Category Archives: Dementia Caregiving Journals

May 25, 2012 — I got up the other morning and greeted myself in the bathroom mirror. The t-shirt I had been sleeping in said “RATS.” Then I realized the shirt really said STAR, the name of the groomers who used to groom Jetta, our teacup poodle. So, my day got better.

—Until dinnertime when I reached into the refrigerator and pulled out the bottle of René Barbier Mediterranean White Catalunya to have with my flounder. The bottle must have a leak in it or something, for there remained but a sip. I hadn’t touched that wine since my daughter Kellie was here and my friend Jackie came over. I don’t know what happened…. That was the day we assembled the bookcase and then indulged in piles of crackers, gourmet cheeses, protracted conversation, Kellie’s iPhone Pole Barbie photos and a little wine. (See Chapter LXIX: Pole Barbies.)

I emailed my friend who turned me onto this wine about my situation.

“I think the bottles are defective,” she wrote back. “I have the same problem.”

My friend and her husband own a Chevy S-10 pickup truck, and they have graciously offered to let me use it whenever I need it.

I needed some clothes. My guess is that the shops lining Melrose Avenue in West L. A. are located beyond the fringe of where my friends would have me drive their truck. So I drove to the local mall. That in itself was culture shock: Having been confined to home most of every day caregiving for Emma and without a car, I hadn’t been to the mall in nearly two years.

As I declined brochures and fliers from hands outstretched like toll gates from every kiosk along the way, and stepped from the mall concourse into the perfumed chamber of Victoria’s Secret, a salesgirl popped up in front of me as if magically underwired: “What can I help you find today?” I told her I was looking for a bra. “What size are we wearing?” she asked ebulliently.

“We!” I exclaimed. “I hope it’s not we, but just me!” I was looking for something more substantial than would fit a Pole Barbie body, something, shall we say, for a person who eats. Anyway, they didn’t have anything in my wallet size. I would have found it uplifting, had they. (Couldn’t resist that one.)

Then I tried on some blouses in a department store dressing room. When will department stores stop using garish overhead lighting and funhouse mirrors in their dressing rooms? Next they’ll thoughtfully provide scales. I scanned the upper walls and corners, truly hoping no camera lurked in there. You’d think they’d create an atmosphere to make you actually want to purchase that thing you’re trying on – you know, like candlelight and wine.

On the way home, I stopped at the liquor store to pick up some Catalunya. My friend orders it by the case from this store. The owner was there and he knows me.

“Do you have any Catalunya?” I asked.

“Wait a minute,” he said, and he disappeared into the back room to emerge carrying a bottle of Catalunya. He handed it to me.

“Is that from my friend’s stash?” I asked.

“Yes,” he told me.

“Not only has she graciously lent me her truck,” I told him, “but now I’m using it to dip into her wine stash.”

We laughed. He agreed with my friend and me that the bottles probably do leak. I paid for my wine and left.

I drove home, carried my acquisitions into the house and put them away, stashing the Catalunya in the fridge. Then I drove over to my friend’s place and dropped off the little truck. On the way out I encountered her walking along the sidewalk.

“Thank you so much for lending me your truck,” I said.

“It’s yours to use anytime you need it,” she said.

“Maybe you’ll change your mind when you find out I’ve dipped into your wine stash,” I told her.

“I kno-o-o-w,” she said.

“Oh, you were there right after I was?”

“Yes,” she said.

I can only reflect.

—Samantha Mozart

Saturday, May 19, 2012 — I received an email this morning from Amazon Kindle Direct Publishing congratulating me that my e-book, Salmon Salad and Mozart: A Dementia Caregiver’s Journal, Volume I: Begins the Night Music is published for readers to purchase here.

Sure enough, it’s there. Published a year exactly from the day I started publishing this blog.  If only I could have just clicked my heels and had the book magically finished weeks ago. It happens, though, that after a month of being misled in a dizzying circle trying to get my table of contents to link to the actual contents, an Amazon KDP employee stuck his hand into my book draft saved on the KDP website and tinkered with my html/web page document mutilating my table of contents formatting rendering it unrecognizable. (Pardon the terminology, but I just got done watching The Girl with the Dragon Tattoo, the David Fincher version.) Moreover, he emailed me – the KDP guy, not David Fincher – that he had reformatted my Word document. Where did he get the Word document without downloading my book file into his computer and converting it to Word format? Mind you, I have copyrighted my book with the United States Copyrighting Office. Isn’t what he did illegal? To understate my reaction, I was livid. I emailed him my feelings in all caps, large type. Thank the goddesses I saved a copy of the final draft in my computer. I immediately went to my KDP Bookshelf site, deleted his handiwork and uploaded a fresh, current copy. Then I proceeded to submit the book for publication.

Yesterday afternoon while I was finalizing my publishing details, something was going on under the trees in the forest. When it was done, I received an email of explanation, this one, from Amazon’s Executive Customer Service office, the KDP Wizard, telling me that the reformatted content (that I had deleted) had not been published and that she had now removed it and reuploaded the Word document I had originally saved. I wonder what document that was….

Since there is a two or three day delay between my emailing KDP and their reply, I suspected she had deleted the Word document I had uploaded, my final version. I clicked on the Kindle Previewer on my KDP Bookshelf site and saw – blank pages. I uploaded a fresh copy of the final version, clicked on Previewer again and saw – blank pages. Furthermore, the site now tells me that my book is in review, rather than having been published.

Throughout this month of stumbling amid sweaty entanglements of elephantine vines in the forest, I have been dealing with KDP people all of whom are sitting on their divans in their living rooms in India gazing into their crystal balls: I get emails that say, “Ah, I … see … in your document … that …” you need to change this to that. Means of phone contact does not exist. The next email would say to change that to this or possibly to the other thing. The KDP website instructions tell you to save your Word document as a web page, zip it and upload it. I did that while at the same time sending my Word document to another Amazon Kindle site to be converted to Kindle format and then downloading it into my Kindle so I could see how it looks.

Ultimately, this week the Wizard told me I could simply upload my book as a Word document, what I suspected last month.

Amazon has come under fire for utilizing such exotic hirelings. Overall, their customer service is superb, among the best; during all this crystal ball gazing, one sales supervisor, who knew nothing about Kindles, listened to me on end, sympathetically, and a few days later made a follow-up call to me. He did give me the email address to the executive customer service office.

No matter the place, the hirelings can be right here in the U.S. – the Downsourced. These are the people who never managed to graduate from kindergarten, apparently, who cannot read, write, do numbers, type – or listen; they cannot do anything but text. But they can be paid less. I just wanted a simple number from one young girl and she just could not seem to get it together beyond arguing with me. “Don’t argue with me,” I admonished. “I’m NOT arguing with you,” she said.

In my day, which was about a year ago, to get hired we had to take tests in English, math, IQ and personality – at least I did; maybe they saw me coming and got wary.  It’s hard not to outright insult these — the Downsourced — over the phone; but, then, they wouldn’t get it, anyway.

