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What should I expect when my best buddy awakens for the first time tomorrow

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This will be the first time my best buddy of 30 years.

Will be allowed to wake up , the doctors have kept him a sleep since feburary  6th.

 

The day of his first massive stroke , since then he's had a 2nd massive stroke  and massive bleeding and swelling in the left side of his brain.

 

Then the doctors had to remove the left side of his skull.

 

And he turned 53 on February  9th

 

What do I say first , when I walk in.

 

Will he recognize  me , will he be able to understand what's going on.

 

Will he remember  calling me the night before , everything went to hell.

 

Will he remember us fishing together almost every Saturday in the summer months. 

 

I want to be the best caregiver ever , I just dont no where to start , or what to expect tomorrow. 

 

He has also been my partner at work now for a good 25 years

 

 

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Hi, Jerry (I looked your name up on your profile, it feels wrong to call people by usernames)

The first thing you say is "hello" or whatever you would have said in greeting before all this.  He is still who he was before this, although much may also have changed

 

The answer to all your other questions is no one knows what he will remember or what deficits he will have. Some may be obvious from the start, others may take a few weeks or even months to be noticed. The one thing you can be sure of is things will change from what you see on this first waking up.  Don't be alarmed if his first reactions are weeping or anger, he will probably have very little emotional control at first. Don't let him push you away or be embarrassed if this happens it's "normal". Friends who stick through this beast are rare and special. Do encourage him to not give up no matter how bad it looks at first. Be patient and try not to do everything for him, one of the hardest parts of coming back from stroke is the loss of independence and control. No matter how long it takes to communicate let him make as many of the decisions as possible. 
 

I hope that helps you can do this and so can he, but it is !@#$% HARD WORK

-Heather

 

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Thank you heather

My friend's name is shannon.

It's just me and shannon have done everything together for so many years

I am so nervous about tomorrow  ,  shannon has gone thru hell the last couple weeks.

 

The nurse's , have said shannon has been fighting his antieshia. 

Not sure what they meant by that ,  but they also said , he wasn't allowed visitors for the last 2 weeks in icu

 

Because when we came to visit shannon , it was making shannon agitated , but he was on fentanyl to keep him asleep.

 

So how would he no we were there , other than his blood pressure would rise to 200 or better .

 

Then we were asked to leave , not even his wife was allowed to see him the last couple of weeks .

 

But where he likes it or not , I am going to be there for him .

 

As long as it takes

 

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That's the attitude! It's funny how the brain works and it sounds like he wants to wake up (hopefully it's not just because of nasty dreams) and I think that's a good sign although I'm no expert.  Shannon will probably be a groggy and tired even after the anesthetic wears off. brain injury does this. He will need his rest and he needs to not fight that. you sleep crazy amounts in the early days of a brain injury and even years later my mental stamina is much less than it was.

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Heathber is spot on. Go at it slow for Shannon has gone through a lot. The world your friend knew, could very well be different, both physically and mentally and waking up from a deep sleep is a good way to look at this. I don't recognize myself once I wake up or can I understand language.  I need my coffee first 🙂

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Thank you heather

 

You advice made me go from super nervous , to super excited about seeing my buddy shannon today.

 

Shannon is in pretty rough shape , he is totally paralyzed on his right side and can not see out of his right eye

 

His left eye doesn't  look to the right very well  either. 

 

He is unable to try and speak at this time , due to his throat is pretty raw from the breathing tube being in for 2 weeks

 

On the brite side he was able to hold and squeeze my hand with his left hand , and his blood pressure didn't  go over 115 today while I was there .

I repeated to shannon I will be there for him , no matter how long this takes .

 

I even  got shannon to smile briefly !!!!!!

 

There gonna be shipping shannon out to a  long term  rehabilitation center next week .

 

Gonna go see him again tomorrow , keep visiting him as much as possible  .

 

And I will be there next week at his new temporary home when he arrives etc...

 

Once again 

Thank you heather

 

 

 

 

 

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Now maybe , it's time I should work on problem. 

I am a diabetic  , but since shannon had his stroke.

 

I was so upset , I quit taking my meds again

And have been eating everything I am not  supposed  to on purpose 

My blood sugar is back up to 620 this morning , my best is 837.

