[HELP! Need Support]

[ladylaw]

Hello..I am really new to this site...heck, I may never even find my way back here to see if someone replies. I need HELP!! I am a stroke survivor caregiver who is trying so very hard to be what my fiance needs in the way of support. I feel like I am floundering along the way, as I have no support system of my own to fall back on. His family remains out of the picture and I am trying to pedal a hundred miles an hour trying to "keep up." I want to be everything that he wants and needs, but I am so frightened of failing miserably. The weight of all this makes me feel like I am trying to lift a Volkswagen. I realize that he is frustrated at the things that he can no longer do, but he has no one to take out his frustrations on except for me. It seems like he can flip a switch and go from angel to devil in half a heartbeat. Please...is this typical? :im stupid:

[jwatrous]

First, and most important, you are NOT STUPID -

I am a 20 year stroke survivor, having stroked at age 39 :Tantrum: , and every day is tough, but you need 3 things to survive -

[1] POSITIVE ATTITUDE

[2] SOME SORT OF PERSONAL SPIRITUALITY

[3] WILLINGNESS FOR HARD WORK

I think you must believe in yourself, before you can expect others to do the same, but good luck, and your never alone - this website is here 24/7/365 to give you all the support you need

:cheer: :welcome: , to our site and hope to hear from you

June

[Budweiser]

Welcome aboard

 

 

It's nice to meet you. Tell us abit of your self and insues that you have. We are all here to listen and to talk weith you. I'm 36 now and had a stroke by a car accident about 16 months ago. It is so scary at the first but you need to take it one day at a time. You life was turned up side down.

 

We have "chat" rooms and we get on there and talk to each others. There is for all/survivors/caregivers. Try looking in that as it can help you alot.

 

 

PM anytime you need to talk.

 

 

Bill

:welcome:

[ladylaw]

Thank you so much for responding to me...it really does make me feel like there is someone else out there who might understand. Can you tell me, when you were in the early stages following your stroke did you strike out at people? And if you did, did you MEAN to hurt them, or was it because you just had to let things "out"? I have never been one for pity parties...I have more than 30 years in federal law enforcement and I have no time for sissies or whiners and I hate that it sounds like I am becoming one. He does not think he needs any sort of psychological help with this issue..but he thinks I need to go to a shrink to be a better caregiver. I am confused.

[Budweiser]

My stroke is in my left brain in the area of speech/language.

 

After a person has a stroke, you have a behavioral (sp?) change. I get so frustrated easly and get mad at people when they talk to me. I just got separated but before my wife when to see a pyscologist. I'm going to see one next week. It took me time to feel that I do need help. They told me if I don't get help now it will get worse. Write down all the problems you/him have and talk to you doctor/neurologist. A stroke hurts all and not only the person who had the stroke.

 

Take it one day at a time.

 

 

Bill

[jriva]

Hi LawLady,

 

Welcome to Strokenet. You are no longer alone or without a support system. Take the time to learn your way around this site, read a bunch of topics, especially in this Caregiver and Family Support forum and the caregiver questions forum to start with. Another topic in the Classic Advice forum will take you a list of links to personality changes in survivors that you might find useful. Here's a direct link: http://www.strokeboard.net/index.php?showtopic=1792 Also in the Classic forum are two articles on stroke emotions. Classics is a small forum, you won't have trouble finding these.

 

Yes, it is normal for caregivers to feel out of control and like you're pedaling a 100 miles an hour---good analogy. There is a lot of experience on this board to share with you, but it helps to know more about your situation. Can you tell us a little more, like how long ago was the stroke, what's your husband's deficiences are, etc.?

 

My husband's stroke was six plus years ago and he is still wheelchair bound, no use of his right arm and has severe aphasia and appraxia.

 

 

Jean

[ladylaw]

Thanks, Jean...His stroke was June 23rd...he has problems with his right side...he spent a week or better in the hospital and about 10 days in rehab. He can drive and walk [with some difficulty]. He has a lot of trouble when he gets angry, frustrated or upset with his speech. There are a lot of things he cannot do, but that doesn't mean that he'll never be able to do them. The biggest change that has come over him is in personality. I am not sure if he blames himself for the stroke: for not being strong enough to get past it or what. Before the stroke he was a THREE pack a day smoker. I could just see doctor after after doctor turn away in almost disgust at hearing that. He stopped smoking that day in the hospital when he as admitted and, except for one slip, he has not smoked since [to the best of my knowledge]. I also understand what it is to stop smoking, although I was never THAT heavy a smoker. He has a lot on his plate. His mother had a stroke a few years ago and never even tried to help herself so is, presently, in a wheelchair because her muscles atrophied to the point that they are useless. His mother still smokes three packs a day and she is 82. She and his borhter are 1600 miles away, so there is not a prayer of help coming from that direction.

