Navigating Moving in Dementia- Part 1.

Summary

In this episode of Hope Floats, hosts Shoshawna Rainwater and Rachel Coady discuss the complexities of moving a loved one with dementia. They explore the emotional significance of home, the challenges of aging in place, and the signs that indicate it may be time to consider a move. They discuss understanding the unique needs of dementia patients and the impact of caregiving on family members, the reasons families consider moving their loved ones, the financial implications of different care settings, and the importance of choosing the right environment for successful adaptation. The conversation emphasizes the emotional challenges caregivers face and the need for a supportive mindset during the transition process.

Takeaways

• Moving for a person with dementia is uniquely challenging.
• Home represents safety and familiarity, which is crucial for dementia patients.
• The emotional attachment to home can complicate the moving process.
• Dementia can rob individuals of autonomy and agency.
• Recognizing when a move is necessary requires careful consideration of symptoms.
• Safety concerns often prompt families to consider relocation.
• The experience of moving is a sensory one, impacting comfort and familiarity.
• Each stage of dementia presents unique challenges for living arrangements.
• Support systems can help prolong the time a person can stay at home.
• Planning a move involves weighing the benefits of staying versus relocating. Caregiver health can impact the decision to move a loved one.
• Relocation is often prompted by the inability to meet care needs.
• The cost of care can escalate quickly, making relocation necessary.
• Families may feel pressure from others to make a move.
• Understanding the unique needs of the person with dementia is crucial.
• Different care settings offer varying levels of support for dementia patients.
• Independent living may not provide enough support for those with cognitive decline.
• Memory care units are designed to accommodate the needs of dementia patients.
• Financial planning is essential when considering care options.
• Caregivers should focus on the potential for improved quality of life. 

Transcript

Shoshawna Rainwater (00:04)

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

Rachel Coady (00:19)

And I'm Rachel Coady, a professional certified coach as well as a daughter of a person who had dementia and served as the primary caregiver.

Shoshawna Rainwater (00:28)

Listeners, this is going to be part one of two episodes that we'll be doing around the idea of planning a move for a person with dementia. In today's episode, we're going to talk about the moving experience and discuss why it's uniquely challenging. It could be said that moving for any one of us is a challenging and often stressful event, but when there are cognitive challenges or a dementia diagnosis involved.

So today we'll be discussing and talking about things to plan for and prepare for as we move a person with dementia. So let's get started. Hi, Rachel.

Rachel Coady (00:59)

Hi Shoshawna, how are you doing today?

Shoshawna Rainwater (01:01)

I'm doing well. I was thinking a lot about this episode, but also just this topic of moving in dementia. And I'm realizing it is such a big and often challenging milestone in the disease experience.

Rachel Coady (01:20)

Yeah, I think home is a big deal and as our minds are changing, our brains are changing, the familiarity of things is becoming challenged. And home is for all of us, kind of our base place.

Shoshawna Rainwater (01:37)

Yeah.

Rachel Coady (01:38)

Hopefully it's a place we are really familiar with. It feels like a safe place or a sanctuary for a lot of people. So the idea of moving to a new place- moving is challenging period, for all of us, but moving when you have less cognitive strength than you used to can feel like a really big, scary move towards uncertainty, I think, for a lot of people.

Shoshawna Rainwater (02:10)

Yeah, you know, I've been going through boxes of mementos recently, and I came across a couple of pieces of–I'm not going to call it art–pieces of drawings that I did and the date stamp on the back of them has my name and my age. So one of them was done in 1979 and one was done in 1978. So this is when I was six and seven years old. And it's construction paper and crayons and drawn trees and a home. And each one of these drawings had to do with home. And one of them I titled “Home Sweet Home.” Not an original term, but that was one of them. And then the other one was “East or West Home is Best.”

And I was six or seven years old. These were not original ideas that I had, but somewhere early on in my life and in most of our lives, we recognize that there's really something special about home. And then this additional layer, I think of growing up and living in the United States where private home ownership gets held up as one of the symbols of successful adulthood.  And so we spend a lot of our lives thinking about private home ownership and becoming a homeowner. What does that involve and entail? And it involves, I think, a lot of emotion. 

