Approaching death

My mom nailed her Hospice by the Bay interview.

Peter, the good looking millennial admitting nurse spent an hour talking to me, my sister Jamie, and Pilar, the extraordinary caregiver and founder of Shalom House, a group home for people with dementia. He asked several questions intended to qualify my mom for the Medicare funded range of hospice services.

Then he asked to speak directly to my mom, who slumped in her wheelchair at the dining room table, eyes closed, right arm shaking. We believe that she suffered a series of TIAS, or mini strokes this week, bringing her to a new level of dysfunction, unable to move, speak more than a word, or eat more than a few bites of soft food with assistance.

“Hello, my name is Peter,” he said leaning in, his face close to hers. “Can you tell me your first and last name?”

No response. He asked again. Nothing.

“Mom, can you open your eyes and meet Peter. He’s here to help us.”

She manages to open her eyes and looks for a second at Peter, who repeats, “What is your first and last name?

“Sexy,” she says and we all crack up.  

“Sexy” Zemel qualified for hospice services. Within a day, I received calls and met with members of her support team including her nurse, Casey, a social worker Katerina, and Rabbi Miriam, our spiritual counselor.  From my intense conversations with each of them, ranging from understanding how to make decisions about discontinuing medications, to honoring our cultural Jewish roots and practicing loving kindness in the face of death, to identifying mortuary services,  I am sure that we are in good hands.

Though I have witnessed family and friends utilizing hospice services, this is the first time I have been so intimately involved.  I am greatly relieved.   Providing pain and symptom management, and care and comfort to patients, their families, and caregivers, is the mission of this organization that has been around in Marin for 44 years.   

End of life – these people have seen a lot of endings and know what to do.  For the past few months I have been using an app on my iPhone called “WeCroak.”  It randomly sends me  5 quotes per day, all reminding me that we are going to die. The creators of the app decided on the number 5 because in Bhutan “they say that contemplating death five times daily brings happiness.”

I enjoy this antidote to the bad news barrage of other social media.  Reading words from writers, thinkers, and spiritual leaders about death keeps life real and grounds me as I navigate this transition with my mom.  My own mantra this week has been “embrace fragility, accept uncertainty.”  

Dying is one incredible process to witness and experience.  We don’t talk about it nearly enough.  Nor do we discuss ambiguous loss and dementia, though this robber of a disease has stolen so much from so many families.  Often what I’ve experienced with my mom this past ten years has left me feeling very alone and sad.   I am still very sad but feeling less alone as we make this journey towards her death. 

In the Nowness

I sit in the sunshine with Shirley, whose eyelids flutter, then shut like the yellow dogface butterflies that flit about the peonies planted in pots on the patio outside her bedroom at Shalom House.

Her royal blue shirt matches her eye color, and her white silver hair curls feathersoft on each side of her head that tilts a bit to the right. She relaxes as Frank Sinatra croons from my iPhone.

She’s in this dementia fugue state more often than not. Today, I attempt to engage her in a game of War, one of the first card games she taught me and I played with my daughter when she was a toddler.

“What card game did your parents like to play? Poker?” I ask even though I know the answer. Sometimes I can reach into her past and pluck a memory for her like a fragrant flower.

She shakes her head yes, as I turn over the cards in her pile. I end up playing both hands, so honestly, I’m not sure who actually won. A fierce competitor, my mom liked to win. She was a lousy loser. With time I’ve learned to be a gracious loser but I too prefer winning; more importantly I give a game my all if it interests me. I invest more in the process than the outcome.

Shirley rests in the sunshine, with so little cognition left that she can no longer do simple puzzles, speak sentences, or sing the lyrics to the songs etched in her failing brain. I ask her if she is comfortable and she once again slowly nods. I stroke her arm and take her hand in mine.

I examine her face closely, marveling at the smoothness of her skin. and wonder where in the world she has drifted off to. I softly ask if she’d like to leave the planet but she doesn’t open her eyes, nod, or answer my question that is more a suggestion. I look again to make sure she is breathing. She is.

I wonder what her death will look like. Will she slip away in her sleep? Will her brain stop sending instructions to her body? How much more can she possibly lose? What is she waiting for?

