Caring/mil aibu

[rocky4321]

I wasn’t sure where to post this, but it really boils down to MIL being what I think is unreasonable and due to it not being my family drama I don’t want to share his private matters for support in RL.

DP has a sibling ‘Sam’ with severe additional needs; non verbal, needs complete supervision 24/7, help with all personal care, has a history of violence, zero sense of danger, dislikes any change of routine etc. my DP loves his sibling unconditionally and will always take care of them but doesn’t feel he has the capacity to take on 24/7 hour care once his parents aren’t able to without completely jeopardising any form of his life now I.E. quitting his career as he wouldn’t be able to work from home with Sam in the house, myself and the kids would have to learn self defence just how his family did, we couldn’t live where we do live etc.

I feel for MIL as her life is absorbed being Sam’s carer (she’s sacrificed her life for Sam and I respect how she does it on a daily basis) and it must be frightening to think that one day she won’t be there for Sam. DP has always ‘known’ he’d be expected to look after Sam once MIL was gone and was never really given the choice if he wanted to or not.

to cut a long story short DP has told his mum that he cannot commit to being Sam’s sole carer but will always support Sam as much as he can to make sure they’re always looked after and has a good life, just not full time in our home. DP has also told MIL that we’re hoping to try for a baby in the near future and with Sam having their own needs (firstly Sam cannot be around noise/kids crying/playing etc) that us having Sam 24/7 isn’t viable choice and as a family they should start thinking of a plan.

MIL has had this news for a month now and is still throwing insults at DP (he’s a disgrace of a son to turn his back on his family, why bother bringing a child into this world when he doesn’t care about his own blood, how self centred he is etc etc).

This weekend MIL has seemed to change tactics from pure guilt into me, DP and Sam to spend more time together. She’s completely refusing to engage in any conversation of coming up with a plan ‘b’ as between throwing insults (which is still constant) is how plan ‘a’ can work. Suggestions on how plan a can work are ‘It’s modern for men to stay at home therefore OP can just work..’ or ‘maybe you’re not ready to be parents if you cannot take care of someone with SN’ or ‘maybe OP will fall in love with Sam and won’t want Sam to be abandoned’ or ‘babies aren’t babies for ever and Sam might not need to move in for 20 years’.

DP has shed so many tears to me and MIL regarding this decision but at no point has she tried to empathise with DP ‘you can think of your own happiness but I’ve got to think of Sam…’

While I wouldn’t put more stress onto DP my patience for her is wearing thin and I’m loosing all respect for her for not considering DP or our family’s needs/happiness at all (let alone the horrendous things she has said for the past month). Luckily I’ve not seen her for the past month but I can imagine her saying something to me and I’ll just struggle to keep my mouth closed. AIBU?

This is so true. Our son is in his 20’s and for years we’ve not been able to do anything or go anywhere. Everything we have done has been separately so someone is always with our son. Respite is non existent in our area. We actually had the funding agreed for 40 nights per year but there wasn’t anywhere. School holidays we don’t leave the house at all. The other ids have missed out in so much. There is no way I’d want my younger children to have that responsibility and I want my son to have a full life with lots of activities which can only be be provided in a residential setting. There is too much stigma around care homes and the phrase “putting them in a home” really grates on me! There are some awful ones I know but there are also some amazing places! I’ve recently visited a place in Essex and it’s absolutely beautiful, has amazing grounds and a huge sensory room. It’s like a 4* star hotel!

Thank you all for your replies. Surely this must be somewhat of a common issue but there seems to be no other threads anywhere on the internet.

DP is more focused/stressed on how his mum isn't giving two hoots what DP thinks on the matter/at breaking point (DP knows she's narcissistic).

MIL is in her own world that her and FIL managed therefore we could if we weren't self-centred. Maybe DP just needs to give me an ultimatum that if I love DP I should love Sam too.

I'm stressed as there's a lot of finger pointing but no actual coming up with a plan. If FIl drops dead tomorrow our lives are over. MIL won't just accept DP doing the weekly shop and giving her say a day respite, she'll want us over there every other day and that still won't be enough. What happens when MIL does actually die (she might need care herself beforehand) as we can't just tell Sam to pack up his things and ring up social..

