Dancing with Thanksgiving:
Mom, Alzheimer’s and Dementia D words are powerful: Death. Dance. Drum. Devil. Denial. Dud. Do. Disease. Decide. Do-nut. Drug. I’ve had my share of D’s. Dance, Divinity, Depression stand out. So too death, holy hag, and mom’s dementia.
Mom and I dance the Alzheimer’s Journey on Youtube
I remember when “it” happened. The turkey, gravy, beans, rolls, cranberry, pie, and potatoes overtook my mom. Thanksgiving “how to’s’ became impossible. She both knew and didn’t know what to do next, sort of like a dancer who loses a leg. Her game was way off. Cooking was once her forte.
I watched Mom struggle, not just with meal prep, but the mishmash of interpersonal movements and conversations. My husband, Stephen, a hospice chaplain and the cook at our house, stepped in to help as her nerves frayed.
“How are you doing? I asked her.
“I can’t do it,” she said tearfully. “I just can’t do it anymore.” I knew she wasn’t complaining. She knew.
“Do you want to tell us what is happening?”
She nodded, yes.
I turned off the TV. The in-laws, sisters, mothers, nieces, and husbands turned attention to Mom who sat in her usual place at the end of the couch. “Mom has something to say,” I said.
Our family had not spoken openly about Mom’s disease. She broke the silence. “I can’t do this anymore. It’s too much,” she said, teary but present. In a few words, she summoned the wisdom to tell us that it was time she let go not only of her chief cook role but also that of bringing us together.
It seemed she could tell the implications, the relief, and the loss. I asked, “Do you want our help today?” We had always been careful to “stay out of her kitchen.”
“Yes,” she said, empowered to make this choice. The young girls immediately volunteered, relieved to be of use. An unexpected comradery filled the room. My sister, Valerie, scooted over and held Mom’s hand, sensing the uneasy shift.
Valerie and I reveled in how present Mom had become. Did her disease disable mannerisms that used to inhibit her? While there was deterioration in word sequencing, dressing, cooking, and self-care, Mom’s kinesthetic, social, and visual intelligence was liberated. Alzheimer’s disease opened doors for us to play with Mom as never before. Her emotional “know-how” functioned better than ever. Unlike times past, mom could say what she needed.
For thirty years, Mom and George’s life brimmed with affection, world exploration, and thoughtful, sarcastic reactions to the daily news. Love was the only vow they ever needed. They were never married.
Diagnosed with Alzheimer’s disease, Mom gradually unraveled, but George’s love was steadying. He dignified life by keeping their days simple. Without taking over, he walked the wobbly line between patience and impatience, giving her room to work a little beyond capacity while quietly taking on tasks she could no longer do: cook, drive, shop, pay bills, decide what to order at a restaurant, and what to wear in the morning. His even temper subdued stress and allowed them to flourish at the highest social level possible.
George found a ukulele club where they could enjoy music-making. He played. Mom sang. I expressed so much enthusiasm that George UPS’ed me my own ukulele. Quickly gaining ease, he began to teach everyone around and created the Temecula Valley Ukulele Strummers attracting up to 70 players with subgroups that could perform at fairs and guerilla-style, playing uninvited.
The best uke memory ever was the Thanksgiving he crooned, “Lord, it’s hard to be humble.” It was a set-up to get Mom to dance her sarcastic reaction.
On those visits to see Mom, I’d slip into George’s care bubble. I racked up free ukulele lessons. I drew, wrote a book, answered emails. George and I discussed family history, watched TV, and gave Mom as much love as we could. Each visit Mom lost words and memory, but we’d still venture out to play uke or eat a meal. George was never afraid to take Mom anywhere.
George went on to resurrect Mom’s abandoned family history. While she was able, they traveled to Denver, Topeka, Chicago, Pittsburgh, and New Hampshire where her ancestors lay forgotten in graves. His computer became a fishing net to snag glimpses of her Wentworth lineage in newspaper snippets and historical records.
George started with a shriveled branch and like a master gardener restoried our family tree with roots going back to the Magna Carta. The result was a book, Ten Centuries of Wentworth Family History. I contributed DNA testing for my mom, through the Genome Project and discovered my maternal genetic connection to Ashkenazi Jews. Mom lost her memories, but I gained a fountain of ancestry, something she had considered sad and hopeless.
