Does Alzheimer’s or another type of dementia run in your family? Are you afraid that you’re losing your memory or you someday well? Are you trying to support people you love as they grapple with dementia? If any of these applies to you, you’re going to find this episode both enlightening and comforting. My guest is an end-of-life planner who specializes in preparing people for the possibility of getting dementia. It turns out there are so many tools and strategies that can help people feel less panicked and overwhelmed, and more hopeful that they can go on to live a happy fulfilling life—with or without dementia. I am so excited for you to listen to this important conversation that I think is going to quell a lot of people’s anxiety about the issues we’ve just mentioned.
Welcome to More Beautiful, the podcast for women rewriting the midlife playbook. I’m Maryann LoRusso, and I invite you to join me and a guest each week, as we strive for a life that’s more adventurous, more fulfilling and more beautiful than ever before.
Maryann 01:10
Emerson Lee is an end-of-life planner who specializes in preparing people for the possibility of getting dementia, a certified dementia practitioner, as well as a certified Montessori dementia care professional. Emerson offers support to those who have been diagnosed with dementia, suspect they could be losing their memory, or are experiencing fear about future memory loss. As someone who has Alzheimer’s in her family, I am incredibly grateful and excited about chatting with Emerson, who by the way goes by they/them pronouns, and to find out more about the work they do, why they do it, and most important how they help clients through a very stressful time, by reframing what’s happening to them in a more positive and hopeful light. And for those of you out there who have family members with dementia or memory issues, this conversation may help you better understand what’s going on with your loved one, be more present with them, and help you cope with any fears you might have about their quality of life and their happiness. Emerson, it is so good to see you again. How are you?
Emerson 02:10
I’m doing well. I’m really excited to be here. Thank you for having me.
Maryann 02:14
Oh, I am so excited to have you here because this a conversation I’ve been wanting to have for so long. And I think you’re just the person to to be here talking about this with me. Emerson, there’s so much stigma in this country about so many things, and dementia is one of them. A lot of people are afraid to talk about dementia, let in, let alone admit maybe that they’re having memory issues themselves. And some of those people may be understandably crippled with fear, especially if like me, they have a family history of Alzheimer’s or some other type of dementia. There is also a lot of shame attached to losing your memory. I know my mom felt it because years before she was diagnosed, she would shy away from things like playing board games or giving directions or doing other things that require diving into her memory bank out of fear that she would appear unintelligent. Just knowing that you’re out there doing this work, which is really a new kind of work—supporting people who are afraid of what’s to come—makes me happy. And I can’t imagine the patience and the compassion you must have to do what you do. Tell us why and how you got into this line of work.
Emerson 03:22
Yes, and I love that you started with stigma, because in a lot of ways, I’m less of a dementia specialist, and more of a stigma specialist. There is the disease of dementia. And then stigma is also kind of its own disease that makes it so much harder and so much worse in a lot of ways. [Earlier in my career], when I would spend time with someone living with dementia, [beforehand] I was like, oh, yeah, this is gonna suck. It’s gonna be doom and gloom. We’re not gonna have a good time. And then I went to go spend time with my uncle, who lived in the Bay Area…We did yoga and ate burgers, like we had a really nice time together. And I didn’t know him before dementia. So I had no comparison to say, Oh, he’s so different…I just got to be with this fun guy. And that was the starting point…Everyone in the family was wringing their hands like, Oh, he’s just not the same and it’s really bad. [Meanwhile, he and I] were just having a blast. And that continued every time I spent time with someone living with dementia. And then eventually, when I got into memory care, which was kind of happenstance, the world kind of led me there…The first day at memory care I thought, these people are fantastic. I was like, I love them. I love to have our conversations which don’t always make sense. I’d love to have dance parties with them, even if they’re in a wheelchair. I still pride myself on the fact that I got every single resident out on a walk around the building. They loved that so much. So it was really those experiences which were so meaningful, and then that contrast with a world going, Oh, your work must be so sad and hard. And I’ve just been exploring that ever since then, being like, no, they’re actually pretty great. And why do we think that they suck so much?
Maryann 05:15
Interesting. And you just brought up another question for me: Why do some people suffering from dementia seem so happy and at peace, while others have a lot of anxiety? Obviously drugs may come into play, but is there a basic growth mindset or preparation that some of them had vs. others?
Emerson 05:38
I’ve thought about that a lot. And something I’ve noticed—which is purely anecdotal, but I’ve heard it from other people, too—is that if someone was like a doctor, or a lawyer, and often men, people who really prided themselves and found their identity in their cognitive abilities, they’ll often have a really bad time. And they’ll be like, this sucks. I hate this. And then you’ll have a lot of people who are just like, this is where I’m at. And like you said, the growth mindset of like, you know, I’m still enjoying life and still laughing. And yeah, it’s like you’re saying, sometimes people are more joyful and seem less burdened. Once they kind of release some of those cognitive abilities, there can be a lot on the other side of that. And I still am exploring what makes someone able to do that and be in that mindset.
