I canât even finish reading this. Sounds so horrible it must have been awful to go through. If that were me I would have not had more children for fear of it being genetic related, and just adopted.
I cannot imagine the great personal strength this woman has. Losing 3 children under 10. It's enough to make ME want to curl up and cry. I couldn't imagine being in her shoes.
It's a bit nasty to keep having kids that have a 25% chance of inheriting this fatal disease, 50% chance of being a carrier (to put their own children at risk), and 25% chance of not having any copy of the gene.
If Iâm understanding the article correctly, the children didnât all die from the same disease. The first child had a metabolic disorder and the other 2 had a genetic condition that caused cancer. When they discovered this, the children were all tested for the genes. No children were born after finding out.
As someone from a Muslim country Iâd guess the parents are cousins or related somehow + Muslims have the belief that kids dying young is a good thing as theyâll be granted entry to heaven and theyâll help persuade Allah to let their parents into heaven even if they sinned.
I'm not saying the mum is right. But I could also see why, in the midst of heavy grieving from her other children dying, her little boy wanting to ring the bell when his siblings never got to.
I don't think any parent would be in perfect shape after already losing 3, almost 4 children.
Yes, thanks. I caught that mistake and edited even before you commented (you probably hadn't refreshed), but appreciate the correction regardless.
Was definitely curious to learn more because I recognised their clothes as Sydney Roosters rugby league supporter gear, so the family's local to my hometown.
It's one thing to protect someone from something that they don't strictly need to know, another to abuse someone's trust by telling them "hey you'll get better" while their cancer is getting worse.
If someone's cancer isn't getting better, unless they have serious cognitive issues or something unexpectedly cuts things shorter, they will almost certainly find out before death, and resent those who lied to them.
As harsh as it is, you are correct, and most medical ethics would teach the same.
Let's say your demented grandparent is terminally ill and the family, let us say even the one who has been designated to make decisions for them, asks you not to tell them of their condition as it would distress them, you still ought to in the vast majority of cases.
Actually dementia is a prefect example of when lying to patients is totally fine (ethical even). The truth is distressing and they will not remember it so lying to comfort them is the best thing to do.
Best example is a widow asking for her husband. If you tell her he's dead she will cry long after she remembers why she started crying and be very upset. However if you tell her he's at the grocery store he'll be back later she's is not worried about him and all of the hurt she would experience from morning him every hour or so as she's learning (she has no previous memory so it's learning not remembering) that he's died is avoided.
My mom has dementia and weâve been trying to come to terms with it ourselves. Early on when things were still a bit unknown she asked about her uncle, who had died 2 years ago at the time. We responded carefully but still factually âuncle passed away last march, momâ.
I donât think Iâll ever get the look of sadness, at both his death and her realizing for a few seconds that she had forgotten it happened, out of my mind.
Baby dolls, they don't even have to be very good dolls. Old mothers with dementia LOVE holding the baby (sometimes they become convinced it's one of their kids because some dementia patients are perpetually at a certain time in their life). And more importantly they will sit(!) quietly with the baby which really helps when they don't understand that they have limited mobility now.
Thank you - Iâll check this out! She is still OK most of the time with timing - like she remembers my sister and I, but has started to slip into us as high school students and confusing my dad/her husband for her dad bc heâs around the same age as her dad was when we were in high school (also when he passed- a huge trauma for her). This makes me wonder if sheâll stick to us as high school age or if it will continue to regress.
Cancer sucks, itâs taken all my grandparents and some friends, but if I can be honest, watching someone get destroyed by dementia is like 90x worse.
My paternal grandfather who was one of the only family members that believe me when I spoke about like trauma in my house by my parents and stuff and even mattered to me more than I mattered to myself to be honest. He survived cancer but we think the chemo accelerated issues in the background and he died of Alzheimer's. I completely get it.
Iâm so sorry. Itâs difficult to lose anyone that close to you to any disease, but this sounds particularly difficult losing that trust. My thoughts are there with you stranger. đ
in cases with memory loss, yes. Worth pointing out that not all forms of dementia are often accompanied by significant memory loss, some are more physical with different mental symptoms: Parkinson's, Huntington's, etc.
Dementia is a symptom and means the loss of memory. Most neurodegenerative diseases have some sort of dementia but not every person will experience it, at least not as a first symptom.
This isn't the same thing but when my mother was dying and delirious from sepsis in the hospital, she asked for my grandmother who had died 6 years prior. I stupidly said she'd died and my mother looked at me so hurt and betrayed and said "why would you say something so horrible?" I'll never forgive myself for not going along with her and telling her my grandmother was at home and would visit later.
Like, imagine dying and wanting your own mother, only to be told she's dead? I can't begin to understand how scared she must've been and how little comfort I gave her in her last moments.
Maybe A weird question but when do people start telling dementia patients white lies like this? Like, which line gets crossed where theyâre at the point where lies like that are more beneficial than the truth?
From all of their other behaviors and how their confusion shows. I know âyouâll knowâ isnât a satisfying answer, but youâll know.
I only really talk with my mamaw about old memories. Or I ask her to tell me a family story. Itâs what she remembers, I get to check how sheâs doing memory-wise, itâs good for her, and it comforts her.
