@thecaregiverspace.bsky.social

94 Followers 183 Following 78 Posts Joined Jan 2025
22 hours ago
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The 3 AM Lifeline: Navigating Crisis Calls, Time Zones, and Cross-Border Care There is a specific kind of heart-stop that only happens when your phone vibrates on the nightstand at 3:00 AM. When you live abroad—whether as an expat, an immigrant, or a student—a ringing phone in the middle of the night isn't just a nuisance; it’s a potential crisis from back home. For those supporting a loved one through a critical illness or accident recovery from thousands of miles away, life becomes a blur of dual realities.

The 3 AM Lifeline: Navigating Crisis Calls, Time Zones, and Cross-Border Care

There is a specific kind of heart-stop that only happens when your phone vibrates on the nightstand at 3:00 AM. When you live abroad—whether as an expat, an immigrant, or a student—a ringing phone in the middle of the…

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3 days ago
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How to get an ID if you can’t go to the DMV If you’re a supporting someone with major mobility issues in the United States, you’ve probably run into this roadblock at least once: You need to provide a valid state-issued ID for the person you support — to access services, benefits, medical care, Social Security, benefits programs, housing, etc. But that person cannot visit the DMV. Maybe they’re in a hospital bed, a long-term care facility, an ICU, or simply too frail or disabled to be transported.

How to get an ID if you can’t go to the DMV

If you’re a supporting someone with major mobility issues in the United States, you’ve probably run into this roadblock at least once: You need to provide a valid state-issued ID for the person you support — to access services, benefits, medical care,…

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5 days ago
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When your spouse is falling for a scam If your spouse is squandering joint savings on scams, your future is at risk. Discover the legal tools to minimize the damage, protect your credit, and secure your home.

When your spouse is falling for a scam

If your spouse is squandering joint savings on scams, your future is at risk. Discover the legal tools to minimize the damage, protect your credit, and secure your home.

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1 week ago
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Home Care Nursing: What I Wish I’d Known Before Welcoming Nurses into My House Transitioning from hospital to home care can be a shock for families of medically complex children. Learn the hard truths about home nursing—from verifying competence to maintaining professional boundaries—and why you must advocate as the person in charge. When Declan was in the NICU, the nurses felt like my therapists and friends. They advised me, coached me, and cheered for us as we stumbled through those early days.

Home Care Nursing: What I Wish I’d Known Before Welcoming Nurses into My House

Transitioning from hospital to home care can be a shock for families of medically complex children. Learn the hard truths about home nursing—from verifying competence to maintaining professional boundaries—and why you…

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1 week ago
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Letting Go of Someone Else’s Treasures: The Quiet Grief of Objects One of the topics that comes up again and again in caregiving spaces—often whispered, sometimes confessed with guilt—is this: "What do we do with the things they loved?" Not the heirlooms everyone wants. Not the jewelry or the antiques. But the small, worn, deeply personal objects that mattered enormously to them… and honestly, to no one else. A cracked figurine.

Letting Go of Someone Else’s Treasures: The Quiet Grief of Objects

One of the topics that comes up again and again in caregiving spaces—often whispered, sometimes confessed with guilt—is this: "What do we do with the things they loved?" Not the heirlooms everyone wants. Not the jewelry or the…

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1 week ago
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Book Review: Happy-Go-Lucky There are a lot of books about caregiving out there—how-to-guides for every diagnosis and countless memoirs. Some of the most intriguing books about care work aren't officially about caregiving at all. In the case of David Sedaris, his most recent memoir has him as, well, hardly caregiving at all. It's very much a book about care work, complicated relationships, aging, and dying.

Book Review: Happy-Go-Lucky

There are a lot of books about caregiving out there—how-to-guides for every diagnosis and countless memoirs. Some of the most intriguing books about care work aren't officially about caregiving at all. In the case of David Sedaris, his most recent memoir has him as,…

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1 week ago
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When They Won’t Believe It’s a Scam: A guide for the powerless caregiver What do you do when a parent refuses to believe they’re being scammed? Learn how to implement "soft guardrails," involve authorities, and protect your own finances.

When They Won’t Believe It’s a Scam: A guide for the powerless caregiver

What do you do when a parent refuses to believe they’re being scammed? Learn how to implement "soft guardrails," involve authorities, and protect your own finances.

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2 weeks ago
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When Illness Changes the Shape of the “We”: Navigating Support in Poly Dynamics When someone you love becomes chronically ill or disabled, the map of your relationship changes. But when that relationship involves a network of partners, the shift doesn't just affect two people—it creates a ripple effect across the entire web of intimacy. In polyamorous and non-monogamous dynamics, the experience of taking care of a partner isn't a solo mission. It is a recalibration of time, energy, and emotional labor that often goes unacknowledged by a world that only understands "husband and wife."

