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Original poster

Giving up work to both be carers - has anyone done this

23 replies

OpportunityOrange · 15/09/2022 20:10

Has anyone done this if they have disabled dc? We are at breaking point and have made the decision to go ahead and both become carers. I want to make sure it doesn’t impact on our relationship though as I feel time apart through work was a good thing .

Im assuming there’s a period of adjustment and I was just wondering are there any other couples / part of a couple on here that have done this. I know it’s the right thing for us but it is still daunting in a lot of ways

OP posts:
Original poster
OpportunityOrange · 15/09/2022 20:47

Also I think we are both worried about being judged as in the past have had people say they don’t understand why we struggle so much but they aren’t with us 24/7 so it’s hard feeling like we have to explain ourselves anyway but now we both will be at home full time I’m worried it will get worse

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MarmiteCoriander · 15/09/2022 20:51

I don't have personal experience, but have some experience working with disabled children and families. I would ensure that you have addition, back up support and respite- often. So DC is used to the other carer along with giving you and DH a break, together, with no kids time to time. It would also be a back up incase either of you get ill or for whatever reason, can't be there. ❤

imip · 15/09/2022 20:52

Can you both go part time? Is that an option. I have recently gone to being a carer again and I feel a bit put out that dh works full time. I am ‘better’ at being a carer and a reasonable advocate for my dc (a number have disabilities). We were going ok sharing the responsibilities between us, but they just needed more at home. Wonder if you are both able to work part time might give you both a life away from each other - caring at home together full time may be tough.

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Families
Notplayingball · 15/09/2022 20:52

Do what is best in your own personal circumstances. No one knows what you are living day to day like.

I am a SAHM but my youngest is on the pathway for an autism diagnosis and when he is not in school it's incredibly stressful for us. DH is off work due to stress. When DS is in school we get respite.

Do what is best for your family.

Original poster
OpportunityOrange · 15/09/2022 20:53

MarmiteCoriander · 15/09/2022 20:51

I don't have personal experience, but have some experience working with disabled children and families. I would ensure that you have addition, back up support and respite- often. So DC is used to the other carer along with giving you and DH a break, together, with no kids time to time. It would also be a back up incase either of you get ill or for whatever reason, can't be there. ❤

I’m going to look into it. Currently at the moment we feel more like Co workers in some kind of medical childcare setting if I’m totally honest. We just don’t have time for an actual relationship as a couple if that makes sense

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Original poster
OpportunityOrange · 15/09/2022 20:56

imip · 15/09/2022 20:52

Can you both go part time? Is that an option. I have recently gone to being a carer again and I feel a bit put out that dh works full time. I am ‘better’ at being a carer and a reasonable advocate for my dc (a number have disabilities). We were going ok sharing the responsibilities between us, but they just needed more at home. Wonder if you are both able to work part time might give you both a life away from each other - caring at home together full time may be tough.

That’s what we have tried over the last few years we both went part time and didn’t help. Then dh went full time and I gave up but still wasn’t helping so dh went part time and things got worse so now we are here at our last resort decision. I had a complete breakdown a few months ago and we have no family support at all so this feels like the only option left and I’m worried somehow this won’t work out as well as I’m anxious that we will end up noting each other if that makes sense. I’m going to look into respite as I think that may be key

OP posts:
OneFrenchEgg · 15/09/2022 21:01

I would think really carefully about this - can you get a respite package instead from the local authority if your child needs two carers? Are you in touch with disabled Childrens team (if your social services is split like that)? That would be by first port of call, asking for an assessment.

SomethingNastyInTheBallPool · 15/09/2022 21:05

How old is your child, OP? Do you get any sort of break while your DC is at school?

My DP and I both work part-time and share the caring responsibilities. As a PP said, it gives us both a chance to be our non-carer selves for part of the week and lets us peek our heads above the caring parapet and think about other things.

I’d be really worried about the financial implications of not having any income from work. Have you had any help from social services? They may be able to offer you some respite so you don’t need to take such a big step.

Original poster
OpportunityOrange · 15/09/2022 21:19

OneFrenchEgg · 15/09/2022 21:01

I would think really carefully about this - can you get a respite package instead from the local authority if your child needs two carers? Are you in touch with disabled Childrens team (if your social services is split like that)? That would be by first port of call, asking for an assessment.

A few years ago we had an assessment and were told not disabled enough for the CWD team to help and we couldn’t be placed on CIN either as didn’t meet the criteria so nobody could help. Case closed. I queried as received high rate dla but was told ‘it isn’t that simple’.
At one point we got direct payments for activities and help with care but after trying to find a PA and failing completely we gave up on that. We trialed 4 different PAs and they all gave up

OP posts:
OneFrenchEgg · 15/09/2022 21:29

Oh op that's tough. Can you revisit if things have changed? I'd also really worry about income - one of you would probably qualify for caring responsibilities but would both? Or would one of you have to be actively job hunting and proving it?

