Rant - coping with disability and partner

I'm on the other side of the fence, been my husband's carer for over 30 years. I think sometimes he can assume I should do this that or the other and doesn't seem to recognise that someone who isn't disabled can also feel rough, have a migraine, be tired or just fed up. The biggest difference is he has no choice he has to live with his condition, I choose to stay despite the problems but I often feel I get no brownie points for what I do.

Carers have wants and needs but are often overlooked.

There seem to be 2 kinds of DHs here. Ones who have died and have been all loving and GNs miss them dreadfully and would care for them again in a heartbeat. And ones like the OP's and lemontart's who are not easy to live with, not compromising and selfishly almost going out of their way to make the GNs life unhappy. What on earth is the answer to the 2nd type of man and marriage. At this stage of life divorce would be hard work. Marriage guidance counselling for the OP? It seems such a shame and a waste to spend the last decades feeling so unhappy.
It's not helpful to say to the OP that she should cherish him blah blah as he won't be here for ever. When she may be thinking ...if only.... and then I expect feeling guilty.
But his behaviour could be regarded as controlling and verging on abusive. It's something we never expect to happen at this end of a marriage. I have a friend who in her mid 80s was then widowed and was extremely happy on her own in a wardened maisonette for several years. She was disabled but managed well on her own. Had a similar DH who was neither loving nor caring.
You need to talk.

HelterSkelter1

What can you do gentleshores? If you can't get past this one, and I understand from experience what that means, who can you talk to about it? I am not religious, but if you are is there someone at your church to talk it over with? Have you talked to him about exactly how it has made you feel? I would be upset about an undiscussed and unagreed change to my garden or anything else. He is not showing a lot of love to you or is being a bit dense.
I do sympathise, sometimes the straw does break the camel's back and it can often be something relatively minor. You need to get what you want to say in order and say it to someone. Or write it down for him to read.

Writing it down is a good idea. Yes he just makes excuses and dismisses it as a big thing if I try and discuss. I can't quite put into words what a big dealbreaker it is. It involves lies, doing what he wanted, despite knowing I didn't want it. He started doing the odd thing a couple of months ago and I had a shock then and said what are you doing?! We didn't discuss anything. So he stopped. Then when I was unwell in bed for three weeks I now find he has carried on and changed things even further. He says he's improving it. In his mind maybe but I had asked him to leave it as it was and as it had always been. And he thought better. And yes it makes me want to leave every time I see the garden through the window now - it's very upsetting. However grandson lives with us and it would break up his home. I have put up with things before for this reason, but I'm not sure I can contain my emotion over this one.

HelterSkelter1

There seem to be 2 kinds of DHs here. Ones who have died and have been all loving and GNs miss them dreadfully and would care for them again in a heartbeat. And ones like the OP's and lemontart's who are not easy to live with, not compromising and selfishly almost going out of their way to make the GNs life unhappy. What on earth is the answer to the 2nd type of man and marriage. At this stage of life divorce would be hard work. Marriage guidance counselling for the OP? It seems such a shame and a waste to spend the last decades feeling so unhappy.
It's not helpful to say to the OP that she should cherish him blah blah as he won't be here for ever. When she may be thinking ...if only.... and then I expect feeling guilty.
But his behaviour could be regarded as controlling and verging on abusive. It's something we never expect to happen at this end of a marriage. I have a friend who in her mid 80s was then widowed and was extremely happy on her own in a wardened maisonette for several years. She was disabled but managed well on her own. Had a similar DH who was neither loving nor caring.
You need to talk.

I was thinking about sheltered accommodation flats last night. But we have a child living with us.

welbeck

so are you reconsidering the relationship, OP ?

See above. There have been other things happened that could be resolved later and made up. This is something very visible and can't be put back how it was now. I tried to accept that he just wanted to do this and it was keeping him happy having his own project. But I can't because a) it really hurts b) it hurts just looking at it - the garden I loved is gone - it's like a neighbour vandalised it or something. He took that from me knowing I wanted to leave it as it was. He is also incredibly stupid. What he has done means there is even more work to do than before now. I was the only one who ever did any gardening, I can't do it any more so there are less plants now and just grass to cut - but he's demolished something and seeded it so now there is more grass to cut! I don't think he will ever understand my nurturing feeling of the garden as he's not interested in gardening - just having projects.

