One Hundred and Eighty!

[JaneC]

Today, my darling husband Robin has survived for exactly 180 days following a massive non-aneurysm SAH.

 

That's also 180 nights spent alone in a hospital bed and 180 heparin injections into his abdomen. But most importantly that's 180 more chances I have had to say "I love you" each and every day.

 

You may remember that he is currently in a Neuro Rehab Unit where the care is a bit hit and miss, depending on which staff member has been allocated to care for him. Some are outstanding, others leave a lot to be desired and amongst the latter I know I have a reputation for being a particularly demanding wife (I care not).

 

The unit have tried to pressurise me into making decisions about our future based on Rob's condition as he is now, yet they also acknowledge that he is making steady progress. Whilst I am not in denial that our world has changed and our future "normal" will be different from before, I refuse to make monumental decisions until we reach a point where Rob's progress becomes more negligible.

 

Having been told repeatedly from the outset that "each individual's recovery is unique" and "it's impossible to say how long it may take" I am now somewhat bewildered as to how they can say "Rob will be a wheelchair user on discharge" when he is continuing to make progress. When I challenge them they backtrack and say things like "oh we're not giving up on him" , "miracles do happen" and "we love to be proved wrong".

 

I'm therefore wondering if any members or their families have experienced similar negativity/obstacles. I am also keen to hear from anyone who had a similar prognosis and have battled through to actually walk again.

 

But most of all I just wanted to say how very proud I am that Robin is working so very hard to regain his former abilities. Here's to the next 180 days and the progress they will bring.

[Super Mario]

I think Win's family were told to put her in a home but they insisted she went home. She was also in a wheelchair but can now walk a short distance and that is increasing slowly.

If she picks up on this I am sure she will reply.

[Winb143]

Hi Jane,

 

As Penny has said above my Hubby was told "have you ever thought of putting her = me in a home" the cheeky so and so's.

Good job my hubby said no.  phew !!

 

They were told I'd never walk and to think about it.

 

I came home tapped my feet and thought if I can tap then I can walk, best Christmas pressie was a zimmer frame my hubby

got me and it was hard work but I got my dignity back.

 

I sing, I laugh and am so happy to be alive.   Keep pushing him Jane as we can be awkward.

 

Be Well the pair of you xx

Love

Winb143 xx

[Daffodil]

Jane, I read a marvellous book written from the point of view of a wife, the wife of singer Edwyn Collins after his brain pop. They pretty much wrote him off but he is now back writing any recording songs and gigging a long six years later, a changed man but a happy one, anyway it gave me hope when I read it for the battles I was facing but also shared the view of those who witness our fall. It's calling Falling and Laughing.

Win. You are amazing. Keep us smiling and singing!

[DawnS]

Hi Jane,

 

what amazing strength you have, so positive! It's positive thinking that helps get us through this.

 

Whilst my recovery has come to something of a plateau, I am almost 3 years in. Although I could walk after my operation, I couldn't manage any distance without a zimmer frame. I can now walk as many miles as my fatigue lets me.

 

I have to say that I agree with your thinking there, how can you make a decision based on how things are right now? And 'demanding wife'? Good on you!

 

I wish you all the best x

[JaneC]

Thanks Penny, Win and Daffodil - your replies are an inspiration, as always.

 

I have already refused to put him in a home ( I told them over both of our dead bodies!) - he's 59 for goodness sake and far from in need of that type of environment.

 

Thankfully at the moment he doesn't need pushing - he's very determined and is totally on board with our own three-pronged escape plan (walking, talking and weeing!). Nevertheless, I still give him a "pep talk" on a daily basis as I have done this since Day 1 in ICU.

 

I shall get the book you recommend Daffodil - always good to have another perspective and maybe even pick up some coping strategies/tips.

 

My overall strategy now is to bide my time. I have applied for a disabled facilities grant from the local council and the OT assessment of our home can take up to 90 days for an initial appointment. I do not intend to chase them for an earlier appointment as the longer Rob receives physio at the rehab unit, the more strength he will gain and be more likely to walk again (if only around the house with aids).

