Samantha Null, MSS, LCSW, and Lucretia Hurley-Browning, MDiv, MS, strive to provide care for the caregivers.
A cancer diagnosis can be overwhelming and distressing not only for the patient, but for everyone in their circle. To provide different levels and types of support to patients and loved ones alike, the Abramson Cancer Center at Pennsylvania Hospital has an ever-revolving calendar of complementary therapies, workshops, events, and groups aimed at offering education and encouragement and building a safe, hopeful community. One of these ACC support groups is geared specifically toward caregivers and is headed by chaplain Lucretia Hurley-Browning, MDiv, MS, and Oncology social worker Samantha Null, MSS, LCSW.
“Some caregivers have ‘fixer’ attitudes and can start to panic when they realize that the circumstances are out of their control, while others might feel lost and like they can’t grasp what their loved one is going through,” Null said. “The group aims to bring together caregivers who have been rocked by a diagnosis so they can start to adapt to their ‘new normal’ with a support system.”
The group typically meets once every two weeks, and while drop-ins are welcome, other members come more frequently, such as when their loved one is upstairs receiving treatment. Common discussion topics have included dealing with an unpredictable and ambiguous future, especially when “loss” occurs in series of stages; adapting to a changes in intimacy, particularly if the role of “caregiver” overshadows the role of “spouse”; talking about illness and death with children; what questions to ask doctors and what educational resources to use; and what self-care for the caregiver looks like.
“Sometimes we’ll prepare a theme, but we’ve never really needed to prompt conversation,” Null said. “The group typically starts with mindfulness and breathing exercises to focus on the moment and tune out all the noise from the outside world. That really opens everyone up and creates a safe, quiet space to vent, share experiences, talk about coping tips or advanced care planning —”
“Or just to listen,” Hurley-Browning finishes. “We’ve nicknamed this ‘The Nodding Group,’ because no matter what someone’s talking about, there are always others nodding along. There’s a lot of power in this shared experience. People of all ages come to these groups, and being able to say anything you need to say without judgment, without being held accountable for it, without worrying about your emotions being perceived as a burden – it really helps people to feel less isolated.”
For those who see the value in a support group but are unable to physically make it due to transportation, scheduling, health status, or other circumstances, Null and Hurley-Browning have developed an alternative. Caring Connection is a private, online community for patients, caregivers, and staff to access the support and resources they need, whenever they need them.
Introduced in April 2017, the heart of Caring Connection is the weekly blog posts that cover topics ranging from palliative care, to hair loss, to “Mindful Monday” inspiration. A calendar of events featuring both ACC and local, non-Penn events is listed, and there is an abundance of information about additional services. As the platform continues to evolve, Null and Hurley-Browning hope to add additional features like a book recommendation section, guest blog posts, and more consistent interaction.
“Our goal is eventually get every patient and caregiver onto Caring Connection,” Null said. “Some people just can’t make it to a regularly scheduled group, while others aren’t really into support groups at all. There are so many different resources on there that fit whatever you need, so we’re aiming to grow our audience and to keep evolving.”
To learn about other complementary cancer therapies and programs at PAH and throughout the health system, check out System News!
Reflections from the Caregivers
Null and Hurley-Browning often hear from support group attendees even after their loved one has finished treatment or has died. Read some of the heartwarming feedback they’ve received below.
- “I cannot tell you how necessary it is to be able to share this caregiver experience with others who also share this difficult time. Others who can REALLY understand what I am going through. These ‘strangers’ have become vital a part of my life.”
- “Thank you so very much for still having the support group. I didn't really know how deep-seated the pain was about the possibility of leaving my girls behind without their mom...or how scared I was to be both mom and dad. The group helped me think outside my role and care for myself, so I could in turn do a better job of caring for my kids and wife.”
- “Support group for me is like being able to breathe again when you are underwater! I may be still underwater, but I’m not suffocating. I actually get air and [don’t] feel like I’m drowning. Thanks for this incredible experience.”
- “I came into the group at just the right time, although I didn’t know that. I was going under and the group kept me going. When my wife crashed it threw me. But if I hadn’t been going to group I would have crashed too.”
- “I so want to come back to see you and the support group, it is just still too hard. I could write a volume on what the whole team has meant to me and my girls. My husband and I had been high school sweethearts and did everything together. I did not know how to go forward without him. I know I seemed so strong to everyone, but I was a basket case inside. I am so grateful that you could see that and were so gentle with me as I fell apart that day. I was terrified. I remember you telling me that I would go through what was ahead of me, step at a time, and that my strength would indeed come, that it would be different and that it would grow as we moved forward. That has been true. It began with my attending the support group. I got so much strength from those other women. Somehow we were making it. These women are forever in my heart and in what helps me get through the sadness now. ALL of the team has been part of what helped us get through the worst of the treatments and the end of my husband’s life. You guys helped us to be able to live, really live, in the worst of times. God’s blessed us with giving us each the strength to go forward, and to continue to live. Some days I don’t think I’ll make it, and then I remember – it’s the one day I have to do something with.
So, I look for what I give, and what I receive, and somehow I go forward. The Supportive Care Team did more than just support – you guys gave me tools that I still draw on. Please continue your good work. So many families need what you guys give.”