Self-Compassion and Gratitude for Caregivers

In this episode of Hope Floats, hosts Shoshawna Rainwater Rainwater and Rachel Coady discuss the challenges faced by caregivers caring for individuals with dementia. They emphasize the importance of acknowledging the hard work caregivers do, the need for self-compassion, and the significance of reflecting on the past year while setting intentions for the new year. The conversation also includes practical tips for supporting caregivers and highlights the value of simply listening to their experiences. The episode concludes with a look ahead to future topics and episodes.

Takeaways

• Acknowledging the hard work of caregivers is essential.
• Self-compassion can help caregivers manage their emotional well-being.
• Reflecting on the past year can provide valuable insights.
• Setting intentions for the new year can foster personal growth.
• Support from others is crucial for primary caregivers.
• Listening to caregivers without trying to fix their problems is a valuable gift.
• Caregivers often forget to acknowledge their own challenges and successes.
• Practicing self-care can be complex for caregivers but is necessary.
• Small moments of joy can be found even in difficult times.
• The Hope Floats community aims to provide ongoing support and resources for caregivers.

Transcript

Shoshawna Rainwater  (00:05)

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

Rachel Coady (00:13)

And I'm Rachel Coady. On today's episode, we're going to talk about acknowledging and appreciating all that you've done and are doing this year as a caregiver, as well as look ahead at what you might want to think about for the new year. We'll talk about the importance of asking for and receiving help, as well as share some ways that you can celebrate and appreciate yourself for all that you're doing. 

It's been a big year, and it deserves a moment to be recognized. So let's jump in.

Shoshawna Rainwater (00:46)

Hi Rachel. 

Rachel Coady (00:48)

Hey, how are you today?

Shoshawna Rainwater (00:49)

I'm pretty good. How are you doing?

Rachel Coady (00:51)

I'm good. Yeah, I'm excited to get to be here with our listeners and talk a little bit about acknowledgement and care of our caregivers.

Shoshawna Rainwater (00:59)

Yeah. Boy, really coming into this recording today with a lot of gratitude for our listeners and for all that they're doing. Since I last saw you, Rachel, I had a chance to visit with my mom, which required a couple of day trip to visiting her where she resides. She lives in a care setting several hours from me and she's normally watched over on a day-to-day basis by my younger sister, who does an amazing job of giving daily touches to my mom to make sure her life is going as well as it can be.  And younger sister took a very well-deserved time away. She and her family were able to get out of town and it was a short visit and it was a really hard visit. And I was reflecting. I had a lot of time on the drive back home to reflect on why it was so difficult. And I think some of the challenges really had to do with some of the experiences that are common in dementia that we touched on in Episode 7, on ambiguous loss.  And recognizing that being with my mom in that space, well, we can have contented moments together. And I think a good positive exchange or outing. It's difficult because she really does not know who I am.  And being with her sort of tests my the limits of my sort of understanding and my sense of graciousness and how I show up in this disease landscape. 

I question whether or not my travels there and my time with her was really worth the benefit or the burden because after a three-day intensive of being with her, she asked me, “have I seen you before? Have you been here before?” So, she didn't have recollection of our time together. And the clinical part of me knows that that's not maybe what it's about. It's not that I can expect she will retain or remember positive interactions, but rather that in the moment she's feeling content and cared for and loved. The sort of professional clinical brain that I have understands that. And the daughter brain/caregiver brain has a harder time with that. 

So I wanted to just talk today about this experience from a caregiver perspective. I want to just circle back to acknowledging how difficult and challenging this work is to do, particularly on a day-to-day basis for those listeners who are not getting breaks regularly or who are not able to step away from their role. It is an incredibly difficult role. And I just had a good reminder of how hard that is in this recent trip. 

Rachel Coady (04:13)

Yeah.

