Lauren Dykovitz is a writer and author, who lives in New Jersey with her husband and two black labs. Her mom was diagnosed with Early Onset Alzheimer’s in July 2010 at the age of 62. Lauren was only 25 years old at the time. She quit her full-time job and became a caregiver for her mom at age 28.
Lauren started the Life, Love, and Alzheimer’s blog and social media pages to document her journey and share her experience as a caregiver. She self-published her first book Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s in 2017 and her second book When Only Love Remains: Surviving My Mom’s Battle with Early Onset Alzheimer’s in 2021. Although her mom passed in April 2020, it is Lauren’s mission to help others on their Alzheimer’s journey by sharing stories and lessons from her personal experience. In many ways, she feels like she is just getting started!
Lucas: Welcome to Bridge The Gap Podcast, the senior living podcast with Josh and Lucas. We have a great author on our program today. We want to welcome Lauren Dykovitz. She’s a two time author, she’s an expert on loving someone with Alzheimer’s and a brand new book out “When Only Love Remains.” Lauren, welcome to the show.
Lauren: Hi, thank you so much for having me.
Lucas: Thank you for spending time with us today. Amazing things happen when you step out there and you start to talk about the personal details around people’s personal stories and so many times people hold things close, but you’ve chosen not to do that. You were 25 years old when your mother was diagnosed with early onset Alzheimer’s. What was that like?
Lauren: Being 25 you know, I didn’t know anybody else that had a parent that had Alzheimer’s or anyone that was going through it. I really didn’t know anything about the disease itself and kind of just thought it was your typical memory loss and she’s forgetting things and stuff like that. So I really didn’t know what to expect or what to think about it and just felt really alone and isolated because I didn’t know anyone else who was going through it or anyone who could relate to what I was going through.
Lucas: As time has progressed and you’ve put this story out there. What were some of the aha moments that kind of felt alone? You didn’t know if anybody else was facing this, what did you find?
Lucas: I think it was just realizing that there are a lot of people that are dealing with this. It was just maybe people weren’t talking about it, or I just hadn’t connected with them yet.I felt like I was the only one my age that had a mom that had Alzheimer’s and the things that I was feeling, I felt like a crazy person for some of the thoughts and some of the feelings. And like I was just losing my mind, suffering with my mom, losing my mom slowly to the disease. And once I learned that there were other people who were going through it and they did have some of the same, most of the same thoughts and feelings that I did, it really validated my experience and just really made me realize that I wasn’t alone. There were a lot of other people going through it. I just didn’t know them in my real life, but I was still able to connect with them, thanks to social media and blogging and things like that. And it just really made me feel a sense of community and that I wasn’t crazy and that I wasn’t the only person that was dealing with this.
Josh: Well, you know, before the show we’ve heard talking about when you actually learned about this at the age of 25, we were talking about that was probably around 2010. And we were talking about even how much technology has changed since then in such a short amount of time to where, I try to think back and you couldn’t find really a lot of online resources about any topics, much less like social groups, where you could share your stories and things like that. What would be different? I mean, what do you hope is different for people that are finding out this news? Let’s say they’re at the same spot you were when you were 25 and they’re finding that out today. What do you hope by sharing your story and doing all that you’re all that you’re doing that their experience through this difficult time? How do you hope that’s different?
Lauren: I just hope that once they get the diagnosis that a parent has Alzheimer’s disease, they can just do a quick search on Google, Facebook, Instagram, podcasts, wherever, and find something right away as what they’re looking for as a personal connection to someone else that’s going through it. When my mom was diagnosed I Googled it. I Googled Alzheimer’s or I don’t even know if I knew the term early onset Alzheimer’s, but just trying to look up any information. And all I could find was the Alzheimer’s Association website, which they have a wealth of information and a lot of resources on there, but it wasn’t really a personal connection to someone that was sharing their story, that someone who looked like me or was my age or someone that I felt like was in my life stage that I could relate to. And that’s really what I was looking for someone else who was going through this, that I could connect with sharing personal stories. And now, I’m fairly confident that just a quick type in the search bar on Instagram, they’ll find dozens, if not more accounts of young women or women of all ages and not just the parent that has Alzheimer’s, but someone who’s caring for a spouse or a grandparent. And then in finding that they’ll pretty immediately realize that they’re not alone. They’re not the only one going through this and that they’ll have someone that they can reach out to and somewhere that they can go turn to for support and just to try to help them through what they’re going through and how they feel and just all the things that I suffered silently with for a long time.
