Caring/mil aibu

[rocky4321]

I wasn’t sure where to post this, but it really boils down to MIL being what I think is unreasonable and due to it not being my family drama I don’t want to share his private matters for support in RL.

DP has a sibling ‘Sam’ with severe additional needs; non verbal, needs complete supervision 24/7, help with all personal care, has a history of violence, zero sense of danger, dislikes any change of routine etc. my DP loves his sibling unconditionally and will always take care of them but doesn’t feel he has the capacity to take on 24/7 hour care once his parents aren’t able to without completely jeopardising any form of his life now I.E. quitting his career as he wouldn’t be able to work from home with Sam in the house, myself and the kids would have to learn self defence just how his family did, we couldn’t live where we do live etc.

I feel for MIL as her life is absorbed being Sam’s carer (she’s sacrificed her life for Sam and I respect how she does it on a daily basis) and it must be frightening to think that one day she won’t be there for Sam. DP has always ‘known’ he’d be expected to look after Sam once MIL was gone and was never really given the choice if he wanted to or not.

to cut a long story short DP has told his mum that he cannot commit to being Sam’s sole carer but will always support Sam as much as he can to make sure they’re always looked after and has a good life, just not full time in our home. DP has also told MIL that we’re hoping to try for a baby in the near future and with Sam having their own needs (firstly Sam cannot be around noise/kids crying/playing etc) that us having Sam 24/7 isn’t viable choice and as a family they should start thinking of a plan.

MIL has had this news for a month now and is still throwing insults at DP (he’s a disgrace of a son to turn his back on his family, why bother bringing a child into this world when he doesn’t care about his own blood, how self centred he is etc etc).

This weekend MIL has seemed to change tactics from pure guilt into me, DP and Sam to spend more time together. She’s completely refusing to engage in any conversation of coming up with a plan ‘b’ as between throwing insults (which is still constant) is how plan ‘a’ can work. Suggestions on how plan a can work are ‘It’s modern for men to stay at home therefore OP can just work..’ or ‘maybe you’re not ready to be parents if you cannot take care of someone with SN’ or ‘maybe OP will fall in love with Sam and won’t want Sam to be abandoned’ or ‘babies aren’t babies for ever and Sam might not need to move in for 20 years’.

DP has shed so many tears to me and MIL regarding this decision but at no point has she tried to empathise with DP ‘you can think of your own happiness but I’ve got to think of Sam…’

While I wouldn’t put more stress onto DP my patience for her is wearing thin and I’m loosing all respect for her for not considering DP or our family’s needs/happiness at all (let alone the horrendous things she has said for the past month). Luckily I’ve not seen her for the past month but I can imagine her saying something to me and I’ll just struggle to keep my mouth closed. AIBU?

I have an ex colleague who has a cousin in a residential home near my house, I think he was under pressure to take him in. he was in no position to do that. Both him and his wife work outside the home. However, he lives in walking distance and takes him out a few nights a week, I see them out. I think it’s the best it can be.

It’s been another week of a barrel of abuse from MIL; if she ever takes a breath from disgusting insults to DP and he either begs her to stop with the insults or attempts to say that there are options she does a whole 360 back to beginning the insults again. If he doesn’t answer the phone it’s ‘not sure why I bothered to call when you don’t care about anyone else’ or when he does she’s finding a new reason to reduce him to tears.

DP is nearly at breaking point now as he’s the most loving, selfless, calm and rational person I have ever met.

there’s a few options available to Sam and a couple would mean that Sam would probably have a better quality of living than DP being an exhausted and burnt out carer. MIL is actually pretty clued up and has quite a lot of support all ready from various charities and the local council. In my opinion she’s been a martyr and always openly judged other families for ‘abandoning’ family members therefore she’s going to have to fall on her sword for plan B. DP says that others within Sam’s community/circle most started transitioning into independent/residential living in their teens/early adulthood. Sam already occasionally attends a day centre which some resides in and DP says it’s a real lovely place/welcoming/great staff and management; there’s plenty of options but MIL is too fixated in trying to break DP.

So sorry to hear this.
So hard for your dp to deal with.

Again, easier for me to say than for him to do but ideally he should just cut the call off EVERY TIME she starts insulting him or having a go.

