How dementia caregivers navigate a challenging role: Catharsis, humor and patience

Connecticut Public, StoryCorps and Morning Edition are marking America's 250th with a time capsule of stories featuring you. Match with a stranger from a different part of the country and talk about your lives. Sign up at connect250.org. This is where we live from Connecticut Public Radio. I'm Catherine Shen. Dementia is one of the leading causes of disability among older adults. And for caregivers, taking care of loved ones with dementia is filled with a variety of emotions, worry, sadness, and grief, but also connection and love. Connecticut Public held a conversation in June focused on caregiving. It was in front of a live audience at the Webb Dean Stevens Museum in Weathersfield. Panelists explore the role the caregiver plays and taking care of someone with dementia. And today, we're going to listen back to that discussion. The guests include Tanya Maurer, who is a Connecticut resident and care partner to her mom who has Alzheimer's disease. Maria Canales, who educates Spanish-speaking communities about dementia with the Connecticut chapter of the Alzheimer's Association. And Colby McCaskill, a New York City writer whose award-winning podcast explores his grandmother's advancing dementia. This conversation is a part of Connecticut Public's ongoing coverage focused on caregiving and aging. You can learn more at ctpublic.org slash caregiving. Connecticut Public Latino Community's reporter Danela Donsell moderated the panel, and she starts by asking Colby about his podcast. Your audio letter was selected as the Grand Prize winner for this year's NPR College Podcast Challenge. Another big congratulations there. And thank you, thank you. We are going to listen to it in just a minute. But before we do that, I would love to ask you, can you briefly share how this project got started? My name is Colby. I was a recent student at Fordham. I just graduated, as you heard. And this podcast that I made that you're going to listen to, it started kind of as a class assignment, but it really evolved to something much more than that. So the class assignment was basically write whatever audio story you want to do. And I decided I want some way to remember. My grandparents. I hadn't seen them for a little bit, and they lived in Colorado. So I was like, I'm going to book a flight. I'm going to go interview them. I'm going to bring my headphones and my microphone, and I'm going to write some kind of radio story about it. And I went and I had a really wonderful time and a really kind of heartbreaking time seeing my grandma's dementia in a new way. Like I hadn't really seen it that bad before. And so when I got home, I was like, okay, how am I going to write a story about this?

And when I walked in the door, I realized that my grandpa had, I think it was a few days after, actually. So my grandpa had written me a letter about our trip. And I was like, perfect opportunity. I'm going to write him back through a podcast. So the thing you're going to hear is basically my response to my grandpa's letter. And the first thing I did after I published it was I sent him the link. And I said, do I made this for you? I basically delivered the letter instead of via the postal service via Spotify. So yeah, it started as a class assignment, became a way to kind of just, yeah, share my feelings and my heart about this really kind of hard to talk about subject. Absolutely. I think that's a beautiful thing being able to kind of explore some really complicated emotions about something that can really impact so many people. Let's go ahead and take a moment to listen to Dear Papa. Dear Papa, it's hard to admit because it feels like there's no solution. But I really wish you and Grammy weren't growing so old. When I saw you both on that Saturday, the first day, in the airport, you both looked so different than when I saw you last. It feels rude to say you both looked older. I don't mean it in a bad way. Your walk, just a little bit stiffer. Grammy's hair, just a little bit whiter. I'm sure you know out of everyone how her dementia has been progressing. How she can't remember my name or her age? I am at sea. I'm like, I am. I'm over, I think right now. I'm like 47 years. That's how, you know. But to be dealing with cancer on top of dementia, that's a whole other fight. That day in the airport. I was just reminded how, as the days in the months march on, we're quickly losing Grammy, and I'm slowly losing you. I don't really know what to do about it other than make time to be with you and write you this letter. I don't know if there is more to do. What am I supposed to do?

