Support That Independence": Unlocking Dignity & Joy for Your Loved One with Dementia

In this conversation, Elder Law Attorney Bob Mannor and Carrie Aalberts, founder of DementiaDarling.com, discuss tips and strategies for supporting individuals with dementia and their caregivers. They emphasize the importance of supporting independence and understanding the changes happening in the brain of someone with dementia.

Bob and Carrie discuss the challenges faced by family caregivers and the need for dementia-focused care. They both highlight the importance of effective communication and understanding the emotions of individuals with dementia.

Carrie shares her personal experience with her grandmother's dementia and her journey in the field of gerontology. They also discuss the concept of dementia villages, such as Hagevik in the Netherlands, where individuals with dementia can live independently with the support of professional caregivers.

They also discuss the challenges of making decisions for a loved one with dementia and offer suggestions for addressing these challenges. They highlight the need for education, resources, and support for caregivers and individuals with dementia. The conversation concludes with a reminder to meet individuals with dementia where they are and to practice self-care as a caregiver.

Episode Highlights 

• Dementia caregivers often feel isolated and need a safe place for support and resources.
• Effective communication with individuals with dementia involves using concise and clear language and focusing on emotions.
• Preparing for the last stage of life, including dementia care, is essential but often overlooked.
• Dementia villages, like Hagevik in the Netherlands, provide a community for individuals with dementia to live independently with professional caregiver support. Supporting independence is crucial for individuals with dementia.
• Understanding the changes happening in the brain of someone with dementia can help caregivers provide better care.
• Accessing education, resources, and support is essential for both caregivers and individuals with dementia.
• Meeting individuals with dementia where they are and practicing self-care are important aspects of caregiving.

Host: Attorney Bob Mannor
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Chapters

• 0:00 Navigating Dementia Care and Advocacy
• 13:41 Supporting Independence in Dementia Care
• 22:09 Difficult Decisions in Dementia Care
• 33:41 Caregiver Self-Care and Perspective in Dementia

Transcript

Carrie Aalberts: 0:00

You're listening to Advice from your Advocates, a show where we provide elder law advice to professionals who work with the elderly and their families.

Attorney Bob Mannor: 0:10

Welcome back to Advice from your Advocates. I'm Bob Manor. I'm a certified elder law attorney in Michigan and I've been looking forward to this podcast. This is going to be a really interesting one. So we've got Carrie Alberts. She's an educator and advocate for dementia issues and she has a really interesting social media presence and website called Dementia Darling. So Keri welcome.

Carrie Aalberts: 0:33

Thank you so much for having me. It's an honor to be here and talk.

Attorney Bob Mannor: 0:37

So tell us about the work that you do through DementiaDarlingcom.

Carrie Aalberts: 0:41

Yeah, I have been on social media under the persona dementia darling for almost five years. In October it'll be five years and I wanted to create a safe place for dementia caregivers and, of course, all caregivers are welcome but I specifically work with dementia caregivers and I consistently in my journey found that dementia caregivers felt very isolated. Consistently in my journey, found that dementia caregivers felt very isolated and I wanted to have a place that was a safe place for them to feel seen, to find resources and truly to give them a virtual hug and say you're doing amazing and you're not alone in this and really help build community for them. So that's what I've done and now I'm full-time. Dementia darling, 24-7, is my job.

Attorney Bob Mannor: 1:28

That's great. You know it's interesting you talk about that, that it can be for any caregiver, and you know we have the same thing. So we, for the last few years, we've been saying we're a dementia-focused law practice and the way we came to that was that you know, I help a lot of people with long-term care and finding the right long-term care, making sure that we're advocating for good care, finding ways to pay for it, all those types of things. But the bottom line was, after a while, we realized that a good percentage probably 75% or more of the families that we're helping were dealing with someone with dementia, and so once we realized that, we said, well, maybe we should say that and say that this is a lot of the people that are going to be struggling that this have a family member with dementia, and that complicates things right.

