The latest care work stories
A simple loss
It doesn't rhyme with purpose But that's what it is Or inspiration But that, too You've lost it. In the middle of everything else, that one thing, that oasis of sanity and resolve and purpose and inspiration; where everything else in the world that makes no sense...
Someone to talk to
At The Caregiver Space we work really hard to support each other. We have our online support groups so you can connect with each other. But what about when you want to talk to someone now and no one's online? [Tweet "Need to talk NOW? Here's where to get support"]...
Poor sleep
Although sleep is a need, it is a negotiable one. Societies have historically varied in their practices, and minorities have got by on less than is needed, sometimes for a lengthy period. Everyone weighs sleep against other priorities. This plasticity is what gives...
When I Have Dementia
“I hope you’ll still laugh at my jokes when I have dementia,” I said to my husband Ryan on an evening walk not long after my thirty-fourth birthday. It was the first time I had tried out my new resolution to stop saying “if I get dementia” and to start referring to...
The philosophy of selfhood became real when my mother got dementia
At first, my mother, the poet Anne Atik, had seemed just ordinarily confused. Then, very gradually, the confusion took on a pathological aspect. She awoke in the middle of the night thinking it was morning. On what turned out to be her last Eurostar journey, she...
Still Life
The doctor told Ann that John had severely damaged his spinal cord and was paralyzed from his neck down. He was able to swivel his head from side to side, but because his circulatory system had been disrupted, causing his blood pressure to fluctuate wildly, he could...
Tethered to a ventilator for most of his life, how Ryan Lythall found his voice
His story? When Lythall was six-months-old, his mother, Irene, rushed him to CHEO where he had an emergency intubation that saved his life. He has rarely taken a breath without mechanical help since that day. He spent the next six years in CHEO’s intensive care unit,...
Working Women, Aging Parents: Some Advice For Caregiving Daughters
Millions of women in this country are caring for an aging parent or parents and for many, it’s not going so well. The career setbacks they may have experienced as a result of motherhood are compounded by the setbacks they are now experiencing as a result of...
In ‘Corsicana,’ Will Arbery Puts Art, Family and Down Syndrome Onstage
Arbery, who grew up in Dallas with seven sisters in a conservative Catholic milieu similar to that of “Heroes,” had always wanted to write a play about his relationship with Julia, who is two years older (as she likes to remind him). But he didn’t want to write, as he...
Top Articles & Resources
Become a paid family caregiver in Canada
Become a paid family caregiver in the US
Compassion fatigue
Anticipatory grief
Caring for an abusive parent
When you’re at a breaking point
Dating as a family caregiver
Dealing with anger
Finding someone to talk to
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Common terms for caregiving
The actions: caretaking, care work, assisting, ADL support, direct care, care management, care coordination, care navigation
The person providing support: carer, care partner, aide, personal care assistant, home health aide (HHA), care coordinator, care navigator, case manager, care custodian, foster parent, foster caregiver, guardian, one-to-one, homemaker, live-in, care manager, nurse aide, care planner, private duty nurse, nanny to a disabled child, elder nanny, care companion, special needs parent, disability mom, disability dad, domestic helper, domestic, housekeeper, mother’s helper, family caregiver, paid caregiver, designated caregiver, partner in care
The people providing support: care team, web of care, care web, concierge, care train
The person receiving support: care recipient, caree, loved one (LO), ill spouse (IS), ward, dependent, elder, homebound, patient, client
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The thing is, everyone is talking about caregiving. They just don’t use the term “caregiving.” They talk about cancer, dementia, MS, cerebral palsy, and the frailty that sometimes accompanies aging.
They talk about being overwhelmed, stressed out, burnt out, and pulled in a dozen directions at once.
Stereotypes around who provides care leaves young people, queer people, men and masculine people, polyamorous and non-traditional families, and many others feeling like they don’t count as caregivers and don’t qualify for support. People who provide care during flares or as respite, who help a primary caregiver, who coordinate care from a distance, who manage the paperwork without providing hands-on care, are often overlooked. Their stories get lost, especially since they rarely use the term “caregiver.”
There are so many different terms used to describe caregiving and caregiving is itself an umbrella term to describe many different things. Many people who provide care don’t identify what they do with a specific label, outside of their role as a partner, friend, or other relationship. All of this can make it difficult to know who counts as a “real” caregiver.
Outside of discussing support provided by one person to another, caregiving is a term used to refer to very different things by the cannabis industry, the fetish community, and property maintenance. In psychology, “caregiver” and “caretaker” are used to label different relationship dynamics.
All of this makes it incredibly difficult to find resources that are relevant to your situation and to connect with people who’ve experienced similar circumstances. That’s why this database exists.
We curate resources our community has found insightful, powerful, and helpful. These are categorized based on the situation they discuss, type of care provided, characteristics of author, and relationship between care provider and recipient. Stories are also tagged with terms, like the disease or condition, so you can easily locate articles that relate to your life.
If supporting someone else’s physical or mental health is a big part of your life,
we recognize you and we welcome you into our community.
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Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).
This isn't a roundup of articles; this is what's on her mind after deep discussions with a wide array of care workers, participating in communities of mutual aid, reactions to mainstream and academic publications, and personal reflections—from the profound to the profane.
We go way beyond tips and tricks. We're imagining a different world, based on what care workers are already living.
There are no grand solutions, but there are countless little ways to make our lives better.
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This is a space for everyone who provides care, no matter who you are or where you are in your caregiving journey
