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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Leaving work to care for disabled husband

40 replies

Confusedmum34 · 13/08/2021 13:04

Hi everyone
I dont know if I'm posting in the right place but I need some advise.

My husband is disabled so is unable to work. I'm the full time worker always have been. We have a 6 year old daughter.

Now my job isn't the best pay is ok 25k a year for a really stressful job. I work in housing so it's bad at the minute.
My husband has degenerative spinal disease so it's quiet bad at the minute. He cant walk properly (has a motability scooter) he has lost all muscle in his legs and has gained so much weight because of his crumbling spine.

In 2012 this happened he had a mri and we knew it was bad. Fast forward to Now he had another mri done about a month go and now from tbr middle of his back down the discs are bulging and degrading rapidly. (First mri since 2012)
He can't do much on his own anymore I have to help him shop wash granted he can still cook with a perching stool for the kitchen.
We were talking about me maybe becoming his career full time. That would mean if have to leave work
I'm just worried about it all. My husbands health is priory he's fallen down the stairs a few times and it's taken weeks for him to even be able to move properly afterwards.

Has anyone done it and been ok? I know i can do these calculators for help we could get but I'm worried we wouldn't get the help.

I'm not looking to go on benefits to have a better life and not work far from. I just want my husband to be ok and for our family to be ok.

Thanks for listening if you got this far
X

OP posts:

Thedayohthedayohtheday · 13/08/2021 14:42

I would try to think about how he would manage if he lived alone, and follow that route. I'm a carer for my husband, but I'm older than you. I think that you need your job for your sanity, and your husband needs carers to come in and help him.

Orf1abc · 13/08/2021 14:44

If he is in receipt of PIP care then you are entitled to claim Carers Allowance. You do not need to prove the care you provide, his level of care needs is proven by his PIP entitlement.

Social care funding varies dramatically across the country, and CHC funding is incredibly difficult to get. Your husband is entitled to an assessment of his care needs, and you are entitled to an assessment as a carer, but the reality is that the council will do everything to minimise what they need to spend, because they're skint. Note that the social care assessment is completely separate from PIP, the same criteria does not apply.

Regarding giving up work, try to find something that is still for you. Carers can easily become isolated, particularly if you already have some mental health struggles. That might be voluntary work, which could be more flexible than paid work, but anything that maintains some independence and experience.

Akire · 13/08/2021 14:47

My mistake thought it was on automatic on higher enhanced PIP care not lower. Seems not , well that’s one less hurdle if you do decide to go for it.

RB68 · 13/08/2021 14:53

you have to think of beyond when DH is here, your child is only 6 and you have 12 to 13 yrs still caring for the child/young adult in FE/HE. Also you need to have a plan for your own retirement if you can. Were your husband not be around you will need to work to survive so you need to ensure you are still gaining experience for that front - a long gap in employment to care for someone won't get you a job sorry to say. So while you need to ensure his needs are met, you and your child also have needs which are just as important and need to be in the mix.

As for working from home - I think you need to be open with employer that really you don't have the facilities for that long term, your DHs needs are too high and space at a premium etc. Carers calling in is all well and good until there is a fall - if he is going to be moving around and being a danger to himself then the care need is alot higher than that. In terms of being v overweight that is not caused by his back condition - sorry but its not. He has a responsibility to look after himself as much as possible to assist you in caring for him. If he is super overweight then you will have carer issues as there will need to be two of them

WiddlinDiddlin · 13/08/2021 15:03

If he is in receipt of PIP care then you are entitled to claim Carers Allowance. You do not need to prove the care you provide, his level of care needs is proven by his PIP entitlement.

Only if you are earning under £128 per week after tax. But yes you don't have to prove the care is needed and provided.

Intercity225 · 13/08/2021 16:27

and CHC funding is incredibly difficult to get.

It depends what the problem is. They did the checklist, had some sort of meeting possibly with SS; and it was approved straightaway, without a quibble! DD has uncontrollable epilepsy, which is a priority need; there was nothing to argue about!

