I’m Victoria. I live in the UK, and I’ve been caregiving since 2015. I’m building Carer Mentor: Empathy and Inspiration for caregivers and anyone with a chronic illness or health condition.

I launched the website on my Dad’s birthday in 2020, the first without him. I joined Substack in October 2023 and could finally build the community support network I’d envisaged, with this fifth evolution of Carer Mentor.

I’m continuing to build Carer Mentor through collaborations, anthologies, and articles while caring for my mother.

The Carer Mentor website is a hub of tools, resources & insights, as well as a community support network. A portal of hope ❤️

All the articles and resources are freely available. You’ll soon realise how much time, passion and effort I put into supporting carers. If you’d like to support my work, please consider upgrading your subscription to a monthly or annual subscription. Thank you!

Subscribe now

To help you navigate the website:

If you’re on the cusp of caregiving, for example, you may be trying to have conversations about how you can support your parents

1. Explore the Giving and Receiving Care Anthology, in particular the sections:

   1. Are you a carer, on the cusp of caregiving - many people don’t self-identify as a carer despite the creeping amount of support and help they do.

   2. “Starting the discussions and managing someone else’s affairs”

2. Here’s a link to some support organisations that can offer online/live support.

If you’ve been caring for someone for a while

1. You may like these “Caregiving hacks and tips” for your care routine.

2. Perhaps you’re going through a hospital admission or emergency, and need advice about how to advocate for your loved one? Here are some useful articles: ‘Hospitals, admissions, experiences’

3. Maybe you’re stressed, lost and trying to stay afloat - we’ve all been there! Here’s a useful resource: “Managing the mental load. Understanding and enabling yourself’

4. You may resonate with “Caregiving Misperceptions and Realities. What are our socially conditioned assumptions about caregiving, caregivers and respite? What can we do to support one another in our communities?”

If you’ve been caring for a long time, I see you. You’re not alone. Many of us have rollercoastered for a long time.

1. I created the “Letters from a Caregiver” collaboration so each of us can offer our younger selves compassionate wisdom. There’s a wealth of wisdom within this collaboration of letters and from readers’ comments.

2. ComfortZone holds numerous recommendations for music, podcasts, films and TV series, to distract our minds and thoughts and be entertainment on-demand.

For anyone who is experiencing bereavement and grief, I think this anthology will offer resonance and community: Bereavement and Grief Anthology.

If you’re looking for resonance around particular chronic health conditions, you can find other caregivers and care-adjacent publications by exploring these anthologies. Each anthology includes a directory of writers and articles that I’ve read and recommend to our community.

1. The Dementia Anthology

2. The Cancer Anthology

If you’re caring for your parents, or an older family member/friend who has a chronic health issue or an increased need for care support due to declining health, mental capacity, or physical frailty.

• An Anthology: Eldercare / Caring For Parents

If you’re caring for a child with special needs, a disability, a rare disease, autism, cancer or another health condition, meet other caregivers in this community network

• Caregiver’s who are parents “Ask us anything”

If you’re interested in learning how the first rollercoaster of caregiving started for me:

• ‘A Prelude to Caregiving: Love and Torture.’ 2015 hospitalisation was only the beginning.

Please like ‘❤️’ the article to guide others here.

If you know someone who could benefit from these resources, please share Carer Mentor with them

Please share this article/restack in Substack so others can find these resources. Thank you!

Subscribe now

Share Carer Mentor: Empathy & Inspiration

You can read about why I started Carer Mentor: Empathy and Inspiration here. I recommend using the quick-start navigation guide to explore the website.

Caregivers who are parents.

At its core, Carer Mentor offers heartfelt empathy for Caregivers. The anthologies help us recognise the very human paradox of caregiving: the individuality of our personal situation and, at the same time, our universal common humanity. On the one hand, our individual circumstances, struggles, cultures, values, and backgrounds make our experiences unique. On the other hand, we’re united by universal life experiences: birth, death, emotions, and vulnerabilities; our humanity.

Another dimension we don’t often discuss is the relational dynamics. I focus on eldercare/caring for my parents, but many friends care for their spouse, child, or sibling. Plus, caregiving stretches beyond blood ties these days. Various forms of kinship care, care communities, or caring amongst chosen family are being formed.

Caregiving for someone who has health issues or a disability is different when they’re your parent or older, compared to when it’s your child.

I’m not familiar with caregiving for a child, but I’d like to hold more space for those experiences as well as other types of caregiving. So, I’m introducing a new Carer Mentor collaboration project to facilitate more community connections and discussion.

