Carer Mentor: Empathy & Inspiration: Letters from a Caregiver

"When Wishes Come True" by Cindy Roman, who writes Alzheimer's Witness.

Victoria — Tue, 14 Jul 2026 08:00:52 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 their 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!

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

Subscribe now

Today’s ‘Letter from a Caregiver’ is by Cindy Roman who writes

I appreciate Cindy’s articles because she shares the small everyday moments of her life—when small isn’t small at all.

“I didn’t set out to write about Alzheimer’s. I started writing to make sense of what was happening around me—and to hold onto what felt like it was slipping away.
This space has become a record of that experience.
These are stories of caregiving, of identity shifting in real time, of loving someone whose memory no longer holds you the same way. Some are quiet moments. Some are harder to sit with.
Everything here is true to what it feels like to live inside it.
If you’ve found your way here, you’re not alone.” - Cindy

She’s not only caring for her partner, Frank, but also supporting her adult son, Niko, who has high-functioning autism and ADHD, and she teaches. Cindy’s shared how a therapist helped her realise just how much she’s been ‘carrying’: Caregiver X Three When Karen did the math, I realized I wasn’t carrying one life. I was carrying three—and forgetting my own.

I recommend reading more of Cindy’s articles, which bring home the realities and challenges of her caregiving.

Thank you for sharing your letter with us, Cindy.

Author’s Bio: is Cindy Roman’s ongoing series of flash memoirs shaped by caregiving and loving someone with Alzheimer’s disease. These stories bear witness to what remains as memory fades. Her work has appeared in Yellow Mama, and she is the author of the memoir Who Am I?

When Wishes Come True

A letter to my younger self.

Dear Cindy,

“Be careful what you wish for. You might just get it,” Tia (aunt) told you when you were in late adolescence – maybe 18 or 19.

It’s a statement she often repeated into your 20s. Do you remember? I remember it well. At the time, you truly believed she was out of touch with life and the current times. As we sat in her kitchen and talked, she tried to help you avoid typical youthful mistakes. At times you listened but when it came to Frank, you certainly did not.

You were in a desperately innocent state of mind. You could tell something was brewing between you and him but weren’t quite sure what yet. Nevertheless, you wished for something to happen.

If you remember, the fact that he was married played little bearing on your thinking. I don’t know why, but it didn’t. You somehow believed that if something wasn’t initiated by you it couldn’t be wrong. As much as you knew from a moral perspective that it was, you justified your actions as some form of fate.

Frank was a god at the college. Every student admired and respected him. But he was choosing you.

Do you remember shortly before anything happened when you received that chain letter promising that if you sent it to others, your life would improve tenfold? You thought your life was about to set in motion a future you knew would make you happy and threw the letter away. How young and foolish you were. But it did nothing to dissuade you from your dream that felt magical. You truly believed consequences belonged to older people, not a naive 21-year-old like you.

You believed that getting the man meant getting a certain life. You didn’t necessarily believe or even want him to leave his wife and family. You thought it made him that much better a person because he would stay with them. You didn’t know what the future would hold but you didn’t care. Immediate gratification was all you sought.

Frank was all consuming in your thoughts. His charisma, electric energy, humor and status as a professional Broadway musician devoured you.

The summer when it began, you worked for him as he initiated a new musical ensemble on campus. Your responsibility, attention to detail and dedication impressed him, so he asked you to join him on his current project.

He was separating you from the others. He could have picked anyone, instead, he picked you. It was an honor and it set in motion the next forty-plus years of your life.

The evening when it finally happened he told you he loved you. You interpreted that to mean he was in love with you. Now, I recognize that the admission was more a love for another human being, not necessarily a future partner. I’m happy to tell you that will change in time. It became a mature romantic love for a partner.

How could you not wish to be with him? He was offering you the opportunity to be special to him – something you desperately wanted. At the time, you loved him enough to build your life around him, his schedule, his availability and his vacillation.

As foolish as it seems now, at the time your wish had come true. You got him and you got the life you wished for.

Much happened in the forty years that passed. He did fall in love with you. You were together, you were apart – on and off over all those years. You married when you thought hope was gone. Not that you ever wished for him to leave his family; you just needed more of his time than he could give.

Finally, after all that time, you resigned yourself to love him and only him. You tried to love another and briefly did, but that didn’t last and you found your way back to Frank. It was always about Frank.

Then the opportunity finally came to be with him as a partner. Little did you know this would prove to be a sacrifice you didn’t anticipate. Over the years, you had plans for the time you would eventually share together. It never occurred to you that the dreams you dreamt together and the places you would go would evaporate so quickly.

By the time you lived with him, his memory was poor. You attributed this to normal aging and senior moments. Once you were together a few months, it became clear this was more than memory problems. Something was wrong.

For over a year, he refused to see a doctor. By the time he did, it was Alzheimer’s.

You intended to be his partner but found yourself taking on more and more responsibility – paying bills, managing medications, becoming his spokesperson and slowly, quietly becoming his caregiver. It was a role you accepted and even embraced. He truly needed you and you intended to fulfill your promise to stay with him until the end.

There was no marriage due to his fears of what that entailed. But there was love and plenty of it. You were happy in a weary kind of way.

Over the next year you found yourself coping with behaviors that seemed increasingly off. He was angry much of the time and verbally abusive – not so much at you but to others on the road, in the market and most assuredly at the news.

You knew nothing about Alzheimer’s and didn’t research it much until one conversation with Frank’s son prompted you to learn everything you could about the disease during one long and laborious summer.

At first, much of what you read didn’t seem to apply to Frank. Then slowly things began to change. Repetition was one of the first signs and you found yourself losing patience despite the books warning you this was natural and expected. He started losing language skills, struggling for words and describing things instead of naming them. Instead of Atlantic City, he’d say, “that place where you go to gamble.”

The last year was when all hell broke loose.

He started imagining things that weren’t real. You later learned these were delusions. You found yourself absorbing his reality all day long. Then came the texts from inside the house implying you weren’t there. Then he imagined another you – the young college student version of you.

It was frightening, wasn’t it? You didn’t know what to do or whom to turn to. His doctors did little to prepare you for what was happening and where you were heading.

The most frightening feeling was relief when leaving the house and fear when returning because you didn’t know what you’d encounter when you got home. Would he know who you were? He began seeing you as different family members and not you. That will break your heart, won’t it?

The exhaustion will quickly become overwhelming but also shameful. You won’t accept that maybe this is going to be too much for you, but you’ll realize love can coexist with resentment and grief. Do you love him enough to do what needs to be done? Yes. You’ll find that you will.

It was at this point that your aunt’s words will come back to you. You will have achieved your dream but it won’t look like what you thought it would. You won’t travel, you won’t have a partner who’ll make you feel safe enough – if anything, you’ll keep him safe. You’ll became the protector.

As an adolescent, you couldn’t imagine this version of devotion because no adolescent imagines becoming a caregiver. Your wish begged for a beginning, not endings. You imagined growing old together, not one of you disappearing while still alive.

It took a long time for you to accept the dream you wished for. How could you have known reality would be so different from that initial fantasy? You don’t blame yourself for your wish to be with him. It was as real to you then as your struggles are to you now.

Your aunt’s words carry a much heavier weight now than they did forty-plus years ago. Even though you love Frank and have no regrets, the burden you carry is real, but so is the love you felt and still feel for him. It’s simply a different life than what you imagined.

Sometimes fulfilled wishes continue unfolding long after the moment they come true.

You often ask yourself if you could go back, would you have made the same wish? You probably would have. Your love was that strong; your connection that deep. You learned that some burdens are the natural consequence of loving someone long enough.

With no regrets, you move forward not just because you have to, but because you still deeply love him.

With all my love,

Your future self, Cindy

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you.

“Be the change you want to see in the world” is a quote that has inspired me. The exact phrase “be the change you want to see in the world” was actually coined by American educator and social innovator Arleen Lorrance in 1970. The quote is widely, albeit incorrectly, attributed to Mahatma Gandhi. While Gandhi never used this exact wording, the misattribution stems from his similar philosophical writings.
I’ve always believed that meaningful change begins with the individual. Too often, people wait for the majority to speak first before standing up for what they believe is right. But the majority is built one person at a time. Every movement, every social change, every challenge to injustice began because someone was willing to act before it was popular or safe. If everyone waits for someone else to go first, the majority never forms. Real change happens when individuals choose to become the first voice rather than another silent observer.

Prompt for Discussion

Has a wish of yours ever come true in a way you never expected? How did it change your life?

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

Subscribe now

"The Little Things You Do Are a Big Deal" by Liza Wyles

Victoria — Tue, 07 Jul 2026 08:37:47 GMT

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

Letters from a Caregiver.

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

Subscribe now

Today’s ‘Letter from a Caregiver’ is by

I met Liza earlier this year when I came across her publication, “WriteLiza”. Her article “Welcome to WriteLiza! Reclaiming my title as ARTIST through caregiving and creativity” resonated with my efforts to not just define my bespoke version of thriving, but to bring my whole self to each moment.

“I arrive on set as a caregiver and it empowers me to advocate for cast and crew in my role. Care and creativity are entwined for me. It is how I can show up as truly myself and do my best work.” - Liza

I recommend learning more about Liza’s work as an intimacy coordinator and how, in her words, “her caregiving and creativity lives intersect and inform one another.” I’ve enjoyed her humour and appreciate the different frames that she’s presented about care and caregiving.

Bringing Caregiver Energy to Set as an Intimacy Coordinator. But I’m not your mother.

“I didn’t know I might be good at caregiving until I was tasked at doing so. And I don’t think I’m “meant” to do this. I simply am able to understand that help and support cannot come at the expense of another person’s dignity. Whether they’re doing a nude scene in a film, or sitting in a hospital gown with an IV port, waiting to have their brain imaged for signs of tumor recurrence, everyone deserves as much agency as they can command.” - Liza

Thank you for your letter, Liza.

Author’s Bio: Liza Wyles is a writer and intimacy coordinator in Queens, NYC. She is a parent to two teens and a caregiver to her husband, Scott, who was diagnosed with glioblastoma in 2024. She launched WriteLiza in 2025 to share how her caregiving and creativity lives intersect and inform one another. Her essays and humor have been published in The New York Times, Scary Mommy, Romper, and Self, and she has written and produced TV series for AMC Networks, Disney, and Marvel. Ask her anything about Star Wars and 80s New Wave music.

The Little Things You Do Are a Big Deal

Dear 26-year-old Liza at NYU Langone Health Hospital on that hot summer day,

I see you in the room with your mother and aunt, surrounding your grandmother in the bed. The nurse asks loudly: “Are these your girls? How many do you have?”

My grandmother smiles: “Just three,” she answers, looking at each of us.

She is wrong. She has two daughters. I’m her granddaughter. Except not on that day.

You were there, filing her nails. She always had manicured nails, painted bright red or shimmery peach. She did them herself, the Revlon bottles at her bedside, next to the lamp and ashtray. But they were ragged now. She had tried to escape the night before, wrestling with the safety bar on her hospital bed, and tearing her nails in the process. You’re filing them down to get them smooth and even and safe. You’ll do your best. But her nails won’t look the same.

This act will stay with you. It is something you can do. It is all you can do at that moment. It will be enough. It’s the last memory you have of her alive.

It does you good to remember how to do these small things in big circumstances. When you become a parent, the skill is handy. Wet wipes at the ready. Plastic bags to catch vomit. Notes with smiley faces in lunch bags.

In 2024 you will need to do big things. Cancer will require it. It has you driving your husband to the E.R. in the middle of the night while you’re on vacation, and it will keep coming up with new challenges. How to talk to your children about glioblastoma (“Don’t Google it!”). How to advocate for care that falls outside surgery and radiation and chemo and painkillers but is just as essential. How to keep the lights on when neither he, nor you, can work in the wake of his diagnosis and ongoing treatment.

You will find the small things you know you can do well: keeping a dedicated notebook of everything “cancer,” stowing travel toiletries at all times so you can stay at the hospital (and you will, for over a week) asking your parents to care for the kids and making sure they have their insurance cards and your son’s Epi Pens. You try to delegate the rest, like meals and housekeeping, to friends and family who want to help.

And looking back, it’s all these small things that supported the big things. The practice is in the small bits. You might have always known that. Maybe this is why you amused yourself in math class in middle school by listing outfits, in detail, you dreamt of wearing. Pages and pages in the back of your looseleaf, filled with descriptions that read like shopping guides at Benetton and The Limited.

