In this episode, host Shoshawna Rainwater explores the emotional and psychological journey of caregiving for loved ones with dementia, inspired by Captain “Sully” Sullenberger's public diagnosis of Alzheimer's. She discusses how understanding the brain's responses, practicing self-compassion, and building support can help caregivers navigate this challenging path.
Links
Travellers to Unimaginable Lands by Dasha Kiper
Key topics
The impact of a dementia diagnosis on individuals and families
The neuroscience behind caregiver reactions and frustrations
The importance of self-compassion and realistic expectations
How to support caregivers with resources and community
The significance of understanding dementia as a disease, not a character flaw
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Interview Transcript
DISCLAIMER (00:00)
Hello, Hope Floats listeners. The content of today's podcast is provided for general information and educational purposes only, and does not constitute legal, financial, medical, or other professional advice. Always consult a qualified professional about your specific situation. Now, on with the show.
Shoshawna Rainwater (00:26)
You're listening to Hope Floats, the essential companion for the dementia caregiving journey. Whether you're navigating a new diagnosis or managing the complexities of late-stage care, Hope Floats is here to provide the tools and perspective you need to stay centered and even hopeful. I'm your host Shoshawna Rainwater.
As a licensed clinical social worker with over 20 years of experience, I've guided hundreds of families through this transition, but I've also walked this path, personally, as a caregiver for my own parent with dementia. I understand the clinical landscape of dementia, the emotional weight of caregiving, and everything in between. I'm so glad you're here. Let's jump in.
Shoshawna Rainwater (01:10)
It's been a minute since I've put out a new episode. This is episode 30. And if you notice things sound a little quieter today, it's probably because it's just you and me. No guest and no co-host today.
So I'm stepping into the studio solo for the first time in the recording history of Hope Floats. and when I say studio or the “stud,” as the kids say, I am actually coming at you from my kiddo's bedroom, which turns out to be a great sound recording studio because of all of the clothes on the floor and strewn about. Really happy to be back with you today. Excited to be back together and talk with you about something that's been on my mind.
You might know that recently Captain Chesley “Sully” Sullenberger and his wife Lori met with Robin Roberts, the co-host of Good Morning America, to share that Sully was diagnosed last year with early-stage Alzheimer's disease. And from where I'm sitting, this was a very brave thing to do, and was an action that his wife Lori helped encourage and make happen.
And she shares that part of her impetus for doing so was that it's important that we understand that this is a disease and not a character flaw. And those were profound words in my opinion, and we're gonna talk more about that statement later in this episode.
Shoshawna Rainwater (02:36)
Now when most of us hear the name Captain Sully, we picture the person who pulled off one of the most incredible feats in modern history. He made an emergency landing of an airplane that he was piloting onto, not into, but onto the Hudson River. This was called the “Miracle on the Hudson,” and it was really truly nothing short of that. It was truly a miracle, where, had the plane landed one or two degrees differently than it did, it could have been disastrous for the 155 people who were on board and survived.
And so Sully became known as a hero, a true hero. Unflappable, he was our national icon of composure under pressure. And if you listen to the cockpit report, cockpit recording. If you listen to the cockpit recording, it is unbelievable. It's quite remarkable how composed this person was. So when he and his wife Lori shared the news of his diagnosis of Alzheimer's, many, many hearts went out to him and to his wife, Lori.
And as someone who works with caregivers of individuals with dementia, I began thinking a lot about not just Sully, but also his wife and the experience that she might be having. When they spoke publicly about the diagnosis, Lori said something striking, but also kind of unsurprising to me, given the work that I do. Granted, there may have been more to the following statement that she made, given that things are often edited before they go to air. And this was a recorded interview. But nonetheless…
Shoshawna Rainwater (04:18)
Lori shared that she has, quote, “no idea what's coming with regards to Sully's disease.” And that she is taking it, quote, “one day at a time,” which strikes me as really understandable. And I wondered if, like many of us, Lori isn't even sure she wants to know about what's coming with disease progression. And if all she can do right now is kind of muster enough strength to wrap her mind around this life-changing diagnosis that has been given to Sully and to his family by proxy, right? When someone is diagnosed with dementia, it affects the entire family system.