Meet caregivers who share how they’re caring for a child with special needs, a disability, a rare disease, autism, cancer or another health condition.

• ‘Caregiving As A Parent’ discussions will be on the first Friday of every month.

• It’s in the form of a discussion thread for easy reference.

In the comments discussion “Ask The Team Anything”:

1. Victoria’s question to everyone:

   “What do people get wrong about your caregiving as a parent?”

2. Share and reply to each other’s comments/questions

3. Feel free to explore ways to share, connect, and collaborate together.

Let’s remember that what works for one person may not work for someone else. Let’s lead with empathy.

Leave a comment

The next ‘Caregiving As A Parent’ discussion will be on Friday, May 1st.

It will be hosted by Maria Messer at her “Holding Both” publication.

Read more about the Team

As the first discussion, I’m pleased to introduce you to our 12 team members. Enjoy reading more about the team.

1. Chris B

2. Amy J Brown

3. Sara Clime

4. Anna De La Cruz

5. Donna Giles

6. Haley Haddow

7. Bud Hager

8. Cooky Howitt

9. Mary Beth Kaplan

10. Serena Menken

11. Maria Messer

12. Denise Servais

1 & Bray Bray - United States

Hi, I’m Chris B., and I care for my son Bray Bray. We live in Long Island, NY, along with my wife Melanie. Bray Bray was born with a rare genetic disorder called GNAI1, which has caused many development and medical issues — global delays, legal blindness, hypotonic cerebral palsy, obstructive sleep apnea, and seizures. Bray Bray cannot talk and cannot walk, but his smile lights up the world and we strive to give him all of life’s adventures, even if it’s in his wheelchair.

My Substack publication is Chris B. Writes. I write a mix of poems and posts about caregiving for Bray Bray as I share my raw and honest perspective as his dad and witness to his warrior journey. I tend to say more with less, and poetry is my usual outlet during my most vulnerable, emotionally charged moments.

When I am not writing or engaging with my fellow Substackers, I work in public relations and content writing/editing. I also love playing pickleball and beach volleyball, and am blessed enough to be able to do so as a physical outlet and form of exercise.

Key Takeaway: I’ve always prided myself on hustling and putting in the effort. What Bray Bray has instilled in me goes even one step further. It’s not just about the grind; it’s about not letting those hardest moments change the core of who you are.

Read some of Chris’s work:

The Hours, A Caregiver’s Poem & Song…

Sleep…

2 - United States

Hi, I’m Amy J Brown. I’m a writer, mentor, and spiritual director living in Michigan. I’ve spent over 33 years as a mom of six, 25 of those parenting children with invisible disabilities. Three of my kids are adopted, and I know firsthand how lonely, exhausting, and overwhelming it can be to love a child through trauma, mental health struggles, and attachment issues. I’ve lived it. I’m still living it.

As a spiritual director with an MA in Spiritual Formation and Leadership, and author of The Other Side of Special: Navigating the Messy, Emotional, and Joy-Filled Life of a Special Needs Mom, I believe that caregivers need more than advice — you need a safe, shame-free space to be truly heard. Whether you’re parenting a child with special needs, caring for aging parents, or simply running on empty, you belong here. You can find me at; More than a Caregiver: where I write about life giving practices for the overwhelmed caregiver.

I believe your story matters. When we share honestly, we learn from each other, gather strength, and remember we are not alone. My greatest privilege is sitting with women in the hard places and reminding them there is still peace and hope to be found.

You don’t have to keep doing this alone. I’m so glad you’re here. If you are new to my work, start with these two essays. Building a Ramp: Parenting Kids with Invisible Disabilities and It’s Not Supposed to be This Way: Learning to Stand in the Space of What is and What We Want it to Be.

3 - United States

I’m Sara Clime. I’m based in a small Midwestern US city. No, there’s not much here. Yes, I’ve made peace with that.

I’m a caregiver, systems nerd, and a firm believer that a good organizational system can genuinely change your life. I write Sanity & Systems because caregiving is too heavy to carry alone, and we all need people who know exactly how chaotic, beautiful, and absolutely unhinged this life can be. The systems keep me sane. Ish.

My life took a major turn in 2012, when my youngest son, TJ, was diagnosed at the age of 8 with Duchenne muscular dystrophy (DMD). DMD is a progressive, degenerative, and terminal condition. Overnight, I became a disability parent, medical director, advocate, and protector, all while still trying to remain myself. What I learned, often the hard way, is that a diagnosis can change everything without erasing who you are. But it will demand more from you than most people ever see.

