Ep #5 - Defining Younger Onset Alzheimer's (and Travel tips)

On this episode Karen, Cherie, Becca, and Eileen welcome back the community and focus on the details of what Younger Onset Alzheimer's is 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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Check out all social links for "Surviving the Now”! 

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Transcript

SPEAKER_00 0:33

Hi everyone. We just want to start by saying the information that we provide reflects our personal experiences and is informational purpose only. So we are not medical providers, we are not attorneys, and we are not a substitute for your professional medical or legal advice. You can certainly look up anything we talk about because it has been our experience and see if it will benefit you in your situation. We are so grateful to have all of you here again. What is this, our fifth session, guys? Fifth session. For anyone that's new, you can go back and listen to all the podcasts. Usually we have different topics. Most of the topics come from what you're asking us about. We don't want to repeat ourselves, but we certainly want you to get to know us. And so we're going to just introduce uh the co-founders of Surviving the Now. This is not a nonprofit. This is not an LLC. This is simply a group of women who are caregivers who knew this journey was tough for all of us and wanted to connect across the country. And I think we've done a pretty good job. So I'm looking at it on your faces and I'm getting away. Yes, you're right. Internationally, you are right. Um, so for tonight's session, we're gonna talk a little bit about the difference between younger onset Alzheimer's, which is an individual uh under the age of 65, and we're gonna talk about later life dementia, which most of us may have been more familiar with before we've experienced younger onset. We'll talk a little bit about those differences and we'll share a chart as we go along. And I've been getting a ton of questions about my recent travels. I just came back from a four-day trip. I had some tips and planning ideas and tricks. So for anybody out there who thinks that they may be considering it, but you're on the fence, I certainly can let you know what I did to make it successful. Uh, I can also tell you it was very hard. Any way you look at it, it's just not going to be the same. So we'll talk about that a little bit, okay? Um, let's start. Hey, Becca, why don't you just give a brief, quick intro and we'll go through the group.

SPEAKER_02 3:11

So, my name's Becca O'Neill, and I'm in Newport, Rhode Island, and my husband Charlie is about to be 54 and was diagnosed two and a half years ago. And as most of you know, getting to that diagnosis was uh a longer uh venture, but um that's me.

SPEAKER_01 3:31

Go ahead, Sherry. Hi everyone. I'm Sherry Davies. I am up in Saratoga County, New York. My husband, Chris, was diagnosed in 2019 um with the very early stages of younger onset Alzheimer's. He is 58 right now, and um, we are in kind of the same stage as Karen is with 6C, which is pretty moderate, severe. So that's where we're at.

SPEAKER_04 3:57

Hi everyone, I'm Eileen Ware. My husband Steve was diagnosed back in 2021 at the age of 53 and sadly lost his battle in January of 2025 after four and a half years, just shy of his 58th birthday.

SPEAKER_00 4:14

Thank you, Eileen. And I know some people did reach out to me to see if their loved one has passed away, if it was worth being on this call. And of course, I told them about you, Eileen. So I hope you're joining us. Um, my name is Karen Sandone, and my husband Anthony was diagnosed in September of 2023 at the age of 55. Like Eileen's husband was a football and baseball player, and so had four or five concussions. Is that the reason? We have no idea, but certainly could have contributed to this uh younger onset diagnosis. Uh, Anthony was diagnosed at a stage mild, moderate, and we're now at a severe stage. So we're moving fairly quickly. Um, so that is our story. I know all of you probably have similar stories. What I want to do, and we do this every session, is we're going to share the fast scale. This is just a reference. Some of our doctors use it, some of our doctors do not. This is typically for later life dementia, but we can use it to try and determine where our loved ones fall. It goes from one to seven F with obviously a mild cognitive impairment to severe dementia. Talk with your physician and find out. And and you're probably saying, why do I need to know? For me, it has been about understanding the next phase of this disease or understanding what I have to plan next. So when you're going from mild dementia to moderate, you have to think about them possibly not driving. When you go from moderate to severe, you have to think of care. So there are different stages, and it's really important that all of you know all those periods, and we'll talk a little bit more about that when we um get into our topics. We have this fast scale ad on the website, correct, Sherry? Correct. Okay. Um the only other important piece of advice or support that I want to give all of you is when we know who is in what area, it is really, really uh important that you connect with others and you get to share your stories on a more intimate level. So for instance, we had our first PA New Jersey phone uh Zoom last week. We had people. Um so we had a very small group and we were able to open it up informally and share our stories, and it was really a great platform. What we'd like for you to do, if you are interested, email survivingthennow at gmail.com. Let us know if you are interested in that, and we will try to connect groups. Okay. Now, the one big piece of that is the smaller the group, the better. So, what we believe is if you're over 12 to 15, it's too large. Then we're gonna split you up. All right, start smaller groups, get to know people, and maybe what will happen for all of you is you will have your own Becca, Sherry, and Eileen.

