Brainstem Stroke patient


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Thank you to those who encouraged me yesterday. I will pass it on to my sister. I know he is getting better.

Last night my sister told me that his arms feel warmer, like she can feel the blood coarsing through his veins...

she can feel the blood pulsing through his arms and hands. His limbs feels warmer, and yet he does not have

a fever. That sounds encouraging to me. Thanks again to all of you. Jocelyn (sisternlaw)

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Hello sister in law

 

My friend Mick was in a coma at the Queens Medical Centre in Nottingham for almost 6 months, he now walks with a couple of sticks and is no slower in mind than he ever was. I was in rehab with him and now live near him.

 

Do not give up hope

 

Mike

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Dear Jocelyn,

 

Obviously your sister is an extremely strong-willed woman. I would like you to encourage her to allow others to assist her more, however. Your bother-in-law needs so much care, as time goes on your sister becomes more susceptible to health issues herself. Where would he be if she is gone? I have been my husband's 24/7 caregiver since 10/25/04 and I am speaking from experience. (He has suffered 2 major strokes, a hemmoragic and an ischemic stroke - each leaving him with pretty major difficulties.) Our physical health, as caregivers, is not only at risk - our emotional health weakens with time. I felt I was the only person capable of caring for my husband's needs properly. He has had many hospitalizations since that stroke and at one time I spent every night at the hospital since I didn't trust the employees to care for him properly. In many ways I still feel justified in my opinions since, after all, the care I give him is one on one and I don't have 4 or 5 people to care for. There comes a time, however when we just wear out. My husband is now in a Skilled Nursing/Rehab facility for the 3rd time. He was in this facility last year and it was comforting for me to be remembered yesterday when Bill was admitted. I have reviewed the possible facilities suggested by the hospital Case Manager and have been extremely choosey.

 

Bill has not wanted anyone other than me to care for him previously. He is better now, however, since in some ways I think he does know how tired I am. Three years of doing all the caretaking without allowing anyone else to help me has taken its toll - I'm not the only caregiver this has happened to. It's called caregiver burn-out. Of course there is much shame associated with it, but it's a fact of life. I love my husband and for this time I have accepted that my caregiving responsiblities have changed somewhat. I will allow others to provide most of the hands on attention and I will concentrate on loving him and taking care of the background issues. My hope is he can become strong enough to come home once more. In the meantime I will care for him in the very best way I can - just like your sister.

 

I know you sister has received this advice from the home health nurses. Yes, she gets out for a few hours at a time - but even then I'm sure she is running to the grocery store or some other errands and isn't even getting rest then. I'd suggest you look into any agencies in the area that may have a volunteer program set up since I do know the financial constraints we find ourselves in. It took me 2 years to even look into that!! It's important for us to listen to other caregivers/spouses who may have some advice to help us avoid the pitfalls others have encountered.

 

Warmly,

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  • 2 weeks later...

Thank you to arogers and mikisteph for your encouragement. It is good to know that someone else came out of a

coma after six months...and still was mentally sound. I will tell my sister. I know it will give her hope.

At this point, hope is fading fast.

 

and to arogers...thank you also for your concern for my sisters well being. I know you speak from experience.

I know she is getting very discouraged as well as exhausted. She finds herself caught between Hope in God ...and

anger toward Him. Knowing that he is all powerful, and yet allowing this to continue...in her mind it is as though he

has no mercy on her, and is pushing her way past her limits. On other days she is hopeful and honestly believes

that David will be waking up soon. .....We continue to pray...and plead with God ... and grieve in our hearts each day.

Not knowing if David will come back to us...and not being able to let him go, because he's still alive.

It is torment. But please know that your words and the time you take to encourage is so helpful.

It will get us through another day. Thank you...sincerely Jocelyn sisternlaw

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Dear Jocelyn,

 

Oh, how familiar are your sister in law's feelings. Hope, faith and anger......those feelings we have toward the One we call God. I've had those feelings myself many times. It's called the process of acceptance. I find it so interesting when I get angry because I feel He is putting me through much more than I deserve. First, when I say "why me God?" I stop myself and say "why not?" What makes me think I should be spared the hurt, trials, fears that those around me have? I guess when I was a child I asked the same thing of my Dad - why do I have to do the dishes? Maybe that isn't a good analogy - but sometimes I have to get real concrete when I think about my feelings toward God's care.

 

When I think about all that I go through I am now at a point where I can say I have the tools to help me handle the situation. Whether or not I use those tools is the choice I make. With my husband, when I know how to get help for him, but I feel I am the only one who can properly care for him so I refuse it - that isn't God's fault. That's a choice I make. When I make that choice I need to understand I will live with the consequences.

 

It has taken me a long time to understand that I have much more control over my choices than I want to admit. Everybody is different and everybody comes to acceptance through different experiences. My suggestion is that you lovingly support your sister in law and make suggestions that will allow her to take care of herself and your brother.

 

Warm wishes,

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  • 2 weeks later...

