Spinnin' Around

“I’ve been writing stories about my mother for a fucking long time, and I’m still writing about her; it’s all I can do,” I tell my friend Donna, when I describe the latest bizarre chapter in the saga of my mom’s dementia.   As she loses what’s left of her mind and now her body, I struggle not to lose my mind, trying to navigate tough end-of-life realities.

The caretaker at the small board and care home, where I moved my mother three months ago, instructed me to call Hospice by the Bay, when after a series of mini-strokes my mother started to seriously decline. 

Ironically, though the kind and competent Hospice team of professionals (a nurse and doctor and social worker) agree that my mom is in end stages of her life and should be made comfortable, kept in bed, and administered morphine and anti-anxiety medication, the caregiver, who has a complicated past that involves being a child of Holocaust survivors, holds stubbornly to her philosophy of ensuring that people with dementia live with dignity; she refuses to comply with the program.

I find myself in a surreal struggle with this caretaker, who denies my mother’s symptoms and is determined to keep her alive and rehabilitate her.  This has been going on for five weeks now; I intervene to administer her medications, or ask the Hospice nurse to stop by the home. But the comfort care ordered by medical professionals and desired by me is not happening. 

Dressed in clothes each day, and put into her wheel chair, my mom looks and behaves like a trapped animal. She is not comfortable. Her body is rigid, and she spends her days upright in her wheelchair, instead of horizontal in her hospital bed. It shatters my spirit to see her like this.

The last horrific phase of this dementia disease just won’t quit. Or perhaps it’s my mom, a narcissist, to her core, who won’t do the quitting. “She’s a tough one,” my daughter keenly observes.  My mom is stubborn, willful, and always insisted on having her way, so it makes perfect sense that she’s not going out easy. I can’t have a discussion with her because she lacks the cognition to understand what is happening to her, or weigh in.  

I watch her grimace and struggle to breathe when I visit. She huffs and puffs, as she sits mostly still, her hands shaking and fingers wandering. She stares ahead, stupefied, as I place in her lap a small stuffed animal who resembles our King Charles Cavalier, Picasso, who died this past December. As I have done for years, I soothe and comfort her.

On days when it’s not too hot, I take her into the backyard garden, and let the sunshine wash over her.  Twice recently, two hummingbirds, with chartreuse bellies have visited, hovering over the fading lavender Agapanthus. I think these hummingbird visitors are Pat’s sister Kathy, and her husband, Stan, who have both passed. I ask my father to come get her, but so far, Sid is too busy enjoying the afterlife of unlimited buffets, to comply.

I play her the tunes I have been playing for her for the past decade. The lyrics miraculously remained etched in her failing brain, until recently.  Sinatra declares, “I said, that's life (that's life) and as funny as it may seem/Some people get their kicks/Stompin' on a dream/But I don't let it, let it get me down/'Cause this fine old world it keeps spinnin' around.”  It sure does.

I have been giving her a low dose of liquid morphine, along with a spoonful of applesauce to cut the bitterness. I change her Fentanal patch, and reposition her in the adjustable wheelchair, tilting her back, placing a green pillow under her head, and another pillow under her legs that I support with the raised extenders, so she can rest.  

I don’t think she knows it is me anymore, though I tell her I love her, kiss her forehead, hold her hands, and tell her it’s me, the middle one, her daughter Sue, over and over. 

I had no idea that death could be such hard work. I close my eyes each day and try to envision a good outcome for my mom. I tell my therapist that I must be being divinely tested, or that I have some major lessons to learn from all this.  I am letting go, letting her go.  That’s life. That’s death. 

And then one night at eleven o'clock, she just slips away, around the same time that my dad died.

When the young woman from Keaton’s Mortuary hand delivered my mom’s ashes to my house, I thought darkly. “You’ve heard of Uber Eats, how about a service called Uber Dies? 

The kind bearer of my mom’s death certificate and ashes, is a mid- twenties, congenial Marin Catholic graduate. She sat at our dining room table as the sun warmed the space.  In the empty seat next to her, I envisioned by mom reading magazines or the newspaper. 

