Hemorrhagic Stroke/Recovery Times OK?

[pookiemon]

My sister-in-law had a hemorrhagic stroke with a intracerebral hemorrhage. This was on May 18th. They have done a Ventriculostomy. The gas man found her in the driveway. We figure it had been somewhere between 20-35 mins. before she was found. They have her in a medically induced coma where they say she will stay for the next 3-4 weeks. Is this normal? Also, they did a cat scan on the 18th, and 19th and we were told the bleeding had stopped. They are doing another one tomorrow, and they are now talking about putting a shunt in. Once again is this normal? They say if she survives (her chances are 50/50, she is still in critical/stable condition) she will have slurred speech, minimal movement of her right arm, and a limp with her right leg. Should they be able to tell this while she is in the coma? She was concious after they flipped her over in the driveway and upon arrival at the hospital which is approx. 40 miles away.We look forward to your response. Thank you,

Lost without her hanging with us!

Barbara

[wjd13104]

Hey Barbara,

I don't have a whole lot of answers for you.  I do want you tell you that there is others out there that have suffered and are still suffering like you.  My boyfriend had a hemorrhagic stroke on March 19th, thankfully I was with him when it happened so we were able to get to the hospital quickly.  I don't know what is going to happen to your sister but I do know that I can give you some hope.  My boyfriend two months after the stroke has gone back to work he still has partial blindness but slowly he is coming back to himself.  This is a blessing because all I read most people that have this type of stroke do not fair so well.  So what I can tell you Barbara you have to have faith that all will be as it should, you are not alone, and therse are miracles out there.  If you should need someone to talk to, to yell at, or just to feel normal around you can email me at ***@****.  I hope all goes well and I will keep you in my prayers.

Andi

[tommahwk]

On June 4th, in the evening, my beautiful mother had a subcerebral hemorraghic stroke on the right side of her brain. She is only 66. The doctors said it was a large bleed, 4 x 5 centimeters. They gave her five days to live. It has been two weeks and she is still fighting for her life. She has a feeding tube and a tracheotomy. She is slowly being taken of the the respirator. The strangest part of her condition is that she keeps opening her eyes and blinking but it's a blank stare and she doesn't seem to be there. Sometime when I walk into her room and say hi Mom I'm here, she opens her eyes but has no expression. The last couple of days  she has started to yawn and make faces when I put ointment on her lips. She doesn't like it when I touch her lips. I have been rubbing her down with moisturizer everyday. The last two days when I rubbed it on her knees and thigh areas she started shakinng her leg like I was tickling her. What does this mean? I am having a difficult time dealiing with this unknown and unpredictable recovery process. The doctors keep giving me the worse case scenario but I see things happening which they don't really explain to me. Has anyone had this sort of experience?

[tommahwk]

I forgot to mention...Surgery was not performed and no shunt was used. The neurosurgeon said my mom was not a good candidate because her bleed was deep in the brain. She would not have survived the surgery.

[mantamax]

sorry to hear about yor mom. y mother had a massive hemmoraghic stroke nine months ago. They did a "Brain Bleed" which drained the fluid/blood surrounding her brain and pusing it against her skull. A few days after the brain bleed, she could talk and say a ferw words, follow commands, and I could tell from the look in her eyes that she was still there. somedays she has a blank stre buit My sister and I just keep leeting her know we are there and she cpmes back. You know a stroke on nthe forehead, a squueze of the ahnd goes a long way. She is currently at KAIser and we have fought tooth and nail to get her some type of therapy. We are still fighting.

[tommahwk]

Thanks for sharing your story. My mom woke up four days ago. She is breathing on her own. She is responding to commands and totally knows who I am and all of friends. She is shaking her head yes and no when we ask her questions. I am very happy that she is awake and her personality is entact. She only has use of her right hand at this poing. Does anybody  have a story about a loved one who has regained use of more parts of thier body?

[joesi]

Simply - NEVER GIVE UP! The human body is amazing. 15 months ago my wife (53 years old) had a hemorrhagic stroke on the right side. She was not expected to live the day. They placed 13 platinum coils in the aneurysm (16mm x 20mm). Then, she was not expected to live the week. At first, she was totally paralized and on a ventilator. She was blind on her left side, both eyes. Today, the doctors are amazed at her recovery. She walks, talks and goes to work everyday. She even drives although I still need to be in the car with her. Even her doctor said that if he didn't know she had a stroke, he would never be able to tell she had one today. Her biggest complaint is that she feels "dumb". She complains she's not as sharp as she was before. What I've noticed is that stroke patients seem to lack self motivation. That's where you come in. Keep after the patient everyday. Keep them active and keep on challenging their stroke induced deficiencies. Their diet is now extremely important. High in protien. More sleep is important too, I think. She can sleep 12 hours a day now. Just remember, NEVER GIVE UP! It's gonna take lots of time. Keep on get'en it!

[tommahwk]

Thank you so much for telling me about your wife. She sounds like a fighter who won a very difficult battle. I stop by the hospital several times everyday. I tell my mom not to give up and to fight I encourage her to try to move something everyday even if its just a little bit. I tell her that I am going to help her with everything and together we will win. Thanks again for the very encouraging story.

[sailorswife]

I greatly appreciate your stories of recovery after hemorrhagic stroke.  My 81-year-old husband had this type of stroke on 7/3.  It was a rather large bleed in the back right portion of his brain.  Many of your experiences sound exactly like mine.  He is on a ventilator and feeding tube, although he has been breathing for up to 10 hours without the vent.  He has just begun opening his eyes and blinking them, and also lifting his right arm a bit.  I see a little more "life" in his eyes than I did a few days ago, but no sign of recognition.  The doctors tell me he has good reflexive reaction in all four of his limbs.  All of his vital signs are excellent, and I think he can hear, because he seems to calm down when I play his favorite classical music through headphones on his ears.  No one can tell me what his long-term prognosis might be, or even when or if he will wake up and recognize me.  I just keep touching him and talking to him.  Some people tell me just to pull the tubes and let him go in peace, but it is so hard to know what to do.  Especially after reading some of your comments about it taking 3-4 weeks to regain consciousness, I feel like I need to give him time to fight back if he wants to.  Anyone have any advice for me?

