CAREGIVER: A Love Story: How to care for an ill or dying family member while taking care of yourself
Caregiver: A Love Story Interview with Jessica Zitter by Erin DelGrosso
Check out this special conversation with Dr. Jessica Zitter, a nationally respected leader in Critical Care and Palliative Care medicine and the director of the poignant documentary CAREGIVER: A Love Story. Dr. Zitter and GOOD DOCS intern Erin DelGrosso discuss our current healthcare system, and the best way to navigate the enormous challenges of caring for a dying family member while still taking care of yourself.
What is Caregiver: A Love Story about?
Caregiver: A Love Story tells the story of a man named Rick Tash who cared for his wife, Bambi, at home over the last nine weeks of her life. He had the support of hospice, which did a wonderful job, but it wasn't enough. The responsibilities that caregivers have in caring for seriously ill patients and end-of-life patients are profound, and it saps them emotionally, physically, medically, and financially. The problem is that our society does not have the infrastructure and benefits to support family caregivers. You go into the film thinking it’s about one thing: celebrating coming home, facing death, being brave, and making the last weeks or months as good as they can be. What you see when you watch the film is an unexpected turn of events that focus not so much on Bambi, the wife, but on the experience that her husband had.
Why is family caregiver burden a growing issue?
The film has come out at a really important time in our society, where demographics are shifting, our baby boomers are aging, and families are dispersing and getting smaller. The pressure on individual family caregivers is rising to a level that is just simply not manageable. Our society isn't set up to support them with the resources that they need to thrive. We're going to have to recalibrate our society to catch up with this rising public health crisis or we're all going to be impacted. The number of family caregivers has risen drastically from 44 million to 53 million in the past five years. At the beginning of the pandemic, there was a pressure cooker on family caregivers. You couldn't have people in your house anymore and your elders couldn't go out to the adult day programs or receive other types of support that are out in the community. This resulted in caregivers sitting alone in their houses with care recipients and needing to quit their jobs, even more than before the pandemic. It’s bringing awareness to a public health crisis that has been rising quietly and invisibly in the background and now has just exploded. This is the moment for this film to be watched.
What was your reason for making this film and how did you use your expertise to help you tell this story?
I was making a film about something completely different. I was making a film about how to die well at home. I thought it was a simple thing, just check the box to call Hospice when you feel like you're coming to the end, and everything will be taken care of. This family had such a good and brave attitude about death, so that’s what I thought this film would be about. What I learned only after the film had been shot was that it was really about Rick. He was the character that we needed to profile in this film, not Bambi, who I originally thought was the primary character. My expertise was ironic because I've been a palliative care doctor for a long time, and you think of palliative care doctors as doctors that are so sensitive to their patients’ needs. It’s true- I was so sensitive to my patients’ needs- but I was completely insensitive to the caregivers of my patients. As I’m showing this film to other doctors, medical trainees, and nurses, I’m realizing that all of us in the hospital are woefully unaware of this crisis. The irony of your question is that I gained expertise from making this film and we all have a responsibility to have expertise about family caregiver burden when we're taking care of patients.
What else did you learn while filming?
I learned that making a documentary film is very different from creating a fictional story, writing an essay, or a fictional film project. This process took me to a completely different place to where I thought I was going. When you’re telling a story that you are designing, you are teaching other people. Learning from the work that you're creating is a really interesting experience. I realized I hadn't been paying attention to family caregivers in my practice and that set me on this new mission to learn as much as I can about this topic of family caregiver burden and to share it with my fellow physicians and anyone else who will listen.
Do you have any advice for current caregivers who are struggling?
This is not a marathon you can run alone. Although there needs to be more, there are professional resources and social services to help you, such as adult day programs, Meals on Wheels, and transportation support. There is also home-grown help, which can be very beneficial to anyone, whether you’re on a budget or unable to receive financial support for professional help. Who in your community (neighbors, friends, people from your religious community) can help take some of those delegable tasks off your plate? Having help to do menial tasks (grocery shopping, laundry, etc.) can restore caregivers’ energy reserves. My last piece of advice for family caregivers is to find small moments of self-care. For example, 10 minutes of meditating, having a glass of wine, sitting in a bath, or doing a little bit of stretching or yoga. Asking for help and doing self-care will help caregivers who are so exhausted to just have a little more energy to deal with this incredibly difficult task.
What can be changed to give family caregivers the full support they need?