I'm still in shock at the total disregard for my feelings and the lying (saying he wouldn't do any more and then did).

I too agree with Cossy. I have multiple comorbities and often struggle.
However, I look extremely well and you would never realise how ill I am.

The fact that I am stubborn, bolshie independant and not seeking support when I should, means that my husband doesn't always realise realise that I could do with help.
It is my own fault, he is not a mind reader.
Also, I think he finds it difficult to see me so vulnerable and is afraid of losing me. He is very healthy and active and probably has no idea of what I go through, because I do not tell him.

However, there are occasions when i think I have hidden things and he suddenly takes over.
Today I came back from an appointment to find all the housework done and washing on the line.

I wouldnt change him for anything.

Wouldn't it be helpful if we could hear the husband's take on things.

Lemon tart,how I feel your pain.I was always the “doer”.
Now with heart failure,cancer and three hip replacements I am a shadow of my former self.
gentleshores I empathise and concur with posters who urge you to involve family and friends.Regret I have no practical advice.I hope that the situation improves soon.

Mine treated me the same just a maid, cook, bottle washer abd nurse. When we seperated after 23 years he hadn't even a clue how I took my tea. I wonder who is putting his socks on for him now😁😊🤣

So very distressing for you. I am not in your position, but can understand how you feel about your garden, which you have loved and maintained over the years. Gardening is my main interest, apart from family, friends and our dog, so I would be totally distraught if my OH spoilt it, knowing how important it is to me and the pleasure it gave me just to look at it from the window. How old is your grandchild? The advice already given here to involve your family and friends is very sound, and I would urge you to do so very soon. 💐

I think your husband is possibly in denial and is worried, you will deteriorate. He is possibly used to you running the house, and worries what will happen when you can't. Have you had a care need assessment. It would be a good idea to get one and have your husband present when you speak with the assessor. If possible explain it so them in advance and try to get a face to face visit if at all possible depending where you live. You could also take him with you when you next see the GP, the more aware he is the better. If you can afford it, get a little help in the house too, which will take the pressure off you both. Are you able to share what sort of changes he objects to, and how the affect him, it would be easier to advice. Does he consider himself a carer? Do you consider him a carer? Husbands and wives often don't but there is so much support available to unpaid carers now, but you need to know where to go for it. Thinking of you

I am waiting for new knees, now hips have flared up, stiff hands & feet since first covid jab- my hubby is superb, helps me upstairs & puts my pants, sock & shoes on- I try my best but I couldn’t be with him, if he didn’t understand my issues & moaned about it & also couldn’t have around just to be used as a carer, if I didn’t love him

what age is the child.
do you have a SGO or is he just staying with you for a while.
i think you need help. urgently.
all the best.

could you talk to your GP ?

"But I feel like kicking him out right now. Except I can't because I need him to help with things"

Maybe he knows that's how you feel and feels like he is being used. I'm my husband's carer and I'd be devastated if I thought the only reason he was with me was so I can look after him.

Delia22

I can sympathise! I had a mild stroke four months ago and although my disabilities are minimal DH can make me feel helpless and hopeless! For instance,when we were going to the pharmacy today,with limited time till it closed,he said "I,'ll go because I,'ll be quicker" ! In the end we both went AND got there in five minutes,ten minutes before they closed! I said nothing!

When we are ill we are more sensitive to what is said to us. I think under normal circumstances this might not have worried you, it certainly would not have me. You are possibly reading too much in to it, and I bet he would be gutted if he realised you took that to heart. He was after all trying to help. When things like that happen you should speak about it, explain how it makes you feel, by using this words, in other words, you realise it is your problem and is not blaming him, you just want him to know it affects you in a bad way, then perhaps apologise,. I have been a carer for the last 20 years and at times it is like treating on eggshells, which is not easy and puts a strain on the relationship. Talk, talk and talk.