SPEAKER_04 7:50

Yeah, I was just gonna say, Karen, that's exactly how we we did it. We found one another and we were each other's lifelines on Saturday or Sunday morning.

SPEAKER_00 8:01

I agree. Now, what we're going to do is get into our topics.

SPEAKER_02 8:06

The chart that Karen's bringing up is going to be, as you can see, discussing younger onset Alzheimer's under 65 and later life dementia over 65. And I think that um what Karen brought up earlier is that we all may have people in our lives or know someone whose grandmother had dementia or Alzheimer's. And for the four of us, we were talking before um we opened up our session this evening, is is that really was our experience? And we were shocked and bewildered when the diagnosis came for our husbands. It was just absolutely unbelievable, incredulous that um someone so young could be experiencing these symptoms of what you would typically see an older adult. But here we are. And the reason that we want to bring this up is that we want more people to be aware, we want more doctors to be aware, we want to get diagnosis earlier before people lose their jobs. One of the first ones that we wanted to um talk about were uh life stages. This often occurs after retirement or um during later life transition. So you're over 65, you are looking at the back nine there, and you don't have as many responsibilities. Most people don't have as many responsibilities when you're over 65 as you do in your uh 40s and 50s when this is getting diagnosed. Um, this is happening during peak career parenting and financial years, which many of us can attest to.

SPEAKER_00 9:51

Yeah, I think that the interesting part about this is my husband and I had no idea that this was even something that we had to consider, which is why it took two years for us to get a diagnosis. We want to empower everyone to talk about this so that others who are walking in this path don't go through the same torture. And it is torture because you're waiting, you're just waiting, and they give you an MRI, and then they go, you know, they just rule things out. So it happens during our peak career. It also impacts employment. My husband and I were working, we had 10 more years left, and he was really close to losing his job, and I stepped in and uh made sure that he had he went on disability quickly. So some of you out there may have already experienced that. Someone messaged me the other day and said their spouse just lost their job. So we did talk about this at a in a previous Zoom. So please go back and and review that because it's really important. If you think that your loved one is close to losing their job, make sure that you talk to human resources. They're not gonna let you speak to them, but have your loved one speak to his or her employer about disability and medical accommodation. Okay.

SPEAKER_02 11:17

I would add to that too, Karen, is we did talk about this in uh previous um podcast, but going into later in life dementia, your retirement income, you're you're in that phase where you've already had those last 15 years in your 50s and early 60s to had that retirement. And when this comes along in your 40s and your early 50s, and that loss of income is it is so sudden. And and I've I've gotten messages as well on um our social media pages is what do you do? Like you're in the midst of raising children, planning for college, you might have kids in college, and all of a sudden, you know, you're fired from your job before you even are diagnosed. It's absolutely devastating. And if we can get more awareness, raise more awareness um where people can get diagnosed earlier, you have to make decisions that um are the right now decisions because you you have no choice and your whole life pivots, and that is part of the grief. You're dealing with the diagnosis, but you're also dealing with the grief of my whole life has just completely changed, and you're you have to put the pieces back together one step at a time.