[tommahwk]

I'm so sorry to hear about your husband. I know how you feel and what you are experiencing right now. After my moms stroke the Doctors and others encouraged me to withdraw care and let her go in peace. There was one young doctor who told me to give her a chance. I thought about what she would want to do and decided that she would not want to give up so easily. She would want to exhaust all of her options before giving up, so I kept up the fight with her.

Its been six weeks and she is completely awake, alert, and responding to commands and anwering questions by shaking her head yes/no. Although she is still in serious condition, she seems to be doing well. She is breathing on her own but still on the feeding tube.

She just moved to a continuing care facility and has started occupational, speech, and physical therapy. She has swallowed several times on command and mouths words because she cannot talk yet. She is still on the Trachotomy.

She can move her right arm and leg but is not able to move her left side at all. She is even smiling although its very difficult at this point. Her therapists are saying she will need at least six months to regain more use of her body.

Don't give up hope. Stick close to your husband and encourage him. He can difinitely hear you! Also, make sure he is being turned from side to side every two hours so he does not develope any bed sores.

I found out that my mom had a basil ganglia stroke. It sounds similar to your husbands.

Best wishes for your husband and you.

[sailorswife]

Thanks "tommahwk" for the encouragement.  My husband has been moved out of intensive care into a long-term acute care facility three floors down.  He is now up to 14-16 hours breathing on his own, and he is moving his right arm quite a bit, especially when I talk to him.  The medical people say the movement is "not purposeful," but I think there is more purpose than they understand.  He is moving his eyes from side to side, and seems to stare at me intently and furrow his brow, like he is puzzled.  Sometimes I think he focuses on me, but other times he seems to have a blank stare.  His best friends came to see him today, and they said they thought he recognized them.  He moved his legs and his right arm and kept blinking his eyes when they talked to him.  His new case manager says they will not even begin to think about what is next for him for 15-20 days, waiting to see if he can breathe round-the-clock on his own and if he regains more consciousness.  Knowing how long it took your mother to wake up helps to give me hope.  Thank you again!

[tommahwk]

Hi Sailorswife!! This is such great news and it sounds so familiar. Its almost exactly the same way my mom's recovery went. I would not listen to what the nurses and doctors say about movement. Your husband is probably trying to get comfortable or is moving his arm to find your hand so he can hold it. I am really happy for you!

My mom had the same blank stare and blinking. My theory is, at that stage of the recovery, your husband (and my mom) are not in control of thier vision. He is trying to focus and look at you but the brain is still recovering so his eyes are not working. Slowly but surely they will start to work.

My mom took several weeks to get her sight back and today  it is still limited. She can see much much better on her right side and has limited peripheral vision on her left.

Hang in there and just make sure you husband is being turned from side to side in the bed, make sure his skin is moisturized and he is getting good nutrition and hydration.

Yesterday my mom talked for the first time in two months!! She sounds kind of looney but it was so exciting to hear her call my name. She has aphasia so what she wants to say doesn't come out exactly the way it should but she should improve over time.

The speech therapist is working with her everyday and she has a special valve on her trach which allows her to talk.

She is also being moved downstairs one level for the next phase of therapies which will be more intense.

Keep me posted. Don't give up hope. He will breathe on his own. It just takes time.

Keep talking to him and encouraging him. I talk to my Mom everyday and tell her how strong she is and how wonderful she is. I tell her my refrigerator is empty  and I want her to cook me some good food when she gets out of the hospital.

I am really happy that your husband is doing well!!

[sailorswife]

Dear tommahwk ~ Two pieces of good news today about my husband.  The pulmonary specialist says he is sure Rick can be weaned off the ventilator, because he is doing so well when allowed to breathe on his own.  He still has not responded to verbal commands or nodded his head, the way you say your mom did, but he is moving his right arm and both of his legs much more actively.  Today, he was looking right at me, so I puckered up my lips and made a kissing motion.  Almost immediately, he puckered up his lips and did the same thing.  I did it four times, just to make sure it wasn't involuntary on his part.  Each time, he responded with a kiss.  Made my day!!!  I guess he can understand the visual cues, even if the verbal requests to do things don't make sense to him yet.  Isn't it amazing the way the human mind works?  We can build every weapon known to man, but have very little understanding of what goes on inside our heads.

The news about your mom sounds very encouraging, too.  I'm glad she is able to talk some.  It must be very frustrating to be trapped inside yourself with very little way to communicate.  How is she doing on movement?  It sounds like you have her in a very good facility.  She'll be cooking your dinner before you know it.  Best wishes!

[tommahwk]

Dear Sailors Wife, That is very encouraging. It sounds like your husband is on his way to recovery. Everybody I have spoken to said, if your loved one can begin to breath on thier own, they will have a better chance for recovery, so this is good news for you. My mom didn't really respond to anything for at least two weeks and only puckered her lips to give a kiss about two weeks ago. So I think you are right, he is in there. I am really excited that your husband is moving both of his legs and right arm! My mom only moves her right side and has not been able to move her left side at all. Her motor skills on the right side are very poor. I am hoping that her motor skills will improve after more therapy and hopefully she will regain some movement on the left side.

Last week my mom started eating creame of wheat and every few days they will give her different types of food and test her ability to swallow. So far she is doing well. She is also breathing completely on her own and her trach has been capped. It has been two long months, and she is not giving up. My next step is to get her outside in the Sunshine and fresh air.

She is at a very good facility. After she left the main hospital, I had her moved to a continung care facility very close to me but quickly realized that they were not very good. She stayed there four days and I had her moved to a different facility one hour from me and she has been recieving excellent care. Its a long drive but I have piece of mind. I still try to see her everyday.

My mom is suffering from aphasia so she sounds a little crazy still but most of the things she talks about make sense. Her short term memory is not good and some of her long term memory is gone for now. She is more alert and makes more sense in the mornings and early afternoons. She seems to lose it in the evenings when she is tired.

The human body/mind is amazing. Brain injuries are a deep mystery. I wish the doctors had more answers and cures. I hope your husband continues to improve and can go to a continuing care facility soon. Hang in there!!