UnshakenNeedsStirring · 15/09/2022 21:42

Carers allowance isnt great. How are you going to manage financially if you both dont work?

x2boys · 15/09/2022 21:49

I think it depends on your finances and housing etc I gaveup a well paid job as a nurse to be my severely autistic sons full time carer ,bit we had just been lucky to move into a housing association House, with cheap rent ,we live in a cheap rent area anyway but our housing situation became secure ,my dh is a low paid full time worker we get tax credits ,carers allowance, my son gets DLA at the highest rates so we have a mobility car it's worked out OK for us but its very individual.

Original poster
OpportunityOrange · 15/09/2022 21:55

I just tired a long response and it disappeared 🤦‍♀️😭

We both get carers so we won’t be required to do work related activity. I think UC will just be adjusted to have us both as carers and whatever elements they will give us ? We have to switch over from tax credits

OP posts:
Original poster
OpportunityOrange · 15/09/2022 21:56

OneFrenchEgg · 15/09/2022 21:29

Oh op that's tough. Can you revisit if things have changed? I'd also really worry about income - one of you would probably qualify for caring responsibilities but would both? Or would one of you have to be actively job hunting and proving it?

Yes definitely I’m seeing this as a break not a forever thing because at some point when things are hopefully a little easier we can go back to working 🙏

OP posts:
x2boys · 15/09/2022 21:57

Absolutely no judgement I have one severely disabled child and its hard enough, but just make sure you have looked into exactly what you would be entitled to and if it covers everything.

SomethingNastyInTheBallPool · 15/09/2022 22:05

You can also demand a carer’s needs assessment, in addition to a Child In Need assessment, OP. It’s a legal entitlement. We had to really push for it but ended up getting some 2-1 care for our daughter at the weekend to give us a break.

FrownedUpon · 15/09/2022 22:07

That sounds really suffocating. I’d hate it. You’ll both need to make time for individual time/hobbies away from the house.

Original poster
OpportunityOrange · 15/09/2022 22:08

SomethingNastyInTheBallPool · 15/09/2022 22:05

You can also demand a carer’s needs assessment, in addition to a Child In Need assessment, OP. It’s a legal entitlement. We had to really push for it but ended up getting some 2-1 care for our daughter at the weekend to give us a break.

Is this from the gp? We asked and got told no that all they do is add to our notes we are carers ?

OP posts:
Original poster
OpportunityOrange · 15/09/2022 22:09

FrownedUpon · 15/09/2022 22:07

That sounds really suffocating. I’d hate it. You’ll both need to make time for individual time/hobbies away from the house.

This is what is worrying me

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SomethingNastyInTheBallPool · 15/09/2022 22:13

@OpportunityOrange No, it’s from social services. In our LA it’s the 0-25 children with disabilities team that does the assessment both for the disabled child and the carers. You can find information about this team on the local offer page of the website.

Also, talk to SENDIASS. They should be able to offer advice and signpost you.

Original poster
OpportunityOrange · 15/09/2022 22:25

SomethingNastyInTheBallPool · 15/09/2022 22:13

@OpportunityOrange No, it’s from social services. In our LA it’s the 0-25 children with disabilities team that does the assessment both for the disabled child and the carers. You can find information about this team on the local offer page of the website.

Also, talk to SENDIASS. They should be able to offer advice and signpost you.

Thanks I’ll try to get hold of someone tomorrow to see if I can get it sorted out

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forlornlorna1 · 15/09/2022 22:28

My dh and I did it some years ago for a couple of years. I was at breaking point. Dh was made redundant and so had some time to help. And we decided to stay that way until our child was easier to care for. Dh then went back to work once I could cope better.

It was very tough financially though omg! Literally pennies left at the end of the week. But honestly I am sure I'd have had a breakdown if we hadn't taken that step.

Original poster
OpportunityOrange · 15/09/2022 22:37

forlornlorna1 · 15/09/2022 22:28

My dh and I did it some years ago for a couple of years. I was at breaking point. Dh was made redundant and so had some time to help. And we decided to stay that way until our child was easier to care for. Dh then went back to work once I could cope better.

It was very tough financially though omg! Literally pennies left at the end of the week. But honestly I am sure I'd have had a breakdown if we hadn't taken that step.

This is where we are at sadly. I’ve had a breakdown and am in a bit of a mess so trying to deal with my own MH plus everything else was just too much. I’m hoping we can at some point get back to working but for now I feel like we need to just stop and try to repair ourselves and find some kind of support

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