Caring For a Parent With Dementia

In this episode of Hope Floats, Shoshawna Rainwater and Rachel Coady discuss the unique challenges faced by adult children caring for parents with dementia. They explore the emotional landscape of caregiving, the impact on family dynamics, and the importance of self-care. The conversation also highlights coping strategies for managing caregiving from a distance and finding hope and connection in the journey.

Takeaways:

• Being an adult child caregiver involves a role reversal with parents.
• The emotional journey includes feelings of denial, grief, and anger.
• Family dynamics can change significantly when caring for a parent with dementia.
• Education about dementia can help caregivers prepare for the journey ahead.
• Caring from a distance presents unique challenges and requires proactive planning.
• Self-care is essential for caregivers to maintain their well-being.
• Finding community support can alleviate feelings of isolation.
• Establishing clear communication with siblings is crucial for effective caregiving.
• Accepting that the relationship with a parent will change is important.
• Moments of joy and connection can still be found in the caregiving experience.

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, a licensed 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 (00:26)

Today, Rachel and I offer some of our most helpful guidance for you as an adult child of a person living with dementia. As two people who've cared for and are caring for a parent with dementia, we wanted to bring our perspective today of our lived experience and also our professional lenses.

Rachel Coady (00:44)

Shoshawna, it's good to be here today. I'm excited for this episode.

Shoshawna Rainwater (00:48)

Same, hi Rachel.

Rachel Coady (00:50)

This is a unique perspective compared to other aspects of the caregiving experience that we've discussed. But let's just start by talking about what are some things to know that are kind of unique to adult caregivers for a parent with dementia, from your perspective?

Shoshawna Rainwater (01:08)

Yeah, you know, in our last episode, we talked about being the spouse of a person living with dementia and the unique circumstances that come with that role. And it's true that being an adult child of a person living with dementia is also fundamentally unique. And I think one of the most unique features is that it involves a sense of role reversal that likely hasn't been present in the prior relationship. So what I mean by that is as children growing up and being raised by an adult, in the majority of cases, the care is flowing kind of unidirectionally from parent to child. And that changes as we grow into a relationship with a parent who is experiencing dementia. Care can certainly still be exchanged between adult child and parent, but there's an asymmetry and a kind of a unidirectional flow of care that inevitably has to happen as the parent's brain and abilities are changing.

And for a lot of adult children, I think it's pretty shocking for them to realize, “my goodness, I'm in a role now where I'm providing significant amounts of care to the person who raised me, who I received care from.”  And so of course, in human relationships, there's a lot of reciprocity throughout the relationship. And I'm not saying that when we're children, we're never giving back to our parents. Of course, there's reciprocity. But in terms of managing aspects of another person's life, it is really required of us as we grow into these roles as adult children caring for a person living with brain changes. They need someone to be in that role. And oftentimes it's the adult child who has to fill that.

Rachel Coady (03:05)

Yeah. And I, I feel like the changes that happen, at least in my experience, were gradual. And so it's, it was hard to know, like, “is this happening? Am I the caregiver now?” Like, is she just having a forgetful moment?

Shoshawna Rainwater (03:20)

Right.

Rachel Coady (03:06)

It was hard, hard to know, as the journey progressed, when I needed to step up and when I had to kind of grow into that more caretaking role versus seeing her ability to still be my mom, to still talk with me about things, to still mother me, because some of that was still there, like you're saying. So It's not a clear line.

Shoshawna Rainwater (03:41)

Right, because that's almost always the case in dementia is that it's never sort of an acute onset. We've talked about that in past episodes where dementia tends to have a gradual growth. Its trajectory moves relatively slowly. And so there are lots of experiences early on

as someone is going through the earlier stages of, they very much do still have skills to show up for us in the ways they did historically as our parent. And that changes over time. 

 And I think that probably the most important thing I want adult children to know is that having a parent with dementia will change your relationship with your parent. Not always in difficult or awful ways, although that can feel true,  too, but know and expect that your relationship with your parent will undergo significant changes and that dementia creates a fundamental shift in the quality and the type of relationship we've been able to maintain with our parents historically. 

Rachel Coady (04:45)

What are some of the common experiences that can come up as you're on this journey of caregiving?

Shoshawna Rainwater (04:52 )

Let's hear about your emotions and what you experienced and then I'll kind of fill in around the edges.  And I can share my own too because I've certainly had them, as well.  But what stands out to you as the most significant emotions?

Rachel Coady (05:06)

When it was first starting, I think I was kind of in denial, frankly. I was really shocked and surprised about these changes that were happening and how they were showing up. I think as the journey progressed, I definitely felt more overwhelmed. I felt uncertainty. I had resentment for other people in their lives who didn't have to deal with this and I did.  And for the record as an adult, that wasn't just like a family member/sibling feeling, that was like socially, 

Shoshawna Rainwater (05:37)

Yeah.

