Trapped caring for ageing parent

[Dappy777]

I'm worried about my brother and could do with some outside perspective. For context, he's 48 and I'm 45. He lives with our 78-year-old mother in the family home. I live 200 miles away. Brother had MH problems in his teens and 20s which held him back and stopped him working and forming relationships. When he was 29, my dad died. I had moved away by then with my boyfriend (now husband). My mother had been with my dad since they were 15 and was totally broken (anti-depressants, constant crying, near breakdown). She sort of clung to my brother, and it suited both of them to carry on living together – he didn't have to worry about rent or bills, and she got company and support.

Unfortunately, as the years have gone by they've developed a pretty toxic/co-dependent relationship. In his 30s, he grew more confident and did a bit of dating. I know there were a couple of women he could have built serious relationships with, but he let them go, partly (I think) because he felt responsible for my mother. It isn't all one sided, however. He's an avoidant, introverted, depressed sort of character without any interest in a career. Taking care of my mother became an excuse. He did an MA in literature at the local uni and could have been a teacher, but I know he'd have hated it. He isn't on the spectrum btw. That much I'm sure of. I'd say he had a full-blown avoidant personality disorder in his teens (which he still struggles with).

The older he's got, however, the more ashamed he feels, and the shame reinforces the avoidance. He's never really worked and just makes do with side hussles. But I'm worried about the future. He's 48 and she's 78. As he moves into his 50s and she moves into her 80s I can see things getting messy. He doesn't speak to the neighbours (mainly because of shame) and has lost touch with all his friends (again because of shame). If my mother gets ill and has to go into a home, I'm not sure what rights he'd have. Would the LA take the house and sell it? Would he be homeless? Even if my mother dies suddenly and he gets his inheritance, he'll be a 50-something man with no partner, no friends, no job and no experience of surviving on his own.

I was speaking to someone about all this the other day. She said she used to work in social care and often dealt with middle-aged men like him – men who'd never been officially diagnosed with anything, and never had therapy or claimed benefits. They'd just lived with their parents in the family home and hidden away from the world. Then the parents die and everything falls apart. They've often got poor physical health, no life skills, no work experience, and no social life. I've tried talking to them, but they've got their heads in the sand. I know my brother would rather have moved away, but I don't think he ever felt he could, and now he feels trapped. In reality, he is trapped. I wish I could do more tbh, but I'm 200 miles away with three kids and a stressed husband. Whenever I've tried talking to my mother she just cries. And my brother doesn't want to know.

https://www.gov.uk/carers-allowance

https://www.gov.uk/attendance-allowance

@CeilingStarsSparkesits £196 per week he can earn

Yes, I do think his life has been a waste tbh. I don't just mean career wise. I mean romantically as well. He could have made someone very happy. He's a good looking guy. He's also funny, interesting and emotionally intelligent. Had he wanted to, I think he'd have made a good teacher too – he's well read and very good with children. He had a lot to give the world.

It's not fair to 100% blame my mother. I do think she's partly to blame, and I know he felt (and still feels) he can't leave her. That in turn has meant deep feelings of shame, which led to avoidance and detachment. But he's also an introvert and a bit misanthropic (and lazy). I'm not sure how he feels about his life. And I'm not sure what sort of person he'd have been if he'd gone off to Australia in his early 20s before dad died. I suspect he regrets not having had a good, long-term relationship. I know they're not for everyone, and I'm glad society is more tolerant of the long-term single, and more accepting of those who opt out of kids and marriage, but he's quite a sensitive, emotional, arty sort of guy. Had he found the right person, I think he'd have been very happy. The cynicism and detachment are a mask. He's become that way because he's full of shame and because he's spent years avoiding people. Over time you get used to it and it becomes the norm.

Like your friend (maybe?) he's a shadow of the person he could have been. Not that there's a 'right' way to live your life of course. But it does seem so empty and unfulfilling – sexually, socially, romantically and creatively. He's had so little intimacy and fun, that's the sad thing.

Actually, the tragedy of his life is that he overcame his mental health problems too late. In his 20s he was crippled with social anxiety and probably had an avoidant personality disorder. In his 30s, he did a lot of (casual) dating, did an MA, took up hobbies, and grew in confidence. But by then he felt trapped, and that's how he's lived ever since. Had he left home at 18, my mother would have had to adapt to my father's death. Tbh I think he sort of gave up on life when he turned 40.

