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    Old 09-16-2013, 11:47 AM   #1
    cruzm
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    So confused

    Hello, my dad (81) had stroke, a week ago, four days after a by pass surgery. The surgery went well, but a clot obstructed the blood flow to his brain, and he was sent back to the ICU. The neurologist told me, he would probably not speak again, and showed me the images of a very swollen left side of the brain. A day later I was told there was a possibility he could speak, even if it was "things that make no sense", as the doctor put it. From that day on my family and I have been on a terrible roller coaster ride. Some days he opens up his eyes for a bit, and then goes back to sleep again, other days, he likes it (I think) when I show him family pictures, and even gives the nurses a faint smile. He started swallowing a bit better yesterday, but still doesn't eat, speak, and his right arm and leg don't move. They already started therapy with him, but most of the time he is very sleepy. I feel my faith tested to the limit. I really want to believe he will be better, and sometimes I am afraid he'll stay this way. I thank God he is alive, and I belief that if he made it through the open heart surgery and up until now, to this stroke, there is hope. This really hurts, but as I have read through previous threads I feel warmth and understanding here. Thank you for your comments. Cruzm

     
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    Old 09-18-2013, 03:59 AM   #2
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    Re: So confused

    G’day cruzm,
    I apologize for taking so long in welcoming you and all loved ones to our family of stroke survivors. I suffered a clot in brain stem three years ago at the age of 54, even though I’m a lot younger than your dad, I also was not able to move on the right side nor speak very well.
    I’m still on the long journey of recovery, no one can tell you how long,or how much you will get back of your old self. Everyone is different, we cannot compare one person to another.
    I found that sensory simulation help me a lot. Talk to your dad, watch TV make comments to him, carry on as if he didn’t have stroke. Read to him something that he may interest him. Massage his affected side with different types of material, e.g. terry towelling, silk, etc. And most of all be patient, and never give up.
    God bless you and your dad, please keep in touch.
    Yours George.............

     
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    Old 09-18-2013, 08:09 AM   #3
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    Re: So confused

    George, thank you for your reply! It gives me so much hope. I admire your courage to overcome the stroke. Before this hit our family, I vaguely knew what it was about, but now, I am beggening to realize all the will and determination that it is needed to move forward and heal. My father is doing a little bit better, today they will move him to a room. I am a bit scared, of what lies ahead, but as long as he survives this stroke, I believe there is always hope! Your advice has been great, I will massage his right side, and celebrate on his small but significant victories. Thanks so much for taking the time to write. I hope you keep on recovering! God bless.

     
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    Old 09-18-2013, 06:50 PM   #4
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    Cool Re: So confused

    a) consider enabling "closed captions' on his TV (extra stimulation, and might help him follow programs better)

    b) once he's out of intensive hospital care, consider asking if there's no harm in giving him methyl-B12 (a vitamin, should come with Folic Acid) sub-lingual (under the tongue) daily tablets (the elderly are usually quite low on this essential vitamin); the tablets were of moderate help for my mom who was coping with ongoing mini-stroke (vascular) dementia

    sf

     
    Old 09-19-2013, 07:09 AM   #5
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    Re: So confused

    Good day Sf, thank you for your advice. Right now my dad seems to sleep most of the day. When therapists come in, he doesn't seem to participate much. Some times I feel hopeful, some other times I feel sad. Thanks because by reading the posts I've found lots of hope. Have a great day, God bless.
    P.s. any advice on early rehabilitation will be greatly welcomed.

    Last edited by cruzm; 09-19-2013 at 07:28 AM.

     
    Old 09-19-2013, 07:24 AM   #6
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    Re: So confused

    Good day Sf, thank you for your advice. Right now my dad seems to sleep most of the day. When therapists come in, he doesn't seem to participate much. Some times I feel hopeful, some other times I feel sad. Thanks because by reading the posts I've found lots of hope. Have a great day, God bless.
    P.s. any advice on early rehabilitation will be greatly welcomed.

     
    Old 09-19-2013, 07:36 AM   #7
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    Cool Re: So confused

    While it could go either way, I think doctors who live with this daily for decades have come to think it is better to not raise hopes so that any gains seem to be bonuses, rather than promise or suggest the likelihood of that which is uncertain.

    My father at 80, who had been living fully independantly fell and broke his femur (upper thigh) while out on one of his many walks, and was admitted to hospital: fell out of bed (and you know how high most hospital beds are, to save staffs' backs), twice(!!)--whyever he was not put in 'restraints' after the first time I'll never know; an operation put a pin in his bone to help heal it, but he developed urine flow problems and needed a second surgery for that (a 'TURP'), and he was reacting very poorly to the anesthetic used in his operations.