I can understand as I have two with asd who will always need care. My ds is now in supported living and my dd is still at home. However that won't last for ever. It would be unfair to her not to have a careful transition to a new home before I am ill or unable to care for her. I would also not expect my family to take her on permanently.

Has anyone impartial ever asked Sam what he wants? Explained what his options are?

I 100% don't think that your DH should take on the responsibility, but Sam should be allowed an opinion as much as possible.

Your poor DH . MIL is obviously very frightened for the future of her son but to force his care on his brother is wrong. Do you have the details for Sam's social worker. Perhaps now is the time for DH to meet with them and explain he will not be taking on full time care of Sam and that a plan needs to be made. You have no idea what MIL has told them about future planning and its not in Sam's best interests for this to be a rushed emergency.

I would tell her she is a disgrace of a mother expecting her child to give up their life to care for her child their sibling. My youngest has disabilities and I know that when his an adult he will still very much need our support. I also know I will never expect his older sibling to take on that role full-time. I would hope he will keep a close eye on him to ensure his happy and healthy when I am no longer her but why should he give up his life and potential family. At the moment we have family that eould all pitch in. As the numbers fade in years to come we will review his abilities and look at our options.

You are doing a brave and great thing but there's just one difference. The OP's husband is the sibling and might feel the responsibility but the OP didn't sign up for this and neither did her children. It's not fair to expect a spouse to carry that huge weight and responsibility too. Because the reality is, if Sam came to live with them, their whole lives would be taken up with his care.

Having said that, I have a friend who has an adult son who has complex needs, is also non verbal, cannot walk etc. He requires 24/7 care so when he got older (and physically much stronger, with episodes of physically lashing out), they were able to build an annexe onto their home. They have carers (funded partially by the state) but because he's in the extended area of the house, he's still very much part of family life. However the day-to-day caring is undertaken by the carers. He also has regular respite care so that the family can take short breaks etc.

Obviously that may well be out of financial reach but it is something that's worked for them.

Agreed. Siblings are not parents. If they choose to step up that's to be massively admired but it's not an obligation. Your DH should always look out for and support Sam to be happy and comfortable - but not to the total detriment of his own life, and that of his spouse/children. What MIL is really saying is Sam is MORE important than everyone else, because as long as he's alright never mind that her other son's family life is ruined. She must be worried and that's very hard on her, but her treatment of her other son is disgraceful.

A couple I knew had a son with special needs, a lovely young man. The parents looked after him at home for many years, but as they got older, the son moved into a residential home. The parents wanted him settled somewhere BEFORE they were unable to care for him any more. No sudden changes to upset him.

I am going to provide a different perspective which is essentially what my mum had to do with her sister who has additional needs and very similar situ.

We dealt with it after Grandma was gone basically. Auntie was found suitable accommodation (actually somewhere really lovely) , and visited regularly and cared for. But she didn't live with my Mum. Not Gran's choice, but ours once she was gone.

Having someone in care environment is really still very very hard work btw- they really need looking after and looked out for from buying clothes, labelling them, ensuring they are cared for, days out etc.

@saddenedsosaddened do you work, have a partner, DC?

@CharlotteUnaNatalieThompson
A very fair point but then call it what it is.
Of course it's a massive responsibility and one OP's husband doesn't want to take on. He can, he doesn't want to. Yes, well within his rights but that doesn't make it right in my humble opinion.

@SafeguardingSocialWorker
I have not said that a carer's life and happiness is worth less at all and I very much resent the implication that caring for my sister has made my life worth less. If I did nothing else in life than make her day better and maybe a little easier I am more than happy. Granted, carers can become overwhelmed and suffer physical and mental issues (much like any job) and in that case, care is essential. This is not the case here.
An elderly woman is currently managing his care.

@toomuchlaundry
I am married yes with children - I am 42, my sister is 47. I do not work now, I was an accountant before my sister came to live with me, money is tighter sure but well worth it. :)

To clarify to other posters just in case the opposite was assumed, neither of my parents put any pressure on me to take my sister on.
When I was a child they had a plan in place for residential care if they passed and they always encouraged me toward career and my own family both of which I pursued.
Neither do I have an issue with residential care itself - I have seen some bad sure but mostly just caring hardworking staff doing their best.
The issue for me is that, they will care for her, make sure she gets her meds and that her socks are on the right feet, keep her fed and clothed and safe but who will love her?
Who will always put her first and tuck her in at night and give her the biggest portion of cake? ;)
Care was just not an option.
To summarise, being a carer is bloody hard and takes sacrifice after sacrifice but jesus, people are living through wars, poverty, starvation - you are more than capable of having a great life and being a carer.

