Caregiving Unmasked
Allison Breininger, Caregiver, Advocate, Podcast Co-Host
Welcome to the fourth installment of the National Cancer Survivor Month series on Navigating Cancer TOGETHER. This episode is dedicated to all the caregivers who tirelessly support cancer survivors/thrivers, often without recognition or sufficient support. I was honored to have Allison Breininger, the founder of The Negative Space, share her insights and experiences with me and the NCT community.
Acknowledging Caregivers
"There's a lot of guilt that, you know, who am I to say this is hard on me because he's the one that's had organs removed, chemo, radiation, and surgery after surgery..."
Caregivers play a vital but often unseen role in the lives of cancer survivors. Allison shed light on the emotional and logistical challenges they face daily. She emphasizes the need for acknowledgment, as caregiver tasks and mental loads are immense. The acknowledgment of their efforts can make a significant difference in their lives.
Allison’s Background and The Birth of The Negative Space
Before founding The Negative Space, Allison was thrust into caregiving when her husband was diagnosed with Fanconi anemia (FA). Despite the immense challenges, she found her purpose in transforming the caregiving landscape.
Allison co-hosts the InSickness podcast, provides individual coaching to caregivers nationwide, facilitates support groups, partners with organizations to support caregivers intentionally, and sells caregiver gift boxes. Through her nonprofit, The Negative Space, she ensures that caregivers receive the recognition and support they deserve.
Navigating Personal and Professional Shifts
"So in 2011, in his early 30s, my husband was diagnosed and had a bone marrow transplant. Since then, he has faced multiple cancers... At that point, when he was diagnosed, we had just adopted our daughter from Haiti."
Allison shares the pivotal moment when her husband’s diagnosis altered the trajectory of their lives and aspirations. She candidly talks about how adopting more children and her career in education and AmeriCorps had to take a backseat, revealing the significant sacrifices caregivers often have to make.
The Emotional Toll of Caregiving
"Caregivers often feel like they can't talk about being a caregiver and how hard it is because they are not the one who is sick... They feel like they can't complain."
Allison poignantly describes the unspoken struggles that caregivers endure, from feeling overlooked to the intense mental and emotional weight they carry. She emphasizes how cultural and familial expectations can further complicate the openness required for effective caregiving support.
Transforming Hard Realities into Purpose
"Once I started writing about my experience as a caregiver, people said, 'This is what I'm going through too. Thank you for putting this out there.' That’s when I realized the need for real, honest dialogue about caregiving."
The inception of Allison’s caregiving advocacy began with a blog. Over 13 years, this has transformed into meaningful, systemic change through her nonprofit and various caregiver support initiatives.
Practical Tips for Caregivers
Allison provides several practical suggestions for caregivers and their supporters:
- Acknowledge the caregiver: Simply acknowledging their work can relieve some emotional burden.
- Offer Specific Help: Instead of asking, "Let me know how I can help," propose specific actions you can take to ease their loads, like meal prep or errands.
- Make use of resources: Apps like IANA Care can help organize support from friends and family.
- Self-Care for Caregivers: Allison emphasizes the importance of self-care, whether it's micro-moments of relaxation or larger systemic changes like better calendar management.
Support Systems and Acknowledgment
“Caregivers need logistical support, emotional support, and concrete acknowledgment.”
These specific supports might include practical assistance with daily tasks and open emotional support to discuss and process their caregiving experiences. Allison highlights the importance of efficiently building a support system and using technology and community support.
Joining the Dialogue
"You're part of the story. That everybody's focused on your other person, but that you too are an integral part of this narrative."
Allison reminds us of the critical but often unspoken roles caregivers play. By acknowledging their hard work and providing practical and emotional support, we can help them navigate the complexities of caregiving more effectively. If you are a caregiver or know someone who is, explore resources like The Negative Space and consider reaching out to offer tangible support.
If you’d like to connect with Allison Breininger, learn more about her work, or listen to her podcast, In Sickness, visit thenegativespace.life. Join us in continuing this important conversation and ensuring that caregivers receive the recognition and support they truly deserve.
CaregiverCON
For those interested, don't miss the upcoming caregiver conference on November 2, 2024, in Minneapolis, MN. For more details, visit caregivercon.com.
Let's continue navigating cancer together and supporting each other through every step of the journey.
Listen to the full episode of Navigating Cancer TOGETHER for a candid and informative discussion on the realities of caregiving. Please share this blog and the podcast episode with anyone who may benefit from them.
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Reflection: As a caregiver, how did this episode make you feel? Did it resonate with your experiences as a caregiver?
If you are someone who has had a cancer diagnosis, how did it make you feel? Have you had a conversation with your caregiver?
Resources:
IANA Care - https://ianacare.com
Fanconi Cancer Foundation - https://fanconi.org
Apollo Neuro, https://apolloneuro.com
Other Episodes You'll Enjoy:
Patricia Young: A Journey of Love, Loss, and the Lessons Learned in Cancer Caregiving, https://smartlink.ausha.co/navigatingcancertogether/patricia-young-a-journey-of-love-loss-and-the-lessons-learned-in-cancer-caregiving
Life Beyond Kidney Cancer: Building a Legacy with Micheal and Tatiana Parker, https://smartlink.ausha.co/navigatingcancertogether/life-beyond-kidney-cancer-building-a-legacy-with-micheal-and-tatiana-parker
How to Be a Caregiver with No Regrets with Rayna Neises, https://podcast.ausha.co/navigatingcancertogether/how-to-be-a-caregiver-with-no-regrets-with-rayna-neises
Are you feeling overwhelmed? Take a deep breath and find moments of calm with my FREE Guided Meditation: Calming Your Mind After a Cancer Diagnosis. Download it now and begin your journey to inner peace.
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