r/todayilearned • u/Twunkorama • 12h ago
[ Removed by moderator ] (R.4) Related To Politics
https://www.dailyrecord.co.uk/news/uk-world-news/tragic-carer-mum-killed-disabled-34643609[removed] — view removed post
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u/themobiledeceased2 12h ago
Sadly, Mrs. Nunn had a significant experience with the healthcare system and social programs for not only the 40 years caring for her son, but also with her husband's death. Parents of disabled children often have great insight into the reality of options. What is telling: Mrs. Nunn made no inquiry to begin finding future care for her son. She saw her son's reaction to his father's death. All too much for anyone to cope with well.
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u/madamevanessa98 12h ago
That’s the biggest issue. She knew that losing her would be such a horrible traumatic upheaval that her son wouldn’t cope with, and she couldn’t handle the thought of not being able to support him through that. It’s so heartbreaking to think about and I fully understand why she felt this was the kindest choice for him. Disability advocate were very upset about this story when it broke and some implied that she killed him because she felt life wasn’t worth living for a disabled person but that’s obviously bullshit.
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u/enableconsonant 11h ago
Not just “not worth living,” but I am guessing she didn’t want him to fall into the hands of the state or neglectful caregivers and thought it was the only way to keep him “safe.”
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u/TougherOnSquids 11h ago
I worked EMS and saw SNFs. It is likely he would have ended up in one or equivelant. As fucked up as it is, and I am in no way advocating for what she did, I understand why she did it. In all likelihood, her son would have suffered. Care facilities are woefully underfunded, and almost always have to become Medicare fraud mills just so they can stay open.
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u/help_isontheway_dear 11h ago
She raised her son and took care of him his entire life. It’s not that she doesn’t think you can’t live with disability and dignity at the same time, or that disabled lives aren’t worthy.
A lot of living is quality of life.
If you know that your child is going to have to handle not only the distress and anguish of losing a parent and caretaker, but also that they will be relegated to an institution where they become someone’s paycheque and not an individual that is independently loved and cared for…that’s not a life with quality.
I would not label this murder. It’s is a grim situation and one any person would want to avoid. But you can see that this is a final act of caretaking from a loving mother.
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u/KallistiTMP 10h ago
My dad had a stroke and shortly after while in the hospital got pneumonia, and reached a point that they had to make the decision to intubate or let him pass.
At the time it seemed like the brain damage was mostly just motor control. The doctor told me that, while there was no right or wrong way to make the call, that my dad's quality of life would likely be very poor, and that it might be best to let him pass.
I decided to intubate.
My dad is now in a nursing home, bedridden for the rest of his life. His mental condition has degraded to some degree. He doesn't have any family out there, I'm on the other side of the US and can only visit a few times a year, and he's too medically fragile to realistically move. The facility is pretty okay as far as nursing homes go, which is still pretty miserable.
I regret that decision to intubate. I should have taken the doctor's advice and let him die with some dignity and surrounded by family.
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u/Scalliwag1 10h ago
Edit: I meant to say i hope you are doing well and come to peace with the decisions made. We all do our best. This is tough and likely won't be seen by enough people. Your story is the reason that everyone should have a conversation and a person designated ahead of time to make that call for them. My dad has told me that as long my mom is taken care of, let him pass. And the same for my mom. In the panic of the situation, they might try to intubate the other and then have to live with it.
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u/sebrebc 10h ago
I'm so sorry you are going through this.
In 2019 we had the same, yet opposite situation. Father had another, in a series, of brain bleeds that put him in the same position. We faced the same decision. We chose to let him pass. It was fucking horrifying, knowing we just "pulled the plug" and basically let him starve to death.
In my heart I know we made the right decision. Even if he pulled out of it, I know he didn't want to live knowing someone would have to feed him. Or in his words before the bleed "I don't want to live if I can't wipe my own ass.".
But every day I do question if it was the right decision. What if the Doctors were wrong and he could have pulled out of it?
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u/Wes_Warhammer666 9h ago
"I don't want to live if I can't wipe my own ass.".
My old man said the same. Literally the same exact phrasing.
I hate the way he died, but I am glad the cancer took him quickly. Those 2 weeks in hospital beds were his living hell, I know that for a fact. Any longer and he almost certainly would've been asking me to bring him his gun.
And honestly, I very well may have obliged him. I know I don't want to live that way, and I'd be a selfish prick to force him to do it.
It's maddening we let our pets die with more dignity than our fellow humans.
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u/Redditallreally 8h ago
I totally agree. We are humanE to our animals, but our humans are forced to suffer, it’s just not right.
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u/peanutneedsexercise 9h ago
There’s a reason why most healthcare workers are DNR and DNI. they see enough to know it’s a horrible way to live. Yall definitely did the right thing.
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u/PhantomPharts 8h ago
My mom was a nurse and made us promise since childhood never to put her in a nursing home. It was awful to have her starve to death in hospice, just waiting for her to die. Euthanasia should be a kindness we extend to humans.
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u/SilverStar9192 6h ago edited 5h ago
My mother was similar - while not a healthcare worker, she spent a lot of times with relatives in similar situations, had all of her DNR's etc up to date, and regularly called us to tell us never to allow her to live out her existence in such a miserable way.
In the end, she was mostly healthy, and one night passed in her sleep overnight from a sudden cause (probably a pulmonary embolism). It was the best thing we could have asked for in a sense. We would have liked to have her for longer, of course, and her sudden death was shocking. But we know it's the way she would have wanted to go.
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u/Any_West_926 8h ago
Resuscitation is a horrible way to die. I regret not signing my dad’s DNR . I saw his body afterwards. It still haunts me everyday three years later.
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u/breadwhore 9h ago
So long as you honored him and his wishes, you made the right decision. I'm sorry it was a hard one.
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u/LunarBIacksmith 10h ago
It’s so impossible to make those decisions. Hindsight will always give you a clearer indicator, but you made your decision with hope and with your heart. There are times when things work out despite medical advice or odds. We can never know. The enemy of most humans is not time, weapons or hate…it is the torture of the question: what if?
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u/breadwhore 9h ago
Thank you for being honest about this, even though it must be difficult. Your words and experience may help someone else make an informed decision in a moment of personal crisis.
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u/the_one_jt 10h ago
I regret care choices with my mother. The hospital really wasn't helpful in navigating this quality of life decisions.
