What are they desperatley trying to tell you

  In today’s episode 18 of the Truth, Lies, & Alzheimer’s show, Lisa goes into depth about how effective communication is key to working with Alzheimer’s disease and dementia sufferers. Probably the most difficult challenge for family members and caregivers to overcome is the ability to understand what people who are living with dementia are trying to tell them, especially when they can no longer…

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Dragonborn: *became the emperor, United tambriel once more and defeated the dominion with their friends and brought an a new age of prosperity and peace, now elderly and suffering from dementia, wandering the halls of the palace looking for Kaidan who has already passed on* m-my love? My love where are you? Kaidan? Kaidan?…

Sheogorath: *watching their friend from the shadows with a heavy heart as he twists his shape into that of the swordsman as the dragonborn remembers before stepping into view* I’m here my dear.

Dragonborn: *tearfully tries to run to him but can only manage a shuffle instead* I-I couldn’t find you- I thought you’d left me like everyone else did…

Sheogorath: *mimics Kaidans slightly crooked smile perfectly* I’d never leave you my love. Let’s go home now okay?…

Dragonborn: okay…

Sheogorath: *pulls them into a hug and so gently takes their life away, letting their soul go whether it may please and freeing them from the burdens of madness* …we never did get to share that strawberry tart… maybe some other time, my friend…

Writing the hospital’s end of life and palliative care policy and it’s all focused around working with the resident and/or their family and I’m just so :(( what about the dementia patients with no family :((

So what happened is that we got back from our Orlando vacation just about the time Kimmer's aunt had an accident. 

We were home on a Sunday and for a minute Kimmer was almost on a plane again Tuesday morning.

Almost.

Me, I didn't think this was that kind of emergency even though it turned out Kimmer absolutely had to go down to be with her aunt Jacquie.

So yeah. Tuesday was maybe yes maybe no and then probably later… by which time her aunt's body declared the problem and surgery was on the table. Well, not so much on the table as actively being served. Surgery was gonna happen.

Kimmer was on a plane Thursday afternoon and, a little over a week later, her aunt was in hospice care.

Hospice care.

And no. We don't know how long she has left. There is no steady, linear decline. Instead, there are days that defy what we know of Jacquie's cognitive state. It feels like wires are spontaneously connecting then reconnecting in her brain across the days and weeks. Some connections result in very poor cognitive and physical ability. Some connections result in her old self.

Her old self.

The one with memory.

The one who remembers people and their names.

The one who knows the connections between the current moment and the days leading up to it.

The one with actual long term memories.

The vibrant one.

Her old self.

I don't know what to tell you. The difference is stunning. And unprecedented in Kimmer's experience.

I actually asked.

Still, this is hospice and everything we know tells us this is the end. This is the final chapter of Jacquie's life.

We just don't know how long the chapter is.

And we definitely don't know if there's an epilogue.

The saving grace is that there's time to say goodbye. There's no emergency here. Just an intention by all of us to end well with her. Aunt. Mother. Grandmother.

So Kimmer's on a flight and down in Irvine that Thursday as I said. What I didn't say is that she basically took her work life and her school life with her. She continues to maintain her work schedule with client appointments online from different locations depending on the day and the hour. She's deeply into her doctoral program, reading, studying, writing papers, participating with her cohort in online classes, speaking with her professors, taking tests, and so on. 

The plot twist… is that she's Jacquie's medical advocate. She coordinates care with the surgeon, physician, medical staff, friends and family. She keeps family and friends up to date, she helps everyone navigate the complexities of Jacquie's health and the reality of her wishes. She researched hospice care. She interviewed social workers and hospice admins. She oversaw the move. And she's there every day.

Every day.

It's much, is my point.

It's very very very much.

Which brings to mind a lighthearted scene from Harry Potter & the Order of the Phoenix.

Don't you understand how Cho's feeling at the moment?" [Hermione] asked. "No," said Ron and Harry together. Hermione sighed and laid down her quill. "Well, obviously, she's feeling very sad, because of Cedric dying. Then I expect she's feeling confused because she liked Cedric and now she likes Harry, and she can't work out who she likes best. Then she'll be feeling guilty, thinking it's an insult to Cedric's memory to be kissing Harry at all, and she'll be worrying about what everyone else might say about her if she starts going out with Harry. And she probably can't work out what her feelings toward Harry are anyway, because he was the one who was with Cedric when Cedric died, so that's all very mixed up and painful. Oh, and she's afraid she's going to be thrown off the Ravenclaw Quidditch team because she's been flying so badly." A slightly stunned silence greeted the end of this speech, then Ron said, "One person can't feel all that at once, they'd explode." "Just because you've got the emotional range of a teaspoon doesn't mean we all have," said Hermione nastily, picking up her quill again.

Like I said, lighthearted. But the sentiment is dead on.

Because at what point does a person's head simply explode?

For now, we're simply happy for the inner strength that's in play here. We're fortunate for the inner strength that's in play here. We're enabled by the inner strength that's defining this final chapter.

The one in which we have the chance to say goodbye.

And end well.

🙂

Long post ahead. My full thoughts on the fallout series. TW for references to Sexual Assault, racism, antisemitism. It's not particularly in depth here- but I do reference specific acts of violence done in the show.

