Breathing Wind

How do you let go of making everything perfect when caregiving? In this episode, Rachel Mark, Lucy Bellwood and I had a conversation about caregiving. Rachel Mark is a fabrication artist for stop-motion animation and an ADHD/Creative Coach. She took care of her brother, Daniel, who was born with epilepsy and cerebral palsy, and her uncle, Lou, when he was diagnosed with MAL syndrome. Lucy Bellwood is a professional Adventure Cartoonist, writer, and educator. She is taking care of her father, who has moderate stage dementia. This is part one of a two-part episode. The first part is really about letting go — letting go of perfection to be a better caregiver — letting go of expectations of your loved one — and letting go of future expectations. The next part, to follow, is all about being held within (the “self-care” episode).

This episode is part of a Breathing Wind miniseries titled Caregiving Journey, hosted by Breathing Wind founder and host, Sarah Davis. The Caregiving Journey miniseries explores:

• How stories of other caregivers can help us feel less alone
• Ambiguous grief and caregiving at end of life
• The shifting roles of the caregiver
• How and why to seek self-care
• Joy in the caregiving journey

In this ~48-minute episode, Rachel, Lucy and Sarah talk about:

• 03:08: Background on Rachel’s virtual accountability / self employed / freelancer coffee shop turned “emotional support animal” version of a coffee shop
• 08:30: “It's very easy to feel isolated, even when you aren't actually isolated.”
• 09:17: The relationship changes when caregiving
• 10:31: Rachel’s story of caretaking for her uncle Lou with MAL Syndrome
• 12:55: Lucy discussing the negotiation process with another caregiver (her mom) and how she has had to let go of perfectionism when it comes to caregiving
• 18:56: “And I think there's a panic around when we're taking care of someone. And the only thing we can control is how well we're administering the meds on a daily basis and how well we're making sure they're doing their physical therapy. And so we kind of start obsessing and fixating on all of this little minutiae of like he has to get his breakfast exactly at this time.”
• 19:32: “It's a constant reminder of all the things that we can't control.”
• 23:28: Rachel discusses the importance of setting boundaries in her life and how it helped with caregiving for her uncle
• 30:30: Lucy recalling a situation when she noticed her father’s decline due to vascular dementia.
• 31:48: “Grief is 100% the loss of your dreams of a future together and creating new memories.”
• 34:08: Anticipatory grief
• 37:18: How Rachel dealt with the coming and going, as well as staying true to herself while caregiving
• 39:44: Reflections on long-distance caregiving (the “Swooping in” thing)
• 41:35: How to get yourself out of the mindset of task-orientation to provide better care
• 44:22: “And so I've been trying to recognize that the things that are good for my dad are not always the things that he enjoys the most. And there are certain things that I think crisscross both directions.”

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Who is advocating for cancer awareness in your state? What is their story? In this episode, Kandis Draw and I have a conversation about her caregiving and cancer advocacy. Kandis Draw lives in Chicago, is a classically trained pianist and a lover of philanthropy. She is a member of the Aids Foundation of Chicago Associate Board, Gilda’s Club Chicago Associate Board, and is an active National Advocate for the Ovarian Cancer Research Alliance. She has written articles for NOCC National, and Splash Magazine. She writes a column at Curvicality Magazine which is an online magazine focusing on body positivity for plus-sized women. She lost her mom to ovarian cancer in 2014 and since then, has been advocating for ovarian cancer awareness.

This episode is part of a Breathing Wind miniseries titled Caregiving Journey, hosted by Breathing Wind founder and host, Sarah Davis. The Caregiving Journey miniseries explores:

• How stories of other caregivers can help us feel less alone
• Ambiguous grief and caregiving at end of life
• The shifting roles of the caregiver
• How and why to seek self-care
• Joy in the caregiving journey

In this ~28-minute episode, Kandis describes:

