Being Human is Hard with Dementia Darling, Carrie Aalberts

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Transcript

Erin: 0:35

welcome back to another episode of the Aspire for More with Erin podcast, where I am so excited to be able to have the dementia darling on this podcast, Miss Carrie Alberts herself. Miss, me care, I don't care.

Carrie: 0:54

here she is, here I am. Thank you for having me. I'm so excited to talk to you.

Erin: 0:59

You're welcome. I, I love watching you shine like this rainbow of energy into. What sometimes feels like a very gray space inside senior living, at times gray. there's certainly lots of joy and lots of happiness, but, having pink hair and rainbow social media content and the energy that you have telling people it's okay to have joy. is inspiring and needed, and I'm just so happy to have you here to share that with us and my listeners today. So thank you.

Carrie: 1:38

Thank you. Thank you. It is a, an honor to be in this community and to, I, I say it often. It's not lost on me that I have found my purpose and sets my soul on fire. I'm very, I'm really blessed and excited to, to talk to you and everyone about it. Everyone, we all need to be talking about dementia and joy and all the things, all the aging

Erin: 2:01

things. So I appreciate it. Yeah, it's true. And I, have just. Started realizing, I would say in the last six to eight months, how much there is that age related topics on social media that I never knew existed. And meeting you and Nicole and watching you and Adria Thompson and all the people that I have found that the algorithm has given me since I started following you, I'm just like, oh, my gosh, I did not even know all of that was out there. And since my listeners are podcast, it is rich for senior living leaders to understand. The content and the information that you guys put out because you are getting feedback from people that we want to serve as well.

3:00

Yeah.

Erin: 3:01

So your content is so important to watch. So tell me how it all, how did you get started? What in the world

Carrie: 3:09

brought you here? It's so crazy to think, but I do say, of course, the seed was planted because my grandmother lived with dementia and she passed away when I was 13. So very young when she passed away, I have no idea what was happening. but that definitely started it and watching my father be her main caregiver and going through that journey, first time I ever saw my dad cry type, thing really leave something on your heart, but I went into. College, and I was really lucky to go to a school that had a gerontology school. They were focused already on the study of aging, which many aren't unfortunately. So I was lucky to be able to focus my studies and aging and I was a little I don't know yet if I wanted to do that or actually. I wanted to just, I was thinking be a teacher. I was like third grade teacher, yeah, whatever. But then I really got to college. It was literally the first day of classes. I go to one class and I'm like, I don't like children. What am I doing? I can't do this. And I was talking to my parents. We're talking about gerontology. It's always been the, something we talked about. and they were like, aging, you'll never be without a job. Yeah. we need people in aging. So I was like, okay, I'm going to give it a try. Change my life. I, my first, internship was at an, internet, I always see international intergenerational adult daycare center. and it was the best. I was a caregiver and stayed there for years and learned so much. And, but that's what solidified it is just the joy and the, just like knowing when I was at that job, I knew I was supposed to be there. Like I knew this was my place. I felt like I really, truly found my calling feeling so seen and safe around people living with dementia. But through my. Career though, I've always seen, going from that and getting my master of science and gerontology and moving on to assist living in memory cares and doing activities, life enrichment director, things like that. but throughout this, there was always a common theme that. The family caregivers that I would come in contact with felt very isolated and very alone. And I would often be the first one, to tell them they're doing a great job and dementia sucks. And, thanks for showing up. and some of these people would be like, I've been doing this for 10 years and no one said that to me. And that broke my heart and that's what, really led me into going into social media and how can I, give everyone a virtual hug and say you're doing freaking amazing and tell all the caregivers, not just the few I had, the contact with. but. But, yeah, caregivers need to feel seen and being in the senior living world and stuff and then having both sides of seeing from their perspective, like you just said, and then having the senior living side and, just there's such a gap of, we, we both sides have such knowledge, but when we work together, it's a beautiful thing and that's why I love Nicole will so much. She's all about, connecting and building those bridges and same with you and it's all about building those bridges. that's really what. All of that to say has led me to being on social media as an advocate and educator is trying to, yeah, lifting up those voices.