Carrie Aalberts: 2:12

Yes, yes, and we don't see that in society enough. We don't see dementia out there, and so that means the world that you guys were able to tap into that and see the need. And now you make people feel seen by that and I just appreciate you because, like you said, it's such a difficult journey to navigate. I mean, aging is difficult to navigate in general, being a human is difficult to navigate in general. Now let's throw on top dementia, right, and all that comes with that. So, yes, having supportive professionals that really truly understand the struggle is a game changer during the journey.

Attorney Bob Mannor: 2:49

I really appreciate the education and you know the way that you do it, where you're getting out into social media and you're getting you know kind of the message out. This is very difficult for families to navigate. So if you know some of the a lot of the caregivers, I'm sure that you work with our family caregivers. So of course there's going to be some paid professional caregivers, but a lot of them are the family caregivers and this is so strange for them because the person that they're caregiving for you know their dad or their mom or their spouse or their grandparent or whatever, and sometimes it's really hard to separate the previous relationship from this new relationship and just supporting them and educating them about you know the best way to deal with different behaviors, different you know, things that come up.

Attorney Bob Mannor: 3:37

That, I think, is great and I love how you do it, that you're getting out. It's not just you have to go to this lecture in some lecture hall. You're getting out to the real folks and real people and getting this information out.

Carrie Aalberts: 3:47

We don't have time for that right. We don't have time to go, sit in a day training and find respite for our loved one and get there and all the things or whatever. Yes, I try to make it really digestible and it's confusing for me and I've been in it for 12 years and have a master of science degree focused in it and still is hard and I'm still learning every day.

Carrie Aalberts: 4:07

It is a completely new world specifically dealing with dementia, and people need that support, and we don't know until we know. So if you can, you know, watch a tick tock for 30 seconds once a day and learn something that could really, you know, help you in your day to day life. Caring for someone, man, that's a win, so yeah.

Attorney Bob Mannor: 4:29

Yeah, and you know, lawyers are known for being too wordy and using big words and talking too long and all that, and that's something that we've had to learn. So we have a TikTok page that we, you know, has gone viral a few times, and what? We learned, but you got to get right to the point.

Carrie Aalberts: 4:45

You really have to get information out there an entertaining but short, easy to understand way, and that's what you do with the dementia education, which is great, I'll tell you, though it's very difficult for me and you're right, and that's actually how you should communicate in dementia care too.

Carrie Aalberts: 5:01

You keep it really concise and to the point and clear. Less words the better, and I'm someone who I always joke. I said they hated my elders hated me because I was too loud, I talked too fast and I do all the words. So they're, you know, they're like, oh my gosh, get this girl away from me. So I have to be very conscious of you know, an intentional when I am, you know, doing that.

Attorney Bob Mannor: 5:23

Well, and I was reading about this the other day and I'll see if you agree with that you know a lot of the words. So if someone is experiencing dementia, and a lot of times the caregiver, the family or even the professional might be trying to communicate something with them and my what I was reading in my personal experiences. They might not be able to remember those words but they can remember sort of the feeling they had when you had those words. So if you're confusing them or overwhelming them, that's the feeling they have.

Attorney Bob Mannor: 5:52

If you get to the point of the issue and dealing with it in a in a way that they can understand sort of the emotions of the situation. I think that that is a much more effective communication.

Carrie Aalberts: 6:02

You are spot on. They they will take whatever we bring. They take that on right. So you have to really go into it with the right energy. And I say to caregivers you're allowed to be in a place where you don't think you should be around them at that moment. You're allowed to step away and take a breath, because that is fair.

Carrie Aalberts: 6:23

You are human and you can't always be on and perfect and all the things and happy and we're going potty. You know we can't always do that and it's hard because it does make or break a situation. Dementia care, as you were saying, you know, feeding off their energy. You know they might not remember you your name, but they'll remember how you make them feel and they will. You know you your name, but they'll remember how you make them feel and they will, you know if you. You know it's so hard when someone has, like a negative, you know, experience with someone and that just sticks with them and then they kind of become scared of that person.

Carrie Aalberts: 6:53

That can happen a lot in professional care, you know, and things like that. So, yes, it's very important.

