Geralyn Arango Deeley (00:12):
Hello, family member, let's talk today about what we can do to support the siblings, the brothers and sisters who may take the helm after the parents are gone. Hello and welcome to season five of Our Parallel Paths: A Future for My Loved One With a Disability... And for Me. My name is 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, let's nurture and support ourselves as we nurture and support our loved ones with intellectual disabilities. There's more than one path, more than one future to talk about, and that's why we're here.

(01:07):
So let me start today with some data. According to that data from the Sibling Support Project, there are over 32 million people who have cognitive disabilities and/or mental health concerns in the United States in addition to those who have special health concerns.

(01:26):
Most of these people have typically developing brothers an- or sisters, or both. I would like to start, or maybe continue, thinking about those brothers and sisters because these siblings are too important for us, especially parents, not to think about. If, only because brothers and sisters will be in the lives of our loved ones with intellectual disabilities likely longer than anyone, likely longer than our, their parents. So I guess I'm especially talking to parents on today's podcast, or to those who act in that parental role. Brothers and sisters will likely, hopefully, be around after parents are gone. And if siblings are provided with support and information and an opportunity to talk, to ask questions, to learn, to be acknowledged for all of what they feel about their role in supporting their brother or sister, siblings can help their sibling, so many uses of that word, um, to live full and dignified adult lives while they live their own full and dignified lives as well.

(02:41):
There is an overlap of concerns here, parents and, and the, and siblings, the children, throughout their lives. Brothers and sisters of people with disabilities may really share the concerns that their parents experienced to a greater or lesser degree. Including a sense of isolation, a need for information, feelings of guilt, concerns about the future, and how caregiving demands influence their lives, their marriages, their relationships, their own careers.

(03:15):
Brothers and sisters also face issues that are uniquely theirs, as I understand it, including feelings of resentment, of guilt, peer issues, embarrassment and pressure to achieve. And despite important and lifelong roles that siblings play in the lives of their brother or sister with a disability, we parents often don't know how and when to open up the conversation about what happens when we are gone. I dare say it is not a question of if to open the conversation, it really is how and when.

(03:54):
Now my son, Nic, has one sister, three years older than he is. A half-sister out there somewhere who's not involved. And three step-siblings, since my husband and I married eight years ago. But my spider senses tell me that it will be his sister Courtney, Izzy to friends, who will be at the helm of supporting her brother and helping Nic to continue to access the good things in life, friends and family, home, work, community, and that sense of belonging, when I'm gone. Courtney and Nic's father, Al, died in 2014, as you may know if you're a regular listener. And though my husband, Michael, is a tremendous and positive presence in Nic and Courtney's lives, and though I know he won't just pack up and move back to New England after I'm in the ground or in a jar, the buck has stopped here with me since 2014.

(04:52):
I am the surviving parent. I am the power of attorney. I am the common law employer of the staff. I'm even the landlord. Courtney will likely succeed me, to some extent, in some or all of those roles, and maybe more. But me, I am blessed with people to bounce ideas off of, to share worries and joys with, to learn from. Certainly my Michael, but lots of other friends on the Parallel Path, and I'm especially looking at you Marybeth, Diane, Sonia, and the rest. I have our supports broker, Bradley, and my supports coordinators, Carolyn and Jessica, who helped me dot the I's and cross the T's so the funding continues to flow. And as I'm recording this, I nervously hope that the funding continues to do so. Perhaps you're feeling that way too. I have organizations that I belong to, conferences that I've attended and even presented at, websites I refer to, Facebook pages I follow, and a, a bit of professional background in it all as well.

(06:00):
I get the great privilege of presenting a podcast to try to address questions you and I have along the path, so I learn for a living too. I've interviewed families on our path. I've interviewed siblings like Suzanne Munch and Eric Goll of Empowering Ability. Emily Holl of the Sibling Support Project and my own Courtney chatted on an episode a few seasons ago on the podcast. And I do wanna keep interviewing siblings so that I can get a better idea of, an understanding of their perspectives. I'm even calling this episode part one because I think there is a lot to talk about and I feel the need to revisit this topic for future episodes as well. But back to what I'm saying here is that what I'm hearing as I speak of what I have is that over time I have made connections to people, connections to resources.

(06:54):
I have accumulated these connections (laughs) like a career since 1998 when Nic was born. And how do I pass this "career" onto my daughter who was born just three years before Nic? My daughter, Courtney, married with two young children of her own, living about an hour away from me out of state, an hour and a half away from Nic. My daughter, Courtney, in the throes of building a life of her own. How can I help Nic's sister to support her brother while she builds a life for her own family and for herself? And I guess the first thing that I will always wonder is, you know, how much is too much to ask? And is that a real question? It makes me think back to my own experiences years ago when Nic was younger and my mother, Nola, had dementia. I thought about it so much that I wrote a memoir about it called What Would Nola Do?: What My Mother Taught Me About Showing Up, Being Present, and the Art of Caregiving.

