[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 L, 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.
Feathery Thoughts 
I do know how you feel. My oldest brother was diagnosed with Alzheimer’s. We think he probably has had it for over 7 years. Maybe 10. We lose him an inch at a time though lately, it is being measured in feet. He is unmarried so my sister who is retired and divorced, beats the brunt of his care. I help when I can but my husband has a serious heart condition so I can only do so much. My other brother has his health issues but tries to help. He lives far away but comes as often as he can. I am 17 years younger than my brother. The child they never thought they would have 20 years after their third. At this point, I have cared for my mother, aunt and mother-in-law and I am tired. He is fast approaching the need for a long term care facility but no one wants to make that decision. We have glimpses of Kevin and he knows us but the situation is causing turmoil within our once close knit family and much resentment. He wouldn’t want it that way.
It’s so hard watching someone you love slip away slowly. And the care part of it is enormous. One of things I didn’t get into in this post is how absolutely heroic my dad has been in caring for my mom. He’s learned how to buy bras, color hair, and pluck chin hairs so that she can feel as “herself” as possible—not to mention handling incontinence and the terrifying moments when she disappears. It’s a huge amount of work. We’ve been lucky to have an incredible community in the town where I grew up, because my sister and I live far away and can only really offer moral support—thankfully our neighbors and family friends keep a close eye on both my mom and dad. I feel for you and your family—know that you aren’t alone!
What a great testimony to a wonderful woman! I went to high school with Ellen, and she was a warm, loving friend who people flocked to be with I love reading that she continues to do that. My heart goes out to all of you.
Thanks so much, Andrea—I’d love to hear more about the high school version of my mom! As a kid I always wished we’d grown up the same age, so that we could’ve been friends.
My heart aches for all of you. Ellen was my sister for awhile. Stay Strong.
Ellen was a dear friend in high school and I spent too many hours to count at the wonderful Wolock household on Buchanan, swimming in the pool, cuddling with Chatty and Gem on the sofa in the family room, listening to Joni Mitchell and talking for hours and hours and hours. It was the very best place to be. All of us who were lucky enough to know Ellen and her wonderful brothers, and Mel and Izzy, can never forget what very special people they were and how they opened their home and their hearts to us. Your essay about your mom touched me deeply, and really captured who she is. One of a kind, for sure. Love that girl. xoxo Catherine Borri Lyness
Thanks so much, Catherine. I read your comment to my dad—those memories of my mom are gems. She’s always been something else. Thank you for sharing with us ❤️
I feel deeply for everyone going through this type of situation. I took a writing class a few months ago with a middle-aged man who had lost his wife to early-onset Alzheimer’s and I could sense through his writing what a complicated struggle it had been, like you said, to lose someone incrementally. My grandmother was recently diagnosed with Alzheimer’s and we’re trying to figure out how to help/what we can do. It is so frustrating to be able to do so little. I imagine that being the person who is going through it can feel so overwhelming and scary. I wish for you all whatever you need to help you get through it and hold on to the good that you can.
So sorry to hear about your grandmother. It is a bizarre form of loss—I think you nailed it with the word “incrementally.” It’s mourning stretched out over the span of years. Best to you and your family as you navigate it ❤️
Love you all! Love Ellen always and wish I still lived in NJ but hope to be able to get there soon. I have so many memories (the wonderful, the good, the fun, the sad, the so personal and then the tough ones from our work). I will be in touch privately. ♥️Kathie
I would absolutely love to hear those memories! Hearing other people’s memories of her helps me know that I haven’t forgotten. Hope you’re doing well, and thanks for writing ❤️
Sarah, you write so beautifully and describe your feelings so well. I can see your mom and your dad in you. When Peter and I were at Izzy and Mel’s after Mell’s funeral, I watched you with your beautiful baby and I watched her watching you. She sees you, i could see her joy in watching you with him, she feels safe and comfortable with you. You are like her in many ways.
I don’t have a research background, but my son Jacob does, and he works in the neuroscience field. Please tell your dad I will share this with him, and ask him to watch for anything that can help. He loved Mel and Loves Izzy, and he will be happy to help watch, I am sure. Xoxo, Becky
Beautiful message of love and loss. I worked with Warren and Ellen at High/Scope where she was always the “adult in the room.” I can’t imagine her big personality changing. Take care.
Reading this while crying, as it is beautifully written by both of you. Warren, my big brother Ted has been caring for his wife, 22 years his senior, who is in the advanced stages of a similar dementia. I have never witnessed such love and devotion, and it is MUSIC which has helped the two of them navigate through this. Sending your family love and compassion from California🕉❤️
What a wonderful tribute to a great person who, as you say, you can still enjoy for what she still has while mourning the losses that affect her and you all. Ellen for years was a dear colleague and friend at NJDOE with whom I was lucky to collaborate on many issues. I missed her greatly after she left NJDOE, as did (and still do) so many others. I’m so glad she is in the care of her loving family.
The leading picture in your story is how I have always remember you. I met your mom many years ago when we lived in Michigan. I lived in the apt above you.. Your mom will never know the impact she made in my life. Her strength, compassion and drive brought out those things within myself that I did not know was there. I have so many wonderful memories of hanging out with your parents, listening to your dad play his trumpet at the park and playing with you as a child. I as well as you, still have wonderful memories of Ellen. As the women we once knew slips away, our memories will forever remain. My thoughts and prayers are with you, Ellen and your family!