Attorney Bob Mannor: 6:59

So I'd like to know. I know a little bit because I've done my research and I've been following you for a bit now but I'd like our listeners to know a little bit more about you, and how did you get into this? What was your own personal experience? Things like that.

Carrie Aalberts: 7:13

Yeah, thank you for asking. Well, so you'll like this. So my dad is actually a real estate and so he was a real estate lawyer and then a business law and ethics professor his whole career UNLV in Penn State, and so that was my life. So when you said, yes, lawyers like to use big words, I'm like, yeah, I grew up in a home like that was living with dementia my dad's mom and she unfortunately passed away from dementia when I was 13. So please keep in mind, I was young, didn't know what was going on. I was like what is going on with grandma? She's acting so strange, you know no education around it, but I could see my dad through those years as her main family caregiver, who is a lawyer, who is a smart guy not knowing what to do not knowing how to navigate the system it's.

Carrie Aalberts: 8:09

It is not easy for anyone. Um, and and I even talked to, I just talked with a doctor. She's a, she's a gerontologist and she's like, now that it's my dad, like Jerry a gerophysician sorry, she's full ball doctor in this and she's like, now that it's my dad, everything's gone out the window. So that's another thing too, it's hard when it's your family right Absolutely true.

Carrie Aalberts: 8:29

Right, and so I watched him navigate this and he did an amazing job. But it was really hard. He was on his own, he was doing this and I'm just so glad to see that there are things available now and there's more talking about it. Still such a long way to go, but I didn't ever understand. I just know it was very stressful for my father.

Carrie Aalberts: 8:48

It was a hard time for my dad and it definitely was affecting the family, watching my grandma progress and her birthday was on Christmas Day. So you know it's like every Christmas. You know, during my teenage years it was like watching her kind of just progress into this disease and not being able to engage with us on the big holiday and her birthday and I just remember that so vividly. But I'm so grateful for the time we had with her and what I learned through it. But that always stuck with me and I was able to go to a college that had a program in gerontology, the study of aging. So I was like, sign me up. So I have my bachelor and master's degrees focused in gerontology, the study of aging and family studies as a whole and just the progression of being a human across the lifespan. And I just I fell in love.

Carrie Aalberts: 9:41

During my time in my internships I started and I stayed there my whole college career at an intergenerational adult daycare center. So there was little kids, preschool and then the elders with dementia, mainly in the other end, and we would meet twice a day for snacks and it was just, it filled your soul and that solidified my passion. And then I, you know, went through and worked in senior living, worked in nonprofits. I ended during COVID in as a director of an adult daycare center out here in Vegas where I live and ended up getting really burnt out and so I switched over to the age tech world. I went to the age tech engagement kind of sector of senior living and finding really cool tech that keeps people happy and gives them, you know, fun things to do.

Carrie Aalberts: 10:35

And through that time I've really learned a lot about the different things that are being made for people living with dementia, the types of play that are available for people living with dementia. People living with dementia, like a fun fact, there's like 22 different types of play that you and I can enjoy in life, but people living with dementia can only experience about three types of play. So it's really, you know, learning how to meet your person where they're at. But yeah, all through this time doing dementia darling and just trying to build up a safe place and resources and all the things that was really long, but I uh you know, I tried to um just keep learning and and share uh all that I've learned along the way um with caregivers, because every single day there's new people coming on this journey.

Carrie Aalberts: 11:16

We have over uh 53 million family caregivers unpaid caregivers in the U S Wow.

Attorney Bob Mannor: 11:22

Wow, yeah, no, and you know it's interesting, the dynamics of what's coming along, and you know this is something that's not going to go away and I don't think that we've done a very good job of preparing families for this stage of Not at all One of the things I always say, and this is going to sound depressing, but it's just real and I like people to just acknowledge it. So there's three possible futures. You're going to either, you know, live a really long life and and never really have any serious illness and die peacefully in your sleep and that does happen, but it's very rare.