Maryann 06:27
So what is the top reason that someone gets in touch with you and asks for help? Is it more commonly the patient or their family who reaches out? And is there usually an inciting incident?
Emerson 06:37
At this point, I’m working solely with people who are afraid of getting it. (For patients and families currently experiencing it, I have a fantastic contact that I refer people to.) The core reason they come to me is they’re terrified of getting it, but they don’t want to be. And that’s a big distinction. I did a tabling event recently. Some people are like, Yes, I’m scared. I don’t want to talk to you. And I’m like, that’s just fine. You know, if you’re not there, you’re not there. If you don’t want to feel differently, I’m not gonna force you to. But it’s specifically people who are like, I’ve been scared of this for so long, but I don’t want to be. I’ve I’ve had people tell me, I’m tired. It’s exhausting. I worry so much. You know, every time something happens in my memory, I’m like, oh, no, is this it? And that headspace is so lonely, and so scary. And so coming together, and exploring that, is where people gravitate toward that one. That’s what they’re wanting.
Maryann 07:44
What percentage of those people have already been diagnosed?
Emerson 07:48
Almost none of them, actually. I’ve worked with a lot of people living with dementia, both in memory care and a couple other settings. And I know a lot of advocates living with dementia. The people that keep finding me are the ones who might be a couple years away from it. [In the years prior], like you were saying, with your mom, you start withdrawing from activities earlier, and you start you know what’s going on, but you can’t talk about it. No one’s really in that space with you. I can’t say for sure if all my clients will develop something. And if they don’t, that’s great. But yeah, they’re noticing things. And it seems like they might get a diagnosis soon. And one of my hopes and dreams actually, is that people will do this work with me before it’s necessary. And then they’ll choose to seek out the diagnosis…because then the emotional experience would be so different. When you’re saying yes, I’ve noticed these things versus the doctor just told me and now my life’s gonna spiral.
Maryann 08:55
Yeah. And I will say it’s so hard to get a diagnosis in some cases. It took forever to get one for my mom. And then the irony is once she got one, she cried, but then she forgot about it five minutes later.
Emerson 09:12
Doctors will often dismiss people. So if someone who’s too articulate and too early in the process goes and says, I’m noticing these things and I might have something, the doctor will usually say no, you don’t. So that is something if anyone’s listening to this and they think oh, I should talk to my doctor, just be prepared. You might need to self advocate or reach out to someone like Dementia Action Alliance or National Council of Dementia Minds. They know that happens and they can help you with that.
Maryann 09:47
I’m gonna throw in this question because of my audience. I know a lot of women who are out there listening are in this perimenopausal or menopausal state, and one of the symptoms is brain fog. So how do you differentiate between what could be happening to you during menopause and you know, something more insidious?
Emerson 10:03
Yeah, I love to think of it as not just a spectrum between not having dementia and dementia, but also all the other brain stuff. And in my work, I don’t really differentiate, because I’m not the medical diagnosis provider, I just want people to get comfortable with all the ways our brains can be different. So brain fog from menopause is a big one. And grief and pregnancy really mess your head. I have ADHD, OCD and autism. And all three of those do a lot. And so one of the broader visions of the work is, all of our brains do different things, so how can we get comfortable no matter what it is? And then if someone is feeling like, yes, this is diagnosable or something more serious, then we can have that conversation of like, let’s get you to your doctor to talk through this and feel empowered in that process.
Maryann 10:52
Once you are working with someone, tell us a little bit about your process. What is a session with you like?
Emerson 11:01
It is evolving right now, which is kind of cool. So I won’t share too much about what the structure will be like, because it might change. But one of the first things we do in the “going from panic to power” program is document your preferences. You know, do you drink coffee or tea? What music makes you get up and dance? What foods do you want to eat for the rest of your life? So it’s all these kinds of life things, almost like a personality quiz. And it’s just fun to be like, This is who I am, this is what matters to me. And that’s an easier place to start than being signing an [advanced healthcare directive form]…I do a lot more of the psycho-social-emotional stuff. So documenting preferences is a big one, and sharing them with your people so that the people around you know, this is what’s important to me, I want this in my life. And then a lot of reharmonization work and visualization of I will still be a person, I’ll still be myself. And these are the ways that you could do that. And picturing yourself. Maybe you’re in a wheelchair at your favorite park. Maybe you can’t say your loved one’s name, but you’re still having a good time. So those are three of the big steps. And that it has been really transformative for people. Because we don’t do really any of that. And so even just saying a favorite song people are like, oh, yeah, like I can feel that shift of it.
