Hope for living, loving and caring with no regrets!
This week, we have Encore Episode #5 where Rayna Neises, your host, talks with Lauren Dykovitz. Lauren is a writer, author, wife, and dog mom. She became a family caregiver when her mother was diagnosed with early-onset Alzheimer’s in July 2010 when Lauren was only 25. Lauren started the Life, Love, and Alzheimer’s blog and social media pages to document her journey and share her experiences. She has written two books, and last year started offering online mentoring services for Alzheimer’s daughters. Lauren has made it her mission to help others on their caregiving journey and shares the following:
- The journey can be difficult, isolating, and hard to accept.
- Memory issues are not the only symptom of Alzheimer’s. Other things like having problems doing things they have always done, becoming withdrawn and less talkative, and vision problems can be signs too.
- The diagnosis can feel like death because the relationship you knew or hoped for will never look that way.
- Put the focus on your loved one and try to make them happy and bring joyful moments into their life.
- Be mindful and live in the moment.
- Connecting over the shared bond is powerful. The more you share your story and talk about it, the more you realize you are not alone.
- To connect with Lauren, you can find her on social media and at her website at https://lifeloveandalzheimers.com/. You can find her books on Amazon.
*Transcript is an actual recount of the live conversation
We’ve reached the end of 2022. And today we get to enjoy the number five most downloaded episode with Lauren from Alzheimer’s daughter. Welcome to A Season of Caring Podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises your host. Lauren is a writer author who lives in New Jersey with her husband and two black labs. Lauren’s 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 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, Lauren started offering online mentoring services for Alzheimer’s daughters in 2021. She is also a contributor of Alzheimer’s Disease.net and a member of Alz Authors. Although her mother passed in April of 2020, it is Lauren’s mission to help others on their Alzheimer’s journey to share stories and lessons from her personal experience. In many ways, she feels that she is just getting started. Lauren. I’m so glad to have you here today. Thank you for joining us.
Hi, thank you so much. I’m glad to be.
First of all, I’m really sorry for your loss. I know it’s such a long journey and so difficult, and it can be such a hard adjustment to life without them here. But I know that the way that you were able to care for your mom and be a part of that team with your dad was such a blessing to her. So thank you for that. And for then taking this experience in life and turning around and offering it to others.
What was it like for you when your mom was diagnosed?
So she was diagnosed at age 62, as you had said, and I was only 25 years old. So it was, you know, a shock and just totally unexpected. Thinking at that age, that’s something we would be dealing with. You know, it’s not, not something that I ever thought about or expected. We didn’t know anyone who had had the disease. No one else in our family, no friends, nobody. So I didn’t really know what to expect with the disease and the decline. And I also just, just felt very alone and isolated in my experience because I didn’t know anybody that was going through it. The same month that my mom was diagnosed. I also got engaged to my now husband. So the first thing that I did without my mom was planning my wedding and my sister had gotten married about five years earlier. And my mom was like very involved, like buying her, all the things and helping with the whole process. And she couldn’t do that for me. She couldn’t do that with me. And I tried to include her as much as I could with certain parts of the planning, but it was very difficult as her disease took hold pretty quickly. And she started to decline and lose a lot of those conversational abilities and just the memory and her behavior was different. So I did my best, but needless to say, it was a very long, difficult first year of her disease. And I was just really trying to accept it so that I could deal with it and move forward with life and helping her in the journey. But initially, yeah, it was, it was very difficult, very isolating. Just very hard to accept and didn’t know what to expect.
It sounds like it impacted her pretty significantly by the time she was diagnosed. Did you see some symptoms and warning signs maybe before she was diagnosed now that you know, looking back?
