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Caregiving in Autism and Aging: Finding Joy, Challenges, and Advocacy with Dr. Kerry Burnight · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:01
  Speaker A: Hi, everyone. Welcome to another edition of the Inchtones podcast. Today I have with me a friend of mine I'm very lucky to call a friend, Dr. Carrie Burnight, who is, I believe, America's gerontologist, let's be honest. And the author of a book that will be released in August called Joy Span. And Carrie is someone who has leaned in to not only her life's work, but has leaned into sharing the joys of her life's work. And, Carrie, I'm just so thankful that you're here with us today.
• 0:33
  Speaker B: Grateful to be here. I've been looking forward to this time with you.
• 0:37
  Speaker A: We share a lot of things, and you are a big sister to me in terms of maybe some more deeply feminine, primal motherhood things. We also share something that not many share, and it's that caregiving is a huge part of our lives. Talk to me about being the gerontologist on social media, sharing about your mother's 90s, living beautifully through her 90s, and your role as daughter, but also caregiver to her.
• 1:10
  Speaker B: Love to talk about caregiving because you will definitely in your life either be a caregiver or need a caregiver. So it is something so. So universal, and at the same time, it can be so challenging and then unexpectedly so beautiful. And to have two such seemingly opposite sides to it, of, wow, this is hard. And, wow, this really means something, especially when I look back on these journeys. So, yeah, as a gerontologist, you have the privilege of watching people walk these journeys. And I am blessed with my mom, who is 96, and she, you know, everyone is so unique. Like, her path is very different from other people's path. And the most common thing is when I'm at a social event, people will quietly take me aside and say, you know, I want to tell you something about my family, but you should know they're weird. And I always say, guess what? Every single human says that, including me.
• 2:25
  Speaker A: Yes.
• 2:25
  Speaker B: Yes.
• 2:26
  Speaker A: Like, we are. We're all. We all are.
• 2:28
  Speaker B: That's part of.
• 2:29
  Speaker A: Because if we weren't, that we'd all be these clones of each other doing the exact same dance of life. Like, that's. That's not interesting at all.
• 2:37
  Speaker B: Yes, exactly.
• 2:38
  Speaker A: Do you feel like in being a gerontologist and witnessing the aging process and witnessing your patients as they age, but the family members that come in to support the directives that you have, and I just. I think witnessing is such a huge part of the caregiving experience. So you straddle both. Right. As the caregiver but also as someone who has professionally done this, as a provider, do you feel like both play a role in how deeply you lean in as your mother, as a caregiver to your mom?
• 3:13
  Speaker B: Very much so. And so I think we today can have so much fun exploring how multifaceted it is, particularly like, you know, caring for children who have great needs. And then a lot of times we have illnesses and things that we carry, and then our parents have things and then mix it in with the family dynamic. And I think one of the unifying factors in this is issues of autonomy. So I would say autonomy and dignity. Right. Because the initial thing that everybody goes to is safety. And it's understandable, like, particularly with kiddos, where you think this is life or death, whether I am doing this. And then also thinking, how can we enable people to be. Have as much autonomy and dignity as they can in situations that often are profoundly awful and humiliating?
• 4:17
  Speaker A: Right, right, right. Like. Like, what environment can we make so that the things that keep them safe are enough, organic or organic enough to have them feel the autonomy, Truly, truly feel autonomy and have agency? Right?
• 4:32
  Speaker B: Yes. And what I've learned from you, Sarah, is that a lot of times enabling the people that we are caring for to have the maximum autonomy and dignity and joy requires that we go against the norm of what people from the outside looking in see as okay or right. And I'll give you an example, and I know that would be great, literally thousands of examples in your own life. But my mom lives in a house with steep stairs. She's 96. She has congestive heart failure and double knee replacement, double hip replacement. So I ran into someone who said, I just feel very surprised that, you know, you allow your mom in her condition, to be alone in her home. And it seems you of all people wouldn't be doing that. And I know what she was saying, and I don't agree with it. And for me and for my mom, it is not right. And I'm going to have to be able to release that and say, you know, thanks for your input, and then just be able to let go and move on, you know? Right.
• 5:48
  Speaker A: Like. Like, like that choice that you had, you and your mother was probably not taken lightly at all. And to, I think the dismissal that you and your mom and probably the whole family have discussed about that situation, to minimize that with a comment, that's one of those things that I, I absorb because I. I can only imagine, you know, what that projects from someone else. I think that's why this conversation is so cool from your to my end on caregiving is that it's so unique to what your family and your needs are. And you are, you are a product of your mother. Like, your mother birthed you. Like, so there is part you are your mother, you know, and you can't run from that. And so your decision making process, how you process it, how you decided that, trust me, you know your mom. The only person that knows your mom better than you is her.
