Support for the Spousal Caregiving Journey

In this episode, Shoshawna Rainwater and Rachel Coady discuss the unique challenges faced by spousal caregivers of individuals with dementia. They explore the emotional, psychological, and physical impacts of caregiving, the changes in intimacy and connection, and the feelings of isolation and stigma that caregivers often experience. The conversation emphasizes the importance of building a support network, understanding the legal and financial aspects of caregiving, and fostering empathy among friends and family. 

Takeaways

• Spousal caregiving is distinct from other caregiving roles.
• Emotional impacts can affect physical well-being.
• Long-term relationships complicate the caregiving experience.
• Intimacy changes can disrupt marital connections.
• Caregivers often experience feelings of isolation and loneliness.
• Social stigma can increase feelings of embarrassment for caregivers.
• Physical health impacts are significant for caregivers.
• Legal and financial planning is essential for caregivers.
• Building a support network is crucial for caregiver well-being.
• Empathy and understanding from friends and family are vital. 

Transcript

Shoshawna Rainwater (00:04)

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

Welcome back to Hope Floats. So glad to be here with you all after a very busy summer for both Rachel and myself. And we're so delighted to be back with you as we come into this new fall/ autumn season, at least here in the Northern hemisphere. Feels like change is on the move, Rachel.

Rachel Coady (00:46)

Yeah, definitely, definitely starting to become more sweater weather. And we also, we took a summer break, but we want to be sure and thank those of you that have donated to our podcast. We've been really grateful for the donations and those donations help us continue to produce this podcast, resource our site and create resources for you in our library there, which is the HopeFloatsPodcast.com. If you do want to donate, you can do so at our site or via Venmo. And we really appreciate that continued support to bring you this body of work. 

So what should we talk about today, Shoshawna?

Shoshawna Rainwater (01:22)

Today we're gonna talk about the unique landscape and challenges that come with caring for a spouse with dementia. And this is worth its own episode to really call out the unique features of this role and relationship. It's different to be a spousal caregiver than it is to be an adult child or the sibling of a person with dementia. 

Today's episode was actually a request from a listener who asked specifically for us to talk about this unique role of caring for a person that you are partnered with or in relationship with. So, this is for that person and for all of the other folks listening for whom this is applicable.

Rachel Coady (02:10)

Well, for starters, let's talk about why caregiving for a spouse or partner is so different than other caregiving roles–whether it was like being an adult child or a sibling or a friend or a neighbor? What makes spousal caregiving so different?

Shoshawna Rainwater (02:23)

Yeah, so the roll has really unique emotional, psychological, relational, physical, and social aspects that are not always present in all other relationships. And we're gonna walk through those different domains today. And we're gonna learn about how impact and deterioration in one of those areas can seep out and over into other areas. So, what I mean by that is when we experience emotional impacts of caring for a person with dementia, it can impact our physical well-being, as well. So these things don't happen in vacuums.

I think primarily the most unique facet of being a spousal caregiver is that at one time in one's life or initially in the relationship, this was a relationship not foisted upon you by a family birth order relationship, but rather by choice. I think that's fairly obvious, but what I mean by that is many of us–at least in North America–go into a relationship or marriage with some agency and some autonomy around that decision being made. That's not true for other roles when we care for a person with dementia, say as an adult child.

Rachel Coady (03:50)

Mm-hmm.

Shoshawna Rainwater (03:50)

We didn't get that option of choosing to be in relationship with that person. And it's also not true that we necessarily get to pick our siblings or cousins or other people that we might be related to. So this is,  it's a unique aspect of this caregiving role. We chose this person at one point in time in our lives. That's largely true.

Rachel Coady (04:11)

Yeah, yeah that makes sense. We take vows to that, we make promises in that choice. 

Shoshawna Rainwater (04:18)

That's a huge part of that. It is true that in this country, we do a very public-facing usually, vow taking in front of people where we say really important very intentional words around what it means to be partnered to this person, what our commitment to them is. I think vow keeping and vow taking definitely contribute to this unique aspect. And I have many times in my career heard people say, “I made the vow to stay with this person for better or for worse, through sickness and in health.”

Spouses are also the primary caregiver most likely to be living with or cohabitating with the person living with brain changes versus adult children who often do end up or are in situations where they're cohabitating with a parent with dementia. But usually the caregiver role that is most commonly cohabitating is the spouse.  And this closeness and this proximity of being in the same physical space creates unique stressors, including a bit of a 24-7 exposure to, or unrelentless exposure to some of the dementia features that their person is experiencing.

Rachel Coady (05:46)

Yeah and I also feel like spending close time with a person and being partners over sometimes decades of life, it can also make it hard to see the changes or the disease that's happening when you're with them that much. So i t's like, they're really the frontline person, but they're also like the person who's in it so much sometimes I feel like it could be challenging to see or want to admit or address it.

