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seeing people my age talk about how scared they are of memory loss, which they only associate with old age, is so surreal to see as a 24 year old who has actively experienced memory loss for a long time now
there are causes for memory loss besides dementia and alzheimer’s, i hope y’all know that. dissociative disorders, trauma, brain injuries, thyroid problems, even just stress and lack of sleep can fuck up your ability to store, process, and access memory. and that’s just a few of the many causes i can think of off the top of my head right now.
please stop treating disabled people like some scary “other” that you might become only in the distant, decades-away future. we are your age, too. you may become one of us sooner than you know. stop acting like memory loss marks the end of a life, when so many of us have so much living left to do!
Lots of beautiful and personal and profound stories being added on to my anecdotes of dementia patients, and these are good and important and I love them, and yet... they're not what I wanted the post to be about.
I'm not so much interested in dementia patients as dispensers of profound life advice, nor in the family love and grief surrounding them (though I have every sympathy for it and I know it is immensely hard). I'm interested in dementia patients as a marginalised population. Often medically neglected, often institutionally abused. Frequently dismissed and trampled on at every level. It's ableism, against a population almost definitionally unable to fight it.
Providing care for people who can't understand it and don't want it is complicated and ugly. I don't have big solutions and I'm failing to sketch out even the vaguest shape of the huge problems. But at least I can take one tiny stance for how I interact during the time I have with them: that they are people, deserving of respectful engagement in both being spoken to and being listened to.
People with dementia are worth talking to, even when they won't remember afterwards that you ignored them.
People with dementia are worth talking to, even when they can only follow a couple words at a time. Sometimes they surprise you and you get a funny or touching anecdote out of it, but far more often they do not; the mundane times are still worthwhile.
People with dementia are worth talking to, even when they talk in one unending sentence at 500 words a minute looping around the same three phrases because they don't remember when their sentence began.
People with dementia are worth talking to, even when they never talk at all.
People with dementia are worth talking to, even when they are in pain. Distressed. Angry. Crying. Shouting. Screaming. Violent.
Nobody should be obliged to suffer the violence, but neither should the person be obliged to suffer their own distress alone forever. There's a tension there! There isn't an easy answer! Both things are true and it's exhausting and hard and painful and loud and still we must wrestle with it, we must not write them off. Often they are trying to communicate their pain, though often their pain cannot be solved.
People with dementia are worth talking to. They are the same people as ever they were - they haven't died, they aren't lost or hidden. There is a continuous thread from the past to now.
Sure, they've changed. So have you.
I'm mad. Earlier today I witnessed a car turn a corner and a front wheel popped right off, rolled across the street, and bounced gently off my car. I got out of my car and discovered the driver had dementia, so I took him across the street to a shop where he could wait out of the cold while folks tried to get in touch with his family. After 20 minutes of playing phone tag with emergency services, nonemergency services, and cops, they only agreed to come out because his car was blocking traffic. At that point he had wandered out of the shop "to walk home." He was wearing pajamas. What a broken fucking system.
mutual aid request for grandma james
TL;DR — If my fanfiction has ever given you even $1 worth of entertainment or happiness in life, it would truly mean the world if you would consider putting that dollar toward my mom.
As my long-time followers know, my mom has an aggressive form of dementia. She was diagnosed at 57 and I turned my life upside down at 26 to take care of her. We're poor. Like, we live in a trailer park (no shade to trailer parks; LMDW [love my double wide]). And we need help, especially as she deteriorates. There are a lot more personal details in the gofundme itself if you're interested in helping through sharing or donating.
My mom, Deb, is a lesbian who came out late in life, leaving my narcisstic father to pursue her life for the first time in her 50s after living as a fundamentalist christian for most of her life. She has given countless dollars and hours to the queer community as a volunteer, donor, therapist, community organizer, and more. She is, really and truly, the best of the best as human beings go.
If everyone who follows me on tumblr dot com donated $1, it would fill almost the entire first goal.
My mother, Deb, was diagnosed with an aggressive dementia (FTD lvPPA) at o… Jay Berghuis needs your support for Support Deb’s Care in Her Ba

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A vaccination to prevent horribly painful shingles may offer an extra benefit: New research suggests it might lower the risk of dementia, to
WASHINGTON (AP) — A vaccine to fight dementia? It turns out there may already be one – shots that prevent painful shingles also appear to protect aging brains.
A new study found shingles vaccination cut older adults’ risk of developing dementia over the next seven years by 20%.
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