EP#6 - How We Live With Joy and Grief Simultaneously

On this episode Cherie, Becca, Eileen, and Karen change the format for a candid discussion on welcome back the community and focus on personal joy and grief tied to their lives as caregivers for spouses with Younger Onset Alzheimer's, and discuss the varied faces of it with advice, tips, and affirmations.

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_04 0:33

All right, welcome everyone. Tonight we have a little different format, and Karen unfortunately couldn't be with us tonight, so tonight you'll have the three of us and we'll go through some introductions in a minute. But basically, we decided to title this one tonight called How We Live with Joy and Grief Simultaneously. It's something the four of us have been talking a lot about over the last few weeks. And as we've started doing some of these small groups, we've also been talking about it within these small groups. So we thought this was a perfect time as we're going into spring. And those of us in the northeast are in higher elevations where we had rough winters, we're starting to come out of hibernation. We thought this was a really great time to do this topic. I want to introduce ourselves quick first. And what I will say is we're going to do really short introductions. For those of you that have been with us before, welcome back. We're happy that you're joining us again. For any of you who are new, um, please go back. You can go to our website, survivingthenow.com, or you can find us on our podcast on Spotify or Apple. You can go listen to, and that kind of gives our stories of who we are if you don't, if you are just meeting us for the first time. So I'm Sherry Davies. I live up in upstate New York. Um my husband, Chris, is has younger on set Alzheimer's. He was diagnosed in 2019 at the age of 51, and he's currently now 58. Pass it on to Becca.

SPEAKER_02 1:54

Um hi, my name's Becca O'Neill. I'm in Newport, Rhode Island, and um my husband Charlie uh just turned 54. He was diagnosed at 52, two and a half years ago. He is, you know, stage three, four. And Eileen.

SPEAKER_03 2:10

Hi everyone, Eileen Ware. I live in Woodstown, New Jersey, with this, which is South Jersey. Um my husband Steve was diagnosed at the age of 53 in 2021 and sadly lost his battle with early onset Alzheimer's in Louis' body in January of 2025. So I'm about a year, almost a year and a half since his passing.

SPEAKER_04 2:32

So tonight we really wanted to talk about something that, you know, I know I heard in one of the groups that I was in that I went to where somebody kind of said, like, you guys look like you're doing so well. And we wanted to really talk about the whole picture of it because we come on and we talk to you guys and we have agendas and we know what we're gonna do, and we've kind of met ahead of time and we've had these talks about how we're gonna do it. And yes, you'll see us get emotional during times, but you know, you're only seeing part of the picture. And so we've really been kind of conscious about talking about what are all sides of the things that we go through when it comes to younger onset Alzheimer's and caregiving, because this is a really difficult journey. And we're finding that as we're doing these groups with you guys and kind of helping you branch off into your own pockets of people that you have your own support, that you know, we're hearing the same thing is that it's really difficult. And so we really wanted to talk about that tonight. And so we're gonna kind of go heavy and then we're gonna go light. And so we kind of wanted to break it up so that it's not through the whole thing just a heavy topic. Um, one of the things I wanted to really kind of stress with all of you is that, you know, we know that what we talk about is really difficult and challenging. And so when you listen to our podcast or you're joining groups or you're doing any of these things that really bring it to the head and you're really kind of in it in the moment where you're feeling all these emotions, please make sure that afterwards you're taking care of yourself, whatever that looks like for you. Whether, you know, when you're done, you need to get a cup of tea, you need to take a five-minute break, whatever it is. Just be really mindful when you're done listening to these, that you do take care of yourself afterwards. I think that's really important to remind you because we don't really talk enough about that. So as we move into this today, we kind of named our categories as we go through these. We were kind of talking about what we wanted to do tonight. And our first one is really focusing on kind of the sadness around this. And we really decided that what we're hearing a lot of people want to talk about is really the process of moving from spouse to caregiver and what that looks like. So we're gonna start with Becca.

SPEAKER_02 4:33

Hi, yes. Moving from spouse to caregiver, which is a big topic probably for many of you. All of us are going to go through this at some point, and um, it's actually a big topic in my household with my husband, and it's almost as if I never even noticed it happening, you know, because before someone is diagnosed, you're trying to figure out what's wrong and you're not really sure, and they're acting differently, and you haven't really put a name to it. So there's already this distance and confusion that's been developing in your relationship, and then you get a diagnosis, and then you are absolutely devastated um when someone says that your spouse has a terminal illness. And um, I just want to make a quick point that I'm giving this from the point of a caregiver, which um I think we all are on here. It's so challenging, it's so hard. There are miscommunications. In our instance, we also had to move right away. As a lot of us are, we're all working full time while managing all of this, and it's hard to get through the day. And it's very challenging for my husband because he wants to be seen as who he is and not that, and not the disability. And I think that takes a lot of time to do a switch in your brain. And if Sherry or Eileen can help me out here, though those early days, because you you Eileen, your husband is past, and Sherry, your husband is further along down the line, but those early days, I am being told by my friends here, like they're often the most emotionally challenging.

