Interesting conversations are a distant memory. Thankfully, mom still remembers me.
At 78, she woke up from hip surgery and her memory was shot. Her hip healed quickly. Her memory didn’t. Just like that, my mom had dementia and both of our realities changed.
I waited for my “with it” mom to return as dementia set in
She fell in front of Bloomingdales running around the city with her boyfriend. If mom had to fall, in front of Bloomingdale’s is better than most places. Taken by ambulance after her fall, her hip was replaced a few days later. My sister and I kept waiting for her to get back to the sharp, “with it ” mom we knew. The mom who always had the right words and didn’t miss a beat.
A mom who caught every clue and subtle innuendo all with an uncanny, almost psychic intuition. “It’s the pain medications,” we told each other. “It’s the shock to her system”. In fact, studies confirm that 35% of the elderly develop dementia after anesthesia. Mom was one of them.
It all happened as I was getting closer to 50, at the same time my estrogen levels were plummeting and my only daughter was racing towards adulthood. I was also navigating a 26-year old marriage that was reeling from life’s curveballs—which felt more like softballs—before mom fell.
Pre-fall mom was lucky and hadn’t needed medical care in a hospital since giving birth. She was successful at convincing people she was younger than her years because she didn’t look her age. “I’m 39” or “I’m 49” she would reply with a trophy-worthy poker face in her 60’s and beyond. Even her later-in-life boyfriend would declare, I want to have children with this woman with such passion it would make me question every relationship I’d had since I was 13.
That makes post-fall mom even harder to accept, because we were more like sisters than mother/daughter, despite an overlay of maternal concern. We were always on the phone. “Did you land okay? Did you get home okay? “What’s wrong? You sound funny.”
Texting, emailing was not even an option with mom even long after the technology was available. Years later, my sister and I still expect to have the same “she is the 3rd sibling” dynamic with mom.
Unlike so many others with dementia facing other medical problems, she still looks the same. The juxtaposition of her appearance and her mental capacity triggers a vertigo that is now a part of my daily routine.
Mom repeats herself now, over and over and over
The questions are gone. She repeats now. What she just did, what we just did, did we just eat? Repeat. Repeat. Repeat.
Mom used to make me feel safe, despite what many may consider too much involvement. Not me. I remember once, early in my marriage, she couldn’t “find” me while my husband was traveling. She tracked him down on a business trip with only one clue – “Texas.” “Where is Karen?” she asked, when, like Inspector Clouseau, she finally connected with him on a landline in the Lone Star State.
Mom, pre-fall, was smart. She accompanied her friends to their medical appointments and Harvard-educated doctors would run the other way. Mom would ask questions no one would think to ask. Now, nothing sticks.
A short while after her surgery, we noticed she would laugh a lot – a familiar yet foreign laugh I didn’t recognize. She always had a great sense of humor, but this laugh shook me to my core. It was different, unsettling. “She has dementia associated with trauma, often associated with a hip break,” said Doctor #10 explaining this symptom. Multiple doctor appointments, and lots of Googling-on-steroids solved the mystery: Pseudobulbar affect. Inappropriate laughter, emotional incontinence often associated with a neurological condition or brain injury.
About the time mom was forgetting more and more, David Cassidy was in the news disclosing he had dementia. I felt like I knew him in a “my sister had his teen heart-throb poster on her wall,” way. Even Keith Partridge can get dementia I thought, seeing visions of him singing I Think I Love You as a pre-teen girl.
For a while I was obsessed with other famous people who had the disease: Rosa Parks, Rita Hayworth, and that guy Casey Kasem, from the radio who I listened to driving back to college. Even former presidents, like Ronald Reagan were not safe. He worked in a time when everything, including politics still made sense, just like pre-fall mom.
You have to accept the new normal
“You have to figure out your new normal. You have to accept it,” my close friends said.
I refuse to accept it. As I try to navigate this new normal I question the meaning of memories: What is a life if you can’t remember it?
Memories aren’t made on social media. There are memories pre-Instagram and pre-Facebook, even if you don’t remember them one day. They matter because they happened. Endless boxes of actual, “hold-in-your-hand” photos from my recently sold, childhood home of 40 years confirms this. I believe even if you forget what you did or said, memories are still worth making.
Mom was my anchor. Her constant presence in my life made me stronger too.
She attracts friends with her contagious energy at the memory care facility where she lives. Even with dementia, I think she makes others feel safer and happier. She still loves to dance and she still loves Frank Sinatra.
Last week I showed her photos of my daughter and her other granddaughter who are now in the their first few weeks of freshman year at college. She lights up when she sees them. My daughter is still her “honey bun” and she still finds my funny niece amusing. She says, “I love you” a lot to us, and, to everyone. Then she forgets we were together seconds after we leave. “Get away,” she says to the aide trying to help her. She knows when a stranger is hovering over her too much, not giving her space. Within seconds though, she is kissing her.
I am starting a new chapter in my life
I am starting to finally begin a new chapter with mom as I text and FaceTime my daughter hundreds of miles away. I ask the same questions mom once asked of me on an answering machine when I was in college, or as Sharpie-scribbled messages written by my roommates on our dorm white board. The messages reinforced she was there. I leave similar messages for my daughter via text or on FaceTime. Are you okay? Did you eat enough? Do you need anything? I can’t help it. I guess I’m just like mom.
Keep laughing mom. Laugh at the staff when they set up a boring group activity. Laugh at me when I make a “crinkly, midlife face”when you ask how I am doing. Laugh at a photo of your granddaughterwearing a too-revealing outfit at college. I know somewhere inside, you still just get it. I am starting to find my laugh again also, especially when I catch you on occasion giving that familiar eye-roll to someone.
Most of all, I am finding my laugh again because I know you would want me to. It’s time to move on and build my empty nest, even if it’s just one twig at a time. I love you mom, now let’s go dance so maybe we can both forget everything just for a little while.
I’ll never forget you…even if, one day, you forget me.
Editorial Update: Like many others, my mom was diagnosed with COVID-19 last month. She is hopefully on a long road to recovery but, as is unfortunately common with dementia, any illness advances this unrelenting disease. I hope she still knows who I am and still lights up when she finally sees her grandchildren again.
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Karen Amster-Young lives in New York City and is currently quarantined like the rest of the world. A seasoned communications professional, Karen often helps non-profits and loves building brands. As a contributing writer, Karen’s interviews with newsmakers and her personal essays have appeared in numerous media outlets. Her book, The 52 Weeks was published in 2014 (Skyhorse) and was inspired by the rants and raves on her blog at the time. This month she created a spreadsheet to track her essentials on Amazon and various other shopping platforms.