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 want to make an impact. Tune in for relatable rants, practical tips, and a call to action for caregivers to support each other and help close the gaps!

In this episode:

[00:00:00] Intro
[00:00:45] Erica expresses her disappointment with Alyssa (she didn't bring coffee)
[00:02:30] Alyssa and Erica address the elephant in the room: where we've been for the last six months
[00:09:45] How Alyssa found out that there's a complex care team available at her daughter's hospital
[00:15:42] An exciting research opportunity for caregivers who have the bandwidth to share their experience
[00:19:53] How shockingly unprepared most caregivers feel when going home for the first time and why we aren't given information we often need
[00:27:57] When it's too much information and when it might not be enough
[00:34:27] Why we need beeter conversations on medical machines and interventions before going home
[00:40:58] Why you NEED to do that sleep study inpatient
[00:47:45] How caregivers could support each other in these situations
[00:51:00] What you can do to address some of these gaps!

Apply for the SafeCare@Home4Kids research study: https://bit.ly/SafeCareStudy

For the transcript, our blog, links, and more, visit our website: https://www.caffeinatedcaregivers.com/podcast/
Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.
Subscribe to our show in your favorite podcast app so you don't miss a single episode! 
Thanks friends! Talk soon!

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're supposed to engage with Disability Pride. So today, we're digging into some history behind Disability Pride, what we're actually celebrating during Disability Pride (spoiler: it's not actually the pain or suffering that we or our kids endure), why it's valuable and important to celebrate (but why it's not more important than protecting your own energy), AND how caregivers fit into all of this.

If you've been confused about what Disability Pride means for caregivers, this episode is for you. Let's get into it.

In this episode:

[00:00:00] Intro
[00:00:35] Erica and Alyssa discuss the merits present (or not) in grapefruit
[00:04:16] Why Erica and Alyssa have been avoiding this conversation topic
[00:10:57]Alyssa's big and complicated feelings around Disability Pride (and why being a caregiver has changed how she would otherwise interact with Disability Pride)
[00:16:19] A quick history of Disability Pride Month
[00:22:53] What allyship looks like and how caregivers fit into Disability Pride
[00:30:10] Why some caregivers don't feel like they relate to Disability Pride
[00:30:38] The life and death ramifications of untreated mental health struggles (and it's not just about ideation around unaliving yourself)
[00:35:37] Ways that caregivers can join in the celebration and why they can let go of guilt if they don't
[00:41:18] What we're actually celebrating (and what we aren't) during Disability Pride

For the transcript, our blog, links, and more, visit our website: https://www.caffeinatedcaregivers.com/podcast/ep11
Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.
Subscribe to our show in your favorite podcast app so you don't miss a single episode! 
Thanks friends! Talk soon!

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 from accessing support earlier, and why we ALL deserve mental health support at any point on this journey, not just when we can't function anymore.
Let's get into it.

In this episode:
[00:00:00] Intro
[00:00:35] Erica, Alyssa, and Karley discuss what's fueling them, both existentially and caffeinated
[00:06:54] Why caregiver mental health affects entire communities and why caregivers often put off addressing their mental health for so long
[00:13:35] Our current mental health state, as of the time of this recording
[00:20:32] The physical symptoms that spurred Karley into getting support for her mental health
[00:21:55] Erica's mental health turning point
[00:26:03] The dark side of dissociating and delayed processing that exacerbated Alyssa's mental health symptoms
[00:30:38] The life and death ramifications of untreated mental health struggles (and it's not just about ideation around unaliving yourself)
[00:33:06] How to overcome the fear many caregivers have around getting mental health support
[00:41:18] Why you don't have to be completely "nonfunctional" before getting mental health support (don't let it get that bad, friends!!)
[00:45:03] The type of therapy that helped Karley (it's not EMDR) and other solutions that Erica and Alyssa have found to be helpful
[00:56:20] Why asking for mental health support is a sign of strength, not weakness

For the transcript, our blog, links, and more, visit our website: https://www.caffeinatedcaregivers.com/podcast/ep10
Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.

Subscribe to our show in your favorite podcast app so you don't miss a single episode! 

Thanks friends! Talk soon!

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 bit.
In this episode, we're sharing lots of published research (because we seem to need that validation) and data collected from our caregiver community that shed light on the state of mental health for caregivers. We're sharing what impacts caregivers' mental health, what keeps caregivers from discussing mental health issues, and the barriers caregivers have to accessing mental health support.
We're also sharing the best advice caregivers have received from mental health professionals and what both our community (and the published research!) say can have the biggest positive impact on caregiver mental health (spoiler alert: it's us! All of us together, supporting each other!)
Let's dive in!

