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

If you’re interested in a more breathable and comfortable respirator, consider the sampler packs from @donatemask.bsky.social and @canadastrong.bsky.social. There are lots of options available. Many #CovidConscious people have noted the VFlex as a budget-friendly choice for exercise.

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!)

“I could never deal with what you’re going through.” (Perhaps it’s meant well, but my experience is that no one really knows what/how they will manage through a crisis until it occurs. So hearing this can feel lonely/othering.)

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/ 🌿

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 👇

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:

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

Close-up of a suction-cup roller bar attached to the back window of a blue Toyota Matrix. A blue Dagger kayak sits on top.

A blue Dagger kayak sits on a roller bar suctioned to the back window of a dirty blue Toyota Matrix. They sit in the front yard of a green cottage in the woods.

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 :)

Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.

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/...

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!

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/

Nifty! I’ve been able to get away with a fairly mid-range robot vacuum. I tidy before running it, but it still saves me time. In How to Keep House While Drowning, KC Davis talks about everyone deserving a space that works for them. For me, that includes a reasonably crumb-free floor.

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

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.

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

Image contenant les détails d’un appel de propositions pour un projet de sensibilisation à la covid longue. L’image comprend des exemples de photos tels que des médicaments et des suppléments, une alerte de fréquence cardiaque sur une montre intelligente, un rendez-vous médical et des fleurs sous un rayon de soleil. Au bas de l’image figurent les logos des organismes organisateurs : l'Université Simon-Fraser, le OH-HI Science CoLab, le Musée de Vancouver, le réseau interdisciplinaire de soins cliniques post-COVID-19 de la Provincial Health Services Authority et l'agence de recherche Michael Smith Health Research BC. Le texte sur l'image se lit comme suit : Votre vie, vos photos, votre histoire Une journée dans la vie d’une personne atteinte de la covid longue Partagez votre expérience de personne vivant avec la covid longue dans le cadre d'une exposition au Musée de Vancouver! « Une journée dans la vie d’une personne atteinte de la covid longue » est un projet photographique qui met en lumière le quotidien des personnes touchées afin de donner une visibilité accrue à cette réalité, de réduire la stigmatisation et de plaider pour un meilleur soutien. Que vous ayez reçu un diagnostic de covid longue ou que vous viviez avec des symptômes persistants après une infection à la covid-19, nous vous invitons à partager jusqu'à six photos de votre quotidien. Elles seront exposées au Musée de Vancouver à l’automne 2025. Vous pouvez soumettre vos photos jusqu’au 30 avril 2025.

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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Graphic with details of a call for submissions for a long Covid awareness project. The graphic includes examples of photos: medications and supplements; heart rate alert on a smartwatch; health care appointment; and flowers in a ray of sunshine. At the bottom of the image are logos of organizers: Simon Fraser University, OH-HI Science CoLab, Museum of Vancouver, PHSA’s Post-COVID-19 Interdisciplinary Clinical Care Network, and Michael Smith Health Research BC. 

Text on the graphic reads as follows: Your Life, Your Photos, Your Story A Day in the Life of a Longhauler Share your Long Covid Story at the Museum of Vancouver! "A Day in the Life of a Longhauler" is a photography project that captures the daily life of individuals living with Long COVID to enhance visibility, reduce stigma & advocate for improved support. Whether you have a Long COVID diagnosis or are dealing with long-term symptoms following a COVID-19 infection, we invite you to share up to six photos from your everyday life which will be showcased at the Museum of Vancouver In the Fall of 2025. Photo Submissions will remain open until April 30, 2025.

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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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...

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....

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.

@caretechandtips.bsky.social Selecting the best robot vacuum might be an interesting podcast topic!

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.

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.

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

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

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

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.

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...

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.

Sign languages – Learning - Collection of Canadian language resources - Resources of the Language Portal of Canada - Languages - Canadian identity and society - Culture, history and sport - Canada.ca Directory of hyperlinks to training and resources on how to learn various Canadian sign languages.

Some Canadian resources (many virtual) for learning ASL, including courses that are less than $900: www.noslangues-ourlanguages.gc.ca/en/ressource...