 

The last couple of years my h1c has been 15.5 and only 14 on my last blood work

 

My doctor keeps telling I am going to collapse and go into a coma

 

Since shannon has had his stroke , it's like

what the sense

 

I should be laying there , not shannon

 

We have talked about this numerous times

 

Shannon always ate right  and always told me , I have to eat everything  in moderation 

 

But if I dont change my ways , I might be able to be there for shannon 

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Yep, jerry, look after yourself.

So glad you are there for Shannon.

 

You are obviously important to each other.

 

To help care for him, you first need to care for you.

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Janelle (GreenQueen) is so right Jerry. You have to care for yourself first before you can take on the heavy step of caring for your friend, Shannon. Getting plenty of rest, eating well, taking your medication all so you can be healthy and strong for when you are there supporting your friend. I think that is what Shannon would want for you too from your posts. He is very lucky to have a friend like you. 🙂 I also wanted to say that when your friend begins living this journey awake...he will be so grateful for your friendship. He may not be able to show it or even say it for now. In fact, like Heather said earlier your friend will probably have little control over his emotions and feelings at first. It can be scary, confusing, frustrating, depressing, exhausting, painful, and so many other things at first. Try not to take things personal and know your friend is experiencing a very unexplained world and holding his hand and just being there for him is tremendous! I'm so happy you elicited a smile and a hand squeeze. He knows you are there and hears you. Remember take good care of yourself Jerry. Be strong for you first so you can be strong for your friend. Keep us posted and know this site is a great place to get more information about strokes, deficits, milestones, caretaking, and a wonderful place to get support for you and your friend. God bless.

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Went saw shannon again

 

The left side of his brain is  still swollen 

 

And he will be getting  a helmet  for his head  because they are not putting a plate back on his skull for a while .

 

Also shannon  cant move his left leg either on command , only thing that works is his left arm and hand .

 

Poor guy

 

 

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Give it time Jerry especially while Shannon has swelling in the brain. Swelling and pressure impinge on the ability of the brain to send and receive signals. Hopefully as the pressure reduces and the tissue heals some functions will return.  It also helps if he keeps trying to use things that don't work yet. going to a rehab facility is great, that means they think he's medically stabilising.

 

In the mean time as the others have said make sure you are looking after you too.  You're no use to Shannon if you are in a diabetic coma. One of the first rules of being a carer. look after the carer first.  as they say on the preflight briefing "fit your own oxygen mask before assisting others."

 

I would also be careful about expressing the "poor guy" message to him. Falling into the "poor me" trap is one of those rabbit holes that can swallow you up. It's important for him to keep a positive outlook if he's going to improve and keep working on his recovery. You both do need to be realistic about expectations but it can be a knife edge juggling act.

 

best wishes to you both

-Heather

 

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Jerry, I am sorry to be chiming in so late, but I've been away on a family emergency and saw your post for the first time only tonight. It will be very hard on Shannon in the weeks and months to come, and I'm so glad that he has a friend that he can count on. He is likely to experience a lot of different emotions- anger, fear, frustration, sadness, shock, anxiety to name just a few. And he's going to have lots of questions. Perhaps the kindest thing that you can do is to bring him to Strokenet, where you can type his posts for him, and read comments back to him. Or, just read different posts to him, especially if they concern a problem he's having or a question that he has.  By exposing him to Strokenet, at least he'll know that there are others like him, going through the same things. Good luck, you two, and keep us posted, Becky

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tell him it will take 3 years to properly understand what has happened to him and get in place all supports he will need

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Update on shannon

 

It's a month  now since  , shannon entered the hospital having a mini stroke ..

 

Followed by his 2 massive strokes  just days later..

 

He is now out of ICU  , but still on the ventilator  and feeding tube in his stomach  ..

 

They got shannon standing up on his feet last week  , well with the help  of 3 orderlies..

 

He looks a lot better now , even the sagging  of the right side of his face has disappeared 

 

Although he is still paralyzed on his right side , and the left side of his brain is still swollen a

little ..

 

And he can barely  hear out of his right ear , and being he had no hearing in his left ear before all this started ..

 

I got him a writing board  , so we are able to print questions on it..

