Geralyn Arango Deeley (00:10):
In the words of former First Lady Rosalind Carter, "There are only four kinds of people in the world: those who have been caregivers; those who are currently caregivers; those who will be caregivers; and those who will need caregivers." So hey, family member, let's talk about lessons on the art of caregiving on Our Parallel Path.

Geralyn Arango Deeley (00:38):
Hello, and welcome to season four of Our Parallel Paths: A Future for My Loved One with a Disability and for Me. I'm your host, Gerry, Dr. Geralyn Arango-Deeley, and this podcast is about just what the title says, the parallel paths of family members and their loved ones with intellectual disabilities. I'm a parent myself, and I always have questions.

Geralyn Arango Deeley (01:03):
Our Parallel Paths is about nurturing and supporting ourselves as we nurture and support our loved ones with intellectual disabilities. Our roles as family members are ever-changing and evolving alongside our loved ones. So there's more than one path, more than one future to talk about, and that's why we're here. I hope the stories and perspectives of my podcast, guests, and me give you hope, information and ideas for your path.

Geralyn Arango Deeley (01:33):
So I am thinking about the number 10. In these last 10 years since my children's father died, supporting Nic's everyday everything, work, living situation, social life, health, has become even more my mission and passion as a mother, because we're one parent down already. Supporting Nic's everyday life has become a big part of my life's work directly and indirectly. Right now, everything I do has something to do with the path that Nic and I, and his marvelous, devoted, and sassy sister, the one who will eventually take over what we create as we go, everything I do relates to the path our family is on, the path we are on with Nic.

Geralyn Arango Deeley (02:20):
I now work at what I like to call a bunch of jobettes since I left higher education full-time. And I do that so that I can really focus on Nic's present and future, so that I can learn and grow a bit, and I'm gonna still make a little money. Of three of the jobs that I do now (laughs) have to do with adult life or people with disabilities, including the Our Parallel Paths podcast. The fourth job where I teach a grad course in assistive technology, uh, that's maybe a little more loosely related. And the fifth jobette where I plan the funerals for my church, I'm gonna say that one is not loosely related.

Geralyn Arango Deeley (03:04):
Anyway, Our Parallel Paths podcast is produced by Networks for Training and Development, who have been with us on our family's parallel path forever. I've consulted for Networks, I've taken courses with Networks, and Networks have supported me and mine as we charted Nic's path, literally. Like the path I talked about for you making for yourself in the Paths episode earlier this season. I've been on Networks' Healing Circle podcast, which is my holistic side. And now another wonderful opportunity is poised to happen through Networks that I wanna share with you here today.

Geralyn Arango Deeley (03:41):
Long story short, I wrote a book, a memoir called What Would Nola Do? What My Mother Taught Me About Showing Up, Being Present, and The Art of Caregiving. It was published by Small Press in 2014. People bought the book, people bought the e-book. I presented at conferences, I signed books. I even saw myself (laughs) on a billboard on I95 for a caregiving symposium at the university, and I almost, honest to God, hit a guardrail. But the little publishing company folded, and the run of What Would Nola Do? ended. The story behind it, however, did not. This memoir about me and some people I love, and the message is still current today because caregiving touches all our lives.

Geralyn Arango Deeley (04:31):
And I'll say it again because I thought it was said so well. In the words of Rosalind Carter, you either were a caregiver, you are a caregiver, you will be a caregiver, or you will eventually need a caregiver. So the 10th anniversary epilogue edition of What Would Nola Do? is coming out. What I wrote then is still relevant to those of us on the parallel path in the 2020s, even though 10 years has passed since the original memoir.

Geralyn Arango Deeley (05:05):
What Would Nola Do? opens up with Nic and his sister Courtney in their teens. Nic is finally enjoying better health after years of respiratory, gastrointestinal, developmental, and neurological challenges, and now he's entering puberty. My mother, Nola, after whom the book is named, always charming and wise, always large and in charge, always a character. The one who to ask myself in this situation, "What would Nola do?" My mother is beginning to manifest signs of dementia. One more person, my dear friend James, the priest who baptized my children has just had a car accident, and has sustained a traumatic brain injury and is sent to a nursing home at 59. Not as old as it ... (laughs) I, I used to think it was old. Now I don't.

Geralyn Arango Deeley (05:59):
Um, the challenges of intellectual disability, the challenges of dementia, the challenges of a traumatic brain injury, three very important people in my life. So I'm now in this book, I become a member of the sandwich generation, as I take care of my mother, as I take care of my son, and to add lettuce and tomato to the sandwich, I'm trying to support a friend as well. But as I come in and out of their days trying to help them advocate for them, be there for them, I start to notice that the way I'm showing up for them has a lot of overlap.

