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.

You’re worrying about a course of time that you can’t effect or change? You can’t stop you PIL’s getting sick or dying, you can’t look after Tom. When Tom’s (parent) carers die, you are planning to transition him into full time care - the end. You’ve been entirely honest about your plan, I’d do my research now and have everything ready for the moment it needs actioning. Which is when your DH has power of attorney.

Yes, but we are not talking about a country with no social care. We all have that same privilege in this country. We all pay for that.
You are being disingenuous to imply anything else.

You find it shocking that someone wants to have a relationship with their parents? Really???

Great post

I find it shocking that OP's PILs only seem to value their own son as a future full-time carer for his brother and not as a person in his own right. It reminds me of the plot of the book 'My Sister's Keeper' where the parents only had a second child to act as an organ donor for their disabled older child.

My heart breaks for your MIL. Her whole life will be dedicated to caring for her son and even contemplating death, her thoughts will just be totally consumed by what will happen to Tom. As a parent to a profoundly disabled child, I know the thought of what will happen to them when I am not here makes me feel physically ill and basically is all I think about what I look into the future; the grief that comes from having a disabled child includes being robbed of the opportunity to be excited for their future, because the fear overrides that.

Whilst that doesn't mean you should commit to looking after Tom, I think some empathy and kindness to her heartbreaking position wouldn't go amiss.

This story struck such a chord because it's the reality for many of us https://www.bbc.co.uk/news/articles/cvgpv228r55o

Pil wouldn't have to pay for care in this instance.

My DD receives housing benefit which doesn't cover the whole of her rent but she does receive universal credit which includes severe disability supplement plus PIP high rate. DD pays just over £400 per month towards her rent for her apartment and Adult Services cover the care package.

DD lives very comfortably on the amount she receives.

Yes. When the parents have expected him to completely dedicate his life to their wishes and told him he’ll be written out of their will.

They don’t care about him at all. He’s just someone to provide a service for them when they die.

I’d have nothing more to do with them.

Its not going to change the outcome so why cause anymore trauma to everyone involved!
MIL is not going to allow carers to do a gradual take over and DH/OP are not going to become his carers so why not let MIL hear what she needs to? I'm sure deep down she knows full well what will really happen but at least she can keep telling herself all will be ok when she dies.
its a shit situation for everyone involved esp BIL who is the innocent party in all pf this. Sometimes honesty isn't always the best policy.....

In all of this, how on earth could DH look after someone doubly incontinent and have any sort of life or career? He and Tom would be struggling on carers allowance and benefits, basically for the rest of their lives. It's not a reasonable thing to ask him to do.
As others have said, I think it's worth a gentle investigation of what facilities might be in your area for Tom in the future. OP all sympathy.

Personally as his brother, I'd be doing all I could for BiL, whatever the 'cost' to MiL.

But that's me (and I'm a similar age)

Yes but his situation is different. He HAS to put the safety of his own children first! It has been made quite clear in the OP that the BIL is triggered by children and is violent. Social Services wouldn't even entertain that he could care for them if it put minors in danger.

The day after our wedding (or the first day of our honeymoon!) MIL called up DH hysterical as Tom would never have the life we have and begged DH to give me an ultimatum to take on Tom as apparently I would if I truly loved him

Even allowing for her natural worry about BIL this isn't a rational person you're dealing with, OP, so it seems you'll just have to wait for a crisis to bring about the needed change

That may well happen if FIL dies and she's left unable to care for BIL, and as we've all said it'll certainly be a mess, but a certain amount will have been of your PIL's own making and that's really not your fault

I'm talking about MiL's head-in-the-sand approach

Absolutely the OP and her DH can't have him

The reality is that lots of disabled people do better in care and often thrive. DHs aunt improved so much when she was in supported housing, she was in her 50s and her speech came on leaps and bounds. Being and living with people like herself gave a kind of freedom she hadn’t had before.

Living with his brother and trying to fit around their needs isnt actually the best choice.

PIL are living in a fantasy world. If they really wanted Tom to be, looked after in ways that suit him, they should have factored in things like Toms brother could have an accident rendering him unable to perform any of the caring.
Who is the paid Carer of Tom?