I suggest getting your DM to get this signed
So that it is ready if you need it in the future
Health
Wealth

www.gov.uk/power-of-attorney

It is your brothers choice to stay there

If he receives an inheritance in the future, perhaps he will travel the world or buy a camper van
He may have dreams

My neighbour who is 40 is also stuck at home caring for an ageing parent who won’t move all day never mind help themself.

He is going to have no life or family of his own but his siblings focus on their own lives. It’s awful to see.

Take some responsibility and for something sorted for your eldery morher. It’s massively unfair for one child to have their entire life wasted.

I think he's ashamed to be a 48-year-old man who lives with his mum in the family home. Well, I know he is (because he's told me). It's also why he doesn't date or try to build close friendships. As he's got older, he's sort of dropped out of the world, and I know it's largely due to shame. That's why he avoids the neighbours and doesn't speak to them. (Actually, that also worries me, because as she ages he may need to turn to them for help.)

Yes I agree there is more you could do in this situation OP. It doesn’t sound like your mother needs constant care so could you invite your brother to come and stay with you for a night or get an air b and b near them with your kids and have him come and stay over without her to give him a bit of space and freedom. His art sounds like an outlet so could he be persuaded to join a club for that, maybe online if face to face is too threatening

I knew someone in the same kind of situation except the mum was in her 60s when she died and he was in his 30s with mild learning difficulties and never had a job .T

They lived in a 3 bed council house and when his mum died he had to move out but they gave him a 1 bed flat .

Said kindly , as much as this could have been the family home for years , you cannot expect the council to allow a single man to remain in a 3 bed ( if it is )

Well, I can't 100% rule it out. But if he is autistic then it's a unique kind of autism. He ticks none of the boxes. In fact, he's the exact opposite in so many ways – highly empathetic, emotionally intelligent, very ironic, quick to sense sarcasm or double meaning, highly sensitive to other people's moods, etc. He has a very literary, arty sort of mind. He's never literal or blunt in conversation. He never had any obsessions as a kid either. And there was no arranging things on shelves, no meltdowns, no need for routine, none of the stuff you normally get.

I do not understand why he would be ashamed for caring for a parent

I know several people who have done or do this

These people have all received positive feedback for their role as a carer

Also eligible for this carers discount card

www.carerscarduk.co.uk/?utm_campaign=&utm_medium=cpc&utm_source=google&utm_term=&gad_source=1&gad_campaignid=21540445619&gbraid=0AAAAAD_vSuqNnJ9xkIhzIHDJfonj1oD0G&gclid=Cj0KCQjwndHEBhDVARIsAGh0g3BOKHSMy4t952nj9szEzhNSyyWbuIBTxfbV7XzgLmj7ZBMe_TmWjEUaAhwPEALw_wcB

Exactly. Shame means avoidance, and avoidance means more shame, then you get older, and then you give up. I do feel guilty, but you have to put your own kids first. Life has been bloody hard for the last decade or so (financial worries, daughter bullied at school, stress at work, husband struggling with depression and alcohol, etc). I phoned him whenever I could, and saw him whenever I could, but he always told me not to worry about mum, that he'd look after her, and so on. He has been a good and loving brother, and I sometimes wonder if he stayed so I wouldn't need to worry.

Had he been able to get away from home in his 20s or 30s he'd have had a chance to grow. He could have dated more seriously, maybe built a long-term relationship, etc. He could also have built more friendships – had people over for drinks, etc. Shame makes you push everyone away.

@beetr00 then you don't understand shame at all
@CeilingStarsSparkes he probably isn't ashamed of caring for his parent. The shame comes from all the other stuff that people consider 'normal' that he hasn't done.

wrt their home should your Mum have to go into care @Dappy777

dependent on their local authority, he "may" be able to apply for a discretionary disregard.

@Ted27 aye, right

If he's over 50 or disabled and has lived there a long time, the house won't be sold for care, so he will be ok, unless you inherit half and decide to evict him. Poor guy.

My mother isn't ill or physically dependent. After my dad died she had a sort of breakdown and ended up on anti-depressants. She met my dad when she was very young and just couldn't cope without him. She's not a very worldly person. She went straight from her parents to living with my dad. She never built up any independence (never went away to university or lived in a house share or anything like that). Our family home is also fairly remote, and the thought of her living there on her own just seemed unimaginable. I have spoken to my husband about moving closer as she ages. His parents live in the same town, so it's likely he'll want to anyway.

