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LaurieS

Brainstem recovery?

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Hi - my dad suffered a stroke in his brainstem and the left side of his brain on Feb 7 this year. A few days later, it extended further into the brainstem. He can only open his left eye and move his right arm and leg. He is not able to talk. After 10 days in the hospital, he went to skilled care nursing home. A week later he stopped breathing and was sent back to the hospital. They found some bleeding in his brain and that he had suffered another stroke in his vison center and now cannot see to the left with his left eye. During that hospital stay dad was put on a c-pap machine and we were told he wouldn't exhale on his own without it agein. He was moved to the palliative care unit and we all said our goodbyes. When the cpap was removed, dad begain breathing on his own and has been ever since. We left the hospital after another 10 day stay and dad is now in a new nursing home. He has not improved at all and doesn't respond to therapy. He tries to talk to us but just groans come out of his mouth. When he looks at us it is either a look of pain, fear, or nothingness. His agitation level has increased dramatically the past few days and he has to be medicated constantly. He throws his right arm up over his head and slams his right leg on the bed repeatedly. He has several bruises from this but they are not able to restrain him in the nursing home. When he gets like this it takes two of us to hold him down until he finally falls asleep. He has also begun aspirating the food from his feeding tube and now he has pnuemonia (for the second time). The therapists and doctors at the hospital have told us that there is too much damage to dad's brain and that he will never recover. They told us that they think he can hear us and can recognize us but that he can't understand or process what we are saying to him. They also said if he ever gets his speech back, he will only be able to say automatic speech and will never be able to think to answer commands or respond again. I have read many posts on this site of people that have come back from terrible strokes but I wonder if my dad will be able to. We feel like we are living in a nightmare and can't wake up. It is such an awful, helpless feeling to watch him deteriorate day after day. We try to have hope but it is so difficult and we want to be realistic about the situation. I would give anything for my dad to be able to live a meaningful life again but watching him suffer like this is almost unbearable. We can't ever leave him alone because we are afraid that he will choke or fall out of bed and no one will know - so my mom lives at the nursing home during the week (I go over every day after work so she can go home and shower) and me and my brothers take turns staying on the weekends. We are trying to stay positive but it is getting harder and harder. Anyone have any words of wisdom to share?

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Stroke recovery is painfully slow. Any sign of cognitive abilities? I'm sure that he is extremely frustrated and very possibly depressed. Is there a speech therapist that he can see? He definitely needs to try a communication board! At least one with pictures of his needs, ie, hungry, pain, bathroom, etc.

 

Good luck and keep us informed!

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Hi Laurie,

Welcome to the site. My thoughts and prayers go out to all of you. This is a very rough time you are all going through. Your Dad is very early in the recovery process. Don't give up hope!!! There are many individuals whose families were told they would never recover and they have definitely made progress towards leading a productive/meaningful life. Recovery is slow and very rarely is a person 100% of what they were prestroke.

 

You will find alot of support and encouragement here - looking forward to getting to know you.

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I feel so badly for you, your dad and your family. I wish I could say a few magic words and it would be all better again.

 

I think if you check around the site, you will find survivors that came back from the brink, so to speak. You might check out their posts, or even personal message them on what occurred during their recovery.

 

My prayers are with you,

Bob

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A stroke is devastating to the entire family. My husband had a brain-stem stroke a little over 2 years ago. They gave him a 4 - 7 percent chance of survival, just depending on what doctor you spoke to. For a few weeks after the stroke he would thrash around, bruise his arms or legs, seeming angry or confused. He told us later that he was having dreams. That he didn't know why he couldn't just get up and go. One minute he knew he was in the hospital and the next he thought he was somewhere else. Your father may possibly be doing the same thing. He may be confused or trying to communicate to you, or he may not realize what has happened.

 

I spoke to many doctors and nurses and therapists about what to expect. They all said pretty much the same thing. Take one day at a time. That isn't easy for anyone, but that's what you need to do.

 

The doctors, nurses and therapists can only go by what they have experienced or learned through schooling, but they will be the first to tell you that they cannot give you any concrete answers because each patient is different. My husband was one of those 4 - 7 percent that survived. He is walking with a cane, working full-time from home and living a new life. Not the life he was used to, there are many things he can no longer do, but he's doing very well.

 

Never give up hope.

 

Be there for your father. Talk to him. Touch him so that he can feel that you are there. Give him as much stimulation as you can. He knows you are there, and if he can, he will fight his way back to you.

 

Take care, and please let us know how it is going. I know how difficult this can be. I've been there.

