Why we're here and why Hope Floats

Welcome to Hope Floats! In this first episode, Shoshawna and Rachel introduce themselves and explain why they created the Hope Floats Podcast. As two people who have been care providers for people with dementia and who both have professional experience supporting caregivers in the dementia journey, the co-hosts share what brought them here, what the listeners can look forward to, and why they believe hope can be a part of the uncertainties of care providing in dementia. They look forward to an honest discussion about this disease, discussing choices and options, and sharing resources and tools to help navigate this journey with hope. It's time for a new conversation about dementia and caregiving.  This is Hope Floats.

Takeaways

• Dementia is a challenging disease that requires better resources and support
• The Hope Floats podcast aims to provide information, support, and hope for families dealing with dementia
• Rachel and Shoshawna share their personal experiences and motivations for starting the podcast
• The podcast will be honest about the challenges of dementia while also offering strategies for reducing suffering and enhancing well-being
• Hope and community are important aspects of navigating the dementia journey

Chapters
00:00 Introducing Hope Floats
06:35 Personal Journeys
21:31 Agreements and Permissions
29:36 The Importance of Hope and Community

Transcript

Ep1 – Why we’re here and why Hope Floats

Rachel Coady (00:05)    

Welcome to Hope Floats, a podcast for people who are navigating the challenges of caring for a person with dementia.  I’m Rachel Coady.

Shoshawna Rainwater  (00:14)   

And I’m Shoshawna Rainwater.  On this episode of Hope Floats, we wanted to talk about why we create this podcast and what you the listener can expect.  Let’s get started.

Rachel Coady  (00:32)   

Today we really want to introduce ourselves and talk about our “why” and what this podcast is all about.

 Shoshawna Rainwater (00:39)    

Yeah, I think that’s a good place to start.  You know, I come at this from a perspective of clinician. This is a disease that I've had a deep interest and curiosity about for the entire time that I've been a clinical social worker, which is about 20 years now, and I have often asked myself the question like, why is it that dementia is so uniquely difficult and challenging.  And I've wanted to better understand why that is. I also think, as I've worked in the landscape of the medical establishment, I realized that this is the least supported area, of medicine, and seems that we just don't have a good playbook for families who are going through this disease experience and that it's hard on everybody involved--yes, the person who's experiencing brain changes, but also for anybody who is in relationship with them. 

And then I've always kind of been fascinated by this question around like, how can something so common and ubiquitous also be so lonely? And trying to find the answer to that question as long been part of my curiosity about this disease experience.  And there's a lot of stigma with this disease, and a lot of unwillingness to talk about it, and that, in and of itself, is something I'm kind of drawn to and have historically kind of pushed against and my professional background around why? Why do we think this is so terrible we can't talk about it? 

And then the I think one of the last reasons that I'm kind of drawn to this work is that I really think there is a disproportionate foisting of the responsibility of managing this disease onto families, and we give very little support or guidance to people who are going through this disease experience. It feels fundamentally unfair to me, and part of what has been the catalyst for me around wanting to start a podcast that talks honestly about some of these really challenging parts about dementia. 

Rachel Coady  (03:27)  

Yeah, I that's a disease and a journey I wouldn't know if I hadn't had personal experience with it. And I think that's true for a lot of people. My mom started showing signs of dementia and struggle with memory in about 2019--maybe a little earlier than that--but by 2019 the signs were strong enough that we decided we needed to kind of take some action as a family and figure out where she was and what this meant. And I knew of the Alzheimer's Association before that, but I didn't know of anything about the world this disease, or the fact that there's different kinds of dementia or different kinds of cognitive changes that can happen for people. 

What I found was that doctors that we worked with were really anemic in information or resources for us to understand more. It was kind of like, “Yeah, this is common. We don't know a ton about it. We're sorry. And here's kind of the next step you can take.”  Which just feels like such a non-response, in a lot of ways, non-helpful response.  And so I found you through another friend of ours, and started working with you to better understand what was actually going on for my mom and what was actually going to be going on for us as the people who are partnering with her as she went through this disease.  And it really helped me see more about how I could show up for her and also how I could take care of me, how my sister and I could take care of our sisterhood by working with you. 

So, my mom's disease continued through the pandemic. In fall of 2022 she passed, and it was a pretty short journey in dementia. Along the way, we used online and in-person support groups to kind of help us understand more; but in those groups, I also found a lot of frustration and venting and not a lot of helpful resources, but more just like kind of group therapy--which was helpful in some way, but what I really wanted to know about were more options and ways that I could get support that had some kind of optimism or value or meaningfulness to them. 

