Shirley and the Electronic Collar

About 5 months ago I met a couple on Dillon Beach while walking the dogs. They had three well behaved dogs off leash -- a pitbull mutt,  a terrier mutt. and a border collie. Percy, our Corgi enjoyed chasing a ball with the border collie, and we became dog friends.  

Recently, I noticed that the pit bull mix wore an electric collar so I asked about it. The woman showed me her remote control and explained how the collar worked. She put it on each of my dogs to demonstrate its function, and they both responded to the tone and vibrate prompts like a charm.  Usually, Percy and Sadie selectively listen to me. Sadie is capable of running far away when the moment strikes her, and both dogs are incorrigible when it comes to eating crabs and other beach crap. I decided to order them collars.

Yesterday, I used the new collars and walked the whole expanse of the beach without needing to put them on leash. I wore the remote around my neck, and toggled between dog 1, and dog 2, sending them tones and vibrations when they tried to eat crabs, or started running away.

This morning, confident that I had them under control, I started down the beach.  Sadie took one look at me, then looked away, and suddenly took off.  I sent her a tone, then a vibration, and while she stopped for just a split second, defiant, she ran in the opposite direction.  Percy followed after her, and they ran into the empty beach parking lot, then headed up the hill towards the Dillon Beach store.  

I finally caught up with them, put them back on leash, and returned to the beach, at which point I saw my friend with her dogs.  I explained what had happened, and she encouraged me to keep working with Sadie.  When Sadie headed off on her own or didn’t respond to my voice command, I should send her a signal, making sure she understood that I was in charge, not her.

After the woman, who is a rugged, no nonsense, slightly gruff type in her sixties, instructed me, Percy played with the border collie for a while.  Then Sadie trotted away from us.  “Zap her,” said the woman. I hit the vibrate button; Sadie bolted once again towards the parking lot, fleeing me and the remote control I wore around my neck; this time she headed to the right, on the road towards the campground. The woman helped me chase after her and Percy.

When we finally caught Sadie, roaming in the sand dunes, she was clearly agitated; she looked at me and shook; she wouldn’t even accept a treat.

“Sadie has always been in charge,” the woman observed. “Now you are in control and she is reacting.”  She told me that I was welcome to come to her nearby farm to train Sadie; she has a huge yard enclosed with a fence. “She’ll get it eventually,” she said, noting that little Percy seems to have adapted to the collar quite well.

As we exchanged phone numbers, the woman asked me my name “I’m Shirley,” she told me.  “You’ve got to be kidding me,” I said. “You’re Shirley. My mom, who died this past August, was named Shirley.”

I thanked Shirley for her help and told her I would give her a call, and that I would see her soon on the beach.  

As I resumed my walk, Sadie would not move.  She laid down in the sand, and I had to pull her along.  I detoured off the beach and walked around the neighborhood for the rest of our morning exercise, all the while astounded that my mom, Shirley, had somehow shown up in this battle of wills.

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."

I am Titanium

The Lycra Ligament and Muscle Brigade has been summoned into service to get my arm, wrist, and hand back into shape.

These tiny fierce trainers dress in sleek black Lycra body suits and with calm upbeat voices instruct me in tendon gliding, wrist bending down and back, palm turning, thumb circling, touching the tip of my thumb to the tip of each finger.

Karen, the kind PT at the Hand Physical Therapy Center of Marin, steps me through an exercise routine, taking measurements of my shocking limitations. Who knew all the things a second hand does until it doesn’t. Buttoning, wiping, twisting, opening, chopping, typing, texting, combing out tangles, tying — coming to grips (or a lack there of) with this disability continues to challenge me.

I take my physical abilities and high activity level as a given; this is the most limited I have been from an injury, ever. And the pain is exquisite. Shattering a bone and recovering from surgery has taken my mind off the recent death of my mom. I thought I would be in an altered state, grieving, but not coaxing a dead limb back to life. I had no idea.

I assure Karen that I will take the PT workout seriously though I undermine my credibility when I tell her about the Bone Menders and describe my new partners from the Brigade.

Dr. Hillary Redlln, at our post surgical appointment, talked me through my latest x-ray showing me the titanium plate now embedded in my arm where my radial wrist bone once lived. The spiderlike metal plate gIves me the heebie jeebies and it didn't help matters to glimpse the Frankenstein-esque stitches on my inner wrist.

But Dr. Hillary reported that the Bone Menders had been doing a great job; she gave me a removable black splint, and encouraged me to line up other resources to join my healing team.