Shoshawna Rainwater (06:11)

Yeah, that's related to the other unique feature, which is that spousal caregivers are more likely to be caregiving for a person with dementia in the early unfolding stages, sort of pre-diagnosis. And I agree with you, Rachel. There's something about the cohabitating experience where a lot of what we're seeing in our spouse may get dismissed initially as like, “huh, that's weird” or, “they've never paid attention when I'm talking and now they really don't seem to be paying attention.” 

Rachel Coady (06:45)

Hmm. 

Shoshawna Rainwater (06:45)

It's not always really clear what is on our plates, as a spousal caregiver. Over time, usually there is no doubt. You've heard me say that in past episodes. But in the beginning, it creates a lot of ambiguity and I think a lot of distress for people because they're not sure what's going on. And I think a lot of those symptoms can be overlooked.

Spousal caregivers are the caregivers that are most likely to be caring for a spouse in the early to mid stages of the disease and adult children are often the ones assuming responsibilities and primary duties in the middle or moderate to severe stages simply because many caregivers, spousal caregivers, are of older adulthood age and have either developed their own health issues with age or have died before their spouse with dementia, which happens about 50% of the time. 

Rachel Coady (07:47)

Wow.

Shoshawna Rainwater (07:47)

And so oftentimes adult children who find themselves having to step into the role have been maybe watching from the sidelines in the earlier parts of the disease, watching their parents work really hard, even if it doesn't always feel that way. Their parents have been working really hard to maintain and then something tips the scales by moderate/mid-stage and a lot of adult children are having to step in at that point in time. 

But you're making a good point when we talk about this relational impact of vow keeping, what does it mean to be committed to a person through thick and thin. And the role gets shifted in spousal caregiving from one of intimate partner to one of primary caregiver. And those are two very different roles. There's a shared life history, depending on the length of the marriage, but in many cases, this is decades of going through adulthood, going through life together and having that shared experience which creates a shared history.

And there's also a lot of attention, I think, in marriages around the idea of a shared future and this concept of what, I don't know if we use this term much anymore, but I've heard lots of previous generations refer to older adulthood as “the golden years.” So I think in society, there's a lot of messaging around, “well, we'll slog through, we'll raise kids, we'll plow through jobs that are really, really hard, but boy, can we look forward to the golden years.” A nd when dementia has set in that fundamentally changes what those golden years look like for both parties.

Rachel Coady (09:31)

The other thing I'm thinking about as you, you know, if you're a couple that's been married, partnered for years, there's just a nature of being in partnership with someone where you finish their sentences and you can pick up where they left off and they can do that for you. And I imagine that it's kind of harder to see and believe cognitive changes when you have so many rituals…

Shoshawna Rainwater (09:57)

Mmm.

Rachel Coady (09:57)

… and things established that you might not notice that your person you know, maybe isn't able to finish the sentence, but you can do it for them. So it doesn't matter.  So I think that's another thing is like, when you just have this much rhythm with a person and their abilities or behaviors change, I guess in some ways you might really notice it because you're so used to them being who they are. But in another way, I'm sure it's hard to see some of the changes because you're just so established in your kind of rote  routines and what you do every day that you're like, “Oh, that's not a big deal.” So I can imagine that's in that relationship that would be tough sometimes to maybe identify or believe.

Shoshawna Rainwater (10:33)

Agreed. I think a lot of times people are seeing changes in the person with dementia before the spouse is either able, I don't want to say willing, but definitely there's something often getting in the way of them being able to see it the way other people see it. And I think a lot of that is that 24/7 exposure and the long history of relationship of those things like understanding each other's silences…

Rachel Coady (11:01)

Yeah.

Shoshawna Rainwater (11:02)

… and finishing each other's sentences. There's all those unique nuances for a person you've been in relationship with, romantically or intimately for years. 

We'd be remiss if we don't also mention that the erosion of a marital identity as a partnership can include, always includes some degree of physical intimacy.

Rachel Coady (11:26)

Yeah.

Shoshawna Rainwater (11:27)

Whether that's sexual intimacy or not, there's a connection there for many couples that gets disrupted by the dementia experience. And in some cases, the sexual relationship piece gets disrupted because caregivers are finding themselves in a position of beginning to view their person with dementia as less as an equal partner than they are a person who needs something from them. 

And then there are real changes that can come to the brains of people experiencing dementia when it comes to either initiating sexual relationships, there are some dementias that create a hypersexual need in people whose brains are changing. And that can be very disconcerting for spousal caregivers, that there's a change in the levels of desire.  And then that can happen in the opposite direction, as well, for a partner experiencing dementia then may also become less interested or has increased apathy around those kinds of experiences. Both things can be very common.