Others may call it low-hanging fruit. Doing the easy stuff. Because you don’t get recognition or reverence for the small things. Glioblastoma is a big disease. You need to match it with big gestures. And that is how your husband has been facing it. Six weeks of daily radiation and chemo post surgery, followed by a year of monthly rounds of chemo that made him tired and turned eating into a chore. But he persisted; daily walks, exercise videos, and full days of remote work once those six weeks of daily treatment were over.

Heroism is what’s called in to fight cancer. It takes heroic efforts. You are not a hero in that sense. You are below Big Energy out there battling the disease at center stage. You’re in the wings of its performance. Running the power cables, securing the safety ropes, cueing the background.

You know people want to help. They always let you know. Sometimes they go ahead and do something without asking, and that is the best. It’s not always the actual thing that helps, but it’s the behavior. It’s them knowing you don’t have the time and bandwidth to manage the team of helpers. So when two boxes of Baked by Melissa cupcakes show up at your door, it’s not what you wanted or needed, but it will be exactly the right way to help.

And you will see that all the people who have come to help are there by design. A testament to the years you and your husband put in at work, and outside the office, to cultivate meaningful connections. Not through grand gestures, but in small ways: walks around the neighborhood, a coffee, a zoom venting session, a rant about the state of movies over text.

A thousand small points of light will illuminate the path to go where you are most needed.

I don’t mean to be unkind by calling these acts “small.” Unfortunately the toxic work culture our generation has grown into will perpetuate a hierarchy of labor that will relegate caregiving to the bottom rung. Even within the caregiving spectrum, there is an order of significance, when viewed from the outside.

I have to implore you to dismiss that.

As you meet other caregivers–and they will all be so additive to your journey–you will learn that from the inside, there is no structure of importance. It all matters. From keeping the bathroom stocked with toilet paper, to picking up his prescription refills, from managing appointments on the calendar, to getting on a reasonable payment plan, from arranging rides for the kids when you can’t do it, to giving up washing dishes because the way you rinse annoys him and he has the right to be annoyed by small things when he’s out there fighting the beast. It’s all caregiving. It all matters. It all adds up to be what sustains a family when cancer barges in.

When you launch your Substack in late 2025, writing from the intersection of care and creativity, it will be because you have gathered all these small bits of experience and realized how big an impact you could have on communities you’re a part of. The artist community. The caregiving world. The parenting group. The midlife diaspora.

Your instinct to reach out and take someone’s hand, to file their nails, to guide them across the street, to anticipate a radio-oncologist’s reading of a scan, is not low-hanging fruit. It is the root of kindness, where only good things can grow.

Love,

Future Liza (July 2026)

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you.

I saw (the first, but not the chronologically first) Star Wars in 1977 and my creative self came online in that movie theatre. I knew I wanted to do that: write and direct films. Yes, all the special effects were awesome, but I was five, so I didn’t have a lot of context to understand how remarkable they were. What drew me in were the characters: they felt so real. They played off each other in such specific ways to their personalities. My biggest take-away was that humor was embedded in all the space drama, and I think that taught me that life is funny even when you need to save the galaxy.

Prompt for discussion:

What’s a small gesture that made a big impact in your caregiving life? It could be something you did, or an act of someone else.

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

Subscribe now

"You Have to Receive in Order for the Circle of Love to be Complete" by Kaeli Hansen

Victoria — Tue, 30 Jun 2026 06:44:43 GMT

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

Letters from a Caregiver.

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

Subscribe now

Today’s ‘Letter from a Caregiver’ is by Kaeli Hansen

I met Kaeli via her publication “Caregivers Count” in early 2025.

During our network forum, Caregiving as a Spouse/Partner Kaeli shared this intro-context to her caregiving:

“My beloved first husband died after a courageous and gruelling battle with stage IV throat cancer. Most recently, I have been the primary caregiver for my second husband, Kurt, for the past four years.”
Having had a TBI (Traumatic Brain Injury) myself during my first husband's cancer was really difficult, and after his death, I met Kurt, who became my caregiver. Then suddenly, he had 5 strokes, and everything changed overnight.

You can read more from Kaeli at . I recommend reading:

Caregiver Role Reversal. When Your Caregiver Becomes the One Who Needs the Care
When the Caregiver Gets Sick: Giving Yourself the Same Grace You Give Everyone Else
I finally ate the “wrong thing” for someone whose tummy is not yet accustomed to Ecuador. It made me think deeply about my own vulnerabilities, including disability, and the one thing that can happen to any of us—illness. But caregivers can’t always get a day off. I haven’t perfected self-care; it’s still a struggle for me sometimes, but if you can relate, continue reading for some possible ways of coping.

Yes, Kaeli and Kurt are now in Ecuador. I recommend reading about their experiences of travelling, the healthcare system and day-to-day living.

Thank you for sharing your letter with us Kaeli. I know how difficult it must be to relive the emotional rollercoaster of caring for Sean.

Author’s Bio: Kaeli Hansen is a writer, caregiver advocate, and coach whose work sits at the intersection of caregiving, creativity, and consciousness. Drawing on more than thirty years of family caregiving experience, she supports caregivers and creatives through her coaching practice at kaelihansen.com. Her emerging initiative, Root and Return, offers nature-based programs for caregivers, creatives, and spiritual seekers. She is completing a Master of Arts in Transpersonal Psychology at Sofia University and is currently writing When You Love Someone Who Is Ill: A Caregiver's Honest Guide.

You Have to Receive in Order for the Circle of Love to be Complete

Dear younger me in Fairfield, Iowa, 2015—the year everything changed…

I know life seems to be going great. You should feel at ease with how things are going, but a gnawing in your gut tells you something is not right with your beloved husband, Sean.

In about a month, despite an internal medicine doctor and a specialist saying he is fine and just has a sore throat, you will know something is terribly wrong. He will be collapsing before your eyes. When you two go to a different doctor, he will call you back immediately and order you to go to the University of Iowa hospital by ambulance if you don’t have a car. It will be that urgent! Your intuition will be confirmed, but it will be extremely upsetting, as if an elephant were suddenly sitting on your chest.

When you both arrive at the University hospital, the young doctor will examine Sean’s mouth and, without hesitation, bluntly deliver the news: it is cancer. You’re going to feel like you’ve been punched in the gut, but you will try to hold it together for him. He will need you, and you will feel this is not about you at all, but about him. Nothing else will matter, except being with him. So, you will do what you do in a crisis and spring into action, using your research skills and past caregiving experience to help him. But you will be really scared and wonder, “Will it be enough?”

Cancer is not unfamiliar to either of you — you’ve walked alongside family and close friends through it and watched too many of them not survive. So when that word lands in the University of Iowa ED, it carries the full weight of everything you’ve already witnessed.

You and Sean have always been caregivers for others and have been reluctant to ask for or accept help unless someone was about to die, in which case you’ve relented. You want to be the one to give, and being on the receiving end feels uncomfortable. It’s likely a coping mechanism in response to past trauma, making you reluctant to be vulnerable. Your lifelong identity as a helper to others is threatened when you are the one in need of help. Needing help feels like proof that you are not enough.

When you are riding home after an 8-hour day of scans, appointments, and tests, your inner voice will whisper, “You have to receive in order for the circle of love to be complete.” You will get the message and think you are heeding it when friends offer so much help with meals, healing tips, fundraisers, and more while you’re still at home in Iowa. However, after a few weeks, you two will leave for Los Angeles to seek treatment for Sean and accept help only when people volunteer (which will be a lifesaver at times for you both). But you will refuse to ask until the last few weeks of his life.

Somewhere in the recesses of your mind, you believe that asking for help is a sign of failure. He will live for almost 2 years, which will be a miracle with stage IV cancer, but it will be an extremely difficult 2 years that will also include managing his mother’s care. You won’t feel you can ask for help, but you need to — otherwise you will be wrecking your health.

People will want to help and are only waiting for you to ask. Most people aren’t sure what you and Sean may need or want, and the best way to protect your mental, emotional, and physical health is to ask for help. You have friends in LA who love you and Sean and are ready to help. It’s not a failure to ask for it!

Furthermore, it’s okay not to be okay. You are not alone. You don’t have to “be strong” or be heroic. It’s okay to be brokenhearted. It’s okay to be tired. It’s okay to need help from someone else. You are loved and supported. People can be with you, but you have to be willing to ask. Even though you are not sure you can live without Sean, you will. You still have much to offer the world. You might not love yourself much right now — receiving love, even your own, doesn’t come easily yet — but please know that this will change.

Love

Kaeli (2026)

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you?

"The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart." — Helen Keller

Prompt for discussion:

When your role shifted — from spouse, child, partner, or friend to caregiver — what did you discover about asking for and receiving help along the way?

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

Subscribe now

"I Can’t Do This Any More" by Cooky Howitt

Victoria — Tue, 23 Jun 2026 07:54:35 GMT

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

Letters from a Caregiver.

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

Subscribe now

Today’s ‘Letter from a Caregiver’ is by

When I connected with Cooky earlier this year, I was blown away by her extreme parenting. I think I felt a deep connection to the long, fraught rollercoaster we had caring for my Dad. When there was no sleep, and we were walking on eggshells, primed to call an ambulance.

I highly recommend reading Cooky’s articles and, in particular, these two: Welcome to Extreme Parenting and Highly extreme parenting PDA and Norovirus: a delightful partnership.

Both give us a better understanding of Cooky’s caregiving. I’ve learnt a lot through reading Cooky’s articles. Her writing is funny and light and at the same time raises awareness about the realities of caring for a child, now a young woman who has Special Education Needs and Disabilities (SEND).

For example, I wasn’t aware of PDA (TBH I only know the acronym as ‘public displays of affection’!). Cooky shared that PDA, Pathological Demand Avoidance, is

“a profile of autism in which certain everyday demands, normal or mildly irritating to you and me, make the recipient literally panic. They go into ‘fight, flight or freeze’ mode and respond accordingly. To me, cleaning my teeth is a routine annoyance: to Olivia, it’s a life-or-death demand which she has to fight with every fibre of her being.”

A very different PDA from the one I knew! It opened my mind and cinched my heart when I thought of what this meant to caregiving for Olivia.

Author’s Bio: Cooky Howitt lives in Exeter, UK, and is a mum of two young adults including Olivia, 19, who has complex special needs. Cooky started writing Extreme Parenting last September in response to a health crisis of Olivia’s, which knocked their world completely off its axis. She’s continued writing it as Olivia has recovered, and now it’s mostly a diary of joy, musings, and everyday mild peril. When not doing extreme parenting, Cooky is a career coach for her company Flourish Career Coaching, a vocation that she absolutely loves.

“I am eternally grateful to Victoria for finding me here on Substack, and bringing me into this amazing and supportive community of fellow parent carers. She works tirelessly to bring carers together, and her website ‘Carer Mentor: Empathy and Inspiration’ is full of useful tools, resources and general wisdom! One of my points below is how lonely I felt while Olivia was ill, I wish I’d known about this community then, although I probably wouldn’t have had time to connect with it.” - Cooky Howitt.

My sister gave me this last year to remind me that it’s what I usually practice. [On a black kitchen countertop is a white mug with a blue pattern. Within that pattern are the words “Relentless Optimism” in white]

Dear Cooky of September 2024,

I’m writing this to you from 2026 but I’m never going to send it because actually, you don’t want to know what’s going to happen to you over the next year. If you DID know, you probably wouldn’t believe me, it’s so crazy. And anyway, it is the not knowing, the hope, your natural optimism, that will keep you going. Ignorance is bliss in this case my friend.

The only thing that I DO want you to know is that you will get through it. And you should be incredibly proud of how you do it. Hang onto those two things as hard as you can.

Your optimistic world view is about to be smashed off its plinth.

It’s only just started kicking off this September of 2024. And it’s so cruel because you’ve been waiting for this moment for 20 years. You’ve finally moved back to your home county of Devon, after pining for it since your children were born. But your eldest George is starting at Bath University this month, so it is a good time for him.

Your youngest, 18yo Olivia, is trickier. She has Down’s Syndrome, autism (PDA profile) and ADHD. She is non-verbal and still in nappies. She had a wonderful school in Kent, amazing carers and a great gang of friends. You knew that moving her would be hard, but actually you are about to discover that will be the least of your worries.

At the moment, you have just landed in Devon, and it’s lovely to be back. It’s not ideal, you are renting temporarily and the house is old, damp and mouse-infested. It’s at the bottom of a deep dark valley. There’s going to be a lot of rain over the next 6 months, which the cobb walls will soak up like a sponge.

Already after only a month you can see that Olivia is not happy, and you’re pretty sure there’s something physically wrong with her. It appears to be bowel related (she is gluten intolerant) so that’s your best guess, but she can’t tell you and has no idea herself how she feels so it’s a guessing game. Or maybe she’s just upset by the move?