Yeah, I think we started to notice symptoms. Maybe I would say about a year or so before she got the diagnosis, but nobody really put it to that. Like thinking that oh, This might be Alzheimer’s it wasn’t a thought in our minds initially. Looking back now, I can see things two or three years before her diagnosis that I would now attribute to her Alzheimer’s. But at the time, I didn’t know it. She had a short-term memory loss, just asking the same question or telling the same story over and over again. She would forget how to do things that she had done every day. For as long as I could remember, just like fixing her ice tea, she would always order like an unsweetened ice tea and she always put like a sweetener and like lemon it. And she just forgot how to do that. She just would get the ice tea and like, didn’t know what to do with it. And she also became very socially withdrawn. Which for my mom, my mom would talk to a wall. Like she, she talked to a rock, like she would talk to anything. And the cashier at the grocery store, like knew my sister and my like life stories, because she would just talk and talk and tell everyone. And whether you wanted to hear it or not. And we really noticed that withdrawing from that. And she wasn’t having these conversations. She wasn’t being social. She wasn’t her like normal social butterfly self. And again, that wasn’t something we would have ever attributed to her Alzheimer’s but later, you know, realizing that well, she was having memory problems and was probably feeling very self-conscious about forgetting what she was saying or forgetting words for things, or just not knowing how to be a part of the conversation. So she became very withdrawn from that. And would just sit quietly kind of like on the sidelines, which she had never done before. We would notice that she wasn’t participating in the conversations anymore. She also had visual problems which again, I would have never attributed to Alzheimer’s, but it was like, she couldn’t see things in 3d. It was like, everything was just flat. Everything just blended in. If she would go to pick something up from the counter, like she couldn’t find it. She couldn’t put her hand on it because everything just kind of blended in to her and she would reach for things. Like reaching past them or reaching next to them or reaching for the door knob on the wrong side of the door. And just things that we thought were odd and strange and definitely different for my mom to be doing that. But we didn’t attribute it to being Alzheimers. The memory was probably the only thing that I attributed to this might be Alzheimer’s. And so my sister and I pushed. Both my mom and dad, like my sister and I started talking about at first and, oh, I noticed this too and, and keeping track of things. And then we brought it to our parents’ attention and they were very resistant to dealing with it. They did not want to go to the doctor. My mom would say, I’m fine. I’m just getting older. This is normal. But I knew it wasn’t. My sister knew it wasn’t. Eventually, they did go to a doctor. Eventually they did get a diagnosis. I would say it was probably almost a year from when we addressed it to when she finally got the diagnosis. But looking back, yeah, she probably her late fifties, she probably started showing symptoms out of it. Like when I was in college, when I was graduating college there’s things I look back on and I’m like, that was definitely it back then..
You had so many good information there, caregivers, so many times people think only the memories impacted by Alzheimer’s, but it is the whole brain and it is brain damage. And so there’s different areas in each person that are impacted in different ways. I can totally relate to the visual impairment. I did not get that at all as part of my mom’s progression of her disease. And like you said, she was having accidents or troubled judging while she was still driving well, before we realized there were issues going on. And so I think it’s so important to realize that a lot of these things are impacted and educating people to realize that, Alzheimer’s, isn’t normal aging. It is definitely an issue with the brain and it’s something to be aware of. So it could be happening to the person you’re caring for. It might be happening to you. So being aware, I think is so important with the signs and symptoms. So tell me, what would you say the biggest lesson that you learned from being a caregiver is.
So many different lessons over the years, my mom lived with the disease for 10 years and I was a caregiver off and on for periods during that time. And I learned so many things from that. And one thing specific to her having Alzheimer’s was just the beginning and the diagnosis felt like a death to me. And it felt like this is it, this is the end of our relationship. And it’s over now. And I felt really sorry for myself. I felt like, you know, I had no chance of having any kind of a relationship or anything with my mom or making memories with her, but what I learned was that our relationship would never look the way that I thought that it would, it wasn’t going to be the relationship I had always pictured, but it would still be a beautiful and meaningful relationship. Once I started to take the focus off of myself and put the focus more on my mom and trying to make her happy and bring her joyful moments into her life. Then I really felt as though it brought us closer together and we shared just this incredible, beautiful bond that I don’t think we would have really had had she not had Alzheimer’s. My mom and I always got along and we were close and you know, everything like that, but we got closer Yeah the worst that, that her illness got and the more she declined, I felt like we actually got closer and I felt like we had this bond that, you know, nobody that I knew who had that kind of a bond with their mom. And it’s something you can’t really explain or describe unless you’ve experienced it yourself. And so I just sort of learned that, love knows no, no bounds. And even though she didn’t know who I was. She knew that she loved me and I loved her and we were still able to have this close, beautiful, loving relationship that we might not have had otherwise. And just sort of more of a general life lesson is just the importance of being mindful and living in the moment and being present because as you know, dealing with Alzheimer’s and caregiving, there’s so much uncertainty. There’s so much unknown. Everything’s unpredictable. I would never plan anything if it was too far in advance, I would no I don’t know yet. I’ll have to wait because there was just so much unknown and so much that was, that was not predictable that we couldn’t count on. And so it really teaches you that really have to live in the moment and the moment that you’re in and the day that you’re in because that’s all you have. You don’t know if there’s going to be tomorrow. And you don’t know what tomorrow’s going to look like if you make it to tomorrow, but you have right now, you have this moment right now and you should at least try to make it a good one.