SPEAKER_03 6:20

Right. And I'll just said that I think it's hard because you're trying to process it as a wife or a husband while your spouse is trying to process that I have a terminal illness, throw in children or your family dynamics, and I think both of you are are dealing with certain dynamics that it's hard to support each other, right? And and trying to figure out what the next step is. So I think it's okay to give yourself grace and and feel, but quickly the dynamic shifts, and you're no longer their spouse. You're this full-time caregiver to someone who is declining cognitively and frustrated. And I I just think it's so hard for the caregiver because they're feeling the burden of everyone and everything at the same time, while likely still working full-time, still caring for kids, and taking on all the responsibilities of the household. So it's a lot, and I probably didn't give enough guidance on how to navigate it, other than it's okay, however, you feel when you're navigating it. Sherry or Karen?

SPEAKER_01 7:41

Yeah, Karen, welcome. Karen was able to join us. Thank you. Sorry everyone, I was a little late. Uh I I don't know if anybody else felt this way, but I think there was a line drawn between husband, uh, we were romantic, we were intimate, and then all of a sudden now he's my patient and I'm his nurse or I'm his caregiver. And once I crossed that line, I felt very uncomfortable going back. It was very hard to see him in both places at one time. I felt so sad because he used to say, Why don't you love me? Why why don't you want to be with me? Well, that wasn't it. I just didn't think it was appropriate anymore because he wasn't cognitively available to me and he didn't know what was happening. So again, I know that probably is too much information, but for anybody else out there that feels that, it was so normal. And even today, he still says to me, Well, why why? I don't I'm thinking, Are you kidding? That is not something that I'm gonna do, uh especially because we regress. So how could you how could you cross that line anyway?

SPEAKER_04 8:59

And I Karen, I think you're absolutely right. And I know for me, I felt such a profound sadness when that intimacy ended because that connection, right? You don't have it anymore. And I literally remember thinking to myself, like, I don't have a marriage anymore, even though you do, right? You're still married, but it doesn't feel like it anymore. And I remember struggling with that for a very long time about how that because again, same thing, right? You were still in that, like, why isn't this happening? And the sadness that went around that was something that I think was probably one of the most difficult times in those early stages, like Becca's in. Whereas like that was one of the hardest things to kind of navigate is that you realize, like, yeah, you don't have this marriage anymore. You have a person living in your house, and and it's really difficult, like emotionally, to see that person that you used to love so much as a partner now isn't that anymore. And so, you know, and it's another last.

SPEAKER_01 9:55

It's another, yeah. As we all go through this, we're like, okay, well, he can't drive anymore. Well, okay, we're probably not gonna kiss anymore. Well, okay, we're probably not gonna be into like everything is the last time. And so to think of yourself never being intimate with your husband again or never having that connection. And if you're if you're have if you're on here and you have a parent, it could be a little bit of the same thing in terms of you know, affection or having them take care of you. Like those days are over.

SPEAKER_04 10:30

Yeah. And it's it's really hard to navigate. I mean, I know I think at that time, I probably instead of going to therapy every other week, I was probably there every week, and we talked about the same thing for weeks and weeks, and you know, I had a lovely therapist who just was like, Yep, this is this sucks, right? And there's like no way around it, like there's no way to make it better. It it is what it is, but it's it's a really hard place to be in.

SPEAKER_01 10:54

It's interesting. Chris uh Lekovic, I hope I'm saying that right, said something, someone described it as sympathy sex. And that is so on point. Yeah. So anyway. And it's right, it just doesn't feel right.

SPEAKER_03 11:09

And it could be traumatic for the caregiver too, right? Doing that and you think about it, and like Karen said, you're you're dealing with a toddler or a kindergartner. Yeah.

SPEAKER_02 11:20

And I would I would like to say an additional layer of that is the the emotional exhaustion you feel because of the sadness, and you can't show it because you don't want your spouse to feel badly because they're not doing anything wrong, and it's just Alzheimer's, but you're holding everything in, and you can't share as equals like you did before because you don't want them to feel badly for something that is out of their control.

SPEAKER_04 11:54

Yeah. As we move through sadness, on the other side of that is always joy and happiness. And so, Karen, you are with us. Karen, do you wanna share something with us? Something that's something. That's the perfect one. Oh, ladies, everyone, if there's any gentlemen, sorry, but this is a moment of joy that we are all gonna celebrate with you.

SPEAKER_01 12:15

Well, so first I'll say in terms of joy, I think all of us deserve to have some moments of joy, whatever that may look like. Like everyone always says self-care to me. Oh, okay, I have time for that, right? No, I'm working full-time, I'm taking care of my husband, but this brings me joy. Seeing all your faces bring me joy. Yep. Having uh the three uh other wonderful ladies who started this with me brings me joy. And I just found out from Maria Shriver, who runs the all women's Alzheimer's Movement, that I have been selected as the recipient of the Caregiver Award for the Women's Alzheimer's Movement. So I will be heading to Cleveland to get that award. And um very, very honored. Uh Emma Willis, who is also dealing with this, Bruce Willis's wife, was the recipient last year. So I'm not sure why they chose me. I'm not a celebrity. I'm certainly not, you know, any anyone special, but this is going to be a voice for all of us. I promise you. We are taking this on the road to make sure that people understand what we're all going through. So I just wanted to share. We'll be sharing it and posting it. Anyway, I'm very humbled and honored. Yeah.

SPEAKER_04 13:45

So again, right, why we have moments of there's there's these emotions that we're having, but there's also joy in our lives, you know, just like Karen said, even just us finding each other, like such a joyful thing for all of us that we have each other. And that's why it's been really important for groups, and we'll talk more about that later. Next, we decided we were gonna talk about um frustration, and we kind of titled this one Things That People Say or Do. And Eileen, you want to start?

