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What happens to child with disabled parent if carer parent dies? And how best to plan for it?

36 replies

Howtohelpmyfriend · 26/10/2023 13:09

Name changed because this is outing, get the long time MNer (cutted up pear, CentreParcs bumsex etc).

Posting on behalf of my friend ("Friend") who is in the middle of a serious health scare.Sorry it's long and complicated.

She is carer for her wife ("Wife") who has MS which affects her physically but also cognitively/executive function which is a relatively rare presentation. She also has various other medical issues that make her very unwell most of the time.

Wife is able to just about hold down a part time job but it's always touch and go. She has regular treatment and has had to quit jobs/stop work at points when her health is poorer. MS is relapsing-remitting but she's never been "back to normal" since her diagnosis. It's more "bad or worse" than "ill or well".

Friend works full time and is obviously the main earner and the main carer for their 2yo child ("Child"). Friend was birth parent to Child, but both Friend and Wife have legal parental responsibility.

Basically their home set up works only because Friend is able to hold everything together.

Wife does take care of the Child and they adore each other but only when Friend is around to at least indirectly supervise. The maximum she does is short walks/nursery pickup/ very short spells at home alone with her and only on her best days. On her bad days she is akin to an adult with a learning disability and is not safe alone with the Child.

Friend is now undergoing tests for something we all desperately hope is benign but may be very serious.

Until now the assumption has been that Friend is the well parent that holds it all together. This has suddenly put my friend into the awful position of having to think about what happens to her Child in a worst case scenario.

In the short term if she were ill/being treated friends and family can pitch in and help out. But if Friend were to die - how the hell does she make provision for her Child? And her Wife?

I said I'd help her do some research and wondered whether wise mumsnetters have any experience/ observations

Step 1 is obviously make a Will, which she will do - but what to put in it? If she dies, Wife will have parental responsibility so the default will be she has custody. No reason for anyone to get involved or think otherwise.

The quandry is - she won't be safe to look after the child alone. I assume social services would get involved when it gets to crisis point but obviously nobody wants it to get to that point. Is there any sort of pre -emptive assessment that social services could do in that case so that they know to swing into action if Friend died?

One option would be for Friend to leave custody of Child to get own brother or sister or even knew of her friends. But 1) could she even legally do that given wife has Parental Responsibility? 2) Is there a legal way that could be done whilst legally requiring they retaining some sort of right of visitation/access.

The ideal scenario is probably that Child stays with Wife, but in some sort of supported way but I don't know if that exists. Certainly the bond between Child and Wife is very strong, and it would be awful for Child if one mum died and then they were taken away from other Mum. Friend definitely feels Child would need wife if Friend died - but wouldn't be safe in her sole care.

Option of Wife and Child moving in with extended family would seem ideal but unlikely to work but maybe it's worth exploring. Wife has elderly parents but they are useless practically and don't help at all. Maybe it's an option but I'm not sure it's one that would give Friend much comfort. Friend's family are great but siblings live overseas and parents are also elderly and frail with health concerns.

What does she need to / is she able to do to plan for the worst? Having it sorted would give her peace I think. And this scare has made her realise it's something she needs to plan for proactively even if this current scare turns out not to be the worst. As you can imagine it's horrifying enough waiting for a diagnosis for something like this without "what the hell will happen to my child" running round your head as well.

I was wondering whether she can entrust one of us to notify social services and start a process if the worst were to happen. Should that be something she puts in a will? But even then there would be a period whilst Child was alone with Wife and not safe whilst that played out (and both grieving). Would SS then remove Child to foster care? Is there anything she can pre-emptively to avoid this? Specify a backup carer in case of SS removing the child so she doesn't go into the foster care system? Is that even necessary in a will, or would SS do that anyway?

Lots of think about but any advice or perspectives welcome. I've googled a bit but it's all quite genetic and this is quite a specific/difficult circumstance.

OP posts:
Howtohelpmyfriend · 26/10/2023 17:02

This is all incredibly helpful advice thank you.

I think Friend does realise she'll need to have a serious conversation with Wife at some point and also her family, and probably a solicitor and social services (whether or not this turns out to be anything serious this has made her realise its something she needs to think through and plan for in case she gets run over by a bus).

I've just offered to help with some research and exploring likely solutions etc to help share the mental load a bit. This thread has given me lots to look into. "What If plan" describes it well. She has such a lot on her plate I wanted to be able to at least triage some information for her 😔.