Attorney Bob Mannor: 12:00

Yeah, option two is you could die young and that's not so good. And option three is you're probably going to have some period of time before you die that you're going to be dependent on other people and we just don't prepare for that time period and families don't wrap their head around that idea, and it's something that I think that you know. I guess previous generations didn't have to deal with this much because people died younger, things like that.

Attorney Bob Mannor: 12:23

But I really think that you know there's so much about you know preparing for different stages in your life, preparing for having children, preparing for getting married, preparing for retiring, and then we have this important last stage of life that everybody just kind of looks right through and imagines it doesn't exist. And so I really what you're doing and educating folks about the reality of this. Tell us a little bit more of how people might be able to engage with Dementia Darling. There's different resources through social media, but what else can they do to engage?

Carrie Aalberts: 12:56

Well, I'm definitely coolest on Instagram and that's where I post the most, but at Dementia Darling on there. And then you know Facebook, tiktok, all the things, linkedin, but yeah, I have. At Dementia Darling on there, and then you know Facebook, tiktok, all the things, linkedin. But yeah, I have a DementiaDarlingcom and I try to, you know, put up resources.

Carrie Aalberts: 13:11

And then, if you want to join my, mailing list on there I send out, you know resources and different things that I learn about and I I try to share as much as possible everything that's out there for caregivers, all the free things, all the amazing resources and companies and people that are popping up. So, yeah, my website, for sure, and I also have a podcast called Gather Darlings with my amazing bestie that's also in the aging industry and is amazing at what she does. Yeah, and it's going to be fun, definitely follow. I'm heading next month for a month away in Europe for work and doing some international speaking and spending the day at the first ever dementia village.

Carrie Aalberts: 13:52

Oh my goodness.

Attorney Bob Mannor: 13:54

Yeah, right outside of Amsterdam. Yeah, it's in.

Carrie Aalberts: 13:56

Weeps, netherlands, and I have a day study there and we're podcasting live from there. So, definitely follow along. We want to bring back as four of us professionals and talk about how we can recreate it here or not, or what's the possibilities.

Attorney Bob Mannor: 14:10

I want you to talk a little bit more about that. I'm actually also going to the Dementia Village in Amsterdam next May, so tell our listeners a little bit more about that, because it's a really interesting concept.

Carrie Aalberts: 14:25

I'm so glad you're going. This is a dream of mine. I've been studying it since I was 19 and I can't believe I get to go. So the dementia village, hogvik, which I have learned since I have, you know, gotten ready to go over there is that they don't like being called a village. They actually don't want to be called a village, and so that's something we're going to learn more about and how to maybe change the vocabulary in the US. But a US publication dubbed them that and it got it stuck and they didn't have any say.

Attorney Bob Mannor: 14:58

So they want to be Hogovic.

Carrie Aalberts: 14:59

That's it. It doesn't mean anything.

Carrie Aalberts: 15:01

So that was something new to me and they are a place where it's literally a community for people living with dementia to live in, where it's their own town, so they can live independently and autonomously. But the people in the town are all caregivers, so it's these professional caregivers around. They're there, you know, for any help that is needed. But people actually get to go outside and go to the market and do things for themselves and have that independence. And I did see a stat and I want to look more into it. But someone said this to me and I was like what they said? They did a study and like it's, people living at Haguevik lived five times longer or something.

Carrie Aalberts: 15:41

I don't know, so I need to look more into it, but it's something to say about independence or having autonomy as long as possible in your progression, and it's about quality of life.

Attorney Bob Mannor: 15:52

And.

Carrie Aalberts: 15:52

I think that is the most incredible vision for what it should be for people, but there's a reason why we don't see it anywhere else. So what is that? So I will hopefully find that out.

Attorney Bob Mannor: 16:03

Yeah, no, very interesting. We had a guest on the podcast a few months ago that they're part of an organization that does therapies for people with neurodegenerative disorders, including dementia, and his thought and something that he expressed was a lot of families, when they get this diagnosis of dementia, they kind of cocoon and they don't. They don't they.