So, I built systems, binders, spreadsheets, and tracking sheets, not because I had it together, but because I absolutely did not. Those systems became the Care Support System™, which I now share with other caregivers. Sanity & Systems is the human side of all of that. Real talk, practical tools, and the steady reminder that you are still a whole person, not just a caregiver.

Beyond caregiving, I’m a virtual assistant and consultant, a co-author of The Other Side of Special, a former podcast co-host, and a public speaker. I’ve been married to my husband Craig for 28+ years. Together, we’ve raised two amazing young men.

Something I need you to hear: You’re allowed to hold grief and gratitude at the same time. The jealousy, the anger, the days you resent the life you didn’t choose: those don’t make you a bad caregiver. They make you human. You’re not behind. You’re not broken. You’re not failing.

If you’re new to my writing, start with these two essays. They’ll give you a great sense of what Sanity & Systems is about: How I Learned to Build Systems When Life Fell Apart, and It’s Okay To Be Okay.

4 - United States

Anna De La Cruz is a mom of three, daughter to parents with dementia, and sister and guardian to a brother with Down Syndrome. She has spent her career working in philanthropy, social impact and gender equity worldwide, with a focus on Latin America. Her personal experiences with caregiving over the last decade have fueled her passion to build community and awareness around the needs of caregivers, and shed light on solutions to the care crisis in the US and globally. Anna’s publication is “Gen Xandwich”

Read more about Anna and her brother Leif here:

The Limits of Being Seen. What my brother with Down syndrome taught me about true representation

When the Waves Keep Coming: Trust yourself

5 - United Kingdom

I’m Donna, I am a mother and a wife, a daughter, a sister and a friend. I write “Life and Other Stories”

I was born with a complex congenital cardiac condition – tricuspid atresia, pulmonary atresia, TGA and ASD. This means I have a right-sided single ventricle condition. I have had open heart surgery on 2 occasions, and several scary moments…. but I’m still here… at 58 I am grateful for that fact.

My son, Nathan, and my daughter, Cerys, both have Cerebral Palsy and are full-time wheelchair users. Nathan has a degree in politics and sociology and is currently working with local colleges and universities to train social workers. Cerys is currently at college and is creative, running her own little business selling cards to friends and family. We are incredibly lucky to have a team of PAs and Carers to assist them in living well the way they want.

This creates a very busy household, especially if my husband is also home. At times, there can be the 4 of us, plus a PA for Nathan, and 2 carers for Cerys.

Read some of Donna and her family: A Day in MY Life, otherwise known as “Welcome to Chaos!”

6 - United Kingdom

Hi I’m Haley based in London, UK and I’m a mother of two. My youngest son Max (not his real name) is autistic and non-verbal.
In my early twenties, I followed my passion for adventure and travel by living as an expat in the United Arab Emirates. Later, returning married and expecting my first child, I established a glass art studio. I then relocated back to the UK when Max was diagnosed with autism and am now his full-time carer, putting my career as a glass artist on hold.

Since his diagnosis at the age of three, advocacy has become a defining part of my life.
Special Educational Needs (SEN) parents are often thrust into situations and circumstances that are beyond their control. The early years can feel isolating and overwhelming, but they can also be a catalyst for growth, resilience, and connection. My lived experience allows me to understand this deeply. While people often see strength in caregivers, they rarely see the interior world. Through my publication “Thousands of Us” I share my own and others’ stories to illuminate what so often goes unseen.

Read more about Haley and Max:

• “The Other Side of Caring “You failed him. And you’ve failed us.

• “The Sunflower Lanyard Max had been seen. He had been capable. He had been useful and ...just simply included.”

7 - United States

I go by my second middle name (I have three), Bud, because it’s easier to remember and baristas never misspell it. Deciding that I wasn’t a fan of having money or a solid sense of self, I became an academic, eventually earning a graduate degree in clinical psychology and a licensure as a psychotherapist. After working with people deemed incompetent to stand trial by reason of insanity, typically of a violent psychotic nature, managing a community mental health clinic and training new therapists, I felt ready to become a father. I was woefully unprepared and remain a poor judge of my abilities.