[sailorswife]

Dear tommahwk ~ I'm glad your mom is getting good care.  That will be my next step ~ finding a place for my husband that will treat him well and help him keep improving.  He continues to astonish all the doctors and nurses who told me he would never improve.  He is completely off the breathing machine and has a plug in his trach, so he can talk to me.  His speech is about 80% clear, and I am amazed at how much high-level thinking he can do.  He watches the news and asks questions about it.  He jokes with the nurses.  Yesterday, he said to me, "Could you please ask someone in authority if I can have some Tylenol?  I have a slight ache in the back of my head."  No one thought he would ever be able to construct a sentence like that.  He can even spell.  He wanted to comb his hair with a "decent length comb."  I couldn't understand the word "length," so he said, "L-E-N-G-T-H.  Length."  Incredible!  I hope everyone who visits this site after their loved one has had a hemorrhagic stroke will be encouraged by the experiences of my husband and your mother.  With enough tender, loving care and a bit of prayer, surprising things can happen.  For four weeks, my husband was nearly in a coma.  Today, he was combing his own hair.  There is still much work to be done.  He needs lots of therapy to control the movements in his arms and legs, and he still needs to work on swallowing ~ but he is in good spirits and enjoying life.  I especially want to thank you, tommahwk, for your optimism and encouragement.  Your words made some very dark days a little easier for me, and you are part of the reason my husband is still alive.  You (and one optimistic neurosurgeon) helped me to believe that he could recover.  Thank you!

[lahinva]

How is your mother doing?  Has she gotten any movement back in her left side?  My dad had a similar stroke and is regaining a littlemovement in his left side.

[L0veLife]

Dear All,

Thanks for sharing your stories. I also want to share mine.

My mother 70 years old got hamorraghic stroke on June 23, 2006, about 20cc bleeding. Everything seemed to be hopeless at that time. She lives in a small town, with very limited medical service, in an under developed country. Her condition was not fit for travel to other city. Looking at the CT Scan & her age, the doctor said that she wouldn't survive in 10 days. Her conditions became more stable after 1 month.

And today, in 2 months, she can speak (like wisper). She remembers name of days, she can count, she can communicate, make joke, & laugh. The progress is amazing. It must be miracle.
Next Sunday, we will take her to other city, where her children can give her more attention. By the way, we don't live in the same city.
She still needs time to recover her right body & her ability to eat. She uses feeding tube now.

I wish my story can give you encouragement. And I really wish I would be back to share more good story about my mother later.
Keep in faith, miracle does happen.

With love,
Andry

[NMcP]

My sister, who is only 48, suffered a major Hemorrhagic Stroke on August 12th (A little more than 2 weeks ago).  At that time,she was responsive and could wiggle her toes, squeeze our hands and even talk a little.  Over the first week, the bleeding stopped, but the swelling didn't go down and it appeared she got worse.  She got pneumonia and had to have brain surgery to remove the clot.  She is out of CCU (in a regular room now), but she is on a feeding tube and has had a trach tube (to help her breathe).  She is breathing for the most part on her own.  She hasn't opened her eyes since the surgery and she is finally starting to wiggle her toes and she does squeeze my hand a bit.  The hospital won't start any physical therapy until she opens her eyes.

We are all experiencing great highs and lows because every doctor tells us something different.  We are told she isn't in a coma, but she also isn't responsive to them.  It's really tough to know what to believe.  She scratches her nose and wiggles around in her bed, but we don't know what sort of mental state that implies as she really can't communicate.  Plus most of the time she appears to be asleep. They are going to do some sort of brain tests this week to check out the brain activity.  

Did any of your family members experience the same thing?  We know this is going to just take time, but the doctor's seem to be dissapointed she hasn't come around yet (even though it's only 2 weeks).  I'm pleased with the baby steps she makes every day, and I'm beyond clueless what the doctors are looking for.   Any insight would be GREATLY appreciated.

[Pandorasue]

My 52 year old boyfriend suffered a basal ganglia stroke a week ago today.  His bleed is 8 centimeters.  He has not yet responded to anything or opened his eyes.  This forum gives me hope for him.  He is a very strong man and I think he may be able to recover.  Only time will tell.  His children say that he would not want to live in a nursing home, partially paralized, not being himself.  I am afraid they are going to have the ventilator removed.  I think it is too soon to make that decision--I want him to have a chance.  This situation is so hard on the family. I love his children and his whole family.  They have been very good to me.  We are all exhausted.

[WindyWendy]

I had a hemmoraghic stroke in February of 2005.  I am amazed at how different everyone's experiences have been.  They called me miracle girl in the ICU and after 10 days in acute rehab I was able to walk out without a cane.  I was 41 at the time and I attribute my recovery to my faith and great family support.  I would have laid there and died if I did not have people encouraging me to get better.  Learning to make pancakes again for my 6 year old was the biggest milestone.  Physical therapy was started on me immediately.  I was fortunate to have a stroke specialists at the hospital that I was life flighted to.  She went around to other hospitals and taught them how to handle stroke patients.  Keep encouraging your loved ones.  Let them know how much they are needed.  Watch for depression.  And get them a great physical therapist.  That's my advice.  Best of luck to you all.

[NMcP]

My sister went to an accute care facility yesterday (from the hospital).  We were always told the goal at the hospital was just to get her out of the ccu.  Now she is in a facility that specializes in stroke rehab, etc.  They are going to give her some tests in regard to swallowing, etc.  Every day she responds a bit more.  When we told her an old boyfried was coming to visit, she opened her eyes wide : )   It's still really hard, hurry up and wait for test results, etc, the ups and downs emotionally.  The hardest part is when people come to see her.  I'm not sure what they expect, tap dancing?  One woman had the nerve to tell us that she was praying for God to take her (my sister) home.  It hasn't even been 3 weeks yet!  The body is a mysterious, complicated miracle.  We are all so pleased at the progress she has made so far!!  It is important to have faith; to keep hope.  Of course we all understand and accept the various possible outcomes.  But we would really be selling ourselves (and her!!) short if we didn't encourage her and give her a chance!

WindyWendy - Thanks for the encouragement!  This is the stuff we need to keep hearing!

Pandorasue - keep the faith and KEEP talking to him.  Hold his hand, stroke his forhead. It's way to early in the game to know what is going on inside that noggin. I know it's really hard, but keep letting him know you love him and touch him, kiss him, talk to him.  Let him know you are there!  The doctors keep telling us that her family always seem to get the best response from her.  Again, it seems to me it's way too soon in the game to make any sort of decisions.  

