Justin and Allison both care not only for their spouses, but also pets in their homes. In this episode, they talk about the process of deciding to add pets to their families and the ups and downs they’ve experienced since, specifically related to their caregiving role.
Jessica Kim was the primary caregiver for her mother with pancreatic cancer and later her father with congestive heart failure, both of whom lived their final years in her home. In this conversation, Jessica shares how these two caregiving scenarios impacted her life, family, and home, how she managed her relationship with her siblings throughout, and how this role inspired her to create ianacare.
The first line of the “I’m Part of the Story” song written by Priscilla Momah for The Negative Space “I’m supposed to be the strong one that rises up when the storm comes,” inspired this conversation in which Justin and Allison talk about how caregivers commonly feel or are told that they need to be strong.
Priscilla Momah is a soul-nourishing song weaver who supports healing and community through the power of sound and music. In this episode, she talks with Justin and Allison about how music and sound can support caregivers and those they are caring for.
In this episode, Allison and Justin discuss what their lives may have looked like if their partners had not ever gotten sick, the good things that have come from being on this path, and the parts they would never have chosen to experience.
Becoming a caregiver can flip life on its head, upending so much of what we thought we knew and could count on. In this episode, Justin and Allison talk about all the ways caregiving has left them feeling dizzy and unmoored over the years and present some strategies they have found to be helpful.
A terrible car accident left Kelly Lang and her young daughter with Traumatic Brain Injuries (TBI). In this episode, she shares what happened and what it has been like parenting a child with a TBI while living with one herself.
The time, energy, and money that is involved with caregiving can often mean that hobbies a caregiver used to enjoy are no longer available to them. In this episode, Allison and Justin talk about hobbies they used to have, ones that are new since becoming caregivers, and ones that have been adapted. Also included are clips and quotes from caregivers of all kinds who submitted their thoughts on this topic.
Rodolfo Nieto cares for his wife, Clare, who has struggled with both Dissociative Identity Disorder and Pancreatitis. In this episode, he shares what it's like to care for both her mental and physical health needs, what that's meant for their relationship, and the impact it's had on his life.
Trauma-informed yoga therapist, Jacqueline Vlietstra talks with Justin and Allison about the basics of nervous system regulation, how short and long-term caregiving impacts our nervous systems, and ways in which caregivers can find wellbeing in the midst of it all.
Some caregivers feel there is an unspoken expectation that we only share the positive aspects of our role; that we appear to be brave and strong and grateful. In this episode, Allison and Justin talk about where that misperception may stem from, the damage it can cause, and how supporters can help.
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.
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.
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.
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.
There’s no question that the life of a caregiver is hard and that feelings of disappointment, comparison, and unfairness can be pervasive. So how do caregivers move through their days as they deal with the weight of it all? In this episode, Justin and Allison talk about how to keep going even when everything is terrible.
When someone in our life has an acute injury or medical situation, it makes sense for us to focus solely on their needs. But when an illness becomes longer-lasting or chronic, caregivers need to find ways to balance the needs of their loved ones with their own. In this episode, Allison and Justin talk about why that can be challenging, ways that can look, and what might happen if we don’t.
Caregivers often say that they aren’t seen. But what would it look like to be seen? What is it that they wish for? In this episode, Allison and Justin talk about times and ways that they have felt either unseen or seen in their caregiving roles and the implications of each. In addition, they provide a number of simple strategies that supporters can use to show intentional care for the caregivers in their lives.
Justin and Allison both have good news in their caregiving lives to share, but that news came at a cost. In this episode, they talk about how it's often after the event or the test results are in that the caregiver has a chance to process all they've just been through, but it's at that same moment that the world wants to celebrate and then move on.
Everyone experiences feelings of resentment, but caregivers have extra reasons these emotions might creep up. In addition, they have the layer of feeling as if they shouldn't feel this way and that they definitely shouldn't talk about it. Listen in as Justin and Allison discuss how resentment shows up in their lives, what it might be telling them, how they handle it when it does, and how supporters can help.
Comments made to caregivers can range from insensitive and hurtful to validating and supportive. In this episode, Allison and Justin highlight quotes shared by listeners while talking about how powerful words, or the lack thereof, can be.
It’s a cultural norm to reply that we’re “fine” when asked how we’re doing, even if that isn’t always an accurate answer. Caregivers find themselves hiding behind the “I’m fine!” mask even more often than others. In this episode, Justin and Allison discuss the reasons why, how caregivers can begin to say how they really are, and what supporters can do to help.
Even as they do so much for their loved ones, a common feeling experienced by caregivers is guilt. In this episode, Justin and Allison talk about feeling as if they are never doing enough, about how comparison can be dangerous, and the role that guilt plays in their caregiving lives.
Caregiving is a lonely role. From moments of being physically alone to situations where no one understands their reality, Allison and Justin talk together about the loneliness of being a caregiver.
Allison and Justin talk about how toxic positivity is used by and towards caregivers, and can lead to feelings of being dismissed and unheard. They share ideas of how to share and hear hard things without always going to the bright side.
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.
Allison and Justin talk about grief, discussing what they miss about the lives they had before their partners were diagnosed, the mourning over the lives they thought they would have but don’t, and the anticipatory grief they carry when thinking about the future. They connect their experiences to the collective feelings of grief being felt by many around the world during this time.
Becoming a caregiver can flip life on its head, upending so much of what we thought we knew and could count on. In this episode, Justin and Allison talk about all the ways caregiving has left them feeling dizzy and unmoored over the years and present some strategies they have found to be helpful.
A terrible car accident left Kelly Lang and her young daughter with Traumatic Brain Injuries (TBI). In this episode, she shares what happened and what it has been like parenting a child with a TBI while living with one herself.
The time, energy, and money that is involved with caregiving can often mean that hobbies a caregiver used to enjoy are no longer available to them. In this episode, Allison and Justin talk about hobbies they used to have, ones that are new since becoming caregivers, and ones that have been adapted. Also included are clips and quotes from caregivers of all kinds who submitted their thoughts on this topic.
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.
Trauma-informed yoga therapist, Jacqueline Vlietstra talks with Justin and Allison about the basics of nervous system regulation, how short and long-term caregiving impacts our nervous systems, and ways in which caregivers can find wellbeing in the midst of it all.
Caregivers regularly put the needs of their loved ones far above their own, even when that comes at a cost to their own wellbeing. In this episode, Allison shares how, after 14 years of accompanying her husband to a procedure he has regularly, she has made the decision to not attend for the sake of her own mental health. Listen in as she and Justin discuss the steps leading up to this decision, the complexities that surround it, and how supporters can help.
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.
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.
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.
Caregivers are weary. In this episode, Justin and Allison discuss some of the reasons, including extra responsibilities, lack of sleep, hypervigilance, and the emotional toll this role takes, as well as some realistic ways to find moments of rest.
Justin and Allison dig into what it feels like to be the physically healthy partner in their relationships, including the grief and struggle they experience when they are able to do things that their spouses cannot.
Allison and Justin talk about their upcoming summer travel plans: Allison with her spouse and Justin without. They cover the challenges and preparation needed for both situations and dig into why they struggle to delegate their caregiving responsibilities.
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.