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.

@Bumblingbee92

I’m so sorry you & your husband are in this position. It’s obviously completely fine for your PiL to ask your DH to be his brother’s “guardian” in the sense of making decisions for him, and having some care role in his life. But it’s not ok for them to demand you have 100% responsibility for his whole care/life.

Trying to give you productive advice, I think you need to remember you can not “demand” your PiL do anything either. You can’t make them understand or be ok with the fact you won’t be doing 100% care in your home. You can’t make them sort out an alternative plan for him either post their death, or in preparation for when they are physically able to care for him.

You & your husband can however be proactive on your side. If your DH is going to become “guardian” (that’s the word for a child, not sure if its the right term for an adult) then it might be worth looking around more seriously about what care is available. Go into care services, tell them what’s going on, tell them that you are in the position that over night you might become responsible for him and see what their advice is. Find out how quickly different places can put accommodation in place for him. Build relationships with these places so if the worse happens they know you, your family and the situation already. Maybe get a couple of different plans in place for different scenarios. Eg, what to do when PiL are too ill or frail to care for him, what to do if they both suddenly die etc.

In any scenario it’s always good to have some potential future plans in place, but particularly if you might be having to sort care while you’re also grieving the loss of your in Laws.

Good luck.

But isn't the point of the issue that the transition to 24/7 care by new people is going to be very difficult, but it's likely to be a lot easier if he can live at home and have people visit, then visit the setting, then stay at the setting but have lots of visits from his current 24/7 carers, than if his lifelong carers die/are admitted to hospital and then he has to have a massive transition in his personal circumstances at the same time as experiencing extreme distress from the loss of his carers and (presumably/potentially) a lack of comprehension of why they have "left" him?

But MIL doesn't want that. She clearly cannot bring herself to let anyone but family take over the care of her son. I can see the logic in preparing now obviously but she cannot and that is my point. Tell her what she needs to hear. She isnt going to change her mind. It but be a horrific situation to be in as a mother. Let her have her last few years of life thinking that she can leave this world without the terrible guilt of not being their to look after her beloved son.

Mine did. I was very young when it was drummed into me that I’d be responsible for my siblings and I didn’t really know any better until I was around 14. It wasn’t until I mentioned wanting to go to university when I was around 16/17 that the shit hit the fan. I was told in no uncertain terms that university couldn’t happen, I was told that I was selfish for thinking that and leaving the family and my siblings…I was made to feel so guilty.

I did leave for uni and rarely came home once I’d left but the pressure continued, asking when I’d be moving back even after I graduated and had a job, a flat and a long term partner before he became my DH. Some parents really do try and guilt their children into caring for their siblings and it’s wrong on so many levels.

When my mum died my aunt called me and I remember her saying “thats your bubble burst you’ll HAVE to come back now, your dad won’t cope on his own.” I hadn’t been in contact with them for around 3 years at this point.

I don’t understand why some people are sticking the boot in to the OP, her DH and her have a life, they have children and it’s not like they’re walking away completely. They’ve said they would oversee the care of the BIL but clearly this isn’t good enough for the MIL who has no right to demand they do direct care for the BIL. I can also see the OP’s point that they have a new baby on the way and her DH is still expected to provide care for the BIL, that’s not acceptable and most likely not going to be possible with a toddler a newborn.

@NightDreaming and @Bumblingbee92 you can apply for a Deputyship to make decisions for an adult without capacity (so like Power of Attorney). You can also set up a trust and have trustees to manage finances. Mencap are particularly helpful with a lot of this legal advice.

We might say that they chose to have Tom, and your brother didn't, so doesn't need to do anything. But at the time they had him, they really might not have thought that having a child with additional needs was a possibility. It can be extremely difficult to parent as your MIL has, so I'd grant her a lot of grace-I've friends and family who have said how difficult it is, and apparently was much worse a generation ago (not so long ago, autism was blamed on the mother being cold). While I know lovely people who work in social services, and don't like her calling them evil, it can be very frustrating and heartbreaking trying to get your child the help they need, while feeling guilty about not giving the same attention to your other child-now we even use the term "glass child" to further criticise those parents when we've no idea what they've been through. Every single day of their lives.
If you are planning to have children, remember they could have additional needs. And even if they don't, a very healthy child can get into an accident/have an illness that leads to a permanent, life altering disability, and might massively affect their behaviour and how they interact with people. Obviously you don't have to take on Tom, but your own children...