I think a lot about her dying, about her life, and how she has arrived at a place that is defined by deficits. Memory, language, mobility, ability, identity, these all elude my once smart, stubborn, in-charge mother, as she struggles to do most everything. Without her caretakers, she surely would die.

They tell me that my mom wakes sometimes in the night and cries out for help. But she can’t say what she needs, and once reassured, she falls back to sleep.

Some days I can hardly muster the strength to simply sit beside her. But I do it. I am present and kind and gentle with her, with myself, for her, for my father, for my family.

Witnessing this long descent into dementia hell has tested my patience, flooded me with anxiety, and racked me with sorrow. But here I sit with her, in a moment of acceptance, the sun on my face, reminding myself to just be here in the nowness. For my mom the now is what she has left.

Henrietta's Closeup

I sit on a lawn chair in a hay carpeted shed with Henrietta, a large brown hog, at my side, and a renowned portrait artist, Brenda Zlamany seated directly across from me, peering into her Camera Lucida, a drawing aid that performs an optical superimposition of the subject being viewed.

“This one is from the 40’s,” explains the slight dark curly haired woman dressed in black jeans, now smudged with dirt. “I could replace it, but…”

Brenda, a city gal from Brooklyn, has never had a close encounter with a hog; she’s nervous that Henrietta might destroy her delicate piece of camera equipment. I reassure her and distract Henrietta with a carrot. From the sketch she quickly makes, Brenda will paint Henrietta and me with watercolors; this portrait will be included in a project Brenda is doing about the impact of climate change on people’s lives.

Brenda, who brands herself “the Itinerant Portraitist” is visiting Goatlandia, one of several stops in her exploration of the devastating Sonoma fires. She’s studying how Californians live with the effects of climate change induced threats. When she’s done with us, she’ll conduct her final interview and make a portrait of the Fire Chief of Sonoma County; she'll pack up her paints and proceed to her next destination, Alaska. She'll be painting portraits of Inuit whalers in Utqiagvik and of scientists and park rangers in Denali National Park.

Through portraiture and video interviews that will later be edited for a documentary film, Brenda gives context and meaning to social and environmental justice issues. She captures the faces of people (and now, pigs), collecting narratives that both inspire and inhabit each portrait. The collaboration between artist and subject that Brenda facilitates results in something remarkable.

Her work is not just a rendering of a person -- it becomes part of a story, an exchange that belongs to something larger, something that she hopes will move people to care deeply and perhaps take action about issues such as climate change. “We’ve gotten so used to and numbed by the media images,” she explains. She is interested in slowing things down and providing a richer perspective through her art. 

I talk to Brenda about how my experience at Goatlandia has helped me counter the despair I feel about the state of the world; I explain how caring for these creatures soothes my soul and sparks joy. I think about the sign I pass on 101 when I drive home from the animal sanctuary that declares, “Sonoma, we will rise from the ashes.”

Before our session in the shed is over, Henrietta places her snout into Brenda’s palette of watercolors.

Laughing, I grab Brenda’s iPhone, and start videoing the curious hog and the artist interacting.  “I’ve never had an experience like this one,” Brenda declares as she wipes “pig slime” from the top corner of her paper.  

Some of Brenda’s past projects include traveling throughout China, painting portraits of aboriginal Taiwanese teenagers and over 888 Chinese people. She’s created 100 portraits of 100-year-olds at the Hebrew National Home in New York, painting and talking with many Holocaust survivors.  She has received a Fulbright grant to pursue her artistic globetrotting, and later when I check out her web site (brendazlamany.com), I am blown away by the beauty and humanity of her work.

“And now you’re here at Goatlandia, where we also have stories of survivors,” I observe. I describe how as a runt, Henrietta was thrown into a fire by an abusive farmer, and then saved by the founders of Goatlandia. I show her a photo of Henrietta as a baby, wearing a t-shirt reading “Pants Optional,” that protected the burnt skin on her back. I tell Brenda how Alana and Deborah rescued a large herd of goats during the Camp Fire.  

