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.

You might know better but you've said your piece so leave it.

You and DH will do as you need to when they die but you BIL is not currently at risk therefore there is nothing to refer.

Don't pour oil on the flames. MIL/FIL are stressed and grieving so give them space.

You can’t really do anything and whilst I do agree that this would be a safeguarding I think it could cause a lot of negative feelings and stress for Tom . These years will be his last years of memories of his parents.

Im sure it comes from a good place , but they are actually being unfair to him. It sounds like he is only ever with them so he is missing so many opportunities.

You absolutely can’t have him living with you , He needs full commitment and you can’t give him that - it’s unfair on him and your children. Also, going from living with his parents to living with a whole family would be so distressing for him.

I would maybe begin looking into residential care for when the time comes . I don’t work in care , but I work in education for young adults with high level needs and you I cannot stress enough the importance of picking the right provision. There are some awful ones out there! But there are also some lovely ones that will give him the care he needs and allow him to live a life where he is involved in decisions and he experiences lots of lovely, meaningful things. Chances are he will come on so much.

Good luck x

I’m deliberately writing this before I’ve read anyone else’s comment so I’m not influenced. Firstly, it is not your responsibility to look after your BIL whatever your PIL think. If you want to do it that’s fine but it must be your choice.
Secondly it is important to start to make plans now. Either do it in consultation with PIL if they will let you, or between you and DH so you know what your options are. Contact social services and ask what the possibilities are. Also contact some private care agencies to see what they can do. Draw up a schedule that includes approximations of what your BIL will be entitled to and what he will inherit from his parents. Is it possible there may be enough to buy him a small place of his own where he can be supported?. Or perhaps he can stay in his own home with outside support. I don’t know what is possible, or what you will be able to afford, but you should draw up credible plans long before they are needed. Good luck!

"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’."

Your DH is going to have to start answering her deflections. Right now, she has persuaded herself that he WILL take on Tom's care, so he has to keep reinforcing to her that he WILL NOT.

So -
‘don’t you think we do a good job' - 'Now, yeah, but you won't outlive him. So no, you're not doing a good job of giving him a future.'

'don’t you think Tom deserves the best care from us’ - 'I'm sure you think you're giving him the best care mum, but leaving his future to chance isn't anybody else's idea of best.'

‘I don’t want strangers in my house’." - They're going to be have to be here when it becomes Tom's house, so if you really loved him and not yourself, you'd be getting him used to that whilst it still is yours.'

Brutal, brutal, brutal is what he's going to have to be, to get it through to her that he is not going to take Tom's care on.

I am the MIL in this situation. Except I think your MIL is totally totally in the wrong here. I have 2 DDs. Dd2 has profound learning and physical disabilities. There is no way on god's green earth I expect DD1 to take on her care when we are gone. Pick her up for days out, have her for Xmas day etc but then take her back to wherever she will be living. I want both my girls to live their own lives. Your MIL is being shockingly selfish and short sighted.

Sadly you're just going to cross bridges when you get to them. When one of them dies and the other is struggling then carers will have to be arranged. Just put it on the back burner and try to detach, hard though that is.

They'd be much better leaving inheritance to your dh as everything will go on future care cost for his brother.

Not your job, PIL should be contacting social care and asking for a disabled adults assessment where they can assess his need for supported living.

In my experience it's better to get on their radar earlier rather than later to ensure the right provision is given as it's extremely beaureacratic and they can't guarantee appropriate placement on short notice, but I know that services vary wildly from one local authority to the next.

Honestly though this is not yours or your husbands battle to fight. It's PILs and if they're not willing to listen to your advice to make sure he is adequately supported without compromising your own lives then leave them to it.

My cousin lives in a sheltered sort of flat arrangement as his parents knew that when they go, his siblings will care about and for his welfare but couldn't have him under their roof as they have their own families, and tbh, nor would he have wanted to be most likely. He can't communicate his feelings wholly well but can express annoyance with his hectoring siblings 😂 best thing they ever did for him after failing him hugely with coddling, ignoring his additional needs til it reached a breaking point etc . His siblings actually arranged it as his parents just seemed incapable, so your DH may need to help there for the best long term outcime for you all.

