Navigating Moving in Dementia pt 2.

In this episode of Hope Floats, hosts Shoshawna Rainwater and Rachel Coady discuss the complexities of moving a loved one with dementia into a care facility. They explore the emotional and logistical challenges caregivers face, including financial considerations, legal decision-making, and the importance of mindset on move day. The conversation emphasizes the need for careful planning, consultation with professionals, and the emotional support required for both caregivers and those living with dementia.They emphasize the importance of clear communication, emotional reassurance, and the use of comfort stories to ease the transition. The discussion also covers the timing and delivery of difficult news, strategies for a smooth move day, and the critical need for self-care for caregivers after such a significant event.

Takeaways:

• Key things to do before the move- consult with professionals, consider finances now and moving forward, make sure your paperwork is as complete as possible. 
• Consult with a financial advisor and elder law attorney.
• Most care is funded through private pay or out of pocket.
• Long-term care insurance can be complex and difficult to access.
• Legal decision-making for moving a person with dementia can be complicated.
• Initial visits to care facilities should be done without the person with dementia.
• Caregivers often feel dread and guilt about moving their loved ones.
• It's normal for individuals with dementia to experience confusion after a move.
• Caregivers should prepare for emotional reactions from their loved ones.
• Keep communication about the move simple and confident. Practice clear communication to ease understanding and involve trusted individuals in delivering difficult news.
• Emotional reassurance is key in difficult conversations.
• Use comfort stories to facilitate transitions.
• Timing and delivery of news matter greatly.
• Smooth transitions require planning and support and creating a familiar environment in the new setting helps.
• Post-move care is essential for both the patient and caregiver.

Transcript

Shoshawna Rainwater (00:05)

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

Rachel Coady (00:20)

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

Shoshawna Rainwater (00:27)

Today's episode is part two of two around the challenges of moving a person with dementia.

Rachel Coady (00:34)

In episode one, we talked about anticipating the move, thinking ahead about the future moves and what the person's changing needs might be, how to determine the best setting based on their current dementia trajectory, and why memory care might be the best option for a person's changing needs when home care has become too much due to cost, management difficulty, safety concerns, and even night wakefulness. 

And I think particular to nighttime wakefulness, it can be really exhausting for home caregivers and quite challenging to manage night wakefulness around the clock. We also know that's something that can be difficult to manage with medications.

So if you didn't have a chance to listen to the first episode, we recommend that you go back and listen to that, as well.

There were two things that we talked about in the last episode that we wanted to follow up on. First Shoshawna, let's talk a little bit about how care in a move gets paid for.

Shoshawna Rainwater (01:33)

Yeah, thanks Rachel. This is a big concern and issue for a lot of folks. It's one thing to come to the realization that maintaining a person in the home setting or their prior setting is becoming increasingly difficult and that a move to a more memory-focused setting or a place that can really focus on the needs of a person with cognitive losses is what's needed. And then there's an additional important question about, “well okay, once we've made that decision, how do we pay for it?” 

One of the most important things that you can do is consult with a financial advisor and an elder law attorney. So elder law, that is the area of law, the specialty, that focuses and is most knowledgeable about these areas of need that come with caring for a person with dementia. So if and as you're looking for some legal counsel and legal support, my recommendation would be that you're looking for someone who practices elder law. And we have put a resource on the website about how to locate an elder law attorney.

Most care gets paid for by what we call private pay or out-of-pocket, which is exactly what it sounds like.  People use their personal savings and a lifetime of investments, their retirement plans, sale of assets or home equity to fund their long-term care needs or these monthly costs that come with living in a setting. So that's the primary way that care gets paid for.

Another way is through long-term care insurance, which is an insurance plan that is purchased well in advance, usually, of a serious illness diagnosis. So if the person you're caring for purchased a long-term care insurance plan years ago–usually, we're talking several to many years ago, those monies may be available, should be available. It was purchased with this thought that you would need it someday for placement needs or for care needs. This is the time then to investigate whether your person has a long-term care insurance policy. And if so, what are the coverage details and what are the waiting periods? So meaning, what does it take to activate the policy? When can you start using it? And is there a period of time where we have to pay out-of-pocket before those funds are available? And that really varies by policy. So you'll want to be in touch with the long-term care insurance policy specific to your person if they have one. Some people have a long-term care insurance policy, and I would say most people do not.

Rachel Coady (04:36)

And we had a unique case where we had one and it did not help us at all with the coverage of care because of the way the policy was structured. So it's a good policy to be familiar with whether you're facing a move or not. Know that policy, yeah.