I had a client share with me recently something that I thought was profound, which she was describing her relationship with her partner and said, “I feel simultaneously married, widowed, and weirdly single.”

Rachel Coady (12:48)

Wow.

Shoshawna Rainwater (12:50)

“I feel all of those things in this partnership now, a relationship with this person with dementia.” That was a really insightful comment.  And I think dementia can function as a litmus test for partnership stability. There's a paradoxical effect, kind of an irony that can set in where  historical closeness, and connection between a couple, and now one person has dementia, can often equate to increased suffering for the spouse in the relationship who does not have dementia. 

And one of the key questions that I ask when I'm working with spousal caregivers, is “how would you describe the quality of your relationship prior to the onset of these symptoms or the onset of dementia?” And if the relationship has been one of, significant partnership and where someone describes the person as their best friend, it really underscores, I think, a significant loss that perhaps people who don't have that strong connection may not feel the loss as acutely. Of course they feel loss, but they may not feel it quite as acutely.

Rachel Coady (14:00)

Hmm.  I really appreciate all the insight you're sharing about this particular journey. And one of the things that I think about is what is still here? And I think about this all the time for people on their dementia journeys, because we know that disease progresses differently and at different paces. But thinking about people who are in meaningful, sometimes lifelong partnership, it feels like there are still things available to reconnect in that relational sense, even as the disease progresses. 

So I think of things that access core memories and experiences for our love and with dementia and even things as simple as like listening to songs that you both enjoyed, music that's familiar or was a part of your life, poems that you might both know or share, physical things like hand holding, soothing touches can be a really nice thing to share.  And then reviewing memories that are of a time where your loved ones still can recall, normally those are kind of core memories or past memories. It can be a really good way to meet your person where they are now every day and still share some of that relational and marital connection that you've had for so long. And hopefully provide some breaks from feeling like the caretaker for this person back to being the partner to this person, as is possible.

Music transition

Rachel Coady (15:43)

What are some common emotions for spousal caregivers in this? You're describing experiences for sure that are happening, but what are some of the kind of emotional aspects that come up for these spousal caregivers?

Shoshawna Rainwater (15:57)

I think the emotions that I bear witness to most often are usually around what we call the “negative” emotions. I use that term in quotes. Negative emotions like guilt for feeling the way they feel. Sadness, deep, profound sadness. Dread about what's coming or worry about what lies ahead in the disease landscape. Isolation, a lot of feelings of loneliness, of profound loneliness I hear often. And also anger; how reasonable that people might feel anger… 

Rachel Coady (16:37)

Yeah.

Shoshawna Rainwater (16:37)

…that things are not unfolding in the way they had hoped for. So all of those, when we say negative emotions, it is not to say those are not normal or okay to have. All of those emotions are okay to have and they're really common.

Rachel Coady (16:54)

I just want to talk for a second about isolation also, because I think one of the things that's unique about a partnership that has this disease in it is that you are oftentimes friends with and connected to people that you've known together for a very long time. And I've known experiences where one partner gets dementia and the other partner you know is kind of trying to care give and go on that journey with them and these other aspects of their life start to kind of pull apart; I'm sure that makes you feel lonely because it's just nothing's really changed for you personally, but in your partnership, things are definitely starting to change. And that could feel really lonely, I think, because everything else about your rituals maybe looks like it's still the same.

Shoshawna Rainwater (17:40)

Yeah, yeah, and it reminds me, Rachel, of the episode we did on ambiguous loss where let's remember there's a significant difference between feeling lonely and being alone… 

Rachel Coady (17:56)

Mm-hmm, mm-hmm.

Shoshawna Rainwater (17:57)

… and feeling lonely and yet being in the presence of this person that you've been in partnership with. That is its own unique kind of grief is “I am here with a person who is physically present with me and yet psychologically, cognitively, emotionally, seemingly absent from me.” And I think it creates a really difficult experience for caregivers. 

I also hear a lot of when people are given permission to express feelings of resentment, resentment is almost always present…

Rachel Coady (18:31)

Hmm.

Shoshawna Rainwater (18:32)

…and it's not necessarily, although sometimes it is, it's not always directed at or towards the person that they're caring for, but just resentment for the general experience. You know, ”I don't want to be here doing this. This is not what I had in mind.”

Rachel Coady (18:50)

Yeah.

Shoshawna Rainwater (18:51)

And how reasonable and understandable that a person would feel that way. It's okay and quite normal in my experience to have these feelings, right? 

Rachel Coady (18:59)

Yeah, healthy in fact. 