• 6:43
  Speaker B: Yes, that's your mom. I listen to her. And within every family, within caregiving, you definitely will have disagreement. Like, that's one thing. Every family, we are going to have disagreement. And when it comes to the most important person, it is the person that we're talking about. It is the person living with extra vulnerability. And so, like in my mom's case, she doesn't have cognitive impairment. So, you know, that's one factor. A lot of parents, older adults, if you live long enough, it's not a normal part of aging, but it is much more frequent as we get older to live with some cognitive impairment. And then too, it is critical to listen to the older adult because people, it's not an all or nothing endeavor. Like, you can still ask, you know, let's, let's still talk about it and we will still, as a family, disagree about it, but like, we're trying to bring these things out from the darkness into the light and correct. That's.
• 7:47
  Speaker A: Well, that's the, that's the, that's the, that's the part of being human in all of this. Like any human interaction, essentially. Someone brought this up to me and I was like, that's hard to absorb and hard to say, but you're right. Every human interaction is conflict. Everyone, even ones like you and I, who, like, all I want to do is listen to you talk all day and hear about your life, but it's still in conflict with the choice of my time. The choice of your time. Like, there's conflict everywhere, just with humans interacting. And so the sacred nature of caregiving and discussions around it, it's like emotionally charged. And it's still conflict. And you are the daughter of someone. You have lived your entire life as Betty's daughter, your entire life. Right. You're not running from that fact.
• 8:34
  Speaker B: That's so true. And then I think people might be listening, thinking, huh, what do I do when I so disagree with my person that I'm caring for? Like, you know, an example I can give with my mom is she was really deathly ill in the hospital for a Month with C. Diff, which is when you have an intestinal overgrowth of bacteria. And it's very awful in many, many ways. And so she was know so very ill. And so I couldn't imagine how she could get up the stairs. So without asking her, I brought in a hospital bed downstairs. And I was so pleased with myself because I thought, oh, this is so nice of me.
• 9:17
  Speaker A: And she love that I did.
• 9:19
  Speaker B: Yeah. And then she got home, walked in the door, and just was crestfallen that she did not want that ugly, awful hospital bed. And I did that without asking her. And she said, you need to have it taken away tonight. I cannot stand looking at that. You. So it's not funny.
• 9:39
  Speaker A: But she's lived her. She's alive, has lived her life. As much good intentions as you had, as good as you felt making it, you still had to reorient to your mom.
• 9:50
  Speaker B: I did. And I realized all of a sudden, like, huh, I'm in the wrong on this one.
• 9:57
  Speaker A: It's okay. And we'll move on.
• 9:59
  Speaker B: Exactly. So we just the same day had it taken out. And we bring it up from time to time. And when we start getting to that conflict again, my mom will say, this sounds a little bit like the hospital bed, doesn't it?
• 10:10
  Speaker A: I think of right now, me and my love for the holidays is that you have got to get a hospital bed ornament for your Christmas tree.
• 10:16
  Speaker B: Yes.
• 10:17
  Speaker A: Because like this, this will turn into something that's light. That's what life is all about. Is it taking something that taught you a lesson and. And being able to reflect on it and go, oh, my gosh. Yep. All right, well, that happened too.
• 10:31
  Speaker B: And so there's that, like you said, the innate conflict in person to person. And then there's the other innate conflict that is. And that's within ourselves.
• 10:42
  Speaker A: Absolutely.
• 10:43
  Speaker B: It's important for every person to really take in the fact that there is not a caregiver in the history of caregiving who ever thought, I really am nailing this.
• 10:54
  Speaker A: And I. I'm crushing this.
• 10:55
  Speaker B: I am doing such a very good job.
• 10:59
  Speaker A: Right.
• 10:59
  Speaker B: Every day we have this conflict of I'm supposed to. Everyone says to take care of myself, and I'm not. And then everyone says, well, don't leave them alone for this second. And so it's just this inside of ourselves.
• 11:14
  Speaker A: Totally.
• 11:15
  Speaker B: As well.
• 11:16
  Speaker A: Absolutely. You've said something and I. It made me think of an inflection point that crosses over to someone like me, of a mother of profoundly autistic children who will require lifetime care One on one care. Do you feel like there's an inflection point in some patients of yours or an older generation that is needing care? Do you think that something switches? There needs to be someone actively a part of their lived experience. One, one on one.
