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#caregivers

2 posts2 participants0 posts today

Me w/Dr. Matthew Lefferman, a kind dr. He specializes in #geriatrics & goes to the places where his expertise is needed. Here we are @ the Kensington Redondo (he's holding my book, Finding the Right Words: A Story of Literature, Grief, and the Brain), where we watched "Taking Care," a beautiful film honoring Adele Miller, mother to Lauren Miller Rogen & mother-in-law to Seth Rogen. Their foundation, HFC, supports #caregivers of people with #dementia.

#EndAlz
#LaurenMillerRogen
#SethRogen

Me w/Dr. Matthew Lefferman, a kind dr. He specializes in #geriatrics & goes to the places where his expertise is needed. Here we are @ the Kensington Redondo (he's holding my book, Finding the Right Words: A Story of Literature, Grief, and the Brain), where we watched "Taking Care," a beautiful film honoring Adele Miller, mother to Lauren Miller Rogen & mother-in-law to Seth Rogen. Their foundation, HFC, supports #caregivers of people with #dementia.

#EndAlz
#LaurenMillerRogen
#SethRogen

"[Dr. Flatt's] work focuses on military veterans & & LGBTQ+ #veterans & their risks of Alzheimer’s & #dementia & the obstacles #caregivers face in providing resources & care." How cutting funding for #Alzheimer's research (& #cancer & all the other #NIH/#NSF cuts) helps anyone/improves government efficiency is beyond my ken. It doesn't of course. It's an attempt to bring us to our knees. Let's not bend.

8newsnow.com/news/local-news/f

#Diversity
#Equity
#Inclusion
#EndAlz
#TransRightsAreHumanRights

"[Dr. Flatt's] work focuses on military veterans & & LGBTQ+ #veterans & their risks of Alzheimer’s & #dementia & the obstacles #caregivers face in providing resources & care." How cutting funding for #Alzheimer's research (& #cancer & all the other #NIH/#NSF cuts) helps anyone/improves government efficiency is beyond my ken. It doesn't of course. It's an attempt to bring us to our knees. Let's not bend.

8newsnow.com/news/local-news/f

#Diversity
#Equity
#Inclusion
#EndAlz
#TransRightsAreHumanRights

Please join me for this #UCSF event, Dementia Stories for Impact. We'll be exploring the value of sharing stories of #dementia. How narratives combat #stigma, educate readers & #caregivers about #brain health, offer #empathy, & help others w/#grief. Dr. Bruce Miller & I will discuss the memoir we wrote in honor of my father, Jerry, who died of early-onset #Alzheimers, & Dr. Luis Martinez will discuss his children's book about dementia.

gbhi.org/events/narrative-show

#EndAlz
#Alzheimer'sAssociation

Three generations of family members looking through photo album
Global Brain Health InstituteGlobal Brain Health Institute | Narrative Showcase: Dementia Stories for ImpactStorytelling transports us into the lives of others. A story raises awareness and reaches across identities. A story creates connections and emphasizes areas for change. In discussions about dementia including the complexities of Alzheimer’s disease and other neurodegenerative conditions, the art of narrative is a powerful global tool. Join us for the second webinar in the Narrative Showcase: Dementia Stories for Impact series, titled: "Dementia, Life Course, and Storytelling." The webinar will highlight two approaches in narrative to bring attention and understanding about dementia. First, writing toward an adult audience through a personal narrative as a daughter and having the scientific context to understand the changes in her father’s brain in the book written by Cindy Weinstein and Bruce Miller, Finding the Right Words. Then, writing for a young audience of English- and Spanish-speaking children, and making the message accessible through a beloved animal’s point of view in the book written by Luis Martinez, Pipo, Don’t Forget Me. Both stories across the life course educate about dementia and advocate for empathy in the light of a debilitating disease. Their stories trace not just the challenges, but also the sparks of hope in the midst of dementia.ObjectivesWebinar participants will: Hear from authors in the neurosciences and the humanities who reach both adult and young audiences Understand their motivations to craft stories about the human experience and changes in the brainLearn how these stories amplify important messages of advocacy and awareness about neurologic health ModeratorsFionnuala Sweeney (Ireland), Journalist & Broadcaster -  Former Anchor/Correspondent with CNN International; Multimedia Editor, Atlantic Institute; Atlantic Fellow for Equity in Brain Health, Global Brain Health Institute (GBHI). Creator of podcast series, Dementia is Global.Oz Ismail, PhD, Director, Scientific Programs, Alzheimer's AssociationPanelistsBruce Miller, MD, Neurologist; Director, Memory and Aging Center, University of California San Francisco; Founding Director, Global Brain Health Institute; Co-Author, Finding the Right WordsCindy Weinstein, PhD, Professor of English, Caltech; Atlantic Fellow for Equity in Brain Health; Co-Author, Finding the Right WordsLuis Martinez, MD, Neurologist; Assistant Clinical Research Coordinator, Memory and Aging Center, University of California, San Francisco; Author, Pipo, Don’t Forget Me

