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 think it's fine for you to say that he needs to use an adaptive taxi if the hoist isn't available as you don't want to risk your own health. I am disabled and would probably want to do that anyway as it would make me feel more independent sort myself out. Your other posts however make me feel that you are very unsympathetic towards him. It sounds as if he is doing his best so please try to be more empathic.

YANBU, assuming you are an average-sized female and not a super athletic weight-lifter, etc. I have a colleague who uses a "light-weight" electric chair and a car hoist. Much-loved as they are, their chair is too heavy to just casually pick up and tote around. Everyone pitches in to help get them and their chair in/out of their car - whenever we see them arrive/leave. It is not an easy task for me on my own and I'd struggle if the hoist was broken. It is nothing like folding and lifting a double stroller - which I have done many times.

It isn't selfish to look after yourself. This isn’t the same as putting yourself first. Its the reason why you put your own oxygen mask on first in a plane.

Injure yourself and you’re no use to anyone.

Trouble is that looking after yourself may come across, to others, as being selfish and may appear hurtful to those close to you.

I’m no expert on chairs, buggys etc but we did look into a detachable one for my MIL’s companion. (My MIL couldn't cope with a push along wheel chair or get an electric one piece one out of a car.) One that split up into, hopefully, convenient parts. This could be a backup chair for days when you’ve not got the hoist, main chair is being serviced etc.

All the best.

Yabu.
You knew he was ill before marriage and kids.
Generally wheelchairs are lightweight or at least easier than a double pram. 9r the weight of lifting kids.

If that was me I'd of thought about having kids and the practicalities around your husband getting worse.

I'm a nurse and have had years of manual handling training, you should not lift the wheelchair at all, utterly ridiculous for the PP's to tell you to do so.

Wow. As a disabled wheelchair user, I’m seriously glad I’m not married to you. You don’t have “compassion fatigue”, you just don’t have any compassion, full stop.

Why in god’s name, knowing your husband had a progressive and degenerative condition, did you choose to have children with him? You knew he wouldn’t be able to physically help with the children and you knew that he was or would be a wheelchair user, so what made you think that you would just be able to absolve any responsibility for that?

Believe me, I fully understand how shit being a carer is, but if my husband felt the way you do I would far rather he walked away, than carried on with such seething resentment and hatred in his heart.

Not sure how but the vote option seems to have disappeared for me and can't work out how to restore it. My DH doesn't drive because of his health now completely ruling it out. When he first learnt to drive he would get tired so quickly it just wasn't safe for.him or other people.

I will go and see someone about my shoulder. like you all say its important I look after myself. We always wanted a bigger family although my DH did say before I fell.pregnant with the twins how much more worried he was about being able to cope so when we found out it was twins it took a while to set in for both of us. The one positive think my DH can remember is that at the boys get older they will play together reducing the needbfor him to run around as much.
We have approached social services but it's means tested and as we both work we will fall.just over the criteria on most to have to pay for that ourselves when money is already tight. I have also signed up with the local carers team and I have recieved some vouchers in the past to put towards a bit of pampering for me which is nice.

I do resent my DHs health and see soany other families sharing out the work load that comes with parenting equally, or at least it appears so. I knew it was coming, just like the transplant he needs. I don't want him to have it as I would rather him be here with limitations rather than risk losing him completely (drs say it's 20 to.30 percent chance he would die given the complex conditions he has.

It is just a double edged sword situation we find ourselves in. Just wish there were more people.who understood his condition that we could both get some aupport. We know everyone in the UK and many abroad who have his condition, but the fact we know so many people is not because it's common!

Anyway...thank you for your comments and time given

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.

^Do you even like your husband? You sound like you hate him. Did you just marry him to have children? Why did you have 3 kids with him in the full knowledge he would end up like this?

I feel sorry for your husband and children.

Disabled people are too awkward to be taken out as a family? I don't think anyone would say a family of five should normally not be able to go out together, or on holiday or day trips etc I have a disability and a large family (albeit older now) and we managed it.

OP it sounds as though there are a lot more issues to unpick than the wheelchair (I have to say if my DH said I should think about going into a home, it would probably destroy me and I would never forget he had said it) but I recognise you are under pressure.

In purely practical terms, I agree with physio to strengthen your shoulders anyway for yourself, but for the wheelchair I would try and get an estate car/people type carrier if possible (dependent on budget and I don't think some people realise how much WAVs cost; they don't just cost the £245 month of PIP, the advance payment is usually £1000s.) If the boot doesn't have a "lip" but a flat floor to slide the chair in rather than lift it's much easier. If you get a folding ramp, take the brakes off and push the chair in it's a lot easier than a double buggy (I've done both).

A rigid wheelchair is counterintuitively much easier to get in/out the car than a folding one ime. The wheels and cushions come off and main frame folds down so each individual part is much easier/lighter to handle than a bulky folded chair all at once.

@LdnRed99 The vote is currently split at a very even 49:51 with 373 votes in total. x

Yabu.
You knew he was ill before marriage and kids.
Generally wheelchairs are lightweight or at least easier than a double pram. 9r the weight of lifting kids.

Did she also know she was going to hurt her shoulder?
Funny how women are supposed to consider every possible eventuality before marrying:
Money
Size of house
Whether he was father material
Whether he was lazy
Whether his hobbies are annoying
Whether his disability and your injury would make lifting difficult
Marriages can last up to 60 years or more, during which circumstances, and people change.
At what point does the 'you should have considered that before you married him' arguement become moot?

