Carer Mentor: Empathy & Inspiration: Letters from a Caregiver

"Nothing and Everything Will Prepare You for This Moment" By Brittany Carroll

Victoria — Thu, 16 Apr 2026 15:00:49 GMT

Hello! If you’re new to Carer Mentor, welcome! Thank you for being here!

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

Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

There are two previous seasons of Twenty-One Letters.

This Spring Season so far

Today’s ‘Letter from a Caregiver’ is by

I met Brittany last year, when she started writing on this platform. I felt a resonance with the big pivot she’s made to care for her father. She’s also educated me about ‘land loss’. I recommend learning more about Brittany and her family through these two articles:

My Career Trained Me for Global Crisis. Then My World Collapsed at Home. This is the first post from Life Bee Lifin’—a space I never thought I’d have to create. But life flipped, and here I am, telling the story I needed but couldn’t find.
My Father Got Sick and History Got Loud. Caregiving collapses time. My father’s health made land loss urgent.

Many thanks to Brittany for writing this letter. I think it’s clear from the tempo of the letter how tough it’s been, and how much resilience, compassion and courage she’s instilling in her younger self.

Brittany Carroll, Washington, D.C., April 2026, to my younger self in 2024.

Author’s Bio: Brittany A. Carroll is a management professional and writer based in the Washington, D.C. area. A former U.S. diplomat, she now navigates the role of caregiver to her father following a life-altering health crisis—and writes about what that journey has taught her about responsibility, identity, faith, and the systems we rely on in moments of need. Through her Substack, Life Bee Lifin’, she explores the intersection of caregiving, legacy, and the unspoken realities of stepping into roles we never feel fully prepared for.

Dear Brittany,

He will say it as a joke, softly under his breath while heading out the front door with that witty smirk. Yet this time, his eyes will not squint—and you will know he means it. The weight of his words will be too heavy to hold.

It will be almost two years since you moved into your house—the one you bought after returning from your tour in Iraq. And you will call the first man who ever loved you through his actions to help you make it feel like home. For months, he will do everything—install the blinds, mount the TVs, hang the curtains, install the shower rods, assemble the furniture.

Before your bedframe even arrives, he will be your very first guest. The two of you will sleep, squished together, on that green couch in the living room—the same couch where he will one day spend most of his days after his rehab discharges.

You will be so full of ideas and initiatives—not just for your nuclear family, but for your extended family too. The ambition that carries you through some of the biggest operations in the world will spill over into your personal life.

But I need you to brace yourself.

Because you will need that experience and that expertise for the greatest grief you will ever feel. You will not think about what he uttered under his breath at that door until one year from now.

Your strong, capable father—the one who drops you off at every sports practice, every viola lesson, the one who picked you up from your international trips around the world—your executor of dreams, Mr. Fix-It, jack-of-all-trades—will need you the most a year from now. And you will see another side of him that you are not prepared for. One that will shatter the images and memories you’ve always held.

I need you to know that you will be forced to take on a title you thought would first begin with your brother.

But it will begin with Daddy.

Caretaker.

I need you to know that your training will serve you well with the administrative aspects. It will not prepare you for the grief you will feel watching your dad almost leave this earth.

Remember the relief you felt getting on that last helicopter out of Iraq to return home?

This experience will make you want to go back.

Yes—you would actually rather return to Iraq.

You will lose count of the days you’ve cried. You will pray and sob yourself to sleep. You will start off strong—organized, persistent—but at some point, you will reach an exhaustion that no amount of sleep can fix.

The Type A in you will clutch her pearls if she sees your office.

It will be a complete mess.

You will not put your Christmas décor up until April.

You will stick to a diet—and then find yourself in a Wendy’s drive-thru or grabbing ice cream just to cope.

I need you to know:

It does not have to be perfect.

It is okay for it all to fall apart.

Ask for help immediately.

Do not feel bad for saying you are drowning.

And understand this—resilience may look like doing absolutely nothing.

You will be thrust into this caregiver role so abruptly, but you have the experience and training to execute, advocate, and protect the only man in this world who has loved you with everything he has.

He will need you a year from now.

You have always had that fight in you. Be mindful of your tone—but fight.

It will serve both you and him well.

You will not think about what he said again until his first week in the ICU.

“Who knows… I may not be here.”

I need you to understand that God makes no mistakes—and nothing you experience in life will be a coincidence.

There will be a reason you feel compelled to come home and take a D.C. job after Iraq.

There will be a reason you leave that first job after six months and take another that allows you to travel the world for two years.

It will not be a coincidence that on nearly every work trip, you reconnect with someone from your past.

That will be your farewell tour.

It will not be a coincidence that you return home just in time from a two-week trip to Korea to witness your daddy’s health decline.

It will be the Holy Spirit that tells you to go see him a day earlier.

It will be that same Spirit that has always guided you—to leave early, to apply, to pivot, to trust the unknown.

And that quiet tug you have been feeling—to leave the Foreign Service—will come to fruition.

You will resign with your dignity intact.

You will step into a new role in the nation’s capital so you can support the family that supported your dreams.

It will not be easy.

It will be filled with difficult conversations.

But it will teach you grace, mercy, and favor.

You will know God in a way you have never known Him before.

And the people you least expect will show up for you—and carry you through one of the hardest storms of your life.

You thought China during COVID was a storm.

This will rock you to your core.

I need you to be okay with not accomplishing all ten things on your to-do list.

One thing is enough.

I need you to be okay with holding your boundaries even when they are misunderstood.

They will protect your peace.

You will not have a manual for this.

You will feel unprepared.

But you are ready.

You have the experience and resilience to weather turbulent storms.

Take care of yourself.

You will need that discipline when this storm arrives—because the stress will settle in your body.

Keep going to therapy.

Go to the chiropractor.

Watch what you eat.

Keep your body moving.

You will find love before this storm.

And you will have to let it go in the middle of it.

You deserve a partnership that understands the weight of your calling—one that helps carry it.

But alignment matters.

Without it, your cry for help will be misunderstood as a complaint.

Let it go.

Your discernment will sharpen.

And in caring for your father, you will finally understand what love truly looks like.

It will change everything.

You will no longer crave perfectly curated photos or timelines.

You will crave a man who prays for you in the middle of the night when your back is against the wall.

A man who sees you and knows when to step in.

A man who asks, “What can I take off your plate?”

You will no longer chase timing.

Because alignment is better than the cost of choosing wrong.

You will be encouraged to stay silent about the hard, messy parts of life.

I am encouraging you to be brave.

Speak truth.

Even when it is uncomfortable.

You will not be emotionally prepared for any of this.

But you will be mentally and physically equipped.

And that is enough.

As the saying goes—

“Life Be Lifin.’

And still—you will show up.

In a couple of sentences, describe one thing you do to move through fear or uncertainty during caregiving.

I always pray when I’m uncertain. Caregiving is no different. Then I take a step back to fully understand the situation, problem, or conflict in its entirety. It’s easy to react, but I’ve learned it’s better to move strategically, even when it comes to matters of the heart.

2. Thinking of someone you admire or respect, name three of their standout qualities.

There are honestly too many to name, but I’ve been incredibly blessed with a circle of friends who have known me for a long time. When I ask for help, they don’t ask questions, they ask for the deadline. That kind of support comes from cultivating deep, long term relationships. If I had to name three qualities, they are observant, willing to help, and action oriented instead of reactive or complaint driven.

3. What’s one quote, movie, or book that’s inspired you?

I recently read The Heaven & Earth Grocery Store by James McBride, and it’s been a long time since a book made me get out of bed in the middle of the night just to keep reading. The storytelling is layered, rich, and deeply compelling. As I step into the literary world to write my first book, it has inspired me to sharpen my craft and write something just as hard to put down.

Prompt for discussion:

What’s a role or responsibility you stepped into before you felt ready—and how did it change you?

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

Subscribe now

"The Love Test" by Sally Cave

Victoria — Thu, 09 Apr 2026 05:01:24 GMT

Hello! If you’re new to Carer Mentor, welcome! Thank you for being here!

Letters from a Caregiver.

There are two previous seasons of Twenty-One Letters.

This Spring Season so far

Today’s ‘Letter from a Caregiver’ is by Sally Cave

I connected with Sally in late 2025. She was writing Substack notes about caring for her father, who had Alzheimer’s, here in the UK. In early January, when circumstances seemed particularly difficult, I reached out to see if I could offer some comfort or practical insights through a call.

My heart went out to her and her family, because I know first-hand how fraught hospitalisations can be, especially when your parent can’t advocate for themselves. Unpaid carers (the label we’re afforded in the UK) are not naturally included in discussions about the “pathways of care”1

My heartfelt condolences and warm wishes go out to Sally and her family for the recent loss of her father.

Thank you, Sally, for choosing to write this letter and agreeing to publish it.

Author’s Bio: Sally Cave was born and raised in the UK but has spent most of her adult life in Mexico. She lives with her family and divides her time between both countries. She developed her passion for writing when she first moved to Mexico. You can follow her on Substack where she writes about everything from caregiving to faith, the supernatural and a whole lot more. Coming soon, her debut novel: Change of Heart.

The Love Test

Dear Sally,

There are so many things I want to tell you. There are so many things I want to say, but for this letter, I will focus on one. During this chapter of your life, the most important thing you must learn is to extend yourself grace. You are too hard on yourself. You expect too much of yourself. You judge yourself too harshly. Be kind. Let me say that again. Be kind.

You may not see it right now. In fact, I know you don’t. It’s not even on your radar. There will come a time when you stand up for Dad in ways you never imagined. You will be there for Dad in ways you never thought possible. You will become his hands and feet. You will become his memory bank. You will become his cook and his cleaner.

He will cheer you on from his ‘perch,’ while you run the duster over the coffee table in the lounge. As you hoover the carpet around his feet, he will offer a thoughtful, ‘Well done.’ He will lift his feet and offer his help. He will try to be useful even though he no longer remembers how.

You will dress him. You will bathe him. You will wash him and clean him up. You will shave him and trim his eyebrows. In between these caregiving moments, you will share a laugh, give him a hug and a kiss, and tell him you love him. You will watch as he forgets how to hold a fork. You will watch as he ignores his knife. You will stand by as he forgets how to drink from a glass. It will get to a point when you cut up his food and feed him.

You will explain to him things about the world as if he were a newborn, without that sparkle of newborn wonder in his eyes. You will calm him down when anxiety threatens. When crisis strikes, you will have the words that bring him peace. You will tuck him into bed at night. You will tell him it’s daytime when he believes it is night. You will guide him back to bed when he thinks it is daytime. When infection hits, you will guide him up off the floor. You will show him how to get on his feet again. Sometimes it will take him an hour. Sometimes you will find him on the floor at 3 am. You will beat yourself up because you didn’t hear him fall.

Don’t do that. Remember who you are. You are his daughter. You are the apple of his eye, and you are trying your best. Remember that, Sally.

You will watch him unravel and will mourn the passing of each layer. You will remain strong for both of you until he goes…and then you will break.

Then you will wonder what happens next. The focus on his needs, wants to go somewhere. It needs to go somewhere, but where does it go? Who should it go to?

You will feel tired, so tired that you go beyond tiredness. You will feel like you have aged 10 years in 21 months. But as you age on the outside, your heart and your soul will mature like fine wine. You will learn lessons about love and sacrifice because you embody it. You become grateful for it. You even enjoy it.

The sacrifice, the tiredness, the worry, the anguish, the grief are all worth it, because you loved him with your whole heart. You served him and honoured him. You were a gift to him. And this was his gift to you.

It’s hard to imagine, I know.

We’ve all heard it said a thousand times: “Live your best life.” We are encouraged to go out there and seize life by the horns. Mum and Dad certainly did that with you, Sally. They never held you back. Every time you grabbed your backpack and disappeared into the unknown halfway across the world, they remained at home, waiting, trusting you would be OK. There were no mobile phones, only faxes, and those would only be sent once in a blue moon. How exciting it was sitting in a makeshift shack in Guatemala with 5 phone cabins and a fax machine whirring away, until a long-handwritten letter spewed out, sent from Mum and Dad’s own machine. Those were your ‘Indiana’ days, where you roamed and explored quite unconcerned about your own safety.

They never held you back.

When you moved to Mexico, they were sad, but they never stopped you. When you remained in Mexico, they were sad, but they never stopped you. They encouraged you to go out there and live. And live you did!

Strangely enough, there are no sayings about walking away from your life to make another person’s life comfortable. No one talks about the joy of caregiving, the privilege that it is. No one talks about the gift of sacrifice.

Dad always told you not to return to the UK because of him, but how could you leave him rattling around in the house on his own? You couldn’t. You didn’t. And I am grateful you didn’t. I am proud of you, Sally. I’m proud of who you have become through this. You won’t become a great historical figure known for your contribution to mankind, but you will become great in your Father’s eyes for your contribution to one man.

And that is all that counts. Nothing else matters.

How we love is all that matters. It’s easy to love those who love us. It’s easy to love others when our lifestyle isn’t challenged, but what happens when we are faced with difficult decisions?

Do we love selflessly?
Or do we love conditionally?

Do we love like Him? Do we love sacrificially with a love that only comes from Heaven, pouring down from wounds on hands and feet into open hearts?

Or do we love for personal gain?
Do we only love when it’s easy?

The love test takes place at 3 am. It takes place when someone’s life depends on yours. It takes place when you have to be there, no matter what. It takes place when you cancel your plans over and over again. It takes place when your life is placed on hold. That is when your love is truly tried and tested.

Will it pass the test? I’m here to tell you that it will. I’m here to tell you that it did.

So next time your mind floods with accusations and doubts over the level of care you gave him, remember this: it’s not about whether your care met professional standards, it’s not about having the right qualifications or training, it’s about whether your heart passed the love test.

There was a moment when you doubted yourself. There was a moment when the system questioned your integrity. ‘Safeguarding,’ they called it. You, like a newborn to the NHS system of frailty care, had no idea that you would come under scrutiny, that they would ‘investigate’ you. It wasn’t until a lady from Adult Social Care stopped you in the hospital corridor that she mentioned a case had been opened.

‘Nasty bedsore,’ she said. ‘Possible neglect,’ she said.

Almost in the same breath, she said, ‘Don’t worry. The case has been closed. We realised you were out of your depth.’

Her words will pierce. Just like that, she will qualify you as unfit. Just like that, they will oblige you to put him into a home. No one from the outside came and encouraged you in the months prior. The system did not reach out and offer help. That help is only offered if it is paid for. You realised quickly that the system left carers alone until they came under scrutiny. And while you will feel relieved that the system reviewed the records and saw how many times you called the GP, those words will continue to sting. They will make you feel you failed him somehow.

Know this. You didn’t fail him. You loved him. By the end, you were all he knew. And he was safe with you.

And now you find yourself in this strange place. You can go out and live your life, but you are just not ready. Take it slow. Take time to heal. Rest, recover, recuperate. And when the time comes, go out there and love again.

Love is the only qualification that counts.

Love always,

Sally

1. Moving through fear or uncertainty

Prayer never fails. I often focus on and personalise a key scripture to settle my mind. 2 Timothy 1:7 is ideal for when uncertainty bites: For God did not give me a spirit of fear, but of power, love and soundness of mind. I also sing my heart out. Songs like ‘All Authority’ by Tasha Cobbs chase darkness and fear away.

2. Three qualities I admire

I tend to admire people with the following standout qualities: the ability to remain calm in a crisis; the ability not to take offence, and the ability to stand one’s ground lovingly. The first quality forms the foundation for the other two. If a person is able to remain calm, then offence doesn’t come so easily, and being influenced by others’ opinions is less likely. I admire people who can steer through crises and tense situations while remaining true to themselves and their convictions.

3. Quote / book / film that’s inspired you

This is a really tough one, principally because I have many books that have inspired me. Even though the list is long, I always come back to The Catcher in the Rye. Why? I am not entirely sure. There is something about experiencing Holden’s mental health crisis firsthand that I find so jarring and yet so relatable. I believe we all have an element of Holden inside of us. We either accept him or we struggle with him. Whatever it is, I think Salinger does a fine job of tapping into an element of the human condition through his main character.

Prompt for discussion:

Describe a time in your life when you experienced a love test. In other words, when have you had to show someone the type of love as described in this post?

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

Subscribe now

An article I wrote which includes the Discharge to Assess operational process that’s employed by hospitals ‘Hospitals: a Carer’s mantra. Why?’ Actionable insights and Ideas/tips. Sharing the realities of hospitalisation.

"My caregiving journey is a family healing journey" By Viva Mogi

Victoria — Thu, 02 Apr 2026 07:57:32 GMT

Hello! If you’re new to Carer Mentor, welcome! Thank you for being here.

Letters from a Caregiver.

There are two previous seasons of Twenty-One Letters.

This Spring Season so far

Today’s ‘Letter from a Caregiver’ is by

I found this article by Viva last year and was inspired:

The Dream Wedding. On love, caregiving, and learning to choose joy without guilt.

“Our parents were loving and understanding when we told them we wanted to elope. That subtle distinction — making it about us, not all of us — meant everything. After years of caregiving for my mom, my dad told me, simply, to do what makes me happy. His blessing held a thousand unspoken lessons: he wanted us to live freely, joyfully, and without guilt. That’s also how I’ve learned to approach caregiving and it was time for me to live that way for myself.”

Viva has a beautiful way of articulating complex concepts about culture and caregiving, making them feel more accessible and relatable. While my view through the kaleidoscope of culture may not be exactly the same, the colours are very familiar.

Thank you for sharing your family’s story with us, Viva.

Author’s Bio: Viva Mogi is a policy strategist and community organizer based in California. Raised by Japanese immigrants, she is a caregiver to her mother living with Alzheimer’s — and writes about what that journey has taught her about culture, identity, and the systems we navigate along the way. She believes that better policy starts with stories like hers, and that the more honestly we share them, the more human our systems can become on her Substack, Care is a Strategy.

My caregiving journey is a family healing journey

Dear Viva,

It’s been a few years since Mom was diagnosed with Alzheimer’s. You’re still figuring things out — living away from home but spending more and more time thinking about coming back. About what it would mean. What it would cost. What it might give you.

There is a moment that will make the weight of that choice land differently. Mom gets shingles, and her case is so severe — sores in her mouth, close to her eyes — that she has to be hospitalized. Then placed in a short-term nursing facility until she’s strong enough to come home. So you take a week off work. Because just days in the hospital, she can no longer walk on her own. If she can walk, she can go home. But the staff here speak only English, and she refuses to engage with the physical therapist. So you show up every single day for five days. You bring food she likes. You sit with her. You encourage her, gently, firmly, patiently. And slowly, she makes progress.

She gets so weak so quickly now, and it is heartbreaking. Dad is exhausted — rightfully so — but no one else is there for any real stretch of time. An hour here and there. Not enough. You feel it leaving every time, that pull in your chest. Even when you go back home, there is no rest — just the heaviness of distance. You are beginning to understand what it means to care from afar, and the choice of whether to move back is pressing on you in a way that no longer feels abstract.

That moment — those five days — is the one where you will see it clearly: this is what she needs. And this might be what you’re stepping into.

You and Mom have always had something rare. A closeness that doesn’t come easily — especially between an Asian American daughter and an immigrant mother carrying the weight of an entire culture’s expectations on her shoulders. And yours. You know what’s expected of a good Asian daughter. You’ve always known. The success, the marriage, the children. The caregiving, when that time comes. You are not the exception to any of it.

“Isn’t it so wonderful you had at least one daughter?”

You will hear this from parents’ friends — said casually, warmly even — throughout the caregiving years. And you will understand, in a way you never quite had words for before, that this was never just an obligation or an expectation. For some, it is the reason you were born. Hold that. Sit with it. Let yourself feel whatever it makes you feel.

Right now, you’re in your early thirties and trying to figure out how to date — in this impossible era of apps and algorithms — while knowing you might want to move home to care for mom. How do you explain that on a third date? You’ve started wondering if it’s even worth trying. The cultural and biological clock is still ticking, and unlike the men you meet, you feel every second of it.

I want you to know: those feelings are real. The exhaustion of carrying cultural expectation and grief and logistical complexity all at once — that is real. But there’s something you can’t see yet that I want to tell you.

You are about to learn things about yourself, your family, and your culture that you could never have learned any other way.

Caregiving in America means talking about money. It means sitting across from your parents — people who hid the will like a family secret — and asking them to be your teammates instead of just your parents. It means your father will say, “Just deal with it when I’m gone.” He will say this more than once. And it will frustrate you deeply, because you will know what “just deal with it” actually costs. Everything takes six months. The government systems take six months. Convincing your parents to share information takes six months. Plan for that. Give yourself grace inside that timeline.

With a family like ours, where money is never discussed, you will often feel like a bank account. It will weigh on you. It will make you deeply sad — that all the work you did to build financial freedom pulls you back into something familiar and painful. Two hardworking immigrant parents who had some retirement, but not enough for what caregiving truly asks. You will carry that too.

Respecting elders and setting boundaries are not opposites. You are about to live the proof of that.

Boundaries with Asian parents — yes, it will absolutely be a thing. Hard-won and worth every uncomfortable conversation. You will learn to hold both love and firmness in the same hands. Your relationship with your parents will become one of the most important and complex of your life. It will ask everything of you. It will also give back in ways you didn’t know you needed.

You are not alone in this. Many cultures carry this quietly. And there will be something unexpected in hiring Japanese-speaking caregivers — in surrounding your mother with familiar language and familiar things. It will bring you back to your own childhood. Saturday Japanese school. The strict rules and gruelling hours you resented then. But here, in these caregiving years, those lessons resurface as gifts. You will speak the language with her. You will feel the thread of responsibility that was placed on you even as a child — and you will begin to see it differently. Not as a burden you were handed, but as something that shaped you into the person who shows up. Who doesn’t run. Who stays.

Is it unfair? Yes. Did you ever run away? No. That is all you. Rather than flattening your experience into “caregiving is hard,” you’ll learn the full complexity of your story. And that story has a lot of value — for you, and for others who need to hear it.

The caregiving journey will crack open old wounds — generational ones, not just your own. You will find yourself in the middle of something bigger than you planned for. Trauma surfaces in unexpected moments. But each difficult incident will be a small act of healing, for your family line and for yourself.

There will be moments you want to walk away from all of it. And there will be moments when a friend says, "I could never do what you do," and instead of feeling seen, you feel the full weight of what you're carrying. It's a lot. It is a lot. But rather than disappearing into that weight or feeling sorry for yourself — and you could, and no one would blame you — you found something that helped you keep going. A network. People who understood. That's what sustains us. Not toughness. Not obligation alone. Community.

Keep the therapist — and you do. Keep going to the support groups. Keep sharing your story. That is how caregiving becomes something we can hold with care, rather than something that breaks us. Breaking cycles isn’t what you signed up for. But it will heal you.

My caregiving journey is a family healing journey.

And about the life you want — the partner, the family, the career — all of it: it doesn’t disappear. It doesn’t get canceled by caregiving. It happens alongside it, slowly and in pieces, shaped differently than you imagined.

Everything you are doing, you are doing amazingly. Be so proud of yourself. Give yourself so much love — because anxiety will take over, and love is how you ease its grip on the uncertainty. The only thing I wish I could reach back and say, the one real thing:

“Move home as soon as you can. Not because it will be easy. But because the life you want is already taking shape there, quietly, without your knowing.”

He is there. Minutes from mom and dad’s house. He will love you fully — all of you, including the parts that are tired and conflicted and fiercely, stubbornly devoted to your family. He will not see the caregiving as a complication. He will see you.