I've had people insinuate I'm only mad because I'm a New Vegas fan, because I think they retconned the lore. I'm not upset at the fallout show for its dubious lore additions and reworks. I think they're quite bad in places, but they're by far the least of the show's problems.

This isn't a case of a New Vegas fan mad they messed with my game in a way I didn't like.

Please refer to literally any of my posts pointing out the racism and antisemitism in the show. They brand a black man in episode 1. They named the enclave scientist after a real life holocaust survivor and then spent most of the show lobbing around his decapitated head like a volleyball.

But I'd like to consider other elements of the show. View it as a whole.

Consider the inherent misogyny of having a female main character whose entire character arc is just her getting abused for 8 episodes. How the trajectory of her character revolves around not giving up on the humanity of the man who waterboarded her and sold her to organ harvesters. A female main character who is raped in the first episode and watches her entire community get brutalized and who comes out of it completely unphased- still as plucky as ever- just worried about her dad.

Consider the horror of having a black woman be the one to drop the bombs. Consider the horror of her leading a council of elites who have infiltrated and taken over the US government. Consider the ways this group is presented and shown, the ways every fault of the US government in the series is offloaded onto a shadowy group of elites.

Consider how the capitalist critique of the show only goes so far as saying there's a secret organization of bad people who must be purged. The antisemitism and conspiratorial nonsense inherent to that premise.

Consider the rampant classism with the show's depiction of Wastelanders as either animalistic monsters or too stupid to live.

Consider the ways the show punishes nearly every act of kindness- the ways the world rewards might-makes-right authoritarians.

Consider the way the NCR collapsed offscreen because a disgruntled husband was mad his wife left him, and how after it collapsed the army immediately became raiders and the survivors became blood drinking cultists. Don't give me "it's just shady sands that collapsed" because the NCR was a developed nation. If one of their cities blew up, they would send aid. They would assist.

Consider the way the show constantly uses sex crimes as comedy and horror- the incest jokes and the "chicken fucker" bit, and the Vault 4 monster impregnation and the main character's rape in the first episode.

Consider the ableism of the treatment of ghouls, how every ghoul is now a ticking time bomb, how Lucy helps free a small dementia-riddled old ghoul woman from a medical torture facility and then is immediately punished with the woman trying to inexplicably murder her. Thaddeus openly talks about ghoul exterminationism and it's never a joke or a bit- he just says it and nobody reacts or says anything.

Consider the way the Vault 33 town councillors use real world progressive talking points about restorative justice and prison abolition and multiculturalism- meanwhile Norm advocates for the death penalty and a closed society. How Norm is shown as good and righteous and the vault dwellers range from deluded to damningly stupid- how the mere concept of restorative justice is made a farce because the NCR raiders are screaming about eating organs and murdering people 24/7.

Consider the way they removed the Boneyard, and the Followers of the Apocalypse by extension. In New Vegas we heard about the Followers operating a university in LA. It's gone now. Not destroyed by bombs- but written out of existence because the Boneyard never existed, and Shady Sands is in its place. Consider what that says about this world- that the group most dedicated to peace and rebuilding has been surgically excised from the narrative- destroyed more wholly than even the NCR- written out of existence entirely.

This is the single most reactionary fallout story that has been produced. By a fucking country mile.

Whatever lore critiques there are should be secondary. The storytelling is reactionary in ways I straight up have not seen from other Bethesda entries in the series. It is cruel to a fault, and depicts a world that is incapable of healing or growing- where the best you can do is hold onto that small spark of goodness while every bit of the society around you tries to murder it out of you. This isn't a story about rebuilding, or about postwar politics, or about society- it's about dueling warlords and might makes right attitudes and grimdark views of the nature of humanity. It's fallout in aesthetics alone- and it's perhaps the most hateful thing I've seen come out of this series outside of the actual neonazis in the fanbase.

Whatever hope there is in Moldaver's final moments looking out over the glittering ruins of LA is undercut by the knowledge of what came before. What was destroyed. And it's undercut by the Brotherhood's totalitarian control. It's not hopeful, it's the bare minimum of survival. It's all the progress of the postwar world, 200 years of humanity and history, reduced to just barely getting the lights back on.

In the intro to fallout 1, "War Never Changes" is used as thematic glue. It ties together two concepts- past wars- and present capitalism and militarism.

Ron Perlman describes the Roman Empire, the Spanish conquests of the Americas, and the Nazi regime- and then he says "war never changes" and uses it to connect those past atrocities to the modern world of the setting- to the war that ended everything. The phrase existed to link the resource wars and their ensuing fallout to all the crimes of empire prior. War never changes wasn't a hard and fast rule of human nature- it was a specific condemnation of America.

Lonesome Road even ends with the phrase refuted. War Never Changes. But men do, through the roads they walk. There is hope. That's what this series has always been about. The Master died at the end of fallout 1 and said "leave while you still have hope."

In this show, the black woman Vault Tec exec who ends the world says the phrase. It's stripped of all meaning. Just a generic throwback because it's a famous phrase in the series' history. It's not a condemnation of America, it's a celebratory thing. Vault Tec toasting to the end of the world.

