Long Term Caregiver
@ultracaregiving.bsky.social
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Running an ultramarathon of caregiving for too many years to count and the foreseeable future.
pinned post!
#CovidConscious
folks, have you found in-person COVID conscious choirs? If you have started one, can you share a bit about what worked well?
#Choir
#StillMasking
11 months ago
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Long Term Caregiver
Al Haddrell
2 months ago
CO2 monitors have become popular tools people can use to estimate their indoor air quality. A new study was recently published that looks into how we can use them to optimise occupancy thresholds and identify problem locations. Actual practical science!!! A thread
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Long Term Caregiver
Robbie Schneider
4 months ago
Starting a 🧵 of things not to say to a family in crisis. Feel free to chime in: - All the rain is what makes the flowers bloom. - Say ( ) prayer. (Pick whatever combo.) - You're like Job. - You need an exorcism on your house. (Seriously!)
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Long Term Caregiver
Dr. Vivian Stamatopoulos
4 months ago
I spent the first 10+ years of my academic career studying young caregivers so I was more than happy to give expert commentary for this story.
www.cbc.ca/news/health/...
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They're too young to drive or vote — but they're caring for their ailing loved ones | CBC News
Findings from a recent case study suggest that as family doctors treat a growing aging population, they will also need to start providing support for the young people who are increasingly sharing the ...
https://www.cbc.ca/news/health/young-caregivers-1.7563734
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Long Term Caregiver
Dr. Heather Hinam 🍁 🇨🇦
4 months ago
Everything is a lot these days and I know I’m very lucky to live in a place in a situation that is relatively calm right now. So how about you come kayak along Lake Winnipeg with me? Hopefully it brings a little peace to your day. 1/ 🌿
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Long Term Caregiver
ThereForME
4 months ago
Today’s
#ThereForME
blog is from our very own
@oonaghcousins.bsky.social
! Oonagh explores the importance of understanding rest, comparing her experiences as an athlete to those as a patient. Link in next post 👇
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Long Term Caregiver
Mary Fernando M.D. 🇨🇦
4 months ago
Better late than never. We’ve asked why we are still doing routine measles immunizations when we’re in an outbreak. Now, the guidance appears to have changed (though the date thing is confusing) 2nd doses for those who have only had one measles vaccine. Routine: Outbreak:
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Long Term Caregiver
Jeff Gilchrist
4 months ago
School Indoor Air Quality Basics. "Easy-to-understand resources are designed for school staff and decision-makers without a technical background, helping them make informed choices about indoor air quality." Direct link to fact sheets (
www.ashrae.org/file%20libra...
).
#school
#iaq
#airquality
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Long Term Caregiver
Dr. Heather Hinam 🍁 🇨🇦
4 months ago
I'm 5'1" on a good day so getting my kayak on the roof of my car by myself can be a challenge. My friend lent me this roller that suctions to your window and it helps so much. That combined a with a folding stool that I keep in my car, and I'm good to go all by my short self :)
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Long Term Caregiver
Patient-Led Research Collaborative
5 months ago
Grateful to
@putrinolab.bsky.social
and the clinicians, researchers, & PLRC members who authored this response piece in the BMJ yesterday. There are countless biological findings in severe ME, and people with severe ME need to be treated with effective therapies!
#pwME
www.bmj.com/content/389/...
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Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.
https://www.bmj.com/content/389/bmj.r977/rr-16
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Long Term Caregiver
Josephine Robertson
5 months ago
Hey fellow therapist & MH peeps. Anyone have a curriculum for a caregiver (esp stroke caregiver) support group they'd be willing to share with a student (me)? I'm putting together a support group for stroke caregivers specifically and while I have ideas I'd love advice from others!
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Long Term Caregiver
Boo-trino Lab
5 months ago
by the patient community. For the longest time, patients have told us that CBT and GET cause harm. We finally have hard physiologic data to support this and yet idealogues are allowed to freely publish OPINION about
#MECFS
and other energy-limiting diseases in @bmj_latest. To 4/
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Long Term Caregiver
Denise Brown
6 months ago
Help and support automatically should be there for us, side by side with support for our carees. We also need to define caregiving as an emotional experience rather than one about tasks and chores. It's how we feel that takes a toll. /4
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Long Term Caregiver
Denise Brown
6 months ago
A few thoughts on this beautifully-written piece by
@mcgowankat.bsky.social
We deserve help during difficult times. Receiving help and support shouldn't depend on what we call ourselves.
www.npr.org/2025/04/01/n...