Life will not go as planned. It never does. But it will happen — the partner, the family, the work that matters — slowly enough that you can carry it all.

In the end, I just wanted to see you happier sooner. But it’s okay. The love and happiness that come will be cherished all the more for arriving when they did. More to be grateful for. It was all meant to be this way.

Thank you for showing up. For not hiding from what was expected — for embracing it, in your own way, in your own style. With commitment, love, and so much thought. You are still you through all of it. Through the chaos, the grief, the hard conversations, the long drives home.

You're not strong because you're a good Asian daughter. You're not strong because culture wrote that role for you before you could choose it. Every step you've taken, every hard thing you've walked through — that's the muscle you built. Slowly, without always knowing it. Not because you were born into a script, but because every day you decided to show up.

Care isn’t something we simply have. It’s something we build — quietly, daily, imperfectly. That is what caregiving taught you. And that belongs to you.

I am proud of you. Be proud of yourself.

With so much love and hard-earned patience,

Viva

1. Moving through fear or uncertainty

I remind myself that 80% of caregiving is unknown. We can’t truly predict what comes next — and even when we’ve done everything we can to prepare, it still might not be enough. So I take a breath. Literally. I believe deeply in calming the nervous system before engaging with the fear, and it starts there — with a deep breath. And more often than not, I come right back to that same truth: I’ve done what I can. That has to be enough for today.

2. Three qualities I admire

Listening — really listening, not just waiting to respond. Being kind to yourself and to others, in equal measure. And starting the day by telling yourself, and the people around you, that today is going to be a good day. It sounds simple. It isn’t.

3. Quote / book / film that’s inspired you

Trevor Noah’s Born a Crime. It’s genuinely funny — and underneath the humor is something that stays with you. He wasn’t born a criminal. He was told he was, by communities and systems designed to make him smaller. That distinction matters. When you can see how stories get assigned to people rather than chosen by them, it changes how you move through the world. It makes you more human to others — and, I think, to yourself. Perhaps then, we can truly see people shine the way they were always meant to.

Prompt for discussion:

“What’s one thing caregiving has taught you about yourself that you couldn’t have learned any other way? Share in the comments — I’d love to hear your story.”

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

Subscribe now

Three Seasons of 'Letters from a Caregiver'

Victoria — Tue, 24 Mar 2026 08:40:00 GMT

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 our ‘Letters from a Caregiver’ Collaboration, a caregiver-author offers wisdom, compassion, and hope to their younger self.

No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

Uncover the wisdom and insights of the previous 21 letters.

The Autumn 2025 Letters from a Caregiver Series:

The Winter Season 2025/6

The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria
‘You Each Deserve Your Own Life’ By
‘Relearning Hope In A Time Of Darkeness’ By Victoria
‘Having Compassion for Your Earlier Self’ By
“Grasshopper, you are the expert” By
‘You Published Your Book! And Now What?’ By
‘The Light We Carry’ By Victoria
‘It’s Not Her, It’s The Disease’ By
‘The Gift Of Self-Compassion For The Caregiver’, By
“When the Waves Keep Coming: Trust Yourself” By
“The Hardest Decision You Ever Made Was the Right One” By

The Spring Season 2026

This Spring Season so far

If you’re new to Carer Mentor: Empathy and Inspiration, start with this article:

Or if you’re a caregiver seeking some practical tips and help with caregiving itself, check out this rolling list of ideas:

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

Subscribe now

"Grace, belatedly..…Becoming the daughter she needed" By Sarah Bain

Victoria — Thu, 12 Mar 2026 09:58:19 GMT

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

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.

Two new essential articles:

I recommend using the quick-start navigation guide to explore the website.
Downloadable essentials, a FREE 🎁 for you, What You Need to Know Before an Unexpected Hospital Trip. So you can benefit from my numerous ER trips.

You’re not alone

Letters from a Caregiver.

There are two previous seasons of Twenty-One Letters.

This Spring Season so far

“Misunderstood, and everyone has an opinion,” By Victoria
“What It Takes To Embrace the Life He Has “ By
“The Long Road Home for a Different Kind of Future” By Haley Haddow

Today’s ‘Letter from a Caregiver’ is by Sarah Bain

Thank you, Sarah, for sharing your reflections so openly with us.

As Sarah and I prepared this piece for publication, we exchanged thoughts on how writing to our younger selves enables us to dig deeper into the motivations behind what drives/drove our caregiving. When we’re in the swirl of unpredictable caregiving, we can’t always see how past threads have been woven together to influence our choices.

“Writing this letter was more cathartic than I expected, and I really felt as if I tapped into a part of myself that still needed to be heard. I needed to offer myself more grace and be less hard on myself, and I think this letter has helped me do that.” - Sarah Bain

I recommend reading these other articles by Sarah:

Author’s Bio: Sarah Bain is a writer and thanatology student living in Spokane, Washington with her dog, two cats, and husband. She walks four to seven miles a day, loves a good nap, and thinks often about normalizing conversations around death, dying, and grief. She is both an orphan and a mother of four — one who left too soon, and three who still walk this planet. You can follow her on Substack at A Container For My Thoughts and on Instagram, where she's still figuring out what she's actually writing about.

Grace, Belatedly…Becoming the daughter she needed

Dear past Sarah,

I remember the day and month so well. On January 7, 2024, the call came after 10:30 pm from your mother’s cell phone. Only it wasn’t your mother who was calling. It was her friend, and as soon as you heard her voice you knew right away that something was wrong. You’ve felt that before in the way that a person responds on the other end of the phone when you say hello—the way that the inflection of her voice makes you slide down against the wall and fall to the floor because something is so very wrong.

Sarah, it’s Pat. And it’s not good.

That time and space between the 10:30 p.m. call and 10:30 a.m. the next morning when you walked into the hospital room, 1,200 miles from where you live, are blurry. But look at the strength you had in making the phone calls to your brothers in the middle of the night, packing your clothes and your work laptop, buying the one-way plane ticket and flying from Washington state to Southern California. Saying goodbye to your husband, and your fourth child, the only one left at home still who was a senior in high school. You didn’t know on that January day that you’d miss so much of his senior year, and it’s probably better that you didn’t know.

Twelve hours between departure and arrival. So much can change in twelve hours. So much can change with a moment’s notice. But you already know all this. That’s why you are so good with how quickly things can change. Because they can change, and they do change.

I still see that version of you in 2024. I want you to know that I see you, and I see the exhaustion, the fear, the worry, and the inability to self-regulate. I want to tell you that no matter how overwhelmed you are, everything you are doing makes a difference. No matter how complicated the relationship is with your mother, no matter how fraught it is with angst and worry, you will do and have done everything in your power to make her final months on this earth as beautiful as possible.

When you repeated the phrase to yourself over and over again silently in your head, I heard you.

Even though my mother could not be the kind of mother I needed her to be, I can be the kind of daughter she needs me to be right now.

I know that you repeated that phrase on a daily basis, like a mantra, to remind you to stay present, to keep showing up, to be there for her no matter how terrified she was of the journey.

Sarah, I wish I could tell you to believe in yourself in the way that others who love you believe in you. Because you hold a kind of strength and resilience that many others don’t have. This period of eight months of caring for your mother will be some of the most exhausting months of your life. You will lose so much of yourself in the process, but I promise that you will eventually return to yourself again.

Flying back and forth from Washington to California on a monthly basis while still working remotely and trying to be present for your son’s senior year of high school is incredibly challenging. Still, you will continue to do it.

It will not be lost on you that somehow your mother’s diagnosis of pancreatic cancer will be a gift of sorts because as soon as the doctor tells your family she has six to twelve months, the first thing you think is: Thank god that I will be able to say goodbye. You will remember that you didn’t get to say goodbye to your father or your daughter when they died—your father when you were five years old and your daughter at birth. That feeling is something that will stay with you for the rest of your life. So being able to say goodbye to your mother does feel like some kind of gift even if the cost of it is a kind of caregiver’s exhaustion that is impossible to describe. Only your bones can understand.

I want to tell you that the exhaustion you feel will eventually go away. It will take time, a lot of time to rest and recover, and you will lose things you didn’t expect to lose along the way: your uterus, your job, your dog, for starters. You will find yourself changed in ways that you can’t even really describe to anyone let alone to yourself. The you that loved to go out with friends and to show up at parties will disappear—and I don’t know if she’ll return or not, but that’s okay. I think that version of you was actually someone just trying so often to be the kind of person you thought your mother wanted you to be. You don’t have to be anyone you don’t want to be anymore.

I remember this period of time for you because I am your future memory of things you are already starting to forget in your past. Except that I don’t really want you to forget some of the things you’d rather not remember. When we forget the past, we forget the resilience and strength we have grown over time. And you have grown.

Here is the thing about those eight months: despite the difficulty of all of the roles you had to take on, you did it because you knew the alternative was worse. You’ve lived the experience of being unable to say goodbye—to your father when you were five, to your daughter at birth. You know what it is to lose someone without ever getting to say I’m sorry I couldn’t save you, because you know as a mother that saving your child is the thing you would do above all else.

You will say goodbye to your mother—you will crawl into bed with her and hold her as she dies. You will tell her that you love her. And you will continue to love others without ever knowing who will die next.

And that’s okay. Because despite the uncertainty, despite the fact that someone you love will die, and despite the fact that it hurts more than anything when they go, you will rise up again in the morning to learn how to love over and over again for the rest of your life.

Until your time has come.

By Sarah Bain

Three Rapid Questions

Describe one thing you do to move through fear or uncertainty during caregiving.
Caregiving is exhausting and all-consuming, so during times of uncertainty, I find myself closing my eyes and breathing deeply. Three breaths — inhaling, holding, releasing. And reminding myself that this, too, is temporary. Everything is. When I open my eyes again, I look for the beauty and the light, because it's always there, especially in the darkness.
Thinking of someone you admire/respect, name three of their standout qualities/characteristics
I admire so many different people that it’s hard to imagine just one person, but the things I admire the most in someone are generally things that I am striving to be better at or have more of. So, I love incredibly patient people because I can be known to be very impatient. I always wish for more patience. I also love people who are humble. Humble curiosity is something I strive for each day in everything I do. Finally, I love really smart people who teach me something about the world. I surround myself with persons smarter than me so I can continue to learn. I’m so lucky to be able to have these people in my life.
What’s one quote/movie/book that’s inspired you?
I recently read Raising Hare, by Chloe Dalton and it’s one of the most beautiful meditations on life that I have read in a really long time. I have bought loaned out my book multiple times to whoever will read it.
“She has taught me patience. And as someone who has made their living through words, she has made me consider the dignity and persuasiveness of silence.”
― Chloe Dalton, from Raising Hare: A Memoir

Prompt for discussion:

Writing this letter was more cathartic than I expected, and I really felt as if I tapped into a part of myself that still needed to be heard. I needed to offer myself more grace and be less hard on myself, and I think this letter has helped me do that. So I’ll ask you the same: What do you need to forgive yourself for?

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

Subscribe now

“The Long Road Home for a Different Kind of Future” By Haley Haddow

Victoria — Thu, 05 Mar 2026 08:53:44 GMT

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

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.

Every caregiver’s experience is given space to breathe and gently connect. Empathy and inspiration unfold, offered and shared. No one stands alone here.

Letters from a Caregiver.

There are two previous seasons of Twenty-Two Letters.

This Spring Season so far

“Misunderstood, and everyone has an opinion,” By Victoria
“What It Takes To Embrace the Life He Has “ By

Today’s letter is by Haley Haddow

I met Haley around November, 2025 and was drawn to her writing. She manages to capture the deeper essence of a moment, the flow of actions, and shifting emotions. Perhaps the patience and creativity she used as an award-winning glass artist have allowed her to bottle her magic onto the page.

It’s why I love the words she’s used in her own author’s bio: “she shares her own and others’ stories to illuminate what so often goes unseen.”

While our rollercoasters are different, I feel a deep resonance with the last paragraphs of her letter. Some decisions are made, not because of choosing between options, but because of a “fierce clarity.”

Thank you, Haley, for sharing your ‘path of becoming’.

I recommend reading these other articles by Haley:

“My Fairy Godmother Called Today. So here I am, and here I start”
“The Other Side of Caring “You failed him. And you’ve failed us.””
And one of my favourites is “The Sunflower Lanyard Max had been seen. He had been capable. He had been useful and ...just simply included.” because she’s shared such a great moment, I guffawed, and like Haley, I had brain-whiplash, mentally checking “what just happened!?!”

Author’s Bio: In her early twenties, Haley followed her passion for adventure and travel by living as an expat in the United Arab Emirates. Later, returning married and expecting her first child, she established a glass art studio. She relocated to the UK when her second child was diagnosed with autism and is now his full-time carer, placing her career as a glass artist on hold. She has come to understand that while people often see strength in caregivers, they rarely see the interior world. Through “Thousands of Us”, she shares her own and others’ stories to illuminate what so often goes unseen.

“The Long Road Home for a Different Kind of Future”

Dear Haley of January 2013

Its thirteen years in the future, and I want you to know.

You did it. All by yourself.

And despite everything, and there’s been a lot.. you were right.

Your intuition spoke and you listened. It was the right choice. It was the only choice.

Thirteen years ago, your seven-year-old baby girl was sitting in the backseat of your cream SUV, the engine humming softly, idling under the carport. Waiting.

You remember it like it was yesterday as it resides quietly in the folds of your memories.

Her little face was so pale, eyes wide with confusion. Despite your best efforts to explain, an aura of bewilderment clung to her. Too young to fully absorb events, but old enough to know the only life she’d ever lived was over. Her childhood of playing in perfectly manicured hotel gardens and poolside parties was no more.

You knew her heart was broken leaving her best friend, Jaimie, only three days younger. She broke yours telling you, “she’s my bestest best friend, Mummy.”

And Max, sat next to his sister, his huge brown eyes gazing innocently out of the window, unaware of his disability and its impact on the family.

You think of the preceding year, the truths that arrived quietly, settling in your bones with a quiet knowing. They sat beside you at the edge of the bed at 3 am, or while brushing your teeth, until that morning when you looked in the mirror and were finally brave enough to say them out loud:

Something is wrong.

My child needs more. Much more.

The delay in speech, the behaviour, the meltdowns.

You breathed out. You processed. You took control.

Bravely.

And so it began.

There were countless hours lost in research online, sitting at the dining room table in search of a solution to something you barely grasped. Aware you were in uncharted territory, unaware that the journey was less about finding an answer and more about learning to navigate the unknown.

Then, there was a breakthrough.

A specialist center in the city.

You signed up to a six-month waiting list. When you got the call, you drove the three-hour round trip alone, across a stretch of endless thin grey ribbon of road through the desert, your eyes fixed ahead on the broken white lines. Occasionally you’d glance in the rearview mirror at your little man, so cute, so vulnerable, sitting in his car seat, his innocent face perfectly framed.

Week after week after week.

Your life became awash with reams of paperwork, a battery of questions on developmental history and behavioural observation tests.

And then.

You did not expect the word that followed to rearrange the architecture of your life.

Autism.

It did not arrive gently. It did not arrive as a whisper. It arrived in full detail within a forty-page final diagnosis report. Clinical, bound, definitive, and yet somehow still unable to capture the little boy you know, who is beautiful, sunshine, cheekiness and noise.

New terminology is introduced to you that in future will become your second language:

Challenging behaviour, significant problems with social interactions and communication, speech, language and occupational therapy.

You met with a friend over coffee. She looked at you and said, “I think you have to go home.”

The weight of her words echoed a truth you had already known.

You nodded with a quiet calm, and just like that, the decision was sealed.

You had to leave. There was no other way.

Three suitcases in the boot. Two children in the back. That was it. An expat life of eight years, three months, two days reduced to weight limits and zipped compartments.

In the distance, the prayer call rose across the morning air. After months of organizing, planning, justifying, and explaining, you finally let yourself feel it..the first pang of sadness. Yes, this is real.

You remember the leaving party clearly. Outside on the marina, everyone had lit Chinese lanterns, each making a wish for your son, holding light in their hands for his path, for your strength, for the unknown future. They fluttered and climbed into the darkest blue night sky above the Indian Ocean until they became small little beacons of light.. of hope.

What a journey.

But listen carefully, because you need to know what you couldn’t know then.

Do not allow doubt. Sadness, of course.. but there is a difference. Learn that difference. It will save you later.

Back home in the UK, the first months will be brutal. Like really.

You’ve done your research, gathered your paperwork, and been warned by friends to be battle-ready.

You hit the ground running…hard.

It will be a brutal reckoning. You have returned to a special education needs system that is overwhelmed, underfunded and understaffed. 4,000 miles away in the UAE your son was treated like an anomaly, a quirk, a freak, a deviation from the “norm”. Back home he is one of many.. the enormity of the irony will not escape you.

But listen, you are not weak for the times you cry in the shower, at the traffic lights, in the park, or at the kitchen sink. You are not failing when you are tired of being strong. And I know you are so tired.

After four months, you secure a school placement, a hard-won victory. You shake your head in disbelief when told how fast that is. They did not see the sleepless nights, the letters, the emails, the calls, the tenacity to never give up, even through hell. It feels less like a process and more like a siege. When you come up for air, you will be exhausted… and this is just the beginning.

But.

Kindness will find you, and not always where you expect it. You will learn that systems are frustrating, bureaucratic, and flawed…. but people, people can be extraordinary.

And you.

Yes, you will make mistakes. Some you will replay at night like courtroom evidence against yourself. Forgive yourself faster. Remember that you are the woman who stayed in the arena. No kidding Brene!

You will learn to advocate like you breathe and discover in yourself a relentless mode of resilience. You have already done so much with so little that one day you will realise you can do anything with nothing. Let that sink in.

You are not behind. You move forward every day even if you cannot see it. Have faith.

You cannot re-write your story, but you can honour it and tell it. One day someone else will stand where you are standing, and they will need proof that choosing the hard road, is still choosing well. The cost will be high. Higher than you could have ever imagined… but it is worth it.

In the early years, there will be days you grieve the life you had, the sacrifices you’ve had to make. Let yourself. There’s no timeline on your grief, you don’t have to be over this loss by now, or indeed the ones that follow.

Leaving was the right decision because it aligned with the truth and you could never have lived with yourself if you had stayed. You chose your son’s needs over your comfort, your plans, your imagined future. That is not failure. That is fierce clarity.

This was not just a move. This was a choosing, and ultimately a becoming. You are on the path to a version of yourself that is stronger and braver than you could ever realise. I am proud of what you have, and will continue to walk through.

Speak to yourself kindly. Be gentler with yourself than you think you deserve.

Keep going.

There are many more challenges ahead, and some you think…. might break you.

I am living proof that you will… and they didn’t.

Three Rapid Questions

Describe one thing you do to move through fear or uncertainty during caregiving.
When fear rises, I pause and take a breath. I break the immediate problem into small, manageable steps and focus only on what I can control. I remind myself how far I’ve already come, how many hurdles once felt insurmountable but weren’t. I try to actively anchor myself in the “what is” rather than spiralling into the “what if.” The present may be hard, but it is almost always more survivable than the imagined future, although it is hard to practice this “in the moment”.
Thinking of someone you admire/respect, name three of their standout qualities/characteristics
A former colleague comes to mind, someone who has been steadfast in their support of me over several years.
First, loyalty. Consistent and simply remaining “present.”
Second, empathy. Their own life looks very different from mine, yet they have always made space to understand my reality.
And third, generosity of spirit. They have shown interest in my wellbeing and my children’s on a level far beyond my expectation, exceeding familial bonds. My gratitude for their presence is immense. They have taught me that support does not have to be loud to be life-changing.
What’s one quote/movie/book that’s inspired you?
Nothing on the outside is more powerful than you.

Prompt for discussion:

Your child is now a young adult, vulnerable, requiring a high level of support, and likely to do so for the rest of their life. Statistically, it is highly likely they will outlive you. It is a truth that no one will ever care in quite the way you do, yet you must prepare to loosen your grip responsibly, lovingly, with a view to a long-term solution.
How do you navigate the fear of supported government care, the unpredictability, the lottery of “good” versus merely adequate (at best) or negligent, fuelled by horror stories in the news, while also recognising that you are human, ageing, and entitled to a life beyond constant caregiving?
How do you sit with that knowledge without being consumed by it?
I would love to hear how others are holding (handling?) the paradox… between protection and preparation.

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

Subscribe now

"What It Takes To Embrace the Life He Has " By Chris B

Victoria — Thu, 26 Feb 2026 09:40:42 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members! I’m Victoria.

If you’re new here, you can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

I’m on a mission to raise awareness of the struggles caregivers face today and the hidden crisis of caregiving. These days, caregiving is not confined to the emotional turmoil of hands-on care. Carers are the glue and communication bridge in fragmented healthcare systems. We’re a buffer and the translator of needs.

It's an extreme challenge—the acts of caregiving and orchestrating all the connecting elements. We are the orchestra, the sheet music, and all the instruments. We are the conductor, but we have no baton.

Equally essential to its mission, the Carer Mentor website publication offers heartfelt empathy for caregivers and serves as a hub for practical tools, resources, and expert insights. I seek out community, build collaborations, and curate anthologies so that we can network and offer mutual support.

Explore the anthologies, and you’ll find others. You’re not alone. The website is a portal to others and aims to build hope.

Letters from a Caregiver.

There are two previous seasons of Twenty-Two Letters.

This Spring Season so far

“Misunderstood, and everyone has an opinion,” By Victoria

Today’s letter is by Chris B

I met Chris in October 2025. I recommend reading his poems, e.g. Happy Hands, A Caregiver’s Poem and See, A Caregiver’s Poem…

Chris has a gift for communicating his experiences, his love for Bray Bray, and his wife, Melanie, through his poetry. It’s beautiful to see and read about his family, and his pickleball wins!

Chris builds community and easily engages with those he meets, whether it’s around caregiving or his gift for poetry, or both!

No caregiving experience is easy. Even when you see the big, beautiful smiles of Chris, Melanie and Bray Bray, I know the sleepless nights they have when Bray Bray’s been ill, or the struggle they’ve had getting the CPAP machine.

Thanks to Chris for sharing this letter to his younger self with us. He’s gifting us the magic that is Bray Bray, the vulnerable yet powerful mindset shift that he underwent and insights into how he approaches life today. (No spoilers here!)

Author’s Bio: Chris B. is an award-winning published poet, caregiver, and Dad to his son Brayden (Bray Bray). When he’s not writing, caregiving, or working, you can find Chris on the pickleball and beach volleyball courts of Long Island, NY, where he resides with his wife Melanie and Bray Bray. Chris is very active on Substack and invites you to follow along as he shares his life adventures as the working parent of a child with many needs, whose enduring smile lights up the world:

Bray Bray and Chris B.

What It Takes To Embrace the Life He Has

Dear Chris,

You keep replaying her words over and over again in your head. Partially because she had terrible bedside manner, but also because you just weren’t ready to hear it. I mean, how could you be?

Don’t get me wrong. You are very grateful that the neurologist correctly identified Bray Bray’s head motions as a baby form of epilepsy called Infantile Spasms. And of course, after those seven heartbreaking days in the hospital when he was just 5 and a half months old, you were so happy to have him home as the seizures lessened in frequency and then disappeared like magic.

Of course, like all magic, it’s tricky. And when it comes to how a doctor can essentially save his life so eloquently and then talk to you so flippantly, well, it’s complicated.

As you read this, Bray Bray is 9 months old and declared seizure-free from the Infantile Spasms. Following the hospital visit, you and Melanie have spent every day and night for the past 3 months on pins and needles while injecting Bray Bray with actual needles of ACTH— the powerful hormone medication that stopped the seizures in its tracks.