Erin: 6:13

It's like you said, there is a gap and then there is like families. Want to feel my new favorite phrase, helped, hugged and heard.

Carrie: 6:27

Oh, it's so true. I love that. I actually had someone say to me, they were like, what do you need right now? When I was upset, they were like, do you need to be helped, hugged or heard right now? And I got to choose, and I love that. I think it's beautiful.

Erin: 6:39

So yes, go

Carrie: 6:40

off.

Erin: 6:41

like literally if senior living leaders could understand that and I'm, working towards building content around that of just. We're trained that it's, numbers, policies, procedures, all the things. There's not a lot of emphasis on that emotional intelligence, that understanding, That sales is service. Leadership is sales. People want to trust, to know, to feel safe when they're choosing a community and if all we are just facts and policies and everything else, we lose the ability actually be purposeful with what we're doing. Yes. And I am so thankful to have found people who share that desire of the purpose of what we do, because senior living is a business. Yes. Everything is a business, everything, but it's a business full of context and nuances and emotions. And if we're not prepared, then we don't understand how to navigate that. And that's where I believe. Where we all fit in to teach people how to navigate card stuff. Yeah, absolutely. So the families are looking for something from us that maybe we weren't aware of. And now that we know, we can do it.

Carrie: 8:06

Yeah, and I, yeah, and I think it's easy to forget how important we are in senior living. Your roles, these are people's lives. Yes, it is your job, but this is more than a regular job. This is truly personal. Purpose driven. This is people's lives we're dealing with. This is not something to take lightly and it's easy to get burnt out and it's easy to forget. And so I validate that. And I thought it's very hard to be in. Senior care business at all. Like you said, it's unfortunate that, everything's a business because we're dealing with people's lives. Like it's life or death, right? and that's heavy, but I think people, because we don't have, society doesn't have much respect for our industry. We're not, it's just not really, they don't care until you need us. And, it's not something we lift up a lot in our society and it's unfortunate because, again, it's people's lives and it's so hard to see, these caregivers, why I want to uplift their voices is they're coming to you. They're coming to us as professionals in the hardest moments of their lives. And yes, it's business. Yes, we have to treat some things like business, but when you stop and take a breath and just remember why you're there and why that person is asking you for help, there's just so much there. and you have, there's a lot of power in the positions you can hold in these places because you can make or break these people's experience in the hardest time of their life. Do we want to say the right words and validate and take a moment just to be with them in that moment and say, Oh my gosh, this sucks. You're right, but I'm here with you now, and I'm so proud of you for looking for help. And there's so much power in the roles that we can play in people's lives and their journey in these crisis moments. And so it just, you can't hold that lightly. And I look back at myself when I was younger and I did take it lightly and I don't now. And I had to learn that through a lot of years, how serious my job is. I'm not just doing activities. this, it was serious work and, yeah, and I think we need to put more respect on the work that is being done.

Erin: 10:26

Yeah, it's, I talk to when I go out and speak, I say things, I try to put it in the perspective of what do we want from the leaders of our kids school? What do we want from the teachers? What kind of. Empathy and emotional intelligence do we want from the leaders of our children to where they can mold, shape, grow, our kids and the roles are reversed because senior living is the same exact way because we are taking care of a very vulnerable population who are looking to us to guide them through the next steps. Yes, that's it. they are paying us top dollar to be a guide. And I think that there's just a lot of people who don't understand that or don't want to accept that responsibility, which. Is fine. I think that just limits you when a couple of people down the street, a couple of competitors down the street do take that role and that responsibility. Very serious, me as a leader, I led great teams, had great communities, but my number one goal was service. It wasn't in a why just so happens that when you do actually serve people in a very customer service purpose driven way. Guess what happens? Your NOI increases and it actually might no way budget

Carrie: 12:09

exactly. And when you feed into your staff, that has so much to do with it. and it's just, yes, there's so many layers to this and it's not easy and it's, but when you figure it out. it's everything and yeah, I think there's, like you were saying, and like we're touching on it's of course being empathetic and meeting the families where they are, but really lifting up the staff too, and making sure they know how special and important their roles are and making sure they have the tools to take care of themselves so they can show up and be and give the care that your people deserve and that they would deserve if they were living there. And it's, we all want. The best care and I think, yeah, it really is. And I, I think. About which I think let's talk about, mindsets we've talked about before. It's it's there's so many things that can change when you look at things in a different perspective.