They are the Downsourced, the petty tyrants, and we are their Downtrodden.

Too bad these companies don’t realize that good customer service brings them business. Since my daughter became manager a few months ago of the health food store where she works, due to her endearing personality, sales expertise and product knowledge, she has increased sales and brought back former customers. No one wants to shop where customer service personnel treat you disrespectfully; those stores lose business and then close. It is my intuition that people who treat me disrespectfully disrespect themselves.

As for downsourcing, possibly I could get a job with Amazon KDP, lazing on my living room couch pulling cue cards out of a hat – for the low pay, it couldn’t require that much effort.

—Samantha Mozart

Monday, May 14, 2012 — Last year, as every year, I gave Emma a Mother’s Day card. Even though I picked one with a big picture of colorful flowers on it and a simple verse, when I showed it to her and read it to her, it didn’t much register. This year, I received a message from her.

Emma’s healthcare aide Daphne came by on Mother’s Day 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.” How thoughtful and touching.

Then 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.

Daphne put the butterfly in a jar giving it air and showed her son, 11. Her son had come to our house sometimes and helped Daphne take the last photos of Emma. “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

May 4, 2012 — My friend R emailed me this photo he took of a place he visited recently. The caption read “Where Am I Now?” I was disconcerted to learn that he had gotten lost. I hope he found his way out, because hours elapsed before I read his email. He could be floating behind one of those medusae. On closer inspection we might see his face and hands plastered up against one, peering out at us.

Where Am I Now?

Clearly, this is an 1890s spaceship that ran out of oats and couldn’t take off once it landed. The careful viewer will observe the wheelhouse on top, indicative of the purpose of the contraption. I think R sent me this photo because he believes I was around then and therefore could identify it for him.

He believes I was rolling hoops across the stage at Ford’s Theatre the night Lincoln was shot. I will let that premise rest with the ages, or the angels, whichever that may be.

My fellow blogger, http://lameadventures.wordpress.com/2012/05/04/lame-adventure-304-annual-day-of-dread/, encountered today, as her blog title would suggest, her birthday, just 17 years shy of her 70th, she reports. I am shy of my birthday, too, because it coincides with the number of this blog chapter – LXX.

I would like to tell her that the next 17 years will imperceptibly crawl across her course at a garden slug’s pace. But, why should I when those lost years flashed by me like a silver bullet. Well, look, at least she doesn’t match in age her blog chapter number – CCCIV.

Emma and I had a long ride together. The last years weren’t what we had hoped, but we did our best. Her horses were wearing out. And, after all, when she left us, she was XCVII, and even after she had lived that many years, the 1890s spaceship would have been before her time.

Yes, this building dates to before Emma’s time and before my time – MDCCCLXXXVII, to be specific. Aren’t we glad we didn’t live at the time of the ancient Romans? It seems a lot of work, plus think of all the horsehide parchment it would use up, to write a simple 1887. Besides, in my experience, Latin is not an easy language to learn.

Despite its erection before our time, Emma and I, indeed, our entire family enjoyed happy times inside this lacy, filigreed, flowered affair with its medusae and magnificent architectural art, a time capsule, as it were, the abandoned carousel pavilion in Asbury Park, N.J. When, in the 1980s, the owner could no longer afford the upkeep on the carousel, he tried to sell it. A nonprofit group tried to raise funds to buy it intact. They came up a few hundred thousand dollars short and the owner stood firm. Tearfully the group witnessed some of the carved horses sold one by one at Sotheby’s auction. The pavilion stands abandoned today. That carousel was considered one of the most beautiful in the world, built in about 1910. Adroitly carved horses and other animals stood or rode up and down, four abreast. I can attest to this. It was a big one, a genuine, first-class merry-go-round. I loved riding it. I always liked to ride the outside horses: they were bigger, and I loved trying to catch the brass ring; I loved the music of the calliope, too, and hearing the drum and cymbals every time you rode past the little open door displaying the mechanisms at the center. It is sad. It was a beauty, a classic. Among the best amusement park rides I enjoyed in my childhood.

I spent many happy times in Asbury Park as a kid, in the late 1940s to early 50s. We may still have the family photos somewhere. I remember the deep blue ocean and the huge waves, looking more like a California surf; the coast drops off steeply there, not like the South Jersey shore with its gradual slope. In Asbury Park they roped off the swimming area so people couldn’t go out too far  and get swept away.

I spent many happy times in the funhouse, too, the spooky part and the funhouse mirrors – the mirrors will always feature prominently in my memory. When you went to Asbury Park, you had to stand in front of those funhouse mirrors. The Ferris wheel, too, was the best – so high you could see all over Asbury Park and the seats had to be caged.

My little brother, Bobby, often asked, “Daddy, are we going to Raspberry Park?”  Daddy would take us there on a Saturday or a Sunday.

For me, this photograph of the carousel pavilion evokes the music of the calliope, the whir of the merry-go-round on its axis, the sounds of gleeful laughter, the breakers crashing against the shore, all riding abreast the pungent aroma of salt air, popcorn, cotton candy and creosote from the sun-warmed pilings supporting the boardwalk.

The shore played prominently in the lives of generations of our family, both sides.  We spent much of every summer there. My grandfather and uncle commuted weekdays between work in the city (Philadelphia) and our summer home at the shore.  That is why when the Navy took my husband, daughter and me to Southern California during the Vietnam war, I couldn’t understand why anybody would want to live as a flatlander when you could live at the beach in that kind of temperate year-round climate with that beautiful coastline.

Where is the Asbury Park merry-go-round now? Here is its story: http://www.palaceamusements.com/sothebys.html. Here it is illuminated at night: http://www.elvision.com/asburypark/apbrochure-back-web.jpg. A medusa — is that you, R?: http://www.flickr.com/photos/army_arch/4727322120/in/photostream/

Where am I now? might be a question my visitor cat, Keats, is asking. Thursday evening a week ago, after his sumptuous dinner of dried grilled-flavor cat food and a teaspoon of canned grilled chicken, I let him out. “Now, be home by ten-thirty,” I told him, as usual. I have not seen him since. He kept a fairly regular schedule coming and going. I miss the little fellow. My hope is that, since he came to me wearing a collar and with impeccable manners, clearly much loved, that he has returned to his original family. Or maybe he is busy modeling. This sure looks like him in this picture below.

Keats?

Possibly his people moved, he got away and finally they found him. That happened with our gray shorthaired cat, Muffet, when my daughter, Kellie, was a teenager. On moving day Muffet went out the door and disappeared. We looked all over the neighborhood and couldn’t find her. We returned many times, we asked neighbors, we put up signs. Months later Kellie returned to the neighborhood and a friend said, “I saw your cat.” She was living two doors down from our former house. We picked her up and took her home with us.