Your relationship with ACTH is tricky to say the least— mixing the ingredients like you are a chemist who never took chemistry, loading it up into the syringe, and administering to your 6, 7, 8-month-old Brave Angel while praying that the medication you inject into his legs continues to allow his brain to heal.

Bray Bray in 2015

The good news is that the neurologist is happy with the latest EEG results, and it looks like Bray Bray is seizure-free. Spoiler alert: He will remain that way for the next nine years. When they do come back at 10 and a half years old, that will be my burden to bear, not yours.

For now, you can resume the developmental therapies you originally were planning to start before the Infantile Spasms took hold. You saw the early signs of milestones not being met, but little did you know that there were these underlying factors until the seizures waved their big red flags, one involuntary head motion at a time.

The bad news is that you just had a conversation that will shape the next few years of your life and nearly destroy your mental well-being. The neurologist just couldn’t let us have the win—she had to add the most heart-wrenching caveat of caveats.

“Your son will never be normal,” is the gist of what she said, as she went into statistics and jargon, delivering the prognosis so cold, so calculating, so… permanent.

As I mentioned, you were not ready to hear it. And honestly, I applaud you for how you managed to hold back your fury in that moment. You didn’t lash out at her or unleash a tirade on her. Instead, you do what you’ve always done, what the underdog always does – take the punch, then come back with all the well-meaning defiance you have in your heart. You leave the doctor’s office, carrying Brayden to the car, along with this impossible burden you now have on your shoulders, to prove her wrong.

For the next few months, you will barely sleep because of this conversation. You do your research, you line up all the therapists to come to the house for early intervention services—21 sessions per week across 6 days per week, to be exact. Physical therapy, Speech therapy, Occupational therapy, early Special Education services, Vision therapy, Music therapy. You also take him to Swim class on his one day off from therapy.

You and Melanie do it all, and document it all: the progress, the therapists’ notes, the suggestions for sensory toys and standers and gait trainers. You turn your house into a sensory gym with everything any therapist needs to help Bray Bray along the way.

And deep down, you know you want to prove her wrong. You are thinking about the video you’ll show the neurologist when Brayden talks for the first time and says, “Daddy,” delayed as it may be. You can’t wait to show her the video of him taking his first steps, as he looks up at you, smiles, and reaches for your outstretched arms.

You will fight and scratch and claw.

And honestly, you will do everything right for him.

And then, it will happen.

Not another conversation with her, but instead, the conversation you need to have with yourself.

This conversation is long overdue. You’ve been working so hard and stretching yourself so thin while taking care of Bray Bray, you’ve forgotten to take care of yourself.

You never let yourself process everything that happened, not to him, but to you.

You never envisioned that this is what parenting would look like for you, I mean, how could you?

But now, it’s time.

It’s time for you to do something that I will forever be grateful for.

You need to come to grips with the reality of the situation.

You need to get over how she delivered that news to you so terribly at the absolute worst time— and forgive her.

You need to grieve the life Bray Bray might have had… and embrace the life he does have.

Chris, I promise you. Once you do this, once you fully accept that his path doesn’t have to hit every milestone to still be fulfilling, you will be able to let it all go— all the pain you never fully addressed, all the questions about faith, all the somber undertones you’ve been feeling.

You, Melanie, and Bray Bray will live an adventurous life, even if it’s in his wheelchair. And one day, you’ll see, his transcendent smile will change the world. Like I said, magic is tricky.

For now, you will be defiant because you just left the doctor’s office and heard what you might have already suspected but didn’t know how to process. You aren’t ready yet.

But when you are, I’ll be here on the other side, and I wrote this poem for you. Don’t open it until you are truly ready. You’ll know when.

You Thought Strength Was Defiance

You thought strength was defiance.
You thought love meant holding the flood back
with your bare hands.

But one day, a boy named Brayden—
you will call him Bray Bray—
will change everything.

He will not speak in words,
but in smiles that disarm
every wall you’ve built.

He will teach you this hard truth quietly:
strength is not in the holding—
it’s in the letting go.

You will sit in hospital rooms
that evoke fear but reveal hope.
Monitors will hum lullabies of uncertainty.

You’ll learn new languages:
Infantile Spasms. ACTH. EEG.
Eventually, GNAI1.

Each one a storm forecast.
Each one a reminder
that your compass must now follow his light.

And through it all—he will smile.
A smile that dares the darkness to stay.
A smile that says, “I am here, and that is enough.”

You’ll remember the film Winter’s Tale
and how it whispered,
“Some souls are born to save others.”

You won’t understand it then.
But later, holding your son’s fragile, fighting frame,
you’ll know this:
He was born to be your miracle.

There will be days when missed milestones
feel like relentless hammers to the head—
first words that never come,
first steps that never fall forward,
a future you can’t quite picture.

And you will hurt like hell.

But listen closely—
because in that ache,
you’ll hear something sacred:
your own awakening.

You’ll learn that love is not a checklist.
It is breath shared in silence.
It is laughter on hard days.
It is the music he makes—
drumming along to the beat on good days.
And there will be hundreds of good days.

It is the moment you realize
that while you’re holding his hand,
he’s been holding yours all along,
guiding you home to yourself.

Know this, Chris:
he will call you Dad in his own way,
even if he never speaks the word aloud.

And that will be enough.

Ten years from now, I will thank you—
for being self-aware enough to tremble,
for choosing presence over perfection,
for allowing the breaking
to become your rebirth.

You thought you were strong.
And you were.

But strength, you’ll learn,
isn’t made of steel.

It’s made of surrender.

It’s made of softness.

It’s made of his pure, persistent smile,
which keeps saving us,
through time and space,
over and over again.

I’ll see you on the other side of the storm,
Chris

Bray Bray in 2026

Three Rapid Questions

Describe one thing you do to move through fear or uncertainty during caregiving.
I pause long enough to remember how blessed I am that Bray Bray is still with us, letting gratitude interrupt the spiral. I then to my favorite music playlists, which always helps me change the rhythm of these moments and reset my nervous system.
Thinking of someone you admire/respect, name three of their standout qualities/characteristics
Someone I truly admire is Bray Bray’s music therapist Alisha. She is a huge part of our lives and the way that Bray Bray responds to her is unlike anything else. The three qualities about Alisha that I admire most are:
- Her passion for helping others.
- Her presence, even when times are hard.
- Her thoughtful, selfless nature.
What’s one quote/movie/book that’s inspired you?
By far, the movie that has inspired me the most is Winter’s Tale, which I referenced in the poem I wrote to my younger self as part of the above letter. The overall theme of the movie is that some people were born to be other people’s miracles, and it isn’t always who you think it is. I say this all the time: Bray Bray was born to be our miracle. Even though he can’t talk, his smile lights up every room he’s in. His presence simply makes everyone around him better, and you can just feel his positive energy when you are around him

Prompt for discussion:

What does it mean to you to truly let go and be present, to live in the moment without the baggage of the past, or the worries of the future?

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

Subscribe now

The Spring Season of Letters From A Caregiver: “Misunderstood, and everyone has an opinion,” By Victoria

Victoria — Thu, 19 Feb 2026 10:40:03 GMT

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? Carer Mentor is designed to offer:

Heartfelt empathy for Caregivers. A dynamic hub of resources and insights. A portal of hope and a community network. 'Human-ing' with a lot of ❤️

The Carer Mentor website is a wealth of evidence-based resources and curated anthologies (iCARE Stack). It’s also a community network of caregivers and writers who share diverse personal experiences, about Giving and Receiving Care, Bereavement and Grief, Dementia, and Cancer.

With your limited time and energy, you can use Carer Mentor as your go-to source for articles and anthologies that can spark ideas or signpost you to other publications and writers—a portal to others, who are human-ing hard too!

One of the most popular articles is "Caregiving Hacks and Tips ”, containing practical ideas for hands-on caregiving. Maybe something will fit your situation.

The Spring Season of “Letters from a Caregiver” starts today

I started this ‘Letters from a Caregiver’ Collaboration because I believe that this approach offers us, as authors, the opportunity to give ourselves more self-compassion. As readers, we can discover wisdom we may not know we need.

Author’s Bio: I’m Victoria, based in the UK. I resigned from a global corporate job in Belgium to help my Mum care for Dad until his passing in 2020. Now, I’m caring for my mother. My mentoring business and this Carer Mentor mission both flex around my main priority: caregiving. I’m living my bespoke version of thriving. ❤️

Previous letters to my younger self:

“Changes beyond my control but agility beyond my imagination.” links to how caregiving started for me in 2015 and bridges to younger me at the end of May 2016
‘Relearning Hope In A Time Of Darkness’ is a letter to myself at the end of 2019

The image below is a timeline: a line graph with a y-axis ranging from -5 to 5 and an x-axis representing time in years, with 0 on the y-axis.

You can see the destination point for each letter on this timeline. Every year, I did this timeline exercise, allocating a relative score to each major event.

2015 was one of the worst years I’ve experienced—a perfect storm of events, a test of love, and it was torture; ‘A Prelude to Caregiving: Love and Torture.’ And yet, this prelude wasn’t everything. Interwoven were chosen-family events that held me together, with quality moments and memories: Brussels: ‘The Sixth and Sixteenth Relocation’ 2015 and 1999 were two significant milestone years. Hence, the seismic activity, the sharp amplitudes of life you see above.

“Misunderstood, and everyone has an opinion”

Hello, 2017-me, I’m back with another letter.

It’s February 2026 here, you, me - we’re well, looking after Mum and living big in the small heartbeats of now. Sigh, I know that’ll be hard for you to comprehend from where you are, but it’s true.

Today, despite the constant background noise of uncertainty and random reminders of how fragile our bubble is, there’s a beautiful calm.

Before this calm, there’s been a long, twisted rollercoaster, with many emergencies. I’m sorry, hon. I think you already have an inkling of how Dad’s health is deteriorating. The plateaus will become shorter, the step-downs steeper, and his decline accelerates. [In 2017, I had no idea Mum would be diagnosed with cancer.]

So keep making the most of your time in Brussels before you move back to the UK. It’s becoming too exhausting, expensive and gut-wrenching to be a flight away from your parents when things are becoming more fraught.

Just don’t beat yourself up about creating a little space to figure out the what, where and how of it all. Because everyone seems to have an opinion, and you need to be able to hear your own inner voice.

You’re trying to recalibrate, but everything feels messy and up in the air.

You took the full year, the maximum medical leave you were allowed to help Mum and Dad (thank you, Belgian policies!). And then, from October 2016, you’ve just spent six months trying to be productive back at work. You tried to convince yourself and the company that you could take on a new role. Flip-flopping thoughts with increasing dissonance.

Choosing to resign was the best decision, and the only decision that felt right. Phew! Bravo! I’m so proud of you!

It’s a big relief. You feel more in sync with yourself, but you’re not able to articulate that yet. You will, by December 2017, though. Here’s the poem-proof: Head-Heart-Gut-Aligned:

Text within this block will maintain its original spacing when published

When the world comes knocking on your door, cracking you to attention
Avoid the paranoid thoughts, fears linked to past-contexts, expectations and perceptions 
Open that door with excited anticipation...comforted by all you’ve learnt, & what's emerging 
You’re Liberated of career chains, and life’s conditioned state
you're already armed, primed for this - 
so 'GO On, escape!' 

Today, you’re focused, ..evolving, and.. carving a new way forward;  
Discovering a path, with no stations or exact destination 
So maybe for once you can savour this journey: be curious, awake, adapt & lean in... 
stay open to even more changes, as the uncertainties begin 
This time it's not the results that's going to define this ride 
Nor a bonus, a salary or inflated pride 
Because now, you've chosen to prioritise CARE,  
For your parents, for yourself and the select few, you love & embrace like life-giving air

So when you hear that knock, it’s just a clear reminder that today 
It's one of many opportunities you can hear clearly, now that you're out of the fray 
emerging from the whirlwind your senses are more alive  
You are out of the trancelike state of sleep-walking through your own life

Relish the uncertainty, embrace the new connections,
And above all else, be brave beyond your previous comprehension.
Because after what was some awesome career progression,  
you now realise, what makes you feel alive 
You’ve reprioritised, refocused and now you’re on this path 
Exactly where you should be, to be yourself and thrive 

Even if it means journeying through pain, it’s feeling and THAT, is life 
So, now that you feel fulfilled, grown-up & evolved from that past, 
Be here, ...Be present  
Because NOW, you can Stand-up straight 
……...At Last!

YAY!

And still, in September, there’s a nagging voice in your head.

“What will people think?”

Even if you’re becoming clearer, 100% aligned about your choice to care for your parents, you’re already battling the assumptions, biases and imagined motives others are imposing on you.

The career-focused ‘friend’: Why would you leave a global VP position to be a carer? Can’t you get someone to help your parents? Why don’t you try …?

The UK taxi driver: “Aww, that’s nice. That’s the good thing about your culture, eh, you look after your parents.” I’m Chinese

You don’t know the term ‘filial piety’ yet. Soon you’ll realise it’s how some may interpret your actions and motives. Filial piety is defined as respect and duty toward parents/elders and refers to honouring, caring for, or obeying family members, often in a Confucian context.

I appreciate that may fit some, but we know it doesn’t fit our ‘Why’. Independence, agency, and choice underpin our decisions - probably because we’re born in the UK, but more likely because Dad drilled into us from a very young age, the need to be financially independent and not to rely on anyone but ourselves!

We don’t kowtow1 or feel obligated to be a caregiver. Being perceived as a dutiful daughter or ‘obeying’ makes me cringe.

Dad wanted to make sure I wouldn’t be dependent on anyone - including them. He wanted me to be ‘able to stand on my own two feet.’ It’s no wonder that I’m strongly independent!

The decision to resign and care for Mum and Dad is all about Love—not just for them, but also about what I need. What I need to feel whole and aligned with my values. If people are misunderstanding your motives or can’t get their heads around that, that’s okay.

You know. Mum and Dad know.

Right now, you’re cautious about telling anyone that you’re caring for your parents. You're wondering how much time you’ll have to ~~use~~ waste defending your decision and if it’s worth it. You’re recognising the ones who want to outshine or out-career you in conversations, or worse, patronise or pity you!

Let’s face it, though, in 2017, you’re suddenly conscious of your own internalised misperceptions, the social conditioning about what ‘being a caregiver’ means. You’re shifting your lens and curiously recalibrating your identity.

You know how hard the last couple of years have been; those are the realities of caregiving that others may not get, that you didn’t know before! This is where you start advocating for others; why we’re doing what we’re doing today.

You’re more guarded and jaded about the world, where you were used to first introductions being premised on titles, trips, accolades, and ambition.

Since 2017, there’s been a natural attrition among colleagues and friends. Some intentional choices. Other connections simply wither off the vine, untended and without sunlight. The silence between texts and calls grows larger. Reducing the rollercoaster of our caregiving life and emotions to a journey from point A, ‘the last time we talked’, to point B, ‘ now’, feels both insurmountable and reductive at the same time.

So, now you’re more discerning.

In 2017, you’re trying to find your path in life beyond professional work. Placing less emphasis on what others are thinking and focusing more on what matters most to you.

You’re setting boundaries, not just about who to connect with, but also how you spend your precious time and energy. Time is our most expensive asset. (I’m so relieved we found the Monash mindfulness course.)

Where you are right now, you’re navigating assumptions, and you’re constantly upgrading your bullshit radar.

I’m sorry to say you’re going to feel conflicted about the well-intentioned people who miss the mark in their efforts to be helpful or supportive. You get showered with ‘sorries’, sympathies and pity, and some big disappointments. There’s a lot of unsolicited advice. Those pedestals were way too high, anyway.

You reach your limit when visitors need to be comforted by Dad because they’re feeling bad about him being ill! Then they lecture you on what you need to do for him!

Caresplainers throw advice from the stands whilst you’re in the arena. It’s worse than the mansplaining we’ve experienced. You’ll see it, run that gauntlet, and share this new term, ’caresplaining’ with your friends in the Carer forums.

And there’s the blessed, saving grace.

You find Carers UK and other caregivers—finally, people who get it. All of it!

We connect with other caregivers who understand that we’re more than our caregiving role, more than what we do for others, even when the ‘doing’ consumes all our time and energy.

So, keep doing exactly what you’ve planned. Ask yourself the questions, stay curious. Trust yourself. You’re unlearning internalised perceptions and socially conditioned beliefs. When you understand your value, other opinions won’t matter—regardless of who says it, or how entitled they think they are, to give it.

The people who really matter are still on the journey with you. Be true to yourself, be clear about your purpose, and how you want to show up for others, and you’ll manage to get through the next tough years. Be you.

BIG love and hugs, Hon.

Three Rapid Questions

Describe one thing you do to move through fear or uncertainty during caregiving.
Above all, music- to shift my thoughts or my mood: #11 This Caregiver’s Music: ‘A backbone of music to stabilise this year.’
Thinking of someone you admire/respect, name three of their standout qualities/characteristics
One of my first mentors: her ability to see the big picture as well as the details, and to translate both perspectives to others: curiosity and connection.
What’s one quote/movie/book that’s inspired you?
Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.
Viktor E. Frankl ‘Man’s Search For Meaning’

Prompt for discussion:

Have you been through a time when your life choice was misunderstood?

Tell us about a time when you realised you’d internalised a socially conditioned expectation.

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

Subscribe now

Kowtow is a Chinese term referring to the traditional act of deep respect or submission, performed by kneeling and bowing low enough to touch one’s forehead to the ground. Derived from koutou (”knock the head”), it signifies extreme reverence or submissiveness. Figuratively, it means acting in a fawning manner or excessively obeying authority.

"The Hardest Decision You Ever Made Was the Right One" By Tessa Shahid

Victoria — Thu, 29 Jan 2026 13:02:56 GMT

The ‘Letters from a Caregiver’ Collaboration series continues with this article, the eleventh letter of the Winter 2025/26 Season.

Letters from a Caregiver’ is a weekly article where a caregiver offers wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

Previous letters, this season:

The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria
‘You Each Deserve Your Own Life’ By Jodi Sh. Doff
‘Relearning Hope In A Time Of Darkeness’ By Victoria
‘Having Compassion for Your Earlier Self’ By Anna Du Pen
“Grasshopper, you are the expert” By Sarah Coomber
‘You Published Your Book! And Now What?’ By Cindy Martindale
‘The Light We Carry’ By Victoria
‘It’s Not Her, It’s The Disease’ By Kerri Forrest
‘The Gift Of Self-Compassion For The Caregiver’, by Amy Brown
“When the Waves Keep Coming: Trust Yourself” by Anna De La Cruz

Today’s letter is by , whom I met in 2025. I knew Tessa had had a long experience of caregiving, but I hadn’t appreciated just how long, complex and frankly traumatic, until I read her letter today.

My heart aches for the young Tessa, and I’m also impressed by the strength of her character that shines through in this letter. I can’t quite decide between saying “wise beyond her years” or “aged by all things caregiving”. I think both are true.

She says,

“You were a young woman carrying an impossible load with courage no one taught you to name. You deserved help long before you asked for it. You deserved compassion before you allowed yourself to rest. You deserved forgiveness the moment you acted, not years later, after the pain faded.”

I have more questions for her now, and I look forward to learning from her experiences.

I recommend listening to her podcast, if you haven’t already. Alternatively, read Tessa’s introduction to her publication: Start Here: Welcome to Between Now and Next

Author’s Bio: Tessa Shahid is a project leader, podcast host, youth mentor, and advocate for aging populations. She spent over 15 years navigating caregiving alongside major life milestones. Both of her parents have since passed, and the lessons from that season continue to shape her work. She hosts Between Now and Next, a podcast and Substack focused on caregiving, grief, and life transitions.

Dear Tessa,

It’s January 4th, 2026, approximately ten years after you decided to move your parents into a nursing home permanently.

I’m writing to you from years in the future, long after the day you wondered if you had just ruined everything.

You didn’t know it then, but that moment would stay with you, not as a scar, but as a turning point. One you would spend years trying to forgive yourself for.

I remember you clearly.

You were in your early twenties, just out of college. You were exhausted in ways no one could see. For over ten years, you had been a caregiver long before you had words for that responsibility, long before it quietly consumed your childhood, adolescence, and much of your young adulthood.

By the time you decided to place Mom and Dad in a nursing home, you were running on fumes.

You weren’t just tired. You were guilty, frustrated, scared, overwhelmed, and completely alone.

There was no family support to fall back on. Only a dwindling rotation of paid helpers, increasing care needs, and no real safety net. It was just you, trying to hold together a life that required far more than one person to sustain.

You had spent years doing the impossible.

From the outside, it may have looked sudden, but it wasn’t. You didn’t place your parents in a facility impulsively. It wasn’t careless. It wasn’t because you didn’t love them enough.

It came after years of caregiving that demanded everything you had.

Here’s what I remember about where they each were.

Mom had been in and out of nursing homes and rehabilitation facilities for nearly six years by that point. Each transition was disruptive. Each separation between your parents during medical crises was painful. They had been together for over fifty years, and as they aged, they struggled deeply when apart. Each return home came with anxiety, exhaustion, and fear that never quite went away.

She was bedridden after a failed knee replacement and a stroke. She was non-weight bearing on one side and partially paralyzed on the other. When she fell, slipped, or rolled out of bed, you had to call the fire department because you physically could not lift her. You were a daughter navigating emergencies meant for trained professionals.

Dad had been paralyzed from a stroke years earlier. Although medically stable, his mobility and independence continued to decline as he aged, made worse by his frail stature and a growing fear of falling. Watching him age inside a body that already demanded adaptation was its own quiet grief.

And through it all, you worked when you could and completed college classes online, sometimes inconsistently, sometimes barely keeping pace. You tried to keep a roof over everyone’s head. You tried to make sure they were safe. You tried to be steady when everything around you was unstable.

You were learning how to begin your own life while supporting two parents with profound disabilities. You were barely hanging on. And no one was coming to relieve you.

When the decision was finally made, it didn’t feel like relief.

It felt like you were letting them down.

You felt like you were giving up on them. Like you were putting them away. Like you were failing at the one role you had learned to define yourself by.

Your mother was angry. They both wanted to stay home, though your dad understood a little more. You weren’t sure they could fully see or understand your struggle. Their anger confirmed your worst fear: that you were a bad daughter.

You second-guessed yourself constantly, wondering if you should have tried harder, or if love meant giving everything until there was nothing left.

You worried about judgment.

From estranged family members who knew pieces of the story but stayed away. From church members and pastors who had never lived in a caregiving situation. From people who seemed to believe devotion should be limitless, but had never tested their own limits the way caregiving does, again and again.

But the harshest judgment didn’t come from them.

It came from you.

Internally, you were ruthless with yourself during that transition. You expected perfection from someone who had been surviving since childhood. You demanded strength from someone who had never been allowed to rest. You treated your need for stability as a moral flaw rather than a human one.

You didn’t yet understand that needing a break doesn’t make someone weak.

It makes them human.

I want you to know something you couldn’t see then.

You were choosing safety, proper support, and consistency of care for your parents. You needed help, relief, and reliable medical support as their health declined, and you needed space to establish your own foundation, education, career, and a stable place to land.

You had already carried responsibility alone for a decade. You had proven your devotion in countless quiet ways, through sleepless nights, repeated medical crises, and years of choosing the well-being of others over yourself.

Placing Mom and Dad in care was not abandonment.

It was an acknowledgement.

