The Changing Role of Caregiver Advocates When Caregiving Ends

Bereaved parents of rare disease children must confront not only grief but changes to large parts of our identity. The role of caregiver was likely a primary if not all encompassing identity for most of us. I’ve been thinking of the phrase “caregiver for life”. It’s a useful distinction that speaks to our children’s chronic and continuing needs. But the “for life” description leaves open the question whose life? For the caregiver’s life in the case of children who will outlive their parents this has many complicated considerations. And for those parents who outlive their child the timeline “for life” does not refer to their own lifespan but the child’s.

Daniel DeFabio

This sometimes shakes my own sense of identity. I consider myself an advocate for Menkes Disease and my son Lucas specifically but also for rare diseases in general. Before Lucas passed it was clear I was both a caregiver and an advocate. Now that he is gone I need to rethink that. Am I a former caregiver? Someone with emeritus status? At least one rare parent friend calls me an OG.

And why should that matter? Yet I feel it. A few years ago, my friends and fellow rare parents and I shared the experiences with all the similar daily struggles we had in common.  For them these challenges are still present tense and daily. For me they are no longer urgent, or emergent or threats. They are past tense and slipping into memory.

Even though I know my experience is still relevant and useful to those newer to this caregiving path, I wonder how long it might be before I’m out of touch, before how we did it in “my day” is antiquated. The world changes, technology changes. I can read up on gene therapy but I didn’t live with it as a realistic, reachable goal in my son’s lifetime. I can still recall daily struggles with g-tube feeds, catheters and adaptive equipment, but the pressing weight of that is now gone for me. It now has only the weight of a fading memory.

I asked some fellow bereaved parent advocates how they think about their identity once the caregiver role is behind them.

Reena Kelly

I have struggled with my own identity as a caregiver since our Zeke went to heaven. As long as he was here, I was his fiercest cheerleader and advocate. Now that he is no longer here, I don’t quite know which “bucket” I fit best into – am I still a caregiver even though my son is no longer here? Do I have anything meaningful to contribute to other parents navigating the “rare” caregiving life, when my own journey was so short and I no longer am in that space? Am I going to be able to share my experiences without adding in the weight of Zeke’s loss because other parents may not want to contend with the concept of loss while caregiving? All of these feel simultaneously like inane and weighty questions that I constantly ask myself. As Daniel mentioned, the sounds and beeps of the feeding machine and Zeke’s NIPPV machines still bring back memories of the long hours and days watching Zeke bravely fight his battle with LMNA-related CMD, but today those are not as nearly as triggering. They still bring a rush of feelings, but the feelings are not as painful as they used to be. In some ways, I feel sad that the pain isn’t as acute – I mean, if I am not hurting deeply then am I even grieving Zeke’s loss as his mom? In other ways, I am glad that I can remember Zeke and my time caring for him without completely breaking down. A lot of my thoughts about my identity surrounding my new “normal” as a former caregiver are jumbled, much like my life in general. I don’t know how these may/may not change with time, but whether I want to find out or not, I know it is waiting for me on this journey.

Jessica Fein

I don’t think I realized how much every single aspect of my life was defined by being a caregiver. Logistically, spiritually, physically, and relationally, caregiving was the epicenter of how I moved through the world. I liken it to standing up close to a George Seurat painting, where you can see all the individual dots, but you can’t make out that what you’re looking at is a canoe or a field of flowers or a marketplace until you back way up. When I was in the midst of caregiving for my daughter, I never backed up. 

Then, what felt like suddenly, Dalia died, and I was no longer an active caregiver of a child with a rare disease. But if not that, then who was I? Of course I was still a mother to my other children and a wife and a professional, but even those roles felt so different when they were no longer bumped to the sidelines. 

I don’t think of myself as an ex-caregiver. To me, an “ex” suggests something that is no longer core to your being. Caring for Dalia will always be intrinsically woven into everything I do, so even though I’m not actively managing care I still think of caregiving as essential to who I am. 

Cheryl Lynn Townsin

After Lexi’s passing, my role as a caregiver transformed from providing her with physical comfort to ensuring that her legacy continues to make a profound impact. When Lexi died, I could hardly think about advocating for Blau syndrome, but Lexi’s brother, Felix, had other plans. Upon hearing about his sister’s sudden and unexpected death, he became fiercely committed to finding a cure for Blau.  

During Lexi’s life, my identity was torn between being a caregiver, an advocate, and a parent. More than anything, I just wanted to be her mom, but the advocacy consumed much of our precious time together. The balance was impossible – trying to fund research for an effective treatment, caregiving for our child and working overtime to fund her medical expenses. After Lexi’s unexpected passing, the void was not only from losing her but also from losing my role as her caregiver, leaving me with a profound sense of loss and another shift in my identity.

We were consumed by Blau syndrome and rare disease for most of Lexi’s life, and we focused solely on rare disease advocacy in the years following her death. However, for our own healing, we needed to make room for the things we loved. Lexi’s life was much more than her rare disease, and we strive to honor all she cared about. As we navigate birthdays, anniversaries, and other milestones without Lexi’s physical presence, we channel our grief into projects that continue her legacy.

Despite the excruciating reality that Lexi won’t benefit from our advocacy efforts, I continue to feel her presence guiding me. Lexi set us on this path of advocacy, and I am certain she will guide us until we are reunited. We often joke that she kept us busy and is still bossing us around. On impossible days, we hear Lexi’s sweet voice reminding us, ‘We will not stop until we find a cure.’ This promise fuels our relentless pursuit and keeps her spirit alive in our advocacy.

Daniel DeFabio, “caregiver for life” and Director of Community Engagement for Global Genes, asked fellow “caregivers for life” for their experiences of being advocates after losing loved ones.