The Winter Season of 'Letters from a Caregiver.'
Life's Tapestry: the nuances, choices, and caregiving despite the fear.
Hello, Dear Readers, I hope you’re well. A warm welcome to new Carer Mentor subscribers. You can read about me here: Who Started Carer Mentor and Why?
Last week’s Autumn Season finale offered reflections on Connecting With Empathy and Compassion, presented a tabled comparison of sympathy, empathy and compassion and highlighted a thought-provoking article, ‘Can Empathy Be Learned?’ by Cathy Joseph.
The ‘Letters from a Caregiver’ Collaboration series continues with this Winter 2025/26 Season.
For many, November to February can be especially discombobulating. There’s the holiday season of family gatherings, where relationships can be fraught and absences felt more acutely. Caregivers can feel pulled in many directions; stuck between the wishes of many, and defending the needs of the person we care for.
This season, where emotions can swirl and fear stemming from uncertainty can rise, it can all feel too much. This season can be particularly hard to navigate for those of us who anticipate ripples of grief.
I see you. Heartfelt resonance and warm wishes.
I’ve started reminding myself of the small rituals of self-compassion that give me comfort. What are yours? You’re not alone.
‘Treading gently across fresh snow’ by Victoria
As darkness closes in months of cold, snow and wind still, hard to stay inside, with friends and kin gone the bright evenings walking easily outside. Worried, about friends and the season ahead On the cusp, for some, it's excitement, But, for us, some feelings of dread. These are the times when love’s light faltered Traumatic moments stuttered, the nights jolted, rollercoaster-ed Fear and fright. Folds of time and grief re-exposed A dusting of new events lay. A friend, another gone, and now fresh snow. Across the dark season here again, treading gently towards another year. End.
Our caregivers’ experiences are unique, yet we’re all connected.
After a decade of caregiving with increasing responsibilities (oof!), I’m deeply curious about the differences and the diversity of our caregiving experiences.
I have a great appreciation for the authors who’ve accepted the invitation to write a letter to their younger selves.
Where does the Venn diagram of our experiences intersect, and where’s the space unique to us?
Perhaps there’s a cultural overlay, or a lifequake(s)1, that orients an experience on an entirely different calibration of reference points compared to my own?
No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!
Writing to our younger selves can help us connect with empathy and compassion without having to explain our reference points or viewing lens.
As readers, we can curiously shift our kaleidoscope to witness the colours and patterns of someone else’s experience. We can also hold space for their feelings.
When we pause to consider the lines that turn to curves, the colours that have changed their tone, perhaps we can also appreciate the nuances of our own caregiving journey and how we’ve navigated the millions of small choices and decisions that make our experience uniquely ours. Our life’s fingerprint.
Our choices, our agency
With every caregiving experience, we can be juggling, balancing, and making choices about safety, risks and benefits; needs versus wishes; stress vs calm.
I hope we include ourselves within those equations. What’s safe for us to do alone, or when do we call someone for help?
When do we call for an ambulance if symptoms are not improving? At what point do we redefine the situation as ‘life-threatening’?
The frequency and intensity of these decisions can depend on the stability of our loved one’s health condition and symptoms.
Whether we’re breathing with uncertainty every day or managing to sustain a plateau of calm, we’re in a tapestry of care. Fear and anxiety are woven into this uncertainty. Whether this is hands-on or overseeing at a distance, it’s all caregiving.
A tapestry tested
For caregivers, people telling us what to do can feel like someone trying to poke holes in the tapestry of choices we’ve carefully woven, to the best of our ability, under stress and strain.
The warp and weft are tenuous, and yet we still manage to weave the threads of difficult choices together. Between the tension points, we curate memories and mindful moments. We try to hold it altogether.
Well-intentioned, unsolicited advice, from the inexperienced or uninitiated, but especially from care-splainers, can feel like grenades lobbed randomly for spectacle or to test our rebound response, in a game we didn’t want to play.
Our choices are carefully weighed.
I’d like to share a short note from Sammie Marsalli [shared with permission from Sammie]
While caring for my wife with Alzheimer’s, I was offered assisted home care by my family because they probably saw the stress, I was going through. There are also programs offered by our insurance and social services. Unlike many home caregivers working, being retired, I was able to gracefully reject their concern and offer, telling them not to worry, “I was ok,” even though I was physically and emotionally exhausted. It had nothing to do with finances. This was never an issue. One critical factor was that she is not bedridden.
