[-] 108beads@lemm.ee 6 points 1 year ago

There are a number of resources pinned on this community for those in need of extra help.

[-] 108beads@lemm.ee 6 points 1 year ago

I've read about a variation of this and do it faithfully! Except you have to be driving under an overpass with train tracks, and there has to be a (preferably moving) train on the tracks above you. The idea is that when you press your hand to the car's ceiling, you get to send a wish to hitch a ride on the train going by above you. The moving train takes your wish along with it, giving it quicker travels, more exposure to the world, and thus more opportunities to be fulfilled.

[-] 108beads@lemm.ee 6 points 1 year ago

Mod here. Please flair as NSFW. See pinned post from VubDapple.

We've got a few pinned posts with a wide variety of resources; please check these to see if any look promising. More importantly: use them. Call 988, or a warm-line. You've already taken the first step by posting here. Keep going.

I fully agree the two avenues you've reached out to so far can be useless. Formal, one-on-one treatment lags massively beyond need--every news outlet runs stories, citing politicians who allocated big bucks to resources... which take years to get anything accomplished, and likely get bogged in red tape, slush-fund budgeting so you and I get nothing.

People around you often play comparative games: "ooh, let me tell you about MY issues; blah, blah blah; you see? they're worse than yours, so just suck it up."

However, I disagree that there's nothing special about you, or that you're taking resources someone else might need more. You matter, more than you know. You deserve, as much as anyone, love and help.

There are some good responses already... far less than 5 months.

Two additional strategies. (1) Meditate. If you're not sure how, let me know; I can suggest some good free starting points. It may seem stupid, irrelevant at first. But I've found it's a remarkable way for me to know what I'm feeling. If I can sit with the feeling long enough, sometimes I can figure out why I'm feeling that way.

(2) Reach out, spread good. It doesn't have to be dramatic, like "helping someone in more need than you are." Sometimes, it's letting someone trying to make a left turn into traffic the space to make that turn. Giving a compliment to a random stranger.

I struggle with depression too. I've earned it--my partner with Alzheimer's is in a nursing home I call "Roach Motel" it's so badly run. (No, this is not "my problems are worse than yours.") I visit daily. I brush her hair, hold her hand, holler for aides when they ignore the call bell--I make a difference in her life. I like some of the aides, and I think others are pure a**holes. But I bring in inexpensive snacks, give compliments when I can, and treat people with a crappy job with as much respect and kindness as I can muster. Some days, I REALLY don't want to visit... but I make myself. And always, when I leave, the depression has lifted a little.

[-] 108beads@lemm.ee 6 points 1 year ago

Been through grad school, 1980s. Survived. Tenured. Emeritus. Retired. I'm sure it's only gotten worse. The whole thing is set up to weed out… basically a whole bunch of people, because higher ed is not providing enough jobs for people with PhDs. (Yes, I know there are advanced degrees that don't lead to an academic job.) And it's set up to provide a slave labor force of teachers for undergrad classes. A lot of fine people end up bag ladies, or moving off to organic lesbian goat farms (two examples from my peer group).

And it's functionally a stress test, to find the cracks, before grad students get out in the real world and face the insane demands of a life of itinerant adjuncting, the horrors of seeking tenure, or the other professional jobs that require higher degrees. If they crack after graduating, they can take a lot of other people down with them. (Seen that happen, too.)

That doesn't excuse any of it, not by a long shot. A whole bunch of stuff in this world needs to be reformed. But: it does offer a chance to see that it's only a game—and if the game is something that makes you miserable, you need to find a different game. A game where you can find ways to be kind, and not perpetuate the misery.

[-] 108beads@lemm.ee 7 points 1 year ago* (last edited 1 year ago)

There's a saying in the caregiving community, those of us keeping loved ones with dementia and various disabilities afloat, alive and (hopefully) thriving.

Don't set yourself on fire to keep your loved one warm.

Meaning, if you don't take care of yourself, you cannot help others. You could set yourself on fire, but the flames go out quickly, and then you're a crispy, crunchy mess—and both of you are far worse off than when you started.

Put your own oxygen mask on first, before trying to help others.

And… sometimes that means saying "no." Which is hard, but necessary.

[-] 108beads@lemm.ee 6 points 1 year ago* (last edited 1 year ago)

You might try this website: https://dontcallthepolice.com/. It lists resources in major cities. I checked several randomly, and all seem to have a "youth" section. When you click on "youth," you may see resources, or you may see "info coming soon."

At the top of that page, there is also a set of "national" listings. There are specific resources for abuse, trafficking, and so on. The most promising general resource seems to be https://teenlifeline.org/. I clicked through to that site, and it appears to have the equivalent of a warm-line staffed by other teens.

