EP #8 Losing A Parent Twice

On this episode Cherie, Becca, Eileen, and Karen focus on the importance of advocacy but bring some special guests to discuss their perspective on 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.”

Check out all social links for "Surviving the Now”! 

LINKS HERE

Transcript

SPEAKER_03 0:33

All right. Hi, welcome everybody. Thank you for being here with us tonight on this very hot day. I don't know where you guys are, but in upstate New York, it's incredibly warm. I'd like to welcome all of you. I am Sherry Davies along here with Eileen Ware, Becca O'Neill, and Karen Sandone. And we have a really special night tonight because we have special guests with us. We will introduce them to you in a little bit. But right now, we want to thank everyone who's been with us along this ride so far. And for anybody who's new, welcome. If you haven't listened to us before, we are on Spotify and Apple. You can find all our previous podcasts there. So we encourage you to go back and listen to those. So tonight we are going to do kind of two sections. And our first one's on advocacy, and then our second one is our special guests. So tonight we really want to have Eileen and Karen talk about they just went to forum in Washington, D.C. and just kind of give you guys a little overview of what that looks like and um how that fits into advocacy that we talked about last week. So which one of you guys wants to start?

SPEAKER_01 1:32

Karen, you have to leave. Oh, I'll start. Okay. So um Karen and I made the train ride down from Wilmington to Washington, D.C. and spent three days meeting with congressional members, our senators, our representatives. Obviously, Karen was with Pennsylvania and I was with New Jersey, and I see Glenn on here who was with Delaware. For me, it was kind of emotional when I first got there because I've seen so many people now living with early onset Alzheimer's or younger onset Alzheimer's. And I just thought to myself, my if all of this was available four and a half years ago, Steve might still be here today. And so that was really emotional. But then I got to the point where sharing our story just felt so empowering, and seeing the people listening to us just really felt like they cared. And so we we talked about it on our video, but it it's just if you ever have a chance to share your story, get to DC as part of the Alzheimer's Impact movement, it's just overwhelming, but you leave so invigorated, like you're gonna change the world. And and I I keep saying, I'm going to die on the hill that's gonna find a cure for this for our family, so that no one else has to experience what we're all going through.

SPEAKER_04 2:56

And just to add to that, first it was really exciting to be on the hill to actually advocate and tell our story in front of the senators and the congressmen. But I will tell you to also be in a room with 1,200 individuals who have been impacted by this disease. I spoke to spouses who left who lost their loved ones. There were 60 attendees there with Alzheimer's, which is amazing. They all stood up and we cried, right? Because they're all they were all at different parts of their journey, but they knew we were all there for them, and everyone there had a story, and everyone there could relate to all of us. So if you want to get involved, you really have to start with your local chapter of the Alzheimer's Association. Call and ask for AIM. You can get involved with the AIM, which is the Alzheimer's Impact Movement. But I also do local meetings with our congressmen here. Uh we start there, and then of course, once a year we we head to Washington. 1,200 people in purple storm the Washington in a good way. We weren't protesting, we were storming with our mission, and we had 26 senators and congressmen co-sponsor the ASAP bill while we were there, which is awesome. And so the ASAP will give everyone the ability to have Medicare coverage, and then private insurance will follow for the blood test that gives you early detection for Alzheimer's. And that is so crucial now because we have Lecembi and Anonab and hopefully other drugs in the near future that will slow this down.

SPEAKER_03 4:51

If you're interested, email us. I wasn't able to go to DC this year. I went the last two years, but leaving Chris this year wasn't an option. So I ended up going to the New York State Capitol for State Advocacy Day. And so you're talking about different bills within each of your states, but you're doing the same thing. And so I am a local, um, my representative in the area, I'm her ambassador, and so that's for federal, but getting involved in statewide is also an option. So again, call your local Alzheimer's Association chapter and they will get you hooked up. So even things like I do advocacy day for the in our local Alzheimer's walk, and so I man the tent with somebody else and we talk to people about joining. And so that's another way. If you don't want to, if you can't really connect with them, the walks will be coming up in the fall. You can always get involved that way because there's always someone there talking about advocacy. And so, Becca, I know we want to talk the another section of advocacy.

SPEAKER_05 5:47

I just wanted to say that um I am a behind-the-scenes person. My voice is not as uh loud, and I don't have the the time to do that as I work in a school. But being just behind your keyboard and using your voice and sharing your story to your own network of people is very courageous. I think that we've seen over the past eight or nine months since we've been doing this since podcast one to now podcast eight, so many of you have opened up, shared your stories. And I have seen the reactions on some of your stories where people just are unaware of the impact of early onset Alzheimer's. So it even if you can't do it in a large way, use your voice in your own way and share your story so one other person will hear you and they might talk about it, someone else might talk about it. Any way to share our stories is going to make a big difference.

SPEAKER_01 6:46

And Karen and I made it a point to everyone we talked about to share our Surviving the Now podcast, our website.

SPEAKER_04 6:54

We did. The hard part about this, and I actually spoke to someone last night, I don't know if she joined us tonight. Um, some of us want to stay private, and that is okay too. If you are not ready, you know, you can do what you need to do for your family. It's really important to follow your own journey. I know it helped me cope. I know our daughters got on very early on social media and really broke the stigma of younger onset and started sharing our story, and it just evolved into such an amazing connection with all of you. So it's not for everyone, but I do think it gives you a little bit of relief. We are the only ones who know what we're going through.