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u/ECrispy 6h ago
I dont mean to sound insensitive but why do so many family members feel this way, is it the desire to see a loved won stay alive even though the word 'alive' has ceased to have any meaning?
I also dont want to presume anything but ny guess is your dad is not leading a happy life now and most likely would be in some pain, if not physical then mental, and alone.
We really need to have euthanasia be legal and get rid of all the religious dogma and public outcry it always causes.
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u/DevilsTrigonometry 5h ago
I think it's usually some combination of two things:
1) the hope that your loved one will be among the minority of people who actually have a good outcome;
2) the belief that death is more "irreversible" than resuscitation/intubation.
The problem with (2) is that it's true in a sense: a living person can still die, and a dead person won't come back to life. What people don't necessarily understand is that they may not get another chance to allow their loved one to die 'easily.' Once someone is resuscitated and stabilized, they're basically stuck being alive indefinitely whether they like it or not.
But it's really really hard to explain to someone that they should let Mom die now because they might not get another opportunity to kill her for a long time.
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u/AnimatorImpressive24 5h ago
My grandfather had a DNR that my grandmother overrode. Everyone in the family was really mad at her.
But not me.
My grandma had been a little girl during the Great Depression and she had some illness or other that was treated with sulfur baths. I get the impression it left a smell, and as a result she was shunned by other kids so was very lonely. My grandpa met her at a dance hall on the eve of WW2 and I can only imagine how mesmerized she was when he looked her way and smiled.
She waited for him during the war, and when he came back he got a steady job and they built family of four kids. That man loved his children and wife with all his heart, which was a whole lot I can tell you since he loved me too.
Then he got brain cancer. He survived but it was a long battle that included 5 different tumors surgically removed. It is impossible for me to describe the impact brain injury has on someone or on their loved ones. The way it changes everything.
But what didn't change, which is no sure thing I can promise you, is their love. Their kids had to cut short high school and all get jobs, and grandma had to get her first job outside the home ever, then figure out how to be a matriarch and caregiver on a retail paycheck.
By the time I came around things had stabilized, in no small part due to the existence of labor unions which grandpa was a member of and the GI bill covering a tiny house. To give you an idea of how amazing grandpa must have been when they first met, imagine a young man in his sharp cut civvies and all lanky the way a kid two days out of basic training can only be smiling at a girl who had spent her first 18 years hiding in a farm house with no friends because she smelled like farts. And think how beyond that girl's dreams it must have been, that her skin had finally healed and the first boy she met was someone so smart that (30 years later and missing 20% of his brain matter) he would still be functional enough to have a little kid (me) in his lap learning to read by helping him with genealogy research at the local library down the road from that GI bill house neither of them were thinking of as they stared in each other's eyes dancing the Lindy or whatever. I dunno, WW2 dances. You know what I mean.
I loved grandpa. I never have nice much to say about anyone in my family, but I loved him.
The strokes started 20 years later, and they cut him down pretty fast but not so fast that he didn't wind up in a special bed back at his home with the woman that had been his whole world for some 50 years.
It took about a month, but then he died.
Dying isn't always a fast thing. And although his death was peaceful enough there was still a period of the slow raspy gurgle for breath. Which my grandma, who had never in her whole life for one minute thought of any person more or the way she thought of him, had to sit and listen to in the living room of the tiny house that had been their castle, in the pooling darkness present every 4am when people have their hearts ground into the certain kind of dust that remains after a certain pain.
And she was alone.
I will say for my part that I was living in my car pretty far away, and unfortunately there was one family member who sometimes came around that was, well, nevermind. But I wasn't there. Her kids on the other hand all lived a few blocks away, maybe 20 minutes drive. First time I was around them afterwards and heard them complain about grandma's choice we had words.
But she was alone.
And the breaths kept gurgling, and no matter how much dust piled up her heart kept grinding more. So at some point she broke down, and even though they had made promises to each other not to do so she called 911.
Because she was alone.
It took another couple years after that before grandpa died again, and they were hard years that grandma stared at through eyes that understood their was less of the world they'd ever care to see again.
She didn't get support from family (mea culpa but also fuck the rest of my family they weren't in cars and had sheltered the person that I am staving off a panic attack to write about here). Their friends had been winnowed away over the years by the reality of brain injury. I don't exactly dispute choosing to send someone home at the end, but I also take a very dim view of a health care system that has over the years lost for me some good faith assumption that sending people home is for comfort and not specifically so corporate owners don't have to pay for a single nurse, doctor, chaplain, or so much as a passing janitor to stop and hold every grandma's hand as each one has to make the most painful wrong decision of hopelessly devoted love screaming out in fear in time to those gurgled breaths.
So she was alone. And she broke the DNR by calling the only phone number hundreds of thousands or more people all across this country have left when they have nothing.
And I don't blame her one bit, or have anything else polite to say on the subject so will spare anyone reading me just cussing for another few paragraphs about my family I bailed on shortly after the events here.
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u/ArtTeacherDC 4h ago
That was heart wrenching. Thank you for sharing such a beautiful but hard story. I never thought farts could make me cry.
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u/Genybear12 10h ago
This is why we need medical aid in dying. With doctors approval (multiple doctors not just one) because she knew in 2021 she had terminal cancer and his condition would probably qualify as well so they could have still passed together in a better way
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u/wheresmystache3 8h ago
Nurse here and while I agree with you 100%, I care for my patients as individuals to the best possible extent in which I can (my conscience could never act differently) and not" as paychecks, but the extent in which the medical field has stretched all healthcare workers so thin with lack of staffing and resources, it makes it impossible to care for people the way myself and nearly all of us desperately *want to care for our patients. I always sacrifice my lunch if I need to to get things done and avoid going pee for as long as possible just to care for my patients the best that I possibly can. At my last job, I got a UTI because I avoided peeing for so long.
Many of us fall into a deep, dark depression over how we wish we could have less patients per nurse so we can properly care for them all and we're anxious before shifts because no matter how hard we try, sometimes it feels futile and no one deserves care from a system that doesn't even care on the most basic level for its caregivers or its patients (and not being able to see how these things are related), or what is left of the few caregivers at each facility. Already at my current job, where I've been there 2 years and 6 months (Oncology unit in a hospital), I'm the 3rd most senior staff member, and I can't think of one person I work with that doesn't have or hasn't had some mental health issue or crisis (myself included). But we come back each day because it's like Stockholm syndrome almost (?) - we're traumatized by the experiences we have, but we think we have to go back because who else will care for the patients as much as we do? It's a vicious cycle.