Erin: 13:01

Yeah, it really is. So I, I listened to your last panel. I feel like I've tried to make a lot of your. Stop. We met in a panel at TALA and I just want to say, we literally met

Carrie: 13:13

speaking on a panel together,

Erin: 13:15

speaking on a panel. And just a funny story. I am a conservative Alabamian woman. not like from a political standpoint, because I don't talk about politics, but just on a panel, I would never use cuss words. And Carrie, the passionate, joyous, person that she is with pink hair gets on a panel and says a cuss word and I about wanted to sink into my, to the floor. It wasn't the worst

Carrie: 13:54

cuss word. Let's throw that out there. I'm not going to get any work after this. And it made sense in context. And

Erin: 14:02

it was just so funny because I thought, Oh my God, they're fixing to throw us off the panel, but really. I'm just going to tell you, it really resonated with the crowd. I think it, the shock and awe of it, I think really did bring them in. And, then I saw you speak with your presentation by yourself and. we talk about mindset and we're going to get there, but I just want to say that authenticity right with boundaries but authenticity sells It's a connection point you attract who is supposed to be there and I was more impressed with, and I learned from your ability to just be you and make it work. I was so impressed. You brought all your toys, you were playing with them, you were like, Oh my God, it's sweating. And you were so real and you had the crowd. Every word you said. It was a master class in connecting and how perfection is not the goal. It is connection. And you like put that on display for me. there's a mindset to that. A, knowing your audience, but B, the work of knowing that you're enough and that all that you can do is be you. And I'm certainly that you have done that work.

Carrie: 15:40

Thank you for, no, I Aaron, seriously, that's so you and the nicest compliment ever. I've learned. first off, that was the first time I realized, oh, maybe I should think about where I'm at before I say certain things. I was like, oh, I might need to think about what states I'm in from now on before I say things. But also I'm at the other end where I'm like, but I can't, I don't know how to like, stop myself in the moment anyway. So there's no really censoring me. but It was

Erin: 16:06

not an

Carrie: 16:06

F bomb. There were no F bombs. Yes, I promise. It was very, it went with the story. But no, I, but no, I think I'm unfort, I don't think this is unfortunately, but me personally, I'm just such, I said this in my podcast with Nicole Gather Darlings. I'm such an open book and it's my favorite joke from an elder said, no one's read in that book. That's my favorite thing, but I'm such an open book to a point where it's probably a fault. But, That stems back to my ADHD being very open. But when I get on stage, I just, and just in life in general, I've always, I can even remember myself in middle school saying this to myself. I always want to be upfront about being human and messing up because I want other people to feel safe around me. And so I never let myself. I try not, I don't have much shame anymore and I like I and it's really and that'll probably be put to the test now, but it really is. And I send it back to my people living with dementia. I believe it or not, I was the shyest kid, super shy, but I started working in that intergenerational adult daycare and I never felt comfortable. Safer. I never felt more safe in who I was

17:22

because

Carrie: 17:22

the people there were just so happy. I was there to hang out with them. They didn't care how dumb I was, how bad my voice sounded or how terrible my dance moves were. They would laugh and be silly with me and just appreciate my presence and that I was trying and I got really comfortable. Cool. And being in my skin during that time, because I realized that my value isn't, if I'm perfect, like you said, I'm, I've never been a perfectionist because then I would have never, I would be locked in a room crying if I thought if I was a perfectionist, I would have never posted an Instagram, post if I was, I got to a point truly with my work where I just was like, wow, I can be who I am and make people happy. and I completely attested to people living with dementia for making me who I am today.