[-] 108beads@lemm.ee 6 points 1 year ago

I'm first generation American on my mother's side. She came from Germany (from an area now culturally and geographically Polish). I mention that background because I want to be clear that my comparisons to Nazi Germany are not glib or superficial; they are grounded in my family, and my interest in how Hitler came to power.

Germans were hurting from punitive WWI damages. They were humilated, fragmented. They were experiencing inflation such that it cost a wheelbarrow of cash to purchase a loaf of bread. Following Hitler gave the ordinary, disenfranchised people a sense of pride, discipline, purpose. Part of that mental nation-building was identifying and castigating "the others." The Jews, yes, but also communists, people with disabilities, "Gypsies" (offensive term—Romani), homosexuals, anyone not actively "with the program," anyone who dared to raise an eyebrow in disagreement. Or those failing to give up their pot-roast Sunday dinner to a gang of brown-shirts who demanded entry into your farm home and took it in the name of The Cause. (True story.)

Americans (and the world as a whole) are experiencing scary, looming issues. Income inequality that continues to increase exponentially. Impending climate catastrophes. Failure to reckon with the legacies of slavery, First Nations colonization and extermination programs, Japanese internment, etc., and failure to reckon with boomerang echoes of that history. Social media monopolies that silo us off in echo chambers, content to ignore consequences as long as profits keep flowing. A global plague, the first of many, which everyone knew was coming, but was met with bungling lack of transparency.

I think we're ripe for fascism. People are retreating into tribal groups. We're defensive, trying to hang onto shreds of dignity by asserting membership in this or that group, and ignoring. If the tribe is deluded, we'll find a way to mentally sand off or ignore the rough parts, because it's become so important to find a place to belong, a place that makes sense. Even if it doesn't make sense. ("The Ones Who Walk Away From Omelas," 1973 short story by Ursula K LeGuin. Can be found online.)

I don't have an answer. I'm scared too. I do try to read and listen broadly. I want to find out why people who see things differently think as they do. Recognize what we hold in common—base assumptions. Asking "why do you mention/think that?"

I too need alone-time and space. And I look for folks who can understand my perspectives—just as important to have support as it is to hear out those who disagree. Balance.

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Racial disparities in drug trials, and disparities in overall medical care, among other factors, make the recently-approved Alzheimer's break-through drug lecanemab less likely to benefit African Americans.

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submitted 1 year ago by 108beads@lemm.ee to c/disabled@lemm.ee

Interesting read on how media portrayal of people with disabilities shapes perception of them as "deserving" of accommodations under ADA, or not.

[-] 108beads@lemm.ee 5 points 1 year ago

No need for apology! In fact, it seems gut microbiome may be related to a number of brain or mental health issues. I'm especially interested in Alzheimer's—there's some evidence of a relationship, although exactly what seems very fuzzy and (as yet) ill-defined. I know that when I'm having digestive issues, I am definitely out if left field.

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submitted 1 year ago* (last edited 1 year ago) by 108beads@lemm.ee to c/neurodegdissupport@lemmy.world

From their "about us" page: "'Being Patient' is an editorially independent news and community platform that aims to create clarity around complex health issues and be a trusted, accurate source of information for the people impacted by a disease."

Some good, apparently well-vetted info on Alzheimer's and related dementias. Emphasis on personal narratives from people with dementia, and from caregivers.

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"The Vanishing Family." This is a "gift" link, so you shouldn't hit a paywall; let me know if you have any problems.

[-] 108beads@lemm.ee 5 points 1 year ago

Grew up in the 50s and 60s. Had a pediatrician who chain-smoked, and had ashtrays all over her office literally overflowing with butts.

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New test for Alzheimer's (www.news-medical.net)
[-] 108beads@lemm.ee 6 points 1 year ago

Came here to say "sewing." And a little beyond buttons and tears—hems, darning a sock, simple alterations. And sewing a few simple garments will not only net you those clothes, but an understanding of how garments should be constructed, so you can look at ready-made clothes and tell if they're likely to be durable, or fall apart the first time you wash them.

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submitted 1 year ago* (last edited 1 year ago) by 108beads@lemm.ee to c/neurodegdissupport@lemmy.world

So my partner with Alzheimer’s is in a skilled nursing facility. She wouldn’t walk or exercise for several years; fell repeatedly; and after a stint in the ER, flunked out of rehab. She’s now in long-term care on Medicaid, in a place which I will call Roach Motel because (you know) “roaches check in, but they don’t check out.” They want her money. I am physically unable to care for her at home 24/7.

I don’t know that I could have gotten her into a better place than Roach Motel from a hospital ER. The ER was adamant: “we need to kick her out NOW, because she’s taking up space and we can’t do anything more for her. You have two choices, and they’re both wretched. Roach Motel is slightly less wretched.”

