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adapting to a new life...


mynorthstarmaxwell

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Hello, my name is Amy Moua, Im new to this site. My fiance had a stroke june 7, 2012...this date will be forever remembered. My fiance was 37yr when he had the stroke. I remember a few days before his stroke, he had a root canal on #19 and was complaining how sore it felt, not thinking it could had something to do with leading to a stroke, I told him to go back and have the tooth looked at when he got the chance. On June 7th, we said good-bye, I gave him a kiss before he left to work and I was going to take my boards that same morning.

The boards was a 6hr exam, once i was inside I couldnt take my phone with me. So when I was done with the first 4hrs, I went to check my phone. I had tons of missed calls from his work and knew something had happened. When I did call his co-worker, I was told that he had a stroke! I immediately started bawling and really didnt know what to do....its difficult to relive this, makes me tear up everytime.

I did make it to the ICU and have been by his side through it all. He had a blocked left carotid artery. Til this day, he still has no movement on his right arm and it really concerns him. He's walking with a 4 point cane, he can't really flex his right foot up and is wearing a brace. He is seeing ST,OT at the moment. He hasnt been happy with the PT and refuses to go back.

I really dont have the family support that I was hoping to get from his side of the family. His parents were nasty to me, critized and watched everything that I did, just so they can talk about all that Im not doing right. I've been told by his mother that Im part to blame for his stroke becuase of all the stress he's had to deal with, finacially supporting me through Dental Hygiene school and how Im non-existant to her. SO, I've been his primary care-taker since he's moved back home with me feb. 2013, which was another ordeal in itself.

This has really been a challenge and emotional..this is my first experience with stroke and really didnt know what to do or who to turn too. He's very set in his ways which makes it difficult to talk him into doing anything no matter how much I try to explain the benefits of doing it and his emotions are to the extreme, whether he is feeling happy, sad, anger, joy or laughter. I just never know what tomorrow will be like....I pretty much have stop living my life to fulfill his. I have endured alot through this whole thing, and have stood by his side for 16yrs now. I have seen him at his worst to what he's progress to this day and still love him as much as the first day we met.

I needed an outlet to explain my story to those that have gone through or experienced what I had, so that I wont feel like Im going insane.

 

sincerely,

 

Amy

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Hi Amy, welcome to a wonderful site. Here you find people that dont judge you, let you let off steam and not feel insane.

It is rough, I haded my stroke 2011, and my journey had been twist, and turns. It is tough for you and your fiance, Iam still shouting at my husband, that he does not understand. You are both going though a diffcult time. He is hurting and so are you. Everyone is scared, even his Parents, so they blame you. Remember, humans have to blame some one. It is no one fault, that took me at least a year after the stroke to have that view point!

Please keep on blogging, they are chat rooms, which you share what is going on in your life, and ask questions, so you dont feel lonely.

Yvonne

I wish you and your fiance all the best

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Hi Amy, my hubby had a stroke on Feb 29, 2012. I remember in the beginning that I read a story where the doctor told the wife, "you are going to find out what the meaning of slow is". It is very slow. It is like a dot to dot picture, each tiny dot, so seemingly nothing, but when it joins to another dot, then another, over time, something begins to show up in an improvement. But, you are right, it doesn't happen without lots of therapy, there is no sitting and waiting for it to improve. It's grueling and necessary.

 

My husband was 60 when he had his stroke, but a young sixty - long distance bike rider, marathon runner, hiker, etc. I would never have thought this was possible to happen to him. But I've found out that strokes are like car accidents, they can happen to anyone. Sure if you drive drunk you're personal risk of being in an accident go way up... but, people who don't ever drink have accidents everyday, too.

 

Please elaborate on what PT was like and why he doesn't think he should go back.

 

You are so right about finding those going thru the same thing. If I thought, it was just us going thru this, why us?! I'd go crazy. But I see all the other people going thru the same thing, and realize it is like broken legs, it's going on all around us, but we don't notice how many people have a cast on their leg till we get one ourselves.

 

It sounds like Bob & your guy might have a lot of the same things, except Bob also lost all vision past his nose to the right, and has aphasia, and sequencing problems, must be given 1 line commands, and sometimes misses those. Don't let that scare you. I am blessed to have my husband with me, and we are happy.