Attorney Bob Mannor: 16:28

You know they just kind of hide in the house and then they're not getting those services, and he was expressing how there are a number of things to make life better, make life more livable for both the person with dementia and the family and a lot of families just kind of close in and that in, and that he was saying the same thing as you, that it actually probably shortens their life and the shorter period of life is less livable, meaning it's. You know, when we can have more things that can make it easier and make it easier for the family, not only can they extend their life, but it can extend their life in a much more enjoyable fashion, both for the person and their family.

Carrie Aalberts: 17:08

Absolutely Something. An example of this and just on a really specific level and just to go deeper into that when we do things for people, just if they're aging, living with dementia, whatever we do things for them before they need help with those things yes we take away that, those abilities, from them.

Carrie Aalberts: 17:27

So, for example, I worked in a senior living community where we were so short-staffed surprise, surprise and it was we couldn't walk people. You know well, I was in activities, I watched this, not that I'm like not taking blame or anything, but this is how it was and we, we would see people be put in wheelchairs instead of taking the time to walk them to dinner. And then eventually, they lost the ability to walk faster because we didn't give them the opportunity to walk.

Carrie Aalberts: 17:53

So not giving people the opportunity to do things actually takes away their autonomy. So helpful for caregivers. Support that independence. That's less for you to do at this moment. We want to support independence. If you have to cue them, start the process, that's fine, but don't take away everything you know. Start with verbal cuing before you go into physical cuing. All those types of things help.

Attorney Bob Mannor: 18:15

Yeah, that's a good tip. Actually, I'm going to ask you to give us a few more tips. So, for example, a family that you know, we see this all the time, whether it's a parent or a spouse, but sometimes it's a matter well, let's go with. I'll give you two examples and we'll take them one at a time. One is you know, george is just being stubborn, or Alice has, you know, she's just, she's just, you know, being ornery, or whatever you know, and that they because there's sort of all of the history of before they had dementia. Sometimes the somebody really close is having a hard time accepting that this isn't just somebody being grumpy, right.

Carrie Aalberts: 18:55

Yes, and it's. That's why, truly, one of the acts of self-care for a caregiver is to learn about your loved one's disease, because the more we know, the better we can separate our loved one from what is happening. And you know, understanding what is happening in their brain is a game changer for a caregiver, because it takes away that. Are they doing this on purpose, are they? Are they trying to piss me off?

Carrie Aalberts: 19:23

And it's like they literally do not have that ability anymore and that's so hard to understand and it's heartbreaking, right? You don't want to want to understand that, your loved one, their brain has deteriorated to a point where they cannot process things they have always been able to. So yeah, for example, yeah, they're being stubborn, they don't want to eat no. Part of their brain probably has gone to the point where they don't know what to do with a spoon.

Carrie Aalberts: 19:54

So, we want to put that spoon in the cereal and that could be enough to cue them and okay, and fill in that blank. But it's so hard because everyone's so different. With their dementia, as we know, every person is unique. Every person's progression is different. Not everyone, you know, will will experience the same things, but it's that I see that all the time, especially in the beginning and mid stages when you're just when people just think they're doing it on purpose and that makes it so hard, and then the guilt on the person. It makes them want to isolate more, because then they feel like they're doing stuff. That's wrong too. But yeah, it's really about understanding the deficiencies in the brain that are happening. What parts of the brain are being affected and, unfortunately, you know the logical thinking and you know being able to process different things. They have to do different tasks. Confabulation is something where you know your brain literally has like some memories, but then part of your brain doesn't, so it just makes up stuff and fills in the blanks.

Carrie Aalberts: 20:57

And so people say they're lying and it's like no, because their brain told them that's correct. They're not trying to lie. They like, for example, I had a gentleman that always thought he he went to space every morning and but it was like it was because his TV like he would always fall asleep to like the space channel.

Attorney Bob Mannor: 21:15

or I don't know what it was.

Carrie Aalberts: 21:16

But he would wake up with this space picture, and so it made sense. His, his brain put that together as oh, he was in space, so something made sense there. So we have to look at the full picture and realize it is not on purpose.