Shoshawna Rainwater (19:00)

Yeah, there you go. It's actually healthy, Yeah. And then I think this guilt is also related to feelings that come with, I think, kind of bleed over into the social stigma area of the impact of this disease, which is, we have high expectations in this country for how adults are supposed to act when they go out in public. And we want our person to exhibit willpower and good skills and to be friendly. And when dementia has set in and some of those skills are changing, it can be very embarrassing for a lot of caregivers because of the societal stigma and that just increases the isolation and loneliness.

Rachel Coady (19:46)

I want to talk some more about the social impact and social experience of it. But I do think it's a good time to point out that, when you begin the spousal caregiving journey, I think one of the most important things to realize is that even though the other parts of your world that you can't participate in, there are many, many people who are experiencing the challenges of spousal caregiving. And one of the recommendations we have is to really look into local chapters of the Alzheimer's Association or local support groups or church support groups. There's some online communities like Alls Connected, which we'll put a resource to on our site, where you can find more people that are very much experiencing what you're experiencing right now and can understand some of these differences and this challenging journey that you're on. 

So maybe the world around you as you know it doesn't seem to be experiencing what you're experiencing, but there are a lot of people that are going through what you're going through and thank goodness there are more and more resources where we can find each other and really be there for each other.  But let's keep expanding on the social impact of what this can look like when we're on the journey of being spousal caregivers.

Shoshawna Rainwater (20:57)

Yeah, I think caregivers sort of normally and naturally then when outings are not going very well, they come to the conclusion that it's just not worth the effort. It's not worth the judgment. It's not worth the time and energy it can take to go out into the world. 

Rachel Coady (21:17)

Mm-hmm.

Shoshawna Rainwater (21:18)

And that again creates such a profound sense of isolation and loneliness. I like this idea of naming because I think it helps reduce the stigma. Once we are honest about how many of us are in relationship with or know a person experiencing dementia, guarantee people are not alone. 

Rachel Coady (21:45)

Mm-hmm.

Shoshawna Rainwater (21:45)

And being able to sort of proactively tell people, say a group of friends, right, that the person that you're in partnership with is experiencing cognitive decline, they're experiencing dementia. “  You may hear them or see them do or say things that you know they would never have done before. And I hope and wish that you can just hold that with me. And meet us with some grace.” 

Rachel Coady (22:12)

Yeah.

Shoshawna Rainwater (22:14)

So you can tell people, you can give them that heads up ahead of time, or you can sideline that conversation quietly. You don't wanna announce that probably in front of your person experiencing brain changes; that may be embarrassing to the person. But I think there are ways to let people know things are changing, and you may see this person showing up in ways that they wouldn't have before. And it's really important to us to still be connected with other human beings.

Rachel Coady (22:42)

Yeah, I think that's almost the ask, right? And I think this is a really, I like this point you're making, which is a couple things happen here. One is to let your peers and the community around you know that you know… 

Shoshawna Rainwater (22:54)

Yeah.

Rachel Coady (22:55)

Because I think a lot of the times in our elder circles, this disease is a great fear for a lot of people. And sometimes people will start noticing things, but like they don't want to say anything, or they think you don't know, and if they tell you, you might get mad and defensive about your partner. That's all true. Those are all real experiences. But I think when you go, “hey, I know that my spouse is experiencing this. And what I'm asking is that we get to continue to be a part of these circles. It's good for them. It's really good for me. These are the ways that we can successfully kind of help support my loved one through this. These are the ways that help us communicate.”  We even went so far in some of our situations of like prescribing, “this is how we want you to talk around them.”  

Shoshawna Rainwater (23:35)

Mm-hmm.

Rachel Coady (23:36)

You know, if they say something, just kind of go with it, whatever it is; but that really allows you as the caregiver to continue to have some normalcy and support. I think it's another group that, hopefully you're in some of these scenarios where you can keep asking for the things that you need as the journey progresses. To your point, it really takes out the stigma and some of the shame and the isolation that we otherwise feel. When we just start to retract more and more out of social settings, kind of out of protection for our loved one’s changing brain.

Shoshawna Rainwater (24:07)

Yeah, and I think the experience of the caregiver is that there can feel like real judgment out there. 

Rachel Coady (24:12)

Yeah.

Shoshawna Rainwater (24:13)

When people are not showing up with full neuro-typical willpower and agency and good decision making and all the right social skills; that makes people uncomfortable. And it's asking those of us who are lucky enough to still be in well brains to show a little bit of grace here. So I think there's a role for everybody in this.

Rachel Coady (24:41)

There may be places in your community where it's less and less optimal to go out and spend time, but I think the spousal caregiver can look at some of the rituals that they've had going for a long time in the communities they've shared those with–whether it's going to church service like you normally do, or maybe you every week go for coffee with the same group of friends on, you know, some morning or book or supper clubs; those are groups that have maybe built relationships with that you've known for a while and I would hope would be really receptive to you saying, “hey, I know that things are changing for my loved one, but we would really like to continue to do this. It means a lot to us. Here's, you know, what we see and here's some changes that might help this be more successful for my person.”  But I just think keeping within the communities that are nurturing and caring for you, being able to maintain those events as much as you can for the caregiver as well as the person with dementia is really important.