@Bumblingbee92apologies because I haven’t read the whole thread but please contact Sibs. They are the charity who provide practical and emotional support to young and adult siblings of disabled people. www.sibs.org.uk

Wishing a disabled child or a child disabled from an accident on the OP? Delightful.

I think that you have to guard against doing a “favour” for the in-laws that they will become the status quo
If one of them gets ill and has to go into hospital and MIL or FIL needs a hand with looking after Tom. Then FIL/MIL dies and the surviving spouse can’t cope with Tom and “just” needs a little help which gradually becomes a lot of help which becomes the main carer

Something I do know about government agencies is, if there has been an alternative then SS themselves could decide that Tom stays with you and any progress to get Tom into residential care gets put on hold

Having seen the impact to health, both physical and mental, work and relationships that caring for someone with these issues involves

Don’t think about what you could do with the money any inheritance would bring if you had Tom living with you

Unless the inheritance is large enough to hire in round the clock care and buy a house with a separate annex in the garden or buy a place nearby for Tom to live in and for carers to come in to tend to Toms needs then the amount you would get from the inheritance would be overshadowed with what you could earn without having to look after him

This.

Your PILs can give everything to the brother but he will not be capable of managing it and will be a sitting duck to be financially abused by someone who spot his vulnerability, like a predatory carer. If your PILs had any sense, they would set up the trust and oversight arrangements above.

I don't really think you can do anything to get the PIL to prepare properly for the future. They do not want to.

I think you do need to discuss what happens though - for example, when FIL ends up in hospital and MIL cannot do BIL's care herself, yet refuses to have carers come in, and expects your DH to fill the gap, leaving you and your children to cope without him doing the things he normally does in your home for unspecified and undetermined periods.

He really needs to prepare for this - it will happen - whichever PiL is left 'holding the baby' is going to expect him to step in, and ignore his own immediate family responsibilities. He needs to be ready to say 'no, I can't do that, you will have to do xyz'.

If, and it is likely, MIL/FIL tell SS that they have another son who will help... that is going to slow down getting BIL the help he actually needs when the time comes.

I think it’s very unlikely that both pil will drop dead suddenly together. Realistically, one may die, the other will struggle to cope, social services will come in and arrange respite and so on until the 2nd parent cannot cope at all or dies and then BIL will go into care full time. You’ve made your stance clear so I don’t understand the need to keep at your pil regarding this. It’s obviously quite upsetting for them to think about and as you said, they’re not in good health and trying to maintain full time care of your bil. Leave them be and in time, social services will need to step in and they will discuss all this with the surviving pil. Bil will likely still have time to get used to it, but with ss negotiating this with pil, rather than you trying to do it.

Ultimately, you’ve said you won’t care for him so it’s done. DH can remind them of his parents ask, otherwise I’d say no more.

Most likely scenario is that PIL will become physically unable to provide care for Tom as they get older and if they won't agree to residential care, DH will then have no choice but to inform social services for all their sakes. It's a really sad situation OP but I don't think there is much you can do but leave them to it. It's commendable that they've cared for him for 40 years but it sounds like it's been at the expense of everyone else around them, especially your DH.

Such hypocrisy. Your dh should say mum you absolutely know that if I took Tom’s care on I couldn’t have had my children. Are you really telling me you wish I’d never had Jack and new Bub and that I’d stayed childless my whole life? Don’t you want anything good for me, your son?
and walk off.

Im in a very similar situation to your Dh as I was the "glass child" who grew up with a sibling woth very serious learning disabilities. Fortunately my parents realised earlier in life that they wouldnt be able to care for my sibling whilst he was still quite young, and he was placed into residential care.
We are lucky that he has very good care and has been happy but my parents have always been very involved with his care and have kept a very close eye on him.
Whilst I have never had to be his full time carer (it would be impossible as can be aggressive, doesn't sleep through the night and needs toilet and bathroom supervision), I always assured my parents that I would always be on his side one they were no longer here, and I now ensure as much as possible that I visit often, report to his carers his fears, likes and dislikes, and accompany to all hospital appointments. Could you Dh try to reassure his parents that whilst he cannot guarantee he will become a full time guardian for his brother, he will always have a caring role in his life?