[Guest cindy1947]

Hello ladylaw, my husband stroked on Dec 24.05 and was hospitalized up until 2 weeks ago. He used to change attitude in a split second. The professionals told me that alot of times they strike out at the ones they love the most, my case me and my youngest daughter because we were the ones always there. I can totally understand why he did it though. I know with him his memory and speech are fine. Knowing he could do everything before the stroke, he had a great job,good pay and never sick in his life to be put down this way is alot to handle. When he would snap at me I took a time out outside got some fresh air and recompose myself then go back in. Usually by then his mood changed. You should probably ask his Dr for something to help him relax a bit. I can't imagine anyone recovering from a stroke not needing a little help to help there mood. It's a rough road back who wouldn't need help. We are 9 months out now and everyday there are new road blocks, it seems to never end. So you pick yourself up and gather your strength and keep on moving forward.......................good luck...........hang in there

[ladylaw]

Cindy..you can't know how much it means to me to read your response. I, too, believe he needs something to cope with stress.....He doesn't want to do it......

[bstockman]

Hi Lady law and welcome, I am 3 yrs post stroke, The first few months I slept a lot, any physical or mental exertition and I was exhausted. I was paralyzed on the left side, but thru PT I have regained most.

 

I walk with a limp ( and some days look a bit tipsy) I have some peripheral vision loss and some cognitive deficits

 

I am on a mild antidepressant, which also helps with the pain I was having and it helps me to sleep much better.

 

My husband said sometimes I was "snapping" I wasn't aware of it and didn't mean to. I sometimes talk fine and other times (especially if tired or overwhelmed) my sppech comes out kind of jery and I lose words somewhere between my brain and my tongue. So I think sometimes I foucs on getting the thought out, and my tones is off.

 

Recovering from a stroke can be quite frustraiting, you are trying to re learn thing you know you SHOULD be able to do and deal with daily life.

 

The first couple weeks I felt like someone put me down on another planet.. colors were too bright, sounds to loud.

If a sentence was too long I lost the thought ...

 

I had the attention span of a gnat. I started playing some computer games. at first I could barely finish a game of cards ...

 

Recovery is SLOW and takes a lot of repatition...

 

I am not 100%, but I have/ am learning to accept that things will not be what they were before 4/28/03.. but that it's okay. I can appreciate and love life and all it has to offer.

 

It takes time to grieve and accept what is lost. The best advice was from a person here. Don't compare yourself to "before" stroke, but compare what you can do today, to waht you could do a few days, weeks after.. and you will see how far you have come.

 

Warm wishes to you both.. this is a gravel path with pot holes.. but it is doable.

 

[jwatrous]

If you want your finance and others to have more faith in you, then you MUST regain your inner strength and show them you have confidence in yourself - Its tough, I know from being a 20 year survivor, it seems that the people around you do loose faith in you -

Its almost like the physical disabilities become so strong, they overshadow everything else, but don't give up

 

Welcome to this website

June :cheer: :welcome: :friends:

[arogers]

Ladylaw,

 

Welcome to the site. You've had some really, really good advice already. My husband suffers from emotional lability post-stroke. His takes the form of crying at the thought of anything he might (or might not)view with emotion. Maybe a butterfly - the rain - our relationship - family - friends - you name it.

 

His strokes were in 2004 and 2005. The emotional lability presented after the 2005 stroke, immediately. He has had a recent hospital stay, and while there developed some delusional thoughts so a psychiatrist was called in. Bill has other psychological issues and routinely sees a psychiatrist. In all that time, however, he had nothing prescribed for the emotionalism. He actually denied any need for anything. The psychiatrist suggested a very small dosage of Celexa. I'm telling you, it's been like a miracle drug for him. He isn't a changed person - he just has an almost normal range of emotions now.

 

I agree wholeheartedly that you must keep a list of any questions and/or behaviors your fiance is experiencing and discuss them with the doctor at your visits. Whether he WANTS something to help him isn't really the point. Lots of times we don't WANT something, but that something will help us. He is an adult, however, he's suffered a major brain injury - and as you've already read there seem to be as many complications as there are people here.

 

There are others here who have experienced this same situation - either as a survivor or a caregiver - and I dare say this is probably the most frustrating of the symptoms because you know the person inside isn't the person who is lashing out. You know it, but you somehow doubt that knowledge. We don't talk alot about medication for the caregiver in order to maintain - but I do know there are some medications out there to help us manage, too. You've probably heard the commercials for meds such as Lexapro and Cymbalta.