[Pandorasue]

Thank you all.  I want to give him a chance, but we are not married.  I have no say in what his family decides to do.  I think he will get better, but his family is listening to the doctors and nurses.  It's ONLY BEEN A WEEK.  I leave work and drive 130 miles round trip every day to see him for two 15 minute sessions.  I wish I could be with him all the time, but unfortunately, I have to keep my job.  I have not lost hope, but his family has.

[NMcP]

Is there anyway you could get them to take a gander at this post?  

Another fantastic resource is the American Stroke Association's Warm Line at 1-888-4-STROKE (478-7653).  We called them because we got the same sort of thing from the doctors.

My guess is very few doctors have had loved ones that have gone thru this so they only look at the clinical aspect of things and they are incredibly negative to boot.  Add to this people always go by what they see on tv.  TV shows only show 2 outcomes in strokes.  Either the person dies or they jump up and tap dance around the room.  They NEVER show the reality of things, the emotions or complications of things.  Maybe you can call the warmline to get some ideas for yourself and the family.  The warmline guys have either been thru it or have close family members that have.  

The initial hospital my sister went to was horrible!  They gave us little or no encouragement or hope.  Now that she is in an Acute care facility, well, it's like night and day.  The care is different, the encouragement and treatment she is receiving is different.  I know she has a long ways to go, but she can squeeze our hands, she is slowly opening her eyes, she nods her head, wiggles her toes, etc.  

Maybe you could print off some of these posts to show to the family to give them some hope and perspective as well.  One week isn't enough time by any means.  His body has gone thru a major shock and of course it's going to take a while to figure out what's really going on in there.  In the scheme of things, it's worth giving him the extra time and encouragement.  There is nothing to lose and everything to gain.

My thoughts and prayers are totally with you, your sweetie and the family.  I totally understand what a hard time this is and again, maybe if you print out some of these posts and call that helpline, they might be able to give you some tools to work with : )

[sailorswife]

Pandorasue ~ I understand that you love your boyfriend's children, and this would be an awful time for disagreement among those who love him.  BUT....if gentle persuasion doesn't work with his family, and it becomes a matter of life or death for him, have you considered seeing a lawyer and trying to obtain an emergency injunction to prevent the removal of life support?  Remember that girl in Florida?  Even if you could get a hearing, it could delay any action for awhile and buy your boyfriend some time.  Fifty-two is way too young to give up on him so soon.  He has lots more strength and resilience than someone like my 81-year-old husband.  If my husband could make it, there's a good chance your boyfriend can too.  How long have the two of you been together?  Long enough to be considered de facto married in the eyes of the law?  Perhaps you have more "standing" to say what happens to him than you think.  At the very least, you should make sure an EEG is done, to see how much brain activity your boyfriend has.  I'm not sure it is legal to withdraw care from someone whose brain is still functioning.

As to the wishes of his children, of course young people are going to think life isn't worth living partially paralyzed.  When they are older, they may view life differently.  You might be interested to know that I told my husband about the choices I made to keep him alive.  I asked him if I did the right thing.  Was he glad he was alive, even though not everything was moving and working right?  He said, "Yes, I am.  Thank you."  He also said, "Life is precious.  It's the only thing we have besides the people we love."  These comments are from a man who, according to the doctors, would never come out of a semiconscious state.  It is WAY too soon to know whether your boyfriend will "be himself" two months from now.

You will be in my thoughts and prayers.  Try to rest as much as you can.  If your boyfriend is given a chance at life, he will need you even more when he wakes up.

[lahinva]

How is your husband doing now?  My dad is 80 and had a similar stroke.  I saw him this weekend and he seems to be doing better, but his short term memory is just not there.  I was wondering if your husband has any issues with short term memory?  The therapists are wanting to discharge him from therapy again because they say that even though he is getting stronger, the therapy is not turing into any thing functional beccause of his short term memory.  I don't want to see him lose therapy again.  Any advice would be great....

[Pandorasue]

My boyfried died early Sunday morning on his own.  No decisions had to be made.  I will miss him terribly.  Good luck to everyone and your loved ones.

[NMcP]

I am so sorry for your loss!  You are in my thoughts and prayers.

[NMcP]

It's 4 weeks to the day after my sister had her stroke.  She has been in the acute care facility for a week.  They have started the physical therapy.  She is opening her eyes, she wiggles her toes for us and she has quite a firm grasp in her right hand. :)   Most of the time she still sleeps.  But tonite we caught her in an amazing mood.  We always try to make her laugh.  This time we must have been extra humerous because she had the biggest jack o' lantern grin I have ever seen!  It made us feel great because we know she understands us and knows who we are for sure.  She can't talk (trach tube) and is still being fed via the stomache tube.  But that grin, oh man!  I almost cried it made me so happy!

sailorswife, tommahwk and everyone else - Please let me know how things are going.  It's so hard to find encouragement these days.

[sailorswife]

Pandorasue ~ I am very sorry to hear about your boyfriend.  I'm sure we all grieve with you, because all of us came so close to walking in your shoes.  We wish you wisdom and strength, as you try to live a life that would make him proud of you.

Lahinva ~ My husband is improving, but very slowly.  The nursing home he moved to is not as focused as the acute care facility was on moving him forward.  He still has a plugged trach and is on a feeding tube.  I am very worried that he will slide backward.  At the acute care facility, he was re-learning to swallow, which he must do before he can eat without the feeding tube, and before the hole in his throat can be closed.  At the nursing home, swallowing practice has been virtually discontinued.  I keep having to pressure the staff every day to make sure he receives occupational and physical therapy and is allowed to sit up in a chair for at least two hours.  His short-term memory and also his level of awareness are variable.  Sometimes he forgets what I have told him.  Other times, when I tell him something a second time, he says, "I know.  You already told me that."  Sometimes he can comprehend a rather involved subject.  Other times, he either goes completely blank or has a kind of panic attack and becomes very agitated.  Hearing what you say about therapy for your father makes me wonder: are these facilities looking for any excuse they can find to do as little therapy as possible?  Is your father in a nursing home?  Can you speak with the Director of the facility, or perhaps with his doctor about your concerns?  It sounds like he was discharged from therapy once before.  What about reaching out to some sort of advocate, like the state board that oversees nursing homes, or an attorney?  I myself am going to try to get action and adequate therapy for a while longer.  If that fails, I will look into bringing my husband home and having therapists of my own choosing come to the house.  At least that way, I would be able to sleep at night, instead of lying awake wondering how my husband is being treated during the night.