SPEAKER_03 7:38

Today, as Karen just started to allude to, we have some very special guests with us, and of the our kids that didn't be able to make it today, um, we have comments from them that are we're going to share with you. And we thought this was a really important topic because we've really covered a lot of areas over the last seven episodes. And the one thing we really haven't talked about is our kids' perspective on what it's like to have their parents have younger onset Alzheimer's. So we were incredibly grateful that all our kids participated in one way or another, whether they're here. I know Aiden uh showed up shortly ago, and we've got the girls here. So we're gonna go through um family by family, we're gonna do some introductions, and we hope that you know you get something uh for yourselves of maybe some perspective of maybe what your kids are going through or maybe conversations you want to have with your kids at some point if something resonates with you. So, first off, we have Eileen and she's gonna introduce uh who and her family is gonna be providing some information today.

SPEAKER_01 8:36

Well, I couldn't get two teenage boys to join the podcast with us tonight, so I do have their answers. Um, and just as a reminder, Cole is now 16 and he was 10 at the time of Steve's diagnosis, and Jake is now 19 and he was 13 at the time of Steve's diagnosis. So we asked Cole, or I asked Cole, how did you handle being a young child and finding out about your dad's Alzheimer's? And his response, when my dad was diagnosed, I felt like I was really too young to understand what it meant. I knew it was bad news when you told me, but I didn't grasp how serious it actually was. I missed out on a lot. Most specifically making awesome memories with dad as he was always my coach and building a stronger relationship with him. I was only 10 when he was diagnosed, so I was still figuring out who I was. One of the hardest parts for me was knowing that he wouldn't be around forever. I tried to make the most of the time we had together, but it was tough because even the smallest things would really stress him out. For example, I remember he was always saying he wanted to go home even though he was at home. Crowds bothered him, so I knew it was really tough coming to our football games at the end, but he still came anyway. So that was Cole. And then Jake was asked, what were some of the difficulties you had during the last few years of his disease? And I'll preface this with Jake is not a man of many words, so even getting this short blurb was a miracle. Um, Jake said one of the hardest things about the last few years of dad's illness was watching him decline a little more each day. As his condition worsened, he lost the ability to do so many things on his own. I remember when he couldn't even feed himself during meals anymore and needed our help. It was heartbreaking to see how the disease affected his memory and thinking. There were days when he didn't even recognize me. Watching him lose abilities that used to come so easily was incredibly painful, and I really miss my dad every day.

SPEAKER_03 10:48

And that's really hard. They were so young, right? And that's a it's it's a perspective that the other three of us don't have. Our kids were older when that happened. So I you know, really thank them for joining. You know, even though they weren't on the video, right? They participated. One day, yeah. Yeah, exactly. So one day, yep. Thank you so much. All right, so next up we have Karen.

SPEAKER_04 11:11

Yes, and so just to give you a quick background, uh Anthony and I have a blended family of six children. Uh oh my goodness, Brittany, are you 34 now? Sorry, am I calling you out? So uh Anthony has two daughters and a son. Brittany is on the call, she's 34. His son Anthony turned 31 today, and then Marissa is 29. Oh, God, we're getting old.

SPEAKER_07 11:40

And then I have dying in July. Don't get on. Okay, I'm sorry.

SPEAKER_04 11:43

I'll give you one more month, honey. I'm sorry. Uh and then I have three sons, uh, 31, 29, and 27. And so obviously it's been a look it's been very challenging for Anthony's children. And what I think we realize through this process is we are both grieving differently, and we have to respect each other's grief because it's not it's not something I understand, and I don't know if they understand, but we have to work together. And so we've been really trying as a family to work on those things um because we're all just you know grieving this together. Um, but actually, Brittany, do you have the the question written out?

SPEAKER_06 12:27

Um, yeah. There's like a couple that have like parts to it. So you want to read it?

SPEAKER_07 12:33

Yeah, you can read it. So it says, as the child of a parent diagnosed with younger onset Alzheimer's at such a young age, how have you been coping with your own grief throughout this journey? How was your relationship with your dad with your parent changed? And what has helped you navigate the emotions that come with watching someone you love with this disease?

