Category Archives: A-Z 2015

You have not loved someone until you make love all night to “Nights in White Satin,” the Moody Blues’ song; until you read pages of truth to each other from the great classic writings; until you spontaneously drink long and deep from each other’s eyes; until you awaken in the night, lips wet from a dream kiss. This passage is an ode to a friend. I wrote this on July 14, 2012.

I saw the leaves beginning to change color as I gazed upon the trees lining the road stretching ahead, when at my age, 60, I began caring for Emma. I faced then my barren chances to encounter amid the fallen leaves of my life this kind of love again.

Shuffling through the dry leaves littering the ground, I discover that when I lift out and let the wind carry away the passion, the pain and the pleasure, what I am left with is unconditional  love, that pure love; it appears before me and all around me as existing in white light.

So it happened in autumn 2001 that the love aspect of passion and pleasure (and pain) that I might see in my future turned to another aspect of love, that of caregiving.

An aspect of caregiving for someone with dementia is dealing with healthcare agencies and aides who act demented. They’d show up just to collect a paycheck.  Sometimes they didn’t show up. They took control, disregarding my wishes.

It wasn’t all about them. And it wasn’t all about me. It was about Emma; it was about preserving her dignity and respect, about her comfort, about compassion for her condition. And Emma let them know despite her failing state.

What I did then seems like a dream. I reflected on my caregiving role with my hospice chaplain when she visited in July 2012, three months after Emma’s passing. She reminded me of the role I played throughout my lost decade: “You are the Lion at the Gate,” she said. Right. As caregiver, you are too involved giving care to think of that, or of yourself. The Lion at the Gate: I was constantly on guard; I learned to take no prisoners. Sometimes I had to just let go. I learned that, too. I had faith and trust.

Throughout my lost decade and beyond, I have spent no nights in white satin; but I’ll always be grateful to those who smoothed my way and Emma’s in her last months:  Daphne, our 30-hour-a-week Attendant Care Services aide (“Oh, was I supposed to give her the Haldol?” when Emma was agitated); and my extraordinary hospice team. Tess, our nurse, and Geri, our social worker, would sit and listen patiently for an hour to my fulminations and then suddenly it all got funny and we’d laugh and laugh.  At the end, my spiritual teacher friend got me through. I don’t know what I would have done without him. But, in between — as our chaplain told me, I had to learn to be the Lion at the Gate.

Now, today, April 14, 2015, spring has come. I have never been much interested in things, but rather in ideas and the beauty of nature surrounding me. On the road stretching ahead, therefore, my aspiration is simple: it is to stay on the path, this spiritual journey, as best I can in my humble way.

Samantha Mozart

In 1960 Emma took in her Aunt Mary, who was 80 and physically declining. Aunt Mary was a kind woman and Emma had spent her summers with her during her childhood and teen years, coming down from West Philadelphia to Aunt Mary’s bungalow, with the little roadside produce stand and the blue hydrangeas beside the wooden steps up to the screened porch, on the little farm across Absecon Bay from Atlantic City. Emma dressed the farm cats in doll clothes and went to the beach with friends and cousins, where one year she got an awful sunburn resulting in sun poisoning.

Emma and I were good friends, mostly, but this one evening when I was at her home we had a terrible argument. It was dinnertime. Emma had just gotten home from work at her secretarial job and she and my stepfather were in the kitchen preparing dinner while she also attended to her small kennel of toy poodles she raised and showed, one becoming a champion.

After the argument, I carried Aunt Mary’s dinner in to her. “Don’t fight with your mother,” she said. “Be kind to her. Be kind to your mother.” The compassion in her gentle tone touched me heart. “Always be kind to your mother. Otherwise you may regret it someday.”

Emma’s love for the sand, surf and the regenerating pine and salt air of the Southern New Jersey shore never ebbed, and she bought a summer home right on the beach in Avalon, south of Atlantic City. To this day, her family — children and grandchildren — and her friends (those still living), whom she hosted over weekends, cooking all the meals herself, reminisce about the Avalon house and the fun times we had there.