Acknowledgement that love does not override physical limits. Acknowledgement that one person cannot replace an entire support system. Acknowledgement that your own survival mattered too.

You didn’t make that decision because you didn’t care enough.

You made it because you cared deeply and were human.

It took time for the guilt to soften. It didn’t disappear overnight. It lingered, reshaped itself, and resurfaced at unexpected moments.

But slowly, something else emerged.

Perspective.

With distance, you began to see how unsustainable your life had become. How narrow your world had grown. How your nervous system has been locked in survival mode for years. How much had you given before you ever asked yourself what you needed?

You saw that your parents were safer, their needs better met. A care team didn’t erase your role. It allowed it to change.

You could be present without being consumed.

And perhaps most importantly, you began to understand that choosing support was not a failure of love. It was an act of responsibility.

I chose this topic and wrote this letter in the hope that these words feel like a warm hug.

You were not a bad daughter.

You were a young woman carrying an impossible load with courage no one taught you to name. You deserved help long before you asked for it. You deserved compassion before you allowed yourself to rest. You deserved forgiveness the moment you acted, not years later, after the pain faded.

That day in the car, the one you thought would haunt you forever, did follow you.

But not as punishment.

It followed you as proof that you were capable of making hard, grounded, loving decisions even when certainty was unavailable. That you could choose sustainability over martyrdom. That you could honor both your parents’ needs and your own humanity.

If I could sit beside you now, I wouldn’t try to change what you did.

I would like to thank you.

For surviving. For choosing stability. For trusting yourself when no one else could carry the weight with you.

Some decisions don’t ask to be justified.

They ask to be forgiven.

And this one finally has been.

Author’s Note

Caregiving is a deeply complicated experience.

I wish more people understood that when an active caregiver decides to transition a loved one into a community, whether that’s a nursing home, assisted living, or independent living, it is never a decision taken lightly.

Our healthcare system in the United States could and should be better. And still, these communities often provide a level of structure and support that caregivers, especially those doing it alone, simply cannot replace on their own, no matter how devoted they are.

Even after a transition, caregivers remain involved. You still advocate. You still check in. You still make sure your loved one is safe, treated with dignity, and not overlooked or taken advantage of. But sometimes, even that role is a lighter lift than what came before.

There is no single “right way” to be a caregiver.

There is only care given with love, empathy, understanding, compassion, dignity, and respect for your aging loved one, and for yourself.

The Closing Rapid Fire Questions from Victoria:

1. Courage to me is…

“Courage to me is being honest about who you are and how you feel. I’ve learned it makes life a little simpler.”

2. Thinking of someone you admire/respect (friend/colleague/well-known person), name three of their standout qualities/characteristics:

“I admire the audacity, tenacity, and work ethic of my Father.”

3. What’s one quote/movie/book that’s inspired you?

One of my favourite quotes is “Every day is a chance to begin again,” by Catherine Pulsifer.

Tessa’s prompt for discussion:

How have you managed the emotional impact of being a caregiver?

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

"When the Waves Keep Coming: Trust yourself" by Anna De La Cruz

Victoria — Thu, 22 Jan 2026 08:33:59 GMT

Hello, dear Friends! If you’re new to Carer Mentor, you can learn more about me by reading Who Started Carer Mentor and Why?

The ‘Letters from a Caregiver’ Collaboration series continues with this article, the tenth letter of the Winter 2025/26 Season.

Previous letters, this season:

The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria
‘You Each Deserve Your Own Life’ By Jodi Sh. Doff
‘Relearning Hope In A Time Of Darkeness’ By Victoria
‘Having Compassion for Your Earlier Self’ By Anna Du Pen
“Grasshopper, you are the expert” By Sarah Coomber
‘You Published Your Book! And Now What?’ By Cindy Martindale
‘The Light We Carry’ By Victoria
‘It’s Not Her, It’s The Disease’ By Kerri Forrest
‘The Gift Of Self-Compassion For The Caregiver’, by Amy Brown

Friends, let’s take a deep breath together and exhale.

I hope you’re managing to navigate the start of the year without too much struggle, but I know it’s difficult with everything happening in the world and at home.

I knew January could be tough, which is why I’ve been publishing articles that I hope can offer some inspiration and enablers for 2026:

#11 This Caregiver’s Music: ‘A backbone of music to stabilise this year.’
“Meet Your Habenula: Your Motivation ‘Kill Switch’. The Tiny Brain Circuit With a Big Impact.”
“Working With Your Habenula as a Caregiver”, including 30 starter ideas that we can use to soften the habenula’s impact.

I’ll also be evolving the Community Hub to support more in-depth discussion

When you’re being pulled in multiple directions, and your inner chatter gets louder, it’s easy to lose confidence in yourself and your choices.

I’m grateful to Anna for sharing this letter with us today, because it brought home to me how much I need to make the most of here and now. Not the ‘carpe diem’ approach, but to reconcile with all that’s here: good, bad, ugly, fear, angst and everything in between.

As Anna says, in this present moment ‘Trust yourself’

Wise words coming from a wise lady, whom I met in my early days on this platform. You’ll see from her letter and her publication “GenXandwich” that she somehow manages to juggle multiple responsibilities, including her social impact and gender equity work.

When you read her articles, I assure you you’ll be inspired by how she articulates the challenges of care and caregiving in the US and by her personal essays about how life is messy and beautiful, exhausting and wonderful. Here are a couple I’ve shared previously:

Thank you, , for this letter and for all your advocacy. I appreciate you and our connection.

Many thanks to Anna’s husband for these photos that capture his beautiful family. [Checkout his article “I think these are the best photos I took in 2025. This is how I’m trying to process the year.”]

Author’s Bio: 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.

When the Waves Keep Coming: Trust yourself

Written to Anna of early 2019, from Anna in January 2026.

Dear Anna,

For just a moment, take a deep breath and channel the salty ocean breeze you were basking in just a few weeks ago. Remember the feeling of the warm sand on your feet and the giggles of your boys digging and wading and treasure-finding. The sound of the waves crashing and the taste of açai and the awe of watching humpback whales breach before your eyes.

That recent family trip to Maui for your 40th birthday was such a beautiful reprieve from a daily life that has been rapidly consumed by the chaos of multigenerational caregiving. It was so good. So needed. So well deserved. I hope you can let it continue to fuel you.

On your birthday eve, even with piña coladas in paradise, it’s true that you were still overcome by the raw tenderness of entering a new decade, and the sadness that comes with the accelerating perception of time passing. You felt grateful for the ways you’ve been fortunate in life, and how far you’ve come. But you also wonder what you’re still missing in midlife, what you sacrificed, and how you’ll manage with all the caregiving responsibilities you now hold. And I can tell you that this pre-birthday ritual will continue into your future, my dear. But on that island far away you were free to sit with and feel those feelings, surrounded by your family and beauty and temporarily without obligations.

Travel has always been one of the greatest joys of your life, as well as an escape. From that first father/daughter trip to Mexico when you cried the plane ride home, and almost every trip since. These days you know that you can (and will) still receive calls from mom’s assisted living facility to report her latest non-compliance, or get texts about forms needing signed for your brother or get a message that your dad is navigating another health setback. Being truly off the grid is hardly possible anymore, but boarding a plane allows you to pretend, doesn’t it?

Mentally and emotionally, it is how you have allowed yourself to step away from the struggles of everyday life and become immersed in all that is unfamiliar and new. To be present in places where you don’t see to-do lists everywhere you look, where your worth is not linked to productivity -- and besides, productivity is measured not in tasks completed, but in how much you smiled and felt joy. Travel is when you become your most curious, creative and free. Any life becomes possible.

I know it feels impossible, but I wonder if you can channel a little bit of that feeling now. You are back home in the throws of life with a five year old, a toddler, and both parents navigating dementia diagnoses. You’ve finally found a rhythm with two children, which was harder than you expected. You’re barely holding the weight of managing your difficult mother’s needs - everything from her health to finances and living arrangements. The pain of witnessing your dad’s declining health is heavy on your heart. The learning curve of taking over guardianship responsibilities for your brother with Down Syndrome is steep. It is so, so much. You’ve taken on more than your share, and you are somehow keeping it together.

And now you’ve been thrown another tremendous curveball - a positive pregnancy test. Unplanned. Holy sh-t.

I know, you really don’t know if you can do it. You’re already feeling completely maxed out with two children and two adults dependent upon you. While there was part of you that hadn’t explicitly closed the door to having more children, you certainly had not proactively made the decision to have another. A third pregnancy at 40? Another postpartum era ahead?

I know you don’t not want another, in fact it is exciting when you allow it to be, but it also feels like it could break you. And yet, your heart skips at the thought of possibly having a daughter. You are romanticized by the idea of a bigger family around the table, louder dinners and holidays, and another sibling for your two boys.

You’re also wondering, what if it is a third boy? And are you terrible for even caring? Will a third child change your relationship with your other children, or break your marriage? You just truly do not know how you will do it. Or how you could choose not to. And admitting that ambivalence is also terrifying and brings you shame- but know that there is nothing to be ashamed of, love. Your feelings are valid and human, even if they are rarely shared out loud.

Even before this news, despite it being clear to everyone on the outside how much care you’re giving already, you still have felt guilt and judgement that you’re never doing enough. There is always a list of things that mom needs, the feeling you should see your brother more. You’re still stung by the scolding your uncle felt entitled to lay on you for not doing more to help him with a task for your mom that he offered to take on - even while you juggled the rest of your mother’s needs. It was hurtful, but you know deep down that he was coming from a place of privilege, of having never been a primary caregiver, and that he was wrong.

Now, fresh with the news of an unexpected pregnancy, like so many others I could try to reassure you by saying that “one day you won’t be able to imagine it any other way.” But even if that’s true, I know it’s not helpful to you to hear that. The truth is that there is more than one possible path, and it’s ok for you to be unsure which one to take. It’s also ok for you to trust yourself and honor the process of weighing all your options. It’s ok for you to do what’s best for you and your family.

So Anna, perhaps let yourself drift back to that peaceful island feeling for a moment. Can you block out the noise, the external (and internal) judgements, and just listen to your heart? What if you ignored the shoulds, and channeled what brought you peace and joy? If you accepted the things that are hard but freeing for you: that it is okay not to do it all, to hold boundaries and to ask for help?

But dear Anna, seven years on - which feels like both a blink and a lifetime - from the eve of your 47th birthday, let me tell you that you can trust yourself. I can tell you that it will be ok, even though I know it doesn’t feel that way now (and that’s also ok). Don’t get me wrong - things will, in fact, get much harder. There are some intense years coming - a global pandemic, loss and grief, even more volatile moments in sandwich caregiving. But they will reinforce how resilient and capable you are, and perhaps even help you see what is most important to you. Your capacity to love will not be divided, it will expand.

You will survive this beautiful but incredibly challenging chapter of your life, with no regrets, and with so much to continue to be grateful for with each year that you have the privilege of completing.

With so much love and compassion,

Anna

P.S. - Spoiler alert - You’ll endure countless people telling you that it will definitely be another boy so “get ready.” But you will get your little girl and she will complete your family in ways you couldn’t have imagined. There is magic and hardship and so many adventures to come and your family of five will be your greatest comfort and gift through it all.

Link to articles by Anna:

Why So Many Women are Opting out of Motherhood

Entangled and Estranged

The Closing Rapid Fire Questions from Victoria:

1. ‘Courage to me is standing up for what or who you believe in, even when it’s the hardest and scariest choice.’

2. Thinking of someone you admire/respect (friend/colleague/well-known person), name three of their standout qualities/characteristics:

I think about my late father David, whose generosity, critical thinking, and compassion made him a natural leader and beloved by just about everyone he encountered.

3. What’s one quote/movie/book that’s inspired you?

The Serviceberry: Abundance and Reciprocity in the Natural World by Robin Wall Kimmerer. Kimmerer is an indigenous scientist who asks if we can learn from indigenous wisdom and the plant world to reimagine our values. Our economy is rooted in scarcity, competition and the hoarding of resources, and we have surrendered our values to a system that actively harms what we love. Serviceberries offer a model “based upon reciprocity, rather than accumulation, where wealth and security come from the quality of your relationships, not from the illusion of self-sufficiency.” This way of thinking offers so much value when thinking about the “economic failures” of caregiving. I might have to write a newsletter about that!

A prompt for comment discussion:

How have you managed caregiver ambivalence and the associated guilt?
Do you have regular ‘outs’ from the pressures of caregiving?

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

'The Gift Of Self-Compassion For The Caregiver', by Amy Brown

Victoria — Thu, 15 Jan 2026 08:51:51 GMT

Hello, dear Friends! If you’re new to Carer Mentor, you can learn more about me by reading Who Started Carer Mentor and Why?

The ‘Letters from a Caregiver’ Collaboration series continues with this article, the ninth letter of the Winter 2025/26 Season.

Previous letters, this season:

The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria
‘You Each Deserve Your Own Life’ By Jodi Sh. Doff
‘Relearning Hope In A Time Of Darkeness’ By Victoria
‘Having Compassion for Your Earlier Self’ By Anna Du Pen
“Grasshopper, you are the expert” By Sarah Coomber
‘You Published Your Book! And Now What?’ By Cindy Martindale
‘The Light We Carry’ By Victoria
‘It’s Not Her, It’s The Disease’ By Kerri Forrest

In early February 2024, when I published ‘Dementia, the Unforgettable Impact on Caregivers,’ I wanted to find a way to share how Dad and I had communicated beyond his health issues and despite the dementia-related disconnects.

Dementia patients may forget words, but I’ve seen and felt how a piece of music can reconnect us. No words are needed.

A discussion thread article started by Sarah Fay on February 16th offered a perfect opportunity to invite others to a collaboration around uplifting music memories

“Why? Dementia patients may forget words, but they don’t forget how something made them feel. Caregivers need uplifting stories; EVERYONE needs to be lifted up by meaningful moments.”

, the author of today’s Letter from a Caregiver, was one of the first contributors to the collaboration article: ‘Music Memory is more powerful than words.’ Empathy and human connection via music can overcome the Dementia Disconnect.

Our love of music comforted us as we cared for our parents, and we share a common goal to support other caregivers, especially those caring for loved ones with dementia.

I’m drawn to Amy’s essays, full of warmth and generosity. She doesn’t shy away from sharing her vulnerability and the painful moments she’s been through.

These days, Amy gently navigates her grief whilst courageously pursuing her thirst for life. I recommend reading about how she relocated from Florida to Barcelona, or how she walked the Camino de Santiago with her daughter in her publication Living in 3D. Amy’s determined to shine!

I feel blessed that we’ve grown a mutual appreciation and kinship, sharing our life experiences. Thank you for writing this letter to your younger self, dear Amy.

Author’s Bio: Author’s Bio: Amy Brown is a daughter, mother, sister, friend who became the full-time at-home caregiver for her mother with dementia just one month after initiating the end of her own 33-year marriage at age 62. In navigating multiple major life transitions all at once, Amy held fast to the idea that her destiny—her story—was still unfolding, and that each of us is in the constant process of becoming, no matter our age. A journalist, ghostwriter, novelist and essayist, Amy writes Living in 3D. A native New Yorker, she is now based in Barcelona.

The gift of self-compassion for the caregiver

Dear sweet Amy,

Close your eyes and picture it. The warmth of the sun on your face. The feel of your mother’s soft, papery hand in yours. You are sitting in the garden of the memory care facility in Venice, Florida and it is your 64^th birthday. You open your eyes and see her smile at you. She accepts the bits of chocolate cookie you offer to celebrate your birthday. She closes her eyes and lets the sun warm her lined, 87-year-old face, still beautiful, still the Mommy who cared so well for you and your younger siblings. She is still the wisest woman you have ever known. Even after dementia stole her language, her love of words, the wisdom is in her dancing brown eyes, her wry smile, and the steady feel of her hand on yours.

When you came to her room that morning, it was with a heavy heart. The nurse from hospice had taken you aside to tell you Mom was “transitioning” and explained what that meant. You know the nurse chooses the word carefully, with empathy. It doesn’t have the bluntness of “dying” and you are grateful for that kindness. Mom is refusing food or drink, she tells you. She is getting morphine for her pain, for her comfort. She only wants to sleep.

You felt so afraid as you walked slowly to her room. Not yet, please, you prayed. Not today. You stood next to her bed and put your hand on her shoulder, and said, “Mom, I’m here.” She opened her eyes and a huge smile blossomed on that beloved face. “You’re here,” she said. “Yes,” I said. “It’s my birthday. I’ve brought us a treat. Would you like to go sit out in the sun with me?” She nodded eagerly. She winced as you eased her into the wheelchair. She is so frail now. She has always been petite, but now her legs are like kindling, her shoulder bones sharp under her sweater.

You walk her past the many people you have come to know in these six months Mom has lived here. These other men and women with dementia make you smile and they also break your heart. The elderly woman walking around with one shoe on her foot, asking you if you’ve seen her other shoe. She thinks her daddy has it. You also watch the other caregivers and see yourself in their sadness, struggle and worry. You will never forget the devoted husband of Judy, the joyful woman resident who slowly, painfully, lost her joy to confusion and silence, and finally an inability to recognize her husband. You walk by his car one day as you are leaving the facility and see him, his hands gripping the steering wheel, shoulders shaking with sobs, tears streaming down his face. You got into your car and let yourself cry, too. Necessary tears. Healing tears.

You know Mom rallied for you that day, because it was your birthday. It was the last time she got out of bed. Over the next two days, she continued to refuse food and drink, only a few sips of water. On the third day, you came to her bedside and read to her from her favorite childhood book, The Bobbsey Twins. Her eyes were closed, she seemed agitated, waving a hand in front of her eyes, as if wanting to make something disappear. But her other hand gripped yours tightly. You sensed she was afraid and you didn’t want her to be afraid. The same way her bedtime stories soothed you, you hoped the reading aloud would soothe her. You imagined transporting her to a more comfortable, kinder place, in this particular story, a kitten that keeps little Freddie company in the darkness of the department store where he wandered away and got lost. You know that your mother’s beloved cat, Pablo Picasso, is waiting at the end of that rainbow bridge and you hope she is thinking of him. You start to sing Freda’s favorite song, Kermit’s “The Rainbow Connection.”

It is music that has connected you time and time again, over the years, and especially when dementia took away so much else. On the CD player in her room, you play her other favorites: Frank Sinatra, Tony Bennett, Nina Simone. The night she met your father, they listened to Nina Simone play live in Greenwich Village. When you turn to another beloved song, Jim Croce’s “Time in A Bottle,” it is almost too much to bear. But she is no longer waving her hands. Her breathing has calmed although her eyes remain closed. In these hours together, surrounded by the music, time stands still. It is choreographed comfort for both of you.

“I love you, Mom” you said that day, again and again, leaning in close. “It’s okay to let go. It’s okay.” That afternoon you are joined by your sister and brother-in-law at her bedside. As she gripped your hand and your sister’s, and a kind nurse stroked her hair, she finally let go. She was at last at peace.

But my dear, your peace has proved elusive. You have had a hard time letting go of the guilt for Mom spending her last months in a memory care facility, for not being able to care for her single-handedly on your own as you had been for the previous year. While living with you, she had a fall and then a medical crisis. That time, you thought she was having a stroke. It turned out to be a vasovagal incident as she sat on the toilet, but the temporary loss of consciousness scared you badly. You called 911 and followed the ambulance to the hospital, feeling totally out of your depth. You were her daughter not a nurse. You cooked her food, nudged her to eat, dressed her, changed her diaper, bathed her, settled her on the couch where she slept most of the day. Tried to focus on your work on the computer, with an eye out for Mom. But with that stroke-like incident, you felt unequipped for this level of care. You had been managing it all, working full-time from home, getting brief spells of help from your sister who worked full-time in an office. Your brother cared, and was grateful to you, but lived thousands of miles away in a different state. At this level of constant caregiving, your own mental, physical and emotional health was suffering. You could barely leave the house. Every time you did, even for a ten-minute walk, you worried for her safety.

This is why I am writing this letter to the younger you, who at 64 thought that Mom’s death and the celebration of life you lovingly and thoughtfully organized a month later, was the end of this sad, beautiful, painful, tender story. You believed peace for her and for you was at hand. But peace didn’t come. In the following months, when you thought of Mom, the memories that rose up were of the times when she was in distress, and self-judgement for what you could have done to avoid her pain. Dear one, I want to gently remind you that while you held great compassion for Mom’s suffering, you did not have so much for your own. Self-compassion for yourself as a caregiver was a work in progress for you then, and honestly, it still is.

Top row, l to r: Amy & Freda at Amy’s 63rd birthday dinner, laughing Freda in her 20s, Freda reads to Amy. Bottom row, l to r: At Amy’s 6th-grade graduation, and Freda at ten with her braids.

Picture Mom’s smile again. Don’t you see how delighted she would be to know that today you are living in Barcelona, that you bravely started a new chapter of life, after a divorce you initiated after 33 years of marriage. The decision to divorce and move out occurred just one month before Mom’s fall, rehab stay, and your life as her full-time caregiver began. You barely had a moment to take a breath from that huge life transition before the next major midlife transition came your way, the long goodbye of your cherished mamma. Dementia was a cruel interrupter of Mom’s beautiful life, but so it was for you, too, sweet pea.

Mom would have wanted you to reclaim your life just as you have – with courage, hope and joy. Live each day with extra radiance (your word for 2026); do it for her, too. She would want that. You know that. Deep down, I think you know that Mom always found you radiant, even as you thought you were letting her down. Like that time she clutched your arm as you were ending your visit with her at the facility. “Please,” she said. “Don’t leave me here. I want to go home.” When you asked, “Where is home, Mom?” she couldn’t answer. She dropped her hand and closed her eyes. You have never forgotten this moment. It is a struggle, even now, to forgive yourself for not taking her back home with you that day, only a few months before she died.

I urge you to forgive yourself. On the worst days of your ongoing grief (grief is never tidy, never linear), as you cry out, “I’m sorry, Mommy. I’m so sorry!”, can you hear her say, “There is nothing to be forgiven. You did your best, Amy. You always have.”

Here’s what I know now, a little older and wiser. Mom would want you to cherish the many – oh, so many! – happy memories of your 64-year story together. The story of Amy and Freda. We can always re-author the stories we tell ourselves. What a wonderful gift! The story of guilt and regret doesn’t serve you. Let’s tell a different story, one of love and self-compassion.

Here’s what I see as I look back with you on that April day in the sunshine. I see your mother’s smile as she gazes affectionately at you. I see your hand bringing the cookie to her lips, feeding her as tenderly as she once did you. I see love. I see trust. I see compassion.

Imagine yourself as a bird looking down at the scene. You know how Mom loved birds and trees and walks in the forest. Imagine it is a dove, the harbinger of peace. Let that little dove land on your shoulder, its wings fluttering like a soft breath on your skin. This is the forever peace that Mom inhabits. You get to live there, too, sweetie.

Remember the last words she said to you?

“I love you.”

That is all you need to know.

Love,

Amy

Link to articles by Amy:

‘I wish I could be like a bird in the sky’

For caregivers, a compendium of resources to help you take care of yourself, too

The Closing Rapid Fire Questions from Victoria:

1. Courage to me is befriending our fears and learning what they can teach us. The wise meditation teacher Dr. Lorin Roche says that fear is the most sincere form of prayer.

2. When I think of someone I admire, I think of my late, beloved mother Freda and particularly these three qualities that she inhabited every day of her life: kindness, generosity and humor.

