Breathing Wind

How might you care for someone at the end of their life when your relationship isn’t perfect? In this episode, Laura Davis and Sarah Davis talk about caregiving when still healing from past traumas, power dynamic flip from child to caregiver and caring for people with dementia. Laura Davis is a six-time bestselling author who leads transformative writing workshops internationally. Her latest book, a memoir, The Burning Light of Two Stars, is about the dramatic twists and turns of mother-daughter love.

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 ~41-minute episode, Sarah and Laura talk about:

• [3:08] Relationships are complicated, which makes grief complicated
• [3:42] Laura’s relationship with her mom
• [9:10] Reconciliation
• [10:03] What was going on in Laura’s life when her mom decided to move to her city and how she processed that
• [12:43] Excerpt from Chapter Two, “The Call”
• [19:41] Laura’s reflections on the call
• [25:11] Caring for someone with dementia
• [25:30] “One of the things that was so confusing to me about dementia in particular is that it's like tuning into a radio station. And sometimes the signal is clear. And sometimes it isn't.”
• [26:51] Entering the world of someone with dementia
• [29:54] What Laura means by explaining she had to wear a “good daughter mask”
• [30:13] “There always was a buffer, and if it wasn't geographic, then it was just that I wasn't going to really share; I never really felt I could share my intimate life with her -- ever. I didn't feel like it was safe to do that. And yet we managed to have a healed relationship. You know, it had some cracks in it.”
• [30:25] “As she changed, the dynamic between us changed.”
• [31:53] How Laura moved her mother to an assisted living facility and her feelings after
• [35:13] “The fight went out of her. And she acquiesced to being there. And she started to feel like she belonged. And it was actually really sad. I mean, on one hand, she became much easier to manage. For me, because she wasn't the fiery, intense emotional woman she'd always been, she became quite passive and sweet, actually. But I felt like this person isn't really my mother, it was like I was dealing with a different person.” 
• [36:10] “Anyone who cares for someone with Alzheimer's or [another] dementia is pretty much in a constant state of grief. You're grieving for the person while they're still here. And it's a really sad process.” 
• [38:04] How caregiving has transformed who Laura is today
• [39:39] Information on Laura’s book release and pre sale campaign

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What are mantras? What is their purpose? In this bonus episode, I explore this concept and Serena Malkani provides a caregiving mantra.

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

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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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How might you care for yourself while caregiving? In this episode, Rachel Mark, Lucy Bellwood and I talk 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 two 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.

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

• 2:05 - “This is a list, I wrote it for both of you, I didn't know you at the time. But almost everyone is gonna face this at some point in their life. And so helping friends be prepared for this thing that is something no one ever trained us for is really important to me.” - Rachel

• 2:32 - How improv can be helpful when caregiving for people with dementia

• 5:47 - “But really, when you're at the center of this, your energy is so precious, and managing it is super important. It's okay to need a break. It's okay to take care of yourself first sometimes and prioritize your energy.” - Rachel

• 7:52 - Reflections on Zen Caregiving Project’s caregiving class and giving self-love.

• 9:29 - The only one who won’t leave you is yourself

• 10:17 - Though self-care is important, it’s also important to lean on community

• 10:59 - Rachel’s exercise to hold compassion and show up for others

• 12:22 - Lucy’s reflections on her self-sufficiency bias

• 15:16 - How people show up when you need it the most

• 16:09 - Lucy’s reflections on the community support she’s had for caregiving for her dad during the pandemic

• 18:31 - “One thing that I did want to speak to is that both of you, I think, are only children. And I'm oldest, my younger brother was disabled. So the three of us have grown up in this concept of we are our own best friend, we are our own person, we have to be so self-sufficient. And it is so humbling when people start offering us help that we so desperately need and then crying releases — I didn't know how much I needed that because we didn't have the bandwidth to acknowledge our needs or the ability to ask for it.” - Rachel

• 20:46 - Learning how to accept help

• 22:55 - Lucy, on being able to accept help after the pandemic: “I would love to have people come over and play music, I would love to have people come hang out with my dad for an afternoon while we go off and do something else. Like there's recognizing that it is going to get easier. As the reopening happens.”

• 24:33 - “You are going to have moments where you feel so desperately lonely, like in a way that is to your core, debilitating. And, in those moments, this is where your brain is going to send you signals that it's not okay to reach out. [Saying], ‘it's not okay to talk to your friends. They're sick of hearing you.’ Because depression has this voice that is all-consuming. It's hard when you're in it to get that sort of objective viewpoint but with the small voice that's inside, you can just start listing off the people that you love that are in your life that care about you and just start saying their names over and over and over again until that voice can get louder and counteract the one that tells you you're alone, you can't reach out.” - Rachel

• 27:29 - How Lucy’s friends have modeled helping

• 29:17 - Rachel, on asking for help: “The best thing you can say is, ‘I just need you to be on the other end of the phone. I just need to hear you breathing.’ And that's it.”

• 30:39 - It may feel overwhelming but it passes

• 34:08 - The desire for perfection in caregiving

• 35:23 - “Nothing in your life will prepare you for this. There’s no course you can take, there’s no master’s degree that you could get.” - Rachel

• 37:00 - How Lucy has relied on intuition to help guide her decision on moving back to be a caregiver

• 40:06 - “No decision is final.” - Rachel

• 41:36 - Trap of resentment

• 42:57 - How to help the person you’re caring for receive self-care

• 47:06 - “[Caregiving] is not a means to immortality.” - Rachel

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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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Cheryl Jones prepared for 10 years for her first wife’s passing. She did this in a way that was true to her and true to how they chose to live. This prepared her to be able to support others. In this episode, Sarah talks with Cheryl about her caregiving journey, her different experiences with loss after her wife died and how her children dealt with the loss. 