You could take long, meditative walks on the Avalon beach.

After Emma and I moved into our Victorian home in central Delaware in 2002, I continued to work, at a hair salon and writing newspaper and magazine feature stories. One night I came home and she said, “There’s something going on out there. Something’s wrong. I’ve been looking out the back window upstairs and the sky’s all red. What’s happening?”

“It’s just the lights of the stores over on the main road reflecting off the clouds,” I explained, though she wasn’t totally reassured.

Soon after that, I asked her why she didn’t finish her daily newspaper crossword puzzle. She said, “Oh, I don’t know. I just didn’t feel like it.”

Some evenings I worked in the hair salon until seven or seven thirty. I would tell Emma in the morning that I’d be late coming home. By 2007, she’d greet me angrily as I came in. “Where have you been? Why don’t you think of me, waiting here alone for you?” It was just she and her sweet,  blue, teacup poodle, Jetta, sitting on the loveseat in the living room, waiting.

She still played her electronic organ, with the control panel, all lit up, bearing a grand resemblance to an airplane cockpit instrument panel. She read the sheet music. She had played piano most of her life, teaching it before she married, and she taught me.

I quit my hair salon job, as soon as I reached 65 and could collect Social Security; Emma needed someone with her fulltime. I continued writing, though.

Around then, for her birthday, I bought Emma a sketch pad so she could keep painting her watercolors that she framed and exhibited all around the house and had painted as gifts for friends; she painted a red rose for me.

One day she sat in the chaise lounge in the corner between the windows in her studio upstairs and began a sketch of a woman’s head. She laid down the pad and pencil and never returned to the sketch. That was her last drawing.

Story and Avalon, N.J., photos by Samantha Mozart

2012, Wednesday afternoon, April 11: Emma is gone. We rejoice that she is released from her long suffering. Today, April 11, 2015, marks the third anniversary of Emma’s passing.

She passed peacefully. Her Hospice nurse, hospice chaplain and I stood by her side at her hospital bed in our living room. Her hospice chaplain played a short, soft piece on Emma’s electronic organ; Emma stirred in recognition. Then, moments before Emma passed, our hospice chaplain touched the center of Emma’s forehead with frankincense and myrrh oil that she had brought from Israel. I touched Emma’s shoulder and laid my hand on hers. Our loving thoughts were of comfort and peace, to ease her along her way, to let her know she is OK, to offer her clear and free choice of passage through her journey and to her next lifetime.

Two days later, my spiritual teacher friend came and sat with me. He told me that Emma is aware that she is out of her body now and in a strange new place, like a dream state, the bardo, the Tibetan Buddhists call it, which may make her feel a bit uncomfortable. My friend said that when our consciousness enters this new place we are given choices as to where to go next; we tend to gravitate toward the familiar.

Emma loved to travel and during this time, she had been here with us, her family. Beginning about three weeks before Emma’s passing, I sensed her former, sunny smiling self around me when I was upstairs. Strange, I thought. She’s down in the living room in the hospital bed, yet she is here. She is beginning to leave her physical form, I reckoned. My brother later told me that during that time, he, too, down in North Carolina, had sensed her presence.

After her passing I sensed Emma’s presence again here in our house in Delaware as did my daughter, Kellie, down in North Carolina. Kellie, having fallen asleep beside my younger granddaughter, awakened around three in the morning to see a white light, an orb, dance in a partial figure eight in the room and then vanish. Then their chihuahua, in my older granddaughter’s bedroom, barked briefly. The next morning, in their car on their way to the school bus, my younger granddaughter, 8, sitting next to Kellie, looked behind her, then turning to Kellie, said, “Mom … who’s that woman sitting in the back seat?” When she turned to look back again, the woman was gone. “She looked like Grandmom,” said my granddaughter. “She was dressed in blue.”

The burial outfit I had chosen for Emma is blue. My granddaughter did not know this.

Even at Emma’s funeral, “She’s not here,” I thought. “She’s just not here.” My brother and Kellie sensed her absence, too. And, so, like a butterfly, she had flitted among each of us in her family, the flowers of her life – her children and her grandchildren – to see what we were up to and to make sure we were all right and then gone on her way, true to her character.

