My Biggest Fear

women-shadow-abandoned-building-summer-red-blue Photo: Rachel Mandel

For a long time, if someone asked me my biggest fear I would have told them the giant centipedes (lobster-pedes as I call them) that haunted my first apartment. I actually had nightmares and needed to crawl into bed with my roommate on more than one occasion. Then, in the Spring, some of the Obvi Ladies wrote about their greatest fears and it got me thinking about what my true greatest fear is. Around the same time, my Papa’s health took a turn for the worse as his 14-year battle with a disease called Primary Progressive Aphasia, (PPA) came to an end and he passed away in March.

PPA is a rare neurological syndrome that makes it difficult for your brain to transform thoughts into speech. As the disease progresses, you lose your ability to speak entirely, your body’s mobility becomes increasingly impaired, and you lose your mind to dementia. PPA is a form of dementia related to Alzheimer’s disease, which my Papa’s sister and possibly his mother suffered from. From my Papa’s autopsy results we recently learned that he also suffered from Alzheimer’s disease in addition to PPA. Both Alzheimer’s and PPA may or may not be hereditary, depending on specific genes. Knowing that these diseases run in my Mom’s family doesn’t just scare me, it makes my stomach sick.

Over the last three years as my Papa’s condition worsened, my Mom and her siblings stepped up to help their Mom take care of my Papa, their dad. I was there when my Mom retired early so she could stay home to help take care of, and to make the most of her time left with, her father. I watched my Mom cry tears of joy on the good days and tears of sadness on the bad days.

There were days when my Papa didn’t recognize his own children or seemed to be mad at them for no apparent reason, but my Mom never left his side. I told her, “I would do the same for you,” but then I realized, I hope and pray that I never have to. I realized my deepest, most heart-wrenching, pit-in-my-stomach, cry-as-I’m-typing-this fear in life, is to watch my Mom suffer from PPA or Alzheimer’s disease. I never want to watch another loved one lose their mind to dementia again.

Sometimes I joke that I’m mad at my Mom because she didn’t have me until she was 38 years old, whereas she had my brother when she was 30. I joke that I’m jealous that my brother will always have 8 more memorable years with her than I will. I’m not really joking though. My Mom is my closest friend and I cherish my relationship with her more than ever. I love her and I like her as a Mom and as a friend. I look so forward to the years of friendship we have ahead of us.

The idea that a disease like Alzheimer’s or PPA could cut our time short terrifies me. I used to make jokes about how “spacey” my Mom was, and thought it was funny when she looked for her glasses all over the house only find them on top of her head. I don’t find those jokes funny anymore because I fear that those incidents aren’t meaningless. My Mom tells me I’m wasting my energy worrying about something that hasn’t happened yet and reminds me that she drinks red wine and does her Sudoku puzzles every night to keep her mind “Tarp as a Shack.” She also reminds me that it’s normal to misplace glasses and that until she puts her keys in the fridge, I shouldn’t worry, but I do. In my old age (JK, but I am almost 24) I’ve become painfully aware of how fleeting time is. I find myself constantly doing calculations like, how long do my parents have to live if they’re ever going to see their unborn grandchildren graduate middle school. Clearly, I’m very good at worrying about things that haven’t happened yet, but my Mom is in her 60’s, the decade in a woman’s life when most women are diagnosed with Alzheimer’s.   

Most of my personal research has been about Alzheimer’s disease as opposed to PPA. That is because PPA is more likely to affect men, whereas 65% of people diagnosed with Alzheimer’s are women. Interestingly, the main reason that Alzheimer’s disproportionately affects women is because the chances of being diagnosed increases with age, and women have longer life-expectancy. Having family history of Alzheimer’s (which we do) increases that risk even more.

Alzheimer’s is the 6th leading cause of death in the U.S. and it is the only cause of death among the top 10 that is still on the rise and without a way to prevent, cure, or even slow its progression. It is the most expensive disease in America, with 60% of its costs paid for by Medicare, and yet the research to prevent or treat the disease is severely underfunded.  Here’s a statistic that I can relate to: In 2014, friends and family of people with Alzheimer’s and other dementias provided an estimated 18.1 BILLION hours of unpaid care. 

As much as I love Julianne Moore, I’ve never been able to watch her Oscar-winning performance in Still Alice because a movie about a mother and daughter in which the mother gets Alzheimer’s sounds like it would destroy me and give me anxiety for the rest of my life.

I am incredibly aware that if my Mom is going to be diagnosed with Alzheimer’s or PPA, that there is absolutely nothing I can do about it right now. I want to enjoy every moment I have with my Mom and I’m going to make a better effort to not worry about the things I can’t change. Because, God forbid she is ever diagnosed with such a cruel disease, I promise I will not have one regret from our time together now. For now, though, I’m going to try to divert my anxious fears back to the lobster-pedes and let those be what keeps me up at night.

*If you are interested in learning more about the disease or how you can help, I recommend checking out actors Seth and Lauren Rogan’s charity, Hilarity for Charity, here. Learn more, donate, or contact your state representatives about funding research here.