SPEAKER_00 12:34

Anyone in the earlier stages, part of the disadvantage of I mean, this is never a good diagnosis, but of having a loved one so young is you really have to get your planning in place. Elder care attorney is your friend, uh, financial advisors, whatever it is you need to do, because we are in the peak of our employment. We still have 10 years, or if you're even younger, I know that there are several people probably diagnosed in their late 40s as well. Um, so that's really important. And health insurance. So I've heard from a lot of people that the newer drugs, Lekembi and Notanab, are not covered. Yeah, they're not covered and they're they're being denied. Keep pushing, do not accept the denial. Like, do something, do whatever you can to try to get that accepted. Again, I don't know your plans. I'm just telling you, be an advocate for your loved one. And if it isn't covered, another huge expense. Now, if you have your loved one on Social Security Disability Insurance, there is a two-year waiting period, and then they can go on Medicare. I assume everybody knows that. Or if you don't, that's very important to know. SSDI, if someone is diagnosed with younger onset Alzheimer's, it's compassionable allowance.

SPEAKER_01 13:59

It's the yes, the compassionate compassionate care allowance. Yeah. If you are diagnosed with, you know, as soon as you get diagnosed with younger onset Alzheimer's, go and immediately file for SSDI. Typically within within a month or two, you will get approved for it because it's under this special allowance. From the day you get approved, you still don't get a check for four months. I believe four is the number, but you don't get it for four. Is it five? Okay. So yeah, you have to wait a few months to get actually the first check, but you don't typically get denied right off the bat. You don't have to wait a year and a half. So you want to start that process immediately after you get the diagnosis.

SPEAKER_00 14:40

And just to add to that, I started Anthony on short-term disability. It lasted four months. I applied for SSDI and then long-term disability kicked in from his employer before he left in May of 2023. And he's still on it. And you can go back. Remember, medical accommodation is protected by the Americans with Disabilities Act. And this is obviously a disability. Okay. So those are just some quick tips. Um, Eileen, let's talk a little bit about the financial pressure and the parenting role. Would you take over those two questions?

SPEAKER_04 15:16

Sure. Thank you. Um, so in later life dementia, your financial structures are likely established. I know for myself, Jake and Cole were 10 and 13 at the time of Steve's diagnosis. I took care of none of the finances. I mean, I knew we had a mortgage, I knew we were preparing for college, I knew we had savings, but that was the extent of what I knew. Um, and I'll never forget the day Steve came in and told me he forgot how to write a check, and he didn't know the last time he paid the mortgage. And so, you know, I was thrown into being mom and dad, I was thrown into trying to navigate where all the passwords were, what was our situation financially, where were all of our accounts. It's just a lot. You go from being a team to then assuming not only the financial pressures, what care looked like. I know as as soon as we had our first meeting with our neurologist, the physician told me to make sure he doesn't drive and get our affairs in order. And so we needed to hire an elder care attorney. Like Fecca said earlier, talk about devastation, getting a diagnosis, and your world flipping upside down all the while trying to think about how do I tell a 10-year-old that his dad has a terminal illness and is probably not gonna be here, I thought 10 years, but it was actually four and a half. If if you don't know where any of your financial information is, start a spreadsheet. I have a spreadsheet now if every account number, password, link just makes it easier in the event that something happens.

SPEAKER_00 16:58

And what's so different about later life dementia is typically over 65, you're already on Medicare. You don't have to worry about health insurance. You've probably figured out your retirement for some of us, maybe not everyone. And so you're not like right in the throes of taking care of kids and college and weddings and all those other things that are going to be.

SPEAKER_04 17:50

So if there's any of you that need have questions, want to hear how I navigated it with Jake and Cole, please don't hesitate to email us and and I will get back to you. Yeah.

SPEAKER_00 18:02

And I will tell you, and I just saw a note, and I I it went by very quickly. The older kids really struggle too. Some of them are in denial, uh, they're not really sure what's going on, and they have their own lives to live. So you have to figure out what you're expecting from them. You may not get what you expect. And in some ways, you know, Anthony's three kids are absolutely incredible. I don't know what I would do without them. That's really hard to navigate. And talking to them and letting them know what you want is really, really important. Let them know what you need. I think that they would appreciate that. Uh, let's talk a little bit about social isolation and community perception. Uh, Sherry, were you talking about it?

