My Wife

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ShaunB

MB Enthusiast
SUPPORTER
Joined
Oct 14, 2013
Messages
1,658
Location
N.Ireland
Car
W213 Designo Hyacinth E63
Guys,

As of today, my wife has been in ICU for 493 days, and I've been with her for probably 490 of those days.
It has been the most stressful experience, I wouldn't wish what we're going through on my worst enemy.

We spend about 5 or 6 hours per day with each other, before we need to say our good byes around 7pm. I then need to go home and attend to things, eat and work.

She has a very rare condition which she's had from birth.
It's called a spinal AVM.
It was diagnosed in 2000 via MRI after some symptoms persisted. It's very high up on the spinal cord (C3)
It's bled in 2003 resulting in 8 months in hospital and mobility issues with the left side of the body.
But after recovering we travelled extensively, and enjoyed every single day.

20 years later the fvcker bled again in April 2022, and then several times in June 2022 in the space of 48 hours. This bleeding plus a subsequent medical procedure has had catastrophic impact.
The medical procedure was to prevent probable death from another certain bleed.

One might argue death would have been kinder.

Currently it's is paralysis of neck down, and there is no possibility for anything to return.
She also needs to rely on a ventilator to breath, we talk about everything, and we try to make the most of what we have.

I need to build an extension to get her home, all needs funding by me with zero help as I'm not entitled to any it seems.
But here's the dilema, the NHS have said they do not recommend me commencing anything until the overall package of care is agreed, the circumstances mean its difficult to put all the pieces of the care package together, as it will require an ICU trained nurse to be at home 24*7 (not living in, just on shifts like ICU), plus another helper nurse.
Its also requires specialist equipment skills like ventilator and tracheostomy knowledge.

The relevant government authorities have decided that due to me working full time and my wife having a private pension, means zero financial help with the extension.
She did have PIP/DLA, but the relevant authorities removed all those things after she was in hospital for 28 days, that's how the system treats you :mad:

The nurses in ICU have said that I should create a just giving page and they would post it on their social media for us.

What are the thoughts on here?

If I did do this, would members on here share it on social media? Or is that against some sort of forum rules?
I don't participate on any social media, bar two car forums you see, I have already asked the members on a local car forum, and the forum owner.
Everyone has said they will share the page on their social media.

My priority is to get Ann home, because this would make things much easier for spending time together.
Things will never be the same, we know that, but we need to make the most of what we can, and while we are still able to.
The future is grim.
 
A really sad history. I agree entirely with what Darrell has said. Best of luck.
 
I’ll reply in more detail this evening Shaun but for now sending our very best thoughts & wishes to you both. I’m well aware of how devastating it is to see someone you love suffer.

Certainly do the funding page. Post on as many plate forms as possible. You’ll be surprised just how many strangers would be happy to throw in a few quid. 👍
 
Thanks
I have already engaged with an architect, the extension is designed, and planning permission/building control is all completed.

I am speaking with 4 construction companies to obtain estimates
 
Can't even imagine what you are going through, Shaun, it's so sad. 😥 All I can say is, I'm thinking about your Wife and you and your family, at this very difficult time. 🙏🙏
 
I am so sorry to read this, you've been dealt a terrible hand but at least you've had the good luck to find one another and have happy times to remember 🙏 I don't know about just giving but this sounds like as good a reason as any 👍
 
Shaun, it's difficult to comprehend the reserves of compassion and resolve that you must have to draw upon every single day in supporting your wife and keeping yourself going.
All best wishes and positive thoughts to you both.
 
Not much I can add here except to say I'm thinking of you and your wife Shaun.
You have both been dealt a really bad hand, and I commend you for continuing to care for your wife and make future plans.
Wishing you both all the very best!
 
I’m incredibly sorry to hear about your situation, I hope things get easier for you both. 🙏
 
Thoughts with you , can't imagine what you're going thro but you sound an amazing person and hope you're able to get things sorted for you and your wife.
 
A bit of a long shot, but what about the TV program DIY SOS? You have nothing to loose in asking/trying.
I really don't know how I would cope in your circumstances, total respect for what you're doing and can only wish you and your wife all the best.

KR Matt
 
A bit of a long shot, but what about the TV program DIY SOS? You have nothing to loose in asking/trying.
I really don't know how I would cope in your circumstances, total respect for what you're doing and can only wish you and your wife all the best.

KR Matt
Tried that last year, didn't hear a single thing
 
Thanks for all your replies.
I've spent considerable time today talking with a construction company. They have impressed me, issue now is whether they can allocate time for my project. I wish to have it ready for July 2024, so my wife doesn't spend a third birthday in ICU.

When I create this just giving page, I will post it here and kindly ask the good folks on here to share it via social media for us 🍺
 
When I create this just giving page, I will post it here and kindly ask the good folks on here to share it via social media for us 🍺
If it's any help, a just giving page was started for someone near me diagnosed with terminal cancer. There was treatment available from Spain, but not from the NHS. The just giving page hoped to raise £30,000 for this but within 2 weeks had raised over £40,000. The wider the page is shared, the better the chance of reaching your goal. Good luck, I will certainly donate to it.
 
Words couldn’t possibly express my sorrow for your poor wife’s situation. I’m sure most here couldn’t comprehend what you’re going through, though heartwarming to hear you talk of your closeness even in such dire circumstances.
My absolute respect for you, and needless to say I’ll look forward to you posting details of any website that I could readily contribute to. Keep strong.
 
So sorry to hear of your wife's condition, definitely set up the page it will at least help towards anything you have to do. My best wishes/prayers to you all!
 
Thinking of you both and your nearest and dearest ❤️❤️
 
Sorry to hear this. I hope you have the strength & support to continue - it is tough going
 

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