[I realized recently that most of my posts follow a particular, positive format. In each one, I move from uneducated to educated. Unenlightened to enlightened. Sad to happy. Mournful to hopeful. But not all of life can be a lesson. And not all of life has a happy ending. This post is one that I’ve wanted to write for a long time, but couldn’t, because it isn’t just about me. After three years of waiting, as a family we have decided it’s time to share this story].
My earliest memory of my mom was of forgetting who she was. I was standing at the top of the slide during preschool, watching as mom after mom came to pick up their children. They were all sleek and blonde, young and beautiful. Is that what a mom is supposed to be? I wondered. Is one of these people my mom? For one, dizzying, minute I couldn’t remember who my mom was.
And then she arrived–short, scruffy, freckly, her eyebrows unplucked, her smile crooked–so very different from all the other beautiful moms–and I felt this rush of sheer pleasure. That was my mom. And god, she was so much better than I’d imagined. She was real.
I zipped down the slide and ran to push my skull into her stomach. To bask in the warmth of being her daughter.
I basked in that warmth for a glorious 24 years.
You can’t fully understand without knowing my mom. She was the kind of person that you wanted to curl up next to on the couch. Or go on a long car ride with. I remember my aunts–from both sides of the family–calling her up for long conversations about life on a daily basis. Her employees stopping in to her office just to share a funny anecdote with her.
She had this infectious laugh. When we went on family vacations with my mom’s side of the family, she’d lead the entire family in group pilates while we waited in the airport–solemn faced until she couldn’t stand it any more, and then she’d bust out laughing with her ridiculous hee-haw of a laugh and we’d all laugh too, and collapse in piles on the ground.
Once I dared her to do a cartwheel in a convenience store–we were always daring each other to do ridiculous things–and without a second thought, she did it. We were both so surprised that she’d actually done it that we burst out laughing–and staggered up to the cash register, our arms linked and cheeks flushed.
She slept with famous baseball coaches. She got her hair cut like a boy. She had been proposed to once before my dad asked, and had said no. She had worked in a group home for adults with disabilities when she graduated from college, and told stories about the adventures she took them on–how one guy had pooped in a display toilet at Home Depot. Or how another had puked into a bag of popcorn during a drive-in movie, and one of her other wards had eaten it.
Even my friends were enveloped by her warmth. I remember one of my childhood friends running away from home after her dad scared her, right into my mom’s arms. The way my mom pulled her in close and said, “Oh, hon.” And told her that she didn’t need to go home.
She was a defender. A protector. She fought injustice on both the small and large scale–writing multimillion dollar grants for the preschoolers of New Jersey, pooping on the golf course lawn after they refused to let Jews join, calling the superintendent after my 8th grade math teacher picked on one of the boys in my class for stuttering.
She was amazing. So amazing, that as a kid I felt terrified of losing her. I’d lie in bed and think about heartbreaking scenarios. What would I do if someone pointed a gun at us and told me I had to choose one of us to die? Would I sacrifice myself or her? I thought about her face, crumpled with fear, and sobbed myself to sleep. Every morning when she walked out the door, I whispered, “I love you, watch out for crazies,” like it was a mantra against evil.
I don’t know when the mantra stopped working. It was so gradual that it was imperceptible. Maybe it was because I was always on the lookout for other people who might harm her–I never thought to include her own brain in the list of things to worry about.
My first clue that something was wrong was during my senior year of college. I was walking to the dining hall–an activity that I always called her during–and she seemed absent on the phone.
“Are you okay?”
“Yeah,” she sighed. “I just flubbed a major presentation today. I don’t know what was wrong–I just…. couldn’t think. I’ve lost my mojo or something. Or–” she gave a brittle laugh, “I have dementia.”
I frowned into the frigid Geneva wind. “There’s no way, mom. Flubs happen. You just need to rebuild your confidence.”
“I’m sure that’s it,” she said, and I relaxed.
When I graduated, she and my dad visited us in Minnesota. It was one of the last times I remember her as herself. We had a glorious weekend–Jordan and I had just adopted Chara, and my parents fawned over her. I remember watching them coo as she tumbled over their laps, and thinking about what wonderful grandparents they’d be.
I used to envision my future with her with beaming warmth. I imagined long shopping trips and meeting for lunch, just the two of us. I imagined us having the relationship she had with her mom–one of long phone calls and camaraderie and tea. Of living close to each other because we were just too close emotionally to live apart.
Of having her meet my future husband and put him through the wringer. Of having her pull out all of her funkiest dance moves at our wedding.
Of calling and telling her that we were expecting–and the tears of joy and excitement that she’d surely shed. Of having her in the hospital room with me while I gave birth. I imagined how good she’d be with her grandkids. How she’d hold them and bop them around and make monkey faces at them.
I felt so very lucky to have that future with her. I knew she’d be a source of continual joy and happiness, of pure goodness in a hard world.
What I didn’t realize was that the more you love someone, the harder it is to lose them. That loving someone so much can lead to struggling that much more when the future you’d envisioned with them is snatched from you.
On the last day of their visit, we went out to eat at a Chinese place in a strip mall. We shared a deliciously greasy meal, and then met back out at the cars. Theirs was packed–ready for the long journey back to New Jersey.
We all lingered over our goodbye. I felt so alone in Minnesota, marooned from my family and the life I knew. My parents had brought the sheer joy and carefreeness that comes from feeling taken care of. When my mom hugged me, we both sobbed. I felt like my heart was breaking as they pulled out of the parking lot.