It helped me as a coach, to use tools that I had used in, you know, as a as a life coach with people, to look at how I could get through this, how I could support my mom in this, how I could make our time together as valuable and high quality as possible. So, you and I worked on some of those.  I'm excited to share those with this group. But ultimately, when we started talking about doing this, I thought back to my own journey with this disease and what was happening for my family, and I just wanted a way to try to help more people go through this in a more successful way, that's available to them and their loved one. 

I feel really compelled that we have got to start doing better for people with this disease and for the communities that are helping take care of them, especially as we see increasing numbers of people who are unfortunately going to deal with this. And I thought our podcast, we can work towards delivering that. Yeah, it makes me really excited to get to do this with you. 

Shoshawna Rainwater (06:01)  

Yeah.  What I experience in my sort of my professional career is that people grow the through the experience of having a loved one with dementia and then shut the door and say, “I will never have a willingness to lean into that experience ever again.” And I think it's a bit of a trauma response. It's a really understandable response. And I appreciate you wanting to utilize your hard-earned knowledge and take that experience and funnel it towards helping other people. 

Rachel Coady  (06:34)  

When you think about your “why” for this journey, in addition to the, you know, obvious professional experience that you've had with it, what are some of what are some of the parts of your journey that you want to share, that you think you can bring to this experience for our listeners?

Showshawna Rainwater  (06:49)  

Having been a long time clinical social worker, I've always been drawn to the population of older adults. And I don't know the origins of that exactly. I think it's because older adults were one of the most delightful populations in my life.  I had grandparents and great aunts and uncles that brought me so much joy and a feeling of settledness in the world.  But as a social worker, I've also thought a lot about where is there the greatest need? And in the older adult landscape, I think that dementia is the area that I see the most challenge. And so, I think it's sort of normal and understandable that that's where I have leaned in and wanted to spend my professional career, learning about and trying to find best practices around supporting people who are going through this experience-- both the people with experiencing the brain changes, but also the people who support them and care about them. 

And then in that landscape of older adults and serious illness, seeing that dementia was really the area where there was the least amount of support provided by the medical establishment, as I said a little bit earlier, around my why that bothered me a lot, and also made me kind of scratch my head around, like, why is that? Why can't we do better for this particular disease?   And I also think that the medical establishment feels that their hands are a little bit tied with this, because we don't have a cure and we don't have a medicine that can make this go away. A lot of what's left is helping the support team understand how to develop and be in a new relationship with their person who's experiencing brain changes. And that is not usually the wheelhouse of sort of the traditional medical provider or a neurologist. And so part of me felt like, well, “this is something that is within my wheelhouse, and something that I should be helping people understand”-- that there are lots of psychosocial types of interventions, behavioral interventions that we can do to help this disease experience go better. 

So, my interest in, and I would say, sort of passion for learning about dementia and all things dementia far predated 2019 but in 2019 and I would, I would say, if I'm being honest with myself, probably one to two years before 2019 I started to notice changes in my mom.  Changes that involved her having a lot more difficulty navigating her world. And like most people who have a loved one that may be experiencing brain changes, I really, really hoped that this was stress or it was depression or both; but I really, really hoped it wasn't going to be dementia. And so we kind of watched and sat back and kind of observed her symptoms for, I would say, probably one to two years. And I think what happened is what happens in a lot of situations where you get to a point where you really feel like there's just no question that something is fundamentally different about my loved one. And in July of 2019--as we record, this was actually five years ago--so in July of 2019, we my mom was seen and evaluated at length by neurology, and emerged from that appointment with a diagnosis of a Mixed Type Dementia. And I was both shocked and not shocked, but I would say mostly shocked, I think what it did was shock me out of any kind of hopefulness or denial that this was something less than dementia. I really wanted it to be anything but that.  Her evaluations really didn't leave us with didn't leave me with a lot of room to be in denial any longer, and that was really hard, one of the hardest days of my life.  But I remember feeling “our family will never be the same.” This is a fundamentally game changing experience. 

I will say my interest in and sort of passion for understanding the dementia landscape would have been really incomplete without the first person lived experience. Not that I would ever wish this upon anybody.  But having a parent with this disease has been a fundamental game changer in how I view the disease and how I understand management of the disease, and in how I think about ability of a primary caregiver to show up. 