Shoshawna Rainwater (04:50)

Unfortunately, I hear those stories too, Rachel. And even for those policies that do exist, getting the policy to be sprung or activated can be very complex. It's as if the policy is designed to make it very difficult to access, unfortunately. 

Rachel Coady (05:06)

Yeah.

Shoshawna Rainwater (05:07)

Sometimes in unique cases, so if someone has served in the armed forces, sometimes veterans benefits will provide some coverage for long-term care. So if your person has served in the armed forces, you'll want to be in touch with the VA to see whether or not they have a pension or a survivor pension that might be utilized to pay towards the cost of long-term care. 

And then the other primary way that care gets paid for is through a government program called Medicaid. It's really important for us to understand that there are two primary programs for older adults in America. One is called Medicare, and that does not pay for long-term care. And Medicaid is a program funded by federal and state dollars that is designed for low-income individuals and families. So low-income meaning folks have really spent all of their monies, all of their resources before they are eligible for that. So that is another reason to be working with elder law is to inquire about whether or not your person would be eligible for Medicaid funding.

So those are the main ways that in our country care gets paid for.

Rachel Coady (06:29)

And then when it feels like it might be time to make a move for our listeners, who actually can make the legal decision to move a person to a care setting?

Shoshawna Rainwater (06:40)

So this is another really great question, Rachel. And this is also where it's essential to consult an elder law attorney. We always want to start with the individual making the decision. That begins to look different and is markedly different when we have a person living with a dementia diagnosis because their cognitive capacity and ability to understand the decisions that lie ahead–and why they're needed–is impacted by the disease.  And a doctor or a neurologist or a geriatric specialist can help evaluate whether a person still has that decision-making capacity. 

So ideally, a person with dementia would have proactively established what's called a Durable Power of Attorney for Health Care–what's also called a Health Care Advance Directive–while they still had full cognitive capacity to do so. So before significant brain changes had set in. And then these documents assign and permit a person to make decisions on that person's behalf. So it creates what we call a “Designated Legal Representative.” Again, these are good things to be consulting with an elder law attorney around. That form and that designation can be called different things in different states. So you also will hear it being referred to as a “medical POA” or “Power of Attorney” or a “healthcare proxy.”  So you can see just in this quick descriptor how complicated things can feel pretty quickly. 

Without that durable power of attorney for healthcare already established, there is then the possibility that someone will have to have a court-appointed legal representative, what's called a “guardian” or in some states is also combined with what's called “conservatorship.” And that is a legal designation made by a court that says who can make decisions for this person. And that tends to be a lengthy process and can be quite expensive, as well. 

I have also seen situations where the legal “next of kin” can then step in and make decisions about a person being signed into a facility. Every state has their own statute around legal next of kin and who can make decisions if a person cannot and it typically flows from spouse or marital partner to adult children, majority of adult children, and then siblings and those kinds of things. So it has its own flow as to who gets to step in and make decisions.  As you can hear, these are really complex situations and consulting with elder law is best practice in these situations.

Music transition

Rachel Coady (09:51)

So moving forward to the second part of this moving conversation, I think today we really wanted to focus more on the mechanics of the actual move–the things probably to consider in the days leading up to the move, things to consider on the visit to the new places, and then how to manage the actual day of move itself for our loved one. 

Maybe for starters, when you know that you need to move someone or you're suspecting–and let's assume that we've got the legal permission or we're in that position to help make that decision–what are some things that our caregivers are considering? Or how involved is the person with dementia in this process? What are some things to think about in that visit that you hear from the people you support?

Shoshawna Rainwater (10:37)

Yeah, I think one of the biggest questions on people's minds is who goes and looks at these facilities? Is it me as the caregiver? Or am I actually partnering with my person experiencing brain changes to make these decisions together? And I've been with families who've done both. And part of what can be challenging about taking your person with cognitive changes with you to sort of vet and look at facilities is that the person with dementia may not have the ability to have insight into why a move is needed at all. If you haven't listened to the episode on anosognosia, please consider going back and doing so because the reality of our folks who are living with cognitive changes due to dementia is that part of the disease impact is that they are not able to have insight into their own needs. And that makes it really difficult then to tour places with a person who doesn't understand why they may need to move there. 

So I think one of the things families are wondering is, “well, as I'm getting ready to explore other options for this person, do they go with me?”  I would generally recommend that they do not at least initially go with you. And we'll get to that in a second to talk about that. I would recommend that you as the primary caregiver or people who know this person best, that you do the initial legwork and really go and research the facilities that you want this person to potentially move to and not have the person with cognitive changes be part of that initial process.