SPEAKER_03 14:12

Oh, sure. Um, so there have been so many moments throughout our journey with early onset where people, whether it be friends or family, make comments that are really dismissive or were really dismissive of Steve. Not understanding when I said he had younger onset. He's physically fit, he looks fine. What are you talking about? I just spent 30 minutes with him, and I'm like, and it would literally piss me off as my friends who uh know on our smaller groups, it I wanted to throw punch every one of them because it was so frustrating, and I would just go home and cry, and I would feel like no one listened to me or understood me. And um, then it was just a waste of my energy trying to explain to people. And so I figured out I would just say he has cognitive impairment, he's losing his memory, and it doesn't affect you physically until the very end. So I would meet people where they are, and if they would try to give me advice, I would politely walk away and not put Steve in that position to really make him feel bad, where people would say, You look fine. Are you sure you really have that disease? Um, and so I just became his protector for the most part and just try to then stop with the anger and frustration and help people see that it doesn't affect you physically, it affects everyone differently. And when someone asks you the same question 27 times in the same half hour, that it's real. It's kind of how I dealt with it at times, but very, very frustrating and hurtful.

SPEAKER_04 15:58

And I I think when we were talking about this too, for me, it's you know, I get very frustrated. And I think some of this is expectations, right? So my expectations were probably not in line with reality, which I discovered, where a lot of uh Chris's high Chris's best friend he's had since kindergarten. I think they were soulmates in a previous life, they've been together since they were five. You know, so his friends from early elementary and middle school, those are his old school friends. They've been with us through this whole journey and they're wonderful. Um, some of his past work friends, like a few of them show up and the rest of them have just kind of disappeared into the ether. And then they'll they'll show up randomly and they'll ask me questions like, well, why doesn't he have a phone anymore? And I'm like, he can't tie his shoes, he can't use the phone, he can't answer the phone. Like, I don't know how to explain that. Like, I'm not quite sure what you don't understand. And it's it's incredibly frustrating to try and manage other people. And and I think, you know, we've talked a lot about where we're trying to stop managing other people so much, but it's you know, when you're when you're in caregiving, right, all you do is manage somebody else. And so I think it becomes a habit. And I I find for me it's a struggle where I I am still in that phase of like, okay, well, this is why we're doing it and this is what we're doing things. And so Chris used to bike, and you know, I've had questions of like, can he bike this year? And I'm like, Did you watch him eat dinner? Like, he can't use a fork. Like, how can he get on a bicycle? Like, so I think people don't understand. They see, right? Like, like Eileen said, he looks great, he looks super physically fit, but when you get to what's really happening, I think there's also people who just you don't want to admit what's going on, you don't want to accept it yourself, but it becomes a it becomes a huge frustration when people are saying to you, like, can he go biking? Can he do these things? Or why can't he use a phone? And you're like, have you lost your mind? So trying to manage your own emotions around that frustration, I know for me is something I have to practice very actively because I get very frustrated and then it doesn't do anybody any good because the other people aren't frustrated. It's only me, Chris doesn't know what's going on. Right, like Eileen said, Chris doesn't know what's going on, he's not impacted by it. And so it does take a lot for me to just really try and calm myself and realize like they just don't know. I can't have these expectations that they're going to understand. I know now who's in my circle that does. And I think that's what makes more of a difference now.

SPEAKER_03 18:29

This falls into the table that we showed last month, right? Around why younger onset is so important to bring awareness to, because it's someone in the chat said, My 85-year-old grandmother doesn't look that bad, or it's but my 85-year-old grandmother has it. Why, how can someone 53 have Alzheimer's? So another reason why this group and bringing awareness is so important.

SPEAKER_01 18:57

I can't tell you how many people do that to us, right? And I always say, well, it's a little bit different when they're later in life and when they're 55 years old. So your spouse, yeah.

SPEAKER_04 19:09

And it's your right, it's your spouse. Yes. And your life changes, right? And again, this is I think why it's so important what we're doing and why we're talking about these things, because as as I've talked to more of you, and we've really done this, and I've seen, you know, I do the website, so I get a lot of your messages coming through. Our lives are very different than what it looked like. My grandmother had Alzheimer's, and it looks very different, right? Like they were, she was in her 70s, right? They were already retired, they were just hanging out. And not that it wasn't any more tragic. I mean, it was devastating for me. I loved my grandmother. She was my, you know, one of my favorite people. But my grandfather's experience is probably closer to what mine is, other than the fact that he didn't have young children at the time. So we're gonna move on from frustration to joy again to happiness. And so, you know, when I was thinking about what I was gonna say to you guys about this, is I it's it's gonna sound silly, but I think it it kind of illustrates how you can find joy in these small moments. So I did go to the dermatologist this week because I had these two weird spots and I didn't know what they were, and we have skin cancer in my family, so I started to get a little nervous about it and I was like, I probably shouldn't wait. So I go to the dermatologist, new dermatologist, she was lovely. She looks at them, they turned out to be two very weird-looking freckles, which I started laughing in the dermatologist's office. She probably thought I was crazy, and I just was like, oh my god, this is the best appointment I've ever been to. She was like, wow, this is great. Like, but I I took the moment because I was like, I felt some relief, right? That obviously nobody wants to have skin cancer, and I was worried. So, you know, but taking that moment to even just recognize I was like, oh my gosh, like I went to the doctors, I actually got myself an appointment, I took care of myself, I got somebody to stay with Chris while I went into this. The things that you have to do to get to that moment when she said to me, like, oh, it's just a it's just a weird freckle. You know, I just I took some great joy in knowing that like I put myself first, I did these things. And I think that's really important because a lot of times we talk about joy in the moments with our with our spouses and what that looks like, but I don't think we talk enough about like in those other moments for yourself what that looks like. So that's kind of my moment of joy. It was a, I say silly, but it wasn't silly, really. It was, you know, really kind of honoring that I don't want to have any kind of health issues down the road because as we've talked about, Becca, I think really highlights it. The statistics are that caregivers have way more health problems. And so we don't want to be statistics on that, right? We want to have healthy lives.