Cooky, you’re wrong on all counts! It’s gynaecological. You will finally realise this in December. The medical establishment will take a further 6 months to be convinced.

There is no new school for Olivia arranged for this September, they are all full. You have found an independent college that looks perfect and amazingly does have a space, but in the end Olivia won’t start there until next January as the LA1 will deliberately drag their heels on the funding. At the moment you are full of false hope that it’s happening imminently.

I’m not going to spell out the day-to-day misery as Olivia’s illness develops, it’s all recorded in my Extreme Parenting Substack, but here is your year at a glance, so brace yourself my love:

Cooky, there will be three main challenges to your natural optimism. You haven’t got over any of them yet, and may need some help in doing so.

1. Losing faith in the medical system

The gut-punching main thing is that before this experience, you assume - like most other people in the 21^st century in a wealthy western country - that there is a safety net for anyone with an acute health problem. Someone to catch you. The NHS is under pressure, sure, but it’s still there, free for everyone. This turns out not to the be the case for a person with severe special needs. Every time you visit the hospital, it will be like they have never seen anyone like Olivia before, they won’t know what to do with her, or how to treat her, so they basically won’t treat her. They will sedate her, try her on the pill, then suggest that it could be mood related, PMDD2, maybe somehow linked to her learning disability?

She won’t get a scan until July 2025 (7 months after you first alert the gynae department to an urgent problem). She wouldn’t have got the scan at all if you hadn’t pushed and pushed and pushed. Just before they take her down to theatre, they will say ‘we’re not expecting to find anything’.

They will find something. And how. She will have been living with an infected fallopian tube for at least a year. Untreated, it will have caused other complications - organs moving including a twisted ovary, huge adhesions forming affecting her bowel.

She will take over 2 months to recover, during which time the pain will continue, and you will have no idea if the surgery has worked fully or not.

2. Exhaustion

Cooky, you are not as young as you were, and you will feel ancient by the end of this. The sheer physicality of taking care of a big, strong, bloody-minded young woman who hates to be touched at the best of times. Who can’t sleep when she’s in pain. Often for the entire night. Who lashes out. Who is bellowing and roaring. Who doesn’t understand why you can’t fix her.

If I tell you now, that you be will living this hinterlife for over a year, you simply won’t believe me. You won’t think it’s possible. After 2 weeks of extreme behaviour from Olivia, you will think “I can’t go on”, but you will have to go on for another 50 weeks at least. That doesn’t sound doable but you will somehow, somehow crawl there.

Two years later, the hypervigilance is still with you, it’s a form of PTSD and tbh you probably should go and get some help with it.

3. Loneliness

The final big thing to blindside you will be the loneliness. Although friends and family love you and give you heaps of moral support, nobody can actually DO anything. No-one else other than you and Matthew can look after Olivia when she’s screaming and smashing things. She can’t go to respite like this. In the next couple of months, she will physically attack two very experienced carers. Mostly it’s going to be just you, Matthew and Olivia in the house, all wide awake and frantic for days at a stretch.

The people who do manage to cut through and actually support you? The Learning Disability Health team whose existence you’re not even aware of yet. When they call, welcome them with open arms. They are wonderful people who will listen, believe you, and never give up on your girl. You will also have a fantastic GP and an excellent social worker. These people will back you up with the hospital, to ensure that she gets that much-needed scan.

The end

In early September 2025, you’re going to dream that you are talking to your beloved mum (dead for 10 years now), the only grandparent who could look after Olivia. In the dream, you sob to her, “I can’t do this, I need your help, please please come back, I can’t do it anymore”. And your mum smiles at you, her beautiful, brilliant smile, and she says “But Cooky, you ARE doing it, you’re doing a great job, you don’t need me at all.” It’s so vivid and real, it’s exactly what she would say if she was alive, and you are reassured, and wake up with tears on your cheeks.

At the start of October 2025, everything will finally begin to settle down. Olivia will be healing properly now. She was not be ‘cured’, there will still be wobbles, but nothing like the previous year.

Olivia last week 😊

Relentless Optimism

The good things that will come out of this ordeal:

You will buy and move into your dream home half-way through this saga, round the corner from your childhood best friend. You will love living there.
When Olivia gets better, she will be happier than she has ever been. She now has incredible carers, the best college in the world, and spends 90% of her time in the sea. Living her best Devon life.
Your son will do well at university, and make friends with a fantastic Exeter gang of young people, two of whom will work as great carers for Olivia
Your marriage will be stronger: you will be amazed throughout by Matthew’s resilience, his calm, and his love for his daughter. You will get through the year by being a team, and what a team, I reckon we could cope with anything now.
(Obviously the best thing) Bursting to communicate your experiences with Olivia, you will start writing a Substack in September 2025. It will be immediately cathartic, and connect you to a wonderful community of like-minded souls, other SEND parents and carers around the world.

Finally, being completely honest, I suppose that if I could say one thing to myself in September 2024, it would be

“IT’S AN INFECTED FALLOPIAN TUBE YOU BERK, GET HER TO A GYNE SURGEON ASAP”

But I guess we got there in the end.

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you?

I was inspired to start Extreme Parenting by listening to an episode of the We Care podcast, Care Fully Considered (Misery Olympics, 2/9/25). I love the organisation and the podcast gets great guests. This episode featured two journalists who said ‘We need more everyday stories from carers’. I suddenly thought ‘Why not me?’

And I’m eternally inspired by the Penguin Skipper in the animated film Madagascar, who shouts “Don’t give me excuses, give me results!” then slaps whoever he’s talking to around the head with his flippers. This is basically my mantra for life, and I think it helps me when advocating for my girl.

Prompt for discussion:

Have you ever thought, “I just can’t do this any more”?
What happened next?

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

Subscribe now

LA = Local Authority

Premenstrual Dysphoric Disorder (PMDD) is a severe, cyclical hormone-based mood disorder. Affecting about 5% of menstruating individuals, it causes debilitating emotional and physical symptoms during the 1-2 weeks before a period (the luteal phase).

"You Thought You Had to Choose" by Maria Messer

Victoria — Tue, 16 Jun 2026 07:27:50 GMT

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

Letters from a Caregiver.

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

Subscribe now

Today’s ‘Letter from a Caregiver’ is by

When I read Maria’s ‘Welcome to Holding Both’ article at the end of 2025, I was captured by the grace and permission of her words. We can be many things at once.

I resonated with her remapping of expectations and orientation back to what matters most: love. There’s something about the architecture of her words that creates more space for us to breathe as caregivers and with life in general; we can feel it all, be messy, be wordless and still feel whole.

There are moments that shift our perspective and outlook on life, but when someone we love is involved, our whole world changes. Thank you to Maria, for sharing her letter today.

You Thought You Had to Choose

Dear Maria, fall of 2010,

Stop looking at the monitor for a minute. Sit. Breathe in. Out. Again, breathe in… out.

I know you can’t really sit. I know your whole body is angled toward that crib, listening for the next thing to go wrong. But humor me. I’m you — fifteen years up the road — and I don’t get long, so let me hold your hand the way you wish someone would hold yours right now.

You’re at Children’s Hospital. Day three, maybe four. It began with a shake as he woke from a nap — not a soft newborn startle, something else, something that tightened your chest before your mind could catch up. A 911 call. Then a second seizure no one could stop, and then an emergency flight here. The medications that finally quieted his brain are heavy enough that they’ve taken back the things he only just learned. He can’t sit up. He can’t hold his head steady. He can barely open his eyes. And you are standing over him asking the question that is going to live in your chest for a very long time.

Did permanent damage happen?

I’m not going to answer that. Not because I’m cruel. Because the answer was never the point, and some things you have to live your way into.

Here is what I will tell you.

You walked into this thinking you knew the road. ADHD. Because cocaine. That was the story you wrote — the only one you knew how to tell. ADHD felt manageable. Predictable. Almost ordinary. It came with scripts and strategies and a general sense of what to expect.

Oh, Maria. The story is going to get so much bigger than that.

Not worse. Bigger. You’re going to learn words you don’t have yet — executive function, sensory dysregulation, language disability, autism, epilepsy, generalized anxiety, and others I’m not going to hand you tonight because you don’t need to carry them early. You’re going to become fluent in a language no parent wants to be fluent in. And here’s the part I most need you to hear, the part that took me years:

Carter learning to need all of that does not make him less than the baby in that crib. It makes him more. More than any single word. More than any meeting, any report, any prognosis. He refuses, his whole life, to shrink into one story. So will you, eventually. You’ll just fight it first.

You already know something you don’t know you know.

Last Christmas — Carter barely six weeks old, the snowy parking lot, the county building all lit up, the visit his birth mother didn’t come to. You sat in that cold car and felt two enormous things at once. Devastated and ecstatic. How could she not come for him? and, almost in the same breath, oh — we might actually get to keep him! Grief and hope, neither one erasing the other, both of them true, both of them yours.

You thought that was just a strange, hard moment.

It was a lesson. The first one. Life is going to teach it to you again and again until you finally have language for it, and when you do, it will become the truest thing you know. So I’ll give you the words now, early, as a gift:

Holding both.

You don’t have to choose. You are never going to have to choose. Hold the grief and the joy. The mother and the professional. The love for the child in front of you and the grief for the future you imagined. The certainty you crave and the not-knowing you actually get. Life will not ask you to pick one. It will ask you to hold both — and then hold them again — and then again.

You will. I promise you, you will.

I have to be straight with you, because you’ve always preferred the hard news straight.

There are years coming that are going to break you open. Carter’s name is going to start showing up on incident reports and court dockets. You’re going to sit in rooms and hear words about your son — elopement, aggression, dissociation, non-compliant — that don’t match the sweet, busy, tender boy you know at home. You’ll feel torn down the middle, living in the gap between two Carters, certain one of them must be the lie.

Neither is the lie. They’re the same coin. Same boy. Both true.

And underneath it, there’s going to be a feeling you’ll mistake for shame for a long, long time. The shame of being a special education professional who can’t decode or manage or fix what’s happening in her own house. I should be able to hold this. I do this for a living. You’ll call it exhaustion. You’ll call it confusion. You won’t call it what it is.

It’s grief. Grief for the life you imagined. Grief for the plan. Grief that does not mean you failed — it means you loved something enough to mourn it honestly.

I want to save you the years it takes to learn that. I can’t. You’re going to have to live them. But I can stand on the other side and tell you they end somewhere survivable.

You’ll learn — much later than you’d like — that your body keeps the score whether you want it to or not. That the grief you don’t put down somewhere will find another way out of you. That you are allowed, you are required, to take care of yourself as fiercely as you take care of everyone else. There’s a book coming for that. There’s a meme, of all things, that’s going to bring you to your knees in the best way. There’s a phrase — radical acceptance — that you’re going to resist with everything you have, because accepting feels like quitting, and you have never once quit anything.

Radical acceptance won’t ask you to stop loving him. It’ll ask you to stop pretending that loving him means denying the rest. My child is wonderful. My child has significant needs. Both are true. Both belong. That’s not surrender. That’s expansion.

There’s more I’m not going to tell you.

I won’t tell you about a marriage that bends under a weight no one talks about, or what it costs to leave a life that no longer fits in order to step into one you can’t yet see. I won’t tell you about a second boy who’s coming — you don’t know about Mason yet, and you need to know he’s coming, because he is going to answer a phone on a highway one day when no one else can reach his brother, and he is going to make you laugh when you’ve forgotten how.

And I won’t tell you about a morning, fifteen hundred miles from your son, when you have to do the hardest thing a mother can do, and walk back into a quiet house afterward. I’m leaving that one alone. Not to scare you with mystery — to spare you the counting-down. Things are going to be as they’re meant to be, in their own time.

I’ll only tell you this about it: you survive it. And the quiet you’ll be so afraid of turns out not to be emptiness. It’s something you haven’t felt in years. You are still his mother. The love does not need to be in the same room to be real.

Before there was language, there was love. You’ll write that someday. It will be the truest sentence you know about Carter and you. Keep it.

Now. The reason I really came.

Somewhere in the middle of all of it — the hard years, the unraveling, the rearranging of everything you built — you’re going to sit down and do something you have never done in your life.

You’re going to write yourself a love letter.

It won’t even be your idea. A therapist will hand it to you as an assignment, and you’ll want to roll your eyes — because by then you will have spent your whole life as your own worst critic. You are fluent in the harsh things. You should have known. You should be handling this better. You’re not doing enough. You speak to yourself in a voice you would never, not once, use on someone you love. That is exactly why she gives it to you. Write a letter to yourself, she tells you, the way you’d write to someone you love.