Rachel Coady (12:20)

We did a pre-visit to places and then when we found ones that we thought would support our mom based on the changes she was experiencing and be the right fit for her, we took her back and actually using therapeutic fibbing, we assumed the position of it was our first time visiting. What that gave me as the primary caregiver was permission to really ask open, honest questions at my speed, around my curiosities with the caregiving facility. And my mom with her journey in dementia didn't have to kind of keep up with that conversation or get curious or be off put by any of the answers. It was a really good way for me to kind of filter that it was gonna be a potential for her and then to go back with her and kind of introduce it and reinforce the things that I knew would help her feel supported and more excited was a good way to go about it.

By going and screening a place before we took our mom to visit, we could have a hard financial conversation with the facility about costs and costs with increasing caregiving needs. And finances are an area that are really confusing for people with the cognitive changes, so we didn't show our mom any places that were out of her financial opportunity to live in. And better than that, when we did the visit with our mom, we did not have to have her sit through financially confusing conversations that might have kind of triggered or upset or added to the confusion of it.

 Shoshawna Rainwater (13:57)

That was really smart.   You kept your mom out of having to deal with sort of the minutiae and the details.

Rachel Coady (14:03)

Yeah, and the confusing parts that might have confused her, yeah.

Shoshawna Rainwater (14:07)

You can also ask yourself, how have they reacted to past difficult conversations or unwanted events? Like when you've told them, “hey, we've got to get ready and go to a doctor's appointment,” if you've had experiences where they've really pushed back or had strong reactions to hard or difficult things, then I think that's evidence that you may want to explore these initial steps around a move. Give yourself permission to do that without them and without their buy-in. 

There are a few advantages to bringing your person to visit a place before a move. You can feel somewhat that you are involving them in a significant life decision; that might make you as the caregiver feel better. I don't know that I think it provides a lot of comfort or advantage to the person with dementia, but it might make you feel like you're sort of democratizing and equalizing.  And it may help, then, alleviate some of your caregiver guilt. But again, I think it's

fairly risky to bring a person with you as your sort of vetting facilities, particularly if they have a strong negative reaction to a place.  And imagine that you really like it, you feel like it would be a really good match for them and their needs, And if they have a really strong reaction and say, “No, I'm never going there,” it puts you in a tough bind. 

Rachel Coady (15:42)

Mmm.

Shoshawna Rainwater (15:43)

Then you're in a position of having to override their really strongly stated wish to not go there, that feels really hard. And that can be a drawback to visiting with them before the move. It can also increase their levels of confusion and agitation both during and after the visit. And you may find yourself having to spend a significant amount of time and energy supporting them through some pretty significant emotions after the visit if it does go poorly.  

It's also really possible that the person with dementia may not remember visiting the setting at all.  So imagine if you took them beforehand and they had a good positive response and then later on you try to remind them, “well, we're moving to X, Y, or Z and you went and you had a great time” and they don't remember that, then that's disconcerting for everybody.

Rachel Coady (16:36)

Yeah.  What about going together to visit a facility after the decision to move has been made?

Shoshawna Rainwater (16:41)

I think that it's something that people feel compelled to do and it feels like they're trying to equalize the decision and bring their person into the fold on this big life change.  So if you decide to visit together after you've already made the decision about this is where this person's going to be moving, try to schedule the visit during their best time of day. So the person with dementia's best time of day.  So if you know that three o'clock p.m. is when they are at their worst, try to do it maybe in the late morning, right…

Rachel Coady (17:19)

Mm-hmm.

Shoshawna Rainwater (17:20)

…before the fatigue of the day has set in.  You'll definitely want to give the move-in coordinator and other folks a heads up that work at the facility so that they can create a welcoming space…

Rachel Coady (17:32)

Yes.

Shoshawna Rainwater (17:33)

… and create a positive tone. We want to keep the visit brief; so don't plan to stay for probably more than a half hour, 45 minutes would be my recommendation.  And try to plan the visit around a positive activity or a meal.

Rachel Coady (17:50)

Yeah. We found that most of the places that we wanted to visit wanted to create the most welcoming environment they could. So they asked ahead of time about joining us for a meal, they compensated a meal.  My mom was a social person, so they suggested we could come by and look at some of the activity spaces or classes that were going on. So, we curated the experience of visiting around experiences that our mom would value or hopefully feel more excited about. And they were all offerings that existed, but we just wanted her to be able to see and feel those in our short visit window.

Shoshawna Rainwater (18:27)

I'll say most people who are moving a person with dementia to a memory care setting do not do a visit with their person ahead of time. That's normal and that's okay. And I think it can feel difficult that you're not maybe what's needed to get their buy-in or to bring them into the fold of the decision.