When Illness Changes the Shape of the “We”: Navigating Support in Poly Dynamics

When someone you love becomes chronically ill or disabled, the map of your relationship changes. But when that relationship involves a network of partners, the shift doesn't just affect two people—it creates a ripple…

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2 weeks ago
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Dating as a widow: the second round dilemma We don't talk about this much in the groups, but it comes up eventually. You lose a spouse. You spend years in the trenches—meds, appointments, the slow fade of the person you love. Then, after the dust settles, you finally start to find yourself again. Maybe you even think about dating. Then you meet someone. They’re great. You share flirty texts.

Dating as a widow: the second round dilemma

We don't talk about this much in the groups, but it comes up eventually. You lose a spouse. You spend years in the trenches—meds, appointments, the slow fade of the person you love. Then, after the dust settles, you finally start to find yourself again.…

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3 weeks ago
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Two Hours Away Might as Well Be Another Country: Supporting Loved Ones When You’re “Close but Not Quite” We often hear about "long-distance caregiving" involving plane tickets and time zones. But there is a specific, quiet kind of stress that comes when you live only 30, 60, or 90 miles away. On a map, you’re "nearby." In reality, those two hours are an insurmountable wall. Whether you are blocked by a lack of a car, a grueling transit schedule, the high cost of gas and tolls, your own disability, or a job that doesn't offer "grace periods," the result is the same: You feel guilty because you aren't there, and you feel exhausted because you’re trying to be.

Two Hours Away Might as Well Be Another Country: Supporting Loved Ones When You’re “Close but Not Quite”

We often hear about "long-distance caregiving" involving plane tickets and time zones. But there is a specific, quiet kind of stress that comes when you live only 30, 60, or 90 miles away. On a…

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3 weeks ago
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What hospice is, and isn’t When I was an activity coordinator in a nursing home, I used to see a specific look on people's faces the moment the word "hospice" was mentioned. It was a mix of terror, finality, and a sense of giving up. I saw it again when my grandmother’s dementia reached its final chapters, and I’m seeing it now in our community. But here’s the thing: after decades in this world, I’ve realized that hospice isn't about giving up on life.

What hospice is, and isn’t

When I was an activity coordinator in a nursing home, I used to see a specific look on people's faces the moment the word "hospice" was mentioned. It was a mix of terror, finality, and a sense of giving up. I saw it again when my grandmother’s dementia reached its final…

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1 month ago
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Walking the Razor’s Edge: When an Abuser Needs a Caregiver It’s been said that the hardest battles aren't fought on a field with a clear enemy, but in the quiet of our own hearts. For many in our community, there’s a "stranger in the dark" that didn't come from a diagnosis, but from the very people who were supposed to be their first line of defense. When a parent who caused deep, lasting harm suddenly needs the support of a caregiver, it can feel like you’re being asked to walk back into a war zone without any armor.

Walking the Razor’s Edge: When an Abuser Needs a Caregiver

It’s been said that the hardest battles aren't fought on a field with a clear enemy, but in the quiet of our own hearts. For many in our community, there’s a "stranger in the dark" that didn't come from a diagnosis, but from the very…

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1 month ago
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The Care Gap: How Shifts in Immigration Impact the Healthcare Workforce A quiet crisis is unfolding at the intersection of immigration policy and the American healthcare system. In states like Florida, the recent headlines regarding the potential loss of legal status for Haitian nationals and other groups have sent ripples through the nursing home and home health industries. For the millions of Americans who rely on professional support to age in place or manage disabilities, these changes in work authorization aren't just political—they are deeply practical.

The Care Gap: How Shifts in Immigration Impact the Healthcare Workforce

A quiet crisis is unfolding at the intersection of immigration policy and the American healthcare system. In states like Florida, the recent headlines regarding the potential loss of legal status for Haitian nationals and…

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1 month ago
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How to find local grants and emergency assistance programs for family caregivers in Canada Because most grants and emergency assistance programs are local, time-limited, and poorly advertised, caregivers usually need to look beyond provincial and federal benefit lists. Here's how to actually locate local benefits in Canada.

How to find local grants and emergency assistance programs for family caregivers in Canada

Because most grants and emergency assistance programs are local, time-limited, and poorly advertised, caregivers usually need to look beyond provincial and federal benefit lists. Here's how to actually…

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1 month ago
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Navigating Chronic Illness and Relationship Shifts with Wisdom from Polyamory When your partner is struggling with undiagnosed health issues—exhaustion that won't lift, chronic pain with no name, or extreme mobility limitations—your relationship enters a "gray zone." You aren't just a partner anymore, but you don't quite feel like a "caregiver" either; you are simply trying to keep the lights on while the person you love feels further away than ever.