What a thing to see this series become. What a thing to see celebrated.

ok so obviously all disabilities valid all disabled people should be allow talk about experiences and struggles even if another disabled person have worse but like also

don’t think like. highly conventionally successful disabled person who get live relatively normal life with their non terminal illness. should be allow go on speak for & speak about severely disabled people / with terminal illnesses / etc. as if their experiences “basically same thing” because both disabled. dont think it ableist point out these two groups clearly have different lives different experiences different relationship with disability. actually think it ableist to weaponize own disability status to speak for more marginalized group.

of course there going overlaps between two, like someone can be highly conventionally successful and have terminal illness for example

but for example am think about like. white PhD middle class published author who disabled but live independently who clearly can hold job (and highly rigorous education) and very high cognitive abilities. clearly not same & should not get speak for, idk, someone nonverbal severe autism severe ID with no functional communication who need 24/7 supervision. or kid with childhood dementia who lose ability almost moment they gain them who may die before even reach two digit age & lucky if get live to adolescence. like idk i think you just shouldn’t.

of course that PhD disabled person please talk about your experiences, academia highly gatekept very inaccessible need all feminist disability justice disabled people voices. but moment pretend you know it all pretend you get access to all disability, you just ableist.

and if you hear “some disabled people have it worse/more severe than others” and immediately think am pro eugenics think am advocate for kill all disabled people who “bad” quality of life, or somehow need other people feed you wipe your butt mean you can’t live happy fulfilling life, or am say milder disability deserve less or something something about invisibly disabled people or immediate “what about me”ism or idk whatever you all say, when there never ever word mention about that. idk, you the one who drew connection, not me. that on you.

I was mentally playing devil's advocate because I have a terrible habit, thinking "While I agree, there are authors who might just add details for the sake of visualization without any intended impact to the scene and it's important to keep in mind, like with the outfit descriptions in my immortal" and immediately realizing

That is a silly comparison to begin with

The outfit descriptors in my immortal DO impact the scene and the reading, especially in terms of how you imagine the author of the story

My Immortal would not have been as impactful as it is without these details

Even if the author didn't intend it as a meaningful detail, if it can be read as having meaning, then it can have meaning

those outfit descriptors are absolutely intentional

YEAH BABY THAT'S WHAT I'M TALKING ABOUT!!!

The curtains were blue for a reason and Ebony Dark'ness Dementia Raven Way had icy blue eyes like limpid tears for a reason!!!

Was it GOOD writing? By most measures, no! But the author told us every color in Ebony's hair, every garment on her body, and every product on her face because she was deliberately trying to craft the perfect visual representation of the quintessential 2006 white goth girl.

Even the simple little fact that her fishnets are pink instead of black tells you something—the scene-tinged aesthetic movements the author was drawing from even though she only references "goth" style, the fact that Ebony as a character skews feminine in her presentation rather than the genderbendy androgyny that's also common in the goth scene—but we would have gotten a very different description if the pink fishnets had been the only color mentioned in her wardrobe.

You know and I know and everyone knows that the author gave her pink fishnets because she probably thought they looked "cool" amidst all that black—but the fact that the author prioritized a "cool" main character (rather than a dull everyman or a dislikable villain) tells us about the author's literary priorities, and what the author considers "cool" shapes the whole story.

Those over-the-top descriptors tell you exactly what kind of a character Ebony is going to be, exactly what aesthetics & tropes the story is going to explore and glorify (doom, gloom, goths, vampires!), and exactly who the author idolizes and considers admirable—from the specific (Amy Lee and Gerard Way) to the broad (nonconformist counterculture rebels who stand defiant against conformist "preps").

Was every detail in Ebony's appearance necessary? No. But did every detail matter? Oh yes. Every last bit told us a little bit more about her character, the story to come, and the author behind it all.

Incorrect Marauders/Royal court as quotes from my DND group (Part 10) (also my creative writing class)

Lily:“He’s a handsomer, better version of you, and his dick is pretty big” Her ex:“You discussed this”? Mary:“Oh absolutely we did” Remus:“I'll allow you to talk- or I will accept an answer in the form of interpretive dance”  Remus:“Allegedy his in laws hate him so I feel that should be discussed” James:“I would prefer it not” Sirius:“There is no alleged, he's a fathers nightmare” Peter:“You have a dad”? Marlene:“The hook- the girlfriend lore so to speak” Regulus:“Boba isn't good for you” Lily:“One day I will be in the ground, and Boba won't be what put me there” James:“When they embalm me I want them to find boba in my stomach-” Evan:“I am a benevolent god, so I say yes” Lily:“Maybe the real villain was boba itself-” James:“The bubbles tempt me, I am a weak man” Barty:“You do so much damage and just get the biggest erection-” James:“I do this for you- but i'm rapidly reaching my limit” Regulus:“Literally just quit your job-” James:“I would but your bougie-” Pandora:“He’s just big and fleshy” Barty:“He's waving a red flag” Dorcas:“Honey no- his whole ass uniform is blood red” Barty:“Mmmhmm my favorite color” Marlene:“I'm the chad YOU'RE The soy boy” Pandora:“The Chant? It makes no sense but the forks are vibing and they come out dancing”   Dorcas:“Nothing that happens here is funny- that's what makes it hilarious” James:“Well maybe i'm just being petty...” Remus:“I for one know i'm petty” Sirius:“I didn't go ONE TIME-” Remus:“You literally never went back” James:“Guys your giving me trauma from the gym” Regulus:“Get Cupped idiot-” Sirius:“Keep that in mind- because in 8 years you will completely forget” Remus:“Well I don't have dementia like you”  Barty:“I'll be a little bit of a demon here” Regulus:“Do you mean devil's advocate” Evan:“Same thing.” Dorcas:“Just fuck me I guess” Marlene:“Yeah fuck you-” Barty:“None of my fireballs have done shit- and it's really pissing me off” Dorcas:“He is meant to be used” Regulus:“Last words are for fools that never said enough” Barty:“Grovel before me virgins-” Remus:“I'm going to aim not to hit my friends” Sirius:“Who are you and what have you done with Remus”?