Rachel Coady (18:50)

Mm.

Shoshawna Rainwater (18:51)

And I would say it's a very hard thing to sit with. And also it's a recognition that the person with dementia needs the people who care about them most to be making these good decisions on their behalf.

Rachel Coady (19:03)

Yeah, this is one of the really hard parts of this disease journey is knowing that you're doing the right thing for the person and trusting and believing in yourself as the caregiver to do that, while you're not able to fold in the person who will be making the move. 

Let's talk some more about that actual move day, the challenges and what are some strategies maybe we can offer to make this transition as smooth as possible for people.

Shoshawna Rainwater (19:34)

Let's talk for a moment about mindset. What are most people sort of thinking and feeling as they are preparing to tell their person with dementia about the move? I want to normalize that the primary feeling I hear people talk about is dread. It's very normal to feel dread about this experience. I would hope that caregivers can take a moment to really think about and self-acknowledge all the hard work that they've done that has led up to finding and securing a placement. So if you find yourself in this space of having gotten a place set up for your person to move to, you've done a tremendous body of work here. You've done a lot. 

I also want to make sure we also state that most people with dementia are not initiating or voluntarily moving themselves into memory care; that's not how this typically looks or works. And to your point, Rachel, it's one of the unique and hard things about this disease experience. This decision really rests with the legal decision makers for the person with dementia. 

Caregivers are often dealing with those feelings of dread, but they also feel grief and they may also be struggling with some guilt, particularly if there have been statements made in the past to the person with dementia about never moving them. I typically ask families who are thinking about or realizing that they're coming up to a point in the disease experience where they're going to have to move a person, I ask, “have there been promises vocalized or made in the family about never moving this person?”  Because if there have been promises made that we are about to break, then it is worth talking about that and giving people permission to self forgive.

Rachel Coady (21:34)

Mmm, beautiful.

Shoshawna Rainwater (21:36)

Some people are also worrying that they are about to move their person and potentially increase their confusion–the person with dementia's confusion–and maybe even accelerate their decline or speed up their worsening of their dementia.

Rachel Coady (21:53)

Mm-hmm.

Shoshawna Rainwater (21:55)

And this is not a totally unfounded worry because many people with dementia actually do experience more difficulties after they've moved because their brains are working so hard to make sense of all new things.

Rachel Coady (22:10)

Yes. 

Shoshawna Rainwater (22:11)

Did you notice that too?

Rachel Coady (22:14)

Absolutely.  I think there was definitely decline.  And for us, it felt like a combination of things. There was some depression for her move. She downsized. She had to move to a new place. She felt uncertain about being in an age where she needed caregiving at that level. And then everything was new. We talked about this in the last episode, but new sounds, new smells, new routines. That's cognitive load for all of us when we move.  And so when you have a brain that can't function at its highest capability and is actually suffering decline from this disease, that makes this a very heavy load. And it did increase. We saw increased decline in her move. But we also in time saw support that she really needed come through for her.  And I think in some ways, as she spent more time in the new home, in the new environment, that she felt some of the resource and the benefit–meals being cooked, new social outings, things that also were the benefits; but initially, it was a pretty confusing experience.

Shoshawna Rainwater (23:19)

Yeah, I think that's really normal. And what typically happens as I watch these moves unfold for families is that there is this decline, but the people generally sort of taper out with time as they adjust to their new setting.  So just knowing that, that there can be a change in function and a decline in abilities as the brain is really trying to make sense of all new things, that will likely happen and most people sort of level out over time. And it usually takes a little bit longer than we think it will. 

Rachel Coady (23:51)

Yeah, yeah.  There was also surprise for our mom in the new social connections that she made. And she found new friends and someone had told me that it was going to be beneficial to move her kind of sooner than later because she would have the ability to potentially make new connections with people while the disease hadn't progressed as much. So again, lots of things to consider when and where and how to move, but we did see her become adapted to that environment and to kind of live into that environment in ways that we were grateful for

Shoshawna Rainwater (24:28)

The other thing that's unfortunately part of a lot of people's reality is they receive criticism from others–whether that criticism is overt or sometimes the criticism is subtle from others. People can feel really judged for making this decision to move their person into care. 

Rachel Coady (24:46)

That's a really important point to make is there is a journey with caregivers of receiving wanted and unwanted feedback from the care circle or the family circle–especially when you're the frontline caregiver and the rest of the family isn't seeing the day-to-day. They all care about this person. They all want inputs on this person. And my experience was lucky in that my family was supportive of my judgment and decisions on what was the right thing for our mom. But I know that that can be a huge pain point and really hard for families that don't have alignment on the next best step for your loved one.

