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

It sounds like you don't like your husband.
You don't have to become his carer.

If you both knew wheelchair use was coming down the line, did you discuss what you would do as a couple?

3 babies with a partner who has significant care needs sounds shit.

YANBU. Family life will be even harder if you become injured and can't manage every day tasks.

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

Sounds like you have no sympathy for him at all. Didn't it ever occur to you that this day would come, and that you as his partner would have to step up and be his carer ? That you'd have to listen to his huffing and puffing? It seems as if you both sleepwalked into the future with no real plan for how you'd deal with it.

For people saying that the op ' should have known'... perhaps you all should get some empathy yourselves.

Did OP know in advance she would have twins?
Or exactly how much strain it would all be?
Did she know that her DH 's condition would get worse when her kids were so small....?

OP - all famies have to do what is right for them at the time.

EVERYONE is utterly dependent on you, so you are definitely NOT being unreasonable by taking care of your physical health.

Everyone who thinks you are can just pipe down.

• families

And I meant to say- just because you need to scale back on heavy lifting now, doesn't mean you will have to forever.

Look after yourself 😊

I don’t think it sounds like op doesn’t like her dh. I also don’t think her attitude sounds disgusting. I know my dh gets pretty hacked off living with me and my disability and I can walk - most of the time. If you haven’t lived with it day to day, you really have no idea.

For what it’s worth I have little ramps that go on and off the car so I can push my DD’s wheelchair on and off. It wouldn’t work with the taxi as you’d have to carry the ramps but it could help with your mum’s car and you could also use the ramp for the buggy.

It does sound like you have more fundamental problems in your relationship than lifting the wheelchair though.

@mathanxiety is that a joke?

Why would it be a joke? I’m disabled. My life isn’t spontaneous. All planned.

I'm confused. If he gets rid of the electric heavy chair, does that mean he'll need to be pushed everywhere?

A fold up wheelchair is very light, you can get some that are even lighter than a buggy - my mum had one of these and I was able to put it in and out of the car (I have disabilities myself). I think it’s sad that effectively you’re trying to segregate your dh from coming out with you all by saying he has to get an adaptive taxi - on his own? I think you need to look at either swapping for a new vehicle that you can effectively push the wheelchair into or really search for a very lightweight chair.

If you are going in your Mums car will
Your Mum be with you? Would she be able to help you?

Some of these messages are harsh & written by people who appear to have no experience of being long term carers.

It is frustrating and exhausting having someone emotionally and physically dependent on you. It is frustrating and exhausting having to be emotionally and physically dependent on one person.

This is a new situation the op is in. She is asking for advice how to make sensible decisions for the long term because she does care, not because she doesn’t like her husband.

Reading between your lines, the wheelchair is not the main problem. do you have any access to support for yourself - you are not superwoman, partners of disabled people are often struggling. there are sone support groups around, and they will be more useful for you than munsnet where most people don’t have an idea what it is like (and happily say they would martyr themselves 24/7 - in reality they won’t)

I don’t think you are being unreasonable. If something happens to you, then it will impact on him and the children. I get that he is disabled, but this doesn’t mean not thinking about your needs as well.

I feel so sorry for your DH. Why on earth have children with a man you have so little respect for?

Is he in a leccy wc? He suse alot if tye manual ones are really not heavy, Mt friend has one that weighs just 5kg and is able to to set it yo herself, so she's pretty independent considering.

I think you are being completely reasonable. The majority of the time you will be in the family car with the hoist and there is no problem. Surely it's only very occasionally you will all be traveling without the hoist, in which case there is no one to lift the chair and so he will have to travel separately.

If you're going in your mother's car will someone have to put in the carseats for the children too?

I actually think you're being sensible to pace yourself - it's a marathon not a sprint and as his condition is degenerative you can't risk damaging yourself further unnecessarily and being unable to do physical tasks longer term.

Boundaries are important, though of course you need to be empathetic in your communication.

The situation is emotionally and psychologically hard for both of you in different ways, and it sounds as though you've both got your defences up.