Dear Papa, I think it was on that Sunday, so I was lying down in the lawn in your backyard, that the breeze rustled through the trees and made that wind chime clang around endlessly. The storms of life were tossing me around, clanging. My mind couldn't keep calm. Why am I responsible? I am responsible? I am responsible? I am responsible? Can I do? What can I do? What can I do? What haven't I done? And I was scared. I remember that you seemed to have an answer for the fear. One or two times you brought it up over a meal. Don't be afraid, you told us. Don't be afraid. The next day we would be waking up, going to the hospital again and starting cancer treatment. Don't be afraid. We would be driving over the amber waves of grain, past the big red rocks to a dark room, filled with a big scary machine. Don't be afraid. Well, Papa, I couldn't do it. I couldn't stop the fear from rising. Is that even how it works? That we can just make the decision not to be afraid? Grammy told me later that she couldn't hold it back. The older I get, it makes it harder for me to remember. Now, I started to say something, and then I can't remember. But it is a little scary, honey, that when I walk in and I'm going to do something. And then I can't remember what I was supposed to talk about. You said you saw it too. You said that you could see. There was some, well, anxiety, maybe a little bit of fear, uncertainty. So that was my principal concern was more about her. Dear Papa, do you remember the hike we did that Monday in the Garden of the Gods? Okay, it's kind of windy. Today is... Monday? Monday? I'm standing at the top of a big sandstone, red sandstone. Yes. Rocked, your name? Kathy McCaskill. What do you think about all that you see? I love being here with you. My, Arlund, our young man. On the top of that blestery hill, I think I finally realized that the winds of time don't stop blowing. Things have permanently changed. Grammy isn't just dealing with cancer. She's losing her memories. I mean, you could hear it in some small way. I've already lost a part of her, the part that remembers my name. But you told me later that you actually feel more connected to her. You said, do you think... I'll use the word dependent and needy that I realize she is. That's brought me emotionally closer, spiritually closer as well. I would have thought this kind of change would emotionally isolate you from her. After all this time, five decades together. It's a long time. Yeah. But truly, it's getting...

In many levels better and sweeter. Even in this time? Yeah, I think even in this time. I asked her about that too. My precious husband, you know, he'll stop and he'll wait and he'll say, well, what were you talking about a minute ago? And he helps me bring it back to me. Actually, you two seem closer than ever. How much do you love Grammy? Oh, hard to put it in words. How much do you love, Papa? Oh, honey. There are things that I know she's not mentally following me. You can probably see some of that as well. But I think that in itself brings us closer. He's an amazing man. He loves me. When I ask her if I love her, she says yes. I don't know what I would do, honey, if Dick wasn't my man. And I say how much and I go like this, you know, just stretch my arms out as far as I can. So, yeah, it's hard to put it in words. I love him with all my heart. Give everybody a hug at home. I will. Bye. Tear Papa. When you dropped me off at the airport on Tuesday, I wish I hugged you harder. I wish I held on to Grammy for longer. Part of me was worrying about how she couldn't remember her own age. I'm now 44 years old. And part of me was worrying about how she couldn't remember my name. Most of me just didn't want to see her change. Most of me just didn't want to see her grow old. Most of me just didn't want to lose her any more than we already have. Most of me just wanted to, like you, grow closer to her, not further away. But then when you both wrote to me, most of those fears blew off into the mountains. You are very precious to us, y'all wrote. I know he had some tears when we took you to the airport. We eagerly look towards next time we can be together. Perhaps we can be with you near your birthday. Come to see us in Colorado in the summer. Much, much love to you, grandson. Dear Papa, I hope we can too. Much, much love to Grammy and to you.