Erin: 18:16

Yeah. it's so funny because it's the same story with me. Like I have done a lot of work to get rid of the shame, to just show up as myself. And when I look back and I'm like, Why was High Heel Erin so far advanced than Tennis Shoe Erin? And it's because The people inside of the community were just so happy that you were there. They didn't care about anything about you, except your presence was there. You were making them feel good that you were trying. They were so kind. 80 percent of the residents were kind and said, 20%, were inappropriate or, you know. if you

Carrie: 18:54

work in dementia care, and that's why I did drop a bad word because I'm like, if anyone works with dementia, they've heard this. Yes.

Erin: 19:01

Yes. Yes. Yes. And it's just so true. And I'm so glad you said that. The world inside dementia care and memory care and adult day and senior living, it is a very forgiving world and it is very different than the world outside of it. And I like to compare, even niche it down to I have a typical daughter. I say that, a regular typical, a special needs son and a daughter who has, It's all no special needs and like I would say all the time to family members who were who are needed to higher level of care like it's a different world inside memory care and the only thing that I can compare it to is the special needs circuit, the circle of people, and the typical parents with kids who are typical, right? There is an element of success. No matter what inside the special needs circle and inside memory care. Yes. and that's what we want when we say when people need a higher level of care from assisted living to memory care, independent living to memory care, like we want them to be successful.

20:13

And

Erin: 20:14

what's happening right now is that they're not successful. And so there's a lot of shame built in that there's isolation, there's all these things. And so memory care is not always Success is not failure. It's actually success. Yes. When you change that perspective and then you add the element of joy in, which is what you talk about all the time. Like you can actually find joy again in memory care because all the rules disappear.

Carrie: 20:43

and that's, what's so beautiful about it is if you spend a little bit of time in, in a dementia world, you are In the moment and we don't get that we don't get to be in the moment and that is what is so beautiful and that is one of the silver linings. I, that caregivers and I talk about is if there's got to be one that you got to find in dementia, it's that people can they truly live in the moment. They can't worry about things coming up. They're not worrying about future, past regrets. and it really is a beautiful thing for us who aren't living with dementia to, to take that and enjoy those moments when we can. and I always say, there's that aspect of it. And, I'll just, as I'm on the like silver lining, there's one other silver lining I've been able to find is again, with the being in the moment People sometimes, not everyone, of course, we know blanketed statements and dementia are no, but I'm just saying we, we do see in dementia, some people that they let go of all social norms, they let go of all their past regrets, they let go of their anxieties of being human, that we all deal with and again, get to just live. And that's even more deep, deeper than just being in the moment. They truly are. Like nothing is holding them back.

22:03

And

Carrie: 22:04

of course this isn't everyone, but I've seen it and it's a beautiful thing

22:08

to

Carrie: 22:08

witness. If you got to find something beautiful in there and that happens. And I have a lot of caregivers, family caregivers that say that is one thing that I'm so happy for my person that they've gotten that. Yeah. Cause it's, they got, they have peace,

Erin: 22:21

Yeah, it's true. I will just say, just based on my own experience to highlight that, cause I, in my time inside of the community, I've always had a memory care, and I've said this over and over again, memory care, being a memory care administrator helped me be a better mother to my son with autism, because autism and dementia are really the same on the developmental hill, just going backwards. Yes. then I was just an administrator of a 64 apartment memory care community, where I really got to dive into the nuances of that. And then I became an administrator of the same community, but this is still living in the executive director amazing. I was, and then I will say that my son may be a better leader for memory care. just having that one on one understanding and in the home and in the community, but as a leader and as a person, I felt more free. You would find me dancing and lip syncing with my peers. future version of myself inside of a community. And I would lip sync with this woman where, and she loved Cher and she loved Joni Mitchell and she loved Aerosmith and we were lip syncing and dancing. And I was always hesitant to do that in assisted living, although I would do it, but I was free to do it in memory care. And there's a distinct difference. And when you find family members who understand, who understand or mourn appropriately, they actually have fun in memory care, too. They find the

