Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s
We interviewed Lauren Dykovitz, a former caregiver for her mom with Alzheimer's. This is her story.
My mom was diagnosed with early-onset Alzheimer’s disease in July 2010 at the age of 62. I was 25 years old at the time and had just gotten engaged in the same month. Planning my wedding was the first thing I had to do without my mom. I struggled a lot during that first year because I felt like none of my peers could ever understand or appreciate what I was going through. I did not know anyone my age who had a parent with Alzheimer’s or dementia. I kept everything bottled up inside because I did not think anyone would understand.
Quitting my full-time job to become a caregiver
In April 2013, at the age of 28, I quit my full-time job as a police officer and became a part-time caregiver for my mom, while my dad continued working full-time. I struggled with feeling ashamed and embarrassed for not having a “real” job. I also struggled with being there every day to witness my mom’s decline.
In August 2014, my husband and I temporarily moved away while he attended flight school. I continued to be as involved in my mom’s care as I could be from a distance. In January 2016, we moved back home, and I became a part-time caregiver again. This role consumed me. Even when I was not with my mom, I was thinking about her and my dad constantly. By the end of the year, I was ready to have a nervous breakdown.
I vividly remember standing at the end of my parents’ driveway, sobbing uncontrollably, 2 days before Christmas that year. After the holidays, my sister and I made arrangements to talk to our dad about hiring in-home help. My dad reluctantly agreed, but eventually, he saw it as a huge relief. I transitioned from being my mom’s caregiver to being her daughter again.
My mom's final stages of Alzheimer's
In March 2018, my husband and I once again moved for his career. I flew home every 2 or 3 months to visit my mom, but I never fully adjusted to being so far away from her, especially since she began home hospice care in July 2019. Fortunately, my husband was able to find a job closer to home, and we moved back around Christmas 2019.
Shortly after moving home, my mom entered the final stages of Alzheimer’s. I sat at her bedside nearly every day. She passed away from the end stages of Alzheimer’s on April 4, 2020. My dad was her full-time caregiver, and we had several home health aides who helped care for her.
Sharing my story
When my mom was diagnosed with Alzheimer’s, I was only 25 years old. I did not know anyone my age who had a parent with Alzheimer’s or dementia. I began searching online for more information, but at the time, the Alzheimer’s Association was really the only resource I found. I was looking for something different, something more personal. I desperately wanted to find someone who could relate to what I was going through.
Starting a blog
About 4 years into my mom’s diagnosis, I still had not found what I was looking for, so I decided to create it for myself. I started a blog and began sharing my story. At first, it was mostly friends and family who read my blog. Then, I began sharing my blog posts with members of various support groups on Facebook.
The more I shared my story, the less alone I felt. It was very therapeutic for me to write about my experience, and I felt like I was really helping others, as well. I became the personal story about Alzheimer’s I was so desperately looking for when my mom was first diagnosed. I became the person I needed when I was younger.
Deciding to write a book
Shortly after I began sharing my blog with friends and family, people began encouraging me to write a book about my experience. At the time, I was living in Alabama while my husband attended flight school day and night. Truthfully, I had nothing else to do with my time, so I began writing my book. I finished writing my book and self-published it after we had moved back home.
I wrote my book for the same reasons I started sharing my story on my blog and social media. I wanted to connect with other young girls who had a parent diagnosed with Alzheimer’s disease. I wanted to be for them who I needed when I was younger. I wanted to help other young girls feel less alone on an already isolating journey. I also wanted to raise awareness about early-onset Alzheimer’s disease, including the fact that Alzheimer’s is not just an “old” person’s disease.
How my life changed as a caregiver
I essentially put my entire life on hold when I became my mom’s caregiver. When I quit my full-time job in 2013, I never planned on being out of work for so long. I have always struggled with feeling disconnected from many of my peers because my life path has been so different from theirs. I began taking care of my mom when most women my age were either excelling in their careers or having babies and raising children. I was not doing any of that.
While society often accepts the fact that many women take a break in their careers to raise their children, no one really understands when a 28-year-old woman takes a break in her career to care for her mom. Over the years, I have come to accept that the timeline of my life looks different from most of my peers, but that does not mean my success will be any less. It may come later in life for me, but it will come nonetheless.
My friendships and relationships drastically changed when I became a caregiver. My friends and I no longer had anything in common. I felt as though I had nothing to talk to them about anymore. While they were still building their careers and having fun, I was at home feeding my mom and helping her use the bathroom.
I remember many occasions when I would be out to dinner with a group of friends, listening to them talk about their jobs, and I would just think to myself, “Well, I spent the day prying used toilet paper out of my mom’s hands so she would not stuff it in her pockets.” I felt like I could not relate to any of my friends or any of their problems.
One of my favorite posts I have ever written is called “I See You, Alzheimer’s Daughter,” and it perfectly describes all of the ways my life was different when I became a caregiver.
My advice to other caregivers
When my mom was first diagnosed, I looked at it as a life sentence. There were no treatments, no cure, and nothing we could really do to help her. I felt lost, hopeless, depressed, and completely alone. Over my mom’s 10-year battle with Alzheimer’s, I learned that while I could not change the outcome of the disease, I could change the journey for her. While I could not fix her, I could at least try to make her happy. I spent the last 7 years of her life just trying to make her smile, and I am happy to say she smiled a lot.
An Alzheimer’s diagnosis is often seen as the end of a relationship, but I want people to know that it can be the beginning of a new relationship with your loved one. I felt closer to my mom when she no longer knew who I was because I realized she still knew me. Maybe she forgot my face or my name, but she knew my heart and soul. We had an unbreakable bond that no longer required recognition or communication. Alzheimer’s is brutal and devastating, but it can be beautiful, too. You can still have a beautiful and meaningful relationship with your loved one.
You are going to make mistakes. You are going to do and say things that you wish you did not. You are going to lose your patience, and even your mind, some days. It is okay. Just learn from it and move on. Take the good with the bad. The bad makes the good that much better. The bad is what helps you grow as a person and makes you a better caregiver. Embrace your role in your loved one’s life.
Embrace this journey. Find the joy in every situation. Look for it. Actively seek it out. It is there. If you cannot find the joy, then be it. Create moments of joy for your loved one. Some days, it will be a challenge. That is okay. This challenge is changing you. It is making you stronger. Let it.
Helping other caregivers
Although my mom is gone, I plan to continue sharing my story. There are so many people out there whose journeys are only just beginning, and I want to help them by sharing my experience. I also share a lot about my grief and the process of rediscovering myself after Alzheimer’s.
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