Spotlight on Care: Alzheimer's Caregiving

Wandering with Erin Light, MA

November 10, 2022 UCI MIND Season 1 Episode 27
Spotlight on Care: Alzheimer's Caregiving
Wandering with Erin Light, MA
Show Notes Transcript

Erin Light, MA, is a gerontologist and a senior administrator at Silverado Senior Living, a memory care company based in Southern California. She joins Steve and Virginia to discuss how to manage wandering in a loved one with dementia. Erin begins by giving an overview of what wandering is and provides some early signs to look out for. She also discusses what precautions caregivers should take to help keep their loved ones who wander, safe.



Wandering with Erin Light

Intro 00:06

From the University of California, Irvine, this is UCI MINDs, spotlight on care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's, and other dementias. 

Steve: 00:24

Welcome to another episode of spotlight on care. We're very excited to welcome Erin light to our podcast service. And she'll be talking a little bit more about a pretty interesting topic called wandering, and her experiences and what she's done with it. Before we get started, maybe we'll tell a little bit on our own experience of wandering. And then I'll introduce Erin, who's got a really incredible background in this whole field.

 

Virginia 00:54

Thanks for coming, Erin. 

 

Erin 00:55

Thanks for having me. 

 

Virginia 00:57

You know, my mom was not a wanderer. And for that I was very thankful she was at a community. And they had them there, there was a woman who slipped out the front door, and it took them several hours to find her. And then she got down to memory care where it was locked. And there was a man who was bound and determined to get out, and he broke the lock several times. So I was happy mom was not a wanderer, especially before I placed her in a community. But it'll be interesting to hear what you have to say today.

 

Steve: 01:38

Yeah, and I'll just piggyback a little bit on that, Patti. I never really thought about her as a wanderer, although I always had this experience that she would, I would give her money, and then she would go up to the Circle K. And then she would buy things at the Circle K and come back with ones. And so every couple of weeks, I was giving her like four or 5 20s. And she would have like 10 ones left. And I found out that she would go up there and buy little bottles of wine, and then store them all over our house to hopefully find I guess on another occasion, I did have a bad experience with her wandering. She took off and we had had a little disagreement. And she walked and she started heading from where we lived in to San Juan Capistrano. And we couldn't find her in the neighborhood. I had all my neighbors out looking for it was dusk. And eventually, the police saw her walking kind of looking around and stopped her. She was wearing a bracelet, which I think you're going to talk about. So they knew what to call they called and have they brought her back. So it's only about a half an hour, but the longest half an hour in my life. So anyway, it's it's a challenge. So again, Erin light is here. She is a senior administrator, with Silverado, which is an organization that specializes in memory care. So she's got some real interesting experiences working for them. She manages two of their properties. And but she's also been involved in this whole field for some time. Erin got her bachelor's degree from UCSD the University of California, San Diego. Not as good as UCI but close anyway, in cognitive science. So she really started in her field in that area. She has a master's degree. And she got that and I forgotten where that was from 

 

 

Erin 03:38

USC. 

 

Steve 03:39

Oh, yeah, im not supposed to mention that name, being an Oregon duck we don't talk about USC. Anyway, she also has some experience in the VA hospital. So she's got a really varied background in dealing with individuals and challenging issues that they might have. So welcome. Erin, thank you so much for coming.

 

Erin 03:59

Thanks for having me.

 

Steve 04:00

Oh, it's our pleasure. So what got you started in this whole field? What What was the magic that made you decide to get involved?

 

Erin 04:07

You know, I was in high school, and I just found out my grandma was diagnosed with dementia. And I wanted to go see her because I knew the disease was progressive. And that was pretty much all I knew about it. So I went with my father and she could say that she knew she had a son named Stacy, that's my dad's name. But she couldn't put together that he was standing right in front of her. She didn't recognize him. And I thought, why on earth, what happens in the brain that makes somebody not recognize their own flesh and blood? So that kind of started me off. On my journey. I was a caregiver for quite a few family members as well. I've been in healthcare over 11 years, and I really enjoyed my time at the VA hospital. I was in a memory lab with Dr. Larry Squire, who was a very prominent neuroscientist in that field in San Diego. And I decided it wasn't hands on enough for me just to go and do cognitive testing for veterans and then have them go home, at the end of the day, I didn't feel like I could make a big enough impact. So that's when I found Lauren in my graduate research and worked for Silverado and USC for a while and then joined the company. And I've been here ever since for about eight years so far. 