Rachel Coady (05:38)

I envied that people didn't have this thing going on for them in their life with their parents or, you know, they were able to focus more on their careers or whatever. I definitely felt a lot of sadness and grief. I think witnessing your parent change and struggle and go through this disease is a sad experience. It's a sad human experience often for people. 

Shoshawna Rainwater (06:04)

Yeah.

Rachel Coady (06:03)

To your point that you just made, ultimately, and especially as time has gone on since my mom has passed, I also feel a lot of gratitude and that there was a lot of honor in getting to be a caregiver for her and actually honor in that role reversal that you're talking about. So, it was the whole kitchen sink, if I'm honest. was all the feelings. There were moments of fun. There were moments of joy. There were moments of total stress. Like it really was, I'm not a parent, but probably not unlike parenthood in just the kind of, it's all the feelings. It's a really big experience. 

Shoshawna Rainwater (06:39)

Well I think you had a very common experience in that you felt the full range of human emotion and with significant feelings of grief and loss and sadness and resentment. I agree. I think it's very common for us to be resentful that others get to just continue on life without dementia. 

Rachel Coady (07:03)

Yeah.

Shoshawna Rainwater (07:04)

I have had those moments, too. And I also hear people talk about significant resentment of the disease.

Rachel Coady (07:13)

Mm-hmm. Yes. Yes. Yes. And I felt deep anger.  This is a thing that I really worked on and remind myself is I was   angry at the disease, I tried not to be angry at my mom's journey or my mom's experience with the disease, because I knew that she was doing her best. But yeah, massive amounts of anger. I will- I think I will always feel anger towards this disease.

Shoshawna Rainwater (07:37)

Yeah, you know, anger is good in that it helps us understand where our boundaries are being violated. And I think there's such a significant sense of overwhelm in this role as adult child. We  are working so, so hard to help our parent live well with cognitive decline while also balancing all of the other things that come with just being human. And so I think anger and overwhelm are sort of hand in hand. And yes, the resentment towards the disease and the disease experience I think is really significant. And I hear people say that a lot. 

I think recognizing, too, that raising a child and caring for a parent with dementia are fundamentally different experiences. And I hear people often draw a parallel. They'll say to me, “my parent raised me, so now it's my obligation to care for them.”  And there is so much I think grace and merit in showing up for our parents and caring for them through the dementia experience, but it's not the same as raising a child.  It's fundamentally harder. And raising kids is hard because it is such a landscape hallmarked by loss and changes in abilities.

Rachel Coady (09:03 )

That reversal, like when you're raising a child or you're around children, it makes sense sometimes that they're growing or they don't understand something or they're learning still. 

Shoshawna Rainwater (09:14)

Yeah.

Rachel Coady (09:15)

And when you're watching someone lose that skillset, who's had it for the majority of their adult life, that like doesn't make sense in our heads at all.  It does feel different.

Shoshawna Rainwater (09:27)

The last point I'll make on this about knowing and expecting that the relationship will change is that a lot of people share that they feel like they've lost a confidant and a person of significant guidance. And I feel this in my bones when I think about my situation with my parent. I had one of my siblings share with me the other day as I was preparing for this episode, they said, “Mom was the person I went to for guidance and knowledge and support and just a level setting, helping me understand, ‘how should I see this? How should I deal with this particular issue in my life that I'm dealing with?’” And that cognitive skill of being able to perspective take and show up in that role changes in dementia. And that can feel like a significant loss for us.

Rachel Coady (10:14   )

Oh yeah, I feel like the only person I wanted to turn to for comfort and guidance was my mom. And she was unavailable, you know, I couldn't talk to her about her. So yeah, that was really true in our journey. I just really missed her.

Shoshawna Rainwater (10:30)

Yes. And we talked in previous episodes about ambiguous loss and how it is really a strange human experience to be missing someone who is still alive. 

Rachel Coady (10:44)

Yeah, and on that journey, just the loss of not being able to turn to the one source you often went to is, it's hard. What are some things that you think really can make a difference for people who find themselves in this role?

Shoshawna Rainwater (10:56)

As hard as it might be, I think taking the time and energy to educate yourself about the expected disease experience that lies ahead and the common losses and changes that come with dementia , can be helpful.  When we talk about dementia, it's hard to feel like you have helpful or hopeful information, but the alternative to not educating yourself and understanding the common losses is that you will be more shocked than perhaps you needed to be about the things that are coming. Many humans cope better when they can prepare and be supported through what's coming. If that wasn't a true statement, I couldn't do this work or wouldn't be doing this work. 

And so it can help depersonalize some of the more common things, such as the really common experience of having your parent forget who you are, which is one of the most difficult, I think, milestones in the disease experience.  With my own parent, I knew that that was an that that was coming. I didn't know when and just in many things in dementia, we don't know when it's going to happen, but we know that it's likely to happen. And so it set up kind of a dynamic where for as long as she did recognize me, I was so grateful for it. Like, “Oh it’s a good day. She knows who I am. She understands this relationship.” And then when she lost that ability, I knew not to take it personally. As hard as that is.