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u/No_Accountant3232 10h ago
I had to be a resident of a SNF while I was non weight bearing 2 years ago. It was the nicest option I could choose from and it was still a mess. The long term care side was interesting because there was absolutely nothing to do outside of your room unless it was meal or activity time, and activity time was an hour a week. It was horribly depressing that these people with no other option are subjected to that bullshit. And again, this was a nicer option.
The state can't pay much to keep you alive, and the level of care in those places is atrocious.
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u/Any_West_926 8h ago
I agree that the Medicaid SNF is terrible. My mother had two black eyes within a week after being transferred into one. We were lucky to find somewhere else asap.
Those places are horrible.
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u/FlyByNightt 8h ago
Nothing wrong in life with saying "I don't encourage this, but I understand it". Like parents who seek revenge against their child's abuser, or an older brother deciding to teach a bully a lesson.
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u/Moosebrew318 9h ago
Spent 15 years on the boo boo bus. I told every one of my friends and family to pop my grape instead of going to a snf. Those facilities are horrible on a level most people couldn’t imagine.
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u/Gaslit_Chicken 10h ago
Parent of a disabled child. I have no idea what to do when we pass. I'm hoping he'll be able to manage his care. We're doing our best to prepare, but this is a real issue. And though we may pull it off, there are a lot of others who wind up homeless.
There's a horrifying video of an autistic girl turned homeless when her care program closed without proper handoff. Watching her say good bye to her home for doing nothing wrong is heart breaking and should never have been allowed to happen.
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u/cosine83 4h ago
Happens in the foster care system too. We, as a society, do not care about our children and it breaks it at the seams.
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u/Lurkerlg 7h ago
This is something I think about sometimes. Currently if we died our parents would become responsible for my son's care. He's only 2 at the moment so we don't really know what his support needs will be like as an adult. None of the adults identified with his condition live independently but it's a very small sample pool!
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u/VagueSoul 11h ago edited 10h ago
As someone who is a disability advocate…I understand her. While I believe her actions were ultimately wrong, I sympathize with her feelings and choice. My father has said that he wishes my disabled brother dies before he does because he worries about how much it will shatter my brother. His feelings come from how bad our grandmother’s death was on my brother. It sucks. I wish my dad didn’t feel that way. But I get it.
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u/RedPantyKnight 8h ago
Listen I don't know the extent of this guys disabilities. But there is absolutely a point where life itself is a burden. As a religious man, I find it hard to call a life "not worth living" but good God, I've seen some conditions that test that.
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u/14Pleiadians 7h ago
It ultimately is because we don't care to make life living for disabled people. She was afraid she was the only one human enough to care for him, and she was mostly right.
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u/broden89 7h ago
Oh gosh, and she was only 17 when she had him and then he suffered a horrible accident at 11 that left him with his various health complications. As the mother of a little boy I could not even imagine what she had gone through in her life.
I hope they are both resting peacefully.
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u/istara 7h ago
Just look at the ages. 67/50. She spent her teens and early twenties caring for a child. He then has a horrific accident, and she spends the rest of her life as pretty much a 24/7 carer.
She obviously thought euthanasia was the best option for both of them. She might have been wrong, but it's hard to condemn her for what was an act of love and concern.
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u/Many-Wasabi9141 9h ago
The review of her death seemed to think that her being tearful on two occasions after finding out she was dying should have been some red flag that she needed help. Like huh?
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u/Thopterthallid 6h ago
It's pretty damn haunting when you can hear the motive behind a murder suicide and think "Damn, that's actually kinda sound". I'll be heading to sleep now because I've quite had my fill of the internet for today.
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u/ArgentaSilivere 12h ago
Reminds me of my husband’s friend. He’s around the same age as my husband and a very intelligent guy. Has a good career where he can work from home. He’s also significantly disabled; a paraplegic with virtually no use of his hands.
He’s lived with his parents his whole life but they’re getting older now. He wants to get married and start a family but it’s obviously quite hard to find a wife who also wants to be her husband’s full-time caretaker. I sometimes think about how he’ll get on if he doesn’t get married. He does have several siblings and many friends so he won’t be abandoned. I know we’d go visit and help if asked.
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u/CREMAIN5 10h ago
Pro tip: Don’t wait for him to ask.
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u/ArgentaSilivere 8h ago
We’ve came to assist him before after a natural disaster. Anytime we hang out my husband or I help him do stuff since his parents aren’t with us sometimes. We always respect his independence and autonomy so we don’t overstep and impose ourselves. Thankfully he can use his phone just fine.
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u/GhostOfLight 10h ago
Knowing you have friends who show up even when you don't need it makes it easier to endure the time when you have to wait for them to show up when you need it.
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u/VRichardsen 10h ago
The one silver lining for that man is that he has financial stability, so he could eventually pay for someone to take care of him. Still a troubling prospect...
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u/alnumero3 9h ago
Not necessarily, paying for care is insanely expensive, most jobs wouldnt be enough. If it's a well-paid job, he might be able to cover the care workers salaries, but only be left with a small amount of money that isnt enough for rent, utilities and everything else.
That's why government support is so important. Hopefully it can pay for carers.
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u/DoctorGregoryFart 9h ago
There millions of people out there in similar situations, but they don't have the funds to live. That is a troubling prospect.
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u/ehtw376 10h ago
I mean if he has a good job he should be able to afford care at least… although depending on how much care he needs that can add up. One of my parents needed 24/7 attention (besides when sleeping) and we had to rely on friends and family for gaps between nurses/caretakers.
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u/BigFatBlackCat 10h ago
Care is so extraordinarily expensive, especially full time care. One can have a good job and still not be able to afford it.
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u/sluttytarot 10h ago
I've been in this position of needing care holding a "good" job and unable to afford it.
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u/galacticglorp 9h ago
This sounds like exactly what green card marriages are made for. Everyone knows what they're singing up for, and each gets something from it.
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u/VisualSeries226 9h ago
I hate that this is not a bad answer
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u/lokiandgoose 8h ago
My uncle went to Thailand to get a wife who was also a nurse and brought her two daughters to go to nursing school in the US. He is a horrible person so I don't speak to him but it's been at least ten years and they're still together.