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hi Amy :

 

welcome to best online stroke support group & therapeutic world of blogging. Stroke affects whole family, and every one reacts differently. in the beginning every one goes through why me & mixed emotions, some try to find others to blame. every one is different & all have different coping mechanism. I know for me when I stroked at age 34 I depended heavily on inner strength of my husband & family till I found my own inner strength again. just hang in there, it does become easier.

 

Asha

 

 

 

 

Asha

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thanks everyone for your supportive comments....it really does make me feel better after reading everyone's stories and the feed-back I've gotten so far.

my fiance's name is Charles :), he loves putting Lego's together which he's done most on his own with soley his left arm. He can understand most of what I say to him but just have a hard time recalling words or saying what he wants. He does have a hard time with reading the aphabet letters and numbers. Since he likes Lego's so much, I came across a Lego calender, where he would have to break down the lego and build the calender up again with each month....I've been reading and heard that it takes 6months for the brain to heal and the thing is, Charles had to go back in in Sept of 2012 for a second surgery, so that kinda set things back for him, as far as healing goes.

But we remain positive...some days are better than others.

Its great to hear him say my name again...he couldnt remember my name for the longest time. while he was rehabing with his parents, they didnt want him to ever mention my name or use it, as if I never existed in his life...it was hard to deal with them.

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well my dear -- you are the BEST --- the absolute BEST.... many people out of the "stroke" world have no idea everything you are doing ... we do... the family issue --- no suprise its almost universal amongst the survivors families - they all pull away ... some say its because they dont know how to help, dont want to interfere, ,or just criticize ...(from afar) ------------and i am one to give a lot less benefit of the doubt... I wish my hubbies family didnt know better - they just dont care.. it is that simple . and by critisizing you , than to their friends that can look like they give a darn . but they don't they are secretly happy to do nothing...- Yes folks nancy is a little bitter today.. no reason just am.. but we all know the facts here on stroke net--- only rare special people in your life will stay - all else fall away... However, you know who and what true friends and family you have.. so it is like having a lie detector.... One day at a time --- the path is long and hard. looks like there is no reason but from a spiritual point of view ( the only way i can get through this) i figure we are being tried by "fire" and I am amazed at all of us her on stroke net... YOU and WE are amazing - through it all we are true , loyal and loving .. We stay for reasons no one understands - yes i have been told just put him in a nursing home, I just do what i would want and expect to be done for me ( mabey a little much ) but still i guess we do the very best we can.. and that is all any of us can hope for or do.... Hang in there..... you are not alone, there are lots of us caregivers here... giving each other the boost in the form of pep talks and practical advice.. You can use what works for you... SO again GOOD JOB -- at the very hardest job anyone will ever have. !!!!!!

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One thing I always mention to others is that we were very fotunate that he ended up on a rehab where the therapists came into his room smiling brightly and greeting him with joy each day. Otherwise, we might have been so struck down by the turn of events that we might have felt our lives were over. But no, we learned to look forward to each day and the 'olympic' type training he has done. We greet each day as a day that we didn't have coming, and yet, we got it! and we will continue to work it!

 

It sounds like he has aphasia also, one thing Bob did, and I had to work with him to do it, because he forgot all his computer skills. And it wasn't just a matter of showing him again, I needed to sit with him, because it took months for him to remember to click the button on the pad on the laptop, even though I put a big red dot on it, like you label prices with. Anyway, I am always searching for ANYTHING for him to do that will stimulate his brain. When he was WAY DOWN the hatch, I got colored dominoes and we played the colors, end to end. Anything to make his brain work. This is one of the sites that he uses to help re-learn language - note there is a drop down box at the top left where you can choose the category you want to practice:

 

http://www.englishspeak.com/english-phrases.cfm?newCategoryShowed=10&sortBy=28

 

I also looked for things that he loved his whole life that he could do again, even with one hand, and remembered we had some of son's old lincoln logs in storage, and ordered more from ebay. He has spent many happy hours redoing his buildings:

 

SANY1592.jpg?t=1377466669

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@nancy....thanks nancy, i appreciate you expressing your true emotions because like you say people outside of "stroke" have no idea what it feels like or all that I have to take on. I not only work a F/T job but charles is my other F/T job once i do come home. I know its hard on him to feel so helpless towards me and the LONG hours I put in....I do it cause for my love for him and to let him know that I'm here til the end, that life is worth looking forward to each day. I have days when I cry to myself and ask "why does our live have to be so difficult all the time"...I know everyone's has a story to where they are now. And I am very grateful to have found this support online group, its what I need at this moment and probably even after Charles gets better.