Shoshawna Rainwater (04:15)

And then the other thing that I was noticing, Rachel, is just my intolerance of my inability or of the challenges I was having in being sort of graciously present for my mom. I really quickly went to a place of self-criticism and feeling like I should be doing better.

Rachel Coady (04:35)

Hmm. I think that is so common on this journey and what you're sharing is that you were met with your mom's ability being something kind of different than you expected. And then this instant need to adapt and work with her on that, meet her there. And then also to have patience and grace for yourself in that quick pivot and what kind of caretaking and caregiver can you be. It's a lot to manage in the moment of what you're doing.

Shoshawna Rainwater (05:05)

Yeah, I appreciate you naming that because it did feel like a lot and I was really sort of surprised and a little bit dismayed at my inability to be so– to stay out of self-criticism. And I wonder if this isn't something that a lot of caregivers struggle with. 

Rachel Coady (05:27)

Yeah.

Shoshawna Rainwater (05:28)

And it made me curious about the concept of “self-compassion.” And so, as I do, I went down a bit of a rabbit hole looking into what is self-compassion and how can I begin to understand that better and how it may help me as a caregiver and as a daughter. And then very quickly came across Kristin Neff's work. Dr. Kristin Neff is a compassion, self-compassion researcher.

And then as I was looking at her information, saw that there was a 90-minute training on self-compassion. So I signed up for it and took it.

Rachel Coady (06:06)

Right on time.  That's great.

Shoshawna Rainwater (06:09) 

I know it was like, it just got offered to me on a bit of a platter there. And it was good timing and boy, it really helped me begin to understand that in order, I think for me, to be able to show up in the best way possible in this role of carer for a person with dementia, I may need to be starting with compassion for myself. 

Rachel Coady (06:34)

Yeah, beautiful.

Shoshawna Rainwater (06:37)

So, you know we can spend time next season of the podcast and in the coming year further unpacking self-compassion, but I wanted to name that I think it's a really valuable tool or way of thinking that can be helpful to us as caregivers. And I'll just give a quick summary of the training, which involved learning and understanding that it's very normal for us to have compassion for other people who are suffering, right? 

Rachel Coady (07:10)

Yes. 

Shoshawna Rainwater (07:11)

Responding with kindness and understanding when others are suffering is part of how we're hardwired as humans because of our sort of collective need for survival way back when in early human history. And so caring for each other is very hardwired into us, but caring for ourselves is not, does not come as easily. And for some of us, the self-criticism is very strong. And so, Kristin Neff's work is really designed around responding with kindness and understanding when faced with our own real or perceived shortcomings. 

And there was an interesting exercise that they invited us to do, which was to envision or think about a person that you care about who is going through a hard time and maybe not think about someone that you are caring for or a family member–because those relationships can be more complex and a little bit fraught–but rather think about a good friend who might be suffering or struggling and imagine how do you show up for them? Including what do you say to them? What kinds of words do you choose? What kind of posture does your body take on as you are sitting sort of knee to knee with them? What does the tone of your voice sound like? How are you showing up? What demeanor or qualities are you bringing to the interaction? And I could very quickly envision kind of how I would do that for a friend.

Rachel Coady (08:50)

Yeah, you've done that for me. You're a great friend in struggling times and hard times.

Shoshawna Rainwater (08:53  )

Well, same, same as you. I know you know how to show up in that way. But then the challenging part, Rachel, was then the next question, which was “how do we show up when we are the ones struggling?  When I'm the one struggling, do I show up for myself with the same tone, the same posture, the same carefully chosen words, tone of voice, demeanor?  How much time and energy do I spend caring sort of graciously for myself in the way that I would care for a friend?” And the third question was, “is there a difference in how you show up for others versus how you show up for self?” And I was like, “oh, hell yeah!”

Rachel Coady (09:36)

Yep. Yeah, I think that's really human. I love this model because it is so easy for many of us to get in the mindset of how we show up for our great friend, or partner, to a person in need. So you can really feel that contrast. “I can do this for you, but if I'm the one sitting in the chair facing me, I'm probably my lowest priority.” 

