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The Positive Gene Podcast-Ep. 9: Circle of Support: Empowering Caregivers on Our Journey

Updated: Nov 21, 2023

(Links mentioned in the episode are located at the bottom of the page)




Introduction

Welcome to The Positive Gene Podcast. I am your host, Sara Kavanaugh. As we observe National Caregivers Month, a time dedicated to honoring the immense contributions of caregivers, we're taking a moment in today's episode to focus on a crucial, often overlooked perspective in our journey as previvors and survivors. We're exploring how we can support our caregivers, those who stand steadfastly by our side, especially during the challenging times of screenings and test results. Also, given the Thanksgiving holiday this week, It’s a fitting tribute to the dedication and love they show us every day.


Picture this: You're anxious about your upcoming screening – let's say it's a colonoscopy, an all too familiar experience for those us with Lynch Syndrome. In fact, if you’re a “lynchie” or someone close to someone with Lynch, you’ll know the screening process involves not only an annual or biennial visit to your gastroenterologist, but also a dermatologist, ophthalmologist, breast specialist, gynecologist, oncologist and urologist (all may not be required for all mutations but in general most of us are visiting these specialists at least once a year or every other year, depending on your mutation).


So, back to our scene - you’re dreading the uncomfortable prep, and on top of that, you're wrestling with anxiety, worry, and fear about the procedure and potential outcomes. What if they find something? What will I do? This stress or “scanxiety” as it is often called, isn't contained; it spills over, affecting your partner, children, or friends in subtle ways. Perhaps you're more irritable than usual, snapping at small inconveniences. Maybe you're withdrawn, lost in your own thoughts, leaving your partner feeling isolated or helpless in supporting you. Your children might pick up on this tense atmosphere, becoming anxious or upset themselves without fully understanding why. Friends may notice your preoccupation and distance, unsure how to offer support. It's these subtle shifts in your behavior and mood that can change the dynamics in your home, making everyone's life a bit more challenging. They want to help, but may not know how, especially when your focus is so consumed by the upcoming screening or test.

The Integral Role of Caregivers

Now, pause for a moment. Think about your caregiver in this scenario. The upcoming screening understandably consumes your mind, but they are juggling their worries and responsibilities. It's a shared burden, yet experienced differently by each of you.

Family caregivers play an integral role in our journey, often undertaking tasks and emotional burdens that go unseen. From coordinating appointments to managing the household when we're unavailable or perhaps when we’re not in the right mindset to take on daily tasks, their support can be invaluable. Medical appointments, especially for procedures like colonoscopies, often require logistical support…They might have to take time off work, drive us to and from appointments, and offer emotional support during these stressful times. Acknowledging and appreciating their efforts goes a long way in showing our gratitude.


But it's not just about the tasks they perform; it's about the emotional labor they undertake. As previvors and survivors, it's our turn to understand and support them in their journey alongside us. This aspect becomes increasingly significant for those of us with hereditary cancer syndromes, as we face a lifetime dotted with far more screenings and tests than the average person. These aren't just medical appointments; they're emotional landmarks, each carrying its own weight of anticipation, anxiety, and relief or concern.


Currently, my husband and I are at the early stages of this journey. It's a path that, while new to us, is set to be a constant in our lives. The frequency of these screenings can feel overwhelming, not just for me but for my husband as well. He's not just accompanying me to appointments; he's also navigating this new normal where vigilance is key, and uncertainty a frequent companion. Together, we're learning to balance this reality, recognizing that the emotional toll extends beyond the person undergoing the tests. It's a shared experience, one that requires mutual understanding, patience, and support.


As we embark on this continuous path of vigilance, our approach to handling the emotional aspects of these screenings is evolving. We’re learning to communicate more openly about our fears and hopes, and to find strength in our shared resilience. For anyone embarking on a similar journey, remember that while the screenings are routine, the emotional journey is deeply personal and requires its own form of care and attention.


So what are some practical tips for easing caregivers' burdens?

As previvors and survivors, we can contribute by easing our caregivers' burdens. This can include organizing our medical information for them, being proactive with household tasks before a scheduled procedure, or even taking on or finding support for small responsibilities to give them a breather. It's about creating a balance where both parties feel supported and valued.


