We’re back and ready to dive into the community complaint department! In this episode, we catch you up on our six-month hiatus (spoiler: it’s been a mix of zero-fun medical stuff and a few bright moments). Erica’s disappointed with Alyssa’s coffee fail, but we’re making up for it with real talk about the challenges caregivers face, from feeling unprepared when heading home to navigating medical machines and interventions. Plus, we’re sharing an exciting research opportunity for caregivers who...
It's the last day of Disability Pride Month, which is appropriate considering that we at Caffeinated Caregivers have been avoiding talking about this topic all month. To be honest, Disability Pride has got us up in our feels a little bit, because as disabled adults who are also caregivers to disabled kids, it brings up a lot of conflicting and confusing emotions as we try to figure out our place in all this. And as far as we can tell, we're not alone in feeling a little confused about how we'...
This week, we're not bringing you stats or data or research... we're just bringing ourselves and our friend Karley. Because the truth is, data can only tell you so much, but for the three of us, some of the most impactful information we've ever received about navigating this caregiving life is through other's individual experiences. So today, we're getting a little vulnerable in sharing the moments that convinced each of us that we needed mental health support, the fear and shame that kept us...
Hey caregiver. How are you doing? No, we mean, how are you *really* doing? Because according to the research (both our informal research and the many published academic studies), mental health for caregivers isn't great. The "why" probably isn't surprising: lack of support, stress, poor health for our children, lack of time, and a ton of other barriers that keep us from accessing the mental health support that we need. But what can help to improve our mental health might surprise you a little...
When it comes to being a caregiver to a medically complex and/or disabled child especially in 2024, life can feel.... uncertain. Covid-era legislation that helped caregivers in many states is now being rolled back, support that our families and children need to thrive can be taken away at a moment's notice, and the threat of unexpected changes can make planning for our children's futures incredibly difficult. And these aren't just random examples. Erica and Alyssa are both navigating t...
When it comes to the careers of caregivers… things are complicated. While some caregivers are able to maintain a wide variety of careers with the help of flexible work, home health nursing, understanding employers, and other supports, it’s not like that for every caregiver, including those who need income desperately. And on the other hand, the systemic supports in place to support caregivers and their families, whether they wish to continue their careers or devote all of their time to caring...
The Caregiver Continuum. The continuum on which we as caregivers find ourselves looping around and around… and around again. We’ve gone through it. We’ve watched our fellow caregivers go through it. And today, we’re giving it a name. On this episode of Caffeinated Caregivers, we’re explaining what the Caregiver Continuum is, why it’s such a powerful tool for understanding both your journey and your capacity at any given time in your life as a caregiver, and how you can use it to give yourself...
Today’s conversation is a little lighter than usual becaaaaaaaause Erica and Alyssa are both still recovering from the holidays. Alyssa, because she always travels on holidays, and Erica, because she was literally sick the whole week. But don’t worry, this conversation is still packed full of holiday thoughts for you. Erica and Alyssa both share glimpses of what their holidays often look like (and let’s just say, their holidays look very different.) They also share their favorite ...
Disability-informed… If you’ve been following us, you’ve heard us use this phrase non-stop in the last month. So, you would expect that to be a common phrase, right? After all, the idea seems relatively self-explanatory. Well, hold on tight friends, because once again, the disabled folks are being overlooked and under-consulted. We’re about to share some wild statistics on just how bad this situation is. In this episode, Erica and Alyssa are breaking down all the parts of what it ...
In their last introductory episode, Erica and Alyssa share how their own experiences as disabled children shaped the way they navigate caregiving now. They touch on the examples that their own parents set as caregivers, the emotional weight caregivers carry for their kids, and the many ways we turned out to be better advocates for our kids than we ever were for ourselves. Plus, we each share our BIG SNAP. You know, that moment when you fully embrace the intense advocate you need to be to get ...
Erica and Alyssa get super vulnerable and share their own experiences of growing up as disabled children. We talk about our disabilities, the many feelings that come with growing up in a noticably different body, our complicated feelings on being seemingly "less disabled" as adults, and the way our experiences with disability have informed our whole lives. This conversation is not one where we claim authority over anyone or superiority over any other kind of caregiver. Instead, we're sharin...
It's our very first episode, and we promise we talk about way more than just coffee! Erica and Alyssa get into everything including how they first met, their own parenting and caregiving experiences, the power of language to describe our shared experiences, and what they hope to create and share through this podcast. If you're looking for a chill, lively conversation between two friendly caregivers, this is the space for you! We're so glad you're here. In this episode: [01:13] What we're d...
Welcome to Caffeinated Caregivers, with your hosts Erica Stearns and Alyssa Nutile, two caregivers and parents to medically complex children who are out here, ready to build a community of caregivers to empower each other and advocate for better support — for themselves and those they care for. Each month, we'll bringing you stories, research, resources, and hopefully a few laughs too as we chat with medical professionals, disabled adults, AND other caregivers who are laugh-crying their way ...