Attorney Bob Mannor: 21:30

Their brain is trying the best that it can to make up for things yeah, no, it's always interesting how the brain works, and I think there's a whole lot about the brain that we don't understand but it's definitely always trying to figure something out, even when it doesn't have the resource, it doesn't have the short-term memory of the resources it's trying trying to figure out something to put some make sense of everything so it's amazing what it can do.

Carrie Aalberts: 21:55

it really is fascinating when you can like pull yourself apart from the personal aspect or just like. This is fascinating, it really is, yeah.

Attorney Bob Mannor: 22:04

You know, it's heartbreaking, but it also can be fascinating if you really think about it from that kind of the distance there. But I have another question that might be helpful for families. That's somewhat similar, but this is particularly and it sometimes is between spouses, but often it's a child, and I think most children, you know they grew up they never thought or imagined that they would be making decisions for their parent without their parent agreeing to those decisions. And so here's what I see all the time the child using logic to try to convince them of something. Or just you know, and in my experience, often they can right, we can talk about okay, well, this is really important. You know, you can't be driving anymore because it's unsafe, it could hurt other people, it could hurt you.

Attorney Bob Mannor: 22:55

Hey, we need to look at bringing in a caregiver or something like that, because you know, remember when you fell back a few months ago, or and there's lots of logic that we can use and when I? The problem I see with that is, you know, two things Number one is the ability to have that logical reasoning or executive decision making. But the second thing, even if they can put that together and say, yeah, I see, I guess you're right. They're not going to remember that the next day. So there's this constant every day, trying to convince them of something that is not going to stick. And so how do you address, how do you help families that are dealing with that need or that concern?

Carrie Aalberts: 23:33

Oh, it's so hard. And one thing I just want to say about yes, it doesn't always work Sometimes, oh my gosh, yes it does. That's awesome If you can say the safety aspect and that works great. You know it's so hard to because, like you said, you can't reason. You never reason with someone living with dementia. You're never going to win, you're just going to be frustrated because literally their brain cannot reason anymore. That's not something that is available to them, like you said. So this is really hard and that's where improv skills and your creativity comes into play. And unfortunately, there's really not a blanketed statement because I can say you leave a note out to remind them. Some people don't get to a point where they can't read, or they they just won't read it, or you know I've also had, you know where, families that have had to take out the engine.

Attorney Bob Mannor: 24:23

So they want to go.

Carrie Aalberts: 24:24

And then the man figured out how to put the engine back in.

Attorney Bob Mannor: 24:27

He got down the road it was brilliant.

Carrie Aalberts: 24:29

I mean I was impressed, but it was very scary. So you know it's. It's so hard because you have to know your person and so I think you know if there's a way that you can say you know, we have, you have vouchers for Uber and we need to use them and you have that out or something where you have, you know there has to be that consistent incentive that works for them.

Carrie Aalberts: 24:51

And that needs to be very visible, if you know. But unfortunately something that is hard to get around is that repetitiveness. It's usually coming from part of them that just has that needs control and they don't have control, so you can't really redirect it. Sometimes you honestly have to wait it out until it is forgotten about. I don't have like a foolproof thing for that, because it's just so hard. But yeah, not having the keys visible, you know where they would hang usually don't have those things readily visible.

Carrie Aalberts: 25:22

If they really let, if you think maybe something's triggering that you know to ask about the car, maybe they see the purse out or your coat out put everything that's like travel things away, put anything that might indicate you're going in the car away. So it's not a thought, hopefully, but it's so individual it's so hard, but yeah, the repetitiveness.

Carrie Aalberts: 25:46

I wish there was like a good tip, but finding the main source of where that's coming from, and we would know in this it's not having their car. So I'm trying to, you know, replace it with something that we can't. Replace it with another vehicle, but something else to focus on that they care about can be a nice replacement, but it's so hard.