Tomanyhandbags · 13/08/2021 18:13

I had to do this for my husband 3 years ago, we were both working ft when he suddenly became disabled, our situation is slightly different in that we do not have children but our PIP, carers allowance and UC gives us a monthly income of just over £2000pcm. Although it can be difficult to become a carer especially when like me you get no outside help I know I am on hand to meet his needs and provide support so this gives us both peace of mind and means his life is run to his daily needs rather than a strict timetable as with carers visiting, so if he needs a lie in cos he had a bad night, wants to stay up to watch a programme or wants to eat earlier or later he can. I tried working for a while but found it to stressful as I was worried about falls or taking medication correctly and trying to arrange work around appointments was difficult. At the time it felt like the end of the world for both of us but with hindsight has brought us much closer and actually deepened our relationship. I don't like being referred to as his carer as I see myself more as purely a wife who does a extra.

purdypuma · 14/08/2021 09:03

Obvious question given that you work in housing but have you asked your HA to move you to a bungalow as that would mean easier for him to get around, less risk of falls etc.
Re the CAB, they're not doing a lot of in person work at the moment but if you ring their national number then they will arrange for you to receive any guidance by phone instead.
Ask for an occupational therapy assessment through adult social services for your local authority. They will be able to advise on what equipment he is entitled to & how this can be funded.

Original poster

Confusedmum34 · 16/08/2021 17:39

Purdypuma our HA won't move us as they have no bungalows.
We were lucky to get this house we have now.
He is able to dress himself at the moment he can shower but needs my help to get in and out.

We have asked our local council to help but they won't put in for a walk in shower as he can get up our stairs. And most walk in showers are downstairs. They are refusing to even see him. So my council is as much help as a chocolate tea pot.

Ots just so overwhelming. I'm looking at other jobs but they are all less than what I get now.
I was at work today and had a full on anexity attack when I opened my emails.

OP posts:

Babyroobs · 16/08/2021 18:27

Have a look at Uc. You can get the carers element even if working full time. Your husband could be assessed for Limited capability for work and work related activity which would give you more money on the claim once he has been assessed.

D1ngledanglers · 16/08/2021 20:29

As you're having difficulty accessing ASC, I suggest making a GP appointment for yourself re your anxiety. State how unsupported you feel; ask the GP for help.
GP should refer you to ASC for dh care act assessment, your carers assessment. GP can also refer to Health OT for equipment, who could then refer to ASC OT for adaptations / long term needs / Housing Needs Assessment.
Somehow you need to get this process moving to find out what the true options are for you both, before you experience a breakdown.

HavelockVetinari · 16/08/2021 20:41

Try to stay employed if you can - as your DH gets more and more disabled your world will shrink again and again until you have no life of your own (and nor will your DD).

The council has a duty to help, this is NOT social care, it's medical. There are charities that will help you advocate for carers, there's a list here:

carers.org/grants-and-discounts/charities-that-support-carers

Use your DH's PIP to buy in help. It's not OK for you to be working full time AND doing all the childcare AND caring for your DH.

HavelockVetinari · 16/08/2021 20:43

N.B. if social services or the council get a mere hint that you might quit your job they'll be on it instantly. They want to force spouses/family into being carers regardless of what's best for you, because it saves a ton of money. Don't let that happen to you! Or your wee girl.

PlanDeRaccordement · 16/08/2021 20:51

You have gotten great advice here. I just wanted to say that if I were you, I would not stop working to care for my DH. This is purely because I am a small woman and don’t have the physical strength to pick up or move a 6ft man to properly get him washed, dressed, or catch him if he’s falling. Too, realistically, even if you are physically able to do all this without injuring yourself or letting injury happen to him....how long can you do this before you are too old to do it? Then where does that leave you for your retirement?(sadly I think you know you will outlive him).

I’d do everything in my power to get social services to provide you with a carer or team of carers that come in and do all this. It’s not realistic for most women to have physical strength to do this work after age 45-50. It’s a young person’s job.

And you need to be earning to secure your own later life.

Cam2020 · 16/08/2021 20:53

I'd also look at getting carers in - your council can give your husband an assessment.

I'm sorry if this sounds horrible, but what happens if your husband dies a few years down the line? You'll lose your carer's allowance and any benefits he gets and you will have been out of tbe job market for some time. I also agree with PPs about your relationship suffering, speaking as someone who has been their partners FT carer whilst working from home for the past year and half. Your world become very narrow and lonely at times.

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