Relationship problems when your partner is disabled

[FreckledHen]

I feel so miserable at the moment. I would really like to talk about our relationship problems but I'm worried about being judged. Does anyone else feel irritated/appropriated by having their partner with them all the time?

We're not married Lweji. We have a 13 year old DS together though and we've been together since the late 90's [old gimmer].

I find it soooo difficult to tell him that I'd like to go out alone. He drives and I don't so he's used to offering lifts and up until recently I've always been grateful.

My dh was my carer. We both found that a very important part of his role in caring for me was to 'chivvy' me along. Tell me what was acceptable behaviour, enforce rules, require me to be considerate and caring of his needs, set his personal boundaries.

Sometimes every partner needs telling what is acceptable behaviour. Relationship's can get into a rut where selfishness seems to be acceptable.

If he is flying into rage's then perhaps he is depressed? Not coping with his symptoms/dependance/feeling guilty at making such a mess. Maybe he needs tablets or interests of his own.

You do sound a bit fed up with him, that could be due to resentment of him. I think it's worth resetting some boundaries for both of you.

I'd be having a gentle yet firm talk with him. I say this as someone who needs care, it's the kindest thing to do.

As a pp said he does need to show you love, respect and consideration. Sometimes every partner needs reminding of that!

How awful for you.

Mine is a similar condition so I can understand slightly that someone might bury their head in the sand. How long ago was he diagnosed? I also think sometimes people don't realise how debilitating these conditions can be, particularly if they are not that "unwell" at diagnosis. I also know they can be hard to diagnose and some consultants can be quite "vague" about diagnosis as there are so many overlapping conditions. Certainly I have become much more disabled over the last couple of years and wasn't expecting it at all.

That being said, the way he is, and has, treated you, cannot be excused, disability or no disability. He has treated you this way for so long it doesn't appear he wants to change. Do you love him? What do you think you would like your life to be like in future, do you think you would happier living separately or together?

I know it's very hard living with someone with a disability, you need to have a very strong relationship for it to survive I think. Our lives are massivlely different from what we expected.

Agreed with PurpleHair about someone being in denial of a diagnosis - and especially late teens - early 20s, when everyone is doing so much and a person lacks the life experience to understand what long term effects it may have - and it can just be too much to think about in detail, how much one could actually miss out on, until it actually hits. Did we all say everything to partners at that age we responsibly should have done?
I wonder if he feels guilty about that somewhere, about you getting a different life from the one you signed up for, and has also buried his head in the sand about the guilt and its effects too.

I have a feeling he could do with some therapy. Pain management centres sometimes offer counselling. Given that he can still drive and is able to consider some types of work, it sounds like his resentment is making him miss out on opportunities and life he could still, for the moment, take advantage of, even if it's for a limited time. Wondering what his prognosis is, does he feel a clock ticking on his remaining abilities?

At one point I knew someone who'd been recently diagnosed with psoriatic arthritis - it seemed a particularly horrible condition, she seemed to find ways to manage it but her life changed quite a lot quite fast.

Given the ever decreasing government provision for disabled people,
I would consider it a slightly different matter leaving a partner who has a disability from leaving a healthy person. (Similar to another current thread I'd think it right to try and negotiate and arrange more around things where possible live with unconventional arrangements, to try and get some space without leaving so readily). However it sounds as if your partner may have enough to live on via this company pension which makes it a somewhat different matter.
Seeing news stories about disability benefits problems - there but for the grace of god/my partner go I, worrying if he will end up like that one day - might also be a source of stress and anxiety to your partner which gets bottled up in his avoidant ways of coping with stress.

havemercy he was prescribed anti-depressants when he was newly retired and he said they gave him strange visions. I will just come straight out with this and hope you will all understand how difficult it is for me to address anything with him.

TRIGGER WARNING. Distressing content below:

He said that after he took the a/ds he had a vision. He was in his car and he visualised the 3 of us (DP, DS, me) slitting each others throats and seeming to enjoy it.

I don't know where to go from that. I don't know if he made that up or if it was real. I just find it extremely upsetting. That was 5 years ago and we haven't spoken about it since.

But he could get alternative drugs.

Some ADs can worsen depression and suicidal ideation in some people. Did he not discuss this with the GP? They could have tried a different type of AD as they all work in different ways.