George didn’t want outside help. I know how “Help” could complicate life. I’ve even heard that unwanted “Help” can feel like an act of aggression.
In the earliest conversations about Mom’s disease, George told me, “I love your Mom so much. I will never leave her.”
I vowed to follow his lead, trusting his instincts. It was a role I could play. Pre-Alzheimer’s Mom and I had talked on the phone every month or two in exchanges that were loving but careful. We skirted topics like divorce, disease, and loss, things we didn’t want to dwell on.
With her demise looming, George nudged me to call more often, telling me how much she appreciated it. I began to make regular phone calls to say, “Hi, I love you.” Tiny shared moments of loving-kindness made it possible for Mom and me to come heart to heart, friend to beloved friend.
George encouraged us each step of the way.
The Best Alzheimer’s Thanks Giving
B.A., Before Alzheimer’s our annual Thanksgiving gathering, was at mom’s home 400 miles south at Lake Elsinore. But 2008 was different. Mom and George came to my house in the bay area.
At the end of the weekend, George encouraged us to go out. Tentative in my role of caregiver, I took Mom to the San Francisco Conservatory of Flowers in Golden Gate Park.
Although it was November, cloudless, seventy-degree weather conjured up a temporary Spring. It was a magnificent day. Mom and I felt like schoolgirls escaping KP duty. We were on our own. I was 53. Mom was 77.
Driving toward the San Francisco bay bridge, we saw a blimp hovering above the Oakland Raiders game, and construction happening on the new bridge span. Mom’s keen eye still grasped the world with enthusiastic curiosity. Pointing, she tried to remember the word for a building that caught her attention.
I laughed, “Today, Mom all we have to do is be in the moment.”
She chuckled and said, “Yes! That’s it.”
Near Treasure Island, I fell back on an old mother-daughter question, “How do you think George is doing?”
“Oh, he’s doing good,” pausing with a smile, “Of course it’s hard for him too.”
I put my hand on hers. Mom held it, and suddenly the trap door to her memories fell open on their rusty hinges.
“I don’t have a family anymore,” she said. “They are all gone. There was Wes and…” She searched for her younger brother’s name.”
“Yes, Carl. But they are all gone.”
“You have me, Mom,” I said dumbly, unable to relate to being orphaned.
“Yes,” she said.
“Look, there’s San Francisco,” I pointed. I didn’t want her to miss the view as we swept by waterfront, skyscrapers, the Golden Gate Bridge and Alcatraz Island, now a seductive prison turned tourist attraction in the middle of the bay. If ever there was an Oz this must be it.
“Yeah,” she said, looking out, “This is a good, good day.”
We exited at Van Ness to avoid traffic, wound past hilly Buena Vista Park and moved along Duboce Avenue towards Golden Gate Park. Mom focused on telling me about the challenge of raising kids and trying to love people.
“I never quite knew how to do it. Did I do, OK? Am I crazy to ask?” she asked, “I just want to know,” she said as she looked at me with bright, watering eyes.
Her vulnerability felt new.
She wasn’t crazy. I was the mom of an 18-year-old whose growing independence. I felt like an empty nester whose child hadn’t flown off. Earlier that day I’d questioned the schools I’d sent her to attend. Should I have been more present, traveled less for work?
“Mom, I’ve always thought of you as a practical, loving person.” Then I paused and added, “Life is hard, isn’t it?” the only consolation I could muster and ridiculously understated.
“This is a good day. It’s just what we need. I’ve worried about it all so much, wondering what I could have done or given to each person to make it better.” Laughing and crying at once, tears ran down her face as she reached into her black nylon purse and pulled from a stock of tissue she always had with her.
Then she focused right on me. “Really, I just want to know that I am loved.” At that moment, I saw the lost child inside Mom round the corner into view.
Something swelled in my throat. I grabbed her hand again. “I understand. I love you.” An unspeakable truth connected between us. She offered me a tissue.