Along with my wife, I am a caregiver for our daughter, Emma, who has pachygyria, a rare neurological disorder. I believe in taking an active approach to advocating for my child and others like her. To this end, I sit on various advisory councils at Rady’s Children’s Health (RCH), volunteer on consulting and directing boards for various non-profit centers, and lend my writing skills where I can. Experiencing a lack of support for parents of medically complex children, I founded a support group through RCH focusing on parent-to-parent interaction.
In addition to being the primary caregiver for my daughter, I am a psychology professor, have a small private psychotherapy practice (that is mostly filled by pro bono work for parents of newly diagnosed children), I advocate endlessly for my daughter, and am hopelessly devoted to my wife, both of whom I believe quite definitely hold the secrets to the universe.
Sometimes I write things at Our Little Kartoffel.

Read more here:

Our Little Kartoffel Words about fatherhood, grief, wonder, and the work of paying attention.

Rare Disease Day

8 - United Kingdom

Hello to you all! Delighted to be here. My name is Cooky Howitt, I Iive in Devon, UK with my husband and two young adult children. Our youngest, Olivia (not her real name) is 19 and has Down’s Syndrome, ASD with a PDA profile, and ADHD. She also has some accompanying physical disabilities. She is officially SLD (severely learning disabled), non-verbal, still in nappies, and needs 1:1 support 24/7. Looking after her is pretty full-on but very rewarding: she’s a huge personality and full of silliness.

I don’t think that my family is particularly special or different, and it certainly never occurred to me write about us in any way. But then, for several months encompassing the whole of 2025, Olivia developed a severe but mysterious gynae-related condition, which quite simply made our lives a living hell. She changed personality, becoming violent for 3 weeks out of every month, and almost totally stopped sleeping. We called 999 5 times, 3 of those involving the police, we rang 111 23 times, and I made well over 150 phone calls in total to health professionals during the year.

Desperate for an outlet, and already an avid Substack reader, I started writing Extreme Parenting. I couldn’t believe what was happening to us, and why nothing was really being done to help. I’m a compulsive communicator and it all just came pouring out. Eventually, due to us constantly agitating on her behalf, Olivia was admitted to hospital, scanned and they discovered that she needed immediate emergency surgery. She has now made an almost full recovery, although it was not straightforward. But here I am still writing! Not as much as I did, for sure, but it’s so cathartic.

Advice for other carers? Difficult as we all have to find our own coping mechanisms. Two things are probably universal though:
1. Community: my kickass SEND mum friends in particular, alongside close friends and family who really get it. They all felt helpless when things were bad, but they kept checking in which helped counter the isolation that extreme caring brings.
2. Fun: both with your child and without them. The beach and stories with Olivia. And without her, disco dancing and cocktails have definitely got me through the last 20 years with a smile on my face.
But you do you!

When I’m not a carer, I’m a careers coach, a true vocation which I absolutely love. I had to put my new company on hold for most of 2025 because of Olivia’s health, but am back into it now which is a wonderful feeling.

Caring is actually the last thing I want to read a book about - I have quite enough of it every day! Having said that, I do enjoy articles, especially other carers’ Substacks. I am a huge fan of Katy Styles’ organisation We Care, which has done so much for us all as a family. She sends out an excellent weekly newsletter round-up which is a life-saver, and here’s the instagram.

It was two guests on that podcast that inspired me to start Extreme Parenting, and Katy then read out my first ever Substack post at the Lib Dem conference last year, which was such an honour.

Olivia watches Finding Nemo at least once every day, so I’m going to leave you with Dory’s wise advice: “Just keep swimming”. It’s all we can do.

Read more here

Highly extreme parenting PDA and Norovirus: a delightful partnership

9 - United States

I’m Mary Beth, a mama to my three beautiful kids, and wife to my best friend. Poet-in-progress, writer, yoga teacher-in-training and forever student of life. I live in Northern Indiana in the U.S.

Mantras and Coffee, my publication on Substack, began as a seed of an idea a few years ago. As I sat in my morning meditation…mind wandering… I knew I needed to share my findings, in the hopes of creating an easier path for others to get to that sweet muted place. That tender heart space I came to rely upon so often, as well as, to solidify what I learn, too, for a deeper, more connected understanding. A place to stop by when things seem overwhelming and chaotic. A place to take a moment for the self, to take a breath, a pause, and to remember what it’s like to be alive. Perhaps it may even act as a reminder that we all actually do have souls dwelling deep within all of us. We all need to catch our breaths and reset, from time to time. My hope is you feel better, calmer, more centered and more in rhythm with your real self after visiting.

For me, guiding, helping and loving my family is my top priority. The last few years have been especially challenging in that we have had to traverse up the mountain of childhood cancer.

Our eldest son, Jonah, was diagnosed in August of 2022 with HR B-Cell Acute Lymphoblastic Leukemia. He is now fully recovered. It was a very intensive, full-time job. I was tethered to my boy and ready for anything throughout the entire process of his active treatment.