• 11:46
  Speaker B: Yes. Yes. That's very insightful. And it's a lot of, usually it's a lot of little things like huh, and then there's the question of who is responsible for that. Is that my brother because he lives closest, right? Is that like, is it me? Is it, you know, and, and then also the older adult is navigating that as well, saying, you know, wow, that was, was rough that I didn't get some bills paid or that I, you know, fell and there wasn't anybody around to get up. And I think for your incredibly heroic, amazing community of people caring for other of their children. And then this whole question of oh my gosh, someday or maybe even now when my parents starting to show these little signs, what does that mean? And I think allowing ourselves to think about it so that maybe families could have conversations where one could say to their brother or sister of my profoundly autistic children will be most likely in my care for our lives. And there will come a time when mom and dad, X, Y and Z. How do you see this? And are there financial resources so that we can hire someone to help with mom and dad? Are you comfortable with that? Are they comfortable with that? And, and how about also conversations with your older parents or grandparents also saying gosh, you know, I have learned.
• 13:27
  Speaker A: What does that look like to you? Like what does that look like?
• 13:29
  Speaker B: Yeah, it's not weird or morbid to think about it.
• 13:33
  Speaker A: I think the mortality of us all unfortunately has a film of deep sadness around it. And I hope that conversations like this allow for the humanity of it all to rise and being their. There are some deep silver linings because it, it actually requires such connectivity that I think in so many ways, while I can be shocked that I'm still putting on pull ups on a 10 year old daughter, I'm also so deeply aware that I'm embedded in her life in a way that other mothers of typical 10 year old girls are not. And again, it doesn't take away from the exhaustion or the absolute like, you know, life trajectory it's taken me on that I never would have chosen or anticipated. And yet I think of what it's giving me is connection that I, that that a lot of typical paths on parenting don't take. Neither one is better. Right? Like I think all of us sign up for parenthood. And as we age and sit in the middle place of, like, having our own kids, being married or with a partner or middle life and then aging parents, we never think about that until. Wow. There are. There are beautiful parts to both of it. And it's not easier or harder. It's just really, wildly different.
• 14:52
  Speaker B: Yeah.
• 14:53
  Speaker A: As a society talk more about mortality or deep special needs. Like, it's not so bad. It's really hard, but it's not so bad.
• 15:03
  Speaker B: Yes. It's so beautiful. And it's such, like, a light beautiful.
• 15:08
  Speaker A: But it's brutal, too, Carrie.
• 15:10
  Speaker B: It's brutal, too.
• 15:11
  Speaker A: I love the beautiful parts, but I have to. I realized that I had to start sharing more about the really tough parts, too. Yes. And I think that that's maybe, you know, for. Where do you. Where do you find that within your own sharing on gerontology and the population that you serve?
• 15:28
  Speaker B: I love the both. It's so varied. Both of times, when you're on your knees alone, sobbing, with poo poo all around, there's some really super.
• 15:46
  Speaker A: It's primal. It's primally.
• 15:48
  Speaker B: Yeah. And you think, like, I can't do it. I can't go on. So. And it's real. Like, it's.
• 15:54
  Speaker A: Yes.
• 15:55
  Speaker B: It's not.
• 15:56
  Speaker A: Yeah.
• 15:57
  Speaker B: And if it was only that, we could be honest to say it is only that. But the honesty isn't. It is that, and it isn't only that. Because there are these moments of purpose and spirituality and connection and realization that all of our time here on earth is limited. Every single one of us is going to pass away. And that all of the stuff that we thought was important, it really. A lot of it isn't important. And a lot of the stuff that seems like a pain in the rear is the important stuff. How these can exist together is. It is emotional.
• 16:42
  Speaker A: You know, it's the orchestration of life. And the. And the heaviness of it can get so daunting. And then I think, is that just the conditioning of what Sarah Kernan, as just the one person on this earth was conditioned to believe? And then that got ripped away, and then it changed. It's like, I know that while I might be unique in it, I'm also not unique in the hard and what that looks like and how deep I have to rely on childcare for my ability to do and even talk about the hard. Right. Yeah. And that's one thing that I'm sure you know better than most, is that none of us are getting out of here alive. And I. I sort of love that. I love the universe, the universality of that.
• 17:22
  Speaker B: You know, as a gerontologist, I go to a lot. Lot of funerals and celebrations of life.
• 17:29
  Speaker A: Yeah.
• 17:30
  Speaker B: And I feel lucky about it because, like, every time it reminds you not one person got out of here unscathed, not one person, you know, makes it, like, to this finish line of like, oh, wow, you know.