She remarks on the calm and peaceful vibe at Goatlandia, marveling at how the animals interact seamlessly across species. To punctuate the point, a rooster pops into the shed to check out what we’re up to, and then the Hog sisters amble in, wondering why they aren’t being included in the portrait. I reward Henrietta with an apple, as she has been such a willing participant.

We talk for a while on the porch as Brenda continues to paint  -- about our daughters, about the power of storytelling, about art and writing. “Goya painted animals,” Brenda says.  “Did he do pigs?” I ask, delighting at the image of Henrietta she has captured.  Me, I am looking pretty intense in the portrait, but that’s not surprising. 

Brenda promises to send me an image of the finished portrait and then hurries off to her next meeting because what was supposed to take 20 minutes has turned into three hours.  She waves goodbye from behind the wheel of her rental car; inspired by this interaction, I return to raking goat poop. Another unexpected day at Goatlandia.

Spit Gel

When I look at Greer, I feel the force and fancy of her grandmother.  Kathy, my wife Patricia’s older sister, is present in the essence of our niece Kristen’s baby girl, who wears her name,  Greer Kathleen, like a multicolored polka dotted romper. 

Our broken hearts heal just a bit when we hold Greer close. She leans in, relaxed in the crook of my arm. She watches everything, so attentive; I can almost see the synapses forming in her baby brain. Her small chin is determined, her blue eyes so bright. She smells like the promise of apple blossoms and summertime. 

How lucky am I to breathe her in, when her grandma cannot; I exhale a moment of grief, then take a steady breath, grateful for this baby girl.

My sister-in-law, who left the planet far before we were ready, faithfully convened the Keaney family at the Jersey Shore every summer for years at a house that did not survive Hurricane Sandy.  On this Memorial Day weekend, Kathy’s oldest daughter, Kristen graciously steps in to fill those awesome sandals; she gathers us at her comfortable home in the suburbs of New Jersey for her childrens’ birthday party.

Our nieces, the Shala Sisters, Kristen, Katlin, and Karen, have grown to be such kind, funny  enterprising, creative young women. They pitch in and they support each other in substantive ways. Their mom, Kathy would be pleased to see them in action, surrounded by loving partners and friends. 

Greer is busy as a honeybee; she scoots about, holding a stuffed Micky in each small fist, focused and intentional as she fetches a third Micky from inside a tepee. When she catches a rolling yellow ball, she quietly squeals her delight. Low-key, yet energetic, she makes her way to a small ladder in the kitchen where she pulls herself up to a standing position. She bounces gleefully, up and down in place.

Later, she will applaud herself, clapping her tiny hands together because she remembers or doesn’t remember this feat. She is so pleased. Pleased much of the time, she is a delicious  piece of pleasantness.

She is passed with reverence, among the women in her world: her supremely competent multitasking mom; her dedicated grandma Maryanne, whose daughters Meghan and Erin delight in their contented niece; her great aunt Maureen, who fills the room with her big heart and keen mind; her cousin, Stephanie, Mo’s sweet and smart daughter, who scooted down the green hillside in Vermont, much in the same way that Greer now moves; and the bubbly 80-year old cousins, Margaret and Theresa, who still speak with lovely lilting  Irish brogues, even though they emigrated from Leitrim as teenagers.

Celebrating  Level 1, her first year,  Greer, carried amongst partygoers, takes in the crowd with poise and equanimity. Her big brother Nolan Stanley, entering Level 4, a whip-smart and willful guy, plays with the rough and tumble boys he loves from across the street. He manages to navigate all the excitement, sometimes taking a moment alone, or touching in with his reassuring mom and dad as he approaches melt down.

At night I read to Nolan in bed as he gently touches my curls. We both appreciate a good book. 

At his birthday breakfast the next morning when he turned his head, his profile reminded me of his Grandfather Stan, Kathy’s husband. Stan the Man also left the planet before he could meet his grandkids. I miss my steadfast brother-in-law, whom I called my beloved unlikely friend. Nolan is so fortunate to have such a devoted dad, Ryan, and a wonderfully patient grandfather Rich, to help him become a good man.

