Struggling to look MIL in the eye

[Bumblingbee92]

I used to think ‘not my business, staying well out of it’ but MIL is expecting us to take over therefore it is our/my business.

My DH has a brother with profound special needs and autism. He will always require 24/7 care and in some ways he’s mental capacity/needs are similar to a young toddler.

However, he’s 6ft tall, can be violent during his meltdowns and can be easily triggered/have to stick to his routines by to the minute.

Until DH met me he always thought he would take on Tom* but looking back, he was never really given the choice, but it was expected of him. DH had a different kind of childhood because of Tom (definitely the glass child/seen as another pair of hands to help with Tom) but he doesn’t hold it against his parents/he does genuinely love Tom.

When we met and got serious I asked DH how would it logistically work with caring for Tom and us having a family. It was the first time DH had ever really thought how it would work for him and his future family and decided that it wouldn’t be feasible/fair on our future kids/me at all. One of Tom’s triggers are children, if we were to hypothetically have Tom, it wouldn’t be in his best interests let alone our kids interest either.

DH sat his parents down and told them that he wouldn’t be prepared to be Tom’s full time carer. He would always ensure that Tom was well cared for but not in our home 24/7. All hell broke loose, PIL were disgusting to DH for months ‘for turning his back on his family’ etc and since it’s been the elephant in the room. If DH has tried to raise planning for Tom’s future he’ll get a comment like ‘we’ll just have to live forever’.

PIL are in their 70s and not in great health. I very much doubt both will still be here in 5 years especially as FIL health seems to be massively declining. MIL isn’t clueless, she’s on the board of a couple of panels/charities/runs special need support groups. She sees social services as evil and basically cuts off anyone who ‘sends their kid away’ - DH grew up surrounded by lots of other families in a similar boat, Tom is the only one to remain at home and MIL has fallen out with all of their parents.

MIL has made comments on how they’re going to leave everything to Tom (we’re fine with that) and that we’ll have to sort out getting 24/7 hour carers once they die. When DH has mentioned potentially getting Tom used to either staying away from home/having carers for longer than a couple of hours (they usually take him out) she deflects of ‘don’t you think we do a good job/don’t you think Tom deserves the best care from us’ and ‘I don’t want strangers in my house’.

I’m pretty low contact with MIL for various reasons but I can’t help but get more and more frustrated/annoyed/angry that her lack of planning is going to negatively impact my family. At the beginning she begged me to change DH mind/has said that she hopes that I’ll fall in love with Tom and refuse to send him away. I know that’s her plan, to do nothing and when it comes to her dying, in that moment we won’t make the emergency call to social to completely uproot BIL from everything he knows - poor man needs months to get used to the simplest routine change. Changing his complete world in an hour will be horrific for everyone involved. Our lives would be turned upside down if we did decided to take on Tom as we wouldn’t both be able to work/do ‘normal’ things as a family (no spontaneous plans, play dates, visit child centric places) and also, how would we guarantee/safeguard our kids from physical harm…

I said to DH that I’m tempted to put in a safeguarding concern to social to put this ridiculous car crash on their radar (I’ve got a feeling she’s telling everyone that we’re having Tom) but DH said that would be unforgivable. I feel like I’m becoming so frustrated/angry with MIL that I cannot be in the same room as her/don’t particularly want her around my kids when she’s happily setting them up to be abused.

I was replying to the person before saying she manipulated him.

I meant to say ‘ so she manipulated him into having children?
blame the dog

But what parent in their right mind would ask that of a child?
Don't move from your hometown
Don't marry
Don't have children
Don't have dogs
Presumably limit your career
Live a life solely in preparation to be your brother's carer

Sorry but that is mad, unfair and actually quite a cruel request. It's not so much a case of changing your mind, as of recognizing that what was expected of a young child is unfair and unrealistic, and does not need to upheld

Did she?! Did she manipulate him into getting married as well?! Both of these are a massive stretch and lm not getting the vibe about either! He’s allowed to have his own life. His function isn’t to be his brothers carer/future carer, he is a person in his own right 🙄

This also happened around the time DH decided to move away from his hometown. His parents always made it clear that he had to stay in the nearby area/within the borough for funding purposes.

I honestly can’t understand how you and DH thought this was going to go down well.

The parents had a plan set in their head and very soon after meeting you DH moved away and decided he wasn’t going to become DBs carer - something which he’d always promised to do and which the parents were relying on.

FWIW I think you’re both very sensible but it’s the way you’ve gone about it which is obviously going to have caused massive issues.

If DB already has carers then I would have just pushed for more of this or encouraged respite in case DH is unwell or whatever.

And the inheritance wouldn’t have been an issue as DH could have given half to his DB/paid for his care.

