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#caregivers
#Cortez-Masto asked #CoryBooker re: these HHS cuts. Acc. to the #Alzheimer's Association, "Bipartisan Alzheimer’s programs like the Building Our Largest Dementia (BOLD) Infrastructure are now at risk due to a reduction in staff & resources. BOLD strengthens Alzheimer’s public health efforts, such as increasing early detection & diagnosis, reducing risk & supporting #caregivers. Congress reauthorized BOLD last year w/unanimous support."
Defend BOLD here.
#Cortez-Masto asked #CoryBooker re: these HHS cuts. Acc. to the #Alzheimer's Association, "Bipartisan Alzheimer’s programs like the Building Our Largest Dementia (BOLD) Infrastructure are now at risk due to a reduction in staff & resources. BOLD strengthens Alzheimer’s public health efforts, such as increasing early detection & diagnosis, reducing risk & supporting #caregivers. Congress reauthorized BOLD last year w/unanimous support."
Defend BOLD here.
#Harris had a plan for #caregivers: "The intensity of caregiving would require her to stop work as a teacher, but if she stopped that paid work, she’d be unable to buy food & pay for housing. W/o a job, she could receive Medicaid, but @ 48 & willing & able to work, she’d be among those called out as not fit for Medicaid. Currently, she receives health insurance through the expansion of #Medicaid via the #ACA — which some propose cutting."
Harris had a plan for #caregivers: "The intensity of caregiving would require her to stop work as a teacher, but if she stopped that paid work, she’d be unable to buy food & pay for housing. W/o a job, she could receive Medicaid, but @ 48 & willing & able to work, she’d be among those called out as not fit for Medicaid. Currently, she receives health insurance through the expansion of #Medicaid via the #ACA — which some propose cutting."
Earth Angels & Red Cross Miracles: My Grandma's Story
When life throws unexpected challenges, it's the kindness of others that truly shines. 
My family and I overflow with gratitude for the Canadian Red Cross as they swiftly delivered a vital hospital bed to our home, making my 94-year-old grandma's convalescence so much more comfortable!
As one of her caregivers, and knowing she is non-verbal, this brought such a huge relief.
"These [Alzheimer's Disease Research] Centers also train the next generation of researchers to treat patients with #Alzheimer’s disease and help families manage symptoms and cope."
I've spoken at many #ADRCs & am devastated that 14 will run out of funding at the end of April. 47 & his henchmen should look in the mirror & study their face. They may not remember it at some point & their sadism will ensure that there will be no hope for them, loved ones, & #caregivers.
"These [Alzheimer's Disease Research] Centers also train the next generation of researchers to treat patients with #Alzheimer’s disease and help families manage symptoms and cope."
I've spoken at many #ADRCs & am devastated that 14 will run out of funding at the end of April. 47 & his henchmen should look in the mirror & study their face. They may not remember it at some point & their sadism will ensure that there will be no hope for them, loved ones, & #caregivers.
Here is an announcement about the new grief support group I'll be leading for #HFC. The 1st meeting is on 3.19 at 2 pm ET, 11 am PT. Click enroll & sign up if you want to talk about your grief or listen to others share theirs. My experience comes from my father's early-onset #Alzheimer's. He was diagnosed in his mid 50s & died 15 years later. Looking back, he was sick well before then (the #prodromal phase). How I wish I knew then what I know now. I'll share this & more.
Here is an announcement about the new grief support group I'll be leading for #HFC. The 1st meeting is on 3.19 at 2 pm ET, 11 am PT. Click enroll & sign up if you want to talk about your grief or listen to others share theirs. My experience comes from my father's early-onset #Alzheimer's. He was diagnosed in his mid 50s & died 15 years later. Looking back, he was sick well before then (the #prodromal phase). How I wish I knew then what I know now. I'll share this & more.
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.
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.
"[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.
#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.
#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.
#EndAlz
#Alzheimer'sAssociation
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.
#EndAlz
#Alzheimer'sAssociation
“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.
#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.