Keats, I think, was playing the field, maybe with a special mission to stay with persons who need a companion, and then when all is well, moving on to the next.

Where am I now? I have disembarked from the merry-go-round of caregiving, yet I remain involved as an advocate, listening to others, sharing my experiences, giving them guidance, finding them help in what small ways I can.

I believe, though, that I would spend one hundred dollars, maybe two, just to rent a car for a day, hop into it, and drive to Asbury Park just to ride that merry-go-round one more time.

On April 6, 1971, reminiscent of Asbury Park, I composed this poem:

Ragged Days

Only a specter,
I stumbled into
An abandoned amusement park,
Over haunted relics,
And the dizzying merry-go-round ride
Of those ragged days:

Through cobwebs of disenchantment
I groped, to uncover
Half buried in dust
The scattered fragments
Of a long-ago shattered
Funhouse mirror.

—Samantha Mozart

May 1, 2012 —  I have lived the life of someone else for nearly a decade. That life was Emma’s, organizing her finances, her pension and Social Security, her doctors, her medications, her healthcare aides and communicating with her friends: not much time for recreation. Emma lived her own life – fashion model, secretary, toy poodle breeder, artist, hostess, traveler. Now she is gone – off on some journey, and I experience the sensation of awakening slowly from a dream.

Thank goodness my friends and family are around to connect me from the past perfect (before Emma became ill) to the past tension (Emma’s protracted illness) to the present – oh, wait, I don’t have to take Jetta out, prepare for an aide to come this morning, put medications into a little dish, launder Emma’s bed sheets.

I have one close family member linking me all the way back to the far distant past, to my Mattel employee days of the late 1960s when I was listening to Joan Baez and Beatles music. That is my daughter, Kellie. Then Emma was not much older than Kellie is now. Kellie was younger than my two granddaughters are now. I used to bring her home toy samples. Gentle Ben was her favorite. I worked in Mattel’s Dolls and Hot Wheels Product Planning Division and then later in sales. In sales, one of my roles was dressing the Barbies, preparing them as models and for their glam shots for the sales catalog the buyers from department stores such as Sears would see. As an adult with hands the size of palmetto palm fronds, I begrudgingly bent, twisted and stuffed those Barbie arms into the sleeves of those tiny little dresses. At least it was easy to figure out where the dress went and where their shoes went.

Today, department stores, offering their quality apparel, furniture, fine linens, china, crystal, silver and other items, the stuff of Emma’s generation, sold by refined sales personnel, are relegated to the past. Big box stores replace them, vending their cheesy wares, rung up by inconvenienced employees.

Just so, there was the fifteen-dollar build-it-yourself bookcase Kellie and I bought in the flat box at Walmart the other day, while she was staying with me after Emma’s funeral. For something made out of cardboard, like the backing you’d find on a writing tablet, and particleboard, the box sure was heavy for having only three shelves and being as tall as a five-year-old. Kellie carried it for me. She brought it into the house and we took the pieces out of its box. We sat there in the middle of the living room floor staring vacuously at boards, piles of little screws and nails all around us and an instruction sheet of drawings only, no text, clearly missing the step 1 1/2.  My friend Jackie called.  She had recently restored the historic building she bought downtown, almost single-handedly, with a little help from her dad.  “Do you mind if I come over?” she said.  “Come quickly,” I implored.  She facilely laid all the pieces out in order, pointed to what got screwed or nailed to what, and I followed suit, hammering and screwing everything together with the hammer and screwdriver from the toolbox my stepfather gave Emma when they got divorced in their 70s.

After assembling the bookcase, we indulged in piles of crackers, gourmet cheeses, gallons of wine and protracted conversation.

Midway through the wine, Kellie showed us her series of iPhone photos, demonstrating that she is much better, with the help of my two granddaughters (The Three Kellies), at arranging “Pole Barbies” than bookcase parts, uninspired by Miley Cyrus’s pole dance at the Teen Choice Awards. Utilizing the girls’ vast Barbie collection, they had placed their undressed Barbies around and among their staircase spindles and lounging along the upstairs banister, in provocative positions.

Pole Barbies

Ah, the pleasures. Life goes on.

—Samantha Mozart

Monday, April 23, 2012 — Today the dogwood tree outside my window blossoms, a mantle of white sheltering its branches. White tulips in our front flower bed raise their angel bells to heaven, the irises don their purple scarves, and the rose bushes lift hundreds of yellow buds like candles to the sun. Emma is gone. In her physical form she will not see these, some of her favorite things. We rejoice that she is released from her long suffering.

She passed peacefully Wednesday afternoon, April 11. Her Hospice nurse, Hospice chaplain and I stood by her side. 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 her shoulder and laid my hand upon 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 choice of passage to her next journey, next lifetime. She is aware that she is out of her body now, I am told by a spiritual teacher friend, and in a strange new place, like a dream state, 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. Meanwhile, too, she has been here with us, her family.

After her passing I sensed Emma’s presence here in our house in Delaware as have my brother and my daughter down in North Carolina. My daughter, 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 chose for Emma is blue. My granddaughter did not know of my choice.

Friends phone, send notes, and stop by bringing food. I serve the food using Emma’s plates and utensils. All of the things here in this house are hers, things that meant so much to her, the furniture, the service she thoughtfully chose and delighted in displaying to entertain her guests at luncheons and dinner parties. Ever the lady, she was sweet, charming and smiling.

Emma’s memorial service was composed more of music than speaking. It was what I wanted; I think she would have, too. Two of our friends and our Hospice chaplain spoke. The messages were uncannily appropriate to our family, about things the speakers could not have known; they were to the point, filled with wisdom and love. A friend played his guitar, sang two songs and offered a brief prayer; then our Hospice music therapist played her guitar: She sang a song cycle we had chosen together – Buffy Sainte-Marie’s “Until It’s Time for You to Go,” changing the words to suit mother and daughter; Willie Nelson’s “Angel Flying Too Close to the Ground;” and Bob Dylan’s “Forever Young.” To conclude the service she returned and sang the Gounod “Ave Maria” transitioning into the Schubert.

Our healthcare aide Daphne put together a beautiful DVD documentary from photos of Emma’s life, and we displayed some of her watercolors. The butterfly was the theme of the service as it appeared to be the theme of Emma’s life. She had images of butterflies everywhere, on her clothes, around the house, and created one in watercolor. It didn’t surprise Kellie, my brother Bob and me, therefore, that each of us sensed her absence at the service. In fact, as I greeted guests before the service, it took me a while to realize that the casket was there in the room with us, at the front of the funeral home chapel, and that a beautiful spray of flowers, dotted with a few yellow roses, as I had requested – her favorite flower – draped it: “She’s not here,” I thought. “She’s just not here.” 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.

Emma’s burial service in the cemetery on the hill overlooking the city and rows of roofs and chimneys of surrounding boroughs was tender on a warm, sunny spring day and brought her body to rest, with her family, just blocks from where she had grown up in West Philadelphia.