Maryann 12:24
You know, I’m so glad you brought the music and I’m so glad you use music in your in your sessions. Because it is such a powerful tool. I mean, even with my mother. I remember one day she was a little bit depressed. And she was sitting in her chair in the Memory Care Center, looking out the window and watching the autumn leaves fall and she started kind of singing that …Nat King Cole song…“The autumn leaves caressed the trees…” And so I played the song on my phone and we started singing it together, and the smile that came on her face. She was so excited, so happy. And then we set up a playlist for her. What is it about the music? Is it the neural neurological connections that take them back to their youth?
Emerson 13:03
Yes, that’s another thing I could talk forever about. I call what I suggest a neuro-optimized playlist. And so there are specific ways you can choose songs that are more likely to remain accessible to you. So if you if you learned a song five years ago, that might not stick as much as something you learned when you were 10 years old, especially between the ages of 10 and 30. So long-term memory is really connected to it. Musical memory is one of our longest kinds of memory to be maintained. It often will stay for the rest of someone’s life. So people who can no longer speak can sometimes still sing, which is a really cool thing to witness. So yeah, there’s just a lot there. I’m actually hosting an event soon all about that. It’s called Dance Party With Your Future Self.
Maryann 13:49
That’s so cool. I saw that on your website.
Emerson 13:51
I’m super excited for it. And we’ll be talking about the power of music, telling some of my stories from memory care, and then talking people through making their own playlists while we’re there. Because it is that is my number one recommendation. When I do a tabling event and people say, “Oh, I don’t want to talk about the fear of dementia,” I’ll be like, “Well, let’s talk about music.” My number one recommendation is make a playlist. And you can just see that shift, they’ll go, “Oh, I can talk about music.” And that gives them comfort to be like, “Oh, that that’s a tool that can serve me well.”
Maryann 14:24
I get so sad when I see some of these patients in front of the TV for hours. And I’m like, no, just turn the radio….The place where my mom is actually wonderful. They have live music, they bring in bands…and I see the difference in how they’re reacting, whether it’s TV versus the music.
Emerson 14:43
And one of the things I always point out is it’s not just listening to music, which is great. But also if you have a new caregiver who’s telling you to go take a shower, that’s really scary. But if you’re playing familiar music, it’s less scary. Another one is if you’re going to the hospital, I always recommend having tablet next to the bed, because then they’re hearing something familiar. And they’ll feel far more comfortable. There’s just so many applications that are not just the music, but pairing the music with an experience that’s usually difficult, that can make it far more comfortable for both the person and the people around them.
Maryann 15:21
These are great ideas and tools. But when people find out or when they think they’re getting dementia, they have to feel extremely vulnerable, right? How can they channel that vulnerability and get to a peaceful place about what’s happening to them? Or have some hope? How do you get them there, if they’re not there already?
Emerson 15:42
Yeah, I think one of the first things I do with people, and it’s do this through a session called Power in Your Pocket, the visualization, like I was saying, of just identifying a few of those things where you can start to have that vision of yourself. I often suggest singing a song, so that they’re actually visualizing themselves in a nursing home experiencing that moment. That helps because it’s so visual and visceral. And then from there, it gets a bit more cognitive, in that we’re actually looking at what are some of the myths? What are some of the misconceptions and the things that we don’t know about dementia, there’s a lot about people currently living with dementia, that the mainstream person is not hearing. So there’s a lot of education that goes with it. It’s both connecting with that future self, and also learning about what myths we’re currently carrying with us. And once those two things happen, once the visualization goes up, and the myths go down, that’s where people start to feel more empowered.
Maryann 16:43
Do these techniques work after the person has gone deep into dementia? Because at that point they’re going to be more reliant on other people and may not remember [themselves] to do the techniques.
Emerson 16:55
Yeah, it is a lot. Once someone has it, it is a lot of other people assisting them, which is why one of the absolute core components of what I do is sharing it with your loved ones. So if I were to work with someone who has it already, and I do, sometimes I’m planning to do more of that as like a separate component. I’m currently working with some in homecare agencies on this, I have a tool that documents all of people’s things like like the music, the nature, the food. And at that point, it’s getting the people around them to do as much of that as possible, you know, they might not be able to say I want to go to this park, or, you know, make me this recipe, but it’s kind of a scavenger hunt for the people around them to say she always went to that park every single day when she was younger. So let’s bring her there. So it becomes that that team project. Whereas earlier, you know more in midlife or the later midlife, they can be more of your own project. Yeah, it’s much more collaborative,
Maryann 17:52
How many of your clients still have a lot of their memory, but are just afraid of the future? And are they easier or harder to work with?
