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.

Fair enough. 👍
You take that person home with you.

The situation is extremely complicated. You have set your boundaries, try not to think about it.
More elderly people are still providing full time care, I have seen some sad cases when the aging parents, take the life of their adult child rather than leave them behind in social care, I completely understand this. 🥹
Residential care is definitely the best place for Tom, shorter visits while they’re alive.
Do not report them to SS. Life has a way of forcing hard decisions on you, they’ll have to choose one way or another.

This EXACT thing happened to friends of mine a year ago. I won’t gloss this over - it’s been horrible. Mum died first and dad refused to put anything into place for the son, now around 50 yo. Dad died a year ago. Nothing sorted despite my friend telling her OH this was a disaster waiting to happen. Long and short of it - the brother has been living with friend and her OH (it’s the OH’s brother) for a year. Luckily friend retired but she has taken on the lion’s share of sorting everything out. Just now he has moved into supported living - it’s taken a year for the LA to find somewhere. 24/7 care - the LA won’t fund that. And the parents should not leave everything to the brother, as then he will expect to be self funded and the money will all be used on his care, and will run out quite quickly unless they are multi millionaires. My friend’s life has been all consumed for the year, all because the parents wouldn’t accept the inevitable. But, you can’t make them.

I can't see anywhere where that's what the OP wants. She wants them to prepare her BiL to be cared for by others and live elsewhere. What seems to be happening is that the MiL is deliberately refusing to plan anything so that when she can no longer care for her son, the OP and her husband will feel forced to take him on even though they have said no.

I dont agree with you. I think OP is frustrated at the lack of planning and failure of PIL to act in the best interests of Tom. OP shows empathy as she is thinking of the horrific double impact on Tom not only having to get used to PIL not being around but having to adapt to new people and surroundings, "Poor man needs months to get used to the simplest routine change" .

This is what they’ve said. Our kids may be grown up by the time we need to take on B.

They’re in the mid 70s and not in good health at all. FIL has some fairly serious health concerns and I wouldn’t be surprise if he passes in the next couple of years.

MIL isn’t particularly independent as she is and relies on FIL for the majority of BILs physical/daily care needs. Honestly looking after BIL is too much for one person. Imagine a 6ft 18-month-old who randomly decides to run off in the opposite direction.

If we decide to have no more kids, and wait for the child I’m pregnant with to go off to uni, they’d be over 90. Between them they’ve both had cancer and both rattle with medication.

BIL has never been put to bed by anyone apart from DH or FIL as apparently he doesn’t let MIL do it (DH says it just takes months to change a routine and he’s currently too used to FIL doing it).

My adult DD is exactly the same and also lives in a wonderful supported living centre and has done since she was 19 years old.

We still see her 4/5 times per week as we are only 25 minutes away and she does come home with 2 carers every few weeks for a visit but, despite us being really close, she asks to go back after 3 hours.😁. She has a better social life than we do plus she has a beautiful one bedroomed apartment within the complex.

Op, it would definitely not be in your BIL's best interests to move in with you and certainly not for either of you or your family. Your pil's are being ridiculous and they aren't even thinking about your bil but just themselves and, I suspect, what other people think. Keeping BIL at home is stopping him from living in his own world with HIS peer group and moving forward to live his own life within his capabilities. Trained staff can accomplish so much more than parents can alone.

OP I would suggest that you and your DH start looking around at what facilities there are locally. Care homes are often quite specific about what sort of needs they can manage, so research is essential. Even though you can’t put any kind of meaningful plan in place at the moment, you can arm yourselves with as many facts as possible, rather than having to do it all in a rush.

Also, if your FIL dies first, leaving your MIL on her own with her son, she may start to accept some help. You would then have information to hand about places locally that can look after him.

I don't think you're my friend (as it's her brother with profound autism, not her BIL) but I did wonder! So you're not alone in this, OP.

