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 am 100% with you OP. I have been on the sharp end of caring for someone and it’s very, very hard. Of course your DH wouldn’t have known what he was agreeing to when he was a kid/teenager. I think you have to prepare a bit by identifying some suitable places for his brother, working out rough costs etc but I wouldn’t go as far as SS. When you PIL do go it will be a shock for your BIL but I don’t think you can avoid that. The difficulty could come if one PIL dies, the other is left to care for BIL but cannot.

I'm not diminishing anyone's feelings here but I will say it sounds like DH is saying all the right things to you but isn't actually willing to take any concrete steps.

Being wishy washy and deciding certain actions would be unforgiveable is all well and good, but what's his alternative?

I understand your frustration with PIL is building but they must be terrified. My youngest is ND (not to this extent) and I'll admit I've been guilty of thinking "well, at least he'll never be alone because he has his siblings". I've never outright said they need to take care of him and I never would, but as his mother I can't help praying that they'd want to, so he doesn't end up alone when we're gone.

It might be time to have a stern talking to with DH. If the only way BIL will survive their demise is by putting things into place now so he can get used to it, then DH is either going to have to insist his parents do it or go with your plan of involving social services.

What's the alternative, realistically?

Honestly though, I sympathise with everyone involved.

SS won't talk to the OP's partner about his brothers care because he is not the carer. They may be prepared to give general advice but they cannot act or do anything. First question they will ask is "do you have permission to get involved" and when the answer is no, that will end that conversation. He can "insist" all he likes but if his parents refuse, that also ends the conversation.
Do you get any support for you in caring for your ND child? because it sounds like you don't understand how Social Services work.

Something else to be aware of is the inheritance issue. Is Tom competent enough to inherit? We have a daughter with very complex needs who needs round the clock care. We had a solicitor draw up a trust agreement with trustees who will manage the inheritance and care when we pass away. We were advised by a specialist solicitor that our daughter would not be deemed competent enough to inherit so the estate would be intestate and take months to years to sort out. Could a trust be set up with DH as a trustee so he can then manage the estate and care for Tom after PIL pass away? We have other family members as trustees but have been clear they are responsible for sorting out and overseeing her care and are not expected to care for her themselves…

I understood from OP that she wanted them to make a report of concern about BIL, perhaps I misunderstood.

No, I don't know how social services work where OP is because she hasn't said. In my country, you can contact adult social services if you're worried about a vulnerable adult.

I'm not sure why you would assume that having a ND child means I would automatically have experience with SS. We've never needed their involvement.

I have a Tom….but a dd, with complex needs and autism. I also have another dd who is brilliant with her sister. They are both young adults.

There’s no way I would expect dd1 to care for dd2, dd1 knows who to contact if anything happens to me, she knows the social workers contact details and she knows to ask other family members for help until a supported living placement is found for dd2. Hopefully this plan won’t be needed because dd2 will be going into supported living in the next couple of years.

I know some parents never feel ready to move their child/adult child onto supported living but it is sooooo much easier to do so whilst you are still alive and able to transition them slowly. They then learn not to just rely on their parents for care, it makes it easier for them when you pass away. No sibling should be expected to step up and look after their brother/sister.

Not to derail EndOfYear but how 'easily' did you manage to arrange this and which sort of channels did you start off by going down? We are in a similar situation (albeit with a teenager - he'll need experienced care and support his whole life) and I also would never want my older son to have to shoulder the care, though inevitably I think he'll need to make decisions when we're gone, in behalf of his brother (I assume - I'm not good at looking that far forward).

OP and her DH are in such an awful position, but his parents are behaving terribly. Possibly out of immense fear, but they can't do this to their other son.

This - your MIL is selfish, she needs to sort out a suitable structure for your BIL while she's alive, has some input as to where he will go and get him used to a new place; leaving it until they passed away will mean a rush decision and be very detrimental to your BIL.

Mencap are very helpful if you need advice and also to set up a trust fund.