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Guest veggie.vampire

That must be so hard. An awful experience for you. I needed life support and it was turned off as doctors thought I'd simply slip away but I surprised them by fighting. 38 at the time, I had relative youth on my side but don't give up hope, stroke recovery as has been said is amazingly slow. Mine was in the brainstem and I spent 2 months only able to blink, no sound at all as all organs used were paralysed. 2 years after my stroke I breath on my own, everything moves albeit very slowly on the right, left side is near normal and I'm improving. Things can get better. If anyone says to you the myth that progress stops at 6 months, don't believe them, it slows not stops.

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Laurie,

 

I am so sorry for this rough time you and your family are going through, but want to encourage you to keep working with your Dad. It sounds like he is frustrated beyond words at his inability to communicate with you.

 

My husband at age 56 suffered a brainstem stroke, was in a coma and on a ventilator for almost 3 weeks, moved to neuro unit for a week, then to rehab for 3.5 months. We were told several times that was as good as he would get, but that was so untrue. The 3.5 months in rehab didn't produce a lot of recovery, but after bringing him home and working with him daily on all therapies and giving him back some sense of normalcy in his life, aside from tubes, needles, probes, machines, etc. he has come a long way. At almost 3 years post-stroke, he has some speech back, is eating all foods by mouth but continues to need his liquids thickened, and is trying to learn to walk again in the swimming pool with the help of a physical therapist.

 

My husband went through being on a ventilator, nose feeding tube, g-tube, tracheostomy, pneumonia, pancreatitis, colitis, partial collapsed lung with fluid build up, a secondary bleed approx. 5 weeks after initial brainstem stroke, staph infection, just to mention a few of his trials and tribulations while in hospital and rehab. He is still a functioning human being, and although he needs much assistance with daily living, he has a good quality of life at home. It's not an easy job caring for his needs, but as opposed to being a widow, I'll take it any day and thumb my nose at the Drs. who said he'd never make it this far.

 

 

Sarah

 

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Thanks to everyone for the words of encouragement and support. It is so hard to see my Dad -the man who raised me and became my friend when I grew up- and most of all, the person I admire the most in this world go through this torture day after day with no progress. I just wonder why God is letting him go through this.

 

In answer to Steve's posting above - we have tried to put a pen in Dad's hand but he can't hold it. We have also tried the communication boards - he looks at them but he doesn't respond. It seems that any movement he has is an uncontrolled movement. Speech therapists have tried to work with him but say until they can get some type of response out of him, they can't do anything. We have even heard the term 'medically futile' used when a doctor described his condition. We still try to interact with him as much as possible. We read the bible and sports page to him, we watch sporting events on tv and tell him what's going on. When he is awake, he just looks around with his good eye and moves his arm and leg in frantic motions.

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I TOTALLY understand what you are going through...my mom had the same thing 5 months ago...went from ICU to hospital to hospital to nursing home...we could not leave her alone and my dad and I took turns staying all day long....it is VERY hard and gets lonely so keep reaching out to others.....let me say...it DOES get better. mom is now back at home and has come further than they expected. She still has a really long way to go but we didn't give up and kept talking to her....your dad can hear you....just make him as comfortable as you can....that's all you can do right now.....it takes TIME ....a long time.

roxy

 

 

 

 

 

 

Hi - my dad suffered a stroke in his brainstem and the left side of his brain on Feb 7 this year. A few days later, it extended further into the brainstem. He can only open his left eye and move his right arm and leg. He is not able to talk. After 10 days in the hospital, he went to skilled care nursing home. A week later he stopped breathing and was sent back to the hospital. They found some bleeding in his brain and that he had suffered another stroke in his vison center and now cannot see to the left with his left eye. During that hospital stay dad was put on a c-pap machine and we were told he wouldn't exhale on his own without it agein. He was moved to the palliative care unit and we all said our goodbyes. When the cpap was removed, dad begain breathing on his own and has been ever since. We left the hospital after another 10 day stay and dad is now in a new nursing home. He has not improved at all and doesn't respond to therapy. He tries to talk to us but just groans come out of his mouth. When he looks at us it is either a look of pain, fear, or nothingness. His agitation level has increased dramatically the past few days and he has to be medicated constantly. He throws his right arm up over his head and slams his right leg on the bed repeatedly. He has several bruises from this but they are not able to restrain him in the nursing home. When he gets like this it takes two of us to hold him down until he finally falls asleep. He has also begun aspirating the food from his feeding tube and now he has pnuemonia (for the second time). The therapists and doctors at the hospital have told us that there is too much damage to dad's brain and that he will never recover. They told us that they think he can hear us and can recognize us but that he can't understand or process what we are saying to him. They also said if he ever gets his speech back, he will only be able to say automatic speech and will never be able to think to answer commands or respond again. I have read many posts on this site of people that have come back from terrible strokes but I wonder if my dad will be able to. We feel like we are living in a nightmare and can't wake up. It is such an awful, helpless feeling to watch him deteriorate day after day. We try to have hope but it is so difficult and we want to be realistic about the situation. I would give anything for my dad to be able to live a meaningful life again but watching him suffer like this is almost unbearable. We can't ever leave him alone because we are afraid that he will choke or fall out of bed and no one will know - so my mom lives at the nursing home during the week (I go over every day after work so she can go home and shower) and me and my brothers take turns staying on the weekends. We are trying to stay positive but it is getting harder and harder. Anyone have any words of wisdom to share?