SPEAKER_01 18:47

Yeah, so you know, I uh one of the things that when Chris got diagnosed, Chris had been a police officer, and then he was working as a private investigator at the time. And, you know, we we've always talked about he was a very smart guy, went to college, had very good social skills being in the jobs that he had been in. And then when he got diagnosed, people were like, but he looks fine, but he looks okay. But he well, yeah, he looks okay because he's physically fit and he looks put together, but that doesn't mean that his brain isn't having issues, right? And it was very hard to feel like somehow, like I was gaslighting people that he had this disease, and like it just it felt really wrong. Like I kept having to justify that he had this diagnosis. So I think early on that was a really big struggle for me until unfortunately, right, he started really showing the symptoms of it. And that's when you can kind of see the difference of who stuck around and who didn't. We just had this conversation yesterday where a friend of his who was an old co-worker called and is one of the two that still continue to call him. And I said, you know, I appreciate that because Chris is very socially isolated from a group of guys that he used to work with for many, many years. His close friends that he grew up with are phenomenal. So thank goodness he has that group. Socialization for him is really important. And on my end, it's it's been a forced thing about socialization, right? Is I still have my friends here, but now I can't see them. I can't go out at night without someone to stay at my house. It's not even that I don't have a social group around me anymore, it's that I can't connect with them in the same way because I don't have the ability to. Um, so that's a big challenge that I noticed. And, you know, then you go into just the marriage piece. When I heard Emma Willis talk about how she and Bruce Willis almost had gotten divorced because she thought he was just what, being a jerk or whatever, you know, people lost their minds. But I was like, yes, that's exactly right. Because for two years before he got diagnosed, I just thought he was checked out and like wasn't, you know, being a good husband and whatever. It is very common in this age group that people end up getting divorced. And I think now, can you imagine if we had actually gotten divorced and then you find out that he's got this terminal illness, it would have been horrific. But you see that as your marriage, not as your husband who is 48 years old, has Alzheimer's. Like Karen said, I never even would have imagined that. You know, my grandmother had Alzheimer's. I knew at 75 what it looked like, but not at 48. So, you know, I think there's so many things that you go through. What do you have to take on? I mean, I've had to take over the house, the banking, the like Eileen said, right? Like I have to mow the lawn, things that I hate doing, and you gotta figure it all out. And you don't have a choice. You know, what do you do with that? I mean, yes, there's small choices. I could hire someone to plow my driveway, but you still have to hire some find someone to come do those things. Something as simple as like, I have to drive everywhere. For some reason, to me, that's like one of the big things is I have to be the one to drive everywhere. And I don't know why it bothers me so much, but it does because it's such a reminder of what our situation is. But it's just a ri it's a reminder, right? Every time you get in the car. It is it's it's not about the driving. I like to drive, that's not a big deal. I I commute to work, but it is such a reminder of what's going on, or when I have to plow the drive. We've had a horrible snow up in New York, right? I'm plowing the drive. I'm mad when I'm out there because it shouldn't have to be like this, right? It's not that I can't do it. It's I shouldn't have to because of the Alzheimer's. So, you know, there's a lot of things in your life that get disrupted that you never would have imagined could have ever been taking place. And I think that, you know, the driving, right? Those basic things, those basic daily living things happen heartbreaking to watch. But there's also so many other things of I just can't go out on a Friday night with my friends for dinner if I don't have someone at my house. My parents live in Texas, they're in their 80s. You know, my dad's 79, my mom's 84. I'm not able to go down there for five days right now. I may have to travel to Austin, Texas from New York for a three-day trip. That is insane. I would never have done that before, but I can't leave him more than three nights with his brother, who is wonderful. But I just don't feel like that's fair because there's so much confusion along with that. You know, I think that's really there's so many things we could talk about this whole topic for hours and we'll touch on it some other time, but I think that's kind of a broad overview of what that looks like.