much wisdom in that Oftentimes the diagnosis is an end to what we’ve known and we kind of focus on that grief and we miss for a period of time, what we can learn and how we can move forward. And so I think that’s such a wise thing to say, living in the moment really does make the difference of your stress level and just of that relationship that you create. Because if you’re not expecting them to be who they’ve always been in the past, then you can appreciate what you have right now. And that bond, like you said, is amazing whenever you really can focus on just their needs. And that was the one thing I know with my mom losing her verbal skills within three years of her diagnosis, she really didn’t talk except for to things that weren’t there and jibberish. And so, you know, she couldn’t tell me anything that she needed. And so it was a matter of learning to just really pay close attention to the non-verbals and to know them well. Like you said that this disease takes much from us, but at the same time, if we’re focused on what it’s giving us, it can really bless us as well. So why did you decide to start sharing your story and writing the book?
Well, it’s funny because initially when my mom was diagnosed, I didn’t tell anybody about it. I maybe like the day after she got diagnosed, I called my best friend at the time. And I told her, you know, my mom’s just been diagnosed. She has Alzheimer’s disease. And she said like, oh, my grandmother had that. And that just said to me, well, that’s your grandmother and it’s not your mom. And that’s a little bit different. I know it can be just as hard for people. The disease is heartbreaking no matter what, but the relationship typically between someone and their grandparents is totally different than with your mom or dad or the person that raised you. And also grandpa. Was in her like eighties or something? My mom was in her early sixties. I was in my mid twenties. So right away from that one conversation I learned, okay, no one’s going to understand what I’m going through. Nobody. My age is going to have any clue what I’m going through, what this is like. And they don’t know what to say. They don’t know how to respond to me. I don’t want to make them uncomfortable. I don’t want to bring everybody down. So I’m just not going to talk about it. And I really, I did not tell anybody after that conversation, of course my fiance at the time. He’s now my husband, of course he knew of course family knew. Some mutual friends, my sister had told them, but nobody knew in my life, my circle, my friends, my coworkers, nobody knew about it. And it tore me apart inside like that year of planning my wedding and not being able to talk about it and not being able to tell people and just, it was eating me up inside. And I just remember the day of my wedding, finally pulling the wedding planner aside and being like, my mom has Alzheimer’s, cause she was starting to, you know, act more different than she normally was. And I was embarrassed by it and I was ashamed by it and I just started to feel this need to tell people what I was going through. And after keeping it inside for so long, I felt when I did pull that wedding planner aside to let her know, or when I did pull that coworker aside to let them know, I always felt better after having told someone. So fast forward like almost three years after my mom was dying. I was very unhappy with my job and I made the decision to quit and I was going to become a part-time caregiver for my mom. And that sort of coincided with this fundraiser that I was doing for the Alzheimer’s Association. And I needed to fundraise. So I decided to share my post on social media just on my personal Facebook page that I was doing this fundraiser, my mom had been diagnosed. And so then people knew that I was leaving my job and they knew why I was leaving my job. I got a lot of support from people. And people reached out to me saying my mom had Alzheimer’s and she passed away. And this and people that I never knew because no one talked about it. So I started to realize kind of the power in sharing my story and hearing other people, sharing their stories and us just connecting over this shared bond that we have of a parent having this disease. So in 2014, I decided to take it a step farther and write a blog. I had always been a writer. I just didn’t really have anything to write about. And so I had something to write about and people kept telling me that I should share my story. I should write. So I started my blog. People would read that and they were like, you should write a book. Like you have to tell your whole, the whole story. And so I just was like, okay, so. Sat down and wrote my first book. And it just continued from there. And the amount of people that I connected with who were my age that were going through it, who were younger than me, that were going through it. It was crazy to me that this many other people were going through what I was going through. And none of us knew about it because nobody was talking about it. And the more that I shared my story and the more people I connected with, and I felt better because I was processing what I was going through. I was writing it down. I was getting it out. It was therapeutic for me, and it was also helping other people. And we were connecting with each other and realizing we’re not alone. And so it just, you know, was so beneficial for so many reasons that I just kept doing it. And growing my blog and my social media pages, which eventually led to my second book that I wrote this year. And just keep going from there because, you know, we all feel so alone in this, but we’re not, we’re not alone. And the more that we share our stories and talk about it, then the more we realize that we’re not alone.
