Reimagining Caregiving

In this episode, Rachel Coady and Shoshawna Rainwater explore the emotional, financial, and social burdens in the current dementia caregivers role and emphasize the need for a “make-over” that could bring better awareness, support and acknowledgement culturally for caregivers. The conversation highlights innovative ideas for community engagement, workplace support, and the importance of recognizing caregiving as a shared responsibility. They also touch on the lack of positive media representation of caregiving experiences, the hope for a care-first culture and the need for better cultural narratives surrounding these experiences. They discuss the economic implications of caregiving, and the importance of community support through initiatives like memory cafes. The conversation emphasizes the need for a cultural shift in how we view caregiving, advocating for greater acknowledgment and support for family caregivers.

Takeaways

• There are nearly 12 million unpaid caregivers in the U.S.
• Caregiving is often hard, lonely, and expensive. Many caregivers feel undervalued and misunderstood.
• 83% of caregiving is done by family members and friends.
• Crisis caregiving is more supported and recognized culturally and systemically than creeping caregiving.
• Cultural shifts are needed to support caregivers better.
• Celebrating caregivers' journeys can provide much-needed support. Innovative ideas like caregiver showers can help normalize caregiving.
• Public education campaigns could foster empathy towards aging and caregiving.
• Normalizing discussions about caregiving can reduce feelings of isolation.
• Economic implications of caregiving are significant and often overlooked.
• Memory cafes provide essential community support for caregivers and those with cognitive changes.
• The Five A's framework offers practical ways to support family caregivers.
• Community engagement is crucial for improving the caregiving experience.
• Advocacy for caregivers could motivate systemic changes in support.

Transcript

Shoshawna Rainwater (00:05)

Welcome to Hope Floats, a podcast for people who are caring for a person with dementia. I'm Shoshawna Rainwater, social worker and dementia consultant based in Portland, Oregon. I'm also the daughter of a person living with dementia.

Rachel Coady (00:20)

And I'm Rachel Coady, a Professional Certified Coach and the daughter and primary caregiver for a person who had dementia.

Shoshawna Rainwater (00:27)

If you're enjoying listening to Hope Floats podcast, we now have a new way you can support us. In addition to subscribing and sharing our episodes with others, you can now go to our site and make a Venmo donation to @HopeFloatspodcast. This helps us cover our production costs for these episodes and the cultivation of resources. Thanks so much.

Rachel Coady (00:49)

On today's episode, we want to talk about re-imagining caregiving. We know we can't cure the disease yet or change the bigger healthcare systems that are working for patients with cognitive changes and dementia. But today we want to think about ways we could re-imagine caregiving in the world we're in and offer some ideas for ways we think we could make this better for ourselves and the caregivers we know. We hypothesize that the key to this is repositioning what being a caregiver in our communities and culture looks like in ways that can then help each other get more support, including more community engagement from one another. So let's jump in. 

Shoshawna, we know caregiving is rough right now. How do you describe kind of what today's caregiving experience looks like?

Shoshawna Rainwater (01:46)

Sure. I've come to think about caregiving in certain ways because it's what I hear from people who are doing the caregiving. So I feel really fortunate in some ways to be able to hear firsthand from people who are doing difficult dementia caregiving how the experience is going for them. And here's what they primarily say. It's hard. It's lonely. 

Rachel Coady (02:14)

Mm-hmm.

Shoshawna Rainwater (02:15)

It's expensive. And it feels very undervalued and misunderstood by others.

Rachel Coady (02:24)

Yeah, we've talked a lot about in this disease journey, it is different than others. You know, I don't think caregiving with any disease or life changes is easy, but there are some real unique parts of dementia caregiving that, obviously that's why we've made this podcast. We know things like support and hope and staying present and trying to do self care and finding support groups are all helpful elements that exist in the realm of caregiving culture today. But it just feels like this is a journey that is constantly changing. It's up and down. And I think for a while now, you and I have just been thinking like, what's going on for people and how can navigating this experience get better? 