Driving the panhandle of Golden Gate Park, Mom shook her head, telling me that worrying about the past didn’t help. “You just have to put it over there,” she said, gesturing as if to place her worries to the side. “This is what it’s all about, you there, me here.” Her hand danced back and forth between us like a bird between sea and shore.
We marveled as we entered the park. Every Sunday the major traffic artery was blocked to cars, but open for walkers, bikers, and skaters. It never occurred to me that we couldn’t drive right up to the Conservatory of Flowers. Dropping her off was out of the question.
We headed to the Museum of Natural Science parking garage. She dug into her purse for the blue handicap placard. I confirmed that we could take a tram to the conservatory as the parking attendant waved us in.
Mom and I walked out of the garage into bright autumn light. “It’s a good day,” she sang again. We grabbed arms.
A bus driver outside of the new Natural Science Museum pointed us toward the Conservatory. On the lawn, a dad and son tossed a football. When the kid caught it, Mom exclaimed, “Good one!” The dad smiled. I loved seeing Mom so free to interact.
Eyeballing a prominent sculpture of a woman with a conehead, she laughed, “Get that out of here!” flinging her sarcasm at it.
We crossed the boulevard where Lindy Hoppers were dancing in the street. “Ever Lindy Hop, Mom?” thinking of her early days as an award-winning roller skater. She shrugged. Like me, social dancing made her shy.
We noticed another massive sculpture in some bushes. “Let’s go in there,” she said, stepping in the soggy grass in her white Keds. We found Thomas Starr King, founder of the Unitarian Church hidden there and a plaque that read “Courage, Strength, Faith.” Indeed.
When I asked a passerby how far it was to the Conservatory of Flowers, she said it was ten minutes. Mom’s eyes sparked in determination. “Can you do that?” I asked. She’d had more knee surgeries than pieces of pie.
“Of course. Let’s go.”
“We can sit down if you need to.” I offered.
“We can sit down, lay down, stop,” she replied. I laughed, picturing us sprawled out on the grass.
At the next corner, she questioned where we were and if it was the place to turn around. I reminded her that the conservatory was still a block or two further. “Oh, that’s right.”
Feeling nervous, I stopped an oncoming tram, making sure we could catch it on our return.
Finally, the gleaming moon shell of the Conservatory came into view. I recalled Mom’s pride over the potted plants on her patio. She’d nurtured a row of cactus like they were children and took her dinner leftovers to the neighborhood cats as regular caregiving rituals.
“Wait, wait,” I said, orchestrating my camera to take our picture, “Put your head next to mine.”
“Let me see!” she demanded, peering at our faces squished together. With first-day-of-school glee, she exclaimed, “That’s it! That’s a good one. Send me that one.” We hugged.
I bought tickets, and we stepped inside the conservatory. Rainbow light hit massive leaves. Moisture licked us. The scent of clean black dirt, vegetation, and flowers filled our nostrils. “Smell that, Mom?”
We wandered the small, lush rooms. When we swung open the door to the aquatic room, Mom gasped. The intense humidity sent us hurrying out into the Mountain room only to complain of the cold. Two pansies.
Settled ourselves into two redwood chairs, we joined a room full of pots, taking our place among the beautiful arrangements. Two girls passed by on their way to the holiday model train exhibit. Mom waved. Shyly, they waved back as we bathed in a green, living world. In that moment all was well.
Getting hungry for lunch, we headed out. We sat waiting for the bus on a bench where the sun hit us full-on. I joked, “We could use some hats, Mom, got any collapsible hats in there?” She unzipped her black nylon purse, tugged and out came a blue-billed cap. Unbelievable. Always prepared.
The tram pulled up, we boarded and inched up the boulevard at seven miles an hour. Disembarking at the De Young museum, we passed the pulsing mob of Lindy Hoppers and slipped into the museum café. Mom devoured a corned beef on rye. I ate a pear and prosciutto salad. Hundreds of people were dining outside, enjoying the last of this Thanksgiving weekend.
On our way back to the car, Mom reaffirmed, “It’s a good, good day.”
I drove the long way home by the Cliff House. Twenty years before she and I took a picture there.
We rounded past the Veterans Hospital, where I commented, “You used to visit your dad at a VA Hospital, didn’t you?”
“Oh, yes,” remembering her dad in LA.