 

Steve 05:21

Well, Erin, you know, it's interesting how many of us have been touched by the disease, and been touched by it kind of somewhat sends us on a path related to how to help others with the disease. So that's a nice calling on your part. Let's start with kind of some basic information about what is wandering, how frequent Do you see it as an issue? Does it occur earlier or later in the evolution of the disease? Kind of just give us a little overview of wandering? 

 

Erin 05:49

Sure, absolutely. Yeah, it's very common occurrence. For older adults, it's sometimes it's called a behavior, I sometimes see it more of an instinct or this self propulsion of restlessness. Sometimes it can be very direct from something specifically, they're looking for someone or something. Or they could just be trying to make sense of their environment, their their brains, not notifying them, this is a familiar environment for them. And they're going to try and find somewhere that matches up with the memories that are still working for them. It's it's very frequent, I think, up to 60% of individuals who experience memory decline, at some point during their journey will experience wandering, although it comes at all stages of the disease process. Sometimes, even when the resident can no longer verbalize what they're looking for. So you'll see it very early on. A lot of times, we hear stories of families who, the residents parked somewhere, and they're trying to walk home because they forgot they had their car, or they'll find them in the store next door, when they were just at the restaurant with their wife and just ended up in the restroom and didn't remember they were with their family. So it it's a very scary, as you've experienced, and I look forward to discussing more about it today.

 

Steve: 07:10

Great. That's terrific. That's a great overview. So what are the reasons for wandering? What kind of causes it what Yeah,

 

Erin 07:20

I we talked about some of them, it's it's still very unknown, there's still a lot of research going on about wandering, but in general, trying to wander due to confusion again, so if the brain is deteriorating, it's not connecting reality to whatever an individual's reality is. They could be trying to find something or someone we often see older adults who are more in the middle stages looking for a child that could be very young, when their actual children are adults in their 40s and 50s. And trying to convince them like, Hey, Mom, it's me. I'm the child you're looking for.

 

Steve: 07:57

So sometimes it's back in time for this. They're going back in time looking for things.

 

Erin: 08:01

Yeah, absolutely. They could be trying to escape a real or perceived threat. So something that is scaring them that may not be scary to us, like a sound, or just something that's overloading their senses. They could be following a routine they’ve had for decades, we had a gentleman at one of our communities who would wander all through the night and we found out he was a night guard. And so we gave him a clipboard and a and a hat and told him he was on patrol. And he did phenomenal. He was right back at work. But his wandering was stemming from his decades long work that made very logical sense to what he was trying to try to do.

 

 

 

Steve: 08:43

Interesting story there, how it's all kind of related to what what you had in the back and in your background? What is what should we as caregivers look at wandering? Or how should we look at it? I've heard these two terms, goal drivers versus disease drivers. But maybe you can just talk about, you know, how should we respond to wandering as caregivers? 

 

Erin: 09:06

Sure. I think sometimes trying to figure out if basic needs are met first. You know, Maslow's hierarchy of needs. We're trying to look for safety. We're trying to look for food, shelter. So if those needs are met, something else is coming along. So the goal that you talked about, it could be wanting to go home, they might be at home, but maybe it's an apartment they've only lived in for a few years. And the home they're looking for is the home they grew up in or the home they first went to when they got married, for example. It could be their childhood home, they could be looking for familiar faces. So the less memories they have of their family and friends at this age because their brain can't store any new memories. They're looking for their family and what they looked like 20 years ago, you know, in their in their younger ages. As far as the disease we try and rule out It urinary tract infections or UTIs, we try and look for signs of dehydration. So that could be causing confusion as well. There's a lot of related to different medication changes. So sometimes different behaviors or symptoms pop up if it's not a med that's working well with their, their system and not metabolizing as easy. So trying to figure out how to rule out those and find out what's the real trigger behind it.