 

He's able to recognize  us  and says he feels better now , he also was able to write his last name out with his left hand .. I was impressed 

 

Now the bad news , our union insurance company  has denied  him for long term care , I cant not believe it !!!!!!!!!!!!!

 

And in a strange twist , me and shannon built the hospital , that he is at

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That all sounds very positive. it's a great start.

 

So now you start the real fight for his life, the argument with the insurance company about what he should be getting!  I believe there are ways to change their minds and I'll leave the locals to help you on that one but my first question would be why? as in get them to explain in writing all the details of why they think he isn't eligible?  and make sure it's a doctor not an administrator making that decision.

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Yes I too am a day late and several dollars short

Sorry to hear about the Strokes just have him work on things he can do everyday. You have to do something about your Diabetes and  A1C, see your friend ........you don't want to end up like that .............. well there is only person that can fix that....... YOU

I'm puzzled but the union denied him treatment ????????, how can his medical insurance deny him, what union does he belong to

Sounds like there might be a problem there

Hope it all works out

Ed 

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Those dang insurance and long term care issues!!! They throw sand in your face when you need them or they pull you out of water,toss your coin. I had to appeal repeatedly and when I lawyered up got a hearing then the judge saw me and saw reality.

I pray he has plenty of supportive friends to pray and one special one to send gift boxes over the years like mine who gave me my drawer of fuzzy socks!

Be yourself for him and let him be the new version as long as it takes to reemerge or rewrite, or whatever. Share what he gives out,understand what is a mystery,love.

You will make the difference. We know.

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Jerry I am disturbed yet again at some of the decisions made around stroke survivors and their recovery efforts. Especially at a time when you need those things on your side more than ever. I say fight...appeal...don't give up or just blindly accept craziness. Pass that along to Shannon's caretakers. If I find more helpful advice I'll add it here. Pam said it best. Give him you and accept him and his needs on a daily basis (it changes a lot...he may need support from you one way today and a different way tomorrow...just be you).

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Insurance companies are the worst.  Mine decided after a year that I was "cured" because I could walk unaided and could even run (stroke affected memory and cognition, limited physical impact).  We hit them with a whole pile of medical reports and they backed down.  They grumble and groan every year, and threaten, but so far they haven't tried that trick again.

 

If I were in your position, I'd ask them for the reasons that they are refusing long-term care.  Then you'll know what to rip apart.

 

For example, in my case it was my family doctor's notes saying that I was feeling cheerful and was able to run again that they used as an excuse.  We hit them with reports about the cognitive and vision impact, and the effect that that would have on my working life going forward.  They changed their minds and re-instated benefits (without having to resort to lawyers).

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Oh wow. Terrible. 

What a thing to have to go through. 

Insurance companies have no compassion or understanding. 

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Compassion is not their business  Their job is to make a profit for their shareholders, in a way that does not leave them wide open to lawsuits and bad publicity.  My condition is such that they know that they cannot get away with drop payouts, but I guess it never hurts them to try it on.  There are probably a bunch of people who cannot get the right reports, or don't understand the insurance requests, or just give up.  Each one of those pushed their share price up.

 

Welcome to the world of capitalism and the profit motive :-).

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Paul, our bad health issues equates to another personal jet or beachfront holiday house ...right?

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Not really.  The prospect of our bad health gives them the holiday house, because we pay them.  The fact of our bad health means that they cannot buy a second (or third) holiday house, and that's why they try to convince us that we are actually all fixed.

 

My insurers have just informed me that having reviewed all my doctors' records, they have magnanimously decided that I can keep getting benefits for the next year.  I should feel grateful that I don't have to do battle with them, instead I feel *beep* that I stress about this every year.  At least this year they did it all by themselves, without needing me to get supporting letters from every dog and his flea, and go through yet another battery of depressing tests to prove that my brain is STILL broken and that I STILL cannot make new memories (and am missing a bunch of old ones).

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I'm glad it wasn't the usual stress for you this time round.

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My wife of 34 years is Shannon also.you and he are lucky to have strong partners.

it has made all the difference for me.i encourage you to continue to be supportive and give him someone to lean on who understands. But for goodness sake get control of your blood sugar.

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