So you do. For the first time in your life, you turn that kinder voice toward yourself. It feels small and enormous at the same time. And I want you to have it now, early, so you know what’s waiting:

The work you have done and are doing is incredible. You are strong, resilient, ambitious, tenacious, tender, loving, patient, and kind. I love who you are becoming and cannot wait to see what the future holds. It is bright and ALL things are possible. You showed up for yourself when you had to. You’re doing the HARD work your body, heart, and soul desperately need. Keep going, you’re worth it!
— Me

Look at what you do in it. You name yourself strong, resilient, ambitious, tenacious — and in the same breath, tender, loving, patient, kind. You don’t separate them. You don’t rank them. You write them in one sentence because they belong to one person.

You.

That letter is real. It’s a beginning. But hear me, because this is the thing I most needed to learn and the thing I most want to hand back to you: a beginning is not an arrival. Worth is not something you’ll discover once and then carry effortlessly into every room and every morning after.

Worth is a practice. Daily. Imperfect. Some days with confidence, some days through gritted teeth. You don’t earn it by holding everything together. You don’t lose it when everything falls apart. You’re worth something not because of what you build but because of who you’re becoming — and you are already, sitting in that hospital chair, becoming her.

So keep doing what you’re doing, love. Listen to the doctors and also to your gut. Call your sister. Make the spaghetti. Borrow the car seat. Say all the I-love-yous, every single one, every chance you get — bottle the delight.

You won’t get all the answers. You’ll learn to live without the map. You’ll stop being so afraid of the gray, because the gray turns out to be where your actual life lives — complicated and tender and full of contradictions you finally stop trying to resolve.

The beauty of gray. It was always the answer. You just have to live your way into it.

And here is the thing I almost didn’t see coming, sitting where you’re sitting tonight: Carter becomes the best teacher you will ever have. Not in spite of all of it — through it. He teaches you, without a single lecture and most of the time without words, how to love your whole life exactly as it is. Before there was language, there was love. He will prove that to you a thousand times.

So this is what he teaches you, in the end. To hold both. You’ll hold the grief and the joy. The mother and the professional. The certainty you wanted and the not-knowing you got. The rest and the devotion. The strength and the tenderness. The love for the child in front of you and the grief for the future you imagined. You’ll stop asking which one is the real one. They both are. You don’t have to choose. You never did.

Hold both. And then hold them again. And then again.

I’m in you and with you, through the pain and the joy that’s coming. And one day, we’ll be the same person, standing in a quiet kitchen with a cup of coffee, still here. Still his mother. Still his student. Still becoming.

If I could leave you with a single word, it would be that one. Stay. Not because it’s easy — because it’s the bravest thing you’ll ever do. You choose this life, and yourself inside it, over and over.

Again. And again. And again.

With everything, Me — today

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you?

In my early twenties — before I knew anything about anything — I had a line from “The Beauty of Gray” by Live tattooed on me. I loved the song. I loved how it sounded. I had no real idea what it was actually trying to tell me: that the world is not black and white, that a real life is lived in the colors in between, and that the gray is not the absence of an answer — it is the answer. I’ve spent my whole life since living my way into those words. They were a map I couldn’t read yet, inked onto a young woman who still believed she could plan and prepare and achieve her way to certainty. The song knew before I did.
And years later, Bessel van der Kolk’s The Body Keeps the Score gave me language for something I’d been living inside without a name. Grief doesn’t stay in the mind. It moves into the body and makes a home there — in the hypervigilance, the exhaustion sleep can’t touch, the bracing you stop noticing because it has become your normal. Eventually the body insists on being heard. Between a song I didn’t understand at twenty and a book that finally explained me decades later, I learned the same lesson twice: pay attention to what you’re carrying, and where you carry it.

Prompt for discussion:

Who in your life has taught you something real without ever using words?

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

Subscribe now

"The Suitcase by the Door" By Vicki Tull

Victoria — Tue, 09 Jun 2026 07:44:46 GMT

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

Letters from a Caregiver.

Since September 2025, thirty-two letters have been written over three seasons.

This Summer Season so far

Each letter will be published on Tuesdays during the Summer Season.

Today’s ‘Letter from a Caregiver’ is by

I recently met Vicki. In her article The Architecture of Belonging she writes about “The Turning Point”

In 2022, my husband was diagnosed with Alzheimer’s. The decline was swift. The man who had written “Welcome home” was slowly disappearing.
For four years, I became his caregiver.
Medication schedules replaced dinner conversations. Vigilance replaced rest. Our world narrowed.
And quietly, almost imperceptibly, I began to disappear too.
The house that once felt like a sanctuary began to feel heavy with memory.
Community felt distant.
Even my own reflection felt unfamiliar.

Read more about Vicki and Lee at The Tender Warrior, for example:

Over and Over Again

My heartfelt condolences to Vicki. Thank you for your letter.

Author’s Bio: Vicki Tull lost her husband to Alzheimer’s over seven years — four of them as his primary caregiver. Somewhere in those years, she stopped recognizing herself in the mirror. Today she writes The Tender Warrior, published three times a week for anyone who has loved someone through loss and is ready to belong to themselves again. Because after caregiving, coming home to yourself is not the end of the story. It is where the story begins.

The Suitcase by the Door

Indialantic, Florida. September 2023.

Dear Vicki,

You just got home from Venice.

Put down the suitcase. Leave it by the door. I need to talk to you.

I know what you’re feeling right now. The guilt is sitting on your chest like something physical. You keep replaying it — the plane, the seatbelt, the look on his face. The way the Venice crowds overwhelmed him before you’d even left the airport. The 90-degree heat. The streets you’d imagined walking together, hand in hand, the way you used to. The hotel room where he spent most of the time in bed while the Adriatic glittered outside the window, indifferent and beautiful.

You went because you wanted to feel normal again. Husband and wife, traveling together, the way you were in Alaska the year before — when he stepped off the plane and became himself again, adventurous and alive and fully there. You wanted that man one more time. You needed that man one more time. And so you booked the trip, and you hoped, and you got on the plane.

I can still feel the guilt and regret and disappointment.

You did not do this wrong. Hear me again. You did not do this wrong.

You did it out of love. Out of the very human, very reasonable refusal to let go of something before you absolutely had to. You were not in denial — you knew things were changing. You just weren’t ready to stop reaching for him. That is not a character flaw. That is what it looks like to love someone the way you love Lee.

But I also want you to be honest with yourself about what this trip showed you, because you already know it and you’re trying not to look directly at it.

This was the last one.

Not because you failed. Not because you chose wrong. But because the man who bristled against the seatbelt on that plane is telling you something about where he is now, and part of loving him — the hardest part — is learning to hear what he’s telling you even when he doesn’t have the words for it anymore. The cramped seat terrified him. The crowds were too much stimulation. His world is getting smaller and no amount of love or planning or hoping can make it larger again. That is the disease. That is not you.

The guilt you’re feeling right now — hold it gently, but don’t let it move in permanently. Guilt has a way of masquerading as love, of convincing you that punishing yourself is the same as honoring him. It isn’t. You took him to Venice because he was the love of your life and you weren’t ready for the adventures to be over. There is nothing to be ashamed of in that. The regret is real and it is yours to feel. But that is not the whole story.

This is important for you to know.

You have been showing up for Lee every single day with more love and steadiness than most people will ever be asked to summon. You have been his wife, his companion, his anchor, his calendar, his safety. You have navigated behaviors and moods and moments of confusion and moments of terrible clarity — his and yours — and you have done it without a roadmap, largely without help, largely in silence. That is not nothing. That is everything.

And now you are home from a hard trip, sitting with a broken heart, and I need you to do something that does not come naturally to you.

Let people in.

Call the friends who have known you for decades. Not to perform okayness, not to give them the edited version — the real one. Tell them what Venice was. Tell them what you’re carrying. The research will tell you that caregivers who maintain connections outside the caregiving role fare better, stay more resilient, and show up more steadily for the people they’re caring for. But forget the research for a moment. You need your people right now. Let them be there.

And start building your network — not someday, now. Medical professionals who can explain what’s coming. Care professionals who’ve walked this road with other families. People who can see Lee in the moments you can’t. You have been trying to solve this alone, and Alzheimer’s is not a problem that can be solved alone. The strongest thing you can do right now is ask for help.

One more thing.

There will be more grief ahead — I think you already know that. The trip to Venice is not the last loss. There will be the day his needs become more than you can meet at home. There will be the day you realize you are his caregiver now, not his wife, and you will write that in your journal in the specific, precise language of someone trying to make sense of the unspeakable. There will be the day they tell you your presence upsets him and it’s better if you stay away.

Each of those days will ask everything of you.

But here is what I know from where I stand, looking back at you sitting there with your suitcase and your broken heart and your jetlag:

You are going to be okay. Not untouched — you will be changed by this, permanently and in ways you can’t yet see. But changed into someone more patient, more open, more clear about what matters than the woman who booked that flight to Venice hoping for one more normal trip.

The love you have for Lee is not diminished by what this disease is taking. It is proven by it. Every day you show up — every seatbelt you gently fastened, every moment of confusion you quietly smoothed over, every time you answered the same question again — that is the love. That is what it looks like now.

Start by trying to put down the guilt. You took him to Venice because you loved him. He knew that. Even now, even as so much slips away — he knows that.

Come home to yourself. Your people are waiting.

With all my love,

Vicki

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you?

I keep coming back to The Snow Child: A Novel by Eowyn Ivey. It’s a story of resolve, resilience, love, acceptance and loss - and it transported me to the wilderness of Alaska where family and home and community are all you have sometimes.

Prompt for discussion:

There is often a single moment that divides caregiving into before and after. It could be something very small that marked the transition. Something very personal to you and your spouse. What was that moment for you?

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

Subscribe now

"The Word I Didn't Know I Was" by Marina Ortiz Caiuby

Victoria — Thu, 04 Jun 2026 08:35:13 GMT

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

Letters from a Caregiver.

Since September 2025, thirty-two letters have been written over the past three seasons.

This Summer Season so far

“Caregiving is a continuous evolution of my love, trust and courage.” by Victoria

Today’s ‘Letter from a Caregiver’ is by

I met Marina earlier this year. While our caregiving and life circumstances are very different, I recognised common themes, a resonance in her articles. I think any caregiver will feel that resonance, too. Those feelings of uncertainty, our reactions to the pitying looks, and our attempts to reconcile with the uncontrollable, while still trying to erect some sort of stable scaffolding for our loved ones. I get it; several others will too.

Thank you for your letter, Marina, and for your important work helping other caregivers. I hope more caregivers connect with you and your articles, especially spouses/partners and mothers.

I encourage you to read more of Marina’s work at The Together Hub:

Author’s Bio: Marina is a mother of two young children and has been married for over ten years to a husband living with autoimmune diseases, a journey that led to a liver transplant and revealed her identity as a caregiver. With over 15 years of professional experience and having lived in four countries, she brings both depth and perspective to everything she does. She now channels both worlds into The Together Hub, a company dedicated to bringing caregivers out of invisibility.

The Word I Didn’t Know I Was

Dear Marina, of April 2025 in Lisbon,

Knowing you as well as I do, I know you would love to meet me. You’re probably wondering who I am and how I know you so well, so let me tell you straight away: I’m you, from the future.

Wow. I know you have so many questions. And as you always say, there are things you know will eventually happen, but if only you knew when, that would make all the difference to your anxiety.

So I’m here to ease some of that anxiety. I’m not going to spoil everything, but I will tell you this: the next 12 months will be some of the most challenging you’ve ever faced. And yet, they will also be the period in which you change the most.

Change is neither inherently good nor bad. But in your case, it is inevitable, and ultimately, it is beautiful. You will get to know yourself deeply. You’ll become introspective in ways you’ve never been before. And you will be so genuinely kind to yourself throughout it all that it’ll be a joy to witness.

I know what you’re living through right now isn’t easy. I know that receiving the news that Gu will be added to the transplant list, without knowing when, is terrifying. I know the thought alone is already triggering a panic attack. But here’s one thing I can tell you with certainty: the anticipation is harder than what you will actually feel when you get there.

Right now, the word “caregiver“ has never crossed your mind or your vocabulary. But in just a few months, you’ll be talking about it every day. It will become your work, your identity, your purpose.

Which brings me to the first big news: you will leave your current job.

You were never truly happy there, deep down, you knew it, but you were always afraid to admit it, let alone act on it (the end-of-month paycheck had a lot to do with that). I won’t tell you everything that unfolds, but I will say this: that chapter will become one of the greatest contributors to your journey of self-discovery.

