EP#7 - Advocacy and Support

On this episode Eillen, Cherie, Becca, and Karen focus on the importance of advocacy and support in their lives as caregivers for spouses with Younger Onset Alzheimer's, and share advice, tips, and affirmations for their local, regional, and global communities.

1. Support & Resources:
    “If you or someone you know is navigating younger onset Alzheimer’s, you’re not alone. Reach out to local support groups, or contact the Alzheimer's Associationfor guidance and help.”
2. Join the Conversation:
    “Stay connected with others on the same journey. Visit www.survivingthenow.com to find more resources, share your story, or ask questions.”
3. Encouragement & Hope:
    “Remember, every moment matters. Stay connected, stay supported, and take each day one step at a time. We’re in this together.”
4. Call for Feedback:
    “We’d love to hear your thoughts and experiences. Email us at Survivingthenow.Alz@gmail.com or visit www.survivingthenow.com to share your story with the community.”

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Transcript

SPEAKER_02 0:33

So the information in this recording reflects Karen, Eileen, Becca, and Sherry's personal experiences and is for informational purposes only. It is not a substitute for professional medical advice. So welcome back to another episode of Surviving the Now. I'm Eileen Ware, joined by my co-hosts Karen Sandone, Sherry Davies, and Becca O'Neill. To everyone who joined us last month, thank you for being here again. And to those here for the very first time, we're so glad you found us. Tonight's conversation centers around advocacy, why it matters, how each of us became involved, and how sharing our stories continues to raise awareness and understanding of younger onset Alzheimer's. Advocacy can take many forms. Sometimes it's speaking publicly, sometimes it's supporting another caregiver. And sometimes it's simply having the courage to share the truth about what this journey really looks like. We know that sharing personal experiences can be vulnerable, but it can also be incredibly powerful. Every story shared helps break stigma, builds understanding, and reminds others walking this path that they are not alone. Our hope tonight is that these conversations help strengthen connections within this community, offer encouragement, and inspire each of us to continue using our voices in whatever way feels meaningful and possible. And as we move through tonight's session, another reminder that your audio will be muted. But we want you to participate through the chat, ask questions, share your thoughts and experiences. When we first created Surviving the Now, our goal was simple: to build a community where no one navigating the younger onset Alzheimer's journey would feel isolated or unseen. What has grown from that vision has become a true source of strength, understanding, and purpose. Not just for us, but for so many families and caregivers. We're really grateful you've chosen to spend the time with us tonight, and we hope you leave this conversation feeling supported, connected, and empowered, knowing that your story, your voice, and your advocacy matters more than you may realize. So let's get started. So I'm gonna turn it over to Karen, um, who is gonna give a little bit of background on why advocacy matters.

SPEAKER_00 2:54

We wanted to talk about advocacy because it was interesting. Two weeks ago, my sons had a conversation with me, and they said, Mom, your life is work and Alzheimer's. That's it. What are you doing for you? And it can't all be work and Alzheimer's. And I really thought about that because my kids are right. When we got the diagnosis, what I started doing is sharing our story. So some of you may be private about it, and that is okay. I was private too, and then my stepchildren started sharing our story, and then we started helping people, and again, that led us all to you. It's really a personal decision, but my decision led me also to the Alzheimer's Association, to Advocacy, to the Party in Purple in the Delaware Valley, the Alzheimer's Impact Movement, and then eventually to the women's Alzheimer's movement. We created Sand Own Strong. I met these wonderful women, Eileen, Becca, and Sherry. We created Surviving the Now. And in the beginning, I dealt with it thinking I had a lot of time. I thought, my husband is very young and fit. We can do this. Give me 10 years, we'll find a cure. Not understanding that for him, his progression has been very rapid. Unfortunately, the story that I thought I was telling is much different than the reality. So, yes, uh is my life Alzheimer's? Yes. Is all of your life Alzheimer's? Yes. But I am trying to soul search a little, but really look and see if there are other things that I can do, like helping my kids with their new business and kind of just moving some things around. With that said, advocacy saved me from the grief that I've had this past two years. And I'm just telling you all that because I really think if you're interested, you should consider it. Look at your local chapters, and I know Eileen will talk about that later on. Our voices do matter. We are making a difference. I can't do it alone. All of us can certainly do it together. Advocacy creates connection, understanding, policy change, and hope. I still have a lot of hope. It might not be for us, but it's for some of you. Definitely for people across the country that are connected with us. There are individuals with younger onset that are moving slower than my husband in terms of the progression of the disease. They're taking Le Kembi, they're on denonab. Those are the individuals that hopefully we can help if your loved one has progressed faster. And again, the impact of storytelling. Later on, we'll talk a little bit about my most recent uh experience with the women's Alzheimer's movement. So many of us never expected to become advocates, but the journey has shown us how powerful we are. Truth be told, I know I've always had a big mouth. I've been told it's okay. Guess what? Now I'm using it for great, great reasons. So that's okay. Anyway, just wanted to share all of that with you because this journey is so hard, and you have to find things that will keep you going, maintain your level of sanity, and then if you do get involved, also try and have some kind of balance, which I know is hard. Um, Sherry, I'm gonna turn it over to you to discuss a little bit about your raising awareness and your stories.

