In the eye of the storm- Understanding Mid-Moderate Stage Dementia

In this episode of Hope Floats, Rachel Coady and Shoshawna Rainwater explore the complexities of moderate-stage dementia, discussing the emotional and practical challenges faced by caregivers. They emphasize the importance of understanding the changes that occur during this stage, including neuropsychiatric symptoms and the need for increased support. The conversation also highlights coping strategies and practical recommendations for caregivers to enhance safety and well-being for both themselves and the individuals they care for. They explore the importance of leveraging technology, understanding mid-stage management strategies, and the necessity of caregiver support and self-care. The conversation emphasizes the need for caregivers to prioritize their well-being and offers practical tools for creating a calming space amidst the challenges of caregiving.

Takeaways

• Mid-stage dementia presents unique challenges for caregivers.
• Neuropsychiatric symptoms are common and often misunderstood.
• Caregivers may experience a range of emotions, including anger and frustration.
• Sleep disturbances can significantly impact both caregivers and those with dementia.
• Home safety evaluations can enhance the living environment for individuals with dementia.
• It's essential to adapt caregiving strategies as the disease progresses.
• Support from medical professionals can help manage symptoms effectively.
• Caregivers should permit themselves to feel their emotions.
• The journey through dementia is not static; it will change over time.
• Connection with other caregivers can provide valuable support and resources. Using technology can enhance caregiving efficiency.
• Caregivers should proactively seek breaks and support and determine self-care practices.
• Support groups provide understanding and community for caregivers.
• It's essential to communicate needs to healthcare providers.
• Planning for caregiver coverage is crucial for sustainability.
• Adapting daily activities can maintain dignity for those with dementia.

Transcript

Rachel Coady (00:04)

Welcome to Hope Floats, a podcast for people navigating the challenges of caring for a person with dementia. I'm Rachel Coady, a professional certified coach and previously a daughter and frontline caregiver for a mom with dementia.

Shoshawna Rainwater (00:18)

And I'm Shoshawna Rainwater, a licensed clinical social worker who offers guidance and support to people who are caring for a person with dementia. I'm also the daughter of a parent living with a diagnosis of dementia. On today's episode, we're going to dive into the world of moderate-stage dementia, exploring the common features and challenges that we typically see, as well as how to support caregivers in this uniquely difficult and challenging stage. So let's jump in.

Hi, Rachel.

Rachel Coady (00:52)

Hey Shoshawna, I'm coming in hot today! I'm really excited to get to spend some time with you and talk about this mid-stage experience. And I just want to name that this week especially, I am feeling the need for the work we're doing and it makes me believe so much in trying to connect with more caregivers and talk about this because all around me.  I'm seeing this need of being met with end stages of care and caregiving for parents by a lot of my peers and family members. And it's just so important that we try to get more people resources and help more people connect around how to navigate this part of adulthood. So, thanks for being here. I'm fired up and excited to talk about mid-stage.

Shoshawna Rainwater (01:36)

I love that. A fired-up Rachel Coady is always a good thing, listener. I'm coming in today with some energy as well. Maybe that sounds strange around the topic of mid-stage or moderate-stage dementia, but there's a lot for our listeners to understand and be guided through in this particular phase. Let's jump in.

Rachel Coady (01:57)

Yeah, know, right off, maybe we can just level set like in what we're calling mid-stage dementia, what's going on for a person with brain changes and what can a caregiver expect in this stage of dementia?

Shoshawna Rainwater (02:12)

Great question. I've actually been thinking a lot and pondering quite a bit how to talk about this part of dementia with you, listener. And I'm really wanting to thread a needle between offering you really good information and also making sure that you remain somewhat hopeful about your experience ahead. I think it's really easy to hear all the characteristics and features about what is normal and sort of common in mid-stage and to feel really quite concerned or hopeless about that. What are your thoughts, Rachel? You've been a person who has walked alongside a person through mid-stage.

