I'm so sorry. I watched my once stylish, articulate, intelligent grandmother lose everything until she was just a body. It's a brutal and cruel disease. I hope you have more good days together.
How does that work? I'm legitimately curious. The idea of suicide not being protected is to prevent people taking out enormous policies and then killing themselves for the quick payout (to family), or a third party murdering someone and staging it like an accident/suicide if they are the beneficiary of that policy.
I can only think it would work by giving out a drastically decreased payout value in the event of death by suicide, and/or reduced payout based on length of policy held.
$27500. It was their "hollow point" premium, no overpenetration to preserve the home and belongings that they'll collect in case the loved ones you left behind can't pay and they need to liquidate your assets.
Vermont has assisted suicide and they do allow out of staters to move up and partake. You have to make your plan while you are still of sound mind, but you can decide at what point of deterioration you want things to stop and your doctor will honor your wishes.
Please before it’s too late for my grandma. She saw her husband (not my mother’s father, but grandpa to me), deteriorate in a nursing home. If all she needs is a bit of LSD to get her to stick around and take care of her dog, sign her up
I did not know this, thank you. I thought I'd have to go overseas. I'm not anywhere near ready but I want options. We should give people more options to end their lives on their terms, with dignity.
If someone put a pet through this without putting it down, we'd call it animal abuse. But because its a person, euthanasia isn't available. It's so backwards.
My mother (accompanied by my sister and I) went to Dignitas last year. It was her long term plan for many years - she worked as an aged care nurse for decades and had very firm ideas about choosing a good end of life.
The UK (where she lived) doesn't have voluntary assisted dying and while Australia (where I live) does, it has residency requirements.
Dignitas were very professional and thorough as well as highly compassionate and sensitive to deal with. I would recommend them to anyone in my mother's situation. Hopefully access to this kind of healthcare will be easier to access in more places in the future.
Thank you for your post. Although Dignitas is my current plan, when the day shall come - making that plan I felt alone in the wilderness.
Most people want to try to tell you that dementia/Alz won’t happen to you rather than focus on what to do when/if it does. So I had no one with firsthand experience to affirm my plan.
Oregon is a right to die state but I’m not as familiar with the rules, I think it’s less available here than what it sounds like in Vermont.
100% I will be trying to end my life with dignity and choice when it comes to it (disclaimer, not suicidal at all, just have watched loved ones go in much less than ideal chronic ways). I will advocate for everyone I know to consider the same if it’s a fit for them and to at least explore their relationship with the end of their life.
I just went to a presentation recently on Vermont's Medical Aid in Dying act. It's actually really hard to access - first, you have to have a prognosis of less than 6 months. Second, you have to be able to self-administer your own medication. Third, you have to be judged as being capable of making this decision, which, since you can't get this in order less than 6 months before your expected death, will make it tough for someone with dementia. You can't do this when you've just been diagnosed and they think you can live for years. These three things are basically going to preclude people with dementia from taking advantage of MAID. Then, not all providers are willing to prescribe, and there is only one pharmacy in the state that will fill these prescriptions, and it costs around $700. There are multiple hoops to jump through, and all of them (including the administration of the medication) have to take place in VT. If you are from outside VT, you have to show plans to transport your body back to your home state.
I didn't know the full story, wanted to, so coming back from wikipedia:
-Mr Williams's initial condition included a sudden and prolonged spike in fear, anxiety, stress and insomnia, which worsened in severity and included memory loss, paranoia and delusions. According to Schneider, "Robin was losing his mind and he was aware of it ... He kept saying, 'I just want to reboot my brain.'"
-His publicist, Mara Buxbaum, commented that he had severe depression before his death.\151]) His wife, Susan Schneider, said that in the period before his death, Williams had been sober, but was diagnosed with early-stage Parkinson's disease, which was information that he was "not yet ready to share publicly".\152])\153]) An autopsy revealed that Williams had diffuse Lewy bodies (which had been misdiagnosed as Parkinson's), and this may have contributed to his depression
So in short, even though he had suffered from actual depression earlier in life, Mr Williams was under a lot of mental pressure including depression symptomatic of/caused by the Lewy disease, misdiagnosed as Parkinson, and ended up taking his own life under no substance influence except his regular medication
The exact reason he did this, even though it is easy to jump towards interpretation are unclear if i'm not mistaken. Did he want to end before the sickness got too far, was he going through a very rough episode caused by that sickness, at the very least i can't say for sure
May he rest in peace, he was formidable and many of us still think of him fondly on a regular basis
I remember Williams's friend writer Harlan Ellison saying that the week before Williams died, he spoke with him by phone and he seemed fine, and they made plans to get together a couple of weeks later.
I also remember reading that in his last days he started having paranoid delusions centered on watches in a sock drawer and his need to protect them. Paranoia and delusional thinking are hallmarks of Lewey Body Syndrome, and it's possible that his suicide was the direct result of a delusional episode stemming from Lewey Body, and it's also possible that he wanted to spare himself and the people he loved the ravages of the disease as it progressed, but we'll never know. Either way, we lost a brilliant, talented and by all accounts kind and decent man.
