Welcome, Guest!

By registering with us, you'll be able to discuss, share and private message with other members of our community.
Maria R.

My story up to now - Maria

Recommended Posts

Hi, 

 

I'm in my coffee break miles away from where my fiance is trying to start his rehab after spending one month in intensive care after a severe Aneurysm stroke. Devastated and not knowing what to expect, and to all this you have to add the distance (we live in different continents) which means I receive the news I can get from his family.

 

I spent with him the second week after the episode and it's been the worst time of my life, but I had to go back to my work (can't afford to leave work for some time) and he can't even remember me so I'm terrified of what awaits us.

 

I can only think that at least if he doesn't remember us he can't worry about it, but the uncertainty of the whole process is disheartening, and I keep worrying if he is aware of what is going on, or what will happen now. And all the news I find only break me a little bit more so any insight would be helpful, thanks

  • Like 2

Share this post


Link to post
Share on other sites

Hi Maria

 

So sorry that you are in this situation.  You don't say how old your fiance is or what he was doing when he had his aneurysm.  Things like this factor in recovery but that said, we all recover at different rates and all have different issues after.  Unfortunately this is no exact science with recovery after SAH and it is very much an individual thing.

 

Memory is very much a problem following an SAH but there are a lot of factors that contribute to this - again everyone's are different; location of aneurysm, severity of bleed etc.

 

Please do keep us updated and keep in touch x

  • Like 3

Share this post


Link to post
Share on other sites

Hi Maria,

 

I send prayers for you and your fiancé.  Recovery takes time and patience, and I know the distance will make it harder.  I am so hopeful that his memory of you will return.  The brain is amazing and will work hard to repair itself.  So I am hopeful.  I know that for the first few days after my NASAH, I thought it was 20 years earlier in time.  I have no memory of several days, but the rest came back, though its not as good as I wish it was.

 

Best wishes for you both as you go though this.

 

Chris

  • Like 3

Share this post


Link to post
Share on other sites

Thank you Skippy and Chris G. for your comments, I'm lost right now and anything helps to get through this. Skippy my fiancé had just had dinner with family when he had the aneurysm and he is older than me in his sixties (I had no idea it all counted because I have found out about people of different ages and in different situations)..

 

He was starting his rehab today and I can only hope it isn't very painful and that it can help him (he is a fighter but I don't think it matters much in this situation) x

  • Like 2

Share this post


Link to post
Share on other sites

Maria, if your fiancée is a fighter, fight he will. A positive attitude can only help him to make the best recovery possible.

  • Like 3

Share this post


Link to post
Share on other sites

Hi Maria,

So sorry that your fiance has had SAH and that you can't be with him at the moment.

 

It is good that his family are keeping you up to date with his progress, in a situation like this i think you have to put your faith in the doctor's who are looking after him, as Skippy said recovery is different in everyone and it takes time for the body and the brain to recover after such trauma.

 

You have come to the right place for help and advice, you will find a lot of helpful information here.

 

I hope things begin to improve for your fiance very soon.

 

Sending best wishes to you both,

Love

Michelle xx 

  • Like 2

Share this post


Link to post
Share on other sites

Hello Maria...welcome to BTG.  So glad you found the site so early.

 

I can understand how traumatic it must be for you to have seen your fiancé in ITU a week after his bleed, then having to leave him and return to your work the week after ....... not knowing how he was going to pull through this life threatening trauma to his brain.

You understandably must be feeling helpless being so far away, unable to give him your close support.

 

Having spent four weeks in ITU, it is so early in his journey to make any accurate assessment about his recovery. Do you know the extent of his current issues? You mention his memory..... it is quite common that his memory will be affected in these weeks immediately following his SAH. 

 

Many do not recall the weeks in ITU.  My wife spent one week in ITU and has no recall of the two weeks following her SAH.  Everyone`s memory recovery is different. Many recover well although short term memory recall can continue to be a problem.  Members have various coping strategies to help them remember.

 

Do take time to read the Forum stories of how our members have been challenged by SAH on their road to rebuilding their lives. You will discover much information that will prepare you for the days ahead.

 

Please continue to keep us advised of your fiancé`s progress, and don`t hesitate to ask for help and guidance. While we do not offer medical advice, you will receive much valuable support from members. Some like you are in the early weeks, and others have 5, 10 and over fifteen years of dealing with SAH and it`s challenges.