I personally wouldn’t tell my grandma or mum that I’m planning to put them in a home. I wouldn’t want to worry them but I’ll 100% do it without any regrets.
But I would say to them that I will always make sure they’re cared for.

DH doesn’t know how he’s going to feel when his parents die and so although I sort of understand wanting to be upfront, what they don’t know won’t hurt them.
They are not going to give DB up until they literally cannot cope and when that time came DH could have lied and said he’s looking after him or he’s gone to a home whilst DH sorts the house out etc.

I just don’t see the point in stressing out 2 parents who must be sick with worry everyday that they’re going to get ill and die and their son is going to end up God knows where with strangers who mistreat him.

DH doesn’t need to care for his brother but if it was me I would want to ease my parents worry by letting them know that I’ll make sure he’s being taken care of.

These parents have manipulated and bullied their own child into agreeing to be a carer for his brother. They just expected this giving no regard for how he’d manage to have a relationship, a career, children of his own.

It’s completely unreasonable.

They’re the ones at fault here not the OP and not her husband.

If I was the OP I’d be wondering at the start of a relationship what this would mean for me and our family. I wouldn’t be marrying and planning to have children with someone who had made that commitment.

It’s been put on their radar. When one of his parents passes away it’s likely you’ll get a vetter response when they are struggling

I completely agree that it’s unfair, it’s very selfish to expect their other son to put his life on hold he never asked to have a sibling but that is their personality.

They’d rather struggle by themselves than accept help.

As PPs have said, it’s likely that they’re from a generation where care homes for autistic people were awful and they’re worried he’s going to be abused and mistreated.

I'm coming from a slightly different perspective, I am the parent of a young person like your BIL, my dc is now in a Residential Placement following a crisis. Looking back, I can't believe we survived it.

I think it is extremely unfair on your DH to be expected to put his life on hold to care for him or for your BIL to have to potentially have a massive, traumatic change in circumstances. As an aside, if they are leaving everything to your BIL, I hope they are putting the money into trust.

@Bumblingbee92 Jesus these people are next level controlling!! Not “allowed” to have a dog, not allowed to have children, not allowed to move house! Would you even be allowed to live with your own husband or would you just handover 75% of your salary and live elsewhere popping over to be a carer / housekeeper to your husband and Tom?

In all honesty, the pimple will burst as soon as one of his parents is less able. At that stage Tom's care will need to be supported either with carers coming to your PILs or him in a nursing home if he is incapable of self care.

Your, DPs mum and dad are OOO thinking your DP should sacrifice his life to look after his brother when there are care facilities better able to look after him.

I would speak to SS and let them know the plan. Then I'd stop worrying about it. You know what you've decided and that's it.

I don't know if this is of any help. I have a disabled child. He will be sorted well before we pop off and we plan to choose his placement and see him settled before we loose capacity and choice. He will be funded by socail care as has no assets of his own. I think this is a safer bet than self funding as funds would diminish fast and then we would have to uproot him to somewhere of socail cares choice.

But he is already under children with disabilities socail care. Therefore it's being talked about now and he is 13. By the time he is 18 we will have a plan ready for adult SC. I have already discussed this and been reassured there is no rush for SC to move him at 18. So I hope he can have a normal young adult life and move out mid twenties. I was worrying out this since the day he was diagnosed at 3. Parents Burying their head in the sand is dangerous I think.

It's a terrifying prospect, and I can understand why they are ignoring it. But Tom ultimately will suffer. I would never, ever, ever expect my kids be disabled sons carer. Never. He is their brother. His sibling and that is what he always will be. Never a dependant or his carer. Anyway the best way they can support him is not from a position of duty but from love.

I do have a good friend who had a non verbal global development delay daughter who then had a NT younger sibling and always said she wanted second daughter to look after the first / she is full time carer for her child along will full time husband carer eg two adults at all times look after her.

I can remember saying when youngest was about 8 what do you want to do when you are older and she said - I will have to be Emma’s carer which broke my heart for her. Now her family have seen this will not be right for either of them. Younger sister could not marry and have children and care for an older non verbal sister who needs 2 carers all day that isn’t fair. She is now at sixth form and planning a future.

You have made it clear it isn’t happening.

Hi OP. I care for DH with dementia. The life of a carer is really, really tough. It consumes everything and lives have to be planned around care. DH like your BIL is sometimes violent and I would not be doing this for anyone other than my spouse. Denial when someone needs care is quite normal. It will not help though. Your PIL need to start planning now. I am going to be harsh and say your DH was groomed to take on the care for his brother. He is fully entitled to change his mind and has rightfully in my view done so.

I agree. When the time comes, it's not about what MIL or anyone wants - no-one WANTS any part of this unhappy situation - it's about what "Tom" NEEDS. And what he will need is a team of people in place to make sure that he is safe, cared for, and secure. This cannot be on @Bumblingbee92's DH's shoulders.