I have empathy for people with a disabled partner or people with young children (which is me!), so having both is definitely a challenge. But my mum is in a wheelchair and takes a folding one travelling. It is much lighter and easier to get in and out of cars than the buggies /prams we have. On that basis you are being unreasonable re this specific issue. It may be you need to investigate a different one for the car.
But, pushing someone is quite hard. My capacity for pushing my mum around is limited to reasonably smooth surfaces so that would be an Im not able to do that for you.
With a 10mo would your dh be able to have a baby carrier so he could sit in wheelchair with baby attached to him so you can handle bags etc?

OP re social services the needs assessment and financial assessment must be carried out separately. You might want to approach citizens advice or carers centre to check they are applying the financial assessment properly

The thing that strikes me is that you've done all the heavy lifting after a twin pregnancy - which is physically harder anyway - not surprising you're struggling physically!

Ligaments are looser after pregnancy anyway - so hardly surprising that something has got injured.

It feels like there is a degree of "please don't make stuff harder for me without thinking things through" in your frustration.

You are important too - you have to keep everything running so look after yourself, consider counselling (does the charity related to DH's disease have carer support?) so you can keep things together.

If that was me I'd of thought about having kids and the practicalities around your husband getting worse.

Try reading the thread before making such a foolish comment.

I’m so sorry you’re having such a hard time on here, OP. I spent 25yrs nursing very physically dependent patients and was often told I had great empathy. I could build a good relationship with most of my long term patients and their families. I had some of the very best moving and handling training you could ever hope for.

Nothing prepared me for looking after my own husband. I had all the training, but nursing your husband is completely different and you don’t get a break at the end of the day. I also have a child with SN/SEN, so had that extra commitment. I loved my dear husband to pieces and he did his very best to maintain his independence, up until the end. I lost him five years ago and physically I still haven’t recovered, even though he was much, much easier to look after than your husband. I bet many of those same posters who are slating you, are also the same ones who have never been in your shoes for any length of time. I hope you find a solution.

SleepDeprived
Pain clinics can be very hit and miss and it takes ages to access them. My local one is dreadful and appointments were 3 monthly even when I was in the system. However it is a good idea. As is therapy for op. I saw a pain management specialist privately. He was much better.

In sickness and health ! I hope you never need anyone to help you because Karma finds you and one day it will kick you in the arse. You knew the condition he had, you choose to have children with him and now the going is tough you are unwilling to help him. Nice

I am going say YANBU. But if money is already tight, forking out for an adapted taxi every time you want to go out as a family is only going to make it tighter, or risk isolating you and dh as he either won't go or has to travel separately.

IMO you need to prioritise the funds for a larger, adapted vehicle with hoist or even ramps so DH can ride his chair up and be secured in, and ensure anyone who you might go out as a family with can be insured on it, even if it's an ad-hoc payment.

He is being U to expect you to lift a chair every time but if you are already doing this with a heavy pushchair I can see why he might think it is no trouble. Definitely get the shoulder seen to as your twins are still young so you're going to have at least another year of lugging a double buggy in and out. Even twin strollers are heavy because of course they are double the weight nearly of a single stroller. Or is switching to a single and a harness for a twin to sit on DH's lap an occasional option?

To those talking about the chairs being lighter and saying they’re easier to lift, it’s not just about the weight. It’s not like lifting a bag of shopping or even a small child in/out of a car. You move your body in a completely different way than usual. Your reach is longer and the very way you bend over to pick the chair up, is different. Your then moving something that weight is ‘away’ from your body, as opposed to being close, such as shopping or a child. You’re reaching away from your body in order to balance it. We were always advised and advised the relatives of patients to lift the chairs as little as possible.

It’s really not about how disabled the IP’s husband is and more about the strain being put on the OP’s body. OP, would it be worth you or your husband cutting your hours at work so it can bring you under the threshold, so you are entitled to the help you need?

At what point does the 'you should have considered that before you married him' arguement become moot?

I would think it’s when the partner has a degenerative disease that you knew about before making the decision to marry them or have children with them. That’s a pretty clear ‘not some random shit life threw up along the way’ point.

I have read the thread and it is really hard to understand the OP’s resentment when this is not some piece of random bad luck but rather something that was factored into their life from the beginning. For most degenerative diseases I would have factored being a carer in when I made the decision to marry and then factored being a carer plus essentially a single parent in when making the decision whether to have children. To turn around after the fact and resent the other person, complain they require care and can’t pull an equal parenting load and essentially are an impossible hassle seems odd.

Some of you people are mean. I have MS, and whilst I gladly accept my DP's help when I need it (which thankfully isn't all the time - yet) I don't expect her to injure herself in doing so.

OP, you are absolutely not BU. You need to put your own health first - if that breaks down you won't be caring for anyone. You sound exhausted. Get a referral to Adult Social Care, you will need assistance and probably respite going forward.

You sound completely done in but the anger you're aiming at your husband really isn't healthy. Threatening to abandon him and take the kids because he makes "stupid mistakes" is downright abusive. Saying he irritates you when he walks slowly? That he huffs and puffs when struggling? Your kids are watching you. Someday they may take care of you. And that's really nasty behaviour.

I wouldn't lift the chair either. I'd get a mobility car that the electric chair can be driven into. I agree you need to have boundaries and look after yourself. But you need to find a way to curb the vitriol coming out at him. He sounds like he's doing his best and this all only going to get worse.

As a disabled wheelchair user I would say that you have to consider what your body needs to stay healthy and strong.

If you end up in worse physical condition that will help no-one
You have kids and a disabled DH. Love him and also insist on the hoist.

You have to be careful for the families sake.