NmcP ~ I am so happy that your sister is coming along well.  If she can smile, you are very fortunate.  My husband can only accomplish a slight lift of the right corner of his mouth.  Cherish the days when your sister makes progress, and hold onto them when she has difficult days.  This recovery process is a long series of ups and down.  Yesterday, my husband seemed to understand a complicated article I read him about "dihedral" in model airplane wings.  He was very alert and talkative.  This evening, I could hardly get him to respond to me at all.  The nurses tell me that after stroke patients take in lots of new information, they need to sort of "reboot" and assimilate it all.  You will probably see your sister taking two or three steps forward, then one step backward.  Don't worry.  Gradually, she will get better and better.  All my best wishes!

[NMcP]

Thank you so much for the encouragement!  Yesterday we got her to give us a thumbs up.  Later in the evening (we visit in shifts), my mom told her a friend was sick and asked my sister if she wanted to sign a card.  She did a slight nod and raised her hand to hold the pen.  My mom guided her hand to write her name.  It is sorta legible and granted my mom did the work, but what a HUGE step for her!  She opens her eyes a lot, but we don't really know if she can see us or not.  But you are so right!  Every little tiny step is celebrated as it is a step forward.  We hang on to those dearly as there are those days when she isn't quite as "enthusiastic".

[lahinva]

THanks for all your thoughts.  We have spoken with the facility this past week.  They reevaluated my dad for therapy on Friday so we are now waiting to hear from the insurance company as to whether or not he qualifies for more therapy.  Also, tomorrow he is going for an evaluation at an acute rehab  facility to see if he can now handle that level of rehab.  It is such a slow process.  Has your husband gotten any movement back?  Is he able to stand at all?  My dad is now able to move his arm and leg some, but has no strength in his leg at all.

Please continue to keep me posted on your husbands progress... It's nice to hear from other people as to what works and what doesn't.

[jellybean55]

It has been incredible to read this thread.  I feel for everyone who has been going through this with their loved ones, and the survivor stories are amazing.  It has really helped me to read the stories and I send the best of wishes for everyone in recovery.  It puts my friend's experience in perspective and I see we have a lot to be thankful for.

My friend, age 44, had a hemorrhagic stroke on July 29.  She was helicoptered to a major hospital and had a craniotomy on July 31 to clip the aneurysm, but they were unable to get a clot that was too deep in the brain.  They are still monitoring the clot.

She did not open her eyes much for a week or more.  She was breathing on her own in a few days and was speaking clearly but slept all the time.  The stroke was on her right side so her left is impaired. She had swallowing issues so had a feeding tube installed, but she just got that taken out last week!

She was moved from neuro-ICU to a neuro unit and now is at an acute care rehab hospital.  She has gotten more and more aware of her situation.  She is making progress, but it is far slower than she wants.  She is still on choking precautions but has been upgraded to having her food cut small (first it was ground and then chopped, now cut).  

She has started to move her left leg.  She goes to physical and occupational therapy several times a day.   She still complains of head pain and her eyesight is not good yet, but she is opening her right eye more (her left eye which is more impaired is easier to open for some reason).  She wears a patch to try to train the eye to open.  She has double vision sometimes and says her depth perception and peripheral vision is bad.

I am most worried for her psychological state at this time.  She is not married and was actually with a fairly new boyfriend (thank goodness he was with her or she may have passed away) at the time of the brain bleed.  She has so many friends who have gathered around her, yet every time I see her I fear she is getting more and more depressed.  Her family (who she is not very close to) is aware of her depression as is the hospital.  Now she has to be moved to a subacute facility that will have less intense therapy, but I guess the insurance feels she is plateauing for the more aggressive place.  

What I have read here reconfirms how important the next place will be.  Thankfully she has very loving friends who are visiting and interviewing at all the options under her insurance plan.

Sometimes she speaks very lucidly about things and other times she seems to ask questions that are off the wall.  I guess it just takes your brain a long time to reshuffle the deck and figure out what the heck is going on.

Sailorswife--I think of my Mom when I read your posts.  My mother is with her soulmate, my father, since they married in 1950.  I hope that she would show the courage and strength you have if anything happened to my Dad like this.  Bless you and your husband.

[mfanhawk]