/1
#caregiving
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Caregiving can test you, body and soul. It can also unlock a new sense of self
Helping a sick family member over months or years can be an enormous strain. It can also disrupt your identity. Psychologists say embracing this change can open up new ways for caregivers to cope.
https://www.npr.org/2025/04/01/nx-s1-5336314/caregiver-caregiving-identity-family-support-burnout
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Long Term Caregiver
Canadian Covid Society
7 months ago
Le Musée de Vancouver prépare une exposition captivante visant à faire découvrir au public la réalité de la vie avec la covid longue. 1/3
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Long Term Caregiver
Canadian Covid Society
7 months ago
The Museum of Vancouver is planning an intriguing exhibition to show people what it’s like to live with long Covid. Longhaulers from across Canada are invited to share up to six pictures and captions, showing people what it’s like to live a day in your life. 1/2
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Long Term Caregiver
Jennifer Baumbusch
7 months ago
NEW PUB (open access): Weathering the Storm: Climate-Related Weather Event Experiences of Families of Children With Medical Complexity
#ClimateChange
#ClimateImpacts
onlinelibrary.wiley.com/doi/full/10....
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Weathering the Storm: Climate‐Related Weather Event Experiences of Families of Children With Medical Complexity
Background Climate change is increasingly an urgent concern because of the catastrophic and irreversible impacts on the planet and society as a whole. In recent years, there have also been more freq...
https://onlinelibrary.wiley.com/doi/full/10.1111/cch.70068
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Long Term Caregiver
Jennifer Baumbusch
7 months ago
The other day my husband got the "you should really go on vacation" line from our GP. This is one of the worst things you can say to a caregiver. This is not support. This is just making a person feel worse about a situation over which they have little control. Please don't reply with suggestions.
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My robot vacuum isn’t perfect, but it saves me an hour or two a week. It’s one of the few ways I’ve “found” more time. If you’re supporting a friend who is
#Caregiving
, this could be a useful gift, especially if you’re not in the same location and want to help.
7 months ago
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Long Term Caregiver
Kate Violette
7 months ago
And people with ME/CFS, and people with Lyme, and and... If "think yourself better" worked for *any* biological illness, we'd know about it and would all be taking advantage of it. Try telling someone with MS or cancer to "think themselves better" and notice how ridiculous you sound.
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Long Term Caregiver
André Picard @picardonhealth
8 months ago
Canada needs a plan to help struggling caregivers. Without this army of helping hands, the country’s health and welfare systems would be collapsing even faster, by
@picardonhealth.bsky.social
www.theglobeandmail.com/opinion/arti...
via
@theglobeandmail.com
@cdncaregiving.bsky.social
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Opinion: Canada needs a plan to help struggling caregivers
Without our army of silent, unpaid helpers, our health and social welfare systems would be collapsing even faster
https://www.theglobeandmail.com/opinion/article-canada-needs-a-plan-to-help-struggling-caregivers/
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Long Term Caregiver
Jennifer Baumbusch
7 months ago
I had someone decline to participate in a qualitative study using interviews because they don't want their recorded voice to be stolen by AI. Anyone else experience this? It's a first for me.
#QualitativeResearch
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Long Term Caregiver
Centre for Global Social Policy
8 months ago
Experts say people with disabilities are often left behind during evacuation and recovery efforts, and that as climate change amplifies the frequency and scale of natural disasters, the discrepancies are becoming more serious.
#CareAndClimate
#CareEconomies
www.nbcnews.com/data-graphic...
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Disability amid disaster: People with disabilities are disproportionately impacted by natural disasters
After disasters, people with disabilities are more likely to be displaced, more likely to never return home and more likely to receive scam offers, Census Bureau data shows.
https://www.nbcnews.com/data-graphics/people-disabilities-are-disproportionately-impacted-natural-disasters-rcna192577
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Long Term Caregiver
Charlie Park
8 months ago
A reminder that it's ok for Support Workers to: 1) Work remotely/offsite. 2) Go out alone on errands. 3) Work alone while we work, rest, play or go out. 4) Work with us only when needed. Not all disabled adults need supervision, training or companionship. Social stimulation can be counter-helpful.