This family has endured huge losses and has enjoyed enormous love. When I am surrounded by the Keaney women, by my wife, her sister, our nieces, now our great-niece, I appreciate all the intelligence, creativity, humor, and kindness possessed by these women, who all share the same rare mitochondrial maternal DNA, Haplogroup X1. Their capacity for happiness and sadness, their strength and goodness of being, their connectedness, their perseverance, and ability to enjoy a good laugh inspires me.

One afternoon, I watched in amused horror as Nolan generously spit into his hands and rubbed a mess of saliva into his hair announcing that he was using “Spit Gel.”  “Where did you learn this? You use only a little spit and even that is disgusting,” I opine. He is unfazed, not a hair out of place.  

When his Aunt Katie arrived for breakfast wearing a lovely off the shoulder black and bright flowered print dress, he asked, “Why are you naked?”  This kid is going to be something, I think.

Three generations, I don’t know where the time goes; I came to New Jersey over thirty years ago for the christening of Patricia’s middle niece, Kaitlin. When a priest asked Pat, the godmother, to renounce Satan at the ceremony, I looked at her in utter dismay.  What kind of mishugenah question was that?  

Now here we  are, attending a party for the new generation. How can this be? But I am comforted by this clan — the continuity, the flow of it all, the recognition of my dear departed relatives in the shiny faces of Greer and Nolan.  Stan and Kathy did good. 

Reunion Redux

Last night, I got revved up after two hours of conversing with Beth to whom I last spoke when I was about 15 years old.  Back then in the suburbs of Denver, in a tightly knit Jewish community, her  family curiously mirrored mine. She had an exceptionally kind Jewish pharmacist dad (who she described as having saved  her life...ditto) and a smart crazy mom who was as harsh, controlling, and unfiltered as my mother.  Beth was one of my older sister’s frenemies, and I always liked and admired her, especially her intelligence.   

Recently, I have been reconnecting with people from my past and these encounters have blown me away by their richness and resonance. I am energized by lively exchanges with my complicated and self aware Jewish peers.  I like learning about their life trajectories and marvel at how unchanged they are,  and also how consistent I am — still the creative intellectual queer funny hippy athlete that Beth and others remember me as being. 

My friends’ lives have turned out to be well lived, not always easy, after all, our Ashkenazi genes have occasionally brought us to our knees; high achievers, anxious and intense, we all keep moving forward with our critical and questioning minds. 

I love hurtling into the present without missing a beat — because what connected us back then somehow connects us now. I feel fluid and light as a time traveler, vibrating with a feeling of authenticity and continuity. Time compresses, converges, and expands in these conversations that cover so much ground; yet we plant ourselves in the soil of what matters  most to us— our families; our work; our passions. 

Maybe this is a bonus of growing old, to have the time to engage in the  art of reflective connection. My dad modeled this magnificently. He used to pick up the phone, talk deeply to his childhood friend Al, or his college roommate Hank, or the ex-detective Rick, he played tennis with in his early 50’s. He held his people close over his lifetime.  He always asked me who I stayed in touch with, implying that I would greatly benefit from doing so. He was right. 

Beth, a MIT educated Radiologist, it turns out, lives in the South Bay with her Ophlamologist Pickle ball playing husband of thirty five years.  (Since I have  just taken up the sport myself  I hope to wrangle an invitation to play on their court — yes,  oddly enough they have one). She has 3 grown kids who have challenged her considerably but now that their brains have developed  they seem to doing quite well.  She just sold her medical practice, works part time because she loves doctoring, and hikes, bikes, and travels. When she tells me that she still loves to ski, I tell her we are definitely going! She wants to write a few books, one about choosing medical professionals and the other a memoir.  I talk about my writing practice and coaching and encourage her to make time for writing as I sense that this woman has some great stories to publish.

“Even now when I see my mother she tells me that I look horrible with no makeup and she wants to drag me into Nordstrom’s to buy decent clothes. She is profoundly disappointed in me,” Beth confides. “Oh Beth, I’m sorry, “ I say. “My mom’s dementia in many ways made her nicer, but she was so mean and judgmental. Clearly, none of her daughters met her expectations. Oh well. Not our problem.”

We laugh, intimate with this brand of inflicted damage,  and we agree to share mother/daughter, and pharmacist father stories when we get together, which I hope will be soon.

