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.

Her DH is fully entitled to have changed his plans and decided to have a life that doesn't involve caring for his brother.

I think the OP and her DH already have children too so there is no plan to stick to. It would wholly unsuitable for Tom to live with them and much better if plans were made before her PILs die.

Someone I know has moved abroad to avoid taking on care for a sibling! It was a drastic solution but it forced their parents to make plans for the future.

You seriously think that OP's husband shoould have no life except in service to his parents and brother? A slave, in effect? Bred for the purpose of meeting another's needs and not his own?

Give your head a wobble! And while you're there I suggest you check with your "very dysfunctional" family that they know you expect them to care for your children after your death/disablement.

You haven't said how old Tom is, but most parents (with some exceptions) place a child with those sort of special needs, in a residential home, when they reach adulthood.
It is easier when the person such as Tom is a child, and attends maybe a special school, but an adult can be bigger than you, and its just not feasible.
Make it clear overtime it's mentioned that you won't be able to look after Tom.
What they should be doing is sorting out a home now, when they have done choice
Have sone respite care etc.
This way Tom gets used to the Care Home on a gradual basis

"It was always his opinion that he’d take on his brother." Well, yes. If he'd been always been raised with the expectation of being a carer for his brother, then of course he would think that.

It's not strange that he'd reconsider that as he went out into the world and realised there are other options, such as having a family with the OP.

Exactly. Guilt, fear and obligation easily explain why he thought he had to do it. It doesn't mean he wants to.

Also it's blatantly untrue that siblings always know "what's best" for a sibling with severe SEND. Professionals are far more likely to know how to care from a positive behavioural support perspective (PBS)

OP I don’t blame you at all but you are absolutely benefitting from the privilege of someone who a) didn’t grow up with a disabled sibling and b) doesn’t love the disabled sibling.

there is no plan. There never is. It’s a shit situation and it’ll happen when it happens. Don’t insult them by pretending they can plan and prepare. Just leave it.

you’re out and you got your DH out- take it as a “win” and keep your nose out now

I’d be tempted to bait and switch. Tell them you’d like his power of attorney switched now, so you can start planning for the future, then you can start to speak to the relevant people about a proper plan once your parents aren’t able to care for him. Is he violent with them too?

Of course there can be a plan.

Putting no plan in is a form of control; hoping that when the time comes, he’ll have to give in and take him.

Bumblingbee92;
My parents had married because I was on the way
Then about 2 years later brother was born
Deaf with no speech it was later found out that German measles were to blame
But anyway
I got the blame
If I didn't exist
Then brother wouldn't have been born
Because they'd never had got together
Went onto have 2 other useless spoilt sisters
Treated so because they were 'normal'
And brothers spoiling of made theirs look mediocre
Left home after getting job
And have never looked back
But,
When I first got job was asked if I would take on brother if anything were to happen as I was the first to get work
I said no
Saw him as an obstacle to my well being
Last time I saw them was at mother's funeral
As father next day escaped abroad
Dumping the 3 of them completely
You don't owe anyone anything
Put yourself first
And simply walk away from this
You and your husband both
Good luck

Hard no that this is OP's fault in any way.
Her DH is perfectly entitled to want to marry and have a family of his own. Becoming a carer for his sibling, who cannot cope with children and requires 24/7 care, would prevent DH from having a life of his own. He is not selfish for choosing a life for himself, especially after having his entire childhood sacrificed to his brother's needs.

Letting his parents know that residential care and/or full time carers will be required when they can no longer care for their severe special needs child was the right thing to do. Rather than berating DH and OP over it, they should be making plans for said child.

There can be a plan from Toms parents.

Op can’t make one and her DH can’t nag and argue his parents into making one

There is no control- they’ll be dead. OPs husband could leave him in a homeless shelter for all they’ll know. DH is really the one who holds the power.

Nagging them into introducing him into other people etc is pointless.

They need to sort out a trust for Tom because any inheritance can affect any benefits that Tom receives. Check out the Mencap website for details.

To be fair, the PILs are not centering their son at all. It's profoundly selfish to make no plans at all, in the certain knowledge that this will cause untold distress and suffering to him when they're gone. They could have settled him in suitable residential care and visited him regularly for as long as they are able to. It would have been very much more manageable for him. You've done the right thing OP. I'm sorry they're being such a nightmare.

strictly speaking he shouldn’t have power of attorney. He’s never been competent enough to grant it.

although my SIL is in exactly this situation and their social worker literally said- do the POA forms anyway no one will check. The person in question is 57 and has never had POA in place as they have been disabled since they were a baby, they never had any competence.