SPEAKER_04 6:43

Sure. You know, I think what Karen said is absolutely spot on, which is like advocacy for me has been kind of like a bit of a lifeline and a lifesaver for me because you know, we we've been on the front end because Chris got diagnosed back in 2019 when medications and things where you had aerospt and you know some of the other ones that he had allergic reactions to. And so we didn't have access to Lakembi. And so, to give you a good example of what that looked like is when Lakembi first got approved by the FDA, the the Center for Medicaid and Medicare decided that they were not going to pay for it for Medicare and Medicaid patients. And the consequences of that is that private insurers would also not cover it. And so at the time, Chris was right in space where if we had taken Lakembi, that may have given us some more time where he was kind of stable in those early stages. So I was going to meetings and I was going to see politicians, and I was really angry and sad and upset that, you know, here was this medication that we should theoretically be able to access that could help him. And we couldn't get it because it just wasn't available to us. And then when it did become available, we live in upstate New York. We would have had to travel four hours to New York City to get it. So we didn't even have access to it. And the more and more I talked about it, the angrier I was at the time. But I can look back now and realize that, like any of you that have access to Lakembi, I was one of those big mouth voices like Karen talks about. I was one of those really loud voices that was like, this is not okay. You have to do this, you have to get this for people. And so some of you guys have been able to access that medication that we couldn't. But I think myself and probably however thousands of people that were doing the exact same thing, you know, the voice matters. Um, politicians started listening, they were able to change that. And so now Lakembi is covered by Medicare, Medicaid, and private insurance. And so that's just a really good example of why advocacy really matters. And that's on a big scale, right? It could be something as small as like sometimes I would just put out social media posts. So you don't have to do necessarily big things around it. But the four of us have decided to use our voices in different ways, and we've collaborated with other with other agencies and organizations. So I think almost all of us have done things for being patient, which is a great website that talks about Alzheimer's. So I've written a blog, we did, I've done a video that's not out yet. These guys have done videos, you know, we're trying to share our voices in other forums. Eileen, Karen, and I go to DC. I just went to Albany today. So we're talking to politicians pretty regularly. Becca is rocking the social media. I mean, like, that is important every day. Things that, you know, we're not necessarily talking about here, and you guys are reading, like palliative care. It's a great topic. Things that we have to talk about in the future, but you guys are getting at least a taste of maybe something that you should be thinking about. So encouraging, you know, I think encouraging you guys, and I know some of you, I know Cindy was in the Albany today with me. She came and used her voice with her representatives. And it's it can be scary, but you know, it's you're telling your story and you know that best. You're the expert of your life. You don't have to know policy, you don't have to know those things. And even if it's just in your community, right? Or you're talking to other people, you're educating people. And it's not our job to educate everyone who comes into contact with you. So I think really be mindful if you if you feel like you're just constantly educating people and it's not feeling good for you, you don't have to do that. It's not your job. You can tell them, go look it up, do whatever. But you know, when we're talking on a bigger scale, changing the way things are done in the Alzheimer's world, right? Being able to, maybe you're just maybe you're joining a clinical trial, right? Your partner's joining a clinical trial. That's still advocacy because you're putting yourself out there to change how this is going. And like Karen, I think I look forward, you know, Chris is not going to be impacted at this point in time by anything that happens. It's just not going to happen. But I have really great hopes for the future. Like my son, I think down the road, when you're looking at the blood tests that have just come out and all those things, he's 26. Well, he's about to be 26 years old. I think when he's in his 40s, he may not have to deal with the things that we did. And that's why it's really important for me to keep doing what I'm doing. Places we've done, being patient, voices of Alzheimer's. That's a one-man little not-for-profit. He is working to get policy, you know, things put. Jim is a great guy. Like he's trying to get these bills passed in his area. He's asked us to post things about it. It takes a simple like writing a letter, right? Or joining a, you know, if he's got a listserv, like putting it out. Another one that Karen and I just did was Grief Ladies. It's a podcast. Um, Kelly's actually a very good friend of mine. She is a grief therapist. And so Karen and I went on and talked about anticipatory grief. So not even in the politician world, we're doing other things to educate people. So any of those things are are things that we're doing currently.

