Introducing Caregiver Support Conversations: Meet Co-Facilitators Liz Piña and Kelly Theberge

This National Family Caregivers Month, the National Brain Tumor Society launched a new monthly support group called Caregiver Support Conversations, where care partners can talk about the feelings and emotions accompanying any aspect of the brain tumor experience in a welcoming space.

Volunteer co-facilitators Liz Piña and Kelly Theberge host this support group for caregivers currently supporting a person living with a brain tumor to connect on topics that matter to them. 

In the conversation below, Liz and Kelly share their personal stories and how community support can benefit care partners. 

Briefly share your connection to the brain tumor community and how you got plugged in with NBTS. 

Kelly: After my dad passed away, I wanted to somehow change the world of brain tumors. I decided to fundraise in Maine for brain tumor research. I researched who to donate my money to and found NBTS. After the first year of fundraising and donating to them, I received information in the mail about Head to the Hill. 

My life was changed forever after attending my first Head to the Hill. The connections I made that weekend, the feeling of family, and the overwhelming support and motivation were incredible. Since then, I’ve been a part of the NBTS family in so many aspects — community fundraising, being the Maine state lead for a number of years, many Zoom calls and in-person events related to advocacy, and now the support group!

Liz: My husband Julio was diagnosed with a brain tumor called ependymoma in 2018. When he had a recurrence in 2020, we both leaned into the brain tumor community. Our introduction to NBTS was through the monthly Brain Tumor Support Conversations, which is facilitated by some of our favorite people.

I kind of accidentally signed up for virtual Head to the Hill in 2021 and found it really rewarding, so we attended in person in 2023 and 2024. Somehow, in the middle of all that, we got connected with the marketing team and shared our story as it developed over time.  

What are some unique challenges that brain tumor caregivers face, and how does this support group aim to address them?  

Kelly: I’ve always said brain cancer is so different from other cancers. It’s difficult to diagnose early on and difficult to treat. The side effects of treatment and the disease are physical, cognitive, and, of course, emotional. This disease hits hard and fast. With few treatment interventions, especially based on the location of the patient and family, it can be incredibly challenging. Providing specific resources, pointing them to NBTS staff who can assist, or even just being a person to validate them will make a difference.

Liz: The brain is the control center of basically every part of the body, so caregivers may have a narrower or wider range of responsibilities depending on the situation. Often, brain tumors can cause issues with cognition, memory, speech, mobility, impulse control, seizures, or mood. All of these create a need for the caregiver to help with or take over certain areas of responsibility that may be completely outside their comfort zone. As caregivers, we become personal assistants, medication managers, and even plumbers at times. It can be a really difficult role to fill, but there is something special about saying out loud in a support group that you are struggling with a particular aspect of being a caregiver and seeing lots of nodding heads in agreement and sometimes even getting tips and tricks to deal with certain challenges.

As a co-facilitator, what do you hope participants will take away from these sessions? 

Kelly: Knowing they’re not alone. It can be a lonely process for some, and just knowing there are other people out there who understand can give a sense of relief. Also, I want to provide any assistance and help they might not have known about before the support group. Sometimes, even doing the research for help can be exhausting, so providing them with this information could be useful.

Liz: I hope participants will feel seen and heard as caregivers and feel less isolated when they share their experiences with others who understand them. I hope this one hour a month will give caregivers the breath of fresh air they need to get through the next few weeks.

How can caregivers feeling isolated or overwhelmed benefit from participating in these conversations? 

Kelly: Seeing there are other people currently experiencing the same situation will definitely be helpful. Hearing your feelings being validated is always calming. Connections like this support group are usually connections that will last a lifetime. I hope people get connected in this support group in ways I have been connected with NBTS.

Liz: In all honesty, most people have no idea what daily life is like for caregivers of brain tumor patients, but other caregivers totally get it. I regularly hear people new to caregiver groups say, “There’s no one I can talk to about this stuff.” This is a safe space where anything and everything from hopes and dreams to fears and frustrations can be unloaded without fear of judgment. It’s an hour a month where life revolves around the caregiver instead of the survivor, and people may even find themselves connecting with other caregivers outside the group to provide more regular support to each other.

What type of topics will come up in a group like Caregiver Support Conversations? What can someone expect from participating in a session? 

Kelly: We have discussed letting the participants tell us initially what they would like to hear/discuss. I suspect it would be topics related to resources – resources for the patient’s overall process or resources to help the caregiver get relief in any way. Maybe topics in general related to current feelings, or them telling their story – as just speaking about the topic is therapeutic, even if there isn’t any resolution.

Liz: Some common themes I’ve seen in caregiver groups are caregiver burnout, managing side effects and/or changing capabilities, dealing with emotions and outside relationships, anticipatory grief, small wins and big life moments, and planning for the future. We want to know which topics participants are interested in so that we may be able to bring those topics up in the group if the situation presents itself. There’s a space on the registration page to include topics of interest. Participants can expect some tears, some laughter, and a lot of nodding heads as people relate to what they are saying.

How have you personally benefited from the support of the brain tumor community? 

Kelly: When I was going through the journey with my dad, my family did not have a single soul who understood this specific journey. It was incredibly lonely, frustrating, and hard. Years later, when I found NBTS through my fundraising, I found connections that are life-changing, lifelong, and the strongest connections I’ve ever had. The brain tumor community is fierce.

Liz: When my husband was diagnosed with a brain tumor, we were shocked and a little lost. Sharing our experience with others in the brain tumor community has given us validation of our feelings and experiences, a different perspective on what’s important in life, and a place to feel at home when we can otherwise feel a bit displaced. 

Is there anything else you would like to share with caregivers considering joining the group?  

Kelly: You won’t regret it. The hardest part about joining is deciding to do it. After that, you’re hooked. NBTS is a family – they’re always here to listen, provide support, and help in any way they can. I’ve been a part of NBTS for almost 12 years, and I can’t imagine my life without them.

Liz: Joining a support group specific to brain tumor caregivers is the single best thing I’ve done for myself since my husband’s diagnosis. It has changed my perspective on my role and experience by showing me that other people have very similar experiences and that I am not alone on an island. Sometimes, a support group like this can be heavy; other times, it may be light-hearted. 

My very first caregiver support group started with someone saying goodbye because their loved one had passed, and it felt like maybe this wasn’t a good fit for me, but I kept showing up. After a few times, I realized it was exactly where I needed to be. Hearing other people’s challenges can be scary, but give the Caregiver Support Conversations group a few sessions to decide if it’s a good fit for you. Remember that while many of our experiences as caregivers overlap, everyone’s circumstances are slightly different.

TAGGED WITH: caregiver, caregiving

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