Shoshawna Rainwater (25:42)

Yeah. Maybe before we leave this particular part and move on to the physical impact of dementia caregiving, I want to name, watching Emma Hemming-Willis, Bruce Willis' wife, recently talk about her experience. The amount of judgment, I think, that has come towards her, I just can only imagine feels really unhelpful in such a difficult disease landscape. And I want to name, in a disease landscape that has a lot of burdens, judgment by others is a significant burden. 

Rachel Coady (26:17)

Mm-hmm.

Shoshawna Rainwater (26:18)

And I also think a majority of people in this role are women and women need each other in this space. And when we judge each other and hold each other in judgment, it really harms all of us.

Rachel Coady (26:30)

Mm-hmm.  That's a great point. Maybe the one other thing I'd say is like, this is a disease in an organ on our body that we know very, very little about in the grand scheme. And so the idea that someone would do it better or they have a better way or that you're doing something wrong to me is like, sorry, but like, no, throw out the window because it's not fair to cast that on any- I don't like the sense of judgment over other people in it pretty much anyway, but in this disease journey, nothing gets better by adding your own judgment about it or putting yourself in situations where you're going to receive judgment about it. 

Shoshawna Rainwater (27:09)

Yeah.

Rachel Coady (27:10)

And I think it comes back to that word you said, “grace”, that's the very least we can give each other in this. And it's so important to just know all people involved are doing their best; your job as a support person to a spousal caregiver dementia is to do your best. 

Shoshawna Rainwater (27:26)

Well said. 

Music transition

Shoshawna Rainwater (27:38)

This leads us into the physical impact of being a caregiver is really no joke. We've referenced it in small doses in prior episodes, but, all of those feelings that get stirred up in us as human beings when we feel judged and we feel isolated, those have a real physical impact on us. And they can lead to real significant health concerns like increased fatigue and exhaustion and lowered immunity, which make staying well and healthy more challenging. And for spousal caregivers, in particular, this unrelenting 24-7 experience doesn't give them a whole lot of space to be able to go and do a yoga class or a meditation course or things like that. 

We know this, like all of the things that are happening to our body overlap with other parts of our body, right? So what happens to us emotionally affects us physically, what happens to us physically affects us emotionally, all of that.  But there are real health consequences for being a caregiver of a person with dementia and spousal caregivers because they are typically older adults, not in every case, certainly not in many cases of the younger dementias; but for people who are experiencing dementias that's set in and say their 70s and 80s, oftentimes they're partnered with people of a similar age. Not always, sometimes there are in a second marriage or a late marriage in life, the spouse may be significantly younger. But usually, many people who are in a spousal caregiving role are older adults themselves and we know that the chances of developing a health issue as we grow older just grows, too. 

Rachel Coady (29:30)

Yeah.

Shoshawna Rainwater (29:31)

So making sure that people have the ability to live their lives with manageable amounts of stress–I'm not saying no stress. I'm not even insinuating that people could live and do this role with very little stress–but manageable levels of stress it's key so that they can stay as healthy and well as possible.

And whether it's because of their own, what we call “co-morbidities,” or their own health issues in spouses caring for a person with dementia, that statistic we talked about earlier in the episode, around 50% of people don't outlive their spouse with dementia, they will die before them. I've seen this happen over and over, creates a scenario where then adult children are scrambling, cousins are scrambling, siblings are scrambling, people are trying to figure out then who steps into this role.

A lot of people are interested in this question about does caring for a person with dementia increase one's risk factor for developing their own cognitive decline? And I would say I've sat in talks where the answer is “yes,” and I've sat in talks where the answer is “we don't know that.” And I've sat in talks where they're like, “maybe, but only by a little bit.” I just listened to a talk called “The Health Implications of Dementia Caregiving” by a team of folks. And they said that there is a risk factor to being a caregiver for a person with dementia of developing your own dementia experience, but it's less than 5%. 

So, I think we don't know exactly what that is, but I know it's a question that's on a lot of people's minds and it's starting to make headlines. And I think that actually might be something that people will care about and start paying attention to because I sometimes hear caregivers say, “well, if I get really sick from this role and I die of a sudden heart attack, so be it. I'll go down with a ship.” And that's tragic in my mind, that's not what I would want for that person, but I think if people begin to understand that there could be real cognitive impacts on their own brains because of this role, I think people may actually start paying more attention to the stress levels.