And most of us know enough about what lies ahead in dementia and how heartbreaking it can be, even if we haven't yet walked this path with someone we deeply care about. And I, nor none of us, are walking in Lori's shoes. I don't know what it feels like to navigate this specific diagnosis under the glare of public attention with a partner who has literally been a hero for an entire country.
And when you love someone living with dementia, there can feel like this immense pressure to figure everything out immediately. We get a lot of advice from others about: “you need to read this book,” “you gotta get going and mapping out these next five to ten years and preparing for every worst-case scenario possible.” But Lori's words reminded me of a profound truth which is, sometimes it feels too scary to look down the road at what's coming. And it's an understandable impulse to protect oneself from overwhelm and worry. Choosing to stay in the present and take it one day at a time can be less about denial about what's coming and more about efforts to preserve ourselves and self-protect ourselves from a very scary diagnosis.
Shoshawna Rainwater (06:16)
So today I want to talk about what it means when the person in our life experiences that shift and experiences the news of a life-changing diagnosis. And how do we respect a caregiver's boundary when they say, “I really can't look at this entire picture right now. I can only see what's right in front of me.” And how do we give ourselves and spouses like Lori the grace to move through this journey one manageable step at a time?
When we talk about Captain Sully, we're talking about someone who became a household name and symbol of unflappable competence. For many of us, we are caring for an individual with dementia who also used to have very high levels of competence in many areas of their life. Maybe they were the person who managed the family finances or kept everything together regarding the house repairs or made big decisions. And maybe they served as the emotional rock that everybody could turn to during a crisis. But when dementia enters the picture, the first thing that shifts isn't usually an increase in the physical care needs, right? It's more about those changes in identity and personality and those higher order tasks, like managing finances, emotional regulation, and many, many other high-order tasks. We call those the IADLs.
There can be a profound psychological weight that hits us when the person who always had those answers starts asking us what to do next. And it can feel like the ground beneath our feet is shifting. We're not just taking on new responsibilities; we're also managing the disorienting feeling of stepping into the driver's seat when we may never had to have been in the driver's seat, or we were in a more egalitarian or equal relationship or a more supportive and equal role.
There's a concept in caregiving called “anticipatory grief.” And that has to do with the worry that we do and the anticipation that we have about what lies down the road and what's coming. But in these early stages, I often think of it as sort of “grief in real time,” that we aren't just anticipating and grieving what might happen five or ten years down the road–though that can be part of what we worry about; but we're also actively grieving these subtle losses that can be happening right now in this earlier stage. Things like that loss of shared decision making. The loss of leaning on our person after a hard day and sharing our hard day with them, or the loss of the unspoken rhythm of relating to one another that gets built in partnerships and relationships over years and decades, in that co-regulation of helping support one another's nervous systems through difficult things.
It's completely normal to feel a mix of all of those things–of the love, the sadness and frustration during this shift. Acknowledging that grief doesn't mean that we are giving up or giving into the disease. It just means that we're human.
Music transition
Shoshawna Rainwater (09:48)
Lori Sullenberger says something else in the interview that caught my attention. She gave us kind of this beautiful North Star when she said, “This is a disease, not a character flaw.” And that statement, you could tell, really resonated with some of the other Good Morning America hosts, including Lara Spencer, who repeated the statement after it was said by Robin, and then says, “We should all remember that. That we should all remember that dementia is a disease and not a character flaw.” That statement feels so clear and so compassionate when we hear it.
But if you are listening to this episode of Hope Floats, and you're in your kitchen or you're in your car and you are feeling exhausted by caregiving, you might be thinking, “Yeah, I know. I know that it's a disease. So why do I still get so angry and upset when my person is stubborn or belligerent or won't listen to me? Why can't I just stay patient?”
If you've ever asked yourself that—and I certainly have many, many times in my own encounters with my parents experiencing dementia—I invite you to take a deep breath, because this is where clinical psychologist Dasha Kiper's work in the book Travelers to Unimaginable Lands completely reframes this caregiving journey that we're on by showing us the neuroscience behind why this is so hard for us.
