This Caregiver's 'Lens of Hope'

No toxic positivity. It's a hope built on real life, not wishful thinking.

Hello, all you lovely Carer Mentor readers and friends! Thank you for spending some of your precious time and energy here.

I’m Victoria (She/her/hers). You can read more about why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?’¹

The context for this article

This article is part of the ‘ComfortZone’ section inspired by a busy, difficult October and November (read Creating a 'ComfortZone' and rekindling inspiration and hope.)

Three articles are already available to help you navigate through December.²

• This Caregiver's Podcast Recommendations. To curiously explore, reframe, inspire and rekindle hope

• This Caregiver's Watchlist. 'Feel the feels', escape reality or be transported by music.

• Inspiration 'Ten Annual Review Questions.'

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The premise for the poem

Caregivers experience the full seismic amplitude of emotions in very short periods of time. The experience of time is felt very differently when you’re caring for someone. Time warps, and ‘just a step to the left’ …we do the TIME-warp, again and again.

In 2019, when my Dad’s health decline accelerated, darkness became more dense. Sparks of joy were infrequent, but I thirstily absorbed their impact amidst those dark times of pain, grief, and sadness. Being open to suffering is counterintuitive, but if I hadn’t felt the messiness of suffering, I couldn’t have seen or felt the paradoxical middle or other end of those amplified feelings.

I’m not suggesting we try to ‘find the joy or silver linings’ (ugh, toxic positivity alert). I wasn’t expecting joy, but joy found me when everything felt hope-less and black.

How can I be open to these sparks and glimmers or feel light when there’s anticipatory grief and heaviness? The poem in Creating a 'Comfort zone' and rekindling inspiration and Hope over the last few days felt wishful and somewhat out of reach. ³

Conscious of, and intimately aware of, our loved one’s mortality and death, we dance with thoughts that may seem devoid of hope, full of uncertainty and often brimming with grief-rage.

Sitting in the ‘in-between’ sucks. It’s also a place caregivers, especially eldercarers have to settle into or find some reconciliation of being within it.

I don’t want to wish, hope or jump to the ‘afterwards’. Unlike caregiving for children when we can watch them hope-fully grow, there is a finality to eldercare that doesn’t equate to a ‘hope-full’ goal.⁴

So, as I continue to try to help my friends, I’m using podcasts, music and journalling to spark some inspiration and ‘aha’ moments. To bring ‘hope’ closer to my reality. I want to reframe hope into something that is meaning-full and can help me be hope-full— to enrich my outlook on life; This caregiver’s hopeful lens.

In this space where we can’t ‘control’ or predict, we can reclaim some agency in our attitude, how we hold space with others, and how we show up for ourselves.

In this instance, treadmill movement isn’t enough to process emotions. Creating more insights and patterns, connecting dots in my frame of reference, could kaleidoscope the dark to light.

Caveat: Each person’s lens differs, like emotions forged through personal experience. Perhaps something will resonate here, perhaps not. Here’s my frame of hope for December 2024.

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Reframing Hope by Victoria

Hope that I can move and navigate my way forward while carrying fear
That suffering will not paralyse me or stop me.

Hope that I can still be curious and mindfully present to recognise the tiny sparks of inspiration when they appear
That I’m not blinded by focusing on the future, trying to fast-forward time, wishing it or wasting it away and missing the meaningful moments of learning and growth.

Hope that even when I’m in pain, hurting, or my heart's breaking, I can hold pain loosely enough to let in the light
That I’m not hunkering down, tight as a ball, shielding myself so much that I block out the light.

Hope that I can be soft enough to feel it all, brave enough to continue and open enough to sit in empathy
That I’m not dismissing, imposing my thoughts or trying to protect myself from the pain prophylactically— not fully connecting with the world and people around me.