Wasn't that beautiful? Wow. That kind of got me a little bit. I'm sure I'm not alone in that. That was, it just, it sounded like such a warm hug, you know. Thank you for that. Thank you for all that work. I would love to hear your thoughts, Tanya and Maria. What came up for you when you were listening? Time. So time is interesting when you're on a caregiver journey. It's interesting when you're in a family unit and witnessing it as well. And accordions. Sometimes you think time has actually gone away and a lot of time has actually passed when in all reality it hasn't. So that was one thing. Time. keeping that close to your heart, right? And then the growing stronger together in love, hearing that love, right, come through between your papa and your grandma, right, is just amazing. And I can totally resonate that with my mom. And I've seen that with other caregivers, too. When they are just with their loved one. You know, that love grows stronger, becomes different. It changes. It totally changes. Yeah. So I think those are the two things I take away. So the first thing that I thought of was love. Because it's easy to love when everything's normal and perfect. But true love... The humanistic true love comes when loving someone is hard. And not everyone stays around during those difficult times, and we've all seen it as caregivers, how our friends kind of disappear because they don't know how to talk to us or how to address it. And sometimes they don't want to address it themselves because they're going through it. And it was just like a love letter. Because in love, especially during difficult times, you pay attention to your loved one, to every little detail, to the fact that you wanted to hug them longer and keep them closer, to the fact that your papa loved her more and was so gracious to have that time with her, where he was her everything. Colby, any thoughts just hearing this? I love hearing it every time. Yeah. I mean, like, we can talk about it for hours. I think the one thing that I wanted, that I remember about this is I was not expecting it to be this globally. Like, you know, you, you see someone changing, you see someone kind of the... the cogs of time and the wheels of time like kind of shaping them into a new new person someone who's who's more dependent someone who doesn't remember things and that I was like expecting it to kind of like to me to go there and to kind of see that it's like you know time is wrecking havoc that's what I was I think that was the fear I had

And so it was like, yeah, a very real revelation that for some strange reason time has brought them closer together. Like how did that happen? Like I think that was almost like me trying to process. This letter was me trying to process. Like that feels so backwards. But it felt so inevitable that like, oh, yes, they're relying on each other more. They're having to be more honest about their needs. And that brings people closer together. That does. So that was, I think, the thing I just heard. And it's like, that's so surprising that like talking about this stuff and bringing it out into the open, these hard emotions, these hard feelings, that actually can bring you closer to your loved ones. That doesn't have to push them away. Absolutely. I also do want to point out just as someone who loves radio and audio broadcasting the fact that you left the sighs and the moment of silence in there to let us connect with you because we know. I know everyone of us either knows it personally or knows someone who has had to have that moment of just sighing and processing. I appreciated that a lot. But as you said, we could talk about this for hours. So let me take a second. I want to turn to you, Tanya, because you mentioned how this resonated with you and your mother. And I would love if you could talk to us a bit more about her and how you discovered her, you know, getting her Alzheimer's. Oh, my mom. is known as the laughing lady. And I think that's one of the things that actually gives us a foundation. So my mom was diagnosed in 2017. The very interesting part of that is it wasn't a discovery. My mom had moved back down from Vermont. She moved in with my husband and I. She bought the house literally next door, so we had the path to grandmas. The dogs knew the path to grandmas. We do not have children. We don't have grandkids. So it was the dogs. When we were going through that process of her moving in with us, getting the house set up, and all of that's kind of wound up in there, things fell off, but it felt more like stress. She's older. My dad had been gone for some time, and she's moving back to Connecticut. Then she surprised me and said, hey, do you want to come to a doctor's appointment with me? Wow. Okay, sure. There must be something brewing. And in that doctor's appointment in March of 2017, she was diagnosed with Alzheimer's. So it was just a surreal experience. Yeah, and being a caregiver to her and kind of morphing through the role reversal is very interesting.