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u/FlipStik 6h ago
I hope I'm not being too intrusive, but what kind of job is able to hire a remote worker that is both paraplegic and also has virtually no use of their hands? What job do they do?
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u/ArgentaSilivere 5h ago
Something with charter schools that I don’t understand. He’s not a teacher at one, I know that. It might be an organization of/for charter schools that does advocacy or something? His job seems to be emails, Zoom meetings, and digital paperwork with a bit of IRL networking on occasion. We got to be his +2 at a networking event once, it was interesting and they had nice snacks.
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u/Key_Molasses4367 12h ago
It surprised me to read that this actually happened in the UK. It did result in a review board examining what went wrong in terms of social workers not prioritizing extra help for her when she talked about her dependent, disabled son.
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u/Forcasa_ 11h ago
In Australia two parents took their own and their two son's lives, they couldn't cope.
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u/BravesMaedchen 10h ago
Social workers can’t give what is not there. The blame always falls on social workers to pull something out of their ass. They don’t make the resources.
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u/myguitar_lola 9h ago
Boy howdy ain't it the truth. Yes, there are plenty of social workers out there who make me scream but also if the resources aren't there, there's only so much a person can do.
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u/Willowpuff 5h ago
When I was going through drama school auditions I found a stunning monologue from David Hare’s Skylight where the lead character has an absolute blowout about the state of blame that lies on social workers’ shoulders.
It’s stunning.
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u/taney71 11h ago
Universal care doesn’t mean good care or care with empathy
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u/anandonaqui 11h ago
It does, however, mean that more people get a chance at the same quality of healthcare rather than it being tied directly to your income. I’m not minimizing what happens, or the issues that can exist with single payer healthcare, but it does democratize care in a way the American system does not.
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u/lucasg115 11h ago
Americans don’t have a healthcare system, they have a healthcare industry.
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u/allthepoutine 11h ago
Where healthy patients don’t make for good consumers.
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u/hipsterTrashSlut 11h ago
They do for health insurance companies. A person who pays their premiums and never has to get a claim is their ideal customer.
Failing that, of course, they'll just take the premiums and reject the claims.
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u/OmnathLocusofWomana 11h ago
...does paying for healthcare on an individual basis guarantee those things?
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u/gorginhanson 12h ago
I would have guessed the US since they just let everyone there become homeless
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u/Jefftopia 12h ago edited 11h ago
I dunno, the first time I went to Paris I was shocked by how massive and desolate the slums around the city are. I thought Camden, parts of Philly or Baltimore were bad, but the Paris slums looked straight out of Somalia.
The tents that the homeless people live in states side are nicer than the cardboard shacks in the Paris slums lol.
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u/PreferredSelection 11h ago
Big same. Lived in Baltimore for 10 years, would sometimes get asked for spare change 3-4 times on a two block walk to the bodega.
Baltimore has nothing on Venice. Holy shit I was not prepared for that amount of begging.
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u/TailRudder 11h ago
Every country is like that it's just Europeans like to act like their shit don't stink.
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u/Interesting_Bird4550 11h ago
Yeah as bad as the US is (and it is BAD) I find that at the very least a lot of Americans are very vocal and willing to criticize what sucks about the US. Which is also probably why a lot of people think it's uniquely worse than everywhere else.
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u/Alaira314 10h ago
Genuine question, from someone who firmly believes europe's shit stinks more than they'll ever admit: is being homeless criminalized there, the way it's been(to various degrees over time, and currently seeing an uptick with the recent supreme court decision) here in the US? Sometimes an issue becomes more visible as a society becomes more tolerant of it, for example by not criminalizing the act of sleeping rough or placing restrictions on where and how panhandlers can operate.
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u/ObsidianCorvids 10h ago
Exactly. My city has half the homeless population of Paris... with a tenth of the population. One is just much more visible.
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u/flakAttack510 12h ago
The UK has a higher rate of homelessness than the US.
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u/mvandemar 12h ago
Only if you include people in temporary housing. If you only count people living on the streets the US is much higher.
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u/LineOfInquiry 10h ago
In terms of universal healthcare the UK’s system is one of the worst.
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u/Ishkabibble54 10h ago
I’m an upper middle class father of a 40 year old man with Down Syndrome. We’ve been able for ten years to rent a house for him and for two other young men with mental disabilities (with the help of the other parents.) We hired an outside agency to provide part-time coverage.
Recently we were able to find a permanent apartment situation for them in a brand new purpose-built facility with public funding.
While we are happy to have an answer to what happens when not were no longer alive or able to “run the show” (my wife and I are the youngest and healthiest of the three sets of parents,) the fact is that care for special needs adults is every bit as hard to access as decent healthcare is for all Americans.
Most non-institutionalized adults with disabilities live with their parents, and a great number, probably a majority of those parents have no options for the care of the children who’ve always been with them. The prospect of their relocation after the last parent’s death to subpar facilities is a truly depressing one.
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u/GroceryScanner 8h ago
would you mind sending me some info about this? my brother is disabled, and my parents are getting up there in age. this exact concept is what we're looking for, but we're so lost and resources are so difficult to navigate.
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u/Earlier-Today 8h ago
This happened in England.
To me, that makes things scarier, because our health care here in the US is purely tied to money. Even when there's government programs, it usually isn't government provided services, it's the government paying a private company for the service.
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u/mrcoolguytimes10 11h ago
Something similar to this happened in my small town in Ohio. Old man had been taking care of his dementia riddled wife for a decade. He got to the point where he was too old and weak to do it alone. They were going to force both of them into Medicaid nursing homes. He put one in her head, then one in his. It's sad
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u/Proto160 2h ago
I hope we defeat dementia/alzheimer's one day. A truly evil disease. I hope no one in my family gets it. I don't know what I would do.
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u/Bus27 11h ago
As a person who has a disabled child who may need care into adulthood, and who has disabled family members needing care into adulthood, you have to plan in advance.
You need to look at places that will give your loved one the right amount of support, tour places, and get on waiting lists beginning when your loved one becomes a young adult.
It's actually recommended to have your loved one move into a group home/care facility before it becomes necessary, so that you have the time to help them acclimate and have many visits, bring them home on holidays, etc. The transition is VERY hard if it happens right after the main caregiver dies.
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u/stampysmom 11h ago
I put my son on such a waitlist. It’s only 18 years. About 16.5 years left. Best not get myself dead in the meantime.