Rachel Coady (12:30)

Yeah, you were able to kind of anticipate or know that that would be a part of the journey. So when it arrived, you weren't like shocked and devastated. I love that you're able to be grateful for kind of what's available when you know more about what will change.

Shoshawna Rainwater (12:44)

I knew that it wasn't about her not loving me enough to remember who I was. I just knew that it was probably going to come at some point in the disease experience. And so when it happened, which like everything in dementia, it doesn't often happen in a one-and-done experience. She kind of toggled for a while between kind of knowing who I was and not knowing who I was. Now she consistently doesn't know who I am. But I could depersonalize that, for something that is so deeply personal–to be forgotten by a parent. It's one of the hardest pieces. 

And also being able to sort of speak that out loud and share that with others and hear their feedback of like, “Oh man, I remember that milestone and man was that hard. And I knew I was deep into a new relationship with my parent.”

Rachel Coady (13:29)

Yeah, I think this idea of you're starting this journey and someone says, “I'm so sorry. One of the great things you can do is educate yourself.” That was actually hard for me… 

Shoshawna Rainwater (13:42)

Mmm.

Rachel Coady (13:43)

… because I didn't want to learn about this disease. I didn't want to spend my time reading and learning. It is a thousand percent why I'm making this podcast with you, because it felt to me like I had to enter this club I didn't want to go into and spend a whole bunch of time and resource on stuff I didn't want to learn. And it felt really lonely. 

Shoshawna Rainwater (14:02)

Yeah.

Rachel Coady (14:02)

And I hope that with this podcast and the way we're talking about and framing this disease journey and supporting people's understanding that you see your openness that there's a huge community of people that are going through this. Also, there are lots and lots of resources. Hopefully we're bringing more of them to you and that by knowing more about what could be coming in this disease, you can have a much better navigation experience in going through it. That was tough for me to feel this ownership of like,”now I have to learn about this thing I don't want to know about,” but it ultimately did help me and I think led me to really wanting to create this with you. So it didn't feel so overwhelming to have to become educated on this disease. 

Shoshawna Rainwater (14:46)

The last part around things that might help you cope with feeling like you've lost a confidant and a person of guidance is I found myself really longing for connection with other elders who knew my mom and were also sort of in the same age cohort as her. So I found myself really leaning on my aunt, my mom's sister, as a person who just is a knowledge keeper but also has a historical knowledge of who my mom has been throughout her life. So I felt like I was really longing for connection with people like my aunt and then others who knew my mom…

Rachel Coady (15:24)

Yeah.

Shoshawna Rainwater (15:24)

… and could help me. I wondered about that for you, too, because I know you have a large extended family of elders.

Rachel Coady (15:31)

Yeah, spending time with other elders that knew her and even spending time with, you know, cousins who just really knew her. I needed people around me that understood the person that she was and her fullest potential and could also help me     absorb some of the loss and experiences and journey that I was on. And, my sister was a huge part of that, obviously, but it did help to reach out to others that knew and loved my mom and were more of kind of her generation for sure. 

Music transition

Rachel Coady (16:10 )

Speaking of siblings, if an adult child caring for someone with dementia has family, and you and I both do, not everybody does, but what are some of the things that you've kind of seen transpire in a family when there's adult caregiving for a person with dementia?

Shoshawna Rainwater (16:29)

Yeah, if you are a person who has siblings, you can expect there will be changes and challenges in the relationship. And this is because dementia is a diagnosis that impacts the entire family system. So anyone who is in relationship with this person with dementia is touched by it and impacted by it. And this is particularly true when we have multiple adult children of the person living with dementia. So, this is usually due to just simply the fact that everybody emerges from their childhood experience with their own narrative about what it was like. And sometimes there are some commonalities and other times you're like, “my God, did you grow up down the street or did you grow up in the same house?”

So there are a lot of differences in perspectives on the historical experience of being raised by this parent that can impact closeness that can impact people's willingness or desire to be involved. And then there are, I think, changes in the relationship that come from being geographically further apart. So it's not uncommon for there to be a local kind of boots on the ground adult child and then perhaps, if there are other adult children, then they may be out of town, out of state, far away, which creates a unique perspective on the disease experience because if you live out of state and you visit every three months for three days at a time, your experience of the person living with dementia, of your parent, is gonna be wildly different than the person experiencing a day to day.

Rachel Coady (18:11)

Yeah. The other thing I imagine just has to be a part of this is that we all have different relationships with our parents. And so there could be a sibling that was    closer in some ways to dad or to mom than others. 

Shoshawna Rainwater (18:28)

Mm-hmm.

Rachel Coady (18:29)

And I imagine that like, because they were closer or their birth order or something, they might be more in a like their siblings or their family, or they might think they're the one who should do the caretaking or who should be in charge of that or something. So, it's not just kind of who's close by, but also like who wants to own this? Who feels closest? Who understands mom the most or, who's available, who's not, who has kids, who doesn't? 

Shoshawna Rainwater (18:56)

Right.