Please join me for this #UCSF event, Dementia Stories for Impact. We'll be exploring the value of sharing stories of #dementia. How narratives combat #stigma, educate readers & #caregivers about #brain health, offer #empathy, & help others w/#grief. Dr. Bruce Miller & I will discuss the memoir we wrote in honor of my father, Jerry, who died of early-onset #Alzheimers, & Dr. Luis Martinez will discuss his children's book about dementia.

gbhi.org/events/narrative-show

#EndAlz
#Alzheimer'sAssociation

Three generations of family members looking through photo album
Global Brain Health InstituteGlobal Brain Health Institute | Narrative Showcase: Dementia Stories for ImpactStorytelling transports us into the lives of others. A story raises awareness and reaches across identities. A story creates connections and emphasizes areas for change. In discussions about dementia including the complexities of Alzheimer’s disease and other neurodegenerative conditions, the art of narrative is a powerful global tool. Join us for the second webinar in the Narrative Showcase: Dementia Stories for Impact series, titled: "Dementia, Life Course, and Storytelling." The webinar will highlight two approaches in narrative to bring attention and understanding about dementia. First, writing toward an adult audience through a personal narrative as a daughter and having the scientific context to understand the changes in her father’s brain in the book written by Cindy Weinstein and Bruce Miller, Finding the Right Words. Then, writing for a young audience of English- and Spanish-speaking children, and making the message accessible through a beloved animal’s point of view in the book written by Luis Martinez, Pipo, Don’t Forget Me. Both stories across the life course educate about dementia and advocate for empathy in the light of a debilitating disease. Their stories trace not just the challenges, but also the sparks of hope in the midst of dementia.ObjectivesWebinar participants will: Hear from authors in the neurosciences and the humanities who reach both adult and young audiences Understand their motivations to craft stories about the human experience and changes in the brainLearn how these stories amplify important messages of advocacy and awareness about neurologic health ModeratorsFionnuala Sweeney (Ireland), Journalist & Broadcaster -  Former Anchor/Correspondent with CNN International; Multimedia Editor, Atlantic Institute; Atlantic Fellow for Equity in Brain Health, Global Brain Health Institute (GBHI). Creator of podcast series, Dementia is Global.Oz Ismail, PhD, Director, Scientific Programs, Alzheimer's AssociationPanelistsBruce Miller, MD, Neurologist; Director, Memory and Aging Center, University of California San Francisco; Founding Director, Global Brain Health Institute; Co-Author, Finding the Right WordsCindy Weinstein, PhD, Professor of English, Caltech; Atlantic Fellow for Equity in Brain Health; Co-Author, Finding the Right WordsLuis Martinez, MD, Neurologist; Assistant Clinical Research Coordinator, Memory and Aging Center, University of California, San Francisco; Author, Pipo, Don’t Forget Me

“What is ME like?” submission – category “caregiver”

(This blog post is being written by Fern (they/them).)

I can’t survive without a caregiver.

I have Severe ME/CFS. I spend 98% of my time lying in bed or sitting with my feet up. When I get up, I can only do a little bit before I have to lie down again.

Going to the bathroom exhausts me.

I can’t survive without a caregiver, but I still am only depending on volunteers. I’ve been fighting for years now to get a caregiver paid by the government. I can see the end – I’m approved for 36 hours a week, and I know who I want to hire. But it’s been a long road.