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Long Term Caregiver
Al Haddrell
8 months ago
This is neat! My video on how to use a CO2 monitor to measure ventilation has been reviewed by a YouTube channel dedicated to home performance. It's really good, and they bring up a few points I missed. Check it out:
www.youtube.com/watch?v=Uzce...
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DIY Test for Home Ventilation: Simple CO2 Tracking Process by Al Haddrell
YouTube video by Home Performance
https://www.youtube.com/watch?v=UzceNnNqqPo&t=1s&ab_channel=HomePerformance
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Long Term Caregiver
Care, Tech, and Tips Podcast
8 months ago
Assistive Access is a game changer for loved ones who need a more simple, more accessible version of Iphone with guardrails that give YOU a little more peace of mind.
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Long Term Caregiver
Kelly
8 months ago
RFK Jr seems intent on erasing chronic illness with “wellness activities”… Remember that healthy living can’t make you bulletproof & the wellness movement is often toxic & dangerous Before I became disabled I was big into holistic health. The community turned on me the moment I didn’t “heal myself”
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Long Term Caregiver
Katy B
8 months ago
#ValentinesDay
can feel like one of the toughest days for
#pwME
#ME
takes a huge toll of the lives of those who are close to us, some relationships don't survive this, for many other
#pwME
there's no possibility of a relationship Sending love to all your courageous hearts💖
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Long Term Caregiver
WHO
8 months ago
Dr Menattallah Elserafy is known for her research on using yeast to study DNA damage-related diseases. She advises women to dream big, emphasizing that their unique qualities can make them leaders in scientific research. 🔬
#WomenInScience
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Long Term Caregiver
WHO
8 months ago
It is International Day of Women and Girls in Science. Gagandeep Kang’s research on enteric infections has contributed to the rotavirus vaccine rollout in
#India
, protecting millions of children and shaping a healthier future. for all. 🔬
#WomenInScience
#WomenInSTEM
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Long Term Caregiver
WHO
8 months ago
"I have a message for the next generation. They have to do something that they enjoy. If they like to solve puzzles, science is for them." Katalin Karikó’s journey in
#mRNA
research shows that persistence and belief in one’s work can change the world. 🔬
#WomenInScience
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“Many were frustrated and stressed from having to constantly accommodate the system and its requirements.” This quote from the paper feels familiar. Other
#caregivers
may also appreciate feeling seen by reading the (pseudonymous) stories of navigating home care supports.
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8 months ago
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Long Term Caregiver
Ryan Tennant
8 months ago
Please share this post with undergraduate university students in Canada 🍁 Study Title: Student Perspectives on Health-Inclusive Learning in Response to Infectious Disease Transmission and Additional Health-Related Challenges Please see the poster and link for more details. 🔗:
bit.ly/edu-ca-survey
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Long Term Caregiver
The Canadian Anti-Stalking Association (CASA)
8 months ago
Language matters! The way people throw around the word "stalking" makes it difficult for survivors to be believed because "Hey, haven't we all done a little light stalking in our day?!" + your ex is allowed to move on! They, and their future partners, don't deserve harassment as a result.
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Handled stressful matters for my loved one today. Instead of running back, I was reminded to build an hour of time into my leave request for my own self care. It meant I wasn’t completely burnt out when it came to the end of the day. Supporting
#caregivers
in the workplace makes such a difference!
8 months ago
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Long Term Caregiver
Centre for Global Social Policy
8 months ago
Great new
#TimeUse
#DataVisualization
tool from Statistics Canada, which includes "unpaid
#Care
" as an activity group.
www150.statcan.gc.ca/n1/pub/71-60...
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Long Term Caregiver
Centre for Global Social Policy
8 months ago
Great piece about policy and advocacy efforts to demand a National
#Caregiving
Strategy, featuring insights from CGSP director Ito Peng and
#CareEconomies
in Context project partner CCCE.
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Long Term Caregiver
Timothy McBride
8 months ago
NIH must address the twin crises of long Covid and ME/CFS — together
www.statnews.com/2025/02/04/r...
via
@statnews.com
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NIH must address the twin crises of long Covid and ME/CFS — together
NIH has an historic opportunity to transform post-viral illness research by bringing ME/CFS into its long Covid RECOVER Initiative.
https://www.statnews.com/2025/02/04/recover-initiative-nih-long-covid-me-cfs-post-viral-illness/
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Long Term Caregiver
Still COVIDing Canada
8 months ago
Would you like to avoid buying respirators made in the United States? We have options. Check out the
StillCOVIDing.ca
site for lists of respirators made in 🍁 Canada and the 🇪🇺 European Union.
stillcoviding.ca/en/resources...
