'When the going gets tough, you're not alone.'
Leaning on others for support. Leveraging the wisdom of those 'in-the-know.'
Dear Reader, I hope you’re okay and that life is treating you and your loved ones well.
If you’re new to Carer Mentor, ‘Hi and Welcome!’ I’m Victoria. You can read more about me and the Carer Mentor mission here: Who Started Carer Mentor and Why?’
I’m sharing some extra empathy and hugs as I know several of you/your loved ones have been suffering this week. A couple of you have been in the hospital.
I have a good friend who had major surgery, and now, on discharge, she has COVID. Not a great week. Please remember that some of us have to mask up and remain vigilant for the sake of our immunocompromised loved ones.
I’m not going to give you some over-positive clichés— sometimes life just Sucks with a BIG fat capital S. You can find community, empathy and support here and via the community Q&A.
When things are tough, sometimes we need help navigating our way forward. Here’s a useful article by Adam Grant1 ‘Beyond Toxic Positivity’ and a reminder of the articles I shared about Dr Susan David’s ‘Emotional Agility’—a book that’s stayed on my Top 10 Book List since I read it in 2017.
Here’s a helpful video if you’re feeling burnt out, exhausted, and in a dark tunnel trying to race forward to ‘get to the light’ at its end.
Every caregiver or anyone suffering a chronic illness can often feel like there is no light, only a dark tunnel.
You’re not alone. We can help each other in the darkness, help each other see in the dark, and who knows, maybe together, we can see glimmers of light and find a little hope right there where we are pausing to catch our breath.
This video, like others, is why I follow Susan David’s work—articulate and insightful.
Edited Transcript
I was in a fireside chat recently, and the person interviewing me asked me about the increased burnout and decreased well-being that so many people have experienced.
She asked me how we get to the light at the end of the tunnel? How do we get to This Light where we feel well and happy? I thought about this a bit and wanted to share this reflection with you.
We don't need to race for the light when we are in the tunnel. Part of being in this tunnel of exhaustion or depletion is also recognising that it has sides.
We can lean against the side of the tunnel and take a breath, sit on the floor, and cry. We can name our emotions in the tunnel, the disappointment or the loneliness. We can ask ourselves what value and what need is being signalled by that emotional experience.
We can reach out for other people's hands in the tunnel. We can hold those hands metaphorically, knowing that we are not alone. We can come to realise that so much of well-being is not about grasping for the light.
So much of well-being is about learning how to see in the dark
Around Carer Mentor
October 2024 iCARE Stack offers an easy way to access articles
[The Carer Mentor Website evolution continues with ‘The Caregivers’ Library.’ Carer Mentor articles and other author articles are curated into four ‘Tables of Contents’ pages. You can access this from the desktop homepage of Carer Mentor or by bookmarking the Library link. Explore all the different articles by subject.
These are the 4 ‘Tables of Contents’ pages:
The Resonance, Resources curated for caregivers
The Cape Dispelling the myth that caregivers are superhuman
The Carer Mentor Journey Victoria’s journey
Mentoring: A Portal to Experts through a Caregiver’s Lens Research-based insights to inform your way forward.]
This week’s article sharing ‘One Resource, Two Insights and Three Ideas/Tips’ is live. This rolling list is for quick-access inspiration. Download Janine’s Caregiver Organiser!
After sharing my thoughts on ‘caresplaining’ twice this week, I felt compelled to write a few words in the ‘123’ and open up the discussion in the Q&A this week.
Feel free to add any thoughts on Caresplaining, Hero-ing or ask any question in the discussion thread this week. It’s a community thread for any caregiver, for all of us to share thoughts and exchange ideas.
You’re not alone.
For any UK Unpaid carer - this was launched during Carers Week
Click on the image to go to the website
Ask the trained/certified experts: AccessAva or The Carers UK Helpline. Don’t try to decipher the labyrinth yourself.
A big hot-button: hospital discharge in the UK
Over the next week(s), I’ll share facts, references, information, and many thoughts on this.
Most importantly, I’d encourage readers in the UK to be primed for an emergency or an elective (planned) hospital admission and discharge.
If you’re asking ‘why?’ you’ve already answered my question. Are you aware of hospital discharge procedures? More specifically, are you aware of the Discharge Pathways?
Irrespective of age, health status or medical condition, familiarising yourself with your local hospital services is worth your while.
A few basic questions to ponder ahead of the next Carer Mentor articles:
What hospitals are near you/your loved ones? What is their Care Quality Commission rating?
Is there a ‘Centre of Excellence hospital nearby? Where is the nearest specialist cancer centre?
Does your general practice (GP) have an out-of-hours emergency number? Is there a specific one for vulnerable patients?
Where is your local pharmacy? Do you have a delivery service?
I’m deviating from my planned content to write these articles because I shared key discharge information at least four times over the last few months.
I want to arm you with information so that you know your rights, especially when you’re advocating for the care of your loved ones in the hospital setting.
While the pathway/information is UK-specific, the questions are global.
As always, I hope my experience and personal reflections can help you in the future.
If you or a loved one has recently experienced a hospital discharge (in any country), I invite you to share your thoughts below or write an article I can link to. Was it a good or bad experience? Were you supported? What happened on the day of discharge? Details and experience can help others.
Synchronicity of Substack.
The Disabled Ginger published this yesterday:
‘"I Won't Go to the ER Unless I'm Literally Dying" When you're disabled or chronically ill - learning when to seek medical care (and what that care will look like) is a painful and traumatic journey. It often ends in "I will never go to the ER again."
Digesting these insights may be uncomfortable. Our countries' healthcare systems have changed in community and hospital settings.
All healthcare professionals I encounter are struggling. Every caregiver I’ve met has a ‘hospital story.’ I’ll share some examples in the next article.
Until then, I recommend doing some investigating of your own.
What happens when friends in your community have had to call emergency services to go to the hospital or have been admitted to your local hospital for planned surgery? What happened on the day of discharge?
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Organizational psychologist at Wharton, #1 NYT bestselling author of THINK AGAIN, host of the TED podcasts Re:Thinking and WorkLife. Adam Grant’s Substack