Many caregivers end up caring for not just one, but multiple family members, often concurrently. In this episode, Justin and Allison discuss how and why this happens, the impact this can have on caregivers, the boundaries that can be established, and the adaptations that can be made, as well as how supporters can help.
There are people in our lives who, because of biology or proximity, we would expect to show up for us in our times of need, and it can be especially painful when they don’t. In this episode, Justin and Allison talk about the grief and disappointment when people close to us don’t show up, but also the beauty when other, less expected connections, do.
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.
Susan Silk created "The Ring Theory" as a way to guide people who are supporting someone in a crisis. In this episode, Allison and Justin discuss how this model of "Comfort In, Dump Out" applies to caregiving.
Caregivers are often told they are “saints” or that people can’t imagine how they do what they do. While well-meaning, language like this can have a variety of negative effects. In this episode, Allison and Justin talk about how phrases like this land and what supporters can say instead.
Life is full for everyone, especially caregivers. In this episode, Justin and Allison talk about ways to eliminate, delegate, or simplify daily tasks.
Even in the hardest of times, caregivers often shoulder the weight of it all instead of asking for support. In this episode, Justin and Allison talk about what initially pushed them to reach out for help, why doing so can feel so difficult, and logistically how they made it work.
When you are part of a rare disease or chronic illness community, there is comfort in building relationships with others whose lives look like your own, those who understand the terminology and the reality of your daily life. However, those important friendships can lead to unhelpful comparisons or even heartache as friends are lost to the disease. Listen in as Allison and Justin describe the ups and downs they’ve experienced in friendships with fellow caregivers and with those living with chronic and serious illnesses.
Allison and Justin talk about how friends and family have shown up to support them throughout their caregiving journey. They offer advice to supporters for ways to provide support and give some suggestions to those caregivers who are lacking support.