Thank you. There are some very good points raised. I am not too bad. I had a period of not being mobile at all for about 3 weeks - which was when he started the garden project. We did talk today a bit. It seems a bit pointless telling someone how hurt you feel by doing it without agreement - because surely that's obvious. And while rationally I can see he started doing one little building/repair job and one thing led to another and he decided to extend that area - he also knew I had said I didn't want to change a certain area of the garden. It felt like "out of sight out of mind". It wasn't easy but have had an adult discussion about it and I said - do we really need a bigger area of grass? Isn't there enough lawn to cut already? And he saw my point. I think. But he can't undo what he's done and I'm still very unhappy about it. It's as if - well she can't do anything in the garden now so I might as well do my own thing. But nothing said.

Grandson is 16. Not a young child but still needs support and stability. He only has us. No other real family left for either of us as well. A few friends but not that close.

I have gradually got a bit more mobile in the last few weeks and can potter round doing the odd thing, so no he's not actually my carer, although I can't cook an entire meal now without help chopping things. I got round that by buying frozen chopped onions partly. Or standing too long. So it's mainly walking restrictions but also bending and my arm one side.

He will look after me when I've been stuck in bed for 3 weeks at a time (which has happened 3 times this year) by bringing me food, which I appreciate, but that's the limit. Mind you I don't ask for any other care and just manage the best I can. He also lifts the mobility scooter in and out of the car. And does the hoovering. So he does help. Which he wouldn't do when I was fit!

I am still the same person, and behave the same, just can't walk much.

It is a point that he might be worried about what might happen. I've been wanting us to move for a long time to somewhere easier for me to manage - but he doesn't want to. I'd just about given up on that one. He has more emotional attachments here than I do but we really do need to move before we get to the point where neither of us can cope with it.

And yes I have had moments of wanting to move on my own - but not really - we have a family life here.

Part of the issue is not getting any support from Doctors - that's been ongoing for the past year. But OH sometimes just doesn't get that I get exhausted easily and am not superhuman.

The garden is not untidy - the lawn gets cut. It's mainly just a few shrubs and bulbs now. He does like building projects and if I let him he'd probably rip half the house down and re-model it - which is why I keep saying we need to move - because it does need work and I really couldn't cope with living in a building site now - at this age and with pain and restrictions.

Thank you yes I had been thinking of getting someone in to help once a week with cleaning. And for someone outside to come in and understand perhaps. So not just a cleaner who comes in and cleans but someone who stops for a chat as well.

That might change the dynamics a bit. We disagree about a lot of things these days. Money, priorities etc. It's difficult. I know I have needs that aren't being met (living somewhere closer to things and in a more modern place ideally) and he doesn't want to change anything. So it muddles along. I don't think he'll change his mind about moving.

But the garden completely threw me because we'd talked about it before and I said I like it how it is. And that was completely ignored.

During the talk today he said he'd left most of the bit I liked - well yes but it looks awful now part of it isn't there. I asked if he was wanting to improve it for grandson for the future and he said no not really. I think he was just enjoying having time to himself and a project while I was stuck in bed.

I'm still quite gobsmacked - he's even added some makeshift fencing somewhere which I don't like either - it blocks the sun from the house windows. I did say to him - people get divorced over things like this - it's a betrayal of trust. He's said sorry a few times and he's prepared to discuss it now and let me have some input;. A bit late.

I am totally confused as to what the OP's husband does that makes it unsafe for her. It sounds like this is about the garden. I appreciate you love your garden, but how does he make it unsafe for you. Does he do things indoors as well, or is this a case of picking your battles, once we start seeing faults, it gets deeper and deeper very quickly. Could you perhaps remind yourself what is is or was you really loved about him, which made you want to marry him and then look for that more than his faults, unless his actions really makes life unsafe for you. Your poor GS must sense the atmosphere in the house. There is I am sure, a reason why he lives with you, he should be happy with you, feel safe and be in a good family atmosphere. How old is he?

