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

While caring for someone with a disability shouldn’t be under-estimated, the fact is that you had three children under five knowing that this was a degenerative condition.

IMO this is where the yanbu votes come from and the pure hatred which seems to emanate from your posts.

You knowingly had children, so you can’t use them as an excuse for not wanting to help him now that his condition has deteriorated, something which you always knew was going to happen.

I voted YANBU. Looks like you will be the one healthy adult in the family and will have to do all the heavy lifting (pardon the pun) with all your dc, so you need to look after yourself as much as possible.

What would happen if you hurt your back and couldn't lift anything so were out of action??

Is your h thinking about getting rid of his electric wheelchair and getting a manula ne instead? Wil lhe be able to ush that or will you have to? How wil lthat work?

It sounds like you might benefit from couples counselling. Does he have a specialist? Could you talk to them about how your h's disease may progress and other things that can be put in place to help him - and you? Carers are under a huge amount of pressure to do everything for the person they care for, to save the NHS money, and risk exhaustion and illness themselves, both mental and physical. Sounds like a very difficult siutuation for you both.

I would lift the chair. I’d help him. I would also help a stranger so I’ll look out for you. I’ve got a bad back too. It’s because I’m a bit of a workhorse and getting old. But I’d do anything for anyone.

And- you sound at the end of your tether already, because you are starting to say the type of things people say when they are at the end of their tether. Get more support. You do not have to do this alone, or with some care cobbled together from your families (which is not a long-term solution).

YANBU

It’s essential you look after your health. As another solution is available, why not use it. Makes perfect sense to me.

Also to be blunt, DH willingly had three children. He must have known that this would significantly reduce your time and energy and that at some point he may occasionally have to sort himself out. Now with your injury too, this is one of those occasions. That’s what he signed up for I’m afraid.

Sometimes on here we aren’t allowed to point out that people’s decisions have consequences. Well sadly they do. Not sure he has much grounds for not just going with a perfectly workable alternative arrangement.

I tell him he will lose us all if he doesn't change his attitude and stop making stupid mistakes. I do say to him at times maybe he should go and live in a care home where he can get the care he supposedly wants.

What kind of 'stupid mistakes'? OP, your last post sounds very resentful. Did you and your h talk about his condition and what was likely to happen to him? Do you still love him?

his constant huffing and puffing each time he gets up off a chair is really hard to listen too for everyone around him

Yes. Must be so hard listening to someone struggling with a disability.🙄

Lightweight wheelchairs are not a major problem to lift. I’m tiny, not at all fit and have multiple issues with my back and neck after lifting DD for so long. The one thing I can do without a problem is lift her chair in and out of the car. The wheels come off which really reduces the weight too.

I’m surprised about the switch from a power chair to a manual with a degenerative condition and if you have a pram too. What happens when you are out and about and there is challenging terrain?

It does sound like you resent him. That’s not healthy.

Nobody truly knows or understands how a situation is unless you're there.

I’m there. At no point would I decide I’m just not going to help.

It sounds really difficult.
Its easy for posters to criticese you from a distance when they're not the ones living it

I second the suggestion that you maybe need to stop looking at “conventional” cars and start being more realistic about your situation - how much longer would he be able to use a new “lightweight” chair? And how robust would it be? Would you actually be better off keeping the bigger electric chair and getting a proper van with ramp etc?

I get that you’re absolutely knackered and resentful but you need to be communicating with each other and planning ahead. It’s not going to do anyone any favours if you keep going along with it, getting resentful, then turning around and snapping and refusing to do things out of the blue.

You are absolutely not being unreasonable.

Absolutely Do not get rid of the electric chair. Your dodgy shoulder will become diabolically awful if you have to push him around full time. He needs his independence. You may find in time you need a lightweight one as well.

Adapted transport is awesome otherwise you take your car with the hoist. You dont take other peoples cars. Chose cars without a lip on the boot so you can lift and slide you dont have to lift over (i speak form experience of ending up in emergency hospital with a suspected heart attack that turned out to be a bruised rib). Always strip a wheelchair down to its composite parts to reduce weight.

If you dont save yourself first you can't help anyone else. Anyone who says otherwise hasnt survived being a carer for a prolonged period of time.