Carrie: 24:00

joy in it, too. Yeah. And sometimes it's us as staff. Giving them permission because sometimes you just don't know, or you feel like you're being mean, cause you're like, my loved one isn't living the life they expected. So I should not be having fun in this moment. And that is valid. So I think people need to learn from us, and we show them that there's, there can be fun and there's joy and, I love that you said that because it is, it's such a. It is a free feeling and truly going back to that is why I feel so free to be who I am. And. And, you know, I know that will change if I ever go viral and the, outside of our little community gets to me, it might be a little rough on my heart, we'll see how that goes. but I'm going to have to work on my rejection, of being an entrepreneur. So I'm going to have to do that, but no, I think, yeah, it's a beautiful thing that people, we don't talk about. and it's hard to say, Oh guys, there's positivities here. We can focus on. and that's the hard line I'm always writing because I never want to be that. I even have this good vibe sign above me and I feel annoying. if it said good vibes only, it would not be on my wall because like you, and it's valid. Like I have a lot of caregivers are like, in that line, you cannot do the toxic positivity or just be down, in the dumps all the time either. And so it's, us as professionals being able to validate always and then show another side. And show the different mindset. you know what, you don't get here overnight. You don't just wake up tomorrow and say, I'm going to find joy in this journey, but it takes years and it takes time. But, showing them along the way is everything. and just before we, before we move on from the subject, I just wanted to say, and I know Aaron and I both know this, but for people that, if we need to just throw that out there, we know that not everyone living with dementia. Makes us feel free or doesn't make fun of us. As you said before, like when we're being silly, many times I've been called the meanest thing. So I'm not saying like everyone is again, free with dementia or they're loving us being silly. it's not always reciprocated, but you can feel that energy. and again, I just posted today, They might not remember who you are, but they remember how you make them feel. And it really is your vibe. When we go in and dance and sing, that's remembered. Those are fun people that make me feel light and good. So that's something to note. Yes,

Erin: 26:28

it's true. Whenever, and this is going to tie into, and maybe this is a good segue into the main topic that, that. I found to be a topic of discussion that you brought up on our panel and tell or in our practice and we were, yes, was when we move people into memory care, the status quo of they need a week to 2 weeks of no visitors. And before we get into that, because this kind of leads into, or ties into something that you said, The validation of what's what sucks in the moment, isn't necessarily going to suck 3 weeks from now or 6 months from now

Carrie: 27:12

things change fast, especially in dementia.

Erin: 27:14

Yes. So we, the validation is and ties into the next topic. I want you to take a weekend. And feel what you need to feel. Eat what you need to eat. Exercise what you need to exercise. And come back and look at it through a fresh lens. because this does suck right now. we did have to move to a more successful environment because there's a progressive disease and you're in your loved one needs a higher level of care, but this doesn't mean that it's over. And there's still a lot more fun and joy that can happen, but you have to be ready and you have to be ready to see it.

27:56

And I

Erin: 27:57

say that because. When trauma happened, as a new mother with my son, I had to do that. Like I had to say, my life has now completely changed and I need to mourn the life that I thought I was going to have. And I told the NICU nurses, when he got his trach, I said, I can't be here because they all of a sudden he got the trach and then they were going to teach me how to start using it. And I wasn't there. I wasn't there much and I just said, I need, I won't be here for the weekend. I'm going to take this weekend and and I'm going to do nothing. I'm going to sit. I'm probably going to fry some French fries. I'm going to eat some cake, watch some Netflix, cry it all out, live in myself, pity in my misery. And then I will be back on Monday and I will be ready. To learn how to keep this kid alive. And I think when we validate people with go, we've got this feel what you need to feel, do what you need to do, and then come back, when you're ready. Then we're going to do this together, right? And that ties into we don't want to keep people away for two weeks if they don't need two weeks. We don't want to keep people away for one week if they don't need one week, but we do want to respect the journey of the resident. Yep, and the family member, because you could have a very angry resident who's going to spew a lot of hateful things to a family member. Who's just trying to do the best for someone. Right? every situation is different. And we don't want anyone to get in trouble, but we do want to talk about the nuances of that rule. yeah, take it away.

