In Sickness

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. --- Join us for an online support group related to this episode on Monday, May 12 from 6:00-7:15om CT. Register Here! --- insickness.care | thenegativespace.life

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. --- substack Instagram Kelly Lundin Lang Facebook The Miracle Child Facebook Page LinkedIn The Miracle Child The Miracle Child: Traumatic Brain Injury and Me --- Join us for an online support group related to this episode on Thursday, May 1 from 6:00-7:15 CT.  Register Here! --- insickness.care | thenegativespace.life

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. --- Join us for an online support group related to this episode on Monday, April 14 from 6:00-7:15 CT. Register Here!

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. --- The Unseen Divide - A Personal Passage from a Spousal Caregiver --- Join us for an online support group related to this episode on Sunday, March 30 from 6:00-7:15 CT. Register Here!

Oncologist Dr. Arjun Gupta's team has coined the term “time toxicity,”which refers to the significant time investment required for cancer patients and their caregivers to undergo cancer treatment and related activities. In this episode, he talks with Allison and Justin about how he came to be invested in the needs of caregivers and what his team has learned and hopes to accomplish with their research on time toxicity. Note: while Dr. Gupta's research focuses on cancer patients and caregivers, his learnings transfer to many if not all types of caregivers. --- Join us for an online support group related to this episode on Sunday, March 16, from 6:00-7:15 CT. Register here!

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. --- Join us for an online support group related to this episode on Monday, March 3, from 6:00-7:15 CT. Register here.

When going through the challenges of caregiving, it's common for caregivers to struggle to find a safe place to vent. Caregivers may hesitate to share with their loved one, friends may not get it, and some are worried to burden other caregivers with their hard things. Despite all of this, not venting isn't an option. In this episode, Allison and Justin discuss all of this as well as strategies for both caregivers and supporters. --- Join us for an online support group related to this episode on Tuesday, February 18, from 6-7:15 pm CT. Register here.

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. --- Yoga for Resilience --- Join us for an online support group related to this episode on February 3 from 6:00-7:15pm CT. Register here.

As caregivers, it can feel as if our loved one's health is in the driver's seat and that there are few parts of our lives over which we have control. In this episode, Allison and Justin share ways in which they have been maintaining or taking back their agency in various aspects of their lives and how supporters can help. --- Join us for an online support group related to this episode on Tuesday, January 22 from 6:00-7:15pm CT. Register here.

Internet friends who had bonded over caregiving, Justin and Allison set out to record six episodes of a podcast in early 2020. In this, their 100th episode, they look back at how far they've come, favorite moments along the way, the impact this podcast has had on them, and what they hope for next as well as listen to messages sent in from listeners.

Becoming a caregiver can happen at any age, and while there are some universal truths, the age and stage of life that a person is in when this occurs can impact the way this feels and unfolds. In this episode, Allison (44) and Justin (42) talk with Ella Whitlecroft (23), Glenn Nishida (65), and Harriette Manis (74) about how the age and place in life they were in when they began caregiving played a role in their life decisions, finances, education, employment, and relationships. -- Join us for an online support group related to this episode on Sunday, November 24, from 6:00 - 7:15 pm CT. Register here. -- Episode 100 is coming up and we'd love for you to be a part of it. You can call us at (360)389-2334 and leave a message sharing a favorite moment, memory, or episode, what the podcast has meant to you, or anything else you'd like to share. We'll collect the messages and share some as part of our 100th epsiode. Thanks for listening!

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. --- Join us for an online support group related to this episode on Monday, November 4, from 6:00 - 7:15 pm CT. Sign up here! --- Episode 100 is coming up and we'd love for you to be a part of it. You can call us at (360)389-2334 and leave a message sharing a favorite moment, memory, or episode, what the podcast has meant to you, or anything else you'd like to share. We'll collect the messages and share some as part of our 100th epsiode. Thanks for listening!

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. --- Join us for an online support group related to this episode on Tuesday, October 22 from 6:00-7:15pm CT. Sign up here! --- Episode 100 is coming up and we'd love for you to be a part of it. You can call us at (360)389-2334 and leave a message sharing a favorite moment, memory, or episode, what the podcast has meant to you, or anything else you'd like to share. We'll collect the messages and share some as part of our 100th epsiode. Thanks for listening!

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.