Music transition

Rachel Coady (25:36)

What are some directions or suggestions we might have for talking with the loved one with dementia about the actual move? Any wisdom to make that conversation easier?

Shoshawna Rainwater (25:50)

We want to keep the messaging around this short, simple, as well as consistent. So there are scripts that people use and can use. I've talked about the two resources that I really lean into heavily for this topic around moving and those are in the show notes–two books by two women, Spencer and White. And there are scripts that they offer in their books.   And I'll give you a sample of like a three-sentenced explanation for your person that you could offer. You could say, “The medical team that cares for you has made a reservation for you to stay at memory care at this particular place. They think it will be able to help you with your memory and other health needs, and we’ll be taking you there tomorrow,” or “we’ll be taking you there, fill in the blank. 

And saying it in a way that conveys caring, but also confidence. You're not coming at it from a place of like, (groans) even though that might be what you're feeling on the inside, but you try your best to say it with confidence and calm and concern and caring. And part of how you get good at doing that is that you're gonna practice it, right? That was not a long and lengthy explanation. That was just a few sentences worth, but it's worth practicing so that you can feel your body and your brain rehearsing and saying those words. 

Rachel Coady (27:28)

The benefit to that also is that it's really simple for a person with brain changes to understand. And the more we add on to sentences and add context and nuance and reasoning, the more confusing it gets to understand what you're doing.

Shoshawna Rainwater (27:45)

Yeah, and I think people with dementia can seem like very good arguers. They can sometimes have a lot of questions about the why, and that doesn't mean that we then respond with a lot of detail and information. You continue to use your very clear and consistent explanation. You do it in a calm and kind way. And one of the tools you can use is to respond to the emotions that they're feeling. So what are the feelings in what they're saying and stay out of the details of the content, right? So don't try to explain away “you know, six months ago, you got this diagnosis and we've seen it unravel and your mini mental status exam scores tanked.” You know, none of that matters. But you can say, “I know how hard this must be. I know how hard change can feel.”

Rachel Coady (28:42)

And I think that one of the key differences is that you're not being defensive, you're being assuring. And I think assurance, like you're saying, do what you need to do caregivers to come to this conversation in peace, with understanding, with confidence and steadfastness in the way that you're talking to this person, because that makes you as the receiver feel safe, feel like you can trust and understand what's happening and that everything's going to be okay. And that's really the feeling that needs to be in the spirit of this conversation, I think, for this big of a change for someone.

Shoshawna Rainwater (29:21)

I think that's brilliant because we've also talked about how people with dementia are emotional mirrors for us. Oftentimes we have this superpower of setting the tone and so yeah, being able to convey with reassurance “ I know this can be hard and I know we'll get through it and this is the next chapter.”

Rachel Coady (29:43)

Mmm.

Shoshawna Rainwater (29:44)

It's okay to tell a comfort story or a partial truth around the reason for the move. Sometimes people will blame the need for a move on a different health issue.  If your person has high levels of anosognosia–meaning they have not a lot of awareness or little awareness as to their brain is changing–it's okay to say, “this is where the medical team thinks you will do best and they can best manage that nagging knee injury issue you've had for years or that hip issue,” those kinds of things. It's okay to fold in those comfort stories here.

So people then often wonder like who, “well who's gonna tell them?” So the best person to tell them is often the person that the person with dementia might be most receptive to.

Rachel Coady (30:33)

Okay.

Shoshawna Rainwater (30:34)

… which can feel counterintuitive, because sometimes people are like, “well, shouldn't it just be the person that they despise the most?” 

Rachel Coady (30:41)

Give her the hard news

Shoshawna Rainwater (30:43)

We can just lump all the bad news together. But it tends to come best from a person that they have a good relationship for, so long as that person is delivering the news in the ways we just described. Sometimes families can very clearly tell you who the favorite adult child is. Oftentimes when I ask that question to families, “does mom have a favorite?” Everybody in the room's like, “ Oh yeah! Yeah, it's so and so.” That might be the person you want to have say that news. And that would be a real gift for that person to be willing to do that.

Rachel Coady (31:14)

One of the things that you also helped us understand was that when we anchored the need in something that made our mom feel a part of herself that she was proud of–for example, if we could put her in her maternal mindset–the decisions became something that she wanted to do the right thing as our mom on. And so saying, “the way we've been doing care and me supporting you is now really taking a toll on my family, my work, my health, and I need your help in making this move for kind of the betterment of you and I, and these are the things that will help us.” Or, you know, having a spouse say, “this is probably the best thing for us,” is that a good way to anchor the conversation for that person who's closest?

