Caregiver: A Love Story, some impressions

By Erin E. Kent, PhD

10/21/2021

I just had the privilege of viewing the short documentary Caregiver: A Love Story, a film about Bambi, who is diagnosed with metastatic melanoma, and her partner Rick, who serves as her caregiver. The film was intended to center hospice and end-of-life care, but the filmmakers, Dr. Jessica Zitter and Kevin Gordon, decided as they were making the film, that the real focus of the story was about caregiving.

The film is as beautiful as it is heartbreaking, and in the 24 or so minutes that it plays, Bambi, Rick, and their relationship become real and familiar and recognizable. The film has an effective but light touch in the facts it displays about caregiving. We see love, sorrow, hope, and burnout. We recognize both urgency and mundanity of the experience. And in spite of the strain and the examples of missed opportunities for small but meaningful systems-based supports, we see deep purpose and deep human connection. Caregiving calls.

I was able to watch the screening, hosted by the AARP, through my membership in the North Carolina Serious Illness Coalition. We had a rich discussion to follow that covered the very topics that the RAISE Family Caregiving report’s recommendations to Congress includes – the need for system-wide supports and better access, public awareness campaigns on the invaluable role of caregivers, integration of caregivers into care delivery, workplace and financial assistance, and the call for more and more research. Given our membership and charge in the Coalition, we all know the importance of these recommendations, and yet the film we watched brought more than just tears – it showed us the why.

As an outcomes researcher and epidemiologist, I generate data, I synthesize evidence, I write and contribute to peer-reviewed literature. This is the role I have, the part I play. However, my favorite expression these days is “Both… and.” So, data. But also, story. Data + Story. We need both for the whole picture, to convince those in power and with influence that care cannot wait any longer.

Here’s some data: our caregiver ratios are dropping, thanks to population aging and changing demographics. We have about 7 caregivers to every 1 care recipient ages 80 years+ in the U.S. right now. That is projected to fall to 3 to 1 in 2050. Less than half of the current supply of caregivers will be around when myself and my peers need care.

Humans are wired to engage, to belong, to care… to embrace the purpose of caring for a partner with serious illness. To connect with that purpose. How beautiful that is. What if society were designed around that experience? What if systems were in place to buffer the primary caregivers, to provide them some respite, to lighten the load of task provision, to ensure financial protections? And not just at end-of-life, but for the many caregiving situations that are chronic, ongoing, and uncertain? It is useful for me to think of the onion model of grief here, but apply it across caregiving situations, not just grief. Could we have such a system, that truly values the invaluable?

That honors Rick as he loves and tends his Bambi at the end of her life?

Let us work toward that alternate future.