3. I am a long-time collector of quotes, since my college days, with dedicated little journals for that purpose. One quote that gives me strength when my spirit is heavy is from Mark Nepo, the poet and spiritual guide, from The Book of Awakening, short passages of inspiration with which I begin each day. He writes: “Some days I wake with a cloud around my heart, and it dulls everything except the weight I carry deep inside. Yet just because I can’t make it to the light doesn’t mean the light has vanished. Faith can be defined as the effort to believe in light when we’re covered in clouds, and though it feels like the sun will never come again, the truth is it has never stopped burning its light. No cloud lasts forever.”

A prompt for comment discussion:

When was the last time you showed yourself compassion as a caregiver?
If your loved one has passed, are you showing yourself compassion for the journey as it unfolded (the way it was meant to), or is regret and guilt haunting you? Feel into all of it, without judgement.
Can you begin to re-author a story of guilt and regret by journaling on the happy and loving memories of times with your loved one?

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

"It’s Not Her, It’s The Disease" By Kerri Forrest

Victoria — Thu, 08 Jan 2026 09:21:20 GMT

The ‘Letters from a Caregiver’ Collaboration series continues with this article, the eighth letter of the Winter 2025/26 Season.

Previous letters, this season:

The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria
‘You Each Deserve Your Own Life’ By Jodi Sh. Doff
‘Relearning Hope In A Time Of Darkeness’ By Victoria
‘Having Compassion for Your Earlier Self’ By Anna Du Pen
“Grasshopper, you are the expert” By Sarah Coomber
‘You Published Your Book! And Now What?’ By Cindy Martindale
‘The Light We Carry’ By Victoria

Hello, dear Friends! If you’re new to Carer Mentor, you can learn more about me by reading Who Started Carer Mentor and Why?

Dear friends, I hope you’re giving yourself grace and self-compassion this January. While many are ‘hitting the ground running,’ we can easily fall into should-ing or envy.

~~Experience has taught me.~~ Life events continue to remind me that I need to give myself more grace to accept where I am and what I’m feeling.

It’s especially true when early January includes anniversaries of loved ones’ passing. So, while I’m deep in house admin, checking health appointments and my company finances, I’m also choosing to dig a little deeper and stay longer on this threshold.

Doing the doing, caregiving and using the tools I’ve picked up over the years to check my own head-heart-gut alignment, is my own mental health check. There’s a natural, paradoxical tension between the doing and the feeling.

The key learning for me (because I’m a big advocate of personal agency) is to resist the urge to speed ahead into plans, in an effort to remove this tension. So, I’m taking a little extra time to reflect. After all, human-ing hard is all about paradoxical living, isn’t it?

A big focus of my recent reflections has been around fear. (I’ll be sharing tools and articles on my reflections over the following weeks.)

I’ve shared this with a few carer friends recently:

Courage is not the absence of fear. Courage is fear walking.

It’s moving toward what matters.

- Susan David, in this article: ‘ Redefining Bravery: Courage is Not the Absence of Fear.” (Newsletter July 31, 2024)

After reading Kerri’s letter, I marvelled at all she’s endured. Her courage shines through it all. But geez, facing her mother’s accusations, being frustrated with every attempt to support and protect her, staying in that line of fire until things changed. We’re bearing witness to how Kerri’s surviving Dementia’s cruelty.

In a world that keeps telling us to be productive and efficient, it’s no wonder we feel bound to try to catch everything, prevent crises and smile like we know what we’re doing!

And yet, it’s simply not possible. We’re not superheroes with superpowers. We can’t steer a disease or predict outcomes of medications. We can’t prevent the difficult times or emergencies. We can’t stop grief from appearing or suddenly dominating our thoughts and days.

We can take small steps forward even when we’re scared. Courage.

We can seek support from other carers or counsellors to get some ideas of what might help us in our situation. Curiosity.

Thanks to Kerri for sharing her wisdom, courage, and curiosity with her younger self and with us, to inspire us to step forward into this new year.

Author’s Bio: Kerri Forrest is a daughter, sister, friend, and dedicated care partner who has spent the last decade serving as the “pinch hitter” for her family. Through navigating complex financial and health challenges, she has gained a profound understanding of how vulnerable we are to life’s unexpected shifts without a solid plan. Her writing draws from these eye-opening experiences to advocate for better preparation and support systems. Kerri writes ‘The Other Parenthood’

It’s Not Her, It’s The Disease

Dear Kerri,

Hey kiddo. I know you feel like your entire world is melting down right now. The violent reaction Mom had yesterday after being placed in the physical therapy rehab facility was feral, and the accusations she leveled really hurt you to your core. Your decision for her to go to rehab after pacemaker surgery was to give her time to heal and get some better habits in place. But she accused you of putting her away. She said you were a horrible daughter.

That was the day Mom became a stranger.

This is hard to hear, and you won’t understand it right now because of the complexities of our relationship with her, but it’s not her, it’s the disease.

You are on a different road now as you set out on this final journey with Mom. It will be longer than either of you could have possibly anticipated and it will be filled with so much pain some days, weeks, months, that you’ll believe that you don’t have the strength to see it through.

But you will. See, dementia—this awful, life-altering, mind-altering disorder—does something really sick. It can make the best parts of someone even better and the worst parts psychotic. Every journey is different. And your siblings, other family members, and friends are going to stand at arm’s length because they aren’t strong enough to stand in the direct line of fire with you.

For the next four years, you will find resilience you never knew existed as you watch her physical and mental capabilities decline. She will refuse ceding control although she knows she is losing it—refusing to see doctors, refusing to exercise, refusing to eat healthily, determined that she knows her body and everyone is against her.

She’s going to accuse you of trying to steal her identity when you turn in the license plates on her car because she forgot to pay the insurance and get the registration renewed.

She’s going to accuse you of trying to steal her house when you have to find new homeowners’ insurance because Nationwide stopped insuring in flood zones. You’ll have to get thousands of dollars of repairs done at your own expense, because she never gave you access to bank accounts, because she doesn’t trust anyone.

She’s going to accuse you of conspiring with the exterminator to steal her jewellery after he went into her bedroom to spray, and she will call the cops on both of you.

It’s going to be absolutely horrific. You will question your sanity for staying in the fight, knowing that it is taking its own toll on your physical and mental health.

But it’s not her, it’s the disease.

Mom always had sharp edges, and although she presents to the world as a nice person, privately she can be caustic. Being a Depression-era baby, Mom never trusted anyone, and she has always had contentious relationships with those closest to her.

So, what happens when that pattern meets the chemical alterations of dementia? Craziness.

During those darker days, everyone said, “Kerri, just hang in there. It’s not her, it’s the disease.” But they didn’t grow up with her; they hadn’t been privy to years of private conversations about the pains, resentments, and anger she carried towards so many people and the sharp tongue that would lash out whenever challenged.

So, it is understandable that you’re feeling disbelief that this isn’t her… on level 10.

But you are her caregiver. You are, and have always been since Dad died, the primary pinch hitter, the one who has always stood in the “direct line of fire.” And now you’re balancing the logistical weight of a declining life against the emotional debris of a complicated past. You’re the one who holds together a world you cannot stop from shattering, waiting for salvation from these chemical alterations of the mind.

The best advice I received during the worst of it was from a counsellor from the Alzheimer’s Association. Things were cratering quickly and I felt complete helplessness. She said, “You’re just going to have to wait for a significant event that gives you an opening.” I wish someone had said that to me sooner. I was running around with the catcher’s mitt trying to keep her world together while she was verbally attacking me almost daily. With that advice I was able to acknowledge that I was doing the best I could under the circumstances, and that I had to be okay with the things I had no control over. Without a diagnosis, I couldn’t get her the right medications, and until something forced us to the doctor, or a hospital, I’d have to wait.

But the shift did come and, while it’s not perfect, it is so much better. Our “opening” came when the prescriptions expired. The pharmacy refused to refill them unless she went to the doctor - which she had successfully avoided for more than a year. That event, and subsequently, her hospital stay after a fall, where we were finally able to get a formal dementia diagnosis, gave me what I needed to take care of her.

Now, one year into her finally being on the right medications, physical therapies, and care, she is an almost lovely human. She entertains and likes to be in the company of others. She sings happy birthday to people. She laughs with the dogs. She thanks me every evening when I leave her home for all I’ve done for her.

This upcoming Thanksgiving, cousin Nancy will invite us to dinner at her home, along with all of the paternal family as well as her friends and coworkers—more than 30 people in all. In past years, Mom would have told me to make up a reason for us not to go and we would have had another Whole Foods ham and sides.

But, this year, Mom will be excited to go. She and her caregiver will pick out outfits. She will ask me every day if we are going. She will get up and dressed that morning with (relatively) no pushback, and she will be impatient to get there.

Once we arrive, my cousins will surround her, take her into the house, and for three hours she will be engaging and engaged with everyone, laughing, telling stories, and eating well. She will be radiant and happy.

As I watch and reflect on everything we’ve been through, the question comes to my mind again: is this her or is this the disease? To see such a significant shift in Mom’s personality, to have friends and family come up to me and say, “she looks great and she’s so happy.”

My therapist shared some wisdom from another client:

Be grateful for the relationship you have now, even if it’s the one you thought you should have always had.

You’ve done everything for her these past 30 years to give her a good life. You will bring her through some of the most difficult days. And while we don’t know how much more of this journey we have to go, you will be okay—more resilient and wiser for the experience.

With love,

Kerri

The Closing Rapid Fire Questions from Victoria:

‘Courage to me is... ’

Being scared and doing what’s right anyway.

Thinking of someone you admire/respect, name three of their standout qualities/characteristics. [Those qualities we admire in others? — They’re usually the values we elevate over others. They are the ones we aspire to because we hold them in high regard.]

My 95-year-old friend Johanna.
Determination to make the world better
A gratitude practice in the face of all adversity
A killer sense of humour, even at 95

A prompt for readers’ discussion

How do you maintain empathy and patience when a loved one lashes out, and what strategies help you remember that “it’s the disease”?
Have you ever found yourself in a caregiving role you didn’t anticipate? How did you manage the transition from your “normal” relationship to becoming a care partner?

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

'The Light We Carry' By Victoria

Victoria — Thu, 25 Dec 2025 09:30:16 GMT

The ‘Letters from a Caregiver’ Collaboration series continues with this article, the seventh letter of the Winter 2025/26 Season.

Previous letters, this season:

The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria
‘You Each Deserve Your Own Life’ By Jodi Sh. Doff
‘Relearning Hope In A Time Of Darkeness’ By Victoria
‘Having Compassion for Your Earlier Self’ By Anna Du Pen
“Grasshopper, you are the expert” By Sarah Coomber
‘You Published Your Book! And Now What?’ By Cindy Martindale

Hello, dear Friends! A warm welcome to the new Carer Mentor subscribers.

If you’re new to Carer Mentor, you can learn more about me through Who Started Carer Mentor and Why?

Dear Friends,

Merry Christmas! I hope you’re having a good day - whatever that may look like for you.

I was going to share Christmas pop classics, or some Michael Bublé, but this is the playlist I’ve had on repeat the last couple of weeks: Relaxing Christmas.

Some may call it melancholic. I call it ‘helping me steady my breathing and sustain my calm.’ - a personalised ‘downregulation’ tool.

If you’re not familiar with downregulation I recommend reading this ‘How to Down-regulate in Times of Emotional Distress’ :

we can intentionally practice activating our parasympathetic nervous system in order to slow our heart rate and adrenaline production, allowing us to relax and regulate. Breathing practices, humming, and other grounding practices stimulate the vagus nerve and help us regulate our emotions.

Yep, try humming for a couple of minutes non-stop. It works.

Mum and I have much to be thankful for this Christmas, yet my heart aches for friends. Do we learn to carry the paradoxical feelings more easily with each year? I’m not sure.

I hope to keep hoping. I want to see the light amidst the dark. So, I keep reminding myself to stay open to what appears.

In today’s letter, on Christmas Day, I hope this brings you some light, nostalgia and warmth.

Author’s Bio: I’m Victoria, based in the UK. I resigned from a ‘big’ corporate job to help my Mum care for Dad until his passing in 2020. Now, I offer my couple of decades of leading global teams by mentoring business clients around my main priority—caring for Mum. A tragic twist liberated me from the societal definitions of ambition, and I’m living my bespoke version of thriving. ❤️

I launched Carer Mentor on my father’s birthday, the first without him in 2020. I started this fifth incarnation of the Website on Substack in October 2023. Thank you for being here!

The Light We Carry

Dear Victoria of the late 70s

Hello, little one. Don’t be scared. You. Me. We’re each other.

[Opening my arms, you approach tentatively at first, then we fiercely hug each other]

Your shiny halo over your pudding bowl haircut is gleaming in the light. Jet black, smooth as silk, not a thin, white thread in sight. The young girl stares at me, sideways, cheekily, full of questions.

“Did you get newsprint on your bottom again when Mum was cutting your hair?” We giggle, nodding at each other knowingly. I’d wiggle as Mum cut around the bowl (literally), and short spikes of hair would get everywhere.

She’d lay the broadsheets down in front of the TV. I’d sit cringing, obediently waiting for the snip snip to end.

I remember being an avid TV addict, lying with my head in my hands a couple of feet away from the huge brown box.

Sometimes I’d have my plastic tray with plasticine colours in front of me, creating animals or pots. Other times, I’d have my pencil cases stuffed with colours and a big sketchbook out, drawing whilst the cartoons played. (Remember these?)

Sitting with younger me, I remember how creative I was. The ‘Etch a Sketch’, ‘The Sketch-O-Graph’, ‘Spirograph’. Creating patterns and making up stories. I used to record myself singing using Dad’s old tape recorder.

‘What are you listening to on your tape recorder today, hon?’

‘Whistle Down The Wind.’ Ahh yeah.

‘Do you have your black case with records in it?’

The image is an album cover, showing the animated characters of the ‘Water Babies’ A shark, eel, swordfish, lobster, sea horse and the water babies.

‘Durrr, of course..I play the ‘Water Babies’1 story the most, ‘The Rescuers’ is fun though. Those are the big records. I’ve got ‘Tiger Feet’ and ‘Give a Little Love, Take a Little Love’ (I just realised it was the Bay City Rollers, 1975!)

I can see my younger self, proudly announcing how grown-up I am in my taste of music. It’s sweet to see how eager and earnest I am. Yearning to grow up. Full of light and potential.

Stop poking me. Okay, okay show me your books. The little girl’s kneeling to pull out the big red journal book with the soft-padded, plastic front.

The familiar white bookcase is stuffed full. A simple wood, three tier structure, solid and sturdy. We can’t remember where Dad picked it up, but he did a pretty good job of painting it. He was never great at DIY; always better at doctoring!

All the Noel Streatfield books are lined up together, next to ‘The Chronicles of Narnia’, Alan Garner’s ‘The Owl Service’ peeks out and you catch sight of ‘Supergran’ by Forest Wilson, with its distinctive yellow cover. These were the days when I treasured book vouchers above all else. I remember my parents rolling their eyes when I chose to buy, the ‘Muppet Show Popup book’ over a ‘proper book’ one Christmas. There’s even the pale blue cover of Cinderella. Another popup with tabs that became worn with pulling and pushing, to see Cinder’s dress change2.

I watch you, presenting the different books to me. Excited and eager to please.

These were the days before Mum bought End Blyton’s ‘Malory Towers’ and ‘St Clare’s’ to convince you that going to boarding school would be okay. You’re still in the days filled with wonder, imagination and magic. The days when ‘Worzel Gummidge’ changing his heads freaked you out, but you bravely pretended it was okay. I mean, isn’t that a bit freaky for a kid to watch!

But, today of all days, we can sit cross-legged together and talk about Dad. The days long before his first heart operation, when everything was carefree and light.

‘Hon, how was Christmas at the hospital this year’

‘Aww you know the same old, same old…’ Little me, isn’t overly impressed and slightly bored with having to talk about going to the hospital with Dad when there’s so many other things she wants to show me.

“Dad got his funny apron, you know, the one that looks like it’s got the kilt and ..sporan thing on it, and that big chefs hat with gold tinsel on it. We went SOooo early this time. He wanted to see the three different wards and had some patient checks.”

“Don’t you like it?”

“Well, I guess so. I lost count of how many times people said, ‘how you’ve grown’ but I know the matrons and some of the nurses so it’s okay. They give me those stockings of sweets and games. It’s nice of them, but I guess they kind of have to - it feels awkward and weird most of the time”

Image of a Cadbury’s selection box circa late 1970s. It had a plastic tray with different chocolate bars in it and sometimes a colouring card.

The image shows to mesh stockings with a cardboard label, that’s stapled on the top of the stocking. They contain an assortment of small games and toys from Woolworths. For example ‘Jacks and crosses’ or ‘ball and cup’

“I don’t mind talking with the patients. Helping them open their Yardley perfume or Old Spice'. It’s always the same presents that the staff get for the patients. It’s nice to make the patient’s feel good. It’s horrible that they’re on their own in hospital over Christmas. Some of them have no visitors at all!”

It’s shocking to little me, that these frail people seem abandoned in the hospital. I can’t fathom the complexities of human stories that can surround a person. Nor, does it enter my young head that there can be simple practical explanations for them being alone. At that age, I’m not thinking about the context only what I see and feel in the moment.

“Still, it’s a relief when we’re organising everyone to sit at the lunch table together. When we’re pulling crackers, serving food and Dad’s carving the turkey, it’s like a big party. The radio’s on, people are laughing and the patients are happy.”

“Dad loves all that, making people laugh and making a fuss of the patients.”

“I’m not exactly happy with doing the after lunch toileting stuff, but the nurses usually do most of that, I just help wheel people around.”

I’m watching younger me, exude the carefree energy I’d forgotten about. I knew Dad was a ‘big deal’ being a consultant in the hospital, but I saw how there was a deep respect, not fear with the staff. Looking back on it all, I knew Dad was teaching me humility and the value of helping others.

In those early days, he role modelled how it’s possible to lead from the front, and still be part of the team. Mutual respect and teamwork was clear, especially when we were serving the nursing staff in the second round of lunch.

Perhaps, I learnt to enjoy trying to connect with strangers, right back in those awkward moments. There was always something, that could spark someone’s smile.

Simple pleasures, of presence, a little laughter and bringing light to others. Sometimes, Christmas doesn’t have to be more than that.

Sitting with younger me, I can see all the questions in her eyes. Big and bright. I can’t tell her she’ll be going far away to school in a few years. Even as we’re talking together she hears how different I sound to her. My accent’s gone.

It’s okay, hon. You have so many wonderful adventures in the future. You’re going to be fine.

Keep up with your music - don’t pull that face. I know you hate the piano lessons on Saturday. Yesss Noel Edmonds Multicoloured Swap Shop and Tiswas are cool TV programmes, but music helps you so much. You’ll even have a small band (her eyes grow wide with surprise) yeaaahh…but don’t tell Mum and Dad…you record a song for a friend in need, noooo not for money just an amateur thing but music will always be in your blood.

I’ve got to go now. Give me a big hug. Awww you give the best hugs.

Can you let Dad play all his classical music and test you? You know the different composers and the music styles thing? Humour him. You’ll remember these Sunday afternoon music sessions when you’re as old as me.

Love you sweet girl. You’re brave and strong, and we will have many beautiful Christmasses and blessings.

Don’t let anyone steal your joy or your light. Shine bright, dear one.

A prompt for readers’ discussion

What was the most memorable toy/gift you received as a child?

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

I’ve created a new space for us: Community Hub. Have a look around the introduction:

Charles Kingsley‘s classic 1863 children’s book, The Water-Babies: A Fairy Tale for a Land-Baby, a moral fable about a chimney sweep named Tom who transforms into a water-baby, learning lessons in nature and morality while exploring the sea, with popular editions featuring illustrations by artists like Linley Sambourne or Jessie Willcox Smith.

The album I had was the soundtrack to the 1978 film adaptation of the book

I was curious to see if I could find the fairytale popup book again. Eureka!

'You Published Your Book! And Now What?' By Cindy Martindale.

Victoria — Thu, 18 Dec 2025 07:42:22 GMT

The ‘Letters from a Caregiver’ Collaboration series continues with this article, the sixth letter of the Winter 2025/26 Season.

Previous letters, this season:

The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria
‘You Each Deserve Your Own Life’ By Jodi Sh. Doff
‘Relearning Hope In A Time Of Darkeness’ By Victoria
‘Having Compassion for Your Earlier Self’ By Anna Du Pen
“Grasshopper, you are the expert” By Sarah Coomber

Hello, dear Friends! A warm welcome to the new Carer Mentor subscribers.

If you’re new to Carer Mentor, you can learn more about me through Who Started Carer Mentor and Why?

It’s hard to believe next week is Christmas Day! Wowser.

I hope you and your loved ones are okay, or as stable and ok as they can be. This is such a tough time of year for many. So, I’m sending out extra hugs, warm wishes and strength to anyone that needs it (hand sanitised so we don’t pass on flu, Covid or pneumonia, which is rampant right now!)

Today’s letter is by whom I met this year on Substack. You’ll see that her letter is not directly about caregiving but about her personal challenges of writing a book about her caregiving experiences.

When I set out the collaboration brief, I wanted to ensure that everyone had the freedom to write about any personal challenge. We may be caregivers; that’s just one facet of who we are. It may be a very big or dominant facet, but it’s not our entire identity (although it may feel like that at intense periods of the rollercoaster-ing or crisis!).

I’m grateful to Cindy for sharing her writer’s wisdom and experience with her younger self in this letter.

You’ll see the challenges, weight and pressure Cindy has navigated to meet her own confessed high standards.

Cindy’s had a powerful desire and purpose to support ageing seniors and their family caregivers for a very long time. It’s inspiring to hear about how she strove to get her book published and into the hands of those who’d benefit from its wisdom.

I know several friends who may be seeking her book advice now!

Author’s Bio: is a writer and newsletter creator who shares her experiences as the primary caregiver for her parents and as a director in Community Senior Living. She consolidated her desires to help aging seniors and their family caregivers in her book, Graceful Last Chapters: Helping Seniors Who Need More Care, and in a weekly newsletter, “Smarter Caring, Smarter Living.”

Dear 2017 Cindy,

How am I talking to you from eight years into your future? Don’t be afraid, it’s really me, your future self, coming to you with so much love and support. Quite simply, don’t question how this window of opportunity through time exists. All I know is it’s possible for only a short time through the magic of Victoria’s Carer Mentor, found deep in the mystical United Kingdom. Let’s use our time wisely!

You, my dear younger me, did something quite remarkable two years ago, and I’m so proud of what you accomplished. With absolutely no help from anyone (except son Adam with the computer snags and snafus), you codified life events, twists, and turns of the past twenty years, retold salient pieces in your own voice, and turned it into a published book!

It was, of course, a book about what became your passion—care for aging loved ones and those who care for them—and it may please you to know that it still is my passion. You lifted bits of valuable material from loosely fenced-off memories, joys, tragedies, dreams, disappointments, and boundless hope to assemble a product for others: caregivers and aging seniors who might benefit from what you’ve learned from your experiences.

It was a dream you made come true… to one day write a book and share something meaningful to help others. You did that, all by yourself. You successfully became the definition of an Indie writer/publisher when Graceful Last Chapters: Helping Seniors Who Need More Care went public on September 15, 2015.

Was it quick and easy? No, it was not; it represented three years of your life and a commitment to uncertainty you’d never known before. Yes, your writing abilities saved you throughout your years in school and advanced education, but what about everything that goes into creating a book? The proofreading, editing, formatting, designing the cover, and all the minutiae that make a book saleable? That was new and all you.