Leaving wasn’t an easy decision. You had been feeling unlike yourself for a while, and it was seeing your kids notice it that became the turning point. You felt weak, alone, and like you weren’t good enough. But Marina, leaving that job was one of the bravest, strongest things you have ever done.

Because for the first time in a long time, you put yourself and your wellbeing first. And this is something you’ll learn throughout this year is not just important, it is essential. Not only for your own survival, but for the wellbeing of everyone around you.

I’m writing these words and reading them back to myself, hoping I’ve finally learned this lesson. Because the 2025 version of you didn’t fully know it yet. And honestly? Sometimes the 2026 version of me still forgets. 🙂

Now, let’s talk about friends, because some of them will prove just how close they really are.

Even the distance from João and Marcela won’t diminish the love you all share. You’ll find moments together, you’ll see each other, and you’ll still miss each other, and that’s okay.

And Paulinha. We all know she’s already important, but this year she will go above and beyond for you and your family, and she’ll do it while being pregnant! Yes! The news came at exactly the right moment: a burst of joy in the middle of everything you were all going through.

This will also be the year you feel closer to your family than ever. They’ll visit more often, and their support will carry you. You’ll feel a little irritated by the pitying looks and saddened by the worried eyes, but all of that will be eclipsed by the warmth and love you’ll feel and give in return.

And Gu, Pipa, and Pepe. They are everything, you already know that. But this year, you’ll feel it even more deeply.

You’ll want to make everything perfect for the kids, to shield them from what’s happening. Let me tell you: you don’t need to. Not even a little. You are going through this too. You have fears too. This is your story as much as it is Gu’s. So let yourself feel it sometimes. Let it be imperfect.

You’ll be demanding of Pipa, she’s the oldest, and you’ll lean on that without always meaning to. You’ll also start to notice Pepe growing up faster than you expect. But try, whenever you can, to just be with them. Laugh when they make a mess at the dinner table. Play with them. Be silly.

Because here’s what I want you to know: you will miss singing Aquarela to Pipa. You will miss the nights Pepe falls asleep on your arms, because by now, he falls asleep on his own and doesn’t want to be held like that anymore. Enjoy the little moments. They pass, and then they’re gone.

There’s something else about your family that you should be proud of and never take for granted: you never let the challenges become bigger than you.

Throughout this entire journey, you and Gu chose to be larger than the disease and whatever it brought with it. You kept living, really living, despite everything happening around you. You understood this as your reality, as something you couldn’t change. And so instead of collapsing under it, you decided to carry on alongside it. That was extraordinary to witness.

Let me close with a few spoilers, because you’ve earned them:

You will start your own business
You will help people feel heard and seen
You will consider moving to another country (I know, shocking)
This will be one of the years you travel the most
You will travel alone with Pipa and Pepe, a four-hour flight, to a country you’ve never been, and you will feel so powerful for doing it (as you should)

This letter has grown long, and I could keep going. But part of what you’ll learn this year is to live in the moment. You’ll have to face some of the biggest challenges of your life to grow into who I am today, and I wouldn’t take any of it back.

So I’ll close with the most important thing I can tell you:

Gu was added to the transplant list on November 30th. I know you can’t imagine it right now, but that day will be one of the happiest of your life. Not a day of fear, a day of relief, of possibility, of hope. The transplant was no longer a question of if, but of when.

And because I want to be kind to myself, and to you, I’ll say one more thing:

Gu has received his transplant. And he is recovering at home. 🙂

You’re going to be okay, Marina. More than okay.

By Marina, 2026

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you?

Atomic Habits by James Clear. Throughout this year, it became more important than ever to understand the power of small, consistent habits, and how the right ones can quietly hold you together when everything else feels uncertain. Daily exercise, for example, was both life-changing and, in many ways, life-saving.

Prompt for discussion:

When did you first realise you were a caregiver, and did you ever give yourself permission to also be the one who needed care?

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

Subscribe now

"Caregiving is a continuous evolution of my love, trust and courage."

Victoria — Thu, 28 May 2026 09:45:08 GMT

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

Letters from a Caregiver.

Since September 2025, thirty-three letters have been written over three seasons. Many thanks to all the caregivers who have shared their letters with us.

A new season of letters begins today.

For context: In 2019, my Dad had numerous compounding health issues. The highest priority one was his congestive heart failure, which was destabilised by bladder cancer. He was peeing Bordeaux, having urinary tract infections, and in turn these were aggravating his rheumatoid arthritis and stability. Atrial fibrillation episodes and falls were unpredictably frequent, usually in the depths of the night. Vascular dementia made this more torturous for him. Shouting to stop us from calling paramedics and crying with sad exhaustion. Dementia discombobulated his reasoning. In the last months of 2019, my mother was also undergoing cancer investigations.

“Caregiving is a continuous evolution of my love, trust and courage” by Victoria

Dear younger me of 2019, in full action mode

R-E-S-P-E-C-T.

I look back at all we did then, and I’m in awe of all you’re doing.

I’m not here to change anything or to tell you what to do. I’ve learnt so much over the years of caring for Mum and Dad, and from you. Thank you.

As I write this, I’m mindful of making any assumptions, generalisations, or sweeping statements. Every situation - yours, mine, others, whether at the start of caregiving or deep in the long days of no sleep and stress - they’re all different. Pieces may look similar, themes may resonate, but I struggle with blanket instructions and advice. I think our biggest learning is to never assume we have the answers for someone else (and that includes you, dear younger self) - no matter how much we want to prevent someone from feeling the pain we’ve felt, we can only offer up our experience as an example, and share ideas for others to try out. Maybe what helped us can help them, but who knows!

Humans and relational dynamics will make every experience messy and non-linear. We can easily trap ourselves in self-built disappointments and frustrations.

Image by @david hayward The Naked Pastor

Caregiving tasks compete with our presence as their daughter. We want to be more present, but we’re chasing a prescription, an appointment or a letter. And let’s not overlook all the household and financial administration required to maintain their everyday welfare. After securing this scaffolding of care, the hands-on caring verbs of organising, preparing, showering, and cleaning take precedence over the “less productive” ones of ‘just being’: sitting together, listening and curating quality memories. Sure, we do our best to weave these into caregiving, but sustaining the scaffolding can steal our time, energy, and peace of mind!

We know how blessed we are. You could choose to stop working and be with them. You and Mum are tag-teaming Dad’s care in 2019. We try to curate quality time and memories in the smallest moments of the day. And still, you’re becoming more aware of how caregivers are informally recruited to be the unpaid glue of the fragmented healthcare system. Connecting what could get missed. Questioning to confirm the foundations of our understanding. We don’t want to prove a negative - what would happen to the scaffolding if we didn’t do what we do! We smooth the path and become that path for continuity. We hold the scaffolding, upright and in place.

We champion and advocate because we already know what happens when we don’t emphasise Dad’s needs. During a hospitalisation, a water jug is too heavy or too far out of reach to quench a thirst. A food tray would come and go without being eaten because a tired body and arthritic hands couldn’t get the food from the tray to his mouth. Our caring doesn’t stop at the hospital entrance. In an overworked, understaffed hospital, we camp out by the bedside to care.

Time warps. You already know hyper speeds. You’re starting to feel the mounting dread, hypervigilant and primed for another paramedic call-out. These are inevitabilities. Not ifs, but when. The anxiety-fear around spikes of speed and drama hangs heavy. Caring for Dad in 2019 is about walking on eggshells. Living on the thinnest, sharpest edge of fraught and still continuing.

You might not feel like you’re doing anything well, but you’re the one grading yourself harshly. From where I am in the future, you are surviving and doing your best for both of them and yourself. Like I said, RESPECT. What you’re doing IS love in action, even if you’re having to redefine what that means for you with every single sunrise and sunset.

That love is fuelling your courage to continue caring despite the fear and frustration you feel inside. Don’t second-guess your love in action; how you’re caregiving. Question the scaffolding, challenge default assumptions and ask someone to go a little further to help you. Trust your choices.

Today, caring for Mum, the calmer waters are becoming murkier. While less fraught than caring for Dad, time is warping again. There’s a molasses, a darkening with scanxiety, waiting for discussions, recommendations, and more cancer treatment. These suspended days of blurred time stretch out pinned only by the next appointment. Hanging low, suspended with uncertainty. Never quite touching the ground.

Even in these stretches, there’s continuous movement; a learnt agility and responsiveness to act. More confident, for sure, but we’re still learning and adapting. We have to. It’s another part of courageous caregiving. We’re curiously learning how the scaffolding is evolving, so we can recalibrate and act.

I’m discovering something new about how to ask for medical support or request an action. Our GP practice has evolved in how it triages, responds, and operates. It’s not the old school, cradle-to-grave relationships, but that would be impossible these days.

I’m the monitor and report system, trained in what looks normal, or not, for my parent. Primed to activate our practice or the hospital specialists. My writing skills are being honed via eConsults: 500-character online requests. Words matter. Red flags trigger a fast triage, so I keep asking, “What do I need to look out for if this is escalating?” and lean into words and phrases that can help me close potential patient-physician communication gaps

It’s an iterative loop of learning—adapting by doing, whilst caring. The scaffolding is evolving, but we’re still the glue and the interface, identifying potential weak spots and filling gaps.

It’s easy to feel the warped tension of time with all the tasks. Weaving all the caregiving, monitoring, reporting, and my own needs within each day could easily distort my loving frame of intention.

But love in action and courageous caregiving also include how we treat ourselves as caregivers. I’m sharing all this with you because in 2019, you’re setting boundaries, prioritising, and making hard decisions. It’s not just for Mum and Dad’s benefit, it’s for yours too.

When expectations are swirling, breathe deeply, hold space and choose what matters most in this minute. You know what that is, hon. Trust yourself.

The power of being zen with incomplete tasks.

Being zen with an unfinished task is a new practice I’ve been trying to learn for a while now. The incompleteness would grate on my former corporate self. The completer-finisher, list- and checkbox-trained project manager, would baulk at the laundry half-folded or the dishes half-washed. But I’ve learnt that trusting myself to get it done.. eventually… is okay.

The rebellious, anti-productivity nature of an unchecked box has its own intoxicating freedom. To suspend my urge to finish something this minute. To be ok with frustrations that may swell. These internal self-imposed challenges to ‘get-it-done’ don’t have to steal my energy, or our random moments of joy. Who set this race against time, anyway?

It’s not the completion of the task in this exact minute that matters. When time’s being warped, we have to make more meaningful trade-offs. If that’s synonymous with doing laundry, fine - but maybe it’s about choosing what you need to wash first and trusting you’ll get to the others later. Don’t let the lure of an empty laundry basket distract you from what really matters!

Some of my frustrations, whilst caregiving 24/7, can come from my own conditioned sense of starting and finishing something in one sitting. But there are only 24 hours in a day, and our energy is already spread thin. Am I worried it won’t get done,… really?

It’s okay to want to feel in control and productive. Seeing a clean kitchen or a freshly made bed can give us a sense of order and satisfaction in an overwhelmed or out-of-our-control situation. So let’s choose the best time to do it, or better yet, feel if the moment is now or not and move on. That’s how I ended up cleaning the kitchen worktops and sink at 10 pm. Who dictates the time things need to be done? Let’s be our own kind of unconventional!

It’s also okay to choose yourself instead of the laundry or the dishes. It’s not just about getting up earlier to journal - although that works some days. You can choose to spend an hour in the day writing while Mum’s sleeping, one ear open to hear her.

Mindful, meaningful moments need courageous choices, especially when the demands on- and expectations of- our time and energy are increasing.

There is a weirdly powerful zen in walking away from the unfolded towels on the chair, taking the big thermos mug of tea, switching on your go-to playlist, and spending time writing. You may not be able to write or journal for a long period, but it’s the choice, a vote for yourself, that matters. Of course, the towels got folded later…But this way, I reclaimed some time for myself!

Everything you’re doing now, in 2019, is giving me the trust I need to continue now. Our experience, agility, and years of caring help me zero in on what’s most important. Even if no one else gets my choices, you do, and that’s all that matters.

There are no perfect answers. We’ll keep curiously learning and discovering, hon. It’s one way we’ve learnt to move forward with the fear and uncertainty - we don’t judge the emotions, they just are.

You know what matters most, despite the ongoing recalibrations and time warps. Trust yourself. Your caregiving is about making brave choices and love in action. Remember that the choices to dedicate time to yourself and your passion projects are integral to that, too. They’re not an afterthought. Curiosity and empathy need to be directed inwards as well as to others, to meet our version of meaningful caregiving; that’s how we keep evolving and living our truth.