What would happen if you couldn't have afforded not to work, not had space in your home@saddenedsosaddened ? Have your DC missed out on things due to your caring responsibilities, reduced income?

* It's great to say it's 'not for everyone' but my point is, in my opinion, mothers/siblings dont get to just opt out because its not for everyone.
It is not a siblings place to care and rear each other.
I'm afraid this is a martyrs attitude,
there are perfectly suitable supported living places available.
No child should grow up knowing they have this to face.

It's like the story of the sibling who had to keep giving organ donations and blood etc for their sibling (ok not so drastic) but one day had enougj and said no. You dint have an obligation to a sibling. There's only so much help you can give before it destroys more lives in many circumstances. Do what you need to do and I think.your dh needs some space from mil.

In my opinion she’s been a martyr

YABU for this. Walk a mile in someone elses shoes.

@toomuchlaundry
I live in Ireland so I receive carer's allowance since having to leave work. A significant decrease in income obviously but we make do and consider ourselves very very fortunate to have the support of Irish taxpayers and live in a country where this is available.
I dont think our children miss out on anything anymore than I did growing up with my sister. She is older than me so I never knew any different and think that makes a difference i.e. my parents had to adjust their lives to her, mine has just always had her in it :) I never felt neglected or overshadowed. If anything, growing up that way taught me to be empathetic and considerate, traits I am happy for my children to have.

@OnaBegonia
You're right, it's not their place - ideally parents raise their children and life goes on. But again, residential care is no replacement for, what is being described as, a truly loving family member so faced with these options the point remains.

Agreed! Or run.... or ski.... or jump lol

But if it will have a huge detrimental impact on the carer and their family unit, then surely better for the person to be in a residential home if suitable care is available.

When my DF’s health deteriorated due to cancer and dementia and he had to go into hospital after a fall, when deciding whether he went home or into a home, one of his nurses said to my mum, better for him to be in a home so my mum could continue to be his wife whilst someone else took on the carer role. Unfortunately, he was so poorly he died whilst in hospital. But there would have been no guilt for him going into a home as neither my DM or I could give him the care he needed 24/7

Although my DF would have liked to have come home he wouldn’t have wanted my DM to be run ragged looking after him, and not having any life of her own

@saddenedsosaddened
You can't criticise those who don't want to provide care for a sibling, not everyone has the want or capacity to do it. I would never want that for any of mine.

@toomuchlaundry
So sorry for your loss and under such circumstances, that must have been a very difficult time. :(
I absolutely agree, as I said upthread, that care has it's place when the carer is suffering physically or mentally as a result of providing care. This is not the case here as OP is describing the negative impact Sam will have on her husbands career or plans for a baby.
I have given this a lot of thought today, questioning why I feel as I do and so strongly too (!).
I think I'm perhaps overly irked because I meet these people all the time in my circles; the poor put upon siblings explaining why I dont see their brother or sister around anymore; oh we couldn't possibly have him, we enjoy our free time, we have our own kids, we have careers that are more important - and I'm a genuinely non-confrontational person so I bite my lip and smile and nod when I just think they should be honest with themselves and admit they didn't want their lives interrupted. End of. I just cant respect that bullsh*t attitude but apologies for bring what are probably my own issues to the thread.

I totally get it . My son has Sen and the thought of him going into a care facility would sicken me. But it's unreasonable to expect u guys to sacrifice your life and chance to have a family. That's not fair. And the discussion needs to be now so between you, you can choose sams future and maybe start introducing a respite to prepare him for the long term

@saddenedsosaddened what will happen to your sister if you die before she does? Do you expect your husband or children to care for her?

Like I said before you are doing a wonderful thing by your sister, and it sounds like that works for you and your family but that doesn't mean you can expect that everyone else should feel the same. Even if the reason is that they don't want to for what you are calling selfish reasons. We all only get one life. And can therefore choose how we want to live it. Placing your relative in a care home doesn't mean they have no love. You can visit them and spend time with them and give them care and love that might actually be better quality than if forced against your wishes to look after them 24/7