 

Steve: 10:29

So as a caregiver, when a wandering starts to occur, let's say at home before they're in a community, what should your reaction be to that as a caregiver? I mean, do you challenge them? Or do you just try and maneuver them? What do you think the process would be

 

Erin: 10:48

the individuals able to verbalize with us, we always encourage to try and engage and see if they can give any more explanation. Who are you looking for? Where do you think they might be? Right? So if you're looking for a child, we might say, where do you think they are? They might tell us they have to pick them up from school. So if we know it's during school hours, we can redirect them and say, Oh, they're probably still there, you know, why don't we make them a snack at home. So when they come home later, we'll be able to meet them and have asked them how their school day went. So we lovingly title it, therapeutic retelling in the field, it's a way of meeting them in their reality and asking them for more context, the worst thing we can do is making them feel like they're not validated. Right. So right here, we're in a room together at UCI, for example. But let's say I was telling you, you're actually in a doctor's office, and I'm now messing with your reality, I would get very scared, if I was in that situation. And somebody was telling me, what I'm seeing and experiencing isn't real. So we want to help keep them in that reality, if it's safe, if it's not a threat to them, and see how we can get those memories that are still working to, to come out. So we can help them

 

Steve: 12:07

very, very good. So rule one would be probably not challenge, whatever round reality they're talking about. But try and find out more about that reality and then guide them to do something, divert them into something that would relate to that reality and help them cope with it. Oh, that's good advice. So let's talk about maybe some early signs of wandering.

 

Erin: 12:34

A lot of times, we'll hear phase phrases that will repeat, so I have to go to work, or I'm looking for my car, or I need to find my spouse or my children, it's kind of a self propelling need to go, that doesn't go away. So they may leave social events early because they're still in their head on track to find you know, their child or we hear sometimes families will come to the community and say my husband gets up at 2am every morning and takes a shower and gets ready to go to work. And he's been retired for 10 years, what is he you know, what's going on here. But again, it's it's those habits that are our stay with us. Sometimes they won't recognize their house anymore, that's a good sign of them. A very early sign, they might need to go on errands all the time. If they're home, they want to go out if they're out, they want to go home. So there's just this kind of need to fulfill some sort of a memory that they're not not going to get back to quickly.

 

 

Steve: 13:36

What are some of the risks of wandering?

 

Erin: 13:39

Very basically, unable to stay on task with smaller things like maybe they forget that they've taken their meds already for the morning. And maybe they'll take them twice. Those are very small things that we can look for, if we're caregivers at home with them and help orient them to that. But they may if they're wandering outside of the home, they might not be able to find anything to eat, they might not be able to hydrate themselves. Well, a lot of times seniors are at risk to be taken advantage of if they're found by somebody who's not friendly to them. Lack of sleep really causes a huge increase in confusion. We've had residents come to us who are found on the side of the highway, or a couple towns over, you know, they took the bus or said hey, I need to go here and it was the place they lived at 30 years ago, but no longer.

 

Virginia: 14:34

You hear that occasionally on the news

 

Erin: 14:36

right 

 

Virginia: 14:37

They will say that someone's missing.

 

Erin: 14:38

And a lot of times now they're starting to train government workers or their cities even worldwide, like Sydney, Australia, for example, is a dementia friendly city. So they train all their government workers. So if somebody comes into a post office, for example, they'll know how to, to recognize that and help them and look for something like a bracelet like you had mentioned.

 

Virginia: 15:00

Interesting.

 

Steve: 15:01

So what are some key ideas for preventing wandering at home,

 

Erin: 15:06

I don't know, if we can prevent it so much is want to help make them feel safe. So we want them to be safely wandering. So if they have access to easily go in and out of their house, maybe to a backyard that's locked or maybe to a garage. You know, if you have a engineer and mechanic who's used to working on cars all day, making sure they have access to that space where they can go back to work and fiddle with some tools and, you know, maybe take something apart, that's going to be an important part of their routine. That's, that's very rote to them. It's also important to make sure that they have extra supervision. So sometimes we'll bring in an extra caregiver into the home. If a lot of us are we have children, there's multiple generations we’re taking care or the sandwich generation. And so if we have kids, we might need to get a wandering system in place. Maybe some sort of an alarm that opens or turns on when the door opens, or something that alerts us when the window is trying to get opened as well.