As medicine advances, and we keep pushing the lifespan, adult children are going to find themselves trapped like this for longer and longer. Maybe some day we really will have drugs that can slow and reverse ageing (as some promise), but right now we're at a sort of tipping point where we can keep people alive longer but only in poor health. I have a relative, for example, who would certainly have died forty or fifty years ago, but thanks to statins and blood thinners and so on is still going in her late 80s.

Yes, exactly. Had he left home at 18, gone away to university, lived in Thailand for a bit, spent a few years working in London, married, divorced, and so on, then come home to look after his ageing mother, that would be different. But he has never left home. I think he's basically ashamed of his life. We all carry 'my story' around with us. On a first date, or when you grow close to a new friend, you tend to tell them that story. I think he is ashamed of his, and so he keeps everyone at arm's length. But time is passing and he's heading into late middle age. In 18 months he'll be 50. Then before he knows it he'll be in his 60s. He needs to prepare for that – to save money, build up close friendships, etc.

@Dappy777 i agree with your friend, there are lots of middle aged men (and less often women) who end up in this situation, for various reasons. Her summary of their situation is perceptive. I know of at least three in my circle, and they all had a really hard time when the parent died / went into care.

To advise on the practical side of things, can you clarify:

Where do they live? different rules in England / Wales / Scotland.

Does your mum own the house? or does she rent? Does she have savings or other assets?

What does her will say re the house? And as her daughter, what are your expectations? To be blunt, do you expect to inherit half your mums estate, even if it means selling the house?

How is your mums health? Do either of you have power of attorney? If not you really need to get that done: this is the only way you would have of making decisions on your mums behalf rather than the LA deciding for her.

If you mum owns her home, and at some point she needs to pay for care, then yes the LA will expect it to be sold to pay for this. Your brother does not currently fall into any of the categories where the house would be exempted. He’s not a spouse, he’s under 60, he’s not disabled or dependent.

@Dappy777
I agree. Im in this situation now with my mum and stepdad. Both are 82, frail, poor mobility, multiple health conditions, my mum has lost most of her sight.
I live 150 miles away and have been going up once a week to food shop and do basic cleaning. My brother is in the same city and to be fair does a lot but doesn't really 'see' them if you know what I mean, can't understand my mum 's extremely levels of anxiety.
But I really do feel that without modern medicine my mum at least would have been dead last winter and seeing the condition she is in now a big part of me thinks that would have been preferable

Everyday99

Honestly we’re all just getting them out more, they’re similar to op’s family and life is just shops home and tv. They’re settled and fine but my brother enjoys when we go to the cinema, bowling, library for books etc, my mum enjoys going over to my aunts, getting to dad’s grave, going out to tea etc etc. It’s basically showing them that the outside world is fun, that getting outside their comfort zone is good. I’m sure they wouldn’t approve- nobody wants to think of something that sounds like they’re a project but they both need it

My understanding is that the LA cannot force the sale of a house to pay for someone’s care if that house is still occupied by someone who has been a carer for the person now requiring care. A friend of mine was in a similar situation so we looked into it. They can claim the money back when the house is sold in the future though so it’s not a way of avoiding paying. Do please check this.

My understanding is that this only applies if the person doing the caring gave up their own house to take on the caring role. The OPs brother did not do this. But there might be ways round that.

To be honest a lazy, introverted misanthrop doesn't sound like much of a catch.

I think maybe you're talking him up a bit too much.

He's made his choices. He's nearly 50. The time to worry and help him was 20+ years ago.

None of what you describe would make your brother opposite to the average autistic person. Hyper empathy is more common in autistic people than low empathy which makes the majority of autistic people very highly sensitive to other people's moods. A lifetime of studying others to fit in makes many very emotionally intelligent, psychology is a very popular subject for people on the spectrum! Irony and double meaning - an autistic friend and I were known as the inuendo squad for a while as we would ALWAYS find a double meaning in what ANYONE said! Autistic people make many random connections that NTs do not.

I've never had anything that could be classed as an obsession, don't have meltdowns (I tend to have shut downs and isolate myself instead), don't crave routine, I think I have AuDHD so am quite impulsive.

I'm not saying he is autistic but people with low support needs are often very different to the stereotype.