Writing has become a close friend, and a healing way for me to release all the things, over these last few years.

The written word, mantras, along with prayer, and poetry were key in helping me deal with the extreme emotional ups and downs of our son’s recovery from cancer. Even now, in post treatment life. These modalities have helped to keep me steady during some of the roughest periods. The best gift in finding these coping methods, has been the healing part. The second best, has been being able to do it, from anywhere, while being the caretaker, my son (and his siblings) deserve and need daily. I’m beyond grateful. Even in all life’s glory and in the most tragic moments, we always learn something. Day after day, constantly being inundated with EVERYTHING, we all need a little help sometimes. We are all in this together. Even caregivers need caregivers.

Something to begin with, if you are new to my work…

With One Palm Open, And One To Your Heart : how the written word, mantras, prayer, and poetry helped me deal with the extreme emotional ups and downs of my son’s recovery from cancer

10 - United States

Hi, I’m Serena Menken. I’m a writer, non-profit leader, and mentor. My husband and I live in the Midwest with our three teenagers and a rambunctious dog. Five years ago, our world was turned upside down when our oldest daughter, Ellie, hit a crisis point with her mental health. Somehow our beautiful, talented, creative daughter was so depressed that she wanted to end her life. Her anxiety kept her paralyzed. Her eating disorder led to deception and self-destruction. Even when we got her into treatment, she spiraled into deeper darkness. It was an excruciating year of rushing to find the right support while waiting in despair.

Five years later, our daughter has made a solid recovery and she’s thriving in college. Over the past five years, we’ve also learned that our daughter is on the autism spectrum; both our daughters have ADHD. Now my mission is to support parents who feel as exhausted, lonely and hopeless as we did. In my Substack, called Evidence of Grace, I write about parenting teens with mental health struggles and/or neurodiversity from the lens of faith, authenticity and hope. Whoever you are and whatever your kid is facing, you belong here. I’ll share my stories and I’d love to hear yours.

When I’m not writing, I love an extended bike ride through a forest preserve, a leisurely cup of tea with a friend, or a quiet moment to journal and pray.

If you’re new to my work, start with these essays: The Grief No One Tells You About and Hidden Strength.

11 – United States

I’m the writer behind Holding Both, a space for the tender mess and quiet magic of living a life that didn’t unfold the way you planned. Through deeply personal essays, I explore what it means to hold grief and joy at the same time, to parent in complexity, and to lead with humanity inside uncertainty.

I’m a mother through adoption to children whose needs have reshaped everything, and a Special Education leader who understands disability from both sides—professionally and painfully personally. My life sits at the intersection of caregiving, systems, mental health, and fierce, complicated love.

I write Holding Both because there aren’t enough places that tell the truth without trying to fix it. This work is about making meaning, finding steadiness, and reminding others they are not alone—even when the path is unclear.

If you’re new to my work, here are a few pieces that reflect this journey:
The Passenger Seat - A moment that changed everything, and the quiet, terrifying realization that I was no longer in control of where our life was headed. This essay explores what it means to keep showing up when you’re no longer the one driving.

He Came Through the Doors - The day my son entered residential care—holding both the heartbreak of separation and the unexpected relief of safety. A story about love, survival, and the impossible truths caregivers carry at the same time.

Before There Was Language - A reflection on the earliest days of my son’s medical and developmental journey—before diagnoses, before language, before understanding. This essay traces the moment everything began to shift, and the one thing that never did: love.

12 - United States

Hi, I’m Denise Servais from St. Paul, Minnesota. I write Ground Level on Substack, where I share about resilience, caregiving, grief, and love. This space is for anyone learning to live inside a life they didn’t plan for.

I’m a mom to three daughters, including my 21-year-old daughter, Maya, who has Prader-Willi Syndrome. My husband, Jeff, and I have been married for 30 years.

My writing lives in the space most people don’t talk about honestly—the mental load, the constant recalculating, the quiet grief, the unexpected humor, and the kind of love that doesn’t fit neatly into milestones or progress charts. I write essays in the hope that other caregivers feel a little less alone, and a little more understood.

Outside of caregiving, I’m a speech-language pathologist working in schools with students from elementary through high school. I’ve spent over 25 years in this field, but the most meaningful lessons about communication didn’t come from textbooks, they came from living it at home.

One thing I’d share with another caregiver: it’s easy to measure yourself against the wrong things. The world will hand you a checklist, but you get to decide what actually counts.

