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.

My poor brother fell when SS left him home alone and was found hours later in a real state

to avoid this, you'd need to put cameras/nanny cams in each room

Then complain to SS,

My NDN has nanny cams in the house, his son rings him or me if something appears to be wrong.

What a tough situation. I feel for all involved.

My eldest sounds similar to your bil. Mentally she is a toddler, she can have very aggressive meltdowns. But she is also a funny, loving, inquisitive girl.
I also have a younger daughter.
I would never expect for my youngest to have to take her big sister in one day. She has made comments before about how when she has her own house she’ll always have a bedroom for her, but she’s 10. I’m sure her way of thinking will change.

When the time comes that myself & my husband are no longer here, I want my youngest to make decisions for her sister etc, but by that point she will have been in assisted living for many years. So it will just be the decision making, basically she will take over the deputy ship. We will have the relevant paperwork in place well before it is needed.
Do I want her to be living away from us? No. But I know that deep down it’s in the best interest of everybody.

Sadly for your bil his parents have their head in the sand. So when the inevitable does happen it will be harder for your bil & your husband to get things into place.

If your in laws were the sensible type they would be organising a care facility now.
As you have said that he can have 24/7 care now is the time to implement this.
Your ils are not doing their so any favours.

Tom is an adult and deserves people to advocate for him that have his best interests in mind which the MIL doesn't. The parents don't have rights over him or in the situation.

I thInk you are right to alert SS, and you need to convince DH of this. MIL is being hideously selfish, not just about you but BIL. When they inevitably die, he will not only have to cope with massive upheaval, but also simultaneously awful grief at their loss. It would be so much better to get him settled somewhere while they're still alive.

Taking on a person with complex needs is a massive decision. No doubt about it but it will totally turn your lives upside down. Does he get respite, does he go to a day centre? Could you cope if he goes into a bad behavioural melt down?...The list goes on. It is a massive decision to make. If the right place is found sometimes it can be the best place for him. He will be with people specially trained, he could possibly live in a house in the community, where everything is catered around his needs. I know it's controversial but could you agree to the in-laws that you will look after him, but when the time comes look at care, they will never know but saves all the hassle you are getting now. I know you are doing the right thing refusing, you have to put your own family first

Yes she really is putting her head in the sand but I expect that shes conditioned after devoting her whole life to her son. What an awful situation to be in and I'm guessing she feels very desperate atm.

It is also highly likely that your PILs will not simply die, but will decline gradually with an occasional crisis thrown in. I say this from personal experience - out of my parents and inlaws, only one of them died without warning. The remaining three have needed significant support themselves at various points and were unable to look after themselves, never mind care for an incontinent and violent adult.

Please make sure you aren't used as temporary respite care for Tom if this happens and pull the virtual alarm to involve social services at the earliest opportunity, being very clear that you will not take him in under any circumstances.

This was a hard read. I have an 8 year old DS who sounds exactly like your BIL, only he's not (at the moment) aggressive. It breaks my heart. I agree that you and your husband couldn't/shouldn't take on his care at this, or any stage, of your life. I know your PIL are being unreasonable and are not thinking of either of their children in these circumstances, but try and have a little more compassion for them. I can tell you from experience that they are inching closer to their biggest fear and worst nightmare. Nothing brings my husband or I to tears quicker than thinking about our sons future and the fears we have for him when we are no longer here to care for him. Luckily for our DS, he is the middle child of 5, so he will have lots of advocates when we are no longer able. I have to be honest, I secretly hope that one of my other DC will take him in, and I have also joked to my husband that whoever does can everything we own. I know that IABU!

As a parent to severely disabled 18 month old - has daily seizures, is blind, tube fed, won’t ever sit unaided/walk/talk etc myself and my husband have already discussed this. We have three older children and like hell would we expect any of them to take on the caring role if something happened to us. I want my children to live their lives the way they want to, and I am disgusted at your PIL for putting this pressure and guilt trip on your DH and yourself.

You are absolutely right not to say you will take on Tom. This is such a painful and difficult situation and unfortunately your ILs are making the whole thing worse by refusing to face up to reality. When people simply won't cooperate all you can do is wait until the crisis hits.