 

I shall of course keep you all informed of our progress and thanks again for your support x

[JaneC]

Thanks also to Dawn. I do try and stay positive overall but I certainly get my black moments too.

 

I'm sure that reaching a plateau is just the body's way of saying "I'm all done in for now so let me rest and I'll amaze you a bit more in a while".

 

I'm also pretty sure that as time passes you may not really notice the tiny changes/improvements as they are not as huge or momentous as those great gains achieved in the early days/years.

 

Wishing you all the best too Dawnx

[Louise]

I was told (ok Ronnie my husband & my Dad) that I would be 80% disabled  which means 20% able well I took that and turned it around and added to it, it wasn't easy there were lots of tears, lots of hard work.

 

It is true everyone recovers at their own rate or it depends on how the SAH has left them or effected them we're all different.

 

I was still getting better at the 3yrs mark & on..

 

Take care

[JaneC]

Thanks Louise.

 

Rob has refused to go to physio for the last two days (so much for me saying earlier in this thread that he didn't need pushing) so I've had to tell him some home truths about the consequences of not working at it. And today of all days (it's 6 months to the day since his pop) Hope he will keep his promise of agreeing to go to physio tomorrow.

 

Watch this space!!!

[Louise]

Had days like that too Jane, tell Rob if he doesn't go then he wont be able to do things he used to love doing (pick something nice and easy) I didn't like physio much they work you too hard but now thank-goodness I pushed because the rewards are wonderful...

[kpaggett]

Hey, I still had WAY more improving to do at 180 days.  I am almost 3 years and still improving.  Like Dawn, I reach a plateau and then get a bit better after another 6months or so.  I think it is really early in your hubby's recovery...however, it is always good to have a plan-B in case a swift need arrises like the care at the place he's at becomes horrid or something.  

 

Keep up the advocacy for your husband, he can't do it himself right now...I know he really appreciates it.  I really did when my husband stepped up for me!

 

~Kris

[Macca]

Jane,

Don't you just hate it when those people are so negative?  Look at what Robin CAN do.  If he can't do something, find another way of doing it and hey presto -he can do it after all -with practice and support!  We all battle negativity on a daily basis.  Able bodied people are always being told 'you can't do this or that.!'  It happens every day -it's just when you are ill that negativity seems to be magnified for some reason.  In your own mind, unconsciously, you judge people by what you, yourself, consider to be 'normal' standards.  What the heck is normal anyway?  I'll tell you -it is what is right for you and Robin -no one else -just you two!

 

You make decisions when you are ready and not before -you know him better than anyone else.  Ask those people to get on board with you and turn their negativity into positives by reminding them of the progress he has made already - and continues to make, and if you see that slipping - keep on reminding them. If they won't then get them away from you, you don't need to be dragged down, you want to be hauled up! I make progress every day - I still have fatigue and short term memory loss and some muscle weakness but every day that passes (nearly four years now), increases my determination.

 

Look at Win's story -there is inspiration -despite the singing (long may it continue)!!

Good luck Jane and best wishes to both of you

Macca

[Winb143]

Jane,

 

Macca speaks wise words apart from my singing !! Cheeky Macca lol xx

 

Keep going Jane and never give in, Rob is improving?

 

You will both get there so smile xx

 

Rest when you get the time.

 

Love

WinB143 xx xx 

[Macca]

Jane,

I was thinking about this some more - I think people believe they are helping in some way by saying you can't do things - almost a protective instinct.  However, in reality they have the opposite effect and we all need to tell them that.  If we didn't let our children do things, they'd go to school in a suit of armour and never be allowed out to play!  Be positive and keep pushing Rob to do more and be challenged by more things -he will come to realise for himself that he is making progress.

Win is right also -resting properly is as important as maximising effort when you do things and you can help Rob the most from a position of strength in yourself - not weakness.  Nil carborundum and all that!!!

Best wishes 

Macca