Disabled husband, 3 kids

[LdnRed99]

Disabled husband and 3 kids...

My husband was born with a condition which is degenerative and recently he has started using a wheelchair. He is looking to buy a new one that can be folded down to take about with us. Whilst we are the getting a hoist for our car there may be times we don't have a hoist available and he is expecting me on those occasions to lift the chair in and out of the car. I already have shoulder problems from lifting our double pram in and out of our boot (we have a 5 year old girl and identical twin boys at 10 months).

Am I being unfair telling him I won't be doing that ever and he can use an adapted taxi instead should that situation arise?

Please vote and comment...I'd love to know why you answered the way you did

I hope you never need anyone to help you!

I'm sure OP hopes that too, because there won't be anyone to help.

Take care of yourself OP. It's a marathon, not a sprint.

No one is saying OP should do things where she may injure herself. No one is saying OP should not have appropriate assistance. No one is saying respite would be a bad thing.

People are questioning the OP’s vitriol towards her DH and the fact she seemingly despises and resents him despite always knowing this was the path he would be on.

I've been trying so hard to be sympathetic towards the op but statements where she is complaining about him huffing and puffing when he stands, walking too slowly, berating him for making mistakes, insisting on her mum staying 5 days a week even though her DH doesn't get on with DM but refusing to let his mum and dad help even though DH wants that all ring some alarm bells for me.

I think your DH needs to speak with adult social services. Is he allowed to see his parents op? And why are you threatening him with a care home? Is that his punishment?

Have people read the OP's 09:13 post?

There's no "hate" expressed by the op anywhere, just exhaustion and exasperation and frustration and weariness.

Why is it so fashionable at the moment to accuse people of "hate" and make everything related to emotions hyperbolically extreme? Pragmatism or worry or ambivalence are all instantly recategorised as "hate" all over MN (and other parts of the internet are worse).

Eliminating all nuance changes meaning and much reduces comprehension.

There's no "hate" expressed by the op anywhere, just exhaustion and exasperation and frustration and weariness.

Listening to him huff and puff when he stands up

He walks too slowly

He makes small mistakes and so is told he'll have to go in a care home

Has to accept ops mum staying 5 days a week even though he doesn't like her but is prohibited from having his parents to help (which is what he'd prefer) because op doesn't like them.

I think that's all potentially abusive, not hyperbole

Then surely it's better planning required. Don't fill up your boot with needless crap, don't go anywhere with you Mum.

I think you sound quite harsh as you knew your husband was ill when you married him, you must have been an idea that you would end up helping him like this. I can't imagine your husband feels great about this situation either.

Hearhoovesthnkzebras, that all sounds like exhaustion and exasperation to me. Even people who end ull ok as caters are allowed to think “oh for fuck sake!”, when they feel as if they can’t take any more. If it was that easy to look after someone we wouldn’t have the need for homes for the elderly of those with disabilities. Being a care is harder than ANY other ‘job’ you’ll ever have to do in your life. It’s 24 hours a day and even when you go to bed exhausted, you’ve no idea if you’re going to get six hours sleep or none. You can’t take yourself off for a week break to get your head showered, when it gets too much.

I can't believe the way so many people are putting the boot into the OP, when she's plainly nearing the end of her tether. Imo a pair of 10-month old twins is quite enough to get the average person close to the edge at times, and when you add in a 5-year old and an adult with disabilities it is a HUGE burden.

Some PPs clearly have no empathy or imagination if they can't see the strain involved in looking after 4 people who need a lot of care and support, while holding down a job and running a household.

YANBU, OP and I really get how exhausting and frustrating your life is. I have arthritis and know how DP gets frustrated when he has to do stuff I can't, and that's a minor thing compared to your DH's problems.

As the only one in the family who can look after the others, you really need to take care of yourself, mentally and physically. The whole setup will collapse if you become unable to give all the support you currently do. Knackering your shoulder will make it impossible for you to look after the little ones, and your DH.

My DP has a niece who uses an electric w/chair and she has an adapted van with a ramp through Motability. Her very canny mother raised £30k through grants and crowdfunding to get her a chair that can go up kerbs and stuff though, so it may be that only very high tech chairs can do this.

Is there any way you can get some respite now and again? Would adult social care or Care for the Carers be able to help with this?

Even people who have support as caters are allowed to think “oh for fuck sake!”,

Some PPs clearly have no empathy or imagination if they can't see the strain involved in looking after 4 people who need a lot of care and support, while holding down a job and running a household.

I can totally see the strain and think it fair enough for OP to ask him to use a taxi when necessary. That doesn't make okay to be nasty and abusive to him though.

Yes of course carers are allowed to think "for fucks sake!"

But to say it out loud would be rotten. It's not his fault.

It won't be too long before he has to sleep downstairs. OP, you may have to think seriously about future proofing your life.

It may be that you have to give some thought towards moving to a bungalow or similar. You certainly have to change that car, and you have to do it this year.

Better for @LdnRed99 to vent her frustrations here than at her DH who probably already feels as bad as she does. I do appreciate we only have one side of the story but being a carer can be so utterly draining even when you do know it's coming. We don't know that the condition has progressed more quickly than expected, I do know from personal experience that no one conceiving naturally, or very few people, plan for a multiple birth. Money gets tighter quicker than anticipated, the demands of multiples alone places pressure on couples - there's a reason why divorce statistics are higher among parents of multiples.