Rachel Coady (03:37)

I agree and I think if you're lucky, you are in a place as a young child in your childhood that feels safe, that feels familiar, that feels partially yours. And in a disease that takes you back to core memories often, your core memories are really formed during those home years where you're in a safe place, you're surrounded by people hopefully who are loving and caring and supportive.

And you grow in that space. And I think it's a really important security for a lot of us is to have a place that is quote unquote “ours” to return to and spend time and create. It's like a nest, you know? And so for that to start to be challenged or change when it becomes time for someone to move, it is very complicated. 

Shoshawna Rainwater (04:30)

You're also reminding me of this challenge that we can experience in dementia where our person perseverates or focuses on this idea of going home. And what we've discovered is that people are not always actually articulating a specific place, but rather they are likely identifying a feeling of ease and comfort and acceptance and love. And part of the reason we know that they may not be articulated in a particular place is that some families have told me that their loved one is focused on getting back home. And so the family does everything they can to coordinate an experience for the person to get back home and the person doesn't recognize home as home. 

Rachel Coady (05:16)

Correct. Yeah, we had, we had that experience. 

Shoshawna Rainwater (05:19)

With your mom, yeah.  

Rachel Coady (05:20) 

It was absolutely a feeling. And for her, she grew up in a big family. And so that feeling was about having everybody else at home, too. She was looking for her parents. She was looking for all of her brothers and sisters. She was waiting for them to come pick her up because that sound she would say, “I grew up in a circus and everyone was around me and now it's all quiet here.”   So that feeling was about having the love and the connection and the meals and the sounds of a full big family with her.

Shoshawna Rainwater (05:49)

Yeah. I think it's also for many people, the setting that allows for optimal privacy and autonomy, which we've talked about in this podcast as ideals in America that are held up as sort of what we should be aiming for as our highest values. And you've heard me talk about how in the context of dementia, that's very complicated and difficult because dementia tends to rob people of the ability to have complete autonomy and agency. It's one of the hallmarks of the disease. And so one of the things our private home settings do is give people alone time and freedom to carve out what we want our day to look like. And that changes when we don't live in our own setting and we're moving to a setting where we're dependent on sort of the cadences and rhythms and schedules of whoever is the organizing principle around the residents that we're moving into. Schedules happen on staff's time, not necessarily on our time as a resident. And that can be really hard, too. 

Rachel Coady (07:03)

Yeah.

Shoshawna Rainwater (07:03)

So we're naming this to set the stage for understanding better why a move is a big deal. Never mind that moving is generally an experience that just has a ton of moving parts. It's a detailed experience that is really depleting for even those of us who aren't experiencing cognitive decline. 

Rachel Coady (07:28)

It's dawning on me as you're saying this that home is a really sensory experience. And so, you know what your home–whether it's the one you're sitting in right now or the one that you want to be in someday–you know what home sounds like and smells like and feels like and looks like that's all in us. So when we talk about the loved one with dementia not being able to return to the home that they say they want to go to, it is actually all the senses of that, that place that feels so right to them. And then when you talk about moving this person with cognitive challenges to a new place, there are new sounds, there are new smells, there are new rituals, there are new people, all things that really interrupt the sense that you're in your home. And we found that to be pretty disruptive and challenging when my mom decided to move.

Shoshawna Rainwater (08:26)

So if living in our homes or whatever it is that we've defined as our home, that private home setting, whether it's been an apartment or a private home or a condominium, if that is where we want to stay, why is it that relocation or having to move out of that private home setting becomes the norm with dementia progression?   What is it about a private home setting that makes it difficult? 

I think one of the biggest challenges is that most of our private home settings are not designed with aging in place in mind. A good occupational therapist is the professional that could really walk us through some of these nuances of why it gets difficult to live in a private home setting.  There are stairs. It might be on a busy street, which is a challenge if a person begins leaving the home and wanting to explore their neighborhood and yet they're not familiar with it. 