SPEAKER_06 12:53

Okay, yeah. So I, Rissa, I can start. I can just do a quick intro. Like Karen said, I'm 34. Um I um am an elementary school special education teacher. Actually, Risa and I work together at the same school, which is really cool. And just like some background. I never knew why I wanted to be a special ed teacher, but I truly believe that God has a plan. And this kind of feels like it was a part of his plan. There was no no one in our family, no one's a teacher, no one's in special ed, but I just felt a calling to this avenue. And so much of what I learned and so much of what we deal with on a daily basis is exactly what dad needs from us. So it's it's just kind of cool. So for um the first part, just talking about when dad was first diagnosed. So I was gosh, 31, I guess, when dad was first diagnosed. So I was a little bit older. Iileen, I don't know how your kids handled it at such a young age, but even their words is I I I feel that so deeply. And like there's not a group or a network of kids sharing those feelings, but gosh, I felt that like so deeply. But grief is really unpredictable, and it comes when you least inspect it. And for me, I've been blessed to not have to really grieve anyone. Um, I still had all my grandparents. I thankfully hadn't had any losses. But this was a different kind of grief. And what I've learned is this is called anticipatory grief, which I hadn't heard before. So it's really mourning dad, but he's right in front of me. And I did a social media post for this. Like if I'm missing dad or I'm upset about dad, I just call. Like I can call him, I can see his face, I can hear his voice. But then you're also grieving all the things that you know aren't going to come, right? Like um seeing my kids grow up, or you know, in a couple years, is he still gonna be here where I can just pick up the phone and call him? So all those little things and they hit you when you least expect it. Um, and like Karen said, we all grieve differently. So I'm one that likes to talk about it. I like to cry about it, I like to be in that sadness because it helps me process. Whereas, like our brother is very quiet about it, he does it in his own way. I rarely see him cry, but he cries a lot. So it's really just like if I had advice, it would be find a way that works for you because you're going to grieve and allow yourself to do that because we're all grieving in a different way. Uh, Ris, did I answer both parts of those questions? Yeah, basically. Yeah.

SPEAKER_07 15:34

Navigating your emotion.

SPEAKER_06 15:36

Did you want to get on to that?

SPEAKER_07 15:37

I kind of I was just telling everybody before we came on, I probably wrote like a book about how I answer these questions, just because once I got started typing and answering the questions, everything just like poured out. I kind of answered it more like personal, like what I'm dealing with at the moment. Um, and just to give background, like Britt, I'm a special ed teacher too. So like I did owe everything she said. Um, we're using that experience with dad. But again, like she said, it's the grief that he's still here, but we're losing him slowly and watching us lose him slowly. And then just reading what I wrote. So one of the hardest things for me at the moment is knowing that my dad's never going to meet my kids. I'm so grateful that he has relationships with Britney and Anthony's children, and I'm like, it's the best thing being able to watch that. But something that, and Karen, don't cry because you're gonna make me cry. But I'm selfishly, I won't get that, and that sucks. Um, he's not going to see me carry my first baby, welcome them into the world, be their grandfather, like Britt said, he was at our sporting events our entire life. Our grandparents were at our sporting events. Um, he won't get that. Something else that's really I'm grieving and that changed my relationship with my dad is if some of you know I'm getting married this fall, and I'm very grateful that he's going to be there physically. We made our wedding this fall instead of pushing it back because I wanted my father to be there. But at the same time, he's not going to be present in the moment um like he would be before Alzheimer's. So, like I, instead of him walking me down the aisle, I'm probably going to be walking my dad down the aisle, which is fine, you know. I have to take it what it is and be thankful of the fact that he's going to be there and I'll have pictures and memories to look back, but it's just different. It's not stuff that I envisioned. I envisioned my dad giving a speech like he did at Britt's wedding. And I also find myself comparing myself to my siblings, and I feel like other siblings, if you're in here, can kind of relate to that. Um, it's not that it's like a I guess it's kind of like a jealousy thing, but I think it's just part of that grief. And then I feel like with what Brit said, she likes to talk it out and cry about it, where Anthony doesn't. I'm in the middle. Um, once I get going, it'll all come out and I'll cry. And it also doesn't hit me until days later almost. So I just spent when Karen was in DC, I was just with dad for a few days. And in the moment, I was fine. You know, you're on your grind, you're doing what you have to do to help him. And then it wasn't till a day or two later that I just broke down. And everything of just realizing realizing where he's at in the moment was hard to process. But the way that I've been coping with it is with my fiance. So, and I'm going on a tangent here, but he's a big part of how I grieve and I cope. So he lost his mom 10 years ago to cancer, and he is just the most uplifting, positive person. And he says to me, because I think I've asked him before, like how I'm reading this, like, how do you just get through life? Like, how do you go on knowing your mom's not here? You can't call her up. And he said, You don't get over it, you just learn to live with it. You learn to keep their memories alive. My dogs are about to park because he's coming home. So I'm gonna finish this. He's really kept me grounded throughout all of this. That's I'm going on a tangent, but my dogs are about to bark, so I'm muting myself.

unknown 19:01

Okay.

SPEAKER_04 19:04

Thank you, guys.

SPEAKER_03 19:05

Did you want me to go? Go ahead. Yeah, Brittany, how you know the one of the questions that I think is really important is what made you go to social media and how does that impact your grieving? Because I know the internet can be a really harsh place. So how does that help or hurt you?