Rosalynn Carter (1927-2023)

Rosalynn Carter has died at the age of 96. She was one of the more influential First Ladies – ranking behind just Eleanor Roosevelt and Hillary Clinton.

Rosalynn Carter, the wife of former President Jimmy Carter and a longtime mental health advocate and humanitarian, died on Sunday in her home in Plains, Ga., surrounded by family, according to the Carter Center. She was 96. The Carter Center announced Rosalynn Carter was in hospice care on Friday. Her family said earlier this year that she was diagnosed with dementia. Jimmy Carter, who is 99, has been in hospice care since February. "Rosalynn was my equal partner in everything I ever accomplished," the former president said in a statement. "She gave me wise guidance and encouragement when I needed it. As long as Rosalynn was in the world, I always knew somebody loved and supported me." Rosalynn Carter was first lady from 1977 to 1981 and was dubbed the "Steel Magnolia" by the press during her years in the White House for the toughness she exhibited behind the gentle persona she outwardly embraced. Throughout Jimmy Carter's time in public office, she was her husband's closest political adviser. She also revolutionized and professionalized the first lady role by expanding the office beyond hostess duties. [ ... ] After her husband was elected president, Carter ushered in a new era as first lady. She attended Cabinet meetings and was only the second first lady to testify before Congress. According to Brower, she took a professional approach to the role, exemplified by the fact that she was the first presidential spouse to carry a briefcase to the office on a daily basis. "I think Rosalynn was a feminist and somebody who wanted to be a true partner to her husband," Brower said. "And she didn't see any reason why she shouldn't be allowed to do that."

She had been an advocate for mental health long before she came to Washington.

As first lady of Georgia, Carter encouraged her husband to establish a governor's commission on mental health, which outlined an influential plan to shift treatment from large institutions to community centers. "She really began the effort in this country to modernize mental health care," Cade said. "And the mental health care system that we have today in many ways reflects her 50 years of advocacy." Carter was also an early advocate for reducing the stigma around mental illness and, in speeches, often framed mental health care as "a basic human right." In 1980, President Carter signed the Mental Health Systems Act, which provided grants for community mental health clinics, one of many achievements credited, at least in part, to his wife's advocacy in the U.S. and globally.

Mental health as a basic human right is one of Rosalyn Carter's legacies.

On the subject of mental health, Mrs. Carter took part in a forum at the JFK Presidential Library in November of 2010.

ROSALYNN CARTER ON THE MENTAL HEALTH CRISIS | JFK Library

Thank you for all the responses on the renaming schizophrenia post. You all brought up excellent points and I don’t disagree with anyone’s take. Most if not all people who responded (including myself) were in favor of keeping the name as it is, and it’s easy to understand why. Here are just a few reasons people expressed in the comments of that post:

Renaming the disorder doesn’t change the core issue, which is the stigma surrounding the symptoms of schizophrenia. Renaming feels like running away from the core issue instead of confronting it.

People are going to be sanist regardless of what the name is, due to their preconceived notions of the illness.

Schizophrenia is not a bad word. Changing it would feel like trying to distance ourselves from the negative connotation the general public has given to schizophrenia. We should instead be focusing on removing that negative connotation.

Educating people and speaking up about our experiences with schizophrenia will do far more to destigmatize it than renaming it.

It will take a very long time for people to get accustomed to a new name, and changing it may just cause confusion. (Another example of this would be DID, a lot of older folks still refer to it as ‘multiple personality disorder’.)

I want to play devil’s advocate for a moment, and share some reasons for being in favor of changing the name. Just to offer a different perspective in case anyone hasn’t considered some of these.

The term “schizophrenia” is a bit of a misnomer, as it means “split mind.” Some people find this an inaccurate way to define the disorder and would like a better name.

The name has actually already been changed once before. Prior to Eugene Bleuler coining the term “schizophrenia,” the disorder was known as “dementia praecox,” meaning “early dementia.” This change was a little more than a century ago, but it shows that over time people will adjust to a new name.

