The Invisible Second Patient: the Caregiver

In this episode of Hope Floats, hosts Shoshawna Rainwater and Rachel Coady discuss the often-overlooked experiences of caregivers for individuals with dementia. They explore the emotional and physical toll of caregiving, the importance of building a support team, and practical tools for self-care. The conversation highlights the need for caregivers to recognize their own needs and seek support while navigating the complexities of dementia care.

Takeaways

●      There are approximately 21.6 million caregivers for dementia in the U.S.

●      Caregiving can last anywhere from a few years to 20 years.

●      The majority of caregivers are women, often family members.

●      Caregivers experience decision fatigue due to increased responsibilities.

●      Building a support team is crucial for caregiver well-being.

●      Caregivers often feel isolated despite the large number of people in similar situations.

●      Understanding the stages of dementia helps caregivers prepare for changes.

●      Self-care is essential for maintaining caregiver health and resilience.

●      Micro-moments of freedom can help caregivers feel more in control.

●      Practical tools can aid caregivers in managing their responsibilities and emotions.

Transcript

Ep3 - The Invisible Second Patient: the Caregiver

Shoshawna Rainwater (00:05) 

Welcome to Hope Floats, a podcast for people who are navigating the challenges of caring for a person with dementia. I'm Shoshana Rainwater.

 Rachel Coady (00:13) 

And I'm Rachel Coady.

 Shoshawna Rainwater (00:15) 

On today's episode of Hope Floats, we're gonna be talking about what I call the invisible second patient in dementia, the caregiver. We'll take a look at the big picture of caretaking in this disease, some common emotions and experiences that can come along as part of this journey, and some of the ways to gather support for you in this role. 

We believe here at Hope Floats that the preservation of the caregiver is not only important, but also possible on this journey. And we recognize the role of dementia caregiving takes a toll on our bodies and souls as caregivers. And there are millions of us going through this.

 Rachel Coady (00:57) 

So let’s jump in.  Shoshawna, maybe we start by actually breaking down how many people are doing this work. 

Shoshawna Rainwater (01:04) 

There's a lot of us doing this work–millions of us in fact. There's about 22 million people providing unpaid care to a person with dementia in the U.S. And these caregivers are providing 18.2 billion, with a “b”, hours a year of unpaid and uncompensated care. A lot of this care occurs outside of health systems and behind closed doors of private homes of people like you and I, invisible to and unwitnessed by others which can contribute to feelings of isolation. The majority of caregivers for people with dementia are women. 

 Rachel Coady (01:39)

Oh I'm sure a lot of those are also spousal family members that are in partnership with someone going through this disease. So, you kind of can wear multiple hats of being a daughter and a caregiver or a wife and a caregiver. The people closest to you, I think, oftentimes are doing that frontline care.

 Shoshawna Rainwater (01:57)

They are. They are.

 Rachel Coady (01:59) 

And then how long are they doing this care?  You know, we've talked about the length of disease, but what does that look like for a care partner?

 Shoshawna Rainwater (02:07) 

One of the challenges with dementia caregiving is that it tends to be a longer role than some of the other major organ diseases.  People can be in this role from anywhere from a couple of years to up to about 20 years. And it's the longitudinal role that is challenging for people. Year one looks very different for a lot of caregivers than say Year 15 or Year 20 because the challenges accumulate and exhaustion accumulates. And so there can be real challenges for caregivers to try to self-preserve and stay well the longer they're in the role.

 Rachel Coady (02:48) 

I think when we were on this journey, I wanted to know everything about what was going to happen, right? And to have a plan as a frontline caregiver for my mom. And one of the things that you helped me understand is where I was and helpfully kind of like what might be coming. But because everybody with dementia is different, we didn't really know exactly when that would happen. And the stages were all different.  And the support I would need as a caregiver was really different. So I think in the caretaker role or care provider role, it can be really hard to kind of navigate where you are and what you need because it is changing. Maybe you can talk a little bit– and I know we'll go into this in other episodes–but just some examples of different stages for caretakers.

 Shoshawna Rainwater  (03:39) 

Yeah.  I think about caregivers in the very early part of this disease experience–perhaps before a diagnosis has been obtained. And there's a lot of worrying and wondering. And gosh, “is this what I hope it's not? Could this be stress that I'm seeing in my loved one? Could this just be depression?”--not just be, depression is a big deal; but there's sort of an ambiguity about what is on one's plate. And that's a really hard place, I think, for caregivers to be in. And oftentimes when and as a diagnosis is provided or given by the medical team, there can be some relief in the clarity of what you're dealing with and what path you're on because it's hard to get ready for a journey unless you understand what path you're on.