I am your mother in law in this situation. I am absolutely worried sick regarding what will happen when I die . I’m torn between not wanting my son to be in care without family and not wanting his siblings to take him in as I know the effect it has had on my life . The local provision is horrible/ non existent. We were “awarded” respite money but there’s no where . We can’t even get carers at the moment, the job adverts go unfilled . He goes to groups etc but at the end of the day needs a home to come to . We try so hard. People say make financial provision for the future, have you any idea what that costs , you’d need to leave millions ! And that’s nothing to do with the emotional side of it. I worry about this every single day, the older I get the worse it is . I just don’t know what to do . One thing I haven’t done is pressure his siblings but the pain is immense.
Ive looked for adult special needs advice on Mumsnet but it all seems to be for parents of younger children.
Im stuck between a rock and a hard place . It’s awful.
To be honest I can see both sides of op’s situation, it’s where I am . I’m so sad .

OP yanbu

Neither is your husband. His mother needs to have these conversations, difficult as they are. If she keeps being spiteful and rude then I would completely disengage for a little bit. Both of your as a couple completely disengage when she starts the nastiness.

Your dh clearly loves sam but he is not his father and you as a couple deserve your own life without being pressured into lifelong 24/7 care for sam.

I'd suggest researching care homes close by, find nice ones, suggest sam goes to respite more often. Find positives but stay firm.

MIL won't just accept DP doing the weekly shop and giving her say a day respite, she'll want us over there every other day and that still won't be enough

Once again what she wants and what you're prepared to do don't have to be the same thing, and while the situation's obviously very stressful, caring for MIL would be just as voluntary as caring for Sam

What happens when MIL does actually die (she might need care herself beforehand) as we can't just tell Sam to pack up his things and ring up social

What happens is that you ring the Adult Social Services emergency number and telll them there's a very vulnerable person without care
As ever, if you're prepared to do it you'll get no help whatsoever from them, which is exactly why it's so important to insist you can't

All that said, the issue of it becoming a crisis is precisely why it all needs sorting out and dicussing properly before an emergency arises. Clearly this would also be much better for Sam than having him flounder in a situation where he's just lost his main care giver, aand quite apart from the offence MIL's causing it misht also be thought deeply irresponsible of her not to consider this

I actually feel angry at you MIL. The best thing for Sam would have been a move to a good quality residential care as a young adult. This would give him security and stability when his parents die. As it is there will be a massive changes with no safe transition or period of adjustment. Likely very little choice either. Its cruel.

Agree with others above.
He needs to acclimatize to supported living whilst his main carer is alive and able to visit and help with settling in.
How much harder will it be for Sam if he stays at home until MIL suddenly dies, and he not only has to get used to the loss of his main supporter, but also has to move house and be with new people at the same time as he is getting used to her not being around.
Really cruel. She will die one day, should she not prepare for this?

The best thing she could do for Sam is work to get him settled and as independent as he can be, in some sort of supported living away from her before anything happens to her or FIL....you will always be part of his life and will support him but it's not down to you to be carers.

How you get her to see this I don't know, some parents sadly never get to that point.

I can absolutely empathise, and am in a very similar situation. It is an on going, never ending pain with little hope of a happy ending for my precious child.

The supported residential care in my area is awful - place is a total mess, drugs are sold on the premises, residents are self harming etc. No one in their right mind would house a loved one there given half a choice.

It breaks me utterly to think that that is where my DC will end up. Good quality care for adults with LD or ASD is almost non-existent.

My brother is ND, and I absolutely expect that he will live with me at some point. I am his family.

Hi all,

Thank you for all your support last year. Gave me lots to think about/help me support DP.

We’re actually expecting! MIL is still the same; vile, narcissistic, spitting insults at DP and lots has happened since I last posted. I won’t go into detail but MIL behaviour with other matters, not just us not willing to take on Sam 24/7, has meant I’ve gone NC with her/FIL. PIL have put a lot more pressure onto DP’s other NT sibling to take on the care of Sam but they realise as Sam is such hard work there needs to be at least two Carer’s to tag team, therefore BIL won’t be able to do it by himself (he’s currently single, horrendous mental health and struggles to look after himself) and DP is a bad person for leaving it all for BIL.