Attorney Bob Mannor: 26:08

It is hard and one of the things I think that's hard for the children is sometimes you just have to make a decision Like the car's not going to be at the house, or make decisions of we're going to have a decision like the car's not going to be at the house, or make decisions of we're going to have a caregiver or we're going to look at a care setting that is safe and that there is no convincing dad that this is the right choice or convincing mom that this is the right choice, because you might be able to do it, but it won't stick necessarily, and so sometimes you have to dab that uncomfortable thing of we're going to have to make a decision because we're never going to be able to convince dad every day that he shouldn't be driving.

Attorney Bob Mannor: 26:45

So the decision is we're going to remove the car from the house. It's not going to be there, it's not an option, those types of things.

Carrie Aalberts: 26:51

I say all the time you're going to have to be the bad guy. And when you can let someone else be the bad guy, like the lawyer, like the DMV person, whoever the doctor, get them in on it, Because the caregiver, you know, takes the brunt of everything you know what. At the end of the day, I'd rather my mom hate me for a little bit than her hit someone in the car.

Carrie Aalberts: 27:14

Yeah, exactly, and so you have to be the bad guy. It doesn't make you the bad guy, it actually makes you the good guy, but you're the bad guy in their eyes, but you're the good guy keeping them safe. And I never and I'm never like saying they're the same at all. You know parents and you know taking care of children. It's not the same at all. But just like when my parents didn't let me go to that dangerous party when I was teenage and I was pissed off about it and but it was.

Carrie Aalberts: 27:38

You know, later on I'm so glad I didn't go because the cops came and I wasn't. You know what I'm saying? Like we need to think about they would do that for us. So we need to do that for them because they literally cannot make that decision safely anymore.

Attorney Bob Mannor: 27:51

So you know one of the things that, partly through COVID but partly just how things have developed there's so much more opportunity to get good information and get resources.

Attorney Bob Mannor: 28:04

So you know it's nice to have a local support group or you know things like that. But it's nice to have you know, like Dementia, darling and things like that, where you can get information. And, like you said, you're going to be over in Europe doing some teaching and such and the nice thing is you don't have to have, you don't have to get all of your resources locally. So there's great information.

Attorney Bob Mannor: 28:24

There's great people in this industry that are trying to help folks and, just you know, have even just sort of society understand this a little bit better. And now I think there's an even more opportunity since COVID of realizing that, just because you're in Nevada and we're here in Michigan, your advice is still as good as ours.

Carrie Aalberts: 28:43

Yeah, no, it blows my mind. You know, I see where people are from on my website and, like yesterday, India, Africa, you know just everywhere. And it's like dementia doesn't discriminate. You know, I have celebrities asking me the same questions in my. Dms. Everyone, everyone's seeking help and I really truly learned the most from following family caregivers.

Carrie Aalberts: 29:09

There are so many amazing family caregivers showing day-to-day life in real, raw form on social media and they're incredible. Highly recommend finding people. And, like you said, there's so many great support groups there's and you can find a lot of people say, oh, I don't like support groups, I didn't see myself in them. Find a specific support group. You know there's the hilarity for charity Seth Rogan and his wife have. I work with them and they're incredible and they have specific, you know, millennial support groups, male caregiver support groups, black caregiver support groups. I mean the best and you can find your people. Do not give up. I know it's hard in another job you have to do, but it's worth every second.

Attorney Bob Mannor: 29:52

Yeah, I agree with you entirely, it's. It's interesting. You talk about the different people that follow your website and follow your things. I think, uh, when we were looking at our statistics of who's downloading our podcast advice from your advocates, the second biggest uh country was germany, and we're not quite sure why, but behind the heads germany is the second. We're very popular so interesting yeah that is so interesting.

Carrie Aalberts: 30:17

I know the biggest city after LA for me that follows me is Lagos.

Attorney Bob Mannor: 30:22

Oh, interesting.

Carrie Aalberts: 30:23

Wow, I hope I'm saying it right, but I'm like okay, I'm like that's random, so yeah, you never know, you never know who you're helping to you.

Attorney Bob Mannor: 30:42

You have some really great options and just I really like the short education opportunities and getting it out to people in ways that are non-threatening and that they don't have to commit to more than a couple minutes. So I appreciate everything that you do.