Emerson 18:03
Yeah, there’s a really interesting middle ground where people are not super sharp. And sharp is such an interesting concept. But you know, they’re not, don’t have all their wits about them, or however you want to say it. And people who are in the depths of dementia, there’s such a broad spectrum, and most people I work with are in there, where, you know, they do forget words, they do stumble over what they’re saying they do lose their train of thought. My group calls are really funny, I caption them. and myself included, a lot of us are very rambley forget things. And we embrace that, we say that on the calls like, this is the best place to do this, you know, we accept this here. So it’s definitely memory murky territory when I’m working with someone. And it’s interesting, like embracing that, you know, I’ll hear my clients support each other and be like, That’s okay. Your brain can do that cartwheel, I use the term cartwheel for those. And it’s, it’s a really affirming space that we share that kind of space together.
Maryann 19:00
I find that amazing because like with my mom and my aunts and my grandma, all of them who had dementia, they went from completely denying it and thinking nothing was wrong, even though we could tell things were wrong to go into full blown dementia, and there was never a period of time with any of them where they were like, Oh, maybe I should seek some help. I’m impressed with the people that do. Are there tips for people out there who could be in deep denial, but maybe should seek out some guidance?
Emerson 19:33
I have a whole theory on this. And it’s a really interesting thing I’ve been noticing. So the phenomenon you’re talking about is there’s a term called anosognosia. And that means to not know that you don’t know it’s the same thing we see in someone who’s schizophrenic and says, I don’t need to take my meds because nothing’s wrong. So anosognosia has been described as being neurobiological that to some degree in our brains, we can’t recognize the problem. So for a while, when I first start this work, I was like, it’s an awesome note that they’re just literally incapable. And I think for some people that might be true, which is tricky with dementia, that people aren’t capable. But I started to see when people were in empowering settings. And when dementia was talked about more, and when their loved ones were in more of a collaborative mindset, instead of the like, you have dementia, you have to stop driving mindset, which is just very common in our society…they recognized it. And there didn’t seem to be the anosognosia. And one of my colleagues actually does Montessori work. And she says she’s never worked with anyone who doesn’t know that they have dementia. So I’m still really curious about that. But I really do think the more we have empowering conversations around it, and an empowering mindset about it in ourselves and our loved ones, I think we’re more able to recognize it. So I wouldn’t anticipate that you tomorrow are going to be totally gone and have no idea. I really think that we’re set up to be able to recognize that some changes are happening.
Maryann 21:02
Yeah, it’s really interesting. I know a lot of people right now in midlife who are dealing with a parent who clearly has signs, but the mere suggestion of them getting a nurse or going into a nursing home, or assisted living or whatever…it just causes fights. Would you have any suggestions for [caregivers] on how to suggest alternative living without antagonizing the patient?
Emerson 21:32
It’s really hard, because the cultural norms are so strong. And the internalization is so strong. That’s part of the reason I’m working with people who are ideally 20 years before that, because it does get so so messy, the best recommendation I have, I call it the side by side approach. So our cultural norms, which is just, we just all do it, it’s face to face confrontation, it’s you know, Mom, you have to start wearing diapers, Mom, you have to stop driving, whatever it may be. And that’s just kind of how we do parenting and education, all that kind of stuff is just a like, you got to do this thing. The side by side approach is more like, oh, I bought these, these briefs for you to where if you need them, and they’re here, or it’s, I’ll drive you to your appointment. So it’s doing as much as you can not to confront, but to just come alongside. Um, it gets really tricky if it’s an urgent point where they need to go into memory care like today. But the sooner you can implement a side by side collaborative empowering approach, the less likely there is to be conflict. And I recommend that because as soon as you start having face to face confrontation will often build. It’s really, really tense. And that’s where a lot of people are at just, we haven’t been equipped to do anything else. And doctors will say to you, they’ll say, you know, just tell him, they have to, you know, just take the keys. And that’s one of the things a lot of my colleagues and I are trying to do work around is how do we get people, you know, before the Take the keys moment? How do we help them? And I have a lot of empathy for people who are just there, you’re just out to take the heat moment. And if that’s what you have to do, that’s what you have to do. But if you are anywhere before that, do as much side by side as you can.
Maryann 23:13
Yeah, that’s my sister and I and I, we tell people all the time, the earlier the better, because it is heartbreaking when it’s in the late stages. Really? Do you have any other do’s and don’ts Emerson for people out there that are engaging with a dementia patient, and some tips on how to make them feel happy and comfortable?