There are basic household items that can easily become hazards. Things like a stove or a microwave, if foil is put in it, it becomes a fire hazard. Just a lot of things that, unless you're looking at the private home setting with that lens of safety, we don't realize those private home settings are really designed for autonomy. And they're designed for people with full cognitive function.

Rachel Coady (09:56 )

Yeah. My mom, as she aged, decided to live in a retirement community. This is before she had a diagnosis and was sick. That retirement community was for 55 and older and it allowed her to have an independent home in a neighborhood. There were like HOA fees and there were some landscaping protocols and stuff. But as she was there longer and longer, she needed to have some more help with running that household, even though it was a more simpler home maybe. So there was landscaping help, there was a cleaning service that we would have sometimes, there was someone who would come and kind of winterize the house. And those are really normal things to get assistance with. But what we realized when we went on this journey and we started to notice more changes, is that just running the household in a way that she had done for the better part of her adulthood was now challenging. 

And so it wasn't even that we got so far as there being like a really specific scary moment or hazard or fire. It was that we could sense her overwhelm in doing the normal annual activities of being a homeowner. And our idea was, let's make this simpler. Let's see where we could move to next that takes care of more and more things, or has someone available if the wifi is not working, or has someone that's there if you can't get the TV to turn on correctly or whatever. So it was really almost like an administrative thing. 

Our goal was like, how do we make her life have less stress and confusion in it and just have less things to worry about? And I have a lot of elders who are cognitively able that have made that choice to just live in an environment where someone cooks for you or, you know, yeah, there's events and outings where other people drive for you or take you to the grocery store. There's a lot of benefits as we age to look for places that can make that easier. But to your point, a lot of those facilities or neighborhoods or communities are designed for aging in place. They're designed to support you as you age versus living independently.

Music transition

Rachel Coady (12:10)

When we're thinking about the idea of needing help move this loved one, changes are happening, what are some of the factors that you think of or that you've heard through your experience around the symptoms of dementia and knowing that it might be time to consider a move?

Shoshawna Rainwater (12:30)

So, in a world as complex and as nuanced as ours, the answer, especially in this dementia landscape, is always going to be, it depends. And it depends on the stage that a person is in in their dementia experience. So you can go back and listen to the three episodes we've done on the different stages of dementia and know that each stage presents and shows up really as its own unique disease. It's mild is very different from moderate and moderate is very different from end-stage. So part of what gets us thinking about the need for our person to move has to do with what stage they're in. And I will say in my experience, many people who are living with mild cognitive impairment–so have not yet moved into dementia diagnosis or the earlier parts of dementia, but are sort of pre-dementia diagnosis–many people with MCI or mild cognitive impairment can live in a private home setting successfully.  And so can people who are in the early stages of early stage. And they can usually do it if symptoms are mild, kind of quiet, and there's ample support. Meaning light touch points, enough touch points by either hired help or family or friends to help keep things simmering along pretty well.

So remember that some of the losses in the early stages have to do with IADLs, so Instrumental Activities of Daily Living. Those kinds of things like someone taking you to an appointment, hiring some housekeeping, hiring some yard work, those kinds of pieces can be done and hired in for. And that can help prolong or kind of elongate the amount of time a person with a dementia diagnosis can stay at home successfully. And then more supports can hopefully, if they're affordable, can be folded in as someone moves through early stage.

When I start to get worried is when a person is moving into mid-stage. And that creates more complexity with a plan to live at home independently, but even for those who are living with another person who is serving as their caregiver. A person who is moving into mid-stage dementia is likely beginning to experience losses within the realm of what we call Activities of Daily Living–so those things that we do to care for our own bodies; that becomes overwhelming, nevermind all the other things about managing a household that are likely lost by the time we've moved into mid-stage. So there's a lot of support needed. 

And then the other piece that can make staying at home in mid-stage difficult are what we've called the “neuropsychiatric”  or the behavioral symptoms that tend to be most present by mid-stage of dementia–so things like hallucinations, delusions, agitation, not recognizing familiar people. So this can be challenging in a private home setting when someone shows up to provide support and care and the person says, “You don't belong here, I don't recognize you. Go away.” 

