Hello everyone! My first time on here but been caring for my husband for quite a while now. We seem to have gone from one illness to another & it’s now taking its toll on our relationship & my mental health. I’ve been put on antidepressants & I genuinely do not know what state I’d be in without them. I feel miserable, alone & totally hopeless & I’m only 44. I guess I’m hoping to see how other people cope & at least be able to talk with people who can actually understand what I’m going through :crossed_fingers:I’ll give you a brief (!!) outline of our situation.
My husband stood on a piece of glass whilst on holiday in France & got blood poisoning. Unfortunately it got into the bone but the doctors missed it. He ended up with Charcot foot - the bones just turned to mush. His foot was rebuilt in February 2014 & three months later he was told to walk on it. The pins came through his foot & he was in agony. The doctor told him he was going to have to amputate just below the knee & this caused my husband to spiral into depression. As it happens, they decided to have another go at operating & so that happened in the November. He was totally non weight bearing for 12 months & then in a boot & on crutches for another 12 months. During this time, his depression & anxiety were horrendous & he would be physically sick if he had to leave the house. Then he was diagnosed with kidney failure & in August 2017 he started dialysis. In January 2018 we trained to dialyse at home & we were doing it at home, on our own, in the March. Over the next few months, dialysis was fine but he was getting weaker & weaker & his legs would just give way. My husband is an ex professional rugby player - he’s 6ft 3, 24 stone & a 54 inch chest!! I’m only 5ft & trying to lift him is not easy! Things have got progressively worse & he is now chair bound or bed bound as his thighs just don’t seem to work. He has been in hospital for the last week as he fell again & I just couldn’t get him up. The doctors have finally listened & are trying to find out why he keeps falling.
I feel like I’m not his wife anymore, I’m his carer as I do everything for him. We don’t go anywhere & have nothing to look forward to or even anything to talk about anymore. He feels massively guilty for putting me in this situation & I feel guilty for feeling so miserable when it’s not his fault.
Sorry - I probably win the award for longest 1st post!! And that was honestly the short version!!

Karen, hi and welcome - but what a HORRIFIC situation you are in. And just terrifying that this seems to have happened simply from a cut on the foot… (though maybe there have developed non-related problems, but even so).

Would I be right in thinking your twin problems are (a) practical support (including financial) and (b) emotional support?

Do you think you and your husband are getting ALL the financial support/benefits etc etc to which hjis condition entitles him? Others here are very good on knowing all the ‘ins and outs’ of claiming and ensuring you are not missing out on thigns you may be entitled to.

Emotionally, though, you are really both ‘up against it’. I am not in the least surprised that your husband is so down, and, by knock on, you. It’s great he ‘feels bad’ about ‘imposing’ on you, as many ‘invalids’ become very ,very selfcentred alas.

I am glad the doctors do seem to be trying to get to grips with the underlying problems. I hope that they are also consulting ‘sports medics’ etc, as, having been a pro rugby player, there is no doubt that the game takes a toll - just in terms of the bruising etc that even a strong body receives over the years. Thigns that he could cope with when young may now be coming out of the woodwork.

Are you consulting the Internet yourself? I found that when my husband was diagnosed some years ago with a relatively rare cancer, that the Internet was a godsend! I found out SO much from carers forums and so on …and I would urge you to consult ‘foreign’ ones too - eg, the USA, as there is so much more than in the UK in terms of information that might be useful (for example, you might find that professional NFL players in the USA are prone to your husband’s problems, etc etc)

Sometimes, when we are beleaggured by multiple problems (both phys8ical and emotional), it can help to make a list of the thigns that MOST upset you…it helps you ‘triage’ the problems so that IF, say, you could sort at least one or two of them, the negative impact of the others would lessen.

What do you think is the ‘core problem’ that you would like ‘fixed’ (other than 'my husband entirely better!)

