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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Original poster

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

105 replies

ZZpop · 29/04/2023 03:35

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?

OP posts:
PollyPeptide · 29/04/2023 03:49

Aren't there evening visiting hours? Isn't that what you have to do if you're working?

However, if you're talking about taking your husband into hospital, etc, I'm sure they'll give your son the day off so you can take him, etc. Do you have a relative that could stay home with your son during the day while you go visit?

parietal · 29/04/2023 04:33

how long will DH be in hospital for? do you have any family support?

is the local authority funding home support or respite for your DS? are there any other places that might give respite? I know it is very hard to access, but I guess that is what you need.

Bloopsie · 29/04/2023 07:44

Cant you visit while your child is at school?

BoobsOnTheMoon · 29/04/2023 07:47

Bloopsie · 29/04/2023 07:44

Cant you visit while your child is at school?

Can't you read? OP specifically said that her DH will be in hospital over the school holidays. When children don't go to school, that being the nature of school holidays.

@ZZpop are you in touch with your local parent carer network? They may be able to suggest things or advocate for you. Who has arranged the support in the home? Has your child had a disability needs assessment from social services?

Bloopsie · 29/04/2023 07:49

BoobsOnTheMoon · 29/04/2023 07:47

Can't you read? OP specifically said that her DH will be in hospital over the school holidays. When children don't go to school, that being the nature of school holidays.

@ZZpop are you in touch with your local parent carer network? They may be able to suggest things or advocate for you. Who has arranged the support in the home? Has your child had a disability needs assessment from social services?

Show quote history

Do you need to be rude?

widowtwankywashroom · 29/04/2023 07:58

Is your husband attending for chemo ie going in for daily treatment for surgery where he will be in for some time after?
I am confused as to how long you think he'll be in for.
If its regular treatment in a day centre for months, why do you need to visit, if its surgery, then he might not be in for months?

CosyCoffee · 29/04/2023 08:01

@Bloopsie it's quite rude not to read the OP properly before replying.

NerrSnerr · 29/04/2023 08:15

Will he be an inpatient for those two months or will he be in and out?

Is it the local authority who have put in the support in the home? Have you spoken to them about this specific situation with your husband to see if they can offer further support?

Timeforabiscuit · 29/04/2023 08:22

If your dh is traveling daily for radiotherapy or chemotherapy, would passenger transport be an option? If you speak to the Mcmillan nurse or the actual unit they'll be going to they'll be able to give more information.

You dh will be able to get to his treatment, people do rally round, is there anyone from work he can talk to?

But I don't think it's the organisation that's the problem, do you want to be there for your husband but your other caring is also there? Can you access counselling to talk through this? Supporting someone with cancer is tough enough, let alone when you have significant caring already.

Sleepydaffodil · 29/04/2023 08:25

Have you considered talking this through with a McMillan nurse? They’re really helpful and will probably have dealt with families with similar predicaments and may have some suggestions.

MrsRobinsonsHandprints · 29/04/2023 08:29

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

I feel this answers most of the pps questions, and I agree not reading the op is rude.

No op you are not BU. Agree with talking to Macmillian, are there any local charities?

AndIKnewYouMeantIt · 29/04/2023 08:33

I'm sure how helpful the support is if you need to be there to supervise the help!

I would speak to the organisation again and see if some actual respite is available.

Best wishes to your DH 💐

QuintanaRoo · 29/04/2023 08:37

CosyCoffee · 29/04/2023 08:01

@Bloopsie it's quite rude not to read the OP properly before replying.

I have dyslexia and adhd and miss stuff when I’m reading. I thought I’d read the OP but had also missed this so it’s actually quite ableist and rude to make assumptions about reasons for not reading posts properly and then be so horrible about it.

OP, I hope you manage to get some support so you can visit dh, maybe a relative who could come and be in the house while the support is there? I’m assuming your ds needs are so much that he can’t go to the hospital with you?

Dexy007 · 29/04/2023 08:40

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Timeforabiscuit · 29/04/2023 08:46

@Dexy007 theres no need for that, have you gone through a situation like this?

Gtsr443 · 29/04/2023 08:47

You need a new care assessment.

Contact them to say circumstances have changed because of your DHs illness and you need a higher level of support for your DS because you need to be able to leave him.
Is there any day care available near you? Somewhere you could drop your son off?

maddening · 29/04/2023 08:49

How can anyone dictate that you can't leave? Is there another adult who could stay with ds and if so how can the organisation dictate that you could not do that?

It seems crazy that it is so hard to get help, they don't give a shit and leave parents in awful situations with no support but if they do give support they then dictate to you in this way! There must be a way you can challenge this, particularly with your dh circumstances.

Hope dh makes a good recovery op x

badgermushrooms · 29/04/2023 08:49

Can people please back the fuck off the OP and only offer advice if you're able to be civil about it? I have been where she is, minus having to worry about childcare. She will be overwhelmed and terrified and yes maybe not thinking straight because who the fuck does when your life starts to fall apart like this?

OP, if you haven't already please consider making contact with Maggie's and talking this through with them - they may have some good ideas. If there isn't a Maggie's Centre at your local hospital there may be one at the specialist one and you can talk to them on the phone, you don't need to go in.

This is going to be really hard but you will be amazed at what you can bear.

Bubblesoffun · 29/04/2023 08:57

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QuickNameChangeForMeToday · 29/04/2023 08:57

I know it’s easier said than done but firstly try not to panic. Also please don’t think any of my suggestions are said flippantly, I am aware of how heartbroken and conflicted you must feel - remember, you can only make the best decision with the information and availability at the time.

Im assuming you have a named social worker? Call them and explain there has been a life altering change in family circumstances and you need help looking at independent care for your DS (probably 2/1 given the current need for you to stay home).
Respite care is also worth considering at this age, it can often help with the transition to independent (supported or group) living in the future.

Speak with the McMillan nurse assigned to your family. They can provide a wealth of connections and advice too.

EggInANest · 29/04/2023 08:59

OP, sorry you have encountered the AIBU vibe at its finest…

I would try posting on the SEN board about getting proper meaningful care / respite.

So sorry you and your DH are having to deal with this.

Dymaxion · 29/04/2023 09:13

What help do you need OP ? as in what would be your ideal scenario, so for example, someone to be with DC so you can visit your DH post surgery ? Have you been given any idea how long he will be an inpatient for ?

Dymaxion · 29/04/2023 09:16

Sorry, meant to add wishing your DH all the best with his treatment Flowers

Dexy007 · 29/04/2023 09:17

sorry to hear you also think that’s an ok to talk about a disabled child!

Dexy007 · 29/04/2023 09:19

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