And I didn't do the size. Mom and I would go on the back deck, hold hands, and scream at the top of our lungs. That's even better. That's even better. Thank goodness we live in the country because nobody came running, but the dogs. We're going to take a quick break, and when we return, we'll hear more stories about the dementia caregiving experience. This conversation is a part of Connecticut Public's ongoing coverage focused on caregiving and aging. You can learn more at ctpublic.org slash caregiving. This is where we live. I'm Catherine Shen. Stay with us. This is where we live. Support for this podcast comes from Hartford Healthcare. Elevating Health is funded by Hartford Health Care. As we transition our activities and exercise to the outdoors, there are some precautions we should take. Stephanie Barrasso, Director of Sports Medicine at Hartford Health Care, tells us more. Going from indoors to outdoors, we have this mismatch where our body is not quite prepared for what we're asking it to do. So we'll see a lot of ankle sprains, ACL injuries, and some tendon issues like jumpers need because our runners are getting out there and changing some of the surfaces that they've been running on all season long and now they're transitioning to outdoors. Barrasso stresses that the right conditioning and proper supportive footwear is key for all ages to avoid injury. And that taking it slow is the way to go. Progressing gradually, implementing a lot of strengthening exercises, doing a nice active warm-up, and then sleep, hydration, and really trying to focus on a little bit more of that recovery. To learn more, go to ctpublic.org slash elevating health. From Connecticut Public Radio, I'm Catherine Shen. Being a caregiver for someone with dementia is a crucial but difficult role. Today, we're sharing Connecticut Public's recent discussion exploring that role, featuring Tanya Mauer, Maria Canales, and Kobe McCaskill. It was held in front of a live audience at the Webb Dean Stevens Museum in Weathersfield. Connecticut Public's Latino communities reporter Danela Donsell brings us back into the conversation by asking Maria about the dementia education sessions she holds for Spanish-speaking communities. Can you tell us a bit about who shows up for these and what are some common themes that come up? So we actually have a whole caregiver series. It's a five part and I actually did it through Zoom February into March. So we're hoping to do it again. So there'll be opportunities for you. And the reason it's five parts is because there's different parts to the caregiving. between the initial, like, how do you care for them while still giving them independence, the behavior, which is what everyone at some point will experience, and eventually having those tough discussions about what do you want when you're at this point or at that point.

So it tends to be caregivers that show up, often with some kind of problem or some kind of dilemma. So this is why we don't record our sessions because we want them to be open to people just having discussions. And it's tough discussions and questions like, you know, my mom is having behavioral issues because of past trauma. How do I handle that? two simpler discussions like, how do I have that conversation about taking those keys away? So we have tons of resources on ALZ.org, which is translated into Spanish. So there's a lot of resources there if you want them, but most importantly, it's just providing them resources, someone they can just talk to you. I can only imagine how important it is to have that space for someone to be open and be candid about how they're feeling. What do you usually suggest to people who come to your sessions feeling emotional distress? First of all, the one thing that I always start with and I end with, it is not selfish to take care of the caregiver. If you do not take care of yourself, then there will be no one there to take care of your loved one. As a past caregiver, I learned that very quickly within the first six months. So I try to hone that into other people. And once that they understand it, it's okay to seek respite care. It's okay to leave your loved one in someone's hands for a little while, while you take care of themselves. Then I tell them, you're not alone. We are here. There's millions of us. It might even be your next door neighbor. That's what I found when I became a volunteer. I had so many friends going through it silently and never said a word. And now that they know I'm a volunteer, they're like, hey, I'm going to go to the walk. Hey, do you know this resource? Hey, where can I get this? And they're opening up. And that has been... meant the world to me to have that closeness with friends that I thought I was close with, but now I really am kind of part of the family. Well, as we've all said many times, caregiving is hard. So talking about it is hard. Colby, we kind of touched on this even just talking earlier about how just talking about these kinds of emotions can be difficult. Can you talk a bit more about how your audio letter opened the door to having some of these difficult conversations? weeks and months and now a year since I made that letter. I've had... follow-up conversations with my grandpa, you know, about the things in that letter. And we talk about how he's doing now, how he's feeling. NPR flew me out to see them for the prize, which is like an amazing experience. And I got to see them and hang out with them and do an interview with them for National Public Radio. And we had a conversation about this, about how it's changed. One of the things he said was...