We know from the Alzheimer's Association 2025 Facts and Figures report that's just come out that there are nearly 12 million Americans that are providing unpaid care for family members or friends with dementia. 

Shoshawna Rainwater (03:25)

It's a lot of people. 

Rachel Coady (03:27)

It's a lot of people and a lot of people who are struggling through this disease. And I think one of the things we talk about is largely people are kind of going through this alone. They don't feel like there's 12 million other people in this with them.

Shoshawna Rainwater (03:39)

Yeah.

Rachel Coady (03:40)

Caregivers of people with Alzheimer's and other dementias are providing an estimated 19.2 billion hours of informal, meaning unpaid assistance. That equates to a contribution at like a national level of like 413 billion. It's, it's unbelievable amounts of care that people are putting into this. And a lot of that care–83% of that–is coming from family members, friends, and other unpaid caregivers. So it's this enormous resource that is really needed and under-acknowledged and under-compensated. And I think in that, it kind of does position it as more of a real hardship and burden.

And then, like a quarter of the dementia caregivers are “sandwich generation” caregivers. So these are people in homes raising children and caring for parents. Two thirds of these dementia caregivers are women. Over a third of dementia caregivers in the United States are daughters caring for a parent. So it does skew to be more female caregivers. And caregiving responsibility and in-home caregiving is significantly greater in BIPOC communities than their White counterparts. 

So this is really an in-home, familial experience for a lot of people. Again, that just can feel under-supported. And if you're in the work years, career years of your life, very few places of employment are offering paid leave or family care leave to their employees.

Shoshawna Rainwater (05:12)

Mm-hmm.

Rachel Coady (05:13)

And if they do, one of the challenges is that this isn't a disease that's over after a series of treatments or surgeries. This can be up to 12-year disease for families. And so it's hard for employers to give a caregiver leave for that time. But all of these, all these truths, all of this data kind of led us to this conversation today and really wanting to look at where we are with caregiving and what could be.

Shoshawna Rainwater (05:39)

I think too, Rachel, one of the things that has been hard for me is feeling less hopeful about big system changes coming down the pike for us to make things easier. 

Rachel Coady (5:54)

Yeah, we don't really see signal of this being a priority.

Shoshawna Rainwater (05:57)

Yeah. And so part of what I think I am left with is, well, if we can't create big changes in our system at this point in time, what can we do? What do we have control over as human beings and as people doing this really hard work? 

Rachel Coady (06:15)

Mm-hmm.

Shoshawna Rainwater (06:15)

I was thinking about some of Dr. Aaron Blight's work. He's a researcher who has done a lot of work in the caregiving realm.  And one of the things Dr. Blight talks about is it matters a lot how we came as caregivers to be in this role. And Dr. Blight talks about kind of the two ways most people come to caregiving, which is usually either by what he refers to as “caregiving creep,” meaning kind of slow to grow, kind of insidious--meaning that it creeps in and it's there before you really know it. 

Rachel Coady (06:54)

Mm-hmm.

Shoshawna Rainwater (06:55)

And that's more of the experience when we have a dementia diagnosis, because dementia is typically a very slow-growing process. The other way a lot of people come to caregiving is through what Dr. Blight refers to as “caregiving crisis.” So maybe a fractured hip or a stroke.

 Rachel Coady (07:13)

Like a major event. 

Shoshawna Rainwater (07:14)

Yeah, like a major health event that then creates a very new situation or way of having to approach caregiving.

Rachel Coady (07:23)

And I would say in the “crisis caregiver” moment, that's actually where things like paid family leave or medical leave or something in our workplaces and communities, quote unquote, “works” and gives people like a very clear way to articulate, “you know, my family member had a stroke, I'm taking leave while I set them up.”  Or, you know, surgery needs to happen.  

Shoshawna Rainwater (07:43)

Right, right.

Rachel Coady (07:47)

But when it's “creep,” there's not a very distinct moment in time where you go, “oh, this happened and therefore I need X amount of time off or something.”  It's slow moving. It's oftentimes we know in this disease like showing up surprising us like, “Oh we're here?” 