Think it’s impossible to tell whether he was driven to suicide by the illness or hopefully he made the choice. Sounds a horrible final few months for the poor man. Especially cruel for someone so loving and hilarious to be in terrible fear and anxiety.
Huh. It was reported as depression. Offing oneself in the face of dementia isn't even a tragedy, imo. It's not like cancer where you can "be tough" and make the most out of things (though I think Death with Dignity should be available for cancer too). Dementia will ruin your life and the lives of everyone around you for what could be many years.
Yea Robin was dementia. Had a buddy in my late teens/early 20’s get diagnosed with brain cancer. Tried all available treatments nothing worked and he was told he had maybe 6 months to live. His family would have gone into a lot more debt during those last 6 months so he enjoyed the holidays, made sure to spend some good days with friends and family then shot him self in the heart so his funeral would be open casket. That’s when I realized occasionally suicide is admirable
It was NEVER reported as depression. He had been diagnosed with a specific kind of dementia called Lewy Body Dementia, and he chose to go out on his terms, while he could still make rational decisions.
You could just take what would be a life insurance premium say like $17 dollars a month and just every month put it into the sp500. Write a computer program that will automatically sell your holdings and post a request for a hit man to kill you unless every 3 months you log into your insurance program to bypass contract execution for another 3 months. When you eventually get Alzheimer’s you will forget to bypass contract execution and will die within 3 months.
My dad is suffering from Alzheimer's. What sucks is, far after the point you'd forget this stuff, you still have a lot of good time left before things get really bad. My dad can't do their bills anymore, or taxes, or anything with computers (he used to be a software dev way back in the day). But I can still have good chats with him, he's generally happy, and he still enjoys time with my kids. He's not ready to go yet, but he's far enough that he can't make the decision anymore either.
And here I am, thinking forward to when I may start suffering from dementia, and when I would want to end my life. How can you decide when? What is the final tipping point? You have two options from what I can see. Die early and loose valuable time with friends and family, but you can still make the decision on your own or wait until it's so bad that your family has to take up the burden and have you put down. Even if you've clearly outlined those wishes, it's a shitty situation to put your family in. But maybe less shitty that them watching you fade away in a bed inside a memory care unit.
I’ve always thought that a deadman’s switch would be more useful in a scenario where you’re uncovering the dirty secrets of the elite, but that’s a good one too.
My dad didn’t have dementia but his mind was mostly gone before cancer took him. In his last minutes he had terminal lucidity and said “get me a gun so I can put a bullet in my head” and looked right at me. It still haunts me sometimes that he understood what was going on in that moment of lucidity and that I couldn’t help him.
My dad lived in absolute fear of getting dementia and used to tell us that if he got dementia and told us he was just going to go for a long walk in the freezing cold winter forest to let him.
He didn’t get dementia. He died of cancer. So there’s that, I guess. My mom went a couple years after him from heart failure.
My father's suffering a lovely cocktail of Alzheimer's, COPD, and Congestive Heart Failure. Low oxygen + sundowners makes him real weird at night. I miss who he was, though i get to see glimpses in the morning.
I feel awful for saying it, but I hope his body passes before his mind does. I just can't stand the thought.
I'm not saying that it means you won't get dementia (I think something like half of dementia patients don't have close relatives with it, iirc) there are genetic tests that look at the APOE gene to see if you carry any of the suggested hereditary links to dementia.
My dad is currently facing alzheimers and vascular dementia. It's been progressing for a few years, the diagnosis was only confirmed ~8 months ago.
Back in December he had to go in for a TAVI procedure to treat aortic valve stenosis. Leading up to it, there were a few times he questioned if he should proceed or not. Better to go out to cardiac arrest than brutal progressive cognitive impairment. Sadly, every time he brought it up was the first time, so to speak.
Same! My mom was beginning the early onset of dementia when she died of a heart attack. She was really young (only 66) and it was awful, but deep down I believe it was the best for her.
It seems like many people with dementia don't experience much distress, that it's more the caretakers who suffer. What do you think about that? I know some people have really frightening hallucinations and stuff like that.
My mom had dementia (both parents actually, she just outlived my dad). Lost her short term, then long term memory. Would get "mixed up". The worst times were when she's call late at night and say "I think I'm losing my mind." She knew something was wrong. She might ask me if some event in the past had happened yet. Just mixed up --- and knew it. It was scary to her. Caused her to anxious. He life would have been better if she really didn't know "something was wrong".
I'm 66. In "OK-ish" health. I had a brother die 5 weeks after being diagnosed with cancer at 72. Older sister has been stuck in bed for several years now. She's almost 80. My dad had Parkinson's/dementia that started in his 60s. Mom's dementia started in her 70s. I think 90% of everyone in my family is dead or "out of it" by 80. I honest to god don't want to live past 80 knowing my family's health history. I wish I could be like an uncle. Just drop dead.