The need for a new type of wheelchair is a kind of milestone transition along the path of his illness and whether you both admit it or not this will be playing on both your minds because of what it symbolises for your joint and individual futures.

Be thoughtful with your communication rather than giving up on your boundaries. You do need to look after yourself physically as well as mentally, and as well as wanting you to do this because he loves you, your husband should see that's also in his long term interest.

OP your husband needs to keep the electric wheelchair it is so much easier than an ordinary one for day to day use. You could find a lightweight one for emergencies but to be honest you are right to know your own limitations. Your family’s daily functioning will rest on your shoulders even more in the future and if you’re not fit and healthy it won’t work.

The posts criticising you are written by people with no experience of caring for someone in a wheelchair. It’s really not that simple and it’s not like folding a buggy and popping it in the boot. Even the light ones are awkward and frankly you’ll be doing this plus looking after 3 kids and all their paraphernalia. You sound as though you have an awful lot on your plate already and it’s not going to get easier.

Making daily life so much harder for the rare occasion that you will need separate transport is daft and frankly selfish of your DH. You all have needs not just him.

Look after yourself physically and mentally and that includes setting boundaries.
If you end up out of commission, your family will be stuck. And despite your best efforts there may well be times when you may not be well enough to do all the lifting/ carrying/ driving. What is your contingency plan if that happens?

What is your support network? You have a lot on your plate and given your husband's condition is degenerative, it is likely to get harder. Do you have a safe place you can vent? Family? Carers' network? Support group for family members of people with your husband's condition?

Try and get a physio referral for your existing shoulder problems, if you haven't already. They may also be able to advise you on safe lifting.

You have a lot going on.
I can understand how you might be reluctant to start lifting and also the need to preserve yourself given the circumstances of three small dependants and a dh who is limited mobility.
Do your husband have any other carer s who might be able to help or is it an option to hire or have some carer hours so the pressure is off you ?
Is it possible to meet with his therapy team (OT? ) and voice your concerns for managing the situation ?
How heavy will the new WC be ? Can the wheels come off and it be lifted into the boot in separate pieces ? Can a case be made due to your own condition that an extra light chair be ordered ?

hawaiianturtle Mon 20-Jan-20 06:08:07

mathanxiety is that a joke?

No, not at all.
Even as a mother of several small children my life lost 99% of its spontaneity. My days revolved around naptime and mealtimes and the school runs. A trip to the supermarket had to be take place in the brief window between DC's breakfast/ poop and lunchtime. After lunch came naptime, and after that came the school run, followed by various things that had to be done in the afternoon (homework, getting dinner together, getting someone to an after school activity, whatever). If I wanted to get some exercise for an hour, that time had to be negotiated with my now exH. If I didn't get a shower before he left in the morning I often couldn't get that done until naptime.

We went on holidays to places no more than five hours from home that the DCs would enjoy and that we would also be able to relax and have a little fun at - beaches for the most part, though exH once rented a cabin by a lake that had a little jetty that DD3 couldn't keep away from. While away, we took trips to zoos and petting zoos and played mini golf, went on hay rides. We bought ice cream in the afternoons. We kept our expectations reasonable and most of the time planned holidays that were far more child-friendly than adult-oriented.

Sometimes we went on holiday with exMIL who unfortunately liked the mountains, where you couldn't let children out to run around outside a rented house because of bears or snakes or sheer drops or open bodies of water (Colorado and Wyoming in summer). She once rented a house for an extended family holiday that had three storeys and no stairgates. It was the most gorgeous house I had ever been in but completely unsuitable for toddlers. The trip to get there was also unsuitable for toddlers - two full days in a carseat, but heyho.

When you don't have small children you can stick a pin in a map and go there, spend all evening sipping margaritas on a deck looking at a glorious mountain sunset, get up at 9am the next day, hop into the car and go exploring some trail for six hours. The parents of babies and small children on that particular trip spent a lot of time keeping their offspring from killing themselves.

You must look after your own health, that's paramount, because if you are injured or incapacitated that will make your life even more difficult, and you have a lot on your plate. It's not selfish to do so, but wise.