SPEAKER_00 11:56

And and by the way, Sherry, it for anyone out there, if you're on Instagram, Facebook, follow being patient. They do look for other caregivers to do some type of blog or video. And if you're interested, it's very healing. Yeah. It's very great, it feels really good to share your story. So if you're interested, look up uh Deborah Kahn. She's amazing.

SPEAKER_02 12:22

I put in the chat the walk to end Alzheimer's was really how we started. Joining a lot just to raise awareness and have our family and friends be able to spend the day with us, getting a little bit of understanding of what it is and what it means. And and I think you you leave there feeling empowered and inspired to want to do more.

SPEAKER_04 12:43

And it creates community. And I think that's a piece of it. You know, that's the other piece of this is that if you're doing something once a year, you go to the walk, you're meeting other people that are in the Alzheimer's community, and maybe you're making a new friend that's going to be able to go, you know, do a call with you or go get a cup of coffee or something that you don't feel alone. So advocacy is not just like in the political realm. I mean, that's that's obviously a big part of it, but there's so many other elements that are really healing for it. And I just, you know, I find that when I go and talk to these people, I'm just telling my story over and over again and why it's important. And you can see on these people's faces when you do it from a political standpoint, you know, how they're taking your stories in because it matters. And a lot of them may not have any experience with Alzheimer's.

SPEAKER_02 13:30

Thanks, Sherry, for for that information and Karen. And it segues into a wonderful portion of our talk tonight about awards and recognition. And Karen and Sherry over the past two weeks have gotten a lot of notoriety, which has been amazing. So I'm gonna turn it over to Karen to talk about her time in Cleveland with Maria Schreiber, who I think is replacing us as her new bestie, maybe.

SPEAKER_00 14:01

She is definitely my new best friend. Sorry, everyone. Love you all.

SPEAKER_02 14:05

But yeah, Karen, turning over to you to talk about that um amazing day and accomplishment.

SPEAKER_00 14:10

And just so you know, just one thing before um I start talking about that. We're also doing, we just did a Sandone Strong event on April 25th, which is through their do what you love to end Alzheimer's campaign, the Alzheimer's Association. And over the past three years, I think we've raised over $100,000. So there's really a ton of things. And I'll tell you, the way your community comes together, we had 200 people in the pouring rain. Eileen, wasn't it a bit?

SPEAKER_02 14:38

Pouring rain.

SPEAKER_00 14:39

It was pouring. So there's definitely some other things that you can do. But yes, I just got back from Cleveland and I did a shout-out to all of us in the uh video, and it was an incredible experience. Maria Shriver was amazing. She's such a huge advocate for the women's Alzheimer's uh movement, which is now in collaboration with the Cleveland Clinic. So they talk a lot about women's comprehensive care. It was great. They did a five-minute video, and they did um I had to do a little speech and I won an award, and I cried backstage, but I think I pulled it together by the time I got up there. It was just a great experience. And I met Maria on Instagram, guys. I actually sent her a message to try and get her to be a guest speaker for Surviving the Now. So do not be surprised if we don't have her on next season when we get back uh with all of you after the summer. That's how I met her, and so we're gonna do great things with the women's Alzheimer's movement. Anyway, Sherry, go ahead.

SPEAKER_04 15:55

Yeah, and today I actually I'm I'm still in my suit because I just got back from Albany today. So I was um very proud to receive the Advocate of the Year from the New York State Alzheimer's Association, and it was a very meaningful day for me because um one of our local senators is actually a very good friend of mine from the last 30 years. He worked on the police department with my husband, Chris. And so Rob came over and gave a little speech about me, which caused me to cry very much at my table, and then I had to give a speech, but it was, you know, it's really meaningful to know that like the impact I've had even on the organization that they see the work you do. Because we do, you know, I've been doing this now for six years when this started right after Chris got diagnosed. And we're not obviously doing this for awards, but you know, when you the people that you care about, I have the Northeast New York chapter that I work with, there's some of these people that I love dearly, and they've been with me through this whole journey. And to know that they're like, we see how hard you're working for a cause like this was just really powerful. It was a really emotional day today. So I'm sorry, I'm gonna get I'm gonna go ahead again. So I'm like, but it was it was a beautiful day.

SPEAKER_02 17:09

We are so proud of you, proud to be um walking alongside this journey and part of surviving the now.

SPEAKER_00 17:17

So I I just want everybody, since you were not there, to understand my commitment to all of you. But I did say in my speech that we made a decision early on to share our story because, like so many families, we were thrown into an unexpected journey of uncertainty and heartbreak. And through this, when Anthony struggled to speak, I found my voice. And then I also said to every caregiver, I stand for all of us and I will never stop leading this mission. And I really mean that, and I think that has become the why and the reason I'm doing this. So you all have to figure out your why, and it could be a little bit of this, it could just be hanging with us, you know, once a month, whatever that may be. But I I obviously have have found this mission and I'm gonna stick to it. So, anywho, that's it.