Shoshawna Rainwater (08:05)

Yeah. Yeah.

Rachel Coady (08:06)

“This is happening now; I didn't know this was progressed this far.” So it's a really different acknowledgement. And again, the systems that are hard to change don't really have- we don't really have a plan for that, culturally, for caregivers who come to be caregivers by “creep.”

Shoshawna Rainwater (08:21)

I agree that in our society, it does feel like we do much better with something that is sort of acute and crisis driven. And I think time limited.

Rachel Coady (08:33)

Mm-hmm. Mm-hmm.

Shoshawna Rainwater (08:35)

I don't think our systems want us–or I don't know if it's they don't want to–but they're not designed to support needs over time. 

Rachel Coady (08:39)

Yeah.

Shoshawna Rainwater (08:40)

And they're designed to if they're going to help us at all, it's going to be for these episodic, acute events and then they would like us to recover and get back to– get back to real life. And that's just not the case in dementia, is it?

Rachel Coady (08:51)

Right, and I think it's probably worth acknowledging, like the systems we're referring to or the days were referring to are kind of like mass capitalism and like the mass cultural structures. We're not necessarily speaking to cultural structures because we know between families and different groups of people, there's different understandings about what caretaking is, as well. 

But it is to say, like across this country of the United States, the way that we have systemic support for caregivers–or lack thereof–is really different for the different kinds of roles that bring you into caregiving. 

I think all of this brought us to this feeling and I have been marinating on this for a while, probably since I was doing intensive frontline caregiving is “this whole thing just needs a makeover!”  And like we really need to culturally reconsider what the caregiving part of our life experience could look like and how we could put more value and support into it for caregivers. 

We're working on normalizing talking about being a caregiver still, and that just feels so delayed compared to other major life milestones that we celebrate or acknowledge or systemically support. And we wanted to take today's episode to kind of give ourselves permission to really reimagine and recreate and offer some ideas for how we could all do better with this part of adulthood going forward–from a personal level to a kind of team, family, social level to a workplace level–and really just invite ourselves to imagine in this space and to let our listeners take pieces from this that you can and put them to use.  Go see how we can make these journeys better for people.

So, one of the first thoughts that came to mind for me on this is like in other major life milestones, we have traditions and rituals–and I'm talking mass culture, not kind of individual groups necessarily; but you know, there is this “shower” moment there is, you know, there's a thing for young women now when they're getting their menstrual cycles that they do like moon parties; there are our baby showers when we know a baby is coming there are a couple showers when we know a couple is starting a union and getting married. There are graduation moments where we celebrate the accomplishment and then we get into adulthood and the next thing I feel like we celebrate or acknowledge is retirement–which is not to say it's not important.  But like we have these moments where we gather and show support and celebrate a person. And I want to invite what that could look like if there was a moment where we celebrated a person starting their caregiving journey. 

And again, whether it's “crisis” or “creep” that puts you there, I think there's a really beautiful option to have what I imagine to be, one example could be just a very simple gathering that allows people to acknowledge, “I'm Rachel. I'm about to go into a new chapter of my life where I'm going to be a more dedicated daughter in caregiving to a mother with dementia.” Or “my spouse is starting this disease journey; I'm going to begin caregiving at a different level and I could use acknowledgement and support and a sense of people around me that are going to see this part of me and be here for this.” in the same way that when we bring a child into the world all these people gather with maternal love and support. 

We could do better with this moment. And gift giving could be like future meals or devices that will help a person as dementia progresses or self-care gift certificates. I don't know, but what a beautiful moment to say, “hey, you are here and you're going to go on a journey and you are supported. This is a life- expanding experience to get to support someone in this and you will not be alone in it.” And I just want, I want that for people. I want them to feel that support around them and to not feel so alone at just like a very basic level. 