As I maneuvered along the road to the Palace of Legion of Honor and around Land’s End overlooking the Golden Gate Bridge, she told me how much she loved her father and reminisced about his ability to fix so many things, all except for his alcoholism. “We tried and tried to get that,” she said, “but never could.”
“It’s a terrible disease,” I said.
We drove by the Presidio Pet Cemetery laughing at its memorials to the Fluffy, Goldy, and Butch of the military past.
At the San Francisco marina, she pointed up at a huge kite. Then we turned toward North Beach and peered out at racy strip clubs and Italian cafes before plunging into the financial district and back up onto the bridge to the East Bay. I didn’t want it to end. I grabbed her hand every time I didn’t need it to drive.
Back in Alameda, we came through the condo door feeling victorious. George and my husband asked, “How was your day? Did you have fun?
Mom clutched her arms tight to her chest. A sudden sadness and distance descended. I showed George the Conservatory brochure.
“Is this where you went?” he asked? Mom studied the brochure for a moment and shrugged.
I caught her eyes and said, “We had a good, good day, didn’t we Mom? Mother-daughter bonding.”
She looked at me and smiled.
A gust of fear hit me when George asked me to stay with Mom while he took a five-day trip to be with friends.
Could I reschedule my 30th wedding anniversary trip? Could I take the full weight of Mom’s care? How dependant was she on George? Would his absence throw her into a deeper confusion? Would she leave the house without my knowledge? Would her disorientation increase? Would she get angry and irrational with me? How would she and I handle being alone together for five days with no one else around? Had we ever been alone for that long together as adults?
In spite of anxiety, I changed the dates of my trip and told George, “I can come. My sister Val would come, too.”
I flew into Ontario Airport on a Sunday. George and Mom picked me up. Standing by the kitchen counter, bent over a small list, he walked me through routines for medication, grooming, dressing, food prep, newspaper rituals, TV preferences, and how to make margaritas for happy hour. My sister arrived at 2 pm. He hugged us, got in his red PT cruiser, and was off.
We were on our own. It was going to be OK. Being right with Mom tended to ease my worry. What I didn’t expect was to see Mom’s intelligence rise up and instruct me. Her sense of humor, her spirit, her kinesthetic wisdom and thoughts where intact even when she couldn’t find the right words. It was a privilege to play with her moment to moment. She had a lot to share, a lot to say to me.
Her average day had structure. Get up. Get dressed. Eat breakfast. Read the paper. Move. Eat Lunch. Enjoy a little Happy Hour. Eat Dinner. Sit on the porch and watch birds, clouds, and finally the stars. Eat dessert. Go to bed.
To this structure, I added InterPlay movement, noticing and telling. We tried some arts and crafts, an afternoon pedicure, visits to a store, and evening music.[youtube=http://www.youtube.com/user/CWintonhenry#p/u/33/ICNp0Lh985w]
My big fear was sleeping in the same bed with her. I never dreamed what a gift it would be. Falling asleep and waking up together, enjoying closeness, giggling, and soft words of affection, Mom and I were girlfriends at a sleepover. I loved my Mom. She loved me.
When George returned, I felt victorious. I had cared for my mother.
George left a message on my phone, something he rarely did. When I called, he told me that in the morning Mom stood in the living room and screamed. He came out of the kitchen to find her in the middle of the living room, white-faced and drained. “I can’t see,” she cried. He checked for stroke symptoms, called the doctor, and then took her to the ER. Mom didn’t want to be there and couldn’t remind herself to be patient. Tests showed nothing, so they went home. Her eyesight came back later that day.
Over the phone, it was clear that George was ready for support. A wave of grief hit. The end of the quiet balance in their couplehood was rolling into shore.
George handed the phone to Mom, and she and I connected. Though her words and ideas were muddled, our love was unmuddled. We said goodbye, and she handed the phone back to George.
Within a few weeks of Alzheimer’s Camp,” her condition had worsened. I was so glad we had camp! I could still make good memories for both of us.
George thought it would be easier for Mom to stay home for Thanksgiving that Fall. He was right. Thanksgiving Day, I sat as close as possible to Mom and noticed my sister do this too as if we were trying to crawl into her arms and hold her in our world as long as possible.