When my hyper literate mother could only look at the pictures, no longer able to read, my heart broke, as our mutual lifelong passion, vanished. But I remember her happily inhabiting this spot. 

I blink myself back to present, as the young woman gently showed me how to open the black plastic container to get to the ashes; she then returned the container to an emerald green velvet bag. I thanked her for coming by. She remembered I was recovering from surgery for a shattered wrist and so had dropped off the ashes to save me a trip to the Mortuary. 

Once she left, I promptly took the bag into my bedroom and placed it on my closet shelf, next to Poppy’s ashes. I have kept these in a cardboard box inside a white paper bag for eight years. When I stayed a few extra days in Scottsdale, December of 2012, Pat and Sophie brought Poppy home; they had an uncomfortable moment with TSA as they sent the packed ashes through the scanner. When I got home, I put Poppy on the shelf and figured I’d wait for Bubbe before I did anything with the cremains.

Jews normally don’t do ashes. We bury bodies within 48-hours of death. Catholics don’t do ashes either. Pat, an ex-Catholic wannabe Jew, recently noticed that Sophie and I had put the box with the ashes of Picasso on the bookshelf in the TV room. She says she is nervous about having all these ashes in the house, but I tell her that in November at Thanksgiving, when my sisters convene in Greenbrae, we will create a ritual to release the cremains of our loved ones.

Throughout ash delivery day as I traveled around the house, I glanced at photos of my parents together. In Maui at the Haleakala Crater. On the sofa in their Scottsdale house. At a cousin’s bar mitzvah party. Dressed up for their 50^thanniversary party holding their grandchildren, Zak and Sophie, in their laps. They smile, heads positioned close together as if conspiring. 

Best friends and partners for 62 years, they were such different distinct people (extrovert/introvert, empath/narcissist, pragmatist/dreamer, yet they shared their passion for books, theater, music, film, sports (both playing and watching), beaches, family, grandparenthood, long term friendships, and of course for each other. Their relationship had its challenges, but they had such an interesting and enduring connection fueled by intellect and humor and love.  

My mom’s departure from the planet brings up my father’s death for me.  My feisty, blunt, non-traditional mother went about her life for the past almost 9 years, but she kept looking around the corner, hoping that my dad would show up.  For many years so did I; but with time I’ve accepted his absence and attempt to embody his presence in my life. Still, I miss him every day. And I imagine I will do the same with my departed mom.

I now understand what many of my peers who have lost both parents describe as being an orphan. It makes me feel vulnerable and sad. My history as seen through the lives of two very significant influencers, people who had my back, no matter, is gone. I’ve got my two loving sisters, who now are the people in my family who have known me for the longest time. I have my loving wife and daughter who deeply see me and support me. But my family has downsized and there’s no escaping the sense of loneliness when both parents have died.

As my mom lost her memory over the past decade, I couldn’t access our family’s past through her experiences; yet, she figured mightily in my daily routines and thoughts. I learned to live in the Now with her, as that was all she could access as her brain failed.  When my dad died, and her dementia decline began, I became her designated person; she expressed gratitude towards me and responded to my kindness with uncharacteristic sweetness. She stopped judging and criticizing me; she even told me that she loved my long wild curly hair, which she had ordered me to cut off in my childhood and teens. 

As I looked out for my mom, I practiced patience in a profound way. I struggled with her over many things – mostly her refusal to engage in the communities in which she lived.  “Go to exercise class,” I’d admonish her.  “Try the Sing-a-long, or play Bingo,” I’d plea, hoping that the activities at her Senior community would make her happy. She said “no,” to everything as the world got increasingly jumbled and frightening to her. 

But she mostly said “yes” to me whenever I asked her to do things with me. We colored in adult coloring books. We played simple card games. We drove around in my car belting out the soundtrack of her life. We went out for meals and we saw many movies. In return she expected me to be there for her, entertain her, think for her, and manage her fragmenting life.  