SPEAKER_00 23:19

Thank you, Sherry. Um, progressive pattern, the behavioral and executive functioning changes may appear earlier, and that's part of younger onset, where memory loss often is the primary early symptom. Anthony's early symptoms were it was word recall, and he was always really sharp at knowing where everything was, and he had trouble with his sentences and his thoughts, and that was like the first part of the progression. I didn't think much of it, but it did go very quickly. Uh, it's been three years, and like I said, he doubled because nobody tells us what this looks like, nobody can tell us how long, or what am I how long is he in this stage, or how how am I going to handle this? So if you look at the trajectory of your loved one's symptoms and how they progress, what our doctor said is you mirror that over the next year. And that has been exactly what's going on in my household. Anthony started at a three, and we're almost at three years, and he's a six. This is what I was told. I'm not telling you, you know, it should work for everyone, but the speed in which they progress is very individual to your loved one. Um, care planning, you go from not worrying about it to knowing that you have to do something about it, to OMG, can they be in the house alone? Maybe for a couple hours. Now they can't be in the house alone at all. You need full-time care 24-7. Then I'm at a point where I'm not sure I can lift him. I'm not sure he's not gonna wander. What am I gonna do? Do I need 24-7 care or can I handle it at night? So you're going to go through stages of care and each one gets more expensive. That is definitely something in stage five that you have to start thinking about if you've not already done so. Um, Medicaid is an option if you have everything in your name. But if your loved one, I think it's more than$7,000 of assets in their name, you have to do something about that. And an elder care attorney can help you. Yeah. Let's wrap up with emotional impact and the identity shift for a caregiver. Uh, why don't we go to you, Becca?

SPEAKER_02 25:55

Yeah, I will, I will say um this goes along with something else that Sherry was talking about, like the marital impact, but the identity shift for a caregiver is it's a different journey for every single person on here, depending on where where your marriage was. Um, if you were thinking about like Sherry didn't know what was going on, thinking about some drastic changes there. That has been the most challenging thing. And and my husband is still mild stage of um early onset Alzheimer's, and he gets really upset when I get on these podcasts. So I'm gonna bring it up that I'm not talking about all the challenges that we have in our marriage right now, which are really taking up all the oxygen in the room when we are both in it, because we don't know how to approach each other, and it's like life before diagnosis and life after diagnosis. And if anyone can understand what that is like, it is um it would take a whole hour to put into words, but that is definitely something that you know I would like to talk about in a future podcast because the caregiver those changing and shifting roles, everything is so nuanced, it happens so suddenly, and then all of a sudden you're looking at each other and somebody's feelings are hurt, and um, and it's a it's a tricky, tricky dance. And um, I'm sure I'm not alone. So if you can understand it's a difficult journey, that that's I'll end on that, Karen. But I would love to talk about that in a future podcast.

SPEAKER_04 27:31

I was just gonna say, you know, with Steve's journey, we navigated running through different caregivers, trying to figure out what Steve would tolerate, who he would tolerate. I had to flip it so that they could help me and not help him make it his own. So if anyone has questions about caregivers, palliative care, hospice, we went through it all. Um so reach out.

SPEAKER_00 27:55

You know, I'm at this stage where I'm no longer married, I'm a caregiver. Right. And you cross this line. Yep. And it's hard to go back. And the Pennsylvania and New Jersey group, we talked last week about the loneliness that comes with that. There's a lot of lonely, you have to figure out. Obviously, this to me helps me, but you definitely have a shift in what used to be a marriage. We had a great marriage, and we still love each other very much, but it's a very different love. It's kind of a parent child love now. Um unfortunately.

SPEAKER_01 28:34

And I agree with Karen because some of it is about safety, right? Like when you have to start thinking about safety all the time, like you did when you had taught like when my son was four and five, right? Like, is he gonna, is he gonna get lost? Is he gonna get out of the house and get and walk somewhere? Are the, you know, if you're out in public, like what does that look like? Just even right, like he doesn't cook anymore, like safety within things that you don't even think about. That spatial awareness, right? Like, is he gonna fall down the stairs? Right. We my husband, I had to move him to our downstairs bedroom probably about eight months ago because I was worried if he came out of the upstairs bathroom, the staircase is right there. And if he took a wrong turn, he was going down the stairs. So realized that one pretty quickly, like he had to relocate. That changes your marriage right there when you're not, you know, sleeping in the same room because he has he has nighttime seizures, uh, these jerking motions. So we couldn't even sleep to I couldn't sleep to begin with. That changes everything, right?