And, so, Emma, peaceful travels. May you, our mother in this lifetime, journey safely and with love. We miss you.

—Samantha Mozart

Emma grasped her cereal bowl by the handle and tilted it filled with Cheerios, blueberries and sliced banana: “What are you doing?” I asked. “I want to pour milk on the ceiling,” she said. Well, don’t we all.

That was Emma, my mother, in November 2009, in the middle stages of dementia. That was when she had trouble getting the right words out, when, as I approached her to guide her with her walker,  she admonished me, “Get out of my whale!”

“Are you doing this on purpose?” I wanted to ask her. Well, of course she is. Why else would this be happening? What is her intention? Or, well, maybe she isn’t doing it on purpose; she isn’t a child whom I can correct and she’ll remember next time and do it right. No, she is in the process of reversal; her brain cells are dying.

She’d run upstairs after I’d get her all settled on the loveseat in the living room. Well, she didn’t run, but she got a good grip on the balusters and managed. I’d find her sitting on her straight back chair in her bedroom or undressed and in bed. It was warmer up there in the winter, and she was always cold. She always found a way. She never lost her ingenuity.

Her hospice doctor explained to me that while certain aspects of the condition are common to all dementia sufferers, other aspects are unique to the individual based on that person’s background and experiences.

Over the recent years we went through a troupe of juggling circus clowns in white coats, dressed up as doctors, but unable to maintain accurate records and unwilling to take the time to answer my questions regarding Emma’s condition.

So in March 2010 when the hospice doctor called to make an appointment for his first visit with us, he wanted to come at dinnertime. I told him he couldn’t, that it would throw Emma’s schedule all off, that she would be eating dinner too late, therefore, consequently be too tired to eat. “People with dementia need to be kept on their schedules. You’re a doctor; you ought to know that,” I told him.

He had to work at the hospital until five and Medicare required his visit, so we compromised.

When the doorbell rang I was in the kitchen with the oven door open, holding a pat of butter in my fingers basting a turkey breast and Emma had just escaped upstairs.

I got to the front door and opened it. He introduced himself, greeting me professionally and respectfully, handing me his card. I, in turn, without offering him a seat or to take his coat, told him that I had to go get Emma: “I don’t have time to cook dinner, chase after Emma, and chase you, too,” I said, half noting that he was of Indian heritage and rather good looking.

He sat with equanimity in the blue chair in the living room until I brought Emma downstairs. He then went over to her on the loveseat, pulled up a footstool, sat down beside her, greeted her softly, asked her how she felt and talked with her a few minutes. Then, he turned to me, listened to me and patiently answered my questions. Had he carried a flute rather than a stethoscope, I would have thought he was Lord Krishna.

From there on, he consistently conducted himself in this manner, no matter the measure of chaos around us.

Said Tess, our hospice nurse, “He doesn’t add to the stress; he moves through it.”

Samantha Mozart

In the beginning — for although we had reached the end of Emma’s life, it was a new beginning for us both — I based my decision to stay in Delaware partly because my brother lived nearby and said he would help. This was in 2001. But, he became involved caring for his mother-in-law, who lived with him and his wife. And, later, he retired and moved to North Carolina. So, it was just me.

In the 1950s, my Nana, Emma’s mother, suffered an incapacitating stroke. Emma put Nana in a nursing home. At the end of a visit one day, we said goodbye to Nana, and as we walked away, she called, “Don’t leave me.  Don’t leave me! Oh, please don’t leave me,” and she cried. This memory springs into the spotlight of my mind, recurrently, upstaging others of my thoughts, as if it happened yesterday. Having heard horror stories of nursing homes, I could not, in good conscience, stash Emma in a nursing home and walk away. What if it were me?

So, on the urging of a friend,  I began seeking in-home help. Finding someone took endless months. Agencies didn’t return my calls. We needed to qualify for Medicaid, since Emma had spent all her money, thinking she would die at 72 as her mother had. But Emma was already 92. Finally, in 2008, we qualified and I got Respite Care five hours a week. That was something. The aide could come in and bathe and feed Emma.