Social services won’t step in unless anything happens to Toms parents so there’s no point raising a safeguarding concern, as there isn’t one. When Pil die, the LA will assess need and find a suitable placement for Tom.
Your PIL have been grossly unfair to your DH to even suggest, let alone expect him to become Toms carer. I say that as a parent of a disabled young adult as it’s never crossed my mind that my other children will step in.
Just concentrate on your family and don’t feel guilty. Provision will be made for Tom as and when appropriate

there is however a good chance that they would give the OP's husband advice about the situation he is in that would help him to prepare for when the inevitable happens.

unfortunately you're just going to have to let the proverbial hit the fan I'm afraid. I would however not be hiding my life intentions for fear of upsetting her ie having more children , moving house. Work wise so she can see that you're not planning for a life as a carer
its an outrageous ask regardless to honest. She doesn't sound well.

@Bumblingbee92 What a difficult situation for your dh to be in. It doesn't appear that PIL, especially MIL, are likely to change their mind on what MIL perceives is the best way to care for you BIL.

I think the best thing you can do now is as much scenario planning and discussion with your dh as possible. As a very early poster wrote,it is unlikely to be an all-or-nothing crisis (although it may), there is more likely to be gradual deterioration in PIL's heath, puctuated with minor crises / step change points. The important thing for your dh to consider is where and how he draws the boundary during this extended period of time - it could be the next 5 years.

For example, FIL has to go into hospital and your dh is pressured to help with heavy practical care for Tom 'just for a few days'. A few days in hospital can so easily turn into a few weeks, plus the need for rehabilitation and recuperation at home. So how many months does you dh end up with the care responsibility, and at what cost to his job / income / and your family? There are no easy answers to these questions but considering some hypothetical situations may help your dh to make good decisions when the time comes. e,g would he help with visits etc but refuse to do any overnights? Would he set a very firm boundary on the intimate personal care? Being absoloutely clear with SS that he would do it for 3 days and not a moment longer? The risk is the more/longer he would provide support the more MIL would be convinced that he would after all take on the full care responsibility, and the greater her disinclination to get proper support and transition for Tom.

A different situation for us (frail elderly parents). MIL 2 hours drive away, fell while dh was visiting. He ended up living there for 2 months, doing all MILs intimate personal care and looking after his Dad with dementia. Because PILs were 'not at any immediate risk' Social Services were woefully slow to do an assessment and arrange support. Eventually dh had to tell SS that he was returning to work the following week and he had no choice but to leave his parents alone, vulnerable and unsafe. Of course he wouldn't have done that, and SS knew it. But it at east expidited things. PIL were very reluctant to accept SS support but it had to happen. LA budgets are so tight and there is a lack of good residential or supported care in many places, so if SS have the slightest inkling that there is family support they may be slow to act.

It can be a game of dare with SS when a crisis hits. My poor brother fell when SS left him home alone and was found hours later in a real state. Fortunately he had a new social worker who realised he had to be in a care home. She told me on no account to pick him up from hospital. She searched hard for somewhere suitable for him but the panel at SS said no way would they pay care home fees at the level he needed. I’d get daily calls from the hospital telling me to pick him up and that he was waiting dressed and ready.

I was actually in hospital myself with pneumonia for a week during all this but this didn’t stop the pressure on me. Eventually the hospital discharge social worker found the home and forced SS hand. SS only agreed to fund it for 6 weeks originally but saw that this was the safest place for him and he got approval to stay

I have a daughter with autism and it’s likely she will need not necessarily 24/7 care, but some
kind of supported living. I have never considered her brothers to take on this role when me and my husband die.

I can’t imagine her leaving home but I know as she gets older, this is something we are going to have to look into. I would much rather have her living as independently as possible in a suitable environment, so that when we’re gone, she’s already settled and secured.

Her brothers are fab and I know they would care for her but they have their own lives to lead and her care needs are too great.

I hope your pils come to their senses.

Social services adult care need to get involved now with a plan to slowly ease the disabled brother Tom into getting used to being away from home for short periods of time.
With a plan to have him in 24/7 supervised care otherwise SS will have a crisis on their hands
It is good that your husband is willing to oversee the care but even that’s a lot to ask of him .

Because her actions are selfish, and harmful to Tom, as well as deeply hurtful to her neglected 'other' son.

your hardest part is when Social Services look to you as family to take him in - which they may well do.

I had a colleague with a lodger and SS become involved with the lodger and started to make demands on the landlord - he had to put firm boundaries in and state categorically that he was the landlord and would not be caring for the lodger I any shape - eventually SS got the message

I just tell you this story as SS may well try this type of tacts especially if one parent is still alive and that parent is MIL and she pushes along with SS for your family to take him in. For SS is would be the easier cheaper option, for your MIL it would be what she wants

make sure you are both forwarded about this and both stand firm.