Special guest, Liz Naylor, mother of four children with myotonic muscular dystrophy and Founding Executive Director of My-Vida, joins Allison and Justin to talk about what caregiving looks like from the parent perspective.
As caregivers we are attuned to the needs and moods of our loved ones and spend our days showing them care and compassion. However, we rarely transfer those same skills to ourselves. In this episode, Allison and Justin talk about simple ways we can start to implement self compassion when it comes to our thoughts, moods, and mistakes.
The celebration of Justin’s 40th birthday led him to reflect on where he thought he would be at this time in his life versus where he is. In this episode, he and Allison talk about how becoming caregivers changed their trajectories, how they are trying to claim the role without losing themselves in it, and how to remember and focus on who they are, not just what they do.
As chronic illness caregivers, Justin and Allison are used to experiencing daily challenges, but in the past weeks they’ve both found themselves in unexpected medical situations beyond their norm.
Allison and Justin describe the unique challenges that arise when the person you’re caring for has an invisible illness.
Allison and Justin talk about the difficult reality of being a caregiver for someone with a lifelong chronic illness. They discuss how things felt at the beginning, how they keep going, as well as how people can better support those in these long term caregiving situations.
Special guest, Kyle Woody, Executive Director of Jack’s Caregiver Coalition, and Justin talk about the unique challenges faced by men who are caregivers. Kyle also shares the free resources provided by Jack’s to male and female caregivers alike.
Justin and Allison talk about how it feels when caregivers are told to find meaning in their hardships and to celebrate and seek well-being through their roles. Spoiler Alert: It doesn’t feel good. They discuss what does feel supportive and what kind of spaces they would like to see more of in the caregiving community.
Justin and Allison both married their spouses years before either of them became ill, but have now spent more years of their marriages as caregivers than not. In this episode, they talk about how married life, roles, and relationships have changed in the time since the diagnoses, as well as what it feels like looking towards the futures that are not what they imagined on their wedding days.
Justin and Allison talk about the pressure of being the person who sees the complete picture of their spouse’s health and feeling overwhelmed because they can’t just rely on the doctors, but need to be their own medical researchers.