For more than a year I tried to get Attendant Care Services, funded by the state through a Medicaid grant. We were put on a list and had to wait until someone died. We were number 16. Then, in August 2012, the state reallocated those funds and we got the service — 30 hours a week. That’s when our wonderful aide Daphne arrived on the scene.

Earlier, in 2009, we had finally qualified for hospice, so we had a hospice healthcare aide a few hours a week in addition to the Respite Care aide; they alternated weekdays. Weekends I was on my own. But, if an emergency arose, I could call hospice and a nurse would come. Emergencies only arose in the middle of the night, naturally, and that’s when I met Nurse Marge.

“How can you be so bright and cheery at this hour?” I asked her. “Oh, hon,” she said, “I’ve been working nights for years.” So, she proceeded to show me how to turn Emma in bed and change her clothes and her bedding. It was 3 a.m. I got the  picture and walked away. “You’re not done yet,” said Nurse Marge. Oh. I couldn’t escape. She helped me do the whole thing. Nonetheless, I never did succeed in being able to turn Emma in bed and change her clothes. I’d get her clothes and the bedclothes all bunched up around her shoulders.

Nighttime emergencies were many, Nurse Marge would come, even if we had to wait an hour or so: “I just had to pronounce someone,” she’d say on those occasions.

At Emma’s funeral in April 2012, one of the things that deeply touched me was Nurse Marge’s showing up at the cemetery. “But, it’s daytime,” I said. “When will you sleep?” “Oh, it’s my day off,” she said.

Samantha Mozart

July 3, 2011: Emma parks her walker in the usual spot for breakfast, in the dining room to the left of the credenza behind her dining chair at the head of the table, and instead of turning to her chair, overshoots the dining table and heads for the corner. After much coaxing, I redirect her. On her way back, grasping the credenza, she grabs the candelabra and then the candlestick holders. At least she doesn’t bean me with one. She’s so afraid she’ll fall, she grabs onto everything in reach – bed quilts, candelabra, doorjambs…. Kind of like building your house on sand – nothing that will hold.

“No. No! NO!” I’m saying, trying to get her to put down the candelabra and hold onto the credenza until she makes it back to her chair. I look up. The windows are open. Oh. What will my next-door neighbors 25 feet away think?

Emma is hard of hearing and belligerent. She thinks she knows best. And, true, sometimes she does, but she has reached the dementia stage of aphasia: she can’t communicate her reasons: I learn the reason later. But, most of the time, she only thinks she knows best – and she tells me about it, vis-à-vis, “I’ll have you fired!” One could only hope. “Keep your fingers off me.” “You leave my walker alone!” She can talk when she wants to. Thank goodness that kind of talk doesn’t happen often. Although, now, she’s become combative at times. I’ve learned to stand back so when she swings, she won’t hit me. She sits in her chair next to the bed and grasps her bedpost with that firm grip only women of her generation can (accustomed to kneading dough, flattening it out with a rolling pin, rubbing laundry against a washboard, wielding a laundry iron made of iron, scrubbing the kitchen floor on hands and knees with a scrub brush, to name a few routine activities), so that her healthcare aides and I cannot get her arm into or out of her shirt. I try to pry her hand off the post and she swings at me. She is kinder to the aides.

She shreds her napkins at each meal, a phenomenon common to dementia patients, I’ve been told. At least she eats. I’ve been told that many dementia patients are more combative than Emma and ultimately, they stop eating as their bodies shut down. In the end that is what happened to Emma.

However, around this time of the candelabra incident, a nurse told me not to force her to eat. Don’t worry about it, she told me kindly; she’ll eat what she needs. She doesn’t need to eat any more than that. And, in the last few months of Emma’s life, when she ate very little, her hospice doctor told me that it’s the body’s natural protection not to eat much when it is shutting down, as Emma’s was; that if she ate too much, the body would be overwhelmed.