Hello all. My dad of 85 year old just celebrated 60 years marriage with my mom, on Aug.6th and on Aug 15 while getting ready to go to a senior club meeting,it happen while he was taking a bath. It took an 1 1/2 hours or more to get him to the hospital. Cause he didn't want to go and mom listened, but my sisters boys picked him up out of the tub and put him in the car and off they went. My dad is 240 pounds, still a fireman, bowls 2 times a week, 2 senior clubs, Atantic City trip manager, I just could go on. Still good vision, drives, goes out to eat everyother night. But on Aug 15 everything changed. The CAT scan told us, it was the worst stroke a person could get. We where all in shock. The Brain doctor came in said nothing good. But this family has a lot of faith. SO- He got a room in the hospital at 10pm arrived to the ER at 11:30 am. They gave him very good care, the ICU he stayed in for 4 weeks. His right doesn't move, they put a clear jell in his eyes to keep from drying,which made him not want to open up his eyes, so look for shine around his eyes, looks like vasoline, tube down his nose to keep the food from going into his lungs which later turned into a feeding tube. He also was intabated (tube to his lungs, so food or vomit stayed out. He was breathing on his own, but still had him all hooked up. For 2 weeks they put him into a coma so the bleeding would stop, found out that the bleed was in the middle of his head, behind the nose. The fluid build up and blood was the size of a soft ball. They said his vien just broke open. So everyday we all would be there, massageing his arms and legs, with lotion, curel the $8.00 green bottle. It's worth it. For 2 weeks we massage and we still are, the therephist told us that if we didn't do that his arm would of curled up and his hand would close shut and you wouldn't be able to straighten it, that could only be in my dad case. They put a screen in a vien,which is called an unbrella to stop blood clots, cause when the heart doesn't work right it make blood clots and goes to the brain, so we did that to help him, every decision we make as a family so no one can point the finger at any one. I read all your storys and so many of the same things is going on with my dad. In the ICU room they gave him an G-tube for food cause they said if we did that he wouldn't have so much flam in his throat, they said his lungs are full and he is not strong enough to cough it up himself and the G-tube in his stomach instead of the nose will help him, so we agreed, then the next day they rush to us when we got there and they need to do a trak cause there is to much flam. So we agreed again,3 days later they moved him down stairs which everyone wished us well and said it was a step up. OOOOOOOOOO by the way to get extra good help, bring in the cake 2 times a week for the staff,all 3 shifts, they open up more and tell you more on whats going on.But the floor they put my dad was a cancer wing, he was't touch for 2 1/2 days, then we moved him to the only Care one in Perth Amboy hospital, any of you from NEW JERSEY???? Cause now we are looking for an Acute CAre Facility, Can anyone help me, do you know a good one. This place that dad is in is the step before a rehab. Cause they need to get the trak out, which my dad has not tried to talk, his throat is like chopped liver, the pain of all the times they had to put the sucking tube down his throat. They even tied down his good arm when we wheren't there, cause he was scratching his head with his good hand and pulled the feeding tube out of his nose. He's a very gental man, good man. I'm sorry for writing so much, but its 6 weeks. Just wanted to share with you some things, traks need moist air on them, and the one that was on my dad was cold air and he foze all the time yesterday the respitory girl said he was taken off the oxyen, I said cause he's cold, so she put a heating devise on it, where the bottle of water is, looks like a can of tuna on top. So if anyone out there is freezening from that , they do have heater for the water. My dad has lost 40 pound cause the only give him 40 cal.an hour of food. If you have a G-tube and the number on the machine is 40 or 60 or 80 ask the nurse how much are they eating,My dad is on 40, which is only 900 cal. a day which my dad is used to eating 3000 a day, now I know when it firstwas put in it takes a few day to watch for problem, but 2 weeks, so one of the big shot doctors came in on a weekend and was looking at my dad and I told him I have some goal today, and he said it was the weekend and his ear don't work, so I just laughed and said I will talk louder for you so you can hear me, hahahahaha and we laughed and come to find out he was the head guy who runs the hospital, what luck , so I asked him to give my dad more food. and he gave him 20 more and when I go in tomorrow I will ask for 20 more. So don't be afraid to question all who enter the room what are they doing and what is it for, cause I've learn so much, and I ask alot of question and I ask to watch, I now help the nurses, buy holding my dads hand, and I also tell my dad everything that they are going to do. I tell him to open his eyes and I look in, talk loud, and explain and things go good. we sit with my dad 6 hours a day, my mom can't stay less, its hard after 60 years, I drive 37 mile to get her and then another 10 to the hospital,and back home.Thank God the gas prices are going down. This place is so clean, and do they work on all the pt. only 26 beds, there inside the perth amboy hospital, a great group of well trained people, plus I do bring them cake, I try to get all shifts. Dad has good days that he is awake 6 to 8 hours and days he sleeps all day. They bath him every shift, thats 3 to 4 times a day and rub down with lotion. Its so clean you can see yourself in the floors. This place is the middle step before rehab. but the social worker gave my mom a list of nursing homes with rehab. I don't think any of them are any good, Bayshore ICU told us about JFK in Edison, but that is so far away, we are looking for any other place in Monmouth county new jersey, but if the care is better far away ok that is where he'll go, Just remember everyone, don't give up, talk, feel and spread the love, our touch on them makes all the difference in the world. They can hear us, hear everything that is talked about in front of them. New voices, just remember dont do excerise with there legs when someone is visiting cause they can't tell you that they are imbarassed. and Have everyone talk to them, not around them.  I bring all doctor and nurses to his face to talk to. You see they are still there whether they can respond or not, the doctors told us he would not be able to know us or anything,but he does know us, and answer us with a yes or no shake of the head. My mom even talked norwegian to him and he answer with a nod, and she get her 3 kiss and he moves his lip and neck toward her to do it. I got the family to bring in pictures to cover the wall with and showed him them to see if he knows us, and he does. So get pictures and show them, see if they know who they are, bring ones of them.Look at them and see and remember and you and you alone will see what the doctors and nurses don't. Go to the desk and tell the nurses and doctors, what you see them doing, get it in there report, ask if they are awake at night so if they sleep when your there, its ok, Make your own dairy, and write every day what doctor came in, each cat scan, what they said and each movement, look, etc. Cause all the people who work on you love one doesn't know them the way you do.My goal tomorrow is to get him out of bed and get more food in him, the swallowing test was cancel 5 times cause he is asleep, and they can't wake him, cause he has alway been a heavy sleeper, hahaha So when I get in there tomorrow I hope I have him awake in time for the test, cause my dad loves food. So good night all, Faith and Love and Prayers to all.I hope I can find the time to visit here again. I get 2 days off a week from my dad, my sister and I take turns getting my mom to the hospital. Bye for now

[Tressa999]

You're doing such good things for your dad.  He knows you love him.  It shows.  

I used to live in NJ.  Was once in JFK, but entirely different section and too long ago to be relevant.  My experience with my hasband's stroke (May 28, 2006) has been that each facility has staff of varying quality, so I suspect you'd do best to take the closest good facility to save your strength for the long haul.  You have to watch and listen and ask questions, regardless of whether the facility has a good or bad reputation.  I do feel that if the staff know you care and are watching they give better care than they do to the patient who never has a visitor.  Some of the staff anyway.  

Your dad is so lucky to have children who "rise up and call him blessed".

[lahinva]

I just want to tell you never to give up.  It has taken us four long months, but after a lot of fighting with insurance companies, we finally got my dad into an acute rehab facility.  He was moved from a LTC/rehab facility on last Thursday.  He is now doing approx. 8 hours a day of rehab.  The ins. company didn't want to send him because he is 80 years old.  But like your dad, he was a very active 80 year old until the day of his stroke.  So far he is doing very well with the rehab.  The doctors at the rehab facility hope to have him walking with a cane when he leaves there.  I hope they are right.  So good luck with your dad and remember never give up hope.....