Yeah, kind of me using that word dementia was kind of the first time as a family that we had named it that. Before that, Grammy's going through something or she's having health problems or her mind doesn't totally all there. So like just the simple like, you know, fact of naming it, calling it something really did open the door to kind of recognize, oh, that means that has consequences. And we got to figure out what those are. So that's one way that. You know, just saying the word dementia or calling it that or calling it Alzheimer's is a way to say, okay, this means things have changed. That means we have to adapt now too. For the NPR interview, we had a, oh man, it was like an hour and a half interview. And for the last half hour, I was just in tears for all of it because my grandparents were for the first time in front of me talking about death and talking about what it means for them to think about. their future death and how they feel about that. And that was the first time I had ever considered that my grandparents one day won't be here. And after that, we could have a sprawling conversation about how I felt, about what I want for them, what I want to do with them in the last few years that they have. If we weren't able to kind of like... broach that topic if I had to not fear if I had to keep it all inside like all those feelings would still be there all that pain all that confusion all that worry would still be like festering in my body and so we wouldn't be for the better but By getting it out, by speaking it into existence and kind of like laying it out on the table, it didn't make it kind of easier to deal with, but it actually made it so that we were able to deal with it. I really appreciate that thought of just acknowledging it by naming it, right? Just putting a name to it and acknowledging it in that way. And I think with something like dementia, there's a lot of concepts that if you're not familiar with the disease, you might not realize how to even talk about, right? Tanya, ambiguous loss is a term that's often associated with dementia diagnoses because, you know, the person is alive, but their mind is gone or fading. Some people describe feelings of grief to, has that been coming up for you as a caregiver even in this conversation? Oh, golly, Miss Molly. Yeah, yeah. Actually, I was in a recent support group meeting. I actually... read what I had written in my journal about two incidences that happened within four days. The first one was on Mother's Day. I was in church. The pastor was giving his sermon, and I couldn't listen anymore because it was mother-driven, mother-love. My mom is still my mom, but that hurt because she's not who I wish she would be right now. And sometimes there's guilt associated to that. So I literally went out into the gazebo and cried so hard my body shook.

And I just wanted to lay down and not wake up again because that's the only way that that pain would go away. We never know when it hits, but when it hits, it hits like a box of rocks. And it stops you in your tracks. For me, I needed to acknowledge it, digest it. Write it down and saying it out loud in the support group allowed me to acknowledge it again and know that it's okay. It's absolutely okay. And going to support groups or even grief groups, which I've gone to as well, which is a little different because when you go to a grief group, it's typically with others that have actually lost somebody, but my mom's still alive. I'm just losing parts of her I wish was still there. But then I also need to accept the situation in who she is because she teaches me love every day in the moment. What's that, sorry, you used a term earlier. Was it something lost? What was that term? Ambiguous loss. Ambiguous loss. Yes. Yes. That's the feeling that I guess I had when I realized that my grandma just won't remember my name again or her age. Like those, that's, that's really interesting. I just named it. I've never heard that term before. We're learning how to talk about these things all the time. But, you know, Tonya, thank you so much for sharing such deeply personal experiences. We appreciate that greatly. Maria, what about you in terms of ambiguous loss or this idea of grief? Does that come up in your sessions or even for you? Definitely. Although I wasn't a caregiver for someone with Alzheimer's, I was a caregiver after a massive stroke for 10 years. So it was definitely a daily idea of how do we fit in this new world. And one of the best things was the doctor that ran the clinic. When she first had her stroke, she said, you will know when quality life no longer exists and you have to let go. And we knew that the last year. So we slowly let go. Slowly went through that grief period that last year. And so when I now speak to caregivers and I see that, the first thing I do is if it's in person, I give them a hug. Because hugs are so, like, involving, warming. It's like, I'm here with you and you are not alone. And then we talk about it. Where are you in that kind of wheel of grief and loss? And how can I be of service? And sometimes it's just listening. Sometimes it's giving advice. And sometimes it's just making you laugh. And laugh sometimes with the most ridiculous stories are things. But in that moment, if that's what they need, then that's what I'm going to give you.

