papa68 Posted June 4, 2006 Share Posted June 4, 2006 Hi everyone i am new to this site. My papa (grandpa) had a large ischemic stroke on the left side of his brain. He was hospitalized may 10th. That morning my granny heard a noice and went to his bed room to find him on the floor trying to get himself up. He could not talk nor had any strength to pull himself off the floor. He was taken to the hospital around 4 that morning. After he was sent to the ICU he was given oxygen but that was slowly not working. They ended up intibating him that day because he could not breath. The doctors told us that he was in bad shape and that things werent looking good for him because the stroke was so large. After a while they started to slowly take him of the vent. He was then given a trach. He started do well on this and they were able to take the trach out. He was not able to eat and was given a peg tube to feed him through his stomach. Also the first day his kindeys started to fail so they put him on new medication that helped alot and ended up getting them back to normal shortly. While my papa was at the hospital we seen signs of communication. We had very negative medical staff that said it was nothing puposeful. However, we did not beleive them. When people entered the room he would stick out his hand and reach for theirs. he would wink at us quickly. Occasionally he smiled at funny things my family did or said. He always was checking out his room, he would close his left eye to see how good his right eye was doing. (he was paralyzed on the right side) one night he even started tapping his foot to the music we were playing for him. He would sometimes wake up if we mentioned his dog. Sometimes we could get a sort of "no" or "yes" out of him. All of this was purposeful for us, he was fighting and so were we. Next came when he couldnt stay there because he couldnt participate in 3 hours of therapy. He had to be taken to a nursing home that was only 45 minutes of therapy a day. The day befor he left he was given a test by the speech therapist. He was to eat a small bite of chocoalet pudding to see if it was going down the right way and not into his lungs. During this he fed himself three times and the speech therapist seemed to think it was going to right way. His hospital stay was three weeks long. They next day he was transfered to a nursing home. Were he was not watched and he needed not to be. He fell out of his bed twice was never x-rayed and was having a horrible time breathing. After the second day we took him back to the hospital. (yesterday) where we have found he has had a heart attack and his kindeys arent doing good again. He is back on the vent and the whole family is discouraged i was wondering if anyone had similar experiences and if you could share them so i could print them off for my family to read. Thank you, and i am sorry this story is so long. Mylee Link to comment Share on other sites More sharing options...
jriva Posted June 4, 2006 Share Posted June 4, 2006 Hi Mylee, I don't know how old your grandfather is but when my husband had his massive stroke he was 58 and there are many parallels in your story to ours. We were told that his attempts to comunicate meant nothing but animal instincts but family knew differently. My husband could smile at insider jokes and we could read his emotions in his eyes. We were told that he'd "be nothing more than a vegetable for the rest of his life." After a month in the hospital to stablize his many medical complications which included swallowing problems he was sent to a nursing home because he was not strong enough to do any kind of rehab and because they didn't think he was "in there" to understand them. I badged the doctors to find out exactly what he'd have to be able to do to be accepted in a rehab hospital and then I set up a family tag time to go to the nursing home every day to add an extra two hours of home-grown therapies to his schedule. After a month of doing this, I got another rehab specialist out to exam my husband and he saw what family saw...that there was a man inside the silent shell who deserved a chance. He was moved to a rehab department in a small hospital for a month. Then we did 5 months of intense out patient therapies 4-5 days a week. The first few years post stroke were not easy but it was worth the effect we put into it. I won't lie to you and tell you that my husband is up walking and talking, he's not. But his stroke was six years ago and we are now on the go all the time---wheelchair and all. He lives at home and is well-adjusted, friendly, good natured and has all his IQ and memories in tact. We still go to speech therapies because getting out language is still an on going project, but one that gives us daily laughter. The botton line in my sharing my story is that you can NOT believe everything the medical community tells you. Stroke recovery depends on many factors including the committement of family support the survivor has, the willingness of the survivor to work hard at therapies and the amount of rehab time you can badger out of the insurance companies. Families need to become vocal advocates early on and when they can't get more therapies, figure out your own based on what you've seen being done while you could get them. For us, we set a time frame of three months that we were committed to giving my husband a change with the family tag team to turn things around before we were willing to give up on him....but it only took a month to get him to where he needed to be to get accepted back into a rehab program. Good luck to you and your whole family. Try to get your family proactive and see where it leads. If someone can be with him during therapy times, this is a hugh help. Jean Link to comment Share on other sites More sharing options...