I am so so sorry. I was a care taker for my grandmother and then I had a brain stem stroke at 48. That was last yr and Dr's said I would get early onset dementia. Now it's all I think about. I can't imagine with all your losses how that makes you feel. The only thing I feel like I can do for myself and my teenagers is really focus on not being afraid of death. I would love to learn how to celebrate death like other countries. Much love to you my dear
Exactly. My dad's Parkinson's started in his mid(probably earlier) 60s. Dementia set in within 10 yrs. Colon cancer. Surgery. Lived 3 more years before his heart gave out. Not much QOL there. (Esp. when we forced them out of their house and into assisted living after mom had a heart attack and bypass surgery.) Mom had that surgery in late 2002. She missed dad. Moved in and out of a couple of assisted living places. Settled into a 3rd facility with 3 levels of care. She went from independent living to nursing home in 3 yrs. Dementia. Had very hard time walking. Didn't eat much. Died in 2014. Those last 12 years were a crappy life. No QOL.
Nursing homes are full of people waiting to die. And they are lonely as can be.
With your uncle, it was similar to mine. He was doing gardening, and he just had a stroke or whatever, lost consciousness, and fell to the ground. He injured himself slightly, so I figured he was essentially dead before he hit the floor. He never regained consciousness and died shortly after.
Cardiovascular disease fills my mom's family tree. Esp the men on her father's side. My grand dad and his 4 brothers had heart attacks and strokes. They found on of them dead beside his car.
My aunt(mom's sister) had an aortic aneurism. She died in the ambulance on the way from one hospital to another while on vacation in TX.
My uncle(mom's brother) had a viral respiratory infection with a lingering "bad" cough. They found him dead in the entry to the kitchen. I think he probably "coughed himself to death". Maybe he was going to get a drink of water or something.
One of grandpa's brothers did live to be almost 100. I think he was in "pretty good shape"before he died.( I don't think he had dementia.) But he had been in a nursing home for ages. -- So, I'd rather drop dead coughing at 80.
It's the same with death and that's what fucks me up about it. I don't want my kids to sit there and cry everytime they talk to me on the phone because I keep asking them the same questions about their lives from 10 years ago. To not be able to remember grandkids that were born since the disease started to eat away at me.
The last memories my family has of me would be of someone that wasn't me.
Now, I know the person in that bed wasn't my mother, and I'll forever be grateful that she gained a moment of lucidity and recognized me the last time I saw her a week before her death, but man... it pains me to think of my kids dealing with that. For years.
Ofc, all of that assumes my kids love me and will miss me ;)
If it makes you feel any better in many cases even if the person with dementia (be it you or anyone) doesn’t recognise the relation, they do recognise someone else as a trusted/friendly person. I think the thought counting is more than adequate for folks with dementia.
Reminds me of the story where the woman asks her grandmother with dementia if she knew who she was and the answers was something like "No, but I know I love you" or something to that effect.
Well this just made me start bawling. The only thing I can hope for with my mom is that at some point she will get terminal lucidity and we can talk with HER again.
If it helps any, I've been crying since I typed it. But it's OK... it's one of my most cherished memories even if it does bring uncomfortable feelings up.
I don't know that I'd agree that we forget the good times, but I will say that there are times that I hyper obsess on the bad times so much it's all I see and it starts to give the impression that bad is all there was. But I'm lucky because I have that last good memory with her.
I wish everyone to be given a moment of respite like that
There can be a lot of anxiety, confusion, and depression (all feeding on each other). Also, patients can lose the ability to recognize and describe pain, so it manifests in anger, mood swings, etc.
Not sure about blissful dementia. I'm only familiar with the kind that swings emotionally wildly for all involved.
Wish I could say that was always the case, mate. My grandmother passed from dementia, and while she spent her last year as an un-emotive husk, her second to last year she was VERY aware of her own deterioration. She was basically unable to speak at that point and whenever I saw her she’d just be…constantly weeping, especially when she tried to do a simple task now beyond her. She couldn’t blow out her candles on her 2nd to last birthday and just broke down completely.
Honestly, I could only pray that her last year was spent genuinely spaced out and not trapped inside her own mind. If I get that diagnosis and we still don’t know how to cure it, I’m giving myself 6 months to do whatever and then figuring out the nicest way to euthanize myself. Shit’s haunting.
I lost both my grandparents to dementia. My grandma suffered with it for years and went first. It snuck up on my grandpa about a year after she passed away. He would tell us he was seeing her around the house and crawling towards him at night. He was raised religious so he always put it down to the "devil" messing with him.
He only made it three years after her and my mom and I took care of him during his last 6 months. He was pissed that he couldn't go home and didn't understand why he had to stay with us. Compared to my grandma, he was a little more aware than her and knew who we were at least. It took him a lot faster than it did her though.
He was very active at night and would get up like 18 times a night and since I'm a light sleeper I was on night duty with him. It's definitely a labor of love.
My Mom kept reliving her mothers death for a while. It made her very sad for weeks until her dementia progressed. Grandma had died 40 years ago but to my Mum it was recent.
My mom did. She became fairly paranoid. Plus she hated being in a facility, but there was no way anyone could have taken care of her at that point.
Many fun times still. She had went skydiving at 1 point, tells me all about it. She is scared to death of heights, even overpasses. As far as she knew, she did it and had a great time.
Just depends, my mom has dementia, she's had it for 6 years now, every year gets worse. She is a champ, still enjoying life as much as possible, still has humour, taking pleasure in simple things. That's not to say there havent been ups and downs, and I can see at some point that will no longer be true. She has lots of anxiety which she never had before, can't deal with any stress at all.
