How do I carry on

Set the scene we are boyfriend and girlfriend since we were 15 lived next door to one another- got married in 1980 - had 3 kids all grown up now with kids of there own - so we’re lucky enough to be grandparents and also had 2 great grandsons last year - my hubby’s never had an illness we’ve both worked since we left school in the 70s - then 3 years ago my hubby started shuffling his feet - the doctor said it was his balance and without tests he had grommets fitted - these fell out - it then took until February 2020 to realise it was something else water on his brain- he had a shunt fitted at the bottom of his spine in April 2020 - when I picked him up
From hospital after 4 days he could walk - talk and it was my hubby back again - within 3 weeks he started to shuffle again and went down hill very quickly to not being able to wash himself - his whole body was deteriorating the shunt had snapped in his spine - we moved from a 3 bed house into a small 1 bed bungalow as he couldnt use the stairs anymore - i gave my job up in September as he couldn’t cope on his own and had hidden loads from me - it took until January this year for him to go back under the knife this time it was a shunt in his Brain this is a long process- and it’s like he’s given up - he’s 59 but aged over night - he sits and watches tv most of the day - then off to bed for a rest - then back up for his dinner - I don’t know how to help him as when I look at him I just want to cry - we had plans ready for when we both retired in a few years time - these have now gone out of the window - he can use a fork but not a knife as his co ordination is all over the place - he’s gone from using a zimmer to a stick - this is never far from his hand - he won’t exercise as due to lock down there’s no physio ? And he’s got it in his head that without being shown he can’t do it ( before the illness he was all was optimistic)
Me - I’ve gone from a wife to a carer it’s like I’ve gone full circle - from having the kids as babies and my hubby out working - so it was me cooking, cleaning looking after the kids - to just the 2 of us sharing everything having a fantastic life - to me cooking , cleaning , no adult conversation and to be honest I’m struggling really bad - I don’t think of myself as his wife anymore just somebody who looks after him - and it’s heartbreaking
Has anybody else felt like this and if so how do you fix it

I feel exactly the same, (albeit the sexes are reversed, the medical problems are different, and I’m older), but there’s just nothing there of my wife any longer, we now argue almost every day, despite never having had a row in the first 45 years of our marriage. I say argue, but it usually very quickly descends into farce as she begins to confabulate and then forgets what she said one minute ago. She too is reluctant to exercise, she is losing the use of her left arm and yet despite my appeals to use it at every opportunity she appears to go out of her way to not use it. This sort of thing is probably what we argue about most: I’m not bad as a problem solver and often make suggestions as to how she could improve how she copes with her MS. How many of my suggestions has she embraced? Not one is the answer, she just continues to struggle on in exactly the same way as always, unwilling to do anything differently to how she first conceived to do it.

I don’t know what the solution is, other than to put them into residential care and re-start your life. I try and distance myself from it as much as possible, (but that’s not easy), I do escape every afternoon for a couple of hours which helps to keep me sane, and very soon I am putting her into respite care for a couple of weeks while I go away for a holiday, that will be my first experience of having even one day off for over six years.

Hello Erica

Welcome to our forum, your situation with your husband sounds really difficult. I’m not sure how much you have looked at on our website, but during lockdown we started running an online weekly care for a cuppa session. This runs weekly for an hour, its a chance for carers to grab a cup of tea and get on line and chat to other carers, who are in a similar situation, sharing tips and being there to support each other. The session is run on zoom and we have quite a lot of positive feedback, many carers have found it really helpful. There’s no pressure to share anything you don’t want to share. It would be great to see you there Erica. I’ve attached the link for you.Online meetups | Carers UK

We’re also running various fun, informative and relaxing sessions weekly, we’ve called these sessions ‘share and learn’, the sessions run at various times during the week and can range from yoga, singing-a-long to various guest speaker sessions. I’ve attached the link for you. Next week we have a range of various share and learns during carers week - please have a look and see if one grabs your attention Erica, you can sign up/book by clicking on the link Share and Learn | Carers UK. We also record some of our share and learn sessions, you can watch previous ones by clicking on this link it will give you an idea of some of the sessions we run Erica.

And of course there is our help and advice section on our website Help and advice | Carers UK this will give you access to practical, financial and other advice, of course if you have a specific question or need help you can email or ring our advice-line, they provide information on anything from benefits, carers assessments etc, I’ve attached the link above for you.

Please think about coming along to one of our meetups Erica, it would be lovely to see you there.

with best wishes

Hi ,

I am in similar situation My husband had a stroke and suffers with copd, he is just the shell of the man I married, Like you retirement plans through the window from wife to carer, it is tough, and there are many days wher I just want to disappear, I am trying to build a life within the limitations I have found myself living wit, it is not easy, I try and Ovid did screw these plans up , however hopefully we can get back to a bit of normality. I started by meeting a friend for coffe once a week that was bliss just being out, started again last week. I tried swimming, but not much socialising in swimming, , I think I am going to try meeting up with a walking have probably been strong for your hubby for a while now it is time to be strong for you,you are important and need to be kind to you, you might think I am a little sad with my next statement , but I treat myself to a cake or a meal I really enjoy, and that is my kindness to me, it is putting me and things I like back in to living, you do have a future it as with mine is not what we would like it to be, that doesn’t stop us from making a new one albeit a very different one, take baby steps, don’t give up , ask for help the hardest thing to do, don’t give up and find time to pamper yourself.