“There was a pill in my family for everything,” Beth remembered and I told her about the huge garbage bags full of drugs we removed from my parent’s house when my dad died.  And then we were off talking for another half hour.  Honestly, I don’t know how we managed to get off the phone call. 

A New Prayer

"Pray for acceptance,” Dr. Harley, my new naturopath suggested, as she handed me a bottle of Hawthorne, an herbal remedy that uplifts and strengthens both the physical and emotional heart.

After managing a major crisis with my mother this month, when she was mercilessly thrown out of the Memory care facility where she’s lived the last couple of years, and sent without my consent to Marin General, where she was pumped full of Haldol for two and a half days until I could get her discharged (she only had a mild cold), my blood pressure soared; at night, for the next week, my broken heart would not stop racing.  

My mom has been on a difficult dementia journey for almost a decade. A blunt, judgmental, and tough-minded woman, she's become gentler as her dementia has progressed. Recently, however, in her fear and confusion, she’s gotten aggressive towards her caregivers and peers. This isn’t unusual for dementia folks, it’s just a lot to handle. Many corporate-owned Senior facilities appear to be more inclined to either drug or remove problematic individuals rather than attend to their needs. Time is money, and mercy is in short supply.

“Shirley was always such a live wire,” Rita, one of her Gary, Indiana friends from the way back machine, reminded me when she called my cell phone the other morning, concerned that my mom’s landline had been disconnected.

“I moved my mom to Shalom House,” I explained. “It’s a smaller home near to my house.” This peaceful place is run by Pilar de Olave, a compassionate and smart Sephardic Jewish woman, who has 25 years experience caring for adults with dementia including her own mother. 

Shalom House is situated in a sweet neighborhood built in the 1950’s in Terra Linda, near the Montessori pre-school where I brought my daughter Sophie when she was three. In those days I used to marvel at how Sophie’s magnificent brain rapidly developed.  With glee, I accompanied her on this delightful ride as her neurons formed new pathways while she played and sang and learned each day, becoming more and more herself.  Conversely, as helpless as a passenger in a car wreck, I have watched my mom’s brain deteriorate. Instead of becoming, she has come undone. 

Just when I think it can’t get worse, it does. Years ago, my mom stopped doing her crossword and acrostic puzzles and reading novels; she discontinued past times like playing mahjong, bridge, and computer games. Once extremely competent running her own pharmacy business, as well as our household, I took over as her executive function failed,  She would call me on the phone, as many as 40 times a day, demanding to know what she should do next.

She lost the ability to think, learn, reason, and pay attention.  Short term memory, then long term memory abandoned her. Now, in what I hope is the final stage of this cruel demise, she is having difficulty walking and feeding herself, as the signals no longer travel from her brain to her body. She sits listing slightly to the left, and vacantly stares, her lovely blue eyes clouded over.  

Today, on my way over to Shalom House I listened to an interview with Scott Galloway, a former investment banker/entrepreneur who has written a book called “The Algebra of Happiness.”  He mentioned that caregivers live longer than any other professionals. 

I smiled as I shared this information with my mom’s attendants, Pilar, Maria, and Betty. My mom and I sat together at the dining room table and completed a puzzle for toddlers. I placed each piece, and she pressed it down with her trembling hands. “We do good work,” I noted.  “We’re a team.”  

 “Do you pray?” Dr. Harley asked me. I nodded in affirmation.  “Pray for acceptance.”

On Sunday, mother’s day, my mom, a willful Taurus, who I would never describe as easy going, turns 90. When I tell her that her grandchildren Sophie and Zak will be home from college to celebrate her birthday she lights up. “Can you believe that you will be 90?” I say. “No,” she responds. “How old do you think you are?” I ask.  “Twelve,” she responds.  “Just kidding,” she clarifies.  Remarkably, her sense of humor, as well as the lyrics to her favorite Frank Sinatra tunes, still remain somewhat intact. 

“These are not dementia patients, they are people, adults who happen to have a disease,” Pilar says. “We live here with dignity; at Shalom House we are family.”  I feel very grateful to have found Shalom House for my mother. My blood pressure registered normal when I visited Dr. Harley yesterday.