Four systems impact the typical family caregiver: the healthcare system, the workplace, the community, and social agencies. In all these systems, there must be an honoring of the experience of being a caregiver and a normalizing of their distress and overwhelm, so that they don't feel guilty or afraid to be seen as ungrateful. That is the first element: awareness building and emotional support for their experience.
Identifying, preparing, and supporting these caregivers in the hospital environment is very important. That’s where I come from, and I was missing this incredibly huge element. A lot of the time, we send patients out of the hospital and we haven't identified the caregiver, given them any kind of special training, or given them any preparation emotionally. We need to prepare people, honestly, for what it means to be a caregiver. If you don't prepare people, it ends up being a huge shock to families when they get home. If they were given proper advice and resources, they would be much more resilient. However, the caregivers are shocked, exhausted, and overwhelmed, and then they become the patient. This is a pattern that we see a lot.
In the workplace, there are many things that forward-thinking employers are starting to do. However, it is still culturally unacceptable to complain about one’s burdens and ask for support as a caregiver. A caregiver-friendly workplace could look like creating flexible schedules so people can come in at hours that work better for them, paying for adult day programs, or allowing caregivers to change their work duties. Employers are losing billions of dollars every year in turnover because caregivers are getting sick, so it's in everybody's interest to support caregivers.
Rick and Bambi had a well-meaning community around them, and many loving and kind people would bring by casseroles. But you know what happened? Rick's fridge was so stuffed with casseroles, but they weren’t necessarily things that their granddaughter, Maya, would eat, so it wasn’t always helpful. Communities could create support committees that identify caregivers and see what kinds of things they need help with. What Rick might want, more than casseroles and flowers, is for someone to clean out his fridge, do the laundry, or stay with Bambi while he goes to the gym. It requires curiosity and tailoring of what you do for someone.
Lastly, we need more resources, more money flowing in to support family caregivers, and social workers to help coordinate plans for family caregivers so they can access assistance that’s tailored to their specific situation. Hospice and respite care are options for some care recipients and those actively dying, but we need more resources. The bills President Biden has been proposing to support caregivers include giving social security payments to caregivers even if they are unemployed, because they are working, and their work should not go unpaid.
How does having study guides and curriculum affect the audience’s experience with the film?
We created the curriculum and film for medical students and residents, and we’ve won several awards with these programs. It’s been very rewarding to witness people make this important connection of giving more attention to caregivers. There is always at least one person who tells me, “I'm thinking about a patient I saw last week. I was so excited that they were getting better, but I wasn't thinking about the experience of their caregivers. Now that I look back on it, I feel so sad for not even talking to them.” We've created some short curricula for medical residents and medical students. The one for medical residents just won an award at the National Meeting for the American College of Physicians and the medical student program was just accepted into CLIC – The Consortium of Longitudinal Integrated Clerkships. First, they watch the film, then we have 15 minutes of didactics, followed by a 15-minute processing time with the students. The film has great potential to raise awareness in the healthcare community. A short documentary, if it is powerful and character-driven, is an emotional priming tool, which is better than any lecture or dataset you could ever ask for. You’re with this incredible couple, right at the bedside with them, and you're moved to help change the situation. You're moved to learn about something that you hadn't even thought about before. We are also starting to create a workshop for Hospice staff to discuss family caregiver burden. We want to support Hospice in all that they do while raising awareness for this issue. The other curriculum is a program for family caregivers so that they can watch the film, talk about these issues in a supportive environment, and then give them a few tools that they can take away with them. Changing behavior starts with the heart and that's what Caregiver: A Love Story does.
There's a very powerful scene with Bambi and the Rabbi. How do cultural sensitivity and faith play a role in end-of-life care?
Most people are spiritual beings or are affiliated with a religion. We can't deliver good care and good support without attending to the spirit. Both the care recipient and the caregiver usually want their care teams to address their spirituality, existential thoughts, and God or other beliefs. We can’t think of hospitals or Hospice as being scientific and body-oriented. It's got to be about spirituality and address the inner spirit of patients, otherwise, it's just not a therapeutic or empowering experience for caregivers or the care recipients.
Do you want to add anything else about yourself or the film?
We started a production company called Jessica Zitter Media. CAREGIVER: A Love Story is the first film to be produced and we have several more in the hopper. We believe that all these films are going to be tools to improve humanism and care around the experience of being seriously ill in America. That’s the goal of Jessica Zitter Media. We're excited to be reaching out to all the communities that can benefit from learning about these types of issues and the many different subspecialties in the healthcare field, like nursing, chaplaincy, social work, geriatrics, psychiatry, and family practice. I just hope that we can get Caregiver: A Love Story out to as many of them as possible.