SPEAKER_02 18:10

We're gonna segue into hearing a little bit from Becca on kind of how all of this advocacy and using our voices led us to the decision to start surviving the now.

SPEAKER_01 18:22

Yeah, so um, prior to my husband being diagnosed when I just knew something was wrong and all of the um first level of testing, sleep apnea, um, MRI, things like that, nothing showed anything, but there was clearly something wrong. I met Sherry through a friend of a friend. I was on a girls' weekend and was just talking about um my husband's symptoms and met Sherry, and then my husband was diagnosed. And um early on, having met her, like weeks before my husband was diagnosed, she gave me such valuable advice as I began walking this journey. It was an absolute lifeline for me, and I think um I don't want to speak for her, but having her know someone else who was in their 50s, whose husband was in their 50s, um, it was uh an instant connection point. Shortly after that, you know, Karen and her big voice on um TikTok. I connected with her, reached out to her, we started talking. I'd mentioned I had this friend Sherry, she'd mentioned she had this friend Eileen, and quite soon um the four of us began having calls every two weeks just talking about um symptoms, our experience, exhaustion, like all of the things that caregivers go through. But also early onset Alzheimer's was new to all of us. Like we had never really heard about Alzheimer's in your 50s before. Um, so what started as a connection and a support group quickly became something more in our talks, we realized that there was such a huge void um in the young younger onset support community for people like us, younger families still working, some people raising children and not fitting into the traditional dementia support spaces where, you know, at that time, if you had called the Alzheimer's Association um and were in a support group, the the people didn't look like us. More and more people honestly were reaching out to Karen because her social media following at that point was, you know, 150,000 people following her, people reaching out to her and looking for support and understanding. And it became clear that there was a real need for a safe space where caregivers could be seen and understood. So um we decided to combine our different strengths and the common goal of awareness, and we created Surviving the Now, a place where you guys have been coming. This is episode seven, where you can learn, then support one another, and we can raise awareness about Alzheimer's. And what has happened since we started this back in uh September, I think our first one might have been in October. Today it's honestly exceeded anything that we could have imagined. Eileen will touch on this in a few minutes, but we now have eight regional small support groups where everyone in those groups, there might be up to 10 or 11 people, has a voice, no one's on mute, everyone can share their own experiences. We've had over 3,000 podcast downloads in 18 countries, over 35,000 weekly social media views on our website, um, Facebook, Instagram. And then we have a growing community of caregivers, just like everyone on this call, reminding each other that we are. Not alone and we are stronger together.

SPEAKER_02 22:03

Incredible, Becca. And just to think that we said when we were just even thinking about what should we call this podcast, we said if we could help one family, we felt like we were doing something. And this is incredible. And I'm so proud to be part of it. So as we continue to talk about advocacy, um, I know that Sherry won't be able to join us, but Karen and I, and probably some of you on the call, will be heading to Capitol Hill in June as part of the Alzheimer's Impact movement. Um, and its aim allows volunteer advocates to partner with members of the organization to impress upon policymakers the growing crisis of Alzheimer's. And all of us need to emphasize the growing crisis that is younger onset Alzheimer's. So I just kind of want to highlight the two. I reached out to my partners in the state of New Jersey, for which I'm an ambassador for AINE. And the two acts that we're really gonna push to have passed this year, I think really impact younger onset and can really help lead to early detection and early diagnosis. Um, and so the first one is called the ASAP Act, it's Alzheimer Screening and Prevention Act. And literally, they've made a tagline this year saying this is our mammogram moment for Alzheimer's. Passing of this act would permit Medicare to cover the Alzheimer's blood tests. These blood tests help detect Alzheimer's before symptoms appear, enabling more effective treatment. This act is critical because under current law, Medicare is prohibited from covering FDA-approved screening tests unless Congress approves. So it's not a when can this happen? It's we need Congress to approve so this can happen. Um, so it's a legal barrier, not a scientific one. So if you see any information about the ASAP Act, call your local senators, congressmen, and push for passing of that. And then the next one is called the Adapt Act, accelerating access to dementia and Alzheimer's provider training. It would provide grants to expand virtual dementia training for primary care physicians, helping them to better understand detection, diagnosis, care, and treatment. So if we have better prepared primary care physicians who, when we go to the doctor with our loved ones and say they're having cognitive impairment, something's wrong, they're not gonna tell us it's just stress or a midlife crisis. They're actually gonna probably think about maybe I should order the blood test or let's test for potential cognitive impairment or Alzheimer's disease. So the funding, if approved, would be a million dollars per year for the next five years to really spearhead this um workforce development, which is very, very promising. And I do always say that if we had these tests and acts passed five years ago, I think Steve would still be here with us. So I always think about that. And I don't want any family to have to go through the journey, and we're all on it. So if we can make a change, we will. All right, so now I'm gonna talk about our small group update. So over the past, probably the past two months, we decided that we wanted to provide a platform in a smaller way to start connecting all of you, the way Sherry, Becca, Karen, and I were connected. And so to date, we have um eight existing groups. We have a PA New Jersey because there's so many people in that group. We have a New England region, small group, a New York State, a South region inclusive of um Florida, North Carolina, the Carolinas, a South region, a Southeast region, Great Lakes region, Midwest, and next week Sherry and I are launching the West Coast region. So I am so proud that we are able to do this for everyone. If you are interested in joining, you can send an email to our Surviving the Now groups, our the Surviving the Now email with your name, cell phone, city and state, and we will put you together with a group. I find it rewarding. I think everyone has the chance to tell their story. It's we've also created text groups so people can ask questions or phone a friend for something that they may need in the moment. It's really taken off, and I'm sure it will continue to grow.