SPEAKER_06 19:22

Yeah. So prior to dad's diagnosis, personally, my husband and I were going through infertility and I turned to TikTok and Instagram. Um, of course, you can go to the internet, but I just feel like through TikTok and Instagram, I was finding personal stories. And I am the type of person that I want to know the end result. So, like if I'm watching The Bachelor or Bachelorette, I'm already Googling who won because I need to know through the season. So when it came to us having to go through IVF, I like learned all the steps even before I started the process. And it was the same thing when we got dad's diagnosis. So when we received it September 7th, 2023, I immediately went to TikTok and uh Instagram and I tried every hashtag you could possibly imagine. And I found just about nothing. I found things about dementia, I found things about Alzheimer's, but nothing about younger onset. And I kept searching and searching and searching, and there were a couple stories here and there, but there were no real life experiences, and I I didn't know what to expect. I didn't know if this meant, okay, I only have six months with my dad, or I didn't know all the things, you know, you think it's just memory loss. That's like the easy part of it. There's so much more to this disease than just memory loss. Fast forward to November after the diagnosis, we were actually at my brother's rehearsal dinner for his wedding, and we were all together, and I said, guys, I have a really crazy idea, and you can you can tell me no. And at this time, dad was still pretty with it. He was able to engage in conversation, like he was still aware of everything. And I said, I've been trying to do a lot of research and look and find people to connect with, and I can't find anything. How would you feel if we started sharing our journey? And I was like, We'll call it Tony's TikTok. Um, and at the time, like, I think Karen was a little reserved and was like, What's this gonna look like? Dad thought he was gonna be famous and was all for it. I was so excited. He was like, Yeah, like just like we go live every day, every moment. Let's talk to the people. So we were all like thought about it and we were like, what do we have to lose? Right? Like, there's there's nothing that we have to lose if this can help even one person. Our intentions were to just make connections, to just share our story, to get information for families who um parents or uncles or aunts were further along. Like, what are we to expect? Because you can read things on the internet, right? But you can't connect with it until you're seeing it live and what really happens. So that's really how we started the journey. And then of course, Sherry, like you said, there can be a lot of negative comments. And of course, it's from the people who have no idea what living this life is. But I think at the end of the day, we just remind each other that we are sharing to help people and we know our boundaries. We know what dad would be comfortable with and we know what he would not be comfortable with. And if you do follow us on Anthony versus Alzheimer's, is which is, and we're also on TikTok, Tony's TikTok, we post more on the Instagram though. We are not posting as much because this is a new territory now as he progresses and we still want to keep that dignity and you know make sure that if he were still understanding what was going on, he would still be okay with what we were posting. Um before we all hopped on. And I actually still have guilt. It was a couple months back. Dad did come out in his underwear, black sneakers, and we happened to snag a picture of it. And at first, like he was fine with us posting it, but then I think and this was like months ago when he was still able to articulate. He was like a little bit upset about it, and I took it down right away. So there, of course, we made mistakes along the way, and we will continue to do so. But at the end of the day, everything that we post is for connection, communication, and to help each other through something that is so terrible. But you just try to make the best of it.

SPEAKER_04 23:28

Yeah. You guys have done a great job. Love you both. Thank you so much.

SPEAKER_03 23:35

And for anybody who's new that doesn't know, um, surviving the now really kind of came out of this internet, you know, uh social media piece because Beck and I knew each other. Karen and Eileen knew each other, and then Becca found Karen through social media and reached out, and then the four of us started getting together. So really, you guys were the foundation of how this started.

SPEAKER_06 23:58

Which was the whole reason. Yeah, like this is the whole reason we wanted to do it. And just another quick example. I'm a teacher and I actually had a parent who I'm close with. Um, her mom has dementia or Alzheimer's of some sort, but she sent me a really nice email and was like, we follow you guys on social media. My 11-year-old is really having a hard time understanding what this is about, but she watches your videos and it helps her understand that she's not the only one going through this. So it's little things like that that make all of it worth it. And that's really the main reason why we wanted to do what we did.

SPEAKER_03 24:32

Absolutely.

SPEAKER_07 24:33

And to go off of that really quick, if you do start the social media stuff, it wasn't always nice to read the comments. Like I remember the feisty Italian side of Brit and I would really go back at these people leaving negative comments. And then at some point we were like, all right, it's not worth it. Like either block them because the positivity of the whole platform definitely outweighed the negative that people saw in one minute snippet and had no idea what they were talking about.

SPEAKER_04 25:06

And 99% of the people are beautiful and leave great messages. And the 1% I always say, Yeah, you're right, I'm loud. Thank you for letting me know and sharing our journey. So you just have to digest it and make the best of it. But anyway, it's it's been a very good experience for us. And like Sherry said, it led us to all of you. And that is that it was the mission.

SPEAKER_03 25:31

So next we have Miss Becca, and she's got um a special video or a little audio message for us.

SPEAKER_05 25:40

Yeah, so um my kids are both working um this evening, and um my daughter was uh 21 and a senior in college when her diagnosed, and she's 24 now, and um she sent me this uh message today, which I'm it's an audio message, which I'm gonna play.

SPEAKER_02 26:00

Finding out about my dad's diagnosis was pretty obviously devastating. The kind of feeling like finding out magic isn't really magic and the histogramia is really your mom. It's like a period of naivety is cut short. Everybody knows that the only thing promised is life and death and nothing more, but when it's not in front of your face, especially with your loved ones, you can kind of forget the impending finality. To be 21 and told that your dad is here, he's okay, but he's not at the same time. And eventually he'll be there but not okay is such a huge feeling. It's all encompassing, it flicks everything while not immediately changing anything. Because not only is your loved one sick, but now the money's tight, mom is stressed, maybe it's cycle because that could be me in 30 years. Which seems like such a long time in theory. I know the feelings will never be, they will progress and change. And most times you're fine. Everyone around you is fine, but then little things remind you. There's the third day in a row. I'm late and can't find my keys, and maybe it's my ADHD, but maybe it's back on the brain. There's no advice specific to this kind of thing. For me at least, it's all the same as I should be doing in the first place. But as young folks usually need more take good care of your body. What goes into it is what you get out of it physically and care wise, take advantage of the time you have with everyone, because you're now reminded that life is so so unexpected. And taking vision, you never know what's next for certain. But a good life comes from you, not at you. Everything is an opportunity for change and growth and love, not in a maximized efficiency, capitalist way, but in a holistic approach where everything you do matters. And even though all of the options you get from incredibly processed food to Red Bull and dental care tools that are filled with just sugar, you have to make the good choices. Not everyone's gonna be good, but you gotta get the majority out there. Anyway, love you, mom, and I hope you like this.

