Page 3 | Cannot visit dh in hospital with cancer because we have a disabled child

ZZpop · 2023-04-29T02:35:11+00:00

Dh has cancer and will be having hospital treatment in a hospital 2 hours away for a few months and is likely to be during school holidays. We have a severely autistic teenager. We have been given support in the home but have been told that because of ds's needs I am expected to be there all the time which means outside school hours I cannot leave the house unless ds is with me and I cannot visit dh. AIBU to think this is unreasonable?

TrueScrumptious · 29/04/2023 11:28

FatGirlSwim · 29/04/2023 09:56

And a mastectomy is not day treatment!!

It most definitely is. I’ve had two. It’s less than a day. In at 8am, home by 3pm.

Blondeshavemorefun · 29/04/2023 11:37

Sorry to hear about your dh

I have 2 friends going through similar and yes they are staying at hospital for the treatment

It's great you have a carer to help with your son

I get why they want you / an additional adult for support

So can you see if they agree to another adult being there with them

So a friend neighbour or even pay a nanny to come for a few hours

FatGirlSwim · 29/04/2023 11:44

TrueScrumptious · 29/04/2023 11:28

It most definitely is. I’ve had two. It’s less than a day. In at 8am, home by 3pm.

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I stand corrected! Two close friends have had mastectomies, one was in for five nights, the other three.

curlymom · 29/04/2023 11:51

Sorry to hear about your husband. I have been through similar but I do not have the problem with disabled child. I can’t really advise on that part but I would contact the hospital for any advice. Stay strong and best of luck. X

Nimbostratus100 · 29/04/2023 11:54

FatGirlSwim · 29/04/2023 09:56

And a mastectomy is not day treatment!!

It absolutely is!

JudgeRudy · 29/04/2023 11:54

Have you considered approaching someone from his school? Does he have a trusted support worker who might be prepared to do some ad hoc private work during the holidays. Most support workers are on a pretty low wage and could be up for some additional work particularly during the school holidays when they'll likely have some availability.
Of course, they'll need paying but I think widening your support network could be a wise thing to do. Situations like this will likely come up again from time to time.

Nimbostratus100 · 29/04/2023 11:54

even a double!

TrueScrumptious · 29/04/2023 11:56

FatGirlSwim · 29/04/2023 11:44

I stand corrected! Two close friends have had mastectomies, one was in for five nights, the other three.

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They probably had reconstructive surgery after the mastectomy. That would keep you in hospital longer.

Hankunamatata · 29/04/2023 11:59

Would there be the possibility of residential relief care over the holidays? I know may be pie in the sky as services are so stripped down

lljkk · 29/04/2023 12:11

OP hasn't said what she wants instead.

Support person to come with her to hospital?
Support person to cope with her teenager when neither she nor partner/nor another suitable adult is also there?
Additional support people in the home?

That level of need is pretty severe. What is in the best interest of the teenager, stay at home or go visit dad?

Thank goodness for TEAMS, facetime, WhatsApp, Zoom, Messenger...

Original poster

ZZpop · 29/04/2023 12:18

To answer some of the questions.
Dh is having chemo as a day patient. The second part requires a long stay in a non local hospital and it is likely to fall over the school holidays.

DS will not be visiting. He has no understanding of what is going on and wouldn't cope with hospital visiting

A package of care is being funded to effectively replace what dh does as the second carer for my son although they are providing 2:1 care because carers wouldn't work alone with my son.

Conditions are now being imposed upon what I am allowed to do so I cannot do the things that I would be able to do if it was dh and I as usual.

DS has a small amount of overnight respite elsewhere but no respite at home.

I in no way blame my son for any of this. He is a wonderful much loved young man.
I am angry with the system that treats families like ours this way. We have been in a series of meetings where we have been bullied eg told that if we ask for more support, our son will not be allowed to live with us, we should be grateful for what we get etc. I am fed up with it.

OP posts:

Pluvia · 29/04/2023 12:30

Blondeshavemorefun · 29/04/2023 11:37

Sorry to hear about your dh

I have 2 friends going through similar and yes they are staying at hospital for the treatment

It's great you have a carer to help with your son

I get why they want you / an additional adult for support

So can you see if they agree to another adult being there with them

So a friend neighbour or even pay a nanny to come for a few hours

I'm a good neighbour but I would be staggered if I was asked to look after a child with special needs so severe that it needed two adults to care for him. And it's going to be for at least six hours at a time, isn't it — two hours there, a visit of at least an hour and probably more if you've gone all that way, and then two hours home.

Even if there's a professional around, it's too much to ask friends and neighbours to give up what will effectively be a working day to be there — and how frequently?

I'm guessing that you would be imagining a female neighbour stepping up, too, Blondeshavemorefun, because no one would expect a man to give up so much precious time.

BoobsOnTheMoon · 29/04/2023 12:31

I'm appalled but not surprised to hear that you've been bullied into accepting a shitty level of support.

Tbh I'd call their bluff. Tell them you can't cope without your DH at home, and that you want DS taking into care. Don't worry, they won't take him. It's cheaper to keep him at home and provide support. But it'll stick a rocket up their arses and it'll show them that their threats don't scare you.

FatGirlSwim · 29/04/2023 12:33

TrueScrumptious · 29/04/2023 11:56

They probably had reconstructive surgery after the mastectomy. That would keep you in hospital longer.

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They did. Apologies for making assumptions.

FatGirlSwim · 29/04/2023 12:34

ZZpop · 29/04/2023 12:18

To answer some of the questions.
Dh is having chemo as a day patient. The second part requires a long stay in a non local hospital and it is likely to fall over the school holidays.