Rachel Coady (18:57)

There's a lot of questions and I think one of the things I would say, not from my own experience, but more from seeing those around me, is that the danger is that there's a lot of assumption… 

Shoshawna Rainwater (19:07)

Mm-hmm.

Rachel Coady (19:08)

… that as the disease kind of slowly progressed, everyone has a slightly different idea of who's going to be in charge and who's going to do the caretaking. And one of the first pieces of advice I give to friends of mine who are starting to need to be caretakers for their parents is to have the conversation and figure out what everybody thinks is going to happen…  

Shoshawna Rainwater (19:31)

Hmm.

Rachel Coady (19:31)

…and then decide as a family. Because I can almost promise you there's different ideas. And I think it comes back to just really looking at all of the factors. And particularly with dementia, there's a special kind of caregiving or attention or support that might be needed compared to other aging diseases; but really breaking down and looking at what we think the care plan is together and maybe asking what we think the care plan that mom or dad would want is, you know, like making sure we're agreeing on that stuff. So, the sibling complexity has to change things up in this, too. It just seems like it would make things more complicated.

Shoshawna Rainwater (20:14)

Yeah, and it can be both. It can be both really helpful to have other human beings on the journey with you that can help with these pieces. And it can also work against you if there's high conflict. 

Rachel Coady (20:29)

Yeah, well, there's siblings that don't get along, you know, like, if there's siblings that just are not in great communication, and then this happens,  that is a really I'm imagining I had a very supportive sister in our journey, but that has to be a very complicated thing to navigate.

Shoshawna Rainwater (20:46 )

Yes. And oftentimes, especially in high conflict families, historically, communication can sometimes have flowed from the parent. So siblings who don't get along oftentimes are getting their information from the parent… 

Rachel Coady (21:02)

Yeah.

Shoshawna Rainwater (21:03)

… because the parent typically feels like they've got a vested interest in keeping everybody in the family system informed. And when a parent starts to develop dementia and loses the ability to be a good and accurate reporter of information, this can really shake up families. They lose that primary source of good communication. And so a family meeting early on in the experience to talk not just about everybody's expectations, but also it's hard to develop a care plan if you don't understand what the disease is going to look like. I think a family meeting early on to say “our parent has just received a life changing diagnosis and it's not just life changing for them, it's life changing for everybody who cares about them. And how can we get ready,  as a collective group of people who care about this person deeply? And let's get those assumptions and expectations out there.”

Rachel Coady (22:01)

And I think the other piece that was important, I really admire my sister highlighting this at the beginning of our journey was, I think she said something to me like, “we're going to lose our mom to this disease, but we can't lose each other along the way.”

Shoshawna Rainwater (22:17)

Mmm.

Rachel Coady (22:18)

“We have to take care of our sisterhood. We have to set up some kind of plan that will help us be able to be each other's sister still and support still and be the daughters of our mom and be the caretakers for our mom from two different locations.” 

So these are hard conversations. And I do think having a person facilitate–you facilitated often for me and my sister, and that was amazing for us. But I think that the importance of setting up communication boundaries, ideas around how often you wanna talk, the topics you're gonna need to cover; what kind of communication updates come through about your loved parent? What kind of boundaries do you both need as individual or all need as individual people? How are you taking care of yourselves in this journey? Like there's a lot to discuss and unfortunately these are conversations that we're just not very good at having period because they're sensitive topics and hard topics, but it really does help to go through the journey if early on you can establish and have some of these challenging conversations with your loved ones upfront.

Shoshawna Rainwater (23:25)

I just want to name what wisdom your sister had to see that and to want to hold sisterhood, siblinghood as one of the highest, most important values here in this experience. 

Rachel Coady (23:37)

Yeah.

Shoshawna Rainwater (23:37)

And our sibling relationships are actually our longest family relationship. We will be in relationship with our siblings longer than we will be, in most cases, longer than we will be with any other person that we are related to. And I see relationships with siblings blow up time and time again. And I think part of the reason is that people are operating    with poor information and guidance about the disease experience, but also because they have assumptions.

Rachel Coady (24:09 )

Yeah.  You know, a friend of mine called yesterday and just wanted some counsel on going to see an elder whose cognitive abilities seem to be changing. And I just thought, you know, “the reason why you're calling and why you care is because this is scary.” 

Shoshawna Rainwater (24:23)

Yeah.

Rachel Coady (24:24)

“It's scary when you see that there's these changes going on with someone you love.” And I just think that's, um, we have to be brave and we have to feel togetherness in this. And still have the hard conversation. 

Shoshawna Rainwater (24:35)

And I would say too, it's really normal to feel completely engulfed by the role of the caregiver. 

Rachel Coady (24:40)

Yeah.

Shoshawna Rainwater (24:41)

And establishing boundaries early on in the experience or as early on as you can. And essentially expectation setting. And when I say expectation setting, I'm talking about one direction. I'm talking about lowering your expectations for yourself and others. I'm never going to tell somebody you should have higher expectations for yourself in this disease landscape. I shouldn't say never, but I've never, ever felt compelled to say that.