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. --- Caring Across Generations Care Voter Guide

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. --- https://www.jessicacguthrie.com/ https://www.instagram.com/careercaregivingcollide/  

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.

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.

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.

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.

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.  

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.

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.

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. --- Maybe You Should Talk to Someone - Lori Gottlieb Psychology Today National Alliance on Mental Illness

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.

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.

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.

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. --- https://www.embracingcarers.com/

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.

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. --- NYTimes: "I Wish I Had Known That No One Was Going To Help Me" NYTimes: "The Quiet Rage of Caregivers"

When one member of a family has an accident or receives a diagnosis, every person feels the impact. In this episode, Allison and Justin interview Dr. Vaida Kazlauskaite, a medical family therapist, about how we can recognize and care for the needs of every family member.

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. --- In Sickness Episode 55: Grieving at the Holidays

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.

Treatment side effects, exhaustion, and role changes are just a few of the many reasons that a couple may struggle with or shy away from physical intimacy when dealing with a recovery from a serious illness. In this episode, Allison speaks with marriage and family therapist from Memorial Sloan Kettering, Dr. Talia Zaider, about how common this is and what couples can do when it does. 

Medical appointments are often a huge component of a caregiver's life, the impact spanning far beyond the time spent with the provider. In this episode, Justin and Allison discuss all that goes into preparing for, living through, and recovering from appointments from a caregiver perspective.

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. --- Ring Theory: How not to say the wrong thing

As caregivers, we have a front row seat to the suffering of our loved ones. We are often the only people who see them in their hardest moments. In this episode, Justin and Allison talk about what that's like, the impact it has on them, and how supporters can help.

When our loved one's days are numbered or their good days are few and far between, we can feel like we need to complete bucket lists or that we must make the most of every moment. In this episode, Allison and Justin talk about how that pressure shows up in their lives and what they do about it.

Caregivers, like any of us, can fall into the trap of comparing themselves to others. Whether it's comparing the severity, length, or type of caregiving they are doing with someone else, comparing their own struggles with that of the person for whom they are caring, or comparing their lives to their non-caregiving peers, these thoughts can creep in and keep caregivers from sharing their stories and getting support. Listen in as Allison and Justin talk about the variety of ways comparison can show up and how supporters can help.

Each of us is wired differently and that wiring can lead us to choose our careers, our partners, our hobbies. But caregiving is a role into which we are thrust, so how do our personality traits help or hinder our caregiving lives? In this episode, Allison and Justin interview certified Enneagram Coach Jenna Law to learn more. --- https://www.enneagraminstitute.com/ https://www.everydayenneagram.me/      

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.

There are things that we may grieve even before they happen. The death of a loved one is one such event, but it's certainly not the only. In this episode, Justin and Allison discuss the role this type of grief plays in their lives and how supporters can help.

Of all the emotions caregivers experience, anger isn't one that is spoken of very often. In this episode, Allison and Justin talk about why it is that caregivers feel they aren't able to speak about their anger, triggers that may cause anger to occur, and strategies that may support caregivers as they process these feelings.

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.

There is often confusion around what palliative care is, who it is meant for, and at what stage of life. In this episode, Allison and Justin interview Dr. Drew Rosielle, who provides the history, describes the model, and outlines the goals and benefits of palliative care. --- https://getpalliativecare.org/

Caregiving can impact our friendships in a variety of ways. Some friends disappear. Others stick around, but disappoint. Others we find and connect with because of our caregiving role. Listen in as Allison and Justin dig into these different types of relationships.

One of the few things we can count on in this life is death and yet our culture is not good at talking about or preparing us for it. In this episode, Justin and Allison speak with Jane Whitlock, an end of life doula and former spousal caregiver, about her role, the stages of death, and the questions we can start asking and conversations we can start having now about this important and inevitable topic. --- Jane Whitlock - Website What I Learned About Life from Death | Jane Whitlock | TEDxMinneapolis  Gone From My Sight: The Dying Experience - Barbara Karnes Being With Dying - Joan Halifax Minnesota Death Collaborative GoWish Cards Advice to Future Corpses (and Those Who Love Them) - Sallie Tisdale A Beginner's Guide to the End - BJ Miller National End of Life Doula Alliance

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.

In January, Allison was with her mother-in-law through her final days on earth. In this episode, she talks about what that was like and shares how the experience of being present during the days of hospice and in the moment of her death has changed her perspective as a caregiver.