'Walking my why'
Advocating for others.
Hello, Dear Reader! Thank you for spending some of your precious time with me.
Welcome, to our new Carer Mentor community members!
I’m Victoria. I cared for my dad until his passing (the hellish dark days with grains of joy), and now I look after Mum (calmer waters with giggles). You can read more about why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
Being true to myself, Walking my Why
Over the last few days, several things have piqued my emotions. So, instead of spending another hour struggling to articulate and weave the list of my original ideas for today’s article, I want to use my time and voice to advocate for others.
On Thursday, August 1, I published an article highlighting
’s essay ‘Waiting for a Serenade,’ which he wrote as part of the Carer Mentor with QStack Collaboration. Ollie draws us into his world, caring for his mother, who has dementia.There is humour and some melancholy - or perhaps that’s just my interpretation. If you’re single as a caregiver, starting or sustaining a relationship is difficult (perhaps near impossible) if you’re a caregiver. I’ve also witnessed the breakdown of a couple of marriages. So, being faced with that potential ‘non-relationship’ reality felt ugh. Also, it doesn’t help when you suddenly see an old love interest in your photo memories. Double ugh, thanks, Apple Photos!
Ollie neatly captures the realities of caring for someone with dementia, the everyday switcheroos, and trying to take time for yourself, in the way that he’s written the article. I think every caregiver will relate to the numerous pivots and have heartfelt resonance.
‘Waiting for a serenade’? Sadly, I’m not expecting Boombox serenades underneath my window (Cue GenX reference).
On Saturday, August 3rd, Kelly, at The Disabled Ginger published this article My Most Dangerous ER Experience and How My Advocate Saved My Life A story of medical gaslighting, negligence and neglect that very nearly caused my untimely death - and how my accidental advocate (untrained and unprepared) saved my life
Kelly’s written a series about the experience of going to the hospital when you’re disabled and/or chronically ill and the importance of having a strong advocate. This is the fifth in the series and the most heart-achingly painful. It’s a tough but essential read for anyone. I highly recommend reading it. Here’s part of the introduction to her essay:
This is an issue that’s near and dear to my heart because I almost lost my life to medical negligence in my early twenties - and it was an unexpected advocate who saved me. If I had been alone I have no doubt I wouldn’t be here today. I feel the need to add a content warning to this post - for medical errors, gaslighting and fertility and gynaecological issues.
No matter how independent, savvy, informed, or strong you think you are, you need an advocate who you know to go with you to the hospital. Someone you can trust, prime with your medical information and be ready to stand up for you.
If you’re thinking it could never happen to you - think again.
The woman was found in a chair underneath her coat on 19 January [2024] at Queen's Medical Centre in Nottingham.
It is understood the 39-year-old, who was triaged on arrival complaining of a headache, waited for more than seven hours to be seen by a doctor.
She died of a brain haemorrhage two days later.
Having been in A&E in the middle of the night with Dad over and over, I could share a playlist of adrenalin-fuelled moments. It wouldn’t only be about us and what I witnessed; it could also include the experiences of other caregivers, but I’ll save those for another article.
I can’t and don’t want to waste my energy raging at the system in a ‘them and us’ way. My time is too precious for that.
It’s important that I note here that I’m counting my blessings for the excellent oncologists, specialist liaison nurses, and support we have now, and for the cardiologist who cared for Dad. When you find the gems, appreciate them! We are blessed, and I’ve learnt a lot of lessons that help us.
The fire in my belly IS raging, but
for the need to spread more empathy,
to empower and arm each of us with information,
to network ideas, inspiration, and support.
Our Carer Mentor community and network can be a network of light, beacons of communication to spread the word and enlighten others.
Please start to identify your ‘hospital advocate’.
I’m that person for my Mum, but who will be my advocate?
wrote two excellent articles on this:Who can you call from the hospital at midnight? Finding the elusive emergency contact (May 7)
You're not as alone as you think you are. Post about emergency contacts yields results. (May 10)
When push comes to shove, you may be surprised at who volunteers or agrees to your request to be with you at the hospital. However, the most challenging piece is whether they can advocate for your needs and wishes.
In addition to ensuring that all the essential documents and wishes of your loved one are administered and made official, we need to ensure that we do these for ourselves too, and invest the time in ensuring that our advocate is clear about the details. It may feel tedious, but that’s because it’s uncomfortable and awkward.
Uncomfortable and awkward are the byword feelings for things society has conditioned us not to discuss. Be aware.
If you feel discomfort or see it in others, dial into your empathy and be mindfully present for the other person.
Please don’t dismiss their need to voice their wishes. It may take them a lot of courage to voice their vulnerabilities and talk about difficult topics like illness or death. Empathy is sitting together with someone in their pain/discomfort. It’s not about avoiding pain for our comfort.