mary7 Posted June 4, 2006 Share Posted June 4, 2006 I have not had an experience like yours. So sorry for the treatment your grandfather has gotten. It is so important for someone to advocate for a paitien. Sounds like he really needs that. Good luck and You all will be in my prayers Link to comment Share on other sites More sharing options...
fking Posted June 4, 2006 Share Posted June 4, 2006 Mylee, I welcome you as caregiver/family member to your Papa. I realize there are other family members too. You didn't mention his age, I'm a great grand Pa at 65. I certainly wish him recovery and maybe some therapy as soon as possible to deal with the paralysis. Easier said than done but try not to get discouraged, hopefully some one here can offer words of wisdom along the lines of his stroke that can/will encourage you and family members about his progress. While it's not easy with a heart condition and kidney failure there is still progress to be made with his stroke condition. It's early in stroke terms but never give up. Family support does mean so much, even mention of the dog sparks him along. I wish I had more info to offer you but my stroke was different and affected my left side. :please: Log in often and post in other Forums to provide any additional info about Papa for members here to advise you in his case. Link to comment Share on other sites More sharing options...
pprovost Posted June 4, 2006 Share Posted June 4, 2006 Dear Mylee, nothing is more demoralizing that pessimistic health proffessionals. Myexperience was that they felt the need to protect theselves more than proming health in the patient. When I was in ICU my meds made me so giddy that nobody could keep up with my one-liners. Everything seemed hilarious to me at the time. When I rallied, the doctors were very quick to remind my family that I had a long ways to go and that I was not out of the woods. I was not spared any time in denial because one ER doctor made it very clear that my stroke was very severe and that I would have a long period of rehab. I am not ungrateful but the attitude was not helpful to my family. Many doctors are very academic and statistic oriented and become uncomfortable when our recovery does not coincide with the statistical informationon what that they base their treatment. I agree that having a family member present during therapy is a good idea. My sister went to OT with me for a few sessions and by doing so she gained understanding in the damage done by my stroke. It was fun for me too because my self-pride would cause me to perform my best in the presence of family. I will never forget my husband's face the day he saw me walk for the first time. The only advice I can give you is to educate yourself as much as you can about stroke ( the internet has lots of information or check the liks we reccommend on the web site Giving your loved one unconditional love is extremely poweful as well as badly needed because a stroke survivor needs everyone in his corner. You sound like just the person that fills the bill for your Papa. kindest regards, Pat :thumbs up: Link to comment Share on other sites More sharing options...
papa68 Posted June 5, 2006 Author Share Posted June 5, 2006 thank you all so much for your support and stories. We just found out that he had the heart attack because he went into septick shock after having an infection in the nursing home. The heart attack was not large and he seems to be stable now. He is still on the vent but hopefully we will see inprovement soon! Thanks again! ohh i also forgot to write he is 68 and will be 69 in october. thanks again for the reply's. we need some kind of enouragement after his visit to the nursing home! Link to comment Share on other sites More sharing options...