 Rachel Coady (04:42) 

Absolutely.

 Shoshawna Rainwater (04:42) 

But yeah, but there's also a lot of grief as the reality of the diagnosis begins to set in.

 Rachel Coady (04:50) 

Yeah, I think when we started, I did feel that relief you're talking about to kind of get a diagnosis and know a little bit more about where we were. And if I'm honest, I oftentimes felt like she performed better in front of the doctors than it was day to day. So, if I'm being totally honest here with our listeners, like I always thought her diagnosis was further along…  

Shoshawna Rainwater (05:13)  

Mmm. 

Rachel Coady (05:13) 

…than the doctor claimed it to be and part of it's cause I didn't really, I hadn't really witnessed and been a partner to someone in dementia before. But that early stage, once we had a diagnosis, I think I felt like, “okay, we're here.”  We did get a diagnosis in the early parts of it. And then it was this game, I think you're so right in naming it “wondering and worrying” because I was like, “well, when's it going to change?” or “what do I have to look out for?”  You know, “how do I handle what's next?” 

 Shoshawna Rainwater (05:40) 

Yeah.

 Rachel Coady (05:40) 

So, I think there is a labor as a part of being a caregiver and going on this journey and kind of anticipating what's ahead, but also trying to kind of enjoy where you are in the journey, cause you know, things are going to change. 

 Rachel Coady (05:50) 

What is, maybe again, just briefly, in more of a mid-stage moment, if someone's getting a diagnosis there, like what's a summation maybe of like how mid-stage might be different than early-stage?

 Shoshawna Rainwater (06:07) 

So the losses that we begin to see in mid stage have to do with what I call kind of our “bucket” of functional abilities that are things that we have typically mastered by the time we're young children. And these are actually called Activities of Daily Living, or ADLs, and we'll do a whole episode on ADLs. But these are the functional abilities that begin to be impacted and lost when we are moving into mid-stage. So these are things like bathing ourselves, dressing ourselves, toileting ourselves, feeding ourselves. Those kinds of life skills that most of us probably had mastered–for neurotypical people, we've probably mastered them by the time we were six or seven years old.  

And so those are the losses that begin to be impacted in mid-stage. And not only are we experiencing those losses, but we also may be seeing more what we call “neuropsychiatric symptoms” in our loved one, where the things like distorted thoughts, hallucinations, delusions, those kinds of things also really begin to be more prominent by mid-stage. It’s a really hard, it can be a hard stage for caregivers.

 Rachel Coady (07:27) 

And it might also be a stage where additional caregiving support starts to be needed. Is that true?  Is that where maybe we look for some other…

 Shoshawna Rainwater (07:34) 

That's really fair. 

 Rachel Coady (07:35) 

…some other hands and help? 

 Shoshawna Rainwater (07:38)  

Yeah, I think it's usually the point in time where many families begin to realize like, “Uh-oh. This is not just a one person job anymore.  This caregiving role, we gotta start adding more people to our team.”  And it's one of the most important things that we can do as caregivers is to begin to think of ourselves as “a member of a team,” not as a team in and of ourselves, just our one sole person.

 And in earlier stage, it is often possible, though very challenging at times for the caregiver, but it can be possible that the functional decline and the behaviors of our person with dementia can be managed at home, with a single caregiver. But usually as we cross the threshold into mid-stage–which is on average about three to four years into the disease experience–once we've moved into mid-stage, things can feel a lot more challenging for the single caregiver. And that's where we really want to emphasize team expansion, if you will. And we'll talk about that, I know you've got a lot of insights to share in this area and we will have episodes, probably multiple episodes about how do we build our team? 

Shoshawna Rainwater (08:55) 

Because I agree. We're gonna need it. Most of us need it by mid-stage. 

Rachel Coady (08:58) 

Yeah, my team was definitely the key to success for our journey. Just to kind of round it out, from the caregiver perspective, what's kind of a summation of what the late-stage caregiver experience can look like?

 Shoshawna Rainwater (09:12) 

Late-stage in dementia can be a very different kind of stage than mid-stage because a lot of the functional abilities of a person have been impacted or lost by late-stage. So that's part of what makes mid-stage so hard is we're watching a lot of those functional abilities change. And by late-stage, we're usually seeing people have full dependence–that's the language that we use in sort of the medical world around functional abilities–they have full dependence, meaning they're reliant on someone else for the majority of those activities of daily living like bathing, dressing, grooming–where all of the activity has to be initiated and carried out with the help of another person. 