I will continue writing here of Emma’s and my journey together and of other thoughts and adventures.

Meanwhile, Emma, safe travels. May you, my mother in this lifetime, journey in peace and love.

—Samantha Mozart

April 9, 2012 — If I wait long enough to write this chapter, I will die and have to reincarnate to finish it. Am I unconsciously conducting an experiment here to see if we actually do come back after death?

In the process of arranging for Emma’s memorial service, I am selecting music and sorting through old photos. Our aide Daphne will arrange them on the bulletin board, also create a photo CD. She loves photography and working with photos. It seems that my family and Emma’s friends reincarnate as I sort through these hundreds of photos selecting ones where Emma looks beautiful – of those there are many – and those which best document prominent events in her life. I get these photos out and our loved ones are all around me. I remember them, feel them with me, like they’ve come for Sunday dinner; I laugh at their jokes, relive our fun times together. Are they really here with me, or have they gone on to new lives? Maybe their particles are just scattered out there, bits becoming parts of this and that, like dust in the wind. Maybe I dust them off my furniture. What about their souls, their spirits?

Members of my family, independent of one another have told me that I am a reincarnation of my great-grandmother, my father’s father’s mother, born in the 1850s. It wouldn’t surprise me. I have many of her characteristics and experience memory flashes, like photographic slides, of living in the latter half of the 19th century and early 20th century. I have a vivid imagination. Too, I have that Victorian mentality. Victorians, my grandparents, born in the 1880s, raised me. I used to listen to my grandparents discussing the Civil War as if it occurred yesterday, events as told to them by their parents, who lived through it. My friend R insists that I was performing in Our American Cousin at Ford’s Theatre the night Lincoln was shot. He ought to know if he was there, too. His point, though, isn’t that I have reincarnated but that I am old.

Or maybe it’s not reincarnation but atavistic memory stored in one’s genes. My great-grandmother’s experiences are stored in the genes I inherited from her. I draw a complete blank, though, in knowing anything about my great-great grandparents. When I asked my father and my uncle about our ancestors, they laughed and said, “Be careful what you ask. You may find someone who was chased out of England.” I wouldn’t be surprised, the way I get chased out of supermarkets, pharmacies and liquor stores around here. Even Emma tried to chase me away as caregiver: “I’ll have you fired! You’re not cut out for this! No one asked you to do this!” OK.

In the PBS series “Finding Your Roots,” Henry Louis Gates Jr. traced actor Kevin Bacon’s ancestry back to England’s King Edward I. Kevin Bacon’s family and mine are both Philadelphian, going back centuries; maybe we’re related. It would be just my luck that if I got Henry Louis Gates to research my genealogy, he’d discover I am related to Hitler. My great-grandmother, from whom I may be reincarnated, was of German ancestry, as were others on both sides of my family.

Beliefs on reincarnation are many and varied. Sometimes I believe we reincarnate and sometimes I think when we’re done, we’re done, like going to sleep. We live many lifetimes in this lifetime, related to our disparate experiences – first I was a secretary, then I became a hair designer, then a caterer, then a caregiver – like that. Sometimes, happily, I’ll reconnect with a friend from one of those eras, as if meeting again in another lifetime. And haven’t we all met someone we know so well from the start that we swear we’ve known in another lifetime?

I have witnessed Emma smiling at or speaking to someone, usually a long-deceased relative, in her demented state. Sometimes she’d ask me if I have seen them. No. But I may sense a presence. Many Hospice and nursing home nurses have told me that it is quite common for their patients to see those long-deceased loved ones, and these nurses believe that the visitors are actually there.

Children seem to be most receptive to seeing specters of the deceased. The specters visit the children dressed in clothes they wore in life, clothes that the children had never seen them wearing, but that the children’s parents recall and may have photos of their loved ones wearing.

But are we reborn on this earth? I have heard we choose our parents. (If so, a few among us may wonder, “What was I thinking?”) Some religious beliefs say when you die, you don’t come back to earth, but go to heaven or hell. The former place I think is a little airy-fairy, floating around on clouds playing harps all day; the latter frightens me, given all the mistakes I make. I opt for the Take Two theory. I think as we venture through this lifetime, we are given second chances and more, until we reach perfection or near perfection, like being promoted to the next higher grade in school. Citing my years of ballet classes as one example, I know reaching farther, standing taller, jumping higher, perfecting that presentation of the foot, and still, with all the corrections, there is more. You may reach near perfection one day and the next resemble a mushroom. (My daughter’s and my ballet teacher, by the way, said that pointe shoes were invented by the Marquis de Sade. I tend to agree. The tears welling in a dancer’s eyes while gliding across the floor in pas de bourrées do not arise of ethereality, but of pinching pointe shoes.)

One caregiver said that she believes the dead are more alive than we, because they are no longer inhibited by this tough material world. And many of us like to believe that our parents, grandparents, children and siblings are romping around in another world, whole again, doing what they loved. My family and I believe my father is in trolley car heaven; he so loved trolley cars. Often, family members truly believe the deceased contact them. Although I have not seen the specter of our neighborhood Woman in White in my house, I do sense a presence, and possibly that of my deceased relatives. Often, just as I am thinking of a friend that friend phones me or I receive a letter or note from them. So, why not? “The spirit comes in amazing ways,” said one woman in my Linkedin “Women Writing for (a) Change” caregivers discussion group.

Another attributed our not believing in reincarnation to our conditioning to believe in the beginning and the end of creation – in guilt, fear, and the like – there’s that either/or heaven vs. hell thing again. Most believe that the soul and spirit go on after the body dies. And some have learned to listen, to pay attention to one’s surroundings and watch for signs, and then to implement the wisdom given them by these spirit contacts.

So, as I plan for Emma’s memorial service I find myself weirdly juxtaposed in party planning mode. While she is downstairs in her hospital bed sleeping, slowly slipping away, I am upstairs selecting photos, preparing a music soundtrack and sketching the order of her service. It is an odd, mixed-feelings zone. I suppose she would say, “I did it for my parents and my aunt; now it is your turn” – ever the teacher.

I do wonder where her soul or spirit go in this final stage of dementia. Sometimes I actually sense her hovering around – usually her former bright and cheerful self getting up in the morning, yellow sunshine streaming through her bedroom windows, and having things to attend to around the house, her toy poodles to feed, or clothes to choose and lay out to wear for a gathering with her friends, or telling me something. It’s as if she gets up out of her body and comes around every now and then. And this I have experienced only recently. Maybe, too, it is my letting go, a clearing.

Emma loved music and loved to dance; so, while some of the music will be of a spiritual, serious nature, I want some of it to be upbeat, to reflect the joy she derived from her life – like including “Puttin’ on the Ritz,” which will reflect her love of parties and friends, dancing, and her involvement with fashion and modeling, dressing up in heels and hat to go to the country club for luncheon with friends.