This is fear behavior on the parents part. And maybe a big dose of "I've been a martyr, therefore you should be as miserable as we were!" Everyone, including you amd DH gets to live the lives they choose. They can do whatever they want and you can still do what you want and be ethical, moral people. The issue is they ASSUMED and that rarely works well.

I have a cousin in a care home. He is 40 and LOVES being around people 24/7. He comes home for visits. Care homes can provide very enriching experiences and it's a shame your PIL were so rigid. They have potentially stunted Tom's experiences.

’other people with mental health issues’

Sorry???

Autism is not a mental health issue, it’s a neurodevelopmental condition!

The media would have you believe such nonsense, but stating it like this, someone may be misled into thinking this is true, which would be a real shame.

I gave up reading the thread as it is very close to home for me, sorry. I have two ds'; one at uni and very social, no needs and one with severe autism and ld.

Our aim is to have ds2 transition to some sort of supported living while we are able to have a say and advocate for him. This means that when we do die he will hopefully be settled and only our absense will be the change in his life rather than everything all at once.

We hope ds1 will become a deputy for ds2 after leaving uni (similar to lpa but for those who don't have capacity). This means ds1 can safeguard ds2 but hecan still have his own life.

I would suggest your dh amd inlaws look into deputyship. There are two types health and finance.

We aren't overly concerned about finance as we've set up disabled person trusts on our wills so anything ds2 gets will go into that. This also stops the LA from taking any inheritence. We've stipulated that anything left in the trust when dh2 passes should go to dh1 or his children. (Dh2 shouldn't be having children, he isn't capable of that sort of relationship).

A disabled/ vulnerable persons trust is someting else your inlaws/dh should be looking at too.

I really empathise with you all so hope you get thongs sorted. Looking at the issues pratically and with what people are willing to do is in the best interests of your bil.

This.

If your DH envisages being involved in Tom's care after parents are gone, as in overseeing the care, advocating for him when needed, whilst the hands on caring is being done by others, this is an ideal scenario and Tom will be very lucky to have that caring brother in his life.

This would be while you all have your own independent family life, with Tom cared for in another location. Win-win I'd say.

It's uncomfortable for now, while parents are trying to call the shots, but ultimately they can't make your DH do anything he doesn't want to do.

This. I feel for you both this is very stressful having this hanging over you. Your inlaws are being very unfair to not plan. I would honestly not have much contact with them for now. I couldn't get my head around their attitudes.

They have already decided that they do not want to sacrifice their lives to care for him though. They done the right thing being honest about this in the hope that the parents would start preparing their son now. They shouldn't hide the truth to keep hold of inheritance when they know they won't be taking him on full time.

They should hold firm and say they will have there for him as a brother only and not a carer. He won't be dropped from their lives, but they will not sacrifice their life to care for him.

What you joke about isn’t funny. If one of your children takes your child in who has a disability they get will everything you own but your other children will get nothing?

All of your children deserve a life of not having to care for a sibling and I sincerely hope you haven’t made this “joke” to them. You don’t know that your child will have have lots of advocates, that isn’t how life works, when children get older they have a right to live their own lives and have their own families without the burden of having to care for or advocate for a sibling. You need to ensure you’re making provision for the child with additional needs without making your other children feel guilty about caring for them if you’re no longer here. You can secretly hope but you need to live in the real world for goodness sake.

Children who have siblings with additional needs are NOT responsible for them in later life. I completely understand the need for parents to want or hope for siblings to care for their brothers/sisters when their parents aren’t able but to say your child will have lots of advocates is unreasonable if you’re meaning the other 4 children you have. Please don’t put that pressure on them, this is your issue to solve as a parent. Also, remember that children with siblings with various disabilities can often go through hell because their parents are caught up caring for one child.

You're contradicting yourself a lot in your post. You’re agreeing with the OP then saying you secretly hope one of your children will take your child in? How do you expect your other children’s lives to be of you secretly hope that? You surely can’t expect one of their siblings to have a family and care for a sibling with high needs? That’s just selfish.