Shoshawna Rainwater (10:01)

Yeah.

Rachel Coady (10:01)

I'm not giving myself a lot of grace. I'm not giving myself the benefit of the doubt. Many people, myself included, have very high expectations for ourselves. And so we're doing something extraordinarily difficult, like a once-in-a-lifetime challenge as being caregivers. And we really forget to acknowledge that, “hey, I'm doing something really hard and I'm doing my best and I'm giving myself like zero room to acknowledge that.”  

Shoshawna Rainwater (10:28)

Yeah.

Rachel Coady (10:28)

So I'm really glad you're bringing that up because that is such an important moment to take. It feels like a superpower kind of that you need to be a caregiver is to have a practice of self-care and self-acknowledgement as you're doing it.

Shoshawna Rainwater (10:40)

Yeah, I'm really excited, Rachel, for you and I to explore Kristin Neff's work further and be able to bring some of these things to our listeners, and also encouraging them to go to Kristin Neff's self-compassion.org website and explore some of these things for themselves, including taking a self-compassion, what would we call that?  Like a…

Rachel Coady (11:02)

An analysis or audit. I took it. So we'll put the link to Kristin Neff's site on our site hopefloatspodcast.com. 

Shoshawna Rainwater (11:10)

How'd you do?

Rachel Coady (11:11)

Um… I found that I am, I still have a lot of work to do in self-compassion. I did kind of okay in some areas, and about 50% of the questions or analysis, I am pretty low ranked on how I'm doing it and I really learned from that experience. So we’ll be sure to share that and more people can explore ways that they can get better and better at self-compassion.

Shoshawna Rainwater (11:31)

Yeah, I think it's a really good place for us to spend some of our valuable time and energy as caregivers. I feel some hope for growth in this area and some excitement about how we as a community, a Hope Floats community, can be kinder to ourselves in this really critical and difficult role.

Rachel Coady (13:43.83)

I agree. There's a lot of room. I'm not in a primary caregiving role any longer with dementia. I have people I support who are still going through this disease in my family, but I think that the work continues beyond being caregivers, actually. In our society we are really better at acknowledging other people's work or giving other people grace than ourselves. And so this idea of taking care of ourselves–especially when we're in these roles as caregivers–is so crucial. 

MUSIC TRANSITION

Rachel Coady (12:25)

There's been so much that has happened for many of our listeners and for both of us in 2024. But when you look at and really acknowledge everything that you've done, how you've been navigating this, how you've been supporting caretaking, how you have supported your loved ones, how you're probably managing life outside of this role and being a caretaker of someone with dementia, it's just a big year. And it was really important to us that we stop and do some things to acknowledge this with our listeners. 

So one of the things that I think about in coaching with clients towards the end of the year is that we pause for a moment and really look at what were some of the highs and the lows. What are some of the things that we're most proud of this year? Because again, it's actually easier for our brains to remember the really hard things or the things that didn't go well or the things that were scary; but if we can invite ourselves to really think more about the other side of this year and what happened, it helps affirm and build almost like a peace and a confidence in who we are and how we're growing and how we're going through these parts of our lives. 

It is so rare as adults that we stop and acknowledge where we are and what we're doing and what we've been holding and what we've been managing. We do this really well for kids that we're around and we're encouraging or we're raising. But we actually could benefit a lot from doing this more for each other as adults, too. And so I wanted to share today an exercise that I do in coaching with clients. It’s called “Your Annual Review.” And it's a time for people to take out a piece of paper and write down the 12 different months of the year and to really do kind of a personal reflection and audit of what are all the things month by month that happened this year. We'll put a model for this as a PDF on our website, HopeFloatsPodcast.com that you can download.  