So in this book, we learn that the I have this in quotes, if you could see my air quotes, “The healthy neurotypical human brain has evolved to automatically attribute to other people a self and personality that is continuous over time. That is steady over time, and that that self is capable of being self-reflective while also capable of learning and absorbing new information. This is our brain's unconscious default position.” So those of us in these quote, “healthy neurotypical brains,” that's our unconscious default position. That's also called “cognitive emotional bias.” And doesn't simply disappear when we become caregivers for people whose brains change because of dementia.
So, in other words, we cannot help, as hard as we try, we cannot help but see what was once there, even as it's disappearing. Kiper’s book also explains. “That getting frustrated isn't a failure of our love. It's a biological glitch in how our healthy neurotypical brains are hardwired to react to a person or a loved one that appears to be intact and unchanged.” This is what Kiper identifies as “the illusion of physical intactness.” So, what does that mean?
Shoshawna Rainwater (12:59)
If we think about what happens when someone has a visible physical illness, say a broken leg, or perhaps they're attached to an IV infusion pump, we can look at them and our brains receive an immediate visual cue that says, “this is a person who is sick. This is a person whose body might be struggling. They need some extra help, extra time, they need patience from us.”
But in those early stages, and I would argue even in the kind of early moderate stages of dementia, our person with dementia may not appear ill or sick, right? They may have qualities that look like they have always looked. So they may walk into the room wearing their usual outfits, using their usual voice, and embodying the physical body in the ways that they always have.
So in other words, they can physically present as the same as they always have. And because their body looks intact, our healthy brains subconsciously default to that baseline expectation. It expects them to act like they always have, like an intact adult. Our brains expect logic, memory, reciprocity, some of those qualities that have been present in our relationships for so long. So when they accuse us of things like hiding their keys, or they insist that a conversation that we had ten minutes ago never happened, our brains don't automatically think, “Oh, yeah, of course, this is a neurodegenerative experience they're having. Oh, their frontal lobe isn't working very well. Oh, this is atrophy in their brain.” Instead, our brains feel that sting of a personal conflict and it registers their reaction as stubbornness, hostility, or willful defiance.
Shoshawna Rainwater (14:59)
Dementia requires caregivers to consistently override our natural impulses and intuitions, even as it robs us of the energy to do so. And that's when we can feel like we're falling into a trap, right? And the trap closes in on us. We react to the accusation of hiding their keys, or we react to the repetition that they're doing out of normal human frustration, right? We snap, we raise our voice, we often try to force them to see reason, even though we know that is just not possible. And then another wave hits us, and we remember that this person has dementia. “What in the world am I doing?”
And then can come a third wave, which is that wave of crushing guilt, where we berate ourselves and say, “Why can't I just control this in myself? Why can't I just be more patient? What is wrong with me?” That frustration is not a character flaw in us as people with neurotypical brains. And I want to read something here directly from the book. Dasha Kiper says, “a s far as the brain is concerned, there is no more critical aspect to survival than predicting what other minds are up to and why. And since the only way we can make predictions is to see others as willful other than mindless, we intuitively attribute purpose to them.” When this happens, we aren't bad people and we aren't failing at caregiving. Our brain is just experiencing an evolutionary glitch. It's trying to hold a normal conversation with a person who appears to be completely fine while their cognitive wiring is misfiring under the surface that we can't see.
Shoshawna Rainwater (17:04)
So you might be wondering, how do we break this cycle when we're in the thick of it? Great question. When you've had a long day, you're running on four hours of sleep or less, and you catch yourself raising your voice or snapping at your partner, what are we to do, right? Well, first let's throw out the idea that good caregivers never get angry. That's a myth, and it sets an impossible standard for us.
In the book, Dasha Kiper writes about an exchange she has with a woman named Kathy O'Brien who's caring for her husband Frank. Frank has dementia. And it goes as such. “Kathy says to me, ‘You should know I'm not a saint.’” Dasha replies. “I assured her, ‘I didn't know any caregivers who were, nor did I want to meet any.’” So, in other words, sainthood is not the goal in caregiving, nor is it even possible for us as caregivers. Instead, what if the goal is self-compassion that unfolds in real time?
