To be annoyed friend assumed I'd care for DB

[PlinkPlonkFizz]

My DB has autism, learning disabilities and challenging behaviour. I love him dearly and understand him very well, enjoy his company but also find him very challenging as my parents indulged him. They rarely used respite when we were growing up and DB comes first ahead of everything which I understand but also feel frustrated by sometimes.

Talking with a friend recently I said I would not assume the role as DB's full-time carer when my parents die. She said "oh, you're very hard". I was really furious because I think she has zero idea what it takes to care for someone like DB, but is happy to judge me. I don't think I should have to chuck my career away either. AIBU?

People talk bollox quite often - wanting to be seen as supportive or kind - when the truth is they are upsetting and annoying.
I recently had a serious health issue - the number of 'you'll be fine' s I had to listen to when there was no guarantee I'll be fine or, if I was, how long the 'fine' might last.
Also have a family member with dementia - lots of 'helpful' suggestions - why not take them out to X for the day, err no, they fall regularly and are far too heavy for me to lift, or even 2 to lift.
Very irritating. But just switch off.

A friend of mine has an adult son brain injured at birth, who is mobile and, while not able to live independently due to clumsiness and LD, would hate to live alongside people with disabilities greater than his - he enjoys interacting with NT people.

My friend has tried & tried to get some form of input & support from social care, with a view to assisted independent living, but she is told that there is nothing for him.

My suspicion is that this is in part because he has a safe home with his mother - they would both much rather he lived independently with appropriate support, but, short of kicking him out, it looks like this will only materialise when she can no longer provide a home for him. So sad.

@Walkacrossthesand when I was doing research for my brother there were some independent living flats that were linked to care homes. Id your friend's son didn't want a group home this might be ideal.

I do understand your position, but it also makes me want to cry. My ds1 has similar sounding needs to your brother and in an ideal world, when I'm no longer able to care for him, he'll be cared for happily in a care home with regular visits/respite from his siblings.
However, it's not an ideal world is it?
There are regular scandals about the abuse of vulnerable people in care homes. Even if there's no abuse, they're understaffed by people on minimum wage and overworked because there's better pay at supermarkets. So the chances of living in a safe environment, let alone a loving and stimulating environment aren't the best. Obviously there are good places and I've met wonderful people who are saints, but my ds has also experienced respite that's distressed him to the extent he's refused to go back.
I'm sorry to be so negative, you sound lovely and your friend was rude. But I do understand your dad's position, despite how frustrating and blinkered it is.
It's my greatest hope that my other children care for their brother, not necessarily in their own homes, but be closely involved enough that they can keep him safe and , please god, happy.
I don't want them to make themselves ill, I do want them to lead their own lives, I just don't know what will become of their brother if they don't have a high level of involvement.

@nokitchen that was exactly the kind of thing my friend was hoping for, I guess provision depends on where you live.

I absolutely understand your point of view as a mother @defineme. But the longer that the situation is left with no plan, the more chance that the outcome won't be a good one.

My mother had two plans for my brother (1) that he would die before her. Now back in the fifties this was quite likely as people with his combination of LDs and uncontrolled epilepsy didn't tend to live beyond middle age. However modern medicine and the fact that he is as strong as an ox and never even catches a cold means that he could easily live into his eighties and beyond. (2) was that 'family' would look after him. My sister moved to another country and comes back for a few days every couple of years, all the extended family have died and so there's just me.

Had my mum faced up to the fact that he would need care at some point and supported him to find a nice care home when she was younger (and didn't have Alzheimer's herself) he could have had a good transition, coming home to stay with her at weekends etc. there would have been the luxury of viewing care homes and supported living units and having him on a waiting list until a place became available.

Life expectancy for a person with ASD, LD, and epilepsy is 39.5. It’s shocking but I remember when it first came out (2017) wondering if it was really driven by when their primary carer died or became unable to care for them.

I’m sorry OP, it is so hard when people can’t face the reality. My own son lost his care package very quickly for reasons that were not his fault. He ended up coming home to us for a bit but our other children had to move out so that could only be temporary. The emergency package put in place failed within 24 hours and he ended up sectioned nearly 400 miles away. He had never been away from me for more than two days before and was suddenly an 8 hour drive away. It was horrific.

He now has a brilliant care package. Lives 5 mins from us and I am very involved (am spending tonight with him with a support worker as he needs 2:1). His accommodation is very secure (own tenancy in a bungalow owned by NHS). But this took 16 months to set up and that was with me on the commissioners arses all the time and while he was costing them 12k a week in hospital (so plenty of reason to get him out). It is not unusual for the above to take ten years or so to set up.

Google Rightful Lives - a website and Facebook group has lots about the reality and risks for people with learning disabilities who are left with nowhere to go. Your parents have the chance to set up a great package (my son’s now is brilliant) - but they need to fight for it. If they ignore it he will be placed wherever he can be and if there is nowhere he will end up in a hospital.

