WIBU to stop helping my visually impaired DP until he's nicer about it?

[AnnonymousMum]

I know it sounds awful. I feel guilty even thinking it, but I must genuinely spend hours every day looking for things for him or helping him with tasks that I'm sure he can do with a little thought. He still goes out alone, works full time and takes care of our kids alone when needed, and plenty of fully blind individuals manage a home.

I'm working from home today and he has just come in to ask me to find his slippers. He knows I'm exhausted and juggling childcare, university and work right now and that I'm up against a deadline. I told him I hadn't seen them and he replied that I "never help" him with anything and stormed off. He then came back 10 minutes later and said "everyone just watches me struggle and noone helps me".

Last night it was the bins, I was in my pajamas after studying all day while taking care of 2 kids and was in the middle of putting our kids to bed. He is perfectly capable of putting the bins out but struggles in low light. He left it until it was dark and then told me I had to do it. I said no I couldn't, I was exhausted and in the middle of putting the kids to bed. He said "you never help me" and then called me an "a-hole".

I know he is struggling with loosing independence, but would it be unreasonable for me to say I can't drop everything and help all the time?! If he takes his slippers off he can put them in the same place each time or remember where they are surely?! I'm not going around hiding them, they're not moving!

He might struggle to look but shouldn't he make some effort to adapt to his vision rather than expecting me to become his eyes at any time he needs me?

I have a feeling I'm being an A-hole aren't I.

I have a feeling I'm being an A-hole aren't I.* *

you both are. He's struggling and probably could do with some counselling to come to terms with whatever is causing his sightloss. You're struggling with your role of being you, a wife and carer. Sit down and have a heart to heart with him about it all and go from there.

I don’t think it is right to withhold support from a person trying cope with a progressive disability, especially loss of sight, just because they are grumpy, self-pitying and prickly from time to time. I’m not saying just put up with it, but keep doing the support while pushing him to come to a place of acceptance where he isn’t punishing you for the raw deal he has been given by the universe.

I do think it is worth telling him flat out that while you understand he is struggling, and in a way grieving the loss of the fully independent person he was, he can’t turn his anger against the world on you. I would think he could access some counselling or a support group for those experiencing sight loss? Tell him to ask his GP. He needs a safe place to express his feelings of how unfair and shit it is and it can’t be you, you are doing everything you can to support him and don’t deserve that.

It’s annoying I’m sure but it doesn’t seem right to withhold help from someone who has an obvious disability he’s not being lazy he can’t see and needs your assistance . Could be seen as abusive in some circumstances .

You are both struggling and I doubt either of you is being intentionally unreasonable.

I could be wrong but isn't it fairly common for people adapting to lose of vision, hearing or mobility to test the boundaries out of fear. It's like he wants to know that you will find his slippers when the time comes that he really truely needs your help. That's been my experience anyway.

You probably both need a discussion about both of your fears, challenges and limitations as you both adapt to the changes.

I am partially sighted

It sounds like he is being nasty which is unfair and not okay and that needs to be addressed

However having said that it is exhausting doing all the "normal" things you describe him doing as a partially sighted person because we have to concentrate so hard to do juat basic tasks. If everyone is going along on the assumption that he can just carry on doing everything with no change then that's also unfair and needs to be addressed, but he needs to be an adult and use his words (kindly) rather than just stomping about in a mood

But you also talk about him adapting to his vision and nothing about adapting his environment. Why is he having to go out in low light to put the bins out. Where ever we live we add in super bright floodlighting that I can turn on if I need to go out in low lighting (being mindful of the neighbours and not leaving it on for long) etc. But again he needs to come up with this stuff too and think of these things for himself.

Im possibly a little less understanding of the having to adjust to this because I was born partially sighted. But i did grow up with parents who refused to acknowledge or adapt anything for my disability which made my life needlessly hard. So I do have some smypathy for him as it must be hard to adjust. But that doesn't excuse him being an arse

It sounds like you could both do with some therapy, him to help him adjust, you to help you cope with being thrust into the carer role. And he needs to stop speaking to you like that.