SPEAKER_02 21:43

This is talking about feelings since this is our feelings episode, like, and I don't know if it's on your list, Sherry, but the feelings of guilt trying to feel a moment of joy or taking time for yourself, the the feelings of guilt that you I experience like I never used to feel guilty for you know going to get a pedicure or spending time or going out with my friends or anything like that, but like the feeling of guilt that I have now because my spouse has a terminal illness, I am still trying to figure out the the line between we're we're not the same person. You know, my husband is one person and I am one person and we have created this life together that we have built together. I'm I'm still confused over feeling guilt and and and really navigating my emotions.

SPEAKER_04 22:41

So yeah, but you know, Becca, I think that's you know, again, for those of you guys that have met us already, uh I am in our journey much farther down the road than than Becca is. And I still feel that today. I mean, I have, you know, we have a caregiver coming in on Wednesdays now just so I can do errands in the morning. And I will tell you, I had like a gap of a half an hour this morning from the first errand to go pick up my groceries. And I sat in the Target parking lot because I was like, I can't make it to my house and I can't, but I felt terrible sitting in the parking lot. But I also knew like logistically, right? I couldn't make it to my house, get back, and do all the things I needed in a short period of time. But I still feel like that. I'm not, I wasn't even doing something fun. I was literally running errands that we needed for the house. And so I think it's really hard to navigate that throughout. There's always something different, right? Like I have less time to go out now because I need to have somebody at my house to watch Crest. So I have to be really mindful of like what am I doing? I feel guilt if I right, I had 30 minutes to sit and do nothing, and then I was like, oh, this doesn't feel good.

SPEAKER_01 23:47

Well, I don't feel any guilt. Sorry. That's okay. But that's okay. I'm done with the guilt. Good for you. I I am I have to look out for myself now. This has taken everything from us, or at least it's you know, my crying. Yeah, and we're so brave for saying that out loud. Well, but you know what? I hope you get to the same place, Becca. Yeah, and I know you're not there, but I didn't ask for him to get this, he didn't ask for this disease, and here we are. And we're all human doing the best we can. We're doing the best we can deserve to have a life too. Yep, yeah, and you know, we can only feel so so many emotions. So sometimes we're angry and then we're sad, and then we have grief, and then we have a little bit of joy. I mean, the fact that Sherry was joyful that she didn't have like can't like come on, right?

SPEAKER_04 24:39

That's sad, but but this it is sad, but you know what? In that moment, I was like, all right, reality, yeah, but this is what life is like now, right? Like this is the joyful moment, and I think that's what highlights it is. Karen, you're a hundred percent correct. Like in my life six years ago, I'd have left that office, I wouldn't have thought twice about it. I'd been like, great, whatever, blah, blah, blah, blah. Like to me now, like leaving that office, I was like skipping out of there. Like it was the, and that is such a a weird shift. And but I think that's the reality of it, right? Like, there's things now that make me happy that anybody may you guys probably all listening to this are like, yep, we get it. It makes sense. It's in the cherry. Right. My friends everyone agrees. Yeah, my friends would be like, What is wrong with you? Like, they you know what I mean? Like, don't quite get what that looks like. But that was a happy moment where and like I said, the dermatologist was probably like, Who's this crazy lady? Like, what is wrong with her? You know, but but Karen, I think it's important to talk about where if you have guilt or you don't, both are okay. Like it's or if you have it for one moment today and never again, like that's okay too. Like all these things are really important to discuss.

SPEAKER_01 25:53

Well, and Glenn says in the chat that his wife passed away two years ago, and he says the guilt never goes away. So my guess is when I have more time to think, when I when I'm sitting alone or doing maybe that's when it will hit me. And maybe, you know, that's what Glenn means, um, especially around the holidays, and I totally get that. But right now, I'm just not allowing that to happen. There's too many other emotions that we go through.

SPEAKER_02 26:22

It's survival, surviving the now. I mean, that's why we should renamed our podcast because we're all in different parts on this journey from pre-diagnosis to diagnosis to stage three, four, and like we're all trying to just get through that moment to the next day. And guess what? The next day is even worse than the day before. And you know, if your spouse has passed and Eileen's husband has passed, like I think that Karen, you're right. That, you know, and Eileen has expressed this in our in our private group chats. Eileen, you can speak to this, please.