A year after the trip to Golden Gate Park, all that remained in our conversations were snatches of coherence mixed with paranoia and whistling giddiness. Mom’s world shrank to playing with Kleenex.
Plentiful, soft, serviceable,
creased, cotton squares,
folded, tucked by hands
ordering her universe
just like she used to do,
a master cosmologist
of needlework, cookery,
laundry, and bills.
She who took care of things,
smiling and raising small
white flags of surrender,
peace offerings, memorials,
gifts to wipe away tears,
clean messes, always prepared.
“When one body suffers, everybody suffers.” Apostle Paul
After Thanksgiving, I grew tense. It took five days for the deep sorrow to surface. The time of change was here. Mom’s personality disappeared around a corner. I couldn’t see her anymore, and I missed her terribly. My heart felt like a vase with a huge rock in it displacing my reserves. I felt drained.
It seemed like my mother’s dementia was the backdrop for everything. Art was a kind of relief hatch for dealing with this.
A friend with bipolar disorder called. I’d witnessed her edge along the precipice of progressing mental illness, losing keys, friends, jobs, sanity. She’d left her credit card at my office. As a result, she couldn’t pay to exit the San Francisco airport parking garage. Rattled about her diagnosis as “gravely disabled,” I went to my office and brought her the card. My husband and I were headed to the city, anyway. Pulling up to United Airlines, I was relieved that she was there. I opened the window, and she reached in for her card and to hug me. As I attempted to open the car door, she jousted a rainbow-colored pencil toward me, purchased with her last quarters, then turned and rushed back into the terminal. I noted that she could still comb her hair.
My husband and I drove into San Francisco for a writing workshop. The weather, like my mood, was dull. The landscape didn’t help. Vacant buildings, a fenced-off cathedral closed for lack of the money to retrofit, sat among mounds of trash littering big empty architectural footprints. It reminded me of urban India. We couldn’t find a bathroom or a friendly place to eat, so we settled for a noisy Starbucks blaring holiday music. In a world too noisy and fast, I drank tea, thinking about mom’s mind and if it resembled the urban decay.
The writing workshop was upstairs at the California Institute of Integral Studies. It felt good to go to a “higher level,” into an orderly room, a sanctuary of consciousness. My mind cleared. Home free, I could focus on art, essay, and craft. For the millionth time, art saved me, granting me solace as I reconfigured chaos into shapes of my own.
Art is my shelter, an interior chapel where I am a care-giver to my own responses. Anything could happen. I might erase it all or throw it in the trash. Impermanent.
My mother, however, is my undying link to love and life. Unable to release her, I created with her in mind. I wrote.
The time came. George was too weary. It was time to sort out a “placement.” It felt like sending a loved one off to college. Was she up to it? In this case, graduation could be death.
During our “rush week,” George, Stephen, and I courted facilities both near George and near me. We had questions. What was the community like? The activities? The care? Would they treat mom with dignity? How current were they on Alzheimer’s care and research?
Open to the possibility that Mom might move to the Bay Area, my heart panged. I welcomed having her close enough to visit. But losing thirty years of “George and Mom” and my connection to their Lake Elsinore home plummeted me into grief.
George called. He said, “I can’t do it. I can’t be that far away from your Mom.” Taking the last English muffin out of the package for her egg “McMuff” breakfast had put him in tears.
It was time to make the decision you hope you’d never make. Like millions of others whose loved-one has Alzheimer’s, we were initiated into a new level of powerlessness.
I was grateful to know how to improvise, to tolerate storms of emotion that are real but impermanent. I was grateful for support, for a creative life where I can reform experiences into beauty, whimsy, and truth in a song, a drawing, a poem, a story, a dance.
George moved decisively. Maundy Thursday, we visited a fifty-bed memory care facility not too far from their home. In the Christian calendar, it was the day to memorize Jesus sharing his last supper and the washing of his disciple’s feet.
My husband and I landed at Ontario Airport. Although George had difficulty getting Mom cleaned up and into the car, they made it. I gave her a big smooch, a smooch she knew.
