mynorthstarmaxwell

Good Afternoon everyone and thanks for the feedbacks....I am doing much better today. Some days are much better than others. And SandyCaregiver, I think you are right about him ready to do things for himself, because from what I see at his ST sessions, its boring him and he's not feeling like its helping him much. He acutally does better with conversating with me. I do know it will be a long journey for both him and I, and from what my oberservations of his progress....he's doing WAY better. So, baby-steps... He does dress himself, able to put his shoes and leg brace on, take a shower and helps out with loading the dirty dishes in and putting away clean. And when I do the laundry, he helps with the socks and putting his laundry away...so I know he's trying. I just needed a venting session...hope everyone is having a nice weekend

I really dont know what to feel at the moment....I've worked so hard to get things right for charles once he moves down here with me. I've lined all the necessary Doc's for him and searched for PT,OT and ST for him. It was always an ordeal to get him to any appointments, always finding myself arguing with him, since he is stubborn and we are always running late for his appointments. He no longer has PT because he doesnt like any of therapist that has worked with him, and wont do any of the exercises they've asked him to do. He had ST two days a week, but we have cut it down to once a week because he tells me ST "sucks". He also doesnt do any ST homework and when I try to get him to do it, he gets frustrated and angry with me. He's now only seeing OT once a week for his right arm. He' so focused on getting movement back on his right arm but dont want to go more than once a week.!! Somedays, I get so angry because I rush home from work to get him to his therapy and he acts up..so I always end up making excuses and cancelling his appointments. I just want what's best for him but he's not the driven person I used to know! I try to do things to get him motivated to wanna write or spell but he refuses. All he wants is to do his Lego's, listen to music and watch ESPN. Its making me want to give up hope...I feel exhausted because he's not driven to want to get better. Its the same routine..he stays up til 2am, sleeps til 12:30pm or later. I get off at work 3:15pm, rush home to him and its constant catering to his needs til I go to bed around 10 or 10:30pm. Im living for the both of us, havent seen many of my friends in like forever. I mostly txt them. My family are all in CA, I do miss them very much. His parents are up in PA, they never ask how Im doing? or if I need anything? they keep making excuses when he ask them to come down and visit us in MD. my heart aches...I feel like crying, screaming and throw in the white towel. I just turned 40, been with him for 16yrs, still not married, no kids, no home. I just wish he would say to me "amy, I want to spend the rest of my life with you, lets get married, have kids and buy a home" ...but til this day, still havent heard those words. We are engaged but no set date yet, he's worried if we get married his disablitly check will be low, I figured only reason he would know that is his mom had said something to him. To me, its not about the money, its the LOVE i have for him. Its 5pm...I'm going for a run to help with my stress

so this is the second day that charles had a seizure...both times I was at work so I dont know how long they lasted. Today, he called me at work telling me that he felt it coming on,from what I could get out of him. So I rushed home to him. There's not a day I go without worrying about him. I did call his primary and neuro. He is on anti-seizure pills, started w/ 250mg but today taking the full 500mg. The neuro did informed that seizures were a common thing after a stroke...has anyone experienced it? anything that can be expected after a stroke? Charles is doing fine now, but it takes alot of energy out of him. He's up and walking around and had some yogart. I always fear that he may have fallen and hit his head...I feel like my blood pressure has risen and my heart out of my chest when I got his call. IM doing better as well, but it scared me.

yes I mos def....Im really excited to get him started

So I came across a new PT that just opened up about 10mins from where we live and I made a stop in...Im so glad I did. They have a aquatic therapy that has a build in treadmill..! pretty amazing. So I made an appointment for charles, in hopes that it will help him to get strength back in his right leg. His appt is on Sept 4th, I'll keep everyone posted on how he's doing.

@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.

@Achandra...how long has it been since your stroke? which side of your body did it effect and how are you doing now?

@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.

@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.

Hi fking....sorry, not sure what happened? ok, looking forward to hearing from you

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.