Thanks for all the new messages. I did share them with my sister. She was encouraged to know that 5-6 months

in a coma is not so unusual. One new thing...a couple of times now, when David is being turned he has opened his

right eye half way....then closed it again. He did this twice one day last week... But not again yet. My sister keeps

watching for it again. Still it is something new. One more minute thing. Sometimes when she needs David to

raise up so that she can pull the sheet out from under him or move it to another spot...he will feel her tugging and

lift himself up on his own without her saying anything.......cool huh?

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jocelyn, that is wonderful news. david is trying to come back, when the brain is ready, he'll probably just pop right up in bed,lol. keep the hope alive and remain strong even on the bad days. i will continue to pray for your family and i send lots of (((((hugs))))) to all of your family.

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  • 1 month later...

Hi All....have any of you heard of or know of someone who has tried the Ambian experiment with someone in a coma?

I have seen lots of stuff on line...about a featured segment on ABC where a coma patient was given Ambian to help

him sleep and he woke 15 minutes after taking it....I just typed in "Ambian given to coma patient" into google and the

ABC piece came up. Also on the website Compassionate Health Network click on Brain death portion. Lots of interesting stories of people who have tried Ambian and similar drugs on their coma patients, with positive results.

My sister and I are a not sure about it............ Anyone?

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jocelyn. i have not heard of the ambien experiment. but i would talk to his doctor about it first. how ironic to give a sleeping medication to a coma patient. that is amazing. i hope you can get the answers you need about it. wouldn't that be wonderful if it worked with david. please keep us informed about what you find out and if you try it on david. good luck and best wishes.

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hy sister-inlaw:

 

David has age to his side, but to road of recovery will be very slow and sometimes very frustrating too, but you can still have wonderful life post stroke. I personally feel faith& family support plays big part in recovery.

 

Asha

 

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Hi Jocelyn,

When I had my bleed, (Brainstem) I was given about 24 hrs; family gathered from around the US and Canada. Apparently I was interacting with people, but I don't remember. I can't give you any insight to a coma - sorry. What I can "say" is DON'T GIVE UP!! Get 3rd, 4th opinions if you need to. I was on a respirator, had a feeding tube, a tracheostemy; I had to learn how to walk, talk, write, and even eat again. I've read where people who are "locked in" from a stroke, (All that can be moved are the eyes.) have recovered; it is possible. Support of family, friends, and sites like this one is key.

 

Take care!!

Susan

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sisterinlaw,

 

High my name is vicki my son severed a major brain stem stroke on 10-5-06. The doctors told me he would never get any better. He was in a coma for 30 days and when he woke up he also had the fixed eye syndrome, had a trac. feeding tube, and so on the doctors wanted me to let him go, but I knew in my heart that him was still with me. The past year I have worked three hours a day 6 days a week with my son and also fought for him when people tried to tell me to let him go. Three monthes ago my son started coming back. He started feeding himself granted I have to put the food on the spoon but he is taking it to his mouth and eating it, he is also picking up things and taking things from my hands. I got all of this on video because no one would belevie me about his progress and even when the doctors saw what he could do they were impressed but offered no help for getting him more rehab. I spent the last month reseching rehabs for him and finally my prayers got answered the children's institute has approved him the doctor seen the video and went to the board on his behave since he is 22 years old and they only work with children up to 21 years she showed them the video and he got excepted. The doctor asked why his other doctors didn't do anything and I told her that they didn't feel he was ready for rehab she didn't agree. Although I do have to wait a month for an opening at childrens I know that god has answered my prayers. You have to make sure david is exercised consistly or he will contract my son is all cribled up and is only able to work his left arm because he wasn't getting enough from the nursing home and I even exercisered him for two hours a day it's alot of work but he has two get as much as possible. Don't give up on David or prayer because when you might think all hope is gone a mircle may appear and save all hope. You and your family our in my prayers. Tell David to be strong he has a long road to travel and it will be hard but it's not impossible when there our people who love him and our waiting for him to get better. God bless

 

Worried

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Thank you "worried". Sounds like you don't have to worry so much anymore. God is with you.

Thanks so much for the encouragement. David has been in a coma for 7 months and two weeks.

His eyes are closed. He does move them now though when his eyelid is held open for him.

We are still praying every day for his recovery. Thanks again

 

Also ....to those whom I asked about the Ambian....we have decided to wait on that. My sister is concerned that if

the pill worked and we woke him up, that perhaps his brain is not yet ready. We don't want him to wake up at a time

when he would not wake up naturally. It's a hard decision. We may change our mind and try it if it doesn't happen

soon. And even then there is no guarentee that it will work. We will keep you posted.

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  • 3 months later...

Joycelyn,

 

I am fairly new to this site, but I have read your past posts from the beginning. I have also wondered about Ambian. I will be praying for David and your family. How is your sister holding up? I am the primary caregiver for my mother who had a stroke in Feb 07. She needs care 24/7 and I did it alone for the first 6 months. I now have help for a couple of hours twice a week. My mom is conscious but has severe aphasia and I have to change her, turn her in bed, bathe her, etc. I know what your sister is going through. 24 hr care is exhausting. Please give her a hug from a fellow caregiver. God bless you for being so supportive of them.

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