 And then one of the other hallmarks of late-stage is–not for every subtype, but for most subtypes–there's a loss of language skills. And so part of what might have made mid-stage challenging, if there was a lot of verbal agitation, repetition, asking the same questions, those things can look different in late-stage because a person may have lost verbal abilities. So, I wouldn't describe late-stage as easier than mid-stage or early-stage. But it's different. And there are different challenges and your person with dementia will have greater physical dependence and need for a lot of intensive physical care that they may not have had, likely did not have in mid-stage. It's kind of how you know you're now in late-stage.

 Rachel Coady (10:54) 

Uh-huh.  You know, interestingly, as I'm listening to you share this, I can't help but think about, you know, again, our journey. And I think that as a caretaker, frontline caregiver, for my mom, I really felt more isolation and aloneness and challenge in the earlier parts of the disease, in the middle parts of the disease, I think, than the latest parts. And I don't know if that's accurate for everybody, but what I'm thinking about is that when you begin and you're going on this journey, because there are unknowns, you don't know what the progress will look like, you don't know how your loved one's gonna do, you're kind of being a captain of a ship that you're, you know, it's full of uncertainty and you're doing your best to navigate that and carry on your life. 

 When we got to the latest stages of this disease for my mom, the team showed itself more clearly because of my mom's needs and for families that can, can afford the resource, there are caretaking homes, there are in-home workers, there's hospice when you get into later stage. And so I think that's one thing is as our journey went and I started to see more people that could help us, or we realized that we had reached experiences where she could get different kinds of support, I felt a very different experience than kind of being what felt like the lone captain on the boat at the beginning–or, you know, not alone. I had support.  But, it's just coming to me that some of the feelings that you go through as the caretaker and the experiences you go really do change just as the stages of your loved one, progress and change.

 Shoshawna Rainwater (12:36) 

Yeah, that's true. So late-stage, on average, can last two to three years. And hospice is a service that would be available to people who we believe are in the last six months of that. So there is a really robust team available to us when our loved one meets that criteria for being in the last six months of life.

 And you're right that usually by late stage, I think we feel less alone because there are simply more people involved in the care because there has to be, typically. Now that's not to discount the countless situations where people are the sole person involved doing all of the care all the way through the end of the person's life. 

 Rachel Coady (13:19) 

Absolutely.

 Shoshawna Rainwater (13:19) 

And that's incredibly challenging. But I think in early-stage, there's almost a–I think this was true for me–I think about what my daughter used to say when she was like three or four years old and she thought she knew everything and could do everything. She would say, “I do it, I big girl.” And I kind of think about that mentality that I at least had at the beginning stages of my mom's experience of this is like, “I can do this. I'm a grown person. I have a good understanding of dementia. I can do this on my own.” And as my mom went through early-stage, I very quickly, humbly realized like, ”I can't do this by myself. That's a ridiculous notion for me to think that.” 

 Rachel Coady (14:03) 

Yeah. And I think it does help just to hear the numbers you shared at the beginning of sort of how many people are going through this. And I'm sure a lot of us felt alone, feel alone at times in it.  And it's one of our big goals here is to say, “you're not.  Many of us are in this experience and have had this experience and we can be here for each other.”  

Shoshawna Rainwater (14:25) 

In the first episode, I named that there's this paradox between this disease being so common, so ubiquitous, so many of us–almost 22 million of us– doing this work and also this really profound sense of loneliness. It's understandable and there's a disconnect there. Like, “gosh, there's so many of us. I know that we can do better.” It's part of why you and I created this podcast was to help hopefully mitigate some of that loneliness for people and that sense that nobody understands.

Rachel Coady (15:00)

Yeah.  We talked a little bit about some of the isolation people can feel in this journey. What are some of the other emotive experiences that you find common amongst caregivers in the early and middle parts of this disease experience?

 Shoshawna Rainwater (15:16) 

There's a lot of decision fatigue that can set in for caregivers because we are now thinking, planning, and doing for two people. And if you think about the average human who's making–  I think we make up to like 35,000 decisions a day–granted a lot of those decisions are sort of automatic thoughts. They're not conscious. We're not really thinking through them, but our brains are busy and they're making 35,000 decisions a day for us to have a successful navigation from sunrise to sunset or when we go to bed. When we are caring for a person with dementia that cognitive load doubles.

Shoshawna Rainwater (16:02) 

And you might say, “well, my loved ones still can do, you know, half of 35,000 decisions a day.” And that is true. But one of the challenges that comes with dementia is for the person going through the experience of brain changes, there is a lessening awareness of what's safe–a safe decision or a decision that would not cause harm to self or other. So, part of what is challenging about this role as caregivers is that it puts us on alert for sort of the next issue that's going to come up because my loved one is having trouble making safe decisions. We'll do episodes on what that can look like–it can be anywhere from a person wanting to explore their environment so they wander off. That can be just in the immediate household accessing and maybe eating things that are unsafe. There's a lot of hypervigilance that comes with this role as caregiver.