In this episode:
[00:00:00] Intro
[00:01:00] Erica & Alyssa discuss the eclipse (they both live in the path of totality!)
[00:06:48] The activities fueling our mental health this week
[00:11:02]  Why caregiver mental health matters and why we need to talk about it
[00:14:57] What stops caregivers from discussing their mental health
[00:23:03] The published data that we found discussing caregiver mental health (shocker: we have higher rates of anxiety and depression)
[00:27:01] The questions we asked our caregiver community about the state of their mental health and the somewhat surprising responses
[00:34:00] Why caregivers are struggling with their mental health so much
[00:43:00] The barriers that caregivers say prevent them from getting mental health support
[00:46:43] The best advice caregivers have received from a mental health professional and why we have to prioritize our mental health eventually
[00:53:01] A short discussion about the way medication can be a tool for caregivers to support their mental health
[00:58:44] The ways professional therapy can support your mental health, and the considerations you may want to keep in mind as you look for a therapist
[01:01:16] What our community (and the research!) says has the biggest positive effect on our mental health

For the transcript, our blog, links, and more, visit our website: https://www.caffeinatedcaregivers.com/podcast/ep9
Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.

Subscribe to our show in your favorite podcast app so you don't miss a single episode! 

Thanks friends! Talk soon!

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 these uncomfortable waters right now.
In this episode, Erica and Alyssa share what's been keeping them from the podcast the last couple of months, the difficult choices they've been making recently, the intricate governement systems they've been navigating, and the state of some caregiving programs across the country.
The conversation gets a little heavy a times, but stick with it until the end! Turns out there is a bright spot in all of this, and that's our collective community of caregivers, and the way that we continue to rally and support each other to improve life for all of us.
In this episode:

[00:00] Intro
[00:57] Why we're qualified to talk about caregiving
[03:24] What's fueling Erica & Alyssa today (both liquid and existential)
[09:59] Erica's unexpected and distressing situation with children's Social Security support
[13:13] A very drawn out separation with Alyssa's family's favorite nurse and how that uncertainty affects decisions around her daughter's IEP transition
[22:42] How sudden changes in personnel affect our kids, who thrive on routines and relationships
[26:28] Erica's own experience navigating her children's IEP recently and the caregivers she relied on to guide her through 
[29:42] Some of the changes happening to caregiver programs in multiple states and why the discourse around these changes is so disheartening
[37:42] Why the collective uncertainty makes it harder to weather any change in our support
[41:28] The Bright Spot: Us, as caregivers, continuing to bolster and support each other as we fight together to get the support we and our children need

For the transcript, our blog, links, and more, visit our website: https://www.caffeinatedcaregivers.com/podcast/ep8
Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.

Subscribe to our show in your favorite podcast app so you don't miss a single episode! 

Thanks friends! Talk soon!

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 for their child, vary widely by state and are often inadequate to cover all of a family’s basic needs.

And that’s the real kicker: When caregivers lose their livelihood or a significant portion of their income and when there are few systemic solutions to offer support instead… it impacts the medically complex and disabled kids too. 

Today we’re digging into this phenomenon: what’s going on with caregivers and careers, how broad the impacts are, how caregivers manage careers and caregiving, what systemic and governmental support we need, AND how we can advocate for these supports, including a big situation happening in Indiana right now!

It’s a big topic, so let’s dive right in!

In this episode:

[02:00] The different types of water fueling Erica and Alyssa today

[11:05] How we discovered that the intersection of caregiving and careers was such a big topic

[15:21] Why the career impact of being a caregiver is so important and who it affects (spoiler alert: it’s not just the caregivers)

[20:08] The data and polls that we have available currently, illustrating the state of careigiving and careers

[25:55] The hardships that caregivers and their families face due to potential career impacts

[36:52] A potential upside to career changes caregivers experience

[40:17] How caregivers who currently have a career balance work with the duties of caregiving and daily living, etc

[46:06] Systemic solutions that would improve the lives of caregivers and their medically complex and disabled children

[55:00] How caregivers can advocate and create the change they need for themselves and their families

[59:53] The state of paid-caregiving in Indiana and why it might be time for some Capital-A advocacy if you have the time and energy!

For the transcript, our blog, links, and more, visit our website: https://www.caffeinatedcaregivers.com/podcast/ep7

Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.

Subscribe to our show in your favorite podcast app so you don't miss a single episode! 

Thanks friends! Talk soon!

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 —and your fellow caregivers— the grace and space we all deserve.

Aaaaaand, also why the constant worry about restarting the Caregiver Continuum is exhausting. You know, just typical caregiver stuff.