We headed to their house to wait for my sister Val and her husband to arrive. After a lunch of tuna sandwiches, we went to the…what to call this place? The home? I recalled my first jobs after college. I was an activity director for convalescent care.
The front door of the Corona Memory Care Facility was securely locked to keep residents inside. We buzzed. Lynn, the Activity Director, welcomed us. I noted her name, in case she might be a new “family member.”
She showed us the dining room. It was like a restaurant with small tables for four. We made our way past a soda fountain gathering spot with faux “shops” for pets, flower arranging, childcare, and dressing up.
In the halls, we met residents and peeked in rooms. In a TV room, a man dozed. George walked up to greet him. The staff told us he had started businesses all over California but to be careful because he might spit on us.
We visited the kitchen where residents could sometimes cook and reminisce.
Outside in the garden, a resident worried about when her daughter would arrive. She had been a truck driver and managed to successfully move a few concrete garden benches from one end of the yard to the other.
Room 49 was for mom. It had a small niche outside the door where we could place memorabilia to tell her story.
As we moved about the facility, Mom had a smile on her face. I felt reassured by her openness and the idea of a place customized to her needs, whose philosophy was to “join her on her journey.”
She had lunch with other diners while the rest of us met with Lynn in a small conference room. Lynn told us that once we left Mom, it would be best not to come back for three days, to help her “adjust.” That seemed utterly traumatic and counter-intuitive. The grief and anxiety of “dropping” her off and leaving her for days without connection to family now triggered a sense of foreboding.
We took Mom back home for a Pollo Loco chicken take out dinner. George broke out his ukulele and sang, “Lord, it’s hard to be humble.” Mom improvised with him.
I tried not to say, “This is her last night, last meal, last moment of the life we knew.” I tried to say, “I don’t know what will happen next” and to stay open.
Val and John left. We watched Chet Atkins on TV. I sketched Mom with a black watercolor pencil…everything so temporary.
I began to take photos of her ear, her finger, each detail of her. But, she looked at me like I was crazy, “What are you doing?” her eyes asked. Sheepish, I put my camera away, scolding myself about making Mom an art project, (even though art is how I preserve, memorialize, and love my world.)
I moved next to her on the sofa. The black fringe of my Indian scarf spilled into the space between us. We held hands. She touched the fringe. I didn’t want to let her go.
It was Easter Sunday. We ate Egg McMuffins. George collected Mom’s clothes, a blanket, toiletries, a few figurines, and some photos. We headed for the facility. Christina, the resident care director, greeted us. She sat mom down with some new “friends” at lunch.
Grief surged. Christina shared that her own Mom had dementia. I was grateful that she understood. We went to the car to retrieve bags and boxes of stuff. In Mom’s room, we pushed the bed against the wall so she could “always get out on the right side of the bed.” We put a twin bedspread on it and put her things away. This took fifteen minutes.
As we sat together in the room, Mom’s past came flowing through us, including memories rarely spoken. George mentioned that he added Mom’s name to her mother’s gravestone in Denver along with her first-born child David.
When we went to find Mom she was near the soda fountain area sitting with Brandy, another activity director. People were arriving for a time of games and crosswords, all skills out of reach for Mom.
It was time to say goodbye. Suddenly she was lucid. I saw her struggle. I kissed her and stepped back. George hugged her and said, “I am taking Steve and Cindy to the airport. I’ll be back.
”Yeah, in two years,” she said tightly.
We walked away, but the exit door was locked. Easter?
Asking a poem to help
There is sadness.
Some say it will remain.
Others say it will pass.
She, my comfort departs
as leaving, I let go, standing
neck-deep in unlovely loss
this grief burden of love.
De-part. (Part from)
The Great Detaching. My heart knew it was time to rearrange the cords of connection as I registered my mother’s raw absence. Attachments are physical. They come with groans of fatigue, a tenderness in touching life and death, a painful piercing in the chest, a disquieted instability of a lost anchor, habit or pattern.
I wanted to be carried. My husband drove me to work. Dishes stayed in the sink. Time was different. My back went out.
One thousand spiritual practices don’t make up for the physicality of losing a parent, a job, a home, a kid, a partner.