[mfanhawk]

Thanks so much for your kinds words. Today I picked up my mom late cause I was on the computer all night looking for acute care places. My Dad is just keeping his eyes closed, but moved his good hand a little. The social worker gave my mom a list of homes to check out and pick 3, sub-acute nursing/rehab. My dad has been laying in bed since Aug 15 2006, Saturday I got the doctor to order him out of bed to a chair, but for 2 days just sleeping and opens eyes for a few minutes. Glen our physical therapist. told the social worker that he's not able to go to an acute place yet.Ya know before sat. they where just feeding him 40 cal.an hour, now on sat. I got them to increase it to 60 and today I got it up to 80, which now that is 8 can of drink at 237 cal a can equaling 1896 cal, I'm so excited,because he is getting feed double then last week, and I feel he will get stronger and beat this thing. But also  today was so sad, my dads friend came to visit, and there senior club and Atlantic city trip, and big fire house roast beef diner friends, there lives are around good food. So with sad eyes, he looks at my dad, and my dad's  eyes opened with his friends there, and he ask my dad are you hungry, and my dad looked at him so sadly and shook his head YES a few times up and down, it was so sad. We don't talk about food, but I quickly got up and went to the nurses station to mention it again, and she called the doctor and I got another increase, which now since Friday has doubled. So I have another goal for wed. for another 20. So your right about being on top of them. And as soon as his eyes are open wide and bright, I have the order from the doctor that at anytime I want him out of bed in a chair with me there or my sister, they will do it for me,so I hope tomorrow is that day, and tomorrow if nothing goes wrong, his swallowing test, he wants to eat so bad, but I can only pray, its my mom that is very sad and loosing a little faith that he is't going to get the right care and rehab. I will try to talk about tomorrow with an update. (lahinva how is your dad doing today? How long did it take them to get him ready to sit in a chair and not be sleeping? Tressa999 when did your husband start to show that he could sit in a chair awake? Today my dad complained about pain in his back to I was there when the aids cleaned him up and I found a blue cap that belongs to the lines coming out of his neck. So I thought that was what was bothering him and when everyone left I said to him, now you must feel a lot better, and he said no so I asked "back still hurts"?, ya he nodded, so again I rush to the desk and with in min. pain killer,  But your kind words and stories from yesterday helped my mom cause I told her most of the stories at the diner tonight. Well God Bless to you all and family members bye

[lahinva]

My dad is doing better.  In the acute rehab facility he is in therapy from 8:00am til 4:00pm with a few breaks in between.  He seems to be handling it OK.  I think my mom expects to see miracles though.  Yesterday was only his second day there and she expected to see him walk.  He has barely stood in four months, so it is going to take some time.  For about the firsw tow months after the stroke, my dad slept alot.  They did put him in the wheelchair though and he would sleep in there.  We did find that they were giving him vicodin twice a day at the time. Once we had that discontinued, he was much more alert and able to stay awake.  You may want to investigate how much medication they have your dad on.  They seemed to want to keep him drugged and then complain that he was too sleepy to complete the therapy.

Stay involved and question everything they give him......

Good luck and keep me posted....

[mfanhawk]

Greetings all, what a great week! WEll, remember me telling you I got the doctors to encrease his feeding porition from 40 in the feeding tube to 80 and they did, and I wanted my dad out of bed in a chair. Well they did. He his bright eyed himself awake the whole time he is up. For 6days now he went from 900 calories to 2400 with protien added. He has become stronger, awake and with diffect emotions. Which is all great. Yesterday he was not himself, not looking at us. and I finial asked another question and he just looked out the window with a mad face on. I new he was mad about something, and I finial got it and I asked him if he felt sorry for himself, and he shooked his head YES. So I said that is great dad because that is another spot in your brain that is working. He looked at me with a blank stair, which I told him you can feel sorry for yourself all day, but tomorrow we work to get better ok, and he shook, yes. So today my sister was there with him, they worked on 1 1/2 weight and a 3 pounder weight, the kind that runners use, its foamy to squeeze and a strap on it not to fall out of there hands. So we got it in Walmart. Cheap. So I told my family we will get more food in him and get him up from bed and he will recover. So I told dad that you will walk again, I don't know about your arm. You have to work to get your life back I can only help you I can't do it for you. He listened and today he was happy, played tic tack toe, card (2)games of 21 We do think he can't see as well as before, he is noticeing more about what he can't do. But as a family, with my mom and sis and I, we just have to find the right place to put him in from here and I do see a colorful path ahead. The reason my dad slept all the time, he didn't have enough food, he eats with a G-Tube to his stomach. and Has a trach. We gave him a sugar free lollie pop to suck cause we think the sucking will make his muscle in his neck strong, it has tobe sugar free or the sugar will cause bed sores. So be careful, plus we have to watch to see if he coughs after cause it could be going down tohis lungs, so we wait for a cough and she what color it is. My dad even held it himself and then when got tired of it took it out. So once again, we had a great week, very busy. O yea, we did have one bad day, he pulled out his track and  it must of been out for a few hours cause they couldn't getit back in so they had to put a new one in. I thought that was going to screw everything up, but he only fail the swallow test and now the will work on him for 10 days. So we are also working with the lollie pop and no coughing happened, so I keep all the finger and toe crossed, hahahahahahaha lahinve- you should see if you dad is getting enough food and drink (water very important) Cause food is the most important thing to my dad and when he got more he has started to be more like himself, but slower. Good luck and let me know what things they do for him at this acute place. Thanks me

[Tressa999]

My husband was put in a chair about 5 days after his stroke, by a very kind nurse.  He was extremely pleased and more optomistic than before he sat up.  It obviously did him a lot of good to get out of the bed.  Unfortunately, it was difficult to get any nurse but that one to move him to a chair, and she wasn't there again.

[jellybean55]

It is wonderful to read about how your family is supporting your father so well.  I am sure this must be so terrible for your mother.  My parents have been married for 56 years and I can just imagine...

I am sure you know your mother needs a lot of support also.

My friend didn't pass the swallow test for quite a while, but eventually did.  She is now in sub-acute and is struggling to come to grips with what has happened to her.  She also loves food and kept talking about Dairy Queen.  When she was moved to the new facility she was actually cleared to ride in a car instead of an ambulance so they stopped at DQ.  She was too dizzy and sick to her stomach to have anything, but maybe another time.  

How is your father's weight?  The reason they didn't want to take out my friend's feeding tube even after she could eat was that she wasn't taking in enough calories.  She finally proved that she could eat enough (friends tried to bring high calorie drinks she liked) and they took the tube out.

Prayers and good thoughts to you for your father!

