Carer Mentor: Empathy & Inspiration: Letters from a Caregiver

"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!

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-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

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.

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

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

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

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

Previous letters, this season:

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

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

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

She says,

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

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

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

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

Dear Tessa,

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

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

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

I remember you clearly.

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

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

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

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

You had spent years doing the impossible.

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

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

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

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

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

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

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

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

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

It felt like you were letting them down.

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

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

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

You worried about judgment.

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

But the harshest judgment didn’t come from them.

It came from you.

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

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

It makes them human.

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

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

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

Placing Mom and Dad in care was not abandonment.

It was an acknowledgement.

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

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

You made it because you cared deeply and were human.

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

But slowly, something else emerged.

Perspective.

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

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

You could be present without being consumed.

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

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

You were not a bad daughter.

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

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

But not as punishment.

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

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

I would like to thank you.

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

Some decisions don’t ask to be justified.

They ask to be forgiven.

And this one finally has been.

Author’s Note

Caregiving is a deeply complicated experience.

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

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

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

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

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

The Closing Rapid Fire Questions from Victoria:

1. Courage to me is…

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

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

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

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

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

Tessa’s prompt for discussion:

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

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

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

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

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

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

Previous letters, this season:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When the Waves Keep Coming: Trust yourself

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

Dear Anna,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With so much love and compassion,

Anna

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

Link to articles by Anna:

Why So Many Women are Opting out of Motherhood

Entangled and Estranged

The Closing Rapid Fire Questions from Victoria:

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

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

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

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

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

A prompt for comment discussion:

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

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

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

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

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

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

Previous letters, this season:

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

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

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

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

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

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

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

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

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

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

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

The gift of self-compassion for the caregiver

Dear sweet Amy,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Remember the last words she said to you?

“I love you.”

That is all you need to know.

Love,

Amy

Link to articles by Amy:

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

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

The Closing Rapid Fire Questions from Victoria:

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

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

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

A prompt for comment discussion:

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

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

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

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

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

Previous letters, this season:

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

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

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

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

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

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

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

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

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

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

It’s moving toward what matters.

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

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

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

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

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

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

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

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

It’s Not Her, It’s The Disease

Dear Kerri,

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

That was the day Mom became a stranger.

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

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

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

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

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

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

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

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

But it’s not her, it’s the disease.

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

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

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

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

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

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

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

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

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

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

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

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

My therapist shared some wisdom from another client:

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

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

With love,

Kerri

The Closing Rapid Fire Questions from Victoria:

‘Courage to me is... ’

Being scared and doing what’s right anyway.

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

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

A prompt for readers’ discussion

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

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

'The Light We Carry' By Victoria

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

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

Previous letters, this season:

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

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

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

Dear Friends,

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

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

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

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

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

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

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

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

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

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

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

The Light We Carry

Dear Victoria of the late 70s

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

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

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

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

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

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

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

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

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

‘Whistle Down The Wind.’ Ahh yeah.

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

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

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

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

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

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

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

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

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

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

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

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

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

“Don’t you like it?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A prompt for readers’ discussion

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

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now

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

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

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

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

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

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

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

Previous letters, this season:

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

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

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

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

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

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

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

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

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

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

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

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

Dear 2017 Cindy,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2025 Cindy

The Closing Rapid Fire Questions from Victoria:

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

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

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

A prompt for readers’ discussion

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

Please ‘❤️’ LIKE the article & consider subscribing!

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

Subscribe now

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

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

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

Previous letters, this season:

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

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

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

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

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

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

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

Thank you, Sarah.

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

“Grasshopper, you are the expert”

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

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

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

Never forget that you are the expert on your child.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You are the expert on your child.

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

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

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

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

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

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

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

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

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

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

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

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

Or because you don’t know his genetic background.

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

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

Observe, pray, listen and trust yourself.

You are the expert on your child.

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

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

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

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

You are the expert on your child.

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

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

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

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

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

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

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

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

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

With love,

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

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

The Closing Rapid Fire Questions from Victoria:

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

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

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

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

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

A prompt for readers’ discussion

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

Please ‘❤️’ LIKE the article & consider subscribing!

Subscribe now