Has DH observed to his parents that they need to start preparing BIL for a life without them? It's not like if you were to take over all caring duties there would be a seamless transition. It'll be carnage going from his parents' to a residential setting with no preparation - and it would be carnage going from his parents' to his brother's (which I agree, should not and cannot happen). Are they aware that even what they're asking for will be awful for him?

If I was DH I would present the "the best option for Tom is to transition to residential care over the next two years" party line. He could be mean to his parents and tell them they're currently failing both their sons if he feels that would have an effect.

Is there anyone who could mediate? Ex boss of FIL? Local vicar? Social worker? Solicitor? Distant cousin?

DH had the conversation with them very early on in our relationship. We’ve got married and (nearly) had two kids in that time.

But this is part of the problem.

DH went his entire life saying he’ll be DB’s carer if anything happens to his parents.
Then he meets you and very quickly does a massive u-turn.

How did you think that conversation was going to go?

Why did DH not just focus on encouraging a carer or weekend respite?
It went from 100 to zero.

If they’re against a carer coming to help, they would obviously be against him going into FT residential care.

Once they become too old or die, DH will get power of attorney and he can do whatever he feels is best - his parents don’t even need to know.
Why give them the worry that their son is going to be mistreated in some home surrounded by strangers.

I can’t imagine telling my grandma or aging mother that as soon as you need any help I’m putting you in a care home.
I would simply wait until closer to the time and say due to me working FT and having young DCs I’ve looked into getting a carer for you and then progress onto a home.

This is a wise assessment.

I genuinely believe it shouldn’t be assumed that your husband will take on his brother, but can also see why the mum is burying her head in the sand. I have a profoundly disabled nephew and the worry keeps my sister up at night and he’s only 10 so can’t imagine in 30 odd years when her own health isn’t great. It makes me sick with anxiety even thinking of being in that situation. Saying you’re considering putting in a safeguarding comes across as a bit cruel though to be honest & your husband is right it would be unforgivable. Given the hypothetical concerns, have you considered if one of your own were needing full time care how you’d feel at the end of your own life knowing they were not going to be staying with their siblings if that’s what you’d always envisioned? Obviously your husband has the right to change his mind, but until you were together it sounds like he was willing (or let them believe he was) to take his brother on?

I completely agree.

PIL do not want DS in a home - they have been more than vocal about this.

They are not going to do any of the planning.

So you and DH need to educate yourselves on the different support in place ready for when the time comes.

I would be gently encouraging a carer to help them because once they accept some help then they’ll see how much easier life is.

As the PP said, if MIL is left on her own then this will be so much easier to encourage.

Once she has regular carers going in then you can bring up suggestions about redirect homes in case she ever needs to go to the hospital etc.

Although I understand your need for a plan, you and DH went about it completely the wrong way.

Kindly, your PILS need therapy. They need counselling. Someone to talk with them. They probably have PTSD stemming from Tom's first years, plus years of huge emotions and difficulties layered on top. They have been through so much and it sounds like they would probably never have accepted help for themselves from people qualified to help. They are trapped by their sense of duty to do the right thing for Tom and they can't see reason. Is there any way you could encourage them to seek professional help, for themselves. They need someone to give them permission to let go I think.

I was going to say ' supportive living ' as tom could start getting use this this beforehand, and become independent of mum and dad yet visit and stay over if he want too, they build up great relationships with care givers and other residents of the unit,
Op could your h have a conversation with ss and see what's available in area and explain concerns for tom in future as ideally would be great to have him already settled, might give you some peace of mind, tom could spend a few nights at accommodation just getting familiar with staff and routines there knowing he can pop back to family home

Ok I’ll bite.