Still, through the blood, sweat, and tears (in reality, no blood; minimal sweat but endless hours; and tears only when remembering the details of losing Mom and Dad), the message and assemblage of a book all came together and brought a sense of closure to a very long and sometimes painful chapter of your life.

The process was cathartic. It helped you heal, not only from the family losing Mom and Dad, but also from the trauma of your decision to quit two management positions in an industry, Community Senior Living, you loved. It helped unlock and reframe events, turning them into useful learning tools. So, that was a good thing, right?

And now we’re getting to the main reason I’m writing to you, 2017 Cindy, two years after publication. By 2025, the year from which I’m writing to you, it’s been ten years since the book’s release, and my perspective is different from yours. I’ve got the long view, and I want to share some thoughts—with all the love and support I can wrap into each sentence.

During the ten intervening years from publication to 2025, I’ve had the luxury of time to think, dissect, and question our viewpoint of family events and the career decisions we made. I’ve asked, time and again, whether the truths we captured and internalized are correct, both when the book was published and years later. You’ll be happy to know, I think it was.

The reason for the pondering is that I know you. You’re me, simply a younger version. And I know you, the 2017 version of me, still carries disappointment and feelings of failure about Graceful Last Chapters.

Don’t try to wiggle out of it—the book definitely feels less than an accomplishment and more like some weighty baggage you’re dragging around, doesn’t it? I know it does. I’ll even go so far as to call a spade a spade: you’re disenchanted with writing in general.

In fact, you’re not writing at all. And you’re looking for other ways, money-making enterprises (or at least that’s what you say out loud), to earn a living other than by writing.

I’m sorry, I know I’m being a little rough on you by calling out the hard truth. But I think it’s time to try reframing some of our misaligned thinking.

1. I know you remember being called a “perfectionist” on occasion, and it generally offended you as an unfitting accusation. However, in the time between where you are and where I exist, I’ve given the label serious consideration and see the truth in it. You and I hold ourselves to extremely high standards of completion in everything we do, and we’ve occasionally tied ourselves in complete knots. I’ve come to understand that we need a measure of elasticity in what we expect of ourselves. It’s simply a healthier way to live, and I want you to try adjusting your demands on yourself very soon, my dear one.

You won’t see slippage in the quality of whatever you’re trying to do. I can guarantee it, as I know your version of good enough is better than most and more than good enough.

2. Now, I want you to try going back to your book’s publication and apply relaxed expectations to the outcome. Let’s look at what we know.

You spent a fortune on getting your manuscript printed as a book and distributed for sale, but there were few options available for Indie writers. Kindle Direct Publishing (2007) was available, but only for Kindle; paperbacks through KDP didn’t start until 2016, with hardbacks in 2021. You paid for what you wanted, the cost of doing business. It was your choice, and you made it.

The problem became that the money pot was pretty close to empty when it became time to market the book. No marketing, no visibility. But you did what you could: exchanging book copies for reviews, PR announcements, newspaper articles, a radio show, and even Newsjacking to position expertise by tying into news events.

There’s no fault at your feet; you did what you could.

3. It’s really all about the number of books that sold, isn’t it? You wanted to help more seniors and their caregivers and, at the same time, see your standing as a writer validated. Two wishes, and neither truly came through for you.

No, it wasn’t a New York Times bestseller, far from it. In truth, though, Graceful Last Chapters is not the kind of book that ever receives that type of recognition.

And last but not least, Reader Comments and Recommendations. Did you really absorb and process what your readers had to say, or did you just count how many of them were there? Look at these:

❖ It is rare to encounter such an obviously experienced counselor in the field of Senior Care as Cynthia, who, on every page of this impressive and ultimately authoritative guide, demonstrates such tenderness, calm, and candor.

❖ Having read many resources on care for seniors and worked with families with caregiving for seniors, this reviewer considers Cynthia’s book a Bible– kind, intelligent, informative, patient, and humanitarian. It is an award-worthy accomplishment and a must-read for everyone.

❖ Reading this book is like sitting down for coffee with a good friend—a good friend who also happens to have decades of experience working in elder care and who supervised the care of her own aging parents.

❖ This book captures not only the practical information on choices for seniors, but also the tougher emotional side of caring for loved ones as they age.

❖ Throughout the work, Cynthia Martindale focuses on understanding the aging individual and on meeting their needs in a meaningful, caring way. She also acknowledges the feelings associated with being a caregiver - the frustration, fatigue, pain, etc - and shares her insight on how to deal with those emotions and take care of oneself while still providing the best care for your loved one.

❖ This is the book my brother and I wish had been available years ago when our own parents needed increasing care. I cannot give “Graceful Last Chapters” enough superlatives.

Wow. Just Wow. These reviews are remarkably full of superlatives and indications that Graceful Last Chapters not only touched your readers deeply, but it also helped them learn points of navigation within the somewhat forbidding and unknown world of Senior Care. Your job is done.

You are a writer, a published author, and an expert in Community Senior Living and Caregiving, who writes about helpful approaches and knowledge for those exploring the boundaries of care for someone they dearly love.

You did it, and you are what you wanted to become for a very long time, a writer who writes.

Our time together is dwindling, but I have one more thing to share with you. In my time, 2025, I am a full-time writer about the seniors and their caregivers who mean so much to us. It’s challenging but also incredibly rewarding to hear from readers that what I write seems directed to them personally, and they thank me for my content. I write on a digital platform that doesn’t exist yet in your time, but it will. It’s all about building a community of supportive readers who “get” the exhaustion and frustration of (for me and my newsletter) other family caregivers. Very cool, and you’ll love it. Get ready.

If I may, please consider dropping your search for online roads to riches that don’t involve doing what you do best, writing. When I look back on the years between you and me, I regret very little. But I do realize the “lost years,” where you are now, add nothing from the exploration except the loss of some money to try something new, yet bring nothing that moves the needle forward. Think about it. Please.

Lots of love and long-distance hugs to you, your wonderful guys, Gary and Adam, and of course, kitties Scarlett and Franklin, who rule the house. Maybe consider a little cushion for Scarlett on the step at the bend in the stairs where she looks out the window at trees, squirrels, and birds? She’s getting older, you know, and her legs might get tired standing to see outside. What do you think?

With so much gratitude for our time together today (and for the magic of the UK’s Victoria Carer Mentor) — All my best,

2025 Cindy

The Closing Rapid Fire Questions from Victoria:

Fill in the blank: ‘Courage to me is
Courage, to me, is doing the right thing: the inability to think about yourself in the situation and to focus entirely on someone else who needs your help.
Thinking of someone you admire/respect (friend/colleague/well-known person), name three of their standout qualities/characteristics

In addition to loving Gary, my husband of 48 years, I also admire and respect how he’s moving through several tough diagnoses. He’s currently in remission from cancer of his adrenal glands and Stage 4 lung cancer. However, after prostate cancer in 2000 and implantation of radioactive seeds, he’s been clear for twenty-five years until a few weeks ago. He’s also right next door to end-stage renal failure. Despite all this, he’s like the Energizer bunny—he just keeps on keeping on. He is still working an almost 40-hour week and somehow maintains his usual disposition as he continues to do whatever he wants. It’s amazing. And I honestly believe anyone who didn’t know about his health concerns wouldn’t see a difference from the man they’ve always known. I admire his tenacity and respect his right to do as he pleases for as long as he can. At this point, he refuses to give in.

What’s one quote/movie/book that’s inspired you?
“Pintimento: A Book of Portraits”, Lillian Hellman
Pentimento: A Book of Portraits is a 1973 book by American writer Lillian Hellman. It takes the form of an autobiographical work, focusing on “portraits“ of various people that had effects on the author throughout her life.

A prompt for readers’ discussion

Have you (or someone close to you) ever experienced some “lost years?”
Let’s loosely define them as years when we’re busy doing things that may look productive, but we’re actually avoiding something that feels like failure and not moving forward. What happened next?

Please ‘❤️’ LIKE the article & consider subscribing!

Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.

Subscribe now

“Grasshopper, you are the expert” By Sarah Coomber.

Victoria — Thu, 11 Dec 2025 08:29:43 GMT

The ‘Letters from a Caregiver’ Collaboration series continues with this article, the fifth letter of the Winter 2025/26 Season.

Previous letters, this season:

The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria
‘You Each Deserve Your Own Life’ By Jodi Sh. Doff
‘Relearning Hope In A Time Of Darkeness’ By Victoria
‘Having Compassion for Your Earlier Self’ By Anna Du Pen

Hello, Friends and a warm welcome to the new Carer Mentor subscribers.

If you’re new to Carer Mentor, you can learn more about me through Who Started Carer Mentor and Why?

Today’s letter is by . We first connected on this Substack platform in late 2023 when Sarah was sharing her journey caring for her Mom, who had Dementia. I knew she was juggling a lot as part of her Sandwich Season (I always think 'grilled' like a panini would be a better analogy!). I now have a deeper appreciation for everything she managed while caring for Max, starting in 2008.

As caregivers, we may second-guess ourselves and defer to trained experts. Sarah underscores how we know our loved ones the best.

I remember anticipating Dad’s needs before he needed to ask for something, and I could see when he was especially unwell and needed something. I grew my confidence to advocate for him and us in emergencies. But early on, I assumed the experts would know better than me… so I deferred to them.

I don’t do that now, even if there is an unspoken expectation to do so. This is where we take on more burden and responsibility as caregivers—and it’s often how we find the most appropriate care for our loved ones.

Thank you, Sarah.

Author’s Bio: Sarah Coomber is a Minnesota-based writer, writing coach, communication consultant and yoga instructor. She currently writes Sandwich Season, a weekly Substack about caring for her aging parents and young adult son. Sarah is the author of The Same Moon (Camphor Press, 2020), a memoir about how running off to Japan for two years helped her find her way home.

“Grasshopper, you are the expert”

Dear Sarah-of-January 2008, Washington state, USA,

I recently gave a piece of unsolicited advice to a young father. I had never met him before, so it surprised even me that I would do this.

But when I learned he had recently adopted an infant son, I couldn’t help myself. I walked up to him and said:

Never forget that you are the expert on your child.

Really, I was speaking to you, Sarah, thinking back to your situation in January 2008.

You won’t yet understand why I’m sending you this advice, because you are just on the cusp of adopting 3-year-old Max and becoming a mom. What you don’t yet realize is that being Max’s mom means you will also become his caregiver and advocate.

You’re entering this new chapter fatigued from dealing with mounds of paperwork and all manner of officialdom. That’s what it takes to adopt a toddler from India.

I know you’re thinking that parenting Max will be easier than the preparations. You feel so much love for this little guy that you’ve only seen in photographs. Your heart is full to bursting.

Oh, Grasshopper, I wish I could tell you that all you need is love. But I think even you have a bit of Spidey sense that it will take more, much more, than that. What you have been through so far—not just preparing for adoption but other challenges you’ve faced in life—is minor compared to the journey on which you’re about to embark.

Before I go on, hear me: You are going to make it through. Remember, I’m writing to you from 2025—and you’re still vertical! Still married! Still a parent! And—plot twist—in addition to being a writer, you are now a yoga instructor. (Because, believe me, you will need the yoga.)

But life is going to get hard. You’ve heard of adoption honeymoons, where the first six weeks or six months or whatever are lovely, and then challenges arise. For you, there will be no honeymoon. It’s going to start hard on Day One and stay hard for a long time.

You are not going to understand your son. You will not know how to motivate him, how to calm him, how to console him, how to redirect him. You will struggle to figure out what makes him tick in every way.

You will pull out every trick in the disciplinary book, the one by which you were raised. You responded well to a stern look. A few sharp words. The silent treatment. The occasional shout. Guilt trips. The rare but impactful slap to the cheek.

But as a child, you were born into a safe, loving home. You had everything you needed and then some. That gave you the bandwidth to want to be “a good girl” and to be successful. Not to say it was all easy—it wasn’t—but your people-pleasing ways helped your childhood go relatively smoothly.

Max’s life started so differently from yours. His agenda to date has been survival, and it’s hard to let that go. You will find his strategic default is set to resistance and control.

You will spend days on end holed up with a toddler throwing tantrums. You’ll wonder at first if they are seizures, because in all of your years of family gatherings, babysitting jobs and work as a camp counselor, you’ve never observed a real tantrum.

You will spend days holding Max as he flails, hollers and screams, so he won’t hurt himself or you or the house. You will start timing his tantrums and find that some days you’ve spent four hours in this state. Your arms will hurt. Your ears will hurt. Your whole body will hurt. You will be frustrated beyond all measure. You will yell. You will threaten. You will sing. You will pray. And I am sorry to say it, but in your desperation, you will even try spanking. (It didn’t help.) You will finally learn to put in earplugs.

When you talk to other parents and professionals, they will offer lots of advice:

“Have you tried sitting him in a corner?” (Tell them, “You try.”)

“Be patient, he’s just settling in.” (Tell them, “Months/years have passed, and we seem to be stuck.”)

“Just let him be. He’ll be fine.” (Tell them, “That is a recipe for chaos, and it’ll take way more work to put the genie back in the bottle.”)

Here’s the truth: You’re going to spend years serving as Max’s external regulator. Like an external hard drive stores data, you will help him hold and regulate his emotions.

And you’ll spend decades as his advocate, seeking help and answers, asking questions, making requests, implementing strategies. You must learn to live by the Japanese proverb: Fall down seven times, stand up eight.

What no one has told you—maybe what nobody yet knows (or do they?)—is that Max’s brain is not like the average bird’s. He has disabilities and challenges related to learning … settling into a family … settling into social situations ...

Max won’t talk for a long time, but don’t worry. You’ll find he has a wonderful sense of humor. And he will sing with a voice that spans octaves. And he has fabulous color sense. And curiosity. And energy. And empathy.

You will come to realize that Max’s brain is beautiful in its own way—it just doesn’t conform to expectations. And he doesn’t seem to care.

But, trust me, eventually he will start finding his place in the world, and you will experience joy like you never imagined.

I could share with you the many paths you’ll go down, looking for ways to help him learn and fit in. But mostly I want you to remember this:

You are the expert on your child.

I know you’re thinking, I’m a first-time parent. I really don’t know what I’m doing.

Look, nobody knows what they’re doing. There is no dress rehearsal for parenting. No trial child. No control child—let’s try this technique on Child A and that technique on Child B and see which is more effective. No, there is only the main event, and you are days away from taking your position on that field.

You’ll be surrounded by armchair quarterbacks, people who think they know how to parent your son. You know the type. (I hope, Sarah, that you’ve kept your parenting advice for others to yourself.)

You’ll seek help from professionals—doctors, teachers, social workers, psychologists, therapists, adoption groups, alternative health practitioners. They’ll offer potential diagnoses. They’ll offer treatments, suggest books, and lifestyle and parenting strategies.

But you’re the only one who will be able to predict whether these suggestions will work for Max. Pray, listen and make a decision.

I’ll say it again: You are the expert on your child.

You were raised to be polite and diplomatic. That’s how you’ve gotten along in your family. It’s how you’ve moved through the world. Be ready to use this hard-earned skill to your advantage.

Because to help Max navigate his new world—medically, educationally, socially—you’re going to need to be persistent to the point of being fierce. Yes, fierce. And people accept fierce better when the person delivering the message or demanding answers is doing it while being … nice.

A mentor of yours will pass out cards describing participants in a yoga class around 2018 and will select this one for you: FIERCE. You will tell her it’s a mistake, but she will look at you knowingly and assure you that this is what she sees. She will give Max one that says “GENTLE,” or something like that, and you will think, “What the heck?” Later you’ll realize she was onto something.

Why will you need to be fierce? Because at every turn you will encounter people who will try to convince you that they know better than you what your child needs.

Some of them might know or understand him better than you in certain areas. But you will know the whole of Max better than any of them.

So don’t buy into the idea that you aren’t the expert, just because you’re a new parent and you don’t have a degree in child development, neurology, medicine, education, social work, physical therapy, occupational therapy, speech or dietetics.

Or because you don’t know his genetic background.

Or because you don’t know what Max experienced in his first three years of life.

You will spend more time with him than any other person in the world. And every moment you’re together, your brain will gather data on his. Your heart will gather data on his.

Observe, pray, listen and trust yourself.

You are the expert on your child.

Here’s a small preview: Soon after you and Jon return from India with Max, his doctor will tell you that his stool sample came back clean. You’ll say great … and you’ll request deworming medication anyway. (Look at you, listening to your gut, trusting yourself!)

The doctor will resist—The test shows he’s fine. But you will insist. Finally the doctor will shrug and hand you the prescription, OK, Mom, if it makes you feel better.

A few days after giving Max the pills, lo and behold, you will encounter an enormous worm, still wriggling! You will report this to his doctor, but he won’t care that you collected it. He won’t want to see it. It’s OK. You got the job done. And, by George, you do feel better!

I don’t want to spoil all of the surprises, but please remember what I’m telling you: Follow your gut, follow your hunches.

You are the expert on your child.

You might be wondering, Where is Jon in all this? Good question. When you return from India, he will be plunged into the most intense work period of his life. I’m sorry to tell you this, but just forget about your dream of equal opportunity parenting or anything along those lines. To keep the company he works for afloat through the coming housing crash, he will need to be at work from early in the morning until late at night and on many weekends too.

You’ll feel as if you’ve lived weeks each day, waiting for Jon to arrive home. And when he opens the front door, Max will be ready to play nicely (mostly). Jon won’t understand why you are so overwhelmed. You will dub Jon “Special Guest Daddy.” Because Max will save his best behavior for Dad.

When you suggest trying a new therapy or taking Max to see a specialist, Jon’s first question will be, “Does he really need that?” Because being away so much, he won’t see what you are seeing, and he won’t be the one doing the research. When you press the matter, Jon’s second question will be, “How much does that cost?” You will want to say, My sanity, man! Forgive him for not knowing what you know. And wait.

Because in 2015, seven years into parenting, you will trade roles. You will go back to work full time, and Jon will pull back to working part time. He will become the primary parent. And he will develop a new understanding. Then, when you suggest a new type of therapy or parenting strategy, Jon’s first question will be, “When can we start?” Because he too will become an expert on Max. (Try not to say “I told you so.”)

Does it all sound exhausting? It will be exhausting. Your first therapist will tell you, This is not a sprint but a marathon. Listen to her. (You won’t.)

But you will be OK—remember, I’m writing to you from 2025! Over time, you will see that you were meant to be Max’s mom. You will never (well, mostly never) regret undertaking this role.

Becoming Max’s mom will change you in ways you could never have expected. You will lose friends you thought would be there forever and gain ones you can’t imagine living without. Your career will end up a bit of a hodgepodge, but you will make peace with that.

What you value will change. Who you value will change. What you learn will heal you and your relationships. You’ll sacrifice the life you imagined. But in the process, you’ll find redemption and a sense of purpose.

So take the reins, Grasshopper! Trust yourself. Be the expert. Be fierce and kind! Love and nurture (and research and advocate …) that little boy into health and hope. You can do this. You will do this.

With love,

Sarah, December 2025, Minnesota, USA (Oh—surprise! You’ll move Home, but not for a while yet … and it will be good.)

Discover more of Sarah’s writing, for example, “2 things that kept me in the parenting game”, an article that connects with the letter.

The Closing Rapid Fire Questions from Victoria:

Fill in the blank: ‘Courage to me is … persisting when the way forward is unclear..’
Thinking of someone you admire/respect (friend/colleague/well-known person), name three of their standout qualities/characteristics

My friend and neighbor Jill Kandel. She is persistent, creative and welcoming. Around the time my family moved back to Minnesota and into her neighborhood, she experienced an acquired brain injury. She has spent the past several years pursuing treatments and learning to live in new ways. Meanwhile she has been a font of creativity—writing a book about her injury and recovery experience (manuscript now complete!), painting, knitting and gardening, all while learning how to live with a brain that functions differently than it did before. In addition, she welcomed me, a newcomer to her neighborhood, into her garden, her home, and her book and writing groups. Now she and her husband are dear friends of Jon, Max and me.

What’s one quote/movie/book that’s inspired you?
Proverbs 3:5-6 (ESV):

⁵Trust in the Lord with all your heart,
and do not lean on your own understanding.
⁶In all your ways acknowledge him,
and he will make straight your paths.

This might sound contradictory to the advice I offer above. But this is my life verse, and the most important part for me is that first phrase: “Trust in the Lord with all your heart.” This verse helped me keep going as Max’s mom at the times when everything in my little human mind said, “Cut and run!” “Give up!” “This is impossible!” I’m not sure my family’s path has been exactly straight, but maybe it is from God’s perspective.

A prompt for readers’ discussion

“What is something—small or big—you accomplished that you didn’t think you could do?”

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

'Having Compassion for Your Earlier Self' By Anna Du Pen.

Victoria — Thu, 04 Dec 2025 08:07:23 GMT

The ‘Letters from a Caregiver’ Collaboration series continues with this article, the fourth letter of the Winter 2025/26 Season.

This season’s letters:

The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria
‘You Each Deserve Your Own Life’ By Jodi Sh. Doff
‘Relearning Hope In A Time Of Darkeness’ By Victoria

Hello, Friends and a warm welcome to the new Carer Mentor subscribers.

If you’re new to Carer Mentor, you can learn more about me through Who Started Carer Mentor and Why?

It’s hard to believe that it’s December! On the other hand, I feel its weight.

I hope last week’s letter offered a reframe of hope that you could embrace. So often, we can feel bad about providing ourselves compassion when others are suffering more. Our inner critic can trap us into a shame spiral or guilt us into disqualifying our own pain.

I’m glad I saved the great resources I discovered over the years. It was cathartic to listen again to Dr Brené Brown’s ‘Unlocking Us’ podcast and Dr Maya Shankar’s interview with Jamil Zaki on the ‘Slight Change of Plans’ podcast.

I’m especially grateful to Ai-jen Poo for organising CareFest [November was Family Caregivers’ Month in the US]. Each session’s video is being uploaded to the ‘Caring Across Generations’ YouTube channel (click here). I was inspired by ‘On Hope with Alicia Menendez, Krista Tippett, Tarana Burke, and Jane Fonda.’1

I couldn’t have foreseen how writing letters to our younger selves could provide so much compassion and insight for ourselves today.

There’s something liberating about communing with ourselves—someone who’s been with us inside and out. But also knowing it’s being received by others who truly see us, who can benefit from our lived experiences. For me, these letters are turning out to be the prompts that I didn’t realise that I needed!

This week’s letter is by Anna Du Pen, whom I met in early 2024. This is one of my favourite articles that she wrote about herself and Stu, her husband, who suffered with Alzheimer’s: “Gratitude Graces Loss. Unconscious Intimacy”

Anna writes Betwixt and Between Proxy.

Betwixt: Love, sorrow, and anger twisted up so tightly that you cannot think straight. It forms insidiously and tightens over weeks to months as your life divides itself into before dementia and after dementia.
Proxy: Durable Power of Attorney for Healthcare. Where your duty is to put your loved one’s wishes above your own. (From her About Page)

Author’s Bio: Anna Du Pen is a retired Palliative Care Nurse Practitioner and volunteer for End of Life Washington. She cared for her physician husband who died of Alzheimer’s Disease in 2023. She is also an APOE4 carrier herself. Anna writes on betwixtproxy.substack.com on being a medical decision maker for someone with dementia and related topics.

‘Having Compassion for Your Earlier Self’

Dear 2022 Anna

It is hard to imagine how you survived those two hospitalizations near the end of Stuart’s Alzheimer’s journey. I know those memories leave you second-guessing. That somehow, you should’ve made different or better decisions.