Samantha Mozart

Emma is standing at the kitchen sink doing the dinner dishes. I am upstairs in my writing studio, the room above the kitchen. I hear a PHLUMP. Then, silence. Alarmed, naturally, I descend the back stairs from my studio into the kitchen. I find Emma crawling around on the floor across the room from the sink, over by the powder room. She is trying to find something to hold onto to pull herself up, a chair, probably.

“What happened?!” I ask, bringing a chair and helping her up.

“I don’t know,” she says.

“Were you standing at the sink and you got dizzy and fell?”

“I don’t know.” She simply doesn’t remember. One moment she is standing at the sink, the next she is on the floor.

The fall in the kitchen in 2005 was her first. In succeeding falls, she experienced moments of insensibility, where she would be down and unresponsive, her eyes glazed over. I’d look into her eyes and call her, “Mother.  Mother!” It was frightening. Each time, I thought this might be the end. I’d lift her and prop her up so she sat against the wall until, after about three minutes, she regained her sensibilities. Then I’d run to a neighbor, once getting one down off his roof, to help me pick her up.

Her first major fall happened when I was helping her get out of the tub and she folded up and got wedged on the tile floor between the side of the tub and the front of the toilet. It was her birthday. Her legs and an arm were bent at odd angles. She could not get up on her own and I could not get her up. So I ran next door hoping to get my neighbor. She is strong, experienced at this. She knows what to do. But she wasn’t home. Her younger brother, in his early 40s, came instead. We wrapped her in her robe, helped her into her room, he left and I dressed her.

By 2007, she was making her way around the house by grabbing onto furniture. She fell and hurt her arm. She couldn’t climb into her king size bed, then. I had to help her, but I couldn’t lift her. My gardener’s wife helped me that time. She came right over herself, even though she lives 20 minutes away, has six children and it was dinnertime. We got Emma undressed and into bed. After that, I placed a small stepstool beside her bed. She used it even though one night, to my surprise, I saw her climb into the other side of the bed without it.

Around then, I had a party, and a woman friend said to me, “You need help. You really need to get help.” I don’t know why I hadn’t thought of it. I thought I couldn’t, I suppose. And it wasn’t easy. After weeks of my calling various healthcare agencies. one responded and sent us a wonderful, caring aide who bought a foot tub for Emma. The aide bathed her, washed her feet, applied body lotion, face cream, Emma’s favorite red lipstick, perfume and jewelry, all of which Emma would have done on her own had she been able. Medicare paid for this help because Emma needed physical therapy after her arm injury. So, this was temporary, for about six weeks. But for a time, I got help five hours a week and Emma got a walker.

Samantha Mozart

May 2011

Emma moves as if through thick soup all the time now. I thought it would pass. Her condition has precipitously declined in the past two weeks. Even with her walker, she steps gingerly and slowly as if she were navigating slick cobbles in a forest brook. She leans heavily on her walker – the kind with two wheels in the front and two legs in the back to which we affixed tennis balls – and drags it when she turns, scrapes it across the wood floor, like fingernails across a chalkboard. I checked the wheels to make sure they were turning freely; they were. I was thinking of adding ball bearings.

Emma’s hospice doctor visited. “She will move more and more slowly,” he predicted, holding a crystal ball on his lap – well, so it would seem, for his prediction pulled into the station on schedule. Her engines were already slow, had moved at that speed of slow for months; she was on a plateau. That’s how it goes. She’ll be the same for a long time and then something happens – no one seems to know what – and she declines: she may fall, or a sudden decline may trigger the fall – it’s the chicken vs. the egg thing. In any event, she is cruising for a fall now, so I have to watch her closely.

She is more confused about what to do next, or which way to turn, which foot to place first. She wants to sit down everywhere. She takes longer to process instructions and actions, if she completes the action at all, if she even receives the impulses.

She is hard of hearing: “Did she hear me?” I wonder. Or, more likely it appears that her brittle and crumbling synapses are taking longer and longer to toss the message across the void, that forest brook, as it were, so the one on the far side can catch it; or perhaps the forest is empty – no birds singing their messages, no nerve impulses, no neurotransmitters released, the synapses have disintegrated. I cannot reach her.

