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

She says at 7:43 that they are hoping to change the mobility car for a bigger one.

A minibus with ramps which requires no physical strength at all, just pushes of buttons, to allow the passenger to drive in and out in his electric wheelchair (and travel in the chair, secured with special fittings) does seem the most appropriate long term solution.

Oh OP you are so NOT being unreasonable. I'm a carer ATM and it's 1000 times more difficult doing it for an adult than a child. You have to have strong boundaries - know where your own physical and emotional limits are.

People who don't live with it haven't got a clue. One of my dds is visiting from overseas atm - and within 24hrs has told me I'm doing it all wrong.

I watched a friend care for a husband with a degenerative muscular disease, she knackered her back. She did the saintly martyr thing expected of her and it broke her.

If you don't draw your line in the sand you will get broken - don't let that happen.

OP you're within your rights to say no, but honestly if you can't lift a double buggy out you need to start building some strength up

Marvel:
"Your attitude is disgusting"

No it's not. Most of you have no idea what loving but living with someone who has a health condition is like.
I have one (nowhere near as severe as OP) and I know it's tough on my Dh and kids.

My Dad permanently damaged his shoulder looking after my Mam, its painful and impacts on his life every day. Caring should not involve permanent physical harm. That's not a lack of empathy that self-care and basic common sense.

It won't harm you at all. You can get lightweight wheelchairs for those occasions. To be honest I feel very sorry for your husband having you as a carer with empathy like that.
Luckily enough your children will grow and they will be able to help in time as he will only get worse.

And all support and aid and financial support has been cut.
So if someone's struggling, they are just supposed to get on with it!

Support has been cut in every way. I have two friends. one with a possibly ASD child who has been told that there is no support available, no money, and diagnosis may take up to 2 years before they even get initial appointment.

and another one with cerebral palsy child who has fits at night and respite overnight care has been stopped 2 years ago.

OP if you can’t manage it you can’t manage it. That’s not your fault. This isn’t just looking after dc and the occasional having to lift a wheelchair this is full on 24/7 caring role. You’re allowed to find it hard or impossible some days
You’re allowed to complain
You’re allowed to vent your frustration somewhere.

Do you get direct payments that coukd pay for a PA to help on days where things like this are a problem ?
Hugs x

It's not a disgusting attitude, it's one borne of stress, exhaustion and despair. Just the twins alone would be enough, without a husband who is ill/disabled. The OP's husband might be lovely, cooperative and helpful but disabled people are just people and he might also at times be cross, angry or a bit stubborn about how he wants things to go. It does sound like the OP is simply clinging on by her fingernails- the advice to involve adult social services is very important as they are the access point to accessing OT, equipment, care and so forth and they also have an interest in keeping the family functioning as a whole. I have had them involved with my family and they were very good. Soldiering on, cobbling together care from family members who themselves will get exhausted/tensions strained, is not the whole solution here.

Have you looked into a more suitable wheelchair friendly vehicle?

I would have said YABU and sound unsympathetic to your husband until I spent 3 years looking after my lovely mum when she needed a wheelchair to go out. I loved her so much but it is much harder than anyone realises until they do it.
Taking her out for the day on a Saturday could involve me folding and unfolding and taking the wheelchair in and out of the car a dozen times. It was not terribly heavy just cumbersome and awkward. It wasn't electric and pushing her would blister and callous my hands. People are not helpful- they push i front, walk front, become impatient. Everything is harder.
She loved going out and I never showed my irritation to her because none of it was her fault but it was exhausting. She was very wheezy and moany at times- with every reason to be and I had to bite my lip because I could feel myself becoming snappy.
It is hard. People you love who are chronically ill can become an emotional and physical burden. It alters your relationship if you are not careful. I can not imagine how hard it must be - for the carer and the affected person- to do it full-time and permanently.
No answer but some support!

Luckily enough your children will grow and they will be able to help in time as he will only get worse hopefully not, the children need looking after for years and years! They are the dependants. Of course this is not going to work if you are looking to rely on small children to help! Even age 10 it would be mentally taxing for them.

If it is too much for the OP to do already, how is it going to be ok for children to become carers? Please, please involve adult social services and if you have them involved before, ring them and tell them the situation has changed and worsened and ask for a reassessment.

You sound tired OP.

