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Secret caring newbie :) - Carers UK Forum

Secret caring newbie :)

Tell us a bit about yourself here.
Hi everyone.

I've been caring for years, first for my husband and now for my new partner (marital separation - long story)

Pure coincidence that I've ended up caring in a relationship again. It's difficult living with someone who needs so much care sometimes. I found this site and I'm hoping to get some emotional support, advice, etc. It can be very lonely at times.

I haven't told my partner I'm on this site - or that I've even looked for it. I am an open person but I know he would feel guilty if he knew I needed some feedback from other carers. He doesn't need that on top of everything else right now.
Hi Vicki

Hope we can provide you with a place to vent. I care for my son, who has first episode psychosis. Would you mind sharing your husbands condition? It sometimes helps when you need specific advice and support xx
Hi Vicki hope you are OK today
Welcome to the forum hope you is all good
My wife has chronic arthritis but I'd rather be in a relationship than stay single. I told my wife I was on this website so I wouldn't feel guilty of being here. Perhaps you should tell your husband. I've tried reaching out to close friends with my problems but seriously I think they're out of their depth with them.
My husband and new partner both suffer from
Peripheral and autonomic neuropathy. Strange coincidence that they both have the same issues.

I live with my new partner with my 3 plus his 1 children. So it's a hectic household of 6.

Partner is an above knee amputee. So requires a lot of everyday support. Problems relating to his diabetes are constantly getting worse over time and it's frustrating that he does so little to help himself. I'm run down and exhausted doing everything I do for the family and I feel incredibly guilty about being so down with it all.
Carebear, are you getting any help at all?
Hi, and welcome to an excellent site. There's lots of practical advice from those here with long experience of 'the authorities' (NHS, SS etc etc !) to guide you through what you are or are not able to claim/do, etc etc etc.

Definitely, definitely get all the help you can!!

I am concerned, however, that you feel your partner would be upset in some way to know that you are communicating on this site.....you say it's not what he needs right now.....

But why, I wonder? Isn't it good that you have somewhere to ask stuff about what help is available (and it can be a minefield, as those here who've navigated it can testify!) (eg, applying for gateway benefits that then entitle you/your partner to more help elsewhere etc etc). Or are you worried that he will worry that you are worried about having to care for him? Are you worried that he will worry that you 'obviously' (!) must think him a 'burden' if you are 'moaning' (!!!!) on a forum with other carers??

But you DO have a great deal on your plate to cope with! So does he! Surely that's not something to deny or 'trivialise'! Yes, courage and fortitude is required, by both of you, but any kind of (male?) 'oh, don't make a fuss about things!' attitude doesn't always help.

If YOU feel you want somewhere safe, amongst others who are also carers like you, though even if our carees are different (mine is my 91 yo MIL with dementia who is now, thank heavens, safe in a very nice residential home - I'm off to visit her and take her out for the afternoon today!), then if sharing your worries and concerns and frustrations amongst those who will understand where you're coming from, is something that YOU need and want, and so is the right thing for you to do!

If you're worried that he'll worry that you'll worry that looking after him is a 'burden' - well, it is! Looking after anyone else with care needs is a burden! I'm not saying that THEY are a burden - it's their illness/infirmity etc that's a burden! It's a burden to him too!

When my husband had terminal cancer some years ago he was very concerned that I should have 'time off' from looking after him all the time (not that he needed much until the very end, so I was glad for him and for me), but he wanted me to go out sometimes with girlfriends and have 'time off' so to speak from worrying etc etc.

I also acted as his 'researcher' as well, usually over the Internet, so he didn't have to, and in a way it meant I could find out things that perhaps would distress him, but which I could handle. That's another way of looking at why it can be helpful or useful for you to be on a site like this.

Anyway, wishing you all the best. There is NO 'shame' (???!!!!!) in looking around for practical and psychological support in coping with what is obviously a difficult, wearing and emotionally distressing situation that you are coping with. I hope that your partner can see that, and be glad that you've found somewhere that helps you help him, and helps the both of you have a 'nicer life' even if in little ways, given his condition.

Kind regards, Jenny
Ps - forgot to say - important message!


Carers very often feel what I suppose is a form of 'survivor guilt' - ie, they feel guilty about feeling 'bad' about their own situation, given that they are not the ones suffereing from what it is our carees are suffering from.

But it is not YOUR fault that your partner has the illhealth etc that he has. YOU didn't impose it on him! You, in fact, are doing your damndest to ensure he is as well as possibly can be, and as comfortable and cared for!

You are living a 'difficult life' because you've chosen to stick with someone who has substantial health problems, and that is entirely to your credit. You have absolutely nothing to feel guilty about. Of course it gets you down - it would get anyone down! Neither you, nor he, are living the lives you would like to live, which would be possible if your partner had better health.

I also wonder about you saying he does little to help himself - that, yes, can be frustrating, though perhaps it can also be a sign of how 'down' he is himself about his problems (understandable!). Do you think this is something that could be improved - eg, he could (perhaps not by you!) be encouraged to change his ways and in fact help himself more? Or is it something that can only be managed or endured, in which case you may need to 'give in' on it for your own peace of mind!

Finally, I won't be alone in saying this to you, YOU need breaks from this from time to time! All carers do! And, again, our carees should appreciate this need, and 'wave us off' from time to time. A break gives you a bit of breathing space, whether it's a few hours off a week, or a weekend away, or whatever, and recharges your batteries. Sometimes carees (especially elderly ones!) find it hard to 'let go' of their carers, sometimes because they are scared they won't come back!! But a break away makes one a better carer, that is indisputable!
From earlier posts on the forum, one of the most vital, but difficult things to do when caring for a partner is to arranging "time off". Male carees seem to be the worst of all, they need to "get over themselves". It's that male caveman thing of being the big strong provider which gets in the way. They don't seem to realise how busy being a mum is, or how much they are doing for you. You are mum to your own, mum to his kids, and carer for him. A triple whammy!!! Does your partner go out at all, to the pub, the railway society...whatever? Do you ever go out with just your own child? It seems that he is doing very little whilst you are doing almost everything, and that needs to change. Slavery is banned in the UK! You would, after all, be leading a very different life if it was just you and your own child. I don't know what he is physically capable of doing in the home, so it's difficult to make appropriate suggestions. Does he supervise homework, bath time, deal with all the paperwork and bills? I have had three lots of major surgery, and despite being on strong pain medication, virtually unable to walk for five years, I still managed to do a lot of things by carefully working out different ways of doing things. Has he tried any of these strategies?