The prior generation departs, leaving, but somehow not leaving us. The dearly departed continue in memory, skin, heart, earth, heaven, and these imaginal fields of knowing. We re-member them in a strangely different way, wanting to free them to be ancestors, saints, beloveds, guides or silent memorial stones along our walkway. I love the Margorie Allensworth poem that says,
Mourning is not forgetting
It is an undoing
Every minute tie must be untied
and something valuable recovered from the know
Blessed are they who mourn
for they shall be comforted.
Comfort requests a multitude of forms. If we dance, sing, and offer beauty, the body gently refashions sorrow so that a new body can slowly arise.
Mom lived at the Memory Care facility for a month before she got pneumonia. She showed a significant drop in her areas of competence in spite of George spending hours every day with her. One day her temperature rose, and I got the call that she had pneumonia. It didn’t surprise me. She has only been away from home for one month.
George took her to the hospital. I got on a plane and headed south. My sister picked me up at the airport. The disease kept bringing us together.
Was this the end, Mom in bed, confused and small and powerless? They gave her a strong dose of antibiotics and put her on hospice. We decided to take her home.
Her body is not an object
shell or carcass
to haul or coarsely lift.
Her body is love,
the answer to embrace.
His transfer is whole,
suspended in time,
the undying memory
taken up in arms that
raise her up and
bring her home.
Not the end…
It took Alzheimer’s disease to show me Mom’s full creativity as a dancer. The profundity of her artistic abilities laid hidden most of my life. Not until “Alzheimer’s Camp” did her artistry fully appear. A movement conversation unfolded between us, full of choreographic and improvised wisdom. She even started directing me! When the music ended her tears welled up. I’ll never forget the look in her eyes when she said. “Thank you! I’m all here!”
I am convinced that more than body memory was at play when Mom danced. Even if instinct was the only code of memory remaining, it was precious enough. After dancing, I loved how mom spoke at length about how dance works, gesturing to her heart, solar plexus, and her sides. Her passionate responses were clear to me.
Home from the hospital and on hospice, she and I danced again. Weak, hardly eating, her wit still shone. As George nurtured her back to health, we danced again at every opportunity. There is nothing like seeing someone you love “appear” out of the fog of dementia. Dance was a golden thread of presence. Mom finally shared her secret dancing life with me. I was never more grateful to be the daughter of Lurley Katherine Wentworth.
Mom regained strength to inevitably lose it again. The toll on George grew. At the end of April after her 80th birthday, George moved her to Green Tree Villa, a six-person board and care home with the highest quality of care that I can imagine outside of a home. Think comfy five-star hotel with caregivers who think that love is medicine.
By July, walking or eating unassisted were impossible. She began to tilt to the right, due to changes in her brain and falling out of bed.
George visited once or twice a day. The difficulty of loving and losing her hit me again.
Because there are people who care, because there is enough support because each visit I saw her diminish slowly curling up in spite of best efforts and the gleam in her eye, because of all this my heart ached, and unexpectedly heaved with grief as I unbirthed Mom.
Grief asks for no explanations. I tried to trust my body to the unbeauty of letting go. Is not Alzheimer’s disease a master teacher of letting go? It wouldn’t be hard, but for the depths of love. Thankfully love is a life raft. Our songs, dances, and spirits say it best.
Is this the End?
Mom died on February 1, 2012. The Green Tree staff and George midwived her through the last leg of her journey with dignity, love, and affirmation.
George became a contributor to the ongoing household banter. When he brought his ukulele group to play Mom, and the gals would all cut the rug.
When she finally stopped eating, drinking, and getting out of bed, we made our way to her. I was grateful to be in a loving space that was comfortable and comforting. My sister, Val, and George and I spent the last night of her life, sharing two-hour shifts to watch her breath and hold her hand.
She died peacefully. Or, perhaps it was I who was at peace. My heart was tired and sad, but very, very full of love. That is a lucky thing, to make it through a horrendous, debilitating disease with such an enormous well of love.
Life without End?
Memory. Remember and forget. The slow drip of memory loss applies to me too. Who was my Mom? Who am I now? Ten years of illness. Was that my Mom? I clung to her essence right to the end. I remember her essence: feisty, dancerly, loving, challenged.