Rachel Coady (31:48)

Yeah. And I think the truth is like stress is a contributor to every major disease that we know. There's no question, whether it's dementia, heart disease, cancers, stress is connected to increased risk for all of those. And so I think it's really important, kind of regardless of if it means you're going to get it or not, stress is not a good thing. And so to the extent that you can, to your point, which, you know, there's going to be some stress in this journey we have to do more work to bring in support, bring in some relief, take some breaks for ourselves so that we can continue to live, so that we can continue to be the caretakers we need to be. Whether we're talking about disease or well-being, period, we just have to do more to kind of help relieve ourselves. 

And so I think it becomes really important that we, as early as possible, start to consider who we can bring in to go on this journey with us–whether its family or volunteers or respite services to help us. I have found or I've known multiple scenarios where a spousal caregiver doesn't want the help because they think they took a vow that said they should be able to do it on their own. They don't want other people in their houses, which I respect and understand. They don't want to introduce new people to the disease and their experience. But I think that it is time for us to kind of remove this veil that says, “you're not doing it right if you need help.”

Shoshawna Rainwater (33:18)

Mm-hmm.

Rachel Coady (33:19)

And instead say, actually, “you now get to get help. You get to have support in this.” There's no reason to feel guilty about needing that. Everybody does. And the truth is that caring for yourself is caring for your spouse.

Shoshawna Rainwater (33:36)

Mm-hmm.

Rachel Coady (33:37)

And doing things that help you be the partner, the person, the caregiver you want to be include drawing some lines and getting some help and reclaiming some things that make you feel safe and okay. So we have to start thinking about the small and significant things that are available in this journey. That can look like making sure there's some healthy snacks for you around the house versus lots of sweet treats; that can look like some daily walks with deep breaths for yourself; that could look like meditation or prayer, if you do it. Stretching, yoga, things that are right there in the home. 

Movement machines, you know, if we can't leave the house to go for walks, then can we find a used bike on Facebook Marketplace that helps us stay in home and exercise around our loved one? Are there calming music playlists that we can play in the background? Can we do things that soothe yourself? Have a ritual every day. And we covered some of this in our self-care for caregivers episode so I'd encourage you to listen to that. But really thinking about the physical things that you can do to support yourself as the spousal caregiver feels like it's an absolute necessity.

Shoshawna Rainwater (34:52)

I couldn't agree more. And I think the role of caregiver to a person with dementia is just simply not a one person job. It may feel that way in the very beginning. It may feel somewhat manageable in the very beginning, but very quickly, the disease outstrips the resources and abilities, frankly, of a single person. The disease gets too big for a single person in almost every case I've ever seen.

Rachel Coady (35:18)

I'm in a committed dating relationship. And one of the things that I think about with my partner is that I want to proactively talk about this potential. Like “if this were to happen, if this disease happened for me, I would want you to get help. I would want you to welcome those services.” And I don't want to plan on having a cognitive decline as I get older, but when you're the child of a person with dementia, you start to think about, “if this is my journey, what would I want?” And I think planting the seed early with your partner of like, “hey, I know what this can look like. And if we have to go down this journey, I really want you to feel like you have these options and this is the  right thing.” 

So I just want to add that like once you've experienced this disease, it's okay to set expectations with people in your life around what you would want should you experience this.

Shoshawna Rainwater (36:17)

I love that. And you know what it makes me think of, Rachel, is that it's also an opportunity, because we're learning more and more about the disease experience, you and I probably have a better than average understanding of dementia because of the work that we do and our passion for the work. But one of the really expectable things that I think is an important part of this conversation is to say, “I'm telling you this now as a person with full cognitive capacity, coming from a place of the personhood that I hope you will remember and listen to when, it will be a very real scenario for me to say as a person with cognitive decline, A. ‘I didn't say that,’ or B, ‘I don't want anybody in this house.’ And I want you to remember these words right now,  today, which is…

Rachel Coady (37:05)

Yeah, “yes I do.”

Shoshawna Rainwater (37:06)

… please do reply in all the ways that will be soothing to me and do it anyway. Do it anyway. Do it anyway.” 

Rachel Coady (37:14)

Yeah, do what you need to do.

Shoshawna Rainwater (37:16)

And being able to sort of proactively name, “here's what you can expect from me as a future person experiencing brain changes.” And that way, let's get people off the hook.

Rachel Coady (37:25)

Yes.

Shoshawna Rainwater (37:25)

In fact, maybe you say like, “if you don't do that, this version of me is going to be really miffed at you for not taking care of yourself.”

Rachel Coady (37:33)

Yeah, to me, it's the same kind of planning and forecasting that we do in other aspects of co-habitation or relationships, is like, “let's just talk openly about what we'd want for the other person in these kinds of scenarios, too.”   And if you're currently a spousal caregiver, it's likely too late to have some of those conversations. But, I do think it's an invitation to think back at that spouse to when that person had their full cognitive ability, what would they have wanted for you, and follow that versus maybe the way the disease is changing their behavior, their mindset now. 