Carer for 10 years

Sorry what stupid mistakes . Sounds like he is doing what he can within his limits. Can you get any paid help or a volunteer to assisy on days out.
I do get the frustrations as I have 2 kids with complex needs who both rely on wheelchairs fulltime . We bought an old minibus that takes 2 wheelchairs and still has 5 seats for everyone else. We also lease a smaller wheelchair vehicle through motability in case we need to go in different directions so I agree with getting a minibus and accepting that your life will be limited by your husbands condition and more so go forward.

AllHeart, eponysterical...

OP, keep your head screwed on. It's a tough road and people can't wait to stick the boot in to carers. It's a curious role in life to have. A despised saint - monstrous and holy, and never human.

You are human and that's ok. Good luck. x

The comments about you knowing this was coming all seem to ignore the issue of your shoulder problem OP, which you presumably didn't get prior warning of.

Anyway, you have a physical problem yourself which means his preferred solution isn't going to work. So another will have to be found. Either now, or once you've followed his proposed solution for long enough to worsen your shoulder. It would be sensible to decide and agree on that alternative now.

Get a car he can roll into. Any transport he can roll into is good. When you are tired and he is tired its not the time you want to be doing transfers. Your chance of serious injury is worse when you are tired. When the carer in the household is ill or injured everyone suffers.

Get someone in to do the housework once a week and the ironing. Also the lawnmowing

Expecting it and living it are two very different things

Based on your update. You need more support and this does not mean bringing in more family members.

Please make an referral to adult social care. You can do this online. I would also advise seeing your GP and telling them the situation, they can also make an referral. You have done amazing caring for your husband but in the long term it's not sustainable.

Another thought. Does he drive ? If so what about a drive from your wheelchair vehicle that he could wheel in and drive himself ?

What’s the prognosis for his condition?

I think it is normal to feel the doubts and resentment you have at the moment. I'm guessing that your DH's condition must have progressed far more quickly than either of you anticipated.

Have you asked your GP about any counselling for you? And counselling as a couple? You need support here too and also you both need to be understanding each other in order to reach the right decisions and compromises.

Are you having any treatment (physio etc.) for your shoulder problem?

Surely he needs to keep the electric wheelchair too as that will give him more independence for now. The new one is just one to keep in the car for when out and about.

If he is expecting you to be able to push the double buggy and his new wheelchair when out and about then I think he is being unreasonable and unrealistic. He needs to know that and be made to lower his expectations. While you are still managing very young children, especially twins, he may well have to get specialist taxis or you will be able to go nowhere as a family.

To the poster asking why ten month olds need a buggy, that just cannot be a serious question, so ignore. Of course they do.

Do you have the lightest possible buggy that would work for your twins now? There are some very good looking double strollers that can lie flat. It doesn't have to be the larger one that you would have needed when they were newborns.

Good luck. I hope you find a workable solution. It sounds very hard for all.

In all honesty I think you should have thought about this before getting involved in this relationship. It sounds like he's pretty self sufficient, asking for help lifting a wheelchair on occasion which tbh can be entirely avoided by sticking to your own vehicle is hardly a massive ask.

I think if the boot was on the other foot and a disabled woman was posting this she'd be getting calls of leave the bastard.

flapjackfairy she says in the opening post that he doesn't drive. Tbh being relied upon to be the only driver in a family of five is often enough of an extra responsibility without caring responsibilities.

İ know it's pricey but are you able to oart exchange your current car for a drive in car for the wheel chair? Have you looked to see if you are eligible for a motability car. My brother in law had one. You have to pay every month but if he gets any disability benefit they used to take it out of there. Not sure if that's how it still works though. No harm in trying to find out. www.motability.co.uk/c/ppc/use-pip-or-dla-to-lease-a-car/?gclid=Cj0KCQiAvJXxBRCeARIsAMSkApoahzhxmKw_xGOUyJa0N5pLPzUYDTNX9Pl7uC8w10DePnSiRChJ9F4aAo9WEALw_wcB

My husband was his driver. So he doesn't need to be able to drive

You sound a bit like you have compassion fatigue which is real and understandable and treatable. Can you access any talking therapy for yourself?

If your DH is struggling can you access holistic care for him like a pain clinic?

I may be stupid but why hasn’t he/you got an adapted car/van that his wheelchair can just drive into? I’m guessing he receives the mobility part of PIP and is entitled to a car? An adapted van could fit him inside whilst in his wheelchair and fit the dc’s in without unloading dh from his chair.

He walks so slowly with a stick it as actually painful for me to walk that slow and he knows that.

Op, be honest, do you want to stay married? If not, say something. Your resentment towards your H is palpable and it needs sorting, for everyone’s sakes.