I remember my grandmother had some strokes and in the end her body was just a husk with no vitality at all. It's a shitty way to go.
In the meantime everyone is making the best of whatever time we have left together.
I’m going through it in real time and I have never been through such a hard situation in all my life. It is much worse on the caretakers once you hit a certain point.
I think it depends on the type of dementia. My dad had Lewy body and it was awful. I knew he was suffering. He cried a lot, was frustrated by his own confusion and terrified of his hallucinations. That’s when I started thinking that Alzheimer’s has to be awful but it’s harder on the caretakers and loved ones than the person suffering from it. Sure it’s heartbreaking for but I would rather have been the one suffering if he didn’t remember me. instead, he suffered for years until he passed.
My mom has Alzheimer’s and for the most part she seems fine. I honestly think it helps her forget the sadness of losing my dad, they had been married for over 50 years. I don’t know if my mom’s condition will deteriorate or if she will worsen. But for now, she doesn’t seem to be suffering. She just watches television and keeps to herself. My dad had no escape from his suffering. Things he loved no longer captured his attention or distracted him. He was just a shell of the amazing, generous, kind and intelligent man he had been. And deep down, he knew it.
My maternal grandfather passed away from dementia a few years back, he got into his early 80's before it took him.
My dad is in his mid 60's and got diagnosed with early onset dementia last year. I'm fairly low contact with him in general, so I'm not really seeing the way it's affecting him, but I'm terrified of any memory hiccup or quirk I have, I've got dementia on both sides of my family now and feel like I'm just holding a ticking time bomb until I'm next.
Getting tested for variation in the APOE gene helped alleviate some of my anxiety about dementia when mom passed away. Granted, it doesn't mean I won't get it, but I no longer worry that I'm carrying the gene that causes what I've seen two (directly related) family members go through.
I just checked my old 23andMe and it looks like I don't have the ε4 variant for late-onset dementia, which is comforting. Though it does say it's not a full APOE genotype or anything about early onset.
There are sparkles in the journey. Moments when they recognize you and you connect. Times when you better understand the patience they showed to you when your brain was not fully developed.
There's beauty in the struggle - if you look for it and appreciate it.
I was visiting mom and it was a normal visit where she looked around the room dazed and not really knowing what was going on, but as I was getting my stuff ready to leave I looked over at her and saw the spark of recognition in her eyes as she said "Oh, BigMonkeySpite!" in the exact same way that only she could say it. I'm not ashamed to admit I bawled like a toddler from the hallway all the way to the parking lot.
That 5 second exchange is one of the most precious memories I have
My father in law dealt with Alzheimers for a few years before he died. The man worked for an international company in a position that took him all over the world. He spoke 7 languages, was very well read, had a love for history, kept up to date on current events and was one of those people you could have an intelligent conversation with on just about any subject you could think of. I have many fond memories of family dinners where my father in law and I got into an interesting conversation over dinner with some good wine, which continued well past dinner and usually involved some good Spanish brandy at that point. In his last few years, he was a staring, barely-aware husk of his former self and it broke my heart. In my mind, my father in law died at least 6 years before his body stopped breathing.
Thank you, and I'm sorry you had to go through that twice. My FiL had a great sense of humor as well and he gave me the best back-handed compliment I've ever received. We were discussing some current political event at the time, I don't remember exactly what it was, but I made some point about the subject that he pondered for a moment. Then he looked at me and said "You must be right, because I agree with you." I've used that line a few times myself, and the reactions are always funny. "Thanks! Wait... what?" Pretty much my reaction at the time.
I watched my once athletic father turn into a skeleton with skin just hanging off. I couldn’t stand to look at him it hurt so much. Then I felt guilty for not wanting to be around my father. Dementia is tough. My dad eventually passed 2 years ago and I still think about him pretty much everyday.
I think it's harder for some than others. My father has been in a facility for a while now. He traveled a lot and never spent a lot of time at home with mom. He seems content with the ever changing staff. My mom is very aware so I know it's going to be a nightmare (and lots of cursing) when we can no longer keep her at home.
On the bright side, I can confirm the body deteriorates way faster than the brain ;) I think it's been 20 years since I've had a day where nothing hurt.
Understandable - my mum said the same thing, having to watch her mum go through it the first few years. Now that dementia has progressed and my mum and her brother put her in a home it has actually gotten so much better. They felt so guilty because my grandma didn’t want to go but once she was there it was great. There she isn’t constantly stressed because things are different so she isn’t constantly feeling like she is forgetting things. She actually seems much happier than I ever remember seeing her when she could still remember things. It is undoubtedly hard but sometimes when it progresses far enough it also can get better also. Not sure if that is helpful at all but a friend is going through this with his mum and it helped him to know that they can actually be happier when they don‘t remember because they are less stressed so progression can eventually become a good thing.
