“I was in the last hour of my ten-hour shift when my mom called me. She told me she had heard back from her neurologist that day.
‘I have Alzheimer’s.’
At my sister and my insistence our mom had been seeing a neurologist regarding some changes we had noticed in her. Not only was she forgetting things, but she was also forgetting how to do things she had done her whole life. She couldn’t remember words, names, basic information, and seemingly everything we told her. She had also become socially withdrawn, which was very out of character for my ‘Chatty Cathy’ of a mom. As I was moving into a new apartment she sat on the floor in the living room with her coat on, not helping me whatsoever and not talking to anyone. This was not her. She had also been having issues with her depth perception causing her to have movement troubles. All in all, we knew something was wrong and after months of convincing, she had finally begun to see a doctor.
Looking back, I can say I knew what was coming. I had this feeling in my gut. Still, I was not at all prepared for the words she spoke on the phone that day.
‘I have Alzheimer’s.’
I don’t even remember what I said in response. Although part of me knew this was coming, another part of me was in shock. Hearing those words left me speechless.
I went to my parents’ house that night. It felt as if we were meeting to grieve the loss of a loved one. Everyone was so sad and no one knew what to do next. I mean, there really wasn’t anything we could do. No funeral services to be planned. No eulogy to be written. No pictures to gather for a slideshow. There had not been a death. No surgeries to be scheduled. No treatments to begin. No fighting to commence. There are no surgeries or treatments to cure Alzheimer’s. There was nothing to schedule. Nothing to do. Except wait. Sit back and wait for this horrific disease to destroy her mind and our lives. Or so, that’s how it felt at the time. No one knew what to do or say that night.
My mom was only 62 when she was diagnosed. I was 25 and had just gotten engaged that same month. I remember calling my best friend to tell her about my mom’s diagnosis. She told me her grandmother had died of Alzheimer’s. Her grandmother. Not her mother. That’s when I realized I didn’t know anyone my age who had had a parent with Alzheimer’s. I felt completely alone. I further isolated myself by not talking about my mom’s diagnosis to anyone because I was convinced no one could possibly understand what I was going through.
The next several years were tough, to say the least. For the first three years following my mom’s diagnosis, I didn’t cope with it at all. I just cried a lot. I bottled everything up inside me until I had enough and then I would just break down. Eventually, I began sharing my story and I realized pain is often lessened when shared with others. The support of others empowered me to finally accept my mom’s Alzheimer’s and begin to find new ways to connect with her. I began to look for the joy in spite of the ugliness of the disease. But that doesn’t mean it wasn’t difficult.
I’ll never forget the first time my mom looked at me and didn’t know who I was.
It was a few years after my mom’s diagnosis. The mall was ridiculously crowded that day, the way it usually is around Christmas time. We navigated our way through the food court and my mom saved us a table in front of Saladworks. I could see her sitting there as I stood in line, waiting impatiently and looking annoyed by all of the people.
Finally, I got our salads and drinks and walked back to where my mom had been sitting. As I approached the table and began putting my stuff down, she looked up at me and politely said, ‘I’m sorry, but someone is sitting here.’ I just stared back at her, completely stunned by what she had just said. I replied, ‘Yeah, I know. I’m sitting here.’ She looked confused and laughed nervously for a second. She said again, ‘Oh, I’m sorry. Someone is sitting here.’
My heart began to race as I quickly tried to process what was happening. The chatter and buzz all around me continued on as if nothing was wrong, but for me, the whole world had stopped moving. Everything stood still. I was frozen in place, solely focused on this one woman sitting in front of me. Eventually, I was able to formulate a response. I said, ‘Yeah, Mom, I know. I’m sitting here. Mom, it’s me. Lauren.’
My mom looked even more confused and her cheeks became red with embarrassment. She quickly realized her mistake and tried to play it off as she continued laughing nervously. But I knew she figured out what had just happened. I knew she also felt the significance of that moment. I introduced myself to my mom that day. It may have been the first time, but it definitely wasn’t the last.
There were many other ‘first times’ in the years that followed. There was the first time she forgot how to get dressed. The first time she got lost in her own house and had to call me for help. The first time I helped her use the bathroom because she had completely forgotten what to do. There was the first time she forgot how to answer the phone and held it up to her ear upside down. The first time I said, ‘I love you,’ and she didn’t say it back. The first time she got mad and yelled at me to get out of her house. There was the first time I helped her up after she had fallen down. The first time I pushed her in a wheelchair. The first time I fed her with a spoon.
I’ve always had the support of my dad, my sister, my husband, and other family members. We’ve all worked together to care for my mom and I know I’m very fortunate to have their support. Still, witnessing my mom’s decline and losing a little bit more of her each day has been so painful. With each new loss comes new grief, which is often accompanied by regret. One of my biggest regrets is never talking to my mom about her disease when I had the chance. And she never brought it up herself. I don’t know how she felt about it, if she knew what was happening to her, if she was scared. Truthfully, I don’t think it would have helped me to know how she felt at the time. I just wish I had been there for her more in the beginning.
That day at the mall was just the beginning of a long, heartbreaking journey. I lost so much more of my mom as the years went on. The thing about Alzheimer’s is you lose so much of the person along the way that by the end, you are practically begging for them to die. But at the same time, you dread the thought of it. For years and years, you are mourning for someone who is still alive. It consumes every part of you. You are sad for no reason at all. The most random things make you cry. You put so much of your life on hold not only to care for your loved one, but also because you feel like you can’t possibly move on and continue to live your own life while your loved one is slowly dying.
It has been over nine years since my mom was diagnosed with Alzheimer’s. She is still living and was just approved for hospice a few months ago. This journey has taught me so much. I have learned more about patience, compassion, strength, and unconditional love in the last nine years than I have in my whole life. It would be impossible to list all of the things I’ve learned here, so I’ll just share the two big ones.
One, there can 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.
And two, even if your loved one doesn’t know who you are, they still know you. Your loved one knows your heart and your soul and your love. Your loved one knows your voice and your presence. Your loved one might not know your name or your relation, but they know you on another level. Your bond is unbreakable and undeniable. What you have is so much more important than your loved one knowing your name. What you have is unconditional love, both given and received.
My mom doesn’t know I’m her daughter, Lauren, but she smiles when I say her name. Every time I say, ‘Hey, Mom,’ she says, ‘What?’ I can still find a way to make her smile and laugh. Many people tell me I’m the only one who can do that. Even on a day when my mom says very little, she will randomly tell me she loves me. She often surprises me at the end of a visit when I say, ‘See ya later,’ and she says, ‘Alligator.’ You can’t tell me she’s not still in there. You can’t tell me she doesn’t know me.
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. This disease changes you, friends.
This story was submitted to Love What Matters by Lauren Dykovitz of Florida. Her mom, Jerie, was diagnosed with Alzheimer’s disease in 2010 at age 62. You can follow their journey on Instagram, Facebook and her website. Read more powerful stories from Lauren Dykovitz: Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s, and contributions at AlzAuthors. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories by Lauren Dykovitz here:
‘My dad had an appointment with a funeral home director. It feels like a betrayal.’: Dad goes funeral home shopping for wife dying of Alzheimer’s, daughter feels guilty, ‘It feels like I’ve given up on her’
‘I was scared of losing my mom. I was 12. I didn’t want anyone to think I was trying to get attention.’: Daughter suffers in silence after mom’s cancer, Alzheimer’s diagnoses, says ‘your struggle doesn’t make you weak’
Do you have a loved one with Alzheimer’s or dementia? Please SHARE on Facebook and Instagram to make them aware there is a community of support available.