The first round that we do is to have you look at those 12 months and off the top of your head, write down what happened each month that you can remember. And this will prove my point that we'll remember the significant/difficult/hardship/transitional moments of the year, probably first without challenge. And maybe if you give it a little more thought, you might go, “oh, we did the family vacation then, or this person came to visit then,” or something like that. But it's hard to remember the contents of a year.

Shoshawna Rainwater (14:54)

Yeah.

Rachel Coady (14:55)

So then the second part of the exercise is you actually take out your phone or your personal calendar and you reference pictures and you go back through your year, month-by-month and you start to see, “wow, all these things happened: I took that class, I did this fun dinner with friends. I learned a new skill” maybe; but different additive things that went on in the year beyond all of the weight of being caregivers and just that role.  And it helps you see a holistic picture and it might bring up some feelings of other things that were hard about the year, too. I'm not saying it's all rosy. 

But when you look at the comprehensive total of all the things this year, you start to remember the whole picture of life and where you are. And there's some good prompts to look at as you do that after you've kind of filled out this year and think about your annual review.  Just see what you notice. See what comes up for you. See how it feels to kind of look back on all of it. And then the other question that I invite clients to think about is “when you see this whole picture, what is it that you want to tell yourself about this year? What are the things that you really value or want to hold onto from what this year gave you and the things that you endured and the things that you accomplished?”

Shoshawna Rainwater (16:15)

Hmm.

Rachel Coady (16:16)

And it's funny, because I actually use similar to the example you're just using, I say, “now, if you were your best friend and you looked at this together, or a best friend was sharing this with you, what advice would you have for your friend as the year comes to a close? What would you say to your friend about their year? And what is one thing you'd want for your friend in the new year?” And again, I think that putting ourselves in that kind of third-party position can really invite us to be the compassionate, grace-giving person that we need to be for ourselves in our lives.

Shoshawna Rainwater (16:52)

Mmm, I love that.

Rachel Coady (16:54)

And then finally, kind of after you've distilled all that and you sit with it, just thinking about what are some of the things that you want to say to yourself for the year ahead and writing those down because the holidays are busy and it's been a busy year and a big year, but, just giving yourself that moment of acknowledgment and really pausing to sit with it can be really, really helpful and almost like a gift to yourself as we walk into the new year.

Shoshawna Rainwater (17:18)

Rachel, you and I have talked about how we don't always love that January is sort of the official new year in mainstream culture because it's a strange time to make–

Rachel Coady (17:31)

Right, it's like the dead of winter. It's so dark and so cold where we live. Yeah, I agree.

Shoshawna Rainwater (17:36)

Yeah, there are many cultures that don't celebrate New Year right now, right. 

Rachel Coady (17:43)

Yes.

Shoshawna Rainwater (17:44)

But I appreciate this idea, though, of at the end of this calendar year, really assessing and looking back over these 12 months. And I appreciate the call out that our brains are a little bit hardwired to focus on the hard things, right? I think that's called “negativity bias.” 

Rachel Coady (18:03)

Yeah.

Shoshawna Rainwater (18:04)

Our brains are hardwired to pay attention to those things that are hard, dangerous, bad, awful. But likely our year–365 days–have actually been peppered with other things besides the hard things. So I appreciate that we're not asking people to just don a rose-colored glasses kind of perspective, but actually just make space for how there are good and bad things that happen over a year's time.

Rachel Coady (18:30)

Yes. And I'll share also Showshana that when I did this exercise when I was doing primary caregiving, I tried to be very aware of the small wonders of my year. 

Shoshawna Rainwater (18:42)

Say more about what those might look like or what those looked like for you. I know you've mentioned photographing clouds, which I think is such a beautiful thing.

Rachel Coady (18:51)

Yeah, I think before I had the experience of being a caregiver, I would have marked events in my year that were significant, they had bigger actions; they were trips or they were big career accomplishments, or they were significant adventures.  And many of those things changed for me because I couldn't leave and couldn't go do a lot of things when I had someone that I was caregiving for, my mom. And instead I started to see many more things very close to me, very simple, natural things that were happening with more wonder and awe and appreciation because they were available to me. 