Emerson 23:30
Yeah, a lot of it is just knowing who they are and what matters to them and doing as much as possible. So much of the dementia world when you Google it, it’s really intimidating and overwhelming. And there’s so many logistics. And so we forget that it’s really about the relationship we have with them, and the experiences we have. And so that can get lost. And it gets especially lost when things get really hard and messy and there’s moves and changes. But that’s a big one. And that that can be really hard for people when the person is changing. When they’re seeing differences they didn’t expect. And so continuing to be with that person. One of the examples I give is, you know, if someone thinks that you’re their grandma, and they’re a child, you can connect with them as their grandma, you know, you can share with them in that moment. You can, you know, follow their lead and be in that reality with them. And that’s not disconnection from them. So finding as many ways as possible to connect with them non verbally or connect with them in different roles and relationships. We talk a lot about improvisation in the dementia world that we’re improvising when they think that they’re walking to school, we walk to school with them, right? You think families have a really hard time with that? Because it feels like Well, I’m their daughter and I’m not walking to school with them, you know, so it feels like I’m not there, if that’s where she is. But we can be there with them and connect still. You know, and that. That really helps a lot of people When you think of the reframe of I’m still connecting not I’m not connecting anymore. Yeah, improv
Maryann 25:05
is a great analogy. I’m glad you said that. Because I think everyone who has a parent or a loved one with dementia should take an improv class. Because I think that’s the underlying principles, like just go with it, right? Because if you don’t go, if you contradict, you mess up the whole scene. Like, we had this one incident, my sister and I were visiting my mom and a nurse walked in and said, my mom’s name is Phyllis, she said, Phil, is always to look just like you. And she goes, my mom goes, of course they do. They’re my sisters. I was about to say, No, Mom, you know who we are? And like, no, oh, yeah, it’s so nice to be here. You know, like, we just go with it.
Emerson 25:39
When it’s so fun, because she might have told you something there, she’d tell a sister but not a daughter, you know, sometimes, the stories they wouldn’t otherwise tell you. And that’s, that’s what the improvisation does is you discover more with them when you go where they are, as opposed to just forcing them to be where we are. Because where we are is kind of boring a lot of the time,
Maryann 25:59
Right now my mom’s stuck at age 21, which I think is the perfect age to be, you know, she’s having a good time. But ever since I expect, you know, everything you’re doing with patients and their families really relies on the environment that they find themselves in once the dementia progresses, we talked about how to find that environment and how to get them there. But I think that’s what people with a family history or people who have a family member suffering fear the most elder care, right, especially combined with memory care, it’s so expensive, it’s there are places that are not so great, it’s really tough just to navigate that whole system and find a place any recommendations for just keeping yourself calm during that process.
Emerson 26:40
The tool that I recommend helps a lot. It’s called a Momo map. And it’s people have exchanged Well, I can’t show you because I can’t show the podcast you will. But I have mine on my wall here. And it’s just one page, and shares really who you are and what you love. And that brings a lot of comfort to people because they can say this is my person. So no matter what kind of care setting you growing in, sometimes it’s the closest one to your house. And maybe it’s not the best one, but you want to be there. So that can make any place a better place. And it can make you feel like, you know, one of the reasons I made it is people would scribble onto the whiteboard saying mom needs her coffee every day. And it’s an easier way of doing that. It’s, it’s a shortcut to getting them to know who this person is and how to be with them. Because it is it’s terrifying. It’s such a vulnerable feeling to think there’s so many places out there, there’s so much bad stuff happening, and not even really bad stuff. But just the like, being dismissive or invalidating or not, not really understanding who they are. And so the more we can do to say, This is my mom, and get them taking care of them better, faster, that that goes better for everybody, the staff has a better time. The person of course has a better time and then family feels better about it, because they’re like, Okay, you know, I’ve put them in safer hands because I shared what was important to them.
Maryann 27:59
Yeah. And I mean, in terms of finding the place itself. I mean, I don’t know why this country is so messed up in terms of health care, but it should not be this expensive. I have a friend who has her mother in a place in Thailand, so that she can be in a beautiful place and beautiful environment, because there’s nothing like that here. I wouldn’t go that far because I want to travel back and forth. But I mean, in terms of navigating Medicare, and the in visiting the homes and finding the place that seems like a good fit, are there people who specialize in that, that my listeners might be able to reach out for anyone who would recommend?
Emerson 28:35
Yeah, geriatric care managers are a role that a lot of people don’t know about, and that are very helpful. There. They are geriatric, we specialized people who help navigate things like that. So if you Google Geriatric Care Managers near you, there’s often a lot of people, another one is relocation or relocation specialist. And they will help you navigate that. One of the tricky things with that is that they are often like contracted with the places they’re showing. So you want to go in with that awareness that, you know, they it is still salesy in some ways. So just
Maryann 29:10
being conscious, even the best ones tend to be in VR,
Emerson 29:13
all of them are that something I didn’t know before being a memory cares, like this is for profit. And that’s part of the reason I created a tool like that to empower anyone who goes into any part of the system, because the entire system is gonna be for profit. And that makes it really hard. I have a lot of big feelings after having done a memory care, but there is a lot you can do to protect your loved one to get them into a better place. And even if it’s not a better place to advocate for them there. I always say wherever they end up, you’re their eyes and ears and you can make a ruckus about it. You know, I loved when family members complained to us, I was like you have the absolute right. So some of the caregivers they, you know, be really, really annoyed and I’m like, no, they have every right to complain as much as they need to. But that’s hard that’s hard on your ends because you don’t want to make the relationship worse. You Mm hmm. Very, very tricky. So it’s
Maryann 30:01
A fine balance, right. And you want you want to have good relationships with the staff. But at the same time, you want to make sure that they’re all keeping your loved one safe. And there are some who are better than others. And I, for me, what works is finding and my sister who’s really getting the brunt of this, because she lives closer to my mom is making friends with the people who are you know, they have great personalities, they’re loving, caring, empathetic, like yourself. And that really helps. Ever since should your loved one visit the facility. I mean, it’s so hard to get some of these moms and dads there, they don’t want to go, they don’t want to visit nursing homes.