MIL raised last week how she’s still upset that DP won’t care for Sam for full time. DP suggested that they all set up a meeting to discuss what’s the plan for Sam which was immediately shot down as ‘everything will be left to Sam and hopefully the council will pay for 24/7 hour care as you refuse to do it’. DP asked if the council would pay for 24/7 hour care and MIL said she didn’t know. Mil said she had thought about buying Sam a one bedroom flat and getting in carers but what’s the point when he could
potentially have an extra ten years of having a good life living with PIL. PIL are both in their mid 70s and not particularly in great health.

oh, and there was a comment thrown in that MIL should have gambled and had another child to share Sam’s care - that’s her take away from this whole shitshow that she should have gambled on having more kids to share looking after Sam.

DP really struggled with all this pressure/treated like dirt from MIL but is doing a lot better mentally now. Fortunately he’s gone from being hurt from all the abuse to seeing that this is a ticking time bomb. Is MIL plan viable at all? I doubt they’ve got massive cash reserves apart from their modest three bed house so they’d be relying on the state to fund 24/7 hour care.

It sounds like Sam is known to the local authority even if they aren't actively involved?

I would be advising DP to say to his DM that he will only enter into discussions about caring for Sam after Sam has had an up to date Care Act assessment and an idea from the local authority about what the options are funding wise.

it is vastly unlikely that the local authority will agree to 1:1 24 hour care for Sam, if they leave Sam the house he will be entitled to live in it but the local authority do not have to fund the care for him to remain living there if there are other options available like supported living.

If Sam doesn't remain in the property because he moves into a suitable care environment but becomes the straightforward owner of the house after his parents' death then the council can force a sale of the house via the courts to fund his care before the council start to contribute anything towards the cost. An average house would probably fund 1-2 years of care 1:1 24 hour care.

The house could of course be left in trust for Sam so the council can't sell it to pay for his care, but that still doesn't force the council to cough up the funds to pay for a 24/7 care package to make it possible for him to live there.

They may suggest that if Sam wants to continue living there with a support team that other people with similar needs could move in with him and be supported together.... could that be a suggestion that MIL may consider, with the NT siblings being the landlords and financial deputies for Sam?

Congratulations on your pregnancy!

It sounds like you have made progress with MIL, as painful as it has been.

You sound very sensible.

Congratulations on your pregnancy!

Keeping well clear of PIL seems a wise move for now. There’s no point subjecting yourselves to the vitriol.

Either MIL will accept the reality of needed an alternate provision of Sam eventually, or she’ll keep estranging family members until she’s shouting into a void. You can’t affect what she does, you can only remove yourselves from her firing line.

Congratulations.

I met with an ex colleague recently. He has a cousin who has many needs, his aunt had asked him to take him on when she died. He had to say no, he has a full time job and teenage children.
He has however pushed for him to be an a home near to where they live and visits him and takes him out for walks with the dog. He said he’s actually very settled and happy and he sees that living with him would have been a massive disaster.

I’ve seen this in DHs house this desire to pass the parcel with someone to avoid going into care, when they were actually better off in care in the end.

Congratulations on your pregnancy!!
Being NC will make for a far less stressful experience
Your DP is doing a great job with boundaries re mil. I suspect it's really really tough for him as that's his mum saying such horrible things.

All the best!! Xx

Sticking to my old thread as here we are three years later and zero progress… apart from FIL’s health is declining (more age related/not having the best lifestyle than something drastic).

MIL did get her local MP involved as she’s made a complaint against Sam’s care plan potentially being reviewed (he currently gets funding for a mobility car/his care isn’t means tested but that could be changing). The only plan the in-laws have put in place is getting the house redecorated/general house maintenance ‘to ensure it’s ok for when it’s just Sam..’

FIL did have a potential serious health scare this year and was sent to A&E by his doctor. What MIL got from it was how uncaring they were in A&E to not fast track FIL as he told them he would have to leave as he had to put Sam to bed (MIL apparently can’t put Sam to bed and they’ve never had a carer do his bedtime routine either…) For good measure MIL called DH hysterically as she expected that DH would at least help out in an emergency…

I’m still NC with my in-laws but I’m tempted to pop up to essentially demand that they sort a sustainable future-proof plan as this is just getting ridiculous. I did suggest to DH for him to call social himself to raise a safeguarding concern/our concerns but he says that’s unforgivable for family.