Keep going, hon.

Love you,

2026 Me

Prompt for discussion:

Are you okay with leaving a task incomplete?
Do you catch yourself getting frustrated when you're called away mid-task? Where’s the frustration coming from and why?

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

Subscribe now

Four Seasons of 'Letters from a Caregiver'

Victoria — Wed, 27 May 2026 07:40:00 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 34 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

The Summer Season 2026

The articles so far

“Caregiving is a continuous evolution of my love, trust and courage.” by Victoria
“The Word I Didn’t Know I Was” by Marina Ortiz Caiuby
“The Suitcase by the Door” By
“You Thought You Had to Choose” by
“I Can’t Do This Any More” by
“You Have to Receive in Order for the Circle of Love to be Complete” by Kaeli Hansen
“The Little Things You Do Are a Big Deal” by
“When Wishes Come True” by Cindy Roman, who writes

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

"Caring and Being ‘Difficult’" by Lucy Furlong

Victoria — Mon, 25 May 2026 11:38:02 GMT

Hello! If you’re new to Carer Mentor, welcome! Thank you for being 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 with Twenty-One Letters.

This Spring Season so far

Today’s ‘Letter from a Caregiver’ is by Lucy Furlong

I met Lucy at the start of 2025. A poet, teacher, writer and walking artist, I was intrigued by her labyrinth walking and her work. Do you know the difference between a maze and a labyrinth? I didn’t. A maze is a puzzle with dead ends and branching choices, while a labyrinth features a single, winding path that leads to the centre and back out again without any wrong turns. A labyrinth “draws you in,” as Lucy says in her World Labyrinth Day article, “Have you ever walked a labyrinth?”

Lucy publishes “Setting Sundays” on Substack, and I recommend exploring her website. As well as her MFA in creative writing, she specialises in poetry, and holds a Postgraduate Certificate in Learning and Teaching in Higher Education (PGCLTHE).

Here are two of her articles you may like to read:

Thank you for writing this letter, Lucy. I know you’re spending a lot of your creative energy and strength advocating for your son’s needs. Keep going. I’m sending some strength and support your way.

These days, caring means we have to be “difficult.” ‘Difficult’, ‘annoying’, whatever anyone says, trusting our gut and advocating for our person’s needs gets things done.

Author Bio: is a Forward and Pushcart prize nominated writer, poet and walking artist. Her work has been widely published and exhibited, is taught as part of the Open University’s MA in Creative Writing and has featured in The Guardian and on BBC Radio 4. The second edition of her poetry map, Amniotic City, is available from www.lucyfurlong.com

Caring and Being ‘Difficult’

24^th May 2026, London, UK

Dear Lucy,

Your son has just turned 19. 19 years old! He’s a young man! It made me think of when he had his 15^th birthday, back in May 2022, and how much life has changed since then for us.

As you know, back then, you had been back in the UK for just over 6 months, having returned from Ireland with S in December 2021, after getting stuck there during the pandemic. It was a difficult decision to return because it meant leaving Wexford where you loved living and also your husband (S’s stepdad) having to go back to the States.

But you had to go back. S was very poorly, and the GP in Wexford thought it might be long covid but no one really knew. He had been ill for months after contracting covid earlier that year, was exhausted, underweight and desperately unhappy, aged 14. Dad was at home in Tolworth (where we had lived with him until we got stuck in Ireland in March 2020) and was also very poorly, having undergone surgeries, chemotherapy and a significant amount of radiotherapy in the summer of 2021, which was now taking a serious toll on his health and wellbeing.

S’s 15th birthday in May 2022 was his first back at home since we went on holiday to Ireland in March 2020 and got stuck in the lockdown there. We were unable to return because Dad had just started six months of chemo and we couldn’t travel in the lockdown, and we were worried we might infect him with covid. So we stayed in our holiday home in Wexford for six months (instead of five days) and then moved into a rented house on the edge of Wexford Town in September 2020. We stayed until we travelled back to the UK in December 2021, having by this point been vaccinated against covid.

S’s 15^th birthday was, you remember, a lovely, sunny May day. You had been to the local party shop in Surbiton the day before and bought two enormous silver foil number balloons, a 1 and a 5 to make 15, and a bunch of others all inflated and tied with colourful ribbons, which you’d had to carry back to the car, and stuffed them down between the seats where they were hidden until the following morning. You got up early the next morning, got the balloons out of the car and took them into the living room, putting them by the fireplace along with birthday bunting and a pile of presents and cards.

Even this year, at the age of 19, he still got a massive balloon with Happy 19^th Birthday S… I suppose at some point soon I’m going to stop…maybe. Anyway, remember what was really special about his 15^th birthday? He could eat proper food again.

At the beginning of March 2022, he was formally diagnosed with Crohn’s disease and had to undergo what his consultant called ‘nutritional therapy’ which meant a liquid diet from March until the beginning of May that year. This was a special powder formula called ‘Modulen’ which S’s consultant had actually been involved in developing, and which would sustain him nutritionally for the approximate eight weeks he took it – and he could eat NOTHING else.

He tapered on to it and off it at the beginning and end, but for many weeks he drank five bottles of this powdered formula, mixed with cooled boiled water, and banana flavour Nesquik and did not eat anything solid at all. The diet was extreme but designed to rest his inflamed bowel and give it a break so that it might heal, and the Crohn’s might go into remission. Other then the claggy banana flavoured liquid, which he drank through a straw so he tasted as little of it as possible (the banana flavour made it just about palatable) he was allowed to chew bubble gum, so you were bulk ordering every flavour of Hubba Bubba you could find online.

Four years later, and I still have no idea how he managed to stick to it but he did. He’s a tough kid. He’s had to be. If he hadn’t been able to do it they were talking about tube feeding which sounded very difficult indeed. Do you remember making up the bottles every day? Boiling enough water, measuring the powder, cleaning the bottles…it became routine.

At the same time you were wondering what to eat as you felt bad about carrying on eating a normal diet while he had to battle his way through this difficult but vital Modulen therapy. So you decided you would mostly eat soup, a sort of liquid therapy of your own to show solidarity – but still a breeze compared to what he had to do. You were making big batches of soup to last through the week and trying not to eat in front of him, although most of the time he was staying in his bedroom.

By his birthday S had started eating proper food again, beginning with half a chicken breast on one day, a small boiled potato on another day, and building up his ability to eat solid food one step at a time, slowly over the couple of weeks before his birthday, while at the same time he gradually weaned off the Modulen.

The other very special part of this birthday was that Dad / Granddad was back at home, in fact came out of hospital where he had been since March, the afternoon before S’s birthday. While you had been dealing with the hospital appointments for S and liaising with various people in various institutions to try and get him the help he needed to get him back into education, you were also trying to look after Dad. The shock you and S had when you arrived back from Wexford in December 2021 to find he had lost significant weight, was struggling to eat and generally struggling – it was a big change in him, and even though expected was very hard to see.

I’m not going to write about everything you went through with Dad here, you know what happened. The summary of this particular part of his story, is that he was rushed into hospital in the early hours of the morning of the day S was due to start the Modulen. He had fallen and you had called your sister and she had gone in the ambulance to the hospital with him as you couldn’t leave S.

Dad ended up being put on a dementia ward where he should never have been, and for a week after was treated appallingly. This was to the point where you were so worried about him, and the fact that no one was listening to you when you were telling the staff that he had colon cancer, that in desperation you went through all Dad’s recent hospital discharge paperwork. You were looking for any possible contact information, and you emailed the PA to one of the surgeons that had operated on him earlier in the year.

You know this was one of several times where you had to be resourceful and think of a possible way around a situation which seemed unresolvable – and where Dad did not thank you afterwards but actually complained about how difficult you were and how cross he was at the fuss you’d made. As you know, the day after you wrote the email, the surgeon appeared on the ward where Dad was, and where at the time your uncle, Dad’s brother, was visiting. So you got to hear from your uncle what happened:

“Then we heard a loud voice saying “Where is my patient, Mr Furlong, who I believe is here?” and the surgeon arrived and said he wanted to examine your father. Your dad was not pleased that you had emailed the PA and was complaining about you, but I stopped him saying you had probably done it with his best interests in mind….”

The thing is, Dad didn’t want any fuss and didn’t want to lose an iota of control over his life. He was fiercely independent and stubborn to the last, and it must have been so difficult for him to deal with his outspoken and ‘difficult’ daughter making that fuss on his behalf. Maybe that’s why he vented about you to other people.

I want you to know that you did the right thing because I know you’ve doubted yourself and been made to doubt yourself. If you had not sent that email, they would not have discovered that Dad needed emergency surgery, which he had two days later – as you know this surgery was successful, if risky. In fact it was so risky he said “Goodbye, just in case I don’t come through” in a brief telephone conversation just before he was operated on.

But he did come through it – he went into ICU and was very ill, had delirium, was diagnosed with covid which he had contracted in the hospital and you had to make a case for him being resuscitated if necessary. He eventually got better and was moved to another unit down the road where he slowly regained his mobility, having completely lost it during the weeks before and after surgery. It was a long haul, but he recovered. If you hadn’t sent that email what would have happened? He would have stayed on that dementia ward or been sent home – the surgeon said he could have died at any time.

Instead, he came home the day before his beloved grandson’s 15^th birthday and got to see family and friends (and he stuck around for S’s 16^th birthday too). Somehow you dealt with all of that at the same time, and being called difficult and being accused of making a fuss and goodness knows what else. Being ‘difficult’ seems to be a requirement when you are caring for someone. Being liked - it turns out - is not.

But what is important is trusting that you are doing the right thing for that person, even if you are being told it is a waste of time, or you shouldn’t. You have to trust yourself and your intuition – because you’ve been proved right so many times, even if no one appreciated it, even your Dad who you loved beyond all measure. You know there are things you wish you’d done things differently – noone’s perfect -but you always tried your best. So be kind to yourself and know that the effort and determination you put into getting S the support he needed (aka being ‘difficult’) paid off.

And there are plenty of people who like you and love you.

Love,

Me xxx

The Closing Rapid Fire Questions from Victoria:

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

I practice mindfulness: I focus on my breath, taking slow breaths in and especially out. I think about my feet on the floor and try to stay in that moment and tell myself it will be ok and we will get through it moment by moment.

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

I have an amazing friend, who has had several battles with cancer over the last few years, and three of her stand out qualities are: resilience, determination to continue living her best life, her generosity of spirit

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

“In the midst of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.” ― Albert Camus

Prompt for Discussion

Are there times when you’ve had to be a ‘difficult’ person?

Postscript from Victoria:

If you’re walking around London, you may want to explore the “Amniotic City” (2nd Edition) by Lucy

“Furlong’s poems are recognisably sited; potential liturgies for re-enactment. They are proposals, less bent on cutting passages than on following clues to alignments of desire in patterns immersed in the terrain; an interweaving of intimacy and otherness.”- Phil Smith, The Routledge International Handbook of Walking

The next Summer Season of “Letters From A Caregiver” starts on Thursday.

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

Subscribe now

"Stay Hydrated" by Bud Hager

Victoria — Thu, 14 May 2026 06:32:19 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 Bud Hager

While our caregiving situations are very different, I always feel a deep resonance with Bud’s articles. Perhaps it’s because his words articulate certain feelings, thoughts or situations I’ve struggled to voice myself. I don’t know if you’ll feel the same way; every caregiving situation is different. I’m just very grateful that you can discover more of his words through his letter today.

I found his writing in 2025 at “Our Little Kartoffel”.** He also writes at The Courageous Parents Network, which is, in his words, “a fantastic resource for exploring the world of raising children with disabilities and rare genetic disorders. Be sure to visit their site for more insights!”

** “I’m a dad to an extraordinary daughter—a little human with a slew of medical diagnoses layered over a child full of quiet wonder. Her primary diagnosis is pachygyria, but her life defies the limits of any medical binder. We call her Kartoffel. Our little potato.” - Bud Hager

Author’s Bio: Bud Hager goes by his second middle name (he has three) because it’s easier to remember and baristas never misspell it. Along with his wife he is a caregiver for their daughter, Emma, who has a rare neurological disorder. He believes in taking an active approach to advocating for his child and others like her. To this end, he sits on various advisory councils at Rady’s Children’s Health (RCH), volunteers on consulting and directing boards for various non-profit centers, and lends his writing skills where he can. He is also a professor of psychology and has a small private psychotherapy practice that is mostly filled by pro bono work for parents of newly diagnosed children.

Stay Hydrated

Dear Me,

You are sitting in a hospital room pretending to understand what the nurse is saying.

