Struggling with situation

For issues specific to caring for someone with mental ill health.
Not sure if there's really any advice that people can give, whether this is just a rant, or a desire to talk to people in similar situations. But anyway, I posted in here in a few years back when my husband was first diagnosed with schizoaffective disorder, depression, anxiety and OCD. At that time things were quite bad with his symptoms but since then we have found medication that works (mostly) and have been awarded ESA, PIP and carers. So the day to day struggles have lessened.
However, I'm now struggling with what my life has become. My partner can't work and his illness means he needs me around most of the time, or his depression and paranoia get worse. I'm kind of OK with that. He's not great fun to be around most of the time but he's not angry or violent, just sleeps a lot and doesn't have much enthusiasm for things. We rarely go out and he can't cope going to strange places so our lives are a bit diminished. But it is looking to the future that scares me. I'm 45 and I feel like my life is over. I was doing a PhD but have had to stop to take care of him. I'm not so bothered about that, if I really wanted to complete it I'm sure I'd find a way. But I hate that I'll probably never get to work again, or travel anywhere or do different things. Pretty much all I do is housework and watch TV with him.
And my biggest issue is the lack of affection. he never shows me any affection, no hand holding or kisses, and no sex. I've tried talking to him about it but he just said things like 'I don't like kissing and touching' (he used to). So even if he was to try and be more affectionate I'd feel like he wasn't enjoying it now. But I don't think I can live the rest of my life without love and affection. I feel like I deserve to be loved and desired. I see other women my age with loving partners and new relationships and I don't see whats so wrong with me that I couldn't have that too. But I don't think I could rebuild that with my partner now, its been too long and I know its not what he wants. he's happy the way things are. he just wants me to look after him. So I know I have the choice of stay and live this way or leave. But how do I leave. We have a 16 year old son (our other children are now adults). Our income is only benefits and without the extra we get for his illness I'd never be able to manage on income support by myself, I've done the maths. Ok, hopefully I could find work but that's not guaranteed immediately. I couldn't afford to leave the home (council), and obviosuly my son is at school and has a life round here. But my husband could never manage to move out and live alone and none of his family would take him in. I dread to think what would happen to him, he cant handle money or bills. And I'm sure the whole situation would make his illness far worse again.
He doesn't even try to get better. He takes his meds but that's it. He had a counsellor but didn't like him. He had group therapy, didn't like it so wouldn't go, had a psychologist and lied to her. He was recently diagnosed with type 2 diabetes because he's put on so much weight in the last few years, still eats the same stuff. It is like he is totally comfortable and happy with his life, doing nothing all day, so he has no desire to make any changes.
He rarely showers and makes no effort with his appearance and it all just makes me feel like he takes me completely for granted, that I'll always be there cooking, washing, making sure the bills are paid and keeping his life totally stress free, and that he doesn't have to do anything in return. I can see no way out. But he's also not a bad person. The meds have ended the violent outbursts he had when first ill. He's perfectly pleasant, never gets angry or rude. I just keep thinking when I'm old and at the end of my life I'm going to have so many regrets, to know I'll never be kissed again or told I'm loved, that's probably the thing I hate the most.
Sorry for the long post. I have no one to talk to (only my kids and I don't think this is a topic they should know about their mum and dad). So I guess I'm just getting it all off my chest. Thanks for listening.
Hi Lorna,

I care for my son, so my situation is a bit different to yours, but as he's getting older, I'm starting to look at ways of getting my life back. I don't think anyone should settle for a life such as the one you describe.

Other people know more than I do about social services assessments for care and support (for your hubby) so I'll leave that bit to them, but in purely practical terms, I'd be looking at part-time work, with either your husband managing at home for the x number of hours a week you are out of the house or with social services providing the support that you won't be now. That way you will be working, earning, building up contacts (and your confidence, probably) as well as meeting people and just getting a different perspective on life again. Kind of a foot in the door, a foot out of the door.

Then I'd suggest contacting Shelter for advice on housing. There may be a way that your hubby can move into some sort of supported living arrangement, or into another property with support from social services. Help for you to find housing is probably going to be more restricted, but if you're working that makes renting privately easier and you could find something in the area you are currently in if that makes things easier for your son. I suspect the housing issue will be the tough bit but there are different avenues to explore and talking it through with Shelter would be a good way to work through the different scenarios, I think.