 

Take care.... as already mentioned...it is good that he is a fighter. A positive attitude will help him greatly.

 

 

Subs

 

  • Like 1

Share this post


Link to post
Share on other sites

Hi Maria

 

So sorry to hear about your fiance and his SAH, it must be so hard not being with him while he is going through this.

 

I am sure everyone in rehab will be working hard to get him back to where he was before. Total recovery may not be possible but he has survived this far and is a fighter so has a lot in his favour. Memory is a strange thing, I think we all have 'memories' of things we said and did while in our early days. I had memory issues, imagined things hadn't happened and forgot things that had.

 

Keep strong and let us know how he gets on, be thinking of you.

 

Clare xx

  • Like 1

Share this post


Link to post
Share on other sites

Hi Maria 

 

The first few few weeks after a bleed are very hard on everyone and as everyone has already said each case is unique. I didn't really know anything at first once I came round or so I am told and i have absolutely no memory of my time in ICU which includes any visitors and I had lots.

 

That was one of the many good reasons that my kids didn't visit until I was stepped down in care level and my memory had improved as mum not knowing them would have been too scary but it's still hard for adults too when that happens.. 

 

Pinning up pictures was very helpful to me then but in the weeks , months and even years since I  had to piece things back together as my stamina and brain allowed . It was a little like slowly going round the house and flicking the lights on to see which works and which didn't.

 

Some might never come back on and then you just have to try and find a new way of 'lighting' that situation but it's a regain and adjust and adapt process for our brains which everyone travels at differing speeds and levels depending on the extent of the bleed and their individual circumstances.. Sometimes fast, sometimes slow but still  we all go through it. 

 

His rehab will be designed to boost his recovery , learn techniques and help him take stock of where the regains can be made but it's tiring and progress is not always  as fast as others might wish and Also frustrating to those going through it. 

 

Send him positive vibes in your quiet time , write to him each day little updates , old fashioned maybe but a nice way to encourage him until you can next visit and see progress yourself. 

  • Like 2

Share this post


Link to post
Share on other sites

Thanks all for your messages.

 

Chelle C I agree with you I feel I am in the right place for support, thanks for the good wishes

Thanks Clare M and Louise too! 

 

Subzero you say it's too early to make accurate assessments about my fiance's recovery, and I'm really holding onto that thought and to what you all say that every person is different because the neurologist says he won't recover completely, that he won't be able to be independent again and that is heartbreaking devastating.. So yes I'm taking the little time I have to check all the stories and posts. Thanks for your insight

 

And Daffodil can you believe I left a couple of pictures of us when I left the hospital? And even knowing that he won't get what it means I made a scrap album of significant pictures of our two years story and sent it with a short letter.. It's his be next week.. If I knew he will be able to read again I would send notes every day (I do it to his phone but it's locked). 

 

Thanks again to all.

  • Like 3

Share this post


Link to post
Share on other sites

Hi Maria,

 

It is still very early days in the recovery journey.  Your fiancé has a long way to go.  However, there are a number of people on this support group who have been on similar journeys.

 

There are those who had next to nothing wrong with them after surgery and there are those who have had a much tougher time and been told they can't do things but then did them anyway, albeit after some time had elapsed.

 

To look at me, you would think there was nothing wrong with me.  However, after my SAH, I had to be taught to walk again, and to speak again, as I had a very limited vocabulary in the early days. I had to be shown how to make a piece of toast, how to put the kettle on and so forth. 

 

I didn't recognise my family or my fiancée, now wife.  I told one of my nurses she was beautiful and asked her out - right in front of my fiancée. It might sound funny to some, but it was nothing of the kind.  I was very, very ill.

 

I didn't know what I was doing.

 

The brain plays tricks with you when it has been interfered with, and you can't control it.  In time, however, it started re-connecting and almost all my functions and abilities came back to me - save for my short term memory.  Even that, though, is not as bad as it was at first.

 

Time and patience are the biggest healers.  You can jog it along by the use of photos and diaries and by constantly getting people to talk to him.

 

Over time, he will make progress.  It won't be easy, indeed there may be times that will make you cry.  His progress will not be as fast as you might like, but it will be progress.  This is not a race.  he has to go at his own pace but it will be a slower pace.  He has to be given the space and time, without pressure, to make the required steps, often you will see these as baby steps.  As long as they are in a forwards direction, that doesn't matter a jot.

 

Six and a half years since my SAH.  It took me a long time to 'get there.'  probably 2.5 - 3 years to be back to almost normal.

 

Be there for him and you will reap the rewards, I'm sure.

 

I wish you well.

 

Macca

  • Like 4

Share this post


Link to post
Share on other sites

You're welcome Maria, please just remember, it's his progress, it's his pace, not the one's you want him to go at - but his, that are important.

 

Once you accept that, his difficulties are much more within your gift to accept and deal with.

 

If you get frustrated at the slowness of it all, you will only upset yourself and that emotion is wasted.  Much better if you channel your efforts into helping him in the best ways you can, one step at a time.

 

If you want support, that's what we 're here for, please just ask, don't sit there letting your emotions and your imagination run away with you.  Don't bottle it up, share your feelings and we will do our best to help.

  • Like 2

Share this post


Link to post
Share on other sites

I get what you mean Macca and I really appreciate it, because I'm here looking for support not to let myself drown with all this pain, but also to learn the ways to better help him, and I'll make sure I tell his family and friends about the pace, that is his timing and not our wills and hopes what count.

 

And I'll try to remember to ask for help when I despair (yes, the voices inside that talk about all the possibilities are difficult to silence), thanks again 

  • Like 2

Share this post


Link to post
Share on other sites

Hi Maria,

 

Bit late coming in on this so apologies,

 

I found keeping my spirits high once I awoke and knew what had happened to me  was the best medicine.

Hubby took me out for a coffee and a cake which made me feel like I was alive again.

 

On went the weight and I am just dieting from it all. 

 

But in the first instance I never knew a thing about what happened to me.  Give him time and he will get better.

 

Good Luck

Win  xxxx

Share this post


Link to post
Share on other sites

No apologies needed Win, and thank you for your reply. 

I'm working on the one day at a time everyone is telling me,  but they tell me my fiance isn't aware of much right now, still struggling with the feeding and the speech and not recognizing people.

 

So on my part I'm struggling with the coping part, and I don't see a way out right now with this news (guess lack of sleep doesn't help either). So I thank you for taking the time to answer xx

  • Like 1

Share this post


Link to post
Share on other sites

My Daughter saw a yoghurt pot on the side of my bed and she asked them "Should this be here?" and they told her it was for me.

 

It made my Daughter so happy,  so keep an eye open for the "Yoghurt pot" .xx

 

Wishing you well and keep chin up xxxx

 

Love

Win xxxxx

  • Like 1

Share this post


Link to post
Share on other sites

Posted on behalf of Maria -moved from the articles section

 

Two months and a half afterwards, and it's as tough as it was

It's been a while since my last and first post, but these days and weeks have been very tough to go through, struggling to find the strength to wake up and deal with another day, while dreading the news on my fiancé evolution. After two months and a half since his stroke he is in a post acute rehab center, he remembers his family when he sees them, he remembers me when he sees a pic and he says how could he forget who I am when I call him. But I don't believe much of he says, he sounds he is saying it to make me feel better, and he definitely isn't aware of what us meant in his life. And what is excruciating is the fact that he still thinks he is at his office, or some place to have a check out before going back to work.. He is unable to get where he spends his days. And the thought that he might never get that and move from there to some kind of life makes every day heartbreaking. And even though I try to keep in mind all the suggestions and advice you gave me,  I fail to see much hope.

 

Share this post


Link to post
Share on other sites

I will continue to send prayers. Amazing things can happen with time. Please keep hope alive. 

 

Chris

  • Like 2

Share this post


Link to post
Share on other sites

Yes please keep the hope as there is hope there are so many others who haven't gotten as far as Rehab we owe it to them to fight (someone told me that in my darkest hours and its one of the few things that has stuck)

 

When you don't believe him as you say remember he has a broken brain at the moment and that's why he's saying all those things with hard work on his part and support from you this will get better.

 

I too didn't know who I was, where I was, or when people told me things in a flash I'd forget and ask the same question again, and again, that was all a long time ago now it has improved heaps...

 

sending you best wishes..

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now