'How's our Community Network going?'
Defining success, the Carer Mentor way. A mid-year review
Dear Readers and Community Network, I appreciate you! This article is slightly different. It’s a mid-year review of results versus intent. Is the Carer Mentor Community Networking?
‘This is not about me; it’s about you—That’s why I’m here.’ Victoria
Why did I choose to build something for Caregivers?
A reminder: Who Started Carer Mentor and Why?
Statements of intent, with links to articles.
To appreciate the diversity and unique nature of every caregiving experience. No single ‘standard’ caregiving experience exists because every human is different. The dynamics of caring are specific to that person's needs and are affected by the relationship dynamics, which are unique to that context.
To highlight that there is more to caregiving than acts of caring. For example, there is a Caregiver’s Telepathy and Burden.
To recognise the needs of caregivers—their safety, health, and well-being—when the needs of our loved one(s) take centre stage. In particular, how to navigate our emotional well-being and sustaining ourselves.
the natural struggle and conflicts we have with our emotions. Societal myths and beliefs about emotions don’t help.
the need to better understand emotions and reclaim some agency from feeling discombobulated or out of control.
the spin-cycle of emotions, being torn and the need for self-compassion to manage the mental load.
To appreciate every caregiver beyond the single facet of caring for someone. While a caregiver’s time and energy can be consumed almost entirely by caring, it doesn’t equate to, nor express, their identity or full potential.
To be a portal to the work of other writers, experts and organisations who can offer support on specific topics like Dementia, Bereavement and Grief while sharing my reflections and insights, e.g. The WandaVision of Grief
To raise awareness and curiosity about caregiving, to dispel the myth that caregivers are superhuman and underscore the caregiving crisis, especially in this election year.
Why a website, not a book, YouTube channel, podcast, or video blog?
I wanted to create a dynamic caregiver hub where people can share experiences and resources and cross-pollinate ideas—not just me but us—a network and community.
A Nexus point is a portal and hub, not a central point that could bottle-neck answers. It can’t be a single destination or one-stop reference—it’s impossible to house everything a caregiver needs in one place.
Carer Mentor could be a connector, part of a circuit in a broader network of nexus points. Caregiving is a species activity that touches everyone— one facet of everyone’s life story. So, every writer’s publication could be a potential connection.
Readdressing the value of care as a dynamic community can shift the narrative of this hidden care crisis from an individual burden behind closed doors to an open collective social issue.
Why do caregivers need something ‘dynamic’?
Because the unpredictable nature of caregiving demands agility daily.
In calm, we have our bearings and can be the compass for our loved ones. However, caregivers frequently pivot hard when symptoms, circumstances and crises happen.
Because family members and informal caregivers are not formally trained as caregivers. We may be experiencing caring for a loved one for the first time and lack the context of previous experiences to orient ourselves.
Caregivers need accessible references, resources and tools to solve immediate issues or prime themselves for future/potential scenarios.
We may seek ‘self-help’ resources to navigate the emotional burdens of caregiving and other transitions/changes.
Because there is a tsunami of information, we must teach ourselves about systems and how to navigate the maze to find the odd breadcrumb that fits our situation and helps us move forward.
Caregivers can support each other in navigating the maze of different systems - not trying to explain or decipher these systems but cross-pollinating examples and information to support each other’s journey.
We need something to foster connection when unpredictability and discombobulation in 24/7 care routines often isolate and disconnect us.
We need something that fits our schedule, e.g., in ‘me-time’ windows at 2 a.m.!
A living nexus of information also makes it easier to revise published data or contact details of organisations and raise awareness of active campaigns.
Curating a ‘living nexus’ is about connecting and collaborating, about creating a network of diverse voices that excludes no one.
It’s also an opportunity to recognise and celebrate each other when we can’t/don’t feel accomplished or appreciated—when we feel more guilty than valued, when we feel devalued by society and ‘caresplained-to’ by everyone.
As a nexus point in a community network, a website can meet caregivers where they are, not preach or tell, not push or lecture. It can be exhausting trying to explain our choices and decisions on top of doing the actual caregiving.
A caregiver’s needs are overshadowed by those of their loved ones. We are the ‘champion-speaker-defender-interface’ and buffer of emotions. We may be indispensable, but we also need respite—a virtual respite point where we can relate to others.
These are just some of the key reasons behind choosing a website for Carer Mentor.
I wasn’t sure the dynamics and network would work, and then the wonders of the Substack Platform and Community took off.
Three key measures of success: The highest priority is ‘likes’ and comment feedback per article—the resonance of the empathy expressed.
The next would be discussions between readers in comments and meaningful exchanges in other publications.
The third is that others are inspired by the content and comment/write about it.