Rachel Coady (02:54)

Yeah, I mean, this is why we made this podcast is like, it feels like an ocean of despair and hardship. And there actually are options. There are experiences that can help make this part easier and lighter. And yeah, I really believe in trying to get this information out to people. So thank you for being so thoughtful. I know you put a lot of effort into bringing the information we have today. Help us understand more about this mid-stage.

Shoshawna Rainwater (03:20)

Yeah, so permission for the listener, just listen, as it is right for you; you may want to take some breaks through this episode or come back and listen in portions or parts. So when I think about mid-stage or moderate-stage dementia, I'll use a metaphor that a spousal caregiver shared with me recently.

He was explaining that his wife, who is still very much in the early parts of the disease, is beginning to show and demonstrate changes that are concerning to him, but for the most part, they feel quite manageable. He talked about the worry about what's coming with disease progression as a “tsunami” that he's very worried about. And he said something really interesting, which was,  you know what, the beginning before a tsunami really gets its momentum, it tends to pull everything back out into the ocean, and it remains very eerily quiet for a short amount of time.  And he said, “that's the feeling I have right now. Things are very kind of eerily manageable, but I know that there's a giant wave coming, and I don't know how to cope with that.” And I thought that was a really beautiful metaphor.

Rachel Coady (04:31)

Yeah.

Shoshawna Rainwater (04:32)

And I think that in many cases, moderate-stage dementia does feel like an overwhelming tsunami or wave of unmanageable or depleting experiences for caregivers.  It is not just your imagination, listener; if you're in mid-stage dementia with the person you care about or that you're caring for, it is the longest, and it is also, by most markers, the most challenging stage that caregivers find themselves in. It tends to be where families feel sort of the most tripped up by the disease experience. 

Rachel Coady (05:10)

Hmm.

Shoshawna Rainwater (05:10)

If you'll remember from previous episodes, only half of people living with dementia have actually been diagnosed. And many of them who are diagnosed are not diagnosed until this stage. So people arrive in moderate stage, having been through the earlier parts of the experience and there becomes sort of no doubt, I think in the minds of people who are caring for them that this is actually very significant what's going on. 

So whereas, we talked about this in our last episode about early-stage can often feel like, “I don't know, what is this?” And “some days they seem pretty good and other days they don't.”  Mid-stage can still be marked by fluctuations in abilities, but usually the families that I've met with and the people I've met with who are caring for a person with dementia say, “There is no doubt we are in the middle of this.” 

Rachel Coady (06:03)

Yeah, it's real.

Shoshawna Rainwater (06:04)

It's real. Yeah. And most people living with dementia have several more years to go in the disease experience. The 2024 annual Hastings Center Report that talks a lot about the state of dementia here in the United States says that most people in mid-stage dementia have another three-to-six years to live through disease progression. And I think that's one of the very difficult things to hear as a person caring for a person in mid-stage when it feels quite overwhelming. 

One of the things as I talk more about what mid-stage typically looks like, I want to just normalize that it will feel very different than early-stage. What you saw in early-stage, listener, and what worked for your person with brain changes will likely not work any longer. And we're going to have to learn a new set of tools in order to cope with it. 

So what is changing in moderate-stage dementia? So, brain cells and the brain structure is continuing to be damaged by the dementia process.  Thus far, it's an irreversible process that people with dementia are going through. And because of the damage, the brain, which is the command center of our bodies, is less able to do the activities it once did in the same way. 

If you listen back to our last episode about early-stage, we talked about the losses that are typically seen in that stage. And we called those two different buckets of care. And in early-stage, we lose the activities that have to do with sort of our higher order thinking, things like shopping and transportation and finances and those kinds of things. In moderate-stage, the other bucket of activities–called ADLs–begin to really be significantly impacted. And these are things that we do to care for our own selves or bodies, things like dressing ourselves and bathing ourselves, grooming ourselves, toileting ourselves, those kinds of self-care activities begin to diminish in moderate-stage.  And people may still have the retained ability to do the physical act of say, brushing their teeth, but they may not remember to do so, or they can't focus long enough to do so. So in order for those activities of daily living to be done, they require , the person requires sort of a prompting and a kind of a step-by-step oversight of the process in order for it to be completed. 