Carrie: 29:56

yeah, I mean, it's just again, like we said, you cannot blanket anything in dementia and to go in an even different way, like I just did a live with an amazing hospice nurse. She's huge online hospice nurse penny. And she, we were talking about how there needs to be a whole different protocol for dementia and hospice. it can't be the same, right? there's so many issues. And that, I think that's across the board. I think, we're still learning so much about dementia every day. We don't even know half of what we should know. And we're learning, and we have to go with the times. We have to change our policies. We have to re evaluate what we're doing. we have to question what's going on. And this was years ago now, but when I worked in Colorado, I worked at a place and the nurse would literally tell families, Oh, it's normal to stay away six to eight weeks, six to eight weeks. Yeah. Okay. If your loved one lived with you full time and then you just move them into a place and then you peace out for six to eight weeks, maybe that works for someone, but that doesn't, that sounds pretty traumatic if you ask me whether you can remember what's happening or not. And so again, that might work for someone. But we can't have, policies where okay, we actually asked the families not to come in for a while now just for, just because someone made this up in the 80s. I don't know who knows where it came from. But it's so frustrating because I've seen that be very detrimental for both parties.

31:25

Yes.

Carrie: 31:25

and that almost solidifies. I think that's the message to the family members that you don't matter. You don't need to be here anymore. Bye. We've wiped our hands clean. We got it now. No, you're a team and they're an expert on that person. You're not. You just met them and we need to have a working relationship. Like you said, take the time you need. And I love that. I would love for communities to verbalize that and say, this is tough. You are allowed to go and grieve and feel all the feelings. We got it here. And you come back. When you can come in with, maybe a fresher mindset so you can truly enjoy the moments here, but because we don't want you to associate our this new home for your loved one with negative feelings and that's normal. But we want to just. Telling them that it's okay that this is a really difficult day,

32:15

right?

Carrie: 32:16

Giving them the permission is huge and then giving them the choice, Hey, some people stay away for a little bit. You know your person best. If they are really, focused on you, I would probably come in and make sure you, they have a touch point with you. But again. your person best. So let's talk through some scenarios. I'll tell you about what I've seen with some people here. Maybe, I've had, a caregiver. She was like, oh, my mom's going to flip. We're together all the time. She's going to flip brought her in. Her mom literally goes, are you going to leave to the daughter? It was like, bye. Like she was fine. And the daughter was like heartbroken. Cause she was like, I thought she was going to be so sad. And, and it's you really don't know. and it's just, Yeah. Again, it has to be a conversation for each individual, each family. What does the family need? Maybe the family is so burnt out that they need mental and physical space. Yes. That's okay. Maybe the family wants to spend the night the first night. That's okay. I just, I think that rule really frustrates me and I was actually really happy on our panel when we asked it that many did not. Have that rule, weren't you? I was really shocked that people hadn't heard that. Yeah. So that made me happy. I'm like, oh, maybe things are changing here. Yeah. But, yeah, what do you think? I do think that it's

Erin: 33:36

probably still used, but I think that we have gotten ahead of that a little bit. But I like how you described it in the sense of, we're going to have a discussion and, here are some things that we need to look at. And as the nurse, or as the sales director, as the executive director, you're looking at. What is the emotional condition of the relationship of the family and the resident? Number 1, what is the anger of the resident and the emotional condition of the family member? And what is important? What does success look like in this move in process? And then the other step is we as professionals need to safeguard them from having a terrible move in experience and teach them how to respect their loved one by not giving them too much information that they cannot process and for them to understand that is not disrespecting them. That is actually loving them where they are. how many times do we say, okay, you're going to move into memory care. They don't get in the car. They don't get out of the car. They don't go, wonder, They can't understand it, and I just, I use that in my own life. With my son, because I learned it through work, like you cannot give him too much information because then I'm going to be hearing about it. He's going to be obsessing about it. He's not going to understand why he's so anxious about it. It is literally present in the moment is how you love.