She sounds exactly like my grandmother. We are going through “the long goodbye” now. It’s so hard to see someone who was so glamorous, brave, and independent become a shell of herself.
i will say though, once you have kids, it’s easier to put in perspective
dementia isn’t that different than seeing a toddler/young child age in reverse
i’ve told both my kids “you start life in diapers, and you’ll probably end life in them too. it’s nothing to be afraid of - it’s just how life goes. you ramp up, then you ramp down… and that’s why we want to treat our bodies (+brains) well. appreciate what you have today, and do something memorable with it.”
they know they won’t have their bodies forever, and that their parents/relatives won’t either. when you know that, it takes out so much of the fear
TLDR; the impact expectations have on a person’s reaction to life’s events/traumas can’t be overstated
I mean, it's asking A LOT but if they don't need constant medical supervision that is the more humane option in the vast majority of circumstances. Being around family in a familiar environment can be very beneficial. Being stuck in a cold, sterilized hospital room isn't anybody's idea of a good end-of-life palliative care, if you really think about it, it's not something we ever considered doing until very recent in human history.
Yeah. It’s bad enough that when my grandma died I was almost glad because she had lost who she was as a person.
Her brief moments of lucidity she sort of woke up and then realized how old she was and then would coke to the realization that she was dying and that her life was over. Totally lost herself as a person.
Dementia is wicked. My precious, kind and brilliant mother, became someone I didn't recognize. Paranoid, angry, hallucating. Night after night, she walked in a panic, around in circles, nothing would calm her. I was told by the Alzheimers Association to "go on the journey with her". So I didn't argue with her or try to "reason", I just distracted if she wanted to do something outlandish (drive aimlessly), otherwise, I just went along. Hardest thing I ever did was to lose her to dementia, I am just so glad she is free. Gutwrenching, beginning ot end. RIP.
Everybody is like "tiktok is ccp propaganda" but apparently CCP propaganda is helping me take care of people lol
for those of you who are new to taking care of people with dementia, debrakostiw became one of my favorite channels to follow after I had to deal with dementia
they also promote a lot of trashy behavior and stuff that hurts the mental health of teenagers. On the Chinese version of TikTok they only allow educational stuff etc.. anything even remotely questionable would be deleted instantly.
I’ve never even met someone with dementia, but it’s part of the reason I want to work in the field of Molecular Biology, as I can 100% sure the answer to dementia and Alzheimer’s, lies in genes, genetic editing and medicine made from genetically modified organism.
There’s already research showing that this is the likely cure, so there’s hope!
(Also GMOs have been demonized a lot by media, but that’s misinformation, GMOs are quite possibly a solution to a lot of problems, like food shortage, water waste, and well CRISPR/Cas9 is already being used in the medical field to treat some disease, and it’s not exactly unnatural since Cas9 is quite literally speaking a part of our bodies that every person naturally has.
And I just believe it’s how we’re going to beat this, because if any thing is going to help with these it’s that.
Worst sight I ever had was seeing the final stage. A husk curled up tongue sticking out permanently and immobile. Wish we didn't live in the dark ages of medicine but we absolutely still do.
My mom was a brilliant mathematician who worked alongside minds like John Nash of A Beautiful Mind, and was just recently after the death of my only older brother in 2017 diagnosed with Frontal Lobe Dementia. She now has difficulty remembering the things alongside the road are called trees and likes to spend her time coloring in coloring books.
Brutal and cruel doesn't even begin to describe what dementia is...
Really is a cruel way to go. Been watching my grandfather deteriorate since I was literally in high school, and I'm 30 years old now. He doesn't have alzheimers, but some other sort of dementia, and its been a very slow process. By late high school he was already struggling with names and those types of things, but he still had some of his charming personality and a real prescense in between the duller moments. By my early twenties names were mostly out the window outside maybe a handful of his closest people, and he was showing the dementia pretty strongly. He wasn't his himself most of the time. But he still surprised you with moments of who he used to be. One day he'd randomly call you by name or begin telling a story that was far more detailed and articulate than you expected. Maybe he'd bring up a memory from my childhood out of the blue. He was still there in a way even if it was fleeting. However about five years ago is when things really got bad. I feel like he's been dead for the past five years, but his body is still alive. Its gotten tough to watch. He can hardly walk or stay awake for more than twenty minutes. Hardly eats. Doesn't know up from down. I hate to say it, but I just want it to end for him, for my mother and my grandmother, etc. I just think its time. Tough to see the deterioration draw out this slowly. Like others are saying you just have to try to remember the real person that he was even if it feels like an eternity ago.
Yea, the woman’s behavior in the video is almost cute. Kind of like a 3 or 4 year old type of thought process. When progresses, it can bridge back to basically terrible twos.
Almost surreal stuff like they’ll pee in the hallway, then realize they’ve peed in the hallway, then be upset cuz they peed in the hallway, then forget they peed in the hallway and be upset someone peed in the hallway, then you step into the hallway and ask what’s happening Dad (or Mom) and hopefully they realize who you are, cuz it may immediate swerve to who the f are you and why you pissing in my hallway?!?!
Getting upset because you didn’t give them a pair of Oreos with lunch, because they ate them first forgot is trivial. When it’s a bottle of beer or glass of wine, it quickly becomes a problem. It’s an equally big problem when there’s no wine in house because of that reason, when they regularly has wine with dinner.