 

Steve: 16:11

It seems like night might be an interesting issue, because of course, as a caregiver, you're you're trying to get some rest, and you're sleeping, and they get up and supposedly they're going to the bathroom or whatever. And you turn back to sleep. Is that a common occurrence?

 

Erin: 16:28

It is I think there's some things we can implement if it's early on those early signs. While we're trying to get a handle on this get resources from different companies, for example, something as simple as putting a picture of a toilet or a sink on the outside of the bathroom door, or maybe putting a stop sign to the door that leads out to the patio. So we try and redirect them, maybe try and remove things at those entrance and exits, like keys or a purse that would encourage them to continue on, you know, pick up their purse and keys and go shopping is very logical to all of us. It just shouldn't be happening at 1am in the morning, for example.

 

Steve: 17:13

That's good advice. That's good advice. I think you went down a path a little bit to talk about key ideas for preventing wandering in the home. Maybe we could talk a little bit about that. And then talk about some devices that might be helpful.

 

Erin: 17:25

Sure, absolutely. A lot of us have the same routine. So making sure that we have access to those, as we age, most of us have showered at the same time every day for 30, 40 50 years, if not more. So making sure that we're assisting them to keep those routines, throwing somebody off who has memory impairment, it is going to disrupt a lot of their day if things are out of order. So you know, if you're gonna give me blueberries on my oatmeal in the morning, I'm not going to eat it. But if you give me strawberries, I'll eat it all day, right. So those little tiny nuances that are important to them and their comfort, a shirt that's really comfortable for them or their favorite. So making sure just their basic needs are met. Also having some sort of a surveillance system in the house, whether it's cameras or those door alarms, a lot of them now, a lot of technology does go to our smartphones, making sure their smartphone, for example, has their GPS turned on as well, to make sure they're walking around, keeping the lights on, for example, in the home making sure the pathways are lit. houses that have multiple steps, often increase fall risk. If somebody is wandering and getting confused and turned around as well.

 

Virginia: 18:46

Our house alarm can be set so that even during the day, if somebody opens a door, it gives a light. You know, it's not annoying. It's not an annoying sound. But I can tell I don't have it set. But my mother in law had that system in her house where she would have that set. And whenever anybody opened a door, window, it would make a sound.

 

Erin: 19:10

There's doorknobs now of course you have ring and some of the other cameras even outside that'll notify you if there's motion. But there's a doorknob called August I believe you can buy it on Amazon. If you turn it wherever your phones at even in a different state your phone's going to send you an alert that says the door is being opened. And you can lock it automatically from your phone. If you'd like you can turn the lock back. 

 

Virginia: 19:36

Wow 

 

Steve: 19:37

technology, that's great.

 

Erin: 19:39

It's a band aid of course for a bigger problem, but in the meantime, you know just to help us get them situated, of course makes a big difference.

 

Steve: 19:48

You know, I hear you saying something and I don't know if this is the right word, but time and time again I The word that comes to mind is adapting to them. And I think one of the challenges is a caregiver has is that whole process. As a professional, you're trained that way. But as a caregiver, how do you how do you help somebody who's trying to figure out how to, instead of confront or argue, adapt?

 

