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Carers UK Forum • Scared my husband may pass away
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Scared my husband may pass away

Posted: Tue Nov 13, 2018 2:11 am
by Jess_1612
Hi everyone,

Sorry I've been away for a while (yet again!). It has all been a bit crazy. My husband, as some of you know, has been in hospital since the beginning of August with an antibiotic resistant infection following a hip replacement.

After a rather frank discussion with his consultant I was told I have to be prepared for him not to pull through and for things like multiple organ failure.

I am smily and affectionate with him and we still laugh together, but when I am on my own, I can't cope at all. I can't bear the thought of losing him.

I don't know what to do

Re: Scared my husband may pass away

Posted: Tue Nov 13, 2018 2:29 am
by charlie
Oh Jess.....I've just read your post and I am so sorry this is happening to you and your husband. I nearly lost my daughter a few years ago and can still remember the feeling of utter disbelief, terror and numbness when the surgeon warned me of her chances. Fortunately she did survive, and I very much hope that your husband is as lucky. I'm sorry I can't offer any more useful advice except look after yourself....sleep if you can, eat if you can....I'm sure the nurses will be on your case if you don't! Do you have family /friends with you, or at least can talk to them? Hugs

Re: Scared my husband may pass away

Posted: Tue Nov 13, 2018 2:33 am
by Jess_1612
Hi, thanks for your reply. My friends and family all live down south and I am in the north west. They speak on the phone daily and come up when they can, but it is hard. It's just so scary to be told that. I knew it wasn't good when I was taken into a side room to discuss my husband's case

Re: Scared my husband may pass away

Posted: Tue Nov 13, 2018 3:28 am
by charlie
I'm overseas so I don't know what support systems English hospitals have now, so I'm not much help I'm afraid. Just wanted you to know there's someone out there reading your post and you're not alone in the early hours.....I'm sure there'll be others coming on to support you to, it seems like that sort of a forum. Hugs and will be thinking of you both

Re: Scared my husband may pass away

Posted: Tue Nov 13, 2018 10:57 am
by jenny lucas
I, too, know the awfulness of 'keeping vigil'....I did it after my husband had his cancer op, and sat with him after his (very long) surgery, all through the night in intensive care, until he surfaced.

Then I did it all over again, eight months later, when the cancer finally 'got' him.....

You sit and wait and talk and hope and hope and hope and fear and fear and fear.....

In your situation, though, there IS hope (there really wasn't for my husband, it truly was 'a question of when not if'.....), but what makes it so difficult is that the doctors can't really put any 'meat' on that hope. They simply don't know....

That said, I do, personally speaking, think that the BEST you can do is 'root for him'....human health is a strange, mysterious entity, and we know from all those Victorian novels how 'unknowable' it was when someone had a fever....sometimes the fever broke, and they lived, and sometimes it did not, and they died.....

But giving your husband the WILL to live is surely vital for him? The human body is incredibly strong and resilient in many, many ways, and we have been bred for millions of years to triumph over the constant war we wage against microbes. Yes, antibiotics are an incredibly powerful weapon - but so is our own body, too....

If he can 'keep the bugs at bay', so they don't flood out into his system, if he can 'go on fighting from inside his own body', if the mysterious interaction between body/mind/brain can help to tilt that balance, turn that tide in HIS favour.......that is what you hope and pray for.....

Is he on antibiotics 'alone'? I only ask, because (sorry, here goes, full of 'advice' from 'things someone read somewhere in a newspaper.....'), I DO remember a year or two back reading about a doctor visiting from Africa, who encountered an English patient in hospital who had an infection that was simply not responding to antibiotics, and the visiting doctor basically poured a bag of sugar (a kilo or so) over the wound.....and it healed. He said it was all they could do in African villages, and that it COULD sometimes work.. (I guess it's like how jam doesn't go off, the sugar is just 'too sweet' for the bugs)(it sucks the bacteria dry by osmosis I guess, and kills them?)

Slightly less 'fancifully', how 'on the case' do you think the hospital is? Are they in touch with the latest findings on resistant infections, who is the UK's expert, where is the UK 'centre of excellence' for such thigns?

I found it, myself, incredibly 'vulnerable' being the wife of a severely ill man, as I felt I HAD to 'fight' the system, and it is so hard to know when things COULD be improved, treatment-wise, and when simply to 'accept' what they say.

But always, whatever the above, be with your husband, and fight WITH him, so he knows you are 'on side' and 'there'......we don't know if it can help, but it can't 'not help' if you see what I mean. Like I say, there is powerful but mysterious interaction between mind/brain/body, and we might as well 'err on the side of hope'.....

And I do hope that this will be, for you and your husband, 'hope fulfilled'.....

Re: Scared my husband may pass away

Posted: Tue Nov 13, 2018 2:00 pm
by Tomorrow is another day
I'm five months on from 'the conversation' and I wish I could find words to ease your mind, but they all seem so inadequate, so I'll simply say - hang on to hope, until there is no hope. Hang on to each other like there's no tomorrow, and say the things you'll wish you'd said if tomorrow never comes.

Sending you hugs and hope, along with the strength and courage to face whatever road lies ahead x

Re: Scared my husband may pass away

Posted: Fri Nov 23, 2018 9:42 am
by Jess_1612
Thanks for your responses - I really appreciate it :) He seems to have turned a bit of a corner the past couple of weeks. Things are looking slightly more positive. I find it hard though - I daren't hope because things always seem to come along to massively set him back again.

I'm seeing his consultant again today - so will be asking a million questions!

Jess x

Re: Scared my husband may pass away

Posted: Fri Nov 23, 2018 11:31 am
by jenny lucas
That DOES sound more positive. I do hope so!

What has the consultant told you?

'Cautious optimism' is usually a 'wise' attitude - we hope for the best, but are 'guarded' against a relapse.

Even if there IS a bit of a relapse, so long as it does not drag him WAY back down again, that is an overall 'gain' if you see what I mean.

HOPEFULLY, if his body is starting to 'rally' it will be a 'virtuous circle' and his body is gradually 'bootstrapping' itself towards health again, and 'winning' over the infection in his system.....

Re: Scared my husband may pass away

Posted: Fri Nov 23, 2018 12:48 pm
by bowlingbun
Jess, I do hope he is over the worst now.

Re: Scared my husband may pass away

Posted: Thu Nov 29, 2018 7:31 pm
by Jess_1612

It does seem like the worst is over - but as you say I have 'cautious optimism'. He is far more stable than he was and his bloods etc are trending in the right direction and all that.

We spoke to the consultant yesterday and there is a small chance he might be home for Xmas. This all depends if the correct care package and home nursing teams (IV team for his antibiotics and a specialist nurse to change his vac dressing) can be put in place. Safety is of course the primary issue as none of us want him home only to return a few days later, especially since he has developed things over the course of his stay that were medical emergencies (sepsis and pancreatitis).

I want him home, obviously, but I am very nervous and on a selfish level, I'm petrified about the level of care he needs.