Been away for a while and just thought I'd say hi!

Share information, support and advice on all aspects of caring.
Hi everyone,

I'm sorry to have not posted/replied to posts in so long! As some of you know my husband and I had a very traumatic time last year with him in hospital for nearly 5 months and, to be frank, almost passing away a couple of times.

I have been away so long as things have been so intense since his discharge in December. He unfortunately ended up back in hospital for shorter stays 3 times and other A&E trips too! He is virtually bedbound now and it's the toughest caring challenge I've ever had with him. I mean even more so than when he had brain cancer in 2010. I think maybe that was easier as things were gradually getting better and moving towards something, whereas now this is pretty much his life now.

As some of you may remember he had a hip replacement last summer that ended up getting infected with a rare, very drug resistant bug. He ended up having a girdlestones procedure which basically means he has no hip and has to cope without one completely. He has been told he can't have further surgeries because of the potential risks now, so he can't have another implant of any kind. He is now going to be a permanent wheelchair user. This is particularly upsetting as he needed further replacements in other joints, but because of the issues with infection after his hip operation no surgeon will consider it. And the condition he has is avascular necrosis, which only progresses overall.

It's all very upsetting and frustrating. Especially when we had our hopes pinned on his joint replacement surgeries.

Sorry, just a babbling update really!

Sorry again for not posting in so long, I'll be on the board more from now on!

Jess x
Hi Jess, i am so sorry to read about what you have both been going through together. You must be exhausted. Your husband is so very lucky to have you supporting him.

I am sorry that we can’t make him better and can only say that it sounds like you are being amazing in the support you are giving. I hope you have some help or moments of relief yourself.

I am sure that others will be along to say something more helpful/informed but in the meantime I just wanted to say I am sorry about what you are going through and that it sounds like you are being utterly amazing with your husband. I hope you get all the strength and courage you need to get through what you need to. Please do take care of yourself. Sending you lots of best wishes and hugs.
Jess

I can only give a heartfelt endorsement to everything that Faye has expressed so thoughtfully.
You are his rock of strength.
I just hope and pray that you have someone you can talk to when things seem to have reached an almost unendurable point ( as they do) It helps just to talk about it.

Illness
"Illness is the night-side of life
a more onerous citizenship.
Everyone who is born
holds dual citizenship,
in the kingdom of the well
and in the kingdom of the sick.

Although we prefer to use
only the good passport,
sooner or later each of us
is obligated, at least for a spell,
to identify ourselves as
citizens of that other place."
by
Susan Sontag

You have been through so much It certainly hasn’t been the ‘good passport’ all the time.
Nevertheless I am full of admiration for the example you give of how to deal with the ‘onerous citizenship’
Jess, what a total nightmare. You and hubby have a lot of adjusting to do. It must be very difficult accepting all if this.

Is he still receiving rehab to help him maximise his mobility potential?

Are you having outside care support? I know this sounds harsh, but you need to be able to get out and do things for yourself - otherwise you will go under.

Melly1
Thanks for your posts. It really makes me feel better to read them. We are getting good aftercare at home. He has been getting rehab at home and the district nurses etc.

We don't have any carers coming in, but he does have a support worker for a few hours on a Friday to give me a chance to go out and do some things e.g. use my carer's personal budget for stuff.

It's just very stressful as the operation/s were supposed to improve quality of life for him and now he's worse off. The worst he has ever been.