SPEAKER_03 26:59

Yep, you're in the moment and you don't even have a chance to feel, you don't, you look back, at least for me when when Steve passed in 2025. I it took me about six months to even feel or process what happened. I went back to work three days after we had his services because I didn't want to feel anything. Then it started to process. But I Sherry, I'm gonna jump ahead and choose my happiness joy moment or please do because 2025 really marked a lot of firsts and experiences without Steve. You know, Jake graduated high school, Jake went to the college where Steve played football, Jake's playing football there. Like I couldn't tell you how angry I was. And from January to approaching the holidays, everyone would say to me, Oh, the holidays are gonna be so bad without them. How are you gonna get through it? And I made a conscious decision. Uh my boys who also lost their dad deserved happiness, and so in that moment, I chose joy and we could have embraced and slept through the holidays, but we made a conscious decision to spend the time with our families where we couldn't the five Christmases prior without everyone coming to our house and we could wallow, but instead we enjoyed the holidays. I always talk about Steve every chance I get in every facet with our family and friends, and I bring them up because I know people are uncomfortable, but it's my comfort in knowing that I gave him the best care possible, but the boys thriving and succeeding after all they lost as teenage boys bring me brings me joy and brings me happiness. And so I feel like joy is a decision, is a deliberate decision, or choosing to look at situations. Don't get me wrong, I'm mad, I punch things, I like to throw punch a lot, as you all know. But it is, it's really a conscious decision to say this could take me down and not make me get back up, or I'm gonna get back up. And this, I can't tell you how much is helping my healing journey, just being able to help all of you navigate this dark space.

SPEAKER_04 29:15

Yeah, thank you, Eileen. I mean, I think that's so important, right? Is like who what do we still have, right? Because most of us that are in this, we all have kids, right? Our kids are all now a little bit older, right? Out of high school, no, Jake's still in high school, right? Is that who's in high school? Cole. Cole's in high school. Okay. So, but other the other three of us all have older kids, they're not that old, right? So, like, I know I I'm driven by making sure Aiden is doing well and that like thinking about things down the road, and he's not he doesn't have a girlfriend or anything like that right now. But I think about days where, like, someday in the future, maybe I'll have grandkids, and wouldn't that be cool? And so some of those things I can kind of think about, even in the midst of all the grief I'm having right now, is that there is something on the other side and it's gonna be different. It'll never look like what I had originally thought it would look like, like us all together, me and my husband being grandparents together, those kinds of things. And I, as I'm saying that, it seems kind of crazy that I'm thinking about a grand being a grandparent, but those things right down the road, right, are gonna look different. And so they're gonna be tinged with with grief, but there's also joy on the other side of those things too. And that's yeah, somewhat I think I feel inspired a lot of times by Eileen, that knowing both sides can coexist and seeing it happen.

SPEAKER_01 30:34

I always talk about memories and making memories and doing as much as you can until you can't do it anymore. Like going to a New York trip that we do every year. Well, that's over, never gonna happen again. So I go in and I journal it in an app called Day One. I take pictures, I journal it, and sometimes my journaling is not great. But at least I'll be able to go back and understand all those feelings because there is a future for us. We don't know what it looks like, but there is a future for all of us, and at some point we deserve some kind of happiness in the next season or the next stage of all this, you know, and yes, there will be sadness and yes, there will be grief because we're without our spouses, but we deserve it. We've we're going through a lot.

SPEAKER_03 31:26

Yep. And I put in the chat, I I know Steve wouldn't want me to stop living. I know he wouldn't want his boys to stop living. And so I think that's an a way to honor him by doing or enabling the boys to succeed and showing them that we can go on amidst all the grief and sadness that we endured.

SPEAKER_04 31:46

Yeah, very hard. Yeah, 100%. Thank you. Thank you, ladies. So our our next one is called is under the anger category, and it's called What the Hell Happened to My Marriage? And I I don't know which one of you came up with the title, but I laughed when I wrote it down. Was it Karen? I laughed when I wrote it down. I was like, Yep, that's a great title. What the hell happened to my marriage?

SPEAKER_01 32:07

Um You know why I I said it like that? Because for any of you out there who used to go out to dinner with different couples, or you would take trips and traveling, we still tried to do that. And I would sit at the table and now it's really hard, and I don't even know if I want to do it anymore. And I would get really mad and sit there and say, How the hell did I get here? He can't even speak. I'm cutting up his meat, I'm trying to help him so he can eat. And all the other couples are talking. They're they're not helping me, they're all talking, and I always get to sit on the edge of the table, like at the last seat. So that's one thing that I think really makes you feel like you're no longer married, or sitting alone at night. I don't know if anyone's loved one goes to bed really early. Um, like right now, I'm not sure what's going on in there. Um, but I sit here alone and I'm like, I just can't I can't believe it. Sometimes I want to, and I'm thinking, oh, a little bit of relief. And then there's too much silence. So I don't know what I want, but I know that my marriage is different, right? I'm still committed, I still love him, I just want to respect him. But what the hell happened to it? It's gone. Yeah.