In addition to scheduling Hand PT sessions twice a week for the next month, I called Marie Ongaro, my acupuncturist, and she saw me today, summoning the needle bearers and energy movers to do their eastern Magic on my injury.

There’s a lot of work to be done. Swollen and stiff, aching deeply especially at nighttime, this right hand does not feel connected to my body. I am trying to accept this temporary dysfunction, knowing that if listen to my inner helpers and outer healers,  do my exercises and take my vitamins and bone supplements,  it will in six weeks or so be better.

But the day-to-day progress, and the baseline from where I am starting this rehab give me pause. I can’t make a fist, turn my palms to the sky, or bear any weight on the wrist. When the PT told me not to lift anything heavier than a piece of paper, I looked at her like she was nuts.

This weekend as I watched the formidable 37-year-old Serena Williams lose to a Canadian 17-year-old in the finals of the US Open, I thought about recovery and rehab. Serena, with a number of health challenges, including coming back after almost dying giving birth, continues to dominate her world. But the amount of work this woman has put in to recondition her body to play at the top of her game is just extraordinary.

To be sure I am motivated to get my right arm, wrist, and hand back in good working condition so that I can return to two handed keyboarding, cooking, and of course playing Pickleball. I am humbled in the presence of the Lycra Ligament and Muscle Brigade, the Bone Menders, and the Needle Bearers and Energy Movers, as well as my team of female medical professionals.  

And to quote the Sia song, Titanium:

I'm bulletproof, nothing to lose

Fire away, fire away

Ricochet, you take your aim

Fire away, fire away

You shoot me down but I won't fall

I am titanium

You shoot me down but I won't fall

I am titanium

I am titanium

The Bone Menders

I envision a small workforce of Bone Menders,  busy inside my wrist, repairing my shattered radius bone. They dress in white coveralls, and wear  white soft booties. They carry small buckets filled with marrow and cells, and they cheerfully plaster around the silver titanium plate; they fill in fractures in the crevices of bone, using tiny shovels that look like pie spatchulas.

Eccentric little artisans, the Bone Menders like to sing as they work, but often the mean background hum of pain pressure drowns out their voices.  When I tell my wife and daughter about these creatures, which I do at least daily, they both respond, ”And how much CBD did you take today?”.

Granted, I am getting stoned to offset this pain, but this image of the Bone Menders is part of the conscious healing regimen I have launched since my surgery a week ago.

I am taking a bone healing protocol from my naturopath, that includes supplements with names such as osteo5x  (hydrolyzed collagen), and Osteo Minis (some for For Am and pm that contain magnesium, copper, selenium, calcium, and Vitamins D and K and K1. ) I drink down drops of Vitamin  A, B-12s, and D’s, and a dropper full of a brown liquid remedy called Bone Knit.

Hum, I may have to supply my Bone Menders with some knitting needles and yarn.  I am bravely trying to adjust to this surprisingly potent disability and when not in relentless discomfort, relax into my new routines.

I’m drinking cups of bone marrow broth, and trying to eat small meals, to keep my stomach in tact from the medications. I’m monitoring my self pity levels to ensure that I do not plunge off the deep end.

I’m icing, limiting myself to one long walk a day (although not long enough since the Dogsitter does not go as far as I go), and spending not too much time on devices.  

To function in my new little world, I must move much slower, and deliberate first, act second. I’ve been mostly homebound, which thankfully limits my exposure to the entitled people of Marin, whom I find terribly annoying when in a weakened state.

Today an older white man who did not have his scruffy little dog on leash, yelled at Patricia,  my dog walker that ”your dog is a monster!” when Sadie growled and bared her teeth at his approaching dog.

It just took a moment to remediate the situation between the dogs, but the man wouldn’t stop his invective.  “You are just unkind,” I told him as he refused to move on both literally and figuratively. As we walked away I couldn’t help myself. “You are a mean bastard.”

On the other hand,  let’s call it my good hand, my friends have stepped up, coming by to share a meal, and to help me take the dogs out at night. They bring by Special CBD lotion, flowers, cards, and takeout, and provide me with much needed distraction.

But honestly, I’m still shell shocked. It’s been just over  a week since my mom died and I broke my wrist. My routine is disrupted and I am a creature of routine.  i haven’t driven my car, Pat and Soph are in Boston and I’m on my own, no demented mom to worry about or attend to.  But I’m feeling this numb dumb pain in my hand that appears to have a life of its own, even though it is almost completely immobilized in plaster and white mesh.