SPEAKER_05 28:08

Um, so that's my wonderful daughter. Um, she lives in Brooklyn, uh, New York right now. Um, and then my son um was just 19 in a sophomore in college when his dad was diagnosed, and he's 22 now and um still trying to get through the college journey amidst everything else. And um with him, like also he's not a big communicator, but I asked him to like pick three words and maybe come up with something um that would share how he was feeling. And his words were forgiving, eye-opening, and sadness. And he said, I have to be forgiving while communicating with him, as he does not always remember or he repeats things and forgiving with others who don't understand what's going on in the predicament we're in. It's eye-opening because it can happen to anyone at any time, and it has made me realize not to take anything or anyone for granted. And I'm sad, sad that this is happening to us and that it is something we have to deal with every single day. I'm very supported by everyone around me, my friends and family make it easier to deal with as they will always listen and can understand where I'm coming from. And that's just a perspective from two teenagers to 20-year-olds.

SPEAKER_03 29:31

Thank you, Becca. Thank you. All right, so finally we have my son Aiden. Um, Aiden is uh 25 now, he'll be 26 in July. Um, so I won't say he's 26 yet. Um, Aiden lives on the West Coast, so he was able to get his work schedule squared away so that he could come meet with us. Um, so Aiden, if you can unmute yourself. I asked him two questions. So welcome. Um, the first one, for those of you that don't know our story, um Aiden, Aiden, when he was a junior in high school, came home from school one day from his AP psych class with a pamphlet and said to me, Mom, I think dad has Alzheimer's. I learned about it in school. And Chris was like 47, 48 at the time. And I did what I hate to say out loud, which was I was like, no, that's ridiculous. And I ignored Aiden and just kind of sent him on his merry way. And of course, we now kind of jokingly say that Aiden is a genius and that it's, you know, he was just about 17, I think, at the time. You were, I think you were 16, turning 17, that he was a genius. Yeah, that he was a genius and he knew Chris had Alzheimer's before us. So the question I had really asked him is like, because we really haven't talked about this, is like, how did you know your dad had Alzheimer's? Like, what made you come home that day?

SPEAKER_00 30:52

Uh well, first of all, I just want to say I'm not nearly as well spoken, I don't think, as Britney and Marissa. So I'm gonna do my best. Uh I'm in the army, uh, I'm an Army Ranger, and my vocabulary tends to have swear words and like every other word, so I'm gonna try and not do that for this meeting. So just putting that out there.

SPEAKER_04 31:12

Uh thank you for your service. Thank you.

SPEAKER_00 31:16

Thank you. Um next of all, I take a lot of pride in being the one that first diagnosed my dad with Alzheimer's. I think that's pretty cool to be the one that uh noticed it, and actually I took that leap when my dad was only like 48 or something. Honestly, the way I noticed it or the way I looked at it was growing up, I was an only child, and me and my dad were super close, and we did everything together, we had all the same interests, and I pretty much just absorbed his personality, I think. And um so when I was in high school and I noticed us having the same conversations twice a day or three times a day, and it something seemed weird. It was not like him to do that. Like if I told him something, he was gonna remember it because he took interest in my life and he cared. And I never knew there was no doubt that he would remember these things that I was telling him. So when he stopped remembering some of these conversations or these moments, I knew something was up. I mean I'm not what I'm telling you right now is not like groundbreaking. There's plenty of people a lot smarter than me that can tell you the symptoms of early onset Alzheimer's, but that was just my experience.

SPEAKER_03 32:29

Yeah. And so, you know, obviously you live on the West Coast, we're on the East Coast, and so you know, you've been gone for a little over four years now after college. So how do you deal with being so far away from us? We only really see you twice a year, you know. So how does how does that work for you and how do you find support?

SPEAKER_00 32:48

Well, I give most of my support from you, so I appreciate that. And I hope I can offer you the same outlet. This is a tough question because I feel a little guilty because it's it honestly, it's easier being so far away. Being on the west coast and only being able to come home twice a year, maybe for leave if I'm lucky. So I'll see my dad for a combined 14 days maybe throughout the year. Nowadays, with his condition, I can't really call him or text him and see how he's doing or talk about the Mets or something. Like I can't do that anymore, so I just don't interact with my dad anymore unless I'm home, which sucks. Uh but on it like day to day, the honest truth is it makes it easier for me. Um not having to live that every single day. And I wish I was there to help you do it because that sucks. It's a lot of weight on your shoulders. So honestly, that's the biggest like the toughest part for me is I feel like you're kind of bearing more weight than you should. Um I feel uh a little guilty, honestly.