Tom cannot help the way he is - but @Bumblingbee92 and her DH and children cannot and should not be compelled to take on the mantle of PIL's choices. They would suffer, Tom would suffer, and their children would certainly suffer.

Stand firm @Bumblingbee92 - I'm sorry you have to deal with this. Your DH is lucky to have you. Best wishes to you. x

YANBU and I'm saying this as a parent/carer of 2 young adults with additional need's. They can't surely expect you to have him living in the same house as your DC.

A parent/carer was telling me about a man in similar circumstances. They kept him at home until they were in their 70s. His mum had cancer so dad needed to care for her and didn't want the stress of caring for him as well. So he went to live in a care home which of course was a big change for him. He had a huge outburst care home rang police, police used a taser on him. They did calm him down eventually but care home decided they couldn't deal with him. Ended up in 1 of those assesment hospitals that has had a lot of controversy.

I agree with you. his childhood probably revolved around Tom and his needs. kids are not brought into the world to replace parents. I could understand if it’s a death of a parent of a young child and no one else available I know people who have done this. But also this kid would grow up and become independent but to expect you to give up your life for a sibling is selfish and as you say cruel.

Your CH may find support from a charity called Sibs, which is for the adult siblings of disabled people. I understand this situation is not very unusual, so there may be some good ideas for how to go forward.

I don’t think your husband needs to say anything any more. Just grey rock. It’s clear your MIL will never change her mind, so there’s no point in upsetting her.

By the time your husband has to make decisions, his parents may not be here or aware any more.

If you do say anything, you should encourage them to have another carer to take over personal care. Say it’s so he can stay with his parents as long as possible. He will need to get used to this no matter what.

I really do feel for you and your DH.
You will always get mixed opinions on a thread like this.
I think it is selfish of your PIL to honestly expect you and your DH to ever give up your lives to take care of BIL when they finally are no longer able. You would have absolutely no life and or money. Both of you would need to give up work and live hand to mouth. Your marriage would but under such strain it probably wouldn't last. All this without even considering your own children's safety and wellbeing.
Its a tragedy that his B is like this and im sure your PIL understand the reality of the future that lies ahead of your BIL when they're gone. They must feel very desperate to start using bribery tactics.
If I was in your position, I would just tell them that you and DH will do all that you can to ensure BIL is loved and safe when they are no longer able to care for him. Let them interpret that in any which way that they want at the point in time and hopefully they will find some comfort in that.
Put yourself in their shoes. I would feel absolutely distraught knowing that when I died my disabled child would no longer be cared for by myself and the reality being by strangers. I would probably do everything I could to try and convince family members to help even though I knew that it was unfair to put them in such an awful position.
You and your DH deserve to live your own lives without the burden of guilt from PIl. Just be kind to them though and say what your MIL so desperately needs to hear so her mind is at peace.

Hi op I would ask your dh to write everything down for his dm to read. all the cons of tom being left bereft and why his mum is being really selfish by not putting something in place now to help Tom with the transition from them to someone new. Dh mum is just hoping that your dh will just suck it up at the time. Op but she’s not thinking of her gc so the only person she is feels is important to her is Tom which I get as he’s basically her child. She needs to realise that with Tom being aggressive he needs specialist staff to care for him with your dh being responsible for any life decisions. Dh needs to make it clear if she doesn’t put anything in place for Tom she is the one letting him down at the worst time of his life. After taking such good care of him while she is alive she is going to ruin his life by being selfish and the only person who will suffer is Tom. Good luck you really are going to need it.

She is showing empathy

She know that she and her husband won't be able to care for him and that residential is the best option and she really wants to make it as easy as possible for Tom.

His parents doing ostrich impersonations are the ones being awful.

Umm no it wasn’t his “stance” willingly, he was forced into a child carer role by his parents and didn’t realise he had a choice until he saw the prospect of having his own family! You can’t put that on OP just by her asking him what would happen if they had kids. She was not unreasonable to worry about that.

The PIL are in a massively awful situation and did their best, but they did not treat the OP’s DH at all well. And he should not feel like he has to take over the same level of care in his family home. You don’t have children just for them to be carers to you or other family members, end of.

But they wouldn't be strangers if he was gradually introduced to them and going for respite now

Ideally a trust. Your DH could be one of the trustees who could advise what’s best for his brother, it’s what we have set up for our son with SEN. Wouldn’t expect anyone to take on the responsibility. look these up and pass on details and then it’s their own stubbornness for them to address.

In-laws are putting their child first. You and DH need to make clear that you are / will be doing the same and you can’t / won’t have Tim in your house as you can’t put your children at risk or impact their life like that.

So they can ignore it now and cause immense stress to Tom when they die or they can plan accordingly to support him to cope. But it’s their choice on what to do because they know your position. The call to social services will be made when they die.