Parents of people with learning disabities who refuse to talk about long term plans are surprisingly common. Theres nothing to be done if families refuse care or support unless its a safeguarding issue. And it is, indeed, awful for the person with a LD when the parents cant care for them if there hasnt been a proper transition. Your BIL is obviously well known to social services/adult social care if he has been offered residential care in the past. This neans that you can contact them without betraying anyone, possibly when PILs health starts making the situation at home untenable. Inheritance is tricky here as anything BIL inherits can and will be taken to fund his future care when his parents are no longer around. The one exception to this is if he inherits the house and he continues to live in it then that wont be taken, but if he inherits and then moves into residential care it will be included in his assets for charging purposes. If your PIL can take proper advice about what to do about money that would be best, though I don't know if they are in any frame of mind to discuss it with you or your husband. Would PIL accept contact from the local carers centre?
Stay strong on it. You can, as you say, stay involved and caring without the damage that would be done all round (including to your BIL) if you did hands on care. You are right to see this now. I'm so sorry you cant make plans accordingly - you might need to wait until it gets to much nearer a crisis.

Mother of a severely learning disabled child here. I have a few thoughts I'd like to share.

1. Our child is an only child and we constantly discuss the idea of if we'd had another they'd have a protector in this world. The best protection they can offer is a plan and if Understandably its not manageable for Tom to be with your DH and kids then planning to protect him is in his best interest.
2. I get why youre frustrated with your MIL, I really really do. But also I understand why she feels this way.

Its terrifying, knowing that when you die this person you've raised and protected their whole lives is going to be without you. They might not understand why, my daughter wouldn't, and that is heart breaking to think one day she just won't ever see me again and she won't know why. And im scared everyday about it, and im only 36. So to go through that til her 70s... im just saying cut her some slack. I think its easier to be pragmatic about it when you look outside in.

My advice would be:

• Tell them your plan. Look at places so Tom could start visiting or even staying whilst his parents are still alive cos that would make the transition easier. Make a visitation plan, make sure they (and Tom) know that they aren't alone. It would be kinder to Tom this way as he would have the consistency of his parents who could potentially visit daily at first.
• show concern! My brother is autistic (not severely and not learning disabled) but he doesn't get why I dont find his factual, objective approach useful in stuff like this. I want to know all options have been considered, what are you going to do to make sure he isnt being mistreated etc the fact is that abuse does happen in places like yhis sometimes and its hard to spot.
• use a Tom first approach. Instead of 'its not safe for us and the kids' lead with 'it puts Tom at risk if he doesn't have our sole attention'. This isnt because he's more important its just how sen parents are wired.
• finally, shes scared of SS because when Tom was a boy that was a genuine fear. If you weren't seen to be coping the SS would come and intervene. When they were kids, kids like Tom would be locked away in awful asylums. Lots of parents are scared of SS!

I hope this helps, not trying to have a dig at you just offering some perspective. MIL has probably spent the last 30+ years in fight or flight (fight) mode. It's hard.

Of course you would hope one of their siblings takes them in. Or that they share it between them.

Also you would want to give your money to the one who will potentially have to fund the LD sons care. And its their money to do that with because it is a financial burden they will be left with through that decision.

Not all her children will necesssarily have/want a family, some adults with LD are absolutely fine with children.
Dont make out like this poster is a monster for wanting their child to be cared for by family if they are willing.

I think there’s been some good points, and advice - unfortunately with a few quite incomprehensible attacks.
The only thing I would really and strongly reiterate is that social care will not step in unless essential- if they think/are led to believe your partner is picking up care then there will be no extra help - and it’s no good saying you’re struggling when such care has started - you have to be incredibly firm up front. Offer nothing, insist you can do nothing at all whatsoever. Even though you obviously will have some input - only way to get minimal IME although with such significant needs it could be different.
Unfortunately, nothing can be said really to change current set up as in start getting bil accustomed to carers. It’s rather late in the day for your PIL to change their firmly held beliefs/feelings/ways. Unfortunately, too though, as others have said, they will gradually become too infirm, and one will go first. During this time it is quite easy to start to just do bits of support for the parent, which will grow and grow and somehow you realise you’re doing it all or at least significantly more than is attainable.
Your husband needs to decide what he can/can’t do in the circumstances a parent needs assistance - for example their shopping is a common thing seems easy to do (but gets wearing even so!) then halve that - if he can’t just refuse outright, and I’m not sure he will be able to when struggling with grief himself - he may (most likely will) too want to help his remaining parent. Trouble is when helping a frail parent then this will auto include bil so could get very messy.
The PIL will be telling any social worker not to worry your husband is doing that - so they won’t worry as they have too many other cases and too little money.
They will have some file somewhere I think so maybe it would be a good idea just to get it noted you/husband cannot and will not be able to do any care for bil, and honestly tell social similar for parent/s whether you do/don’t help as that’s the only way to get minimal support at least with the elderly, sadly. Not easy I know.
All the very best to you all.