Carrie Aalberts: 30:54

Thank you. Same to you. We need more elder law attorneys. We need more elder law specifics. I mean, people are so lost out there and get taken advantage of every day. You know, being able to find people that have this expertise and that actually care about this specific group is really special, so thank you.

Attorney Bob Mannor: 31:15

Yeah, and that's very true. You know, it's one of those things where there's lots of attorneys. Actually, it's one of those things where there's lots of attorneys Actually it's a pretty small group of attorneys that even do anything related to long-term care and. Medicaid and veterans benefits and things like that. But the standard is the lawyers are just doing the legal part or helping with the financial part or things like that, and the reality, when you get into this, is there's more to it. There's more, you know, there's a need for advocacy.

Attorney Bob Mannor: 31:42

There's need for assistance to the maze of long-term care of how to get to care. And so that's where there's a small, much smaller group of us that look at it as more of a holistic practice, where we're looking at not just the money, not just the legal documents, but also, you know, looking at the big picture and just trying to get the best results, best family quality of life that you can get.

Carrie Aalberts: 32:06

So we need more of you. I mean, so many people don't know where to turn. I'm sure, as you know, they turn to someone or find someone too late. Sometimes with certain things, with dementia care, that can make it really really, really difficult, and it's, you know, as people are going through this is often the hardest time of their lives, and so to find professionals along the journey that have just just see you is huge. Yeah, and cater to that yeah.

Attorney Bob Mannor: 32:35

Final thoughts or final tips you want to give our listeners.

Carrie Aalberts: 32:39

I we kind of touched on it with the energy a little bit but meet your people where they are, meet your loved ones where they are. It's. I know it's easier said than done, but I like to just say this as because it's helped a lot of people. You know, I often have, you know, family members. Let's say we often see daughters caring for parents, right, and let's say, often here you know a daughter say, oh, my mom thinks I'm her mom now.

Attorney Bob Mannor: 33:04

Right.

Carrie Aalberts: 33:04

Or I'm her sister or her grandma, and that's really hard, heck. Yeah, that's hard, valid, that is heartbreaking. But I want you to think of it like this Wow, your mom is in a place in her head first off, where you're not born yet. Now, your mom is in a place in her head first off where you're not born yet.

Attorney Bob Mannor: 33:20

Just so you know.

Carrie Aalberts: 33:20

So that's first off, like she's reverted back in her brain to where maybe she was at home and she just sees her sister and her mom now, or maybe she lives with grandma, what have it be. But you weren't in that timeline yet. So one, don't take it personally in that sense, if you can look at it that way. And then two, how cool is it that?

Carrie Aalberts: 33:44

you're her safe space, now that she sees you as that loved one from that other time period. How cool that you're her safe space, that now you're her mom, she loves her mom and she's now seeing you as that loved one. And so to look at it in that way and to be like, wow, I'm still her person, even though I might not be called the same name, I'm still that person she sees as her safety net, and I think that's a beautiful thing and it's just with the fact of seeing you know oh, I wasn't even part of that timeline for her yet is a really big aha for people. I think too, in the sense, that it's not that she forgot you necessarily. She's literally back in time.

Carrie Aalberts: 34:19

You know what I'm saying so it's a whole different kind of way to look at that. So I like to leave people with that kind of just to think about, but also know that you're valid and that this is the hardest thing ever. And please give yourself grace when guilt comes on, when the grief is too rough, when you feel like you're hitting your burnout point. Please, you know, please, please care for yourself, because if something happens to you, you know what's going to happen to the people that you care for too, so we have to make sure we're caring for yourself. That is an act of love to the people you're caring for when you care for yourself.

Attorney Bob Mannor: 34:56

Absolutely Very well said. Well, thank you, carrie from Demented Darling. Thank you and this has been Advice from your Advocates. If you enjoyed this podcast and you want to know when we have future ones, feel free to subscribe to Advice from your Advocates on any of the podcast places that you listen to a podcast, or you can go to our website at manorlawgroupcom.