Charles is very into music, so he listens to it 24/7, he loves ESPN and his phillies...we just recently went to a phillies game, it was a 7pm game, drove up and back. It was so well worth it, he was very emotional about it and while expressing himself, he would cry, which made me cry! I just wipe away both our tears and try to cheer him right up again.

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@sandycaregiver....thanks for sharing the photo, that's the sweetest thing! Charles loves Lego's and would spend hours putting it together while listening to jazz music in the background. And Bob is very fortunate to have you by his side! keep up the good work! I will check out the sites you have given me.

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@englishlady....thank you, I will be updating on here. Already it has help me to feel that it wasnt my fault for his stroke, I know people say or react differently when something traumatic as this has happened to someone dear to them but I feel like I have alot of sorrow and anger towards his parents. They have said some really nasty and unnecessary things towards me and its always on the back of my mind, no matter how much I tell myself or my friends that i had nothing to do with his stroke, it still hurts.

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Bob had an Ipod that he wore while running or biking, and I really didn't know what to do with it. It was quite a while before I came across it. He couldn't remember how it worked. I went to Walmart and found one of those little speaker boxes that you can plug it on top of an he can now listen to his music (golden oldies) while in 'his' room.

 

We just finished selling the old house (a horror story of work for me) so a lot of stuff is stuck in his room right now. He spends a lot of time in our screen porch in the back, but will have to get that cleaned out before cold weather. After all this time, I finally can feel a little of myself coming back (I wrote a blog on it called Caregiver Rehab). I have gotten out MY music and find time to listen to it again.

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Amy: welcome. Going to start with the party line first. If Charles is not on an antidepressant, it is time to consider one.

 

I can't imagine having to be a caregiver and work full time. My Bruce is also a totally-occluded left carotid (a couple of them).

 

I do agree with Sandy, because you are forced to work. Set up a table of legos and a table of Lincoln logs. Load up the CD changer if you have one and put it on shuffle. Let him sing his heart out while you are gone.

 

Obviously all of us would like to see Charles back in therapy. But you can not force him and certainly are just too exhausted to battle all the time.

 

Use the resources that you have available. If Charles' co-workers are onboard, have them take him out for dinner on occasion. Friends can also help, but I think all of us here would advise you to learn to reach out. Stroke confuses people - especially at your age. One of Bruce's friends would call when he was going grocery shopping and ask what we needed. Another friend made us a casserole of some type. My neighbors are great as far as last minute errands, they fit them in around their work schedules. And while his parents don't care for you, he is still their son. I would ask that they at least take him to lunch every week. They don't have to interact with you - you are at work.

 

Those times will be rare, but you must take advantage of them. You rest, enjoy a hot bath, good book, down time. It is not the time to vaccum or organize. I had a caregiver take Bruce to the pool every Saturday - about 4 hours. My deal with myself was chores for two hours, two hours for me.

 

This is such a long and difficult journey. But you are with the love of your life, have time to share and just live and when you finally get to bed at night, please just try to focus on even one positive outcome during the day. This is a great site. Come as often as you can, share and offer please what is working for you and do ask away. Lots of great help here. Again, Welcome aboard. Debbie, caregiver to husband Bruce, Stroke March 2009

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Hi Amy, welcome to our Blog Community, you have already heard from a few of our members and know that this is a real supportive support site. There is a lot of experience here and coupled with a willingness to share it means you can hear answers from many different perspectives.

 

I am Sue, Blog Moderator, a volunteer now as Ray, my husband who I looked after for 13 years, died last year. I've stayed on here as a Chat Host and Blog Moderator as my way of saying thank you for all others have done for me. Hope to have you join us in chat one Tuesday night.

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