Wow! So many assumptions and interpretations that it would almost be comical, but i'm actually baffled and slightly aghast at the reply that you have conjured up.

Right-o, stranger on the internet, I will do as you say and make sure I get myself firmly back in the real world, for goodness sake, and have a plan for my severely disabled child. I will also make sure that in the process, I dont do to much damage to my other 4 young children. I must remember not to joke to my 18m old about their inheritance, its not funny, got it. I also need to be more careful about contradicting myself when it comes to the future of my very vulnerable child, because really, it clearly isn't as difficult, heart wrenching or as scary as I think. Your helpful post has helped me see that. I will make sure to reread your helpful post when i'm lying awake at night worrying about the impact a severely disabled sibling will have on my 4 other children.

Thank you for your wisdom.

P.S My husband is a service manager in the the adult disability services. I will make sure to pass your very helpful message on to him. He's going to love it!

@Bumblingbee92

I think you’re handling this just fine. DH has realised his parents approach was not a fair one, and has been as fair as possible in return.

BiL will end up going into F/T care, by the sounds of it, before MiL passes, and she’ll just have to accept deal with it.

Hold your kind but firm boundaries.

I can understand the temptation with the call now to SS, but not sure it’d help, and if DH doesn’t want that, I’d maybe not.

It’ll get worse before better. I really hope DH holds his boundaries when the shit hits the fan!!

All the best with your own family and new baby! Thank goodness DH is not like MiL!

That’s the thing @Hopingtobeaparentand @Bumblingbee92- holding boundaries, very difficult on the spot - so some sort of plan in this breathing space time needs establishing. Obviously, you can’t actively start processes but you can look into residential care, write down plans so you can look back on them.
I had no idea when left to look after 2 bedbound parents suddenly - I said I could be there - and that was it 24/7. When next time I wanted to sort just one coming out of hospital then I knew my boundaries/capacity and worked with that being excessively firm with social care - they still easily get eroded though.
If you can make some sort of agreed rough plan I would do that then I recommend just put the worry of it all to one side - the worry is both draining and pointless and leaves you without reserves when you have to actually deal with a rubbish situation, which IME is never the one you expected anyway.
I learned this a long time ago - works pretty ok for me - not for everyone and it’s easier said than done. But do take care of yourself in this.

Out of interest, do his parents have a plan for when THEY need a bit more care and help? Do they have power of attorney set up for themselves? Is DH one of the attorneys?

Their ageing and either gradual or sudden loss of health is going to become more of a problem for the care of his brother, yes, but more directly meeting their needs as they lose strength and capacity is also going to become a problem. It sounds as if there's more than just the care of DBIL that's going to become an issue.

I really feel for you and your DH, OP. I think that his parents lack of willingness to help BIL to transition to a care model perhaps isn't the only thing that they're doing that is going to negatively impact your DH's ability to make sure they're all okay.

It’s for the children to volunteer, not to ever be asked or expected.

Has it occurred to your ILs that something could happen to your DH, and he simply wouldn't be able to look after his brother?

I hope to goodness that it won't, and that's it's not likely, but I think that whenever you are thinking about the care of a vulnerable person, adult or child, you do have to consider the possibility that the family members you are depending on for so much, may not always be around.

Any future care arrangements have to take this into account, and should be made on this basis. That way you can arrange for the best care possible, and not have to 'make do' with whatever is available at the moment a crisis hits.