I love that it is amazing the power that, that gives us just knowing someone else’s journey through it. And nobody’s journey is exactly alike, but it definitely makes you feel less crazy when you’re experiencing the craziness that the disease brings, whether it be the grief that you experienced from life, not being what you thought it would be to those big events in life the first person you want to talk to. Isn’t going to get it, you know, just, we relate to that. We we’ve been there and we know what that’s like, and there is just comfort in that. And I think it’s amazing. I love your writing style. I love just how honest you are and how easy it is to read as far as for people in social media, just that quick read that really hits deep in the heart. So if you haven’t checked out Lauren stuff yet, and we definitely want you to do that. So I know that that’s been kind of led you to mentoring. So tell us a little bit about what you’re doing in that realm.
Yeah, with the posting on social media, a lot of people would resonate with what I wrote and they would comment and message and reach out to me. And a lot of times they would say, I wish we could talk in real life. I wish we could be friends in real life, or I wish I had someone like you in my real life. And enough people saying that kind of sparked this idea in my head that why not make myself available to talk to some of these fellow Alzheimer’s daughters that are going through this, that I have 10 years of experience in dealing with this disease. I’m not an expert in anything, but I’m an expert in loving someone who has Alzheimer’s disease. And I get it. And I know what it’s like. And I know how hard that is to find someone who understands what you’re going through. When my mom was diagnosed, like I had said, I didn’t know anybody and I didn’t have anyone to talk to. And it was incredibly isolating and incredibly difficult. And I would have loved to have someone to reach out, to, to be able to get on a call with them and just say, Then and talk about how I was feeling. And so I just wanted to make that available to other women who specifically younger women who have a parent that have been diagnosed with Alzheimer’s. I don’t know what it’s like to be the spouse of someone who has the disease. I know my experience, which is being. from the age of 25 to 35 years old, my mom had this disease and I was there for it all and I helped care for her and I’ve pretty much been through it all. And so I have that expertise in that area to be able to comfort other people who are going through it and kind of talk to them about what I know now, after it’s been about 18 months since my mom passed and I’ve done a lot of reflecting and processing and I write about it for a living. So. I’ve really thought about my journey and what I’ve learned and what I would want other people to know. And so just to be able to share that with them, to maybe help make this a little bit easier for them, but at least just so that they don’t feel so alone. And so I offer mentoring sessions done virtually over zoom. I do one-on-one sessions and I do group sessions as well. Some people prefer to talk one-on-one and some people really want that group because it shows you how many other people are dealing with what you’re dealing with. And they’re going through it too. You just don’t know them yet.
I love that you don’t know them yet. We’re all out there and we’re here to support and that’s what the heart is, is just to come alongside and help the journey be less lonely because we can’t change the journey. We can’t fix their problem. I always tell my clients, I wish I had a magic wand that I could just make this easier, but that’s not what we can do, but we can just come alongside. So I love that Lauren. And again, you need to connect with Lauren on social media listeners. So share with them the best way to connect with you and where they can find your books.
Sure. I’m on Facebook and Instagram at Life Love and Alzheimer’s my blog website where I’m mentoring all the information is LifeLoveandAlzheimer’s.Com. And then both of my books are available on Amazon and all that information is there on my website, on my social media, you can find all of that there.
Well, thank you so much for taking your time today. And I really appreciate your just honest pouring out of your heart. I think it does make such a difference for those that are walking this and feeling alone, that connection that they’re able to make with you. So listeners, I really encourage you to connect with Lauren and just be able to learn from her experience. Thanks again for being here.
Thank you so much.
Just to remind our listeners A Seasonal Caring Podcast was created for the encouragement of family caregivers. If you have financial, legal or medical questions, please consult your local professionals and take heart in your season of caring.
Writer and Author
Lauren Dykovitz is a writer and author, who lives in New Jersey with her husband and two black labs. Lauren’s 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 the age of 258.
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 2022. Lauren started offering online mentoring services for Alzheimer’s daughters in 2021. She is also a contributor or AlzheimersDiseasenet and a member of AlzAuthors.
Although her mom passed in April of 2020, it is Lauren’s mission to help others on their journey by sharing stories and lessons from her personal experience. In many ways, she feels like she is just getting started!
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Meet Your Host
Rayna Neises, ACC
Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected