Feeling sorry for myself and like a shit wife and mother. Anyone else?

[OnTheRunWithMannyMontana]

I'm newly disabled. Well I say newly but it's coming up for 2 years now.

My (usually lovely) DH is really struggling with things. There are so many things that I just can't do. I can't stand without support so things like cleaning the kitchen, vacuuming, cleaning bathrooms, changing beds etc etc are beyond me. I have to crawl from the bed to the stairs then he helps me stand at the bottom of the stairs then I use a walker kn the ground floor.

I struggle to get into the fridge freezer because I don't have enough to hold on to which means he has to help me prep a lunch before he leaves for work and he has to cook every evening.

I can't get the washing out to the line or back in again. I can't stand to iron, I can't get up and down the stairs to put clean clothes away.

There's a fuckton more things that he has to do to help me but this thread would take an hour to read if I told you then all.

I suppose I am worried about the mental toll all of this care is taking on him, I want to know what you do to help if you are as restricted as me?

How do I show him how much I appreciate what he does for me? I say thankyou Everytime he helps me but I feel like there is more I should be doing. I have always been so independent so it's so hard to not even being able to stand without his support.

I'm 38 years old. This is not what he signed up for.

Are you entitled to any type of benefits ( e.g. attendance allowance/carers allowance) if so you could use this to get outside help to support you with your chores etc and free your husband up from certain things. Also have you been accessed for any equipment that may help your mobility?

This sounds like a huge adjustment for you both. But I disagree about it not being what he signed up for - in sickness and in health. I'd do it for my DH in a heartbeat.
However, I think it important for you both to get you some more independence if possible. Are there ways the house could be converted to make it more practical for you to get around and do tasks? Were you given any support after whatever has caused your disability?
Perhaps you could look at moving to somewhere you can have a bedroom on the ground floor, or everything on one level? Could you get an ironing board which lowers so you can do the ironing sitting down, or a low level table in the kitchen so you can sit and prep? A fridge freezer with an easier handle? Would a chair be easier than a walker downstairs, opening a fridge from sitting is easier than trying to do so whilst propped on a walker?

Only you will know the answer to these but it might be worth on a weekend sitting down with your DH and going through a list of tasks. Don't think about what you can't do - think about what you can and what you want to do. Do some problem solving so she can see that you can and want to gain back some independence and take the pressure from him.

As for cleaning etc - can you get a cleaner in?

That sounds absolutely awful for you, no wonder you are feeling down but you are NOT a shit wife and mother, it’s not like you chose to be how you are.

My situation is nothing like as bad as yours but since some very intensive cancer treatment a few years ago I have been left with some lingering issues that affect what I can do physically and am on medication that leaves me very tired. There are lots of things around the house I can’t do anymore and I do feel guilty when I am reading a book while DH is doing household stuff. I also know that he would prefer to have me around, albeit not as healthy as I was, than not and I am sure your husband feels the same.

I think you need to sit down and have a very honest conversation with him and basically keep talking. If you can afford some help around the house so your husband is focused on helping you rather than doing household stuff you might feel better. Sometimes shit happens and it can be hard to deal with x

@Keladrythesaviour that's really helpful thankyou. Yea I think a sit down talk with him this weekend would be good.

I have been assessed for equipment, had to buy my own wheelchair, shower seat and bath lift but was given my walking frame and a kitchen perching stool although it hurts so much to use it.

I offer to help with ironing if he will lower the board for me to do it from my wheelchair but he is insistent that he would rather do it than cause me additional pain.

Yes I get enhanced PIP so we have a motability car for the wheelchair and enhanced daily care so could use that to find a decent cleaner to be honest.

Can you get adult social services to do an assessment and refer you to the occupational therapist? They can get your house adjusted and give you other devices etc that can help you live more independently, which will take some of the caring tasks off your DH, which will improve how you feel. I know someone who even got a through-floor lift put in for her wheelchair. They might also be able to get you a home carer to pop in daily. These things don’t require a diagnosis if you’re still trying to get one as they are based on your needs.
It sounds like you don’t have a wheelchair (or perhaps your house isn’t set up to move around in one) but like you might benefit from one? That can be another huge mental adjustment but they can make life a lot easier. Social services can potentially signpost you towards help with this, too. There are also advocacy services that can help with benefits applications if you need them but these tend to be local-specific.
Its really hard when you feel like a burden to the people you love. It can really fuck up the power dynamic of the relationship and make it feel unequal. Just remember he loves you and is adjusting too. Keep talking and listening to each other. Getting outside help wherever you are entitled to it will make both your lives easier.
What can you do activity-wise that would make you feel better? Are you able to work at all? For example, I know someone in a wheelchair who runs a handmade clothing business from home. She started small but its steady now and makes her life meaningful. Do you have any hobbies you can still enjoy? Are there things you could do to adapt your hobbies to your needs? If you’re outdoorsy, some woods have wheelchair access and canal towpaths are a great shout for accessible walks as they’re usually fairly flat and wide enough, and often have decent parking.

Also, find your local Young Carers Association, they can take your kids out for free to all sorts of activities from evening meals to weekend trips, which gives you some time to breathe and the kids some time socialising with other kids in similar boats.

I don't want to derail your post, I'm in a very similar situation and had to buy my own mobility aids and wheelchair, still waiting on PIP and hit rock bottom last week, I called my gp and gathered as much help as I could.

I've been referred to Psychological Medicine who help with managing the mental health aspect of chronic illness, the mental health worker I spoke to last week couldn't believe I'd not been referred before. Call your GP and ask for access to them. I'm hoping it helps when the apt comes through.

I've also been advised to write a list if 3 jobs to do daily and if I don't get them all done it's not the end of the world, my husband has appreciated these little things being done even if I can't cook a meal or sort the washing out. I've been sat in the lounge folding clothes or prepping something for a meal. Little things that mean I can contribute.

Try not to be hard on yourself.

Sorry to hear this, it must be so hard

Struggling with similar OP. I'm fairly newly disabled, have an amazing OH and we have a blended family of 5 kids between us (none shared). My kids' dad died earlier this year which has obviously impacted my DC.
I work part time, have just taken on a stressful promotion and have also just got one DC into school after a year's absence due to SEN.
The pressure on our family is immense.
My OH is so supportive, takes on the majority of the housework etc and I do the running around for my DC, the mental load and of course we both work hard.
I feel anxious so often, I worry what the future holds with a progressive illness and I feel the pressure of not dying so that my kids aren't left orphaned (extreme sounding but true).

Sending you solidarity OP

Op, no practical advice, but knowing that you appreciate all he does will go a long way. Accepting his help with warmth and good grace, and making sure he knows that you are aware of the efforts he makes and that you value him is important. Your change in ability is the absolute definition of in sickness and in health, and I would do the same for my husband in this situation. He sounds like a wonderful man and you sound like you are doing your very best. Don't be too hard on yourself.

This story resonates with me as my friend is in a similar position. Her friends and lovely husband do all we can but she feels awful and we realised quickly that our help is not the kind of help she needs, We all jumped in and did things like taking the washing and doing it and returning it,dropping off meals and doing a bit of cleaning and shopping,We had the reverse effect on her than we were aiming for, We made her feel small and useless and that was the last thing we ever intended to do, We accidently erroded her independance unintentionally and it caused her much distress, It came to a head one day when she broke down and we helped her devise a different plan, When her benefits were in she took control and chose her own cleaner,she sent out her laundry to be done and ordered her own menus for the family from wiltshire farm foods to be delivered to the door step,she wanted friends not carers and thankfully for her she regained back her own control and she felt much better,We were all so distressed we had caused her so much distress, She wanted us to be friends not carers and in her mind we couldnt be nor did she want us to be both, I suppose what I am getting at OP is if you can make your own plan of what YOU want and need,what would make life smoother for you and your family then do it. Be honest with your husband and decided what works for you,It might be outsourcing things may be expensive and adjustments may need to be made elsewhere but if you feel better and in control and you feel like you have removed some issues that were concerning you then go ahead and just do it, I hope you feel more at ease soon,Its a tough thing to navigate x

Thanks so much for all your replies. I've been in tears this morning reading them.

@PeekabooAtTheZoo I was referred to OT back at the start, they organised a couple of pieces of equipment but that was about it. It wasn't really known at the time if this was permanent or not but it's feeling pretty permanent to me!

I work full time from home in a very high pressure job which isn't helping. I am the main earner though so I am contributing something even if it's only financially!

I definitely need to get outdoors more. I struggle manoeuvring the wheelchair alone so I only leave the house for hospital appointments... I need to see the outside world more! DH works full time too and he has so much to do when he isn't working that he doesn't have time to take me out anywhere. I have a scooter in the garage but I'm a bit scared of it!

I'm sorry you are feeling the same @SherlocksSocks it's utterly shit isn't it. I like the idea of the three jobs list. I'm going to try sort the tin cupboard out after work today. Bit of stock rotation and check what's in there then I will meal plan and do an online shop for Saturday to save DH time so he doesn't have to go to the supermarket.

Thank you @LuckyCat4 I'm sorry you are in the same situation. Nothing really prepares you for it does it? I know exactly how you feel with the DC, my eldest DD (now 18) didn't attend school from year 9 to year 11 due to extreme anxiety and SEN. It was one of the most stressful periods of our lives. Be kind to yourself x

Thankyou @katmarie for your kind words. Yes he really is incredible. I really try my best to show him how appreciated he is but he just seems so stressed all the time. Even his mother (grrr) turned round to me the other day when I was telling her he seemed stressed and she gestured at me and said "well he's probably fed up now of all.... this!!" Jeez thanks MIL. Way to make me feel like shit!

@creamwitheverything you sound like a lovely friend. Mine have all gone off radar, it's not fun being mates with a cripple who can't go to spoons because the toilets are up eleventy billion flights of stairs!!

If your and DH’s position were reversed (and he had always done everything you always did around the house) and he had posted on MN as you have done - what would your response have been? If it would have been along the lines of “naturally I look after you dear; I’m your wife and I love you”, then think whether he thinks the same.

This is not what he signed up for

It is quite literally what he signed up for. It's in the marriage vows