OP posts:
Woollyjumpersandtomatosoupweather · 26/10/2023 17:37

Does the wife really understand she is not physically able to care for the child without her friend? I think they both need to discuss and nominate a guardian (friend or family) who is known to the child who can step in and organise a nanny. However if the wife's health continues to deteriorate as well at what point does the guardian have to be responsible for the wife as well as the child. It's a huge ask of anyone.

notapizzaeater · 26/10/2023 17:42

I worked with a family a few years ago with a similar issue, the mum had twins and afterwards was diagnosed with progressive MS. she was wheelchair bound (and confused with other issues) but dad looked after the kids till he suddenly dropped dead. One of the children was ND and non verbal. The mum could not care for these children on her own, her mum could do a small amount of the caring but not all as she herself had a disabled husband. SS did everything they could to keep the family unit together and put a comprehensive package in place.

Howtohelpmyfriend · 26/10/2023 18:37

notapizzaeater · 26/10/2023 17:42

I worked with a family a few years ago with a similar issue, the mum had twins and afterwards was diagnosed with progressive MS. she was wheelchair bound (and confused with other issues) but dad looked after the kids till he suddenly dropped dead. One of the children was ND and non verbal. The mum could not care for these children on her own, her mum could do a small amount of the caring but not all as she herself had a disabled husband. SS did everything they could to keep the family unit together and put a comprehensive package in place.

That's really reassuring thank you

OP posts:
Howtohelpmyfriend · 26/10/2023 19:48

Woollyjumpersandtomatosoupweather · 26/10/2023 17:37

Does the wife really understand she is not physically able to care for the child without her friend? I think they both need to discuss and nominate a guardian (friend or family) who is known to the child who can step in and organise a nanny. However if the wife's health continues to deteriorate as well at what point does the guardian have to be responsible for the wife as well as the child. It's a huge ask of anyone.

That's the worry really. Taking on Child is a huge ask, but feels possible. Asking someone to take on long term care for Child and Wife feels too much. Wife's family the only ones who realistically might do so, but not sure how much Friend would trust them with Child - they've been very little help with Wife since she was diagnosed.

That's why I'm trying to help Friend think about options to safely keep Child with Wife, because losing two parents at once is just awful. But I'm not sure there are (m)any realistic ones.

OP posts:
Phineyj · 26/10/2023 19:57

Does the MS Society have a helpline? Surely there must be others who've been in a similar situation.

Oldermum84 · 26/10/2023 22:05

TippledPink · 26/10/2023 14:22

You can refer the adult to adult social care and she may get support to meet her childcare responsibilities- it's a domain under the care act. It can get a bit grey in this area as it is part of the care act, but also could be considered under the children's act, so both adults and children's SS may need to work together to meet the need.

This.

TheSandgroper · 27/10/2023 14:23

Throwing my hat in the ring here.

Life insurance. It needs to be enormous. Previous posters are suggesting a nanny but a nanny won’t do adult care and certainly not at the level required.

Current housing. Is it set up for disability and deterioration? Or does a move or renovation in the near future need to be planned?

Power of attorney over the three of them. Guardianship of the child. Get good advice signposted from MS charities and children’s charities because they have been been down that road.

I think your friend needs to spend a bit of time thinking about putting herself first. Helping everyone else have a good life is all well and good but she needs to look at how that gets done and the effect it will have on her. She needs to actively include herself in her planning, whether or not she gets the all clear.

sending prayers.

Reugny · 27/10/2023 14:31

@TheSandgroper once you have been diagnosed with a condition or even going for tests life insurance will be enormous, as the assurance company knows they will have to pay out. However hopefully the friend has at least a policy with their employer that pays a decent amount.

TwigTheWonderKid · 27/10/2023 15:13

I think this is something all parents should be planning for but I suspect most of us don't. We have guardians chosen for our children in the event of us both dying and hefty life insurance to ensure income is maintained and extra help could be bought in but we haven't thought about a scenario where one or both parents are still alive but unable to care for our children.

Life limiting illnesses aside, it's perfectly possible than both parents in any family could, for example be involved in a car or other accident, which could leave them with a serious disability.

TheSandgroper · 27/10/2023 15:59

@Reugny Yeah, I’m aware but in this case, I think everything should be looked at to make an informed decision.

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