—Samantha Mozart

Saturday, March 31, 2012 — Thelma & Louise dreams persist even among women of a certain age, our bodies may grow old, but our minds remain young. For instance, in my Linkedin “Women Writing for (a) Change” discussion group, among us caregivers and former caregivers, all near my age, we’re thinking about getting together and taking a Thelma and Louise trip. There are too many of us to fit into a car, so we’ve decided to get a bus – a VW bus.

I just watched a really sweet and poignant film, “Ladies in Lavender” (2004), starring Judi Dench and Maggie Smith. Set on the coast of Cornwall, England, in 1936.  Judi Dench and Maggie Smith portray spinster sisters, around 70 years old. They arise one bright clear morning after a terrible storm during the night, walk down through their English garden to the shore to find a body washed up on a rock. He is face down. “You turn him over,” say Judi Dench’s character, Ursula, to Maggie Smith’s Janet. Janet turns him over and they find he is a young man, barely alive. They get help, take him into their home and nurse him back to health. In the process, they find he is Polish and an accomplished violinist and Ursula falls in love with him.

Judi Dench and Maggie Smith are such superb actors, and longtime friends in real life, like sisters, that I have to remind myself that they are acting and not the sisters of the story. The music, too, is beautiful, romantic violin pieces by Bach, Paganini, Massenet, Mendelssohn, Sarasate, Debussy and others. The story is sweet, the acting superb. The seacoast scenery is fabulous, the locals may as well live near me, on the Eastern Shore of Maryland. The actors and the producer/director, acclaimed British actor Charles Dance, who wrote the screenplay based on a short story by William J. Locke, call the movie a fairytale. Oh, I don’t know. Maggie Smith, so good at delivering lines – as you know if you’ve seen the recent PBS stunningly successful series, Downton Abbey where the creator/writer Julian Fellowes gives her in the role as the Dowager Countess all the best lines – says in discussing Ladies in Lavender, “Women – I don’t know about men – but women can fall in love at any age, no matter how old. It’s odd.” (I may not have quoted her word for word, but it’s close.) Even at 70, I find I have the same feelings as I did at 40, or sometimes at 25.

These sisters live in a remote area along the rocky English Channel coast, where, still feeling the trauma of one great war, they are under the mounting dark thunderheads of another. As caregivers to this young man, who speaks no English but a little German as does Janet, the sisters are forced to review their lives, how they felt then and how they feel now, how they lived then and how Janet, the pragmatist, feels they should comport themselves now, in their older years, and should they report this talented young musician to the authorities.

They are isolated from the greater society, yet the village people lend a hand. These days so many families’ members are scattered miles and days’ journeys apart, so a family member can’t just drop in to see how things are going. And then there’s the thing about everybody’s being too busy, driving kids from one activity to another, scraping together funds to pay for kids’ sports, pursuing careers, texting.

For myself, as I have found with the caregivers in our discussion group, we’re not thinking about how to comport ourselves. Whether family members insist we take time off, to family members who drop in occasionally just to lob bombs loaded with criticism, to dealing with healthcare workers who slack off or drop the ball, to having a supportive team, the caregiver is still alone, executing and coordinating events, and cleaning and feeding the one for whom they are the carer.

But, when it’s over, say the caregivers, in general it takes about four years to regain yourself and settle into a new life on an even keel.

Yet, ultimately Janet and Ursula want to live their Thelma and Louise moments. Totally: I forget how old I am at times. For me, the best therapy has been my music. Over the past five years I continued to think I didn’t have time to play my guitar. It took our young music therapist – I shall call her Sarah, after Sarah Brightman, because like Sarah Brightman she looks and sings like an angel – to suggest I play it. OK, I need to play it, I thought. She is guiding me and being a caregiver to me; I’ll make the time to play it. I view this as an opportunity.

I practice nearly every day. The developing calluses on my fingers make it hurt to type. But I manage. When I play, I don’t want to stop. My hurting fingertips make me stop – that and I have to cook dinner for Emma and me so that it is ready when our aide, Daphne, arrives. When I play, I forget everything. I play the songs I wrote 25 to 40 years ago. I almost forget that this week Emma has stopped eating much.

Emma’s Dr. Patel visited two weeks ago. He came in, immediately went to her bedside, stood over her, observed and thought. He looked like an angel standing there. Finally, he spoke. “It’s not imminent,” he said. But, then, “Have you made arrangements?” I told him I had completed the fundamentals. He said, since she is calm and no longer agitated, that we should wean her off the Haldol, gradually decreasing her dosage over two weeks. I have done so. She discontinued taking the Haldol this past Thursday. Also on Thursday, her blood pressure plummeted almost to the danger zone. Tess, our Hospice nurse, phoned Dr. Patel and he said to discontinue the blood pressure medication. So she is off all her medications now and we are observing, and trying to turn her and place her in bed so that her raw bedsores don’t worsen. Dr. Patel said that patients in her state need only a few bites of food a day. He said her liver is still metabolizing. Before he left he said again, “Make arrangements.” Emma was eating about half a plate of food twice a day until Thursday. Now, with encouragement, she will eat a few bites per meal. The upside of this is that I have something readily available for myself to eat at lunch.

My Hospice team realizes that carers need care; and as my mother sleeps most of the time now, the balance of the caring has shifted towards me, for which I am most grateful. I think everyone should have such a team of support all the time, no matter what. Remember, I am not surrounded by immediately concerned family. It’s more like – Them: “Oh, how is she doing?” Me: “Oh, you would be shocked if you saw her. She looks like a Holocaust victim, sunken cheeks, sleeps all day and with her mouth open. I can no longer color her hair, so it’s gray; you’ve never seen her with gray hair; it’s always been dark.”

Believe me, even with the support of the Hospice team, I still experience a lot of stress, so it takes just a nudge to push me over. Thank goodness for their support, even if they do effectively block me from the doctor when, at this stage, I have many questions, questions daily about each of Emma’s downturns: “What am I to expect next? How many days? What’s tomorrow? Please don’t let me be blindsided. I am not a doctor or a nurse. I have always been into well being not ill being. You know what’s next. You have people dying right and left all around you every day. I don’t. As a layperson, I have no idea what’s next, beyond speculation.”

On her last visit two weeks ago, Sarah taped me singing the songs I have written so that she could work with them, creating harmonies and counterpoint-picking rhythms. This Friday, when she came, we immediately sat down and played a song I had written in Southern California in 1970 and copyrighted, “Gypsy Curse.” We played it cold to see what might work. Sarah graduated from Temple University a few years ago with a major in opera. Friday she recorded our practice session on her iPhone; later she emailed me the recording. Due to popular demand, I am posting it here. Please, please don’t leave my blog and never come back after listening to this. It is a rough draft. I promise never to appear on “American Idol.” I post our recording here solely to exemplify the therapy of music and how transporting it is, relieving the stress and returning us to realizing ourselves.