Hope that I can set healthy boundaries AND stay curiously open, soft-fronted, and wild-hearted with a strong (armoured, if necessary) back.
I can ‘swim within this sea of uncertainty’ and connect with others in our pain. 
Waste less energy struggling
Thrive with the life that’s here
Meaning-FULL not skating
Nor berating myself, 
No guilt

Hope that engaging fully, vulnerably thriving in this here and now
curates meaningful memories and moments 
with loved ones and the world as it is, 
Not how I wish it were
to nourish and sustain me moving into the future

Sending some hope and hugs.

Let me know how you define hope for yourself, or share your thoughts on these podcast episodes. Take care.

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References:

These are the key podcasts that inspired this poem, alongside journal entries:

1. Victoria’s journal quotes:

‘The worst of times has moulded my definition of hope, walking through the fire, shaped my thinking.’

‘Time is my most precious commodity, that I can’t waste, spend or offer need-less-ly or without thought.’

‘I’m not trying to create a hero narrative to recount later. I want to thrive in the liminal moments and live within the tiny boring of today. I don’t need big or swanky events, applause or external validation to feel what I know is right and good inside.’

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2. Podcast: On Being with Krista Tippett.

(Krista Tippett⁵) Brené Brown: Strong Back, Soft Front, Wild Heart (2 January 2020)

Discussing Brené’s book Braving the Wilderness The Quest for True Belonging and the Courage to Stand Alone

Brené on talking about our fears [Timestamp 22:06]

Now you hold fear in front of you, and you say, We're fearful. We're in so much uncertainty, there's so much change at such a rapid rate. If you hold fear in front of you, it doesn't dictate your behavior. But I think because we've lost our capacity for pain and discomfort, we have transformed that pain into hatred and blame. It's like it's so much easier for people to cause pain than it is for them to feel their own pain, right?

Brené talking about putting ‘civility’ into actions [Timestamp 26.08]

So I really wrestled with that as I started looking and doing a research review and trying to understand what civility was. I mean, I came across this definition from a nonprofit based in Houston, the Institute for civility and government, that civility is claiming and caring for one's identity, needs and beliefs without degrading someone else's in the process. I mean, it goes on for another like 10 lines, but if we could just get that part, I think we'd have it nailed so claiming and caring for my identity and my needs and my beliefs without degrading yours.

Krista and Brené discussing strong back, soft front, wild heart [Timestamp 26:50]

Krista: ..the third leg of these, these four elements of belonging, strong, back, soft, front, wild, heart kind of starts to get at what that looks like.

Brené: Yeah, I mean, I think that to me, I first heard that the saying strong backs soft front from Joan Halifax, who's a Buddhist teacher, and it spoke to me at the time, and I thought, I don't know what that is, but it sounds, of course, paradoxical, and I don't like it because it sounds hard. I'd rather have a strong front and a strong back and a strong everything. Our deepest human need is to be seen by other people, to really be seen and known by someone else. And if we're so armored up, and we walk through the world with an armored front, we can't be seen. And so I think when you go back to speaking truth to BS and being civil, it requires that strong back, but it requires that soft front.

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3. Podcast: A Slight Change of Plans⁶ (Apr 24, 2024) Maya Shankar.

Spotify links: Life, Interrupted with Suleika Jaouad Part 1 and Part 2

Suleika Jaouad was diagnosed with an aggressive form of leukemia when she was 22 years old. In this special two-part conversation, she talks with Maya about why she sees survival as a creative act, the problem with narratives that frame illness as a "hero’s journey," and the messy space that exists between illness and wellness.

Not a Hero Journey Narrative Suleika [Timestamp Part 1 22:27]:

I began to read every narrative that I could get my hands on but so many of them were beautifully written and wrenching and you know profound didn't speak to me because more often than not, they were written from the perspective of someone who had survived and I started to notice that there was this kind of Heroes Journey Arc to illness narratives where you return from the thing that nearly killed you better and braver and stronger for what you've been through and that couldn't have applied less to me.

I was terrified I was struggling I was isolated and I wanted to put all of that into ink and so what I began to do was to write about the very things that felt impossible to talk about I wrote about the infertility caused by my cancer treatments I wrote about the experience of falling in love of while falling sick I wrote about the in betweenness of young adulthood I wrote about navigating our healthcare system

Part 2 Talking about Quinton Jones [Timestamp 7 minutes]:

a reminder again of that idea of survival being its own kind of creative act but also how profoundly resilient and tenacious the human Spirit can be.