The Results so far
and I connected in 2023 and we often have great comment exchanges. Louisa generously shared my article and her comments on this article. (March 27, 2024) Diverse Voices around Substack and My Comments Roundup #4. Essays on connecting with parents through dance, music and language — a selection of highly evocative newsletters worthy of your attentionSharing empathy and support with other caregivers is heart-core. A few examples of mutual support and appreciation. ❤️
, thank you for your shoutout, recognising the caregiving advice I offer everyone. (May 31, 2024) I Came Here To Leave You. When you can't recognize the things you owned, what's left? thanks for your appreciation of the term I made-up ‘Caresplaining’ that you referenced in this article. (May 9, 2024) Growing Present 🌱 Week 2 - Pressing Pause. thanks for tagging me in this note. “Who else has had the painful experience of explaining death to children, in the midst of your own grief? (May 1, 2024). You inspired me to incorporate this into an article ‘Are you fluent in caregiver’.Sharing sources, ideas, comments and collaborating
- was inspired to undertake the 365grateful.com project after I directly messaged her with the link. I love sharing potential ideas and suggestions and seeing if they resonate. Her article (April 7, 2024) ‘Joy and Delight. Refocusing intention.‘This is the Carer Mentor article collaboration with Susan: 'How can I feel happier or more grateful?’ Enemies of gratitude and how to cultivate a habit to feel happier and more grateful. (May 8 2024)
Of course, one of my favourite articles has been the collaboration with ten other writers for the article ‘Music memory is more powerful than words’ (February 28, 2024)
…And then there have been those comments that have blown me away. This is the measure of success— heartfelt impact and feedback, not numbers.
Comment on ‘Architect of my emotions?’ (June 2, 2024)The comments of ‘Grief is messy. It’s not a tidy 5-stage path’ (March 13 2024), especially by
, , andTo all my psychologist, therapist friends thanks for your support:
, , ,And…the mutual appreciation society!
, , , , , , , , , , , , , , , , , , , , , , , , , , , , ,And then these …..
I’m humbled when other writers spontaneously leverage Carer Mentor articles.
. Thanks for highlighting my work in your article, I’m inspired that you’re inspired! (May 24, 2024) How I Could Have Avoided Being Miserable at Work. Emotional Agility and how I could have cultivated it Thanks for highlighting my article. I appreciate you. I appreciate feeling supported and connected. (May 21, 2024) How to Pick Your Thoughts to Pick Your Feelings. #SciencePlease feel free to use any of the Carer Mentor content in your writing, with a small attribution to the website, its mission and support of caregivers. Sharing is caring ;-)
Connecting with other communities, potential new nexus points?
- thanks for the shout-out highlighting our notes exchanges (May 31, 2024) Elevating AAPI voices. This is a compilation of essays & a directory of writers.
- and I had several note exchanges here “Dear FICTION READERS & WRITERS, is there a library of Asian Substack authors? (May 12, 2024). I’m looking forward to learning more about her idea
Qstack | The LGBTQ+ Directory of Substacks Bravo on the launch and fab site
and team!June 4-5th Open Call collaboration is up and running: LGBTQ+ Caregiving
I’m looking forward to the launch of SmallStack —cheering on the Team of Robins
and
So, the mid-year verdict… Thank you! You are making Carer Mentor a dynamic community and a nexus point for others.
I have an overflowing Notion database of resources and topics, and BIG topics are coming. So you know where to come if you’re looking for inspiration! Free subscribers can Direct Message (DM) me.
If you are a writer with a publication on Substack and have a caregiving story or article, please share the URL and brief description.
I always reply to comments and messages—it may not be instantly, though!
My only caveat is that please don’t forget I’m a caregiver, too. [I’m writing this while watching over Mum sleeping.] I can’t do podcasts, audio, or video, but I can respond in writing. Time is my most precious asset and expense I chose my purpose and mission.
Carer Mentor will remain free to read. So I must say a BIG BIG THANK YOU to my paid subscribers: Louise, Danielle, Mervyn,
, , , , .There is a monthly subscription option of £6/month and an annual subscription of £50.
If you can help my brain cells dance, I’d appreciate a little coffee ;-) ‘buy me a coffee’?
❤️ Thank you. ❤️
P.S. The last article I’m writing in the series about Prof Lisa Feldman Barrett’s work will arrive in your inboxes on Sunday, 9th June.
Question:
Have you discovered new insights or ideas from the Carer Mentor Articles or via Notes? Can you Tag someone I introduced you to?
Please ‘❤️’ LIKE the article.
Victoria! First, thank you for mentioning me. But most importantly, I am so happy to know that you are pleased with the feedback and results you are getting from this community. I don't want you to ever stop sharing information and supporting us all. I hope you keep on doing it forever! 🥰🥰 Some of your articles I read as soon as possible, and some I set aside for a time when I may need the information more than I do now, but every single one is priceless. You should know that one of my biggest worries in life is the possibility of having to take on full-time care of a parent or my husband at some point in the future (beyond what I currently do to help them), not because I'm not willing to, but because I want to be the best carer I can. Knowing that you are there with resources and for mental and emotional support allows me to sleep at night. Your mom is so fortunate to have you, and knowing that she is your number one priority - I am amazed at the time and energy you still devote to Carer Mentor. My heartfelt thank you! It is a true blessing to be part of your community!
Love this and so glad to be on this platform with you Victoria, keep it up!