Rachel Coady (25:07)

Yeah, our nature as people is to have very high expectations for ourselves and for the loved one. Yeah, and that's not helpful.

Shoshawna Rainwater (25:14)

And we want to show up perfectly in this disease landscape; this disease landscape is too complex to be able to show up perfectly. Brene’ Brown says, “good enough is the new perfectionism.” 

Rachel Coady (25:26)

Yeah, I think that's like you're going to have to give yourself grace, lower that bar, really look at the ways that you're showing up and doing the best you can because that high expectation thing will just rob you of so much energy and joy and hope on this journey.

Shoshawna Rainwater (25:44)

And also naming that, not in all situations with our parents, but in many cases, there's a normal sort of deference, letting the parent be in charge. There's a deference towards the people who raised us. You know, these have been longstanding, in many cases, longstanding, highly competent people. And there's a really understandable reluctance  to wanting to have to start to take charge of their life, which eventually will need to happen. Someone will need to step in and make all decisions for this person if they live long enough into the disease experience. And it creates both a necessity to set and hold and keep your boundaries, but also there's an understandable like, ”my gosh, how do I hold a boundary when this role is so enormous and this person needs so much from me?”  Which brings us back to previous episodes about developing a team.

Rachel Coady (26:39)

Yeah, and just self-care in the journey for sure. Yeah, check out other past Hope Floats episodes if this is your first episode. I think you'll find a library of things that can definitely help as an adult child caregiver.

Music transition

Shoshawna Rainwater (27:03)

So Rachel, I wanted to take a minute to talk about the unique experience of caring for a parent with dementia from a distance as an adult child. We talked a little bit about it in the sibling set, one person being local, one person being far away, but I wanted to speak specifically to the experience where if you are perhaps the only involved person and you're trying to do it from afar.

Rachel Coady (27:27)

I think even though most adult children do live, within a quote unquote regional local radius of their parents, it's not necessarily down the street or in the same household or in the same neighborhood anymore. And sometimes it very much is in other states or other other countries even for some people. So, that distance it has to complicate how you can care give because you can't immediately be there. And you have lots of responsibilities probably in addition to looking out for your loved one. 

Shoshawna Rainwater (28:00)

Yeah, and I think something interesting happened during the pandemic in that video conferencing or video visits with people, the Zoom boom, became utterly normal.  Much more so than prior to 2019, there's a significant amount of visiting that might be trying to happen over video. But video even is limiting in its ability to tell you what's really going on. So much of what's going on with your parent when you live out of state or if you're trying to care from afar, a lot of it, of what's going on with your parent goes unseen or might be, or unwitnessed or might be being reported to you secondhand by other people who are local to your parent. And sometimes that secondhand information can feel like helpful intel, and sometimes it doesn't feel helpful at all. Sometimes it feels like both of those things. 

But caring from afar creates unique challenges to be able to really feel like you have a good sense of what's going on, particularly early in the disease experience when you know things are changing, but you're not quite sure how bad this is.   And visiting a parent can be costly. It can be, I don't want to say inconvenient, but it means that somebody at your life back home–either work or your family back home– you're stepping away for a few days, and that can be challenging. 

Rachel Coady (29:31)

One of the things that, it was early when we started to realize some changes were happening, I was seeing my mom, I want to say, once or twice a week; but other family, other people were visiting throughout the week and I started to hear some questions and concerns from those visits. So even when I was local and seeing her, I was not fully open and paying attention to the same exposure that other people were seeing collectively. You know, if she was having four to six visits a week from different people.  But there started to be little hints and signals that even I wasn't seeing with one or two visits a week. And so parents show up on FaceTime and Zoom and, but when the video's off and you see that house or you, you know, someone's out for a walk with your loved one and they notice something or they're driving with them and they notice something like, we kind of have to piece together these different inputs to really get the picture of what's going on.

Shoshawna Rainwater (30:32)

Yeah, and there can be a lot of informants, right? People reaching out to you and saying, “I'm seeing something different. Something's changing or not quite right.” Or, “I saw this today, what do you think?” 

Rachel Coady (30:43)

Yeah.

Shoshawna Rainwater (30:44)

For the person who's living out of town, one of the resources we've spoken about on this podcast that I'm a big supporter of is the Dawn Method, D-A-W-N Method.  And Judy Cornish, who's the creator of that method, has some really great insight into the length of a visit. When you live out of town, out of state, that the visit needs to be a minimum of 72 hours. So ideally four to five days minimum, which I mean, that's somebody's vacation time. 

Rachel Coady (31:17)

Yeah, that's a lot of time. Yeah.

Shoshawna Rainwater (31:20)

That's not a long weekend, right? It's a lot of time. And the reason that she recommends that is that particularly early on in the dementia disease experience, people can sort of “up-perform,” rise up to the occasion, and you really don't get a good sense of how this person is truly doing until about the 72 hour mark when it becomes incredibly difficult for them to continue to be able to perform. 