    After two months(!) in hospital, it was only with the greatest of difficulty that I was able to coax them to release him in my care instead of parking him in a rest home (he'd become categorized as Intermediate Care level 3, one step short of totally gone and needing full blown assistance, due to his ambulatory issues but mostly his mental state was really foggy). His mood was good, but his capabilities were pitiful and very high risk if left on his own.

    I moved in with him for two weeks (I live in a nearby apartment in the same building), got 'homecare support' assistance (I was clueless about what to ask for during his release so I said merely two '4-hour' sessions by homecare workers, because I was more worried about their being under foot and not much help). Anyway, at the end of two weeks back home in a familiar setting with company and concientious homecare (cooking etc.), (and my essentially 'locking him in' as he was prone to wander in a confused state), he was clearly recovering and I was able to continue looking after him as a frequently visiting neighbour.

    At about the two month point he was reassessed as Intermediate Care level I, (needs more than purely homecare assistance and has a mobility issue [turns out he was developing Parkinson's] and does needs modest guidance in looking after home issues [turns out his mental state had been very slowly deteriorating before his fall, eventually his diagnosis later became "Parkinson's Plus"). I managed to keep him in his home for three more years but became overloaded caring for my mom, too, so had to then pass him along to live a rest home for the bulk of his care for the next two and a half years (he passed shortly after a major drug related prescribing mistake. sigh!).

    Anyway, my point is: hang in there, doctors tend to be pessimistic, do what you can, but also look after you. You're the 'lifeguard', and there's zero point in crippling your own life as that'll handicap your ability to look out for your dad.

    sf

     
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    Old 09-19-2013, 08:37 AM   #8
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    Re: So confused

    SF, thank you for writing. I am sorry about your dad, but I am sure he must be so proud of his son, caring and loving him all the way.
    You are right about doctors; they give the worst case scenarios, and it's understandable, they don't want to hurt any body's feelings. I believe God always has the last word on every thing, so that gives me a lot of peace when I have to listen to their reports.
    This time of life is so challenging, and I can relate to what you wrote, because my brother and I have to take turns in taking care of our dad (hospital), and my mom. I pray for strength, and wisdom during these days. And like you said, all the negative thoughts must be destroyed immediately.
    I must also take care of my self, some times it's hard, but thanks to posts like yours I feel there are angels every where.
    God bless

     
    Old 09-19-2013, 08:42 AM   #9
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    Re: So confused

    SF, thank you for writing. I am sorry about your dad, but I am sure he must be so proud of his son, caring and loving him all the way.
    You are right about doctors; they give the worst case scenarios, and it's understandable, they don't want to hurt any body's feelings, they just don't seem to do it right sometimes.
    I believe God always has the last word on every thing, so that gives me a lot of peace when I have to listen to their reports.
    This time of life is so challenging, and I can relate to what you wrote, because my brother and I have to take turns in taking care of our dad (hospital), and my mom at home. I pray for strength, and wisdom during these days. And like you said, all the negative thoughts must be destroyed immediately.
    I must also take care of my self, some times it's hard, but thanks to posts like yours I feel there are angels every where.
    God bless

     
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    Old 09-20-2013, 02:19 AM   #10
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    Re: So confused

    G’day cruzm,
    I hope you are in good health and sprits and your father is steadily improving. You and your family must keep healthy both physically and mentality. Your sprits must be up when you visit your dad, he must not sense that you are down. Believe me he will pick on your moods. I couldn’t help feeling, that I was going to a burden to everyone the rest of my life, even though nobody would ever think that way. You must remember that everyone is scared of the unknown, both family and patient, it’s normal.
    The road to recovery is long and hard, some days you take one step forward, then two steps back. You must stay positive. Its easier said than done.
    Please keep in touch, and God bless.
    George........

    Last edited by goingtorun; 09-20-2013 at 01:49 PM.

     
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    Old 09-20-2013, 04:38 PM   #11
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    Re: So confused

    Good day George, I hope you are doing great today. Thanks so much for writing, I feel some one understands me, somewhere on the other end of the world, and that cheers me up during these cold days.. My father is doing a little bit better, but he falls asleep every time therapists come to see him, in fact he sleeps most of the day. Today we listened to old music, and I showed him pictures. He seemed attentive, but other times he just falls asleep again. As you said, it is the unknown that seems scary sometimes, but it helps me believe that God is with us every step of the way.
    The doctors are removing my dad's nasogastric tube, because his swallowing has not improved much, and are inserting a gastric one. I hope this brings improvement, and opens up a new hopes.
    I have remembered to take care of my self. I feel better, and with more energy than before. It also helps me read about strokes, to understand how I can be more helpful every time. Are there any links that have been useful in your personal experience?
    Again, thanks so much George for taking the time to write. It has meant a lot. Take care, and God bless.