SPEAKER_00 26:54

And it is a different format because they're so small. We all have an opportunity to chat, tell our story. Um, so it's definitely a different format.

SPEAKER_04 27:04

Send either an email or go on to the website where it says contact us and you can leave your your name, your email, and your cell phone number. If you send it to the website, I get it, and then I pass it on to Eileen because she's got the master list. It's kind of not state specific, it's more like region specific. So like we have like East Coast, Great Lakes, that kind of thing. So we we will figure out where to put all of you. So don't worry about if your state is not necessarily like one of them. Like we have a New York state one, but like we have a New England one.

SPEAKER_02 27:34

So and as we grow, we know that we'll probably have to branch out and make them smaller into states or areas, but yeah, it's been great just to get people connected and talking. And I know that a few people have connected offline and have gone to lunch or have met up for coffee, which is really what we wanted to connect people to have them do.

SPEAKER_04 27:54

And I can tell you, I'm one of those people because Cindy, who's here, Cindy and I met two weeks ago and we had lunch together and we had a lovely time. It was amazing. So you know, just like right, like those connections and knowing you're not alone and having people. I mean, like Becca talked earlier when we first met, she was 100% correct. I had gone four years and almost four years and didn't know a single person that had younger onset. Oh my god. And like when she came into my life, I was like, oh my gosh. And and yes, in the beginning, it was like I was helping her kind of because I'd already gone through so much of it. But our friendship grew and it was so beautiful to have her in my life. And then I remember the day she called me and she was like, So this woman, Karen, she's on TikTok, and she I said, What's her name? And she's and I went on TikTok and I was like, Oh my god, Becca. I'm like, I'm following her too. Like, so I already knew who, like from social media who Karen was. But like again, not feeling alone was really such a beautiful thing, and just having that community, right? So even if you find one other person, right? Like that's just such a lifeline, it's such a gift. I think here's some feedback from the from Becky, who's in the Great Lakes group, and says, I found additional things to advocate for. Beth shared about the village being built in Wisconsin. Oh, oh, I just lost my sorry, it just moved up on me.

SPEAKER_02 29:14

So I'm the Great Lakes group. I have found additional things to advocate for. Beth shared about the village being built in Wisconsin. Two months ago, I was so ready to get my husband placed, but now I have found a potential site and I don't want to place him. I feel it's inhumane. He will have to give up his dog and me, his safe person. So I feel I'm just on the edge of the creek trying to jump to the other side, but not knowing it also jumped, not knowing if it will make it, if I will make it or not. I am just at a loss. You will make it. Sometimes it's one minute at a time, but you will make it.

SPEAKER_01 29:50

Yeah, certainly.

SPEAKER_04 29:51

And this yeah, and this is where like being in those groups, like that Great Lakes group, right? Like that's text your friends in there, right? Like start to get to really know each other. Like it doesn't have to be a once-a-week thing. I mean, our text group is daily, like the four of us, it's all day, you know. And I'm I'm the only non-mourning person in the group, so they're usually hearing from me much later, but they're all up early and they're all texting. And but like, you know, we're all catching up, we're all kind of keeping, but it it makes a huge difference to have like I know if something happens here, I can reach out to the three of them and just have that support. And it's it's so important.

SPEAKER_02 30:28

Becca, you want to turn over to question and answers?