SPEAKER_03 33:51

Well, you don't have to, because as you see and you see all the people here, like this is the community that provides support. So thank you.

SPEAKER_04 34:02

Aiden, I would be more concerned with you rooting for the Mets, to be honest.

SPEAKER_00 34:07

It's brutal. I'm concerned with myself.

SPEAKER_05 34:11

Um, Aiden, Aiden, your dad would want you to be doing exactly what you're doing right now, and he wouldn't want to stop your life. And that's what we want for all of our children is to continue to grow amidst all of the grief.

SPEAKER_00 34:28

I'm actually so glad you said that because one thing I wanted to say was like I try to honor my dad through my life, yes, um, and being away from him. This is the best thing I can do, I think, is like he would be so happy to see what I'm doing now. And yeah, in the future, when he's he's gone, like just continue to honor him in his life.

SPEAKER_03 34:47

Yeah, absolutely. And and you know, Chris got to see Aiden um become a ranger, so that was our last real trip that we did, and so it was a beautiful thing. Um, so thank you, Aiden, for being here. I know that this is not all of you guys, every one of you that showed up, thank you. It's not easy for what you're going through. And, you know, we just appreciate, we know that this will resonate with our community and beyond. And, you know, everyone's kind of in the same age group for the adults. So we know that even if we haven't taken a poll on how many people have kids, we figured it was probably the majority. So we hope this has resonated with you tonight. And so, as we usually do, if we had any questions, we were gonna take some questions. Um, also, if you guys, if there's any of you that, you know, any Britney, Marissa, Aiden, if there was anything else that we didn't cover that you felt like you wanted to add, please feel free to do so now. We love that you guys are here and we're gonna kind of take advantage of the fact that we have you with us.

SPEAKER_04 35:43

Uh Laura says thank you for having the adult children on and hearing their perspectives. And I will tell you, and Britney and Marissa know, it's really easy to get caught up with our own grief. It's really difficult when you're in this 24-7 to forget about how everybody else is feeling. And so this is a reminder that everyone is trying to cope in different ways. Obviously, it looks differently. Glenn said, Thank you for your service, Aiden. Cassie said mine are 12, and I have found being completely honest is helping, but I worry about what's too much information.

SPEAKER_01 36:21

I would say that I asked the boys, because I was very honest with them, I and shared that it was going to be a hard, hard journey. But I would do everything in my power to protect them, to make sure they had as normal a life as possible. They had great support systems in terms of their friends and their coaches and their teammates, and but I asked them just the other day, what did I, because I was completely transparent, I didn't hide anything from them, I didn't shelter them because they were living the day-to-day with me. And I even went as far as saying, at some point there may come a time that daddy may be aggressive. And we have talked about that. Steve and I talked about that as he was diagnosed, and we said that we would put him in a memory care facility if he got to that point. And I think that they were always on edge, but I I didn't want that, and I asked them if that if that made them worried, and they said it made us worry, but they always said to me, We were okay because you were okay. And I've I mean, I think it was my ICU mentality of just going. And I think Marissa said that when she was with her dad the last two days, you just are in robot mode. You go, go, go. Um, and they would help us, they would help Steve put his shoes on, they would take him for a walk. And and I think I'm hopeful that it's gonna make them kinder, more compassionate and pay it forward. And I always say to them, because one day they're gonna have a platform to share their story and always share what their they went through to help someone else. And so I think it's a fair, it's a fine line. You all know your children, but holding things back and not showing the real can also be detrimental. And so you just gotta take it a day at a time.

SPEAKER_03 38:13

Yeah, and I think that's really important because just from talking about, you know, like Aiden being far away, I from a different perspective of like what to say, I try to be as honest as possible about what's going on in the house, you know, when I talk to him without being like over dramatic and like trying to scare him and make it feel. And sometimes, you know, like he'll come home and I will say to him, like, it is my perspective, like, am I on track? And sometimes he'll be like, no, it's not, it doesn't seem as bad as it is, or oh, it's worse, or it's whatever the, you know, like he's been really good about kind of being a sounding board for me, you know, when he's able to see what's going on. So I think that's helpful. So those honest conversations are really important because particularly if your kids don't live in the house with you, I would never want Aiden to come home and be like, oh my God, things are so bad, why didn't you tell me and be shocked? Like I would rather maybe be a little erring on the side of it's dramatic than him come home and suddenly be so shocked that the grief is so overwhelming. You know, I think that that's probably not the best way that I want to go about things.

SPEAKER_04 39:18

So yeah, and and just to add, I think that the one area as parents or stepparents or grandparents that we all have to remember because it's hard since we're on this journey, is that our kids are watching us handle this.

SPEAKER_05 39:35

Yeah.

SPEAKER_04 39:36

And that's really important. You know, they can watch me cry and sulk and be sad and really not focused on what we need to do to stick together as a family and to be strong. And by the way, you're going to have weak moments, but the best thing that my son ever said to me was that he is in awe of watching me take care of my husband. And he's learning lessons, life lessons that he never understood because we were never exposed to this.

SPEAKER_05 40:09

Yeah.

