Stroke Recovery Book and insisted that I read it .....knowing and understanding what has happened to him helps me to understand what I need to do to help him in his recovery. I know I can't do it alone, but I have faith that the good Lord won't give me anything I can't handle; and I am hoping that by joining this group I can learn and understand more of what I will be dealing with in the days ahead. I also hope that I can be a source of encouragement for others going through the same thing, even if it's only to give a ((((((((((((hug))))))))))) when needed. Hang in there people....we need each other!!

 

Sarah

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I see a total stranger in my husband's body, and most of the time am unsure if he even knows who I am. Each day is one step forward and two backward, but I'm in it for the long haul.....he took care of me and our sons for 36 years and whatever it takes, we will be there for him.

 

Sarah,

 

You hit the nail on the head with the above statement. This is the reason why so many of us caregivers jump through hoops to do the right thing. It's about honoring love and committement, no matter how tough it gets. Good luck...it's early for you and your husband might make great strides in the coming months!!

 

Jean :wub:

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Guest Lin

Sarah,

 

Just wanted to say that I had a brainstem stroke 7 years ago. At the time of my stroke my family was at first given no hope that I would even live. I have worked very hard over the years and have made remarkable recovery.

 

I now live with my sister and do volunteer work. I can walk, eat everything, etc.

 

There are many people in this network who have had brainstem strokes and who are caregivers for someone who had a brainstem stroke.

 

It is a long haul but very possible and well worth the effort.

 

Come here as often as you like. If you have questions there is probably someone who can be of help.

 

Good luck to you and your husband.

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