Emerson 30:37
Yeah, one of the it’s so tricky, because for some people, they just won’t. And to some degree, we have to honor that autonomy and be like they’re not, they’re not going to just go have a great day checking out places. But one of the ways you can do it is to say, you know, we’re looking for a new apartment, or we’re just going to check them out and see we’re gonna go to try lunch, they’re doing something so it doesn’t it’s again, a side by side approach, you’re not saying like, we have to go find a place for you to go move in. But just saying like, we’re just gonna go check them out. Something that’s a little gentler, the lunch visits and the apartment kind of thing helps a lot. And also sometimes telling people that it could be short term. So instead of saying you have to move in there, and you have to stay forever, because maybe it will be short term. If they hate it badly enough, you would move them somewhere else, right? So not not insisting on that forcefulness that face to face confrontation, but just kind of a more relaxed, collaborative and improvisational, it’s improvisational, you know that you’re kind of creating the scene where they feel a little safer than the go choose the room, you’re gonna die in kind of concept. That’s what a lot of them perceive it as,
Maryann 31:44
yeah, and I understand why I mean, we need to rebrand this is kind of like a college tour type, you know, second take to college tour. Because, you know, I always thought like, if these places had really beautiful open houses, or ways that made you know, them seem more festive and inviting when you walked in, it would help a lot.
Emerson 32:03
Yeah, that’s part of what’s so hard is, there’s so much we could do to make the experience. Like I think the same thing about hospitals, hospitals should be the most comfortable place in the world, and airports and hospitals. So comfy, and they’re not insane with long term care, like, they try they say it’s homey, all the stuff that people know. And that is one of the things that hopefully will change with time, and it is changing, that’s part of it, there are a lot more kinds of places that are more supportive. But yeah, one of the things too, is pointing out, you know, like, if you go and visit saying, like, if you go before, and you check out, what’s the things that they’re gonna really like, that goes along with knowing who they are being like, oh, it’s pet friendly, and oh, there’s this really nice lady there if you’re gonna really like her where they have this gorgeous garden with a fountain. So really selling them on the really lovely things, while also recognizing that those things, a lot of older people will be like, I don’t care. All right, right away. It’s tricky.
Maryann 32:56
A lot of people also have guilt about even visiting homes with their loved ones. And they tried to, you know, just kind of absorb the burden themselves. They take their mom or father, you know, to their house, they hire a nurse, so they can’t afford to hire a nurse. They’re doing it all themselves. And then they get so burned out. Right? Do you I mean, how do you feel about caring for someone in your home is that do you find that the outcomes are different facility versus at home care?
Emerson 33:20
I do think that in home helps for a lot of people because of the familiarity. And so if you aren’t going to move into long term care, or if you need to, creating as much familiarity as possible helps like, some people will move in and they’ll just have a suitcase and I’m like, get their curtains, get their bed and get your lamp, you know, as much as we can get photos on the wall. Anything that they see that’s familiar helps. But the yes in home is often where people want to be, it’s often where they thrive, but they can thrive in long term care too, especially if they’re social. I’m not social, I want to be alone. Like for people who are extroverted, like one of my grandma’s like, I’m like, You’re gonna love assisted living, you’re gonna go talk to everybody all the time. So it depends on the person. But Familiarity is important, no matter where someone goes.
Maryann 34:07
Yeah, there’s one guy on my mom’s floor and I feel like I have all the women are always surrounding him, the poor guy. He’s an introvert and you cannot get away from him.
Emerson 34:16
It’s hard for introverts in any residential care setting of any kind. Yeah, introverts don’t always have a great time, especially some of the places don’t want people to be alone in their rooms. And for some people, that’s what they prefer. So it’s, that’s one of the things you can advocate for being like, my mom wants to sit in her room and watch TV and you guys need to let her because that’s, you know, that’s where she’s gonna be happy.
Maryann 34:37
Right? So true. Okay, one more question about caregiving, and then we’re going to circle back to the patient. If we are caregiving at home, or just going back and forth to assisted living, how can you take care of yourself so you don’t burn out and feel exhausted and guilty and all those other things?
