Long Term Caregiver
@ultracaregiving.bsky.social
Running an ultramarathon of caregiving for too many years to count and the foreseeable future.
Pinned
#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
#Choir #StillMasking
Reposted by Long Term Caregiver
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
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
August 9, 2025 at 7:54 AM
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
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
Reposted by Long Term Caregiver
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!)
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!)
June 23, 2025 at 11:59 PM
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!)
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!)
Reposted by Long Term Caregiver
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/ 🌿
June 13, 2025 at 8:18 PM
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/ 🌿
Reposted by Long Term Caregiver
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 👇
Oonagh explores the importance of understanding rest, comparing her experiences as an athlete to those as a patient.
Link in next post 👇
June 10, 2025 at 9:08 AM
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 👇
Oonagh explores the importance of understanding rest, comparing her experiences as an athlete to those as a patient.
Link in next post 👇
Reposted by Long Term Caregiver
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:
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:
June 8, 2025 at 11:49 AM
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:
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:
Reposted by Long Term Caregiver
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
"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
June 5, 2025 at 1:20 PM
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
"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
Reposted by Long Term Caregiver
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 :)
May 30, 2025 at 3:52 PM
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 :)
Reposted by Long Term Caregiver
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/...
Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.
www.bmj.com
May 22, 2025 at 5:44 PM
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/...
Reposted by Long Term Caregiver
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!
May 16, 2025 at 1:27 AM
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!
Reposted by Long Term Caregiver
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/
May 15, 2025 at 8:34 AM
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/
Reposted by Long Term Caregiver
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
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
April 2, 2025 at 6:00 PM
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
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
Reposted by Long Term Caregiver
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
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
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.
www.npr.org
April 2, 2025 at 6:00 PM
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
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
Reposted by Long Term Caregiver
Le Musée de Vancouver prépare une exposition captivante visant à faire découvrir au public la réalité de la vie avec la covid longue.
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March 21, 2025 at 11:11 PM
Le Musée de Vancouver prépare une exposition captivante visant à faire découvrir au public la réalité de la vie avec la covid longue.
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Reposted by Long Term Caregiver
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.
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March 21, 2025 at 11:11 PM
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.
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Reposted by Long Term Caregiver
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....
#ClimateChange #ClimateImpacts
onlinelibrary.wiley.com/doi/full/10....
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...
onlinelibrary.wiley.com
March 20, 2025 at 6:06 PM
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....
#ClimateChange #ClimateImpacts
onlinelibrary.wiley.com/doi/full/10....
Reposted by Long Term Caregiver
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.
Please don't reply with suggestions.
March 17, 2025 at 3:00 AM
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.
Please don't reply with suggestions.
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.
March 1, 2025 at 7:31 PM
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.
Reposted by Long Term Caregiver
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.
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.
Media pieces that present "think yourself better" as revolutionary secret knowledge as if it is not both the first thing that everyone who gets Long Covid tries, and the first, middle and last thing that everyone who gets Long Covid is told
March 1, 2025 at 1:10 PM
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.
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.
Reposted by Long Term Caregiver
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
www.theglobeandmail.com/opinion/arti... via @theglobeandmail.com @cdncaregiving.bsky.social
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
www.theglobeandmail.com
February 18, 2025 at 1:29 PM
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
www.theglobeandmail.com/opinion/arti... via @theglobeandmail.com @cdncaregiving.bsky.social
Reposted by Long Term Caregiver
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
#QualitativeResearch
February 27, 2025 at 1:45 AM
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
#QualitativeResearch
Reposted by Long Term Caregiver
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...
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.
www.nbcnews.com
February 25, 2025 at 1:46 PM
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...
Reposted by Long Term Caregiver
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.
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.
January 31, 2025 at 1:43 AM
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.
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.