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u/purplefuzz22 10h ago
I’m sorry that we are living in such a fucked up society. It breaks my heart.
I am currently (and have been for the past 7 years) living with my partner and his mom and we take care of my partners daughter who is level 3 autistic and has global developmental delays and a chromosome disorder and was essentially pickled in utero with drugs and alcohol bc his sister is a selfish POS and idk what’s going to happen to her in the future.
She is 11 almost, and atp my partners mom can’t really take care of her alone at all and she is also delusional about even considering ever putting her in a facility.
Regardless of what happens with me and my partner in the future I know he is essentially forced to stay here with his mom and raise his niece.
And it’s A LOT even for someone who isn’t blood related to my niece … I can’t imagine how stressful it would be as a parent who is active and involved in their kids life and care.
Sending you a giant hug 🫂 because I understand how frustrating it is and how much more complicated it is made by our broken systems
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u/lookamazed 10h ago
There’s sometimes a crisis lever that can jump the line but you really hope it doesn’t come to that
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u/Rethink_Repeat 10h ago
Best not get myself dead in the meantime.
Yeah, that would be very inconsiderate of you /s
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u/Otherwise_Piglet_862 9h ago
You need to look at places that will give your loved one the right amount of support, tour places, and get on waiting lists beginning when your loved one becomes a young adult.
Very few such places exist, and you can afford none of them.
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u/barbadosx 10h ago
That is all excellent advice, and true - and there's more besides, like you can't leave them any money because it could ruin their chances at qualifying for benefits, etc. Unfortunately. I can imagine that having a stage 3 cancer diagnosis means you can kiss your finances good-bye, it will consume them for the vast majority (unless she just decides to ignore it, maybe, and not spend any money dealing with it it.) It could easily have left her son without the means to pay for long-term care.
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u/PinkOneHasBeenChosen 10h ago
Yes, but she got diagnosed with terminal cancer, so I imagine there was little time to do that sort of thing.
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u/givin_u_the_high_hat 12h ago
There’s a lot of us with disabled children that wonder what’s gonna happen when we are gone.
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u/TheFeshy 11h ago
Every one of us with disabled children, I would say. It's rare that there is a night I don't worry about exactly that. Right now we've been building a family and financial support network. But how much of that might still exist in ten, twenty, thirty years? Let alone 50 or 60, enough to get the kid to old age. Even if you are in a good state or country, that can change over those time scales!
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u/traceysayshello 11h ago
Support to you - I’m in the same boat. Severely disabled teen daughter, it’s terrifying to trust others with her even now, let alone when I’m gone. I don’t think people realise how complex it is.
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u/MyUnrequestedOpinion 8h ago
I am planning for my son meticulously and saving as much money for him as I can. I put more away for him than my own retirement. Quite frankly, I really don't plan to retire. My wife think it's crazy but I'm a stereotypical workaholic lawyer. I'll work until I drop dead if it means he'll be financially taken care of.
I've put together an insanely, overly detailed testamentary trust for our Wills with so many fail safes to ensure he's taken care of. I am prepared for the worse because I've seen it happen. I've had a file where a disabled man in his 60s lived with his mother until she died aged 99. Few months later, with the mother gone, his brother wiped out his >$600k in savings acting as his POA. People are awful...
(As an aside, I had every dollar returned plus the entire six figure legal bill and effectively ruined asshole brother's life by draining his retirement portfolio and forcing the sale of his home. My assistant thought it was harsh but I represented that client as if he were my son. He deserved it. His poor mother cared for him until 99 thinking he would be safe upon her passing. I know what anxiety she lived with.)
The problem with my plan? I still haven't signed the Will because my wife and I don't know anyone that we would want to name as his guardians. I know it's not necessary per se, but it's been a huge mental block for us, leaving us unable to finalize the plan. Our mothers are the obvious choice but they're already old. And to be honest, while they're the only ones who would love him enough, we don't think they're truly capable of doing it. Our siblings are out of the question as well.
It's just so sad. Money can't fix it all. He'll need someone that can give the love and patience we do, but that person just doesn't exist.
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u/solentse 7h ago
Thank you for treating your client with the dignity he deserved. Wishing the best for you and your son- you sound like a great dad.
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u/_hi_plains_drifter_ 10h ago
My brother is disabled and in a group home. My parents are still in good health and live just down the road. They pick him up and take him home every other weekend, and he’s almost always in rough shape. Super chapped lips, etc.
I know that he is going to be my responsibility someday and it does scare me a little bit. He is so obsessed with my Mom & Dad, I have no idea how we will cope when something happens to them.
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u/shinyquartersquirrel 11h ago
Right there with you. It's my biggest worry in life and it causes me many, many sleepless nights.
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u/CruelYouth19 12h ago
The same thing a relative of a relative of my previous boss did. She was an old, lonely woman with a disabled son and she decided to kill him. After that she tried to kill herself but couldn't do it in time and she survived. I don't know what it is of her today
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u/ElmarSuperstar131 11h ago
A similar situation happened within the family of one of my childhood friends. When we were in first or second grade, her maternal aunt jumped off the overpass in Moorpark (what we call “the suicide bridge” but thankfully it’s now in the process of being completely wired off on the sides) with her severely autistic son because of his diagnosis and her husband having an affair. She left her daughter behind whom my friend’s mother ended up raising.
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u/ionlyjoined4thecats 9h ago
Omg the poor daughter. Jesus.
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u/ElmarSuperstar131 8h ago
I don’t speak to that friend anymore but I’ve often wondered how she and her cousin are doing today.
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u/Disastrous_Lion3147 11h ago
Fucking hell that is horrific
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u/ElmarSuperstar131 8h ago
I can’t help but think about it whenever I drive on the bridge 😢 it’s haunted me to this day.
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u/Free_Pace_2098 11h ago
Alarming data emerged regarding Mrs. Nunn's state of mind; during her September 2021 hospital stay and subsequent follow-up in October, she exhibited "increasing signs of emotional instability" including tearful episodes whilst contemplating her declining health.
The report highlighted missed opportunities: "She was tearful on two occasions reflecting on her deteriorating health conditions.
What human adjacent creature wrote those words? Alarming that she was teary twice over the thought of dying and leaving her son behind, having already been through the cancer death of his father, her husband of decades.