SPEAKER_00 29:30

And we're not telling you all this to scare any of you. That is never our intention. We go through denial, and then there is some acceptance, and then you see another symptom, and you have to accept again, and you go through grieving. So we're just trying to let you understand what our experiences have been like. Yeah, you're not alone, you're not alone.

SPEAKER_04 29:54

Everyone, and I would just add, therapy was a godsend for me to get out my feelings during all these different transitions and phases of the journey. It sucks, but it's reality.

SPEAKER_00 30:05

Let me just take five minutes to talk a little bit about traveling. Whether you're traveling to visit your kids or traveling on a plane, whatever you do, it looks differently. Anthony is at a level 60, which means we are getting close to um incontinence. So I was a little bit nervous, but I wanted to take the chance because I'm a pretty good planner and I feel like I'm pretty strong and I can handle it. Uh, it was tough. I'm not gonna lie, it was tough. The way I planned for an 8 a.m. flight out of Philadelphia is prepare, prepare, prepare. Get everything set the night before he was showered. I even had him dressed. He went to bed dressed. Okay, that was one of my I was like just he didn't it didn't matter. So that all he had to do is get up and brush his teeth. I carried everything. I carried everything. He did not have to worry about a thing. We use a I have dementia lanyard. It's not, and I know some people use the other sunflower lanyard. I use a dementia one because I want people to know if he gets lost, my name is on the back. That is the reason he's getting lost, and you can physically see the changes now with my husband. So my name and and cell number is on the back of the lanyard, and I got it on Amazon. I'd be happy to share it. When we got on the plane, I just did everything. I helped him with his iPad, I got him set. When we got to the hotel, I kept him on schedule. We I did not go to the pool or the beach for seven hours a day. I was back in the room at two o'clock in a dark room while he slept, so that we could have dinner. I'm not so sure that everybody has to do that, but I wanted to keep him on his routine as best I could, and I think that that was very helpful. I gave him his meds at the same time that I always do. Uh, we we stayed on the ground floor, so we did not have to go up and down elevators. We were right outside the pool, which was really convenient, and luckily we traveled with other people. I would never travel alone anymore. And the other two couples were amazing and very helpful, although they didn't understand because unless you're in this 24-7, you do not understand, but they were helpful enough. I packed a travel kit that had another change of clothes and dude wipes and other things just in case. I just wanted to be prepared, and I gave myself a lot of grace. I did it, I got there, so every time I met another goal, I was like, okay, we're on the plane, okay, we're in the shuttle, okay, we're at the airport. I will tell you that's probably our last trip, and I knew it. And I knew it. You know when things are the last, you know when they stop driving or they have to stop driving, you know when they need care. I know that this was probably our last trip. So I would be happy to give you any more information. Um, it was very structured and it was bittersweet, but um glad I did it. I have no regrets ever building memories with my husband. Uh Sherry, do you want to tell us what everybody's asking? Yep.

SPEAKER_01 33:43

Um, a lot of it is uh the question is like, how do, you know, how do you deal with feeling alone? That's a big one. That's a big one.

SPEAKER_00 33:52

That is a big one. Yeah. Yeah.

SPEAKER_01 33:55

I know for well, I was gonna say, I know for me, Eileen touched on it, like I definitely go to therapy, right? And I talk to my therapists about all these things because, you know, even though she doesn't quite understand the dementia piece as well, but that's one piece of it. I would say finding these four, you know, the four of us together, our talks that we have, we are in constant communication with each other when something happens. I always have them to bounce things off of or just vent or whatever it is. Um, having that community for me has made me feel so much better. Because I know before Becca and I met each other, before I met Karen and Eileen, I spent a couple years all by myself and it was really horrible. It was hard to deal with this. And so having any kind of community, whatever that looks like to you, it doesn't have to be therapy. It could be, it could be if you go to church, it could be a support group, it could be just ladies you go to lunch with, it could be whoever, but finding your people for me has been a big piece. That's true.