I didn’t know much about Roach Motel, but I document here how I was able to find the skeletons in their closet, in hopes someone with more time to consider can avoid voluntarily selecting a toxic waste dump for their loved one. Presumably, this roadmap will work for assisted living, memory care, and other types of care facilities too. This strategy works for the US; I believe it should be transferrable to other countries.

Yes, ideally you should visit, do the sniff test (does eau-d’-urine waft through the halls?), ask questions (do you treat patients with respect?), sample the food (it’s all institutional, but is there some semblance of palatable, recognizable food items?) However, good places will be honest, and garbage dumps will show-and-tell you what they want you to see. They will appear similar. How to tell the difference?

You can coax a lot out of online searches.

First, start with the facility’s full proper name; add city and state if necessary. Search online. You can use Google’s search engine for this first part—but for later searches, I suggest something like DuckDuckGo. Reason: some search engines accept pay to promote good reviews, suppress bad ones. It’s called SEO, “search engine optimization.” You want to see what they will pay not to show you.

Your first search results will show you the puff pieces: the glossy-brochure language, promotional articles, glowing (likely paid) customer reviews.

Next, add the following to your search string: "Medicare Medicaid." It doesn’t matter whether you have either in your healthcare portfolio. Both programs review and rate facilities based on complex metrics. Scroll through the resulting pages to see what the criteria mean, what they are based on. Pay some attention to consistency of ratings—if one month, they are at 5 stars (out of 5), the next month jump to 3, back up to 4, and a month later drop to 2, then they’ve got issues.

Next, use the facility name and add strings such as "complaints," or "reviews." The Yelp-style ratings system will always skew to extremes; they elicit comments from people who are either deliriously happy, or inconsolably angry. Take both with a grain of salt. Sometimes, a patient’s medical issues will overwhelm even the most meticulous of care, and that can leave loved ones looking to assign blame. But if you see a bunch of ambulance-chasers boasting of success “suing the pants off” of your facility, it’s not a good sign.

Next, using facility name, switch over from the “general” tab of your search engine to “news,” and sort by “most recent.” What does recognized journalistic reportage have to say about your facility? You may find reports of union strikes, egregious heath and safety violations. Or you may find the C-suite honcho or top manager bragging, prognosticating a bright future for happy patients with excellent care. Are the honcho’s comments realistic? Does it appear he or she thinks an increase in Medicare or Medicaid per-diem payments will fish them out of their current financial morass? (Ha! Dream on!) Read between the lines; why is this piece of reporting “news”? What is the honcho responding to? Bottom line, what pending financial instabilities do you see? (If they have problems looming, those problems won’t be reported; they’re speculation, not yet actual news. Make some intelligent guesses of your own.)

Finally, use the facility name and add "owner", searching with the “general” tab. The dirty little secret of most nursing homes is that they are for-profit entities, and that they are owned by a handful of people who are very well-off, and who bring family and friends into the business with them. Whatever their values, they will likely be applied to (and visible in) other facilities in which owners have s share.

From what I’ve seen, there may be a dozen or so owners. Each one owns a percentage share of your target institution, and a percentage share of many other institutions across the country. They’ve got empires going. One I read about purchased a whole airline for his son to play at running—where did that money come from?

Pick a few names from the top of the list, and start online searching those names. (If names are common, you may have to toss in a few qualifiers like “nursing.”) The people at the top have the biggest percentages. Chances are, you’ll start seeing other names appearing on the sites you turn up—the other co-owner investors listed as owners.

What kinds of complaints, fines, lawsuits, violations, fraud, allegations or similar shenanigans do you see? The owners of your target facility almost certainly have shares in other facilities that have done bad enough things to become internet-searchable. If your target facility is not currently under the gun, that’s not necessarily good news. Chances are excellent they simply have not been caught and publicized yet. An owner of multiple facilities is not going to treat your target facility any differently than all the others they own.

And for 50 extra bonus points: set up a Google Alert. Search online for "Google alerts." Sign in to your Google account. In the dialog box “search for,” enter the full name of your target institution. My preferences from drop down menus (set to default unless otherwise indicated): how often—once a day; region—US; how many—all results. (If you get irrelevant info, you can modify these settings later).

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I was on Farcebook earlier today, and caught not one, but two ads using the hashtag #dementiaawareness. (I was looking for something else.) I reported them to Farcebook as lies, and they disappeared, so sadly I can't share screenshots.

But basically, y'all know the drill: "Did you know you can cure dementia with this one simple thing?" I had to double-check—yup, it was "sponsored content." Someone paid to put it there.