(5:45) Josh: So you are using your writing skills to give back, to share very personal stories in hopes that other people realize that they have support groups and kind of help them know that they’re not alone. And other people go through this. I think some of the interesting things about your story, there’s a lot of interesting things, but this was as sometimes happens with early onset, a 10-year battle or time period where you helped your mother, you lived through this for not just a short amount of time, that’s essentially a decade that you lived alongside your mother, helping her with this. And it sounded like, and you correct me if I’m wrong, you were going through some big life changes yourself. You got married during this time period, which was also an emotional high for a lot of reasons. Can you talk us through just some of those periods through 10 years of life? And I’m sure there were highs and lows just like in anyone’s life, but alongside a mom who has Alzheimer’s during that.
Lauren: You know, I was 25 when my mom was diagnosed and I was 35 when she passed away. So if you think about those years between 25 and 35, they’re pretty formative years of your adult life. I got engaged to my current husband. I think it was days or a week or so after my mom got diagnosed with Alzheimer’s and just the realization that my mom wasn’t going to be able to help me plan my wedding and five years prior, she was very much a part of my sister’s wedding and planning that and just seeing the major difference between what she did then and what she was doing now, which was pretty much nothing. She really couldn’t help me. And I really wanted to include her and I wanted my mom to be there and I wanted her to be a part of it. But I had to realize that it was never going to be the way that I had always pictured.
It was really, really difficult to try to just press on and continue planning and living my life and also trying to include my mom when I could, but realizing that it was almost harder to do that, to bring her along and things like that. Actually I think it was during the year that I was planning my wedding, we bought our first house. And again, it was the same thing. My mom couldn’t buy me like a house warming present. I remember she would come over to my house and she would keep her coat on and she would keep her purse with her. It was like she was uncomfortable in her own daughter’s house. It was like, it was a stranger’s house and she was just uncomfortable being there.
And I wasn’t going to have what my sister had because my sister is only 11 months older than me. But she married her high school sweetheart. So she was married a few years before I was, and it was a drastic difference and realizing that I was never going to have that.
I was working my first full-time job at the time. I was a police officer and working shift work and like a crazy schedule and helping other people, but I couldn’t help my own parents. And after time, realizing that this isn’t what I want to do with my life. So I quit my first full-time job as an adult. And I started helping to take care of my mom, which I did off and on for a few years. Because life does not stop when your parent is diagnosed with Alzheimer’s. And I moved away twice during her illness to support my husband’s career and how difficult that was being away from her. And then moving back, eventually and taking care of her again. And so there’s just a lot of things in there that it’s just incredibly difficult to manage all of that and deal with it while your parent is suffering from this disease, you feel like you have to put it all on hold. So many times during her illness, I said kind of mostly to myself, “I’ll just wait until after she dies.” And then after my mom dies, I’ll do the same or I’ll do that, or I’ll pick my life back up again. And I lost a lot of years in that time. And it was also, almost like living two parallel lives, one of high and joy and success and all the positive things in life. And then one really low life of negative depression and grief and guilt, and just every bad emotion that you can possibly think of, but you’re living both of those at the same exact time. And so it’s just really hard to, to kind of balance that and to just keep living your life with all of this juggling all of these emotions and all these things along with whatever life throws at you during that time, 10 years is a long time.
Josh: You touched on a lot there, but one thing I want to kind of maybe dissect a little bit on because of our listener base, which is majority senior living professionals that I think even from personal experience if you haven’t been through what you’ve been through, it’s always hard to relate, right? But as senior living professionals, we see the other side where we’re being introduced to people like you on a daily basis. I would say one of the many emotions that you pointed out highs and lows that you were going through, you mentioned the word guilt. And that was something that I see as a pattern that almost every single person, family member, adult child that comes into one of our living communities at some level there’s a certain amount of guilt. And I’m sure there’s lots of reasons for that, but help us understand as an adult daughter, what is the best thing that we can do as providers in helping to support an individual through this difficult time in helping with a family loved one?