#CovidIsntOver
#LaPandemieNEstPasFinie
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Masks / respirators
https://stillcoviding.ca/en/resources/masks-respirators/
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Long Term Caregiver
Still COVIDing Canada
8 months ago
Vous voulez éviter d’acheter des respirateurs fabriqués aux États-Unis ? Nous avons des options. Consultez le site
StillCOVIDing.ca
pour obtenir des listes de respirateurs fabriqués au 🍁 Canada et dans 🇪🇺 l’Union européenne.
stillcoviding.ca/fr/ressource...
#CovidIsntOver
#LaPandemieNEstPasFinie
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Masques / respirateurs
https://stillcoviding.ca/fr/ressources/masques-respirateurs/
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Long Term Caregiver
Tara Moriarty
8 months ago
Prévisions de COVID pour le Canada : FÉV 1-14, 2025 GRAVE : ON TRÈS ÉLEVÉ : CAN, AB, MB, Nord, QC ÉLEVÉ : CB, NB, TNL, NÉ, ÎPÉ, SK MODÉRÉ : aucun Environ 1 personne sur 42 est actuellement infectée au Canada.
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Long Term Caregiver
Tara Moriarty
8 months ago
Canadian COVID Forecast: Feb 1-14, 2025 SEVERE: ON VERY HIGH: CAN, AB, MB, North, QC HIGH: BC, NB, NL, NS, PEI, SK MODERATE: none About 1 in 42 people in Canada are CURRENTLY infected.
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Long Term Caregiver
Al Haddrell
8 months ago
This study made some waves on social media yesterday. It purports to show that CO2 concentration doesn’t correlate with covid transmission. Let’s talk about this, I have some thoughts.
www.sciencedirect.com/science/arti...
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CO2 levels and SARS-CoV-2 transmission in public schools: A retrospective cohort study in Montreal (Canada)
Scientific evidence suggests that SARS-CoV-2 is transmitted primarily through close contact with susceptible individuals and that the risk of transmis…
https://www.sciencedirect.com/science/article/pii/S2950362025000062#sec0095
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Long Term Caregiver
Tara Moriarty
8 months ago
DYK? Since July 2022, the lag between COVID-19 symptom onset and a positive PCR test is 4.5-6.5 days. You might test positive earlier than 5 days after symptom onset, but it can be up to one week. That's PCR--with RATs you're even less likely to test positive within the first 5 days of symptoms.
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Long Term Caregiver
#IndoorAirQuality
and
#CovidConscious
teams … what do I need to consider before moving a loved one into a multi-unit residence with an HVAC system that has an energy recovery unit with a MERV 15 filter for each unit? (I think it might draw from a shared supply of heated/cooled air.)
8 months ago
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Long Term Caregiver
Julie S. Lalonde
8 months ago
American influences in Canada abound but the "You must register to vote!" one isn't talked about enough and the misinformation is a problem. I've voted in every election since I was 18 & never been on the registry because of my stalker. It's FINE. It still takes me less than 5 mins to vote!
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#IndoorAirQuality
and
#CovidConscious
teams … what do I need to consider before moving a loved one into a multi-unit residence with an HVAC system that has an energy recovery unit with a MERV 15 filter for each unit? (I think it might draw from a shared supply of heated/cooled air.)
8 months ago
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Long Term Caregiver
Mary Fernando M.D. 🇨🇦
8 months ago
3/ If you only received one vaccine (everyone prior to 1970 did) you can take this article and, regardless of your titres, ask for a measles booster. I did. Also, many thanks to
@deonandan.bsky.social
and
@kidsdoc1.bsky.social
for your excellent and timely info on measles.
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Long Term Caregiver
Shematologist, MD
8 months ago
Just your regular reminder that iron deficiency is super common especially in those who menstruate and it matters even if you aren’t anemic.
jamanetwork.com/journals/jam...
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Prevalence of Iron Deficiency and Iron-Deficiency Anemia in US Females Aged 12-21 Years, 2003-2020
This study examines prevalence of iron deficiency among females aged 12 to 21 years to inform future screening strategies for iron deficiency and iron-deficiency anemia.
https://jamanetwork.com/journals/jama/fullarticle/2806540
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