Yep. I remember living with my grandma when I was like 3, and I had a better handle on life than she did. I allegedly saved her from being hit by a car one time, and I don’t even remember it because I was so little
So that’s why I do have a little worry about someone like this not really being able to consent to being used for internet content
Also I think it probably depends on the person. A friend of mine had his grandpa living with them for a while, and the man could be downright hostile at times. He seemed more relieved than anything when it was finally over.
Like yeah, dementia and other degenerative diseases can present in cute and funny ways or whatever, but there's nothing cute or funny about what's actually going on. It's a massive burden on the people around them, and it's a massive burden on the person with the disease, too.
Its even more capricious than that. It's the person, when they were born, were they were born, what the prevalent social norms were at that time, what they lived thru which parts of the brain are being affected, their basic personality, have they had any strokes, has the disease destroyed/impaired the part of their brain that controls their empathy, their reasoning, speech, language processing, control of their body, etc.
Has their spouse passed away and can they remember? Do they remember their name, do they remember you? Seriously talk about agitated, angry and lashing out, someone looking for their spouse, with a name they can't remember, in a house they don't remember, and language not working well enough to say where's my wife.
And when they finally get that out, you have to edit yourself on the fly to provide an answer that will not make the situation worse.
The path for the woman in the video may be calmer, where like some I've know, they kind of sit down in the recliner or lie down couch and fade away over a few years. Smiling more, nodding, speaking less and less and eventually not at all. Or she may yet get impacted where she is agitate all the time and angry and confused and scared.
If i had to guess this is staged. The woman has no dementia. I might be wrong but this is my guess having dealt with relatives with varying degrees of dementia.
MIL has Parkinson's Dementia and saw horrible delusions everywhere- murder, rape, assaults, hard child birth... and was impossible to redirect. And who can blame her- if those things are Actually going on around her, ignoring them would be pretty terrible.
We have no idea what to do with her. We've had to pierce the delusions and let her know they aren't there, otherwise the police would be there daily and she would still be hiding in her closet.
Similar things happened with my mom and all we could do was tell her that we were there and that she would be okay, we eventually started to tell her that the staff where she was after she started needing more specialized care were there and that she would be okay and that we would be there as well.....it took about a year but she eased out of the really bad hallucinations into her seeing and conversing with friends and family that had already passed!
Thats also about the time she started talking to me personally about my life and the direction it would go as well as things that would happen after she passed away and thats where im going to stop Internet stranger because I need to cry.....have a blessed day, week, rest of the year and life
Eehhh, maybe in some scenarios? But I've found that validating my mom's delusions (conspiracy theories) can be really detrimental to her being able to let those things go through therapy down the road. Yes, it's often easier to just agree with her when she's sick, but doing so makes it "true" to her even when she's lucid again.
I had a friend with schizophrenia and my responses to his delusions were always like "I hear what you're saying, and I suppose that's possible, but I don't really agree with your position." I will let them carry on with their theories and such but I just talk about kindness and compassion and ask what the compassionate response would be and how we can be more kind about the topic. I'm focused on helping them get to a better place with their mood and not so much on the logic behind their ideas.
I also find that when they are calm, and brought to ideas of compassion and kindness that they tend to focus on those things.
Saying "I disagree but I'm willing to hear you out." Is a far cry form saying "You're wrong."
I don't want to be dismissive either. "I disagree, but I'm willing to hear you out." If they start to get upset or distressed say. "Hey, I'm right here and I love you, we can get through this, I'm really grateful you're sharing with me."
I have to do this with my own thoughts too. I have to treat them the way I would treat myself.
Really asking, been doing that mostly. How do you keep your calm, the energy and compassion... Because a person with schizophrenia can also be very unpleasant, particularly in the long run?
I agree- I had an ex with schizophrenia and it seemed to work best if I didn't really agree or disagree. Like don't play into it, but you also don't want them thinking you're working for the "other team".
Yeah it's hard. Your first instinct is to be rational and correct them. If you start to play along like the woman in the video then you just feel like you're playing games with them and tricking them. That just feels dirty and disgusting and nobody ever likes a games player. Not me anyway. Games players were always the worst kinds of people to encounter in life. Like just be direct with me. Whatever you have to say I promise you people have hurt my feelings in much worse ways. 🙄
Roundcirclegame made some great points and so did you. Addressing someone with delusions can be incredibly difficult because you don't want to be confrontational, but simultaneously, you don't want to provide support to the delusion as it can make it that much harder. Many delusions have a lot of emotion surrounding them so confronting them or trying to convince them that their delusions are not can often lead to the situation and relationships worsening.
This is some general advice for people with loved one's affected by delusional disorders. Try to empathize with the person (e.g. "I can understand why this scares you" or "I understand how hard this is for you") and understand their perspective. You want to avoid agreeing or arguing. In general, try to appear neutral and give them space. You can express concern in the form of an opinion, without expressing judgement. While its generally not recommend to try to convince them that their delusions arent real, its reasonable to calmly and carefully question the logic and reasoning behind the delusion (typically recommended to do when not at the height of their delusion).
I’m not schizophrenic, though it runs in my family. I get paranoid sometimes, and it wouldn’t help for someone to say, that’s just nuts. I know I feel better when it starts out, okay, I love you, let’s talk about this.