If I could be there with you in 2022, I would hold you tight. Tell you what, a great job you did under soul-crushing conditions. You never lost sight of your core mission—to take the best possible care of Stu. You clearly adored him, even when his diseased brain took him to dark and humiliating places.

In that moment on the phone when you got the call Stu was having signs of a stroke, you knew a stroke was an acute event. Data popped into your head. Eighty percent of strokes are caused by clots, the other 20% by bleeds. Once they ruled out a bleed, a clotbuster, given in a short window of time, would give him a good chance of being back to “normal.” Your daughter-in-law, Marie, asked if she should call 911. After the slightest hesitancy, you said yes.

At the time, he still knew you, still enjoyed dinners with the family, you still worked on jigsaw puzzles together, and he still held you in his arms at night.

I know it is easy for me to see that from three years out, but it was the right call.

By the time you got to the house, four big guys from the fire department had crowded into the mother-in-law apartment you remodeled in your son’s tri-level home. The medic was on the radio to the local ER and had already given him aspirin. You pointed to the POLST form on the refrigerator, indicating no CPR. The medic asked both you and Stu if you wanted to go to the ER. You both said yes. Your nurse spidey-sense and your husband’s gut response were synchronized as was often the case in your relationship.

But you had a friend who was an ER nurse, so you knew staffing issues from COVID persisted. But that was just background noise. You were focused on Stu. He had that frightened and confused look in his eyes that broke your heart. Plus, there was no way you could have foreseen what would happen once the two of you were on the healthcare system conveyor belt.

Coming in by ambulance as a suspected stroke, he was taken back directly, bypassing a crowded waiting room. The ER doctor came in shortly to examine him and found all his stroke symptoms had resolved. The aspirin had worked! You felt like you could breathe easier.

He was sent to the CT scanner, where they confirmed no bleed. And because the symptoms resolved, no need for the clotbuster. What happened next plays out in your head as a missed opportunity to rewrite the story of Stu’s last days. The doctor came back and recommended an ultrasound of his carotid arteries since he was “already here.” As if that choice was offered as a convenience.

You so wish you would’ve taken him home at that point in the story. But hindsight is 20/20, and that kind of magical thinking is rarely useful.

Stu was foggy at that point which is common after a transient ischemic attack. You tried to follow the logic of the recommendations in your nurse brain, while bending that logic toward helping your husband be okay a little bit longer. It was the job of the professionals in the room to coordinate the treatment plan, incorporating what was important to Stu.

Did the ER doc give a thought to whether Stu would want to do anything about it if there was a problem with his carotids? Probably not. After all, it was the next thing on the stroke algorithm. Did you think two or three steps ahead on that algorithm? No.

And you ask why not?

Oh Anna, it’s so easy for me to see why not in 2025. You were exhausted from full time caregiving and trying to hold down a part-time job to keep health insurance. Overwhelmed with relief that the symptoms resolved and that he wasn’t going to die that day. The situation so consistent with the rollercoaster emotions omnipresent for dementia caregivers, on the heels of relief came the scary news that one carotid was “completely blocked” and the other “80%” blocked. The ER doc recommended a consult with the vascular surgeon. He explained these blockages were managed with non-invasive stent procedures, not big open surgeries.

There was no conversation focused on other options. But from where I sit now, the emergency had passed, and it was clear he had developed collateral circulation (blood vessels that detoured around the blockage). Meaning that the doctor could have discussed that he was at high risk for a stroke, but perhaps he could be put on an aspirin regimen and rely on the collateral circulation to do what it had clearly been doing for years.

More glaring was that there was no hint of recognition that Stu’s major medical condition was Alzheimer’s Disease, well into the moderate stage. That should have triggered the need for the critical but difficult discussion around goals of care. The very clinical skillset you practiced at the bedside for years.

HOW COULD YOU NOT BRING IT UP AND ASK WHAT THE OTHER OPTIONS WERE?

Because that was not your job! That was the doctor’s job!

Stu’s medical records were at his fingertips. That was one of the reasons you selected his primary care doctor from the organization that ran the hospital. At the very least, he could have given the two of you the option to follow up with the vascular surgeon as an outpatient.

But the conveyer belt was in motion. Stu was seen by a kind vascular surgeon who reassured us that the procedure was safe, and he was admitted to the hospital. After Stu settled in, the nurse came in and said you would have to leave because visiting was limited to one person per day and 4 hours max. Her young face was lined and pale, as if she had been without sleep or sunlight for days. You just stared at her.

The sounds in the hallway seemed to mute. The staff in white coats passing the doorway moved in slow motion. The density of the air moving in and out of your chest felt thick. You felt light-headed.

Somehow you managed to say, “but my husband has Alzheimer’s,” before tears began to well up. Seconds passed as you struggled to push through.

“I can’t leave him overnight. He will get confused and try to get out of bed. He has been falling at home because he forgets to use his walker.” Pain now danced across your forehead.

“We’ll take good care of your husband Mrs. Du Pen. I’m very sorry, but these rules are mandated by the state,” she said.

HOW COULD YOU NOT REMEMBER THAT COVID PRECAUTIONS WERE STILL IN PLACE?

You were in survival mode, that’s how. The fight or flight response, but let’s just add on physical, mental, and emotional exhaustion. Not only was adrenaline being pumped into your system, but the overwhelming exhaustion inhibited your ability to think straight.

Despite all of that, you were able to make the case to the nursing supervisor that there was not enough staff to prevent Stu from falling in his confused condition. That you were an RN fully trained in COVID precautions and it was clear there was not having enough staff to keep him safe. They caved, but only after you had the physician write an order in the chart.

What followed was a week-long hospitalization. The surgeon only did the procedure one day a week—Thursday. He was admitted on Monday. You slept on the hard windowsill in his room and got dirty looks from the staff. “His wife’s a nurse,” they would whisper.

After the stent was placed, he went on blood thinners—which must have been discussed but you have no memory of that. Three weeks after he was discharged from the hospital Stu had a GI bleed which led to another weeklong hospitalization.

Stu suffered steep downhill slides in cognitive and physical functioning after each hospitalization.

He would not have another vascular event, but the Stu who came out the other side of those two hospitalizations had far more bad days than good. You blamed yourself.

Oh, honey. From where I sit now, you were amazing in an impossible situation. Here’s how I see it. The culture around dementia care was at work in the hospital—look away because it’s too hard to talk about. The distress dementia caregivers experience with anticipatory grief amplified by the heavy burden of responsibility was and is paralyzing. Top that off with three decades not being even close to enough time to live the extraordinary love story the two of you forged together.

Despite all of that, and against all odds, you manifested his last wish—to die at home and continue sharing a bed with you because the most important thing in the world to him was you.

You did great!

The Closing Rapid Fire Questions from Victoria to Anna

Courage to me is..
Courage to me is remaining focused on what’s most important, while cutting yourself some slack when you inevitably lose that focus from time to time.
Thinking of someone you admire/respect, name three of their standout qualities/characteristics
I would have to say my mentor, Dr. Stuart Farber, the former Director of the Palliative Care Team at the University of Washington Medical Center. He had a gift for listening. At the bedside of people with dire illnesses, he would ask open-ended questions and wait for the answers, allowing awkwardly long pauses, but that’s where the magic often happened. Second, he was a natural educator. His favorite target were young medical students—so hungry to learn and not yet jaded by the health care system. He wanted to instill a reverence for compassion in them. And finally, he taught all of us that worked for him not to let “the work” consume us. To find balance, as he did with his lovely wife whom he adored. To take the wins which were always at the bedside, while not raging too much against the system where change happens slowly but steadily.
What’s one quote/movie/book that’s inspired you?
That would be ‘One Day at a Time’. There were many days as a caregiver where I only hoped to make it to the end of the day with my sanity intact. Every evening when found myself and my loved one tucked in for the night, I would reassure myself I could also do the next day. And then the next.

A prompt for readers’ discussion

How do you practice self-compassion?

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

On Hope with Alicia Menendez, Krista Tippett, Tarana Burke, and Jane Fonda.

Some notes from the video:

Hope is a muscle, a practice, not idealism or optimism. ‘Muscular hope’ is active imagination with real-world consequences.
Hope isn’t an individual thing; we can’t carry it alone. We need to share it when it becomes too much to carry alone.
Hope’s been used too flippantly, as an afterthought or passive ingredient to plans. Hope may be the last ingredient after organising everything else, but it’s the activator, the ACTIVE ingredient. It’s the catalyst, the engine, to ignite it all.
We can’t change the world without hope, love and care. Hope is a defiant act and a choice

Krista Tippett at 39 mins: “if you look at the professions that were deemed essential almost all had something to do with the giving of care and they are almost all the the the work that we least reward and value. And one of the things I was thinking as I was watching this unfold first of all is I can’t wait until this pandemic ends so we get on with this and thank god Ai-jen is already there building this movement, right!
Right now we live in a society where vulnerability almost is being criminalized and more and more of us are becoming vulnerable for all kinds of reasons. The moment has come for this movement. And hope is just claiming that and stepping into it.”

'Relearning Hope In A Time Of Darkness'

Victoria — Thu, 27 Nov 2025 10:07:34 GMT

The ‘Letters from a Caregiver’ Collaboration series continues with this article, the third letter of the Winter 2025/26 Season.

This season’s letters:

The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria
‘You Each Deserve Your Own Life’ By Jodi Sh. Doff

Hello, Friends and a warm welcome to the new Carer Mentor subscribers.

If you’re new to Carer Mentor, you can learn more about me through Who Started Carer Mentor and Why?

I know this is a busy week, especially in the US with Thanksgiving, and in the UK, deciphering the impact of the Chancellor’s Autumn Budget on our household finances. So, thank you for being here and for using some of your precious time to read this article. I appreciate your consideration and your presence.

For the last few weeks, I’ve struggled to navigate cynicism and disappointment, waffling between forced optimism and a striving for hope.1

To reassure everyone - I’m fine, we’re fine. I pull myself back into this mindful moment, and I’m counting our blessings. I compare the beautiful calm I have now with the hypervigilant dark days of walking on eggshells back in 2019, and hand on my heart, I can do a deep, warm exhale, especially because I can sleep now.

And yet, I’ve felt a dark cloud start to blur my vision, beautifully articulated by as ‘soul weariness.’ She explores this in her article, ‘Soul Weariness: A Recipe for When You’re Existentially Exhausted’. She says, ‘It’s a different kind of tired. Not just physical fatigue, but a whole season of emotional and spiritual heaviness, like something has been quietly pressing on the soul.’ I encourage you to read her reflections.

Maybe you’ve felt that your empathy and compassion are tapped out. More people are seeking your support, and you’re wondering how much more you can give. You’re feeling more vulnerable and exposed, but hiding under the quilt isn’t an option.

The phrase I’ve been turning in my head is ‘Please don’t steal my joy! How can I offer hope? How can I feel hope? How can I mindfully savour the light? It must be here if darkness is here.2

And so, I’m writing a letter to my 2019 self, to the time that was the darkest, most hypervigilant period of caring for my father.

But this letter is not about bringing light to that dark time, because the light was already there. The seismic events of those days gave us the sharpest, most piercing joy I’ve experienced to date.

No, this letter is about reminding the me of today, about how I managed to find hope within the darkness back then, and remember what I’ve discovered since 2019.

Relearning hope in a time of Darkness - what insights reaffirm the lessons I learnt, when my pain was the greatest? A head, heart and gut realignment, communing with myself!

Dear 2019 me

If you received my earlier letters, then you know I didn’t tell you how bad things were going to get. I’m sorry. How could I have conveyed everything you’re going through right now?

The rage you have inside is the complex fear, exhaustion, love, grief and real anger you have at Dad. It’s normal. All of it is indivisible from the whole cauldron of emotions that are stirring inside you. There’s nothing wrong with you. Please don’t guilt yourself.

Every unexpected thump or shout is a flinch-jump-to-action. I know, I’m you. There’s no calm, only hypervigilance, sleeping with one eye and ear open, which means you don’t sleep. Sleep! We have a more profound respect for time and sleep now.

Who knew how energising forty minutes on a treadmill could be, not a performative measure, but an energising necessity.

You’re sustaining yourself in a way that I admire and respect. You’re fitter than you ever were. But I know you feel like a tightly wound spring. You’re doing what you need to do, at the sharpest point of action, hopping from one leg to another, like a puppet whose strings are yanked cruelly by the uncontrollable, unpredictable symptoms of dad’s heart failure.

Fit and agile, AND holding in the hurt and secretly questioning yourself. I’m hugging you with all my heart and soul. I’m staying with you for a while.

Your focus is clear: emulating strength while holding the darkness at bay. You’ve no time to seek assurances, so I’m hoping I can give you some.

This isn’t about teaching you something new; you already feel this in your gut. Your heart will resonate. I’m hoping my words will resonate with your brain, to appease that inner critic.

This is also for me in 2025. I need to remember what you’re going through and how you navigated it all. You’re doing an amazing job of juggling and prioritising. You’re doing enough, and the best way you can.

Let’s not compare our pain and suffering to others' experiences.

Brené Brown (27 March 2020)3 explains that comparative suffering is the practice of ranking our own pain against others. Judging our pain to either deny or permit ourselves to feel our emotions. She says we do this because of a scarcity mentality, driven by fear and the belief that empathy is a limited resource. Instead of providing relief, this comparison-driven mindset leads to feelings of shame, isolation, and diminished self-worth.

“Comparative suffering is a function of fear and scarcity. Falling down, screwing up, and facing hurt often lead to bouts of second-guessing our judgment, our self-trust, and even our worthiness.”
“The opposite of scarcity is not abundance; the opposite of scarcity is simply enough. Empathy is not finite, and compassion is not a pizza with eight slices. When you practice empathy and compassion with someone, there is not less of these qualities to go around. There’s more. Love is the last thing we need to ration in this world.” - Brené Brown, Rising Strong.

You feel that, right? When we share empathy, we share our common humanity and a deeper connection.

Here in 2025, many people are suffering. You’d be horrified at the violence and injustices being inflicted on marginalised, vulnerable groups and individuals. I catch myself trying to qualify feelings, dismissing or muting thoughts.

Let’s give ourselves the grace of heartfelt recognition of what we’re experiencing rather than inflict comparative suffering on ourselves (thank you, for sparking my thoughts and hope, 4).

We can feel our pain AND offer empathy to support others. It’s not about choosing one over the other. We’re entitled to grace and compassion, and so are others in pain.

Reclaiming hope, relearning what it means to us

I remember how hard it was to think about anything in the future. Where you are, there’s a certain inevitability you’re having to reconcile in your head.

Dad will pass soon, but I know that knowledge offers no comfort, only grief. Compounded with fighting with him about calling paramedics nearly every week. And, you’re feeling guilty about contemplating ‘when IS he going to die?’.

It’s natural. You’ve been grieving since 2015, and now everything is so unstable: his pain, the dementia, the cancer, his instability walking. He’s so tired he doesn’t know where to put himself to rest - literally.

Gallows humour and dark thoughts are part of you, raging at everything he’s having to suffer—the unfairness, the indignities of poonamis, the loss of reasoning. All. Of. It Cruel. For him, and you and Mum.

And yet, together with you now, I remember the hope.

Text within this block will maintain its original spacing when published

With Hope. By Victoria

Hope is not a silver lining 
or a positive gritty-push of ‘no matter what.’
There are hopes in the darkest of hours and the deepest of caverns
for a small glimmer of light
or a trigger memory to re-feel the essence of a well-loved soul.

Material things can be a wish
but seldom a deep heart-held hope
A want, desire, or wish for possession
feels like a dopamine craving
not an inner yearning.

There’s something soulful about meditating on a hope
perhaps a prayer, or faith
or leaning into a belief
To hope for something not yet here 
or sustain the best of now.

Perhaps it doesn’t have to be miraculous or something big
Can we hope that hope’s still here?
I can still feel hope
The crescendo of its potential
and fear the loss of it.

Hope is a human aspiration of
loving this life
despite what it is giving us today
For what it could be tomorrow
Human-ing hard

With hope.

I wasn’t feeling hopeless, even in the worst of events. You’re in a no man’s land, a liminal space of not knowing what hope looks like. ‘Can we hope that hope’s still here? I can still feel hope. The crescendo of its potential and fear the loss of it.

I hoped Dad would pass peacefully—not under stress, or in the hospital, but comfortable at home with dignity—a big hope.

Hope is ‘it could turn out well’, a potential that flows with the fear and uncertainty. Optimism requires a certainty, ‘ it will turn out well.’

Between the two, hope has the space for intention, choice, action and agency. And it also allows us the ability to express our vulnerability. It’s where empathy can live, and connection can begin. We do what we can and hope.

I needed some evidence to support what I felt in my heart and gut.

September 9 2024, Maya Shankar interviewed Professor Jamil Zaki5 in the ‘Slight Change of Plans’ podcast.

Psychologist Jamil Zaki studies the science of human connection, and he believes cynicism is holding us back. Cynicism isn’t just harmful for our health, he says, it’s also misguided. He talks to Maya Shankar about a powerful, alternative mindset that can help: what he calls “hopeful skepticism.”

Four quotes by Jamil Zaki from the podcast that helps to recalibrate my head, heart and gut alignment:

“A cynic might see Injustice just like the rest of us do, but cynicism suggests that there’s nothing really to be done about it because if a broken system reflects our broken nature, if the worst of us is who we really are, then any change any attempt to improve the world or the systems that we live in is doomed from the outset.”

“Hope takes the deep uncertainty that we have about the future as the place where our actions matter and so hopeful people tend to focus on their agency and they think well there’s a vision of the world where things could be better I’m not saying that’s what will happen but it’s a possibility and in order for that possibility to become more likely I need to take action.”

Hope is not a naive way of approaching the world it’s an accurate response to the best data available.

“and the reason that I call it hopeful skepticism is because our default tends to be negative. When you adopt a skeptical perspective you tend to move towards a slightly more hopeful and positive place because you’re correcting for the biases that we already have.

I hope you’ll listen to the podcast at the next respite break. Seeing the goodness in the actions done by others can reaffirm our hopes for the future. Seek out the good in others. Trust that we can build hope.

Hope is not a naive way of approaching the world it’s an accurate response to the best data available. - Jamil Zakil

5 things you’re doing to sustain your resiliency, and hope.

The treadmill sessions, not just to stay physically fit, but it enables us to let go of mental criticism and rumination and to focus on what’s needed in the moment.
A mindful focus on love and hope. Even in the darkness, these connect you to the joy in the moment. It’s not whimsy or naive. It feels vulnerable and values-aligned.
Connect with other carers, connect with your chosen family especially in dark months. Empathy is not finite. Don’t forget the extrovert social connector is still within you!
Music and more music. You know.
Hope also requires self compassion, to avoid ‘comparative suffering.’ You, like anyone else, deserve kindness.

Sending love and hugs. Life is going to get harder, I’m sorry, but I’m here in 2025. You are going to be okay. We’ll keep hoping for ourselves and others.

Love, Me

The Closing Rapid Fire Questions

My responses:

Courage to me is…Walking forward whilst carrying the fear. Leading with curiosity despite the uncertainty. Living my values-aligned definition of thriving
Thinking of someone you admire/respect, name three of their standout qualities/characteristics: Empathy, the ability to defuse conflict with grace and being true to themselves-authenticity
What’s one quote/movie/book that’s inspired you?
Susan David’s Emotional Agility: Get Unstuck, Embrace Change, and Thrive in Work and Life (Published August 3, 2017) and gave a TED Talk, ‘The Gift and Power of Emotional Courage’ in November 2017.

A prompt for reader discussion:

When things are feeling dark, and you’re weary, what most easily sparks hope for you?

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

Frustrations and disappointments have been stirred up by the remnants of the October slide + the seemingly obvious omission of unpaid carers from an important inquiry report ‘Keep Britain Working’ which also required hours of wading through reports and data. Systems and macro events have been pushing me towards negativity.

Thich Nhat Hanh’s ‘No Mud No Lotus The Art of Transforming Suffering (p. 8). ’

According to the creation story in the biblical book of Genesis, God said, “Let there be light.” I like to imagine that light replied, saying, “God, I have to wait for my twin brother, darkness, to be with me. I can’t be there without the darkness.” God asked, “Why do you need to wait? Darkness is there.” Light answered, “In that case, then I am also already there.”
If we focus exclusively on pursuing happiness, we may regard suffering as something to be ignored or resisted. We think of it as something that gets in the way of happiness. But the art of happiness is also and at the same time the art of knowing how to suffer well. If we know how to use our suffering, we can transform it and suffer much less. Knowing how to suffer well is essential to realizing true happiness.

March 27, 2020 Brené Brown ‘Unlocking Us podcast’ on Comparative Suffering, the 50/50 Myth, and Settling the Ball strategies for falling apart, staying connected and kind, and giving ourselves permission to feel hard things.

“Comparative suffering is a function of fear and scarcity. Falling down, screwing up, and facing hurt often lead to bouts of second-guessing our judgment, our self-trust, and even our worthiness. I am enough can slowly turn into Am I really enough? If there’s one thing I’ve learned over the past decade, it’s that fear and scarcity immediately trigger comparison, and even pain and hurt are not immune to being assessed and ranked. My husband died and that grief is worse than your grief over an empty nest. I’m not allowed to feel disappointed about being passed over for promotion when my friend just found out that his wife has cancer. You’re feeling shame for forgetting your son’s school play? Please—that’s a first-world problem; there are people dying of starvation every minute. The opposite of scarcity is not abundance; the opposite of scarcity is simply enough. Empathy is not finite, and compassion is not a pizza with eight slices. When you practice empathy and compassion with someone, there is not less of these qualities to go around. There’s more. Love is the last thing we need to ration in this world.”

Brené Brown is a research professor at the University of Houston, where she holds the Huffington Foundation Endowed Chair at the Graduate College of Social Work. She also holds the position of Professor of Practice in Management at The University of Texas at Austin McCombs School of Business.

“Human/Parents Interview: Tina Hedin and Grace & Gratitude. Pull up a seat to the table and get ready to listen to Tina Hedin of Letters From a New Life!” By and

“I’m not hard on myself anymore. Maybe just for a minute, now and then, but I quickly remember: I don’t need to contribute to my own suffering. I think it’s okay to take as much happiness as I can find, every day.”

Jamil Zaki is a professor of psychology at Stanford University, director of the Stanford Social Neuroscience Lab, and author of two books: Hope for Cynics and The War for Kindness.

'You Each Deserve Your Own Life' By Jodi Sh. Doff.

Victoria — Thu, 20 Nov 2025 09:34:38 GMT

The ‘Letters from a Caregiver’ Collaboration series continues with this Winter 2025/26 Season.

Hello, Dear Readers, I hope you’re well. A warm welcome to new Carer Mentor subscribers. You can read about me here: Who Started Carer Mentor and Why?

In the US, it’s National Family Caregiver’s Month

Caregiver Action Network is the nationally recognized leader of National Family Caregivers Month (NFC Month), working with partners and advocates nationwide to highlight caregivers’ challenges, celebrate their dedication, and connect them to the resources they need.

About National Family Caregivers Month
National Family Caregivers Month is a time to:
Raise awareness of the important role family caregivers play in our healthcare system.
Educate communities about the challenges caregivers face and the support they need.
Connect caregivers with trusted resources that make their journey a little easier.
Honor caregivers for their commitment, resilience, and love.
Since Caregiver Action Network’s founding in 1994, we have advocated for the recognition of family caregivers. And under our leadership, November has been recognized as National Family Caregivers Month since 1997 through presidential proclamations, nonprofit campaigns, and community events nationwide. Each year features a unique theme chosen by Caregiver Action Network to spotlight an important issue in caregiving.