SPEAKER_04 40:10

So I hope that that carries him through his life. Um, I hope the girls, you know, they'll be stronger for it. Obviously, you can hear how strong they are, but that's really important. Like we are setting examples for our family, our friends, and our children.

SPEAKER_05 40:26

I will say, I will add to that that um having your kids see you and watch you in in the good moments and the tough moments is like you said, Karen, it's going to help them grow. Um, it's real life. On a note on that, is that my son always tells me happy birthday, or not in any demonstrative way, but this year he actually went to the store and bought a card and it was a picture of superwoman on the front. And his note inside made me cry, and it's up on my refrigerator because like he sees how strong I am even when even when you don't feel like it.

SPEAKER_03 41:09

And I think that's really important because again, I think it is we're going through it. Everyone who's here is going through it, right? And there's so many things in your life you have to balance, not only taking care of your spouse, your whoever you're taking care of, but you do have kids that you have to take care of as well in different ways, and you're all grieving, and you're all grieving in different ways, and what that looks like, and not everybody has the same emotional capacity to do things, so you know, there's no right or wrong way to do it, and that's I think a really important thing. There's no way to grieve that's the right way, and so you know, whatever it looks like is what it looks like in the moment. I mean, Chris has had the stomach bug for a week and it's been kind of nightmarish at my house. And you know, like I I call Aiden and he makes me laugh, and so we have fun conversations, and you know, that's been incredibly helpful because I've had to work from home and haven't left my house to see friends. So I needed somebody to be on the phone to, you know, uplift my spirits. And I think that's who's in your community, in your family, outside your family is really important when you're going through all this, but your kids need that as well, and they need some normalcy in the midst of all this kind of chaos that we're living with.

SPEAKER_04 42:19

I found the text, if I can read it quickly, it's just very short. And it says, This is from my my middle son. I'm learning so much from you through this, mom. I know you don't realize the impact you're having, but it's bigger than you'll ever imagine. I'm grateful for all of our conversations, even the hard ones. It's not as far away as you think to be happy. In the meantime, watching you care for your husband the way that you are will stick with us forever. A true example of what love is that many kids with divorced parents never get to see. Maybe we needed this lesson, and unfortunately, it's coming in the hardest way possible. Yeah, that's so it is, it is, and we understand that all of our kids have those feelings, and it's really good to talk it out. Not always, they want us as parents. My my kids do not want to hear all of my stories every day, and I try not to always give the girls and their brother the the bad stories. I I really try not to, even though it consumes my life. But that is a true example of how we can impact our kids. And Gina has a uh question in the chat: what about sibling help? Parent opinions. Uh sibling help, Gina, do you mean therapy? Uh are children going to seek therapy? Um, how are they getting help?

SPEAKER_03 43:45

And I think I can just start to speak to that a little bit. I think, you know, listen, if you have a grief therapist or even sometimes you can reach out to hospice, even if you're ahead of time. Um, hospice does grief counseling in there. They may have, depending on where you live, sometimes they have. Programs for like anticipatory grief where parents are terminally ill. If you can find groups for kids, I know in my office um where I work, one of the social workers there is a grief counselor, she's amazing, and she does kids' grief groups throughout the year. There's also things um you can look in your area. So, like up by me, there's an actual grief camp for kids whose parents are terminally ill. That's it. It's called Double H Ranch. It's kind of up north by Lake George, and they do a full weekend for kids who are grieving, and it's it's pretty amazing. You know, I have to think that those things are across the country in different places. You just kind of have to look for them. I think it's really helpful to offer that to your kids. Not every kid's gonna want to go. Some might just say no, and that's okay. You can always come back around and just say, you know, do you need help? Do you have support? Or find out who's in their life that supports them. I think that's really important too. Do they have friends that they can talk to? Because just because they might have a lot of friends doesn't mean they have friends that they can actually talk about something really deep and important like this.

SPEAKER_04 45:00

I I this is a question from Gina, and maybe uh Aiden, Marissa, or Britney can answer. How do you handle questions from your cousins or from family members or people you haven't seen in a while? How do you handle those questions?

SPEAKER_06 45:14

I'm pretty just straightforward. I mean, I do like to talk about it. I, you know, it it's it's hard when people say, like, how are your dad how is your dad? And I actually saw a post about this a little while ago. Like, how is your dad? Well, honestly, he's not great, but I'm still happy you asked me because it lets me know that you're still thinking of me. And I understand it's hard on the other side to like still check in, but you see he's progressing and you know he's not great, but you still want to be there. But I think our approach, and I think ours is a little different because we do share so much on social media that you can kind of see, you know, the ebbs and flows of how dad is really doing. But I'm personally pretty transparent in sharing like where he is in his journey, and I think for me it it helps people understand like why some days might be a little more tough for me, or um you know, it just gives them a little more insight to why I'm acting a certain way. So that's really my approach to handling questions and and that's a good question.

SPEAKER_04 46:17

Like, what do we tell people when they say, Well, how is your husband or your wife doing? Do you tell them the truth? Right, like not good.

SPEAKER_07 46:27

I do. I say he's progressing, yeah. He's further along than he was yesterday, right?

SPEAKER_06 46:34

But and then you say, But he's happy, yeah, right? Like he's always smiling and he's happy, and that's really just where we stand.