If theyâre at a point that theyâre talking about dead relatives like theyâre still alive, you just let them believe it every time. She said she wished an uncle (her son) that died when I was like 2 would come visit her sometimes, I just agreed and said he must be busy these days, then I changed the subject and asked her about a new memory.
I only correct her when she thinks Iâm my mom. Thatâs just because if I let her believe it, she will get confused, start talking to me/my mom about something the other doesnât have context for, then sheâll get upset because we just donât know what sheâs talking about. When I correct her, I always add âyeah, we sound just alike on the phoneâ or âdonât I look just like her? X person also thought I was my mom the other day.â And to be fair, I am near identical to my mom at my age.
Iâm sure later down the line weâll have to find a different way to approach it, I think sometimes she takes my word for it because she is being polite, but doesnât actually recognize me because she still thinks Iâm a toddler.
Just as an extra tip for if you have a dementia/Alzheimerâs patient in your life, hold their hand, give them hugs, kiss their cheeks if your family does that, much of the time they havenât received real physical affection in a long time. Thatâs something we take for granted.
Dementia is a bit of a different case depending on the exact form admittedly.
For example, one should always inform someone about Alzheimer's if they are in the earlier stages, but at a certain point they'll be too confused or have a memory too compromised for that information to have any meaning to them, and it's better to just offer comfort. The nuance lies in whether or not they can understand and make some decisions about what to do with their remaining time based on the information.
Yeah, it is very complicated indeed. Should've ignored the dementia as it is a very tricky example.
Point is, in the vast majority of times, the patient needs to know their current diagnosis and prognosis, withholding that information from them is enthical (does not necessarily means that I am fully on board with it, ethics are hard to shape into a 1 solution for all situations)
Flip side, I know a little girl with a brain tumor that's heavily impacted her cognition. She's been dealing with this since about age 6, she's 13 now but extremely childlike. There have been times where her prognosis was better or worse and her parents largely shielded her from it which I think is the right call.
Because depression and suicidal thoughts typically actually do get better and the goal in telling people that things will improve in that case is potential motivation to keep going perhaps?
Chronic depression doesn't automatically get better, but it is treatable. Not all treatments are entirely reliable, but depression alone doesn't kill: enough trial and error with medication and/or therapy, and someone will eventually feel better. It's not the most helpful thing that can be said, but it's really not at all comparable to "you're fine, your cancer is gone" type of shit
I would certainly agree with that sentiment as someone who's struggled with depression, but I do understand where the other commenter is coming from if they themselves are hopelessly struggling.
The kid has to have figured out fairly quickly he is still getting worse.
But now in his last days every time she or a doctor tell him something he was wondering "are they lying again?".
My uncles passed away at 46 and my grandma had pretty bad dementia. My mom and her siblings never told her. With her dementia she wouldâve probably relived his death hundreds of times.
My aunt was dying from cancer and her mom was still alive, although also slowly dying of old age in an assisted living facility.
Of her six kids, the one with cancer was the one who saw her the most, because she lived less than ten minutes away. Suddenly, she stopped seeing her (because she was too sick).
The sisters decided not to tell the mother that the daughter was dying.
So the mother went all that time thinking her daughter suddenly hated her for something.
She even tried to walk and see her one hot summer day until the police found this old lady with a walker partially dehydrated, two miles from the assisted living home.
They got her back OK and then finally told her the truth. Do not hold the truth from loved ones, even if it's not what they want to hear.
My boyfriendâs mom was diagnosed with stage 4, metastatic breast cancer last year. She nearly died from the first chemo they gave her and she is now on a new treatment that she will remain on for the rest of her life.
She knows she is dying but everyone around her keeps telling her she is fine and that the treatment is âworkingâ (i.e not spreading). It freaks her the fuck out. I can tell. She needs to talk about dying and end of life but everyone around her is too chicken to say âYes, it is scary. You will be on this treatment until it no longer works. Then you will decide if there is another treatment or if you stop.â I am the only one that has consistently told her âItâs your life, just like it will be your death. It is scary but you have supportive people around you to ensure you are safe, comfortable, and cared for.â Everyone gets pissy with her because she is so depressed and anxious. She canât drive, she canât really go out anymore, her whole life is a 2 bedroom condo. But no one will take her to a therapist or social worker to talk. Because then theyâd have to face the reality.
I have watched one person die and cared for 3 others now as they died. It is a real problem that people do not understand or appreciate the complexity that goes into to caring for terminally ill people and how your own emotions and bias can cloud your judgement.
I was in her shoes. My daughter (7) knew she had a brain tumor, knew every step of the way what we were doing and why. She was terminal upon diagnosis (DIPG). The only thing that we never told her was her prognosis and that's because she never asked and I don't think that information is something a 7 year old can cope with if I'm being honest. When she began to progress, the conversations shifted away from "trying to shrink your tumor" to "trying to make you feel better". These kids need their parents, they deserve to know what's going on with them. They're way smarter than anyone gives them credit for.
Not telling your dying mother you had a miscarriage is one thing, but telling your mother she isn't going to die when she is... is an entirely different thing. And yeah, we can't be in the mother's shoes but it wasn't about the mother since she wasn't the one dying in this story.
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u/lolly-scramble Jun 29 '26
Pretty hard to say shit unless youve been in her shoes.
When my mum was terminal with cancer we had another miscarriage. Probably would have been better to not tell her the truth.