This is a difficult time – not the physical stress I was under previously, but just watching Emma slowly slipping away. My mother loved music and I like to think on some level she heard Sarah and me performing my song Friday in the living room by her bed. Were she consciously aware, she would have enjoyed it.

Sarah’s musicianship makes our performance sound good, she is so talented. For me, after all these years, finally, I can be like my beloved Beatles, performing and recording an album. Sarah and I decided that we could record these rough drafts as an album of outtakes, like the Beatles, and make millions of dollars. I call our duo The Angel and the Foghorn.

Step aside Giacomo Puccini.

—Samantha Mozart

March 24, 2012 — It’s snowing pink here in central Delaware. Tiny petals from the blossoms on my next-door neighbor’s four ornamental plum trees lining the street float to the ground like snowflakes, covering lawns, sidewalks and cars. Every afternoon around three, hundreds of honeybees come, buzz among the trees and tend the blossoms, collecting pollen to generate new plants and to produce honey; obviously a local beekeeper’s bees. The bees work for about an hour and then are gone. I’ve read where bees come out to specific plants on schedule daily, as if they had alarm clocks in their hives. I can set my clock by these many bees.

Many, too, are the comments to the question I posed for my Linkedin discussion group Women Writing for (a) Change. Our email boxes are flooded. My question: “Caregivers: What are your experiences? As a sole caregiver for my mother, 97, who has dementia, I find caregiving to be spiritually life changing, among other things.” One of the writers has posted this discussion to the news media. She says, “I can see that this is where everyone’s frustrations and ideas are suppressed and it took an intelligent person to bring it out! Thank you.” Wow.

I am blown away by the exuberant response. I am thrilled. I have thought long that these caregiving stories need to be told – not only for the caregivers but also for the suffering for whom they care, the ones who were once vibrant, leading vital lives like the rest of us, the ones who have lost their dignity, who feel trapped and that they have become burdens, the ones whose tickets have been collected, those just ahead of us in line. Scary, isn’t it. Lifeboats can sail only so far.

The outpouring of comments and loving support is due largely, I feel, to the catharsis of caregivers being able to tell their stories to likeminded, sympathetic listeners – there seem to be not just one story per caregiver, but many and varied, at once sad and funny. As a caregiver you navigate murky serpentine channels strewn with sandbars and idle vessels, all the while avoiding mutiny of the ship you are captaining.

We in our discussion group travel among loving, buoying companions with shared adventures. Here we are not alone. It is a safe port. But when in the midst of the caregiving, one certainly feels alone, no matter how many friends, relatives, and healthcare supporters surrounding one. It is intense.

You can spot a caregiver a mile off, said one caregiver in the group. It is true; caregivers have a different look, a different mindset; battle wounds that are healing, I suppose. The writer wrote a story on her blog about her mom. It is called “Last Light”. It is beautifully written and poignant. I recommend you read it.

No one gets it (not surprisingly), said one discussion group member – not a sibling, other parent or anyone else, unless they are or have been a caregiver. “Lack of sleep, driving to appointments, chasing reports and professionals, not being able to work or socialise, anticipating the needs of your loved one, safeguarding the home,” said another. “This isn’t a Walt Disney film,” she added. I’ve raised my children and this is much harder, said yet another.

These have certainly been my experiences.

Another, who is caregiver to her husband, said, “It’s one thing to do the work required and to keep up good spirits, but what I feel is so difficult is the loneliness and the lack of understanding of so many friends who think I should leave him with others and get away.”

A man in the group, who may or may not be a caregiver, commented that these caregivers make it sound as if they are the only ones doing everything, that they act as if they are all alone. Stress is a creation of the mind, he said.

So I responded that, yes, as caregiver, especially as sole caregiver, you do feel as if you’re the only one doing this – because you are: your personal and social lives are limited. You are in the middle of a cold, gray sea. It is stressful, albeit stress exists only in the mind. But through that, it is a growing experience, hopefully leading us to recognize one day that we can let the stress go and think more positively – one day; that is with patience and compassion towards ourselves. And then to move through the stress without adding to it. But, yes, have faith. Every time I’ve come to the end of my rope, someone catches me. Yet, I don’t know what’s going to happen next; I just hope that someone is there and not asleep at the helm. Sometimes that someone is me. It is a stretch, and there are times when the tension relaxes, but then another wave rises and rushes into my wheelhouse.

My friend Jackie commented on my last chapter, “LXIV. Cargiving: The Gift”: “Your gift is the talent of being able to portray your story in words and sharing it in an enlightened way with others on the same path. Thank You!!”

I am not a doctor. I do not carry a stethoscope. Yet, I, too, want to know what’s going on and how to remedy a malady. I carry a pen. I’d much rather wield a pen for enlightenment than a sword for killing.

—Samantha Mozart

Tuesday, March 20, 2011 — The role of caregiver is a gift, say many caregivers, to have the ability, opportunity and love within to care for one unable to care for oneself. These caregivers regard the experience as humbling, allowing them to perform a spiritual gift for others. Indeed, some of these caregivers have helped many persons in need and would do it again. To be given the role of caregiver is an honor and a blessing, they say.

One woman caregiver to her mother pointed out that only her mother had given lifelong care to her, and that giving care to her mother was short term. Another, caring for her mother, has children with additional needs and wondered if caregivers “are given this responsibility because they trust us to keep the promise we made to them sometime, somewhere.”

Is being a caregiver easy? No, not at all, many say. And many say they would not do it again. Yet, even they believe caregiving is a gift, and most find that they can do it.

One member of the discussion group, a man, a spiritual teacher perhaps, and possibly not a caregiver – I have asked him and he has not responded – said that, for those of us who think caregiving is taking us away from our lives as we expected to live them so to fulfill who we think we are, that what we are doing now is our enjoyment of life, not what we think we should be doing. It is difficult, he said, to see the whole picture when we are caught up in a situation. Most of us have a hard time accepting things as they really are “rather than the inheritance of our own conditioning.” And, “Life is beautiful,” he continues. “Don’t jeopardize these precious moments. They will not come back.”

True. But I didn’t arrive at this realization without being dragged kicking and screaming. My initial reaction to this premise reminds me of Jonathan Livingston Seagull author Richard Bach’s 1977 book Illusions – The Adventures of a Reluctant Messiah, wherein the old messiah has designated Richard, a barnstormer, to become the new messiah. No way, says Richard. I am NOT going to become a messiah. Well, he has to, and he’s a bit of a bumbler at first, but he finds his way through. Soon after Illusions was published, I visited a friend and spotted this little volume on his bookshelf. “Here, take it,” he said. “It is yours.” A friend had given it to him. Inside, interspersed throughout, are maxims from The Messiah’s Handbook. My favorite, which I recite often these days is, There is no such thing as a problem without a gift for you in its hands. You seek problems because you need their gifts. Often I wonder, what did I do to deserve this gift?