(08:01):
I do remember my mother saying that she was afraid she was a burden. And I hated when she'd say that, but I understood why she might. Her dementia called on me and my two siblings to support her in ways that were sometimes difficult, sometimes challenging. Especially with Nic in a rough adolescence, tearing up the scenery, and my Courtney who had her own teenage struggles. But I don't think I ever thought of my mother as a burden. Supporting her was just what we did. And as I say this I do hear what made it all a little easier for me, I had two siblings. I'm the middle child. And though we contributed differently, we were all on board each in our own way. Courtney is one of only two, no other typical sibling is gonna be on board with her. And her mother isn't getting any younger either.

(09:05):
But I will say from things I've read, parenthetically, having a lot of siblings doesn't necessarily guarantee anything. Does it mean everybody's gonna be on board? Maybe, maybe not. Um, anyway, I heard someone call what Courtney is in, or will be in, not as the sandwich generation like I was, but the club sandwich generation. An extra layer there. Nic is a piece of bacon, I don't know. But the possibility of taking on my vision, and Nic's vision, and my jobs that make it all happen, if that's what she and Nic want when I'm gone. A common-law employer of a staff of what is currently seven people, landlord, advocate, finance guru, medical, medical concierge I guess, activity planner, future planner, and maybe, hopefully not, something of a caregiver to what will be her aging mother. I have had years to learn, and I'm still learning. It's a lot to pass along.

(10:21):
The second thing I wonder is what do I need to share with my daughter, Nic's sister, and when and how much? Courtney and I are having these conversations here and there, but I wonder what's enough, what's too much, when is the, when is the big sit-down. What Courtney has said to me, and I appreciate her honesty, is that she is not sure that she can do exactly what we're doing now, what it takes to help Nic have a pretty nice life. But I understand that. And what I've come to realize, as I hear that, is that what we're doing today is what works today. It may change five years from now, 10 years from now, tomorrow. Life is not static for anyone. I hope that the realization that things can and so often do change is a comfort to her and a reassurance to her, even as it is a challenge to all of us. I do hope to live a long and healthy enough life for this to be a conversation for a while longer, and not anything much for her to do besides love her brother as he loves her.

(11:36):
What will Nic's life look like in 10 years, in 20, in 30? What will Courtney's life look like? What will my life look like? Change happens. I did tell her that whatever she and Nic do decide after I'm dead, what they can and can't do, what they want and don't want to do, I'm gonna be dead so all I can say is that I'm gonna have to trust that the love between them will be, still be there and will still guide what happens next. What I can offer now is what I'm trying to do to support my son and my daughter so that when I'm gone, and I do intend to go first, there will be, you know, decisions to make certainly, but hopefully not too many shocks and surprises. And today, since I have no guest, it's just me, dear listener, I am hoping that you might share some of what you're doing in the podcast comments or on our group Facebook page. I, I really hope you will 'cause, like I say, I always have questions and this question is huge for me.

(12:47):
So what I offer, what I think that we've got happening that I hope is something that they can build on, is that, one, Nic is out in the world now. Nic lives in the community with support. If I die first, uh, when I die first, it will be hard for him, but Nic won't have the additional trauma of having to move out of mom's house where he has lived, you know, for whatever number of years it takes before I die. Um, even though he will continue to need coordination of supports, I think of that as a plus. The other thing that we've got going on is that Nic is making money now. He has a salary and he has his social security as a disabled adult child. And this salary is at a competitive job in the community. He's been there four years and I hope it will continue to be a great source of, um, you know, certainly money, but fulfillment for Nic. He really likes his job.

(13:58):
The other thing we've got going on is the binder. The binder is happening now. My daughter, Courtney, said that she would prefer the information that I had been storing on a Google sheet, she would prefer it in a physical package. And that's actually kind of nice that way. So that's what she's gonna get. It has copies of my will. It has my power of attorney. It has a letter of intent. It has all kinds of account numbers, doctors, typical schedule that Nic is on, at least now. Lists of people who support him and their contact information. I'm still adding to this binder. And the, the real task is also gonna be trying to update it as needed, but it's in motion now. And she can look at it any old time and say, well, I need this and this. And the final thing I feel like we've got going on is that the conversation, what happens when you're gone, mom, has begun and the conversation is continuing. Even though, you know, there'll be a time for the big sit down perhaps, but it's starting.

