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?

Definitely second the automatic suggestion, I'm sure you know already that if he gets higher rate mobility PIP, this can used to fund a motability car. OT visit also a very good idea but it won't address the underlying relationship issues.

I am afraid that sauce bottles definitely belong in the fridge door seriously though, it's clearly not about the actual bottles, that's just an illustration of the problems isn't it. Being completely honest, if your relationship is so bad that you find him so irritating, and an invasion of your space,it sounds like it might have run its course. I know this sounds very flippant after 20 years and a DC together, but if you had a flat mate who annoyed you so intensely, you'd move out or ask them to move out wouldn't you?

I think the status quo sounds intolerable, you don't sound as though you're making each other happy. I would try and separate the disability issues from the relationship (I wouldn't want my DH to stay with me simply because of my health, or that I'm dependent on him etc) and you have two options. Stay and work on the relationship, or end it. Easy to say I know, but I strongly believe everyone deserves to be loved and cherished and supported. you both have many many years of life left, it's worth thinking about how you want your future to look.

I would think the one key question is, if this is salvageable, and do you want to try to salvage it? I've just re read all your posts and you don't say you love him. IME, a relationship has to be incredibly strong to withstand the pressures of permanent disability. It's difficult to explain but I think it takes, not work exactly, but a lot of thoughtfulness to stay as a "romantic" (sorry!) genuinely loving couple, when it's so easy to slip into carer/dependent roles. I'm probably explaining myself really badly!

You cannot blame the disability.
It doesn't define a person, the person goes through it.

Some days, it takes me all day to do the dishwasher, some days I cannot pick washing of the floor - some days - I am so mentally tired from the pain that I do not think to collect the dirty cups from upstairs or empty the bins. I think maybe you need to find other sources of help for your husband to make your life a bit easier and you will enjoy your time together more.

Is there anyway, you can go out once a week with friends at all, maybe explain to your husband you need to have some unwind and relaxation time.

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You should not need to make space for someone to be messy. That's like saying it's ok to stab someone as long as it's in another town not ours. Extreme but the truth. Respect ing another means comprises for sure but dropping snotty tissues on the floor and expecting another person to pick them up is damn right rude. The idea of a bin near the infirm seems like a good idea but another issue about being a carer is not feeling like you have your own space. You can't live with someone 365/24/7 it's not healthy. We all need a break and our own interests. At times I have considered leaving my partner due to his situation but instead I had a room built in the garden where I could escape to. This is kinder to him and better for him. Of course as Julia Roberts says to Richard Gere when he says he will buy her a condo in Pretty Woman and she retorts that's just geography, the same is true with getaways, respite and privacy in the garden, you still have to come back to reality. That's what we have to face, how do we get through reality. Can I suggest you use a three phase approach: You are entitled to your feelings and you need to communicate to the disabled partner what those feelings are, and he can do the same. 1) describe the feeling as a physical sensation e.g. I feel sick, my head hurts, I want to burst into tears, I am angry inside, 2) describe it using an image, I feel sick like I did when I had e-coli, or when I ate that prawn, its like a black cloud which will burst into pouring rain, or red rag to a bull, and 3) on a scale of 1-10 it's currently a 10, it can't get any worse. Then it's the other partners turn to do the same. Then gentle dialogue. Have a go. But also be compassionate to yourself.

I think it comes down to some communication and some practicalities. When I'm in pain I can be very messy because I can't get up and do things. As such I need a bin next to where I'm sitting. My OH doesn't think to bring one because your partner can't think of everything or work out what you need sometimes. It took a while for us to work out - I just needed a bin nearby during periods when I wasn't mobile. I find it harder the other way round, being female - because my standards aren't kept up in the house! It drove me mad seeing the kitchen sometimes - nothing cleaned properly or done my way. But - I got to just accept it and think it's just how it is. I've also had times where we've had a row because I've said I'm in pain and OH didn't behave any differently and still nagged at me about something. Which is harder to take when you're in pain. The other person can hear it but can't understand what you can't find the words for - ie - I'm struggling right now so can we just keep things nice please.

I don't know if you're still in this situation - but - I don't think your partner IS independent of you. He's not managing and is not telling you. So he just gets messy - it's pride - rather than say can you help me with xyz,

Have a sit down talk. Say we need to work out a routine that works for both of us so we don't argue. And we need to work out what I need to help you with and what practical things will help you be more independent and make me less tetchy about mess. So a bin near a chair is one thing. Get some aids and gadgets. I now use a powerchair round the house which has made a huge difference. And have "litter pickers" in every room.

There is also the emotional side of coping with pain. It can get depressign and people stop caring about daily things. So he maybe needs to have an outlet like someone else to talk to about it once a week. Counselling maybe.

As for doing things on your own - just do it. I don't expect my OH to stay at home all the time or take me everywhere. He does some things independently, goes out (not at night but during the day). We have to co-ordinate in case it's a day when I need him to do something here - eg if there's a medical visit. I have ring doorbells so can answer the door from my phone if necessary though. Then we plan when we're going out together.

At a guess I'd say he is hoping you will think of things so he doesn't have to ask. Sometimes it's really hard to ask for help. Going out together is nicer if you don't do it all the time. Make a kind of date outing - eg going to a cafe together - or out for lunch. Not just routine stuff like food shopping.

Maybe you need someone to talk to as well. But get a routine sorted between you. One day a week you go and see/go out with a friend. Find some new activity you can go to together.

It's not easy for you juggling everything. But one thing I will say it is much much harder when you both get something wrong with you! If you suddenly had a serious condition as well for example. We've been there, and I had to get very organised and get some help organised temporarily and we were both stuck at home for weeks as he couldn't drive for a while.

You can also have your own spaces in the house. A bedroom is my study area/office. We phone each other from different parts of the house to have some space sometimes.

There are people who are in pain and then there's your husband.
From the diagnosis he gives, it would be expected that he has some pain, but not quite as he explains it.
From your words, you are running around after him. I bet he is loving every minute of that!
I think he has worked a charm on you to the point where you feel that you have to do everything.
I would tell him that you are out for this evening. Go and enjoy your life. I can pretty much bet he is taking the piss, I cant do it, you'll have to. I think you need to think about boundaries and be harsh...and sometimes walk away. He will always achieve what 'he' wants to. More importantly, you need to achieve what you want to.
When you realise what a leech is, may you get your stuff in order and leave.