Shoshawna Rainwater (13:03)

Yeah.  Rachel, you're the first person I've heard talk about this. And it's been on your mind for a while. And I love this idea. And I love the, yeah, sort of the passion and enthusiasm with which you bring this forward. 

Rachel Coady (13:20)

And I had family members and friends who showed up for me and really wanted to support and help. But I think something like this, we could normalize that when you confide in a friend group, “hey, my mom got her diagnosis” or “hey, my spouse is starting to change and I'm worried about what's coming up or dementia diagnosis,” that that friend step in and goes, “let me prepare by hosting a caregiver shower caregiver event for you.”

Shoshawna Rainwater (13:46)

Hmm. Yeah.

Rachel Coady (13:47)

And I think people actually all like to help. They just don't know what they can do. And I think this could just be such a different entryway into navigating care on this journey than what currently feels like a pretty huge hit to the gut and like, “Oh God, what do I do? I'm scrambling. So I want to challenge us to change that culturally. 

If you're listening to this or you know someone who needs to be listening to this, like send this to your people. And, from beyond there,  there's financial ideas that could change. There's workplace models that could change. There's cultural and societal things that we could shift. So let's talk about some of our ideas and listener, if you have ideas, as you're listening to this, send them to us; we want to add to the mix and start to get more and more energy behind how we could reimagine caregiving in our communities and with each other. So we're open to hearing your ideas, too.

Shoshawna Rainwater (14:43)

Some of the financial incentives that might be possible here are to do things like creating tax incentives for home modifications and caregiver expenses, expanding tax credits for those home modifications that will enable us to age in our homes. 

Rachel Coady (14:59)

Yeah, like right now there's a tax credit for having a child, right? And so what if there was a tax credit for doing caregiving with a different family member? Like some, or the changes you have to make in your home to become a caregiver. Those are really light ways to lift the weight of some of the changes people are making when they're moving a loved one in or redesigning spaces to have care in their home.

Shoshawna Rainwater (15:25)

Yeah, and I'm not sure what it takes to create an overhaul of our tax system, but I think it's probably pretty complex. But here's another idea that is more possible and tangible for us as individuals, and it's to create what we might call a “care-share cooperative” where families who are going through something similar pool of resources and their expertise to hire and manage professional caregivers and even share those caregiving duties amongst themselves. So that can be a more sustainable and affordable model than doing individual hiring. And I think it would fundamentally feel less lonesome. 

Rachel Coady (16:06)

Yeah, it's social for the caregiver and the care receiver.

Shoshawna Rainwater (16:09)

Yeah, you know, when my mom was living with me, we had her participate in music therapy, which was awesome. And this music therapist would come to the house. And I had reached out to a friend whose mom was also living with dementia and was in a similar kind of stage as my mom and together we coordinated that the two of our moms would participate in this music program together. So that helped with the cost and also made it six times more fun for these two ladies. 

Rachel Coady (16:47)

Well you think again about people who for childcare combine childcare situations or have support services for groups of kids together? And that's a model that we could borrow in caregiving. And again, the benefit of it not being just one-on-one, but social and interactive for more people who are struggling with cognitive changes, as well as for caregivers to caregiver to be able to connect and talk about, you know, a spouse or a parent or a loved one who's going through this. It just gets more supportive. So smart.

Shoshawna Rainwater (17:20)

Yeah. Yeah.

Rachel Coady (17:22)

I think in the workplace, you know, if you're a caregiver still in your working years and your career, there are ways that we could talk with employers about doing better in this scenario, too. And again, we can't overhaul every system, but I do think whether you're a caregiver right now or you want to advocate for caregivers right now, we could start to ask employers what is included in our paid family leave? Is there a way to include people who are getting into a  caregiving role with long-term creeping care? Could there be caregiving stipends?

You know, we have a flex spending account, could there be some employers again, cover or do incentives towards childcare, could there be any, options for getting extra care, giving support;  having resource groups in the workplace for people who are in this part of their life where employees can, over lunch, connect with one another, or maybe talk about what's going on for them and their caregiving and what they need. 