Part of being a parent to a child with additional needs (including when they grow to adulthood) is making sure they're safe when you're gone, and that of course means fostering a relationship between siblings ehere they want to look out for eachother, but it doesn't mean a sibling is an unqualified carer for the other. They need to get real, and fast. Prepare him in their lifetime and not just expect others to step in.

A parent who really cared would do the hard thing which is help him get and settle into some form of residential accommodation with carers or caretakers onside, establish him there, make it his home (while still having a place for him always in the family home) and so when they do die he doesn't have a dreadful shocking upheaval of not seeing his parents anymore PLUS leaving his home. They are being very short sighted on this and have not served him well in the long term. They could find a great facility for him now and know where he will be when they die, surely that is going to make them happier when they close their eyes on this world than not knowing.

We have a similar situation in our family. A cousin in his late 20s, severely autistic, non verbal, doubly incontinent but refuses to wear anything at all, walks around naked most of the time. Huge, violent meltdowns. His parents are in poor health and its very much expected that one of us cousins will take him in. Realistically, none of us will. Its logistically impossible. But they won't hear it, just insist that 'when it comes to it, someone will have to step up.'

As a single parent I can rest easy knowing that my siblings, for all their faults, would raise my DC if anything ever happened to me.

I cannot begin to explain how much it means to me. My family is very dysfunctional and there’s a bit of concern there but they know my DC and their needs much better than a stranger.

I don’t know why your DH would even say this to his parents.

Honestly it comes across as though he met you and you basically made him choose between his brother and you.

Surely, it was not for him to change his plans but for you to decide whether you want to be in a relationship with someone who has potential caring responsibilities.

You have no idea what your situation will be when his parents can’t do it.
You may never have kids or DH isn’t in a position to do it due to health or for whatever reason. You might not even be together.

Surely you stick to the plan and when the time comes you assess the situation and if you’re unable to care for him he goes into residential care.
Theres no reason to discuss this with his parents right now.

I don’t understand the reasoning for creating a storm when things don’t need to be so dramatic.
All it’s doing is creating a divide between you and PIL.

As you say in your post virtually all the parents I know in this situation have managed the transition to supported living for their child EXACTLY so they CAN BE there for them to support them through the change. Comforting them and advocating for them in some lovely community settings.

The delay is a real worry as service provision gets tighter and tighter and commercial providers in complex cases are involved in scandals about deprivation of liberty and worse. Planning and acting early is critical…any distress that leads to violent behaviour may mean a FAR worse placement. It is really important MIL understands this and is there to speak up for her son

Give over.

You're talking like her DH has no agency in this.

If he truly wanted to dedicate his life to being a full time carer for a violent, doubly incontinent man with the emotional literacy of a toddler then he can 100% say to OP "Hey guess what I actually want to care for my brother so I don't think I am the man for you".

He hasn't though. Because he doesn't want to be put through a lifetime of servitude simply for being born a sibling to somebody with extremely complex needs.

He doesn't have to exist to altruistically devote his every waking second, which will be significantly more waking seconds than anybody who does not have to provide care to someone with complex care needs.

This is a horrible situation - you cannot possibly look after Tom. My brother is severely autistic and lives in a home under NHS care, with carers and other people with mental health issues. This has been the case for over 20 years, as my father couldn’t look after him any more.
You also need to think about the parents’ wills and other legal issues. After my father died, as per his will, a discretionary trust was set up primarily for my brother (but also covers me and my family if appropriate.). The trust pays for clothes, other needs and also a carer to take my brother out three times a week, as he can’t go out on his own. My brother also has a Deputy at the Board of Protection to deal with his financial affairs. All these things are quite complex to set up so these parents really need to be told to stop digging their heads in the sand!

you see, Tom has nothing to do with you, because you don't want to have him. End of.