Navigating Chronic Illness and Relationship Shifts with Wisdom from Polyamory

When your partner is struggling with undiagnosed health issues—exhaustion that won't lift, chronic pain with no name, or extreme mobility limitations—your relationship enters a "gray zone." You aren't just a partner…

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1 month ago
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Finding the Music in Caregiving When I come home from college, I help take care of my grandparents. I always look forward to seeing them, in my mind they’re still the goofballs from every childhood memory. I can still picture their old house, the one beautifully stuck in the 1970s with yellowing wallpaper patterned with pears and apples. It was there that my grandparents lovingly gave me the nickname “Larry,” a name they decided suited a waiter.

Finding the Music in Caregiving

When I come home from college, I help take care of my grandparents. I always look forward to seeing them, in my mind they’re still the goofballs from every childhood memory. I can still picture their old house, the one beautifully stuck in the 1970s with yellowing…

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1 month ago
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When compassion runs dry If you are caring for someone with a serious, life-altering illness—especially one with no clear road back—you begin to live in a different world than most people. It’s hard to explain to someone outside of it. Your days are shaped by real stakes. Real loss. Real decisions that can’t be undone. You become familiar with words you never wanted to learn: progression, decline, complication.

When compassion runs dry

If you are caring for someone with a serious, life-altering illness—especially one with no clear road back—you begin to live in a different world than most people. It’s hard to explain to someone outside of it. Your days are shaped by real stakes. Real loss. Real decisions…

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2 months ago
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How to help a friend through grief Nearly two years ago, my best friend Margie lost her sister-in-law — an exceedingly special person in many of our lives — to glioblastoma. I’m proud of some of the ways I showed up during that time (flying home for Tallu’s funeral, calling regularly and organizing friends to check in) — yet there are other moments and conversations where I fell short — and when I remember them now, leave me sad or embarrassed.

How to help a friend through grief

Nearly two years ago, my best friend Margie lost her sister-in-law — an exceedingly special person in many of our lives — to glioblastoma. I’m proud of some of the ways I showed up during that time (flying home for Tallu’s funeral, calling regularly and…

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2 months ago
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My Mom—and the Case for Assisted Death "But not even the world’s healthiest lifestyle could protect against a disease that strikes 1 in 8 women, sometimes as a result of genetic predisposition. Whatever the underlying cause of its onset, her tumor was swiftly extinguished through the miracles of modern medicine, which have cut the breast cancer mortality rate by 58 percent from 1975 to 2019. By the time I entered high school, she seemed healthy again—back to daily vegetable juice, yoga, and working on her PhD dissertation.

My Mom—and the Case for Assisted Death

"But not even the world’s healthiest lifestyle could protect against a disease that strikes 1 in 8 women, sometimes as a result of genetic predisposition. Whatever the underlying cause of its onset, her tumor was swiftly extinguished through the miracles of…

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3 months ago
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I really wanted my grandmother to die Looking back now, the sheer mental exhaustion of trying to care for someone with Alzheimer’s seems like some sort of chaotic-good fever dream. But at the time, it was unbearably difficult to live through, and anyone who has cared for someone with such an illness will understand the near impossibility of it. When we finally did arrive at the park, it was a disaster.

I really wanted my grandmother to die

Looking back now, the sheer mental exhaustion of trying to care for someone with Alzheimer’s seems like some sort of chaotic-good fever dream. But at the time, it was unbearably difficult to live through, and anyone who has cared for someone with such an…

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3 months ago
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Showing up And I told her what my biggest fear was. What if Monica didn’t die? What if she just got increasingly disabled but lived a normal lifespan? She was 49, that could be another thirty years or more. Things were already bad. Left arm paralyzed, left leg barely able to move. Needing help to and from a toilet or a shower. Left side of her face paralyzed.

Showing up

And I told her what my biggest fear was. What if Monica didn’t die? What if she just got increasingly disabled but lived a normal lifespan? She was 49, that could be another thirty years or more. Things were already bad. Left arm paralyzed, left leg barely able to move. Needing help to…

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3 months ago
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Glowworms Ann Patchet's piece on the death of her best friend, mother in law, and dog is a reminder that being a secondary caregiver and providing respite care can be a deeply moving experience: "In the last week I would ever spend with one of the best friends I’ve ever had, I was given the gift of being supremely useful. I brought him vanilla ice cream and black coffee.

Glowworms

Ann Patchet's piece on the death of her best friend, mother in law, and dog is a reminder that being a secondary caregiver and providing respite care can be a deeply moving experience: "In the last week I would ever spend with one of the best friends I’ve ever had, I was given the gift…

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3 months ago
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How are you doing? Abby VanMuijen and Michelle Pera-McGhee put together a cool interactive piece on The Pudding. It asks how you're doing and then walks you through the steps to identify the different, perhaps contradictory, things you're feeling. It helps you name and visualize your emotions, especally if this is something you don't normally do. In addition to the story and exercise, there's also an activities page. Check it out on The Pudding.