SPEAKER_04 33:37

I know for me it was I I think the anger piece was in a lot more of the earlier stages. I was just really mad all the time. And if you know anything about kind of anger, it's like think of it kind of like a like an iceberg where anger is the top of the iceberg, and really what's underneath is all the other things you're feeling, but what you kind of express is the anger, and that's where I just wasn't feeling all the other stuff. I wasn't feeling the sadness, the grief, all those things. And I just was really ticked off all the time about everything. And you know, I think that's normal, first of all. Like, who wouldn't be angry that you're going through this? Like, it's unimaginable for most people. Like, you everyone here understands what what's going on, but you know, I find myself now where like I think in the guilt realm I do have a little bit more of that, but I would say in the anger realm, for the most part, I don't really have a lot of that anymore because I've really kind of started to just pay attention to all the other feelings that go with it. So, you know, I've been able to kind of move through that myself. And I think that's the the interesting part of as we all talk about this, right? Is everybody's journey looks different, although the feelings that we have are the same, right? So, like when you feel angry, some people might feel more angry towards the end of this journey be for various different reasons. You may feel at the beginning, you may feel it all the way through. But I think that's the important part is that you recognize that no matter what you feel, like you're entitled to feel how you feel and don't let anybody tell you any different.

SPEAKER_01 35:07

And Linda talks about resentment. I definitely think that I don't know about all of you, but there are definitely days where I I resent that people that fight in their marriages or are mean to each other or they're constantly disrespecting each other. I want to scream at them and say, Don't you understand? It could be so different. You don't know how lucky you are, right? You don't know how lucky you are. Like I wish you know, no, Anthony and I never did that. We had a we we had a wonderful marriage, and I it wasn't perfect, but um I I just always think to myself, do you understand what other people are going through? Yeah.

SPEAKER_03 35:52

And I would just add for for those of you who have young kids, I don't think I felt a lot of the time because you're juggling, working full-time, raising young kids, trying to keep them have a normal as as normal a life as possible while caring for your spouse. I I just felt like I was on a hamster wheel of okay, who's going where? And then navigating who could take care of them while I could take care of Steve. It was just, and that's why I think I just locked it out for six months until after his death to really process what went on. No, I got mad, I got frustrated, I got resentful, but I just don't think I had time to even comprehend all that was going on.

SPEAKER_01 36:36

Like, I really thought when Anthony was diagnosed that we would have 10 years and then they'd find a cure. I'm like, okay, here we go. I'm gonna help donate money to the Alzheimer's Association. We have 10 years, he's really fit, he's strong, he works out. We got this. And truth be told, he has such a rapid progression that we're almost in stage seven after two and a half years. Yeah, so we know we have no crystal ball. Yeah. And obviously I was wrong. Anyway.

SPEAKER_04 37:12

Yeah, I was all I was gonna say is that I think for me, in terms of the anger, it was also expectations, and I kind of touched a little bit on that before, which is understanding my own expectations of other people helped me be less angry because a lot of the things I was mad about had to do with other people, how they were reacting, how they were treating me, how they were, or how they were not treating me, like right, it either way, and kind of starting to really have a realistic view of people, which is really hard because they can be great people in your life, and then all of a sudden realizing like they're not gonna be there for you, is it there's just so many complex things because now it's not just about your person that has Alzheimer's, it's about how your friends treat you, how your family treats you, or who shows up or who doesn't, or people that show up that you didn't expect to, which is a great lovely surprise. But those expectations, once I started to get them more in line with like who could do what and who was capable of doing what in my life, it was a little easier to not be quite so angry all the time. And again, not perfect, right? There's still times where people say things that I feel like I've got good expectations of them, and I'm like, oh my god, what are you saying to me? You know, so I I you go through it no matter, even if you think you got it under control, which is what I thought I'd do with my anger. I thought I under control, it comes up, it's gonna, that's just real life.

SPEAKER_01 38:32

Your family, your friends, anybody outside of this, they just don't understand. Yep, they will be supportive, they'll, you know, check in. This group here, and the n the the other groups that you're involved in, and all of the caregivers who are going through this understand it more than you know. And outside of that, it's very difficult. I've lowered my expectations. It's not their fault. They have that's not their fault, but I just don't think that there's any comprehension, especially you can't come in for two, three hours and understand what we're going through on a you know, on a day-to-day basis.

SPEAKER_04 39:14

Yeah, Karen, that's spot on. They don't get it because they don't live it, and that's there's nothing that's not their fault. It's not that is just the way it is. You know, end of sentence, right? Like that's just the way it is. So thank you, Gladys. That's it was a great conversation on anger. Um, our last one is joy. Is this Becca?

SPEAKER_02 39:33

Are you Um I I have no joy.

SPEAKER_04 39:38

You have no joy.

SPEAKER_02 39:39

You know what? I I you know what I will say is I am going um to tomorrow for a long weekend for a girls' weekend, and I'm feeling guilty. Uh I've got to get rid of that guilt feeling, but I'm going to go be with friends that I've known for a really long time. And I hate driving, but I'm gonna drive. It will bring me joy, and I will come back renewed and I I need it. That's I don't have joy right now, but I will maybe on Monday.

SPEAKER_04 40:11

But but you know what? I I'm I'm actually, you know, and don't take this wrong. I'm actually glad you said that because I think that's a really important point, which is you may not be, I mean, I had to really think hard, right, about the dermatologist, right? And it really was true. Like I was joyful. But like having to to know that like right now you don't have anything, but guess what? You have something coming up that's gonna bring you that happiness of being with your people. Like, I think that's really important to also recognize that you might not have it in this moment, but is there something coming up that's going to bring you some kind of happiness? You know, and I think joy is a big word. I mean, I we use joy for just the categories of this, but I think joy is a really big word to use because yeah, I mean, it is, and I think it's it's we used it as like a title-wise, but I think finding moments of happiness is maybe more realistic, right? Because joy is that big word, right? Where I don't think any of us are really feeling significant joy. Maybe there's moments that you do.