We are at the very beginning of a dementia epidemic in this country.  I see things as feeling quite untenable for many people and I am thinking a lot about my future self as a person whose chances may be that I experience dementia. And part of me is also hoping that this can be a sort of an honest and open forum for those of us who think about our future selves as people who potentially have dementia. 

Rachel Coady (12:01)   

Yeah, I feel like when I was growing up, the like the conversation I heard a lot of older people talking about was the great fear of this disease, and I think it is the most feared diagnosis for a lot of elders and for their children, to your point; it's this kind of abyss that exists that could happen, and because there's not a care, because there's not really even advanced treatment for navigating it, it's a disease with a different level of fear than many others. And so I echo your sentiment that part of our real hope for this is to get honest about the fact that a lot of us are on this journey, have been on this journey, potentially will be on this journey with our loved ones or for self and we need to start talking about that and come up with some tools and ways that we can get through that that aren't just about loss and grief and struggle--those are part of it, too. But I really do think the fear in this disease and of this disease has proven that it's time we start talking about it.

Shoshawna Rainwater  (13:01)  

Yeah, I heard something interesting the other day Rachel on the Brainstorm podcast, a guest said, “you know, the only thing worse than dementia is the ignorance of dementia.” And I really landed from me.  Yes, it's a really difficult and challenging landscape, but what I have come to really strongly believe is living in ignorance of it is actually way worse. May not feel that way initially, and that's a large part, and we'll talk about that in future episodes, as to why kind of initially, because it's slow, typically, in its onset; it's insidious. We don't think of it in those terms, and yet, I have come to strongly believe that not knowing about the experience is way harder than being informed.

Rachel Coady (14:04)     

We both have personal and professional experiences that we think can be useful to our listeners, but let's also own some things, you know for example, we're going to make mistakes in this podcast. We're going to be human. We're going to do our best to represent a spectrum of experiences. We're both paying attention to reading research, following progress on this disease, but we all know that there's going to be moments where there's lapses or issues. We will own those. We'll do our best to correct them. But we just want to own upfront, everybody with this dementia journey experience. Everybody has a different experience in their dementia journey, and we are not standing here to be experts and diagnose anything for other people. We're really here in service to offer resources and support, try to be helpful to our listeners. 

I think another key thing that both of us feel really committed to is to talking about dementia with integrity and really putting the dignity of the person, the loved one, the person you're taking care of, at the center of this discussion, that we're not here to make light of this disease and to really speak from our own truth, our own experiences, but to do that in a way that really shows respect and dignity for the people in our lives who are on this journey that we're here to support.

We'll also own that the world of caretaking is full of a lot of different socioeconomic and social hurdles, and we speak from our own places, and want to learn from our community and learn from others’ experiences about how that looks; but we know that we don't know everyone's family, we don't know cultural nuances in caretaking necessarily, so we're open to learning about those, and we'll do our best to speak from a place of neutrality about those. But there's no question that caretaking largely impacts women more than men. It largely impacts people of color in a different socioeconomic level than predominantly white culture, and so we just want to own that we will be sharing our experiences and learning as a community together. But we ask for your kind of permission as listeners to understand that we all have different perspectives on this and we can actually learn a lot from each other.  

Shoshawna Rainwater (16:14)  

Yeah, and then I think one of the things we were, you and I have been batting back and forth is sort of what is our hope for ourselves and for others?  So, people have--especially people who are in the role of caring for a person with dementia--these are people with limited bandwidth. Time is really valuable to them. And we tried to come up with some core tenets or some permissions around, what are we about here? And the three different categories we came up with were building knowledge. So, in my experience as a clinician, one of the most helpful tools is to understand this disease landscape and to really understand and have a clear-eyed experience of what are you up against here as a person who's caring for a loved one or a person with dementia?I also want to name that while our hope is to talk well our   goal and what we commit to is talking about this disease, holding the integrity and dignity of the person with brain changes at its core and center.  It’s also really important, I think, to both of us, that we talk in an open and honest way about how hard this is. And I wouldn't be surprised if at times, our listeners experience us as a bit frustrated, angry, sad, exhausted--you know, Brene’ Brown talks about a little bit of pissed-offedness. I wouldn't be surprised if some of those emotions are part of how people experience this podcast, both for themselves and then also they may experience, as listeners, that you and I are feeling frustrated with this disease landscape. And I remember Jason Karlawish, who's a physician and has done, wrote the book The Problem of Alzheimer's, he was being interviewed, I think it was by Brene’ Brown, and he said, “you know, somebody said to me, as I was talking with them about this disease of dementia, they said to me, ‘you know, use them kind of angry.’ And he said, ‘Yeah, I am angry. I'm angry at how we have treated this societally, how we've not been able to be honest with people about this disease experience; how we have under-supported the people who are doing such hard work.” And so, I just name that because I think dignity and integrity is a core value that both of us want to bring to this podcast, and honesty is also a big part of this. And so, it may not feel like a big unicorns, rainbows and bright sighting kind of podcast at all times. But we also have a real intention to find the good parts about this disease experience and the strengths in all of us. So, it'll be a dance, no doubt, right? 