Carrie: 35:10

That's not fair to him. and that's the thing. That's like such a mindset shift in caregiving because. I recently had someone say to me, because I like we're going to do a speaking gig and stuff. They're like, oh, we don't really believe in, talking about therapeutic fibbing or lying. I do and, it is everything to be an empathetic caregiver. I'm sorry, but I learned that the, the 1st time I really learned. How impactful safeguarding their heart is by using lies in the moment. Lies are seen as very negative in dimensions different because we are truly safeguarding their heart. And I'm not saying we're lying all the time for fun, but I'm sorry. I had a literal man that his son died 50 years prior. And all of a sudden it was in his mind that he just died. And he asked every five minutes, I am not going to tell him his son died. Every five minutes. So he can regrieve that. And it's just, it's being, it's, it truly is being empathetic. It truly is the best thing that we can do for our loved ones is meeting them where they are.

36:22

And.

Carrie: 36:24

And being respectful of what, yeah, they can process and take in and handle because quality of life is everything.

Erin: 36:33

Yes. I'm sorry, but therapeutic fibbing. okay, so I've had residents who got their suitcases packed, waiting, got their purses, waiting for their parents to come and pick them up and this is, over a course of 20 years, you're going to see the same thing over and over again. And I have seen. Where people try to orient them to reality, and that went into a tailspin. Or you just go up to them and you say, you know what? It's 2 o'clock. And your parents are still working. So they're not going to get here until after 6. we're going to spend the rest of the day, we're going to have, we're going to do some fun, then we're going to eat, and then we'll, then we'll check the time and see where they're at. That's all they wanted. they just want to feel safe. And if we tell them that their parents are not here, are they going to feel safe? Do they trust us? Because we're lying. We're lying to them because they are alive, yeah, therapeutic fibbing is, almost

Carrie: 37:27

required. I agree. And again, it's that mindset shift. If you don't know, you don't know. And it's such a negative, connotation. So of course, if you don't have an education or seen it before, you're gonna be like, that's rude. My loved one already has dementia. Now I'm lying to them all the time. Like I get it, but that's why education is so important and teaching in those moments, how to do that. That's why I love places are, making the fake bus stops. I love that. Let's go sit at the bus stop. I think that's brilliant. but yeah, we have to meet them where we are. We have to be compassionate and I sure as hope someone is lying to me one day if I need it, I'm sorry. Life is sad enough,

Erin: 38:09

Yeah.

Carrie: 38:10

It's

Erin: 38:10

true.

Carrie: 38:11

It's too much. Being a human is hard.

Erin: 38:14

Being a human is hard. that's a mention. That is my favorite quote from you, from The Dementia Darling, that being human is hard. being a parent is hard and being the quote unquote parent slash caregiver to your parent or a loved one is hard because I compare it, although I'm not at this stage just quite yet, but I compare it to, and I've said this to several family members inside the community who don't want to take full control over decision making, or who want to allow their loved one to be a part of all the decision making, which means that, you There is no forward progress or there are things that are happening that are not in the best interest of their loved one. This is where you go back to where you were a teenager and you realize that your parents We're enforcing things on to you for your own protection because you just weren't aware. Even if we didn't agree,

Carrie: 39:12

even

Erin: 39:12

if we didn't agree, and now this is what you have to do to protect them and to keep their dignity intact. Exactly.

Carrie: 39:22

Exactly. and I know it's hard. It's not fun to take blame for things, but I would probably rather have my mom really pissed off at me than her not safe, Hopefully they'll get to a point where they move forward and they don't, they're not mad anymore, but it's for their own good. And if we're old, we're doing everything out of love. And that's what I've said this in the past. I say, if you don't know what to do, you don't know how to make a decision, lead with love. What. And I know that's very broad, but start with what is the most empathetic answer to this? What is, the most person centered and empathetic, answer that I need and lead with love in that direction.

Erin: 40:03

And I've always said the same thing, but it is, you are making the decisions, the hard decisions, through the lens of dignity, respect. And love, and if you have to make a hard decision and a decision that goes against what their wishes were, or decision that you feel sad to make, you ask yourself, am I making this decision through dignity, respect? And then you can't go wrong because all you can do is your best. And I think as senior living leaders, what I hope that they get from this. and I think that's really where we're going with this conversation is how to coach someone through the tough conversations, because that's really where we're going, social media experts are doing it right, like Carrie, but we are the experts inside the communities and we need to own that and we need to lean into it and tell people how to make those decisions through those.