And just think about any services that could be offered for navigating caregiving as an offering from your employer; those things might not exist right now, but they didn't used to exist for childcare or family support either, and now they do. So these are things that we can do better by looking for opportunities to be inclusive and look out for people on this kind of caregiving journey with dementia.

Shoshawna Rainwater (18:46)

I also think about what it might look like culturally and societally to do this differently. And this idea of “care first culture” would involve promoting a narrative in our culture and society that values caregiving as a fundamental human right.

Rachel Coady (19:06)

Yeah.

Shoshawna Rainwater (19:07)

And not just a human right, but also a responsibility, a collective responsibility, and not just a private family burden.

Rachel Coady (19:16)

Yeah, this is something I feel like we could learn a lot from other cultures because there's honor and complete acceptance and normalcy in being a caregiver, honoring your elders, taking care of the elders in your family in many cultures in the world. It's normal. It’s seen as like an honor and a responsibility versus this thing you're supposed to do on the side, but still be a totally functional contributing adult. And this whole thing of intergenerational care–whether it's raising kids or supporting parents, we just don't put care first as often as we could in kind of the main systems of the culture here. And I think that we all suffer for that, actually. I think honoring caregiving at any point in life, in any model, says that as a culture, taking care of one another and collective well-being matters. And I think we have opportunity to do a lot better.

Shoshawna Rainwater (20:16)

I agree. 

Music transition

Shoshawna Rainwater (20:26)

I was thinking, Rachel, about media representation and I have a hard time thinking about diverse caregiving stories that highlight kind of the positive pieces of caregiving and not just burdensome or sad parts of caregiving. 

Rachel Coady (20:43)

Yeah, it's really interesting. So there's a couple television shows that have intergenerational families and off the top of my head–I'm like, you know, I'm in my middle years so I’m thinking like, there was Golden Girls. That's not intergenerational, but that was four good friends and, know, so in one of their, our three friends and one of their moms living together in Florida. 

Shoshawna Rainwater (21:06)

Yeah.

Rachel Coady (21:07)

Um, and that was a show from a long time ago, but,that wasn't about intergenerational care. wasn't support in there. You know, it's the daughter supporting the mom as she was aging. And then there's shows that do have intergenerational care, but a lot of them are, I'll say this blanket statement: the majority of television shows that feature white family, predominantly white families with white aging parents, the aging parent is often framed as like a burden or a joke or added kind of responsibility. And I would say BIPOC shows that feature intergenerational family often highlight the elders as contributors or co-parents or contributing family members. 

But I think that, there's not oftentimes a family member who's struggling with cognitive issues in a non-funny way. and yeah, there's just not a lot of context about that. They're starting to do movies about people with cognitive changes and documentaries and stuff, but there's no normalcy to it. And yet everybody knows somebody who's experienced this disease and some of the challenges of it.

Shoshawna Rainwater (22:20)

Yeah.

Rachel Coady (21:07)

You know I also, like, again, a cultural element, public education campaigns, ads or campaigns about the realities of aging, of caregiving, of fostering empathy and understanding and preparedness for parents of the elder. Like we talk about this all the time, but nobody really talks to you about the middle years of your life and what caregiving might look like, or what your role of sonhood and daughterhood or spousal responsibility might change as you're getting older. And I think that's a huge miss that we don't normalize it or highlight it. And then when, when you find yourself in that journey, again, you feel very alone. 

Just thinking about ways that we could be more inclusive in this, this part, which by the way,

everybody gets older if we're lucky, right? Nobody doesn't have an aging moment if you get to age through your normal, lifehood. So the fact that we don't talk about this or acknowledge it or prepare people for it is a little mind boggling to me.

Shoshawna Rainwater (23:22)

I heard somebody say once that we really should care about all of the “isms,” because eventually they will affect you. If you live long enough on this planet, everybody will be touched by–and not necessarily in positive ways–but everyone will be impacted by systems that don't support women and caregivers and growing older in America.

Rachel Coady (23:44)

Yeah.