Tanya, for you talked about the support groups that you've gone to. Can you tell me a bit about what other kind of support that you get as a caregiver or that you do for yourself? That's not fair. Where's the Kleenex? I have my yoga teacher here. I have my first community family here. That is what we have. I have my friends from the Alzheimer's Association here. And I give my permission to tear up. Thank you. So I think for me, and we've heard it from Maria, is it takes a while for a caregiver that's immersed in caregiving to actually get that swift kick in the butt to say, You need to do something. The other thing that I have is my husband who knows me insanely well because I immerse myself in everything. And he's good at saying, hmm, I think your bike's getting a little dusty. I think the dogs are getting a little antsy. Maybe you should go take a walk. Please. So I think I have a good support system that has been cultivated. And this is the weirdest part we're talking about time. Over the 10 years, mom will be diagnosed next year in March. It will be 10 years. And that's a long time. We go through an evolution. So, and you just build the people around you. And then over time for me, I feel very lucky because organically, I have enough people that will tell me or ask or check in or hug or just listen. And go out on a deck and scream at the top of your lungs. When it's needed, right? Absolutely. Let's talk a little bit about just like the reality of what it is to take on that role. You know, how have you altered your work or your life to be able to be a caregiver? This is kind of very strange for me because I worked in corporate America for 20 years. And I will say, luckily, I was laid off in September of 2020. Everybody remember 2020? Right. Mom was living next door. I made the decision. to not pursue work at all. So I ended up being a full-time caregiver. I'll tell you, cleaning two houses, doing the lawn of two houses, doing appointments for everybody, remembering everybody's schedule, that is a lot of work. The decision to actually bring my mom to her first community was a heavy one.

That helped to, I'll say, reduce the work from a household perspective, but that never, ever changes the caregiving aspect of what you do for your loved one. Because now it's... When's the last time? Was she seen by the doctor? When is she doing this? Why is she sitting all day? She's mobile. Let's get her moving. Bring in PT. So it brings on different aspects. Absolutely. Thank you. Speaking of households, Maria, I would love to talk a bit about Latino households for a second. I come from a Latino household. I have been helping in covering caregiving stories for Connecticut Public with the wonderful Michaela Sabbath. Let's take a quick second. Just so how she does so much in terms of caregiving coverage for our team. So I just wanted to give you a quick shout out. But in my own reporting, I've spoke with some researchers out from Yale, and one of the things we learned is that oftentimes Latino communities have family members, take care of family members, because they often lived in extended family households. Can you talk a bit more about this idea and why it's so important to have dementia resources specifically for Spanish speakers? Well, first of all, dementia and Alzheimer's itself has such a stigma. and it's not conversations you have in the Spanish household. They're just getting old. He just forgot. You know how it is when you get that age. And secondly, you don't tell your business outside your household. So if something's happening, if you see a change, you don't go and talk to the doctor. I'll talk to the curandera. I'll find some home remedy. It'll just fix it. So when I go and I do these sessions in Spanish, I try to first impart that this is a disease. It's nothing to be afraid of. It's a disease like diabetes or heart disease. And that's why there's medications and there's treatments. There's not a cure. But it's conversations you have to have. And I tried in part, you have to see your doctor. There's nothing that the curandera could do. And those memory pills, it's not FDA approved. You know, you take green tea, it's not going to bring her back. So having those kind of open conversations and getting them to, first of all, trust me. to come into their realm and tell them this information and then just, hey, hey, these are the statistics where 1.5 more likely to get this. Women are two out of three.

So what are you doing to change it? Even some of them in my trainings, I've done partnerships with nutritionists so that I can say, hey, I know you like that rice, but here's an alternative. Here's a new recipe you could try. Just try it. And if you don't like it, at least you tried it. At least you changed something to improve your health. So just kind of looking at it from a different perspective, knowing how sometimes close-minded and stubborn we are, and just kind of sometimes with laughter. And that opens up the floor and then people start talking to me and they tell me about their experiences and then they start saying, well, do you think this could be a sign? Do you think this? And then I kind of give them the literature, the resources and then You know, at the end of the day, I say, if you have to call me, just call me. I'll be there. And a lot of hugs. We'll pick up this conversation and the Q&A session about dementia caregiving in just a few minutes. This conversation is a part of Connecticut Public's ongoing coverage focused on caregiving and aging. You can learn more at ctpublic.org slash caregiving. This is where we live. Stay with us.