You are nodding at phrases like “bolus feed” and “extension set” and “flush before and after medications” while staring at a laminated diagram of a child’s torso with a g-tube in it. The nurse is patient. You hate that. Patience, in moments like this, feels humiliating. You want someone to acknowledge that this is absurd. That your daughter should not require a demonstration and laminated instructions to be fed.

You keep thinking the same stupid thought: We are really doing this. And you mean this literally. You aren’t being dramatic or waxing existential. You are really about to go home with syringes and formula and a backpack full of medical equipment because your child cannot reliably eat by mouth anymore.

You’ve already been doing this parent caregiving bit for years now. You even got yourself a decent little following on social media where people repost your content saying ‘THIS!’, one of your videos even got 3 million views! It’s amazing how all of that will inflate your sense of certainty. You thought you understood caregiving before this.

You did not.

I do not mean that cruelly. You had already learned things most parents never have to learn. You could discuss seizure rescue meds while making coffee. You could read pulse oximeters at three in the morning with one eye open. You had mastered the strange choreography of specialists, insurance appeals, emergency departments, and developmental therapies. You and your wife had become competent in the way people become competent when the alternative is catastrophe. And you took pride in this. Not the suffering. The adaptation.

You believed that if you paid close enough attention, loved hard enough, researched thoroughly enough, stayed humble enough, then maybe you could outwork tragedy. Or at least negotiate with it. The g-tube will feel like the moment that illusion finally tears. Not because it is the worst thing that will happen. Trust me it isn’t and won’t be. I won’t insult you by pretending this is the hard part. There are future nights that will rearrange your understanding of fear so completely that this version of you would not even recognize them as survivable. But this is the moment you finally understand that your daughter’s life is not taking a temporary detour before rejoining the road you imagined. This is the road.

And you are furious about it. Furious for her, mostly. Though not entirely. You are also angry because you can feel your old life collapsing and you resent being the sort of person who notices that while his child is suffering. You are ashamed that part of your grief is selfish. Ashamed that another part is aesthetic. You mourn the ordinary future with the embarrassing sincerity of a man who once thought ballet schedules and spilled juice boxes would be genuine inconveniences.

You are also carrying another shame you haven’t said aloud yet.

You think you should have known sooner.

You replay meals in your head like game film. The coughing. The fatigue. The long stretches at the table. The way feeding became work for everyone involved. You are convinced there was some hidden test of parental attentiveness and you failed it.

There is a scene I remember clearly.

You are standing at the sink rinsing out a syringe. It is late. Hospital late. The flickering midnight where time no longer behaves correctly. You look down at the syringe and think: I cannot believe this is our life.

Then, because you are who you are, you immediately hate yourself for thinking it.

Because she is still here. Because she is laughing sometimes. Because she still reaches for your beard with her tiny hand. Because gratitude and grief have become roommates and you think admitting one betrays the other.

I am writing to you now because eventually you will meet wonderful people who will ask you to write a letter to my younger self. Apparently this is the sort of thing people do when enough time has passed. We imagine ourselves as older and wiser, standing safely on the opposite shore, calling instructions back across the water.

I certainly don’t feel wiser, definitely feel older so I got half the assignment down. Anyway, here is what I would say to you:

“You need to stop trying to force your old vision of parenthood onto your life.

You think your suffering comes from the medical complexity itself, but much of it comes from the constant comparison between the life you expected and the life you have. You suffer more in imagination than in real life and keep measuring your days against that imaginary standard and then wondering why they fail to match.

They never will.

Your daughter is not a corrupted version of the child you imagined. She is not a deviation from the “real” story. There is no hidden, better life running parallel to this one. There is only this particular child with this particular body and this particular laugh and this particular way of leaning her head against your chest when she is tired. Once you stop demanding that your life become something else, you will finally be able to see the life that is actually here.”

That sounds wise, doesn’t it? Clean. Finished. The sort of thing people underline in books.

As I write it I distrust it immediately.

Not because it is false, most if not all of it is true. Rather I distrust it because it suggests wisdom works like information. As though I could simply hand you a sentence sturdy enough to carry you through the next seven years.

I cannot.

You are going to learn almost everything the only way anyone ever truly learns anything: through repetition and embodiment and exhaustion and love.

No one could have explained tube feeding to you in a way that mattered before you stood at the kitchen counter at two in the morning trying to remember whether medications can be mixed into formula. No one could have adequately described the peculiar intimacy of keeping another person alive through routine. No one could have prepared you for how quickly medical equipment becomes ordinary. Or how dangerous that ordinariness sometimes feels.

And if I told you now that there will still be beauty ahead, you would misunderstand me and would imagine redemption.

I do not mean redemption.

I mean beauty in the sense of your daughter sitting in the morning light while formula slowly moves through tubing and the entire room becomes briefly, almost unbearably quiet. I mean learning not to rush these feeds just because you are tired. Learning that efficiency is not always the highest good. Learning that care can become distorted when you try to optimize every moment.

I mean eventually sitting down sometimes instead of treating your own existence like an emergency response. I mean realizing that rituals matter precisely because so much else cannot be controlled.

You will start making coffee less fancifully but drink it more meditatively. You will actually cook more even though you will have less time and more terrible days. You will notice weather again. You will do things like these because you will learn that despair is greedy and you discover you must intentionally leave something outside its reach.

You will also become deeply suspicious of the stories people tell about families like yours. The inspirational, warrior narratives with their neat little moral diagrams where suffering produces wisdom in mathematically satisfying proportions. You will understand why people reach for those stories. Catastrophe frightens us. Randomness frightens us even more. Inspiration, remember though, is in those doing the observing, not those being observed.

But your daughter was never placed on this earth to teach other people gratitude. And you’ll forget this but your life is not admirable because it is difficult, you do not have a monopoly on suffering, and just being the parent of a medically complex, fragile, disabled, dying child does not make you a good person. You have to do the good part.

Most days are not cinematic anyway. They are repetitive and absurd and more than occasionally boring in many ways. You will spend shocking amounts of your existence discussing stool consistency. This, too, is part of love.

I realize as I write this part that I have slowly stopped giving advice. If I am honest, you would not take it anyway.

If I told you that you survive this you would hear survival as victory, it’s not. Some seasons are graceful. Some are ugly. Some you endure badly. There is no final montage where the music swells and you become the person all this was supposedly shaping you to be. You remain unfinished, thank God. I’m not writing to help you prepare or reassure you. You cannot prepare and reassurance has a terribly short shelf life. I am writing because I think the closest thing we have to mentoring our past selves is choosing how we inhabit the present.

The man you needed back then was not someone with answers. You already had experts and pamphlets and discharge instructions and a billion parents on the internet with their version of advice. What you needed was someone who could sit beside you without turning your life into a lesson.

I cannot travel backward and become that person for you but I can try to become him now.

That’s all I have for you.

Best,
Bud

PS - stay hydrated, you’re going to cry, a lot

The Closing Rapid Fire Questions from Victoria:

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

I’m not sure I do. Fear and uncertainty are as much, perhaps more, a part of caregiving as confidence and clarity. Allowing fear and uncertainty to inform and instruct instead of trying to extirpate them has helped me love and care deeper.

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

Of course that someone is Emma: her wondrous talent for making conversation without making it entirely about her trauma, her complete inability to live de mauvaise foi, and her amazing ability for bringing people together.

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

“And in the end, the love you take, is equal to the love you make.”

Prompt for discussion:

Why does society feel the need to turn caregiving, medical complexity, or disability into a “lesson” for others and how does this narrative actually harm parents and caregivers by placing an unfair burden on them to be “good” or “heroic” rather than just human?

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

Subscribe now

"Leave It in That Room" By Khadra Awomer

Victoria — Thu, 30 Apr 2026 05:01:44 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 Khadra Awomer, author of “Dementia Who”

I met Khadra in December 2025. Her mother had passed earlier in the year. I realised she’d been caring for her mother for a long time—a courageous and harsh experience given the cruel realities of Dementia.

Khadra shares her personal experiences of caregiving and dementia research in her publication. Here are a couple of her articles:

Khadra’s letter is not just sharing soulful empathy with her younger self, but also an insightful study of her family dynamics and why she and they behaved as they did.

Thank you, Kat, for voicing what’s hard for some to recognise, let alone articulate. Your compassion and understanding shine, especially in these words —a quote from your letter:

“What you didn’t understand then was that this was the first time you stepped outside what was expected. Not just within the family, but culturally. You were asking people to face something they had been taught to hide.” - Khadra

No spoilers, except to say it’s beautiful to hear how you enabled creative, happy times for your Mum; a liberation from those dynamics and that room! Bravo.

Thank you for sharing your letter with us, Kat.

Author’s Bio: Khadra Awomer spent thirteen years caring for her mother through dementia. She writes about her caregiving experience, grief, and the complicated business of rebuilding life after caregiving. She now translates dementia research and news into plain English alongside personal reflections in her Substack ‘DementiaWho’

Leave It in That Room

Dear Kat

I’m writing to you just after the day everyone stood in Mum’s living room and told you not to take her to the memory clinic. You’d spent two years struggling to get her to this point and that day changed the way you cared for mum for a long time after.

You won’t forget this day, the argument, the shock of how quickly support disappeared, and the look on Mum’s face when the word crazy was said out loud.

You’re wondering whether you pushed too hard, whether you should have handled it differently, and whether being right was worth what it cost. You’re replaying it, trying to work out if there was a way to protect her from the fear she felt that day.

I’m not here to correct you or smooth this over. I just want to explain what you didn’t know yet about fear, and cultural expectations and how they shaped your caregiving journey.

At that point, you were living with mum, watching her closely, tracking small changes, noticing the repetition, the slips, the increasing falls, and seeing her trying to hide her confusion. You weren’t certain it was dementia.

You were scared it could be something else, something worse and more immediate. Luckily, mum allowed you to go with her to the doctors, and that gave you a chance to speak to them privately about your concerns.

Back and forth you went, appointment after appointment.

Eventually she agreed to a basic assessment. The doctor believed it was some form of cognitive decline and needed to escalate it to the memory clinic. Mum wasn’t having any of it. She was fine. There was nothing wrong with her memory. You didn’t know at the time how annoyed she was about some of the things she was asked. She thought she was being treated like a baby.

You were lucky the doctor had known you both for years and could see the changes that mum didn’t want to speak about. Then you did what you do best, researching everything about cognitive decline and looking at all the possibilities.

You thought you were doing the right thing by involving the family early. You laid out what you’d noticed. The same things they had seen, but not in the same way, day in day out as you did living with her.

You explained what a memory clinic was and why an assessment mattered. You believed that if they understood the process, they’d support you. When they agreed, you felt relief.

Because everything you had read said the same thing: bring support.

Months in advance of the appointment, you agreed who would go with you, and you started to drop in reminders to mum so she would get used to the idea rather than being surprised by it on the day. She was still able to retain information for a while back then.

What you didn’t understand yet was how much language shapes fear.

In our culture, there isn’t a word for dementia. The word we have doesn’t describe an illness. It labels a person. It turns something medical into something shameful. Something to hide. Families learn early to manage these things quietly, within the home. Back then you didn’t know of other families going through the same thing because nobody talked about it.

The day before the appointment, a family meeting was called. You thought it was to go over a battle plan for the day. Just logistics. Who would drive, what time you’d leave, how you’d manage the forms.

Instead, it became an argument. In front of mum.

You didn’t know yet how easily they would use her fears against you. You knew mum’s fear of scans, and that was pulled into the argument. Someone repeated something mum had said privately to them about the doctor’s questions she’d been asked before, how they felt small and embarrassing. All of this was used as proof that you were pushing her into something she didn’t need.

No one had bothered to learn what an assessment involved.

Then the memory clinic’s location became the focus. They’d moved from the main hospital to the other side of town, to a hospital with its own history. You tried to explain that it didn’t matter that it was in a separate building on the same grounds. You had worked so hard not to use the word everyone else used for that place.

But then someone said it.

“Mum, you’re going to the crazy hospital.”

And that was it.

You didn’t need her to say anything. You could see it. Her face changed. You knew you had lost that moment. Still, you didn’t stop. You said you would take her on your own, hoping she would still come with you.

But what stayed with her wasn’t your reassurance. It was that word. What you learn later about her fear of being left there will stay with you for a long time.

That night, she was frightened. You tried to calm her, but you were shaken too, and lay awake thinking about how easily fear could undo all those years of preparation to get to this point.

You replayed everything. The shouting. The words. You wished you’d pulled back. You worried about how much damage it had done to mum’s trust in you.

That was the moment you realised that family support was conditional. That when it came down to doing the hard stuff, you’d be alone.

