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.

Rather than the guilt of what he is going to go through when he's suddenly among strangers?

i have an autistic and globally delayed son. We recently did our wills and the solicitor who did them advised us to make a will where my son would inherit in trust, because if he inherits everything outright he will loose any potential benefits and financial assistance. If it’s in trust he would still beable to access these services. Your MIL will make Toms life so much harder if she doesn’t do this.

This. They need to wake up and smell the coffee as it’s not the Tom show. Numerous other adults and 2 children can’t run their lives around 1 other person it’s just not reasonable. Why should OP have to go placate and lie to the parents? The honeymoon hysterical phone call was especially manipulative and out of order, they clearly give very little thought to OP’s husband. He’s just like staff to them and is just an extension of Tom in the parents eyes. Poor guy needs some professional support and counselling

OP already has children and it is a reason why they can't care for Tom full time as he doesn't cope well with children. They are putting their children first as they should.

Based on experience I think you should raise a concern.

This very thing keeps me awake at night. My children are young but what will happen to the care of my son when I’m gone? I’m going to have to carefully research options, I don’t expect my daughter to care for him but I do expect she will visit him frequently and give him the feeling that there is someone in the world who loves him. It would be so much easier if services were invested in and there was a guarantee that placements had the standard of care for an enriched life.

I can totally understand and agree with your stance, but your MILs greatest fear is this, she has advocated and fought her whole life and by the sounds of it helped others and charities, I can tell you the fear is very real and the thought of my son in a facility that treats him without humanity and cruelty is something that can be part of my thought process. She is entrenched in fear, try to see her perspective and persevere on getting your husband to get her to see through kindness that sorting out care now and getting him used to a other place even if it’s just a day a week will help him so much. Heart goes out to you all

I know a lady who has an adult with autism. They could never live obviously their own and will always need 24/7 care. There is a sibling a few yrs older.
The lady and partner split from her husband when their youngest was 3 (diagnosed at 2) and she has brought both of them up as a single parent but with lots of family and some amazing friends.
She made the decision when the child was about 7 that the sibling would not be taking that responsibility on if anything happened to her. She has been looking at supported living places for a few yrs and is beginning to use a respite care so their child does not have that sudden shock when everything in their world is turned upside down.

I do get as a parent you want to be doing everything so you know its getting done, and im sure they think theyte doing the best for him but really its a disservice, can uou imagine the pain/confusion for his autistic brother simply because they refuse to face it now but the mess/organisation that will need to be dealt with once one/both of his parents go, will be immense.

I dont think uou can force them to do anything but I think id ask DH to try once more, pointing out the distress this will cause his brother!
Its an awful situation for his family to be in, but there can't be an expectation that DH will simply take over.

On the elderly parents board, it is a frequent complaint that as we (general we) age, we don’t plan for old age. Yes there’s lots of talk about pensions but not the practicalities of how we want our twilight years to be when our health starts fading. And any attempts at discussion with our parents, e.g. whether it’s time to consider downsizing from the family home with large garden to a manageable property are just met with hand waving and “I’ll manage somehow”. And that’s without adding in a profoundly disabled child with intensive needs.

in that context I would say your PIL are already failing your BIL as lots of pp have already agreed that he needs to start getting used to external cares and routine changes. Also a lot of the assumptions on here are that one or other of your PIL will just drop dead one day, when the odds are that they will either gradually decline, or have a major health event like heart attack or stroke, survive but need care themselves. There is no way the other PIL would manage caring for both. I would also add that another consideration is that professional carers, especially in a residential home setting, have training, experience and adapted equipment can mean the care is of a much better quality. I’ve seen this myself with DM in her care home.

It is awfully like watching a car crash in very slow motion but you do have to wait for a crisis to force a change. All you and your DH can do now is agree on what you can do for your BIL and your boundaries, and do some reading into what the options are so when it does happen you have some idea of what options are available and you aren’t scrambling around at a very stressful time.

“Always his opinion”

Yeah, an over-parented glass child who never got to experience a carefree typical childhood of their own. He probably assumed the status quo and went along with his parents wishes, having never been the one considered and being used to the dynamics revolving around his brother.