Shoshawna Rainwater (38:06)

Mm-hmm. Yeah, and it's not that people with dementia can't have and share their perspective on things, but likely, “as a person living with dementia, I will have more limited insight than I have today. And so please listen to this version of me and do what you need to do to get through the experience.” 

Music transition

Rachel Coady (38:35)

What are some other things that spousal caregivers are needing to think about around life navigation, the financial, legal aspects of partnership?

Shoshawna Rainwater (38:44)

We've talked about emotional, social, physical, relational. The last one that I think of is really this what I would call kind of life navigation, adulting in America domain, which is the complex financial and legal landscape that we live in, whether we realize it or not. 

Rachel Coady (39:02)

Mm-hmm.

Shoshawna Rainwater (39:02)

We are citizens of a country with a lot of rules. We're gonna actually do an episode this year before 2025 is over on the more legal and financial aspects of the caregiving role. But what I see happen is spouses become in charge of all aspects of a couple's financial adulthood–meaning finances, estate planning, the health system navigation, medical decision making, all of it–because the person experiencing dementia, by the time they've left early stage and are in middle stage, have likely lost not necessarily all abilities, but many abilities to safely manage those pieces of their life and likely should not be in charge of any of those facets. 

And not only then does that, having them not be in that role then helps protect you as a couple from real, true financial exploitation, but it also means that the spouse without dementia, is in charge of all of these pieces.  So in addition to the 24-7 caregiving role, they're also having to do all of this. And I hope for people, I see that this could be an area where they could get some support if there are other involved family members or a brother-in-law who's really good at managing finances or a sister-in-law who's really good at managing finances. But getting some support in some of those areas can help relieve some of the burden that people are in in this role. 

And then remembering that dementia because it is progressive in nature–meaning it grows and changes over time–that there will be new planning, new decisions to be made. It is a constant experience of like, “gosh, what next? What's coming?” And staying on top of all that from a legal and a state planning and medical decision making perspective is a lot of work. And that can feel very burdensome for caregivers.

Rachel Coady (41:08)

You mentioned at the beginning of this, too, that normally the primary caregiver in the beginning stages of the disease–if the person is married–is spousal and then as the disease progresses and the work becomes too much for any one person to handle, a lot of times the adult children will become, you know, involved in more caregiving. It feels like in this area, it's not only smart for the spousal caregiver to have things in place, but maybe to pull in someone who might take on kind of a bigger role down the road in this disease progression, bring them in early and have more things in place to be able to kind of successfully navigate this journey without having to redo everything once, say someone gets to mid-stage or something. 

So everyone will be on the same page. Everyone's aligned. Your kids are clear if they're your person or your brother-in-law or whoever's clear if they're that person. But just to pull in some support early in this part so that you don't feel like you have to deal with all of this plus  the daily responsibilities of being a spousal caregiver.

Shoshawna Rainwater (42:08)

Yeah, I read an article, the name of the author is escaping me at the moment, but talking about assigning a proxy healthcare decision maker. So this was about advanced directives and healthcare advanced directives. And talking about, it is not enough, in many or most cases, to just assign a spouse because the odds of a spouse being able to live long enough into the role or to stay cognitively intact enough to be the sole person in that role is kind of iffy. And so whenever possible, I fully recognize not everyone has at their disposal like the perfect adult child who could step into that role seamlessly as the alternate proxy…

Rachel Coady (42:55 )

Or family member for that. Yeah.

Shoshawna Rainwater (42:56)

Yeah, Or family member. But for those of you who do, I think that's sound advice, Rachel, to have somebody else teed up to be able to seamlessly, as seamlessly as possible in this society, right, where there are a lot of rules and a lot of tape in order to navigate systems, but having the ability to have someone teed up to step in if the spouse is not able to do it. I can't underscore enough how important that piece is because it's a pretty familiar scenario that we see.

Rachel Coady (43:26)

You know we've talked a lot in this podcast about designing your team and finding your team. And I think this is one of those areas where it's good to find a person, and basically say like, “can you be on my team for this? Like, can you help me with these parts?” 

Let's talk for a second about what it is to be friends with a spousal caregiver. Because I feel like it is really important for people in that role to understand how they can do better and how can we relieve some of the labor of the spousal caregiver in asking for what they need. 

Shoshawna Rainwater (43:58)

I am fortunate enough to facilitate a monthly support group at a local living community, mostly of spouses caring for people with dementia. And I cast out a question to them at our last meeting. Maybe this was leading the witness a little bit, but I said, “is it ever helpful when people tell you to take care of yourself?” And across the board, the resounding answer was “no.” 

Rachel Coady (44:22)

No!