SPEAKER_01 30:30

Yeah, so I'm gonna go through some questions that we had um in the registration form, but one that I keep seeing is how do you fill their days surviving the boredom? And what do you do? Because most of us are still working. Um, and I will start off by saying, you know, my husband is uh just turned 54. He was diagnosed at 51 and he spends a lot of time walking the dog. Um, but he is still really physically active and plays tennis at the International Tennis Hall of Fame. But what's most interesting is that the group that he plays with, he calls them the geyser league because most of them are retired men in their 60s and early 70s. So he's kind of lucked out in a way where they have accepted him because they're all, you know, at an aged mild cognitive impairment. And here's my husband with moderate impairment. And um, so he has people that he can go with because most if your husband or your wife is not working and you are, most people at our age are still working. So if anyone wants to add to that on how you fill your spouse's time, I know some people have in-home care, but if Sherry or Karen I I will actually say something.

SPEAKER_04 31:53

I I've thought a lot about this because I worry about like what that looks like. And and I think what I've come to the realization, so Chris, um, for context for anyone who doesn't know, he's probably in the mid-stages of six, which is he's having difficulty with he doesn't get dressed on his own, like showering, all that kind of stuff. Activities of daily living are pretty difficult. And I always worried he spends a lot of time watching TV. And so I've been thinking about like for me, that would be a horrible way to spend the day. But I've realized just recently, like, if I kind of can switch up some of the things he's watching, and it has to be like very much in his world of like the things that he thinks are funny, he's incredibly happy with the way things are. So I perceive it one way, which is that he's he should be bored and it should be different. But when I talk to him and I'll ask him, I'm like, oh, wasn't that funny? Are you having a good time? Or are you happy? He's like, I'm having a great time. He thinks he's having a great time, and I've had to really wrap my head around what I perceive it to be as boredom because it would bore me to death. It it's boring me to death a lot of times. He is not seeing it the same way. He thinks he's so I think you have to kind of look at what your situation is. Is your spouse actually bored or do you perceive it as they're being bored? Now, it could be the answer is yes, they are bored. And so then it's finding things. But like we can break up the day. He's a big sports guy, so every Monday through Friday is Boomer and Geo in the morning. And then it's we kind of have a routine of how we run through the day. We take a walk, right? We have lunch, and then he's gonna take a nap, and then he's gonna watch some of these 90 sitcoms that are easy to kind of take in, characters are all the same, stuff like that. But as much as that's routine, he loves it and has a great time. So I had to kind of shift my own thinking of that's boredom to he's actually really happy. You know, he he he says he's happy. I have to take that as a grain of salt, right? But like he sees it differently, and so I think that's a really important thing to think about.

SPEAKER_00 33:56

I I agree, and I think consistency. My husband is around a 60, he's heading into probably the incontinence level of stage six, doesn't really know what what's going on in terms of whether or not he has the disease or not, and so consistency is very important. If he sits in front of the TV all morning and watches the news, he's content. And as long as the day is consistent, like Sherry said, I'm not worried about him being bored. I'm more worried about him wandering because that's what we're going through right now. He's wandering everywhere. As a matter of fact, the police were here this morning because the alarm was set off. So, you know, those are things that I'm more concerned about than whether or not he's bored. But it's a great question.

SPEAKER_01 34:43

Um, there's another uh question on here is how do you know when you need more help and choosing caregivers? I'm not at that stage yet, but that seems to be asked over and over again. I do know that we have someone in our New England group, uh Mo Griffin, and I can see you on here, um, who has said that she has gone through in the New England area, but like every memory care center or whatnot. So maybe I can get her to write a little blog or something for us for our survival webpage. But I'm not at that stage yet.

SPEAKER_02 35:20

And I know Becca, I can take this a little bit with Steve. When Steve is alive, we had two different caregivers. We had two caregivers. Um it's hard. You have to sometimes you go through a few, and it's not because they're not knowledgeable. It's for us, Steve did not like the male caregivers. It it it just did not jive with him. And so we were blessed to find two caregivers, one through an agency and one through uh word of mouth, who ended up being my lifeline. I still had to work. I had two young boys at home, and I needed help. It it it takes a village. I knew I needed help when Steve couldn't. I think it was when he started not being able to dress himself, is when I said, I need someone in here because I couldn't. I always felt like my brain was split into fours trying to work and focus so I could bring him a paycheck, but also worry about him take care of him. So having the caregiver in the house while I worked, even if I was in my home office, um, helped me um just have a little peace of mind. And they would go on walks and we tried a lot of the games and it would frustrate him. And he was like, I I he couldn't do it. His vision was so off during his journey, his vision was really impacted, and so using technology, but he couldn't watch the news because he would perseverate on if there was a house fire on the news, he would say, Is our house gonna go on fire? So we kept so we literally taped every episode I could of um let's make a deal and the price is right, and that's what we watched on repeat. Yeah, and music music was a very fun thing in our house.

SPEAKER_00 37:07

Well, and I think uh go ahead, Sherry.