If you’re new to my work, these two pieces give a good sense of what I write about:
The System Is Working, Just Not For Us
The Compliment I Don’t Correct

Please remember to ‘❤️’ LIKE the article to guide others to these resources.

Subscribe now

“Ask The Team Anything”

1. Read a profile, ask a question

2. Share and reply to each other’s comments/questions

3. Feel free to explore ways to share, connect, and collaborate together.

I’m Victoria. I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️

You can read about why I started Carer Mentor: Empathy and Inspiration here. I recommend using the quick-start navigation guide to explore the website.

You’ll find this article and growing ‘navigation’ articles in the Community Hub:

What You Need to Know Before an Unexpected Hospital Trip

Have you called for paramedics before? What happened the first time you dialled for emergency services when there was a crisis concerning the person you care for? What did you grab? Did you go in the ambulance? How long were you in the emergency department/accident and emergency department?

Before my father died in January 2020, I lost count of the number of times I dialled 999 for an ambulance in the middle of the night for him. He experienced several atrial fibrillation episodes, cardiac events, and a couple of bad falls. Congestive heart failure, rheumatoid arthritis, cancer, along with vascular dementia, and organ issues. All these health issues meant we were walking on eggshells; hypervigilance was our norm.

If you’ve cared for someone with congestive heart failure and compounding health issues, you’ll know how tricky things can be. We had to figure out what to do with what circumstances, what worked for Dad, and how to recognise when things were escalating.

This untrained, non-medical carer took the lead in emergencies time and again through trial and error. An emergency doesn’t start when you pick up the phone; it starts when you sense, very literally, that something is wrong. Do you, don’t you call for paramedics? A loud crash and thump is a faster 0 to 100% adrenaline and call compared to trying to decipher a nuanced change when they’re already very weak.

The hardest, most heartbreaking moments were having to argue with Dad about calling for the paramedics. He didn’t want to go to the hospital, and we didn’t want him admitted to that hospital either, but some events require hospital intervention.1

I’m sure there are people curiously wondering, ‘Why can’t you just pick up the phone and get the ambulance?’ The shortest answer is that nothing is that simple, cut and dry, explicit or easy to decipher. Will the symptoms subside and calm after…how many minutes, a few, an hour? When do you counter someone’s wishes? Having vascular dementia doesn’t automatically switch off their mental capacity, nor would I want it to! So, here in the UK, as attorneys of Dad’s Health and Welfare, we always acted per his wishes (the Lasting Powers of Attorney (LPA) for Health and Welfare). So, how do you decide whether to call the paramedics at 1 am, when someone can still express their wishes and has mental capacity? I can only recommend starting to discuss ‘wishes’ now, getting the paperwork done, and seeking advice from a doctor/expert. There is no cookie-cutter answer. Sorry! For example:

• UK - When to call 999 and what happens in the call.

• US - The American Heart Association - when to call 911

• Canada - Heart and Stroke Foundation of Canada When to call 911 Emergency signs

Two weeks after Dad passed, we pivoted to my mother’s cancer surgeries, one after another, and then chemo, and then radiotherapy. So, I’m a seasoned ambulance passenger, a primed ER-cubicle camper; a carer based in the UK.

The shortest wait time in the emergency department was 6-8 hours with a subsequent discharge home. The longest was from 3 am to my Dad’s admission to a ward around 4 pm. And that was only the start of that hospitalisation journey.

Contrary to popular belief, a carer’s work doesn’t end at the door of a hospital. When the comfortable care routine is lost to a crisis, we suddenly have to dial UP our roles as the shield, the buffer, the translator, and the advocate for our loved one, their needs, their rights, AND our own!

Reclaiming some control in an emergency: 2 Go-Bags and a To-Do list once admitted

Having been in many emergency situations, we’ve developed a process that works for us. It may help you too

What worked was having one hospital go-bag for my parent and one for me. Each had its own purpose and essential contents.

The aim: to keep us comfortable for 8-12 hours, or longer if absolutely needed; to be ready for admission.

The benefit: I know the bags are always ready, primed for grab-and-go. A piece of control and calm amidst the escalating crisis. Something I can literally cling to when I’m having PTSD flashbacks of every previous ambulance trip, and walking that same hospital corridor.

🎁 FREE Download

Click here to sign up to receive “Go-Bag and Admission Checklists.” This contains 3 checklists that you can download for free using this link

I want you to have these, so you're primed for an emergency. These are NOT random lists of items. They’re curated checklists I use to pack and repack what we need in these crises. Each item and action has a story.