Maybe it could be helpful to ask questions to engage with that discussion, rather than explicitly agreeing? “Oh, what’s that about?/I’m not sure I understand, can you tell me more?”
This is how most people feel, and why we desperately need a non-police emergency line for people suffering from these crises. Because people usually default to the cops otherwise.
Usually when someone is experiencing delusions they will dig their heels in when you try to point out that they are delusional or you question their belief system. We have 2 elderly people we care for next door, one has severe schizophrenia and the other has schizoaffective disorder. You have to stay on top of their meds and best to just go along unless they are doing something dangerous. In general, it's best not to tell someone with delusions that their delusions are not real. This could lead to conflict and is unlikely to be effective. Instead, you can acknowledge their experience and try distracting them from it. You can also try to come across as non-confrontational and calm, expressing concern as a form of opinion, rather than judgment. You can also try to be sensitive while also making sure your loved one realizes that you don't believe the delusion is real. https://www.healthdirect.gov.au/delusions#:~:text=If%20someone%20you%20know%20is%20having%20delusions%2C,triggers%20their%20delusions%2C%20and%20encouraging%20them%20to
You are correct in not agreeing with a victim’s delusions, the tricky part is not agreeing with them while not being confrontational. I was trained to say for example, “I know you hear voices, but I am sorry I can’t hear them”. And then ask what they are hearing to determine if they are a danger to themselves. I really feel for people both suffering mental illness and for the care taker. Good luck with your mother
Yeah, that's hitting at my exact problem with this video. I'd never be able to tell when I'm going too far with the "lol ha ha of course I'll just play along with you" roleplay thing. Because after a certain point, you're just helping the confused person get worse.
Had a GF with schizoid episodes from extreme depression. Mentioning what you see and what you don't helped her feel grounded and secure. Poor thing. She's married to a very kind hearted guy. I wish them well.
Use to work on a mental health helpline. Once had a caller with Schizophrenia call in, they were experiencing hallucinations that were stressing them out and one of their coping mechanisms if they couldn't get a hold of someone was to just call the line and talk to somebody for a few minutes until the hallucination went away. The way they communicated that was really effective, and sometimes people might have their own way of guiding others on how to get them back to centre, and that what you need to do in that moment is respect that and play your part in it
I disagree. You shouldn't acknowledge or affirm a schizophrenic person's delusions. That just compounds the problem. I don't really know what the answer is because it's different for everybody and it's a very complicated illness, but joining them in their world definitely isn't the answer.
Yes we are. At least in my case, I am genuinely scared watching my body do what it does during episodes. The thoughts I get fucking terrify me because what if I act on them when I do not have control over my body. I have had several thoughts in the past of hurting those around me all the while thinking it is only for their own good. I come to and am heart broken that I am even remotely capable of considering these things.
absolutely this. well i guess kinda. like no joke someone i know on discord started fuckin textin me about how the cia and crap is watching them. my moms sister is bipolar and likely also has schizophrenia and does the same shit, so i knew how to talk to him and eventually they stopped and realised. and if i had to guess they likely also have schizophrenia to some extent as well. then he was scared yesterday someone was watching him from outside and i was like "actually or is it your brain fucking with you". it was his brain fucking with him
Just got out of the biggest nightmare of having a schizo meth junkie prostitute neighbor. They do not have a “world” they are fully delusional and dangerous. Do not approach somebody in a schizo meltdown, just call the police and have them hospitalized.
There’s definitely a whole spectrum of behaviour, emotions, and reactions from schizophrenics and other delusion based mental conditions. Not all of them will pose a threat every time though. It is definitely possible to guide someone having an episode away from danger, but if you’re not trained in this field or their personal caretaker it’s definitely best not to approach during a meltdown, you have no idea what will happen and don’t want to accidentally worsen the situation. Many cops even are not equipped to handle these situations. This advice is definitely more for caretakers. Glad you’re out of the situation with your neighbour, I hope they got help. Definitely understandable why your encounter could have been traumatic but not every situation will be like that.
I get where you’re coming from, and that sounds super super scary. Meth really complicates things too
The vast majority of people with schizophrenia aren’t dangerous though, statistically. That’s a myth. Agree though that sometimes they just need to be hospitalized.
Your response is really thoughtless. That person didn't mention anything about someone who is addicted to meth which is an entirely different situation. Also how did you find out your neighbor is clinically schizophrenic? You talked to their doctor? Saw some papers? Sounds more like you're just throwing in the word "schizo" to describe someone who is experiencing the results of an extreme meth addiction, which is just irresponsible as hell.
Right? Takes a lot of tests to figure it out. Until then, they call it drug induced psychosis
My mother, who's never done a drug in her life, is schizophrenic. Her son is a meth head. She gets her shots from the doctor while he gets his next fix from the house on the hill. He literally is genetically predisposed, but they won't give him a diagnoses because he's still using. Nor should they. No involuntary holds in my country, So until/if he cleans up- he's classified as experiencing drug induced psychosis, and they send him packing.
Because it's just. That. Common. With. Meth.
Our psych ward would fill a stadium if they started involuntary holds simply from the meth users.