Rachel Coady (31:46)

Yeah. Yeah.

Shoshawna Rainwater (31:48)

That's really true for a lot of people in early dementia. So, Judy Cornish recommends, if you want to get a good sense of what's going on for your person, you need to stay a minimum of four days; that's when you'll start to really understand, “oh gosh, this person is struggling with this, or this task, they can't do that any longer.”

Rachel Coady (32:06)

I just want to name here that there's something, I know we're talking about being a caregiver from afar, but my sister she lived out of state, she would come to visit and she'd come for three or four days. And my mom would totally rise to the occasion of that visit, exactly what you're describing, which for me as the primary frontline caregiver was so frustrating because my mom's brain seemed stronger, her energy was higher, she was making jokes. And she was in this dream role of being a grandma and a mother when my sister arrived. And so we'd have these very different experiences. 

Shoshawna Rainwater (32:40)

Mmm.

Rachel Coady (32:41)

And I would try to talk to my sibling and say, “hey, this is also going on. I'm noticing this.” And she trusted me, thank goodness, and totally respected the information I was sharing. But I think just a nod to  the distance and the sibling dynamic is like, you can have different experiences with a person who's in this disease journey that really vary even between the caregivers. And I think I kind of got to be like the annoying, you know, over time she started calling me my mom, my caregiver, my keeper. She never called my sister those things. 

Shoshawna Rainwater (33:09)

Mm-hmm, mm-hmm. Yeah, she wasn't in that role. 

Rachel Coady (33:12)

Exactly. 

Shoshawna Rainwater (33:12)

She wasn't setting limits the way you had to with your mom to keep her safe and successful. Aww.

Rachel Coady (33:17 )

From a distance my sister was able to witness and participate and help support on this journey in different ways, which we'll talk about, but it is to say like, let's name that the actual siblings in this journey can all have very different exposure and experiences,  too.

Shoshawna Rainwater (33:31)

Yeah, and your sister and you have a very functional, loving relationship, but imagine the scenario where the boots on the ground adult child has been telling the rest of the family, “something's changing, something's not right; I'm seeing this.” Then family comes to town and invalidates your experience and say, “I don't know what you're talking about. She's fine.”

So that is really common and really important for people to be aware of. So, again, disease trajectory and understanding the disease landscape. Let's normalize and make sure people understand that “up-performance” is really normal. But what it does is set up conflict or potential for conflict in the family dynamic because people don't see it the same way. They're not seeing the same losses. 

Rachel Coady (34:22)

So that is all to say that these more frequent visits, more inputs from multiple people can be helpful because at least you're getting different experiences on how the loved one is doing in order to try to piece together what level of care they need and then to start to journey of figuring out how to support them from afar.

Shoshawna Rainwater (34:42)

And let's remember, part of the reason for the variability in people's experiences of your person with dementia has to do with the incredible variability in the day-to-day–on-days, off-days, especially early on in the disease experience. So it isn't easy to know what to do with all of these informants and their information that I think is designed to be helpful.

And then the other thing that can happen if you are this adult child living out of town, out of state, and you come to help problem- solve and do some rapid support for your parent while you visit is that most of both medical and social resources do not move lightning quick. 

Rachel Coady (35:30)

Yeah, it's not something you can do over a weekend. 

Shoshawna Rainwater (35:30)

Right, right, and all those entities that have bankers hours are closed, right? So the need for rapid problem solving during visits, adult children are wildly disappointed by how it goes. And so that creates a dynamic where the follow-up actions, the return phone call that doesn't come for another four days means that phone call is coming when you have returned back home. 

Rachel Coady (35:56)

Mmm-hmm.

Shoshawna Rainwater (35:57)

And so you're left trying to follow up on things from afar, trying to do problem solving by phone, or trying to make things happen in subsequent visits.  And so it brings up this question for people when it starts to feel unsustainable, one of the questions that comes up is “my parent or myself, which one of us is gonna move closer to the other? Whose life is easier to uproot? Who can relocate with less complete overhaul and distress? How sustainable is the current plan to continue visiting? These are common things that come up.

Rachel Coady (36:30)

And I think another thought many families look at is who can mom or dad move in with? How do we move them closer to us? It's hard for some families, especially with multiple generations, to move back to mom and dad. But maybe it's more about who has their guest room that can become their bedroom or where are they going to move? 

Shoshawna Rainwater (36:51)

Yeah. 

A listener asked us to speak specifically to the challenges of something kind of unique here, which is that of being a healthcare professional and an adult child and living afar from your parent with dementia. And sort of the unique complexity this listener was sharing that this can bring up feelings of guilt, of frustration that some of the skills that you have as a professional aren't being utilized. Being able to ask good questions of staff or ask good questions of neighbors, observing your parent in their particular environment, those things aren't as available. And I think healthcare professionals who are adult children caring for parents from afar can feel particularly guilty and even feel neglectful.