Rachel Coady (8:46)

Mm-hmm.

Shoshawna Rainwater (18:47)

How you know you're in mid-stage is that people are needing more help with those ADLs. And in addition to needing more support with ADLs, there's something also likely co-occurring with the loss of ability to do those ADLs. And that is an increase in what the medical system likes to call “neuropsychiatric symptoms.” 

Rachel Coady (09:11)

What are those? That's a big word.

Shoshawna Rainwater (09:15)

Neuropsychiatric, that's like a six-syllable word for behaviors. So, these are changes that are happening in one's brain that create a lot of confusion. So these are things that manifest like agitation, anger, upset, suspicion, paranoia. These are the things that tend to become quite common in moderate-stage or mid-stage dementia and I think are the least talked about or least normalized.  And so when families find themselves in this, they are really upset by it. They don't understand it. And they wonder and worry that this is something either willful or significant in terms of now an overlay of, say, a significant mental illness. 

And I had a client that I was working with share with me as his spouse was moving into moderate-stage disease, he shared, “ya know, I'm really worried that not only does my spouse have dementia, but now she is also getting schizophrenia.” And I said, “well, tell me more about that. What makes you feel that way?” And he said, “well, because she's having hallucinations. So she's seeing and hearing things that are not there. And she's also having delusions, meaning she's now thinking things that are not true or accurate. So, he didn't realize that hallucinations and delusions are quite common in the dementia experience.

Some other things that we tend to see–so this is into that category of the neuropsychiatric symptoms–are forgetting who people are, which then can increase suspicion and paranoia because “why would I trust you if I don't know who you are and who you say you are?” Saying and doing things that society deems inappropriate. Or doing things in public that are sort of untoward from our societal lens. Those things tend to happen. 

There's also a possibility and this happens quite often for nighttime wandering behavior to set in–where a person is up at night and not just up and awake at night, but also agitated or perseverating on things or trying to leave the home and those kinds of things. So you might imagine that once those circadian rhythms and the nighttime issues start to change for your person that you're caring for, this has a very significant impact on anyone who is cohabitating with them, because it also interrupts your ability to get a good night's sleep. And that really impacts our health as humans if we're not sleeping well at night.

Rachel Coady (12:11)

When the sleep inconsistency started for our mom, we also saw it really affect her. So we felt like the decline really increased once the sleep was decreased. And we know sleep is important for all of us. But I think one of the things that's hard about mid-stage or moderate-stage and what you're naming is that there can be kind of a domino effect between some of the changes. And sometimes, when you can get, let's use sleep as an example, when you can then get a good night's sleep the next day might not have as many issues or it might still, but I think part of the tolerance and navigation of mid/moderate stage dementia is that there's a lot of inconsistency and that ability to kind of rely on the progression of what's happening changes; how much it could fluctuate, sleep, diet, mental well-being or outlook just changed so much depending on other factors that were also happening in her brain.

Shoshawna Rainwater (13:12)

Absolutely, yeah, that's absolutely right on. And I think it does create that fluctuation in the quality of the next day for both the caregiver and for the person living with brain changes. And I think because mid-stage is so uniquely difficult, the other thing that's happening, typically, is that not only are these neuropsychiatric sort of behavioral symptoms setting in, but typically, in many people, they still have a relatively high degree of physical ability. 

Rachel Coady (13:44)

Mm-hmm.

Shoshawna Rainwater (13:44)

So now you've got folks with strong limbs, doing things, navigating their way around the home or outside who have a very significantly impaired safety awareness or safety lens. And that is a combination that is really difficult. And it's why when people are talking about dementia progressing out of mid-stage and into later-stage, it's why some people say, “actually, they'll be better when they're worse.”

Rachel Coady (14:15)

Mm-hmm.

Shoshawna Rainwater (14:16)

Because some of those physical abilities will have diminished, which then if you have a significant nighttime wandering issue on your hands in mid-stage, and as it progresses to late-stage, a person might be awake, but they're essentially unable to get out of bed, they don't have the strength to get out of bed, that is a different set of challenges for the caregiver.