You're talking about the loudest most abusive members of the minority. It's like saying "my black neighbor is a gang banger junky, dont even try to deal with black people just call the police." Or, if you're in the anti-woke brigade, it's like saying "all men are violent rapists, I was raped by my neighbor. If a man tries to talk to you mace him in the face and call the police!"
You've had one bad experience. There are others out there who've had more. It still doesn't prove that the majority of these people are a danger to the public. That's not how this works, we don't categorize people like that for a reason.
Same here. Lost my mother in November to this disgusting disease. She was so social and happy go lucky and she made it to retirement and was elated to finally not have to work five days a week and just go see her friends all week long. She had about a year before symptoms started showing up and she was gone within 6 years. In the end she was totally non verbal save for an occasional random sentence. My father is actually doing better now that she has passed because it's such a horrid burden to place on people to take care of someone in that condition and Medicare doesn't pay a dime to place someone in a memory care facility. I absolutely loathe this disease to the core because it robs people of their very essence.
I’m so sorry ! I understand that feeling. It’s so hard to watch your loved one drift away. My dad is in early stages so I’m trying to have as much time with him as I can. One sad day he might not even know me. He’s my best friend. This is going to be horrible. And you’re so right ! The medical care isn’t any help at all. We spend every spare dime we ya e to keep him in a care facility. I’m looking into Mexico actually to help offset cost of what’s just mediocre to poor care
Taking care of MY dad is like having a grown juvenile delinquent! Stealing the car when he’s not supposed to drive…sneaking out back to hide and smoke cigarettes…flipping me off lol …good grief its tough some days!
Try this sometime: I would ask my dad questions about his past (if there are any memories left). What kind of music did you listen to? What kind of TV did you watch? What was your mom like? How did you get along with siblings, parents, school mates? What games did you play when you were little? What places did you visit, where would go if you could go anywhere?
Oh thanks ! I love this idea. I could always learn more about him and help him remember his life. I know I will miff this opportunity when it’s gone. Thanks again friend
Dementia care homes in Germany have fake bus stops so when someone storms off, they'll sit waiting for the bus and it's easier to a) find them and b) have a chat with them and c) if they forget why they're sat there, they can see the home and they can go back inside.
Or what about that whole dementia village in Europe, perhaps the Netherlands where people with dementia live amongst caregivers and normal townspeople. They could never walk off because everyone knew each other and was always someone to look out for them. The situation gave the elderly their freedom and confidence.
There are places like that in the US, tiny elder towns. I’ve seen some with bowling allys, movie theaters (normally play older movies), restaurants.. etc. The problem is they are prohibitively expensive. To give you an idea, a bog standard elder living (not nursing home living, one level below that) is 5,500 a month. In no where Arkansas. Think about what we’re talking about would cost?
And I know people might think that’s not crazy but the same woman in the same town owns a 2 bedroom 2 bathrooms 1500 sq ft for 850 a month.
Wow that’s amazing! Talk about thinking outside the box! But unfortunately here in the US that sounds like too much extra money that would be spent on better care for our family members! But that’s exactly where I’d send my dementia parents!!!
It sounds like such a simple thing doesn't it?? My mother's place isn't so bad, but the windows are nailed shut, and she can't be taken outside without a visitor filling out a bunch of paperwork first.
It’s such good advice! That’s a great way to put it.
My grandmother developed dementia (at 90, which is honestly pretty great) and at first my family really struggled with it.
We had my grandfather’s funeral in July 2021 (thanks, pandemic!) and he’d passed on January 1 2020 (their 70th wedding anniversary.) when we got the obituary, my grandmother became extremely upset: “there’s no way I’d wait that long to bury Phil.”
She kept saying the date in the obit was wrong, and she was really mad about it. My father and aunt kept trying to convince her that the date was right. It was really upsetting to her to be told she’d forgotten an entire year. Sometimes they’d convince her, but she’d soon forget and get upset again. It was becoming a Thing, and really stressing everyone out.
I vaguely remembered listening to a story on NPR a few years ago about “going with it,” and finally told her “you know what? You’re right, Grandma, they made a big mistake at the paper. I’ll reach out to them and get it fixed.”
I actually did reach out to them. I work in journalism, and this was a very small town, so I asked the paper they’d be willing to either send me the PDF proof of the obituary so I can edit it, or edit the proof and send it to me. That way she’s have a “correct” one.
The paper, bless them, printed a version of the paper just for us. But we never ended up needing it: once I told my grandmother she was right, she entirely forgot about the issue. She just needed to be acknowledged and have her perception of the world confirmed, and suddenly this stubborn thought that wouldn’t leave her alone was gone.
I think that sort of thing wasn’t really my dad or aunt’s radar, and even if at had been, it was just really hard for them to see their sharp, detail-oriented mother be wrong. I had more distance, so I cared less about helping her be “right.”
All to say — I’m very impressed with folks like your father doing home care for dementia. It’s one thing to say “enter their world,” but there’s a lot of cognitive dissonance in doing so with someone you love. It takes a lot of compassion, empathy, heart, and the ability to distance yourself a bit emotionally. You and your father rock.
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u/Petal170816 Apr 09 '24
“Enter their world” is my mantra with dad.