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’d just leave it tbh. You’ve made your decision that you won’t be having Tom coming to live with you - and of course how on earth could you?! - the whole suggestion even is outrageous! - so you just need to let his parents continue to make decisions for him as is their right

I’d perhaps ask DH to have one last chat with his parents about it and how he really thinks getting the ball rolling now would be ideal - and then just leave them to it. All you can do

When Tom’s last parent dies his world will change massively anyway.

SS won’t do anything in advance - he is cared for now and if PIL leave everything to him he will be self funding for care.

realistically what will happen is that one of them will die first. The other will likely become increasingly frail /have time in hospital at which point it will start becoming apparent to both of them how bad the situation is.

it is likely SS will get involved before the death of the second parent - imagine if the parent left has to go into hospital due to heart attack or fall or similar - SS will get involved.

it won’t be one single massive crisis it’ll be a succession of smaller ones - the plus side is that it’ll be easier for you to stay out of.

it is very frustrating having elderly parents/in laws who refuse to face reality thought.

As sad as it is, it is in my opinion, abusive to expect a sibling to put their entire lives on hold to care for their sibling. You choose to have children which involves caring for them, siblings dont get a choice in the matter and therefore should not be expected to sacrifice their own lives to do it.

I think you just need to continue being honest and boundaried about it with your in laws. If they dont like it, that's on them. Just because they throw a tantrum it doesn't mean you have to jump to their demands.

YANBU. Your DH is not obliged to take on his brother. And you should not sacrifice having a family if that’s what you want.

The situation you describe would not meet safeguarding threshold -Tom is not currently at risk of abuse or neglect. What does need to be considered is future care planning.

Do your parents in law self fund the carers who take Tom out a couple hours at a time? If not Tom will already be on the radar of social services and should have annual reviews which are the obvious opportunities for future care planning can be discussed.

Ultimately, should your PIL pass away or be unable to care for Tom, no one can force you or your DH to take on his care. The local authority would have to assess and place him somewhere that would meet his needs. Obviously, it's better for this to be done in a planned way with family involvement, but placements can (and are) made in emergencies.

I knew a family who also wouldn’t make plans for their adult child with severe learning disabilities. His sister did take him in, but he wasn’t violent or aggressive. But he’d have been better if a plan had been made in advance.

MiL is allowed to have her views and to decide she only wants him at home. Your dh is also allow decide he won't be taking his brother on. Her judgements are to do with her and no one else so I just wouldn't be taking them on full stop. Pp has described the most likely run of events which will undoubtedly be very hard for Tom, PIL and I'm sure your dh. They do need to plan ideally but nothing you can do if they won't.

They are the ones failing their son, not you, by not putting a plan in place,

Just do nothing; any involvement will just make it harder to remove yourself from it.

She can abhor SS all she wants; she doesn’t get to make decisions for everyone else.

I was your DH in this situation. It was expected that I would take over the care of two of my siblings and I had to put in very firm boundaries. I ended up NC with my parents over it all, they eventually did make appropriate provision for both of them before they died because they were forced to. I was very straight to the point in the end and told them all I’d do was call social work when they died and they’d deal with everything because I’d be having absolutely nothing to do with the care of either sibling. I know this sounds terrible but my upbringing was horrendous due to my siblings and there was no way I was going to be responsible for them for the rest of my life. My parents and siblings took 18 years of my early life, I think 18 years was more than enough having to deal with them.

Was the plan to have no plan, so the sister had no choice but to take him?

I don't want to read and run. This is a very tricky situation and I agree with you that it is not reasonable for parents to expect siblings to take over full care of siblings in the event of the parents death.

You are right that Tom will need a huge amount of time to get used to any changes and now is really the time to do it while his parents are still able to support it. The refusal from the parents in law to see this will have a detrimental effect on Tom in the long run.

It may be that all you can do is reiterate that you cannot and will not care for Tom for the rest of his life and eventually this will get through to PIL and they will accept that they need to look at other options.

You have dc? When the parents go, there won’t be a choice because you won’t be able to take him in. Your mil is being extremely short sighted. It wouldn’t be safe from what you say to have Tom in the same house as your dc. The biggest issue, tho, is going to be your DH’s feelings of upset/inadequacy when his parents basically trained him up to take over. This is not his problem, however, so he should probably investigate possibilities for Tom to be in a home (not sure that’s the correct term) given you won’t be able to have him. You probably will need to remind your Dh that your dc wouldn’t be safe with him and it’s not his fault/problem.

I'd also argue that it's not in Tom's best interests to be cared for by you and his brother. He needs people who are trained and there around the clock.

Also agree that the MIL is not thinking straight, as if Tom cannot cope with even minor changes, suddenly moving in with the OP and his brother, is going to be a massive upheaval. Equally as much of an upheaval as going into assisted living.

Those of us who have been on the elderly parents board are well used to the guilt-tripping "don't put me in a home" spiel which is just so selfish. When it's an elderly person though this is a limited time prospect. Assuming this brother isn't massively older, the PILs seriously think it's appropriate that you devote your entire lives to his care? Unreasonable.

Maybe ask your DH to start researching homes or assisted living units for when the time comes.

We also have a son with profound autism and learning difficulties. I would never expect his brothers to take on his full time care - I did it for 32 years and it's not exaggerating to say it nearly killed me. It's hard, relentless, exhausting and lonely - no matter how much you love your child.