Samantha Mozart

Emma’s apartment was small. I had furniture and belongings in storage. If I were going to stay, we’d need a bigger place. So, we looked for something to buy.

Ultimately, we found a charming 1894 Victorian in the  historic district of a central Delaware town. We bought the house and in August 2002 moved in.

Saturday, December 31, 2011: Gaggles of Strangers –Emma is residing in the hospital bed in our living room. We have hospice now. Since Christmas, Emma has become agitated. Her doctor recommends continuous care, a temporary service limited to the duration needed.  Our beloved hospice nurse, Tess, sets it up for the weekend, while she has the days off. Ron, a loving nurse sits with Emma all day. He holds her hand, talks to her and sings to her. At night, the team from the River Styx arrives. Upstairs in bed, I hear them coming and going, conversing in stage whispers. Not following my specific orders, they take control of our house. I am ready to hand them the monthly mortgage bill for payment.

Sunday, January 1: Strangling Gaggles: Emma has become responsive this morning. She has taken her medications and eaten her breakfast. She is calm, resting. In the afternoon a substitute Tess arrives. The nurse does not introduce herself. “Who are you?” I ask. She tells me her name and says she has been here before. “Oh, I’m sorry,” I say. “So many nurses have been through here I don’t remember all their names. “Well, you have your team and you have me visiting,” she replies. “I’m not that stupid,” I counter. She splutters to herself. She wants to cancel the continuous care for Monday. “Tess told me Friday and an administrator confirmed yesterday that Ron would be here through Monday,” I say.

“Well, I’m discontinuing it,” she says.

I tell her I have made plans for Monday. I was going to visit a friend to get some mustard greens, spinach and radishes from their garden – where else could I find fresh local greens in winter in Delaware? I was so excited to be having a rare day out – we’d have lunch with another friend, network about new business marketing ideas, and in the end I’d eat fresh, crisp greens that didn’t taste like they’d resided in the back of a refrigerator for a month.

Nevertheless, this substitute Tess, with the weekend administrators, arbitrarily shredded my plans, overriding Tess and Emma’s doctor’s orders that Tess would make the evaluation Monday whether to cancel the continuous care.

“Who will watch my mother tomorrow morning?” I ask her.

“Get someone to sit with her,” she says flatly. I, the sole caregiver, with no family in the area, have no one to call upon, and Emma’s and my income is such that I can barely afford heating oil this winter. “We’re not a babysitting service,” she adds

“Will you do it?” I ask her.

“I? Why should I do it?” she replies.

“Well, who would you suggest?” I ask.

“Pay a private nursing agency.”

“Are you buying?” I ask.

“Me? Why should I buy?”

I am ushering her out the door.

I grab the phone and sit outside on my front porch. Tears well in my eyes. Now what? I ask myself. Now what?

The phone rings. The voice is my best friend of 40 years, the one who knows me best, from Southern California. “I sensed that all was not well with you and you needed support,” she says. She is caregiver for her mother who also has dementia. Our experiences often match. As happens these days, I am about to step over the edge and someone catches me; this time it is she.

Although, this thought did flit through my mind:

I say to my California friend, “It’s a good thing I don’t have a shotgun, because had I blown that nurse’s head off, it would have made an awful mess all over the rug.”

“Yes, and you would have had to clean it up,” she says.

Exactly.

Then I call my friend with the garden of greens and the deep, raspy voice, to tell her I won’t be able to make it Monday. I relate the shotgun story about having the mess to clean up.

“Ya gotta have a drop cloth,” she says.

Samantha Mozart

Emma, my mother, died when I was born. Having been a vegetarian all her life she said she was therefore a bleeder. So, for three days in September 1941 as I was being born blue with the umbilical cord wrapped around my neck, she was bleeding to death. Family rushed in, transfusions were given. My aunt, Emma’s sister-in-law, fainted. The doctor brought Emma back to life. She forever revered him.

I died in 2001, in October. That’s when my life as I knew it ended; that’s when I as I knew myself ceased existence. That’s when Emma began to lose herself, too. But I didn’t know it yet.