She had always spent time alone, but with my dad leading the way, engaged socially.  She liked spending time one on one with a friend or in small groups. She loved getting on the floor at age 70 with her two grandchildren to play; she delighted in beating her grandson in Poker and seeing her granddaughter perform.  She competed fiercely, be it in tennis or in card games, loving to win, hating to lose.

Her life had depth and meaning; she ran her pharmacy business, managed the household, devoured her books, embraced the computer, completed complex acrostics and crossword puzzles, played maj and bridge. She loved attending plays on Broadway, going to first run films, and watching sporting events. Yet with her dementia, all that fell away.

For almost a decade, I willingly stepped up to be her companion and caretaker, sometimes to my detriment.  I had to learn how to set limits with my demanding mom; it was a breakthrough when I finally turned the ringer of my phone off so that I would not have to answer her 20 or more phone calls a day, asking me, “what should I do with myself?” or telling me to come get her. 

Through much heartache, stress, and good therapy, I learned how to let her just be, and not be so reactive when she’d do or say things that didn’t make sense or offended me, make demands, or sadly when bad things happened to her because she had lost functionality. I so wanted her life under my watch to be good.  I so wanted to be the good mother that I wished she had been to me.  

I know in my heart that I was a great daughter and that I stood by her  side until her death.  Even as I write this, I am in disbelief. I wake in the mornings and remind myself that today she is really gone. I don’t need to stop by and see her or take her out. There is nothing I need to do for her.  I am free but filled with an aching loss. I am motherless and this is fresh for me. And there is so much to unpack as I grieve her.

Growing up, I suffered when my mother did not see me or take care of me.  I learned how to care for myself and how to mother others.  When I hit my mid-twenties, our relationship changed and we became friends. Then our roles reversed as my once super competent mom started losing cognitive function.  I spoke to my mother almost every single day for forty years; it did not matter that she could be difficult, I spoke to her always.

At the end I soothed her like a mother soothes her baby. I fed her mushy food, held her hands, rubbed her arms and legs, and told her repeatedly that I loved her.  That is all that mattered. Not what she didn’t do or what she did do, good or bad, as my mother.  What mattered was the love. All I could do for her in the end was love her.

I went to Chase bank to close her remaining bank accounts, the final bit of administrivia I needed to do. My mom taught me so much about money and finances. She ran our household, saved the family from bankruptcy, invested, or as she noted, “played the stock market.” By example, she made sure I had the wherewithal to be an independent woman. I shared this fact about my mom with the young woman who helped me at the bank and then cried in her cubicle.

I cried for little Sue, whose tangled unruly hair my mom tried to control by chopping it off.  I cried because I no longer could to talk to my mom about our stock investments over lunch, or tell her the latest Sophie news.  I cried because there were no more novels or films to discuss with her, or  lyrics to remember and rhyme with her.

I have difficulty relating to myself as an old person, but I realize that now, I am an elder, and no longer an engaged and devoted daughter. It feels strange, this untethering and change in my identity.  Over the years I have written so many bits and pieces about my mother, trying to find words to describe and understand her, and our relationship.  The words, they keep on coming; they are my comfort, my window, and my mirror.  

Emily Dickinson wrote: “Dying is a wild night and a new road.” I’d add, grieving is an unforeseeable day and a timeless walk. 

Since she died on August 22, as I lay in bed in the dark and I watch the colors show up in the dawn sky, I have my mother on my mind. 

I see her laughing with her brother and sister as tweens in Wilkes Barre. I see her standing with my dad, amazed at the construction their new house at Miller Beach.  I see her busy at the cash register of her pharmacy at Brooks Tower in Denver.  I see her scolding my father for poaching her shot on the tennis courts at their Scottsdale condo.  I see her at our house in San Rafael, holding baby Zak in one arm and baby Sophie in the other, beaming because she got to be their Bubbe.  I see her in the wheelchair I've pushed on the street to a nearby Mexican restaurant where she throws her head back to soak up the California rays. 

I keep hearing her voice asking, “What’s cooking, dolly?” And I say to the universe, “A lot, mom. A whole lot. Let me tell you."