Clicked through to a long rambling bunch of yadda yadda, coming from a Very Important MD with Very Big Credentials (you can read that in tRump's voice if you wish…), who has seen through the falsehoods of conventional therapies. Yes, all of the side-effects which the (white, male, pretty-boy) doctor lists for donepezil are truthful. Similar padding and truthful (but partial) information about other established medical interventions.

After pages and pages of half-truths, we get to the point: all you have to do to permanently reverse and cure dementia is buy our cannabis gummies! Here is a picture of Jane Doe with dementia, and here is a picture of Jane Doe after just one week taking our gummies! Wow!!!

[-] 108beads@lemm.ee 6 points 1 year ago* (last edited 1 year ago)

"I also understand how that could be seen to go against the point of federated social media in the first place…"

Federating with Meta is different from federating with individuals. It's like letting corporations be treated the same as natural persons for the purposes of voting in political elections and exercising other civic participation rights.

Natural persons may have a variety of motivations for federating. Corporations have only one: to increase profit.

And please don't say "federate now, revisit later if needed." Recall the fable about the scorpion and the rabbit facing a raging flood. Said the scorpion, "oh please, rabbit, let me ride on your back as you swim across." Rabbit said "no, you'll sting me and I'll die." Scorpion said "no I won't; we're both in danger; I have children at home; we both want to live." Rabbit said "okay, if you promise not to sting me." So scorpion climbed onto rabbit's back, and halfway across the flood, scorpion gave rabbit a lethal sting. Rabbit asked why, and scorpion shrugged; "you knew what I was when you let me onto your back."

[-] 108beads@lemm.ee 5 points 1 year ago* (last edited 1 year ago)

Yah, I really don't want to see Lemmy become infested with p*nis enchancement ads, pseudo-science slime, and watch Russian bots commandeer US & other elections (yet again).

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Alz.org is the website for the US based Alzheimer’s Association. They focus primarily on Alzheimer’s, but also contain some material on other forms of dementia.

The site interface is designed to be easy to navigate for those who are not medical professionals, but digging through some of the menus will get you to refereed journal articles and other professional resources, as well as granular suggestions for caregivers seeking to offer dignified, appropriate levels of support for loved ones.

Of special interest: their phone hotline, available 24/7. From my experience, they seem to have a vast phone-tree of specialist consultants—so you can call in to vent, ask for tips and strategies, or to get pointed in the right direction for independent research.

I was especially impressed with their ability to get me connected to local resources—lists of adult daycare, nursing homes & memory care, checklists on how to evaluate offerings, and so on. So often, I’ve asked for help through insurance company reps, or doctors’ offices, or dug up stuff myself online—only to find it’s outdated or contains information that isn’t useful.

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I tried posting on a Discord for people with/caregiving for those with dementia. Got a nibble of interest, got pinned by the mod, wrote out detailed instructions on how to get on Lemmy and find us… Possibly the geek level killed interest.

The Discord is pretty quiet, except for incoming bot posts, an IFTTT feed directly from r/dementia to the Discord. (It's one-way, we can see them on Discord, but they can't see us.) Is it worth posting in Reddit, do you think? I'm wondering if I even mention Lemmy, whether I'll get permabanned from Reddit.

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submitted 1 year ago* (last edited 1 year ago) by 108beads@lemm.ee to c/neurodegdissupport@lemmy.world

Thank you, ZenGrammy! I don't have the time or the tech chops, and was hoping someone would start a community like this. I'm a Reddit refugee who was active on r/Dementia, r/Alzheimers, r/Caregivers, etc. (Edit: and a handful of Discords, an Alz.org Zoom group… lots of support!)

My sweetie—I call her my "Beloved Dementor"—was misdiagnosed for a good decade with psych problems. She does have those (anxiety, depression), but PCP & therapists brushed off refereed medical journal articles I tried to show them, as well as the info that Alz runs in her bio-family.

She's only at roughly stage 4 cognitively. But the effort of masking for so many years, the Alz erosion of executive function (motivation, cause/effect reasoning), the personality reversal from outgoing to shrinking violet—made her decide to stay abed for several years. Lost muscle tone from that, plus Alz-related apraxia and a Parkinsonian tremor.

Inevitably she lost ability to walk, fell, and from ER went to a Roach Motel of a skilled nursing facility where she flunked out of rehab. Incontinence and reliance on a Hoyer lift make it impossible for me to adequately care for her at home—my arthritis and age (pushing 70), inaccessible house, lack of backup community if I fall ill, shortage of aides, and her self-imposed social outlets all point to "nope, not gonna work, at least not longterm."

She's still my sweetie of 26 years. I visit daily. &

Best resources: Alzheimer's Association (Alz.org), and the book The 36-Hour Day.

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