Discussing her relapse [Timestamp 17:35]:

I also don't think suffering in and of itself serves a higher purpose but I do think that suffering brings you down to your most Primal self. It heightens all of the worst things and all of the most important things and I think that's useful information and I think you know part of the work for me has been stepping outside of my own story of suffering and when I do that when I can you know Step Beyond Myself and listen to someone else's story really listen to it I feel and learn again and again that we're more alike than we are different.

‘The endless work to swim in that ocean of uncertainty’ [Timestamp 18:47]:

Unlike the first time around there's no cure in sight for me I will be in treatment some form of treatment for the rest of my life however long or short that may be and so I've had to make it my work. It's sort of my endless work to swim in that ocean of uncertainty and I'm you know in a more heightened and between place than maybe ever before

‘Living each day as if it were my first’ Timestamp 19:59:

Now I've had to shift to a different head space and the way that I found my sea legs within that uncertainty is not in the grand gestures it's not in you know wringing as much as I can out of life. It's trying to live every day as if it's my first to wake up with a sense of wonder and playfulness and curiosity that a newborn baby might and so every day I wake up afraid but I have to find that tiny little thing that makes me curious that tiny little joy that makes me smile and and when I do that, it's like exercising a muscle and so that's what I'm doing and that's more than enough

I highly recommend listening to both episodes of this interview between Maya and Suleika. If you haven’t already, I highly recommend subscribing to

The Isolation Journals with Suleika Jaouad

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1. The short-version facts of my caregiving story! After a career climbing the corporate ladder, I made a head-heart-gut-aligned decision to help my Mum care for my Dad. He had a litany of health issues that were destabilised by a major hospitalisation in 2015: congestive heart failure and rheumatoid arthritis were compounded with a diagnosis of vascular dementia and then bladder cancer.

I stepped away from work for a year, returned for six months, and then resigned from the ‘big’ corporate job in 2017. In 2016, my father had his first bladder transection operation, and over the following year, the plateaus of the stable-calm routine became shorter and shorter. Dad passed in January 2020. Shortly after his funeral, we moved to another rollercoaster— treatment for Mum’s cancer.

2. In December, I want to focus on hope rather than sadness—no toxic positivity, silver linings, or denial of the yuck. I’ve found that podcasts, music and other well-chosen stimuli and connections to insights can comfort me. Those moments that I can say, ‘I’m not alone in thinking this! Oh, that’s a great way of articulating it.’ Acknowledging the needling angst and uncertainty, I choose to rekindle inspiration and connect with compassion curiously.

3. Over the last few weeks, close friends have been in what I call the darker days of the cancer journey. Practical and supportive on the outside, recognising grief and sadness on the inside.

4. Of course, there IS an ‘afterwards’, and that new period I’ll embrace. BUT I never want to wish time away or skip over the here and now to get there. I believe in making the most of life as best I can.

5. Krista Tippett (and a brief history and the “why” of On Being)

Krista Tippett is a Peabody Award-winning broadcaster, a National Humanities Medalist, and a New York Times bestselling author. She grew up in a small town in Oklahoma, attended Brown University, and became a journalist and diplomat in Cold War Berlin.

6. Maya Shankar is a cognitive scientist and the host and executive producer of the podcast, A Slight Change of Plans. [From Wikipedia] A Slight Change of Plans was first published in 2021 by Pushkin Industries, the media company co-founded by Malcolm Gladwell and Jakob Weisberg.

A Slight Change of Plans explores what happens after a person experiences a life-changing event. It’s inspired by Shankar’s experience as a young classical violinist, training at Juilliard, whose career was cut short by an injury. “My whole childhood revolved around the violin, but that changed in a moment when I injured my hand playing a single note,” said Shankar. “I was forced to try and figure out who I was, and who I could be, without it.”