Caregiving and Parenting Are NOT the Same

The Odyssey: Parenting. Caregiving. Disability.

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 Croyle

And in so many cases, we don't really have anyone to talk to because if you turn to family elders who haven't been impacted by disability, I mean, I remember one person saying to me how parenting is all about disappointment and letdowns and you got it all at once when your son was born with Down syndrome. As a new parent, I just kind of nodded and thought, okay.

01:08:21:21 - 01:09:00:17

Erin Croyle

And that is the biggest bunch of baloney I've ever heard for children who are neurotypical non-disabled. The decks aren't stacked against them at birth right. But if you're in a wheelchair, if you have hearing loss, if you have any sort of thing that needs extra help or assistance, even though it's there, my gosh, it's hard to find. And it takes someone who can have the tenacity, the patience, the time and the energy to find all the supports that are there.

01:09:00:19 - 01:09:27:06

Erin Croyle

And even the supports that are there are so tough to get. I mean, waivers, my son has elopement issues and we have a waiver for him. And we wanted a fence as an environmental modification to help keep him safe in our yard without having to be out there constantly just to give him space without someone hovering over him.

01:09:27:08 - 01:09:53:04

Erin Croyle

And it took five years to get that approved. Much of that because of errors from the people working in the waiver system. I mean, that's the sort of thing that people are dealing with, the supports in place like respite care, personal care attendants, the hoops you have to jump through to get those supports are so tough to get.

01:09:53:06 - 01:10:21:22

Erin Croyle

And the people in those roles, they don't get paid enough or they're not really invested or they're college students, so they're in and out and gone. And as parents you have to train them. So you have to train a caregiver every couple of months. It's exhausting. And when parents or family members are providing the care, it is really difficult for them to be paid as caregivers.

01:10:21:24 - 01:11:12:10

Erin Croyle

Most states don't allow it, certainly not under 18. And the income loss that you face as a family who has to support children with disabilities, even if you have help around, it's substantial and it just creates this extra stress in your life that you really don't need. Even the term caregiving is being watered down. I get the grandparents and extended family that service parents gravitate towards the caregiver title because it is kind of a catchall, but a caregiver by definition and as a family member or paid helper who regularly looks after a child or a person who is sick, elderly or disabled, all parents serve it caregivers from time to time.

01:11:12:12 - 01:11:37:12

Erin Croyle

But that's not the same as the primary caregiver role that so many of us took on the moment we became a mom or dad. Now this matters because we need to acknowledge how different and challenging that hybrid parent caregiver role is. It can consume us without realizing it because we love our children so deeply, will go to great lengths to ensure their comfort.

01:11:37:14 - 01:12:04:20

Erin Croyle

And like I said before, that becomes our new normal. But again, it is not the norm. A really good example of this is part of why this episode is so late. So my family got hit with a stomach flu and it hit my daughter first and then I got hit because I had to steam clean the car with the mess that was even though my kid was nine, they couldn't really get it in the bucket.

01:12:04:20 - 01:12:31:23

Erin Croyle

And that's okay. And even though I wore like a mask and gloves, I still got sick a couple of days later. And my gosh, it was miserable. Well, then my 14 year old, he gets the stomach flu, but he's not able to really say that to anyone in a in a conventional way that makes us understand. So he's at school and I had already warned folks at school, so they're right there as part of the caregiving aspect.

01:12:31:23 - 01:12:59:14

Erin Croyle

I'm in constant touch with my children's school, both my son, my oldest, so three kids, so my oldest with Down Syndrome and ADHD and so many other medical complexities. And then my youngest with ADHD, who experiences anxiety, which can manifest in stomachaches and and emotional dysregulation. So I hear from their school a lot.

01:12:59:16 - 01:13:21:10

Erin Croyle

But when my 14 year old gets the stomach flu, it's it's an event. If he has to throw up, he doesn't really tell us. He just kind of does it. And so I have to pay attention to the nonverbal cues because he'll do this thing with his lips. That's, you know, he only does really when he's about to throw up.

01:13:21:12 - 01:13:47:08

Erin Croyle

And then I have to help him catch a bucket. And so as I'm on the mend from the stomach flu, I am then helping him get his vomit into a bucket. And I pulled an all nighter because every time I he would wake up and Russell, I would be ready to help him. And also because he was sleeping and laying down, I had to help him move forward so he wouldn't get sick or choke.

01:13:47:10 - 01:14:13:15

Erin Croyle

I mean, it was tough. And most 14 year olds, you're going to bring him some ginger ale and give him some Tylenol and they're going to be okay and they're going to watch TV. But for me, this was round the clock care. And that's the case with a lot of illnesses. And that's just one example. Several years ago, I wrote a blog called Caregiving and Parenting are Not the Same.

01:14:13:15 - 01:14:39:03

Erin Croyle

And to this day, that blog gets more traffic than probably anything I've written. And so I'm going to read some of those comparisons to give myself some grace in what has been a really tough year. I'll also put the article link in the show notes. You can read it in your own time, and I would love to hear what differences you recognize in your own circles and in some of the challenges that you face.

01:14:39:06 - 01:15:07:18

Erin Croyle

Because like the title of this podcast, I think we need to acknowledge these differences and support each other and also let others know what we're going through. Because I don't know about you, but this experience of caregiving can be isolating. You are so entrenched in all of the work that you have to do both for your actual job and then for your parenting role and then for your caregiving role.

