My mom has dementia, but talking about it makes me feel less alone

The day I found out that my 58-year-old mother officially had dementia was Tuesday, January 17, 2012. My friend Michaela and I had a standing Pretty Little Liars date for Tuesdays, which this week also included a DVR’d Golden Globe Awards from two days prior. While Michaela was on her way to my house, my parents told me the news they received from the doctor that day. Dementia. Not a brain tumor, not something that could be cured with some pills and rest. Dementia. My mother, a former police captain and hostage negotiator, was slowly deteriorating in front of our eyes. Though we had suspected something was happening for nearly a year, the news still brought me to my knees.

That night, after I felt I had cried enough for a little while, Michaela and I started watching the Golden Globes. We fast-forwarded through a lot of it, but for some reason, I wanted to stop and watch Jodie Foster. You may remember her speech that year — it was powerful and heartfelt as she, very elegantly, came out. But that’s not what hit me the hardest. Jodie began to speak to her mother by saying, “Mom, I know you’re inside those blue eyes somewhere and that there are so many things that you won’t understand tonight, but this is the only important one to take in: I love you, I love you, I love you.”

The phrase “it took the wind right out of me” never had more meaning until that exact moment, hearing those words, and realizing that Jodie understood. She understood what it was like to look into her mother’s eyes and see a shell of what she used to be. To look in her blue eyes and wonder if she was still processing you. I also realized the long road my family had ahead of us. At this point, my mother was still mostly her normal self, with some speech and comprehension issues, but at least my family still had some semblance of normal.

The years since Jodie’s speech have gone by both quickly and slowly. I have experienced a range of emotions: from anger to sadness, disbelief to acceptance, rage to numbness. I’ve felt lonely and sorry for myself. I’ve wondered: Why is this happening to my mother? What did we do wrong to deserve this? Why am I 30, unmarried, childless, and why don’t I get to have my mother for 30+ more years? I’ve felt guilty for not spending more time with her. I’ve felt frustrated with her changing personality. I’ve felt happiness that the disease seems to be progressing slowly. I’ve felt fear for my father’s health as a caregiver.

I’ve wished she had any other disease, one that didn’t snatch her personality away. I’ve even wished worse. I’ve wished that I wrote down everything she’d ever said to me, recorded every piece of advice, and videotaped every happy memory I’ve ever had. I’ve forgotten a lot about her personality before the dementia started. What would mom say? has become a difficult question to answer for both me and my younger sister. I’ve felt guilt that I feel all of these emotions and wished all these wishes, because I still had more time with my “normal” mom than my baby sister did. I’ve prayed that one day I’ll wake up, and this all will have been a terrible nightmare.

It’s not common for young adults to have parents with dementia, but it is, scarily, becoming more prevalent. I found a great friend at grad school whose dad also has dementia, and despite how terrible it is that her family is also affected, having her as a friend is the best thing to happen to me during all of this. When I met Alix, I suddenly felt less alone. Someone besides my immediate family understands how wrecked I am by this disease. I can call up Alix, or run to her apartment, and she understands what it’s like to just “have a moment” when I’m slammed with grief. Some days are better than others. Some days you can forget that your life is no longer normal. Sometimes, however, you hear a song that reminds you of your parent, and you miss them so much you can’t breathe.

My mother is not the mother I grew up with because of this disease. I’m thankful everyday that she is still here with us, but I am still processing what it’s like to have a different mom. The mom I remember worked a lot, but man, was she a badass. She liked to take us shopping and drink Diet Coke from McDonald’s. She loved to dance in the car when our friends were riding along, solely to mortify us. She was stern, a true police officer, but everyone loved her. Loves her. Her smile could light up a room, and though she could be intimidating, she still cried when she saw someone else crying.

I don’t really have a universal solution for coping with this disease in someone you love. Everyone handles things differently, but I’ve learned that for me, one of the most important things is having other people to talk to who understand, even remotely, what you’re going through. It’s equally important to give yourself permission to feel any emotion you’re feeling. Lastly, it’s most important to remember that though the person you love is slipping away, they are still the person you love. As Jodie Foster said, her mother is still behind those blue eyes somewhere. I know my mother is as well, and I hold onto that tightly.

It took me nearly four years to write this piece about my mother, her battle with dementia, and my feelings regarding this terrible situation. I had a lot of excuses for not writing it — I was busy in grad school, I wasn’t sure exactly what to say (and didn’t want to say the wrong thing), my cat was sleeping on my keyboard — you know, the usual procrastination.

Truthfully, I was (am?) scared. I was (am, for sure) scared to put my raw feelings out there for the world to read them, to maybe judge me, but I recently remembered Seth Rogen’s powerful testimony to Congress about the need for funding for Alzheimer’s and dementia research. His wife Lauren Miller’s mother was diagnosed with early-onset Alzheimer’s, and he rallied behind her and with her though all of it. He said something that stood out to me then, and still does today:

“The third reason I’m here, simply, is to show people that they’re not alone. So few people share their personal stories, so few people have something to relate to. I know that if me and my wife saw someone like me talking about this, it would probably make us feel a little less alone.”

I hope that I can make even one person feel a little less alone by sharing my story. By someone like me talking about this terrible mind-robbing, personality-stealing disease. We shouldn’t have to be alone in our grief, our sadness, our anger, or even alone with our memories. I’m here for you. You’re not alone.

Angie Carrier is a UX designer by day, but a writer, reader, TV enthusiast, and champagne lover by night. Newly based in Los Angeles, she spends most of her time in her car singing along to the “Hamilton” soundtrack and learning what it’s like to live in a state without snow. Angie also posts way too many running, Disney, and cat photos on Instagram.