Erin: 20:15

I think the first thing is to appreciate our own stress level. So if it's if their reaction to the situation is making us feel very stressed, then it's probably important for us to get some more help besides ourselves. This isn't a disease, that's just a one man job. It's a caregiver alone, as an informal caregiver, you can work up to 100 hours in the home every week, and that impacts your health. So at the very least, noticing how it's affecting both of you. Because if I get a little bit short, and that's how I'm responding to somebody that's going to increase their agitation or their anxiety or how they're reacting and they might wander more in trying to get to somewhere familiar. In general, just trying to stay calm, again, being somebody who can validate what they're feeling, right? Is my mom feeling like she lives on a cruise boat? When she actually lives in her home? Is that a safety risk to her? No. Is her trying to exit a safety risk? Yes. But if her reality isn't a physical threat to her health, or her safety, maybe it's not a problem, if we help keep them in that reality, because that's, that's all their brain knows, they don't have control over it, there's nothing that we can do, or that they can do to get them out of that loop, whatever they're stuck in. So we just have to meet them where they're at. Try and figure out what would be logical to somebody might not be logical to us, right? So just being patient, it's a, it's a long road, it's a journey, I don't think wandering is very predictive. It could be a couple of weeks, it could be months, it could be years, it could show up at any time. And it could go away at any time. So you know, the the only constant is change, I think in this disease process. And really just asking for more help. Nobody says when my mom turns 80, it's gonna be great when she gets dementia, and I'm gonna really enjoy when she's trying to want her out of the house. Nobody says that. You know, that's why we have these wonderful podcasts, for example, to help give us more resources. So reaching out for more help, even though that's uncomfortable, I think to talk about, it was probably the best thing we can do to overcome that really high learning curve that comes up really quickly out of nowhere.

 

Steve: 22:44

Well, let's spend a second on that. I think you've touched on something that is the caregivers out here. We've touched on a number of times, but you're really coming at it from I think an educational level, that's your you're trained to field your training. And also, you've dealt with caregivers. From another perspective. as a caregiver, we want to control things, or at least that's the perspective. And you use the word patience, a learning to get patient was incredibly important. It was like a change for me. How do you help somebody who comes in and talks to you about this deal with this change that they have to make, and maybe even angry about the fact that they're having to make this change?

 

Erin: 23:25

Anytime I'm starting this conversation with families, I remind them that if any other part of the body besides the brain was being affected, they would still be able to communicate with their loved one the exact same way. Unfortunately, they're learning a totally different person, their their hero, their mother, their spouse, whoever is becoming a stranger to them, appreciating small bits of joy, you know, so mom didn't exit today, her mom's sitting comfortably on the sofa, and she's folding clothes like she used to do, right that that could be a five minute thing. But appreciating when those moments come. They're there experiencing the disease just as much as we're having to watch it almost helplessly. So giving them that space. If they want to keep walking in and out of the house into the backyard and it's safe for them. If there's no steps and they're gonna go garden five times over and rearrange everything if they're still on a safe environment. That should be okay. We want to make sure they're hydrated Of course, sunscreen, if it's a one of our wonderful hot days recently in California that we are not enjoying as much as we would like that control piece will never be there. And for them. They're not bothered by their different reality. We're the ones who are getting stressed out about it because we know what they were capable of. Often times, by the time individuals start wandering, with memory decline, the part of the brain that's going to recover, they're not going to get back to a different baseline. This is their new baseline, we needed to just try and meet them where they're at. It's okay to vent to our friends, vent to, you know, a therapist or somebody who's, you know, support group, for example, somewhere that's safe. But ultimately, quality of life is what we want to focus on for them. Even if they're doing the same thing every day. There, they forgot, they looked for their child who they thought is five years old yesterday, they might look for that same child again today. That child might be you you might be, you know, 67 years old, and try and explain Hey, Mom, it's me. I'm right here. Why can't you? Why isn't this adding up to me?

 

Steve: 25:43

Yeah, accepting, that's one of the hardest things, of course, is accepting the fact that they don't recognize you anymore. And realizing you haven't changed and they still love you. But they just don't recognize you because they can't right now. My last couple of a couple of things here, what are some of the precautions or planning ahead that caregivers should do to be ready when wandering starts,

 

Erin: 26:06

just like we want to keep track of any family members who are having difficulty, you know, figuring out their way in the world, at any age, want to make sure that we have other people, we can enlist quickly to help. So we might want to have a piece of paper at the ready that has their age and their gender and you know their height and weight so that you can have somebody else to locate them or ask the cashier at their favorite grocery store. Hey, has, you know, mom stop by in today, this is what she looks like. Having pictures ready. knowing who to contact. So some states have Silver Alert. There's medical alert as well. Obviously, local police enforcement, emergency personnel as well. But knowing what places are very frequent for our loved ones, right? Their favorite restaurant or their favorite Starbucks down the road, or wherever they enjoy going to that's a on repeat for them. A lot of times trying to stay ahead of it and be proactive, will help other people when we need it. Hopefully we don't.