Elderly parents in this situation believe their own fixed narrative. Remember you can’t change that. Social services will get involved if there is no plan for the future being made. Has your DP contacted Tom’s GP? (in confidence if necessary)

You may not have to report them - but you can prepare for what is likely to happen and your wishes:

• PIL won’t be able to take care of him/will pass away
• They are not willing to transition/prepare for it now
• Your DH will become responsible one way or another when that happens
• The extend of that is what you must prepare for; whether that’s getting advice, knowing what funding and care is available, research on wait lists, how much time you are willing to be in BIL’s life etc. Make a plan without their input.

That might not help your relationship with your PIL, but will help your family and BIL, who are the most important in the story here.

What your PIL want is ultimately not important (when talking about your family’s future). You must do you.

It’s quite easy to say you’re going to do something when you’ve been groomed since childhood to believe it’s your duty and questioning the reality of it is a betrayal of your family.

As soon as this DH realised he was going to have his own kids to care for, and a wife, of course the reality of having a very high care needs and violent adult in the home needing round the clock care would not be feasible, acceptable, practical or most of all safe. That’s when the DH opened his eyes to see it was too much and too big a request.

Imo it was abusive of the parents to put that pressure on their child, and it is shitty of them to be such assholes about it now he’s been honest and said he can’t give his life to care for his brother. Any decent parent would allow the professions to do what they are there to do and let their other son live a good and happy life.

Brilliant insight here, @Bumblingbee92where Octavia says it won’t be one single massive crisis - it’ll be a succession of smaller ones.

Easier for you to stay out of but hopefully easier for the brother to adjust.

The Above. 100 per cent.

She is refusing to make plans for Tom's future or discuss it rationally because if it becomes a crisis she is hoping you will be forced to step in and take over.

She cannot force you.
Make it clear that your answer is still no and wiill continue to be no.

It is tragic for all concerned but just as she is looking out for one of her sons, you are looking out for your DC. I do feel very sorry for your DH too.

Your refusal will support DH in not giving in to emotional blackmail.

In one respect she's right, Social Services are to be avoided at this point for adults like Tom. What she should be doing with your FiL is estate planning.

Friends of mine were in a similar position, there was no practicable way for a v disabled sibling to live with any of the other offspring so the parents made appropriate wills, organised a trust & found a good agency to provide care when they were gone.

It did require some supplementary input from SS in the end but because the parents had got the spine of care ready to go & the sibling was already familiar with the staff (they did regular at home meetings, graduating to outings after one of the parents died), the disabled sibling was able to remain in the family home rather than being carted off to some godawful private "care" facility on a deprivation of liberty order because that's quick & easy for SS to organise, & behaviour conveniently tends to decline when faced with major changes like becoming an orphan.

I think this is good advice to go ahead and research what options may be in the future.. and funding etc. and prepare for what might happen. It doesn't sound like your MIL is doing this.

I thought it was very telling when your post said that DH grew up with many families in this situation and his DB is the only one who is still being cared forat home.

Such a difficult situation but I doubt anybody would argue that it's your responsibility to become a carer, children or otherwise.

Your parents are likely coming from an emotive perspective and probably dread how difficult it will be for Tom to transition into a new environment after all these years, especially with people who won't necessarily have the same devotion to him and may view him more as a patient than a family member, or may only be able to do so much due to workload etc.

However, realistically how would it work with you having jobs and kids? It'd be an enormous burden that will undoubtedly significantly impact all of your lives. Even things like holidays would be difficult to plan. And last minute weekends away etc could be a real hassle if you need to plan around Tom. And how is he going to react to having his schedule changed due to any of the multitude of things that can happen with kids - flu bugs etc.

I agree with the comments that your parents had a choice whilst you didn't. However, I'd say this is actually different even to that because your parents weren't being asked to care for one of their siblings as well as you and Tom.

My brother has an older mate from school who is autistic but also developed paranoid schizophrenia in his late 20s. He's now 46 and living in sheltered accommodation. His mum is almost 80 but in good health and he's been in said accommodation for about 15 years now, so no doubt she still could've cared for him at the point she put him into accommodation.

However, he's not at all violent but he does need the right people around him who understand what to say when he starts hearing voices etc. Generally, people will acclimatise to their new environment even if it takes time.

This is the goal! Great to read and glad for you