Rachel Coady (14:39)

Yeah.

Shoshawna Rainwater (14:39)

And so I just, I really want to affirm if you are struggling as a caregiver, caring for a person in mid-stage, it's because the stress is incredibly real. 

Rachel Coady (14:50)

Mm-hmm. 

Shoshawna Rainwater (14:51)

It's as hard as you think it is..

Rachel Coady (14:53)

Yeah, we used to say in coaching sometimes “you can't control the ocean. Learn how to surf.” And I think mid-stage is just a massive class in surfing because it is really different over time. And entering mid-stage can look one way, and the middle of mid-stage can look another way. And then the end of mid-stage towards late-stage, all of those behaviors and feelings and experiences really do change over that journey. Like you said, it can be up to three-to-six years for people.

Shoshawna Rainwater (15:24)

Yeah, a really long time.  So we talked a little bit about what's going on for caregivers. You're probably no longer doubting or questioning that you're on this dementia pathway. You are likely exhausted, overwhelmed, and maybe having all of the big feels, which include anger, irritability, and really giving ourselves permission as women to feel the feelings that are not as permitted for us.  It is really reasonable to feel angry about this. 

Rachel Coady (15:54)

Mm-hmm.

Shoshawna Rainwater (15:54)

And to feel irritable, especially if you're not sleeping. 

Rachel Coady (15:59)

Yeah.

Shoshawna Rainwater (16:00)

And you may become very concerned that maintaining the current plan is not going to be possible for that much longer. 

Rachel Coady (16:07)

Yeah, I want to acknowledge what you just said for a second with our listener, because I do think a lot of the people that are listening are experiencing this. And you are absolutely right it is completely valid to be feeling all the feelings and have overwhelm and sit with anger and want to express that. And the other thing I would say is that on your toughest days and your worst times, rest knowing that it will not always be this way. 

So when you and I were working together and you said this can be a three-to-six-year stage, my response was “hell no.” Right? Like “there's no way that we're suffering through this and doing this and she's not.” I was so defensive and so angry and so didn't want this for her. But the truth is in hindsight that it was not the same journey all through those years. Her disease progression, the way she learned to work with that, the way we got support from her medical team and other people to help with some of those neuropsychiatric symptoms really did change the journey for her. 

And so I just want to say in the throes of this stage, it will not be three-to-six years of the exact same experience. It will change. You will find support and there will be absolutely hard, devastating days, but that is not the only path, right?  And that's a big part of why we're here. So I just wanna say, we're gonna talk about what can help. And I would just offer the listener a deep belief that this journey will continue to change. And to your point, as it progresses, sometimes it actually gets better. So I just wanted to name that.

Shoshawna Rainwater (17:54)

Thank you, Rachel. You bring the hope in the Hope Floats title. (both laugh)

Music transition 

Rachel Coady (18:10)

Let's talk a little like what are some of the things that we can support listeners who are in this time with a person with dementia.

Shoshawna Rainwater (18:17)

Well, let's first talk about what might be practically helpful for the person living with dementia.  One of the things that we want to have, if you haven't already in this disease trajectory or experience, is to request from primary care a home safety evaluation. So this is something that typically can be paid for through Medicare and is ordered by a primary care provider.

And it sort of activates a referral to a home health team where a physical and occupational therapist might come out and lay eyes on the home and make recommendations about how to maximize safety in the context of a person whose brain is changing and is less aware of safety issues, but still has a real desire for autonomy.

Rachel Coady (19:06)

So I just want to clarify one thing. In this mid-stage, in that scenario, we're talking about someone who's in mid-stage dementia who's still living in a home, likely with a caregiver or caregiver support, and the physical therapist or occupational therapist home visit will come out and help kind of optimize that home environment for their safety. Is that right?

Shoshawna Rainwater (19:26)

Exactly. Yep, you got it. And they're likely going to make recommendations around things like door alarms… 

Rachel Coady (19:31)

Mm.