How are you doing?

Abby VanMuijen and Michelle Pera-McGhee put together a cool interactive piece on The Pudding. It asks how you're doing and then walks you through the steps to identify the different, perhaps contradictory, things you're feeling. It helps you name and visualize your emotions,…

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4 months ago
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Book review: House of God "Someone once said that the point of art is to be more real than reality. The House Of God is way more real than reality. Reality wishes it could be anywhere close to as real as The House of God. This is a world where young people – the kid just out of school, the blushing new mother – die. Even normal old people – your grandmother, your grandpa – can die.

Book review: House of God

"Someone once said that the point of art is to be more real than reality. The House Of God is way more real than reality. Reality wishes it could be anywhere close to as real as The House of God. This is a world where young people – the kid just out of school, the…

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4 months ago
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I will be glad when my mom dies "Fearing that you will regret being estranged if someone suddenly dies is the bogeyman of going no contact. I’m not afraid of this. My mother has effectively been dead to me for two decades. I grieved her a long time ago and have made peace with the fact that I will likely never be in the same room with her again while she is alive.

I will be glad when my mom dies

"Fearing that you will regret being estranged if someone suddenly dies is the bogeyman of going no contact. I’m not afraid of this. My mother has effectively been dead to me for two decades. I grieved her a long time ago and have made peace with the fact that I will…

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5 months ago
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I’m Stuck Caring for a Husband I No Longer Love "I’ve been married to my husband for 35 years. He is 88 and I’m 79." "He apparently believed that once the courtship and honeymoon were over, he could start behaving like an entitled jerk (my words, not his). I’ve made attempts to leave, none of which panned out. During my third attempt, about 10 years ago, it became clear to me that my husband was in cognitive decline.

I’m Stuck Caring for a Husband I No Longer Love

"I’ve been married to my husband for 35 years. He is 88 and I’m 79." "He apparently believed that once the courtship and honeymoon were over, he could start behaving like an entitled jerk (my words, not his). I’ve made attempts to leave, none of…

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6 months ago
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Depression 101, for Newcomers What if saving your child’s life was up to you? Or, perhaps it's your niece or nephew, or your neighbor.  In our patchwork mental health system, it might be. As school starts again, someone near you will start living a bare bones version of life (my daughter’s way of putting it.)  As school, band, sports and social activities pick up, so does the pressure. 

Depression 101, for Newcomers

What if saving your child’s life was up to you? Or, perhaps it's your niece or nephew, or your neighbor.  In our patchwork mental health system, it might be. As school starts again, someone near you will start living a bare bones version of life (my daughter’s way of…

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6 months ago
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Who’s going to be there for me when I’m old? "We hear a lot about the ‘Sandwich Generation’, those women (it’s always bloody women!) who are juggling caring for aging parents alongside their teenage children and work commitments. What we hear very little about though, is what Kirsty Woodard, the original founder of AWOC, named the tightrope generation: those one in five people without children, many of whom find themselves caring for aging or vulnerable family members or friends without anyone who might do the same for them in the future—especially as it’s more often those without children who seem to be 

Who’s going to be there for me when I’m old?

"We hear a lot about the ‘Sandwich Generation’, those women (it’s always bloody women!) who are juggling caring for aging parents alongside their teenage children and work commitments. What we hear very little about though, is what Kirsty Woodard, the…

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7 months ago
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‘There are times I feel I hate them’: how siblings can clash over end-of-life care for elderly parents "She’d been worried about them – her mum had been diagnosed with Alzheimer’s disease and her dad had been having frequent falls. For years she’d been trying to get them to talk about whether they needed to move to aged care, to assess their financial situation and face what was coming next, but they’d dismissed her, saying they were fine.

‘There are times I feel I hate them’: how siblings can clash over end-of-life care for elderly parents

"She’d been worried about them – her mum had been diagnosed with Alzheimer’s disease and her dad had been having frequent falls. For years she’d been trying to get them to talk about whether they…

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7 months ago
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How to Pay for Long-Term Care "Like child care, long-term care is expensive. Like child care, people who work in long-term care are underpaid. Unlike child care, most of the cost is covered by government subsidies in the form of Medicaid. The catch is that to qualify for Medicaid, you have to have spend down almost all of your assets. Essentially, you have to go from middle class to poor.

How to Pay for Long-Term Care

"Like child care, long-term care is expensive. Like child care, people who work in long-term care are underpaid. Unlike child care, most of the cost is covered by government subsidies in the form of Medicaid. The catch is that to qualify for Medicaid, you have to have…

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