SPEAKER_04 34:53

I agree. I was gonna say I felt like I was on an island. And while support groups are great, I was 47 when this all happened, and I would get the look of you're so young. I I didn't need that. I needed the day I met Karen, who I felt like she was telling our story as well, and it was literally the best thing ever. So find your people where you can just talk about the real stuff and you have no judgment. And I think it's hard for friends who aren't on this journey to not judge because they have no idea, and that's okay if your friend and your family just don't get it because they're not walking the walk with you every single day.

SPEAKER_00 35:38

Uh for for me, I am grateful that I found my true love in my life, and a lot of people never find that. And so when I think of how sad and lonely I am, I appreciate that Anthony and I had an incredible marriage, an incredible life. I don't know why this is happening to us, but I know how I'm going to handle it. And so that keeps me going. Um, but thank you. That was a very good question. Becca, do you have anything to add?

SPEAKER_02 36:18

I I would just um, you know, I'm I'm a talker and I like to express myself and I have found that oh, especially last year and going into this year, um not everyone wants to listen to you.

SPEAKER_03 36:35

Yeah.

SPEAKER_02 36:37

So I've learned if you're, you know, going out for a girl's night or a guy's night, sometimes people just want to have like a nice time and and learning how to shelve my emotions has been a little bit of a challenge that I'm still learning. I know this doesn't answer how do you feel less alone? I don't know how I got here. Um but I'm talking about it.

SPEAKER_00 37:02

You you want to talk about it all the time because it's your life.

SPEAKER_02 37:06

It's my life, and um, you know, and I've I've learned that this year I'm really going to put more intent into having a time to express my emotions and be in the moment more, which is it's a challenge. It's it's a challenge. Everything's a challenge. Like finances are a challenge, health is a challenge, finding the time is a challenge, um, not knowing what to do is a challenge. Like it just seems to be like whack-a-mole. And which challenge are you gonna like address in in today or tomorrow? And which one can you let go for another week? But we can do this.

SPEAKER_00 37:47

Yeah, we we can do this. We have to do it.

SPEAKER_01 37:51

And one of the things I will say is think about who are your people in your life that are your listeners? Who is the one that actually is gonna listen to you about this, when, what your feelings are, what you're going through, whatever that is. Kind of figure out who those people are. Figure out who your respite people are, who are the ones that like you're gonna just go out, like Becca said, right? Go out on a Friday night, you know you're gonna have a good time. You're probably not gonna talk about Alzheimer's, but like you know you're gonna have a good time with them, right? Who are your helpers? Like, who's that person that's gonna come over if you need to go out of the house for a half an hour? Who's gonna come sit at your house? So some of those people might have multiple roles, but some of them may, you may have friends that are just respite and they're just as valuable as the people that maybe are your listeners or your helpers. So I think once you, you know, like for me, once I kind of figured out who in my orbit kind of fit what different roles, it was a little more helpful because then my expectations weren't like everyone should be listening to me or everyone should be helping me or whatever, right? Like you can kind of figure out who's capable of what in your circle. And some of those people, if they're none of those things, like you got to think about that as well. Like, how much time do you really have then to like spend with those people?

SPEAKER_04 39:05

You're gonna find people who you thought were gonna be lifelong friends, you lose kind of connection with them because you're on a different journey, but then you find people who are gonna be your people throughout this journey. Um, I tell Sherry, Karen, and Becca that we're bonded for life now. So they're never gonna get rid of me, but you you find your people.

SPEAKER_01 39:27

Yeah, yep, absolutely. Um, here's a good one for um Karen and Becca. How did you make the decision about selling your house? And did you what would, you know, like kind of like did you decide one level, two level, like how did you kind of decide about selling your house?

SPEAKER_02 39:43

Um, I would say we had no choice because we had just bought a big home with a mortgage and my husband lost his job. And thankfully we were in a position where, you know, we had the funds to to float ourselves, but I could just like the I could see the future and it didn't look bright if I had stayed in that home. So we made the decision to downsize to a two-family. Um, I was thinking long term for options if in case he needed to go into care, the care could be in the other family home in our two-family. And then I was thinking long term for myself is that I would be able to um rent it out if I needed to long term. And I I don't know if it's forever, but it's for right now. And it was purely a financial um move.