 

Steve: 27:15

So is there anything specific you would say to about what, what to do if someone has gone missing?

 

Erin: 27:20

Obviously, we want to notify as many people as possible. Older adults are very prone to injuring themselves getting lost getting hurt very quickly. And they will oftentimes not ask somebody for help, if they are concerned that person might be a threat to them. So we might say, Hey, I can't find my home. Can you help me? That to somebody who's older could be a feeling of anxiety? You know, what if the doctor finds out what if they make me stop driving? Right? Well, I'm not gonna tell anybody. I'm having trouble. I'll just buy it's a nice day, I could walk around for a while figure this out. Right homes, probably just right around the corner. Again, all all logical conversations in our heads. So I would say knowing who in your county to contact first, is is the most important and get as many hands on deck, neighbors, family friends, to be ready to look.

 

Steve: 28:21

Yeah, and certainly in my case, that's what happened. And I would only say taking action quickly. The idea that somehow they're out walking the dog and they’ll be back. You know, nothing's wrong if you find them walking the dog and help them get home. But better to take action rather than hope that things will resolve themselves. Yeah. Okay. So you work in a community and nd maybe you talk about how, how, what are some of the benefits of community living? And maybe touch a little bit on on why, you know, that's beneficial for wandering?

 

Erin: 28:57

Absolutely. So communities, a lot of times are bigger than our own homes. So that wandering tendency gives them more space to explore, at the very least. So I would recommend if you're going to a community to tour to ask them, how they approach this, you would want to share with them your loved one is experiencing some wondering, what do they have in place? Is the door to the outside open? Is there a way for them to get out? What's locked or not us hitting a locked door is is very stressful. I always say if you can imagine if you got locked in your bedroom, I would probably try and break the window if I couldn't get out of my bedroom into the rest of my house. You know, we don't live in our bedrooms. We live in the kitchen in the living room or we need access to be independent. So I think a lot of times there's a level of training that a lot of communities will have As far as personnel who know what to do, we had a lady at our Newport Mesa Silverado community who really just had a desire to go to the store, she needed to leave, a couple of times she got out, and we would walk with her. And the only person in that community who could bring her back was the housekeeper. She had connected to her on some level. And so we would have to drive the housekeeper to come find us, you know, walk with her down the street, and we would say, please go get this housekeeper because they're the only ones who can talk them back. So a lot of times, it's a connection, right? You want somebody who's familiar with them, they use the same caregivers every day, for example, so that they have that familiar face that familiar sound of their voice so that they'll trust them, when they're in a situation that's really difficult for them.

 

Steve: 30:48

So what are some of the benefits? You mentioned, the whole idea of space for living in a community? Yeah, I know that that decision to make a decision to place your loved one in a community is by far the hardest choice that we've ever made. Both Virginia and I, we agree on many things, but that's for sure. One of the things

 

Virginia: 31:10

absolutely, yeah.

 

Steve: 31:12

So what do you say to somebody who's considering community living?

 

Erin: 31:18

I think we delay care for memory decline the most out of most diseases, most of the time, if you have a diagnosis, you go to your physician, you go to a specialist, you might get a second or third opinion. But ultimately, we act on it very quickly. Because of the stigma that's that's lasted, you know, the thought of nursing home, or maybe we were the child that promised Mom, we'd never move them in somewhere, right? So it's, it's a, it's a very grief ridden event that is very devastating for the family, too. It's a loss of independence for our loved ones, people who are the most important to us. But our loved ones will give us signs, right. So if you're already seeing signs of wandering, we want to help prevent it from those worst case scenarios that could be right around the corner. So even sometimes, if there's a day program, or maybe a short term stay, that you can trial, a community at, I would always recommend that just a a see the benefit of having multiple layers of professionals. So communities might have pet therapy, or music therapy, or they might have a psychologist or different levels of activity that are more or less attractive to an individual that would be more beneficial than at home. 