Shoshawna Rainwater (32:02)

Yeah, I think it's a great way to do it, to lean into whatever they're valuing or strongly value at that time. We used a comfort story with my mom, who's never been a person who's been like super autonomous, but in her recent years, she's really become a person who does not like to be bossed around, as most humans don't. So we leaned into the move to memory care as a way for her to have more autonomy. Because what was happening in the private home setting was everybody else was telling her, “we really need you to sleep at night, we need you to do…” you know, really trying to dictate her schedule so that the rest of us could remain sane and functional. And we pitched the move as a way for her, “if you want to be up at 2 a.m. and have a bowl of ice cream, you get to do that in this setting. Nobody gets to tell you what your schedule's gonna look like except you,” and that really appealed to her. 

By the way, that's a true statement in most memory care facilities. It should be. People get to live into their own biorhythms. So yeah, I think that's a good reason.  And then I also think, you mentioned something there, Rachel, about when a spouse is having to move their person with dementia into a setting, instead of attributing the need for the move to the brain changes in the person with dementia, we can blame it on the changing health needs of the spouse who is going to be remaining at home.

Rachel Coady (33:33)

Hmm.

Shoshawna Rainwater (33:34)

The need for the move is really more about their health and what they need versus putting it on the person with dementia.  

Sometimes someone outside the immediate family or the immediate circle of care–like a really beloved friend or a spiritual religious leader that's been important to this person–can be a good person to sit down with and break the news. And in some cases, medical professionals can be helpful here. Some doctors are willing to write out a prescription, something on paper that says, “Mrs. So-and-so, we care deeply about you and want the best for you. And it's because of your overall growing and changing health needs I've made a reservation for you at X,Y and Z facility.” 

Rachel Coady (34:23)

When you know that you're ready to tell them or have this conversation, kind of when are the best times or how do you figure out when to tell them this?

Shoshawna Rainwater (34:32)

Yeah, so think back to what is their best time of day, right? When are they gonna be most rested and most comfortable? And use the guideline around their past reactions to hard news or difficult things as your guide as to when you're gonna tell them what time of day and kind of under what circumstances. And that also helps you figure out how much of a heads up are we giving this person? 

So this is another thing that people feel a lot of dread around is “how much of a heads up do I owe my person with dementia?” And here's most people recommend is that we don't tell someone more than 24 to 48 hours before a move. Now that feels shocking to a lot of people when they hear that timeline and they think, “how could anybody possibly get ready for a move in 24 to 48 hours?” But we're not talking about a person who has the ability to do a lot of planning ahead…

Rachel Coady (35:26)

Yeah.

Shoshawna Rainwater (35:26)

… or what we call “anticipatory planning” for what's coming. And so the kindest thing is that we're working behind the scenes to get everything set up for this move. And then we use our best tools to tell them 24 to 48 hours ahead of time.

Rachel Coady (35:41)

Yeah, it's almost like treating it like it's a surprise vacation versus this long thing that they can then worry about packing for and where they're going. And you don't want to stir up the anxiety. You want to kind of just like say like this is, and “we're going to go do this and here's what we're doing.” Yeah

Shoshawna Rainwater (35:59)

Yeah, and based on how people have reacted to hard, difficult news in the past, this is also why some families decide not to tell someone until the day of the move.

Rachel Coady (36:08)

Yeah.

Shoshawna Rainwater (36:09)

I can understand why that happens because oftentimes giving someone even that 24 to 48 hour heads up, things do not go well. So again, you want to keep the message simple and consistent and deliver it in the calmest, most caring way that you can muster. Really work to avoid confrontation. That's never going to go well.

Rachel Coady (36:34)

Mm-hmm.

Shoshawna Rainwater (36:35)

and you'll both end up feeling pretty awful about it if you let yourself go into a conversation that gets really contentious, where you're demonstrably upset with your person. And then again, focus on validating the emotion they might be feeling rather than correcting the content of anything they're talking about. 

Rachel Coady (36:54)

Yeah.

Shoshawna Rainwater (36:55)

I also like the idea of what we call “pairing with pleasure.”  So for my mom, we actually paired a pleasurable event after we got her checked in. And my siblings and I were all there to kind of receive her in her new space and then said, “let's celebrate by going out to ice cream.” And that was like music to her ears. And she was able to go out. We enjoyed ice cream. And then she was in a good mood to be brought back.  And that actually, that kind of handover into her new setting went well, I think in part because we paired it with a pleasurable event. So you could pair it with a pleasurable lunch, their favorite activity

Rachel Coady (37:33)

I've had loved ones–and we did a version of this with our mom, too–xbut like go get planter boxes that would sit outside the window. Like go, go to the garden center and make the boxes and then take them there and then look at them through the window and kind of orient around that activity. If that's still an option for them. 

Shoshawna Rainwater (37:50)

That’s great.

Rachel Coady (37:51)

What are some things to think about on the actual move day? When we’ve had the conversation, say it's been 24 to 48 hours later, it's go time. What kinds of advice do we have for listeners on how to do that smoothly?

Shoshawna Rainwater (38:05)

Completing any paperwork that the facility needs you to complete, as much of that that you can do ahead of time will help save and conserve your energy for being present and supportive to the person with dementia who's moving. Again, time of day really matters so scheduling your person's move for their best time of day but make sure you're checking that with the staff's best time of day to receive a new resident.  Usually staff is doing what's called “change of shift”  in the mid afternoon–like between 2:30 and 3:00 is where it typically happens in a lot of settings. And that is a chaotic time for a lot of facilities. So really check with them ahead of time and try to find the best match between your person's best time of day and the staff and facilities best time of day. 

We talked about associating the move with a pleasant event. And then consider having an ace, a person that is supportive for you or for your person with dementia to come along so that it's more than the two of you, if that's available and possible for you. Someone who you know would just be setting a calm, caring tone, right? And then some of the hard pieces around the move get a bit more diffused when there's a third person to help carry it.

Rachel Coady (39:20)

And you have another person to just take the mic and take the lead when you need a break or a moment. You helped us a great deal when we were preparing for our move first to an independent living facility and later getting ready to move to memory care. And there were just a lot of things that I wasn't aware that I needed as a caregiver for those experiences.

But once again, caregivers listening, like you have a team—we always refer who's on your team? Think about who on your team could help in this journey. And one of the things I'm thinking about when we talk about this today is that–I'm gonna use the metaphor of a movie; There's all the things that happen on a movie set to make the movie possible, and then there's the movie we see. And you as the caregiver are like, the director, you're doing all the behind the scenes, you know the set, you know all the moves that need to happen. And what I think we want for our loved one is for them to feel like what you see in the movie–very smooth, very elegant transition. So one of my jobs and my family's jobs was to make all of this kind of happen for our mom in a way that she couldn't even see or have to witness it happening. And that looked like us packing up her room just the way that she wanted it to be. And then when we moved into the facility–which we did before she saw it–setting up her room exactly like it was in the old place. 

So you try to make the new environment feel as familiar as possible to the old environment they're moving from. It helps with confusion, helps them feel a sense of home. We were fortunate in the facility we moved our mom into, they even allowed us to paint her bedroom the color of her existing bedroom. So, ask about ways that you can create a more comfortable home environment and what the availability of the facilities are for you for that. There are moving companies now increasingly that specialize in moving elders. And we worked with a great company in the Portland area that actually came in and took pictures of where my mom had everything in her living space and her kitchen and in her existing bedroom. And then when they came in and moved her things and they took out those pictures and they set everything, even spices, right back up where they had been in the home before. It's a really helpful way to lower the confusion and make a home feel set up the way the person had chosen. So I think any way we can create familiarity in the new environment, we tried to do that. And Shoshawna, you helped us a lot and kind of trying to think through ways we could have more and more success there. 

The other thing is we downsized our mom in her moves. And because of the experience she was having with dementia, she didn't know that all the time; but things like my mom loved clothes and she had very large closets, but we did some thoughtful trimming of those wardrobes because she wasn't going to need as many choices and actually the amount of clothes became confusing as that part of her brain was changing. So we instead probably thinned out at first like a third in the first move. And then I would like winter some of her clothes for her and put them in boxes that just like we didn't need to put back out in spring. 

So, think of ways again, in the spirit of making things more familiar and more manageable for a changing brain, what are ways that we can kind of downsize, not taking everything away, because so many of our things are what help us feel comfortable and familiar, but look for ways that you can simplify the environment. And then keep those familiar items–picture books, books, maybe little containers or decorations that are meaningful and personal to them–a featured part in the new space so that they see those familiar pieces and have those. For us, that looked like family pictures, some kind of little art pieces that she loved that were around her. We put in flowers in the new house because that was kind of my mom's signature thing that she loves. There was always fresh flowers. I've had other people put out, like I said, those planter boxes out the window that they'll be able to see or a bird feeder so birds come and visit. 