I am aware of many successful assisted home care services that truly help home caregivers.
My problem was “emotional, not rational.” I simply couldn’t let go of her after 44 years of marriage. I just didn’t want any third-party person “to touch” my wife. Furthermore, I had no trust in third-party services because I had heard of many problems with these services from other caregivers. I felt that I was the only one who could defend her from any danger because of my one exclusive advantage, “my love for my wife,” something they could never have.
I am convinced that during all of these years of our marriage, filled with a lifetime of knowledge about her health, likes and dislikes, habits, hobbies, traditions, and idiosyncrasies, is key in assuring her daily well-being. This enables me to tap into her history, cater to her needs, make her feel happy about herself, and stimulate constant interaction with her family.
I am certain that I can uncover details that might be unforeseen to a stranger, regardless of how specialized would miss, that could endanger her fragile health.
Most importantly. I was paranoid that my wife would feel an intrusion into her dignity and private space from someone unknown to her. I couldn’t bear that.
My family accepted my decision and has supported me every step of the way.
“I will always be her protector and defender, and I will never let go of her, no matter what.”
At the end of our day, “Goodnight honey, you were incredibly great today.” “You were amazing!”
I get that smile I am constantly looking for, and we embrace each other with a hug and kiss.
My response to Sammie:
Your love shines, Sammie. AND your eyes-wide-open Choice of caring for Ximena is a truth no one can deny or take away from you.
Well-intentioned advice or expectations from others don’t have to dictate our actions. I LOVE how you describe providing context for Ximena and can offer her the scaffolding she needs to have quality moments every day.
Like you, I’ve read and heard horrible experiences of care homes, some where convenience overrides patient wishes, where patients are, e.g. over-medicated, or left in beds.
People tend to forget that we, as caregivers, have rights and choices. We can choose to care, or not. Each person deserves the freedom to choose either way.
There needs to be good quality, accessible support and care available to support the people we care for and our choices.
Thank you for sharing your journey and thoughts with us.
Caregivers and their loved ones make the best choices they can with the best information they have and the resources they are aware of and have in hand, at that time.
Can things be better, more…comfortable, special, enlivened? Perhaps, but listening to that uncertainty can drive us mad. Love already sets impossible standards for us to achieve.
Eyes wide open, we also know better than many how things can swiftly change. We weigh up the equations, we do daily checks, and balance the risks minute to minute. But for the here and right now, we’re the guardians of stability and our loved ones’ wishes and needs in this specific moment.
We’ve travelled through the choices to calibrate our combination—a code of actions that sustains stability and safety.
Our unique, fragile bubble may look monotone and delicate from the outside, but we curate our technicolour mindful moments within its boundaries.
We’re living in the liminal space, weaving between the amplitudes of life.
“Please handle with care.”
Often, caregivers are the threshold, the buffer, and the protector when the threads of the tapestry are in flux or tightening. We know the only constant in life is change.
Still, we have to move forward despite the fear. Caregiving, like life in general, does not stand still.
Our letters share some of our choices and tapestry through our frame of reference.
As we enter this second season of ‘Letters from a Caregiver’, I’m looking forward to discovering more diverse caregiving experiences, tracing each fingerprint with empathy and compassion, and endeavouring to handle each with the care and respect it deserves.
This season can be fraught, but I hope this new flurry of letters brings some heartfelt empathy, companionship and light on the path you walk ahead.
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Bruce Feiler at TEDxIEMadrid June 2022 ‘The Secret to Mastering Life’s Biggest Transitions’
Thank you for allowing me share my younger self and be a part of the “letters from a caregiver” Caregiving is a hard journey. It’s unnatural in a way to have to care for someone you love. These stories show how it can be done. They show the love, the endurance, the loyalty, the care. We will keep going, like we always do for those we will always love. Xoxo💛
My heart goes out to the caregivers of the world. They give and give and give, and I have known more than a few who have nothing left to take care of themselves, as well. I am quite sure the community you created, Victoria, is a source of strength and comfort to so many. I look forward to reading your winter series and "meeting" the next group of incredible people.
(And thank you for the kind mention...!)