July 23, 2019

I am swaying back and forth in a loose embrace. There’s no music, just the soft humming of the two of us, accompanying ourselves with a little improvised ditty. Just feet from us, my niece is talking earnestly, leaning in, consulting her notebook. I look over my dance partner’s shoulder every now and then to wave at my niece. I add a few points here and there: “But if we alternate between Ativan and Seroquel, that seems to keep her kind of calm.” More humming ... “If we put her on a low dose of antibiotics to prevent recurring UTI’s, we’d better put her on a good probiotic.” Swaying back and forth ...

We are in a psychiatrist’s office with a paid caregiver, my niece and myself. And I am slow dancing with my sister, Susan.

Susan is in the mid-to-late stage of Alzheimer’s. She is 69 years old and can no longer read, watch TV, cook, dress herself, shower herself adequately, go to the bathroom by herself. She is frightened much of the time: of clouds, of the wind moving the bushes in the back of her yard, of any sudden noises or movements. She is hallucinating more and more from the medicines she is on, picking up things that are not there, worrying about people who do not exist. It is exhausting and heartbreaking to witness.

She looks great to someone who doesn’t know her. She’s lost so much weight, she is the size she was in college, and her mismatched clothes now hang off her narrow frame. But she is not well. Her eyes dart, looking for the familiar when nothing and almost no one is. She blessedly remembers me, my siblings, her kids ... for now ...

Susan is my older sister, or rather, one of them. She is fifteen years older than me and has been one of a team of powerful, smart, capable older sisters who were co-mothers to me my whole life. She was a nurse, a post 1960’s hippie who was forever ready to pitch in, raise money, organize her coworkers, her family, her community. Always helping others fix their problems. “Need a therapist referral? Done. Looking for a specialist in scoliosis? Got it. You’re painting your nursery before the baby arrives? On the way over with paintbrushes and a ladder.” She would swoop into everything she did with energy, smarts, and efficiency to observe, assess and do. She thrived on it. 

I miss her. The real her. I miss reaching out to her with news or a problem or concern and feeling better about whatever it was afterward. I miss her calling me on the phone, “Mary ... Susan. What are you doing for lunch?” I miss planning family events with her: Christmas, birthdays, family vacations. I miss her utter faith in me and my abilities. I miss her talent to organize and fix problems and I want her to fix this. Fix this disease. Fix herself. Make this stop.

She always hated being on meds, though she eventually was on an antidepressant. Now she is on that, plus an anxiety pill, an antipsychotic pill, a pill to help her fall sleep, a pill to help her stay asleep. Each pill has its quirky side effects that may or may not be worth it. And just when we decide on a medicine, her disease changes and she’s struggling again. Over and over this happens. For years now. Six long, brutal years.

Susan was diagnosed with early onset Alzheimer’s Disease at age 63, though we realize that she was symptomatic at 59? 58? Erratic behavior, unexplained comments, more drinking. She just wasn’t herself. Then, her husband of 40 years got sick, so sick and died quickly, before anyone could even digest the news ...  was that months ago or 100 years ago? Time is a blur these days. The weeks since his death have been full of suffering, confusion, tears, and worry for her and her tribe of family and friends as her Alzheimer’s Disease is accelerating at heartbreaking speed.

I want this dance to stop, for her to catch her breath and come back to us, fully healthy, bright and smart and capable and funny. I want the dance to be one of carefree joy from before all of this, twirling to Sinatra at the Sands in my parents’ back room, grooving to My Sharona at family weddings. Once Susan started to get sick, dancing was her escape. Hiding in plain sight, she was just one of the many sweaty bodies on the dance floor, smiling and jumping around like everyone else. She could have fun and not have to worry about keeping up, following a conversation, remembering someone’s name. She could just move with the music, dancing like no one was watching. Only everyone was, with worried eyes and heavy hearts. 

As Alzheimer’s enveloped my once bright, shiny sister, she became enamored of the movie Mama Mia, thrilling to its sound track over and over again. We would watch it in my family room and dance together to the song Dancing Queen, singing and laughing loudly. “This is fantastic!” she would say. “Have our sisters seen this?!” After a while, the dance simplified to a sway back and forth on the couch, holding hands, feet tossing to and fro in time to the music. 

Now, in this office, she is leaning on me, rocking back and forth, barely moving.

Months later, she is settled in at a memory care unit and finds her groove again, moving to whatever music is playing on TV, at sing-a-longs or to the sound track of music her kids made her on her iPhone: Love Me Do; Blowing in the Wind; and yes, Dancing Queen. When she dances here, she’s acting very much like herself, full of vigor and joy. She’s working the room, making sure everyone is having as much fun as she. Again, it is exhausting to watch because it feels like she is indeed acting, struggling so hard to be “normal.”

A year and a half later, when Covid ripped through her facility, Susan’s legs went out from underneath her, her coordination gone. She recovered from Covid, remarkably, but the dancing stopped. She kept trying to get up, to be a part of it all. “We all know you are terrified. We are, too,” I would think. The spirit was willing, the flesh was weak. Watching her from a remote camera in her room I would think, “Enough now. Stop trying to perform for us, to make us all think you are okay, happy, yourself. And who is there to dance with you? Enough now.”

Finally, little by little, Susan slowed down. At the end, a few of us were able to come in and sit with her and all that was left to dance were her eyes, open and darting around the room until her body finally went to sleep. The dancing finally, blessedly, sadly stopped. Shhhhh. 

Thank you, Susan, for all the dances we had throughout my life, before and after your diagnosis. At weddings, family vacations, in my family room in front of the TV and yes, even in the doctor’s office, holding you close, rubbing your back, calming both our fears ... my sister, my friend, my confidant, my mentor, my co-mother, my Dancing Queen.