Rachel Coady (17:03)  

Yeah, it makes me think I had family members that are being supportive to loved ones with this role and I have, my sister had children when she was being supportive to my mom on this role. And I think a lot of people are what they call kind of “sandwiched” between trying to be a great parent to their children and look out for what their children's needs are as well as looking out for what their parent’s needs are and the changing parent needs. And, and it does, add to decision fatigue and overwhelm and it would for anyone, you know, of course, of course it does. So I think it's again, we're going to focus more on this “team” mentality through this disease and where you can find other support, but it makes sense when you start looking out for multiple people and their wellbeing and what they can be most successful at.  It wears on us, wears on everybody.

Shoshawna Rainwater (17:54) 

Yeah.  Some of the other things that I think impact caregivers is the question about whether or not they had a choice in taking on the role.

Shoshawna Rainwater (18:04) 

And many people say ”I didn't have a choice in taking on this role as primary caregiver for my person.”   And then I think another issue that really impacts the experience is what was the quality of the relationship between the caregiver and the person with dementia prior to the onset of dementia or the changes in the person's brain.  That can be particularly challenging if we're talking about being an adult child where you didn't choose your parent, whereas a spouse may

say, you know, “this was, I chose this person”, right? Ostensibly, that's what marriage is. But as an adult child, you may not feel like you chose this role or you chose this relationship. And there can be some concerns that come up around, ”how do I care for this person and meet their needs if, say, as a child, my needs were not met by this person?” And that's probably its own episode, to be honest.

Shoshawna Rainwater (19:12) 

There's a lot there for those of us who feel this sense of role captivity and if the relationship was challenged in earlier parts of the relationship, as we were going through childhood.

 Rachel Coady (19:25) 

Yeah. I think one of the things that I will say this experience taught me with my mom was it was a great understanding of how I needed to expand as a person. People who know me and I'm happy to say on my own, I am a person who has a strong value around freedom and independence and control.  And in many ways designed and created a life before I met this disease that absolutely allowed for that. And I think as soon as our family got this diagnosis and started this journey, I felt a lot of things you're talking about because her disease was not something I designed and planned for in my life. And it was not in my, it was not on my trajectory and that's life. So, I do think that I found an opportunity to look at how I could expand and grow as a person, but I constantly felt my values of freedom and independence being stepped on on this journey and had to really work for ways to kind of find a way to honor those outside of my reality of being a caretaker.

 Shoshawna Rainwater (20:329) 

I appreciate you naming that. I think it's a really beautiful point because when we are caring for a person with dementia, we have a lot less control over our own limits, our own boundaries. We'll talk about boundaries throughout this podcast and the importance of having them. And more importantly, as Glennon Doyle says, “holding them.” That's the hard part, holding them. 

 But the reality is in the dementia landscape, we have less control as caregivers around our limits and our boundaries. And some caregivers report feeling like they're almost like firefighters, right? They feel like they're always on alert. They don't know when the next call is gonna come in. They don't know when the next sort of urgent issue is going to come in. And they don't know when the alarm is going to go off. And so it makes sort of checking out from this role–even episodically to sort of restore oneself–it makes it more challenging and probably is a good rationale for why, when possible and wherever possible, we want to have a team so that we can step away at times, restore ourselves, attend to ourselves. But it's difficult, especially for those of us who like spontaneity and freedom. I mean, when I hear freedom, I also think what comes with freedom is often spontaneity. 

Shoshawna Rainwater (21:51) 

And spontaneity is harder to come by when we're caregivers for a person with dementia. 

 Rachel Coady (21:52) 

Positive spontaneity, guess I would say is harder to come by.

Shoshawna Rainwater (22:00) 

Yeah, yeah, yeah, yeah, there's lots of unknown spontaneity that crops its head up.  But, yeah, and most of us like to have some sort of semblance of control over our lives. I agree there can be some difficulties with maintaining that sense of control as caregivers in this disease landscape.

Rachel Coady (22:28) 

Once you helped me and my family unlock the “team” concept of how we were going to navigate the disease versus me being responsible for everything, it was a little bit of a mind shift for me. And it really opened up, more choice and not to say that people could step in and take it over and everything would be fine, but with support, with awareness for other people and what they could contribute or how they could help us, I could find what I called “micro moments” of freedom, micro moments of choice, that really helped me feel restored, feel like I still had some assemblance of a schedule or normalcy in the hardest parts of her experience. And so, I really do think that there are ways for people to find moments for themselves, moments to honor the values they have that this disease might feel like it's taking away. And there's a way to go through this that can help all caregivers maintain some sense of self and wellbeing that's really essential to get through the journey of what dementia brings.