For example, a water bottle and a plastic straw. It’s not easy to give someone water when they’re lying down on a hospital bed. It dribbles out the side of their mouth, making everything wet. One health assistant tried to be helpful by getting a paper straw from the nurses’ station. But after a short time, the straw became wet and mushy, making it impossible to drink. A plastic straw stays intact.

Every essential item has a purpose. These insights need to be shared.

I recommend reading each checklist in detail to see how they link together.

Next steps

1. After reading the checklists, please comment below. What are your learnings from an emergency situation? What questions do you have?

2. If you’re new to Carer Mentor, this article can help you navigate all its resources: Start Here. Hello, New Readers!

Please like ‘❤️’ the article to guide others here.

Please restack this article so that others can benefit from these free resources and meet others who understand.

Subscribe now

Share Carer Mentor: Empathy & Inspiration

This post is a rolling list of tips and recommendations that I regularly share with others.

These are not hacks to accelerate subscriber growth.

Here are some essentials I use to manage my Substack publication.

This rolling list will get updated steadily over time. There may be amendments if/when functions change in Substack.

Table of Contents

1. My publishing approach and context for recommendations

2. The once-and-done list

3. The regular must-dos

4. Every time I do this…I do this

Read more

Hello, Dear Reader! Welcome to our new Carer Mentor community members!

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

In July, A Special Carer Mentor Collaboration had a ‘Jerry Maguire moment. Planning happened in August with our thirteen-strong team. Here we have the full content of …not just our team but also contributions from writers/creators who accepted our invitation to Care About Crying with us!

Please ‘❤️’ LIKE the article

Collaboration Background:

The Carer Mentor Collaboration Premise and Background.

These four articles sparked the ‘Jerry Maguire’ invitation to collaborate.

1. Don't Be Sad, He Said. Putting the Cancer Grief into a Box by KRISTINA ADAMS WALDORF, MD  at After He Said Cancer

2. Good News! I Cry Pretty Now Progress. . . I Guess By ANNE at The Future Widow

3. Memorial Planning as a Way to Avoid Grief Processing. I'm not actually recommending it. By ANNA DE LA CRUZ at GenXandwich

4. Sacred Tears How to be with others as they cry By CHRISTINE VAUGHAN DAVIES at Journeying Alongside

September Anthology Index:

The Caring About Crying Anthology. We All Cry. You’re Not Alone.

1. Sept 1 Launch article: Caring About Crying. We All Cry. You’re Not Alone By Victoria at Carer Mentor: Empathy and Inspiration

2. Sept 2 & 14 Crying: 'Did you know?' Resource: Tears the science and some art. By Victoria at Carer Mentor: Empathy and Inspiration

3. Sept 3 'Cry, Baby. Why Our Tears Matter' A Podcast Interview. Dan Harris and Dr Bianca Harris of Ten Percent Happier with Reverend Benjamin Perry. By Victoria at Carer Mentor: Empathy and Inspiration

4. Sept 4 ‘In Conversation with Rev. Benjamin Perry’. Victoria interviews the Author of 'Cry Baby: Why Our Tears Matter' By Victoria at Carer Mentor: Empathy and Inspiration

5. Sept 5 ‘My stoic mom's parting gift. Making peace with tears’ By at

6. Sept 6 We Invite You to 'Care About Crying'. By Victoria on behalf of the team.

7. Sept 7 Triggered. Caring About Crying Anthology By at and at The Future Widow

8. Sept 8 'Can't Cry. Want to Cry??' A Caregiver's Paradox of Human-ing. By Victoria at Carer Mentor: Empathy and Inspiration

9. Sept 9 AWC Town Bulletin - On Crying A Discussion Thread

10. Sept 10 The Healing Power of Tears. How giving myself the permission to cry a good cry helped me process unspeakable pain and lifted me out of deep depression. By Lily Pond

11. Sept 11 My Tears are not a Grief Gauge. Crying through Ages and Stages By at Gen Xandwich.

12. Sept 13 Sweet Relief. After He Said Cancer | A Memoir By at .

13. Sept 15 When was the last time you cried in public? Moving from private grief to community healing by Mariah Friend at Heartbeats

14. Sept 16 Crying While Parenting: A Mindful Approach by at Dr. Amber_Writes.

15. Sept 17 Cry, Baby, Cry By Louisa Wah at Lily Pond

16. Sept 18 Why we stop crying by Rachel Ooi at Conscious Living

17. Sept 19 Carer Mentor Collaboration: my cup overfloweth with my tears By Christa Lei (They/Them) at Is This What You Want?