Thank you for taking the time to read my ridiculously long post & for replying!
To be completely honest, I don’t know what I want. As I’m pretty sure everyone who cares for someone knows, nobody totally understands what you’re going through. I suppose I just need somewhere to be able to say how I’m feeling & be understood instead of judged. As my doctor said when he put me on antidepressants - I can’t make your situation better but I can help you cope with it better!
I was teaching 5 days a week & I reduced it to 3. The plan was that I would have more flexibility for appointments & dialysis & going out but as it turns out, I ended up sat twiddling my thumbs, doing nothing & being £600 a month worse off so I’ve requested to go back full time. I feel guilty for leaving him at home for so long bed bound, but financially & for my own sanity, I had to. We’re not entitled to Carers allowance as I earn too much but I have just managed to reduce our council tax because one of our downstairs rooms is now permanently used for my husband to ‘live in’.
Nerve tests were done on Thursday & he’s got to have a lumbar puncture at some point. Occupational health & the physios are supposed to be coming out but I don’t know when. I suppose I should be more positive about the situation but I’m really struggling. He has already asked if I want to split up with him as, in his words, he is clearly making me so miserable. We’ve only been married 6 years & I’ve certainly done the in sickness bit. I’d just like someone to look after me for a change. I know that sounds really selfish but I can’t help how I feel :frowning: I broke my heel in November 2017 & was in cast for 3 months & then a boot for another 3 months. I still had to do everything for my husband though. I’m sorry, I’m just really low & struggling to see any positives in anything. I want everything to be ok & I know that’s not going to happen :cry:

Karen, it’s perfectly normal (and understandable"!) to want (a) everything to be ‘all right’ again and (Ib) to run away!

When my husband was first diagnosed I felt we were like we were in a car heading blithely along ‘The motorway of NormalLife’ looking forward to all the ‘usual thigns’ (we were actually just about to go away on holiday)!, and then suddenly, a slip road had opened up and we’d been shunted up it to a road called ‘Nothing Will Ever Be The Same Again’…

below, ‘everyone else’ was chundling along the Motorway of Normal Life…except us.

And we could NOT get back to it.

gradually, ‘Having cancer’ became what is often called in cancerworld ’ The New Normal’…

You’ve had I think five long grim years of coping with the horrific consequences of what had started out as a ‘minor injury’, and tha tis a LOT to cope with.

You don’t mention family - as in parents/ siblings, so is it just ‘you and your husband’ facing this all on your own? (No children I take it???)

The isolation does indeed, get to you, and that is why thjis forum is so good, because whatever our caring problems (I’m long a widow, and ti was my MIL with dementia I was caring for, who has recently died), we all ‘know’ what it is to have to spend our lives ‘looking after someone else’, for whatever reason.

It was probably good that you went back to full time work, IF simply ‘being at home all day’ wasn’t actually making much of a difference to your husband.

Again, if I were to say to yo - if you could fix ‘one’ of the two ‘big problems’ he copes with - the leg problems OR the kidney problems, which would it be? Which takes a greater toll?

For example, IF his mobility improved, and he were no longer bedbound, but could get around more, would that be ‘better’ than say not having to cope with dialysis (great you can do it at home at least…)

Or, conversely, IF he were to have a successful kidney transplant, but remained bedbound, would that be ‘less worse’ than the other way round?

In practical terms, we are the start of a new year - can you and he sit down and have a ‘Look, this is what we have to try and get done this year so we are in a ‘better place’ by this time next year, on as many fronts as we can manage’. if you have clear goals set, and SOME idea of timeline (a wall chart even!), and you know wher and when you have to ‘push hardest’ to get thigns done, it can help give a structure and a degree of ‘control’ over a situation under which you are feeling so very understandably ‘helpless’.

Finally, do you think that something like a ‘holiday’ for yourself - with say your husband in respite care?? - would give you a bit of break? It might, yes, trigger the total ‘I needed to run away PERmANENTLY’ but in a way, even discovering whether that is what you REALLY want to do, would at least ‘clarify’ things in your head???


I’m not surprised you are struggling, and i’m glad you’ve found us, because often the first step to getting help IS admitting that you are struggling.
My eldest son is the same size as your husband, I call him my “Man Mountain” at times, but to my nieces he’s a “Big Teddy Bear”!
I cannot imagine how you begin to nurse him. I’m nearly 5ft 10" tall and don’t think I’d be able to do what you appear to have been doing.

I’m very concerned that you don’t mention any outside help or aids to help him move. When did he last have a Needs Assessment from Social Services, and an Occupational Therapy Assessment. Make absolutely certain that he is not discharged until this happens and everything you need to help you is in place BEFORE he is discharged again.

He should be getting a lot of help from health/Social Services.
Is your house properly adapted for him?

There is never any need to apologise for sharing your feelings with us, but I would suggest that if Karen is your real name, you adopt a nom de plume instead. My own is a partly taken from where i live, for example.

Finally, did you have Health Insurance when you were on holiday. Did you tell the insurers about the incident with the glass?