In Japan, their word for schizophrenia was changed in 2005 to what translates to “disintegration disorder.” As a result of the name change, patients were more likely to seek treatment, as they were not ashamed of the name of their diagnosis. (x)

Regardless of which side of the coin you fall on, I think we can all agree that the general public still has a lot to learn about schizophrenia. No matter what the name is, there is a huge stigma attached to the disorder due to decades of poor representation and inaccurate portrayals in the media. Schizophrenia isn’t a bad word, but because of the stigma, people see it as bad. We can either drop the name along with the stigma and start anew, or continue advocating for the acceptance of what we have now. And as a stubborn person who doesn’t like giving into societal pressures, I know which one I’d choose.

Dementia Family Caregiver Educator and Advocate

  Today’s guest is Dr. Brittany Lamb an Emergency Room Physician, Blogger, Dementia Family Caregiver Educator and Advocate, and Owner of B.LambMD. Dr. Brittany  Lamb discusses how important it is to be educated about your loved one’s diagnosis, to have a medical directive, and to be proactive in getting  Power of Attorney for Medical and Financial affairs! Dr.  Brittany discusses her support…

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Post hoc ergo propter hoc might be wrong most of the time, but ...

A couple of days ago, for my birthday, I documented my fourth adverse reaction to a popularly-prescribed medication. None of which my doctor had even heard were possible, none of which I was warned about by my pharmacist.

Four times now, I've developed "a whole new disease" 6 to 18 months after starting a new medication. Four times I eventually thought to google my most recent medication and my current symptoms, and found that it was possible that I could be experiencing a (supposedly) "one per thousand" or even "one per ten thousand" person adverse reaction. Four times I asked my doctor to substitute a different medication, and lo and behold, the problem went away. Four fucking times.

And three of those four times, before I did so, I brought up the new problem as part of a physical, in front of a physician who had my whole chart in front of her, then she prescribed a new medication to treat my new symptoms, and I filled that prescription at a pharmacy where the pharmacist was looking right at a screen listing every medication I was taking. They both have degrees in this shit. Why was I the one who had to figure this out?

And also, bullshit that these adverse reactions are that rare. No way in hell I "won" a 1:1000 or 1:10000 lottery four times. And I know why, too: because I'm old, and I'm fat, and that meant that my doctor and my pharmacist "knew" what was causing my "new disease," either my age or my weight.

Skin dying and sloughing off around a recent incision? Yeah, that happens to old people and to fat people, they don't always heal well, just keep applying your antibiotic until it does. (Neomycin allergy: tissue necrosis.)

Mental fog and increasing dementia? Yeah, that happens to old people, nothing can be done. (Wellbutrin: mental fog. Lisinopril: mental fog.)

High blood sugar? Yeah, that happens to fat people, lose weight. (Thiazide diuretic: high blood sugar.)

And all four times, insisting on switching to a different medication solved the problem.

Oh, and that doesn't even count the fact that I was misdiagnosed with "drug seeking behavior" for telling my surgeons that the opiates were having no effect, despite the highly visible clue of my bright-red beard: I inherited the genes that make me totally opiate non-responsive. Count that as a fifth adverse drug reaction, if you like.

(Never mind that I wasn't asking for higher doses, I was telling them to stop prescribing opiates; that was "a clever ruse." And, oh, yeah, one clever nurse practitioner had heard of my condition and recommended I bully the doctor into prescribing Tramadol instead, which doesn't work perfectly, but provides some relief if I don't overuse it.)

So do not believe that an adverse reaction is as rare as the company says it is if and only if it's an adverse reaction that medical professionals are eager to explain away as having nothing to do with the medication, one they're eager to jump to conclusions and blame on age or weight or sex. Because in those cases, you're not measuring the adverse reactions, you're measuring the number of people with those reactions who fought to get them counted.

You have to have noticed by now that we tell people (or at least the white college-educated people) that they have to be "their own health advocates," but how in the hell is that supposed to even work, when we're not the ones with degrees in medicine and years' worth of experience with these conditions?

So, please pass this advice along to anybody who's on any medication for a chronic condition, anything they're going to have to take for years or forever to manage the symptoms of some supposedly incurable condition:

Any time you develop new symptoms, google-search each medication that you are taking, one at a time, followed by the symptom you've just recently developed. If you find any matches, no matter how rare it says they are, ask the doctor who prescribed that earlier medicine to suggest an alternative and try that before you let them add another medication.

Because otherwise you could end up one pill that treats your symptoms, but creates a new illness, so they give you another pill to treat that illness, and it causes a third illness, until you end up on so many pills that you're a walking biochemical disaster site. In fact, any time you meet someone (or if you are someone) who's taking, say, four or more separate medications for symptomatic relief, swap out the oldest medications for alternatives, the ones they've been taking the longest, until you rule out iatrogenic illness. Do not, not, not let them add a fifth, a sixth, whatever medication until you have ruled out adverse reactions. Your very life may depend on it!

And for whatever god damned reason, I wish I knew why, neither your doctor nor your pharmacist will think to recommend this if you don't.

I'm thinking of posting this on medium but I'm genuinely scared. I'd welcome thoughts.