You don't have to travel far to discover something amazing. Connecticut's Hidden Gems is back with a new season exploring unique destinations, local favorites, and unforgettable experiences across the state. Whether you're looking for your next day trip or simply want to see the state in a new way, there's always something waiting to be discovered. With support from the Mortensen Foundation, watch season two of Hidden Gems Now at ctpublic.org slash hidden gems. August is National Make-A-Will Month. Connecticut Public has partnered with free will to offer a free, simple, online estate planning tool. Enjoy peace of mind and security for your loved ones by setting up your will today in less than 20 minutes. You can also create a lasting legacy gift to Connecticut Public that supports your favorite programming for future generations. Your legacy starts here. Visit ctpublic.org slash visionary today. This is where we live from Connecticut Public Radio. I'm Catherine Shin. Today, we've been listening back to Connecticut Public's conversation about dementia caregiving with guests Tanya Maurer, Maria Canales, and Colby McCaskill. It was held in front of a live audience at the Webb Dean Stevens Museum in Weathersfield. Moderator and Connecticut public reporter, Danela Donsell, asks one last question before the Q&A session. What's your advice to people who want to support a dementia caregiver in their life? I can start with you, Tanya. Love this question. If you have somebody that you're looking to help out and they're a caregiver, don't ask that caregiver what do they need. Just do it. Bring them a cup of coffee. Bring them a bouquet of flowers. Go in and let them know that you'll sit with their loved one and they can just simply go out and sit outside. Don't ask them what they need. You know in your heart, give them what they need. I think the best gift you can give someone who is caregiving is love through attention. So when you're with them, turn your phone off, give them all your attention, because maybe they just need to vent. And if you're distracted, they're just going to kind of pull inside and they're not going to tell you half the story. So if you're giving them attention, you're going to know when they need the coffee. You're going to know when they need to be taken out for a girl's night or a boy's night, as it is. You'll be able to pay attention to those little things that you never noticed they were showing. And now that you're paying attention, you're like, oh. That's her cue to say, I need help. So let me give it to you. What was the question again? How to help? Yeah, what's your advice to people who want to support a dementia caregiver? I probably wouldn't interview them and turn it into a podcast. I probably wouldn't do that again. I would probably do half of that. I would like make space for the hard emotions. Like paying attention. Fantastic.

Yeah, make space for them to say like this sucks. This is hard not in a way that like I you know I hate this person that I that I'm caring for is no of course that's why it's hard because they love them and it's it's hard to see someone you love change and and lose parts of themselves. So I think like yeah making space to say the things and to name the things that feel really uncomfortable and really really torturous in the moment, just like kind of letting that be a part of the relationship, that you're someone who they can be totally honest with and not face any kind of criticism or skepticism or questioning that you're just willing to hear it. Yeah. Thank you. Thank you all so much. Let's give a round of applause for our wonderful panel. Please do not be shy if you have any questions, thoughts that you'd like to share. We would love to hear you. This is an open, safe space. Please. What tips do you have for families who are considering moving their loved one into a facility? Where do you start? What do you consider? Great question. A couple things when you're moving somebody into a community. Some folks may not know this. There's actually organizations that will be like a matchmaker. So you can even Google that. They will go out and interview and can interview you, try to match you up with a community. There's also coaches out there as well. Me specifically, when I was going through the process, it's the care. What type of care is going to be provided to my mom? When she first moves in, is there an escort or an ambassador or somebody that will help them? Because it's a new place. Navigate. When's meal time? How does that all work? I know somebody that actually interviewed people in the parking lot, right? Sounds silly, but really? Talk to a family member walking out the door. You'll probably get a really honest answer, you know? So I think it's right down the list of things. Don't be shy. Communities are trying to bring people in, but don't be shy. What's the care plan? What's the nurse coverage? What happens when my loved one falls down and goes to the emergency room? What's the protocol? I'm going to fess up because Tanya's talking about me. But I had moved my mom to a place that was close to me during the pandemic because I had to get her from Massachusetts to be near me. And that assisted living worked essentially only because I was close enough to do everything. And when she needed memory care and that turned out badly, I was so determined to find a good place.