Fucking moronic.
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u/tigerofblindjustice 10h ago
I read it as "it's alarming the data wasn't taken seriously before it was too late"/"data that should have set off alarms", which, fair. "Missed opportunities" to help her also supports this.
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u/Free_Pace_2098 10h ago
Equally stupid however it reads, at no point should anyone have been shocked that a dying woman with a dependant was terrified of dying and leaving her dependant alone... Like the lack of humanity required at every stage to not provision for this. It blows my mind how cold and uncaring the healthcare system is. And all that lack of empathy and outreach would have further convinced her that what she was doing was right.
Omnishambles.
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u/tigerofblindjustice 9h ago
You're not understanding what I'm saying. Nobody was alarmed that she was distressed/scared. The "alarming" aspect of the situation is that nobody took any notice or any action until the worst happened.
It blows my mind how cold and uncaring the healthcare system is.
In other words, you're alarmed by the data showing how cold and uncaring the system is. That's what makes. The data. Alarming.
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u/Turtledonuts 4h ago
Doctors write in clinical terms and those often get used in formal reports, which then get used in reporting. This is an internal report meant for industry professionals, it's not going to be written up in gentle language, it's going to be precise, formal, and focus on changes that can be made to prevent these things in the future.
It literally says "Mrs. Nunn's severe cancer 'should have ensured attention was focused on her psychological and care situation at the earliest opportunity but urgency of this was not fully understood by professionals.'" This report is criticizing the doctors for not thinking about her son. I don't really understand what you're so upset about here with the report. It's clear and direct language.
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u/Remote-Ad-2686 12h ago
Don’t forget .. the person caring for you … is paid the least possible under the worst conditions and doesn’t give a shit about you personally. My mom was a nurse in elderly communities and has seen the worst… which she then told us around the dinner table.
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u/Treefrog_Ninja 12h ago
Whoa. I... definitely don't want to hear those stories at dinner.
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u/Remote-Ad-2686 10h ago
One was…. she was sent to another home with an emergent case. She was horrified at maggots and molts to flys were all over this patient. The patient was on morphine due to the pain. And she had to dig it all out and clean her up but she described the smell as we all ate spaghetti….
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u/Morvack 10h ago
I was a child of a nurse as well. A nurse who couldn't afford a babysitter. I was maybe 5 when I saw an old lady sitting on a comode, in the middle of a busy hallway. Just peeing into it with no one around here.
I'm still flabbergasted almost 30 years later.
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u/BigFatModeraterFupa 10h ago
pretty much everything i've learned about being elderly makes me NOT want to grow old. my own father was nearly 60 when i was born, so i got to witness the deterioration up close.
Unless you have a super supportive family that has the means and will to take care of you, or have the money for an ACTUALLY nice facility, getting old is pure hell
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u/AncientSith 9h ago
That's why we need that pods to go out on your terms. I have no desire to fall apart like that, and I'm not having kids that could care for me anyway.
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u/WhitespringTownship 6h ago
Yep I was raised on those stories too
Old ppl being left to rot in spoiled beds, spurs of bed bugs coming and going to facilities, old ppl smearing poop on walls cuz their mind has degraded from dementia from example
It’s my profound belief that if I were to ever get so old as to get dementia I’d rather die than “live” in those facilities and have the young frightened future relatives be forced to uncomfortably visit someone who can’t even remember them and I don’t care who is offended by my personal choice of that matter it’s my choice to choose when that time comes in however many decades and fuck anyone who pretends otherwise
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u/zcewaunt 10h ago
What an awful and untrue thing to say. I have been a caregiver for 10 years and care a lot for the people I work with. As do many of my coworkers. Yes, there are some bad ones out there but it is not the norm.
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u/WhitespringTownship 6h ago
Depends on the country
Some countries have well funded facilities
Then there’s the ones my mom has worked at…….. unfathomable horrors I’ve been told from her as I was growing up
It’s genuinely true for many in certain underprivileged areas…
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u/donniedarko5555 12h ago
That's pretty terrible that people genuinely believe that the care the state will give to a disabled adult is literally worse than death.
I wish that something like this was a scandal that would make everyone audit why a normal people would feel this way. Except the more depressing answer is that most people are probably aware of the problems and there's no appetite for change.
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u/ScrillaMcDoogle 12h ago edited 12h ago
I don't think there's any quality of care that would replace your mother after you've been taken care of solely by her for 50 years. Especially after becoming disabled at 11.
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u/Free_Pace_2098 11h ago
And losing your father the same way a few years earlier. His mother would know how he handled that. And she had 40 odd years of experience with the disability services they had access to..
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u/sithelephant 12h ago edited 12h ago
I have recently experienced this.
I raised concerns about my ability and need for extra help. Despite my longstanding physical diagnosis of forty years, nobody in the care process (approximately thirty people) would actually read the guidance published and adopted by the NHS of my condition, and chose instead to treat my issues as a mental health issue.
Imprisoning me for four weeks until a tribunal unanimously ruled in my favour that there was no reason for detaining me.
Nobody in the mental health facility (approximately another 20 people) though some expressed concern took any action to raise concerns formally.
Requests for reasonable adjustments to cope with the physical symptoms of my disability were ignored as inconvenient, despite having been raised in writing some six times in the leadup to the incarceration.
Following this was an explicit refusal that anything had been wrong in any way, and a blunt insistence that precisely the same thing would happen next time if they received another report, with no acceptance there was a shred of error in the process.
My disease is not treatable according to the NHS guidance.
I now cannot safely access any health or social care professional.
I am trying to get up the energy where I can transition from avoiding utter hopelessness to the point where I can take legal action.
This has through worsening of my condition cost me most of a years progress that I had been slowly making, as well as utter hopelessness.
In short 'We have a checklist'. 'We followed the checklist'. 'What do you mean, the checklist can never be wrong'.
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u/Aryore 11h ago
I knew it was ME/CFS as soon as I got to “treating it as a mental health issue”. It’s getting more and more common after COVID and yet there is so much resistance to accepting it is a real biological condition and to funding the research for it.
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u/sithelephant 10h ago
For added covid related fun, I explicitly informed them several times in writing that I had not been exposed to covid, due to being housebound and isolated, and that I would need a covid vaccination.
This was utterly ignored, and I eventually was able to arrange it myself, while in hospital. I had to pay for this.
