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Breathing Wind

Aug 17, 2021

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.”

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

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