Even though I obviously need a caregiver, the supports I’ve found are woefully insufficient. I have had to become a recruiter, on my own, for the caregiver agency that approved me for hours. I have had to advocate for myself and use my very limited energy to fight for help. I have had to watch my health decline as I went months and then years without adequate care.

I am both excited and nervous to receive proper care. One of the things I need help with is toileting. Because going to the bathroom exhausts me, I’m going to try out bedpans. Maybe that can help me avoid some PEM.

Another thing I need help with is bathing. I don’t know if I’ll be able to get through/tolerate a whole bath. Honestly, I’m just hoping I can get my hair washed at least once a week. My head has been so itchy for so long.

One thing I’m only excited for (not nervous) is food. Right now, I mostly only eat microwaveable things that a volunteer prepares for me on the days that they’re over. I’m excited to eat meals that are not microwaved! I’m excited to eat burritos, salmon, ravioli, and biscuits.

Another thing I’m only excited about is wheelchair walks. I get taken on walks occasionally now, but it would really help me to go on walks every day (excluding when I’m in PEM). I love being in nature. I love seeing the trees and breathing the fresh air. I love seeing squirrels darting around. I can occasionally go on a short walk with my rollator/rolling walker on my own, but I can go out much more consistently (and for longer) with help.

And finally, I’m excited to BRUSH MY TEETH. I can’t usually do this on my own. It takes a lot of energy to get to the sink AND then do brushing motions for the recommended time. (When I do manage to do it on my own, I manage about 20 seconds.) I need someone to bring the supplies to me, including a cup, then bring the supplies back and wash the cup out. I’m concerned about my teeth!

I hope I get a paid caregiver very soon.

#HFCCareCon2025 is this Friday, 12-3 pm PT; 3-6pm ET. It's going to be helpful, thoughtful, authentic, & even funny (at times). I am honored to be on the panel, "End of Life but not the End of Love." I am also so grateful to #LaurenMillerRogen and #SethRogen for sharing their story (watch their documentary about Lauren's mother, Adele, #TakingCare) & using their power to help #caregivers & to educate the public about the facts of #dementia. The event is free.

donatehfc.com/event/hfc-careco

www.donatehfc.comHFC CareCon 2025{{MetaTags.description}}

#HFCCareCon2025 is this Friday, 12-3 pm PT; 3-6pm ET. It's going to be helpful, thoughtful, authentic, & even funny (at times). I am honored to be on the panel, "End of Life but not the End of Love." I am also so grateful to #LaurenMillerRogen and #SethRogen for sharing their story (watch their documentary about Lauren's mother, Adele, #TakingCare) & using their power to help #caregivers & to educate the public about the facts of #dementia. The event is free.

donatehfc.com/event/hfc-careco

www.donatehfc.comHFC CareCon 2025{{MetaTags.description}}

#SethRogen and #LaurenMillerRogen have made a documentary about and in honor of Lauren's mother, who died of early-onset #Alzheimer's. There will be 2 screenings tomorrow, January 29. One at 2 pm and 5 pm. I will be at the first one sharing my thoughts about the film (which I haven't yet seen). If you are in the Redondo Beach area and can come to the Kensington senior community, please do. The work they have done for #caregivers through their foundation, #HFC (Hilarity for Charity) is essential.

#SethRogen and #LaurenMillerRogen have made a documentary about and in honor of Lauren's mother, who died of early-onset #Alzheimer's. There will be 2 screenings tomorrow, January 29. One at 2 pm and 5 pm. I will be at the first one sharing my thoughts about the film (which I haven't yet seen). If you are in the Redondo Beach area and can come to the Kensington senior community, please do. The work they have done for #caregivers through their foundation, #HFC (Hilarity for Charity) is essential.

Tip for #caregivers of ppl with #dementia -- reserve a tape or CD or playlist for quiet time, like naps and #bedtime. At first you can put it on when they are already sleepy, but eventually it becomes a cue that it's time to sleep.
I discovered this quite by accident, with a CD a friend sent (Jon Hassell, Fascinoma). The beginning is so calming. My mom has learned the tune. I just now put it on, 1am, she was not oriented to time, didn't know she was already at home in bed. @caregivers