Could you go to an Osteopath about your shoulder? It should help.
Have you had input from the OT and practical support to see what a trip out means. If not you need to do this.
Your mother helping may not be the best solution. Have you considered outside help? If their is a local college near you then you could ask for help via the childcare courses. Our college sometimes had requests. We did three days in college and two on placement. It would be free. Would contact a family be able to support you? Even if it is only a couple of days it would help. Your mum will still be able to help but it would give you a bit more breathing space if they are not getting on. A people carrier sounds a better idea and less effort.
Can someone neutral discuss this with you husband? He might listen to them more.
You have a lot on your plate at the moment. Could he go to a day care centre once a week? It would mean he could mix and discuss issues with others and perhaps find a solution or just have the company of others.
My MIL was in a wheel chair lately and it is hard work. You do have to plan. If people haven’t experienced lifting a chair in and out they cannot advise you. You need to look after your own health first because you have a lot of people relying on you.
YANBU

Latterly

It must be extremely difficult for all of you. I second the suggestion that you consider couples counciling. Three little kids is hard enough on it own let alone combined with disabilities etc.
It's a shame you can't get you husbands family to help. I can see it must be hard for you husband to have your Mum around during the week. I can just imagine the resentment all around.
Would your husband stay at his parents for a couple of nights a week or could you stay at your Mums? Perhaps if you had a break from each other it might help.
My Mum is lovely and my husband loves her but having her around all week would be too much.

People posting on here seem to think you should be saintly.
Yanbu to prioritise your physical health and the ability to be able to physically lift the younger ones.
Yanbu.

OP you sound exhausted and at the end of your tether. Please get in touch with adult social services for help. Also contact your local carers centre where you can get some emotional support carers.org/

I don't have any insight re the disability but why the need to create an unmanageable circus by going out and about 'as a family'? I only have one kid but we used to 'divide and conquer' much of the time so that at least one of us could recharge, tidy the house, do laundry or just stare at the wall while the other one wrangled with the mini dictator.

You have three tiny kids. That alone would break many people. Until they're a civilised age, do whatever you need to and enjoy 'family time' at home - dragging them all out together seems like self sabotage. You didn't expect twins but life happens, you'll be in the trenches for a bit but gradually they'll get easier.

Adults make their own provisions. Your dh needs to think about exactly how his needs will realistically be managed and do what's needed to make this happen in the least demanding way. The kids come first for now.

I think you're being unreasonable. This situation is unlikely to arise often and folding chairs don't weigh THAT much.

If you're getting shoulder trouble from lifting a double pram in and out of the car then I think you need to get referred to a physio for treatment and advice on how to build your strength and learn to lift without hurting yourself. I don't think your husband's ask is a big one and it would make the WORLD of difference to him in terms of mobility.

Case in point: Lifting a folding chair really shouldn't have the potential to damage you. At least not a high potential. You need to strengthen your shoulder for your OWN good if it's that fragile, you don't want to have a bum shoulder for life!

I am fit and healthy. I gym with specific intentions of building strength and cardio for my caring responsibilities. I have a 12 year old parttime manual wheelchair user.

I have significantly hurt my shoulders pushing DS down a slope. i have sustained a rib injury lifting a wheelchair in and out of the car (before we changed car). A day out can result in everyone taking a day of rest the next day.

Lifting wheelchairs in and out if cars is a specific risk activity. If you cant do it you shouldn't be doing it. There are ways round it.

Also if it hasnt already happened you need a referral to the occupational therapy team, both the regular and the adaptations team. They will finance or part finance house adaptations. You need to consider whether your house is actually suitable. Simple adaptations like flat entry shower, shower seat and handrails will make a world of difference even at this stage. But theres no point in doing them to the house you are in if you need to change house in 2-4 years time.

Also look at threasholds, especially on outside doors. You want flat ones.

I also agree with MorrisZap to a large extent, it's a lovely idea all wandering around together as a family but realistically you would need two adults or more to manage this and it may be that it's not sensible to be trying to do that all the time for days out- twins alone would make this difficult for most people. Local trips out to a park, yes but I wouldn't be looking to go out lots at the moment as you are not realistically able to help him at all whilst wrangling twins and another child. Ultimately you may have to start looking towards paid care or you may get some support from social services for days out (yes, funding is harder to get but don't let that stop you from asking, it is a hell of a lot cheaper to have you doing all the caring with the odd day off than for your marriage to break down and your husband to have to go into assisted living or a care home and they will be mindful of this).

I don't agree anyone should be able to lift a wheelchair- yes, very lightweight ones great, but the father here is a presumably decent size adult male and those wheelchairs are usually bigger and heavier on purpose to support their weight. I could just about do it and my back/neck was hurting, if I did it for years, then I think I could have sustained an injury, plus all the other caring responsibilities such as leaning over a bed a lot if he is bed bound on occasions. OT help and equipment needed plus they may have a lifting course for free, but getting to it will be hard with three children.

And like fuck you shouldnt be able to go out together....

Make the boring stuff easier so you can have fun together. Life is for living.

Some of The comments in this thread are sickening towards someone with extremely high demands on her that isnt managing already and the situation only likely to get harder.
People have obligations towards their children. Anyone else is down to goodwill and their own boundaries. She is not a slave.
This is a difficult situation clearly for the husband too but that doesnt mean his wife has to do it all with a smile for life

My dad lifted my mum's wheelchair in and out of the car for a year before she died.
Buggered up his knees and his back doing it.
If your husband and kids need your help for other things, you can't be doing this too