Geralyn Arango Deeley (06:38):
I'm supporting my son Nic and using what I learned to help my mom, I'm supporting my mom Nola and finding that it helps me when I'm at the nursing home with James. So there's all these combos. And I can keep going, but you get it. Lots of combos going on. If I'm willing to pay attention, they have a lot to teach me about this thing called caregiving, and how to be, or try to be, a better caregiver. So I write as my life and theirs goes on, kind of processing it all, because writing is how I process. And then I, I start to think, is there something there that I want to create beyond a journal for myself?

Geralyn Arango Deeley (07:18):
You know, maybe you caught the episodes on journaling in season three. I believe in journaling. And I'm seeing something as I write that maybe needs to be shared with people like me who are in these situations, the caregivers, the people in the sandwich generation. And I need to create 'cause once an academic, always an academic. So I make it my mission to learn about the publishing trade, how to submit, who I need to move the needle. And after lots of submissions to publishing houses, and lots of rejections, I end up with an author Bill Stillman of Silvercourt Press, who takes those thousands of words that I typed late at night when everyone was in bed, and he sees their connections as I do. And Bill helps make the little experiences make sense together. He helps me weave them into a memoir, shares what I learned from it all, and What Would Nola Do? is born. A story of Nola, my larger than life mother, Nic, my beautiful challenging son, and James who I think of as my brother from another mother.

Geralyn Arango Deeley (08:26):
So like I said, 10 years passed since the initial publication of the book and it's out of print. But again and again I find myself wishing the book had gotten a little more love, a little more energy than I was able to give it on my own because it was written with insights straight from my heart and a little of my head thrown in, as I mix in wisdom from others, at a challenging time that will likely never end. And I thought that my story had an important message for people like me, people like you, on the caregiver part of our parallel path. Almost immediately after publication and distribution of What Would Nola Do? people would say to me, "So when are you gonna write your next book?" And sometimes the podcast feels like it is the next book, but a conversation with Networks about Our Parallel Paths led to another about the possibility of reissuing What Would Nola Do? with them.

Geralyn Arango Deeley (09:21):
So back to the laptop I went to update, in an attempt to provide an epilogue sharing what's happened since the book's initial publication to bring it into 2024. And if you read the book, you'll see a lot has happened in my life as well as that of Nola, Nic, and James since the first edition of What Would Nola Do? came out. For this episode of Our Parallel Paths, I'd like to share a few of the many lessons I learned from Nola, Nic, and James, because I think they continue to apply on our family's parallel path.

Geralyn Arango Deeley (09:56):
When I think about caregiving, I think about something I offer, something I provide to someone, but they also give something to me and that's the magic. The memoir itself, What Would Nola Do? What my Mother Taught me About Showing up, Being Present, and the Art of Caregiving, 10th anniversary edition with epilogue, will be available in January of 2025. But for now I'd like to share six of the many caregiving lessons from my memoir that continue to help me on Nic's and my parallel path. It's my hope that these lessons resonate and can help you too.

Geralyn Arango Deeley (10:39):
So some of these lessons that I, are what I continue to keep in mind, as I continue to support my now almost 27-year-old son who works in the community, who lives in the community, who has friends, has a beard, and a fondness for hair care, but also has challenges that I sometimes lose sight of in the day-to-day. Challenges that I can better support him with if I just notice him and take time to reflect, like a second, instead of react, 'cause that's what I sometimes do. Challenges that I need to consider in myself, especially when things aren't going so well. I, uh, will share with you that there are no World's Best Mother awards on my shelf. So as I share these six lessons today, I wonder, have you noticed and reflected even for a second on any of them on your parallel path?

Geralyn Arango Deeley (11:33):
I'm gonna say them first as I'd say them to my Nic. So Nic, number one, the bathroom is an important place. Number two, disability does not leave you when I do. Number three, advocating for someone else is touchy business. Number four, loneliness is the biggest disability. Number five, what's normal anyway? And number six, so what can you do for me? And a little detail there for you Nic. Number one, the bathroom is an important place 'cause for you and me, Nic, the bathroom, that place too small for the two, or three of us, was all about control.

Geralyn Arango Deeley (12:27):
I learned a lot in the bathroom. (laughs) That sounds weird. Let me rephrase. In the years it took me to help you to be independent in the bathroom, I thought about how this intimate act is something that at first needs guidance for all of us, but eventually most people don't need that guidance anymore. Being in the bathroom is private, and you make very personal choices in there, right? What is it like to know you can't do it alone? Or in the case of James, who is also in the story, you can't do it alone anymore. Is the help welcome when I offer it? When is it embarrassing? And how do I show the respect you deserve, especially in those moments when I am so over this and so are you? How do I get over hovering, coaxing, "reinforcing" quote/unquote, and letting you control yourself even if it doesn't go perfectly? I never aspired to be good at being with other people in the bathroom, but there we were.