They are not neglectful in the majority of cases, but I think they can feel that way. And in their daily work and their daily lives, they can see the difference it makes when family members are actively involved. In the work that they do, they see that people who have adult children or other primary people supporting them makes a difference in the quality of life for that person.

Rachel Coady (38:08)

Yeah.

Shoshawna Rainwater (38:09)

And I think it can also lead to feeling guilty about using our skills to help others, but not being as present for the people that raised us.

One of the other challenges of being a healthcare professional is this heightened awareness of the difficulty of practicing your own professional expertise from afar by phone or through these episodic visits. You know you've got the skillset that could be helpful and make a difference. And it is really difficult to do that by phone. Try to connect with and establish good ongoing relationships with a resident care manager at mom's memory care facility or through these episodic visits. It's just fundamentally harder to do. So again, if it's possible financially to hire someone to be the eyes and ears and advocate on the ground for you, that can be helpful.

Rachel Coady (39:07)

Mmm-hmm. It feels important to name in this episode, we recognize not everybody had great relationships with the people who raised them. 

Shoshawna Rainwater (39:21)

Mm-hmm.

Rachel Coady (39:22)

They had challenging or even really hard relationships with their parents. And there is something I think really challenging about kind of surviving some of the hardships of our childhoods growing up, hopefully getting to kind of heal and move on and build our lives, and then to hear that this person is gonna need care and support and that that likely will come from you as their children. I'm not here to say I have advice on how you navigate that, but I wanna acknowledge that that is a real experience and I'm guessing one that's complicated and maybe looks at like a care journey where you get support from other third parties or the state or something that can help when you just have boundaries on what you can and can't provide for that person. 

But I don't want to go through this episode and not acknowledge that that is a real scenario. I'm sure for a lot of people who do not want to take care of the person who was supposed to take care of them.

Shoshawna Rainwater (40:20)

Yeah, I agree, Rachel. And it almost feels like it's its own episode bringing in an expert who has a deep understanding of how much familial relationships have changed in this century,  alone. And the really doesn't feel so uncommon to me, this parental cutoff that is often happening as adult children are trying to find balance in their lives and set boundaries. There's a lot of people initiating a parental cutoff and the majority of cutoffs between parents and children are initiated by the adult child. Much less so are they initiated by the parent, the older adult parent. 

And so I agree, I think that that's a really significant issue. And I think one of the challenges is that in this country, we don't have large factions of people just ready to volunteer and step in at no cost to provide support for your person. And so you can hire people to be your eyes and ears on the ground. And I think to circle back to this topic of how do I sort of support my person while I'm living out of state and I only get to see them episodically, you can hire caregivers or care managers to be your eyes and ears on the ground and then provide information back to you. And that comes at a price point.

Rachel Coady (41:50)

Mm-hmm.  Yeah, especially in a disease journey that takes, ultimately, time. It's hard to not be at work, not be at home tending to things, then not earning. And then to have new costs coming in, new resources needed for support in this journey, it's very complicated. 

Music transition

Rachel Coady (42:22)

So Shoshawna, we're covering a lot about the different adult child caregiving experiences, but there's a hopeful side to what we do. What are some things that could help people feel hopeful about their experience and what they can expect–things that might help make the experience better?

Shoshawna Rainwater (42:40)

Yeah, I would like to hear your input, too, as somebody whose experience caring for a parent is now completed. 

Rachel Coady (42:48)

Yeah.

Shoshawna Rainwater (42:49)

But for me, I think it can offer a clarity about what we want for our own futures and help us set our priorities. What is it that we value most? Help us sort of reset our priorities for our own futures. And I think about that a lot in my situation as I'm continuing to walk alongside my parent.

Rachel Coady (43:11)

One of the things that comes to mind, and I said this after my mom passed, is that I never would have known patience and unconditional love the way I do if I hadn't gone through that journey. And again, I would never choose that journey for anyone, but if someone is going through it and you are in a role of caregiving for them, you have the opportunity to deepen your understanding and grow in new ways around building patience, building compassion, building understanding and acceptance. That is an upside of being in the kind of throws and changes of cognitive decline. 

I am grateful for learning about those parts of me and that I could unconditionally love someone who's going through that disease. It was profound. It's still to this day the hardest thing I've ever done. But I am, I am a bigger and better Rachel for having gone through that. 

Shoshawna Rainwater (44:19)

Yeah. I asked my sister who is the eyes and ears on the ground frontline person for our parent, You know,” is there anything hopeful about this? What have you learned?” And she said, “you know, I've learned I can grow patience in a way I didn't know I was capable of and I can transfer those skills to other relationships in my life.” 

Rachel Coady (44:39)

Yes!

Shoshawna Rainwater (44:39)

And I thought that was really beautiful. I also think we can be hopeful that by educating ourselves about the dementia experience, we can reduce our stress load because it allows us to make more informed choices, to be proactive about addressing issues, to know that guilt and perfectionism and all of these pieces that are hard about caregiving, that those are really normal.

