42: Letting Go

08/17/21 • 48 min

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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This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit www.breathingwind.com

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.

Connect with us on social media:

Facebook

Instagram

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit www.breathingwind.com

Previous Episode

41: Staying in

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.

Connect with us on social media:

Facebook

Instagram

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit www.breathingwind.com

Next Episode

43: Being Held

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...