When the time comes DH is going to find it extremely traumatic to essentially dump Sam onto social because his parents haven’t left us with an option. He knows himself he doesn’t have any other option but it’s going to be traumatic for everyone involved (apart from PIL as they’ll be dead!)

"DP isn't going to be Sam's carer, MIL, and neither am I. We're telling you now so you can plan ahead." And leave it at that. If she shouts or whatever, tell her you'll see her again when she's calmer and end the visit / call. Make it clear that if all the inheritance has to go to Sam to pay for residential care, that's fine by DP. Don't get drawn into arguments; this isn't a discussion. Don't respond to insults etc, just repeat you're not going to be carers. She doesn't have to like it, but if you're firm and consistent she will eventually understand that you mean it. Might take a while though.

When the time comes, it's quite likely that the PIL won't actually be dead - they'll just be old and frail and unable to cope with Sam and perhaps needing care themselves, and piling on the pressure for DH to do it all. One day you maybe will have to make that call about safeguarding concerns etc. Sorry to be negative, but if the PIL refuse to acknowledge that they can't do this forever and that you and DH aren't going to do it for them, this has the potential to turn into a real shit show.

Sorry to read that this situation does not seem to be coming to a sensible resolution. It looks like PIL are afraid and burying their heads in the sand. Disappointing, but not unusual. My own elderly parents will not have calm sensible discussions about important matters either, and I am giving up on getting anywhere and resigning myself to having to sort out what they would not do when alive upon their passing.

If you have not aleady, in your and DH's position I would try to make myself as informed as possible regarding options for the various scenarios (PIL needing care, triggering need for care for SAM, one PIL passing away triggering need for more care, both PIL dying triggering care need for SAM etc). I would document the proceedures and orgs/contact numbers in an easily accessible file, and be ready to use the info when the inevitable happens. I would be tempted to pay for for some independent legal advice with a specialist firm to find out exactly what the Local Authority has to provide in these scenarios, and how to ensure that you are not cornered into providing care which is not tenable. This would help me feel calmer about it all, and not pressured into making poor, unconsidered decisions when crisis hits.
It is a real shame that MIL is still being so short-sighted. I have an child with ASD myself, and though his needs sound a lot less profound than Sam's, we are very careful in planning and facilitating all major transitions. If PIL can be persuaded that gentle transition into supported living whilst they are alive is the kindest thing to do, it would be best for all in the long run. I guess that if that were easy it would already have been achieved though. There is a real possibility that you will need to raise the alarm regarding safeguarding though, even though DH does not want to do this. Again, I would find out what the proceedure is so that you can do the right thing in an emergency - otherwise you need to be happy with taking over care, which does not sound viable.
Wishing you the best of luck with this situation going forward & hoping that you can continue to support your DH with the inevitable difficulties yet to come.

I'm sorry this is still going on OP. I suspect that it won't get resolved until it reaches an emergency situation - that your FIL dies and your MIL is caring alone and can't cope, that your MIL isn't coping as she becomes older, or that your MIL is no longer able to be at home (eg hospital admission, care home, death). It's rubbish for you, and your husband, and Sam especially, but it sounds like your MIL is very entrenched in her views and that's not going to change. I think all you can do is, as you have been doing, take a step back and just keep an eye on things. If circumstances change or you're worried about the care Sam is getting then you need to contact the adult safeguarding team. I've seen similar situations play out with older people caring for spouses, and it's only when things become past unstainable and reach crisis point, that things change.

I guess I’m becoming angry/frustrated at PIL for ‘digging their heads’ in the sand. They don’t have that kind of luxury as surely they realise that it’s guaranteed they will die relatively soon and Sam will be left up shit creek without a paddle.

Really good advice from PP about us writing our own handbook for when the time comes. DH did ask MIL to put together one for us for who to contact to get this 24/7 hour care in the house started etc. Apparently it can’t be sorted out until they die 🙄

I’ll suggest that maybe we start looking around/researching residential options and what the process is. But, something like that would take months to transition Sam into. Poor lad has never stayed away from family before.