I can't understand why, if he's fit enough to drive and to seek work, he can't walk into the kitchen and get a bag to put his snotty tissues in, or how that would affect him taking a t-shirt off a hanger so the hanger ends up on the floor?

He clearly has a significant illness, and I understand his pain levels may fluctuate from day to day and even hour to hour. However it does sound like he has allowed laziness and disrespect to become habits, and has developed this "Hen will do it for me" attitude. Ironically, this is probably contributing to his depression.

Regarding going out on your own, could you learn to drive? It would give you much more independence, and presumably there will be a point in the future where he cannot drive any more, so it seems sensible anyway.

It's very understandable for him to be wary of medication then.

What does he say about counselling and therapy?
This is a situation where talking therapy makes sense, it's not just a low mood regardless of external reasons - being resentful of having a disability at an age when your peers are in the prime of their careers is understandable, and he also needs to learn to communicate better with you and stop, as others have said, putting his head in the sand.
He should be encouraged to go for some counselling.

And v v much agreed about you learning to drive.

Do you mean for his depression Lweji? I don't really want to broach it with him after what he said last time. It really frightened me.

For his arthritis he's on a whole load drugs; tablets and injections. And he makes a whole load of fuss about taking them.

Yes, for his depression.

If necessary, he could be followed more closely to check side effects.

Sorry, cross-posted with lots of you.

I don't think he spoke to his GP about the vision. I just remember arguing with him that he was refusing to take the anti-ds and then he blurted out that horrible thing. After than I didn't want to discuss it any more.

He's always drove for a living pocket. He's been a forklift truck driver, a courier and a bus driver amongst other things. The only difference now is he can only drive an automatic as his left leg is really bad. At the beginning of the year he was offered a job driving buses again but he turned it down to do private hire work starting last month- except it hasn't started at all.

I don't really care if he goes back to work. We cope reasonably ok on his pension and I'll be back in work soonish. I just want him to have some interests that take him outside of home.

He had some form of counselling when he first retired. It was to do with social anxiety. I don't think he really got anywhere with it though. It was another thing that he wouldn't discuss with me.

I take on board what you've said about learning to drive. I know I need to do it. I'm going to google lessons in my area now and book something for next month - no money until then,

Ok, 2 hour driving lesson booked for 3 August.

I have psoriatic arthritis.

Has he spoken to the hospital about the pain he's in? There's a lot that can be done; they really don't want you in pain. He should be taking regular exercise, too.

It sounds as though there are many more problems in the relationship than his illness. The way he is behaving would make anyone want to leave home.

Hi Imperial sorry to hear you are suffering from the same thing as DP. He was coping ok up until the really hot weather started. I think that is what has made me feel really down as the warmer weather usually helps him a lot. He has a GP appt. for 3 weeks time and I imagine his hospital appt. can't be far behind that. I will make sure he tells the GP that he's experiencing really bad pain as I think he can liaise with the hospital.

There are lots of problems in our relationship. I think if he hadn't become disabled we probably would have split a few years back. There have been a lot of positives to us staying together though, i.e. we had to move and DS is much happier here.

I think I need to get some independence and learning to drive would really do it for me. I'm terrified for August 3rd but I've paid and nothing I can do now.

Learning to drive will be really great. Make sure you change instructors if you're not happy with the one you start with. Often it takes a couple of goes with someone before you can tell whether it's going to work out. The sense of freedom once you can drive is incredible!

Thanks Imperial.

I'm a bit worried now. When I booked my lesson it didn't occur to me that I'd have to have a provisional. I thought of it straight afterwards. So I've been on the .GOV site and paid my money and they are going to send me a pack through the post. Upon googling provisional licenses they have photographs. How am I going to get all this set up by August 3rd for my first driving lesson? Should I phone the instructor and delay or is it likely I'll have my licence by then?

You have 2.5 weeks. Maybe it would be better to put it off for a week if you haven't received anything by now. I'm not sure though - I'm sure some new learners will be along soon.

I think learning to drive will be great, don't know about the licences though, sorry.

How has your DP reacted to you learning to drive?

He does sound as they he may be depressed, but it's very unfair on you that he doesn't seem to be taking steps to address his MH issues. The reaction to the tablets sounds terrifying, but I do know thoughts like that can be a side effect. I have to take (I think this is the right word) trycyclic anti depressants, they are actually for nerve pain but have helped my insomnia immensely, which has had a huge beneficial effect on my MH - but this may be the improved sleep.