 

Steve: 32:48

Yeah, that was the that was the cornerstone of my decision anyway, was is the care that Patty was going to receive better than the care I could provide at home, even with 24 hour caregivers. And the answer was yes, because there was so much more to do. And I think you're right, we all wait too long. Hard to say. But anyway, that's that's the truth. Well, Erin, I want to ask you one final question. Is there anything that you would like to share with our audience about this disease, the one thing based on your experience that caregivers should keep in mind

 

Erin: 33:26

I would say we make very impulsive decisions based on immediate action. So if you have a quiet space to yourself, where you can think a little bit more calmly, and kind of view your options or maybe bounce it off somebody, it's really hard if we're on the day to day to see the change that's happening. So I would say, just try and try and take a step back, see if there's a way to care for your loved one. Ultimately, the option to ask for more help is courageous. We're not all trained caregivers. I had to figure it out as I went in high school, you know that that shouldn't have happened, I would have loved to have been able to move my loved one in somewhere to be a little bit safer, but I did the best I could. appreciating that it's important for us to be the family again, I would have loved to have been the granddaughter again instead of a caregiver. There's some things I would have enjoyed doing with her like, you know, we used to play the piano together singing together, but I was the one who was helping her with care. So I think just appreciating that. There are a lot of resources now. You know, reaching out to UCI MIND of course, Alzheimer's, Orange County Alzheimer's Association. There's a lot of people who want to help especially in Orange County, we’re the sixth largest 55 and over population in the country. There's a lot at our fingertips, I think trying to fix things. Being realistic with ourselves. If this is the baseline that my loved ones gonna stay at, how do I need to help them? How can I be the family again? Am I am I providing enough care, we all love our loved ones very much. But this isn't a disease, unfortunately, that we can tackle on our own.

 

Steve: 35:24

I think you touched on a very important point. And, and we've heard it in our in in the men's support group we were running. Put your perspective at them rather than on you. I think sometimes we're afraid to lose them, were ashamed to have to admit that we need to put them into a community or place them in a new community. When in reality, if you really are putting their care at the beginning and at the first decision, then it becomes much easier, or the fear that you're going to not have your loved one with you anymore. If you've been married for a long period of time, or if it's a loved one, that you're so close to this idea that you're going to lose them. Yes, that's true. But what are you doing for them? 

 

 

Erin: 36:10

Absolutely.

 

Virginia 36:11

I have a question. 

 

Erin: 36:12

Yeah. 

 

Virginia 36:13

If someone is taking care of their loved one at home, and the wandering issue is getting really tough, they're turning around and they're gone. Again, I know that we can now buy these little tags that we attach to our suitcase. And we can actually know when it's getting on the plane. And when it's coming down the chute. What stage is that technology in right now for actually keeping track of a loved one.

 

Erin: 36:40

There's a lot of options. So there's inserts in shoes now that look like orthotics and they have a GPS tracker in them. A lot of watches you can give to your loved ones for birthdays, or the holidays, you know, GPS watch, there's a lot of different options for those as well. tile, or Apple air tag those you can track really well we've put those on just individuals in the community who happened to get into very unknown places, like a closet, for example, in a large community. So those are very accurate. as well. And sometimes we just tell our loved ones, hey, we've got a new, this new, cool label for your shoe. You know, you could put it on the back of it or something. The bracelets are great. They share what immediate attention needs if that, you know if they're diabetic, or they have certain allergies or whatnot, but there's a lot of options for GPS tracking.

 

Virginia: 37:36

Okay. Yeah. Well, that might be you know, an option if it's really a problem that your home. Yeah, thank you very much.

 

Erin: 37:44

It's my pleasure. Thank you for having me.

 

Steve: 37:46

So amazed all the time to see someone as young as you are, who has made a commitment to helping others with this disease. Very important, very important.

 

Erin: 37:54

Thank you for having me. I appreciate it. It's been a pleasure to be with you today and look forward to continuing.

 

 

Steve: 38:00

Thank you. 

 

 

Outro: 38:02

Spotlight on care is produced by the University of California Irvine. Institute for memory impairments and neurological disorders. UCI MIND interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the spotlight on care podcast wherever you listen. For more information, visit mind.uci.edu