• [1:26] How Kandis became a caregiver to her mom with late-stage ovarian cancer
• [2:24] Ovarian cancer is harder to detect than other gynecological cancers
• [3:54] Caregiving is a full-time job
• [5:28] How Kandis discovered her community of supporters
• [7:24] Kandis’ mom did not choose the traditional route of cancer treatment
• [8:37] The value of venting to understanding friends
• [9:45] Sandwich caregiving: how she assumed both roles as a mother-figure to her brother and sister while caring for her mom
• [11:54] Kandis’ caregiving tips
• [15:26] Kandis’ advocacy work and how it helped her find meaning in her loss
• [20:00] Caregiving and then finding work afterward is not easy
• [24:17] Kandis’ encouragement to utilize resources as cancer caregivers

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"Personally for me, joy is my inherent nature. I really do feel it to be the essence of who I am and how I move through the world, which is interesting because so much of the work I do is around grief and loss and dying. And yet those experiences and journeys are so much more expansive than we might believe them to be, and are capable of holding joy, too, and many other positive emotions that we might not associate with them.”

• Naila Francis

This episode is the trailer for the Breathing Wind miniseries titled Joy as Resilience, hosted by Naila Francis. The Joy as Resilience miniseries explores why embracing joy is not frivolous and how cultivating it can help us weather challenging times and open our lives to greater connection and purpose.

As a writer and a grief coach, Naila’s work is often informed by her love of poetry, the gifts of healing rooted in nature and community and her commitment to expanding our grief, literacy and death awareness.

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“Chemo was really hard. But there were really good days too – they weren't the best feeling healthy days – but there was something that happened on those days. You suddenly have the shift in perspective of appreciating the smallest things, because when you have something that's knocking you, sideways, weekly – I was having chemo every week for 12 weeks – when you have a good moment, the world is more colorful, and everything becomes more incredible. And I got to push my kids on a swing and I was out of bed! All those things become just what living is all about.”

- Carly Moosah

This episode is part of a Breathing Wind miniseries titled Finding Unexpected Joy, hosted by Sarah Davis. The Finding Unexpected Joy miniseries explores the idea that joy can happen in the midst of grief, and that maybe we don’t know yet what might come out of our grief journeys.

In this episode, Sarah talks with Carly Moosah about her mom’s cancer diagnosis and then coming to terms with her own, her perspective on joy in the midst of cancer treatment, and advice she provides for others undergoing cancer treatment. Carly is the co-founder of www.keepemquiet.com, a writer/blogger, breast cancer advocate & survivor, and mum of two. She’s based out of London.

Carly and Sarah talk about:

• Carly’s family history of breast cancer and her mother's experience
• Carly’s fear of cancer and how she shifted her perception toward that of fascination
• How she speaks to her kids about cancer, versus how her mom spoke to her
• Cancer’s warrior mode
• Carly’s advice for listeners

Related resources:

• Carly’s Instagram
• Carly’s Linktr.ee
• Carly’s interview on The Motherless
• Mum Guilt, article in Future Dreams by Carly
• Signs: The Secret Language of the Universe

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“[Grief] breaks us open, which we may not expect. There's some allowing that has to happen. I'm going to allow this to break me open, to grow a new heart, to connect with people in a more meaningful way, to live a life that's more authentic. I think the breaking open, while it can be hard and scary, speaks to grief as a generative force and the ways it can deepen and enrich your life.”

- Naila Francis

In this week’s episode, our season finale, we reflect on our conversation with Grammy-nominated jazz vocalist Nnenna Freelon. We look at a moment that landed very differently for each of us during that conversation, sharing our takes on why we thought her candid retelling of her husband’s final days should and shouldn’t have been cut. We have fun recalling some of the signs our dads send us to let us know they’re near, including the songs that bring them closer to us — don’t worry, we spare you the actual singing of them. And appreciating Nnenna’s affirmation of each griever’s unique experience, no matter her own wisdom from walking the path, we talk about what was most helpful to us in the immediate aftermath of our losses. We also unwrap what her phrase “Anger doesn’t store well” means to both of us and the place anger has in the spectrum of grief. And given that this is our season finale, we do look back on the podcast’s evolution and the conversations that have brought greater depth to the season. We hope you agree, and that as usual, you find room for your own story as you listen in.

To find out more about this episode, listen to the episodes referenced, and subscribe to the newsletter, visit the show notes.

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