 

As for the smoking cessation - that alone can make for an extremely irritable environment! Bill quit smoking the day of his last stroke. This summer he has had a few cigarettes, but I've noticed a severe increase in spasticity after he's had a cigarette - In my situation I have to give orders when I'd rather not - but my order is, as it was for the time between 3/21/05 and now - no more cigarettes, unless his intent is to commit suicide very slowly. His judgment is so impaired that he doesn't even realize how bad they are for him. Your fiance is really physically struggling with the lack of nicotine, too...

 

Keep coming back, Ladylaw. All we can give is our experience - and we are happy to help you there. Take it a day at a time, as has been said, because it's too overwhelming otherwise.

 

Warmly,

 

[jriva]

LadyLaw,

 

My husband was a four to six pack a day Maroboro smoker, depending on how many hours he was up and since he worked two full time jobs for most of his adult life, that was often. He was a work-aholic using work to self-medication chronic depression. He smoked from his early teens until his late 50's so trust me when I say that your boyfriend's quitting can last but not without him probably fighting a few demons over it, especially with the stress of the stroke in his life right now. Does he blame himself for his stroke? I think most survivors do that at one point of another. My husband knows that smoking was a major contributor to his stroke to the point that he's a bit of an anti-smoking pain-in-butt at times to smokers he meets. Whether some of your boyfriend's anger has to do with self-punishing himself for his life-style that lead to his stroke or not, he will learn eventually that no one can change history. He will also need to learn that's it's not important what got him to where he's at. It's only important that he learn to deal with his anger now. If he's not on some sort of anti-depressant you might want to strongly suggest it, it's helped a lot of survivors deal in that awful first year of coming to terms with the changes that occurred.

 

My husband has major speech problems and that alone is a terribly frustrating thing to come to terms with. I've been around speech impared people for 6+ years now, and anger in the beginning months is a common thread we all share. Anger is your boyfriend's worst enemy when it comes to dealing with speech problems. Is he working with a speech therapist? If not, he sure needs to be because he needs to learn to channel that anger into hard work and speech classes ARE hard work for the survivors. In the course of 6+ years I've heard the phrase, "it's the hardest work you'll ever do" many times in reference to my husband's speech therapy sessions. If your boyfriend doesn't have insurance coverage for speech, look around for a college with a language pathology program you can get him into for therapy with student ST's. Hopefully he's not the type who would rather wallow in self-pity than to work hard at getting back his self-repect and language---be it verbal language or something else.

 

And for yourself, your lack of local support can be over-come, especially now that you've found moral support here on this website. Up until this past summer, I could have counted the number of hours my husband and I had been apart on one hand since his stroke. You are not alone anymore. You have all of us.

 

Jean

 

P.S. I consider Celexa to be a miracle drug, too, to help with mood swings and depression.

[ladylaw]

Jean.....you cannot possibly KNOW how much your words improve my outlook. This site is probably a Godsend for many people. I can tell you from extensive research in the Dallas/Fort Worth area, that finding an actual physical support group is virtually impossible. I even e-mailed the local hospital volunteering to help START a support group for stroke survivors and their caregivers. To date, I have received no response and that to me is depressing.

 

 

[arogers]

Ladylaw,

 

How about contacting the stroke unit your fiance was on at the hospital? A social worker there? Rehab center? Gosh, a city the size of Dallas/Ft. Worth certainly has a need for a stroke support group - it's truly amazing that when someone volunteers there is no response. With my personality I'd probably even make a personal visit to the hospital stroke unit!!!

 

Good luck to you!!

[lisas]

:welcome: LADYLAW,

 

I CAN UNDERSTAND WHAT YOU'RE GOING THROUGH. I TOO, AM A CAREGIVER TO MY 22 YEAR OLD DAUGHTER RACHEL. SHE HAD A MASSIVE STROKE ON 2/17/06. SHE COULDN'T DO ANYTHING IN THE BEGINNING:

 

1. COULDN'T TALK OR SWALLOW. :Tantrum:

 

2.COULDN'T ROLL OVER.

 

3.COULDN'T MOVE RIGHT SIDE. :Tantrum:

 

4.WAS TOTALLY INCONTINENT.