From your posts, what stands out to me is that his behaviour is very selfish - would you say he is a selfish person generally? I think with chronic pain it's so easy to become self centred as you are focusing on yourself a lot, I do find it's an effort to remember other people but with my family and particularly DH (as he does so much) I try and keep their well being at front of my mind too.

If he isn't making any effort to think about your well being, well, it would make me question separating, very honestly. Your partner should be the one who always has your back and does try to support you, to their best of the ability. It's the effort isn't it, can he put the effort in?

OP my son recently applied for his provisional and received the pack in about 3 days, so I think you will have time. Well done on booking your first lesson! It's a big step but a good one.

DD got her provisional recently. They can take your photograph directly from the passport database. Was that not an option on the online application you used?

Purple I told him this morning and he didn't say anything at first. A bit later he asked why I hadn't mentioned that I was thinking of booking lessons and I told him, honestly, that it was a spur of the moment type thing. Later he said that he was sure I'd pass and that it would be good for me. I can understand if he's feeling a bit put out and as long as he doesn't try to put me off it's fine.

I don't think he's selfish exactly. He doesn't care about how things look as long as they are functional, so tissues strewn all over the floor is fine because he (or I) will pick them up all in one go and that saves numerous trips to the bin. He has this sort of mentality about lots of things and it makes him very difficult to live with. He has always been like this but when he was working we both recognised that the home was my 'zone' and I had the right to impose my standards in it. The home is not 'my' zone anymore because he's in it virtually 24 hours a day. I honestly don't want to relax my standards at all, let alone to the degree that we're living in a filthy hole.

This is what I meant by appropriation in my OP. He's changed things at home for the worst. One example is of him fucking about with the contents of the fridge. I have asked him not to rearrange the sauce bottles so that they are in the door as when I open it in a hurry they jiggle about and occasionally one has fallen out and smashed on the floor. His answer is to open the door slowly and is adamant that the bottles should be in the door. It infuriates me. I don't want him buggering about with things that work perfectly fine just because he feels the need to be in charge of something again. I feel that it's his responsibility to create a new life, studying or doing hobbies perhaps, not just take over my life because he doesn't know what he wants to do.

I could go on about all the irritating things he does for a very long time.

Thanks Pocket that's good to know.

Maggie I didn't see anything like that online. I hope I haven't done it wrong. It was a bit confusing because I did used to have a provisional licence as I started learning about 20 years ago. I sent it in for renewal when I moved and it was returned because they'd changed to photo card licences. I never bothered to get the photo done so I assumed I'd have to reapply from scratch. I'll give it 'til Monday and if nothing comes through from them I'll give them a call and see what's what.

FreckledHen

I do think you have to take some stock here.
Some changes he has introduced surely can be lived with. Such as the bottles on the fridge door.
And I have already suggested solutions for things like the tissues. Have you/him implemented any solutions to make his life easier when it needs to be?

It sounds like you are very annoyed with him for making your joint home also his space, instead of following your lead. Could those little annoyances be spilling out to other areas too?
Sometimes we do need to compromise on little things.

Being in each others company 24/7 canbe very hard. My DH suffers with a form of arthritis and is currently out of work, he's driving me mad!
I'm off sick at the moment and unable to drive, am on crutches so can't walk or get a bus anywhere either.
Learning to drive may be a lifeline for you - good luck!

you might want to learn to drive in an automatic as it's a lot easier; less things to worry about. there are plenty of automatic cars available.

talk to your gp, about how stressed this iamaking you feel.

get someone to come in like an OT from local authority and assess his needs so if for example he needs to throw tissues in a bin the ot will recommend you set him up with a bin close to his chair.

it isnt rocket science - but it might come better from an profresional if you worried about telling him

if he cant get up to make himself tea or get a drink you can just make sure he has water and snacks to hand then go out.

if he cant get to the toilet without you and you go out you can ask OT for a commode.

there are lot s of practical ways to manage this so you do not need to be his servant and slave.

if he needs one to one assistance in the day then he can apply to get help with this , has he applied for PIP? if he can stand in a door frame and rage at you then it sounds like he can manage for himself in the day?

you are allowed and should have your own life...if he needs care during day while you go to work etc then apply to ss to get help with that.