 

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Laurie, my stroke was in the brainstem. It left me with quadraplegia and unable to speak. I was locked-in for 3 weeks and did not get any movement back for 4 months. I was a total mess for about 3 months.

 

You mentioned that you don't understand why God did this to him. You need to put things in perspective, which I know you will eventually do. I always said, why, Why not me? I was probably the biggest prima dona at work. I felt everything was almost always going my way; beautiful wife, two beautiful girls, house, two cars, etc.

 

I went through a nightmare for first year after my stroke but you know what? I developed a relationship with God and Jesus Christ that I know I never would have had if I remained able-bodied. Sounds like a tough pill to swallow; material things for a relationship with God! I would not give up one second of being able-bodied, again. It did not happen immediately for me but something happened eventually and when it did there was absolutely no looking back. Why me? Why not me?

 

Check out 2Cor 4: 18

 

This scripture has gotten me through all of my trials and tribulations and given me strength.

 

I was in a big fog for that first year. I learned to communicate by looking through a piece of plexiglass with letters on it. I could not hold a pen or move but I could look up for yes, shake my head for know and gaze at letters on that board and spell words. Communication was my biggest frustration and still sometimes is. My speech therapist never gave up on me and was patient with me at all times. I think that most speech therapists understand how important communication is for anybody who cannot talk. What seems fruitless, right now, could lead to some type of small communication in a month. Recovery is litterally this slow, sometimes!

 

There is a volunteer speech therapist that works for our organization, in case you would like to email her. Good luck, my prayers are with you, your family and your dad. Please keep us informed.

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Thank you for the second reply Steve. There are days when I seem to be able to manage and put things in perspective - and there are days when I just cry all day and can barely manage to function. My mom and I are both on anti depressants now so hopefully this will help improve our mindset. Our faith is strong and we continue to pray daily for the strength to get through this.

 

I would be interested to email the speech path you mentioned. I feel that communication is our biggest hurdle right now because we don't know how to help him.

 

Sara & Roxy - i would be interested to know at what point you were able to come home. We have considered bringing my dad home but don't know how we could do it without round the clock help. My dad is a pretty big man - and still very strong on the right side of his body. It takes 2 aides to reposition him each time in the nursing home. And the costs involved with that would be astronomical I'm guessing.

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hi laurie, i too am sorry to hear the stroke demon hit again, but please never give up hope, your dad needs all of his family now, be strong and weather the storm, it will be tough, the doctors always prepare you for the worst, but improvement can come, the brain is an amazing organ. my thoughts and prayers are with you and your family right now. there are many here who have experiened that same type of stroke and can help you.

hostkimmie

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Hi,

I had a brain stem stroke and I am also a nurse.

Mine was not as severe as y father's although I have recovered physically I am not able to work due to short term memory loss.

If y father is breathing on his own and in nursing home with pneumonia due to asperation then you could insist he be sent back to hospital for active treatment,despite what Drs say is his prognosis.

If he asperated into the lungs from a feeding tube then he needs IV therapy to hydrate him.

To prevent bruising you could ask nursing home to pad the rails of the bed,if any to prevent further bruising.

They can be padded with flannel sheets and taped.

Never give up hope no matter what prognosis is given to you.

Let us know what is condition is.

Email me any time you like

Take Care

lorrainelm

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Just an update on my Dad. He was hospitalized this past Tues (3/27) and is being treated for pnuemonia and a UTI. He is doing amazingly well. Since he has been in the hospital, he isn't as agitated and requires a lot less pain and anti-anxiety medicine. He also just looks better in general - his color, he doesn't sweat as much.... It's so strange how he went down hill so fast in the nursing home but is now so much better in the hospital. He is trying to talk to us again - we aren't able to understand what he is saying but he is really trying. We also had an event last night that I couldn't believe happened. Dad cried. He cried like anyone else would cry. He sobbed and had tears coming out of both eyes for about 1/2 hour. He also wiped away his tears with his good hand. To me, these things seem purposeful and mean he is aware to some extent of what is going on. Does anyone have any thoughts on whether or not this is a good sign?