SPEAKER_04 37:09

No, I was gonna say I'm early, so we're in the early parts of just having caregiving. So I have part-time caregiving, and what I ended up doing was I kind of started with it kind of the same thing. Chris can't really get dressed anymore. So I was like, okay, I probably need to have somebody here when I'm at work. I ended up kind of just perusing who was in my social circle, and Chris's cousin had um small kids who the youngest one was just going into kindergarten and she was uh she was a stay-at-home mom. And so I kind of was like, hey, like, are you looking for a job? Would you like to come to the house? And so I got really fortunate because that was the case, but sometimes looking in who's in your circle of like who maybe isn't working or who wants a job or things like that. I know Karen can talk about more of what you do, but I know right now what I did in this first stage was I really looked at like who's in my circle, and like I got super lucky where Kate was like, Yep, I will I'll come and take care of him, so I pay her to come into the house.

SPEAKER_00 38:07

Yeah, and I'll I'll talk about it from a different angle, and that is like when did I think he could not be alone anymore? I noticed uh probably about a year ago that Anthony stopped real it was really August of 2025 when he had his seizures, but a little bit before then, it was starting to get unsafe. Or I was worried about him turning the oven on or the you know, the the cooktop. Um he wasn't feeding himself anymore. He was waiting and just not eating. He wasn't really finding how to walk to the gym. So there were definite signs that um he no longer could be by himself. So that was very um devastating. Now I have a support system of family members who come in Monday, Tuesday, and Wednesday. I work remotely Thursday, and then I have a nurse on Friday. Not sure how long that will last because when you get into the later stages, harder to lift your loved one. You know, what do you do about incontinence? So it gets a little bit more difficult. I'm not sure his sisters can deal with all that. Um, and then now my big decision is caregiving in the home or memory care. And that's a really tough decision because everyone's putting pressure on me to do caregiving in the home, but then they go home.

SPEAKER_01 39:35

Yeah, correct.

SPEAKER_00 39:36

That's how I'm here, right? And what I've noticed about having caregivers is I do showers, teeth, feet, I do everything before they get here. I spend two hours in the morning. Well, what's the point? Right, right? Because but I don't want I want to do that for him. So if I have somebody at the house, I don't know if that will change, but memory care is really tough for all of us. People are you usually in their 80s or they're in later life, and so you have a 50, 60-year-old, 70-year-old in these areas with much older people. So I don't know about anybody else's experience, but I'm gonna try to keep it at home, keep our caregiving at home. I'm gonna try, but we'll see how that goes.

SPEAKER_02 40:26

And there's no very strong decision.

SPEAKER_00 40:29

Exactly. There's no era.

SPEAKER_04 40:30

But when I was coming home from Albany today, um the friend that I went with is a social worker in an elder care attorney firm, and she's the social worker there, and there is a uh day treatment program, literally right, it's like four offices down from mine. And she'd asked me, she's like, you know, could Chris go to that? And I said, you know, it's interesting right now, uh, the way it's it's actually an old um outlet village where all the offices are. So a lot of the we have a daycare in there, and then this other agency. So they walk a lot on the inside. And I said to her, I see the people that are currently at the day program and they're all elderly. And I said, Chris is 58 years old. I'm like, these people, I'm looking at them, they're in their their late 70s that are all with them. I'm like, how would that work? I'm like, he's still just aware enough that that would probably be a problem. So like I can't really access that service. Whereas if maybe a little farther down and he didn't know enough, maybe I would be able to use that in the future. But right now, I I couldn't bring him to work, drop him off there, and have him stay for the day. He'd he'd be over at my office 20 minutes later, banging on the door with somebody, like take him home. So, you know, there are programs like that out there though.

SPEAKER_00 41:42

There's some people on this call who are alone, like have no one to support. Uh, I would reach out again, reach out to the Alzheimer's Association, try to reach out to your community, see if somebody you could get volunteers to help you. You're a local church. A local church. I mean, you have to ask for help. It's way too much for one person. You know, the kids try to show up when they can, but they have their own lives, so I don't want to rely on them. Definitely, if you're alone doing this, really look at your community options, okay?

SPEAKER_04 42:20

And sometimes the other one is if you also have senior centers, things like that, some of these have connections with other programs that you may qualify for. So in New York, there's a guide program. I don't know if it's federal, but I know it's in New York, where you can get um some respite a few hours a week, which again, it's not a lot, but it's still something. That is through actually our local um senior organization that's up, you know, two cities away from me. So there may be things that you can access that you kind of got to think outside the box a little bit of like, okay, who's really doing the stuff with Alzheimer's? It might be those senior centers. And so they may have options for you that they can kind of help point you in the right direction. Or they may have people on staff that you know that are gonna do that are caregivers that could help you.