This man in my discussion group goes on to remind us to think positive and from that the good will come. He says that stress and drain do not exist; they are creations of our minds.

Well, let me tell you … he’s right, I believe. But, I have not reached that level of spiritual evolution where I can say, “Oh, it’s stress: well, I can just let that go,” and skip off whistling into the night. No. I have reached the stage, though, where I can acknowledge that I am stressed, know that it is a creation of my mind, accept that I am stressed, giving myself compassion; and understand that this awareness frees me to take the next evolutionary step. I also know that taking that step is not easy and that I will likely stumble, like a toddler taking its first steps. Possibly orthopedic shoes would help in my case.

Emma has been my lifelong teacher; this is her continuing gift to me.

The gifts come in the doing and thereby the learning, in my experience.

One of the greatest gifts given me through caring for Emma is learning about facing stress and dealing with it without wanting to actually blow someone’s head off. Besides, it’s messy and as my friend Jean said, “Ya gotta have a drop cloth,” and I don’t have one. Oh, I don’t know … maybe on Amazon—

This gift came to me from Emma’s Dr. Patel. It has taken me a year to recognize this gift. Last March when he 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.

“But I have to work at the hospital until five,” he said, quite unassumingly. And then we hung up.

He called back the next day and said they told him he had to come. Medicare requires the Hospice doctor to visit every 60 days.

So, he came, and just when the doorbell rang I had the oven door open, with a pat of butter in my hand basting a turkey breast and Emma had escaped upstairs.

I got to the front door and opened it. He introduced himself, greeting me professionally and respectfully. 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. He sat very peacefully in the blue chair in the living room until I brought Emma downstairs. He then went over to her on the loveseat where she always sat, pulled up a footstool, sat down beside her, greeted her softly, asked her how she felt and talked with her a few minutes. Had he carried a flute rather than a stethoscope, I would have thought he was Lord Krishna.

He consistently conducts himself in this manner, no matter the measure of chaos around us.

My brain got charged with a whole new bank of lit up lightbulbs yesterday when Tess, our Hospice nurse, said simply, “He doesn’t add to the stress; he moves through it.”

Oh.

No wonder my encounters with him feel like meeting an oasis of the mind. I knew that our first encounter had spun me around and changed my life somehow, but I didn’t fully understand what it was I was supposed to be learning from that until yesterday.

—Samantha Mozart

“You are never given a wish without being given the power to make it true. You may have to work for it, however.” —Richard Bach, Illusions

March 19, 2012—I love a good discussion. Therefore, a week ago in my Linkedin Women Writing for (a) Change discussion group, I posed this question: “Caregivers: What are your experiences? As a sole caregiver for my mother, 97, who has dementia, I find care giving to be spiritually life changing, among other things.” These writers’ overwhelming response has amazed me; I am profoundly touched by their experiences and their honesty.

For some, care giving has ended because their loved one has passed on; for others, it continues. I have classified the outpouring of comments into five groups of caregiving: the experience, the gift, alone, family and other thoughts (including the aftermath), and reincarnation. I will thereby dedicate one post to each of these facets.

The Experience

One woman wrote that her “mother ran into a freight train in the middle of the night in the middle of the desert, on her way home from the Los Angeles county fair” and that it took emergency workers four hours to cut her out of her car; she was conscious the whole time. Four days later she died suddenly of a pulmonary embolism. Seven years later her father died suddenly of a heart attack. It occurred to her that she never had to take care of anybody until now, 30 years later, when her husband underwent discectomy of cervical fusion.

My aunt, now 98, living in a nursing facility an hour from our home, was our family caregiver, repeatedly, mostly for those on her in-laws’, my father’s and uncle’s, side of the family. I often wondered how she endured it – driving to their homes, seeing to their needs, preparing meals; but she did: she saw the need and answered it, energetically and cheerfully. Her mind is still good and she misses the old days, misses her ability to get out and do things, to engage in volunteering; she feels as if she is a burden.

Emma cared for her Aunt Mary in her last days, in 1960. I never had to care for anybody until now, caring for Emma; and I missed the illnesses, deaths and funerals of most of my family because they were all here in Delaware while I was living in Los Angeles for 30 years, working and raising my daughter. To be honest, I don’t believe I am cut out for caregiving. Emma pointed that out to me often enough when she still could talk. Our Hospice support team view me as a good caregiver. I bought this house (with Emma) for the sole purpose of caring for Emma in her last days. I am organized and manage all of Emma’s and our household needs. For Emma’s direct physical care, I do the best I can with what I have. That is all I can do. I forget about myself. While I was tending to Emma’s senior citizen matters, I disregarded that during that time, I had become a senior citizen. Now that Emma has quieted, only waking to eat, I have had some time to become reacquainted with who I am; playing my guitar again, for instance.

Another woman bought a home to accommodate her mother who had become terminally ill and remodeled part of the first floor to meet her needs. This woman was teaching at a correctional institution, had a daughter in middle school and a son away at college. The visiting nurses and physical therapists thought this woman had time to follow through with the physical therapy; she did not. She became extremely stressed and thought she would die before her mother did. She found a caregiver family from Poland to take care of her mother while she was at work.

“You want to believe it is stressful,” a woman who took care of both parents for 10 years said. Her mom had Alzheimer’s. No one – not a sibling or other parent – truly gets it unless he or she is a full-time caregiver. “You have to take time for yourself in the midst of all your giving,” she said.

Another’s mom had a partly debilitating stroke at 78. She put her mom in an assisted living facility, but she recounts that her mom’s end of life cycle became “the craziest roller coaster” after that – rehabilitating, followed by a series of debilitating strokes and ministrokes. Her mom, like Emma, went from using a walker, to a wheelchair to being bed bound. Watching her demise was devastating. Once, their Hospice told her that her mom would not make it through the weekend, but she fooled them and lived another six months. They had to give the facility directions not to take her mom to the hospital, which, when she had strokes, traumatized the healthcare aides. She sat by her mom’s side “in the hospital in the middle of the night waiting until I could wheel her to my car wrapped in a blanket to take her back to the facility.” Watching what her mom went through was beyond depressing and stressful, she said; she would not wish what her mom went through on her worst enemy. Her in-laws, independent, in their 90s, with eroding health, seeing what her mom went through, committed suicide together.

While she was undergoing cancer treatment, another woman learned that her mom had Alzheimer’s. Before her mother died, this writer’s sibling was diagnosed with advanced cancer. While she was going through this, her children “flew the nest” and she went through a divorce. Her mother died four years ago. Now she has settled into a happy, new pattern with a “wonderful writing business” and teaches journaling. She believes that journaling got her through all of these experiences. She had to try to learn to navigate a lot during that period. She honors her life story with love, she says, for these ups and downs have taught her what to do for her own sake and for others.