Shoshawna Rainwater (19:32)

Yeah.

Rachel Coady (19:33)

So, being in forests and hiking, on a more regular basis as a kind of mental health step for myself became a way that I really started to notice new plants and new blossoms and new birds. Those are things that I probably wasn't paying as close attention to, but became very valuable gifts to me in my reprieval time from being a caregiver. Dinners with friends, friends who came to visit even though life was complicated that year–or a couple of years–meant a great deal to me, more than maybe ways that I honestly probably took it for granted before the journey of being a primary caregiver. 

So I think that when I look back at, particularly the last year of my mom's life, I could see a lot more appreciation for the life that I was able to access and experience around me than potentially before that time and that experience. And I just think it's a nice way to become aware of our year.

Shoshawna Rainwater (20:32)

Yeah, I can see that. I think it's a good sort of natural segue into something that I was thinking about with regards to the difference between “self-care” and “self-compassion.” Self-care, I think is a term many of us are very familiar with and has to do with care that's provided for you by you. And typically involves things that you might do if you have the ability to step off the job or off the clock as a caregiver. 

I think of self-care things like for me, it would be going to get a massage or going to a paper craft shop or those things that bring me joy; but they happen in the context of being able to step away from the role of caregiver, which for many people, is complicated and not easy to do because the person they're caring for requires the presence of another human to keep them safe and well.  

Rachel Coady (21:36)

Mm-hmm.

Shoshawna Rainwater (21:36)

And even stepping away for short amounts of time is difficult. So self-care is important and I recognize it's likely a little bit more complex to fold into one's life because it really depends a bit on external circumstances.

One of the things that self-compassion can offer us is the ability to do things for ourselves while we are still on the job. So in those moments where it's difficult to step away, to perform self care, we can still show up in that moment in the caregiving role, attending to our own needs. And that

looks like things like kind self-dialogue, a compassionate self-touch, meaning like you put your hand over your heart.  You know, we are hardwired as humans to respond to touch… 

Rachel Coady (22:33)

Mm-hmm.

Shoshawna Rainwater (22:34)

… versus when we think about caring for a baby, a baby does not have the ability to be reassured by the content of our words, right? We can use soothing tone, but what we're really doing is using soothing touch to comfort a baby. So it's very hardwired into us as humans to feel better when we have touch. Getting out for two hours to get a massage may be very complex thing to do for us as caregivers, but the experience of just giving ourselves compassionate self-touch is available to us at any time.

When you talked about going on hikes, it made me think about this concept of “outdorphins.”  I don't know if you've heard people talk about that, but just stepping outside. 

Rachel Coady (23:17)

Yeah, I love that term. Yeah.

Shoshawna Rainwater (23:20)

So instead of endorphins, which many of us have heard about, outdorphins, just being outside, I would hope that for most of our listeners, the ability to simply step outside, look up, maybe take some deep breaths is available to most people would be my hope. 

Rachel Coady (23:38)

And that's an act of self-compassion to give yourself that when you need it. Yeah.

Shoshawna Rainwater (23:43)

Yeah, and I think there are some gendered norms around taking care of oneself.  There are many men doing important caregiving work and doing it very well. And I think women tend to feel less entitled to meet our own needs and that self-sacrifice is really normal and that self-care can be seen as something sort of frivolous or selfish or self-involved. So I'm just naming that for those listeners who identify as female that we may be sort of socialized to not give ourselves as much permission to take care of ourselves 

Rachel Coady (24:23)

And priority.

 Shoshawna Rainwater (24:24)

And priority, yeah.  So some of those off-the-job strategies–like going to a movie or receiving a massage–may be hard to do, but on-the-job, self-care strategies may be available to us. And we'll spend some time in our next season really talking about folding in some of those tactics during our day. 