SPEAKER_00 43:09

And financially, the the bottom line is there's not much help for us. We have to figure it out. I do encourage other people who are younger now to look into long-term care because I did not do that. And so Yeah, we didn't either. But anyway, um, Becca, any other questions? I think we might have time for one more.

SPEAKER_01 43:28

Yeah, there were two um that stood out. There were several questions on the registrations about intimacy. Um, and uh I I we talked a lot about that in our episode six, um, which you can go to our website and listen to it there. And you can go back to any of our other podcasts and and see what we've been talking about. But the one I think is a good one um to end on right now, which is how do you still choose to live a meaningful Life. And Karen, I think you touched on this earlier where your kids have told you aside. And that, you know, we are we are walking along this journey beside our significant other. And we are all just trying to do the best that we can do. But we do have to remember that we also have a life. We have to survive this so we can be there for the people that need us on the other side. So for me, that is going to be my very healthy right now aging parents, my 20, two, 20-year-old children, other friends and um family members. So we just need to remember.

SPEAKER_00 44:43

Absolutely. This is a rough season for all of us. We're all in a really tough season of unknowns. We have no idea how long we're in this. We don't know where, in some cases, we don't know where it's going. Although I guess we can assume that we can follow the stages. Day by day, it's just really important to take care of yourself and make sure that you're staying healthy some way. Whatever that is. We talked about walking. We talk, and I don't have a lot of time either. So I know you're like, well, when am I going to find time? Exactly. I know. I I understand that, but again, you don't want your life to be work and Alzheimer's.

SPEAKER_01 45:30

I I have to say, Karen, I uh this is just funny because you know, sometimes I feel like I can't leave the house even though I can, but I I love being in the sauna and I don't have room for one in my house. So I bought a sauna bag that you can get in and zip it up, and it goes up to 140 degrees. So I could just be in my house and in my sauna bag, and that brings me a lot of peace, I will say.

SPEAKER_04 45:57

I love that. I I just started Friends of Mine. I'm not technically in a book club because obviously I don't have time for a book club, but some of the girls I work with have been swapping books, and so I've been taking advantage, like got on their list. Eileen and I have a list too, and so got on a list of what are all the different books they're reading. And so they're leaving me now books when they're done. So I have free books from them of like really awesome things to read. And it's take I'm a fast reader, so I used to read books really, really quick and run through them. Where now it's taking me three weeks to read a book. It's fine, but I'm still trying to take 20 minutes or so to read a little bit just to kind of recoup some of like what we're talking about, that feeling of like normalcy, like this is like what my life used to look like. So it's it's gonna morph and change as you go through this, right? Like Becca's got some more time on her hands, right? Like your stage is different where you know I'm farther down the road, like Karen is, and so to go somewhere is very difficult. Like to just go to the grocery store, like those things. So it does change as as time goes along of what you can do and what you're capable of doing.

SPEAKER_02 47:04

Uh I just want to add, I'm 16 months now since Steve's passing, and it doesn't get easier. Um, I think I'm still trying to figure out who I am, and um we love you, Eileen. For so long, but you you will survive and you will make it to the other side um one day at a time. And yeah, this is this is part of my healing journey, helping all of you. But it's not easy.

SPEAKER_00 47:33

Yeah, I I I I think that you're a great role model for us for at least understanding what to expect if we are, you know, thinking about that. And I don't know if all of you think about it, but I do. I always say, Well, where am I gonna be next year? And what and I do have to stop my mind from doing that, but how do you? How do you? It's so hard. We are moving, we just sold our house, and you know, I don't want to. I don't want to move, but I have to, and so then I'm thinking, okay, well, we move in October. What is that gonna look like? So all of those things, you know, really can play tricks on us. I just don't want all of you to suffer from the same thing, and I know you are, and that is just not having any kind of balance in your life.

SPEAKER_01 48:24

Um, I think we're close to time. So I just wanted to end on. I think Eileen's gonna end.

SPEAKER_02 48:29

Yeah, I'm gonna bring us home. So as we close tonight's conversation, um, we all want to seriously sincerely thank you um for being here for being part of our surviving the now community. Um, whether you shared in the chat, listen quietly, or simply showed up tonight, your presence matters more than you know. And if you can use your voice, share your story, and continue to advocate for younger onset Alzheimer's. And we are grateful for all of you, and we are happy that you have joined us. So thank you.

SPEAKER_01 49:00

All right, so we'll see you in June. Right? June will be our last one, yeah, for the summer.

SPEAKER_00 49:05

Yeah, love you all. Have great weeks. And we'll see you in the small groups.

SPEAKER_01 49:12

All right, see ya. Bye. Bye.