Right now in the United States, more than 53 million family members are providing unpaid and mostly unseen care to the loved ones in our lives. According to the National Council on Aging, that's an economic value that totals more than $470 billion.

Since November is National Family Caregivers Month, we wanted to highlight what it means to be a caregiver and why everyone should be looking out for the caregivers in their lives.

The Odyssey: Parenting. Caregiving. Disability. 

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. 

 

SHOW NOTES:

Read more about how different caregiving and parenting are on the Center for Family Involvement's blog:

CAREGIVING AND PARENTING ARE NOT THE SAME

CAREGIVING AND PARENTING ARE NOT THE SAME: BACK TO SCHOOL EDITION

Learn more about disability services and how to become a paid caregiver.

 

 

TRANSCRIPT:

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work with the Center for Family Involvement and VCU's Partnership for People with Disabilities.

 

01:00:37 :05 - 01:00:47 :20

Erin Croyle

I started this podcast because the media rarely highlights the issues that impact us so deeply. Caregiving is one of them.

 

01:00:47 :22 - 01:01:10 :03

Erin Croyle

More and more, we're seeing the term caregiving lumped in with general parenting duties, diluting what it truly means to be a caregiver. In honor of November being National Family Caregivers Month. I'm going to break down how parenting and caregiving are fundamentally different.

 

01:01:10 :05 - 01:01:38 :17

Erin Croyle

I'm going to keep it real with you. Listener. This episode is really late. It should have been out last month and that episode is still coming. It's in honor of October being National Disability Employment Awareness Month, and I've interviewed two wonderful guests already and that will be out soon. But like so many parents and caregivers, I know things are just relentless.

 

01:01:38 :19 - 01:02:07 :08

Erin Croyle

And I am at the point in my life where I recognize that it is impossible to meet all of the demands placed on us as parents who are also caregivers. But it's almost as impossible to realize that what we as parents and caregivers come to know is our normal is not the norm and it is so important to point this out, not to wallow in how hard it can be because nobody has time to wallow.

 

01:02:07 :14 - 01:02:33 :23

Erin Croyle

And who the heck wants to anyway, right? But it's important to validate the feelings of overwhelm and burnout and exhaustion and sadness and frustration that we feel this society we live in isn't designed for kids like ours, and it's not kind to caregivers either. Even politics. And we don't really get into politics, right? I leave that out of this.

 

01:02:34 :00 - 01:03:03 :20

Erin Croyle

But for caregivers, there are things you need to know during voting cycles about the way that our government structures work that most people don't even know are there. You have to understand health care and Medicaid and waivers and supports that your children will need when you're gone. And you have to face the extreme difficulty of knowing that you could very well outlive your child.

 

01:03:03 :22 - 01:03:33 :20

Erin Croyle

Do you have to set up things for when you're gone to make sure that your kid is going to be okay? It's something else. And I don't think that as caregivers, we really talk about that openly. That kind of melancholy that we live in. And this isn't just about those significant disabilities where someone will need care their whole life.

 

01:03:33 :21 - 01:04:08 :11

Erin Croyle

I mean, that's certainly part of it. But I've got to be honest, my own able isn't blind in me to how difficult it can be to care for someone with ADHD or mental health struggles. Neurodiversity. Physical Disabilities. Even though someone will be able to live on their own one day with less supports does not mean that the caregiving to get them to that point is not substantial.

 

01:04:08 :13 - 01:04:41 :04

Erin Croyle

It's a lot. And just getting a diagnosis for these invisible disabilities in rare conditions is really hard. And that alone takes time. Believe me, I'm there. I have three kids and neurodiversity is through and through in our household. And and we didn't really see that until later because my oldest child's needs were so great. The idea that there was neurodiversity in my youngest, I don't think that I picked that up soon enough.

 

01:04:41 :04 - 01:05:12 :15

Erin Croyle

And I'm still struggling to recognize what they need and the differences. And that's coming from me. Who was diagnosed late in life with ADHD, who's understanding my own nerd adversity and how that's impacted me my whole life. There's such a stigma to so many disabilities. Neurodiversity is whatever you want to call them that we fail to recognize the accommodations and supports and understanding that is needed.

 

01:05:12 :17 - 01:05:44 :09

Erin Croyle

And unless you experience that, you're not going to understand it. And in fact, I know in some ways those invisible disabilities can be harder because you have to constantly prove to people that it's not a spoiled kid, that it's not a bad child, that it's not bad parenting. It's not. I used to joke that no, doesn't really work in our house and I could feel the eye rolls from the family elders.

 

01:05:44 :11 - 01:06:31 :03

Erin Croyle

And I'll tell you what. No does not work in our house. It just doesn't. And it's hard. My kids aren't spoiled. Just had to take a completely different route of how I view parenting than what I thought it would be. And I often wonder who I would be if my kids were non-disabled and neurotypical. And I'm actually really grateful that the differences in my kids have enlightened me to the differences that we need to accept in this world, in this society, in our schools, everywhere.

 

01:06:31 :05 - 01:07:01 :01

Erin Croyle

And we're still not there. That's why we really need to highlight how complicated and different the caregiving component of being a parent caregiver can be. My first child, Arlo, as I mentioned in the intro, was diagnosed with Down syndrome soon after he was born. Later came other diagnoses hearing loss, sleep apnea, ADHD for him as well. Anxiety. He's immunocompromised.

 

01:07:01 :03 - 01:07:28 :14

Erin Croyle

We've dealt with heart issues both early on and then later asthma, and then most recently something called ITP or chronic thrombocytopenia. This is low platelet counts that you discover in routine bloodwork, and that routine blood work is routine for my kid with Down's syndrome. But most kids don't have to have annual bloodwork to monitor thyroid and iron and all of these things, right?

 

01:07:28 :14 - 01:07:56 :06

Erin Croyle

That's just another caregiving aspect that is necessary and important, but it's a lot. And thankfully, my son is very good with doctors, but early on he wasn't. And it was torture. Taking him to see an EMT and have to hold him down to get his ears cleaned or literally wrap my body around him for his blood draws. It rips your heart out.

 

01:07:56 :08 - 01:08:21 :19

Erin C