Still, I meet with my students, editing with one finger, and getting them excited about finding and writing their stories for college applications. I walk the dogs on our street, hyper aware of keeping them under control. Just one lizard, and things could end badly.

It’s exhausting. Today has been my most pain free day. It’s a five. On the morning dog walk we saw the nasty man again. He started up with me and from 20 feet away, I told him i would be happy to talk about our interaction yesterday, but that I didn’t want his negativity. This gave him pause and he finally stopped yelling at me. I ended the encounter by wishing him a good day.

Watching the teenagers play their hearts out at the US Open, I will rest on my sofa, and resume my icing. Gotta keep those Bone Menders well hydrated and busy. They have lots on their platelets.

ThreeThings

They say bad things happen in threes.

First bad thing;10 days ago, Percy, our little corgi, ate a plastic mass that obstructed her small intestine. She had emergency surgery, resulting in a belly incision that runs the length of her long body.

Second bad thing: on Wednesday of last week I fell trying to avoid a pickle ball line drive headed my way. It knocked me off my feet. I put my hand back to catch myself and shattered the radius bone in my wrist into smitherines. I was put into a ridiculously rigid uncomfortable temporary cast that captured my elbow after sobbing for two hours in excruciating pain at the ER with no meds.

Third bad thing: one day later, on Thursday, my mom died after a horrible decline and complicated situation at her board and care home.

I spent the weekend zonked on pain, drugs, and grief. Unable to do the things i usually do to manage stress in my life— walk the dogs and write— I let my wife and daughter take care of me, watching the two loves of my life step up to offer comfort and support.

They did a great job with a difficult to say the least patient. Once the Orthopedic surgeon I visited on Friday told me I couldn’t take CBD with some THC to ease my distress.because of the CBD’s anti-coagulate properties, my mood darkened.

The weekend is a bit of a haze. I spoke to friends and family, trashed my stomach with Advil, joined the opioid crisis by taking hydromorphine that barely seemed to touch my pain, gathered my mother’s things from her place, and cried frequently. The dogs licked my tears and wondered why I was not taking them out on their usual frolics throughout Marin.

Today is Monday, actually now Tuesday, and it is 2 am and I can’t sleep, after returning home from my day spent in outpatient surgery.

My right arm is completely numb from a block the surgeon, a smart Jewish woman from Long Beach with 2 sons who go to our local middle school, instructed the anesthesiologist to put into my IV. The arm and hand feels as dead as my dead mother.

When i got into bed tonight and took the casted arm out of its sling, it flopped away and I panicked. I thought i had lost my arm. Pat thought I was kidding but I was not. “Enough with the loss metaphors,” I text my therapist, using the index finger on my left hand..

Wait, I can still use my left hand! So, does this mean that good things also happen in threes?

First good thing: I can use my dominant left hand. I must be patient with how long the simplest things take me— buttoning my shirt, getting toilet paper from the roll, trying to make food, using my iPhone and computer. There must be something spiritual and good about slowing down but I’m not yet a believer.

Second good thing: i have many people around who love and understand me. My family and friends and support professionals never cease to amaze me with their kindness, resourcefulness, tolerance, insight, and humor. I am used to being in charge, and being extremely competent and efficient, traits I learned from my mother. I do not gracefully accept my disabilities or limitations, and though I feel profoundly grateful for all the help that is coming my way. I’m working on the grace and acceptance parts. I will hug little Sue with love and compassion.

Third good thing: I know that I have been a kind loving daughter to my mother and I have not an ounce of Jewish guilt nor regret.. Because of the dementia and my mother’s unique deficits in the nurturing department, i have been a mo better mother to her than she was to me. But I still love and respect the many facets of her— her intellect, independence, take charge attitude, honesty, sense of humor, willingness to challenge sex role stereotypes, commitment to my dad and our family,

My mom and my relationship with her is complicated and I’ll continue to spend hours in therapy and in my writing unpacking it because I just will. As I look at my daughter, and watch how she has metabolized my example of daughtering and mothering, i know this is all worth the effort.

Sophie returns to Boston tomorrow.. Pat will fly there on Thursday to help her move in to her new studio apartment. I will stay home with the dogs and the dog sitter, who will also keep an eye on me.

I will focus on taking of care of myself and my healing. My bones will mend with a little assistance from a titanium plate newly embedded in my radius. Titanium, is a lustrous silver colored metal that is low density, and high strength. It is resistant to corrosion and is considered a transition chemical. To close with one more metaphor, as I breathe into the pain, this too shall pass.

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.