I had lived in Redondo Beach, California, for 30 years, my entire adult life so far, raised my daughter there. Then for the winter of 1995 I decided to go to Naples, Florida, for a working vacation. I could stay with Emma, who owned a villa there. I moved out of my apartment, packing up all my things and putting them into storage. I left my daughter, 27, standing on the curb in Redondo, waving goodbye in my rearview mirror. I would return soon. I drove my little Hyundai solo across country to Florida. I stayed seven years; I liked my job.

In 2000 Emma sold her villa and moved up north to be near her family and friends in Wilmington, Delaware.

I stayed in Florida another year, and then drove north, too, in October 2001, to visit family before heading west and home to California. I boxed up and shipped most of my belongings West. My daughter and I had planned for a big 60th birthday party reunion with all my friends when I returned to California. I arrived in Wilmington at 1 a.m. Emma was waiting up and ready with food for me after my long trip up from the South. Only a mother….

Yet, quickly I saw that she needed help — in Florida, in her early 80s, while I was with her, she had survived a lumpectomy and a mini stroke — and after all, now, she was 87. She couldn’t live alone, and there was no one else but me.

I felt the floor of my chest open and my heart plunge into my stomach.

I had no clothes, not even a winter coat. I pieced together part-time jobs, including one at a department store where with my discount and position to see when clothes went on sale, I could buy clothes for a good price, and another as a freelance features writer for The News-Journal, the Wilmington daily newspaper.

Thus began our decade-long trek through murky tunnels and craggy paths. I stumbled often. Emma simply fell: I ran and got neighbors to help pick her up. I often found no response of help from state and healthcare agencies. There were days when I told healthcare aides to leave and never come back, days when the aides left Emma alone for hours, while I was out, without telling me.

In October 2001 I had chosen to stay in Delaware and care for my mother: my lifestyle and the self I knew ceased to exist thenceforth.

Samantha Mozart

.

Emma’s healthcare aide Daphne came by on Mother’s Day, May 13, 2012, and brought me a card. It is a pretty pink card bearing a message saying in part, “Your love is a rare and beautiful gift and there’s no one who shares it like you.”

Emma had passed away on April 11. We rejoiced that she was finally released from her long suffering, free to explore and tend her beloved flowers in a new garden. Emma loved Daphne, who always made her smile, who tended to her as if she were the rarest flower in the most beautiful garden. Daphne would get Emma out of bed, dress her up, and with the help of her son, 11, create backdrops and sets, take photos of a smiling Emma and put them together in an album for me and our family to cherish. The photos documented Emma’s slow decline; yet even to the end, Emma, who had done some modeling, always knew when her photo was being taken, and smiled.

Daphne told me that the night before Mother’s Day a message flitted into her mind. She felt compelled to write it down. Without pause, she went straight to her room, shut the door, and the words just flowed from her pen onto the small piece of paper. This is the message:

To: The Listeners

I am a new butterfly in heaven town. I will be on the trail checking in on everyone! So now and then I will be by everyone’s side. Just remember Family and Friends are most important. So strive through thick and thin. And when you get down and out just imagine a one of a kind butterfly ever so beautiful. And know that someday you too will get your wings in due time. So the next time you see a butterfly it might just be me flying around to check in on everyone!

Lots of love,
xoxo’s Emma

After Daphne wrote down the message, she tucked it into my card. Then she heard an odd sound. It was a fluttering. She looked up and there fluttering around her light fixture was a small butterfly. Daphne went to the butterfly. It had singed the edge of its wing. She turned off the light. The butterfly landed on Daphne’s index finger, glommed on and wouldn’t let go. Daphne walked around with it. She couldn’t pull it off; she might pull off a wing.

The butterfly held fast to Daphne’s finger just like Emma had held fast to Daphne’s arm, glommed on, when Daphne was turning her in bed. Emma was so afraid she’d fall, even when in bed.