If cutting the grass is a challenge have you thought of getting a robot mower. I'm thinking about it as a friend has one and it seems great. I'd just need someone to sort out the wire you bury to mark the boundary. It's quite nice sitting enjoying the garden and watching the robot mower do its thing.

both the other residents should be sharing the tasks, maybe the 16 year old less so, as presumably studying. i think you need to just go on strike.
it sounds damning with faint praise to say you were grateful that your husband actually brought you food when you were confined to bed.
sounds more like a neighbour down the street.
what was the alternative.
be quizzed by a coroner. ?

win

I am totally confused as to what the OP's husband does that makes it unsafe for her. It sounds like this is about the garden. I appreciate you love your garden, but how does he make it unsafe for you. Does he do things indoors as well, or is this a case of picking your battles, once we start seeing faults, it gets deeper and deeper very quickly. Could you perhaps remind yourself what is is or was you really loved about him, which made you want to marry him and then look for that more than his faults, unless his actions really makes life unsafe for you. Your poor GS must sense the atmosphere in the house. There is I am sure, a reason why he lives with you, he should be happy with you, feel safe and be in a good family atmosphere. How old is he?

This is all about compromise, what he likes and you like, at least you are now talking about it, and can hopefully do so in future before any changes are made. It is his home too, so he has to have an input both to indoors and outside arrangements obviously, as you do.
I would be more concerned about the moving aspect, this is where I think you need help with explaining to him why it is so important you move before it is too late. What would he do if you died and he had to downsize by himself. Perhaps ask him that question, and you certainly have to face the same one. One of you will go first, the other one left sorting everything unless you do it together whilst you can, with help of course. The garden will not matter then, so please try to accept that the garden is done, but you will not be there for long anyway, then concentrate on getting the downsizing on the map instead. Good idea to gt help in as support for yourself, but socially and an extra pair of hands around the house, would OH like that?

theworriedwell

"But I feel like kicking him out right now. Except I can't because I need him to help with things"

Maybe he knows that's how you feel and feels like he is being used. I'm my husband's carer and I'd be devastated if I thought the only reason he was with me was so I can look after him.

I didn't feel like that until he did those things to the garden without talking to me first. I might not have been able to walk but I was quite capable of talking! On another thread I'd been talking about looking for a new chair or two. I included him in this all the way - showed him options I was thinking of (he wasn't interested and said whatever you decide). But at least I didn't just get something without discussing it with him first - because you wouldn't would you?

I've managed to hide my feelings well when Grandson is home thankfully. Which has not been easy. And just go into family mode.

welbeck

both the other residents should be sharing the tasks, maybe the 16 year old less so, as presumably studying. i think you need to just go on strike.
it sounds damning with faint praise to say you were grateful that your husband actually brought you food when you were confined to bed.
sounds more like a neighbour down the street.
what was the alternative.
be quizzed by a coroner. ?

Good point. I did wish he would stay and chat with me sometimes as well. I do know he gets a bit too independent if left on his own for a while. And he might put things away in the wrong cupboards (I can live with that) etc, but it was such a big major change and that should be a joint decision. It knocked my confidence. If that happens, what next?! Put me in a home unilaterally?!! Sorry it's just something you hope it never comes to that - going into a home.

I have tried to discuss the future. And also pointed out that if anything happened to him I wouldn't manage here and wouldn't be able to afford to pay the bills so it would have to be sold anyway then and it could be a big burden. He doesn't seem to get that either. It wouldn't be quite as bad for him if anything happened to me as he does still have an income as well as his pension. I think he just doesn't want to think about it. It took us years to get round to making wills.

Grandson is no trouble - sorts himself out, does his own washing. Occasionally cooks for himself. But I like to keep up doing an evening meal for us - but need the odd bit of help with that. He'll help with something if you ask. I'm not that good at asking sometimes.

On the other hand it's awful wherever you live if one of you goes.

gentleshores

I'm still quite gobsmacked - he's even added some makeshift fencing somewhere which I don't like either - it blocks the sun from the house windows. I did say to him - people get divorced over things like this - it's a betrayal of trust. He's said sorry a few times and he's prepared to discuss it now and let me have some input;. A bit late.

This is not a betrayal of trust it’s a difference of opinion. And no, (normally) people don’t get divorced over it.
While I don’t wish to sound unsympathetic to your physical issues you seem to be picking fault with everything your DH does.
The relationship sounds fraught at best. If your garden means so much to you get a gardener in to do things the way you want.