Advertise on podcast: The MS Caregiver Conundrum

Paid family leave, access to care, financial support, prescription drug costs, and tax credits for home modifications are just some of the public policy issues that affect MS caregivers every day. When it comes to advocacy, the National Alliance for Caregiving is a leader in conducting policy analysis and tracking legislation dealing with family caregiving issues. Joining me to discuss the impact of public policy on family caregivers and to highlight some of the public policy wins and some of the public policy challenges that affect family caregivers is C. Grace Whiting, the President and CEO of the National Alliance for Caregiving.

Embracing Carers is EMD Serono's global initiative to increase awareness, discussion, and action about the frequently overlooked needs of unpaid family caregivers. Collaborating with leading caregiver support organizations around the world, EMD Serono has published detailed research on the unmet needs of family caregivers, produced a documentary film to raise awareness of the role that MS caregivers play, and has gone so far as to include the voice of caregivers in the drug development process.   Joining me to discuss why raising awareness of the role that unpaid family caregivers play is a strategic decision that EMD Serono has made, and to share some of their eye-opening research highlighting the unmet needs of family caregivers is Lynn Taylor, Senior Vice-President and Head of Global Healthcare Government & Public Affairs at EMD Serono.

Caregiving can sometimes feel overwhelming. And being able to turn to someone who understands the stresses and strains that can affect an MS caregiver and who knows how to access the kinds of resources and support programs that can get you moving forward again may be a perfect definition of the National MS Society's MS Navigator program. Joining me to talk about this extraordinary service that many MS caregivers may not even be aware of are MS Navigators David LaRue and Suzanne Bachman.

Here's what the Mayo Clinic has to say about the burden of caregiving: It is natural to feel angry, frustrated, exhausted, alone or sad. Caregiver stress — the emotional and physical stress of caregiving — is common. People who experience caregiver stress can be vulnerable to changes in their own health. Learning how to avoid or defuse caregiver stress before it becomes a threat to your own well-being is a caregiving skill that often gets overlooked. Clinical psychologist Dr. Rosalind Kalb joins us for a deep dive into some of those very real aspects of being an MS caregiver that aren't discussed often enough.

Being an adult child managing the care of a parent who used to manage you can be tricky. When the roles of patient and caregiver don't match up well with traditional parent-child roles, the landscape can quickly become an emotional minefield.   But caregivers can become experts at navigating those minefields and defusing potential tensions. Hilary Itoh's mother, Nancy, was diagnosed with MS in 1980, and Hilary took on her first caregiving responsibilities at the age of 9. Since 2010, Hillary's mom has lived under the same roof with Hilary, Hilary's husband, Gene, and their three children. Dawnia Baynes' father, Gary, is living with progressive MS in Pittsburgh, Pennsylvania and Dawnia lives 2,500 miles away in Southern California. But Dawnia doesn't let distance get in the way of her very active role as her father's caregiver. And, by the way, Dawnia is also living with MS.

Being a parent already implies that there will be caregiving responsibilities. Parents know that they'll be facing any number of colds, cases of the flu, assorted bee stings and mosquito bites, and maybe even the aftercare associated with a tonsillectomy, sprained ankle, or broken arm. But they're probably not thinking of the uncertainty and unpredictability associated with MS. When pediatric MS strikes, caregiving responsibilities, along with everything else, seem to change.     Melissa Hadsell's son, Richie, was diagnosed with MS just last year when he was 12. Rebecca Darlow's daughter, Becca, was diagnosed with MS 8 years ago, at the age of 9. Melissa and Rebecca are parents who are also MS caregivers.   It's time to start untangling the MS Caregiver Conundrum!

When your spouse or partner is the person who's living with MS, you have your role as their caregiver but you also have your role as their significant other -- their partner in the relationship. And for a lot of caregivers, trying to balance those two roles can be challenging. I'm joined on today's episode by a couple who has not only met that particular challenge, but they've overcome it in amazing fashion. Jennifer Digmann was diagnosed with progressive MS in 1997. Her husband, Dan, was diagnosed with relapsing-remitting MS in 2000. And they are each the other's caregiver. It's time to start untangling the MS Caregiver Conundrum!

I've always said that being a caregiver is like getting a job that you've never applied for, aren't particularly well trained for, and, you quickly discover, the pay is pretty crummy, too. Welcome to The MS Caregiver Conundrum! Over the next 8 weekly episodes of this podcast series, you'll meet MS caregivers in all of the different caregiving configurations that you might find them in, including spouses, parents, partners, and children. We'll also talk with professionals about managing the emotional burden of being an MS caregiver, we'll tell you where to find support that's available to MS caregivers, and we'll even get into the public policy issues that are driving state and federal legislation designed to better support family caregivers. In our first episode, you'll meet author Kate Washington. Kate's book, Already Toast, Caregiving and Burnout in America, chronicles her experiences as a caregiver for her seriously ill husband while also revealing a broader picture of the often overlooked and undervalued role that unpaid family caregivers play. It's time to start untangling the MS Caregiver Conundrum!