I’m So Terrified To Tell These Stories But Something Needs To Be Said

The concept of victim blame always seemed to be presented as a phenomenon exclusively found in the arena of sexualized violence. As a survivor of several episodes of sexualized violence, I’ve found the experience repeated as the daughter of a deadbeat billionaire father and suffered exploitation by unscrupulous landlords. 

Victim blame has undeniably been experienced by many victims of sexual violence but rather than being a phenomenon of sexual violence, victim blame is a feature of any situation in which the perpetrator has a more political, economic, and/or social power than the victim. No one blames you if you buy a huge TV that’s stolen because you have demonstrated you are of the owning class. However, if you want your landlord to fix a leaky roof, you must justify why you don’t just move somewhere else without a leaky roof.

My father says on one of his own website bios his and assets are worth in excess of two billion dollars. He used addresses in South Africa and the Channel Islands. That my single mom in Denver, Colorado could not begin to navigate international family law is my father’s proof that he was not responsible for child support. So insulated by privilege provided by wealth, I am forced to defend that a father should pay child support. A father who has made hundred of millions in housing while I experienced a decade of housing insecurity and intermittent homelessness. 

Over the years I’ve received variously skeptical and accusatory questions about why my mom didn’t do this or I didn’t do that. The truth is neither of us could find an advocate. Would you want to enrage a billionaire? Would you go out on that limb? No one ever asks how he could live knowing his daughter was unhoused? My half siblings ask why my mom didn’t do something. They don’t confront our father and demand he do something, despite having 700 units in my city. 

The experience of being blamed in a situation I seemed to be powerless in was replicated again in my relationship with my landlord. In September of 2020, in the midst of the pandemic, eviction ban in effect, rent paid through October 5th, my landlord have my utilities cut at the street. I was given nothing in writing but was forced to vacate on the 18th of September. The inspector from the energy company never asked if I lived there. I tried to talk to the police, I was told it was a civil matter and I needed an attorney. I was unable to obtain a call back. No one wants to represent a tenant. 

I was “allowed” to say in a windowless room with a back breaking sectional in half a duplex shared by their adult son, the yard was also shared with another person so I had to coordinate for my dog’s pee breaks. I had been renting a two bed, two bath, single family with a yard, so the accommodations were not equal. 

They moved me into another property without any maintenance between tenants. I couldn’t move in until 6pm because the guy was still in the house. There was a period of 18 hours during which I was renting two houses and not allowed to occupy either and had current leases for neither. 

What had been an agreement to allow an elderly parent to sleep on my couch over the holidays became me providing 24/7 home healthcare because he had just had a “mild stroke” and he had been checked out of the hospital so he spend the holidays at home. Not only did I care for the stroke patient with dementia, I ended up coordinating the in home care professionals and entertaining the family. 

Around that time I fell in love for the first time. Being verbally abused by a man grappling with his own mortality in the company of relative strangers, at Christmas no less, was not ideal as a backdrop to our budding romance. He is a coffee guy and so I learned to make it but I don’t drink it. I made it for everyone. My landlord would visit with her father have an espresso, sometimes and then some breakfast that I made, and then do other things like prep another property. 

Why would anyone allow this? Was she paid? Did she get free rent? No. 

After Christmas, my beloved having vastly misjudged the power dynamics involved, gently informed my landlord that I wasn’t able to get any of my own work done and was too nice to say so. He also asked if she had a steam cleaner, this was because I was not comfortable laying down the law vis a vis use and changing of urinary and fecal incontinence products. He was able to do it but would belligerently insist it wasn’t necessary. Within 24 hours she was threatening housing. She was offended that I suggest my dog couch was soiled by her father, even though it’s why he was ostensibly not in her 5 bedroom home across the street.

I have talked that all through with a number of attorney’s intake people I’m asked again and again why didn’t I? Get help. I tried. I was unhoused from March 2019 to October 2019. My housing is everything to me. I am not being dramatic when I say I would rather die than lose my housing. That’s the answer. Why did I allow that and all the other horrifying things? Because of existential extortion. 

Power assures your destruction if you try to fight it. If you’re a victim of sexual violence you face further violation and there’s a like 90% chance the perpetrator won’t even be charged. Nor have people stopped blaming the victims of office harassment for the consequences suffered by their harassers. If you have a legitimate grievance against the billionaire class, you may not be a daughter but you could be a caterer that didn’t get paid for a society wedding or a gardener or a tenant, that you simply can’t afford justice. Maybe someone wields power like housing or income to get more. 

We as a society need to broaden our recognition of when victims of power abuses are demanded to justify how they’ve coped with their situation. The demand for explanations always seems to look down. Power does not expect questions and they rarely seem to come. 

Again I see parallels between my sets of experiences. When I had a particularly brutal encounter, I played nice all the way until he was in a lyft and via text for months after. I didn’t want him to come back. I also feared his confidence. I was sure that, despite him needing to hold me in place, his assuredness I wanted what happened would convince a third party. My mom she feared him taking me in spite, she convinced herself I was her choice so solely her responsibility and his marriage needed protecting. With my father, well the fact that he hasn’t treated me like one of his children has made people assume I’m lying. I’m something he has gotten away. The housing is an undecided struggle but terrifying none the less. 