Shoshawna Rainwater (23:45)

And we ought, we collectively as humans ought to care about this because it will likely impact us and affect us first person as we grow older.

Rachel Coady (23:58)

And in a country that absolutely cares about economics, this disease –and I'm not saying this is a reason to care, but it is an input–this disease is a very, very challenging, economically difficult, stress driving experience that really affects family, community and our national economics. And if we did better with systems and better with acceptance and normalizing, we would see the opportunities to lift that economic stress for a lot of people and in that make our communities more fiscally stable. 

Shoshawna Rainwater (24:39)

It would be smart and strategic of us. I mean, those were really big numbers that you quoted at the beginning. It's a lot of money 

Rachel Coady (24:48)

It's a lot of money. 

Shoshawna Rainwater (24:49)

and suffering, right?  It's a lot of suffering, most importantly.

Rachel Coady (24:52)

Yeah, I mean, for us, think much more driven by the suffering and the emotive well-being and spiritual well-being of our listeners. But, you know, some people are really motivated by economics. This is an economically disastrous problem. 

Shoshawna Rainwater (25:04)

Mm-hmm. Mm-hmm.

Rachel Coady (25:06)

And we should, we should work harder at all these different points we could make to make it better for people and better for caregivers. 

Even just considering this idea if we could normalize, you know, we could represent more of this disease journey and culture, we could have campaigns and efforts to help people feel more prepared to understand this is a common part of adulthood. Just overall, like looking at caregiving as a part of our duty, as a part of being good citizens to one another, as a way to engage in your communities. That whole conversation feels, at least where I live, and we're in Portland, Oregon, it feels like we could do better in that space.

Shoshawna Rainwater (25:45)

I've often said, dementia is a disease of autonomy and the challenge with dementia is that, over time, it will require the support of a second person. So, to live in a society that emphasizes autonomy and independence above all other things really sets us up for challenge when that changes for us. It's one of the fundamentally really difficult things about dementia.

Rachel Coady (26:14)

Yeah, it's a collective experience. It's not an individual experience. And I think more ways that we can make this collectively feel a part of kind of a normal adulthood, normal communities. I'm saying “normal” in air quotes, but, the better it would be for all of us and to really raise up that that role of caregiving does for a community and does for a society and does for a culture could be a really new identity around this role.

Shoshawna Rainwater (26:42)

So that's a good little segue into this idea that exists already on these memory cafes, which is a really cool local kind of grassroots movement. There's memory cafes all over the United States now.  And it's a place where a person experiencing cognitive changes and their caregiver–the primary person supporting them–can come and engage with other people, have coffee, have tea, have a bite to eat, enjoy music or an activity.

They're usually a drop-in, once to two times a month kind of experience, but we have them here locally in Portland as there are cafes all over the US. And I've had the experience of attending one and it was just a delightful setting to see people engaging with one another, getting support for one another, and experiencing the joy of community.

Rachel Coady (27:45)

You shared a great article with me, which we'll post on our website under resources; it's from NPR and it's about the power of memory cafes, and, that there's such a beneficial experience for the person who's suffering from cognitive changes and dementia, as well as the caregivers who just get to see other caregivers and, and connect and feel supported and see other people sharing their experience.

And we found that the DementiaFriendsofAmerica.org, which is another site we'll share, has this amazing toolkit of ways that you can start a memory cafe experiences. They offer tools for training staff that work at these facilities of how to work with people with dementia. And it's really an initiative that, like you said, is kind of grassroots and people took on to say, how can we make places and spaces in our communities more inviting to people with who are on the dementia journey? and what kinds of things can we be aware of or look out for to offer the support? 

And like you said they can kind of happen anywhere. Sometimes they're in libraries. Sometimes they're in cafes or restaurants. They can be in community centers. It's really a way for people who are struggling with brain changes to feel okay and normal and have experiences where they can connect with other people who are struggling with some of the same issues and equally for the caregivers to get to connect and feel the support and be seen by other caregivers. So it's like one example of a really significant change that could happen for people if we could normalize more and more of these kinds of spaces and experiences around this disease.