SPEAKER_03 46:43

That that's how I answer it when people ask me all the time, they're like, How's your husband? I'm like, not awesome, but he's happy. So, like, you know, I'm really grateful that like Chris's mood is really good, like for the most part. I mean, afternoons now he's quiet, but like for in general, like he's his mood is pretty stable, and so I'm you know, I always tell people, yeah, it's not great, it's not awesome, but guess what? Like, his mood is okay, and so for now, that's the answer I give, and it's it's a good answer, I think. And then some people want a follow-up, most people don't. Most people are just like, okay, you know, and they move on, and that's okay too. Like, I think, like you said, Brittany, is that you know, they're still asking it, they you know, people just don't know what to say to you, so they they start with just something simple like that, you know, that they're reaching out.

SPEAKER_06 47:30

Yeah, it's not like the grief of like the passing of someone, right? Like you only understand it if you're in it. So, you know, everyone's probably experienced the passing of some sort of relative, and you can relate to that, but if you're not in this journey, you really have no idea.

SPEAKER_04 47:45

Yeah. Actually, Glenn Glenn says, I always told the truth, but wraps something positive in the message. And Susan um says, same. I said he's progressing, but I find joy every day. And uh Ron says, I love the really happy uh you asked. Yeah, it it's it it definitely is. You try to be honest, but then put a little bit of a positive spin on it because you can never really explain, you know, and people do say silly things because they don't understand. If one more person used to say, Well, he seems fine to me. I was just gonna say that's what I wanted to give him one of these, right?

SPEAKER_03 48:28

We always laugh, we're like, we're gonna throat punch them. We're like, come on, exactly.

SPEAKER_04 48:32

Well, he seems fine.

SPEAKER_03 48:34

Yeah, really seems fine. Yeah, come on over, hang out for a while.

SPEAKER_04 48:38

No, they don't know what to say. Um, Michelle says that drives me crazy. Karen says I have a lot of people say I have memory issues too.

SPEAKER_01 48:47

Like you smile and nod. That's when I smile and nod. Or I would invite them to come spend a day with us if they so choose.

SPEAKER_04 48:55

Yeah. Yeah. Yes, yes.

SPEAKER_03 48:58

I I always feel bad for the unfortunate one person who catches me on a day when I'm off, and then it's like verbal, like just here's what's happening. And then people look horrified. And I'm like, I'm so sorry. Like I it it happens every once in a while, and I always I always later on I'll be like, I am so sorry that just happened to you. But you know, it's real life. Like occasionally they're gonna, you know, you're gonna not be in the best place when somebody asks you a question, and that's okay too. And you know what? I think what we've always said throughout all our podcasts is like, give yourself grace because you are not gonna do everything perfect. You're gonna have days where you're gonna say something to somebody. I mean, I snapped at a friend last year on my birthday because Chris didn't know it was my birthday, and Aiden was amazing and sent me a card and made sure I celebrated it, but you know, Chris didn't know, and my friend said something to me, and I was like, It's my birthday, and like, you know, like I lost my mind, and she was kind of like, Oh my god, what just happened? You know, and I had to go back and apologize, and that's okay, you know, and she understood that like you know, it was it was an important day, and you know, he didn't know, and that's what the issue was, you know.

SPEAKER_04 50:05

Right. Um, Michelle says, try to be honest, but all but not always be Debbie Downer. We agree. Yeah, yeah. Well, it's seven, it's 7 56. I'm doing a time check. Great for all of us. Uh, do we want to tell everybody what's coming up? Yeah, and then we'll we'll finish up.

SPEAKER_03 50:22

Yeah. So this is gonna be our last podcast for the spring. Um, we are not gonna be doing over the summer, but we are going to have things here and there over the summer, so you can check the website, um, check social media. We'll keep you guys updated. Um, the small groups we talked about, we're gonna still be doing. So, any of you who are in small groups, if you haven't gotten in touch with us yet to be in a small group, if that's something you're interested in, please email us. Go through the website. Um, we check, you know, go through social media, we check all of those, um, and we will get you connected with a small group. And then we're, you know, we're kind of gonna cook up some new things for the fall. And so we'll announce that when we get there.

SPEAKER_05 51:02

And thanks to all the kids that came on today and sharing your message. It really um put a nice end to uh this season of our podcast of just sharing the whole family picture. And I think you guys did a great job. So thank you.

SPEAKER_04 51:16

Yeah, yes, and stay connected to your small groups. I think PA New Jersey is actually going to try to get together in person because we're so close and uh stay in touch. We love you all. Keep messaging, keep getting support from each other.

SPEAKER_07 51:31

Can I really quick? I just wanted to say if there's anybody who feels like that they're kids to reach out to Britt or I, um, we kind of talked before you can stay on, and we'd be happy to give you our number or email um just for extra support.

SPEAKER_01 51:46

And I would say from a teenage perspective, um, if someone wanted to reach out and have Jake or Cole talk with them, I'm sure they would be happy to do so.

SPEAKER_04 51:55

That's great. That's a great idea. Yeah.

SPEAKER_01 51:57

Thank you all.

SPEAKER_03 51:58

Have a wonderful summer. Stay connected, and we'll see you on a lot of people.