Marie fields calls from the 130 cases she manages on any given day. These people are callers to First Call for Help of Broward who need help in their caregiving roles. They reach out to 211 Broward's Caregiving Navigation Care Coordination Services. The AARP/UWW Caregiver Pilot was launched in November 2020, mobilizing the AARP Caregiver team's expertise with the United Way's and 211's understanding of local resources. Their mission, to provide caregivers with much-needed support to improve self-care and combat burnout, is critical. According to Marie, many callers can't access the available resources. Sometimes, the resources have run out. Sometimes, they need to talk. Her callers are always overwhelmed by the responsibility of navigating the labyrinth of services their dependents rely on. They want to do their best but don't know how.
"I find myself doing a lot of advocacy calls," Marie says. She explains that an advocacy call is a three-way conversation between herself, the caregiver, and the service provider. She supports her client through the process of insurance claims, benefits, or any of the other complex issues that caregivers must navigate on behalf of their dependents. According to a report from AARP and the National Alliance for Caregiving (NAC), more than 1 in 5 adults — 53 million adult Americans — are now unpaid family caregivers. They care for older parents, spouses, and loved ones, providing over $470 billion in unpaid care annually. Those numbers are increasing as the US population continues to age and live longer with complex and chronic conditions. Caregivers are often stressed and looking for help to identify available resources where they live.
Marie's most recent call walked a mother of two adult sons with developmental issues, one of whom is seriously medically ill - through an insurance issue. "When we started off, she was really tough, but I know it was because she felt alone and that there was no one to help her. We called together. A lot of the time I am the one who speaks because they can't put the pieces together."
Health insurance calls are one of the most common types that Marie makes. "In South Florida, we have many people who do not have health insurance." The reasons for this vary. Some have moved to the United States without going through legitimate channels. Others cannot afford insurance coverage. Still, others came on vacation and fell seriously ill. In one instance, a woman from South America who came to visit her family collapsed due to brain cancer and was hospitalized for two months. Marie was trying to help her daughter negotiate the staggering bill for an air ambulance back home.
In some cases, though, all Marie can do is recommend hospice care. There are those who get lucky and find a charitable service. But mostly, when families are facing the trauma of losing a loved one, it isn't easy to comfort them when their experience has been reduced to dollars and cents. It's Marie's job to show them the way.
In a 10-hour day, Marie spends at least 6 hours serving the advocacy function, making calls, and helping caregivers navigate the resources available to them. But as the Director of Internships and Special Projects, she must also make time to function as a grant writer and administrator. The 211-Broward Caregiver Navigation Service team also offers care coordination, resource referrals, help to develop a caregiving plan and support follow-ups.
Their other important role is providing support. Marie says her first task is to acknowledge the stresses that caregivers face. Many of them often need to tell someone about their struggle. One caregiver who used the service captured her sense of isolation and praised 211-Broward. "I didn't even feel that way with my own family, the way that you were concerned about me. It was a beautiful experience to know that somebody cares and that somebody wants to know how it was going to be. You were interested in knowing how I was feeling."
It is especially hard for the caregivers of those living with dementia who are unable to leave the house. "One woman was shut up with her husband for almost two years," Marie says. So, she offered the woman the only thing she could. She calls them 'bites,' or small pieces of self-care that allow them to get as close to their pre-caregiving lives as possible, that allow them to feel human. For the woman on the phone, that meant going outside and walking along the path between her home and the street.
Marie's 'bites' are only the beginning of the emotional support she gives to the clients on the other end of the phone. Apart from listening and suggesting small ways to care for themselves, she often has to refer them to mental health resources. Noting the high rate of suicide among caregivers, she says that advocacy calls are often as much about the caregiver as they are about the person receiving care. According to AARP, caregivers may experience grief, depression, anxiety, isolation, and exhaustion. 40% of caregivers say the role is highly stressful, and 21% report feeling alone. Despite their efforts to keep others healthy, caregivers often report experiencing sleep deprivation and skipping appointments and medications to prioritize others.
The scope and depth of the care Marie and First Call for Help of Broward offer are astonishing. Like other 211 interventions, they guide caregivers to the resources they need and support them through the complexity of accessing them. More impressive is the fact that Marie herself is a caregiver. As a mother, she spent part of the COVID-19 pandemic at home with her son. These days, she's providing caregiver support for her sister with physical and mental health concerns, who lives in a different state. Her own experience may be why she can sense where support is needed and why she is happy to answer their calls. "I've got a social worker's heart," she says, "but I also love mysteries. I love solving. A big part of it is just caring. Compassion, warmth, and empathy. I think being kind is really important."
So far, the AARP-211 collaboration has provided resources to identify and provide ongoing support to caregivers and expand community partnerships to grow the network of referrals and services their clients need. Through their efforts of enhanced navigation support, more than 260 caregivers have been connected over the past two years. If you would like to support the work that Marie and others do to help their communities thrive, reach out to your local United Way or 211 to find out more.