Shoshawna Rainwater (29:26)

I think it also, I hear families often say, “through this experience, people that I thought I could count on really ghosted me” and that they really feel a bit abandoned by others. And one of the things I like about a memory cafe experience is bringing together people who are going through something similar and showing up for one another and saying, “I'm here and to the best of my ability I understand what you're going through because I'm going through it, too.”

Rachel Coady (29:55)

Yeah, just to feel that community is such a improvement in the journey than to go through it feeling alone and isolated. And it was, I mean, I spent some time on that site and it's just inspiring to look at all the ways they're thinking about trying to weave into culture and be more inclusive. Really like light lifts, but things that we could all be more aware of and working harder on to make for caregivers and care receivers in our communities. 

Music transition

Shoshawna Rainwater (30:38)

So let's talk for a minute about how you might be able, listener, to support a family caregiver. If you're a person who's not in the role of primary caregiver–you're a bit more on the periphery perhaps, and looking for ways to support a family caregiver.  We'll come back to Dr. Blight's work now to talk about his framework, “Five ways you can support a family caregiver.” And they include Acknowledging, Affirming, Allowing, Asking, and Acting.  So he calls this “The Five A's.” 

So to Acknowledge is the first step. Family caregivers feel rarely acknowledged for the work they're doing. I hear this probably daily in my work from family caregivers or primary caregivers who feel that people not only do not understand what they are going through, but are not acknowledged for their efforts.

So when someone acknowledges them, it feels really significant and it's meaningful. And it can really help reduce that sense of invisibility that is hard for us to experience as a human being. It's hard to feel like people don't see you and your efforts. 

Rachel Coady (31:51)

Yeah.

Shoshawna Rainwater (31:52)

So one of the questions is how can you acknowledge the efforts of the caregiver? 

Next is to Affirm.  So affirming the importance of what they're bringing in terms of the care and the efforts they're making on behalf of the person living with brain changes. And so thinking about what specifically would you say to someone to affirm the caregiver's important role? 

Rachel, are there things that were not helpful or affirmations that you didn't find helpful that you want to add here? 

Rachel Coady (32:29)

I guess I would say the things that were most helpful were affirmations from people that acknowledged that I was holding a lot or doing a lot or carrying a lot and kind of more specifically about things that they saw me doing that they knew I was doing. The general comment of like, “this must be hard” or it's acknowledgement, but it didn't feel like they necessarily knew the experience. I think again, it's similar to other major things we go through in life that people are not going through them say things and you're like, “that's nice.” 

And then there was self-acknowledgement. And I would invite caregivers to explore this a little bit too, but I tried to end every day by reminding myself that I was doing my best, that “today I did my best.  And tomorrow I'll try again to do my best.”  And that's kind of all I could ask of myself, but it just felt like there was always pressure. I was probably putting on myself where I felt societally to like do or be more. And it just helped reset me to go, “you're doing your best at a really hard thing. And today you did your best again.” So I would offer those. 

Shoshawna Rainwater (33:43)

The third “A” is Allow. So family caregivers often feel like their emotions are bottled up and that they are not able to fully express how difficult this is. And so giving someone the space without judgment, so a non-judgmental, caring space to allow someone to share how they feel is a really nice way to offer relief.

Rachel Coady (34:11)

I want to say without judgment and without trying to fix it.

Shoshawna Rainwater (34:16)

Yeah.

Rachel Coady (34:17)

Just allow the caregiver to be heard and sit and witness their experience. That was one of the most powerful gifts people gave me. My sister was amazing at that. I could just call her and vent and freak out. And then she would just listen and kind of ask me, if I needed anything? what she could be for me?  Allowing is a huge deal in a society, again, that doesn't have an outlet or space or acknowledgement for this role. Being a person who will allow another person to tell you about it is one of the greatest gifts you can give a caregiver.