Shoshawna Rainwater (19:32)

… so that you are notified, caregiver, if your person is leaving the home, making sure a person is donning or wearing some sort of identification or safety bracelet or has air tags in the items that they might be taking with them if they leave the home. They might recommend cameras to help you better monitor what's going on for your person. That's sort of using technology to our advantage. And a home safety evaluation is something I believe is worth asking for or requesting through your person's primary care provider or physician.

Rachel Coady (20:07)

Mm-hmm.

Shoshawna Rainwater (20:08)

Also, learning about mid-stage management is a really good way to help your person have better days, which then helps you have better days. So things that were effective and worked in early-stage–for example, what comes to mind for me is like a written reminder for your person around being sure to take their medicines–Those written reminders are likely not effective anymore. And actually can be harmful because they may read it each time as something that is new information to them. So they may start to take their medicines much more than they should too often. 

And so realizing what is common in mid-stage is a worthwhile endeavor for you as a caregiver so that you can switch up how you do things. It is likely time then to move to a timer medi-set   system, those kinds of things. And we'll put on the website some really good resources. I'm thinking about Tipa Snow's work around really trying to understand and better manage the mid-stage stuff.

Rachel Coady (21:09)

And Shoshawna, when you do a diagnosis so you understand where your person is or you get the MOCA exam and they're in that mid-range, that's one sign. If you feel like some of the behavioral descriptions we're talking about are true to mid-stage and you know your person is on this dementia journey, I think a lot of these suggestions are okay to do even if it feels a little early. 

Ultimately, what we were trying to do was    to try to keep kind of in sync or ideally one step ahead of what was going to happen. And that's a little bit of a fool's errand because it's not like we can predict and know. But getting some of these things in place and I'll say this, presenting them as things that would be helpful to her and helpful to us was a great way to gain her adoption of them and for us to kind of have one more thing in place. 

So when we started to get an automated pill dispenser–we used the one by Hero–that was a way for her to make sure that she was getting her medications when she needed them. And I was notified through the app when she missed them. The way we presented that was not “you're starting to forget to take your medicine, so we have to put this machine in.” I went with, “it's really challenging for me to keep all the medications straight and this machine will do that for us. Would you be willing to let us try out this machine and take your medication this way?” So always just trying to be kind of one step ahead of what potentially would help her as her brain was changing, but also to present it in a way that still had dignity.

Oftentimes it was framed around how it would help me or my sister instead of it being her disease’s problem, were ways to kind of look ahead and try to set us up for as much success as possible to the extent that a person can, right?

Shoshawna Rainwater (23:07)

It was a beautiful workaround. Yeah. You were meeting your mom where she was at. And we talked about this in the anosognosia episode, but it's rarely a good use of your time and energy as a caregiver to try to explain to the person with brain changes, what's wrong with them and why they need this. So you adapted to that beautifully.

 A couple of more things that could be helpful here are to explore an adult day center opportunity. If that's available to you. What that is is a place where your person with brain changes could go and spend a few to several hours during the day. Some people have that plan in place for their person with brain changes five days a week, and some have it maybe one to two. Getting your person there and all of that is probably a separate conversation and requires a little bit of strategy. But that is something to start exploring and looking at because doing 24-7 caregiving in mid-stage becomes incredibly difficult.

Rachel Coady (24:06) 

Yeah.

Shoshawna Rainwater (24:07)

So let's talk about, what helps caregivers. I feel like this is where you have a lot of information to share with our folks. Usually, experts are recommending that there are regular daily breaks available or implemented for caregivers if you're caring for a person in mid-stage.

Rachel Coady (24:28)

I feel like if you could go back and talk to Rachel from a few years ago, what I would say to her is “think about your well-being, think about your team, and don't wait until you're at a breaking point to try to figure out how to get a break or to schedule time that you need or to get support from others.” When you start to feel you're entering mid-stage, proactively try to set up what breaks or support can feel like for you and try to hold that time because that's the only way that the battery gets partially restored, right? As if you can really say, “I’m gonna need”--to your point–”hopefully a regular respite or break from this” and find out who can be people that can help make that happen with you– versus kind of going until you're just depleted because by then you're going to need more and it's the well’s empty, right?