How long has he been struggling with this for? If it’s a relatively new thing for him I think I’d be more understanding. I’ve got vision issues myself and other disabilities and there was a lot of grief and depression in the early stages. It’s hard not being the person you were.

Agree with everyone else. It’s a bit of both. He needs to learn his own ways of coping such as having a place he always puts his slippers - and use those coping strategies. Rnib might be a place to start with asking for help with counselling and putting strategies/equipment in place. But also, you are being unreasonable, there is little point in asking him to do things he struggles with like bins after dark - that’s a you job now, or get it done between you earlier job. Also, doing things for him isn’t always a case of doing that task as much as putting in place ways in which either of you can do that task and directing him and maybe yourself to counselling to help you both come to terms with a different reality to that which you expected.

surely the bins can wait until the next morning? That's hardly abusive?

The bins need to be done (otherwise they won't be collected) and if he struggles in poor light then I think you should have helped.

The slippers are different - he can manage without them or invest the time looking for them - he shouldn't expect you to do it when you're working.

So I guess I'm saying that you're both being a bit unreasonable and need to work together to find a middle ground.

Adapting to progressive vision loss needs some planning and it’s not just the person who is losing their sight who needs to adapt.

you need to sit down and discuss the progress both as it happens but also in advance of it getting worse. The home environment and household chores etc need to be changed to fit your partners disability needs. Busy lives make no difference when your world is being turned upside
down. Your partner is testing boundaries he needs to know you’ve got his back but he also needs to recognise his independence doesn’t need to take such a big hit with some good planning and systems in place. It takes practice to get it right but it takes communication to even get close to making the necessary changes work. For a short time you may need to take on more while he finds his place.

Approach this with kindness OP. He’s going through a big and scary change. Your life will change too. In time he’ll find his strengths and the adjustments will become second nature but he needs to lead this. If he’s pigheaded and thinks things can remain the same then by all means have words but if it’s fear and anger at the situation he needs some patience and support. Ultimately you’re his partner not his carer but you need to be adaptable and supportive too.

You’re both being a bit unreasonable, but I’d say you’re being a lot more unreasonable. Yes, he’s been snappy with you, but frankly, I would be a bad mood if I was going steadily blind. It must be so frustrating and distressing for him

Sounds tough OP I think you both need to have a sit down and chat about this, on one hand its very frustrating not being able to find something, but to expect you to stop working to find his slippers is unreasonable, and the bin conversion should have gone 'oh shit I've forgotten to put the bins out and now its dark, I will come sit with the kids if you could pop out and do it?'

He needs to put processes in place to cope and probably needs some councilling to come to terms with things. I'm visually impaired myself and the only thing I can't do is drive (although there are a lot of things I csn do badly :P). Look for local support groups and talk to charities who will be able to help with gadgets and tech to help him adapt.

You both being difficult...however it's vvv hard to get used to a life changing event. You being more nasty op I'm afraid. Put yourself in his shoes...

It must be really stressful and distressing for both of you and therefore not bringing out the best in you.

You will both need to adapt, but yes, it's him who will need to make changes to the way he manages things e.g. leaving his slippers in the same place.

When everyone's less tired, can you have a discussion around making a plan for the things that are currently presenting challenges?

@AnnonymousMum

someone saying I never help them or calling me an arsehole would get told to go & sort themselves out.

i get that it's life changing for him & id be scared & grumpy too, but it's not fair to speak to your partner like that when they're adjusting too!

it's not going to be the life you planned either.

how long ago did it start?

given he's going out alone, still working etc does he still have a reasonable amount of sight (like can he see well enough to find his slippers if he does it methodically?)

before his sight loss started, was he demanding, self pitying & rude or is this all new since his SL started?

He definitely needs to start organising himself better (with help from you/the kids) everything having 'a place' and being put in that place, so he knows exactly where to find things, and to keep the floor clear (how old are your kids as they're going to have to learn not to leave things lying around. If they're very small you'll need to restrict where toys are played with & ensure they're put away).

Will he retain some sight or is it expected he will go completely blind?

it's making me feel panicky & like I'd want to cram as much in as I could now, to know what people are talking about later when I can't see things.