I appreciate that the situation is very difficult and that your hubby isn't a bad man, but equally I'm sure you're not a bad woman and it sounds as if your life is more restricted than his! You don't have to make huge changes overnight, but I think some advice re housing and looking for a part time job (you can get advice regarding in work benefits from the Carers UK helpline; it's usually easier to email them than it is to get through on the phone), or even just going and doing a college course if that feels easier than working at the minute, would all be steps in the right direction.
Hello Lorna
You sound (please forgive me if I'm wrong) that you no longer love your husband? He's obviously no where near the man you married.
Your life is worth living. I'm not convinced anyone should remain in a loveless marriage out of loyalty and duty.
Mum who cares has good pointers for you.
My husband is no longer the man I married. It's because of strokes and dementia though and he's now in a nursing home. I still love him and see the person he was come back from time to time. However it's very difficult and I'm grieving for him.
I honestly feel you need to take slow steps to the aim of having some life for yourself.
We only have one life. I didn't expect retirement for me or hubby to be like this.Dont get older and regret!
Dear Lorna - that sounds like a very ,very difficult situation for you.

I can only speak as an individual, with no expertise or experience, but it sounds from what you say that your husband has absolutely no incentive to do anything about his situation because, as you point out, you do everything for him that he wants and therefore he has no need to change himself. From what I've read (in popular magazines etc, so nothing more 'authorative' than that) about mental health/dysfunctional families (not necessarily the same thing!), there is a significant and crucial difference between supporting someone and enabling them.

The difference is that the former entails them taking action themselves, and you supporting that action, and helping them achieve their goals, ie, moving forwards, whereas the latter, mere enabling, simply lets them go on as is, without having to do anything else at all.

Do you think there is anything that could incentivise your husband to make the changes he would need to make to make your life with him tolerable to you?

Does he realise how deeply unhappy you are? Would he be prepared to make improvements to his behaviour, get back into therapy or whatever would be needed, to stop you being so unhappy? Maybe even to stop you leaving him?

I don't think that things can continue as they are indefinitely, can they?
Hi and thanks for replying. I know work wise I can do some work and still get carers allowance, I think we'd lose some ESA but my wages would make up for it. My worry with work is all the endless appointments, we can have three in a week quite often. And he won't go alone. Still I do understand what you mean, maybe i could sart with some voluntary work that would be more flexible.

Has anyone reading this had a social services assessment? I was told by an advice line to contact them ( my son has recently been referred to CAMHS due to depression and anxiety and is on ADs, and it was a teen advice line I rang for help, they said contact SS when I explained about my husband). But I've been a bit nervous as I'm not sure what to expect or what they could help with. I had a carers assessment once, they sent me a list of things like pottery and flower arranging classes, all very interesting and great for getting out of the house but its not easy for me to leave my partner alone, so not much help for me. To be honest I can find plenty of outside things I'd like to do, it is getting to them that's the problem. I think I've also lost a lot of confidence and it all just seems too difficult to negotiate.

I think I still love the man he was, and I miss him. But yes I don't even recognise the man I live with. He has changed so much, even down to his interests. Things he used to hate he now likes and vice versa - even things like movies! To be honest it is difficult to know, he spends most of his life staring into space or sleeping. There isn't much there to love. We definitely don;t have a marriage anymore, I'm more like his mother (except my actual children are far more independent). And I doubt I could ever feel desire and attraction for him again as I just can't see him that way anymore. I know I should find a way to end it, in many ways it might be better for him too as I'm probably am enabling his dependency. But I've spent four years fighting to get him medical care and then benefits and I'm all out of fight lol. And even when I tell him how unhappy I am he doesn't take it on board, I really do think he's happy as he is and won't attempt to make changes. Hey, so would I be if someone cooked, cleaned, paid all my bills, did all my shopping and I could sleep and watch TV all day - actually I wouldn't be, I'd be bored, but it seems to suit him. I've tried talking to him, yelling, crying. Nothing seems to make him motivated to get better. He is very self centred I think. I raised my irritation at his last psychiatrist appt, in the hopes they'd offer him something extra, but they just told him to go back to the counsellor - who he says he doesn't like so won't go. Sometimes I'll get irritated and insist he does something himself, even something simple like find a film to watch, but he makes such a drama out of it, and usually gives up so I have to do it anyway, or it doesn't get done which is fine with films but not so good for doctors appointments and stuff. He does the odd bit of housework, like washing up, and he'll do things like drive my kids to their friends (as long as it's local and he knows where they live, nowhere strange) but he genuinely thinks this is him contributing equally.
I know no one here is going to have any magical advice, but just getting to say these things out loud (so to speak) and have people respond to me is helpful and comforting. Our families are no help, I won't discuss this with the kids and he refuses to let the few friends we have know, he tells them he has a back problem and thats why he can't work (he does have one but it wouldn't prevent him working, it's the mental health issues that do that).
I think there's a big difference between 'can't and 'won't' :). If he genuinely 'can't' do something then that's when social services have to step in (but that means you stepping out!). If he 'won't' then that's his choice and not down to you to sort out.