Promoting caregiver self-care is another aspect we shouldn't overlook. Caregivers often put their health and well-being on the back burner while focusing on ours. I have a close friend who’s cared for her mother with breast cancer for the last year and it’s been tough to watch from a distance since she had to put her life on hold to care for her mother. But you know what, it’s okay! Her purpose in giving her mother the dedication over the last year enabled her and her children to grow closer than ever to their grandmother. It’s looking for those silver linings in an otherwise difficult situation. We checked in often and sent gentle reminders to be sure she was taking care of herself. Throughout these experiences, we need to encourage and support caregiver well-being just as they support ours.


Communication is vital in any relationship, and it's no different with our caregivers. For instance, during the tense periods of waiting for test results, understanding each other's emotional needs can make a significant difference. Ask them what they need – is it space to process their emotions or more direct involvement in our medical journey?


In the midst of this, it might be hard to express precisely what you need from them. But sometimes, a simple acknowledgment can make a world of difference. Consider saying something like, "I know I'm really consumed by this procedure and the anxiety it brings. I may not know exactly how to tell you what I need, but knowing you're here is a tremendous support.”


In fact, this is a good time to share something my husband often does – it’s providing distraction and emotional support during the waiting periods for test results. Whether it's planning a family outing or just spending quality time together playing games with our kids or a dinner out, these actions, though simple, can significantly alleviate the stress and anxiety associated with medical uncertainty. It's these small acts of kindness and understanding that make a huge difference in our journey.


Conclusion

Our journey has moments of fear, anxiety, and uncertainty. Still, there are also moments of incredible support, understanding, and love. These experiences, shared by the caregiver and the cared-for, weave the fabric of our unique stories. It's essential to remember that this journey is not a solitary one – it's a shared path where empathy, understanding, and mutual support are key.


So, to all caregivers, know that your efforts are seen, your sacrifices are acknowledged, and your love is deeply appreciated. And to my fellow previvors and survivors, let's ensure we do our part in supporting those who support us. It's about giving back, showing appreciation, and building a partnership that navigates the complexities of our journey together.


In fact, Harvard Health say, “In positive psychology research, gratitude is strongly and consistently associated with greater happiness. Gratitude helps people feel more positive emotions, relish good experiences, improve their health, deal with adversity, and build strong relationships.” It further states, “Gratitude helps people refocus on what they have instead of what they lack. And, although it may feel contrived at first, this mental state grows stronger with use and practice.” If you want to read more on this topic about how “Giving thanks can make you happier” from Harvard Health this upcoming Thanksgiving season, I will leave the link in the show notes.


As we wrap up today's episode, I encourage you to reflect on your relationships with your caregivers. Think about the small ways you can show your appreciation and support. Whether it's a simple thank you, helping out with a task, or just spending quality time together, these gestures can make a significant difference.


For me, this episode is one way to recognize those who have supported me over the last year - my husband, Nick, my siblings and their spouses for being here following surgeries and their continued notes of encouragement; my friends and neighbors who've checked in brought meals and continue to support me by listening to my podcast… You're all amazing, and I love each and every one of you.


Thank you for joining me on The Positive Gene Podcast. Your stories, your struggles, and your triumphs inspire each episode. If you have any experiences or tips you'd like to share or want more information and resources, please reach out. You can find additional support and details on my website at sarakavanaugh.com or on Instagram @positivegenepodcast.


Let's continue to build this community of support, understanding, and hope. And remember to subscribe for more episodes where we explore the empowering journey of being hereditary cancer previvors and survivors, together with our incredible caregivers.


You can find more information at Caregiver Action Network's website at caregiveraction.org. If you are a survivor or caring for a survivor, the National Cancer Institutes's "Support for Caregivers of Cancer Patients" is an excellent resource for coping with caregiving, taking care of yourself, and even long-distance caregiving tips. Links will be provided in the show notes.


As we close this National Caregivers Month and Thanksgiving special episode, let's remember to show gratitude to those who care for us. Here's to our health, happiness, and the positive support we give and receive.

Until next time, stay informed, stay empowered, and remember you have the strength to navigate your journey positively.


Links referenced in this episode:



Copyright © 2023, Sara Kavanaugh. All rights reserved.

All content on this blog, including text, images, and any other original works, unless otherwise noted, is the sole property of Sara Kavanaugh and is protected under international copyright laws. No part of this blog may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law. For permission requests, write to the author at sara@sarakavanaugh.com.

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Guest
Nov 22, 2023

Thanks for sharing!

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