 

LITTLE BY LITTLE, DAY BY DAY, SHE STARTED TO IMPROVE:

 

1. CAN USE TOILET, NO INCONTINENCE. :cheer:

 

2.CAN SPEAK ENOUGH WORDS THAT WE RECOGNIZE HER NEEDS. :Clap-Hands:

 

3. IS WALKING WITH A QUAD CANE SHORT DISTANCE, AND PUSHING HERSELF IN HER WHEELCHAIR. :big_grin:

 

4.ATTENDING OUTPATIENT THERAPY SESSIONS 3 TIMES WEEKLY:OT. PT. AND SPEECH :cheer:

 

SHE AT TIMES IS VERY UPSET WITH US AND HERSELF. THEN OTHER TIMES: MOST OF THE TIME, VERY THANKFUL TO BE ALIVE. MY HUSBAND & I STRUGGLE WITH THIS NEW ADJUSTMENT EVERYDAY. BUT I WILL SAY THAT TIME HAS MADE SUCH A DIFFERENCE. WE HAVE MORE OF A SCHEDULE. IN THE BEGINNING, IT'S HARD TO FIT EVERYTHING IN:SO MUCH TO BE DONE. :juggle:

 

THE EMOTIONS YOU AND YOUR FIANCE ARE FEELING ARE QUITE NORMAL. WE HAVE GONE TO SOME STROKE SUPPORT GROUP MEETINGS. AT TIMES, THEY HELPED RACHEL, AND OTHER TIMES, NOT SO MUCH.

 

I'M GLAD YOU FOUND THE SUPPORT GROUP RIGHT HERE. IT'S BEEN THE BEST PLACE FOR ME TO COME. :Clap-Hands: THERE'S SO MUCH INFORMATION AND CARING PEOPLE. YOU CAN COME AND READ AND WHEN YOU FEEL UP TO IT, THERE ARE CHAT TIMES LISTED ABOVE UNDER COMMUNITY LINKS. THOSE CHATS HELP ALOT, AND VERY CONVENIENT. :chat:

 

MY DAUGHTER ALSO SMOKED:PRE-STROKE, ABOUT A 1/2 PACK A DAY. SHE ALSO TOOK BIRTH CONTROL, WHICH IS A NO/NO TO BOTH AT THE SAME TIME. FOR SOME REASON THOUGH, WE AS PEOPLE THINK WERE INVINSIBLE. :bop: SUCH IS LIFE!!.

 

YOU ARE :welcome: TO PM ME ANYTIME. HANG IN THERE. I AM PRAYING FOR YOU. DO YOU HAVE A CHURCH SUPPORT GROUP? GOOD FRIEND? MAYBE YOU CAN GET OUT TO GET SOME YOU TIME, EVEN AN HOUR HELPS. :hug: COME BACK AND VISIT OFTEN. :friends:

[TNstroke61306]

Hi, Ladylaw,

 

I too am new to this site and have found how much help I already have gotten since I joined. I thought I was the only one out there that was overwhelmed and alone. My husband, George, had his stroke June 13, 06 and is presently in a skilled nursing facility. Just keep logging onto this site and reading everything you can. It is so helpful and everyone is so nice and friendly and warm. My dog and I visit George everyday, everyone in the SNF knows "Rocky" and me but our days are numbered there because of insurance. I am just now trying to find out what I can do NEXT for his care. He is still on a feeding tube but is eating pureed foods, cannot walk, can say a few words and gets angry at me a lot when I try to help him, but he also still has a wonderful sense of humor and laughs all the time too. One thing I have become is VERY diligent with the social worker at the snf and the therapists. I ask questions constantly and am on my toes, but there still is so much to learn. I will keep you in my prayers.

 

Wendie (TNstroke61306)

[ladylaw]

Oh my goodness...so much thanks to ALL of you!! You have added and are continuing to add everyday something good to my life. I will continue to try and follow up on locating--or even establishing, if that is what it takes --a stroke support group here in this area. God Bless All of You! You have no idea what angels you are!!

:Clap-Hands: :Clap-Hands: :Clap-Hands: :Clap-Hands:

[jwatrous]

First, you are NOT stupid, and trying to do a balance act, requires lots of skills. which you seem to be able to do, but please try to remember that you can do only so much as you have to take care of you, too -

We all have moods, and his turning from angel to devil, in a heartbeat is not planned, its part of being moody!

GOOD LUCK, GOD BLESS & hope to hear from you again :chat:

June

[JoeAnnTX]

Hi Jean:

 

I live in the Dallas/Fort Worth area and my Dad is a recent Stroke victim. He was being treated at HealthSouth Rehab Facilities here in Plano and I am sure they have what you may be looking for. It was a great facility.... check with them.

[ladylaw]

Thanks for the respinse....Ken was at HealthSouth and also an outpatient rehab patient...we contacted them about a support group for stroke survivors and their caregivers and were told "it was a nice idea" but they neither had no knew of any such group. :Tantrum: :Tantrum:

[jwatrous]

First, you are NOT stupid & you are doing your best - how can you be faulted for that

GOOD LUCK

June :cheer: