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Maria R.

My story up to now - Maria

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Thank you Louise, these insights are the few things that help me go through these days. Everything I read or been told by doctors feels like they don't refer to the one I love, the man I'm trying to help as best as I can from the distance, missing him every day in a situation where I am lost.

Does anyone know if it's good for him if I keep trying to talk to him even if he forgets? (I call him every day, doesn't mean I can always talk with him, but I do) Or it may be a cause of stress? I wouldn't  want that under any circumstance,

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Hi Maria

 

Keep talking to him I am sure it is good for him. My memory was very poor initially and repetition is the way I learn now so by keeping on talking to him it will reinforce the messages you are sending.

 

Remember it is still really early days for him, be patient. When are you hoping to see him?

 

Clare xx

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Thank you very much Claire, will work on that then. 

I can't take holidays until the summer. Took some days to be with him when it happened and now I'm waiting to know if he is going to stay where he is for a while to check when I can take some time (and what I can afford too). Work issues..

Distance ads difficulty to a very tough situation,

Maria xx

 

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Maria

 

im sorry I seemed to have missed your posts totally and I apologise to you and your partner.

 

I know how you feel, lost desolate and not knowing what to do but as many have said  previously and as someone who has been through the mill , time is a great healer. Rehab takes so so much out of the person and it is a very slow process. I think as long as he is making progress he could be in rehab for four to six months I think  but surprises' do come .. One day at a time but he will surprise you when you don't expect it and those days will light you up so much and it wont be such a horrible feeling  being so far away from him.  I know a certain person who went to rehab a bit later than I wanted and she blew me away. You know your partner,  he is a fighter have faith that he will make as much progress as he can.in his own time. There will be sunlight soon for both of you,  take a deep breath rant and rave on here and then take another deep breath and carry on with hope in your heart. Put the misgivings under a rock and look forward to a happy future,  its hard but I do believe you can do it,  hugs and cuddles to you both

 

paul     

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Many many thanks for your words Paul (please no apologies needed, the support I have had in this forum has meant more than any of the good will words I have heard these last two and a half months). I promise you I work hard to keep faith and hope up, but every day is very very tough, all the news are a trial and some days I can handle it better than others, and this last week has been a tough one after I thought I was going out of this deep well. They say it may take him one year, or two, or more.. And say that every person is different but he has had a very serious stroke that kills half of the people. And that is devastating.

I'll try to breathe and breathe again (I have started meditation as someone suggested as a way to help me through it all so I'm more useful to him too) and read all your comments when I feel at worst.

Maria x

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Maria,

 

Yes, it is important to keep talking to him.  You take in more than you can acknowledge and it is surprising what he will remember even when there is no initial response.  If you struggle to keep talking because there is no visible interaction, then read newspaper articles to him to let him know what is going on in the world. I know from bitter experience.

 

These are difficult times for both of you, but it is important to keep plugging away until you make the breakthrough and beyond.

 

The journey is tougher for some than others, but the important thing is to keep going, however tiresome it may seem.

 

Somebody on here once said "Every journey starts with a single step." 

 

Well, every journey ends with one too.  Your job is to make sure you take all the steps in between, to enable you to make that final step.  Nobody said it will be easy, but it is absolutely necessary, to give him the best chance of recovery.  Never doubt that - or that we will support you every step of the way in whatever way we can.

 

All your problems away from this are miniscule by comparison.  This kind of event puts life into perspective and revises the context in which you look at things.  Stay strong, keep your chin up and keep supporting in the way you are doing.  Make sure you get enough sleep and eat, drink and rest well.  Your man needs you at your best and your strongest, not your weakest.  You cannot allow yourself to be dragged down by it all because that will help no-one.  It's tough, and life has dealt you a blow, but grit your teeth, you can do it if you put your mind to it.  We are here anytime you want to let things out.

 

To help those weaker than yourself, you need to retain your strength and fortitude.

 

I wish you both well.

 

Macca

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Thank you very much Macca, for taking the time to write and for the needed advice I get from your words. I'm taking note of everything and they are helping me to collect the strength to keep working on this journey we are going through, my fiancé and me. 

Your support is really appreciated (despite the best intentions of my family and friends they don't get the whole of what I'm dealing with which makes me feel on my own sometimes).

Maria.

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You're welcome.  Don't forget to come back to us if you want to discuss or just get things off your chest.  You're not alone now.  We are just a click away.

 

I'm sure your family and friends mean well but they don't have the experience that we do of SAH.

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Thanks Macca. Because I already need help: from anyone who is familiar with the US health system,. They just told me they are moving my fiancé to a nursing center... What does it mean? That they are giving up on him? That they have decided or the insurance company that they won't do anything else?

This is very distressing,  

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Maria

 

im not sure about the usa way of treating patients  is it a nursing home or is it a centre where further input is given can you ask his family over there what the plan is for your fella it could be where rehab is more readily available along with nursing care I hope so which is a good thing and if you can get the number of where he being sent to you can ask  pain in the bum time again but don't get despondent yet hugs and cuddles

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Maria,

 

I was in cuckoo land for a long time, I was moved from London Hospital Kings College to Maidstone and was sent home with hydrocephalus. (Water on the brain)

 

The Maidstone OT's said to my Hubby and Daughter  "Grieve for your Wife and Mum as she will never be who she once was" and they gave me a balloon to hit !!

 

My Hubby said "she comes home with us"  phew !! and he got hold of my Surgeon who said yes I have hydrocephalus and had a shunt put in my head and I woke up. 

 

I saw my parents who were dead,  I chased my Mum, My brother sang to me and my Mum told him not to sing to me, Dad wasn't allowed to speak to me either, a dream maybe but that shunt worked wonders it bought me back from cuckoo land and drained water off my brain xx I awoke with my dogs around me and my Daughter and I cried when she said

"Welcome back Mum"

 

Good luck to you and yours

Win xxxx 

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On ‎5‎/‎7‎/‎2017 at 16:28, Maria R. said:

Thank you Louise, these insights are the few things that help me go through these days. Everything I read or been told by doctors feels like they don't refer to the one I love, the man I'm trying to help as best as I can from the distance, missing him every day in a situation where I am lost.

Does anyone know if it's good for him if I keep trying to talk to him even if he forgets? (I call him every day, doesn't mean I can always talk with him, but I do) Or it may be a cause of stress? I wouldn't  want that under any circumstance,

Sorry didn't reply sooner, gosh yes talk even if he forgets just keep reminding the same things....

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 This week will be 4 months and my fiancé doesn't even know who I am.. Today I connected with him through his family, he was talking with me about work, as if he was still managing his business.. It's just proving what I didn't want to believe,what I was resisting to accept, that he isn't coming back. He doesn't remember he can't walk, or stand up, and he keeps forgetting so he needs constant supervision or he falls and can harm himself.

And I'm struggling to wake up every day to this reality, can't talk about it and even writing makes me break into tears. 

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Maria, believe it or not 4 months is very early days in recovery from such a major event.

Keep faith in your fiancée.

Is he having any rehabilitation? If not I suggest that you or his family really push for it. It won't do any harm and may well be all to the good.

 

I have been told I regressed many years in my early days of recovery but slowly but surely got back to the present time although my short term memory is very poor.

 

 

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Mario, they tell me he is receiving rehabilitation, but they keep talking too about the six months period that they have been told is crucial, what he doesn't recover in this period he probably won't. And what hurts the most is the fact that he remembered more of me in a conversation we had one month ago that yesterday, so my hopes are falling almost to nothing. 

And I won't be able to go visit him this summer (I simply cannot afford the price of the flight and hotel on the days my job allowed me to take), so I won't have holidays. I'm looking for the options I have later, with a heavy heart, and clinging to your advice and comments to help me wake every day.

 

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I don't know why the medics give "cut off" times for improvement. It has been proven that progress can be made for many years afterwards.

Please try to be positive for your fiancée.

 

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Hi all,

As we are heading our sixth month in this struggle my fiancé has been moved to a new facility for one week where its become a little easier to connect with him, so I call him every day when I get home and though we may not be able to talk every time it's more than we had one month earlier. Now he recognizes my voice, and some times talks about the things we have shared or calls me the way he used to, and other days he is more disconnected, and when at some point he confuses memories (I have acquired sister that I don't have who looks like he talks to) or moments he has lived with somebody else I doubt then if he remembers me me or takes me for someone else. 

Everything is very heartbreaking  but my question is: should I correct him when his memory is faulty? Some times I do, and I tell him it's fine if he is mistaken, other times it's just too painful and I just go on with the conversation (talking with him is the best and the worst of my days so..)

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Maria, your fiancée is improving little by little.

It is normal for confusion whilst the brain is healing. Those jumbled thoughts may well correct themselves as time passes. It would do no harm to correct him but do not make an issue of it.

 

Pleased you are able to have more contact with him and that he recognises your voice. Contact with you can only help him along the road to recovery

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Hi Maria,

 

Progress is happening and, yes, it is slow - but it is an advance on the very early days.  Don't forget that.  When I was ill, I didn't recognise my fiancée for weeks either, and I talked broken biscuits, not making any sense at all.  My mind was locked into the early 1950's - I wasn't born until 1955!  I thought my surgeon was the porter!  It isn't unusual for the brain to be wired wrong at the beginning. Six months is still very early in recovery times - this is the brain you are talking about (the most complicated computer on earth) not a broken finger.

 

I would say correct him but not in a confrontational way - just put him right and move on with the conversation.  When his brain is ready he will get it right. Repetition will eventually transfer it to his long term memory.

 

Stay with it, you are doing a sterling job, but it is a long job and there are no easy or definitive answers.  Progress has started and hopefully the advancement will gradually start to pick up but there is no timeline to follow - everyone is different.

 

Best wishes,

 

Macca

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Thank you Macca, that's what I'm doing, correct and make it light telling him it's fine he just forgot but will remember another day... And though sometimes I think he talks to one of his ex I go on with the conversation and try to have a little thing /experience/ something nice I read or saw to tell him every day.. I'm just hoping we are going somewhere and he will keep getting back to himself, at the pace he needs.

Will see how he is when I get to spend the few holidays I have left with him in a bit more than one month.

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