Until DH met me he always thought he would take on Tom *

My concern would be that when push comes to shove DH will buckle.

I don’t think you can complain to SS about lack of planning. In this situation the best plan would be :

• to leave money in a trust so Tom’s benefits wouldn’t be affected.
• use carers so Tom got used to be cared for by someone else.
• have a range of different activities for Tom to attend so he would use to visit different places.

Also maybe sort out relevant paperwork so your DH would be able to advocate for Tom formally. It doesn’t mean they should live together. It’s for DH to have a voice in decisions.

Added: it could be that the lack of planning wasn’t questioned by SS because PIL told them that brother would have Tom but it’s rather that your PIL refused to discuss this issue and nothing SS could do about it.

As the mum of a disabled lad myself I feel for you, OP, the difference being that DS is already sorted with his own home and carers because I don't have any other family to do it even if I wanted them to

The worst aspect of your PIL's lack of plans is that BIL faces a major upheaval to his living arrangements at a time of crisis rather than it being properly planned, and that's what I'd emphasise to them, even pointing out the truth that someone who truly cared for him would sort this out

If they go ballistic and still won't listen there's not much more you can do. You've made your (very reasonable) decision and the cards will have to fall as they may

I don't blame you one bit - and think your IL are being short sighted.

I only know one perosn in this situation - they grew up with the expecation but got pg at 16 and were chucked out - parents sort of got back in touch years later after the Dp and father to two kids died after some truely tough years for her. They had in meantime started with provision and their eldest was actually more capable than expected - I think it was done though as there was no other choice.

It's not clear if you have kids yet - if not it may all seem theoretical to them and that you will both come round with pressure.

I don't think you'll get far with them at minute as I think it fear that frozen them - and I do think they should be making plans now you may have to pick up the peices when time comes or they may very slowly have to come round.

Very sad situation, but all parents of SN children know all they can rightly expect of the siblings is that they will keep an eye on their brother or sister and maybe have Power of Attorney. Elderly parents should get their son placed now so he has time to adjust. It is also pointless leaving money to him because it will be eaten up in care and then he will revert to benefits. But as others have said Social Services won’t intervene until they have to do so.

I think this is more a safeguarding situation than anything else and no, you can't take a cousin on in this situation. Utterly reprehensible that the poor lad is being left to suffer without appropriate support.

Look at Shared Lives in your area. It would be perfect for him. Shared lives nationally have really good videos on line about the services. Respite could be a good 'taster' into it long term for BIL.

I've unfortunately worked with many people who came into Shared lives following crisis of a family bereavement and it would have been so much better if it had been a planned move.

Nooooo way is this a fair situation to any of you.
Very selfish of your husbands parents to expect you both to do as they're doing.
They have done Tom no favours in there care of him only made the situation very difficult.
Stick to your decision and draw the line in the sand.
They need to start looking at residential care for Tom and putting everything in place for him and for all of you .
They're basically controlling what your future is going to look like .. they can't make these decisions it's beyond unfair x

It was always his opinion that he’d take on his brother.

Obviously when it came to it he may have decided otherwise.

But I think OP is very shortsighted if she thinks he may not change his mind the other way.

There is a reason he is not in FT residential care already, even with the challenges you list.
It is incredibly difficult putting a family member in FT care and especially if something tragic happens to DH’s parents he’s going to have even more guilt.

It is much better to wait and see and not give his parents unnecessary worry and create a massive divide (and now no inheritance) beteeen the family.

And it's really shit being the voice of reason when the entire rest of the family involved take no notice whatsoever. We have a situation in our family, well, a couple that if they were managed properly would be a lot less stressful for everyone involved. It just sucks.

This certainly sounds like OP’s MIL’s plan too!

And yes, your MIL is failing Tom by refusing to plan appropriately. He is not your DH’s responsibility. Parents of disabled kids who limit their other children’s lives, making it all about the disabled kid, are abusive and neglectful. DH deserves a life of his own.