I made a list of questions. Top of the list was the staffing. I wanted to know the actual amount of staffing, the number of nurses, when they are present, and the staff turnover. Because where my mom was before, the great people were there, and they disappear. So how, you know, are you able to end? Direct care staff everywhere. It's an acute situation. But at the top of the list, Tanya, you are so right. I staked out there parking lots and talk to people. Staff, families. Hi, do you have a loved one here? What do you think of this place? Is it good? I'm licking. And then go to the support groups and talk to families. Families telling other families, talking their truth to each other, that was my absolute... top thing. I believe it to them. Because I'm sorry, you know, marketing is just, I mean, I literally had to, like, not answer my phone for a couple of weeks, and then I started answering to say, it's over. You can stop calling me. That's my, so, yeah. Thank you for that. Yeah, no, that's amazing. And listen, we're laughing, but honestly, that's, it works, right? I mean, that's why we're talking about this. Oh, yes, please. Hi, my question is for Colby. Congratulations again. Tonight was my second time hearing through your podcast, and there was one moment that got me choked up both times, and it was when you were on vacation, went to your family, and your grandma was saying, this is our, hour, and you could tell she wanted to say your name so desperately. But she was like, our young man, right? When you were editing, was there a moment, because you've probably gone through hours and hours of footage, was there a moment where you were like, Oh my gosh. In the moment, that felt like the end of the world. Yeah, because she couldn't say my name. She didn't know I was there. She knew someone was there. She knew her young man was. That she's really searching. that she's really searching for my name. And she can't get to it. But she kind of gets the next best thing, which is like our young man, right? Yeah. We have time for maybe two, maybe three more questions. I see one hand over here. So I've been down the journey that you have been with my mom. It was 10 years. My mom had vascular dementia. And it was a journey. And I was very proud to be on that journey with her, and it taught me so much. So I grew so much. I would do every aspect of it again, even though it was the hardest thing I ever did in my life. Now I found myself, my mom has now passed away. And now I find myself at the point where... Now it's my spouse. And I'm feeling very overwhelmed with the thought of the journey again. Excuse me. It's very different than having it be your parent. So that's where I'm at right now.

And I don't know. I don't even know where to start. But it feels very overwhelming. And we see you. And you're not alone at all. It may feel like you're alone, but you're not alone. So don't go anywhere after this session, honestly. Because you just reached out, let us catch that line. And I'll just extend that to everybody in the room as well. Yeah. And thank you so much for sharing. Hi. It's been 10 years. It's going to be 10 years this month. My father passed away from Alzheimer's. And sharing is nothing to be ashamed of. Because I think that when we're going through this, there's a stigma to that, you know. And I talked to coworkers. I talked to friends. found this great support system. And as I found out that when I used these resources, other people that I knew were going through that, I was able to tell them, go do this, do this, do this, you know, call this person in the hospice, do this and this. It helped. It really does. You're not alone in this. He started forgetting everybody's name, but I would come in every day because they lived on the same street that I did. You know, they lived there. They had a house down the street. And I would come in and say, hey, how are you doing? And he goes, who are you again? And I go, who do you think I am? And he would say, I don't know, but I know you're somebody I love. And I still remember that. That was love. They don't forget the love. They might forget your name, but they don't forget the love. Absolutely. Absolutely. Well, thank you. And thank you to our panelists. Thank you. You've been listening to Connecticut Public's conversation about dementia caregiving. It was held in June at the Webb Dean Stevens Museum in Weathersfield. Our Latino communities reporter, Danila Donsell, moderated this panel with guests Tanya Mauer, Maria Canales, and Kobe McCaskill. This conversation is part of our ongoing coverage focused on caregiving and aging. You can learn more at ctpublic.org slash caregiving. I'm Catherine Shen, and this is where we live. Today's show was produced by Michaela Savitt, Connecticut Public's Aging and Caregiving Reporter. Special thanks to Eric Austin, Tess Terrible, Megan Boone, Patrick Scahill, and Lucy Napa Thanchol. Download where we live anytime on your favorite podcast app, and thank you all so much for listening.

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