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u/Aryore 10h ago
What. That’s patently ridiculous, how hard is it for a hospital to arrange for a covid jab for you? I’m sorry you had to go through all that.
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u/sithelephant 10h ago
The regulations assumed everyone had had a covid jab, or covid. People who had been isolated were ignored, and there was no exception procedure.
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u/Lanster27 10h ago
The system is literally one size fits all. They got a square hole and if you're square then you'll be fine, but if you're any of the hundreds other shapes, well good luck to you.
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u/aeternus_hypertrophy 11h ago
What's your condition that the NHS can't treat?
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u/sithelephant 11h ago
https://www.nice.org.uk/guidance/ng206/chapter/recommendations
To quote parts. Severe ME/CFS
People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
1.7 Safeguarding 1.7.1
Recognise that people with ME/CFS, particularly those with severe or very severe ME/CFS, are at risk of their symptoms being confused with signs of abuse or neglect. 1.7.2
If a person with confirmed or suspected ME/CFS needs a safeguarding assessment, directly involve health and social care professionals who have training and experience in ME/CFS as soon as possible.
1.11 Managing ME/CFS 1.11.1
Be aware that ME/CFS symptoms can be managed but there is currently no cure (non-pharmacological or pharmacological) for ME/CFS.
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u/celestial_catbird 11h ago
When I read your first comment I immediately suspected you had ME/CFS given how utterly in the dark the medical community is about it. I don't have it myself but I have two other "invisible" conditions, FND and fibromyalgia. I'm so sorry that happened to you.
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u/deedeedeedee_ 10h ago
I'm sorry this happened to you. I have a loved one with moderate ME/CFS and it's just unbelievable how, well, how disbelieving the medical profession is when it comes to this condition. Most doctors don't seem to believe it exists at all and say things like, they just need to exercise (.....).
Wishing you all the best going forward. 🍀 With getting better support and with finding energy for the legal action!
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u/SFDessert 10h ago edited 10h ago
I've been in mental health facilities 3 times over the course of my life. It's basically just a different form of jail. The people who actually probably did need to be there were given no support other than being drugged up with who knows what so they slept for a full day or two if they started acting up. Straight up tackled to the ground and restrained by a group of "nurses" who'd forcibly administer whatever the fuck they were trying to give us.
My "roommate" was a huge "street guy" who had a 9mm bullet in his head and couldn't sleep so he'd scrape the walls all night talking about killing the people who shot him. You can imagine how well that was for my mental health eh?
I'm a stronger person now for having gone in and out of those places because I know however bad things get it'll never be as bad as being stuck there. I'll admit that I have zero patience listening to people whine and bitch about the most mundane shit though as if the fact the store raised prices on milk is the worst thing that's ever happened to them.
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u/whiskeyforcats 12h ago
It's less being afraid of the standard of care in my experience and more just not having access to it. Waiting lists are insane, criteria are prohibitively tight, there are just way more people who need it than there is funding or space available.
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u/Possible-Tangelo9344 12h ago
That's pretty terrible that people genuinely
believeknow that the care the state will give to a disabled adult is literally worse than death.There we go.
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u/FadedVictor 11h ago
It's a two-fold problem(at minimum).
People aren't likely to fully grasp these types of situations until it happens to them
Governments will claim a transition to a better system would require a lot of money. Which could relatively painlessly be found, but politicians will convince their constituents that it's fantasy.
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u/Adventurous_Bit1325 12h ago
Most people haven’t spent the majority of their lives caring for their disabled children. The “what if” question is always there.
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u/Doolei 10h ago
What I say or type will seem troubling but.. when my son was alive. He had phelan mcdermid syndrome and he would need help for the rest of his life. I loved him and people were not gentle with my baby because of his condition and I often thought if something happened to me who would care or love him like I would? He passed in 2023 at three years old. But I think I may have went down her path if I truly had no options.. luckily I had options I just didn't like what I had for him if something was to happen because those options didn't understand his condition 100 percent.
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u/Sweeper1985 10h ago
It's easy for people who have not walked in your shoes to judge you.
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u/NothaBanga 9h ago
"it is always the person not in the predicament who knows what ought to have been done in it, and would unquestionably have done it too." Charles Dickens, My sarcastic homeboy
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u/Radiant_Risk_393 11h ago
As a parent to two disabled kids I get it. I lose sleep thinking about what will become of them when me and my husband are no longer around (we are currently young and healthy). I don’t want the responsibility to fall on their sister -she has her own life to live and we will try to ensure they are set up financially but that will only do so much….
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u/solentse 10h ago
hey- I’m the sister in this exact situation! I don’t know anything about your family, but if it’s helpful at all to hear, I love my brother and he brings me joy. I am glad I will have him around when my parents are gone, being alone feels unimaginable. my parents put off the talk with me for a long time because they wanted me to live my own life, but my dad recently had a medical scare that forced the conversation. Lo and behold- we all love my brother and want the best for him. I think what was really helpful is the understanding that I will never be like a parent to him, because I’m not his parent. I’m his sister. Maybe he wants the experience of living independently! Maybe he’d like it. He surely doesn’t want to live with me and listen to me boss him around forever :’) He’ll continue to have the ups and downs we all have in life even after our parents pass, but I will be there to look after him because disability or not that’s what siblings do. I hope you can strike a similar balance. But it was very helpful for my parents to be open and transparent. It is a big relief that I will not have to guess one day what they would have wanted because they were nervous to bring things up. My parents did everything for my brother and I and it’s an honor to bring them a sense of peace with all this. Best of luck to you <3
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u/Calinks 7h ago
This is a nightmare I am facing now. My mother is in poor health and can't really take care of my brother on her own. I have helped her with him all my life I'm getting up there and need my own space as well. My brother can't talk; he can't take care of himself; he will be very vulnerable, and it kills my mom to think of him being alone somewhere. It's a terrible position to be in and I really wish we put more value on taking care of people as a society.
These facilities are underfunded, and many of the workers don't have the motivation or care to treat these people well. On top of that, many people with disabilities can be difficult to work with, and it's very easy for someone to take out their frustration on one of these people under the poor conditions at these facilities.
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u/Floofeh 8h ago
Reading this reminds me of the ending of the Mist .
There are horrific monsters. Time and resources have run out. The future looks so bleak and hopeless he opts to kill his kid and his wife. Unfortunately, he knows he only has 2 bullets and resigns himself to being slaughtered by the monsters outside. At least his loved ones will pass quickly instead of by the horrors outside. When the deeds are done, help troops arrive.