I think you should leave every discussion to your DH, and that he just has to keep reinforcing the message and make it clear that he is more than happy for you to help organise care for Tom, but that his future will not be living with you. Hopefully they will eventually realise that you do mean it and will start to behave sensibly, but it may take some time before that happens.

Your MIL trying to guilt trip you into taking on this massive burden is quite wrong, and is not at all the best thing for Tom either.

Quoting you so that you see this hopefully. First of all they shouldn’t leave the money to Tom because social services will just take it as payment for care. They should look at how other families make these sorts of arrangements - a trust for example.

The commitment to caring for Tom that your PIL made your husband give was unreasonable especially for a child. The guilt and pressure he feels must be enormous. I think he would benefit from some therapy to help him with the pressure his parents have put him under.

I say this as someone who grew up with a severely autistic sibling who is now in full time residential care. That was as a result of my mum not being able to cope anymore, and it was the right thing for all of us. Even when I was small I was never made to feel like I had to devote my life to looking after my sibling. I was always encouraged to tread my own path. I am sorry that your husband was not granted this. That isn’t fair. He deserves his own life.

Tom sounds like he needs residential care already tbh. Also just because he is non verbal and has other disabilities doesn’t mean that he is like a toddler. He may well benefit from being around other younger autistic people in a residential setting and enjoy having “flatmates”. Breaking routine and transitions are hard but it doesn’t mean they are impossible. My sibling is very happy where they live and it is their home.

I think you need to honestly ask yourself if you feel that Tom is currently being looked after well enough. If the answer is no, then yes I would consider speaking to social services.

It’s a shame that your MIL has alienated other autism families because her choices have been different to theirs. It’s never an easy decision but often it is the right one for everyone.

You must not feel guilty and neither should your husband. Speaking from experience, looking after someone with complex needs who has big meltdowns and is not easily physically manageable is something that professionals are far better equipped to do.

Ok, so I'm your MIL in my situation; I have a severely autistic, non verbal, non continent 7 year old who is prone to violent meltdowns, although at the minute will mostly hurt himself rather than us although he does throw things so can be dangerous and it's usually out of nowhere.

I also have a 4 year old who is neurotypical and is just starting to understand his brother is different to his friends and his friends' siblings. My DH and I have already discussed the future and we will not put our youngest son in the position that he is expected to put his life on hold or sacrifice a full life to care for his brother. It's just not fair. On either of them. Obviously we can't plan anything as who knows what the future holds for our oldest, but I just feel so sad that your PILs can't see that they are holding both your DH and his brother back by doing this.

I have no advice other than to continue to support your DH and perhaps encourage another sensible discussion with him and his family. X

What a dreadfully difficult situation.
Obviously, it’s a huge ask and assumption from your in-laws that you’ll both take on Tom. That just isn’t feasible.
I think DH should keep pushing the point of view that it’s in Tom’s best interest to seek alternatives now while the in-laws are still capable, instead of waiting for something to happen to one or both of them and then being on the back foot.
It just isn’t really an option for Tom to live with you guys though. I know he’s your husband’s brother but he’s not your child.
What a difficult situation.

Exactly what I was going to say. So I won't repeat it.

Such a difficult situation, for everyone.

Maybe you should get DSW to make a needs assessment
you can do this anonymously
there needs to be a plan in place for every eventuality also who is the appointee?

They need to realise that if they don’t choose his care, then you will be doing so, and surely it’s in all of their interests and peace of mind for them to have chosen it. If they continue to bury their heads, I would just make sure I had a plan in case anything happened to them both and who to call etc for care.

She's no longer asking OP and her husband to care for DB, but she's obviously hoping she can guilt trip them into changing their mind. She tried cutting them out of the inheritance, that didn't work. Now she's making passive aggressive comments about needing to "live forever" and refusing to make any alternative arrangements for DB's care. I agree this isn't abusing him, and calling the social is a step too far, but it's quite selfish not to get him used to new people and environments now. It'll only hit harder when he has to do it later, on top of the shock of losing them. It sounds like MIL has her head in the sand, and is refusing to acknowledge the reality of his future.

