Episodes
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With local and national elections just weeks away, we spoke with Nicole Jorwic, Chief of Campaigns and Advocacy for Caring Across Generations, a nonpartisan nonprofit working to build real, helpful, thoughtful care systems by transforming cultural norms and narratives about aging, disability and care, fighting for policy change at every level, and uniting a powerful coalition across the millions of us who are touched by care. Nicole shares the current state of care, what’s at stake in the upcoming elections, and what caregivers and their supporters can do to make a difference.
Join us for an online support group related to this episode on Wednesday, September 25 from 6:00-7:15pm CT. Sign up here.
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Caring Across Generations
Care Voter Guide
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Two-thirds of family caregivers work full or part time in addition to their caregiving role. In this episode, we speak with Jessica C. Guthrie, caregiver for mother, about what it looks like when careers and caregiving collide.
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https://www.jessicacguthrie.com/
https://www.instagram.com/careercaregivingcollide/
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Episodes manquant?
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Aging, illness, and injuries can cause people to lose some of their freedom and autonomy. As caregivers, how do we help our loved ones maintain that autonomy and what does that look like when their decisions or actions impact us or may not be taking the whole picture into consideration? In this episode, Justin and Allison talk about ways to approach these complex situations.
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We will all experience grief in our lives, but there are unique and extra layers of emotions often felt by the person who had been the caregiver for the one who has passed. In this episode, we talk with Aisha Adkins, caregiver for her parents, about the loss of her mother and Eric Schlueter, caregiver for his wife, about his experience with grief since her passing.
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Advocacy is an enormous part of the role of the caregiver. We advocate on behalf of our loved ones in medical spaces, with friends and family, in the community, and even directly with our person. In this episode, Allison and Justin discuss these aspects of advocacy, how personality traits impact our comfort with these tasks, and how supporters can help.
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Caregivers and their loved ones frequently have to revisit the same buildings and rooms in which they previously experienced traumatizing procedures, treatments, or news. In this episode, Justin and Allison share what this has been like for them and how they handle going back time after time.
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All of the tasks of being a caregiver can take a toll, causing physical, emotional, and mental fatigue. In an unfortunate bit of irony, that fatigue can make the role even more challenging. In this episode, Allison and Justin talk about how it feels to be in an intense season of caregiving, the toll it takes, and the guilt they experience when they feel they aren’t at their best.
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Justin’s wife received unexpected test results that led down the path of scans, an appointment with an oncologist and a plan for surgery. In this episode, Justin shares what they’ve been through and what lies ahead.
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Caregivers can experience frequent moments of disappointment, from plans that need to be canceled to treatments that don’t work to people not showing up when we need them most. In this episode, Allison and Justin talk about the types of disappointment they have faced, ways disappointment can be processed, and what we can do to manage our expectations.
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Caregivers and their families frequently find that well-meaning friends, family, and medical staff show up in ways that do not line up with the needs, wishes, and values of the patient. In these cases, it’s important for the caregiver to establish and enforce boundaries, both for their loved one and for themself, which can be challenging on a number of levels. In this episode, Justin and Allison talk about how they feel about setting boundaries, different scenarios in which it may be important to do so, and ways that supporters can help.
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Caregiving can have an enormous impact on the mental and emotional health of a caregiver and therapy is one important tool that can help. However, there are barriers that may cause caregivers to hesitate, despite the benefits. In this episode, Allison and Justin share their own experiences with therapy, describe what may stand in the way of a caregiver accessing therapy, and list some resources that can help.
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Maybe You Should Talk to Someone - Lori Gottlieb
Psychology Today
National Alliance on Mental Illness
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Some caregivers go through phases in which their loved one's health is a bit more stable. These seasons can leave caregivers wondering if they can still claim that title and can allow some space for reflection. In this episode, Justin talks about what it's been like to be in a quieter season these past few months.
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Making plans can feel risky and complex for caregivers, as they find themselves creating contingency plans for all that might go awry before, during, and after the event. All this can lead caregivers to play it safe, deciding that staying home is easier - but at what cost? In this episode, Justin and Allison talk about which way they tend to tip, and the consequences that follow.
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For people living with an illness or injury, appointments with medical professionals can feel like important moments to learn more about the prognosis, get access to new treatments, and share concerns about new symptoms. But what happens when those appointments don’t go well? How does that impact caregivers and what, if anything, is their role in following up? In this episode, Allison and Justin talk about their experiences with unpleasant appointments for their spouses, how that felt, and what they did about it.
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Most caregivers come into the role without any medical background and yet find themselves performing high stakes tasks and making countless decisions. In this episode, Justin and Allison talk about times they did receive training, if it was effective, and where the gaps are in the system.
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https://www.embracingcarers.com/
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For a caregiver, the experience of a loved one being hospitalized can involve countless moments of decision-making, symptom tracking, and advocating all while being away from home and while bearing witness to our person’s suffering. Allison recently experienced all of this and more when her husband spent multiple days in the Emergency Room and hospital. In this episode, she shares with Justin what went into the before, during, and after that hospital stay.
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Stories of caregiving are becoming more prevalent in both the news and in the entertainment industry. In this episode, Justin and Allison weigh in about how accurately they feel it’s being portrayed and the impact of this type of representation for both caregivers and their supporters.
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NYTimes: "I Wish I Had Known That No One Was Going To Help Me"
NYTimes: "The Quiet Rage of Caregivers"
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The hustle and bustle of the holiday season can be especially challenging for caregivers who are already stretched thin and short on time, energy, and finances. In this episode, Allison and Justin discuss the factors that can make this time of year feel particularly hard, what we can do to make it through, and how supporters can help.
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In Sickness Episode 55: Grieving at the Holidays
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When we become caregivers, any illusion we had of being in control in our lives can be lost. We are often unable to control disease progression, our loved one’s pain, and broken systems, just to name a few. This lack of control can make some people cling more tightly to what they have left and can make others let go altogether. In this episode, Justin and Allison talk about how they have experienced this lack of control and how supporters can help.
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