The moment that we realize we've lost our cool, which usually happens for me within seconds after I've done it, we can try the following three steps:
We can Acknowledge the brain glitch. That's step number one. So pause and silently say to ourselves, “this frustration is a normal human response to a difficult and unfamiliar situation for my brain.” We are not bad people for feeling angry or upset. We are humans with nervous systems that are being triggered by our own well-brain’s limitations. So let's acknowledge our own limitations first before the next step, which is to acknowledge our person's brain limitations.
So, second step to ourselves, (so Step 1 and Step 2 are things we're saying to ourselves, not out loud), let's name the brain change happening in our person. We can look at our person and remind ourselves that even though we can't see it (like we could a a cast on their leg or an IV infusion), we can remind ourselves that their frontal lobe and other parts of their brain that manage logic, impulse control, and emotional regulation is losing its ability, is losing its wiring. So they aren't trying to push our buttons intentionally. Their brain is losing the ability to filter.
And then our third step might be to Reset out loud with grace. Take a deep breath and say out loud for both their ears and your own well-being, “Wow, that was a hard moment. We are both doing the best our brains can do right now. What if we were to start over?” Or, “sweetie, how about a do-over?”
What if we were to try those three steps and see if it creates a different experience for us the next time we inevitably lose our patience? When we practice self-compassion, in that, moment, right? This is about kindness to ourselves. We stand a better chance of stopping that emotional spiral before it turns into longer stretches of guilt. We give ourselves the same compassion that we would extend to a person we care about who was in our shoes.
Shoshawna Rainwater (20:41)
Once we grant ourselves that moment of grace, once we accept that frustration is a natural part of this experience and a natural human reaction to what feels to us like a broken social contract, that the people that we are in relationship with should be at least minimally able to see it our way; once we grant ourselves that moment of grace, once we accept that frustration is a natural human reaction to what feels like a broken social contract, we can stop fighting ourselves. And that is when we can actually start building strategies that work for both our person with dementia and ourselves.
Because holding on to Lori Sullenberger's important message that “dementia is a disease, not a character flaw,” wasn't intended to (nor should it feel like) a burden that we are failing at in our roles as caregivers. It should be a lens that helps us set realistic expectations for the people we care about, and maybe more importantly, reasonable expectations for ourselves.
Music transition
Shoshawna Rainwater (22:03)
The final takeaway is perhaps the most vital that I want to convey, and that is this building the support team before we reach burnout.
So public figures like the Sullenbergers may have resources and supports to help them manage what's coming with dementia progression, resources that many people may not have. But even if resources are widely available, I wonder if Lori will still feel, at times, like she needs to or should be doing this alone. Because we often try as caregivers to do it all alone. And I think spousal caregivers, in particular, are at higher risk of isolation in this experience because spousal caregivers can feel an unspoken duty to protect our partner's privacy. And in this situation, may feel responsible to sort of protect the integrity of Sully's legacy and personhood, right? To protect that status as a hero. And that is a huge load to carry from where I'm sitting.
Lori Sullenberger deserves good support on this journey, and so does everybody else. She deserves to know that while it can be difficult to know what lies ahead, many people do better if they have been given good anticipatory guidance coupled with resources for practical support. I am but one of many people that help people in this way, providing good guidance and support for what lies ahead and how to move through it. And we do this work because we know from experience that getting ready for the journey ahead will allow people to feel better supported and prepared as things inevitably change. Trying to learn the pathway forward when you're in the middle of the messy, moderate stage is like building the plane as it's being flown. It is profoundly harder to do.
So Lori Sullenberger has not asked my advice about how to move forward, nor may she even need it. But if there were three things that I could encourage, I would tell her this:
I'd encourage finding a caregiver support group, whether local or online, where Lori can speak freely about her experience without judgment. That's the design and the purpose of caregiver support groups is that they are a safe space to be able to talk about the realities and the challenges of this experience.