I agree op that your MIL needs to start making plans for Tom's future, but I also have a huge amount of compassion for her.
As a parent of a child with Additional Needs, it is beyond terrifying to think about what will happen to him when me and his Dad are gone. When he isn't living with people who live home, but those who are paid to look after him. It's absolutely heartbreaking. Perhaps reassuring her that you will always look after and advocate for Tom (wherever he ends up living) will in some way ease that fear.

I know of one case where social services decided it was perfectly fine to leave a learning disabled adult and his mother with dementia to care for each other.

It ended up a terrible mess.

Dear OP you are not responsible for any of the fall out of your MIL’s plan. I use plan in the loosest way possible. Her plan is emotional coercion through crisis.
You stop this by clear refusal as well as documented boundaries, formally with your solicitor, plus insisting on professional planning from your parents now. They put nothing into this, Tom will be the one to suffer in the aftermath of their demise.

You are not wrong. You are being realistic.

Agreed. Nothing will happen in advance and no introducing to other people plan will be effective

plus most importantly Toms parents aren’t going to do anything anyway

FFS why do parents expect their kids to look after their other kids.

This is a bit reachy but something your husband might like to consider. Social Services won't act as things are now, but your husband might think about phoning them for advice given that his brother's current carers are older and you have indicated that they are not in good health. If he (your BiL) is receiving any kind of medical support, or ever has, or is receiving maybe NHS continence supplies, he may be on the radar somewhere.

But do your DC have severe learning disabilities and violent tendencies? If not, this isn’t even remotely similar. If yes, and you still think your siblings should look after your children, then you are extremely selfish.

You make a decision to have children and you take a chance that you may end up with a child who continues to need care into adulthood. It is completely selfish to expect another sibling to devote their life to their sibling in the event of your death.
I actually know a family in a similar situation. Fortunately the parents are adamant that they aren’t going to expect their ‘well’ child to give up their life to care for her seriously SEN brother. They are making provisions for him for when the time comes. That’s parenting.

MIL had a disabled sibling and was obsessed with the idea she would be put into a mental institution. She was eventually put into a supported care home and was extremely happy there, after MIL had tried to push her onto everyone she could think of including us, (not herself though).

My friends aunt asked him to take her son with LD when she died. He said no, but that he would advocate for him and see him regularly. He had 2 school aged children and a FT job, as does his wife, there’s no way he could even afford to take it on. He now lives a few minutes walk from his house and he goes out with him regularly and keeps his affairs in order.

Often it’s not even the best place for them to be. Often they are much happier in supported housing where activities and support is designed for them. DHs aunt loved it after decades of sitting at home.

This is such a complex situation op .
As the parent of a high care child the thought of them being cared for by a service is heartbreaking BUT I do understand that it's not feasible or fair to expect my other children to take on the massive responsibility of my high care child when I'm gone ,,all I hope is that they ensure that their siblings is cared well cared for and they advocate for their needs to be met and don't just leave them at the mercy of "the system'"
Try to have a bit of empathy for MIL and imagine it.was one of your children.
All you and DH can do is remain firm that BIL being with you is impossible and unsafe for numerous reasons but keep reinforcing that BIL will remain part of your family and making sure he has the best care will always be a priority for you both .

Thanks all. We have a toddler and another baby on the way, sorry if it wasn’t clear on my OP.

we’ve both done a bit of research into how much 24/7 home care would potentially cost and £100,000 seems to be on the cheap side. PIL aren’t secret millionaires and BIL is 40. I think the comments regarding leaving everything to BIL is to tempting us to have him with us. The money from the estate would be swallowed up within a few years and then it would be a case of falling back on to social care.

They do get funding for overnight carers but they’ve never used it.

I honestly 100% believe that MIL is hoping that we’ll end up taking on Tom. I remember her making comments that she was hoping me becoming a mum would make me have more nurturing instincts and get me to change my mind on Tom.

I guess my concern is that good residential care is hard to come by, not the kind of thing we call up on a Monday morning and we can move him in on a Tuesday afternoon. This kind of thing will take months (minimum) to transition him into residential care without causing undue stress/having to be restrained.

DH knows we’ll have to call the emergency social services number, and as he says the blood will be on their hands, not ours. As I said in my OP, it’s not going to be nice for anyone involved (apart from PIL as they’ll probably be dead).