• 17:49
  Speaker A: Oh, yeah. Like, here we go. Like, audios, everyone. I mean, maybe someone does, but I'm sure there's one person on the planet that does that before we wrap up. Because this is all just. It resonates so deeply. It is so apparent to me how it blends into my own life. And our roles are so different. Where do you find your daily inspiration to desire to share how you do desire to write about this? Because I do think that our country specifically is craving Joy Span. Like, literally. They don't. They might not know it, but they are craving this. And they don't want to talk. So it's like that tension. They don't want to talk about it at all. But, gosh, if we can get Joy span in the hands of everyone, it doesn't matter. Like someone who's 42 as a caregiver and someone that's. That's. That's in a situation like, similar to you, it's so important we need this perspective to get out because I think it's such a gift.
• 18:48
  Speaker B: I feel like there's so much about longevity, about how long we'll live or even how long we'll live in good health, which matter. But a long life doesn't mean much if you don't like the quality of your life. So it's like thinking about, like, what is quality of life? And something that is a guiding principle for me is that I think a lot about the worst of the worst of the worst that I know of. Although I'm sure they're tied for the worst. But I think about German concentration camps. I think, you know the work of Viktor Frankl where he said that they can take everything from me except for my spiritual freedom. And so I think, like, even in.
• 19:30
  Speaker A: I'm like, laughing so hard because you're saying that. And I'm like, it's on my shelf, like, right now, is it?
• 19:34
  Speaker B: You can't take my spiritual freedom. So at the times when we're at the rock bottom and we will be to think will. Yeah. So regardless of what comes our way or our family's way. So, like, if one, as a friend was recently diagnosed with als. Right. Like, that's a tough one. And you think it can take everything. And then I think, like in my mind, accept spiritual freedom and that doesn't diminish the very real pain that there is. But the fact that there is this retained peace is really heartening to me. Like, that's the thing that gives me a lot of hope because then nothing, not even like when my daughter was diagnosed with a brain tumor. Right. It took me off my feet. Of course. Then I thought, like, there is still this spiritual part of life and I'm so grateful for that.
• 20:33
  Speaker A: I think that's where I hope that mothers and caregivers that have similar paths of mind to whether it's for a minute every day or even 15 seconds. And yes, that's why I make these podcast episodes so short, because I know that some of these women that are like me, I have eight minutes sometimes. This is about as much. I've got paperwork in the car during a 30 minute therapy session and I'm going to give myself eight minutes to press play and it's going to be at 1.5 speed. So realistically, like only a 10 minute chunk. If you can get really quiet with yourself, you are able to find that spirituality in the choice that is that or the, the, the event and the children or the parent that is drastically creating a situation for your life that you never thought, ever thought was going to be reality. And acknowledging it and moving through it is, I believe, the only way to rise.
• 21:27
  Speaker B: It is. And it's like when you do, in those little moments, it's so beautiful and it's so beautiful. Giving the world like what you are doing, Sarah, and what your listeners are doing is showing their kids, both kids who are typical and kids who are walking with different things. You're showing that. And there is, it is so honorable and so beautiful and you know it. And even when the world doesn't see it, like, it's okay.
• 21:54
  Speaker A: Yeah, it's okay.
• 21:55
  Speaker B: Because it is the reality. And I admire you so, so much. And I admire all the caregivers, all of us, so much. Yes.
• 22:03
  Speaker A: Well, thank you. We could obviously talk for 37 hours and not probably do our sorority girl like, oh my God, get your jammies on. Like, we would totally do that. Be like, we'll come back to keep recording. Thank you so much for the work that you, that you are doing in both your personal life and your professional life. And I have to tell you that every time I go onto my Amazon account because I've already pre ordered the Joy Span. It is always, you know, it says coming orders. It makes me so darn happy because it's always the first one I get to see. I mean, again, Amazon lady over here who wants to drag two autistic non speaking kids to the grocery store like so we do a lot of ordering around here and it makes me so happy because I see it every day and it's such a gift to even look at the COVID I'm so happy.
• 22:46
  Speaker B: Because it seems to be really resonating with people of all ages. And so people like where it's never too early to start ourselves on this path of, of maximizing joy and it's also never too late. And so I'm having a lot of people giving the book as a gift on. You're turning 30, you're turning 40, you're turning 90. Yes, yes. Grateful. And I hope that it, it sparks conversations of how to maximize joy in all the, all the hard and good and lovely and tragic parts of life.
• 23:18
  Speaker A: And everything in between.
• 23:19
  Speaker B: Yes.
• 23:20
  Speaker A: Well, Dr. Carrie Bernight, thank you for being you again. I mean, listen, I hear someone probably about to bust down a door. I've had to replace doors around here, so it's not an uncommon thing. Thank you very much for everything. Till next time on the Inchtones podcast.