Then he grew up and realised he was actually allowed a life of his own, a family and a loving partner of his own- something he never would have expected had he sacrificed his life for his brother. The man wouldn’t have children of his own had he decided to take on the care of his brother ffs, that’s a hell of a sacrifice to make.

As a parent, you should never, ever, expect this of your adult child. They deserve the freedom of their own life and choices, otherwise you are sacrificing one for the sake of the other.

To be frank, once your in-laws are both gone they won't know what happens to Tom. So don't give any thought to their expectations. Don't stress about them. Let them rant. You are absolutely right to refuse to have him, but at the end of the day they'll never know if you do or not.

It seems like you'll be ok @Bumblingbee92, just keel saying no. No. That won't be happening.

I am appalled at the roasting the OP is getting from some posters here. At 8 years old her DH promised to look after his brother - unless his parents sat him down and explained that it would be 100% 24/7 and meant he could not have a life of his own then it is so unfair to hold him to it now.

Some posters are saying that, despite growing up and having a job, any relationships/marriage should 100% involve the future care of Tom. The hysterical phone call on the first day of honeymoon proves this. Somehow the OP is a wicked woman who took over her DH sense of duty and coerced him into being an uncaring beast! Never mind that he had made a committment to another person (gasp!) and had the ordacity to have children that could trigger Tom's meltdowns!
Take a breath - 'caring' for someone does not mean being with them all the time! Being their guardian and mentor is caring; finding suitable housing is caring; letting someone grow in a new environment is caring.
Reminds me of an elderly lady who, when she saw my DM had daughters asked "which one is going to stay home and look after you?" Mum said neither, they have their own lives to live.
My darling Mum was disabled.

But this isn't the case for the OP and her husband, thankfully..

OP - neither you nor your husband are unreasonable. I think you know that, but it can't be said too often. Your husband has made the correct decision in my opinion, but don't underestimate the toll it will take on him to go through with it when his parents die. He will be dealing with all kinds of loss and be incredibly vulnerable.

I would suggest that, if at all possible, he gets some therapy now to start dealing with some of this conflict. It's a huge burden and must be causing him a lot of inner turmoil.

Having said that, although it's obvious your parents in law are behaving irrationally and quite badly, don't underestimate the sheer blinding panic that is going through their minds, particularly your mother-in-law's mind, preventing rational thought and behaviour.

You don't have to give into it, and nor should you, but until you have lived with this as a parent, it's really difficult to understand. Your mind freezes and you start displaying some really rigid thinking and behaviours and huge denial of reality in order to control the terror at the thought of leaving your vulnerable child in a bad situation once you've gone.

Stick to your guns, support your husband both now and when his parents have gone, and maybe get him to have a chat with them and make it clear that although he can't provide a home for his brother, he will always look out for him and make sure he's okay. That's what his parents really need to hear right now, even if they push back and say it's not enough. They're going to feel as though it's their job to keep arguing and make sure they get the most possible security for their disabled son.

But if your husband keeps repeating that statement with great kindness and compassion, they will gradually come to accept it.

I wish all of you the very best in dealing with this hugely difficult situation.

I know someone who works in adult social care. He once commented a lot of his clients came to them after their parents have died. They’ll be in their 40s/ 50s and never regularly attended day centre (compounded by as their parents get older, they’re less likely to take them out and about) or exposed to a lot of external carers. It’s a big change for them to loose their last parent, move out of the house and have a new way of living.

You and your husband have made your stance clear and I agree with you that your in laws need to start thinking about Tom’s care after them.

I was the sibling in this situation. Both parents had died by the time I reached my early twenties, with no provisions made for a family member who is autistic and could sometimes be violent.

At the time, social services offered very little support. From their perspective, we had inherited a house and I was living there, so the situation was not considered a priority. In reality, it was an extremely stressful and unsafe period. Eventually, following a serious incident of violence, my family member was sectioned. Professionals involved advised me that, for my own safety, I should refuse to have them return home. Making that decision was heartbreaking, but necessary.

This was happening while I was trying to train for my own profession and was already at rock bottom emotionally and practically. Only after refusing to have them return did social services step in properly and help secure suitable assisted living with 24-hour care, about half an hour from my home. Family member was in temporary accommodation for 18 months before this placement was found.

I also had to obtain deputyship for finances. I paid a solicitor over £2,000 to handle this because I simply did not have the capacity to do it myself at the time, and it is something I must manage and report on every year.