Shoshawna Rainwater (24:54)
Suggestion number two would be: Identify one or two trusted friends or family members who know the reality of what's happening at home, who can be confidants and can be non-judgmental. And hold that space.
And then thirdly, looking into professional guidance early in the experience, folding in things like elder law and care navigators, so that Lori isn't making critical legal, financial, or medical decisions in the middle of a crisis without the right guidance and paperwork in place. And this is particularly important because it's a time-sensitive issue that needs to happen in the earlier stages of the disease while the person with dementia has capacity to do things like preparing and signing important documents.
And so I I want to name the sort of no fault/no blame perspective here, as I've talked about what's on my mind today and the learnings from this book, Travelers to Unimaginable Lands. I recognize that myself at times in my career, I've unintentionally contributed to the narrative that caregivers should just kind of do better or know better because we are the ones operating out of these neurotypical, quote, “healthy brains.” I've even used in talks a slide that shows a side-by-side comparison of a healthy brain and a brain experiencing Alzheimer's. That's not the problematic part. That actually can be kind of illuminating for us to see the structural changes and atrophy that can happen in the brain of a person with dementia. The problematic part in my mind is that I've shown that slide and I've asked the question, “which of the two brains that we see here has the capacity to change how they respond?”
Shoshawna Rainwater (26:55)
And while it is likely true that the brain of the well and healthy person has more capacity, of course, to learn new tools and to adapt to a new way of being, by saying that I was underappreciating, I did not have an appreciation at the time that of the biological and evolutionary forces at play that make it not so easy to just change how we do things as caregivers. And this book helped me see this more clearly. And I recommend that if and as and when you have time and energy to do so, that you read or listen to it, as well. It was really unlike any other book on dementia caregiving that I have read, and it fundamentally shifted my understanding of the caregiver's brain and what is asked of them and how hard that can be.
So as we step back and look at the bigger picture today, I come back to the title of this podcast, Hope Floats. When someone you care about receives a diagnosis like Alzheimer's, or when you notice those first undeniable changes in a person you've loved for decades, hope can feel like a tricky word. I get that. It's easy to think that “hope” means things like holding out for a cure or wishing things could go back to the way they were before the disease took hold. “Hope” isn't about denying the reality of what's coming with a progression of dementia. “Hope,” to me, is knowing that even when the path changes, we don't have to do this alone and we are not alone.
Shoshawna Rainwater (28:34)
I want to honor Captain Sullenberger for his continued leadership, showing us what courage and integrity looks like by sharing this diagnosis so openly. And my heart goes out to his wife, Lori. Thank you, Lori, for giving him the strength and encouragement to share this really important story. If this message ever reaches you, I hope you remember that your well-being matters just as much as Sully's. And when you're ready, I hope you lean into the support and guidance that exists to support you. We all deserve that in our caregiving journey.
I have one final thought, a potential call to action, an invitation for the 155 passengers that were aboard that plane, the “Miracle on the Hudson.” If you've ever wondered how you could repay Captain Sullenberger, perhaps learning about the landscape of dementia, advocating for good care for the people who are experiencing it, and sharing Captain Sullenberger's story about his dementia experience with caring others, I think, would be a lovely way to honor him.
Thank you all for listening. Thanks for being with me on my first solo flight, if you will. I wanna actually give a quick nod to my sister Jenny, who basically said “you need to pick up the microphone and record today and send me a text that you've done it because I need a little extra boost.” So thank you, Jenny.
Thanks everyone. Please take good care of yourselves and I look forward to connecting with you again soon.
Shoshawna Rainwater (30:27)
If you found today's episode helpful, please subscribe or share it with another caregiver who might need to hear this information. You can find more resources and past episodes of Hope Floats at www.rainwaterconsultingpdx.com
I'm Shoshawna Rainwater. Take what you can use from our conversation today, and leave the rest for whenever you might be ready. Please remember to honor the work that you're doing, and more importantly, honor yourself. I'll be here with you next time.
Disclaimer: The information shared on Hope Floats is for educational and supportive purposes, and is not a substitute for professional clinical advice or a therapeutic relationship.