caringfor5 Posted June 7, 2006 Share Posted June 7, 2006 Mylee, Keep pressing forward and being an advocate for your Grandpa. You'll find that you and your family with the help of the therapists is your Grandpa's best chance for improvement. I hope and pray that he will be strong enough that he can go to a in patient rehab and out of the nursing home and can get strong enough that you can bring him home and he can go to out patient therapy. My fiance was in hospitals for over five months before he came home and all of it to me was like a nightmare. and we were told also that the responses he was making were non purposeful, but after a couple of months he was starting to talk. he was in the first hospital for nearly two months, he was transferred to a long term care facility still on a vent and feeding tube but there he started to communicate and after a couple of months there he was off the vent, talking and was making enough progress to be transferred to an acute rehab were he spent another month we were then told that he was not making enough progress to stay there and recommended that we put him in a nursing home. My fiance is only 35 years old and I would not let them do that to him so he is home with me and going to out patient therapy a couple times a week and he is making alot of progress. He's not a hundred percent, maybe not even 50 percent but he's come a long way from where they said he would be and I'm proud to be a part in his getting better. There are a lot of things he can't do but there are many things he can do and when your told that someone will never be able to do anything for themselves every little thing becomes a great accomplishment. I appreciate every little thing he is able to do. Your Grandpa will improve, keep fighting for him, its alot of work but its well worth it. Tina Link to comment Share on other sites More sharing options...
papa68 Posted June 7, 2006 Author Share Posted June 7, 2006 Thank you tina! and i am sorry to hear about your fiance, i am glad he is improving though! last night they took my papa off the vent and hes doing great. he kept waving down the nurse and opening his mouth because he wanted it out =) he shakes his head yes and no to all of our questions! he seems better then when he left the hospital the first time. we also think he might be able to say some words because before the put him back on the vent for the second time he told us yes no and okay sometimes and one time he even got mad and said i dont want! haha so that was a great thing! thanks for your support! =) and good luck to your finance.... keep me updated! mylee =) Link to comment Share on other sites More sharing options...
papa68 Posted June 7, 2006 Author Share Posted June 7, 2006 hey for everyone who has looked or read this post i was wondering about speech! my papa seems to be doing alot better and now he is trying to talk. however the only thing we can make out right now are yes no and okay. he tries to talk in long sentances but when we can understand him he gets angry and shakes his head. I was wondering if anyone else has had similar experience and if they ever got their speech back. thanks for all your support and advice! mylee =) Link to comment Share on other sites More sharing options...
slmstrokeangel Posted June 8, 2006 Share Posted June 8, 2006 I haven't got my speech 100% but it gets better all the time. Link to comment Share on other sites More sharing options...
caringfor5 Posted June 8, 2006 Share Posted June 8, 2006 Hi Mylee, If your Grandpa is already saying one or two words its quite possible that more will come. Mike, my fiance, started out by saying only one or two words and only when prompted. I would encourage him to try to say words by asking him questions that only required one word answers but not just the normal yes or no and it really helped him to build his vocabulary back up. For instance I would ask him questions like what kind of car do we have, what city do we live in, whats your favorite color....not only did this help get him talking but it also was a way for me to test his long term memory which I was very happy to find out that that was pretty well intact. I feel that it was always easier for Mike to talk and respond to questions if I kept distractions low and I always insisted in the beginning that only one person speak to him at a time and reminded people that were visiting to not fire off questions left and right and expect an answer but to ask the question and then give him time to take in what was said and answer before they repeated themselves. I also remind them to give him time before trying to answer for him. His speech is so much better now but it took a long time. He still stutters sometimes when he's tired and sometimes he'll pause for a minute because he's trying to find the word but he is doing wonderful compared to where we started and keep in mind he wasn't even able to speak until about two months after his strokes. I hope I gave you some advice that will help to get your Grandpa talking and like I said if he's saying a few words already thats a start... Good Luck Tina Link to comment Share on other sites More sharing options...
momx3 Posted June 8, 2006 Share Posted June 8, 2006 Hi Mylee welcome to you. My speech was, to me, really bad at the beginning. I sounded like I'd had one too many! :cocktail: I remember crying while I was reading a book to my 3 year old because I couldn't speek clearly. Over time my speech has come back. I can still notice a difference when I'm really tired but I don't think a stranger would notice. Practice practice practice. Continue to engage him in conversation, at his pace. I couldn't type right after my stroke because my left hand wouldn't follow directions :throw: But I do ok now, some days are better. I type alot for my job so I just pushed on until it came back. I think the same holds true with speech. Good luck My thoughts and prayers are with your family. Link to comment Share on other sites More sharing options...