Carrie: 41:01

Families need you. Families need us and they're relying on us. And, they think they can, we're told to trust our doctors and we can trust our doctors and we see that they don't really understand about dementia still. And, there's so many things we're told as people in society to trust. And that's again, as I said, in the beginning, this is, that's a lot to hold as a professional and. And I get that, but that's also, we can't take this, those roles lightly and we have to make sure we're pouring into ourselves so we can show up for them the best we can. and, catering to our mental health, our staff's mental health. when it comes down to, as we said this whole time, whether it's the caregiver or the person living with dementia and you're redirecting, whatever it may be, what you said, do you need to be hugged, help or hurt? And it's the same and validating, just being like, just being human with people. We have to just be like, yes, this is so hard, but I'm here and we're going to do this. And you're not alone. And we're going to learn together and we're a team. And it's just, it's all about, like you said earlier, and I'm going to say it a thousand times, but we all just want to feel seen. We all just want to feel like we're normal. And this is. Yeah,

Erin: 42:23

so the takeaways of this conversation is being humans hard. And so when you're having those hard conversations with families, you can reference this podcast, but really carries words that says being human is hard and it's okay because this is hard is adds to the heart of being a human. This is part of the human experience, right? Yes. so use those words and then ask the questions. In this conversation, what does success look like? Do you need help? Do you need to be hugged? Or do you need to be heard?

Carrie: 42:59

You know what I mean? Exactly. Exactly. And don't be scared. This is another thing with me being, shameless. I'm not scared to say I don't know as a professional. If someone comes to you and they say, Oh, maybe I should stay away for eight weeks. And you just really don't know what to respond, say, You know what? I don't know. Let me look into what works. Maybe you don't know much about dementia education right now. Be upfront about that. And say, we'll learn together. I will do my part to learn with you. but again, being human is hard and it's okay for us to not know everything it's that's being human. So it's okay. Even as professionals to own up to that, because we're all learning, this is very difficult work. This is very intricate, heavy stuff. And it's okay to not know.

Erin: 43:48

Yeah, leading to lead with curiosity, compassion, love that. Yeah, exactly. And for you as the leader, understand that no shame is where you can be your most authentic self and where you can attract the right people to live in your community to give the experience that you want. Yeah. Take it from the pink haired, purposeful, dimension, darling,

Carrie: 44:12

Sherry Alberts. Thank you. Oh, I love this. We could talk forever, Erin. We need to do a panel, just you and me, and we'll talk forever.

Erin: 44:21

I know. We could. Thank you for joining us today. Tell everybody where we can find you because you are now out on your own. You have taken the leap. You have overcome some fear. We have half leaped into the deep end. And just so you know, being an entrepreneur is harder. I would say potentially harder than being an executive director inside of a community, but she's doing it and so tell us how to find you on all your channels so we

Carrie: 44:49

can. Yeah, thank you. Thank you. yes, please. I'm coolest on Instagram at dementia, darling. I'm also on YouTube, Facebook, tick tock threads. And LinkedIn, of course, but please follow along. I am on a mission to fight against the tragedy narrative and dementia care and show that there's joy to uplift our dementia community at large and to make sure that we all know that we are not alone in this. And so please, join me on all of those. You can join me also at my website. DementiaDarling. com. And I'm doing as Aaron said, I'm on my own now. So I'm doing a plethora of work, in many different capacities, a lot of speaking education, a lot of different partnerships with amazing companies. but, really wonderful stuff ahead. So if you would like to reach out, please DementiaDarling at gmail. com, reach out to me and I would love to partner and uplift voices together. So thanks for having me and, thank you caregivers and all the professionals out there. Everyone who's aging, and just thank you all for everything you do.

Erin: 45:51

Absolutely. And thank you for being here. And as always for my listeners aspire for more

Carrie: 45:57

for you.