I can see how it's frustrating if he could have taken the bins out earlier, but then complained it's too dark. It wasn't a surprise that it is going to get dark.

I appreciate he has a lot to get his head around, but realistically OP cannot take the load for everything. I can imagine that it would really hurt if you're giving your everything and then your partner says that they aren't being helped at all.

These tasks can be done, but with some adjustment (i.e. slippers stay in one place if not being worn, take bins out before it gets too dark).

I agree with PP about making his life easier by practical solutions such as bright lights, and to agree tasks that he can do.

I actually don't think you're being unreasonable OP. I am physically disabled, and a lot of what he appears to be struggling with can easily be managed with a bit of forward thinking, and organisation. I think that he's probably feeling sorry for himself and taking it out on you, and that's not fair. So I would sit him down, talk through the things that he struggles with, and come up with a plan together as to how he can manage. Three years after becoming disabled, I was finally given the opportunity to go to a rehab centre, to cut a long story short, it was a complete waste of time, as by then I'd had to learn to adjust and do things in different ways to the way that I had previously done them. There are lots of things that I do, that people marvel at given my condition, but I always say 'Where there's a will, there's a way', and it's pretty much true. He needs to find a way to change his mindset, and if he can't get assistance with this on the NHS or whatever, then he needs to sit and think about how he can do it himself.

He doesn't get to be an arsehole, and it is fine to tell him "You do not get to be an arsehole. I do NOT have to put up with that."

But...he can't see. Things that you can do quickly and easily are exhausting and difficult for him. Yes, he should think ahead and have better processes, and no you don't have to do everything because he has low vision, but I get the feeling you underestimate the impact of his disability. It is true that completely blind people can manage at home, but it takes years of training and a very fixed environment.

Has he/you both had any support from local groups on how to deal with sight loss? RNIB have lots of resources and can help you find more local support.

www.rnib.org.uk/living-with-sight-loss/

The second paragraph is absolutely what you should do. Good luck.

@AnnonymousMum I have experience of this from both sides- I grew up being a carer for my mum, until I became disabled and now I need carers.

Both situations are hard in different ways, and it’s absolutely normal and understandable for you to be struggling.

I think everyone’s being unreasonable - he shouldn’t speak to you like that and should appreciate your support but refusing to help him when he can’t do it himself doesn’t seem fair.

You need to sit down in a calmer moment and talk about how life needs to change. If he struggles with low light you need a bright automated light, if he needs to be able to find stuff it needs a home and the kids need to not move things, etc.

I have hearing loss and ADHD, It’s really exhausting being disabled because everything feels so hard when you just want to be independent. My partner and I have built our home to make my life easier - a loud phone based doorbell, clear storage systems, automation, etc. There are so many great solutions to make life easier now, I was worried about being a mum but I posted on her and got advice on baby monitors that’ll help.

I don't feel I can have an opinion either way, because it depends on when and how this happened to him/how quick, etc.
(Not helpful, I know)
But I'm posting to say I think you're brave and honest to post about this @AnnonymousMum

The posts above are interesting. I hope it gives you stuff to think about

Those saying about lights, we installed extremely bright automatic lights which would have lit the driveway enough to see the bins. I guess that's part of why I'm frustrated.

YANBU OP. Yes, he is partially sighted and that is hard. It’s awful for him. BUT - that’s not your fault. It sounds like you’re doing an amazing job keeping everything going as it is. There was a thread yesterday about someone whose DH couldn’t cope with their disability. It wasn’t a nice story and everyone was quick to criticize him (rightly so). However, as the partner of someone with a disability, I totally got where he was coming from. While none of this is the fault of the person who isn’t fully able bodied, the strain it puts on the partner is unimaginable at times. It’s not just the additional physical duties, the driving, all the other tasks they can’t do and you make up for. It’s managing their feelings and emotions around it too. It’s bloody hard. We’ve had times where my other half has been almost jealous of me, my energy, my zest for life. There is no empathy at all for the fact that the disability that has ruined their life has also ruined mine.