Our son is now in supported living in the community with round the clock support workers and he's very happy and settled there, he goes out every day to activities, takes the bus and is having a great life. His carers are wonderful. And I can finally sleep at night and not be constantly living on the edge of my nerves waiting for the next crisis or violent outburst. He is now taking meds for the first time in his life and is much calmer and less inflexible in his routines and obsessive behaviour has greatly reduced.

I would say no more unless asked and if asked I would say that you think it's in Tom's best interests to have a plan for his future. That's all you can do.

My daughter is severely autistic and is unlikely to be independent as an adult. What is going to happen when we are no longer here is one of my biggest fears, she is an only child. Your MIL doesn’t realise how lucky they are to have a sibling willing to closely oversee his care when they are gone. It is ridiculous for them to expect him to live with you. A really good supported accommodation with staff to meet his needs, structured activities and a community environment where you can visit regularly sounds like the ideal option. When you care for a disabled person they are the focus of your whole life, every decision has to be made with them in mind, this isn’t a hardship for parents, I love everything about looking after my daughter, but this shouldn’t be expected of you. I sincerely wish I had the peace of mind that my daughter had a sibling to be in her life when me and her dad aren’t around anymore.

Honestly, its your in-laws who are failing your BIL. The best way forward would be a supported change of care while his parents are alive, ignoring this is cruel.

@OnlyMabelInTheBuilding I suspect so, but he was also his mums carer. I always thought it sad, that he’d never been able to reach his full potential. As he was tied to mums apron strings. I think he’d have thrived in supported living . And maybe managed a basic job.

My parents made no plans for my brother who sounds very similar to your BIL. They said I was to look after him once they died. I said no I won’t be. It was stalemate for decades. Every plan tentatively put in place by SS was cancelled by them. First dad then mum died with no plan in place other than ‘family’ (me) I contacted SS daily for weeks when mum was dying but they did nothing

on the night mum died I was sorting out the undertaker removing her body with my brother rampaging and shouting that he was being kept awake. It was a shitshow

long story short SS tried to put in short visits to the house with brother living alone, this broke down within weeks and eventually he was found a ln amazing carehome that he loves.

don’t borrow problems from tomorrow. These things work themselves out. It’s tough to watch and frustrating and of course I would have done anything to avoid the decades of worry and fear I had about my sibling but it all worked out in the end

This is a tricky situation and is likely to cause a lot of upset for Tom if he hasn't been able to get used to having other carers around before pil pass away. It's a shame mil can't see what a detrimental effect this will have on him. It's in no one interests to refuse to plan here. I'm not sure if safeguarding would pick it up but I think I would encourage your dh to contact social care or maybe someone like Scope to see if they can offer any advice.

This is just so sad and short sighted.
A family member has a disabled child (now adult) who requires round the clock care. They made the heart breaking decision to only have one child because they knew they could never give another child the attention they deserved and more importantly they could never ask them to look after their sibling.
Changes were made and my family member is now cared for by round the clock carers in their own home and their parents can be parents again instead of caregivers. More importantly they can enjoy their old age and have the knowledge that plans are in place to minimise disruption when they do eventually die.

If they want to act in the best interest of the son I would be protecting him from the potential loss and massive change coming to him and contact social services now and ask for help. In regards to the will and the estate it would be better if everything was left in trust for family And Tom could be a potential beneficiary of that trust. Which means they would be protecting that money for him to spend on nice things To improve his everyday life, I would. I would recommend that they seek advice on this.

Your DH has explained his DB won't be living with you, and it sounds like his DP have, albeit grudgingly, accepted it. You're at an uneasy truce now. I can't understand why you're giving it this much energy. I appreciate you can see this difficult time approaching on the horizon, when DB's living arrangements have to change and your PIL are either no longer in good health or no longer with us. Surely you would respond to that by making the most of the time you have now with things relatively calm and settled? Your DMIL isn't planning to have your children abused, thats just melodramatic. She's no longer asking you to look after DB in future, and even if she were, she's just focusing on her son's needs the same as you're focusing on those of your DC.

You have no idea what it's been like for your PIL to raise their profoundly disabled son, know that they won't be able to look after him forever, and that one day he will be on his own without them. If they have chosen to forego state support and care for him themselves, that's their decision to be respected. You have no idea what you would have done in those circumstances. Your MIL is wrong to demand full time care from your DH of course, but I think you're being unfair to her. The idea of calling SS is ridiculous. Let her care for her son in peace.

This is really tough OP, I’m sorry that you and DH are in this situation. Like a PP, I would suggest that your DH contacts social care and any charities working to support adults with additional needs in your area. They might be able to steer him in terms of the steps that need to be taken when he is able to do so. If he starts to gently get some planning in place now (no need to mention this to his parents or Tom at at this stage), it might be useful in helping him to remain calmer and outline a clear plan for Tom later at what might be a difficult time for all. Best of luck.

YANBU. Your MIL is being massively unreasonable not to have sorted out provision for Tom when he reached adulthood. He could by now be happily living into a residential care setting, with regular visits from family. As it is, when his last parent dies there is going to be upheaval that he cannot be prepared for.

It has to be a hard no.
He will have to go into residential care