What you didn’t understand then was that this was the first time you stepped outside what was expected. Not just within the family, but culturally. You were asking people to face something they had been taught to hide.

You weren’t wrong for insisting. You weren’t cruel for pushing forward. But Mum was hurt in the process, and that’s the part that kills you.

You will replay that day more times than you expect. You will wonder if there was another way to say it, another way to handle it. You will question whether advocating for her came at the cost of her trust, especially when you later learn how deeply she feared being left alone, locked up in that hospital.

That’s not on you. That was them making it all about their fears and using that to try to scare her into not going.

But what you didn’t see then was how much that moment shaped you.

You’ll see this pattern repeat over the years. Them stepping in, showing disapproval, saying outright that something shouldn’t happen when it was about mum’s care.

You didn’t become cautious later by accident. You learned it here. You learned to be careful about what you shared and with whom. You learned that they could step in with strong opinions, blanket judgments, without ever taking on the responsibility themselves.

And for a long time, that made you hesitate, held you back from doing things that were outside our family & cultural norms.

Until it didn’t.

You reached a point where the cost of holding back became too much. You could see what staying within those boundaries was doing, how much it was limiting her world, and yours. And once you saw it clearly, it became harder to keep justifying it.

You didn’t ask for permission. You didn’t tell anyone. You just started to change things, and you did it sneakily, some might say.

You made sure Mum did something outside what was expected every day. You found ways to get her out, to engage her, to give her moments that weren’t defined by fear or decline. Art classes. Singing sessions. Small trips. Places and mixed activities that would have been dismissed, disapproved of as ‘not culturally appropriate’, if you had told them about it. What we did might sound like hardly anything to others, but it was so much more to us.

And those moments mattered more than you realised at the time.

Her laughter. Her concentration. The way she created something from nothing with one hand in art class. The parts of her that were still there, still responding, still present.

None of that came from doing what was expected. It came from choosing her over what other people thought should happen.

You’ve carried that day for a long time. The guilt, the second-guessing, the feeling that you got it wrong for far too long. But you didn’t, you changed things. You were trying to do something that went against fear, to face the truth and move forward while everyone else was against it. That was always going to come at a cost. What matters is that you kept going anyway.

So leave the guilt where it belongs, in that room, on that day.

Because everything that came after shows you were never wrong about what she needed.

Kat 💜

The Closing Rapid Fire Questions from Victoria:

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

Research has been my main tool helping calm my fears by gathering a well-rounded perspective on each situation. I also rely on morning pages, where I pour out everything that’s on my mind, then tear the pages and let them go to reset for the day ahead.

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

There are people in my life whose courage just astounds me. I also admire one relative who is a fantastic peacemaker and has an amazing ability to build bridges. And finally positivity, that infectious optimism that inspires action and makes the hard work worthwhile.

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

Everything will be okay in the end. If it’s not okay, it’s not the end.

Prompt for discussion:

What did caregiving teach you about the people you thought would show up?

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

Subscribe now

"But You Will: A Letter to My Younger (Suddenly) Caregiver Self." By Tina Matras.

Victoria — Fri, 24 Apr 2026 16:52:00 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 Tina Matras

I met Tina last year. She was sharing articles about caring for her Dad. I was particularly drawn to how she made the holiday season and travel possible for both of them.

Her articles offer practical advice, tips and examples of typical caregiving situations. I recommend reading this article, the first of a series where Tina offers new caregivers hard-won wisdom. I’m New to Caregiving. Where Do I Start? Oh, Crap! I’m a Caregiver, Part 1: Practical first steps for caring for an aging parent or elderly loved one when you’re new to caregiving.

Author’s Bio: Tina Matras has been a caregiver for elderly family members for more than 25 years. After 18 years in corporate technical writing and editing, she stepped away to freelance as a ghostwriter and developmental editor—a shift that gave her both the flexibility caregiving demands and the freedom to pursue a longtime passion. She created to help anyone who’s found themselves in the caregiver role—often unexpectedly, just like she did.

But You Will: A Letter to My Younger (Suddenly) Caregiver Self

Dear Tina,

You’ll never be someone who enjoys talking on the phone. While your friends spend hours on the phone, you’ll prefer to talk in person because it makes conversations more real. But your dislike of using the phone will go from a simple preference to a blood-pressure-raising, shoulder-tensing response every time the phone rings.

That’s because two phone calls, years apart, will change your life.

The common thread? They’ll both throw you into unpredictable caregiving situations you never saw coming.

The first call will be a stranger announcing that your parents have just been in a car accident. And even though you helped care for your grandparents, including your grandpa with dementia, that phone call will be the one that truly makes you a caregiver because everything will depend on you from there on out.

Dad will suffer a traumatic brain injury that will leave him with anxiety and an inability to rationalize through tense or unexpected situations. His calm, go-with-the-flow demeanor will fade away, replaced with a man who comes to depend on you like a safety blanket more and more with each passing year.

Mom’s physical injuries will be minor, but her emotional and psychological injuries won’t heal. She’ll become afraid of everything and cling to you like a nervous toddler clings to her mother’s leg.

The second call will come 13 years later, and it will be worse. A doctor will inform you that your mother has stage 4 terminal cancer that has overtaken her body. The announcement will blindside everyone.

She’ll choose treatment, and while you will pray for a miracle, and believe God will do it, you’ll wonder every day if the treatment is worse than the diagnosis, because she will become so incredibly weak and sick.

The Crushing Weight of Caregiving

Once you get over the shock of that first phone call, you’ll think you can handle it. After all, you just spent ten years living and working in the gang-driven neighborhoods of inner-city Chicago. You’re used to middle-of-the-night crisis calls, emergency rooms, and chaos. You handled it with calm and rationality. But not this. This will leave you shaking and sobbing in your car more times than you can count.

Caregiving will consume your thoughts, steal your sleep, and send your hormones so far out of whack that your doctor will say, “I’m not sure how you’re still functioning. I’d expect you to be in the hospital with labs like these.”

But even though it will be the hardest thing you’ve ever faced, by far, you’ll find moments of joy, and you’ll get time for special moments with each of your parents that you wouldn’t trade for anything.

You’ll wake up some mornings one-hundred percent certain that you can’t make it through another day. But you will.

You’ll face decisions and contemplate each one, thinking that it’s the one that’s finally beyond your capability, and that you won’t be able to determine the best course of action. But you will.

You’ll have to learn how to care for a parent medically in ways you never could have imagined, certain that you won’t be able to manage it all. But you will.

You will do all of it, but not because you’re smarter, more capable, a hero, a super daughter, or anyone special. You’ll do it out of love.

You’ll learn most of it through trial and error. You’ll make mistakes. You’ll have victories. You’ll wish it would be over and then cry yourself to sleep for thinking such a thing because if it’s over, it could only mean one thing, right?

But even though you feel crushed beneath the weight that gets heavier with each passing year, you’ll look in the mirror one day and realize you’ve gotten stronger. It won’t look like bigger muscles or a more toned physique. You’ll see it in your eyes and your expressions. There will be a strength and resilience there that can’t be learned. It will be the kind that comes from years of doing hard things. Carrying that weight will build up your strength, not diminish it.

The Curse of Perfection

If there’s ever a time when we should be able to do something perfectly, it’s in parenting and caregiving.

But perfection is a myth this side of heaven.

Hear me when I say: Perfection is not your goal.

Mom was a defeated perfectionist, almost paralyzed by the curse of perfection in her later years. She knew she couldn’t do something perfectly, so she did nothing. And by the time she realized how detrimental that was to her and her loved ones, it was too late.

So she wisely and lovingly taught you not to be like her.

You’ll struggle with that because while you’ll understand that perfection isn’t the goal, you’ll feel like you’re throwing your hands up in defeat every time you accept less.

But you’ll learn to accept “good enough” because survival and your sanity demand it. And live by the mantra, “Just because something isn’t perfect, doesn’t mean it isn’t good.”

Three Words

I want you to learn three things before you’re 35 because they will get you through all that is to come.

1. Learn how to pivot.

“A usually marked change; especially: an adjustment or modification made (as to a product, service, or strategy) in order to adapt or improve.”1

Most of life doesn’t go as planned. Caregiving definitely does not. You’ll plan, research, strategize, and adjust. You’ll think, “Okay, this will work,” only to find that it works for a while or never works at all. You’ll learn to let go of anything that stops working or doesn’t work in the first place. And you’ll pivot.

2. Be flexible.

“Characterized by a ready capability to adapt to new, different, or changing requirements.”

This one’s almost funny. “New, different, or changing requirements.” You may as well get that tattooed somewhere on your body, because it will become such a part of your daily life. Every illness, injury, and diagnosis should come with a label: WARNING: Contents subject to change.

It doesn’t matter why your loved one needs care; whatever the reason, when you become a caregiver, you must be flexible with everything: Routines, abilities, disabilities, symptoms, side effects, safety measures, dietary needs, triggers, etc. It will all change dozens of times. You’ll drown if you’re not flexible.

3. Improvise!

“To make, invent, or arrange offhand; to make or fabricate out of what is conveniently on hand.”

You will plan for every eventuality. You’ll prepare ad nauseam. You’ll have everything under control. You’ll be ready for anything.

And then something will happen that you never saw coming.

Like the time Mom threw up in the car on the way home from her tenth chemo treatment. She’d never thrown up before until several hours later. She’ll be covered in vomit, with the smell making her continue throwing up.

So you’ll improvise.

You’ll see a Walmart just up ahead. You’ll park, run in, grab the first woman’s blouse you see, a bottle of soda, and a package of baby wipes. You’ll pay and be back in the car in ten minutes.

You’ll help Mom get changed, wipe the vomit from her face and hands. You’ll throw all the soiled things into the Walmart bags and toss them in the trash.

You’ll cover Mom with the blankets you always keep in the car, roll down the window, and hand her the 7-Up. Then you’ll continue driving home like nothing unusual just happened.

The ability to improvise allows you to be creative. You’ll learn to use whatever works and find solutions on the fly. You’ll become an expert at improvising.

Never panic. Panic is reactive.

Improvise. It gives you something to do, and taking action will help you manage the situation and your own stability.

And now for the most important thing I want you to know.

But God…

You will learn to walk with Jesus when you’re very young. And God will get you through so many things. But caregiving is where you’ll truly get to know His heart and let Him know yours.

There is a popular saying: God never gives us more than we can handle.

That’s not true. What is true is that He never gives us more than He can handle.

Caregiving is lonely. Caregiving is hard. Caregiving is emotional. Caregiving is exhausting.

But God can help you through all of it.

“Give all your worries and cares to God, because He cares for you.”

1 Peter 5:7 (NLT)

Your faith will become unshakeable as you watch God come through time and again. Not always in the way you ask for or hope for. You’ll beg God to heal Mom miraculously. You’ll be so convinced that He will that when your mom takes her final breath, you’ll sit there for several minutes, waiting for her to breathe again. But she won’t. And it will take you a few days to realize that God did answer your prayer, just not in the way you expected. He answered because Mom is completely healed—not just her body, but her heart and mind. She is at peace.

And you’ll feel God’s arms around you when you cry and rest in the promise that you’ll see her again. You will know that for sure. You will see her again, because you both accepted the promise in Romans 10:9-10.

That’s when it will become you and Dad. You’ll still be a caregiver.

You’ll want to give up. Daily, weekly, monthly, yearly, but God… He’ll pick you up when you don’t have the strength to stand on your own. And you’ll keep going.

You’ll keep loving and caring, and you’ll thank God because now Dad lives with you.

With love,

Your older self

Three Rapid Questions

1. In a couple of sentences, describe one thing you do to move through fear or uncertainty during caregiving. Prayer is my go-to whenever I’m afraid or uncertain about anything. I also find myself saying “okay” under my breath a lot. I think it’s God’s way of prompting me with a reminder that I’m okay, no matter how chaotic and out-of-control life feels.

2. Thinking of someone you admire or respect, name three of their standout qualities. I’ve been blessed with many people in my life who I admire and respect. Three qualities that stand out are their unshakeable faith, their selflessness, and their resilience.

3. What’s one quote, movie, or book that’s inspired you? My favorite quote is “He is no fool who gives what he cannot keep to gain what he cannot lose,” by Jim Elliot. I don’t want to miss what truly matters or waste my time and energy chasing something momentary or futile because my focus was misaligned.

Prompt for discussion:

What is one word or phrase that helps you in your role as a caregiver?

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

Subscribe now

Merriam-Webster, s.v. “pivot; flexible; improvise” accessed March 25, 2026,

"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!

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 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

"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.