One of our other tenets is to help reduce suffering. You know, there's such suffering and this disease and such feelings of loss and grief and exhaustion and overwhelm in in caregivers. And our hope is to be able to kind of squarely talk about those things, look at them square in the eye and say, “why is this disease so difficult? and how can we mitigate some of the suffering?” We won't be able to mitigate all of the suffering, of course, but our hope is to be able to turn down the misery index just a little bit. And then our, I would say, one of our last core tenets that that we came up with is to enhance well-being. And I think Rachel, this is part of where you shine as a life coach is that there can be things that can be added, infused into one's day, sort of practical steps, practical strategies for setting limits, boundary setting those kinds of things that really help people feel better and enhance their well-being. So, I'm really excited to learn from you around some of those ideas, too. 

Rachel Coady  (20:13)     

And we look forward to learning with our listening community, towards ways that we can continue to evolve and elevate this conversation to be helpful and hopefully hopeful in some ways that, to date, feel like it hasn't been. 

People do not think of this as a hopeful space, a hopeful disease at all, but we want to, in a way, kind of challenge that. I think there's no denying that dementia is challenging, and the differences of dementia are challenging. The journeys can be very difficult to navigate. But we really believe and have found in our own journeys that there are choices in this experience, there are ways that we can make this meaningful and find the light in the moments with our loved ones.  And, you know when I first started understanding that my mom and I were going to go and my family were going to go on this journey, I really found that there are few people with encouragement or optimism, that most people were really apologetic, and their experiences had been pretty grief-filled and sad for them. And it made me feel overwhelmed. It made me feel lost. It made me feel really alone. And I know there's more research happening now, hopefully we're living in times where we'll see more progress on this disease, and it hopefully an increase in services and support. But in the meantime, we feel like if we're going to show up and we're going to talk about this, and we're going to get honest, and we're trying to be helpful, and, you know, reduce suffering and encourage well-being, that we're going to do this through a lens that there is light, that there is something available to you, and that you are not alone. There are actually thousands of families, unfortunately, going through this, and we can do this together. 

So, we want to bring some possibility and choice to the conversations around dementia that we just haven't seen yet.  And here, we hope we can bring you community. We hope we can bring you inspiration and support. We hope we can find some companionship on this journey, and in the end, that that can make this a meaningful part of what you go through with the person that you care about and love. So, hope does float. We felt like that was the name that really spoke to what this was about. And we wanted to try to own that idea and bring it to life with this community and listeners like you. 

You know, this is the first episode we're introducing ourselves and excited to be here. There's a lot of content that we're going to cover, but we also want to engage this community. We want to hear from you, the listener, on thoughts or questions, topics that might be helpful for us to discuss, and we want you to understand that you can reach out to us and share your experiences and let us know what could help you navigate this journey and support you. And you can do that through our website, at HopeFloatspodcast.com.  That's also where we'll share more tools and resources and libraries that can help people on this journey. But to reach out to us, get in touch and become a part of this community go to HopeFloatspodcast.com.

We'll be back soon in the next week to talk more about kind of an overview and understanding of dementia and this disease experience. Thanks for being here. Thanks for listening. Be sure to share our information or follow us as you want to, and we look forward to going on this journey with you.

Shoshawna Rainwater  

All right, look forward to next time.

Rachel Coady 

You can always reach out to us here at Hope Floats with your questions or with topics you'd like us to discuss on the podcast. We're here if you want to share your experiences and let us know what could help you navigate this journey, we want to support you.

Shoshawna Rainwater 

You’ll find us at our website, hopefloatspodcast.com.  When you're there, you can learn more about the work we do. That's also where we'll share more tools, resources and libraries that can help people on this journey.

 Rachel Coady 

Never miss an episode of Hope Floats by following us wherever you listen to your podcasts and join our community at hopefloatspodcast.com.