Rachel Coady (16:09)

Mm-hmm.

Shoshawna Rainwater (16:10)

And then the other thing that we know can happen in mid-stage are changes in our biorhythm. So meaning that we may have significant nighttime wakefulness, including behaviors like trying to leave the home. And that can happen day or night actually, but it just tends to be, if somebody leaves during the daytime, it tends to be more noticeable by some people.  You know, there is a neighbor that notices or someone in the house notices; but someone who's awake at night needs to be watched and monitored to make sure that they're safe and they're not leaving the home. And that becomes very difficult, either if they're living there by themselves or if there's family who's living with them and trying to sleep at night and get restorative rest so they can get up the next day and be a caregiver.

Rachel Coady (17:03)

I think one of the hard things about moving in this disease  is knowing when. 

Shoshawna Rainwater (17:09)

Yeah.

Rachel Coady (17:10)

SoI, I’m seeing some of these symptoms. Does that mean we do it now? Is it better to keep them here for a while and then do it when they really need it? It's expensive to move. It's expensive to move to a lot of facilities. So, when you work with families, how do you determine what to be thinking about when you think you're getting close to needing to do a move?

Shoshawna Rainwater (17:30)

Yeah, I have a lot of humility around the fact that I don't have a crystal ball and I cannot tell people exactly when the right time is, but I can weigh in on helping them understand benefits of staying and benefits of moving. And each family system has sort of their own level of risk tolerance and also there are some real practical challenges that need to be factored in when it comes to the decision of whether to try to maintain someone at home for longer versus a move to another setting. 

So let me first name the common reasons people end up feeling like they need to move their person. First and foremost is safety. And sometimes a warning shot gets fired where a family member might notice that a safety issue is at hand. They're visiting and they notice that something got left on the stove and so they can intervene. So sometimes there's a heads up that there's a safety issue. And sometimes the safety issue is not recognized until we're in sort of a full-blown crisis. But sometimes we get these little warning shots that things are not going very well- things like leaving an iron on anything that would cause a fire is potentially a big reason that people begin to think staying at home is no longer safe or possible.

Because our audience as listeners are primarily, I believe, family caregivers, one of the reasons that people end up needing to move their person with dementia is because the impact of trying to manage the needs of maintaining their person with dementia at home begins to outbalance the adult child or the person who's most involved, their ability to maintain balance in any other part of their life.  So if you can't keep up with your work and your family obligations, this is where adult children in particular begin to think like, “how much longer are we gonna be able to do this?” Nevermind that there are probably some safety issues at play. 

Another reason that people begin to think it's time for their person to move is because they can't keep up with the care that that person needs. So all of those IADLs and ADL activities, it's a lot to keep up on. And so if the person is beginning to really struggle with getting their needs met throughout the day, that's another reason. Sometimes the caregiver's health is negatively impacted or affected by the role and or a cohabitating elder spouse has a sudden change in their health and that then creates a need for the person with dementia to have to move. I'd say that's a pretty common one. 

Sometimes primary caregivers are hearing other family or friends or concerned others say “it's time to move. We're seeing it even if you can't see it.”  And then I will say moving to a care setting is generally very expensive, particularly in this country, c aregiving is not covered except in pretty unique situations. And we will talk about some of those unique situations that most of us don't qualify for, at least for a while. We'll talk about that in part two of this episode. But something happens in the home setting where if you need smaller amounts of support, it's more affordable than moving. But there's a tipping point where hiring and support for a certain needed amount of hours in a day actually becomes the most expensive plan.

Rachel Coady (21:24)

Hmm.

Shoshawna Rainwater (21:25)

Even like twice as much as moving someone to a care setting. Once you “need sort of 24-7 caregiving support, it quickly becomes the most expensive. And so that's often too families like, we just can't afford that. We can't afford $24,000 a month in caregiving support. 

Rachel Coady (21:38) 

Yeah.