     
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    Old 09-20-2013, 07:40 PM   #12
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    Re: So confused

    Dear Cruzm,

    My father (65) recently suffered an ischemic stroke after having bypass surgery. The surgery seemed to go well, then my brother called me the next day to tell me he wasn't moving his right side. We all flew to be by his side because the doctors gave him a very, very, poor prognosis. Each day his brain kept swelling. The stroke affected the left side of his brain and now was swelling into the right. They basically told us to prepare for the news that his brain stem would be affected and whether or not we wanted a DNR. We all sat by his side praying the rosary, just talking out loud to let him know we were there. On the fourth day, we got word that his brain swelling had subsided and that he would probably never wake up and if he did wake up, he would be a vegetable and not know who he is, or recognize who we are. We did not believe any of it. Another thing that happened was, I was speaking to him letting him know what the doctors were saying and all of a sudden, I saw him move his right side. I said outloud, "You know, for someone who's paralyzed on his right, you sure are moving that side a lot." I repeated what the doctors had said and asked, "Dad, do you want us to save you?" And the next thing I knew, he moved his shoulder. I freaked out in delight and said, "OH MY GOD, I need to call my brother." But before I called my brother I said, "Dad, just so I know this isn't a fluke, please, can you hear me? Move your shoulder again," and he did. When I told the doctors this, they basically said it was just reflexes, but I'm sorry. I knew he could hear me. We chose to send him to rehabilitative care instead of hospice. The doctors seemed disappointed that we chose this route but we had complete faith. He was moved to a VA hospital for Acute Care, then moved to a nursing home/rehab. I wish I could move him to a rehab closer to me but instead, I fly back to see him once or twice a month and go to the rehab early in the morning and stay there past dinner. I've seen improvement, but he sleeps a lot which made me nervous, but from what I am reading, sleep is good. He does try to talk but most of it is mumbling. I try to play games with him by using a stress ball. I tell him to try to grab the ball and he does, with a little help. I also have flash cards that I took from my 6 year old. I have faith that he will get better. There is a scientist, Jill Bolte Taylor who suffered a major stroke. You should look her up and read about. I take videos of him trying to communicate with me and I always tell him to fight, because we need him, and we are fighting alongside him. The one thing that sucks is his health insurance. He is a Navy Veteran, also has private insurance but the private insurance stopped paying because he is not recovering according to their standards. They don't realize it's a long, slow process. So now we have to use his military insurance, and until that kicks in, they haven't been doing aggressive therapy with him. I pray that God will lead us to the right path always, and to give us a second chance with our dad.

     
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    Old 09-20-2013, 09:13 PM   #13
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    Re: So confused

    G’day Cruzm,
    I hope this post finds you and your entire loved one in good health and sprits. I slept a lot after having the stroke and found most of the people in the stroke ward also slept quite a bit. I believe when you have a stroke it’s like being hit by a MACK truck, the brain is swollen and needs lots of time to rest.
    A book that I stumbled on by accident, in my hunger for information, was “The Brain That Changes It’s Self” by Norman Doidge. It gave inspiration and hope, he tells of many case studies and how people survive against all odds. It gives strength and hope to carry on and never give up. The book in part is quite heavy going in regards to medical jargon used, but once you get past that it’s very interesting. I remember 6 weeks into my recovery my therapist telling me that “this is your new normal you have to just get used to it”. In my heart I couldn’t and wouldn’t except his statement and believe me it just made me try harder.
    Remember you have to look after yourself so that you take of your father. Please keep in touch, and God bless.
    P.S. contact your local Stroke Association.
    George................

     
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    Old 09-21-2013, 08:26 AM   #14
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    Re: So confused

    Dear ewhitfield, I hope you and your family are well. Thank you so much for your reply, I really needed it. In the middle of this storm, sometimes I tend to think my family and I must be the only ones experiencing this.
    I can feel your great love and care for your dad, and that is one of the great reasons the initial prognosis of the doctors has changed so much. Doctors mean well (most of them), but there is something going on inside of them, like a defense mechanism may be, that makes them cold. I respect them but, I chose to believe in God and only Him.
    I share your faith, and I pray that this will soon be a distant memory, with the happiness of good results.
    I am sitting next to my dad in his hospital bed. Doctors come and go with their cold faces, every one seems to go about their own business, not even stopping for a smile.
    I am glad you shared your story with me. I keep finding hope in sweet people like you.
    I ordered the book, I'll start reading it today.
    I pray for your dad's health, may he continue improving every day. I pray for your family too, may God's abundant love guide your hearts every day.
    God bless.

     
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    Old 09-21-2013, 07:07 PM   #15
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    Re: So confused

    Dear George, your words always find me when I need them the most. Thanks so much. I'll be in touch. God bless!

     
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