18. Sept 20 Rain, Drought, Whereabout? An essay on crying, and its impact on those who care. By at Stories and States

19. Sept. 22 Dark Night of the Soul: How Spiritual Crisis Can Lead to a New Dawn by Christine Vaughan Davies at Journeying Alongside

20. Sept 24 We Need a Cultural Container to Hold Each Other's Pain and Tears by Louisa Wah at Lily Pond. And thanks to for this poem

    

21. Sept 25 An Inheritance of Silence. On an heirloom of hushed tears, and rejecting this legacy for the next generation by at Notes from the Town Hermit

22. Sept 27 Why are Queer Tears Not Enough? by at Is This What You Want

Articles shared by readers/authors in the invitation

• "Constructive Wallowing: How to Beat Bad Feelings by Letting Yourself Have Them" by Tina Gilbertson

• Bylsma L.M., Gracanin A., Vingerhoets A. The neurobiology of human crying. Clin. Auton. Res. 2019;29:63–73. doi: 10.1007/s10286-018-0526-y. - DOI - PMC - PubMed

• Taylor Coffman (Rare Disease Girl), thanks for sharing the video. Happy tears, and capturing your 'Happy Ever After Moments' (Sept 8)

  ‘After everything you've been through makes so much sense, and is a great tip for caregivers as well. When I was caring for my Dad, I used to 'memory capture' the moment - use all my senses to imprint the memory. This is how I found 'piercing joy' in the darkest moments’. - Victoria

• Neha Dhami wrote this beautiful poem Empathic Echoes: Reflections of the Soul (Sept 7) Tale #16: Reflections of Empathy that explores 'the deep resonance of human connection and the powerful echoes of our shared experiences.'

• Dr. Vicki Connop shared this article 'The antidote to depression may not be what you think. Reflections from both sides of the therapy room.' (Feb 25, 2024)

  The most powerful antidote to depression may not be what you’ve been led to believe. My decades of working through my own pain, and sitting alongside other people as they navigate theirs, have taught me that we’re often looking for it in the wrong places. It’s not joy, or gratitude or positivity. It’s not exercise or eating well – though these things can undoubtedly be helpful.

  The most powerful antidote I’ve found to depression is to fully feel your sadness. Or rage. Or shame.

  Does that sound paradoxical?

• Louisa shared this article by Susan Frybort. IT'S OKAY TO CRY...It's Okay Not To Cry (Feb 16, 2024). The reflections resonate and match those shared by Reverend Benjamin Perry in our conversation.

  It's okay to cry. It’s okay not to cry. It’s alright to take your time and wait for the primary emotion to surface and allow the immediate response to hold the space.

  Whatever is coming up for you in the moment works or whatever slowly makes its way out after awhile is valid, too. Because emotional responses can be raw, mixed, complex or have their own method of being known.

• at Cancer Diagnosis has written ‘I Cried In Front of My Patient. And she wrote me a letter.’ This is a touching example of how healthcare professionals are torn in the moment with tears. I’m glad that Cheyenne received such a lovely affirmation of her empathy.

• has written a beautiful poem. Those last lines! My Tears Flow Like a River Wild. Her publication is Pathways of Connection. Tissues, please.

• takes us on a journey, sharing her childhood censorship of tears to the relief, release and catharsis she felt delivering her beautiful daughter, Sarah. The day I cried in public again.Tears are not a sign of weakness. They are cathartic, and they heal. I dare you not to be moved by this!

• has written this article for the collaboration. I’m bearing witness to all she has to go through. I see you, you don’t need to hide from us! We see you, you’re not alone. All the Tears I Can Not Cry and All The Pain You Will Not See. I'm allergic to my tears - I can't cry. I've become excellent at hiding my pain. But why should we hide it? Why shouldn't we allow people to see our suffering? Ask them to face our disabilities?

• Thank you. Conquering the Battle With My Tears. A Story About Culture & Healing. An eloquent, vulnerable, yet fiercely brave journey of your tears. The words ‘Ancestral pact’ are powerful.

  My earliest memories are filled with many stifled tears culled from a multitude of fearful moments and physical or emotional pain. They floated around inside me like scarred over wounds that became imperceptible through the years. My resilience eventually outshining them.

THANK YOU TO EVERYONE INVOLVED AND CONTRIBUTORS!

I hope to share the team’s thoughts and specific highlights on September 30th/soon after.

High-stress, exhausted tears are being shed right now! Thankfully, I can tap into all this empathy! xo

Subscribe now