I think you were just waiting in the wings ready to drop this "fact" which is why I wouldn't answer your repeated questions about my and DB's age. Life expectancy is not a definite and has no bearing on the situation.

Its not clear how old the OP is or how old her parents are and that is actually far more pertinent than her sex

Really it's not that simple. Your posts throughout this thread have been simplistic and lacking in awareness. DF never suggested my other two younger DB's care for him, so it IS simply because I'm female that she expected me to slot into the caring role.

The shocking life expectancy is due in large part to people dying avoidable deaths. It has little to do with the presence or absence of parents and everything to do with a health system that remains completely inaccessible to people with learning disabilities and their families. Along with a good dose of diagnostic overshadowing.

I’m sorry I hadn’t seen your post mentioning your DBs existence so I had assumed you were an only child.

Fundamentally it IS simple, you either care for him within the home, or care for him by using residential care which you either take a role in (eg involving yourself in decisions and possibly having him to stay or visiting) or you don’t and he will be cared for by the state.

Of course life expectancy plays into the equation, not least because financial planning is fairly important. Your age is pertinent too, and how many children you have and what your husband has on his plate. For example my mother and my FIL are both reaching an age where they need more support but I have an adult child who sounds very like your sibling. I cannot have all three to live with me whatever is “expected” but I don’t see that as the only way of supporting them. I hope my children will make similar thoughtful and loving choices, and I think that’s what you are doing because hands on care really doesn’t sound like what you want to do.

I’m sorry I’ve upset you. I should have been clearer in my first post that caring is not being locked up with someone 24/7, and there are options that are just as loving. I think my children know that but your post has prompted me to underline it for them just to be absolutely sure, so thank you for that.

@Sindonym if you have links to support that information I’d be SO grateful.

OP, your bully father can say what he likes, pay him no heed.

You do what is best for you.

You sound very caring but offering up your life to care for your sibling is a non started so don't allow it to upset you.

Don't take any bullshit from your other two brothers either on the subject, or your mother for that matter.

LeDeR has the official reports leder.nhs.uk

But have a look at the Rightful Lives website/online exhibition and Twitter and Facebook pages - they highlight early deaths frequently and have met with ministers etc rightfullives.net

Also George Julian’s Twitter - she loved tweets the (often harrowing) inquests of people with learning disabilities twitter.com/georgejulian?s=21&t=KitC0FcGtsJrM775HWwOAg

*live tweets

No, you’re not. What arrangements are your parents making for the future. Needs to be considered, now.

My brother who is now in a care home has a far better standard of care than he did when he was living with my mother. Not because she didn't love him and care about him. She absolutely did. However she let him rule the roost for the sake of stopping him kicking off. It was literally ANYTHING for a quiet life. So if he wanted to eat nothing but biscuits that was fine.

He didn't like ambulances so when he had a stroke and couldn't get out of his chair or talk she waited 6 hours until she rang me and even then begged me not to call an ambulance because it would upset him. It went on and on. Whereas now his care is exemplary. If he has a fall it gets properly checked out. Everything gets monitored, he eats balanced fresh cooked meals every day. I would imagine he will have a much better life expectancy now than he did with an old woman with dementia.

@Sindonym thank you 🙏🏻

Your friends comments probably hurt because your worried about your DB future and are powerless to do anything to prepare him for life after your parents. Realistically people don’t see the really tough parts of life with complex medical, intellectual and emotional disability. At end of day OP your DB is not your child and you have your own life to live. It’s a tough situation for you OP but keep giving your parents reminders that your not doing it.

Both me and DH have a severely disabled sibling. My PIL are both deceased and made plans for BIL long before they died. They never expected DH to take on that responsibility. My DM had cancer a couple years ago and still won’t talk about long term plans for my sibling. She fully expects my DSis to do it and sulks when I bring up the topic and tell her that it’s not my DSis responsibility. I don’t live in UK and of course our DB isn’t expected to become a carer because he is male.

Apologies because I've not read the whole thread but have you seen the charity Sibs @PlinkPlonkFizz? Sibs.org.uk support siblings of disabled people. We have an adult section on the website and care of siblings in later life is something we talk about. Have a look.

YANBU.

I’m in a similar situation OP, but I’m very fortunate that my parents have planned ahead so that care is in place for my sibling and I won’t need to be a full-time carer.

I don’t say this lightly but I would honestly question whether I could continue the friendship if someone said that to me. I’d be so angry.

@PlinkPlonkFizz I know you have lots going on with thinking about your DB and his future care, but if you want support or information around your father developing dementia then the Elderly Parents board can be really helpful. It sounds as though your DM may gradually have two people to care for and that will change the dynamic of everything. It may mean your DF has less of a say in provision for your DB if his potential dementia develops and decreases his capacity.

Sorry you're in this situation. Especially sorry your friend sounds like an unthinking dick.