Hey Sheri! I actually (vaguely) remember you too–and you made a cameo in my bedtime song for years, even after we’d moved to New Jersey (my dad used to sing about saying goodnight to everyone we knew and cared about). Your words and memories are totally precious to us–they help to bring “old Ellen” back, even if for a moment. Thanks for writing!
Thank you for sharing. I’m familiar with dementia and Alzheimer’s and wonder sometimes if Lyme Disease could be related. I’ll keep my eyes open for info on FTD.
Thanks Carol! I think that my mom did have Lyme years ago, but it was caught and treated. More recently when trying to rule out diagnoses we tested for it and it showed up as negative.
So beautifully written, so painful to read. Back a million years ago, I was a neighbor to the Wolocks each summer in Kerhonkson, New York. How clearly I remember joining Steve and David, Charlie and Nancy and Janie, or some combination of them, on a walk to the ice cream concession at the Florence House nearby. We wheeled Ellen, the youngest, in a stroller. I generally got a Fudgsicle I don’t remember what we got for Ellen. It was about 1960, I think, and we all have loved Ellen for the past sixty-plus years. The memories will live on.
I love this! So fun to picture my mom in a stroller. Fudgsicles are an excellent choice :). Thanks so much for writing, Jesse. Hope all is well with you.
Sarah,
Your words and writing are crafted with caring love and powerful emotion. Please, know that memories of your Mom, her brilliant, devoted advocacy, research, and strategic work, and her billowing, generous love and friendship continue to resonate with vibrant strength. Ellen held the Bible for my swearing in to the New Jersey State Board of Education. Be proud, be very, very proud. Warren and Ellen are counted among education’s most innovative and courageous advocates, and their work toward children’s learning has never faltered. May your memories always bring you strength.
I adapt this haiku from my book, Blood Trail, after reading your words and as I think of Ellen and those she loves so dearly:
Silent, dawn flight
great blue heron sky
the color of her wings
As your hearts ache, may your pride, memories, and love bring you not only strength and resiliency but also fresh, heartfelt moments of lasting joy. My heart joins with yours and my thoughts are with you and your family across the miles.
Hi Florence,
Thanks so much for the beautiful words–they mean a lot. In particular the poem; I’ve read it through a few times now, and it just gets lovelier with each read.
-Sarah
Your mom became a part of my life towards the end of high school…
and as newly minted graduates…a caper was hatched!
A road trip to Montana/Colorado, to visit ellen’s brother and my sister. So,with the blessings
[and the use of their open road camper] of Mel and Isabelle and the willing accomplices
Pat and Vinnie we set off…memories fondly etched.
Here’s one that resonates with the cartwheel in the seven-eleven!
Leaving Boulder we bought a case of beer and on discovering it was 3.2 alcohol content [disappointed] Vinnie and I decided to drink as much of it as we could.. so we did.
The girls could drive. So between the monotony of the Kansas highway and the weak beer
we both fell asleep…waking to giggles… a topless pilot and co-pilot and now escorted by a
convoy of truckers!
Our first year of college we remained close. I would hitch to Keene NH from Putney VT to hang out. We both transferred and lost touch for something like 34 years!
Almost five years ago Ellen and I re connected…!
It was great! Her warmth, humor, and the easy nature of our conversations really gave a boost to my life!
I looked so forward to the events at the Rutgers club to have more” talk time” with your mom.
On one of these occasions… I mentioned that David Bromberg was playing in Flemington, but was sold out… bummer. Ellen told me she would get us tickets. ..I was skeptical, but within twenty four hours she called me with the tickets…arriving slightly late {venue filled but for our four seats] your mom waiting at the door … we sat… the band came on … it
was fantastic!
Peace, Love, and Understanding to you and your family and all those who are lucky enough to be a part of Ellen’s universe.
Hey Tommy–this is one of the best comments we’ve gotten yet. Absolutely love hearing the stories about my mom–she was wild and warm and wonderful. So sorry that you didn’t get to spend more years of friendship together post reconnecting. Any time you want to share more memories, please send them along! They’re greatly cherished. Lots of love from her daughters.
Tommy I remember this so well as one of those many times when Ellen would break every convention or social norm to help someone in need. We were already seated in a packed section of an eager crowd. There was no way we could get outside. But not for Ellen. She was able to get an entire row of people to stand up so she could find you. And as always she succeeded — after she found you and got you inside she came back with a huge smile. “I found them!” Thanks for this story!
Well Sarah – Ellen called me a couple days after graduating college in 79 and said, “want to go to montana?” i said “absolutely not! where IS montana anyway?!” 3 days later i called her back and said “lets do it!”. we took the greyhound bus for 3 days/nights in 79 and had the summer of our lives…and im still here, living in the rattlesnake valley where bergamo ellen and i hitch hiked in the back of a hay wagon to go hiking. Your mom is a gift to this earth. how lucky you are to be her daughter. how sad i am to miss the years. I am heartbroken to hear of this and would love to share memories.
Bev–your memories would mean the world to us. Catching glimpses of the scrappy, silly person she used to be is a rare gift these days. I grew up hearing about some of the adventures the two of you went on, and they’re like legends in my mind. To hear them confirmed and repeated is kind of like having fairy tales come to life! Also, I know she adores you too–she always talked about how sad she was that she hadn’t been better about keeping in touch. Any time you want to share a story, feel free to email me (sbuckleit@gmail.com)!
Stay strong. Ellen and I still do a lot of dancing. And she has her smile that keeps me going.