Emerson 34:53
Yep. One of the cool things about my work you know, I focus on music and nature and food all Those kinds of things. That’s exactly what you want to do as a caregiver to, you know, you want to be as tuned in as possible, you know, someone’s mobile map, you want to have a full map to know all those things. You also want to know them about yourself, what are my songs, what are my, you know, foods that bring me comfort, because those are the things you know, if you’re driving home after a hard visit, that’s the song you can turn on, or that’s the snack you can get on the way home. I call those micro delights. And it’s really quite a foundation for what I do, because there’s so much near neurobiological power for them in so many different situations. And they apply just as much to caregiving as to the person having care provided. And it sounds it sounds kind of like a treat yourself kind of thing. And that sounds like a lot of a lot of caregiving on here is you know, people will say like, oh, just like do something nice for yourself. But it’s kind of a deeper level of like staying connected to who you are what matters in really small accessible ways that you know, a spa weekend is probably not going to happen for someone but a lotion, that is a really comforting scent to them.
Maryann 36:01
Yeah, it’s kind of similar to the advice you would give like a new mom almost because I have people that I see caring for the elderly, dementia patients, they kind of are in the same state as someone with a newborn at home, you know, they haven’t brushed her hair and days, they haven’t showered, they’re exhausted. They forgot what they love to do. They don’t have time for themselves, they feel torn in so many different directions. So I love that you’re saying I think they need to do some sort of deeper self care.
Emerson 36:27
Yeah. And really the accessible small moments just like you know, if you have a newborn, it’s it’s not going to be getting away, it’s going to be really small things, and feeling really nurtured by those small things.
Maryann 36:39
Wow, some great tips here. So circling back to the patients, I love that you tried to create a bridge to their future selves. And you do this a lot through the creative, the creative stuff, like the music, and are there other creative outlets that you find help patients connect with their selves or tap into their creativity? And why is that side of us just so important if we’re going through something like this?
Emerson 37:03
Yeah, this is one of my favorite things to explore. And I, I can’t wait to continue doing this work for years, because there’s just so much to explore around it. But one of the things we don’t realize is we think of our cognitive abilities. And we either have them or we don’t. And it’s good if we do and it’s bad if we don’t, well, outside of our cognitive abilities, we have musical memory, we have creative expression in so many different forms abstract painting, or writing silly poetry or telling stories. We can non verbally be with people. And so there’s, there’s so many things, our appreciation, that’s another word appreciation for nature remains really high. So there’s all these elements of our humanity that remain. And so the more that we do that, both now and in the future, it really connects us to so many different things that aren’t dependent on cognitive abilities. So that’s a really, really big comfort to a lot of people to go Oh, like music will remain for me, nature will remain for me. And we don’t hear that we don’t usually hear that about if you get dementia or anything about your cognitive abilities that those things will still be there.
Maryann 38:04
Yeah, I think I told you when we spoke earlier that my biggest fear is that I know this stuff now. But then what if I’m in the throes of dementia? Am I going to forget my gonna forget to pick up you know, the instrument or to dance those notes to your future self? Does that do those help?
Emerson 38:19
Yeah, still goes along with the mobile map of documenting it as much as possible. And of course, it doesn’t have to be a mobile map, you can document in any different way that you choose to. But yeah, documenting them now to help yourself later. And also, when you do them, now it builds the neural pathways for leader. So a lot of those things happen naturally for people, you just memory care in really small ways. You know, like, there was a woman who just loved to sit and look out the window, another woman would go, she’d sit in a sign and she just gravitated towards those experiences, or they just loved food or whatever it was. So the appreciation is there. But it is hard, because the appreciation is there much much more when they’re given support for it. So that’s why I love memory care. I loved going in creating as many of those experiences as possible for people. Like you have to turn the music on for them, you have to get them the bowl of ice cream. And so part of that for our future selves is getting the people around us to know that. So when our loved ones here we have a diagnosis. It’s not just oh no, this is a terrible thing. It’s also Okay, time to get the ice cream. We’re getting a lot of ice cream.
Maryann 39:22
Yes, and yeah. So we were ensuring our future support from others as well. I love that
Emerson 39:27
and we’re oriented towards it in our in ourselves and the people around us.
Maryann 39:32
Yeah, you know, on this podcast, I feel like we’re at telling midlife people so much that this is this opportunity to kind of prepare and heal and just do all the things that we need to do before life takes us in some other unexpected direction. Like we tell people deal with your trauma now deal with all the BS now so that you can have a glorious life this point forward. And it’s the same thing with your creativity, right? Because I find that a lot of women say, like you like you mentioned, I’m not creative. I’m gonna go helped him. You know, I’m not creative. I’m an attorney, you know, but everybody does have a creative side. So would you say that midlife is a great time to figure out what your individual creative outlet is? And to kind of make it habitual make it a practice now, so that it’s ingrained in you?
