A Caregiver Shares Her Experiences

Lauren Dykovitz is a writer and author. Her mom, Jerie, was diagnosed with Alzheimer’s disease in 2010 at age 62. Lauren self-published her first book, Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s. She writes about her experience on her blog, Life, Love, and Alzheimer’s.

Here is Giving Care Blog’s Q & A with Lauren where we learn more about her caregiving journey:

Tell us about yourself and your caregiver journey, how did it begin?

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 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 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.

I never intended on becoming my mom’s caregiver, but I am so glad that it turned out the 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. You can’t change the end result of this disease, but yon can improve the quality of life for your loved one living with it.

As a female caregiver what has been your biggest challenge?

My biggest challenge has been putting my life on hold and not being able to financially contribute to my own household. When I quit my full-time job almost seven years ago, 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 wasn’t doing any of that. While much of society accepts the fact that many women take a break in their careers to raise their children, no one really understands when a twenty-eight-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 doesn’t mean my success will be any less. It may come later in life for me, but it will come nonetheless.

Grief is a recurrent theme in your book Learning to Weather the Storm: A Story of Life, Love and Alzheimer’s. You talk about loss yet there is hope in your writing. How does one adapt to the constant pull of grief and hope?

Dealing with my mom’s Alzheimer’s for the last ten years has taught me many lessons. I have learned that you should never complain too much about what you’re going through right now. One day 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 have a chance to say goodbye. You never know when the last time will be the last time. There will always be grief and it’s important to acknowledge it, but there can also be joy and beauty along this journey. You don’t have to sit back and let this horrific disease destroy everything. Be relentless in your pursuit of making your loved one smile. Embrace those precious moments of joy and cherish those little nuggets of clarity. That’s what will carry you through to the end. It’s a long and difficult road. This disease is heartbreaking and you will grieve your loved one long before they are gone. This disease will knock you down, but somehow, you’ll always get back up. We are nothing if not resilient.

One thing that has really helped me on this journey is making gratitude lists. When I was living far away from my mom, I had to rely on Facetime calls with her and my dad, as my mom could no longer talk on the phone. I would hang up from those calls feeling so sad, depressed, and defeated. I dreaded Facetiming with my parents so much that I would just avoid doing it for as long as possible. I realized that sometimes I went months without seeing or talking to my mom. I decided to start making a gratitude list after every call because it would force me to focus on the good parts of the phone call so I would have things to put on my list. It totally changed my perspective and the way I looked at those calls. I started Facetiming with my parents more frequently and it helped me focus on gratitude in other aspects of this journey, as well. It taught me that grief and gratitude can coincide.

As a caregiver what are your views on adaptive/adaptable clothing (how did they make life easier for you or your mother)?

I think adaptive clothing can be very helpful in preserving someone’s dignity and independence. I did not discover adaptive clothing until very recently when I was looking for hospital gowns for my mom, who is bedridden. Most of the hospital gowns I found looked too much like a hospital gown to me. They were white with blue polka dots and the material was paper-thin. I wanted something with softer, thicker material, pretty colors, and feminine prints. I wanted my mom to look and feel beautiful. I wanted my mom to look like my mom, not a hospital patient. Just because someone spends their days sitting in a wheelchair or lying in a hospital bed doesn’t mean they don’t deserve to look their best.

I only wish we had discovered adaptive clothing sooner. It could have allowed my mom the dignity and independence of dressing herself without assistance for far longer.

Any advice or tips for other caregivers?

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.

About the Author:

Lauren Dykovitz is a writer and author. She lives in New Jersey 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 end-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.