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Laurie,

 

Thank you for the update on your Dad. In my opinion, as I'm surely no expert and the stroke I had was different than the one your Dad experienced, the fact that he did wipe away his tears w/ his good hand sounds purposeful to me. As he is trying to communicate verbally, why not start off with yes/no questions where he blinks his response. Be patient. If he appears calmer in the hospital, he may becoming more aware of his surroundings; another "+" in my opinion. Don't give up hope! As he becomes more aware, he too will be frustrated by what has occurrred. That will in turn be part of his recovery process.

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hi laurie, so glad your dad is doing better, sounds like he's coming around to me, every little thing has got to be an improvement. keep strong and know all of us here are thinking of you. keep us posted.

 

blessings

hostkimmie

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Hi Laurie, glad to hear your dad is doing better. I am glad he is less agitated.

 

From what I have read from other posts here.. UTI's for some reason, seem to affect survivors differently.. with agitation and confusion.

 

Getting antibiotics, being well hydrated could be making a big difference.

 

If your dad can move his right arm maybe you could ask him to hold up one finger for yes and 2 for no.. or some type of code for you.

 

Also maybe cut out some pictures of objects.. maybe he could point to some of the objects you could also include some family photos .

 

Best wishes to you and your family

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Laurie, Yesterday I wrote a reply here and thought I posted it...but it hasn't shown up. Trying again.

 

I had a brainstem stroke 14 yrs. ago, unable to do anything initially include swallowing or talking EXCEPT able to move my left arm and to THINK. Basically, I was unable to get my body to move. I'm wondering if your dad's tears the other day were a genuine expression of his grief over the loss of so much function. Wiping the tears away also sounds like he has deliberate motor skills in the one arm. SO...I'm wondering if someone in your family can design a posterboard to leave in the hospital room with names of family members, doctors' names, alphabet, numbers 0-9, a few choice expletives, when-why-where, yes-no-maybe, today-yesterday-tomorrow words, so that he can point to communicate. My family provided such a thing, held it up close so I could see it, and point. In this way, I was able to communicate. It required lots of patience and I would tire easily, but I really calmed me down because I found it liberating. They would record what I had expressed on an etch-a-sketch and verbally converse with me. It was terrific. Later, they brought me a keyboard to practise on.

 

It's a long road to "recovery", Laurie, and scary for everybody. Best of luck to all of you.

Debbie

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Thanks for all of the suggestions everyone. We have tried to get him to squeeze our had for "yes" and he is able to shake his head "No". The problem is he is not able to give a direct response to a question. He is able to do both of these actions, but cannot respond to a question. My nephew created a posterboard for him with several key things on it but he just stares at it. This is truly the hardest part of all of this - not being able to communicate.

 

Dad is being release from the hospital tomorrow morning and we are taking him to a different nursing home. It's a much cleaner facility than where he was previously and has a much bigger room which will make it easier for my Mom. We would truly love to take him home but he needs 24 hour care and we don't think we could manage it. Maybe someday....

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Laurie,

 

I sincerely hope things go better for your Dad at the new facility. The fact that he's experiencing difficulty in responding to questions may just be part of the recovery process. Don't give up hope - repetition is very important. The posterboard with key items was a great idea. Talking with him, telling him family stories, will hopefully trigger more positive responses.

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Laurie,

 

I just wanted to add that time is on your side. Feb 7 was not very long ago. I had a brainstem stroke ten years ago. I don't remember anything from the first 2 1/2 months. I was in three different hospitals, for a total of 4 months and 3 weeks. It was a year before I could do much of anything. Patience and persistence paid off.

 

I know it is disappointing for it to be taking so long. But, healing from stroke often takes a long time. Keep working at it, have patience. Good luck to your Dad, you and your family. I hope all goes well for you.

 

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Hi Laurie and Everyone,

My Mom also had this Brainstem Stroke on Dec. 12 06, She actually had 2 , one on both sides.It is so hard to understand WHY, it still feels like a nightmare.

She finally came home on April 4th her 67th birthday. She cannot walk or talk, but she does understand.

She still has a feeding tube in and the catheder. She was in perfect shape but we found out that it was a birth defect (her Artery is very narrow).

She also went to a Nursing home/skilled rehab for a few wks and I would make certain that they give him the proper meds. There was a bit of confusion on them not giving her the ritalin that she was on before her transfer to the Nursing home/ skilled rehab facility. We also had a slight problem with them just putting the pills on her tray to take by herself.

She needed them to be crushed first and then we made sure that they gave them to her through the feeding tube or mixed with food.

Just make sure they are doing the same as the hospital. Same meds, bed rails up, when he is in the wheel chair make certain he is straped/ confined it.

My mom seems to lighten up when my kids come around, so kids can bring the mood up. And pets too I have found out.

I will keep your family in my prayers.

God Bless,

Diana

 

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