Our 2025 theme, Plug-in to Care, focuses on connection [click the link to go to the resources]—helping caregivers easily “plug in” to vital support tools, trusted networks, and educational resources that can make the caregiving journey less overwhelming and more supported.

You can find a series of videos on the YouTube: Caregiver Action Network channel.

Letters from a Caregiver

Last week, I wrote the introduction to this new season of letters. It’s a time when emotions can swirl, and fear stemming from uncertainty can rise; it can all feel too much amid the stress of holiday traditions and expectations. For those of us who can feel the early ripples of grief reappearing, I see you—heartfelt resonance and warm wishes.

Please remember to take a breath and pause. If we get a bit more snappy or feel a funky feeling, you could be hangry, you could be tired after a big ass year, but you could also be feeling a loss, a sadness, or someone’s absence more keenly. Grief comes from many different sources.

I’ve started reminding myself of the small rituals of self-compassion that give me comfort. What are yours?

If you need some ideas for music, TV shows, or films to distract, transport you for a while, or feel the feels, explore the ComfortZone articles I started last year.

As we enter this second season of ‘Letters from a Caregiver’, I’m looking forward to discovering more diverse caregiving experiences, holding space with empathy and compassion, and endeavouring to handle each with the care and respect it deserves.

This season can be fraught, but I hope this new flurry of letters brings some heartfelt empathy, companionship and light on the path you walk ahead.

This week’s letter is by Jodi Sh. Doff, whom I met via Substack back in 2023.

If you haven’t subscribed to her publication, I highly recommend reading, ‘The Long Goodbye.’ Jodi shares the real deal about caring for her mother. Through her articles, I’ve learnt, laughed, stolen her prune recipe and feel grateful for her badass bravery. [Browse the resources she put together here, and discover her doppelganger connection to Cher here!].

Big hugs and love, Jodi. Thanks for accepting my invitation to write a letter!

Author Bio: Jodi Sh. Doff is a NYC-based sixty-something, single, childless, sober writer who’s spent years writing about sex, drugs, and drunkenness. For the last 10 years she’s been the primary caregiver for elderly mother, as she descends slowly into dementia. [ Publication: The Long Goodbye ]

You Each Deserve Your Own Life

It’s 2025, I’m 68 years old & Mom has been living with me for over seven years. In 2017, my 61-year-old self believed the doctors when they said Mom only had a year or two left before the dementia took her entirely. I’m hoping time is linear but not restrictive, that maybe there’s an off chance and a fluctuation in the time/space continuum and 61-year-old me will get this letter. Maybe I can convince myself to choose a different next right thing, a different win/win. There are no wrong choices when you act from love, but 68-year-old me would really like to not feel like 75-year-old me.

Dear 61-year-old Jodi -

You did a beautiful thing, bringing Mom into your home after she broke her back. If you’d bothered to ask me, I’d have told you to just bite the financial bullet. Pay for around-the-clock care for a month until her back heals and keep her in the assisted living where her friends are. But you didn’t ask, and you didn’t listen to everyone in your caregiver support group who said don’t do it, so you prolly wouldn’t have listened to me and what’s done is done and your heart was in the right place.

I know you think you know everything and what’s best, but this is uncharted territory for you. You have no experience at caregiving or parenting — which, face it, is exactly what you’re doing, parenting your mother. Our mother. So confusing, reaching across time. Anyway, sometimes consider talking to people with experience. At least listen to what they have to say.

But now, it’s been a few months and she’s walking as well as she was before the incident, why are you still keeping her with you? Sure, she’s not eager to move into someplace new, scared she won’t fit in, won’t know anyone. Change is frightening for everyone, more so when you’re losing control of your memory, mind, and life. Remember every time you moved from one grade to the next in elementary school? Remember how quickly she adapted when you first moved her into the Tanglewood facility? By the second day, she had a posse, but she can’t remember that. That’s part of the dementia, the memory loss, confusion and fear. She blossomed in Tanglewood, and babygirl, she’ll do the same in the next one.

Letting go of her is frightening, too, but it’s your job to make the right decisions. This time chose one with memory care on site so she can age in place. I understand your hesitation, but let me tell you what’s going to happen.

If you follow my advice, and you should because I know what’s coming, and I just told you to listen to people with experience, you’ll move her into the assisted living in Kew Gardens. It’s close enough that you can be there every day if you want to. It’s as beautiful as Tanglewood was. She’ll make her mark and find friends because she’s silly and warm and a lovable sort of lady. She’ll be happy and social and when she forgets who you are—yeah, that’s coming—it won’t matter. She’ll be surrounded by other people who are forgetting things like that every day.

Here’s something else you don’t know. A world-wide epidemic is coming. Thousands of people will die. Nursing homes and long-term care facilities will shut down and quarantine and you won’t be able to visit, which sounds very terrible. It’s very possible that Mom will be one of the old folks to die from this virus. But, would that be so terrible?

She’s going to die someday. Remember the years the two of you talked about it? Reading Final Exit together, making plans, doing dry runs? Sorting the pills she’s hoarded for years to take herself out on her own timetable? Why shouldn’t she be somewhere lovely surrounded by friends up until the end?

If you insist on keeping her home, it’ll be a quarantine of two. No aides. No help. No support. You’ll both get the virus. It’ll be months before home health aides come back and you’ll still be on your own here and there as this one or that one tests positive and can’t come in.

Your lives will shrink. She will never rebound to pre-quarantine days. Only two people will ever come visit her, no matter how long she lives with you. Two. The few who’d been calling will stop as her dementia progresses, shrinking her world even further. And you babe, your dream of traveling will gather dust on a shelf of not being able to leave her because you’re the night nurse, every night. Year after year. After year. It will go on longer than you could have imagined.

You’ll have to give up any evening activities. All overnight activities.

Your love will deepen, but so will your resentments. Your dreams, deferred.

Please, listen to me and you’ll get to still be her daughter, and she’ll be somewhere safe, with 24-hour care, planned activities, games and fun, friends waiting to be made. You can be there as much, or as little as you want. You will each have your own full lives. You won’t be trapped by obligation. And she won’t be trapped by the abandonment of friends.

When her friends in the facility die or move elsewhere (somewhere cheaper), she’ll forget quickly, but new old folks will be coming to fill the void. She will play hostess and take them under her wing because that’s who she is.

I’m begging you, I know she’s resistant to moving back. I know you’re frightened of letting her go, you think no one can care of her the way you can. That’s true. But it’s not necessarily the best for everyone involved.

Freedom & companionship — you’re each entitled to that and living together is not offering either in any sustainable form.

I love you.I love her.

For both of your sakes, move her back to the assisted living while she can still enjoy it, and you’re still young enough to have some more adventures.

Love you long time,

Future (very tired, older) Jodi

The Closing Rapid Fire Questions from Victoria:

In this Winter Season of the letters, I’ve asked each author to share their thoughts on courage and to name some qualities they admire/respect in others.

I have a strong aversion to words like ‘hero’ or superhero when people talk about caregivers because, for me, I think it can set unrealistic expectations and emotional burdens on us. We are regular, everyday, perfectly imperfect humans who have the same limitations of time, energy and mental capacity as anyone else.

So, for a change, it’s our turn to voice our thoughts about courage.

Those qualities we admire in others? — They’re usually the values we elevate over others. They are the ones we aspire to because we hold them in high regard.

Jodi’s responses:

Courage to me is…doing the next right thing even when you can’t see the light at the end of the tunnel.
Thinking of someone you admire/respect (friend/colleague/well-known person), name three of their standout qualities/characteristics:
I’d have to pick different folks for different qualities. My good friend M, who has a big heart and is able to accept love without feeling obligated by it. A, who also has a big heart and who as a single mother raised an amazing kid who is now off to college and during that time from birth to college had a dozen lifestyle adventures and made friends who llamas and farmers and old folks and got her college degree. My friend G, another giant heart, I admire her ability to be vulnerable, to cry and not feel she has to show a strong outside. She’s fostered so many lucky kids, struggled with health issues, cared for family members. She’s an actual angel, I think.
What’s one quote/movie/book that’s inspired you? Monty Python’s The Holy Grail: “I’m not dead, yet.”

A prompt for reader discussion:

What do we owe our parents in their old age and do we owe them more if they were good parents than if they were neglectful?

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

The Winter Season of 'Letters from a Caregiver.'

Victoria — Thu, 13 Nov 2025 10:08:58 GMT

Hello, Dear Readers, I hope you’re well. A warm welcome to new Carer Mentor subscribers. You can read about me here: Who Started Carer Mentor and Why?

Last week’s Autumn Season finale offered reflections on Connecting With Empathy and Compassion, presented a tabled comparison of sympathy, empathy and compassion and highlighted a thought-provoking article, ‘Can Empathy Be Learned?’ by .

Subscribe now

The ‘Letters from a Caregiver’ Collaboration series continues with this Winter 2025/26 Season.

For many, November to February can be especially discombobulating. There’s the holiday season of family gatherings, where relationships can be fraught and absences felt more acutely. Caregivers can feel pulled in many directions; stuck between the wishes of many, and defending the needs of the person we care for.

This season, where emotions can swirl and fear stemming from uncertainty can rise, it can all feel too much. This season can be particularly hard to navigate for those of us who anticipate ripples of grief.

I see you. Heartfelt resonance and warm wishes.

I’ve started reminding myself of the small rituals of self-compassion that give me comfort. What are yours? You’re not alone.

‘Treading gently across fresh snow’ by Victoria

Text within this block will maintain its original spacing when published

As darkness closes
in months of cold, snow and wind
still, 
hard to stay inside, with friends and kin
gone the bright evenings 
walking easily outside.

Worried, 
about friends and the season ahead
On the cusp, 
for some, it's excitement,
But, for us, 
some feelings of dread.

These are the times when
love’s light faltered
Traumatic moments
stuttered, the nights
jolted, rollercoaster-ed
Fear and fright. 

Folds of time and grief re-exposed
A dusting of new events
lay. 
A friend, another gone, and now
fresh snow. Across the dark season here again, 
treading gently towards
another year.
End.

Our caregivers’ experiences are unique, yet we’re all connected.

After a decade of caregiving with increasing responsibilities (oof!), I’m deeply curious about the differences and the diversity of our caregiving experiences.

I have a great appreciation for the authors who’ve accepted the invitation to write a letter to their younger selves.

Where does the Venn diagram of our experiences intersect, and where’s the space unique to us?

Perhaps there’s a cultural overlay, or a lifequake(s)1, that orients an experience on an entirely different calibration of reference points compared to my own?

No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

Writing to our younger selves can help us connect with empathy and compassion without having to explain our reference points or viewing lens.

As readers, we can curiously shift our kaleidoscope to witness the colours and patterns of someone else’s experience. We can also hold space for their feelings.

When we pause to consider the lines that turn to curves, the colours that have changed their tone, perhaps we can also appreciate the nuances of our own caregiving journey and how we’ve navigated the millions of small choices and decisions that make our experience uniquely ours. Our life’s fingerprint.

Our choices, our agency

With every caregiving experience, we can be juggling, balancing, and making choices about safety, risks and benefits; needs versus wishes; stress vs calm.

I hope we include ourselves within those equations. What’s safe for us to do alone, or when do we call someone for help?

When do we call for an ambulance if symptoms are not improving? At what point do we redefine the situation as ‘life-threatening’?

The frequency and intensity of these decisions can depend on the stability of our loved one’s health condition and symptoms.

Whether we’re breathing with uncertainty every day or managing to sustain a plateau of calm, we’re in a tapestry of care. Fear and anxiety are woven into this uncertainty. Whether this is hands-on or overseeing at a distance, it’s all caregiving.

A tapestry tested

For caregivers, people telling us what to do can feel like someone trying to poke holes in the tapestry of choices we’ve carefully woven, to the best of our ability, under stress and strain.

The warp and weft are tenuous, and yet we still manage to weave the threads of difficult choices together. Between the tension points, we curate memories and mindful moments. We try to hold it altogether.

Well-intentioned, unsolicited advice, from the inexperienced or uninitiated, but especially from care-splainers, can feel like grenades lobbed randomly for spectacle or to test our rebound response, in a game we didn’t want to play.

Our choices are carefully weighed.

I’d like to share a short note from [shared with permission from Sammie]

An Offer I Turned Down
While caring for my wife with Alzheimer’s, I was offered assisted home care by my family because they probably saw the stress, I was going through. There are also programs offered by our insurance and social services. Unlike many home caregivers working, being retired, I was able to gracefully reject their concern and offer, telling them not to worry, “I was ok,” even though I was physically and emotionally exhausted. It had nothing to do with finances. This was never an issue. One critical factor was that she is not bedridden.
I am aware of many successful assisted home care services that truly help home caregivers.
My problem was “emotional, not rational.” I simply couldn’t let go of her after 44 years of marriage. I just didn’t want any third-party person “to touch” my wife. Furthermore, I had no trust in third-party services because I had heard of many problems with these services from other caregivers. I felt that I was the only one who could defend her from any danger because of my one exclusive advantage, “my love for my wife,” something they could never have.
I am convinced that during all of these years of our marriage, filled with a lifetime of knowledge about her health, likes and dislikes, habits, hobbies, traditions, and idiosyncrasies, is key in assuring her daily well-being. This enables me to tap into her history, cater to her needs, make her feel happy about herself, and stimulate constant interaction with her family.
I am certain that I can uncover details that might be unforeseen to a stranger, regardless of how specialized would miss, that could endanger her fragile health.
Most importantly. I was paranoid that my wife would feel an intrusion into her dignity and private space from someone unknown to her. I couldn’t bear that.
My family accepted my decision and has supported me every step of the way.
“I will always be her protector and defender, and I will never let go of her, no matter what.”
At the end of our day, “Goodnight honey, you were incredibly great today.” “You were amazing!”
I get that smile I am constantly looking for, and we embrace each other with a hug and kiss.

My response to Sammie:

Your love shines, Sammie. AND your eyes-wide-open Choice of caring for Ximena is a truth no one can deny or take away from you.
Well-intentioned advice or expectations from others don’t have to dictate our actions. I LOVE how you describe providing context for Ximena and can offer her the scaffolding she needs to have quality moments every day.
Like you, I’ve read and heard horrible experiences of care homes, some where convenience overrides patient wishes, where patients are, e.g. over-medicated, or left in beds.
People tend to forget that we, as caregivers, have rights and choices. We can choose to care, or not. Each person deserves the freedom to choose either way.
There needs to be good quality, accessible support and care available to support the people we care for and our choices.
Thank you for sharing your journey and thoughts with us.

Caregivers and their loved ones make the best choices they can with the best information they have and the resources they are aware of and have in hand, at that time.

Can things be better, more…comfortable, special, enlivened? Perhaps, but listening to that uncertainty can drive us mad. Love already sets impossible standards for us to achieve.

Eyes wide open, we also know better than many how things can swiftly change. We weigh up the equations, we do daily checks, and balance the risks minute to minute. But for the here and right now, we’re the guardians of stability and our loved ones’ wishes and needs in this specific moment.

We’ve travelled through the choices to calibrate our combination—a code of actions that sustains stability and safety.

Our unique, fragile bubble may look monotone and delicate from the outside, but we curate our technicolour mindful moments within its boundaries.

We’re living in the liminal space, weaving between the amplitudes of life.

“Please handle with care.”

Often, caregivers are the threshold, the buffer, and the protector when the threads of the tapestry are in flux or tightening. We know the only constant in life is change.

Still, we have to move forward despite the fear. Caregiving, like life in general, does not stand still.

Our letters share some of our choices and tapestry through our frame of reference.

As we enter this second season of ‘Letters from a Caregiver’, I’m looking forward to discovering more diverse caregiving experiences, tracing each fingerprint with empathy and compassion, and endeavouring to handle each with the care and respect it deserves.

This season can be fraught, but I hope this new flurry of letters brings some heartfelt empathy, companionship and light on the path you walk ahead.

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

Bruce Feiler at TEDxIEMadrid June 2022 ‘The Secret to Mastering Life’s Biggest Transitions’

Connecting with Empathy and Compassion

Victoria — Thu, 06 Nov 2025 07:50:39 GMT

Hello, dear Friends. In our ‘Letters from a Caregiver’ collaboration, which I started on September 4th, we’ve been sharing heartfelt messages of wisdom and comfort to our younger selves.

This article brings the Autumn series to a close, but don’t worry, more letters are scheduled to be posted.

A big, ’Thank you!’ to and Madeleine The Autumn 2025 Letters from a Caregiver Series:

Subscribe now

The letters

At the start of this collaboration, I wasn’t sure whether the invitation to meet our younger selves would be too much.

Would this be too painful? A reopening of old wounds?

Speaking for myself, part of me really didn’t want to revisit events, but I guess my curious learning self was intrigued to discover what reflections would emerge.

The objectivity of time can offer us a safe and gracious lens.

Writing a letter to ourselves allows us to treat ourselves like we would a close friend, removing the need for broad context explanations or cushioning of the delivery.

I found more forgiveness, comfort, and an appreciation for what I endured. Outside of the maelstrom that was then, I could breathe appreciation into what made me who I am now. What did you find within each letter?

Similar threads and unique circumstances weave through these letters. We feel the pain, but also the creativity and moments of joy. There was grace and an opening up to vulnerability; change and a return to a sacred contract. We found blessings within the folds and between the lines.

Such is the paradoxical, Both/And of our common humanity and diverse experiences.

We shift from empathy to compassion and self-compassion, motivated by our desire to help each other and ourselves.

Connecting with Empathy and Compassion

In December 2013 Brené Brown gave a talk to the Royal Society of Arts (RSA)

What is the best way to ease someone’s pain and suffering? In this beautifully animated RSA Short, Dr Brené Brown reminds us that we can only create a genuine empathic connection if we are brave enough to really get in touch with our own fragilities. 1

I put this summary table together based on a Google search of articles and my own experience. It offers a simple comparison for your consideration and reference.

I also found this useful article:

Empathy vs compassion: the difference, and why they matter By Calm’s Editorial Team. [Clinically reviewed by Dr. Chris Mosunic, PhD, RD, MBA]. Empathy and compassion are similar but different. Learn the definition and the difference between empathy vs compassion. Plus, how to become more compassionate.
Compassion is a concern for the wellbeing and happiness of others and a genuine urge to help alleviate someone’s suffering. Compassion isn’t just a fleeting emotion—it’s a lasting state, a readiness to extend a helping hand whenever possible.

One key takeaway: Compassion is motivated by a desire to alleviate pain, to act when we connect in empathy. However, not everyone wants action or resolution. Not every situation - especially grief- is looking to be resolved. Hence, the importance of empathy, gentle communication and healthy boundaries in any compassionate connection.

What is empathy to you?

This was one of the rapid-fire questions to each other, at the end of each letter. Here are our eight responses:

Victoria “Choosing to be with someone else (in person/virtually), with their pain, without judgment or imposing anything (experience, opinion, ideas, etc.) into that space. Being present without pressure or demands.”

Mary Beth Kaplan (Mantras and Coffee) “Empathy to me is extending grace in any circumstance.”

Dr Rachel Molloy (Time To Care) “Empathy to me is being able to read someone’s emotions, imagine walking in their shoes. You know when it happens, as you feel connected to that person, you understand their pain. And this enables you to work with them to help find solutions.”

Marcilina Martel (The Other Side of the Chronic) “Empathy to me means walking in someone’s shoes and really feeling their pain. It’s recognizing that the pain, joy or exhaustion is real and important. It’s about being present. It’s about staying when it’s hard and have the courage to see someone fully, even all their broken pieces and still love them as they are.”

Janine De Tillio Cammarata () “Holding space for someone, no matter where they are in their life. Listening with my whole heart. Not wanting to fix anything, but to be there for them.”

Carolyn Malone () “Having compassion for another person’s experience. Being able to put yourself in another person’s shoes.”

Lauren Klinger (Learn From My Mistakes) “..not only understanding and feeling someone’s pain but also respecting their goals, values, and wishes.”

Madeleine ( ) “..taking the time to truly listen to another’s experience, with full presence and awareness of my own projections. It’s listening deeply enough to understand not only what is spoken, but also what remains unsaid. Remaining willing to be changed by the role of witness.”

Can Empathy be Learned?

I discovered an article by that piqued my interest. ‘Can Empathy be Learned?’ She described herself as the outlier in her family, and shares how she leant into her empathy as an actor. She studied with a teacher who ‘would hand us the name of a real or fictional person, and we’d start to connect the dots between who I am today, and how I could have been this other person. After the final dot has been reached, the gulf between two people no longer existed.’

Author Bio: Cathy Joseph writes Random Conversations on Substack, offering personal essays that illustrate and explore human connection through a lens of positivity. She champions intentionally honoring ways of being and promotes the belief that we can change our world, one interaction at a time.

I invited Cathy to share some personal reflections on empathy as an introduction to her article:

I have always known I could metaphorically put myself in the mind and heart of another person and deeply understand how they feel emotionally and how they think. I feel it in my body. I trust it implicitly. It guides both my personal and work life, and I cannot imagine living without it. I am the only one in my family who has this level of empathy – or seemingly any empathy at all.

Can Empathy Be Learned? was my first post on Substack. I wrote about being an outlier in my immediate family – ridiculed for not embracing their ideology and way of being. From childhood to adulthood, I was belittled, demeaned, derided. I felt so much, and I had no way to process those feelings in younger years. That changed when the Dean of Women at my college became a dear friend and mentor.

She helped me understand myself. She modeled a different way of being from my family. She openly demonstrated the warmth of a caring friendship. I felt safe with her. She was the first of many mentors who touched my life and helped me navigate the rocky path of caring for myself.

Which brings me to Carer Mentor and these beautiful, heartening, inspiring Letters from a Caregiver – wisdom from the present offering the balm of peace to one’s own past. I am in awe of these caregivers who shower their younger selves with warmth and understanding, guidance and love. These are healing conversations.

I can feel the kindness that infuses these letters. I can feel my heart being soothed. I have been there.

Working with a healer, I have been guided to observe my younger self at specific ages – 4 years old, 6 years old, and more. I started understanding myself and those periods of time at a deeper level, with profound empathy for myself and my family. When asked what I would say to that younger me today, I consistently showered her with love, kindness, appreciation – exactly what I read in these letters.

I believe that the search for peace is a universal quest. Empathy opens the door to finding it. The letters inspire us forward.

I hope you’ll read Cathy’s article ‘Can Empathy Be Learned’

Random Conversations

Can Empathy Be Learned?

My brother recently mentioned a financial call-in program he likes to listen to. What I found surprising is why he likes this program so much…

2 years ago · 35 likes · 47 comments · Cathy Joseph

This brings the Autumn Collaboration Series to a close.

Next week, a new season of letters starts to take us into Winter-ing.

Thanks again to everyone who contributed to this series. I appreciate all your work and support.

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

© Carer Mentor, November 6, 2025. This concept/theory/poem is original to Carer Mentor™ VLChin Ltd. If you use it, please give credit and link to the original work. Thank you. www.carermentor.com

Voice: Dr Brené Brown Animation: Katy Davis (AKA Gobblynne) www.gobblynne.com Production and Editing: Al Francis-Sears and Abi Stephenson. Dr Brené Brown is a research professor and best-selling author of “Daring Greatly: How the Courage to be Vulnerable Transforms the Way We Live, Love, Parent and Lead” (Penguin Portfolio, 2013). She has spent the past decade studying vulnerability, courage, worthiness, and shame.