chrisratty Posted June 24, 2006 Share Posted June 24, 2006 Yes I echo what everyone else has said...don't give up. My husband who is only 60yrs young, had a severe stroke 7mths ago. In Febuary we were told that he would never walk again..more or less saying things were hopeless...to cut a long story short...he is now walking with a Zimmer frame...not far...but it's a start. He is clear headed most of the time again & can't wait to get home. Link to comment Share on other sites More sharing options...
papa68 Posted July 23, 2006 Author Share Posted July 23, 2006 Hello everyone i am back and I have some more questions.... since my last post my papa had gotten extremely better he went to a different hospital call specialy select and they slowly weaned him off the vent they put the trach back in for three weeks. He was very sleepy most of these weeks because of medication they had him on. We asked for this medication to be stopped because he was not getting and physical therapy. Once they stopped the medication he started talking (Trying to talk) we usually dont know what he is saying. His facial movement seem to get better all the time, smiling puckering lips, opening his mouth and even mouthing words to his favorite songs. However they were moving him to a nursing home bcause he was not doing three hours of physical therapy. On the 14th of july they had done a bronch that said tehre was no blockaged and is O2 saturation was 98%. Then 4 days later he went into respitory distress and was back in the ICU and on the vent. Dr said he breaths well and the problem may be weakness with throat and vocal cords... he may have to have the trach permenately. We are praying that his throat muscles will get stronger and the trach wont be permanent. All in all my question is has anyone had experience like this? please let me know if you have thanks again for all your support and help!!!! :Clap-Hands: mylee Link to comment Share on other sites More sharing options...
scammarata Posted July 23, 2006 Share Posted July 23, 2006 My Dad had his stroke a year ago. Everyone but me felt "he wasn't in there" to work with. I could see he was and luckily the speech therapist did also. I met with her and she would leave supplemental things I could do with my Dad each day to help him gain his speech back. Some of the things were as simple as smiling and sticking his tongue out. He worked very hard each day with me. I created flash cards and did everything possible to make it fun while working on the speech. The k and g sounds seemed to be the most difficult. It seemed to help letting him look in a mirror while doing the exercises. Repeating words three times in a row helps strengthen the muscle more than just repeating a word once. Medications definitely affected his ability to speak. If he was tired or lethargic he could not control the muscles in the throat as well and his speech was more slurred. I tried to arrange his speech sessions first thing in the morning when he was more rested and could benefit the most from her help. I agree with Jean above, we are the ones that know our family members the best. I am not saying the doctors do not have knowledge and expertise but how can they possibly know the personal side of the patient like their drive and desire without knowing them for a lifetime like we do. Don't give up. My Dad's speech still had good days and bad days, but I had some of the best conversations with him this last year after his stroke that made it all worthwhile. God Bless Sandy Link to comment Share on other sites More sharing options...
lisas Posted July 24, 2006 Share Posted July 24, 2006 Papa68 We are praying for you. I don't know anything about the trach, but am hopeful a solution will be coming soon. Hang in there :friends: Link to comment Share on other sites More sharing options...
Guest MelBaker Posted July 24, 2006 Share Posted July 24, 2006 Hi Mylee - and :welcome: although I wish we were meeting under better circumstances. I did have speech problems at first, although it did come back fairly soon - I hope this is the case for your papa as well. One suggestion I have for you is what thy did for me until they could understand me - they drew the alphabet on a dry-erase board(my speech therapist went and bought one for $6 at Wal-mart) and I could point at the letters to form the words I wanted......I don't know how good his unaffected side is - if they feel like he might be able to type - see if you can borrow someone's laptop pc and try to see if he can type messages in one of the word processing programs available (Word/WordPerfect). Another idea is one they used with me too - get the old fashioned letter blocks and see if he can make words with them.....this is good for OT as well :cheer: I am not a speech therapist - anf These are just ideas :2cents: and hopefully you may have access to some of them - this may help him and you by bridging the gap of communication. I would see if you can talk directly to the speech therapist and work something out. Hopefully things are conyinuing to improve - please keep in touch and let us know hoe he and you are doing! So glad you are here - this is a great community! :hiya: :friends: remember to take care of yourself and encourage tje other members of your family to rest if they need it too! Hope to see you back soon! Feel free to PM me if you need anything - and remember that the forums are always here! God Bless! Link to comment Share on other sites More sharing options...