Rachel Coady (45:06)

I think the other piece that comes with that is that I am a part of a community that I wasn't before. I have a very strong relationship with you because of going through this journey. And that is to say that if you look for it, you will find a community that is here to support you and help you and share their experiences and listen to yours. And that was a great resource for us when we were going through the experience. It is still a club that you're a part of. 

Shoshawna Rainwater (45:37)

Mm-hmm.

Rachel Coady (45:37)

Once you've been an adult child caregiver for a person with dementia, that doesn't go away. And it's actually a superpower to be able to continue to support people in that community and to help people recognize they're not alone, that there's actually a lot of us that know this experience. And that's a pretty amazing thing to get to be a part of.

Shoshawna Rainwater (45:57)

Yeah, I mean, it might be kind of the most important work out there, in my opinion, is to show up well for each other in our human family, right?  I see you showing up so well for people over and over. I know your journey in caring for your mom is over, but your wisdom and your knowledge and your compassion endures. And that is a huge gift for people who are still in this experience or just beginning this experience. And I think it also, this is an opportunity to seek human connection with our parent that is not based on prior abilities or hypercognitive abilities, which tend to be what we value in our society…

Rachel Coady (46:41)

Yeah.

Shoshawna Rainwater (46:41 )

… but rather on developing connection just because, because a person has value and the dignity of human life, regardless of abilities.

Rachel Coady (46:53)

You know, that's such a good point. There was playfulness and creativity and silliness with my mom as her disease changed that I don't think we would have shared as adults had she not had that experience; and being present in that moment and, you know, using improv or dressing however she felt like dressing that day and me being okay with it and us listening to silly songs and funny music and a lot of language like touch and compassion and music was a language that we shared. There are a lot of experiences that were really rich in the hardest parts of her disease and then those are available and they are different than the things that we've built in adulthood with our parents, oftentimes, but I'm so grateful for them. 

Shoshawna Rainwater (47:39)

Yeah, I've heard those stories a lot that there can be kind of a levity and a silliness in these moments, too, with our parent. And my sister mentioned that, that “mom and I laugh together a lot. 

Rachel Coady (47:55)

Yeah.

Shoshawna Rainwater (47:56)

“We find silliness in things that I never knew we were going to find silliness in.” And sometimes that kind of has to be where we find the joy.

Rachel Coady (48:05)

Yeah. And to me, it was always related to letting go of the idea that I was going to control it or fix it or make it better. Once I understood that wasn't going to be an option, I had a lot more available to me to be creative and compassionate and silly and present.

What do you think are the most important parts as you support a person with dementia?

Shoshawna Rainwater (48:28)

I think getting really clear about what is most important as you go on this journey with a person living with dementia. You're not going to be able to do it all. So what are the most important goals as you support this person? Are we going to lean into trying to make every day the best possible for them, therefore enhancing quality of life?  Are we going to attempt to maintain and do all we can to maintain balance for all the people involved? But getting really clear-eyed about what is your most important priority as you go into this journey with your person? Because it won't be possible to have all the things.

Rachel Coady (49:11)

Our goal was dignity. And we kind of branched out from there and like, “well, what does dignity look like for her based on who she was and how she lived?” But t  hat was a big part of how she lived. And so I think just thinking about what's that right balance between what you're capable of offering for care and what's true to the person that you're caring for feels like a really good North Star to aim for.

Shoshawna Rainwater (49:35)

I think accepting that the relationship you once knew will fundamentally change is one of the most important things that we can do that will help you improve your experience. A nd that you will have a new relationship and that within that new relationship, there will be significant losses and there will be grief. And as we just mentioned, there are opportunities to find some of the more joyful parts of being in relationship with a person with dementia.

Rachel Coady (50:04)

Your experience can be greatly improved by just realizing that you're not on the journey alone. There are great sources we've talked about in a lot of episodes, but resources, communities, support groups, online groups, Facebook groups that you can join where you'll find peer support and people who really understand and help you feel belonging in the journey that you're on. And that was so valuable for us as we navigated that.

Shoshawna Rainwater (50:32)

You can also discuss ahead of time and have a sense of what your plan B will be when your parent needs around-the-clock care.  In previous episodes of this podcast, we've talked about what moderate and end-stage dementia look like. By the time a person has moved into end-stage dementia, they will need round-the clock-care, if not earlier and sooner. It's one of the most foreseeable things that is coming. And so having a plan B for when your parent will need that round-the-clock care can help save you some valuable time and energy down the road.

Rachel Coady (51:11)

Today we talked about the challenges of caring for a parent with dementia as an adult child caregiver. We talked about how that relationship can change family dynamics and personal dynamics at home. We talked about the challenges of caring for a loved one from a distance and the things that can be hopeful and make this journey better. We'll be back soon with more episodes of Hope Floats. Until then…

Shoshawna Rainwater  (51:25)

Thank you for all you're doing and thank you for listening.

Rachel Coady  (51:38)

Take care.

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  (52:00)

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  (52:20)

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