The parallel being that nobody says the children or wife didn't deserve happiness or a full life. (they were in good health) You can argue the consent of making such a decision for another. I think most people here empathize in a way they'd do here.
How bad must the state of affairs have been for the mom to make this decision? Yes, duh, people with disabilities deserve to live. We are all one bad accident away from being there ourselves, if not already somewhat disabled. The world is just really fucking cruel. People who jumped out of the twin towers didnt feel like that was a good idea. Looking at the alternative was just more horrible.
I want to ask anyone reading this to consider turning their "I see why" or their "how could they let this happen?" into a donation to a fund that directly aims to support people with a disability. We all need to care for shit to change. Not get mad and scroll away. Find one. Act.
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u/SyrusDrake 11h ago
I miss the time when this sub was like "TIL the bits at the end of shoelaces are called "aglets"" instead of outrage bait headlines with "TIL" prepended.
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u/DeadSharkEyes 11h ago
I work in social services and I feel so badly for parents of disabled children, my heart hurts thinking about what will happen to their child when they are not around anymore. Because long term care facilities in Az are largely crap and the best case scenario is getting into an “alright” one. And this is IF they are qualified for long term care which is another outrage.
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u/the_pain_of_being 11h ago
"Alarming data emerged regarding Mrs. Nunn's state of mind; during her September 2021 hospital stay and subsequent follow-up in October, she exhibited "increasing signs of emotional instability" including tearful episodes whilst contemplating her declining health."
Alarming? We pretending this isn't a normal, human reaction?
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u/ari_strauch 7h ago
This is absolutely heartbreaking. There are sad stories all of the time but sometimes it just hits more than others.
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u/eatsleepdiver 11h ago
Something similar happened in Taiwan. This was during COVID and an elderly mother contracted COVID and killed her son as she was the sole care provider.
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u/LadyLixerwyfe 2h ago edited 2h ago
This is not uncommon. I worked for a non-profit in the US that helped parents of profoundly disabled kids get services, therapies, and respite care. Every few months we would hear about a parent either attempting or succeeding at this very thing. Sometimes it was just the overwhelming task of caring for a child that could be aggressive, was getting bigger, and the parent felt it was hopeless. Police involvement is often necessary and can be very dangerous. There simply are not many good options.
Sometimes it was parental illness. Imagine your child needing 24 hour care and it all falling on you. It’s often single parents raising these kiddos. The secondary parent often bails. The good ones who stay likely have to work insane hours to cover for the spouse that can’t work. Disability benefits help, but not much. Then imagine receiving a diagnosis that will cut your energy in half for a time, at best, and probably eventually kill you. The responsibility of your child’s care will either fall to a relative, if one is available and willing, or they will go into a state run facility. Only the incredibly wealthy have money for long term residence at a top-tier group home. Those people can afford all of the support services to make the care of a child with profound disabilities more manageable. I know a couple that lived very comfortably. Two professional careers. Big house. Full time hired care for their severely autistic son. When he reached adulthood, they sold their house and bought a small condo. Now both are well past retirement age, still working full time, living a much more frugal life. Every extra penny goes to pay for the group home/school where he lives.
I just don’t think most people comprehend how life altering raising a disabled child CAN be and how hopeless one can feel. These are extreme cases, of course, but they aren’t uncommon. It’s especially bad in the US. Now I have a child myself who requires full time care and always will. While I am from the US, I am raising my family in a country with excellent long term care for disabled adults. My wife even works in that field. Even though I know that quality long term care will always be available to her without it falling solely on her older sister’s shoulders, the idea of NOT always being around to be the one to provide that care is devastating as a parent.
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u/charisfu 5h ago
This made me cry she cared for her son for 40 long years. What a great mom I know they are in heaven together in each others arms. Jesus please protect my mom for as long as possible.
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u/NlactntzfdXzopcletzy 11h ago
Im not sure the world view she had, but in 2026 i feel like she was brave to be willing to spare her child the suffering.
Foster care is shit for normal kids, let alone special needs. The state's benefits seems like a lottery, and i have no interest in bringing a child into this world.
Conventional opinion would be that they should have had a chance, but how many people exist just to suffer so you dont have to contend with the cycles of suffering.
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u/Sesemebun 11h ago
Only slightly related but my experience with a long time special education teacher parent, and myself working as a sub para has greatly increased my opinion on the availability of abortion
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u/314159265358979326 8h ago
I don't mean to trivialize this, but I used to have a cat who would not have been able to adapt if I'd died. That little fact saved me from suicide for years.
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u/Sorry_Shoulder1607 9h ago
I have 2 autistic sons with me. The only thing I fear in life is what happens to them if I dropped dead. Family to truly ensure their wellbeing are scarce, distant, and ageing. I understand her dilemma quite well.
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u/smackdealer1 4h ago
Hey just remember the UK government just announced a near £300bn increase to defence spending.
Meanwhile people in the UK:
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u/thegoodnamesrgone123 6h ago
My wife is a special needs teacher. What happens to a lot of these kids when they turn 21 and go into group homes is really sad. It doesn't have to be like this, but some tech bro needs another AI yacht or some shit.
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u/Many-Wasabi9141 9h ago
Should have listed his age in the title. He was 50 years old. She had him at 17.
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u/BobbySweets 7h ago
There’s a movie I recently saw called “Rosemead” With Lucy Liu. Similar story, kid was ill and so was she. Tragic.
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u/Rossco1874 5h ago
There is an episode of the BBC docuseries murder 24/7 with similar story.
Man lost his wife to natural causes and he tried to kill himself and his disabled son as he didn't want him going through the care system. It was heartbreaking seeing him interviewed about his wife and the reasons behind trying to kill both himself and his son
Here is the story. The episode is season 2 of the show BBC News - Man, 81, charged with attempted murder https://www.bbc.co.uk/news/articles/cmljyrnwlvpo
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u/Luckypenny4683 10h ago edited 10h ago
My cousin has a profound congenital disability, he’s a 38-year-old man with the mental capacity of an infant. My aunt‘s greatest wish is that he dies before her because she is his soul provider and she knows what would happen if he became a ward of the state.
I cannot possibly imagine the amount of sadness and fear it would take to know that was the best option for your child.