Until this past year, I didn't know how easy I had it.
I had known of people with dementia; the topic was familiar to me, as were trigonometric functions and taxes. I knew it existed, but I didn't understand the scope of what it meant because I was never really exposed to it.
When I was a toddler, my Great Aunt Mary passed away after years of battling Alzheimer's. I had met her once or twice, but I was too young to remember anything about her or her life in the nursing home or the way she acted when she interacted with my father, her nephew that she didn't recognize. I'm not even sure I know what she looked like. I knew she forgot things, but I was so naive about how it had affected my family. To me, she was nothing but a few stories.
My boyfriend lost his grandmother to Alzheimer's years before I met him. He told me a bit about how hard the end of her life was for his family, but nothing in detail. I filled in the holes with ideas I had about Alzheimer's: things I had seen on TV, like Grey's Anatomy with Meredith Grey and her estranged mother Ellis, or Allie from The Notebook. I thought about them, and how different their memories were, Ellis imagining she was a world-class surgeon again like when she was young, and Allie not remembering the people from her past but being content with her present. They were still glamorous. They just seemed a bit confused. Both of them had euphoric moments of clarity and lucidity. I imagined that that's what Alzheimer's was like.
But until this past October, I had not known someone who was diagnosed with dementia, so it was hard for me to comprehend how brutally it beats down the family and friends of the sick.
My mom called me up in between my classes. I remember it was sunny and warm and I was sitting at my desk with the window open so I could smell the dirt from outside. She called me and said that my Aunt Flora was in an assisted living facility because she had dementia. Flora has been my mother's best friend since they both moved to the United States in 1976. She's my sister's godmother, and a close family friend. My mom's news was shocking and new to me; I hadn't even known she had dementia, and now she was moved out of her home. My mother didn't know she was sick either, until Flora's brother called to tell her. Every time they talked on the phone, they gabbed about work and their parents and trivial things. She didn't realize that Flora was forgetting to go to work, or go to meetings and appointments, or buying things online and not remembering that she had already bought them until she was thousands of dollars in debt.
“But she can't have dementia! She's only 50!”
None of us had a clue.
My mother visits her at least every other week, but I first went to see her over Christmas break. Her signature red hair was brown, her rosy cheeks were taupe. The classiest, best-dressed, childless, most-fierce woman I had in my life was taupe.
She knew who I was, and she loved me. I felt her love for me in ways that I never had before. (I always assumed she preferred my sister because she was her goddaughter). But she wasn't entirely there. One minute, Flora would ask me about my boyfriend and if my parents liked him, the next, she would ask me about what colleges I wanted to tour. It would go back and forth. Her mind just seemed a little overwhelmed with the past few years. After 20 minutes, she was silent. It was as if she knew she was missing something, but she couldn't figure out what it was.
Last week, I saw her again for the second time since her diagnosis. In the 10 minutes I was with her, I prayed and prayed for the Christmas break Flora to come back. She had to be moved to a locked nursing home with 24/7 intense care. She recognized my face, but she had no idea who I was. She could not complete any sentences, because she forgot the words she wanted to say. Of course, she giggled with delight every time she saw my mother. She always recognizes my mother.
Mom and I spent weeks on eBay buying old CD's of Flora's favorite tunes from the '80s, in hopes she would remember them and be more comfortable in her home. When the Rocky theme song played, she got up and danced and hummed the tune. She kissed the top of my head, and I thought maybe the music was bringing her some clarity, like in The Notebook. But she sat down, and her face went blank. She called me by my mother's name when my mom went to the bathroom. When my mom got back, Flora didn't remember who she was, because she thought I was my mother. As we were leaving, she tried to come with us and cried when the nurses wouldn't let her go.
The Alzheimer's Association says that about five percent of Americans are diagnosed with early-onset dementia, like Flora was. Other statistics are scarier, like “every 66 seconds, someone is diagnosed with Alzheimer's.” On top of that, doctors do not know exactly how it happens, or how to fix it. Most of it is genetics.
But they are working towards learning more about the disease by having people take part in dementia studies, and hopefully, that will lead to a cure.
Before it hit my family, I didn't know how hard dementia is. I figured, it must be kind of rough sometimes to forget things. I figured at least they can converse with their loved ones .
But I was wrong. Dementia doesn't just take away your memories. It takes away your whole life. It takes away your humor, and your inside jokes, and your love, and your empathy. It leaves you with confusion and fear. And it leaves your family and friends with the burden of having to take care of someone who cannot remember them. And we take care of them because we love who they used to be, but it is so heartbreaking to watch a person wither away and not be able to tell them about your life or the things you do that will make them proud.
It's a thankless job.
For everyone out there whose lives are affected by dementia, I pray that one day, there is a surgery, or a medicine, or a robot brain, or something that eradicates these awful diseases. But for now, all we can do is remember for those who cannot remember us.
For ways to find out how you can help find the cure, check out https://www.alz.org/join_the_cause_join_the_cause.asp or https://www.endalznow.org/find-a-study