After that, the changes started to happen more quickly. It was like one of J.K. Rowling’s dementors had gotten ahold of my mother, and was slowly, slowly sucking away her soul. She became quiet, meek. My bold, brash, stand-up-to-the-mafia mother, suddenly no longer had opinions about things.
When I got engaged to Jordan, she didn’t have much to say about the upcoming wedding. When I quizzed her about what she thought about my choice of life partner–about whether he was what she had imagined for her daughter–she just said, “Yes.” Nothing else, when before she’d had an opinion about everything.
At Jenna’s graduation, the changes were so obvious that I could no longer keep my mouth shut. Jenna and I convinced my dad that she needed to see her primary care physician. We pored over the possibilities–could it be a brain tumor? Depression? A thyroid imbalance? Dementia?
During a visit a few months later, she was so meek and quiet that she hardly seemed like herself. She had no opinions. She seemed dull, depressed. “Maybe you’re depressed,” I said.
“Maybe I’m depressed,” she repeated.
We got her into a doctor, who put her on antidepressants. But nothing changed–other than her reporting that she felt much happier.
It was odd–she had a perfect memory. When we went to a town she’d only been to a few times, she still remembered how to get around. She never mixed up names or words. But she was so irrevocably different. Her essential Ellen-ness had slipped away when we weren’t watching. And it had happened so gradually that we could hardly pinpoint how she’d changed.
Jenna and I started to push for answers, for more doctors, for something. We were scared. We sobbed and hugged each other and hoped that it was a brain tumor, because even brain tumors can sometimes be fixed.
It took us months, MRIs, playing around with different medication combos–and our first ever family feud–to get the diagnosis of early onset dementia.
Frontal lobe dementia, specifically. It’s aggressive, and isn’t like typical dementia or Alzheimer’s that comes on with old age. It doesn’t have anything to do with her memory. Instead, it’s all about her decision making abilities. Her rationality. Her personality.
Her bristliness–her dog adopting, cackling, tough-as-nails self–slipped away between our fingers. And no matter how hard we clutched at it, we couldn’t contain it.
It’s been three years since her diagnosis, and she’s a shadow of her former self. She can no longer drive, and rarely speaks. She spends hours watching Netflix or family videos on her phone, and has trouble controlling her impulse to eat. When she’s out of sight — like the time she had navigate through the Atlanta airport alone — my whole family feels terror as we try to figure out where she is.
It’s not always sad. She lights up when she holds Linden, spends hours staring at him. Sometimes she bounces him on her knee, and I imagine–in some alternate reality–Ellen of old, and how she would’ve held him. How she would’ve loved him.
Mourning her is a tricky business. She’s still here–to hug and cuddle with and try to make laugh. I’m often torn between savoring the moments we still have with her, and tamping down the roaring grief of missing who she used to be.
With each visit she gets a little worse–and I find myself looking fondly back on prior visits, when she was just a little more Ellen–even though during those visits I felt swept away by each and every negative change.
I miss her so much some days that I feel like I might puke. Other days, the grief is faded. Tucked safely behind busyness and life and a rosy-cheeked baby. Sometimes, the realization that I’ll never get her back–old Ellen, with her gruffness and laughter and warmth–hurts so much that it takes my breath away.
The next best thing to having her is remembering her, but already, the memories of who she was have blurred and faded behind who she is now. Old Ellen is becoming the stuff of legend in my mind, instead of a living, breathing person.
Here I am, twenty-four years after that little girl stood at the top of the slide–and I’m still trying to remember exactly who my mom is. But this time, she isn’t a block away, about to burst into my life like a beam of light, and remind me how lucky I am to have her.
This time, memories are all that I have.
A note from my dad:
After years of tests and denial, we’re now nearly certain that Ellen does indeed have what she first feared, but I denied — a variety of FTD, which is short for Frontotemporal Dementia. This isn’t Alzheimers, but it is related. It happens in the front part of the brain, and there are many variants. I won’t sugarcoat it — it’s a heartbreaking and frustrating situation because there are no treatments other than some semi-experimental drugs (that we are trying) and no known cure. You can learn more about FTD, but it’s depressing.
First, please know that she is getting the best possible care, and we’ve done everything possible to rule out all other possible causes. This includes visits to independent neurologists, a spinal tap; multiple brain MRIs. Still, there’s no certainty other than the MRIs that show some gradual brain tissue loss and her behavior changes. And, as one neurologist marveled, Ellen started this process with an amazing mind and is able to compensate in ways that make the disease harder to diagnose. As of last January, she outscored Donald Trump on a generic IQ test.
So remember that while she has been affected, there’s a lot she can still do. While her language and motivation are the most affected, her smile, memory, love of music, children and animals are still there. What she has isn’t contagious. Help me by sitting with her, giving her hugs, dancing with her, taking her on walks, letting her hold your baby. Those things are the best medicine.
And rest assured that she seems content and happy; this is a huge godsend to us. She’s not overly stressed or worried about our situation (which is very unlike Ellen), and is thrilled to be a retired grandmother, after a white knuckle career commuting to Trenton, managing huge budgets and being married to a trumpet player.
While her professional career was shortened, we can celebrate her accomplishments as a wife, mother, and now grandmother; and as a fierce advocate for the children of New Jersey, where she led the division of early childhood education. Our home is full plaques that mark her accomplishments.
How you can help us
If you have a medical or research background help me watch the research for new developments. And come visit. Our door is always open. Be with Ellen — she’s still lots of fun.