I used to pray that my mom would leave the planet soon -- that my dad, dead now for 8 years, would come to pick her up.  And every so often she turns to us and says, “Sid will be here in a few minutes. He’s just around the corner.”   I sure hope so. But in the meantime I will shift my focus, and do as Dr. Harley prescribes. I will pray for acceptance.

Fly Me to the Moon

Coloring

It’s late afternoon, and I’m sitting at the dining room table with my mom, coloring in our adult coloring books. 

“We’re really losing it,” my mom teases me, when we start in on this activity, formerly reserved for young children at restaurants, not women over 60.  “Nah, ma, it’s supposed to be good for our brains,” I tell her.

Eager to see if the act of coloring could promote mindfulness and induce a meditative state, I scored us some coloring books and sets of beautiful crayon pencils. This year in the U.S., people purchased 12 million adult coloring books with themes ranging from stress relieving geometric patterns to animal designs to expansive doodles of landscapes, forests, and gardens.  It’s a full blown “thing.”

Coloring involves both logic (by picking up a color for a specific shape or pattern we activate the brain’s analytic part) and creativity (by choosing, mixing, and matching colors we exercise our creative side).  It stimulates areas of the cerebral cortex that control our vision, coordination, and fine motor skills. It helps us “de-concentrate,” reduces anxiety, and quiets the chatter of our noisy minds.

As my mom selects shades of green and blue and purple to color a picture of a fish swimming in a coral reef, and I use orange, red, fuchsia, and yellow crayons to fill in a complex mandala, we listen to the Pandora playlist of Frank Sinatra tunes on the iPad.

“You make me feel so young

You make me feel so spring has sprung

And every time I see you grin

I'm such a happy individual.”

She sings out that last line, “I’m such a happy in-di-vid-ual” right along with Frank, and it occurs to me that in the moment, she is happy, and that she, miraculously, is remembering all the lyrics to the songs we hear.

Her memory is failing fast, with her ability to communicate in such decline that often I have no clue what she is trying to tell me; yet here she sits, across from me, bypassing her medial temporal lobe and activating the left side of her brain to come up with every single word.  Musical processing requires no cognitive function.

“Unforgettable 

In every way, 

And forever more 

That's how you'll stay. 

That's why, darling, it's incredible 

That someone so unforgettable 

Thinks that I am 

Unforgettable, too”

“Way, stay.” “Incredible, unforgettable.” Rhythm, rhyme, and melody provide structure and order, forming reinforceable patterns that transcend ordinary speech. Music facilitates the return of lost brain functions and revives timing mechanisms, word-finding ability, recognition memory, and even some short-term memory. 

“Fly me to the moon

Let me play among the stars

Let me see what spring is like

On a-Jupiter and Mars

In other words, hold my hand

In other words, baby, kiss me”

She repeats the lyrics, so pleased with herself. She knows the words.  She knows she knows the words. Yes!

I am frequently at a loss for what to do with my mom, as she is with herself.  I get calls at 7:00 a.m. from her, asking me “what am I supposed to do?” “Just do your day, Mom,” I reassure her, “Get dressed, you’ll go down for breakfast, then go to exercise class, and then have lunch.” 

Spaced-out, vacant, there and not there, these are ways I would describe the woman I previously knew as intelligent, intense, and judgmental.  My mom had difficulty being present for me in my life; and now, towards the end of hers, in her almost childlike way, she demands my presence.

Psychologists talk about the ambiguous loss one experiences when a family member suffers from dementia. Physical presence and psychological absence.  My ninja therapist tells me that I should add another “a” word – ambivalent.  I am experiencing ambivalent, ambiguous loss.   Some days in my unresolved grief, I think, just get me the hell outta here, please just fly me to the moon.

But despair lifts, as we sit together today, coloring and listening to the music. Coloring connects us to our inner child and does seem to help break negative thinking patterns. It lets us tap into unconditional love.  As the neurologist Oliver Sachs noted, “Music evokes emotion, and emotion can bring with it memory…it brings back the feeling of life when nothing else can.” 

“Love is all that I can give to you

Love is more than just a game for two

Two in love can make it

Take my heart and please don't break it

Love was made for me and you.”