Shoshawna Rainwater (21:40)

And then I would say one of the last reasons is that the person with dementia doesn't recognize the caregiver or family or home anymore. 

Rachel Coady (21:49)

Mm.

Shoshawna Rainwater (21:50)

And so families are often like, “why are we working so hard to maintain the setting when they don't even recognize it as their setting?”  

So I would say those are some of the main considerations as to why people begin to think staying in the prior setting is no longer gonna be feasible. And then I think it's a conversation about can we fold in enough supports to help prolong or keep this person as safe as we need them to be in their home setting? And sometimes we can buy ourselves a bit more time in supporting a home setting caregiving situation that way.

But oftentimes what has happened is that the experience of the person with dementia living at home it engulfs the lives of those around them and becomes unsafe enough that families feel like it's time.

Music transition

Rachel Coady (22:56)

Now that we know some of the kind of factors that can lead to believing it's time for a move, what are the things to be considering in where to move them next?

Shoshawna Rainwater (23:08)

Yeah, great question. So part of my recommendations are formed by experience of many, many years of watching these moves unfold, paying close attention and being really interested in the process for families.  What makes a move go well and what makes a move not go as well? Again, the stage of the person where they're at in their disease trajectory matters; it helps inform us about what type of setting would be most appropriate. Part of how I think about this and talk with families about this is actually based on two really incredible books by two women, Lori White and Beth Spencer. And we'll put those in the show notes. And the titles are Moving a Relative with Memory Loss. And the other book is Moving a Relative and Other Transitions in Dementia Care.

So this question around who's going to be most successful in what type of setting, again, really depends on where they are in their disease experience. So for people who have mild cognitive impairment or early stage dementia, there can be success with a move to an assisted living facility and perhaps, maybe, depending on how mild their symptoms are, maybe an independent living setting. But I generally tend to think of independent living as a pretty hands off kind of setting that does not have enough supports built in for people experiencing cognitive decline. Sometimes people might move their person to independent living and then hire in additional help if that's affordable. But generally, independent living is really for people who know what their needs are and can initiate their needs and get their needs met. And the challenge with dementia is with disease progression, it robs us of our ability to know what our needs are and how to get those met.

So independent living is generally a setting where people are pretty spry and pretty active and they are getting meals, maybe one to two meals a day provided to them, but they can generally cook and do other things in their own apartment setting. And there's transportation generally provided and in some settings there's also housekeeping. So those are things that really attend to those needs around IADL.  Meals are made for us, we get to where we're going, provided by transportation by somebody else, some housekeeping once a week, those kinds of things. So it's pretty hands off. But for many people, it's better than a private home setting, because it does have those built-in supports. 

Rachel Coady (26:11)

Mm-hmm.

Shoshawna Rainwater (26:12)

And assisted living I think of is a few steps beyond that in terms of what they support and provide. They provide more support for those IADLs and they're also designed, most of them, to provide some support for those activities of daily living or the ADLs–showering, dressing, those activities that we're doing for our own bodies.

But the challenge for me that I see in assisted living and people with dementia is that it still is a setting that has a lot of need for people to be autonomous. And they need to be able to call for help and support. So they have to know when they need help and support and then they have to sustain the, you know, anywhere from 15 to 30 minute wait for a staff person to show up. So there's a lot of needs in the brain of a person who's moving out of an early stage that I don't think get met as well in an assisted living facility. And assisted living facilities also tend to have expectations for how people should act. 

Rachel Coady (27:22)

Mm.

Shoshawna Rainwater (27:21)

And when we talk about some of the behavioral changes that are really normal in dementia, I'm not always convinced that assisted living facilities are trained in or good at responding to the needs of people with changing brains. Not to mention there's a little bit of, I've noticed a little bit of ageism from other older adults. I should say like cognitive ageism or cognitivism- 

Rachel Coady (27:48)

Yeah.

Shoshawna Rainwater (27:49)

Where they get really kind of judgy around people who are not behaving the way they think people in the milieu should act.

Rachel Coady (27:55)

Mm-hmm. 