Perhaps you could just start off with something very small? As you mention volunteering, maybe just try a couple of hours a week somewhere nearby? See how that goes and then you could add a bit more, or get a little bit of paid work - little office cleaning job two evenings a week, receptionist on a Saturday, just something small, easy to manage, ease you back into a different life? But perhaps just very small steps and see how it goes. Might be easier than a big change in any direction.
I was widowed 10 years ago, at the age of 54, and twice in two years, I cheated death, first due to a life threatening illness, second in an RTA that left me disabled (but I can walk again after two knee replacements 5 years later). This made me realise just how precious life is, and how it's really "not a rehearsal". I don't live the life I'd like to, as I have a 37 year old son with severe learning difficulties who has lots of problems with his carers (I can't care for him full time for health reasons). I've lost all four parents and a brother in recent years, and thrown out lots of things I no longer need or want. The decision making process is something like a marriage vow. Do I want to keep this thing for the rest of my life, to keep it warm, dry, clean, dusted for the rest of my life. The answer is usually "No!" so I'm gradually decluttering. So what do you really want. To stay with this man who no longer loves you, or cares for you, or cuddles you, or makes life feel that it's worth living? The answer from your post seems to be a resounding "No". This is really the only question that really matters. He won't move or do anything to help in any way, as he's OK as he is. Not needing to work, or do anything much at all. Whatever happens is entirely up to you.
At the end of your life, you can either
1. Look back on ?40 years of wasted life.
2. Look back on life up to 2016 and say "I gave it my VERY best shot" and then look on the later part of your life after 2016 and say "that took guts, but it was so worth it".

Ultimately, the decision is yours, and yours alone. I can't promise happiness in the future, or a new partner. However you would at least be able to live quietly with opportunities for enjoyment. This is the first day of the rest of your life. What are you going to do with it?
Lorna, hi again - it seems to me that you have a much more important priority on your hands than your husband.

And that is your son. Is it your 16 y/o who's developing MH of his own (or am I getting that wrong?). I do think that attending to his needs is THE most important thing for you now, far more than any concerns about your husband. That may sound harsh, but after all, your son has all his life ahead of him, and he must be able to make the very most of it, not weighed down in the dreadful mire of depression and anxiety.

Do you think, and, again, I'm so sorry if this sounds harsh about your husband, that your son is reacting to the situation at home (again, I'm assuming it's your at home youngster, so apols if it is not), because he knows something is badly, badly wrong, and is getting very down about it?

If that is so, then again, I am sorry to say it sounds like that's another very good reason for seriously considering getting out of this situation with your husband - in fact, it could be THE most important reason for leaving him - to safeguard your son from 'going the same way' ??????

You mention that you don't discuss any of this with your children - but why not? Children always know when something is wrong! I was raised by a mum with paranoid schizophrenia - and yes, my bro and I definitely knew something was wrong with her! (As with yourself, it took a LONG time for us to be able to talk to our dad about it, and when we finally did, it was a huge relief!) Of course you want to shield your children (as did my dad), and you probably want to defend their dad, but they know that things aren't good, and if you try and shield them, they will not be able to help and support you - or see any way forward for themselves. They will feel as trapped as you are feeling now.

I do therefore think that a general sit down with your children - at least with the older ones (how much older are they? Are they at college, or working, or married or what?) is an essential step. They are adults now, even if only young ones, and any decisions that you make about whether to reclaim your own life, at least has to be discussed with them, even if, at the end of the day, it is your decision, and yours alone.

I don't think there will be any quick solution to your predicament, but one will emerge in time - and as BB says, 2016 can be the year you get your life back, whether that is by leaving your husband, or 'calling time' on his current behaviour, by whatever means work (even if they aren't very comfortable ones for him!) (my own take is probably that if he wants to go on being the way he is, then he will lose you.....and will not deserve otherwise, alas??)
I cant even begin to imagine how hard this must be for you! after reading all the good advice peeps have given on here there isn't much more I can add to it except to say I agree the best way to move forward for you is to sort your own life out a little bit at a time, maybe finding an outside interest something that you look forward to each week? thing is its not going to be easy for you as your hubby will prob kick up a stink about it but just say you need some time for you so you can recharge your batteries to care for him! it makes sense that if your feeling a bit more relaxed then he will too. its all so hard for us carers because we all suffer from the same " guilty syndrome" which renders us helpless in making decisions that affect our loved ones, but.... its the only way forward and in time he will get used to some of the changes and so will you. I sincerely hope you find a solution even if its a very small one but remember anything that improves the situation however small is a change for the better. Take care. :) San