01:15:07:20 - 01:15:41:12

Erin Croyle

And then if you have a partner in your life, there's that other children, there's that a pet, there's that there. There aren't enough hours in the day to do it all. And I really think it's important for us to start recognizing that and start really just asking those around us to acknowledge that, to recognize that, and then help fix the structures in place that make it so hard for us to just function.

01:15:41:14 - 01:16:16:07

Erin Croyle

Because even advocacy efforts that we could be doing as caregivers, the people I know are so tired they can't get it together to just advocate for the most simple things. And so because I'm so spent, I'm going to read a bit from my blog and leave it at that. How is parenting different from caregiving? Parents need babysitters. Caregivers need respite.

01:16:16:09 - 01:16:44:09

Erin Croyle

Parents take their kids to well visits and sick visits a couple of times a year. Caregivers administer treatments and carry binders full of medical records to quarterly, monthly, sometimes weekly appointments. Parents listen to doctors. Caregivers collaborate with doctors. Caregivers get second, third, even fourth opinions. Caregivers are often the most important part of the medical team. Parents make dinner.

01:16:44:11 - 01:17:11:15

Erin Croyle

Caregivers feed their children by mouth, by tube, whatever is needed. Parents tell their kids to do their homework while they prep dinner. Caregivers spend an hour helping a child do what should be 10 minutes of homework, which they've also helped modify. Dinner is usually a crapshoot. Parents go to parent teacher conferences. Caregivers go to those conferences. And also IEP meetings.

01:17:11:15 - 01:17:41:20

Erin Croyle

Behavior plan meetings, care plan meetings, person centered planning meetings, Medicaid eligibility meetings. So many meetings. Parents take their kids to soccer practice, drink coffee on the sideline and shoot the breeze with other parents. Caregivers search for a sport or program that is suitable. Fill out piles of paperwork, meet with the people running the program, go for accommodations needed and are on high alert, monitoring their loved one, often jumping in to help.

01:17:41:22 - 01:18:09:06

Erin Croyle

Sometimes even coaching because no one else there will make the accommodations needed for their child to participate. Parents sign their kids up for afterschool clubs. Caregivers contact clubs to see if supports are available. They usually aren't. So they request assistance offered to help change the system or offer support themselves. Caregivers sometimes give up or don't bother asking because it's not worth the effort.

01:18:09:08 - 01:18:35:10

Erin Croyle

Parenting is planning a family vacation to somewhere fun. Caregiving is wondering how you can make endless visits to specialists feel like a vacation because you have no money or leave for anything else. Caregiving is for getting that dream vacation and finding something that's doable because medical conditions make travel difficult. Parents park in the most convenient space available for their family's needs.

01:18:35:12 - 01:18:58:06

Erin Croyle

Caregivers arrive to events early, hoping to secure a disabled parking spot. Those spots are often taken by parents who don't need them but thought 5 minutes don't matter. So caregivers navigate dangerous parking lots, pushing a wheelchair or monitoring a child who might collapse in the middle of the parking lot or run off with no safety awareness of cars.

01:18:58:08 - 01:19:27:16

Erin Croyle

Parents are often sleep deprived for the first few months and years of a child's life. Caregivers are sleep deprived indefinitely. Parents carry a diaper bag. And later some extra clothes and eventually just their own stuff again. Caregivers bags only get bigger in every sense bigger diapers, bigger clothes, and the emotional baggage we carry. But keep buried down below gets heavier as we see our loved ones peers pass them by as the little kid cute fades.

01:19:27:20 - 01:19:58:03

Erin Croyle

Stairs become less kind and more prominent and it stings. But we barely have time to process it because we have to keep on caregiving. Parents rules change when their children become adults. They'll always be a parent, but their work is done. Caregivers will always be caregivers, and their role becomes more complicated as time goes on. So if November National Caregivers Month, how do we care for our caregivers?

01:19:58:05 - 01:20:32:14

Erin Croyle

We need to be kind to ourselves. We need to gently let others in our lives know how hard this can be. While also letting them know it's not our children that make it hard. I can never say this enough. My children are not a burden. It is the constructs of our society that create the burden. It's not possible to meet all the demands placed on us.

01:20:32:16 - 01:21:08:06

Erin Croyle

And when you're a caregiver and you're literally taking care of someone else, keeping them alive, keeping them well, keeping them out of the hospital, keeping them in a safe space in their own mind and body, that is a lot of work that no one is going to understand unless they've had to do it themselves. And so we need to be more honest about our workloads, about what we're doing in our days.

01:21:08:08 - 01:21:18:09

Erin Croyle

Sure, things are nobody's business, but my gosh, sometimes I think it really helps for people to know what other people are going through.

01:21:18:11 - 01:22:01:16

Erin Croyle

Stop shoulding yourself. I should have taken a shower today. I should have eaten breakfast. I should have gotten this podcast out last month. Should, should, should y'all. There are so many shoulds out there that we could wake up tomorrow and everything could change. What we really should be doing is prioritizing what matters. And so if you have to miss a deadline or just know that some days the only thing we can do is meet the most basic and primal needs around us.

Erin Croyle

So be kind to your family, to yourself. And when everything feels like too much, toss out all those arbitrary rules that you make for yourself and others make for you. Ask for some help. Step outside and breathe. And remember, you're not alone.

Erin Croyle

So listen to all my fellow caregivers out there. Happy national caregivers Month. Take a load off. Do something for yourself. Chill out and be sure to share. Review. Subscribe. Like follow. Or whatever it is you need to do to get a ping When my next episode drops. This is The Odyssey. Parenting. Caregiving Disability. I'm Erin Croyle. We'll talk soon.