DS will not be visiting. He has no understanding of what is going on and wouldn't cope with hospital visiting

A package of care is being funded to effectively replace what dh does as the second carer for my son although they are providing 2:1 care because carers wouldn't work alone with my son.

Conditions are now being imposed upon what I am allowed to do so I cannot do the things that I would be able to do if it was dh and I as usual.

DS has a small amount of overnight respite elsewhere but no respite at home.

I in no way blame my son for any of this. He is a wonderful much loved young man.
I am angry with the system that treats families like ours this way. We have been in a series of meetings where we have been bullied eg told that if we ask for more support, our son will not be allowed to live with us, we should be grateful for what we get etc. I am fed up with it.

This is appalling. With two carers, you should be able to go out. It is respite for you as much as anything else.

T1Dmama · 29/04/2023 12:42

Surely your local authority can provide you with respite for at least part of the school holidays!… although no doubt the places are fewer than the need!!
If the local authority are providing 2:1 support why do you also need to be there as that means he’s receiving 3:1 support which clearly isn’t what they’ve assessed him as needing?!
I worked in a care home for severe learning disabilities and challenging behaviour and we had a ratio of 2:5 in the house and 2:1 out in public. I would ask for a detailed explanation in writing of why having 2:1 isn’t enough and why you are having unrealistic restrictions put on you (not being allowed to leave the house!)… surely this breaks discrimination laws and i’d be looking into the disability discrimination law 2010….

Can you call an organisation / charity that specialises in law around discrimination against Autistic individuals and their carers?

failing that do you have a social worker to help you fight your corner? Your local authority isn’t being supportive enough … the care is great but not if you’ve got all these restrictions on you… it’s more like having wardens in your home than carers!!

I know it’s not ideal but could your son live in a residential care home for a few weeks? Just while your husband and you are going through this situation?

Could your husband be transported to a more local hospital after his surgery to cut down on travel time for you? They won’t offer this as a solution unless you ask.

Finally do you not have any support from your parents/siblings or parent in laws/sibling in laws?? Failing that could you get hands on an ipad or iPhones x2 so you can at least video call each other daily while your husband is so far away.

Original poster

ZZpop · 29/04/2023 12:43

"Tbh I'd call their bluff. Tell them you can't cope without your DH at home, and that you want DS taking into care."

I've said that. They said that I can ask but they have nowhere to put him and would have to wait a long time for a place. ( which is true- there is a shortage of high needs placements)

OP posts:

Dexy007 · 29/04/2023 12:47

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T1Dmama · 29/04/2023 12:52

ZZpop · 29/04/2023 12:43

"Tbh I'd call their bluff. Tell them you can't cope without your DH at home, and that you want DS taking into care."

I've said that. They said that I can ask but they have nowhere to put him and would have to wait a long time for a place. ( which is true- there is a shortage of high needs placements)

They can’t bully you with the threat of taking him into a home if there aren’t any places! Tell them the package they are offering is great but that they either need to admit they can cope with the 2:1 provided or find a third person for a certain amount of hours a day because they are discriminating and this breaking laws by insisting that you have to be present 24/7!

Theyve either assessed him as needing 2:1 or 3:1 support and they need to supply that without relying on you being there!

T1Dmama · 29/04/2023 12:56

T1Dmama · 29/04/2023 12:52

They can’t bully you with the threat of taking him into a home if there aren’t any places! Tell them the package they are offering is great but that they either need to admit they can cope with the 2:1 provided or find a third person for a certain amount of hours a day because they are discriminating and this breaking laws by insisting that you have to be present 24/7!

Theyve either assessed him as needing 2:1 or 3:1 support and they need to supply that without relying on you being there!

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They need to find him emergency respite for that period… There are always places or ways round it! What would they do for example if you fell sick while your husband is in hospital and yourself needed a hospital stay! Don’t put up with their bull crap….. ask them what they’d do in that scenario and say ‘ok we’ll do that then’ thanks very much! Please phone an autistic charity and ask for advice

Original poster

ZZpop · 29/04/2023 13:10

"I certainly don’t think I’m a hero I just don’t stand for people putting disabled kids down. Shame on you all!"

This is about lack of support for carers.

OP posts:

Blondeshavemorefun · 29/04/2023 13:15

Pluvia · 29/04/2023 12:30

I'm a good neighbour but I would be staggered if I was asked to look after a child with special needs so severe that it needed two adults to care for him. And it's going to be for at least six hours at a time, isn't it — two hours there, a visit of at least an hour and probably more if you've gone all that way, and then two hours home.

Even if there's a professional around, it's too much to ask friends and neighbours to give up what will effectively be a working day to be there — and how frequently?

I'm guessing that you would be imagining a female neighbour stepping up, too, Blondeshavemorefun, because no one would expect a man to give up so much precious time.

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@Pluvia i would be more then happy to help a friend neighbour or family

maybe diff as I have nephews and nieces with sn so used to being around them

plus my job as a nanny /maternity nurse I’ve worked with sn children

if a neighbour friend family won’t help then my previous post did suggest paying a nanny as well

maybe @ZZpop can get extra funding to help

justgettingthroughtheday · 29/04/2023 13:19

Have they given a specific reason you need to be there?

I would speak with the school and see if any of his TAs might consider offering some additional support? It's a very long shot I know but they might be willing to accept one of his known TAs as a familiar and safe adult to be at home alongside the other carers. He'd then have 3:1 care. And a familiar face who knows and understands all his needs.

FatGirlSwim · 29/04/2023 13:20

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Which nobody here is doing. Why don’t you just leave it now?

Pluvia · 29/04/2023 13:23

@Pluviai would be more then happy to help a friend neighbour or family

You'd work for free for six hours at a time because the LA couldn't / wouldn't provide professional help? How many days a week would you be take on? Unpaid, obviously, because the OP isn't being given any more money to help.