44: Advocate and Caregiver

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

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

• 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 yo...