Shoshawna Rainwater (44:23)

No, because we hear it all the time. We know that! And to tell me that becomes another burden for me to bear. What would be far more helpful would be to say, “ boy, I'm learning about dementia. I'm really learning just how incredibly complex the role is to care for a person with brain changes. And I want you to know I'm here to be a thought partner with you or to walk alongside you and thinking about ways to help you take care of yourself or do the things you need to do to help yourself stay as well as possible.”  I think that would be a better way to go about it. 

Rachel Coady (45:02)

Yeah, you need to take care of yourself.

Shoshawna Rainwater (45:05)

I think just across the board, we could probably just eliminate the phrase, “take care of yourself,” because everybody's heard it by now. I mean, since probably the mid-80s, we've been saying it. It's not helping people. Operationalize a plan.

Rachel Coady (45:18)

Agree. And I think also from the outside, if you don't have exposure to this disease, which at this point, there's very few people that don't have exposure to this disease, but if you don't, it's hard to know exactly what you're saying when you say that. So I think it comes with good intention, but we don't have a way to understand this disease journey first-person exactly yet. 

Shoshawna Rainwater (45:41)

Yeah, so this came into my mind as I was preparing for this episode. There's something really cool out there called a “dementia simulation exercise.” If you look it up, there's like organizations and sometimes health systems who sponsor a dementia simulation exercise, which is basically what it sounds like. You put on things that help simulate the experience of living with brain changes. 

So there are headphones you put on that have muffled noises, sort of episodically random voices that you can't really make sense of. You put on these gloves that really change the tactile experience because neuropathy and changes in tactile touch, that sense change in many older adults.   And then you put on some glasses that are designed to replicate what it's like to be a person living with dementia, which changes in most cases, our visual field. And then they put you in a room and give you tasks to try to perform. 

And I had an opportunity to do this when I was still working as part of a large health system. It was a really cool experience. We went in as a team. There were like four of us who signed up for this particular slot. So four of us got all gloved and head phoned and all that up, went into this room. I don't remember exactly how long we stayed in there, but long enough to be like, “Oh my God.” Every person emerged from that experience back into the lobby saying, “I don't know how they do it.” 

Rachel Coady (47:15)

Mm-hmm.

Shoshawna Rainwater (47:16)

It was incredibly informative in such a rapid fire experience. It unfolded, it developed an understanding that I didn't have in such a short amount of time. So what I was thinking about is, “gosh, wouldn't it be so great if we could replicate the dementia caregiving experience to build and enhance understanding of what caregivers are going through?” Now, it's a fundamentally different kind of exercise, it would have to unfold over probably days at a minimum, right? 

Rachel Coady (47:50)

Yeah.

Shoshawna Rainwater (47:50)

..because it's the cumulative effects. I don't even know if you could replicate it because so much of it has to do with relationship and the changes that happen in the relationship.

Rachel Coady (48:01)

Yeah, but it would help create a world that had more empathy towards this experience…

Shoshawna Rainwater (48:06)

Yes.

Rachel Coady (48:06)

…and what they're going through and hopefully help us know that this is why we need to move from, “hey, you need to take better care of yourself” to “what part of this work can I help you do? You know, what can I take off your plate this week?” 

Shoshawna Rainwater (48:20)

Yeah.

Rachel Coady (48:21)

“Could we brainstorm and look at options together and see if I could help in other ways or help you find more support for your loved one so you get a break?” Those are the kinds of helpful questions and they will change the journey and the well-being for the spousal caregiver to have those kinds of offers versus just another item on your list which is, “oh yeah, take better care of myself.” 

Shoshawna Rainwater (48:44)

And we've talked about support groups before, but being in a space where your experience is centered and understood and known by other people going through it is really like no other kind of experience.

Rachel Coady (48:56)

And I think it's fantastic if you can meet with a group in person, because there's a really special energy shared in being around one another, but they do have great support networks online for people who aren't able to leave their home. And, and so know that that's available, too. And that could be something that you can probably find through a Google search or through the Alzheimer's Association. So reach out and look for those as well.

Today we talked about the unique journey of spousal caregiving in dementia and the different ways this disease and caretaking for it can be very challenging on partnerships. We talked about some tools and options to consider to hopefully make that journey more successful, including looking for and asking for support as a caregiver, as well as encouraging friends and relatives of spousal caregivers to consider new ways that they could be a part of your team.

Shoshawna Rainwater (49:50)

So next time, we're gonna unpack the unique challenges and role of being an adult child of a person living with brain changes. And we'll highlight some of the unique facets of that. So we're looking forward to connecting with you folks in a couple of weeks. As always, thank you for your time, your energy, and for all you're doing. We'll see you next time.

Rachel Coady (50:21)

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  (50:37)

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  (50:55)

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