Shoshawna Rainwater (27:56)

So I think what often happens then as people are leaving mild cognitive impairment and early stage behaviors and nighttime wakefulness and/or also a desire to explore–people call it “exit seeking”--but really we're talking about humans having a really strong need to explore their environment and the co-occurring challenge of lack of safety awareness. And so the setting that can provide the most support for people in that stage, tends to be a memory care unit. Because it's the one setting where those kinds of needs and behaviors, if you will, are just pretty normal, accepted, and accommodated.

And it's the setting where staff also are supposed to, I say “supposed to,” have specific training in responding to the needs of people with dementia, which we know are different than those who are in quote, “neurotypical” brains. This to me is why people typically end up by mid-stage needing to be in a memory care setting because it's the one setting that can kind of meet those unique needs. And also it's because we haven't done a great job as a society of building out other options for them.

Rachel Coady (29:26)

Yeah, I remember when we were working with you, we had a really strong sense of where our mom would be successful. We knew her personality, we knew behaviors, we knew the things that she would look forward to and enjoy. And we looked at a lot of facilities. We looked at senior homes where in Oregon, I think up to like five people live in a home together with a caretaker. We looked at memory care units.  We looked for a while at her moving in with me before she was in mid-stage. 

And I think that's the one good thing about caretakers. We know everybody's disease journey is different. And so as caretakers, you have to kind of think about what will help this person be most successful, what environment.  And what we found, even looking in one city at different facilities, is that they were really different. They were called the same thing, but the things they offered, the energy of the staff, the environment of the building, they were all different. And so I think it's so important for us when we were thinking about the move for our mom is to really consider what was gonna be successful for her kind of emotionally and socially and physically safe.

And to interview and look in these different environments and try to figure out what the right fit could be for her as her disease progression occurred. I know you don't ideally don't want to move a lot, so you're really trying to find the right place for this person. 

Shoshawna Rainwater (31:01)

Yeah.

Rachel Coady (31:02)

What are some things for people who are looking at these different environments or trying to figure out maybe the potential move- what are some things you feel like that they should be asking for or thinking about, in like a rough area? We can put a more robust list on our website for kind of questions and things to consider, because I know that's a big question, but any guidance on the ways to prepare for looking at facilities and what you want to ask or think about?

Shoshawna Rainwater (31:29)

Yeah, when we're talking about the move for a person with cognitive decline or dementia, I think one of the most important questions we can be asking is, does your setting accept and how do you care for people with memory loss? And a memory care facility, that's gonna be a silly question for them because that is the population they serve.  But I think it's a worthwhile question, particularly if you're asking or thinking about moving your person to independent living or an adult care home. Get really curious about the monthly rate. And does that, how does the rate change as my person's needs increase? 

Rachel Coady (32:09)

Great question.

Shoshawna Rainwater (32:10)

Because sure as heck, you're going to pay more when needs increase. 

Rachel Coady (32:14)

Mm-hmm.

Shoshawna Rainwater (32:15)

Facilities, I don't know how forthcoming they are about those pay structures. So ask that question ahead of time. And then there are specific questions related to how are we going to pay for this that have to do with whether or not your person has a long-term care insurance policy.  And I don't mean do they have Medicare? Medicare does not cover-

Rachel Coady (32:40)

It's an actual insurance policy.

Shoshawna Rainwater (23:42)

It's an actual separate insurance policy. Most people don't have, some do. What happens when a resident, “if a resident is unable to privately afford to live here anymore, do you have a Medicaid contract that allows people to stay here while enrolled in Medicaid?”

Medicaid is the way that much of long-term care is funded once someone has run completely out of funds. But it's a question I think families need to be asking is what happens to your residents when and if and as funds run out to pay privately?  Because care is very expensive. 

Rachel Coady (33:23)

Honestly. And the financial models for how you buy-in or what you're moving is, they're different in almost every place. So it is really important when you're visiting places to look at their financial model, what it includes, what the additional cost could be as the care needs become greater. And then to really sit and think about the financial forecast because one of the things we know about this disease is it can be a long journey. And you want to set yourself and your loved one up for hopefully one move to a place where they can age there and continue their journey there. So, yeah, the financial piece cannot be overstated when you're thinking about the move, really looking at those costs and how that works for your family is a big deal.

Shoshawna Rainwater (34:09)

Yeah. 

Music transition

Rachel Coady (34:20)

So one of the things that was true in our journey as a caregiver was looking at the places where we were potentially going to help her move. I felt a lot of loss and she felt lost about giving up her independence, kind of what we started talking in the episode about. And I felt this great responsibility and concern about how to make her home as successful as possible for her; that this was a really big milestone and pivot moment for her. And what I didn't do as well as I could ever or hindsight could have done better was to think of this as the move to help my mom have as much success as possible for her future. And that there was a reframe I could have done to really think of this as a powerful new beginning for her next chapter and where she was heading. 

So it's a big responsibility to choose the next space your person is going to move to and it's not a light decision. It's one hopefully you can incorporate your team on.  And that this can be a more successful place than the place that they're leaving, even if nobody's feeling that yet. That was our great hope for my mom. It's a big decision for families to think about and it's not easy, but I really do feel like it can be a moment to look at what could be ahead, what could be more successful and what could become easier for them. And, and like we said, a move is hard either way, right? But this can be a bettering of quality of life for people who need that extra support.

Shoshawna Rainwater (35:55)

I agree and I think one of the things that most people don't know is where things are heading. Meaning they don't understand what's coming with disease progression, which is, I would say, 90% of why you and I wanted to do this podcast is to help families better understand what is likely coming. If you don't understand what the disease of dementia holds and what it what progression looks like and what's most common, you don't know why memory care would actually be a better setting for your person. My parent lives in memory care and we chose it because this is a person who began having a lot of nighttime wakefulness and living in a private home setting, that became too hard for the people living with her. And we wanted her to have opportunities for connection and socialization with a deeper bench of people, right? And so now, if my parent is up in the middle of the night and wants to go down and have ice cream in the middle of the night, I'm not having to wake up and say to her, “what are you doing? I'm so tired,” I have to get up the next morning and take care, do a job and take care of you.”  She gets to be herself.  She gets to live in the brain that she has and be her best self. 

Rachel Coady (37:20)

Yeah, beautifully said.

Shoshawna Rainwater (37:22)

And so I know that there are significant feelings of dread. That's probably the most prominent feeling we feel as family or as people who care about a person with dementia. Around this idea of a move, we feel dread.

And I want to say, as we close up today's episode and we pick up this conversation and the next one, most people with cognitive changes and dementia adjust and adapt to their next setting. And it's stunning to those of us who are like “no way will she ever be happy anywhere but in her own home.”  

Rachel Coady (37:54)

Yeah.

Shoshawna Rainwater (37:55)

People surprise me over and over and over. Not in every case; but even people with dementia have a remarkable ability to adapt. It just doesn't look like sort of the neurotypical adaptation, but man, they're good at assimilating to new things in these new settings.

Rachel Coady (38:12)

Yeah, they can grow into new spaces. 

Shoshawna Rainwater (38:15)

I'm just naming that there's something in us as humans that can adapt to new settings, no matter our cognitive function. We're a remarkable species that way.

Rachel Coady (38:27)

Today we started the discussion around the challenges and changes of moving for a person with dementia. This was episode one of two. We talked about the importances of home, why moving in dementia can be so challenging, what safe and successful living spaces can look like for your loved ones, and some tools around visiting and considering the next place where they could move, as well as some inputs on how to help make this decision.

Shoshawna Rainwater (38:52)

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

We'll be back in a few weeks to cover the second half of the moving dilemma in dementia conversation. And we'll be talking about the actual move day and how to help it go better. Thank you for all that you're doing and thanks so much for listening.

Rachel Coady  (39:31)

You can always reach out to us here at Hope Floats with your questions or with topics you'd like us to discuss on the podcast. We're here if you want to share your experiences, and let us know what could help you navigate this journey. We want to support you. 

Shoshawna Rainwater  (39:44)

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

Rachel Coady  (40:03)

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