And then I think the last piece I wanted to add here about ways to support a primary caregiver. If you are listening and you are a secondary support caregiver, one of the things that I hear in my clinical practice from caregivers–primary frontline caregivers–is that the most important gift other people can give them is time and or respite or reprieve–the ability to step away even for short periods from in this role.

And so just some ideas for how you could provide some support for a primary caregiver would be offering things like offer to cook a meal for them, offer to mow the lawn if that's available to you, do yard work, coupon or gift card for a house cleaning. So other things that would require secondary caregiver to maybe also be present with the person with dementia so that the primary caregiver could step away.  You could offer your presence while the other person is given the opportunity to go to a restaurant. So maybe family gives that person a gift card, or to step out for a massage or those kinds of things, with the reassurance that the secondary caregiver plans to be there with the person who needs the care so that the other person, primary person, can step away.

Rachel Coady (26:06)

Can I offer one more thing to that list that I'm remembering? 

Shoshawna Rainwater (26:10)

Yeah.

Rachel Coady (26:10)

I think one of the great gifts you can give someone who's a caregiver is the offer to listen. And I remember having people around me that were very generous in letting me almost break down, but get really honest and raw about what I was experiencing as a caregiver. And the key was that they listened and they didn't try to make it better and they didn't try to solve it. 

Shoshawna Rainwater (26:40)

Yeah.

Rachel Coady (26:41)

They just said, “hey, what you're doing, we don't always talk about, but it's really hard and I want to hear about and know more about how you're doing with caregiving.” And it was this enormous gift to be able to get real with myself and with them about that. And it actually helped lift some of the load to just be given some space and time to be listened to. 

So at a very minimal level, it's not always easy or comfortable, but if you know a caregiver who's carrying a lot and potentially not talking about it a lot with you, making that offer can be an enormous gift to give someone and allows the caregiver to really have a moment of acknowledgment for everything that they've been doing and carrying through this experience.

Shoshawna Rainwater (27:27)

I think that's incredibly valuable. And the piece around not trying to fix it is important because if this was fixable, you would have already, as the primary caregiver figured that out. 

Rachel Coady (27:42)

Yeah.

Shoshawna Rainwater (27:43)

And the fix is in the hearing and the holding and the showing up and the listening, is what I hear you saying.

Rachel Coady (27:51)

Yeah, people just need to be heard. And at the end of it, if you want to fix it and you're struggling with that, I'll let you borrow this language, which is “thank you for opening up and talking with me about this. It sounds like you're doing a lot.” You know, “it means a lot to me that you would tell me more about the experience you're having.” Just acknowledging it, you know, can go a long way.

Shoshawna Rainwater (28:14)

That's beautiful. 

So on today's episode, we discussed the importance of self-care and self-compassion in this journey as caregivers. We explored some ways to take time and reflect on the year. Rachel's offered up a really helpful tool that you can find on our website. And we encourage you to think about some ways to look forward into the future in the next year so that you can prioritize yourself and also offered some ways to support the primary caregivers in your life if you are a person more on the periphery.

Rachel Coady (28:47)

Yeah, we're looking forward to a new year with more content and more episodes for our listeners, as well as more engagement with guests and covering topics that matter to you. So Hope Floats is going to take a brief end of year break, and we'll be back in early 2025 with new episodes that break down the different stages of early, mid, and late-stage dementia.  We'll also spend an episode talking about the important concept of “anosognosia” in dementia. And finally, we really want to reach out to listeners and ask you to help us know what are the topics that are top of mind for you? What kinds of things could we be covering on the Hope Floats podcast that would help you as you navigate caregiving and dementia. 

Please reach out to us through our website at hopefloatspodcast.com and we'll look forward to what 2025 can hold for all of us. Until then, take care, be well, and most of all, thank you for everything that you're doing.

Shoshawna Rainwater (29:48)

Thanks, everyone.

Rachel Coady (29:52) 

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  (30:06) 

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  (30:20) 

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