Here are some key links and tips to help: Carers UK: 'Planning ahead, helping a loved one' Animation 'Managing someone else's affairs'
These thoughts are top of mind for me because we have a few close friends who were recently diagnosed with cancer, and yesterday, I heard that one has metastases.
I count our blessings, say prayers, find gratitude in the smallest of things, and listen to a lot of music to help regulate my emotions.
I have played this nearly every day over the last week. Twice in one sitting, with my headphones on to hear the deep bass tones—the thunder and storm
Track 006 | Riverless | Solemn Slade. A dark and gritty track that builds to a fierce and thunderous climax. Thanks to the brilliant music of
Tuesday August 6, I just read
newly published articleIf you don’t know Bess’ work, here is an excerpt from her About page
I'm Bess Stillman: an emergency medicine doc, writer, and wife to Jake Seliger, who is currently dying of squamous cell carcinoma of the tongue. Here you'll find writing about life, cancer, death, love, health, and healthcare (“health” and “healthcare” being distinct). If you’re enjoying what you read please like, comment, and subscribe so we can build a community together. If there’s a topic you’d like to hear about, let me know.
Here is her heartbreaking essay:
Please, consider contributing to their Go Fund Me that was supporting Jake’s cancer care, and which is now supporting their daughter Athena.
Today, I knew I needed to witness these experiences, share them with you, and advocate for us to hold fast to each other in community and support, not only here in Carer Mentor but also locally around our homes.
Some neighbours and friends need support.
Once upon a time, when I started caregiving. I thought I was just a tool, the hands and arms to do things. Like many caregivers, I chase communications, inform, advocate, champion, solve things, speak weird medical lingo and make things ok.
Caregivers are not the Swiss Army Knife for their loved ones. We MacGyver the crap out of caregiving, (sometimes literally)—wisecracks and all! (again with the GenX refs!)
Cue Music and Richard Dean Anderson with a paperclip…Never underestimate the skills of a caregiver!
As summer draws to a close….
Call someone and ask if you can go over to drink a coffee and check in on someone. Drop off flowers and see if an elderly neighbour drinks enough water in the heat. Let’s be creative and empathetic ;-)
There are many events, politics, and life going on out there in the big world. Still, in the ‘avoiding COVID’ / ‘immunocompromised’/' caregivers way of life, there are more immediate everyday demands and issues. If you can, please check on someone you know.
I’m sending a big hug of empathy to anyone who needs it, but especially to the caregivers, and those suffering cancer, illness, chronic condition or disability. I see you.
Here is a song that captured my attention. Some uplifting gospel.
‘You’re Never Alone’
Another Victoria ;-) Tori Kelly You may recognise her voice more from this:
‘Don’t you worry ‘bout a thing…cause I’ll be standing, I’ll be standing by you’
Thank you for being part of this beautiful community. I appreciate you.
Please ‘❤️’ LIKE the article & consider subscribing! This helps us highlight these free resources for those who need them.
P.S. Consider this the lighting of one beacon. After this collaboration via QStack with Ollie, you’ll be seeing several more in the coming months. Watch this space.
This is a beautiful post, Victoria. I appreciate the mention of other carer's - some I'm familiar with and some I haven't been but will read the posts you've recommended. You are one of the finest advocates for others and I sincerely appreciate it!
Your mentions of empathy, Ollie's article and Kelly's (both of which I loved, thanks for sharing them), it all echos in my head. A few days ago I was interviewed for a podcast and asked if I saw things getting better in the future for those with Alzheimer's and their caregivers. I said no, unfortunately, I didn't. Just as their won't be any notable prison reform as long as prison is big business (even before it was privatized - there are courts and court officers, bail bondsmen, attorneys, police, parole officers, the foster care system and so on - it's a beast that demands feeding), so it is with the medical community. It's an industry based on keeping folks ill or dependent on doctors, medicine, treatment. There is no financial profit in growing a healthy population, at least not to the pharmaceutical industry, the hospital industry and so on.
What we are lacking, and you hit the nail on the head with the word empathy, is compassion. We don't invest in or applaud spiritual, moral or ethical development. It's not religion, but compassion. For strangers. For the earth. For all sentient beings. For people who cannot help us at all. For people who are mean or bitter or lost. If we spent even a small percentage of effort on teaching our children that all living things have value, deserve attention, patience, and assistance , a small percentage of the time we put into pushing them to be successful (defined as having the most toys, having more than the next person), to be the "best," to "win" (which automatically creates a loser or an entire loser class).... Well, now I'm just babbling. But you see where I'm going.