Shoshawna Rainwater (25:28)

Yeah, yeah, they say “nobody makes great decisions in a crisis” or it's much harder to make better, good decisions in a crisis. And we have fewer options typically available to us when we're trying to make really significant decisions under a time constraint like that. So  it's gonna feel like work, and it is work. And to your point that it helps preserve battery… 

Rachel Coady (25:54)

Mm-hmm.

Shoshawna Rainwater (25:54)

… and energy levels for caregivers is really true.

Rachel Coady (25:58)

And part of the reason why I also think it's so beneficial to put together kind of breaks for yourself or additional companion care or care support is inevitably one of those caregivers or a family plan to visit won't be able to, and you're going to have to step in and cover that extra time that you were hoping to have off. That's just what happens in any care situation, right?  And so making sure that you have some coverage planned, even when you think you don't necessarily need it and you're not depleted, is the only way to make sure that when you need to overextend, you have a little bit left you can give, and you can do it. 

And so I think if I could give myself advice, it would be to plan for more coverage than you think you need if you can, you know, or look at those care centers or breaks that you can take and then you can opt not to use them. But as the disease progresses, you will find out that you'll be grateful you took them. 

Shoshawna Rainwater (26:57)

I think support groups are also very valuable for caregivers who are in mid-stage. I think most caregiver support groups have people in it who are in this mid-stage with their person, and boy, do they get it. They get it in a way that people who are caring for a person still in early-stage may not. And it's really nice to have a group of people who you don't even have to say anything. They just get it.

Rachel Coady (27:22)

Yeah. You just feel seen. 

Shoshawna Rainwater (27:24)

Yeah. And then we talked about this briefly already, but just assimilating and learning those new care strategies when you do have a moment of bandwidth will help you understand and better cope with the changes that are happening in your person in mid-stage. And again, you'll need a different toolbox than you were able to call upon in early-stage. And you'll need a different one for late-stage. That's part of why we want to fold in regular breaks for you so that you have the endurance to continue learning how to be with your person as they move through these three really distinct phases of early, moderate, and late.

Rachel Coady (28:02)

I think this is another place where we could reference.  Listeners, if you listen to the early episodes or looked on our website, HopeFloatsPodcast.com, we had listeners make a self-care list. It's activities that make you feel good from, even bite-sized small things that you can do that kind of bring you comfort and bring you ease. And this is a great time to look back at that list or re-edit that list and really give yourself some of the things that soothe you. So, it can look like a walk outside, it can look like a bath, it could look like watching one of your favorite movies, making a coffee date with a friend. But as those things are available to you, this is the time, this is why you made this list, is to kind of get in and try to really comfort and take care of yourself in the off time that you have as a caregiver. 

And then the other thing I wanted to mention here, Shoshawna, you know, we talked about referencing who's on your team as a caregiver.  My team included my doctors and I let my doctors know in late early-stage or in mid-stage, that I was being a frontline caregiver for my mom and I was feeling a lot of anxiety and stress. And I felt like my cortisol was shooting up and my nervous system was kind of a wreck at times just because of all these changes you're talking about. And you're not only trying to help a person navigate these, but you're also oftentimes on the receiving end of their experience as they're going, you you're sitting with a loved one who's explaining some of the things that are hard for them. 

Once I let my doctor know what my day-to-day life as a caregiver was looking like, they had recommendations for me that were really helpful for my own nervous system and my own mental health. And so that's a member on your team that you can reach out to. And this is a good time when you're feeling overwhelmed to let people around you know what you need and what you're going through to see if there's some ways that you can get additional support you might need.

Shoshawna Rainwater (30:04)

I think that was really smart. I think our own primary care providers or people who manage our health need to know that we are in this role. There is a lot of very good data out there that says this impact of caring for a person with dementia significantly impacts our own health and well-being and our own susceptibility to disease.  And the person to share that with is probably not your person with dementia's physician, although they should care about your well-being,  too. But the person who's really in your corner or should be and needs to be in your corner is your own personal primary care provider.  And I had an amazing doctor while I was caring for my mom here in our home. And she was really, she put that at like the top of my diagnosis list was caregiver stress, related to caring for a family member. And she really cared about my experience. And I will not forget that.  Helped lower my cortisol levels just to know she cared.