I’ll leave you with image…Coffee guy left and never came back. He knew something was up and bailed before he had to know and pretend to care. I’d had a miscarriage and didn’t know how to talk about it because I hadn’t known prior to miscarrying I was pregnant. I couldn’t do anything for months. I missed that had once again conceived in our last days and then miscarried a second time. In one brief moment outside my landlord saw me and told me she missed the coffee in a way that made it clear she had wanted me to go on making her espressos. I’ll remind you I don’t drink coffee, the coffee stuff was his and I was grieving a pregnancy, my first love and a future that seemed so real to me I could see it when I closed my eyes. 

I feel like going vegan can be easy for some people but I also think a lot of people already have so much else to worry about, so they just don’t feel able to have the time or energy into researching veganism, learning new recipes, etc? It’s not that going vegan in itself is hard but if you have 100 other problems in your life sometimes small things can seem like too much?

also I feel like for some people, food may be the main source of pleasure in their life. So giving up their favourite foods can feel like a major sacrifice. I’m vegan myself, and I’m not saying this is a good enough reason not to be vegan, I don’t think it is, but I can see how it can be difficult for people - ofc I realise the animals’ suffering is far greater than the person giving up their favourite food, but to them, it might feel like a lot - and being completely honest, as a vegan, I don’t think many vegan alternatives to products taste as good as ‘the real thing’.

Idk I just think of my grandma when she was very old with dementia and not able to do much really - but she loved her food. I’d have found it really difficult to deny her non vegan food that she liked? what are your thoughts?

What you’re describing here is valid, but it’s also essentially just a description of the challenges of living an ethical life. There are always barriers to doing the right thing, and doing the wrong thing is usually quite a lot easier - that isn’t at all unique to veganism. Yes there are challenges and other things to worry about, but everyone should be doing their best to live well and to not cause harm when you can avoid it.

There are for sure people who experience real barriers to eating plant-based, some moreso than most, from health issues to food deserts, but there is really nothing unique about food when it comes to ethical decision making. We can advocate that people should do the right thing while acknowledging that doing so can be difficult.

I don’t think we need to be able to argue that vegan food tastes just as good (even though I think it does), or that it’s super easy for anyone to be vegan, we just need to be able to say that not exploiting animals and destroying our planet in the process is the right thing to do. It’s up to all of us as individuals to figure out our situation and how much we’re able to do the right thing in any context, but even if we’re not able to do it, it doesn’t change the fact that it is the right thing.

All veganism asks of us is to do our best, precisely because it is a moral principle and not a diet. Making ethical decisions will very often be more difficult - its easier to not think about companies you support, to not reflect on your own prejudices and to never challenge anyone else on theirs. You may have valid reasons for doing the wrong thing, hurting others to benefit yourself, for making other lives more difficult to make yours easier, but it being understandable and there being valid reasons behind it doesn’t make it any less wrong.

The writer-activist Wendy Mitchell, who has died aged 68, won hearts and minds by advocating for living positively with dementia. She was determined to remind people that those living with the disease are not “sufferers” and that there is “a beginning, a middle and an end to the disease – with so much life to be lived in between”. She held strong beliefs that people should have the right to choose their own death, and campaigned for assisted dying laws in Britain – one of the subjects of her final book.

Wendy wrote three bestsellers, Somebody I Used to Know (2018), What I Wish People Knew About Dementia (2022) and One Last Thing: How to Live with the End in Mind (2023) – I was fortunate enough to be her ghostwriter on all of them. They were translated into dozens of languages, and her advocacy work won her honorary doctorates from Bradford and Hull Universities, and a British Empire Medal last year.

When I met Wendy in 2016, she was writing a daily blog, Which Me Am I Today? ,which she had started simply to document her day-to-day life, though it soon had tens of thousands of followers. After her diagnosis of young-onset vascular dementia and Alzheimer’s disease in July 2014, Wendy was shocked at the lack of information and support available to those newly diagnosed.

In Somebody I Used to Know, she wrote about her own depression at the diagnosis, until she realised: “I was still the same person I had been the day before my diagnosis.” She threw herself into academic and medical research, speaking to doctors, nurses and other professionals. What I Wish People Knew About Dementia chronicled how the disease affects different parts of daily life, aside from memory, including taste, smell, hearing, gait and vision.

Her tips, such as draping a scarf over a flat-screen television to avoid it looking like a hole in the wall, or sticking photographs of clothes on wardrobe doors as a reminder of what is inside, made all the difference to those who were newly diagnosed.

Wendy enjoyed finding ways to outwit dementia. As she wrote in her final blog post: “Yes, dementia is a bummer, but oh what a life I’ve had playing games with this adversary of mine to try and stay one step ahead.”

Born in Wakefield, West Yorkshire, to Violet and Ken Draper, Wendy described growing up in their pub in her first memoir. She went to school in Pontefract and was a keen sportswoman, excelling at tennis and running – after her diagnosis, she swapped running for fell-walking in the Lake District. She described the Lakes as her “paradise” and Friars Crag as her favourite place to sit.