The process of memorializing evolves in fits and starts. Mom didn’t’ want anything formal. Two days after she died, the family gathered in George’s living room to eat and share words and song. A week later, I gathered friends in my living room in the Bay Area. I needed my immediate community to see and remind me that I am now motherless.
In the following weeks, I created small Mom shrines and collages around my house. I physically mourned and needed rest. I wandered the world, wondering why everyone moved so fast. I embroidered a black ribbon with Lurley Katharine Wentworth to wear around my neck. I bought a skull on a staff. I bought a black “In Mourning” wristband. I called George regularly and visited him in May, to look at pictures and cry.
In July, Valerie and I visited George, divided up pictures and picked out rings and necklaces from Mom’s jewelry box. I did not ask to help at George’s garage sale. I resumed Zumba and began to lose weight, feeling stronger and more relaxed.
Several months after she died, I began to feel my ground of being get watery. My summer schedule intimidated me. I grew, “otherly occupied.” George, Val, and I began preparations to take Mom’s ashes to Denver in October.
If it is possible, I felt one generation leaving as I physicality took my place. In particular, I claimed my mother’s DNA marked with Judaism, though hidden from generations of grandmothers doing their long dance of memory loss.
I am readied, wrapped in a garment woven by efficiency of energy, clarity of vision, courage to love. My guiding light is the pearl of great price upon a staff that will lead me step by step to speak simply and tell my truth.
On a Hospice website, a woman shares help from her Jewish heritage. She said,
I’d like to pass on to you all an eleven-month daily ritual called the Mourner’s Kaddish, which can be said by Jews and non-Jews alike….You can say it alone, in groups, and perhaps at the same time and place every day, maybe out in nature. Believe me it helps me put the whole experience in a larger context of both acceptance, and of celebration. But the one I would like to share today is very accessible, written in English, and is a poetic rendering for the same purpose – to praise G-d for the life that was brought into and lived in this world; it keeps from dwelling so much on the loss and concentrates more on the celebration of this one life and all life, helps me to remember the great cycle through which we all move.
copyright 1999 by Marge Piercy, from THE ART OF BLESSING THE DAY, Alfred A Knopf, publisher
Look around us, search above us, below, behind.
We stand in a great web of being joined together.
Let us praise, let us love the life we are lent
passing through us in the body of Israel
and our own bodies, let’s say amein.Time flows through us like water.
The past and the dead speak through us.
We breathe out our children’s children, blessing.
Blessed is the earth from which we grow,
blessed the life we are lent,
blessed the ones who teach us,
blessed the ones we teach,
blessed is the word that cannot say the glory
that shines through us and remains to shine
flowing past distant suns on the way to forever.
Let’s say amein.Blessed is light, blessed is darkness,
but blessed above all else is peace
which bears the fruits of knowledge
on strong branches, let’s say amein.Peace that bears joy into the world,
peace that enables love, peace over Israel
everywhere, blessed and holy is peace,
let’s say amein.
A Jewish ritual called “sitting shiva” can also be done in a variety of ways and has proven to work over a very long time. The mourner(s) is attended to by neighbors, congregants, friends, anywhere from one evening to seven continuous days, being brought food (preferably round to remind us of the circle of life), fed, taken care of, listened to (tell the stories of the life of the departed), has no other duties like housekeeping, etc. Mute the phones, have someone conduct a brief ceremony or reading that includes the Mourner’s Kaddish. Many people cover their mirrors so as to be able to concentrate on the ritual. These rituals give full and due attention to the needs of mourners and help us give larger meaning to our lives in community.
October 2012, my family traveled to Denver. We placed mom’s ashes alongside her mother, aunt, grandmother and her first little one who died in the fire.
For the back of her headstone, George composed and inscribed these words.
I am the light of early morn, the warmth of summer sun,
The sparkle in a bubbling brook, the still when day is done,
I am the laughter in the wind, the touch of gentle of rain,
A love that holds forever true, until we meet again.
Memorial mums were planted in George’s backyard and became a lavendar field of love the year after mom’s passing.
Our family went to George’s for Thanksgiving. His guidance, love, and generosity continues to gift us as he exemplifies care without rescuing those he loves.