By: Lauren Dykovitz
My mom was diagnosed with Early Onset Alzheimer’s Disease in July 2010 at the age of 62. I was 25 years old and newly engaged at the time. While I should have been happy and excited to be planning my wedding, I wasn’t. I felt sad, depressed, angry, and alone. I didn’t know anyone my age who had a parent suffering from Alzheimer’s disease. I felt really sorry for myself. I felt like no one understood what I was going through, so I didn’t talk about my mom’s disease to anyone. I kept everything bottled up inside.
Working as a police officer at the time, I often struggled with the fact that my job was to help people, but I couldn’t help the two people who needed my help the most: my mom and dad. I worked alternating shifts, nights, weekends, and holidays. I felt like I never had enough time on my days off to visit my mom or to help take care of her. I was miserable. Ultimately, I made the decision to quit my job and I became a part-time caregiver for my mom, allowing my dad to continue working full-time.
I had never intended on becoming my mom’s caregiver, but I’m so glad that it turned out that way. The time that I was able to spend with her and the lessons I learned during those years are invaluable. I am not an expert on Alzheimer’s disease, but I became an expert on my mom. I learned what worked and what didn’t work for her. I learned what she could and couldn’t do. I began to try to solve the Alzheimer’s puzzle, each and every day I spent with her. There were so many days that I felt completely defeated, but there were also days when I felt like I had won. I learned that I was able to create moments of joy for my mom, in spite of the progression of her Alzheimer’s.
I had never intended on becoming my mom’s caregiver, but I’m so glad that it turned out that way.
I have been every kind of caregiver. I have been the almost non-existent caregiver because I was too busy with work and my own life. I have been the ever-present caregiver, who gave up most of my own life in order to be there to help out. I have been the part-time caregiver, who did what I could when I could. And, I have been the long-distance caregiver when I moved away to support my husband’s career. Now that we have full-time in-home care for my mom, I get to be the daughter again. I can’t tell you how grateful I am for that.
Dealing with my mom’s Alzheimer’s over the last nine years has taught me many lessons. I have learned that you should never complain too much about what you’re going through right now because someday you will be begging to have what you have now. You have to learn to appreciate what you have, while you have it, because some day it will be gone forever and you won’t even have a chance to say goodbye. You never know when the last time will be the last time.
I have learned that you should do what you can, when you can, with what you have. There is no perfect way to be a caregiver. All you need to do is show up and give as much love and patience as you have that day. It doesn’t even matter if you’re far away. There are still ways that you can care for your loved one. Call her, Facetime with her, send her flowers, check in with whoever is taking care of her. Just do what you can. It doesn’t always have to be something big. It’s all about the little things.
I have learned that you shouldn’t beat yourself up over every little thing. You are going to make mistakes. You’re going to do and say things that you wish you didn’t. You’re going to lose your patience, and even your mind, some days. It’s ok. 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’s there. If you can’t find the joy, then be it. Create moments of joy for your loved one. It will be a challenge some days. That’s ok. This challenge is changing you. It’s making you stronger. Let it. You will become the person you are meant to be.
And lastly, I’ve learned that just because your loved one doesn’t know who you are, doesn’t mean that she doesn’t know you. My mom doesn’t know that I’m her daughter, Lauren, but she knows me. She knows my heart and my soul and my love for her. She knows my voice and my touch and my presence. She knows I love her and she loves me. She knows she’s safe with me. My mom knows me on another level. Our bond is undeniable and unbreakable. What we have is so much more important than her knowing my name.
Don’t get me wrong – Alzheimer’s sucks. But with the right perspective, it can be beautiful, too.
Lauren Dykovitz is a writer and author. She lives in Florida with her husband and two black labs. Her mom, Jerie, was diagnosed with Alzheimer’s disease in 2010 at age 62. Lauren was only 25 years old at the time. Jerie is still living with late-stage Alzheimer’s.
Lauren writes about her experience on her blog, Life, Love, and Alzheimer’s. She has also been a contributing writer for several other blogs and websites. Lauren self-published her first book, Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s. She is also a member of AlzAuthors, a group of authors who have written books about Alzheimer’s and dementia.
Please visit lifeloveandalzheimers.com to read more about Lauren’s journey.
We would love to hear your story! If you are a caregiver or know someone who is, and you want to write a piece about them, please submit your article to be featured on our site throughout the series. Send your story to firstname.lastname@example.org.