But those little touches, anything you can do, and again, use your team and use services available to you to make all that happen without your parents seeing you box up or your loved ones seeing you box up everything and take things to Goodwill and move things. That will all cause confusion. My sister came, she took my mom out to get her nails done, they went to the beach for the day. And I was able to like really do a lot of the hustle and the downsizing without my mom having to witness and be confused by all of that. So just think of things that can make this as smooth as possible for you and your loved one and then ask for the help and support to get there. 

Music transition

Rachel Coady (44:26)

Once we get our loved ones safely to their new place and hopefully that the day's gone smoothly and you've had a kind of a pleasure experience for them in that new environment, what are things to think about after they move?

Shoshawna Rainwater (44:40)

There's a lot to think about after a move. And I think what to focus on immediately is, what are you going to do–as a person who's just been through probably one of the biggest milestones in the disease experience–how are you going to care for yourself and recover? My mom's move to memory care went as well as it could. It was orchestrated well. She was positive. She had a smooth transition. And I was very tearful. Not overtly. I did not want her to see that I was tearful, but I was pretty surprised at how engulfed in sort of grief and sadness around this new chapter as I was leaving her for the first time there in her new setting. 

And I was really depleted and exhausted, as I think my siblings were as well, who were just as participatory in the move experience from our mom. We were pretty exhausted for days.  You probably won't feel like doing much the day of the move, and that's OK. I would say if you can clear your schedule, let people who care about you know “I anticipate I'm gonna be pretty tuckered. 

Rachel Coady (45:54)

Yeah. Let your teams at work know, “Hey, I'm moving my loved one this week. It's a really big deal. I'm doing my best, but just so you're aware that's going on for me outside of work,” like be honest about this stuff with the people around you and let them support you in it. It's a big deal.

Shoshawna Rainwater (46:08)

It is a big deal. And if possible, not all of us have the ability to take a day off from work following a move. But if that's available to you, I would encourage that. Really give yourself the next day to just recenter yourself and acknowledge you've been through something significant. Because you're also going to be thinking about “how is my person adjusting?” It's really normal to get calls either from your person who's moved or from the facility staff saying, “she's curious about where you are, she wants to go home” or those are all normal things.

And I would say really attending to your own needs and you're also going to be being asked to still be participatory for your person who has just moved. And of course, our roles look different when someone has moved into memory care, but they're no less important. They just will look different.  You're going to be asked to do new things. You'll be connecting with staff around, they've got a new resident who's adjusting and so helping them understand the things that really soothe the person with dementia and the things that we know distress them and giving them the inside scoop on, “gosh, well, you know, mom really loves X, Y or Z; would it be possible to offer her that?” Or “let her know I'm coming just as soon as I'm able when I get off work,” those kinds of pieces.

Rachel Coady (47:36)

I think that piece you mentioned of, to the extent that you can, planning as the caregiver to have a moment of self-care reflection and you know, it would be great if that could look like a massage, you know, or a lunch out with friends or a close friend the next day or something. But if nothing else, when you get in your car after that move, put on a gentle song and sit there and affirm yourself. “I just did a very hard thing. I have done the right thing for my loved one. I have done my best for this person. I have been brave or courageous in making this move.  This is hard. This was hard.” You know, like acknowledge all the things that you haven't had a chance to stop and acknowledge because it is a huge deal to take on the responsibility as a caregiver and to go on this journey full stop. But the moving parts of it, the move days and the decisions leading up to that and the hope for it to be successful and stuff after, that is a huge deal for everybody involved. So I think that acknowledgement is a really big deal. And my challenge to caregivers is to take that moment, acknowledge what you have achieved, what you've done, why you've done it, and who you are as a person in playing this role. 

And then look for ways in the following hours and days and weeks where you can show yourself some grace, where you can recover and regain maybe a little bit of your time and your life because of this move. And just take care of yourself in as significant a way as you can.

If the move of your loved one had conflict within your family or community around the decision, after the move could be a great time to send out a communication–maybe it's an email or a text message– to update the community around the loved one; let them know that the move was successful, that they are there and that you appreciate, their support in making this happen or in ongoing support in this new move for your loved one.  So that the people who have supported you around this feel like they know it's happened and the people who have maybe not felt good about it or questioned it can have some peace of mind and understanding that it's complete. And that's a good way to kind of solidify that the move has taken place, as well.

Shoshawna Rainwater (50:10)

Yeah, really important. In today's episode, we talked about the mechanics of a move. So really getting into the details about how to make a move when you are caring for a person with dementia. 

Rachel Coady (50:26)

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

We'll be back in a few weeks to talk about reimagining caregiving and what it could be. Until then, thank you for all that you are doing and for listening.

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  (51:16)

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  (51:34)

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