Rant - coping with disability and partner

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.

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.

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.

"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.

could you talk to your GP ?

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.

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

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

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. 💐

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😁😊🤣

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.

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.

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).

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.

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.

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'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.

so are you reconsidering the relationship, OP ?

Judy54

It can be very difficult being a Carer. I have cared for my Husband for 10 years and would do anything for him, He is very grateful for the help that I am able to give. For me it is a four letter word called love. It is a shame that your OH cannot see how your needs have changed and adapt accordingly. If it was the other way round I am sure he would accept any support that you could give Him.

Likewise I cared for my DH too. Would have done anything for him. Just wish he was still here for me to love and care for. The love he gave me in return was everything.

Whiff I applaud your determination but I do wonder if only female members of your family did the caring? Maybe not, but it is so often the case and it would be great if there was an equal expectation of men stepping up for caring duties within families.
Also in the case of the OP, the OH seems uncaring and that is what hurts.

I feel your pain. I have fibromyalgia, mild arthritis and high blood pressure. I really want to declutter to make the house easier to keep clean and more relaxing to live in but my husband refuses to get rid of anything of his - he just buys more stuff. If he wasn't with me he would be one of those hoarders who live in houses full up with loads of stuff. I used to keep the garden tidy and manageable but can't anymore. He has planted loads of flowers, bushes and shrubs but doesn't keep them under control and the garden is a mess. I tell myself it's a " wildlife garden" to ease the pain I feel when I look out of the window. There are also piles of rubbish under our car port which make me feel ashamed even though it's not my rubbish. When I suggest hiring a small skip or a man with a van ( and a licence!) To help us dispose of it he insists he will sort it out and take it to the tip, but never does.

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.

Wiff, I read your post and I have to say you’re a very brave lady. Keep going girl. 💐

We're still talking. But I have to see the garden every time I look out of the window and it hurts my heart. That he changed things so drastically. I'm not sure I can get past this one.

Whiff

I was born disabled I look normal or should say able bodied as no such thing as normal. If I am sitting down it's when I move then you see I am disabled. But I have never moaned about looking after others . I was brought up in an large extended family,knew all my great aunts and uncles etc. So I wasn't made to feel different.

When my children where 4 and 6 months the limb jerks started in 1988 and the pain got worse. I have had pain in my legs and fallen my whole life. I was a hands on mom only thing I couldn't do was go out by myself. And as a family went in a wheelchair until the children where older. My walking was and still is bad . But it doesn't stop me .

It was my fit healthy husband who got cancer and died aged 47 I was 45. Our children 20 and 16. They left home 2 years later son to uni and made my daughter go back to the city where she got her degree as she had been doing temp jobs and not using her education. They needed to live there our lives. They both lived 100 miles from me .

I couldn't move as I had both parents and mother in law who needed me . Nursed my dad with mom until he died in 2007 aged 80. Mother in law died in 2015 aged 91. My mom lived the last 18 months of her life with me she had cancer and dementia. My mom died 4 months before her body and was violent but it wasn't my mom . And the violence is out of fear she didn't know who she was ,where or who I was she thought I was her mom. Mom died in 2017 aged 90.

I looked after everyone myself . Until mom died I didn't realise how much my own health had suffered . Then I got jaundice and was seriously ill for 5 months . First time in my life I needed someone with me 24/7 there was no one. I had never been frightened of living on my own until then. When my gastrologist discharged me he told me people with my bilirubin levels normally died. Told him I was glad he hadn't told me that before.

But for all it cost me I would do it all again . I never moaned about looking after others as it's what I was brought up to do. In our extended family if someone needed help you did it . My dad always said no such thing as can't .
Please don't moan about looking after your husband because you are disabled be lucky you still have him.

I finally moved to live near my children 5 years ago . Have better healthcare here. In 2020 found out I was born with a small hole in the side of my heart . In 2022 finally know what my disability is and only because my new neurologist had my whole genome genetically tested and it's rare. Luckily he had put me on a tablet which within 2 weeks stopped my limb jerks and the seizures I had been getting which started in 2019.

I had fought since 1988 when my turn GP told me point blank you are disabled and entitled to disability benefits. Took me until 2023 to get them in the form of PIP and only because the Brain Charity got me a solicitor pro bono and went to PIP tribunal which I was awarded enhanced PIP for living and enhanced PIP for living indefinitely. And back dated until March 2022 when I asked for the forms.

My disability is rare my neurologist has never had a patient with it nor his colleagues. It doesn't just effect me physically and the pain has effected my arms since 2017 permanently . It effects all my aspects of my whole life.

Thankfully having my diagnosis means thanks to the rare disease society found a Facebook group with it and have learnt so much . I have seen what babies and young children go through with it which made me cry to think my parents when through that and they must have been frightened. My brother was born 16 months after me and he hasn't got it. Because I have the disability the mutation I have means I am not a carrier for it . So my children and 5 grandson's haven't got it.

Please do not use your disability as an excuse. Disabled doesn't mean incapable. I live by myself and live my life to the full. I know what my limitations are and do push myself to much at times. But my husband wanted me to live the best life I can and since I moved here I can . I found me again I didn't realise I had lost me . My grief for my husband has gotten worse over the years but cope but it can still overwhelm me at times.

I am very independent and hate asking for help. My disability is getting worse with age but I won't let it win . But it's such a relief to have both diagnosis. I am no longer weird but have hereditary Hyperekplexia gene mutation SLC6A5 type 3 and Paroxysmal atrial fibrillation. On medication for both . I am now 66 and got my state pension this year and for the first time since my husband died no longer have to worry about money. And this year I can have the heating as long as I need and not just 3 hours a day like in the past.

I am really sorry you lost your husband. And you've achieved so much as well. I bet your H didn't vandalise the garden though! I can only call it that as he set to changing things without discussing and removed something I loved.