Inheritance is a major issue in these situations. For someone who requires lifelong care, money can quickly become a problem rather than a safeguard. Costs run into thousands per month just for accommodation before care is even considered, funds disappear rapidly, and then benefits applications become unavoidable. In many cases, inheritance should be placed in trust or avoided altogether.

Now, my family member is much happier and far less violent. I am convinced the earlier outbursts were strongly linked to an unstable environment and chaotic home life. With routine, consistency, and appropriate support, they are far more settled.

I am now in a long-term relationship and established in a professional career. I visit my family member twice a week and speak to them multiple times a day. I manage all finances, pay bills, send daily spending money, handle benefits, annual care reviews and deal with accommodation contracts and care providers. While carers are present, they cannot advocate in the same way a family member can, in my opinion.

I still do not feel that starting a family of my own is sustainable, though I hope that may change in the future. From lived experience, it is essential that proper provisions are made early for anyone who will need lifelong care- not just for them, but for the siblings who are left to carry the responsibility.

Not read full thread or any experience in this matter. But would say MIL needs some sort of a 'shock' to change her mentality. Her ideas are totally at odds with both her DC's well being. A short sharp shock to make her change her ways is required. She does not sound that ''all together'' herself - maybe point that out to her. Tell her she's bonkers etc
She needs counselling.
Would she read books on the subject - or could she be ''shamed'' on social media - or even ask her to take part in TV prog (real or not) on the subject for all the world to see - to change her attitude? You tell her you've been approached about this idea and/or will go Daily Mail? Any sort of ''shock'' might help.

I think there needs to be a tabled meeting to discuss. It is selfish to expect you and your husband to take on his brother. Yes he is family but your husband is not his responsibility, however much he loves him. MIL will not live forever. Tom needs the opportunity of transitioning to something like supported living and MIL needs to help with that transition and whilst this won't be easy or quick, MIL will get peace of mind knowing he is settled. Emphasise how hard it would be for Tom if he doesn't have Mum to support.

Get a court of protection deputyship in place asap.

SS are not the enemy and this scenario is common and I see it play out regularly in my work.

You’re coming across as thinking you want the right thing for him, more than the parents who have scarf over over 40 years of the lives for him.
Please stay out of it. The couple in their 70s with health issues don’t need the extra stress/worry about their son’s care when they’re gone.
DH can look into the best way to arrange for care for Tom when his parents are gone and start putting things in place to be triggered when the time comes.

Lying to them when they're ill and very frail about what has happened to their son is so much worse than being clear about his plans now. The OP's husband has to live with what he has done; once they died he would carry and likely be damaged by this lie. He's given them time to think about what their plan B is going to look like and he's promised to be a guardian to him. If he'd lied to them you'd (rightly) have a pile on here saying "how could you have lied about what would happen to their son?"

Agree

I find it shocking that your husband wants to have a relationship with people who think so little of him.

It might come to a head quicker OP as, by the sounds of it if one parent dies sooner, the other won’t manage Tom on their own. I am not sure if it’s possible to do this or not, but can your DH start researching what will happen once the last parent dies? Can he get some initial advice from a solicitor and may be touch base with social services just so you do have a rough plan in mind for when the inevitable happens?

I agree with the poster earlier who said try once more with the parents. You do want the best for Tom but that your won children must come first. That doesn’t mean you don’t care and love Tom but that he cannot be with you in your home with young children.

It's actually just sheer manipulation and actually child abuse (by modern standards) to make an 8 year child promise to care for their disabled sibling for their whole life and to try and hold that person to their "promise" as an adult. MIL sounds very highly manipulative and has no regard or care for OP's husband at all. The honeymoon phone call was diabolical. She sounds like someone who should have sought help a long time ago, but still has zero insight, even now. I hope your H is able to see that her expectations are completely unreasonable, @Bumblingbee92 . There has been quite a lot of defence of MIL on this thread. She's clearly a very difficult and single-minded personality.

PIL aren't going to die on the same day. Whichever is left with BIL, grieving their spouse, will expect DH to take BIL/move in to help/whatever they expect in the moment. It would be more unkind to spring it on the remaining parent in that moment that they won't be taking in BIL! Much better to clarify expectations early.