Emma loved her gardens of flowers, especially the roses. And she loved butterflies.  I never realized how much until after her passing. She had a large embroidered canvas of a Monarch butterfly hanging on her bedroom wall. She displayed butterflies as décor all over the house. Even some of her clothing was butterfly print. And one of the watercolors she painted was a Monarch butterfly.

Daphne put the butterfly in a jar giving it air and showed her son. “It’s a moth,” her son said before seeing the winged creature. When he peered into the jar, he saw that it was a small butterfly.

Then Daphne took the butterfly outside and set her free.

Samantha Mozart

“Butterfly” Watercolor by Emma

The many lighted windows of the front cars flash past us like decades, the brakes on the wheels screech to a halt, the doors slide open; here is the train come to take us home.

January 3, 2012, Tuesday:  Emma, my mother, 97, residing in the hospital bed in our living room, has arrived at the final stages of dementia. For a decade, I have been her sole caregiver, unpaid.

Early this morning, before the sun rises, I am awakened. I hear Emma: “How do I get to the subway?” she wants to know. I go downstairs to her. The room is dark but for the weak glow of the night light at the surbase in the adjoining hall.

My imagination shivering in fear at what I will find, I gather around myself my cloak of strength, threadbare now, enter the room and switch on the light.

Emma has thrown off her covers and skewed herself around in bed so that her head is between the rails on one side and her legs through the rails on the other. She is a tiny thing, five feet tall, weighing under 80 pounds. She looks like a holocaust victim. Yet, I have difficulty shifting her. I succeed in dislodging her, finally, straighten her body, pull her down in bed. I cover her up.  I climb the stairs and crawl back into bed. Quiet. Then, “Where is the subway? How do I get home from here? How do I get home from here?” I descend the stairs. She is sitting up, uncovered. “Here: take a drug” is not my normal way out. What should I do? Emma has become agitated again.

Emma grew up in Philadelphia, Pennsylvania, living in her West Philadelphia childhood home until she married in 1939 and lived in the western Philadelphia suburbs. Regularly she donned hat and gloves and rode the elevated train and subway into town where she worked as a secretary, or to shop or meet with friends.

The Atavan waits on the sill between the living room and hallway, waits for me to transport it to her. I have already measured the proper dose into the dropper. All I need to do is administer it. Our healthcare aides have told me that in nursing facilities they tie down agitated patients with duct tape or bungee cords. Scenes from movies of confined, supposedly insane people – mostly women – flash through my mind – old scenes captured in documentaries of patients being given lobotomies suddenly light up, black and white, like a gargoyle on a subway wall when the headlight of the fleeting train flashes on it.

What does Emma see? Where does she think she is? Lost in Philadelphia this time, trying to find her way home. Lately, she has been calling for her mother. It is sad; maybe it is scary for her. She has almost reached the end of the line. What triggers her images? What makes her brain run these thoughts? They must run like a movie trailer.

I pick up the bottle. I unscrew the top holding the dropper. I approach my mother in her bed. I remove the dropper and aim it at her, moving closer. “No,” she says. “No!” She tries to push me away. I gather her wrists in my free hand so she won’t pummel me. She breaks free. “No,” she says. “I don’t want anything to eat.” She compresses her lips. “All you have to do is stick the dropper inside her cheek,” our medical team has said. “The medication is designed to be absorbed into the gums.” O.K., I’ll try again. I collect her wrists. She breaks free. I stand back. I look at her mouth.  I’ve administered medicine from a dropper to dogs and  cats. Surely, administering it to Emma should be easier, especially easier than to cats. I am so bumbling at this; imagine me as your nurse.  I touch her cheek, her mouth, trying to open it. I aim the loaded dropper at it. I get it open. Quick. I get the dropper in and squeeze the bulb. Click! Emma clamps down her teeth on the dropper. I pull out the dropper. I hope it’s made of reinforced material. She does not break it. I place the dropper back into the bottle. Mission accomplished.

Emma continues talking for a while, about an hour. Born in 1914, do you think she would have believed it if someone had told her she would live into 2012? “Can you tell me where the subway is? How do I get home from here? How do I get home?” Now she is quiet.

Samantha Mozart