Episode 43: Being Held
“A lot of the time, what allows us to stay ‘functional’ (in scare quotes) as caregivers is this feeling of, I can't look directly at the magnitude of this because it will overwhelm me; it will drag me [down]. I think the only way [out], that I have come to learn — that the feeling is real, but the truth of it is not — is that you just have to come through it so many times to understand that, okay, I've been here before, I've been on the floor, feeling crippling, existential loneliness; I've thought that nobody will ever hold me ever again in my life. And that was then, and this is now. These things change over time.”
- Lucy Bellwood
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
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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 you’re caring for receive self-care
47:06 - “[Caregiving] is not a means to immortality.” - Rachel
Additional Resources:
You can connect with Rachel Mark online at www.racheldmark.com, and on Instagram @racheldmark.
You can read Lucy Bellwood’s work for free at lucybellwood.com, or find her on social media as @LuBellWoo
You can also support her work directly at patreon.com/lucybellwood
Rachel’s List
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