SPEAKER_02 41:07

Everything's muted, correct.

SPEAKER_04 41:09

I think that's exactly right, right? It's it's happiness with a tinge of sadness, like everything's got that kind of that veil over it, and that's that's really normal.

SPEAKER_02 41:19

Yeah.

SPEAKER_04 41:20

So thank you, Becca.

SPEAKER_02 41:21

Thank you. I just wanted to bring up, Sherry, that we might have a couple of questions, but I know you wanted to touch on um our small groups of the case.

SPEAKER_04 41:29

Yep, we are actually successful, they are. That is exactly where we are. So, Eileen, I'm gonna turn that over to you, and then we're gonna go to question and answers.

SPEAKER_03 41:37

All right. So, over the past couple weeks, we have been able to stand up um 10 support groups across the country. So we have broken some of them down by regions: Great Lakes, Midwest, South, Southeast. We have some larger groups in New York, PA, New Jersey, Rhode Island, Massachusetts. So if you want to be connected, and for those of you who are in the small groups, please put in the chat how you've enjoyed them. Send an email to Surviving the Now with your name, your cell phone number, and your email address, and we will get you set up on the small groups. It's been a really great experience to help get these off the ground.

SPEAKER_01 42:22

Yeah.

SPEAKER_04 42:22

And I think we're working our way across the country. I think we've got to the mid, we've got to the Great Lakes region. We're still working on time zones. So we're going across.

SPEAKER_01 42:31

And those formats are a lot different. Uh, it's a smaller group. It's all for you, right? It's over for you to share. Everyone gets to talk. It's uh and it it's a really great collaboration.

SPEAKER_04 42:44

And I think so, like I run, I've run the New York one for them, and really what I said to them is you guys do this is for you, right? So set up your group text, right? Figure out when you want to do Zooms, things like that. I I asked if I could be a part of it. I live in New York. I and they were lovely and said yes. But like it's really for you guys, right? So it's not for us to run it for you, it's for you guys to do it for yourself. Sort of like how Becca, Eileen, Karen, and I have our own group with the four of us. That's what we want you guys to have because it's been so valuable for us to have each other. So we want that to be the gift for you.

SPEAKER_01 43:17

And PA in New Jersey, you're rocking it. I mean, everybody's sharing pictures of their families, and you know, I was having a bad day, and I put a quote in there, and there's a a song about being strong. So feel free. I mean, it's you don't have to obviously jump in all the time, but it's really helpful to connect with people that are in your areas. Uh it's again a way for you to tell your story.

SPEAKER_03 43:44

Matt, and it's a little lifeline to ask a question every day.

SPEAKER_01 43:48

Yeah.

SPEAKER_04 43:49

And or or just say this happened and this sucked, or this happened and it was great, or somewhere in the middle, right? Everything in between, or, you know, how are you guys doing? Or just checking in with each other, just knowing that there's days where these guys just start a group text and just checking in, just knowing that there's someone else that I have there and that they know my experience is it's life-changing, it really is. Now I'm gonna cry.

SPEAKER_02 44:14

Yeah. The quick questions of like, um, you know, have you ever experienced this or things like that? It's just a way to feel connected with this horrible disease because if your your parents don't understand, your friends don't understand, but the people in the scruple will understand and can relate to the emotions, the the navigation of it all.

SPEAKER_01 44:37

And plus we can share things. I mean, somebody reached out to me about, you know, traveling in a lanyard, or, you know, all of us can share things that we're trying to do to cope, or using Jubilee, which is in replacement of the remote, or anything that is helpful, the smaller groups can talk about it a little bit more too. Yeah, absolutely.

SPEAKER_04 44:59

And and again, as always, you know, we've got a whole bunch of different ways you can reach us. So you can reach us through the survivingthenow.com website. I try to, you know, for those of you that have talked to me, I know I recognize a few of your names. I try to get back to you really quickly, particularly since I don't go anywhere at night anymore. So I try to get back as quick as I can. So hopefully I've I've reached out and I, if I miss someone, I always try to be like, so sorry. Um, Becca does an amazing job with our social media. You can reach out through that way. Kieran with TikTok, we've got all these different Eileen does the emails. So we certainly are trying to be as open as possible to taking questions, getting you connected, doing the things. You know, again, we're just in the trenches like you guys are. So um, we thank you. And so we have a few more minutes. Um, you want to get into questions?

SPEAKER_02 45:48

Yeah, I'm looking through the chat right now to see if there are any questions. I mean, I'm just first of all, I just want to say I'm proud of everyone to share their feelings so openly and even in uh the chat group here.

SPEAKER_01 46:01

Um does anybody have a question that they want to post?

SPEAKER_03 46:06

So, Becca, I see a question. Um, I have guilt that my spouse can't do anything that is productive around the as he used to always be working on stuff around the house, the activities he can do just feel childish to suggest to him to occupy his day. He's a dare daycare three days a week, but all the other downtimes are so idle, watching TV mainly.