Emerson 40:14
Yes, absolutely. And, and doing as much creative things as possible, too. So not just being like, Oh, I’m a painter, because then if you’re, you know, hands don’t work as well. I’ve actually known a lot of people who are like, there are people who are very realistic painters who then don’t pay any more, because they’re so frustrated, they can’t do something like stick. So doing super messy paintings, just to get your feelings out, or drawing silly little pictures or telling silly stories with your grandkids, whatever you can do that kind of gets you just being silly or more creative, and doing it in lots of different forms. It’s fun stuff. And, you know, if you do gravitate towards certain things, doing doing that, and sharing that, and making sure people know, you know, make sure I have my paints, there was there was a woman who had been a painter, and she would hoard all of our art supplies. And I was like, totally fair, I would.
Maryann 41:02
But they’re very important to her.
Emerson 41:04
Or you go to her closet, and it just be like pouring out with art supplies. And I was like, yep, that’s, that makes sense.
Maryann 41:10
She a kindergarten teacher or something, because they
Emerson 41:12
didn’t have we had a lot of kindergarteners and interestingly, I love that you mentioned that kindergarten teachers often still painted and did creative things, because the bar was lower. Whereas the ones who were like professionally, hers, wouldn’t. Yeah, it’s really interesting seeing that happen.
Maryann 41:29
I was thinking about her desire to clean up the supply cabinet. But that’s a good point.
Emerson 41:37
Really interesting.
Maryann 41:38
So Emerson, you’re saying we should play more. So many people have a hard time with that. It’s so hard. We say we’re gonna play but [it’s hard]. How do we make play a daily practice?
Emerson 41:51
There’s a group called Reimagining Dementia, a creative Coalition for Justice. And the founders of that are very into play and improvisation. And I have learned so much from them. It’s so much and changed my life. And yet I still find it so hard to be playful. I’m always telling them, my men mentor Mary Fridley at reimagined dementia. I’m always telling her, I’m like, I did this playful thing. I did that playful thing. I’m like, I did my homework. And it’s hard. It’s hard to do that as much. And that’s actually one of the shifts I want to make. My practice is actually guiding people and doing more playful things. Next year, I’d like to do more like creativity workshops, where we’re just doing some of the stuff. We’re doing the abstract paintings, because I need the guidance, and other people need the guidance. We don’t do it. Kids are actually the best way to do it is spend time with kids and kids will get you playful. There’ll be doing the all the different creative things. They’ll get you thinking in different ways. But it doesn’t happen a lot in our adult, very cognitively minded adult worlds.
Maryann 42:55
Yeah, that’s what everybody wants grandchildren probably. Yeah, no, it does help. Okay, so now something little bit more serious: Some interesting lines of work seem to be emerging. You are also an end-of-life doula, and you say there’s a death positivity movement underway. Can you elaborate on that?
Emerson 43:13
It’s been evolving for years, as hospice has gotten more popular, and people have seen more of the negative outcomes in our healthcare worlds. But the pandemic was a mass casualty event. That’s so easy to forget, like we went through a lot of death, all of us, individually and collectively. And from that a lot of people became end of life doulas, or got into different forms of grief work or…there are a lot of people who do things around funerals, and green burial, all this different kinds of stuff. And I think the world has just led a lot of us to this to kind of work as these needs are rising. This was a mass casualty event, but there’s also a lot of other ones happening. A lot of big, scary things. And so…the doula world is getting prepared to support people through these things. Because it might get worse too…We’re all gonna die, and so how can we be prepared so that we can live until then? The the core hope is that we both die well and live well.
Maryann 44:28
Americans are so fearful of death when some other cultures just view it as a natural transition, a part of life…and they have a more positive outlook.
Emerson 44:40
Yeah, it’s very uniquely modern in this specific part of the world, especially that we are the way we are and that’s one of the things we talked about as doulas, too, is we have always known how to die. Humans know how to die and they know how to be with people as they die. But for whatever reason…our society needs a lot more help with that.
Maryann 45:02
Thankfully there are people like you doing this amazing work. And we’re going to put all of the great links that you mentioned in the show notes. Emerson, please tell everybody out there where they can find you.
Emerson 45:21
Yeah, so I am on Instagram @let’smakemoments and I am on makinghappymemories.com. I also have a mailing list called Love Letters to Your Brain, which is designed to be affirming content. So if you heard things in here, where you’re like, Oh, that feels good, that feels supportive…those three places are where you can connect with me.
Maryann 45:43
Fantastic. Thanks again for joining us today.
Emerson 45:47
Thank you for having me.
Outro 45:52
Thank you so much for tuning in to More Beautiful. Please visit Morebeautifulproject.com for show notes and bonus content. And it would mean so much if you could subscribe, rate and review on Apple Podcasts or wherever you’re listening.