This is what his parents said to DH. He had said since he was eight that he would always look after his brother. He also pointed out that at eight he thought he would make it as a professional footballer and play for England. His parents should have never expected him to give up his career and family life to look after his brother full time. His mum has said since we’ve had our own kids (we’ve got a toddler and a baby on the way) how we would feel in her position/doesn’t us having kids change our mind. DH says he loves our eldest so much there’s not a hope in hell he’d want them to give up their life, god forbid, if we had a child with severe disabilities. He wouldn’t allow it, and refuse any offer, regardless of our healthy child’s age.

PIL health is currently a ticking time-bomb. If either of them are here in 5 years neither will be healthy. DH is convinced that something will happen to FIL as he’s just not a healthy man. We’re going to have a newborn and MIL cannot provide all of BILs physical care needs. How long should DH be potentially away from our new born baby to clean BIL? A day, a week, a month, three months? As I said in my OP it takes BIL months to accept new routines. Thats not even considering how MIL will cope with FIL dying then having to find emergency carers (remember not wanting strangers in her home or wanting him sent away…)

@Uhghgand if one parent ends up alone and incapable what will they say then?

I think people do agree for a long time without really thinking of the practicalities. People in theory do want to do it. I know someone whose sister is profoundly disabled and needs 24 hour supervision. Her parents couldn’t even come to her wedding as they couldn’t leave her.
She frequently talks about how her sister will come and live with her once her mum dies (her dad died so has now some extra help). But she has 3 school age children and a job. Her parents home has locks and alarms to stop her moving around/getting out.
It’s not going to happen as it’s totally impractical.

I assume that PiL are his full time carers given what you've said? How the hell are they managing that at their age and state of health?

It's very unfair if them to expect your DH to take in Toms care without him fully choosing to enter into that arrangement.

Even if he wanted to, your DH would have to give up work to do it, surely? Are you supposed to sacrifice ever hanging children and his career for this?

They are going to have to accept reality and start planning for a realistic future. They won't be able to manage him themselves soon enough.

Unfortunately it sounds like you are just going to have to get this disaster play out. Do your PIL’s have much savings? Because even if they have money in their property surely it would have to be sold to pay for the care- and then where would Tom live?

Could you speak to a social worker to just get advice on what to do when your PIL do die? Imagine it, your PIL has been taken into hospital, what do you do? I imagine that first night your DH would stay with Tom but what about the next night, and the next. Care in the house takes a while to organise. A placement even longer. Could you even start looking into companies/placements before then just to be prepared when the day comes.

I think I'd move a distance away or tell them that you're not going to be close by as you're thinking of moving to force the issue tbh and go very LC. It has to be forced in their heads that husband isn't going to magically swoop in after their deaths.

I'm sort of in your in-laws position l, except mine will probably be able to cope in supported accomodation. He also can't stand kids which makes being a grandma tricky. I couldnt expect my son to take him on when I croak it. It's just not possible.

What if one or worse, both parents require serious care and the ‘everything’ they’re planning to leave to Tom, gets spent on care. Then what?

I agree is untenable for your DH to care for Tom but the way you manipulated him into making that decision was plain wrong. It was not your decision to make!

She manipulated him into having children, because at that point he would be unable to look after him.

Where are you getting this bollocks from?

Their money isn’t going anywhere anyway, it won’t make an impact on the cost of this care. The state will pay, whether immediately after they die or after a few months when the inheritance runs out.

Girl, what crack are you smoking?!

Similar situation with us although not with the sibling expectation.
Mum became hospitalised and some caring was increased.
When she died, SS had nothing to offer. 24/7 care assessment was done and in essence as he was able to eat regular food (with help), didn't require ventilation and had some movement 24/7 was denied. The bar is really high. After 2 months (of people moving in to take care plus carers) he was allocated an overnight carer. This enabled the rest of the family to go back to work etc.
It's been an absolute nightmare. We couldn't take my lovely brother in as my house can't be adapted for his wheelchair. We'd have to move which isn't financially possible.
I don't envy the position you're in but wanted you to know that it's not anywhere near as simple as they are expecting.
Such a sad and difficult situation.