In this episode:

[00:00] Gemma refuses to be left out of the conversation

[00:37] Alyssa waxes poetic about eyebrow waxing

[03:50] Erica & Alyssa get down to business, introduce the Caregiver Continuum and why it’s so important

[10:28] Erica & Alyssa describe why it’s useful to understand the Caregiver Continuum

[13:23] Alyssa’s Caregiver Continuum HOT TAKE

[18:20] Erica introduces the three stages of the Caregiver Continuum (and how they constantly loop back to each other)

[19:31] Alyssa describes stage number one, The Just Surviving Stage, and how you might constantly find yourself returning to this stage as a caregiver

[24:49] Erica & Alyssa share some of the rougher mistakes and pitfalls associated with the Just Surviving stage

[28:29] Alyssa describes the second stage, The Burnout Stage, and the crash that often accompanies it

[35:30] Erica & Alyssa share their own stories of experiencing the Burnout stage

[41:37] Erica coins the name for stage three, The Eff Around and Find Out Stage, and why not everyone may spend a lot of time in this stage

[47:53] Alyssa & Erica wrap-up and give a little glimpse at the next episode

For the transcript, our blog, links, and more, visit our website: https://www.caffeinatedcaregivers.com/podcast/ep6

Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.

Subscribe to our show in your favorite podcast app so you don't miss a single episode! 

Thanks friends! Talk soon!

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 holiday survival suggestions from this community (some are so thoughtful, and some are hilarious but also very accurate). 

Plus, they officially celebrate one year since Caffeinated Caregivers was formed as an idea, and some updates to this platform and community that they’ve been working on for the past month.

If you’re looking for a chill caregiver conversation to help you recover from the holiday madness, this is the episode for you!

In this episode:

[00:00] Alyssa eats soup too fast

[01:00] Erica shares how she very literally survived the flu over Thanksgiving 

[05:41] Alyssa explains how she manages traveling with a disabled child every holiday

[10:02] Erica learns the proper way to drink English breakfast tea and Alyssa’s coffee is festive

[13:07] Alyssa and Erica celebrate their idea-versary for Caffeinated Caregivers

[17:01] The recent updates you need to know about Caffeinated Caregivers (and how we aspire to be Buzzfeed, but for caregivers)

[21:33] Erica and Alyssa share responses from the caregiver community on how to survive the holidays (including one response that’s both a little alarming, but very accurate)

[26:46] Alyssa’s ideas for how to handle uncomfortable and rude commentary during the holidays

[31:25] Erica shares how her expectations for the holidays have changed over the years

[35:44] Why it’s okay to just survive and not thrive as a caregiver in this season

[37:29] Alyssa shares how she balances the holidays with both disabled and non-disabled kids

[41:53] Alyssa and Erica share their holiday survival HOT TAKES

For the transcript, our blog, links, and more, visit our website: https://www.caffeinatedcaregivers.com/podcast/ep5

Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.

Subscribe to our show in your favorite podcast app so you don't miss a single episode! 

Thanks friends! Talk soon!

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 means to be “disability-informed” in a variety of aspects. Not only that, but they cover how you can become more disability-informed, and what being disability-informed could mean in terms of better healthcare, access, and systems for disabled folks. 

In this episode:

[00:54] Erica and Alyssa discuss why men’s flannel is superior to women’s flannel (it’s not fair!!)

[04:45] Erica and Alyssa discuss their favorite 2000s indie/alt music and why the music scene is more chill now

[11:05] “Disability-informed” and how we maybe possibly coined that term (HOW?! WHY does this not already exist?!)

[15:22] Why we need officially defined terms like “disability-informed” and where disabled voices are still being left out

[20:27] The societal benefits to having spaces, places, and more that are disability-informed

[24:44] How to identify professionals and others who are disability-informed (some of this is going to be both super obvious and kind of surprising at the same time)

[33:11] How being disability-informed can benefit your child (and you!)

[34:45] How you can become even more disability-informed

[39:54] Why, as a caregiver, you are already disability-informed to a certain extent

For the transcript, our blog, links, and more, visit our website: https://www.caffeinatedcaregivers.com/podcast/ep4

Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.

Subscribe to our show in your favorite podcast app so you don't miss a single episode! 

Thanks friends! Talk soon!

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 your kid the proper, timely medical care or access they deserve.
When we say that disability has informed every aspect of our lives, we really do mean it, from the way we advocate, to the way we parent and caregive now, to the way we appreciate our own parents and caregivers. If you're the parent and caregiver to a medically complex or disabled child, this episode is for you! We're so glad you're here!

In this episode:

[00:48] Erica's uncaffeinated beverage of the day
[03:18] Erica's Caffeinated Confessional and a TLC throwback
[08:37] How Alyssa's mom set an amazing caregiver example for her growing up
[13:03] An ode to Erica's mom and stepdad who helped her navigate her medical complexities
[16:36] The medical baggage we both brought along with us into caregiving
[24:25] Alyssa's big "snap" when she fully embraced advocacy for her daughter
[28:51] How advocating for our kids has made us better advocates for ourselves too
[33:21] The emotional weight we carry as caregivers and the ways our parents vented their frustrations
[42:51] The lack of community Erica and Alyssa experienced in childhood and the determination to give their children something better

Links:
For the transcript, our blog, and more, visit our website: https://www.caffeinatedcaregivers.com/podcast/ep3
Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.

Subscribe to our show in your favorite podcast app so you don't miss a single episode! 

Thanks friends! Talk soon!