(12:25) Lauren: I think people are looking for a solution to this disease and because you can’t fix it and you can’t make your loved one better, you’re always going to feel guilty for something. And I don’t know that there’s really any way to take that away or to make that go away. There’s no way you can do that for someone else. And there’s no way for someone to do that for themselves. It comes with loving the person that much, that you don’t want to see them suffer, and you don’t want to see them go through it, you just want to fix it. You just hope that you can someday do enough, that it’s going to make them better or make things okay. And there’s enough is just impossible. That’s not a standard of care because what’s enough? You’re always going to be pushing the bar farther. And instead of trying to do enough, people should just focus on trying to do their best. And I think that’s for care providers just to support and encourage people in that their loved one is being taken care of, and that they’re doing the right thing by getting them the best care that they can and that you don’t have to be there tending to every need of your loved one, as long as they’re being cared for, receiving good care from someone and you’re responsible for that, then that’s your way of caring for them. And that’s you doing your best. And just to let them know that, they’re just trying their best and that that’s really all that they can do. And they’re probably always going to feel guilty about something, but that doesn’t mean they’re doing a bad job. That just means that they love the person that much, that they wish they could always do more, but as long as their loved one is getting good care, that’s really all you can do with this disease.
Josh: As your mom progressed in the disease, can you think back to any moments or people that kind of surrounded you and helped you through that time that were notable or characteristics that you think: that was really helpful to me in that time and place of what I was through.
Lauren: I mean, we did have some family members who helped out a little bit just with maybe coming over a day or so, or taking care of my mom. I did not feel like I really had that support from my close friends or close family members because they didn’t understand what they were going through either. But once I connected with some people online who had been there had been through what I went through and could share their experience. And just someone saying that, you know, I get it, I understand, I know what you’re going through and making me feel like I wasn’t crazy for thinking the things that I did and that this is really hard. And that’s why you feel the way that you do. And just you know, knowing that someone else understood what I was going through.
And I knew that they weren’t going to be able to take my pain away or necessarily make it any easier. But just knowing that someone was making me feel validated and heard and really no one in particular, but just some people that I met through my writing, people that I met online and social media, I think the really good resource is, is someone else who’s been through what you’re going through and that they can let you know, there, there is light on the other end and you are going to get through it.
Josh: That’s extremely helpful. I think one of the things that you touched on is and I, I can’t state it as eloquently as you did, but from a family member’s perspective, I do think, and I hear a lot that one of the big things that causes and fuels a lot of the guilt is them feeling like when they’re placing or partnering with the community, they feel guilty because they, they feel like somebody else is doing it and they’re not doing it all. And I think for a lot of people, it is comforting when they hear you talk about having been down this road, that it’s okay. You don’t have to try to be everything to them. And in many cases, and in most cases you can’t be. I’ve also heard it say, you know, you’ve got to be able to take care of yourself before you can even take care of them. And through the years, how many people I’ve seen that come to our communities after probably trying to do that for so long. And it’s so negatively, it’s probably taken years off of the caregiver’s life. And so it’s such an important role, and it’s such an interesting time. I know your book, your writings, your Clubhouse presentations, your podcast, and all that you’re doing is such an awesome investment you’re making into the support community. So thankful for the resources that you’re providing.
Lauren: Well, thank you so much. That means a lot, I can just hope that by sharing my story and things that I’ve been through and lessons that I’ve learned, that it can help someone else who’s going through it, and maybe they can avoid some of the suffering that I went through when my mom was living with the disease.
Lucas: Lauren Dykovitz, two time author, “When Only Love Remains,” the new book out, you can get it on Amazon. We’ll make sure that we connect in the show notes, all of your links and your Instagram page and links to the book for people to connect with you. Thank you for spending time with us today and sharing your story.
Lauren: Thank you guys so much for having me and giving me the opportunity to share my story.
Lucas: To all our listeners, if you want to connect on a deeper level, go to BTGvoice.com and you can download this episode and many others. Connect with us on social, send us a message like, and comment on our LinkedIn page and others. Thanks for listening to another great episode of Bridge the Gap.