Why did Community Hospice of Northeast Florida proudly sponsor JCCI’s Am I My Parents’ Keeper? series? They know how important it is to take care of your loved one and you.
Susan Ponder-Stansel, Executive Director of Community Hospice of Northeast Florida, gave us a brief overview of why elder care and issues in caregiving matter to the organization, why they are not only acutely interested in but also very proud to be part of a series exploring ways to make everyone’s quality of life better through the end-of-life journey.
Community Hospice was founded in 1978 by a group of volunteer caregivers who were trying to support someone dying their church who decided to come together as a team, so it’s in their DNA. But as an organization, beyond just being care providers, they also understand that in order to provide care to those who are facing the end of life, we all have to be part of the community. They have a general interest in the quality of life of families and those who care for them.
As an organization, Community Hospice has learned about caregiving, grief, pain control, and other topics. They want to share what they’ve gained and benefit those who are in care and are caring for loved ones.
It may help to know that Hopsice is paid for by Medicare. Even in Duval County—which is a younger demographic—80% of the revenue is from Medicare, so they are clearly dealing with aging issues. Hospice history includes a pilot program in the 1970’s with elderly cancer patients, but hospice care is now a large part of our health care system, predicated on the belief and expectation that people will have caregivers.
When people think about what hospice care looks like, they often picture facilities, which are available throughout the community, but they are for acute care, for very brief stays. The vast majority of patients—over 95%--are dying at home, wherever that home may be, and their caregivers may be related to them. They may not. They may just be people who are nursing home suitemates or neighbors or friends, or coworkers, whatever that patient defines as part of their family. Community Hospice is obligated under Medicare conditions to take care of not just the patient but also their family, and that includes the caregiving circle.
So JCCI’s series is a big deal for Community Hospice, who is constantly dealing with caregiver issues: the coping of the caregiver, the adequacy of the caregiver, even the hours available. Toula Wootan mentioned that the grief, the exhaustion, and the anxiety—all of those things are very much addressed by the Community Hospice team.
Our region—even if no one else moves here—is going to become older. Beyond Hospice, beyond even what we may understand now, it may shock you to learn that, beginning in January of 2011, and every single day for the next 19 years, 10,000 people per day are turning 65. Think about that.
Right now there are 100,000 identified caregivers in our region, approximately 10% of our population, giving some sort of care or, as they euphemistically call it in the aging network, operating single family nursing homes.
It’s a big deal.
Susan explained that the average caregiver is a woman, usually, 49-50 years old, employed at least full or part time, and that person may have adult children back at home. The family may be raising grandchildren. The caregiver may be trying to keep a job. So in terms of what this series means to us, as a society and particularly to our region, it’s a workplace issue. It is about people having to leave jobs because they can’t manage both. It’s about disruption to employment and future social security and future earnings. It’s about the toll on our healthcare system, because a lot of the “frequent flyers” that you may have heard about—who show up at emergency departments—have to do with caregiver exhaustion, where they just can’t take it another day, particularly those caring for elders with dementia and congestive heart failure and some of the chronic diseases that we know are already in our population right now.
We must find better ways to help people provide support informally because clearly, if the formal system had to pay for the care that’s going on right now, there aren’t enough dollars being printed to provide what families and faith groups and volunteers and others are already doing for caregiving. So, this is probably one of the most important topics. It’s one that not one of us can say does not concern us. Whether you’re dealing with an older person or not, if you’re operating a business, if you’re depending on people to have money to spend, if you are in any way dealing with mental or physical health, transportation, neighborhoods, you’re dealing with caregiving issues, and they often are hidden in plain sight.
We have a wonderful Caregiver Coalition that includes not only Community Hospice but Elder Source, the Mayo Clinic Memory Disorders, Aging True, the Alzheimers Association, and the City of Jacksonville Adult Services Division, who’ve come together to look at this issue, but one of the things that we know is that once you bring awareness of the need, there is also opportunity, so Community Hospice is happy to support JCCI’s work in doing so.
The focus is on asset-based planning. Often what needs to be done to support caregivers isn’t necessarily complex and isn’t necessarily expensive, but we may possess tools that continue to allow people to provide care that our agencies and government could not afford to, and then enhance their experience and make sure that it’s something that they can live through and still come out on the other end with some mental, financial, and physical health.
Community Hospice commends JCCI for taking this on. It is one of those issues that is truly undergirding so much of what we’re seeing in health care reform and health care issues and mental health issues as well. As a community, once you start to become aware, then you can find solutions that really do work, so they are honored to be a part of this series, noting that it is probably one of the most impactful things we can do.
Please visit the Am I My Parents' Keeper? page for audio recordings of each session and links to resources to help you start your family's--or your community group's--conversations, make decisions, and embark on a quality care journey.