Cheryl Jones is a grief counselor, educator and the host of Good Grief, a podcast about transformation after loss. She is also the author of a novel, An Ocean Between Them. Cheryl’s work is informed by the ten years of her first wife’s life limiting illness. Expected to live six months to a year, she lived with cancer for almost a decade. In the losses Cheryl has experienced since then she has been grateful for what she learned about facing loss and finding greater meaning in her life as a result. Cheryl lives in Oakland with her second wife and is grateful for three children, 3 grandchildren and the wonder of living.

In this 40-minute episode, Cheryl and Sarah talk about:

• 2:03: Caregiving for her first wife for 10 years, who was diagnosed with multiple myeloma
• 4:30: “You can’t be prepared for grief, but you can prepare.”
• 5:52: Role of community in Cheryl’s caregiving experience
• 9:53: How finding a coordinator to manage help from the community was crucial
• 11:00: They made lists for delineating the type of help people could provide
• 14:19: The role of anticipatory grief in their relationship
• 17:30: The support Cheryl sought spiritually and emotionally to prepare for loss
• 25:38: How being present during her partner’s death helped her help her parents when they needed caregiving at the end of their lives
• 29:39: How her daughters dealt with the loss of her first wife and how they prepared them with honesty about death
• 35:32: “You can have a sense of direction in these areas, by looking at people who have been where you are, and gotten to a different place. But that doesn't mean you can make yourself get to a different place. It has to unfold in its own time and its own way.”

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

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

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Caregiving is a rite of passage. How might we find joy in it? In this episode, Sarah talks with Jenn Chan, about her caregiving journey, support groups, and how her current work revolves around caregiver joy. Jenn Chan, CSA®, CCC™, is the Founder of Senior Shower® Project, a startup with a mission to celebrate family caregivers of older adults with a party. She creates caregiver appreciation cards, curates caregiver gift boxes, and designs caregiver party kits. While Jenn provided care for her grandma, she developed a passion for caregiving and dedicated her career to elevate the caregiver role with fun, love, and positivity. Jenn also facilitates support groups for LGBTQ seniors, dementia caregivers, and young caregivers.

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

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

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In this episode, Breathing Wind host and producer, Sarah Davis talks about the upcoming mini-series on caregiving.

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

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

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Who writes the roadmap when one doesn’t exist? In this episode, Deborah interviews Naila Francis, a death midwife and grief coach, about her journey to becoming a death midwife and how this work fills a gap for people seeking a different approach to death and dying.

This episode is part of a Breathing Wind miniseries titled Embrace Death, Live Life, hosted by ICU and palliative care nurse, Deborah Szeto. The Embrace Death, Live Life miniseries explores the work of palliative care in healing and how we can live fuller lives while embracing and normalizing death. 

Episode Length: 37 mins.

• 3:41 - Naila’s career journey from journalist to death midwife
• 5:54 - Naila’s views on her father’s experience passing away at a Saint Lucia hospital
• 11:37 - How Naila views what could have been different about how her father died, as well as how grace-filled her experience was to be by his side
• 15:31 - The lack of a roadmap for navigating her father’s death
• 16:04 - Cultural and relational reasons for not having a conversation about death and dying beforehand
• 18:32 - The difference between “death midwife” and “death doula”
• 20:52 - How death midwives and death doulas fill a gap that hospice and other forms of healthcare cannot
• 23:57 - Guiding conversations about wishes and quality of life at end of life and questions Naila asks during consultations with clients
• 29:09 - Working with death changes the way Naila and Deborah live their lives
• 31:38 - Views on working with the full range of ritual and occasions, from baby blessings to end of life
• 34:05 - Families have choice and agency in how to encounter death

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Are chaplains only for religious or spiritual people? In this episode, Deborah talks with Jeffrey Ishmael, a chaplain on the outpatient palliative care team at John Muir health in Walnut Creek, CA, about the role of the chaplain in palliative care, his perspectives having worked in this role, and how this work connects to grief and suffering.

This episode is part of a Breathing Wind miniseries titled Embrace Death, Live Life, hosted by ICU and palliative care nurse, Deborah Szeto. The Embrace Death, Live Life miniseries explores the work of palliative care in healing and how we can live fuller lives while embracing and normalizing death. 

Jeffrey and Deborah talk about how:

• The role of a chaplain transcends much more than religion/spirituality (although that is still important)
• As a society, we have become removed from and fearful of death; it feels sterile and foreign
• Palliative care is about relieving suffering, finding meaning, promoting quality of life
• We have to start normalizing conversations about medical goals and end-of-life wishes

Episode Length: 36 mins.

• [2:54] Chaplaincy: What it is and role in patient care
• [7:49] Jeffrey’s story in how he became a chaplain
• [14:20] It’s all about grief
• [19:56] How Jeffrey encourages patients to think about life and legacy
• [23:45] How the palliative care team works with patients to improve quality of life
• [24:44] Misunderstandings about palliative care
• [29:48] How to have the end of life conversation with loved ones

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