Shoshawna Rainwater (23:34) 

I think one of the important distinctions to make here, Rachel, as we're talking about the “team” concept and this is something that I learned from Dr. Marion Hodges, who was a geriatrician with a health system that I worked for here in Oregon. And talking about this “two team” concept; we're actually talking about the possibility of developing a team of support for your loved one and the possibility and potential for developing a team of support for yourself. 

 And I want to be really realistic that some people's socioeconomic situations may not lend itself to having a really robust hired team for their loved one. And if that's the case, that's reality. And at the same time, there's a separate team whose job is just to help support you as the caregiver that I believe is available to people regardless of socioeconomic status or the affordability piece, this community being one of those team members.

 Rachel Coady (24:47) 

So, one of the things that we want to offer our listeners today is some support in navigating and establishing which teams you have. And if you go to our website hopefloatspodcast.com, we've created some tools that you can download. The first one is determining your team as the care provider. So, we recommend making kind of a map of social support as a resource for you that you might need.  And it could be chosen family, it could be colleagues. It could be neighbors. It can be, on my map. had some celebrities whose spirit and energy I just wanted to channel on my hardest days. I personally chose Dolly Parton to be on my team. But, welcome that energy, welcome a feeling of whoever, whatever supports you can be on your team in this. And the value of it is not just that you write it down and kind of become aware of it, but that you have it around you to remind you. So, I actually put my team up in my office at home or on my fridge at times to remind myself on my toughest days and the hardest moments in uncertainty that I wasn't alone. And that is true for all of us. You do not have to be alone in this experience. 

 And you actually have people and heroes and community members and family members around you, including also your wellbeing team–it could include your doctor, could include a therapist or a yoga classmate. But include in your team those that you feel like can help get you to your best space in your toughest times. And you'll have a sense of their support and even can reach out and let some people in your life know that you consider them on your team in this journey and let them be aware that you believe their support can help you. So, take this tool, write out who's on your team. You can make it a big team, whatever you need that will help you feel aware and supported by those around you that could be a part of this journey with you. 

 And then the second tool is really to create a sense of the team for your loved one. You know, who's on their team?  That could be their family members, their friends. It could be their doctors. It could be resources that exist in your community for people with brain changes. But think through all the people that can be a part of the care team for your loved one. That isn't just you. It might not just be immediate family. It might be expansive. We were very lucky to have lifetime friends that were able to step in and help with my mom in some of the early stages. And we asked for that help, which is sometimes hard for us to ask for, but can be crucial. And we found many people were able to and willing to offer support and that meant a lot to them to get to help support my mom in her challenging times. 

 And then the final thing that I think is really beneficial actually for everybody, but especially for caregivers is a tool that helps you create a self-care list of the things you do that make you feel good; and they can be small things. It can be a walk outside, it can be taking a warm shower or bath, i t can be having coffee with a friend that you haven't caught up with in a while, sitting in quiet, you know doing a self-care treatment, going to a movie.  But when you can make a list of what feels good for you when you do it and whatever it is, big or small you can include on the list. But this is a really valuable tool for you when you're going through this disease on great days and on hard days to look at ways that you can celebrate, reward, give yourself some relief and restoration on your caretaking journey. 

 You don't have to have a bad day to do a nice thing for yourself. but it is great to remember when you're really feeling worn down by what's going on that you have a list at the ready of things that you can do that help you feel good. And I promise you, if you do one of the things on those lists, instead of just scrolling the internet or sitting alone, it will help. These are micro-moments where you can do something for you and it will make you feel like you're at the center of your care also and that you taking care of you is still a priority. And these small acts can really add up to being very helpful. So, make your self-care list and put on it big and small things that can help and then let it be a resource to you as you go through the journey and find ways to take care of you as you navigate dementia and caregiving.

 Shoshawna Rainwater (29:40) 

I love that, Rachel.  Thank you so much for bringing those practical tools and resources to our listeners.

 Today we talked a lot about the kind of the general overview of the caregiver's world and caregiver role and some of the common experiences for us as caregivers caring for a person with dementia. And then we also talked about those practical tools, those micro-moments of support for ourselves. 

 On our next episode, we'll be talking about the process of seeking diagnosis when you feel like, or you just know something is not quite right with your loved one and we'll talk about that process and how to face some hard changes that might lay ahead.

 Rachel Coady (30:25) 

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 (30:39) 

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 (30:52) 

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