SPEAKER_04 46:31

I can I can speak to some of that along like from stages. So I know that when Chris was in the middle stages, kind of around that four, he was starting to um, he was still working out a little bit at home. We had some free weights and things like that. I made sure he wasn't using the treadmill. But we tried to do some things that like as a group activity at the table, like we were doing building Legos and listening to music, and then I got some puzzles and we did so, and those things worked for a while, but I think you have to figure out what for us what worked was figure out what stage he was at and kind of what he was capable of. So I understand the idea of like it feels childish because at some point the puzzles became like 50-piece puzzles, they were bigger shapes, things like that. So it felt for me juvenile, but at the same time, that's the stage he was at. So if you can kind of think of it from their perspective of like this is where they're really thinking is that, it may not feel as bad because they probably don't notice if they're in that state where like if they're operating like an eight-year-old, they may not notice that the puzzle feels like an eight-year-old's puzzle. You notice it because you're like, oh my god, I can't believe we're doing this. But they don't necessarily notice. So we were trying to do things like that. Chris is now in 6C realistically, and he can't do any of those things anymore. So trying them, Legos, things like they're just frustrating. So at this point, there's not a lot that he does. So that's and it's really sad, but I'm no longer having him try those things because it was too frustrating. So kind of just see where you are of like what their age is kind of cognitively, and try and find things that you would. I always think about when my son was little. What did he do at kind of those stages? And that's been really helpful.

SPEAKER_02 48:10

Um, I would also like to add that you know, if anyone we're doing the small groups, we have our podcast here or Zoomcast, we're doing um social media stuff. But if ever anyone has something that they want to share, even anonymously, if you email their surviving the now Gmail address and want like us to put something out on our social media platform, like you want to tell your story, but you want to remain anonymous or you have questions that other people can chime into. Um, we're we're more than happy to do that. And I know a couple people, um, I don't know if they're on here, like have been encouraged to tell their story and the remarkable outpouring of support that they've had is it's really like brings a light, a positive light to what we're doing here as we're all just we're trying to raise awareness for the early onset piece of Alzheimer's.

SPEAKER_04 49:09

Yeah, yeah. And and you guys are all going through this. So, you know, one thing that works for me may not work for you, and that's okay, right? So just these are all just ideas, things of how we've navigated it. You know, again, how we feel today. We could come back to you next month and maybe we all feel very different. I think that's kind of the piece of like understanding how we're feeling, talking about it, being honest about it. Today has been a pretty decent day for me. Things have gone well at my house, so I'm doing much better. I feel pretty emotional about talking about this topic with all of you, so I feel a little more teary than I usually do, but that's okay, right? You're day by day, that's how we take it. All right, ladies. Well, we want to be mindful of time. Is there anybody anything else? Um, okay, so somebody I just saw what stage, how do you find out what stage you're in?

SPEAKER_01 50:02

Typically, your neurologist or your loved one's neurologist will do an MMSE, which is like a cognitive test, and they'll give your loved one a score. That's how we first determined that Anthony was a 20 out of a 30 and was eligible for Lekembi. And then they did that score, that test every six months. Now, unfortunately, he went from a 20 to a 16 in four months to below a 10 the next six months, and then they stopped doing it. So that's one way, and the score also relates to where you are. So typically 30 to what is it, guys, 22 is mild, moderate is around. Moderate, severe, and yeah, is about a 20 to a 15. And then, you know, getting going down, you get into the severe stages, or you can use the fast formula scale.

SPEAKER_03 51:00

Yeah, the fast scale, which is on our website and is a good guide to tell you with depending on how their activities of daily living or what they can and cannot do. Now, we will preface, and we did this last week, that it was only it was built for later adults with Alzheimer's. There's nothing that exists for early onset or younger onset, but it's a good, it's a good guide to help you know where you are in the journey.

SPEAKER_04 51:30

Right. And and that's super important. Guide is the key word here because it's not with younger onset, you're looking at people who are typically healthier. They're their age, right? They're cognitive, they're in usually work. So their brains, you know, they've got this different um abilities of whatever their jobs are, things like that. Eileen and I's husbands were both police officers, and there's some unique challenges with that of what their brains now is they're going backwards. Some of the safety things that, you know, I I found a bat by my bed one day, about two years ago, and I was like, what is happening? And he was like, It's for safety. So somewhere in his brain, he was going back. So I got rid of the bat. I was like, okay, we're not doing that because we don't want me to be getting up in the middle of the night and then I'm getting hit with a bat, right? But that's a that's a unique situation to his job. That's not something Eileen and I have kind of talked about that. And I have another lady that um was on earlier who's got a police officer husband. And so there are unique things based on their job, but it's it's you have to think of these things. They're younger, they're more engaged, they usually have family, kids, things like that that are going on. And so their lives, you're in a cognitive place that's different than if you were in your 70s or 80s. So it's just a guide, it's just a a good thing to look at to help you kind of figure out where exactly you are, but it it does fluctuate. It's not like a straight decline. Younger onset goes kind of more like a staircase, right? You kind of go down a little, you might flatten out a little, and then sometimes you might just go straight down for a while, but it is it is a little different than older. And did I miss anything on that, guys? No, no, great, great. Thank you all for joining us tonight. We hope that you got something from this. I know this was a hard topic, so take some time for yourself tonight. Reach out to us again. All our socials are out there, survivingthenow.com. We appreciate all of you coming and joining us, and we hope that this resonates with you tonight and that you find community with us together as a group and in your smaller groups. So thank you.

SPEAKER_01 53:32

Thank you. Thank you, everyone. Bye.