[NMcP]

I'm so glad to hear that everyone's loved ones are progressing so well!  My sister had her stroke 7 weeks ago.  She is in an acute care facility.  It's a mixed blessing.  The respiratory therapists and the speech therapists  are great but the nursing staff and the physical therapists suck.  She is supposed to have physical therapy 3 times a week.  She also has braces to strengthen her arms and legs.  They have lost the braces repeatedly and well, it goes downhill from there.  Her colon is working just fine but they don't clean her as often as they could.  Family and friends visit her twice a day.  She is sitting up in a chair now and she passed the swallowing test, but we have no idea when the trach tube may come out or when she can start eating. She is so depressed!

One good thing is she is stable so they want to move her to a rehab facility.  The problem is they want to move her to one that they own (which would be equally crappy).  So mom is fighting tooth and nail to get her into some place where she can thrive.

I can't even begin to address the emotional highs and lows of this.  No one else can begin to understand unless they have gone thru this with a loved one as well.  Now is one of those down times.  We could use all the encouragement we can get!!

[rhonda-lynn]

My mother had a major hemmroaghic stoke on her right side two weeks ago. my father got her to the hospital fast and emergency surgery drained the pressure on her brain and she survived, tho it was touch and go. She remained in icu in an unconcious to semi-conscious state for eight days before she opened her eyes and lucidly began talking to us. Then she was back and forth between delerium and lucidity for a week. Her hallucigenic nightmares began every evening at the same time and continued throughout the night, causing her sleep deprivation. A nurse told me it was a conditioin called 'icu psychosis' and after researching it, found her symptoms were very similar. For anyone who has a loved one who is experiencing delerium, it is a very frightening thing. Rest assured, it will pass. My mother finally got a full nights sleep two nights ago after a week of none and is experiencing greater and greater time of lucidity each day. Talking to her surgeon had been incredibly helpful as well as he felt there was to be a very very long road to recovery given the extent of the hemmorage she suffered. However, she is walking a few steps now and her left side is stronger everyday. Her memroy is completely intact and her conversation and sense of humor is almost entirley restored. he has called her a miracle and just can't believe her progress. It has been an absaloutely terrifying experience but the brain is a wonderful and fascinating thing - never, never give up hope!

[diblaze]

Hi! My grandmother is 70 . She was in a good health before she had a stroke . She had thromboses in the right side of the brain 4 months ago, 1 hour after the stroke she immediately undergone therapy.I live in Kosovo (ex - Yugoslavia) and we had war here 8 years ago,the conditions in public hospitals are very poor and we have not even a single rehab facility here so after 8 days of therapy we took our granny for further rehab in home .She is doing excercises with physio therapist every day (1-2 hours), but she still cannot move at all the left side of the body , and she could not talk .Since here in Kosovo we do not have any Health Insurance at all we are in a very bad situation we can afford to pay the physio therapist but we cannot pay the speech therapist.My parents are divorced , i live with my mother , she is jurist and works as a Head of Human Resources and Menager in The Ministry of Health and what is absurd is that her payment is only 300 Euros a month, can you imagine that , we are in a very bad position because we feel that we cannot give to the granny the treatment she needs , can anyone tell me can we continue without speech and occupational therapy, is it possible for my granny to walk or start talking ,and how long could it take ?!
Thank you
I pray for you all

[andls269]

you must never give up!!! I have read all of the blog posts on here and just wanted to say that as long as yur loved ones get rehab therapy, they will be alright! I had a hemo stroke 2 1/2 months ago and after being in therapy for 6 weeks, i have come a LONG way! I no longer have any "deficits" except for my vision. I have a visual left field cut that seems to contonue to improve. The two things I had going for me were my age of 29 years and my undying motivation to ket better!! I practiced my therapy at all times. My caregivers bought me books similar to the ones that my therapists used on me and I was back to "normal" in 6 weeks. All of the people I was in therapy with were other stroke survivors or brain injury survivors and they all inproved within the time that I shared with them. Therapy is key!! God bless you all!!

[rimarlena]

Hi all, reading your posts has given me hope again, which was snatched by the medical team the last two days.

My mother, 80, suffered a massive hemorage stroke to the left side one week ago. We were told she would not make it and that is the reason they would not send her to ICU. They even discussed with us the option of not reviving her if her heart stopped as her quality of life is diminished. Her right side was completely paralysed and she was unable to speak.

In the last week she has survived. She has regained some movement in her right foot and her face and head are no longer droopy. She still does not look to her right side. She has full movement in left side. She looks at us and seems to recognise us and will follow our instructions of moving her good arm etc... Sometimes she doesn't do things like touch her nose etc... Up until yesterday we were told the next step is rehab, however, yesterday they said she was not responding to instructions and will not gain anything from rehab. This upset us terribly. This morning my sister called and said the dr said she is responsive and followed instructions. We were terribly excited. Today we had a family conference with the whole team and were advised that my mother has considerable damage to her left brain which means she will remain high care and nursing home is the only option. No way will they give her a chance for rehab. They are advising us that it will be very difficult to take her to live with my sister and to be cared for at home.

I am so confused. Sure she is sleepy most of the time, but if you walk in the room and say hi mum, it's me, she opens her eyes and acknowledges you. She may even lift her arm to hold yours (I think purposefully). Today my husband and I visited and I said hi, she opened her eyes, and then I told her Dom my husband was there and she gave the first biggest smile I had seen. She loves my husband, but I think moreso because he is a physiotherapist and I think she believed he was going to get her better. How can this not be responding. It has only been one week. Surely she needs more time. One week for gods sake, and they have given up on her.

We don't know what to do. They say that she will have a peg tube put in before they discharge us. Up to 3 weeks max she can stay. I'm hoping this will buy us some time to show them that she is a good candidate for rehab. She may have even been a good candidate for ICU.

One more thing, now they're thinking with the amount of damage, she may only live for another 3 months.

I don't know what to think or do.

Sorry to go on and thanks for all your stories
Rima

[jody261]

My friend of 64 years had a stoke 4 weeks ago this sunday morning. She has the blank stare also. I think that she does hear us  and does respond to us at times. Her stroke was on the left side. It almost seems hopeless. Now her feeding tube is in her stomache.
She does breathe on her own and seems to be doing ok. She is just there. They do not give us much hope and would have just taken the feeding tube out to let her die if her daughter would have done it. We did not think it was time to give up and just let her die. Is there anyone that has a loved one that had a left side stroke that has been able to participate in therapy?