Rachel Coady (31:07)

Yeah, and that is so real. We carry that with us and you will carry, you know, some of the stress and anxiety of this disease journey within you because that's just a part of being a caregiver. And it's on top of everything else you have going on in life already. So yeah, it was very helpful. And we really encourage you to let your doctors know or your support team know. If you're doing therapy, let your therapist know; let people around you know, so that you can get the support that you need and deserve as a caregiver, too.

Music transition

Rachel Coady (31:46)

One of our goals with each episode now is to kind of take you, listener, to a place where you get a moment of restoration or calm. What we want to do today is invite you to actually go to an imaginary Zen place. And this is for you to design.

So wherever you are, as it's available to you, I want you to close your eyes and try to think about an ideal place for you that is calm and safe and good and peaceful. And know that you're allowed to be there.

Take some deep breaths in this space.  And take a moment to explore it with all of your senses. What are you hearing? What are you seeing? What does it feel like? Maybe, is there a taste, is there a flavor to this environment?

Is there anything that you're touching? Is there a texture around you?

But imagine and get to know this special Zen retreat for yourself.

And this is a place that is always there for you to go to.  You can pause in the middle of your day. You could end a day this way. You might want to go to this visualization just before you go into a caregiving experience or maybe when you're finished with one. The secret here is that when your brain is visualizing this environment–when you're kind of mentally going to this zone– your nervous system and your brain doesn't actually know the difference that you're not there. Right?

There's research that says when we imagine and visualize an experience, it's the same things happen in our body as if we were actually going. The secret is that it takes practice because quickly other noises, and to-do lists will come into play. But my advice to you is to try to go to this Zen place as often as you feel like it supports you.  And know that it's just for you and that you're allowed to go there. You're allowed to have that space and spend time there. And the truth is that the more you practice going there, the easier it is to get there, right? But when you do that, when you spend time in this visualized Zen center, that's all yours, you can really relax your whole body, your whole being with a very simple micro break. And you don't have to go to a special retreat center to do this. This is within you all the time. 

So that's a tool you can use whenever you feel like you need it. But just go to your special retreat space. Have that moment. Take some time. Explore and daydream what that's like and let yourself just restore.

Shoshawna Rainwater (35:01)

I wonder if for people who feel like they just cannot or don't have that space to step away. Remember that the bathroom exists. 

Rachel Coady (35:12)

Mm-hmm. Mm-hmm.

 Shoshawna Rainwater (35:13)

It's usually not thought of as a haven, but it can be, and it can become a mini haven or retreat center for you. 

Rachel Coady (35:22)

Yeah, my car, like sitting in a parking lot is a place I could go to this, my Zen center or, you know, in between running an errand, just pausing–if you can look at something that's nature-focused, like a tree or water or something–and you can you can go there. Before bed at night, let yourself go there for a little bit and just spend some time.

I absolutely agree with you. It feels like we don't have any freedom or ability or permission to go to these places, but you have a lot of power within you, and you are allowed to let yourself go here throughout the day if it helps you continue on in your heavy work as a caregiver.

Shoshawna Rainwater (36:02)

Beautiful.

So on today's episode, boy, we took a dive, didn't we? Into mid-stage, into that kind of gnarly, challenging landscape. We talked a lot about what to expect in terms of what's common, things to not be surprised by if they happen. We talked about ways to better understand it and cope with it. And we talked about ways to support yourself as the caregiver in this really, really critical and important role.

 Rachel Coady (36:35)

We'll be back in a few weeks to take a deeper dive into late-stage, the final stage of dementia, and what you might expect in the later part of this journey, as well as support for caregivers who are in this role. Until then, we want to thank you for doing all that you're doing, and thanks for listening.

Shoshawna Rainwater (36:53)

Thanks, everyone.