Geralyn Arango Deeley (13:40):
Number two, disability does not leave you when I do. Nic, you don't have Down Syndrome just when you're being stubborn, just when you're being the level of charming that people stereotype about Down Syndrome, you don't have communication issues just when I don't understand you, but when the world doesn't understand you. Help me to remember that so that I can be patient, and so that I can help you find ways to be understood. You have Down Syndrome 24/7 when you're challenging. You have Down Syndrome 24/7 when you're frustrated. And you have Down Syndrome 24/7 when you're fabulous. It's just a part of who you are.

Geralyn Arango Deeley (14:30):
Number three, advocating for someone else is touchy business. Nic, I have had to advocate for you since I knew in utero that you would have Down Syndrome. I have advocated in school when expectations were low, and on the playground when kids were unkind. I've advocated with doctors who aren't listening to us, with systems that limit us. How do I know when I'm advocating for you, and not just angry at the many systems that sustain us? Or that I just like the sound of my own voice? Nic, I mean to advocate for you, I have to keep in mind and look for the things that you tell me you want and need in whatever way you tell me. I'm advocating for you.

Geralyn Arango Deeley (15:24):
Number four, loneliness is the biggest disability. I maintain that no one really has to be brilliant in this life, but you do have to have connections, Nic, it is sometimes harder for you to sustain the connections you've made. And I'm talking mostly about like friends, and sometimes even extended family. You don't drive, you've only just gotten experience in public transportation, and you need help with that. Thankfully you have the phone, but you have to run just about every party idea by me so that I can make it happen if I can. But it's worth it. I hope your friends and your extended family will sustain you long after I'm gone. I hope that you will stay connected.

Geralyn Arango Deeley (16:14):
Number five, what's normal anyway? If I think about communication, I think you are hard to understand, but you want to be understood. Isn't it normal to want to be understood? If I think about behavior, and I think about you getting angry, isn't anger normal? On that one, I do have to kind of s- put a qualifier, in that I think it's about how you express the anger, and we're always working on that. If I think about health, I think about the possibility of Alzheimer's for you. I think about pre-diabetes, I think about your weight. I think about life without gluten. But are those concerns unique to you? If I think about Down Syndrome, I notice all the ways it looks on people we know, people we see in the media. That Barbie doll I bought at Christmas. So what's normal? Maybe no two people wear normal the same way, and maybe that's what makes it normal.

Geralyn Arango Deeley (17:22):
Finally, number six. So what can you do for me? Nic, I'm still unlearning the overkill of your dad's and my response to your many, many health issues as a young child. I'm still relearning it 20 years later. When you had a a seizure two years ago, I regressed right back into that overkill panic mode. I did. But wait, even though health isn't a given, here we are right now, and you're living in the community. You're working in the community, you have a fuller calendar than I do.

Geralyn Arango Deeley (17:57):
So how about I enter the present with you? Hmm? How about I let you take some of the work off of me? How about I say yes more often when you offer to treat me to lunch? How about I show you where the vacuum is when you say you're gonna vacuum the first floor for me at my house? And actually I do that, you can vacuum any anytime you want. How about that leaf blower that we got you for Christmas? Yes, I know, you wanted it though. How about that leaf blower in my backyard? And that glass of water when you saw I was all curled up on the couch feeling sick? Thank you. Thank you for what you do for me.

Geralyn Arango Deeley (18:46):
So anyway, What Would Nola Do? contains a total of some, I think, 30 lessons in the art of caregiving. What I learned from my mother as she developed and wrestled with dementia, my friend James, as he learned to live with a traumatic brain injury, and my son, my Nic, who continues to teach me and challenge me as the adult he has become.

Geralyn Arango Deeley (19:09):
I hope you'll check out my story on Barnes and Noble, BookBaby, and Amazon, and that it'll give you something you need for your path. And I thank you so much for spending time with us on today's episode of Our Parallel Paths. I hope you'll like and follow the Our Parallel Paths podcast. Share the podcast with family and friends, and I really hope you'll return to listen and learn from more stories of people like you and me, and our loved one with a disability on Our Parallel Paths. You're not alone. I'd love to hear from you. Feel free to comment, to rate the podcast, to join our Facebook group. I'll see you next time. Take care.