OP is allowed to feel resentful and sorry for herself. I might question her reasoning for not wanting her dh to have an operation which has a 70-80% chance of improving his quality of life. I think you are getting bogged down in negatives @LdnRed99.

If there are others with the condition, talk to them and find out how they manage in a family scenario. DH might need to consider altering his working pattern, make sure you are claiming everything you are entitled to. Look into direct payments so you can get someone in to help with the stuff at home.

Don't be afraid to admit to your DH that actually, while you knew about the condition, you weren't prepared for the reality of it. Especially with such a young family.

that all sounds like exhaustion and exasperation to me.

And refusing to allow his parents to be involved in his care, despite him preferring that over ops mother? Or op saying that she doesn't want him to have the transplant that he needs.

It might well be exhaustion but that doesn't mean her treatment isn't potentially abusive. He is in a very vulnerable position.

it is still at least as heavy as the boys double pushchair

Assuming that there will usually be a hoist and only occasionally it will be required, if it is the likely to be the same weight as the double buggy, is it not possible to lift it in? Support for carers is woefully inadequate, and I really hope that as a family you can find what works for all of you, but as the situation hadn't arose yet, is it managable?

Hearhoovesthinkzebras she doesn't want him to have the transplant because he might die - that's transparently obvious in the post. It isn't the OP's decision and there's no indication she's trying to prevent him choosing to have the transplant, she personally doesn't want him to have an operation with a high mortality rate! That's not abusive.

It would be abusive to prevent him having the operation if he wants it and a transplant is actually available. To personally not want him to have it is a personal human response.

It could equally or perhaps more convincingly be argued that pushing him to have the operation - which might reduce his care needs and make the OP's life easier, but has a 30% chance of killing him - is abusive!

I do think you are highly unreasonable for not allowing his parents to help. I know you don’t like them, but they are his parents and he wants them there. You should allow this for HIS sake, and yours as it will take the burden off. Whatever they’ve done to you, your husband does not deserve to be forced to keep his family away.

It sounds like his life is very limited and will continue to be. Try to make it as enjoyable as possible for him by allowing his parents to help. To not do so is not only incredibly selfish, it’s also abusive. It’s actually illegal under the new domestic abuse laws to cut someone off from their family members. It’s a really awful thing to do. Your relationship with them has no bearing on his relationship with them. He NEEDS them. Let him see his parents. I actually can’t believe you would be so horrible to not let them help out.

I can’t stand my in-laws. I would never keep them from my husband.

Why is the OP the only one who had the duty to do any long term planning? Kids are hard and sometimes they damage the body of the woman carrying them. It happens. Yet DH's agency and role in proceedings are being sidelined.

And refusing to allow his parents to be involved in his care, despite him preferring that over ops mother?

He may well prefer his parents but if they’re not going to be if any practical help or are just going to make things more difficult for the OP, then she can say no. She needs support too, as she’s the one doing the bulk of the caring.

Or op saying that she doesn't want him to have the transplant that he needs. That’s because the poor woman is probably trapped in negative thinking and has convinced herself that he is going to be one if the 20 odd percent. That’s nothing to do with cruelty or abuse.

I think you sound a bit harsh OP. My mum has a powered chair now but didn't when we were little and i could lift her foldable chair out of the boot of the car when I was about /89 years old and I wasn't a particularity strong child. They really don't weigh much,

Better for @LdnRed99 to vent her frustrations here than at her DH who probably already feels as bad as she does.

She is venting her frustrations on her DH though isn't she? For example she tells him that they will all leave if he doesn't stop making "stupid" mistakes. I don't know what the problem with his parents is but it also sounds a bit controlling to insist that her mother is allowed to go there despite him not getting on with her but not vice versa. She wouldn't get away with that if he was able-bodied.

It's with the children that the OP's mum helps out, not with her husband's care. That's clear in the 07:43 post because at weekends her DH does the things her mum does in the week but this is very tiring for him and leaves him wiped out on Mondays.

If it were assistance for the DH of course he should have 100% agency over who does personal care for him, but it's help with the children.

Having other adults in the house is hard for many people, and receiving help as a favour from family is often harder than paid help because of emotions and history and personal agendas.

He may well prefer his parents but if they’re not going to be if any practical help or are just going to make things more difficult for the OP, then she can say no. She needs support too, as she’s the one doing the bulk of the caring.

But he is dependent on other people so if his parents aren't allowed to visit then how does he get to see them? Plus, he has to accept her mum living in his house for 5 days a week when he doesn't get on with her - what must the atmosphere in the house be like? He can't get away from the mil if he wants some space can he?

You have to consider who is vulnerable in this situation and so who is potentially a victim of abuse and that is the husband.

**He makes small mistakes and so is told he'll have to go in a care home

Has to accept ops mum staying 5 days a week even though he doesn't like her but is prohibited from having his parents to help (which is what he'd prefer) because op doesn't like them.**

^Imagine the replies would be so different if the victim was a woman. This is abusive to me.

@woodchuck99 - true. And I am still very concerned that OP does not want her husband to have an operation which has a 70-80% chance of improving his quality of life. As PP has said, it's almost abusive on her part. Definitely selfish.

minisoksmakehardwork it would be abusive to stop him, to "forbid" or in some way stop him. It's not abusive not to want him to! That's nonsensical, especially given its absolutely clear that the reason she doesn't want him to is the 20-30% chance he will die during the operation!

Is it abusive to actively forbid or stop your 18 year old leaving home - in most circumstances, yes. Is it abusive not to want them to? Of course not!