(15:11):
I hope Courtney will feel free to bring up the need of conversation as well, and that we will both listen to Nic. Then I think about the things that are gonna be my next steps, because some stuff's in motion and some stuff needs to be in motion. And maybe this first one, hopefully it should be in the category of things in motion. I have to stay healthy, me. Um, because I don't intend to put anybody into this job at this point. They need to be decades from now, right? My parents lived to be, lived to be into their 90s. My mom was 90, my dad was 92. Um, I say this because that's good news, I guess, but my daughter does like to remind me that I am not allowed to die anytime soon. And I hope I can do this. And I have work to do on that to live a long, healthy life.

(16:13):
But my next, my next next step has more to do with Courtney. And I think about, wishing that she was connected in some way to other people who are even in some part of her boat. And I don't think she has anybody who's a sibling of someone with a significant disability. And I would love to help her connect with that, although it's out of my control somewhat. Um, but there are discussion boards out there and, and unfortunately she has been a little resistant to that. I hope she'll revisit it. I think that there is a need to learn about, more about what's out there. Maybe I'm not seeing the discussion boards, and she's not seeing the discussion boards, that really resonate. I don't know. I, I think about the Sibshop she used to do when she was young and, you know, maybe those sibs turn into people on discussion boards. I don't know.

(17:09):
The Sibling Leadership Network had a podcast that I subscribed to, but the podcast seems to have ended. So I'm gonna just keep going through all of it and listening to help myself and offer it to my daughter too, and say, you know, "You should maybe give this a listen when you have a moment." Um, and I hope that it's okay that a parent is listening to the Sib podcast. It's good stuff. The third thing I think about as a next step is helping Courtney by facilitating, and this is what I think about a lot, facilitating what in the disability world we call a circle of support. Facilitating hers, or one for both she and Nic, a circle of support, like, that brings in other interested people to help her and her brother with decisions that come along. And I don't have to be in a jar for that one, but something that we could be doing. Maybe this is made up of cousins or even a step sibling. I'm still thinking about this one.

(18:18):
And it's funny, much as my generation is interested in helping here, we need younger people. We need people who aren't gonna be kind of on their way out when I am. They need people who are younger, closer to their own age. And maybe I'll invite my, my peers to be the advisory board. We'll see. Um, the last thing I think about, and this probably should have been higher up, but do I bring in my son-in-law to the conversation? I know that Courtney, when she met Shane, said, "Listen, I have a brother with a disability and we come as a set." And what does that mean? You know, even before there's a circle, maybe this is the conversation to get his questions answered and to, um, you know, get a, get a sense of where he's at with things now that he's a father of two and, and life is very different than when they got married seven years ago.

(19:17):
So in, in conclusion, I wanna share two quotes that give me a reason to see the sort of universality of caregiving. The ordinariness of the caregiving role that I had and that my daughter, you know, although she's more of a club sandwich generation person, more that she's likely to inherit, uh, even though my experience was not adding in the sibling of a person with a disability. But these quotes, I like them. They give me hope that I can continue the conversation with my daughter and that I can find the words, that I can open my mind and my heart and listen and listen and listen to help my daughter's path be a good one as she supports her brother when I'm gone. And, again, this universality piece is a quote from 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."

(20:28):
And what I hear as I read that quote is that everyone, at some point in their lives, will either give or receive care. And, you know, sometimes w-we're all those things. This is a philosophy that underscores the universal importance and the somewhat ordinariness of the fact that we are all, at some point, caregivers or needing the care. And it's okay. The thing that's often lacking is the need for support systems for caregivers. They need to put themselves on the map, as I thought about too. Take care of yourself, eat your Wheaties. So that's my work, along with everything else. My work for me, my daughter and my son on our parallel path.

(21:19):
But another quote comes to mind, which is by, I hope I say this right, Rabindranath Tagore. And this quote reminds me again of the ordinariness of giving ourselves to others and finding that balance between worrying about am I a burden? Are you a burden? Is he a burden? And doing what I can to smooth the transition after I'm gone. And it really is about the love continuing no matter what. And this quote says, "I slept and dreamt that life was a joy. I awoke and saw that life was service. I acted and behold, service was a joy."

(22:09):
We will revisit this topic across the podcast. And I'm guessing you may agree by now, if not before, that there is a lot here to think about when we think about those who will inherit the, the role of caregiver to a brother or sister with an intellectual disability. This is stuff for my path and stuff for yours, perhaps, so let's journey together. Thank you so much for spending time with me on today's episode of Our Parallel Paths. I hope that you will like and follow our podcast and share it with family and friends. And I really hope that you'll return to listen and learn from more stories of people like you and me and a loved one with a disability on Our Parallel Paths. You are not alone. I would love to hear from you, so please feel free to comment, to rate the podcast, to share the podcast, and to join our Facebook group. I'll see you next time. Special thanks to Networks for Training and Development for producing this podcast.