Guest veggie.vampire Posted July 24, 2006 Share Posted July 24, 2006 Hi, at 38 when I had my stroke I am much younger but had a similar experience and came through the other side. I was intubated the first night, it kept me alive. I had life support that my husband was advised to remove as I was dying. Thank God when I came off I breathed. Needed a trachy, tube fed for months, choked at rehab and nearly died (doctors gave me hours shortly after arrival). Never give up hope. Now I breath normally, eat mainly soft food and from moving nothing except blinking at first my left limbs are now totally normal. Rehab gave up on me, wouldn't have me back but now with a physio helping stand, something they said I would never do. Miracles can and do happen, keep positive. Why shouldn't he be that lucky too? Link to comment Share on other sites More sharing options...
papa68 Posted July 24, 2006 Author Share Posted July 24, 2006 thank you guys for your posts back. I think he will get his speech back is just a matter of him not tlaking too fast right now. Im just hoping this trach can come out eventually. THANKS AGAIN!!!!! mylee Link to comment Share on other sites More sharing options...
bstockman Posted July 24, 2006 Share Posted July 24, 2006 Hi Mylee just wanted to add my welcome to the board. My stroke was not as severe as many here. And no experience with trach. But you and your family know papa best. I think sometimes the Dr's are afraid to give to much hope. Also they don't know the person, as others have said. Some patients/survivors are real fighters and sound like your papa is one. He has a wonderful support system and that makes a HUGE idfference. Not much I can really add to what others have said. Take care of yourself, don't forget to eat and take care of you .... This takes it's toll on everyone. Sending warm wishes to you and your family Link to comment Share on other sites More sharing options...
jwatrous Posted July 24, 2006 Share Posted July 24, 2006 Real sorry for your grandpa's stroke, but you must stay strong, for your sake as well as his - It sounds like he'll need lots of care, and sure hope the family is ready, as without your support, he'll fail GOOD LUCK, GOD BLESS June :cheer: Link to comment Share on other sites More sharing options...
cara_a Posted July 26, 2006 Share Posted July 26, 2006 Hi Mylee, I am an OT in a rehab hospital and it sounds like you're caught up in a situation like many families are. Your family member can't tolerate the three hours of therapy per day, but without therapy how will he get strong enough to tolerate the three hours and qualify for rehab? :2cents: My two cents, not a professional opinion, would be to talk to your family member's doctors about what kind of exercises he can tolerate and talk to the therapists about teaching you and your family exercises that you all can be doing with him to build him up. As many have said before, family members involvement in therapy is so valuable, from the therapy side, we find there is better understanding of what we do and better follow through. Also, talk to the rehab hospital and ask for some definitive parameters for consideration for admission. That should give you some goals to shoot for. Provide them to his current therapists and ask, how do we get there and how can we help get there? I wish you and yours the best of luck in recovery. Link to comment Share on other sites More sharing options...
omgirl Posted September 4, 2006 Share Posted September 4, 2006 :cheer: Just a suggestion....try one of those things we used as kids to write/draw on then lift the plastic sheet to erase. I'm sorry I don't know what they're called, but I have used them for patients that couldn't communicate well. It relieved a lot of frustation and was fun for them sometimes to just draw on. My love and prayers to you and your family!! Omgirl Link to comment Share on other sites More sharing options...
jwatrous Posted September 4, 2006 Share Posted September 4, 2006 Sorry, your whole family is going through this, but I have never experienced his kind of stroke, but mine affected my left side, and that was bad enough, but being 39 :Tantrum: at the time of the stroke, I believe helped me fight off this brain insult - My best to all, and for sure, you'll be in my prayers June :blush: Link to comment Share on other sites More sharing options...
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