I have a lot of sympathy for the stress MIL must be under, but a lot of it does sound self-inflicted, and the way she treated OP and DH sounds awful, frankly. I can well understand OP's frustration with her.

Thing is, she is fully aware of the option available which do not rely on a sibling and which ensure a slow transition to residential care/supported living. The OP says that her MIL has long been involved with disability groups, and other families in similar situations. But all those other families have acted to ensure their disabled child's living arrangements well in advance, and as they have done so, the MIL has cut them off!

She is fully aware of what she is doing. No doubt many other parents with disabled children have spoken to her about this over the years, but she wants to do things her way, and to hell with the OP's DH, and Tom himself who is going to be seriously traumatised when a crisis forces a change for him.

Mil can plan all she wants but only what affects her. She has no right to to expect your husband to take over her son at the expense of his own future family. If I was you I’d find it hard not to point out how utterly self centred she is and ask her if she’s ever given any thought on the negative impact her choices have had on your husband. She sounds insufferable

A very close relative was put in the difficult position of having to care for an autistic sibling with significant learning disabilities despite the fact they were medically unwell themselves and eventually died quite young. It destroyed their marriage and any chance of a life and travel they wanted to do. I was left in the awful position of having to put this person into local authority care after the relative died. I don’t envy your husband and the decisions he will have to make. I can say that the relative is better off where they are as they are supported in a safe environment by people who understand their needs. I would also say that your PIL behaviour is disgusting, it is not for you and your DH to give up your life and any desire for a family to take on their responsibilities after death. They need to make provision for the brother now and start the transition. They are being incredibly selfish. I won’t say more because it could be outing to me but I fully understand the emotion around having an autistic child and worrying about what will happen to them when I’m no longer here. So I do speak from a place of lived experience.

Tom sounds like my brother. My parents management of the situation can’t have been more different though. They involved social services from a young age, for help, respite and support. There were some stormy years and as a teenager he went to live with a foster carer but we continued to see him regularly of course, but that day to day trauma was removed. Time spent with him could be doing things like going for a walk which was good for him and my parents. Then he was assisted to get a place at a residential home and a work placement for people with similar needs when he was an adult, and it’s been great. My mum sees him every two weeks now - carers bring him and they go for a walk, have lunch, write in his journal (he likes doing that) then he goes home. He also has a holiday with carers once a year which he loves.

eventually the management of his care will be one my responsibility but only insofar as liaising with his carers, and arranging his holidays. And I will continue the fortnightly walks. My mum had the foresight to know that he needed help to have the best life he could, and that wasn’t something she could provide. I was never made to feel like his carer, ever. I feel for your husband - his parents are burying their heads in the sand big time,

@Bumblingbee92
Haven’t read the full thread so not sure if this has come up but it might be a good idea for PIL to consider leaving BIL his inheritance as a trust.
I have a disabled child and this is what we have been strongly advised to do. (Different country though.)

www.nelsonslaw.co.uk/will-trusts/

I am the mum to a son with autism and a learning disability. My older son has always said he will look after his younger brother when they’re older as he sees it as his job. It’s lovely to hear. However he’s only 13 so is quite naive to how life will be as an adult. I don’t know yet if my child with Sen will be able to live independently-atm I think not and I’ve always said he will live with me until he has to-wants to, but I’ll eventually die and there is no one else but my older son. I obviously would love my older boy to always take care of his younger brother but it’s not his responsibility. I’ve never expected him to step in and take him on. It’s a very big responsibility.

I would stay out of it, don't get involved. You've made a joint decision with your partner not to take bil in, no need for u to get involved with and pil discussions or contact ss.
Your dh should make his parents aware they are setting Tom up fof misery when they are gone and it's their own doing if they don't get I'm used to other people coming into the home. Once that's relayed to them both of u step back and leave it at that. There's nothing u can do if they don't listen.

I will say i can understand the pil being fearful of Tom future but they aren't helping.