Shoshawna Rainwater (34:53)

So asking yourself what would be required to allow this caregiver a safe space to express feelings or take time for themselves. without the fix piece and to just be able to show up. My younger sister used to just allow and make space for all of my stuff, my emotions around the caregiving experience. And usually, the most soothing thing she said to me was, “I wish I was there with you.” 

Rachel Coady (35:22)

Mm. 

Shoshawna Rainwater (35:24)

She was in it with me emotionally. 

The fourth A is Ask. Asking specifically, “how can I help?”  So some caregivers hear that question and may feel like it's just a token gesture; but being able to really say sincerely, “I want to help. I'm interested in helping. I could use some direction about what might be helpful to you.” And asking honestly and without judgment, “how would you like me to help?”

And I would say for those people listening who are primary caregivers, people really need that level of direction. It's helpful to them to hear, “I could really use X or I could use Y or Z.”

Rachel Coady (36:08)

Yeah.

Shoshawna Rainwater (36:09)

And then the final A is to Act. So if you've asked the caregiver what you can do and they've answered the question, then please act by following through on that request. 

Rachel Coady (36:21)

Do it. It was hard for them to ask for help and to answer your questions. So please deliver if you can or help them figure out how to make that possible.

Shoshawna Rainwater (36:29)

Yeah, and if you don't act, it actually can have a negative impact– 

Rachel Coady (36:32)

For sure.

Shoshawna Rainwater (36:32)

–and can create a scenario where a caregiver feels reluctant to ask again. So life happens and things come up, but to the best of your ability, please act on any requests that's been made. And if you can't act, let them know why.  “It didn't work for me this time.” Don't just leave them hanging.

Rachel Coady (36:51)

Don't ghost. 

Shoshawna Rainwater (36:52)

So asking yourself, “how can I act to deliver the help requested by the caregiver?”

Rachel Coady (36:57)

And I want to just name, if there are people listening right now who don't have the family dynamics that you and I have described, or you don't feel a circle of support around you, this is again, like why we need more of those memory cafe moments or why we need community support groups more;  but try to see through your local chapter of the Alzheimer's Association or local resources, if you can find and connect with a community that is understanding or experiencing what you're going through, because within that you will be able to find the microculture of what we hope someday will be more of the mass culture of support. 

And I think for all of us listening who aren't maybe doing frontline care anymore, but we know people who are, or we've been touched by people in this journey, this is a call to all of us to keep pushing forward. And many of the people in my life have reached out to me since my mom passed away and said how much me sharing my experience helped open their eyes to what this journey is like or what it could be and they want to be better allies. All of us can become better advocates for this work. So if you're not in the big caregiving journey role right now, you can be the friend, you can be the colleague, you can be the neighbor who decides to start doing some of the things that we've talked about here–throw that shower, talk with local cafes about if they've ever thought about becoming a memory cafe location, suggest to employers that you might know to start looking at how they support caregivers and their staff. 

Raise your voice for caregivers who need the support. Because we know that people who are doing the caregiving already have a very heavy journey and load, and so part of what we can offer is doing proactive work to try to make the path ahead for them lighter. That can be a takeaway for all of us.

Shoshawna Rainwater (38:52)

I love it.

Rachel Coady (38:55)

Today we discussed the possibility of reimagining caregiving–of looking at ways our communities and culture at large could do better with this valuable role and life experience that happens for caregivers. We looked at ways we could make this journey better for ourselves, our loved ones, and the caregivers in our life who could use some extra support.

Shoshawna Rainwater  (39:15)

We're so grateful for your ongoing support listeners, and we'll be back in a few weeks to cover more topics about how to support people who are caring for a person with dementia. Until then, thank you for all that you are doing and thanks for listening.

Rachel Coady (39:35)

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  (39:49)

You’ll find us at our website hopefloatspodcast.com.  When you’re there, you can learn more about how to work individually with Rachel or Shoshawna for support with your specific circumstances or situation. That’s also where we’ll share more tools, resources, and libraries that can help people on this journey.

Rachel Coady  (40:08)

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