Wendy raised her two daughters, Sarah and Gemma, alone after her divorce from their father in the early 1980s (although she continued to use her married name). For many years she earned her living as a cleaner, until she started working in administrative roles within the NHS, gaining promotion to become a non-clinical team leader. Eventually she was forced to retire from her job as a rota manager at Leeds general infirmary, and later campaigned for workplaces to support those newly diagnosed with dementia to continue working: “We don’t lose all our skills overnight just because of our diagnosis,” she said.

In early retirement Wendy discovered other skills, including writing, and enjoyed her “trundles�� around the village of Walkington, in the East Riding of Yorkshire, where she lived, capturing local wildlife with her trusted Nikon camera. She revelled in the fact that villagers unaware at first of her diagnosis described her as “the lady with the camera”.

She met many dementia advocates, and was inspired to take up campaigning when she heard Agnes Houston talk at a women and dementia event in York. Wendy became a guiding light to others, a regular contributor at Innovations in Dementia and York Minds and Voices, part of the DEEP UK Network of Dementia Voices.

She gathered her own formidable team of friends living with dementia, who produced video content chatting about the issues they encountered and nicknamed themselves “the Four Amigos”. She advised on the BBC TV series Casualty and the movie Still Alice (2014), and received a mention from the Hollywood actor Julianne Moore in her Bafta acceptance speech.

Wendy raised tens of thousands of pounds for Dementia UK with her annual “wacky challenges”, as she called them, daredevil stunts that included walking across hot coals, skydiving, wingwalking and, last autumn, a swim in Derwentwater after she was forced to abandon her abseil down the Leadenhall building in London (the “Cheesegrater”) due to technical issues (theirs, not hers). She insisted that she was fearless after her diagnosis, having already faced the worst.

Wendy was a force of nature, but dementia made her life harder and harder. She ended her life by voluntarily stopping eating and drinking (VSED), a subject she discussed in One Last Thing. In her last blog post, written in advance, in which she announced her death, she said: “Adapting to this life with dementia is over, but I don’t consider dementia has won, as that would be negative … it’s me calling time on my dementia – checkmate – before it plays its final move.”

She also pleaded for people to campaign for assisted dying laws in her memory.

Reviewing Somebody I Used To Know for the Sunday Times in 2018, Jackie Annesley wrote: “The world could do with more Wendys.” I couldn’t agree more, but there was only one wonderful Wendy, taking people by the hand and showing them how to live a good life with the disease in tow, or indeed how to talk about the end of life so they can instead focus on living.

Wendy is survived by her daughters.

🔔 Wendy Patricia Mitchell, writer and campaigner, born 31 January 1956; died 22 February 2024

Daily inspiration. Discover more photos at Just for Books…?

Yo fuck that guy. Don’t listen to him. Dude blew up over a wiki article. Not your words. Unreasonable to get mad at ppl over knowledge, even if they don’t like it. Hateful symbolism breeds more hate sadly. Being mean to your own community tho…isn’t punk. Don’t let ‘em get you down.

I feel like. People expect you to be “perfect” if you run a punk blog. You have to follow SO many rules. Like. And I’ve said this before. You’re

Not allowed to eat certain places (Chick-Fil-A)

Not allowed to shop certain places (Hobby Lobby)

Not allowed to watch certain things (Harry Potter)

Not allowed to buy certain brands (Nestle, Nike, etc.)

And all of these are for good reason! Like I fully support these things. But people get MAD when they find out that you even ASSOCIATE with people who do these things. And it’s. Over the top.

I’ve said before that I have a developmentally delayed family member that works at Chick-Fil-A and the idea that I should like “disown” her or whatever because that’s a job where she feels safe and welcome ESPECIALLY after being bullied out of other jobs she’s taken is like. Absurd.

What I said in my tags was basically “Over the years I’ve had conversations with my mom about some of the memorabilia she likes and has and wants and how some of it is problematic” and people immediately jumped to “if your mother has memorbelia from a band (Motörhead) she used to listen to that has a symbol that was also used in Nazism (something she probably has NO idea about) that I should just kill her”. You know what I didn’t say?

My mother is probably autistic and also has some form of dementia going on. You know why it’s taken me years to get to this point? Because she doesn’t always UNDERSTAND things right away because she is PROBABLY AUTISTIC. Like yeah we LOVE advocating for killing people who are probably autistic and probably don’t understand Why Things Are Bad until someone (me) has WORKED WITH THEM and PUT THE EFFORT into taking the time to TEACH THEM about WHY things are bad.

Also? Why are we killing people that are willing to change? Like what the fuck? Take a look at yourself and ask yourself why YOU don’t think YOU’RE part of the problem with the punk community for advocating that we kill people who has a symbol on something they don’t even realize is bad because it’s a literal band logo.

And the post in general was me LITERALLY explaining to people who (like my mother!) might not UNDERSTAND why this symbol is bad, putting in the effort to teaching young punks who might not know what to look out for and maybe don’t know who and what to ask by gathering a source (Wikipedia) and condensing it down into an understandable and quick read to TEACH the history of WHY something is bad.

OP is part of the problem.

Link to post where OP was so fucking stupid they couldn’t even understand I was citing a Wikipedia article + screenshot of the tags they left me telling me to kill my autistic mother with dementia for context