SPEAKER_00 40:34

My decision was financial, but also stress relief for me. So I am moving to a 55 plus community where I do not have to do any of the outside maintenance. Taking care of the home has become very hard for just me. And then if I have to pay 10,000 a month for care, it was just financially stressful. So I thought it would be, and by the way, I'm very, very sad. It was a really hard decision. I'm not saying that I'm truly religious, but I asked God for a sign, and we had like four snowstorms. And I could not use the snowblower. I had no idea how to use it, not like Sherry. So to me, that was my sign that I have to put myself in a situation where it's a little bit easier. I also will have a new home where there's a loft with a family room area, a bedroom, and a bathroom. So if somebody lives with us, they'll have their own space upstairs. And then there's two bedrooms on the first floor. I've already had people reach out to me from the new community. So it looks like I will have a lot of new friends. Um, I wasn't planning on all of that at my age, but I'm looking forward to it. And between now and September, I'm just not sure what's going to happen. So that is probably my biggest stress piece right now. Uh, am I moving in with a caregiver? Am I moving in by like I just don't know? But I'm doing it. And it will be financial freedom and a little bit of maintenance freedom for me. So that is that is my story. But anyway, it is 7.55. Is there anything else, Sherry, that's pressing what we need to do?

SPEAKER_01 42:27

Yep, we just have one one more. Is just there was a question about um, do we have caregivers in the home? And so I I can start. So I actually have um I am able to work two days in my office and then work from home. So during the two days that I'm at work, I do have someone that comes in my home. She comes in, makes sure that during the day he's got lunch that he's taken care of. And then he's here for like maybe an hour or two by himself before I get home from work. We're still at that point where he can, in the daytime, have that short period of time, but I can already foresee that that's dwindling rapidly. So I'm gonna have to make some different plans fairly soon.

SPEAKER_00 43:11

Yeah, I'm 24-7. I have somebody in the house. Um, and then when I come home, I'm the caregiver, and through the night, we don't sleep a lot here. So um I lean, you had someone in your home too, right?

SPEAKER_04 43:24

Yeah, I had 40 hours of care during the week, and then I did nights and weekends. Um, but I was also very blessed to have one of my siblings come up and move in with us. Um when I had to go into work and stuff as just another buffer in case he was a very fit, active guy who was very strong, and we were afraid that if he didn't like the caregiver, we weren't sure what he would have done, but never got aggressive and we made it. But I did also look at memory care um in the event that he had to be placed, and that's okay. Right. You need to someone put it in the chat. Go look at your the top three places and various times of day. It's it's not a failure. It's what may be needed at the time. And so many people feel guilty. You gotta do what's best for your situation.

SPEAKER_01 44:18

Yeah, absolutely. You know, and that changes based on where you are too, what stage you are. You know, Chris is is a little far behind um Anthony in terms of care 24-7, but the rest of the time it's it's like you guys said, it's me, nights, weekends, the days I'm off. Um, when I work from home, I'm in and out of my office, you know, between sessions, like checking, you know, are you okay? Do you need something? What are you know, what are we doing? So it's it's not easy for sure to be the home caregiver.

SPEAKER_00 44:48

It also depends on the aggressiveness of the person. Some of us have loved ones with a lot of aggression. I'm fortunate that I don't. Obviously, that is a whole other level that we can talk about because memory care is probably the safest at some point. Um, have we answered everything in the chat, ladies? Are we good?

SPEAKER_01 45:13

I I think for now, because again, we're running out of time. We can always add more that we can take over at some other point.

SPEAKER_04 45:19

Please email us if you have specific questions or want to connect. Um, we are gonna look forward to making connections for people so that you have a little group.

SPEAKER_00 45:29

And if you have not started uh following us on Facebook, uh Becca does an amazing job um managing our Facebook page called Surviving the Now and our Insta at SurvivingTheNow. Um Sherry manages the website, it's always up to date. Uh so please uh follow us. Um look for our Instagram. I always track our journey and hopefully I'm helping others. So we appreciate all of you. Have a great evening and thank you so much.

SPEAKER_02 46:04

Thanks everyone.

SPEAKER_00 46:05

Thanks, everyone.