I can tell you from my experience, much navigating goes on, and journaling helps immensely. Sometimes, for me, I don’t know what I think until I write it down. Journaling does help in the present and it helps in review, to see the patterns, to see where you’ve come from and where you’re going. It helps me to see how precipitous is Emma’s decline, too, even though in the present her dementia and my care giving seem to have gone on forever.

—Samantha Mozart

Thursday, March 8, 2012 — The phantom of my blog has been going around vacuuming and doing some spring cleaning in here. He has mounted a fresh floral header – pear blossoms, I believe; and he has installed some new music in the right sidebar for you to listen to while you enjoy reading my posts.

Who wouldn’t want to keep a phantom around if he goes through your place vacuuming and tidying up?

My next-door neighbors tidied up their backyard this week. A tree company came around and chopped down three of their grand old trees – two maples and a conifer. Now from my studio window I can watch the cars fill up the parking lot at the Methodist church two blocks down the street; and I can see clear to the Acme supermarket a half mile away, over on the main road; I can tell what they have on sale. Well, almost – I can see the road but not the Acme.

One of my neighbor’s trees had been struck by lightning, another was struck repeatedly by the beak of a woodpecker, and the third was just plain rotted. Their yard looked like a park with all their trees and their impeccable maintenance. It is still attractive, but in the summer I will no longer be able to walk the lane bordering their yard, taking respite beneath the deep shade of those broadly reaching maple branches.

The pear trees that provided my photo op a few years ago are gone. The town chopped them down – probably because pedestrians got seasick bobbing among the hillocks the tree roots made beneath the historic brick sidewalks. God forbid you might stumble, spill hot coffee and burn yourself. I, though, wearing athletic shoes, can walk along a perfectly flat, concrete sidewalk, trip over nothing, and sail horizontally past two storefronts before landing on my feet, a performance I describe in Chapter XXVII, “The Horn Section.”

The 25th anniversary performance of “The Phantom of the Opera,” produced at the Royal Albert Hall, aired Sunday night on our local PBS station. Emma would have loved it; but she lay sleeping peacefully in her hospital bed downstairs, unaware. PBS aired this production as a fund raising effort and offered the DVD as a gift for an annual subscription at the $125 level. The spectacular production captivated me. Thankfully they didn’t burn down the Royal Albert Hall. With all those exploding plumes of fire on stage, can you imagine? Queen Victoria would have had a meltdown. But the phantom got me.

This phantom may be the best of them all. My friend R agrees. He is the youngest to perform the role of the phantom; he is Ramin Karimloo, born in Iran and raised in Canada. He was such a passionate, credible phantom, and when he removed his mask, he looked such a fright – long wisps of gray hair sporadically sprouted desolately from his skull, and his face a mass of scars and stitches and botched repairs. He was so utterly disconsolate to lose Christine. There it was, that lost loves thing. I could certainly relate to that. “Oh, poor baby,” I empathized. “How could she just walk away from him who is so sincere and loves her so much to go off with some guy akin to Barbie’s Ken?” Oh, it was awful. I was devastated. I grabbed my credit card and ran sobbing to the phone, blew my nose, dialed the number and subscribed at the $125 level. The DVD will be delivered in six to eight weeks. My friend R ran out and bought it at Walmart for $19.99. I wonder if it’s the same copy. You know how they always say you can’t get it anywhere else; this is an exclusive offer. We’ll see. I’d rather support PBS than Walmart, in any case.

Today the dogwood tree outside my studio window shows signs of reincarnating, springing to life with tiny white blossom buds, thousands upon thousands of them at the tips of the branches. In a couple weeks the branches will appear laden with snow.

Two days ago I walked to a store near the Acme to talk to my friend who works there.  I wanted to know how she was getting along and to hear her story. She just lost her mom to cancer. Her mom, who lived in Florida, underwent a regimen of medical screenings last fall, emerging with a clean bill of health. A few years ago, after she had her breast cancer removed, she refused follow-up treatments; therefore her insurance did not cover testing for cancer. Suddenly she exhibited signs of what the medical professionals deemed dementia or Alzheimer’s. It turns out she had two brain tumors, one anterior, the other posterior. My friend rushed to Florida to be caregiver to her mom. Her mom mercifully lived only a few months without suffering much pain. My friend recently returned. She misses her mom very much. At the store we discussed how spiritually life changing is being a caregiver. Then a man walked in. “Stay if you can,” my friend told me. This man, Eugene, said he had just gotten his pastor’s license.

“It’s not about all that out there,” my friend said to us, waving her arm at the vast parking arena, cacophony of stores, and supermarket gas station outside the plate glass window. “It’s what’s inside each of us.”

The conversation among the three of us brought to mind my thoughts written in my pair of “What Am I Reading?” essays posted here under my menu heading “Sitting on a Juice Crate” – that you are born, grow up, get married, have children, lead a vibrant life, have grandchildren, become decrepit, watch everybody else lead their lives, and die.

“It’s what we are,” said Eugene.

—Samantha Mozart

 I just found this story in my computer. It represents only a moment in time, the barest of moments. Emma wasn’t always like this. She was kind and sweet and did many thoughtful, selfless things for me and for my brother. I, on the other hand, could have been more patient, thoughtful and resilient here, I think. I wanted you to read this, though, because I believe this moment depicts a scene that most mothers and daughters face at some point. And, then, you’re sorry and the incident’s forgotten, hopefully. This one, although I wasn’t fully aware of it at the time, shows what Emma and I encountered in her early stages of dementia.

May 13, 2005 — “Mother!” I called. I was explaining to her what the doctor had just told me over the phone about her medication dosage. We were in the kitchen. She walked away. She hadn’t heard me. I walked over and stood beside her.

“Mother.”

“Don’t yell at me,” she said.

She was wearing her red sweater, the color she favored and which made her look her most beautiful, even at 90, especially when contrasted to her dark hair, the color I had just retouched for her.

“I was speaking to you about your medications and you walked away.”

“I can’t hear,” she said.

“That’s why I said it loud, because when I said it the first time you didn’t hear.”

“You don’t know how to speak to someone who can’t hear,” she said.

“How do I?”

She stared at me.

“How do I?” I repeated. “How should I speak to someone who can’t hear?”

“You speak softly,” she said, “in a way in which the person can hear you.”

“But when I do that you walk away from me. You don’t tell me you haven’t heard me. It’s as if you think I have nothing worthwhile to think or say.”

“Sometimes I wonder,” she replied.

It was allergy season. Seeds had burst into pink and white blossoms, and new green leaves waved from the branches of old trees like so many handkerchiefs from the hands of young mothers waving their children off to school for the first time. My asthma made me weary, heavy. My chest tightened.

“When I speak to you it’s because I am trying to communicate with you. I am trying to tell you something you need to know.”

My throat was closing. I just wanted to sit down.

“I’m exhausted,” I said, squeezing the words out. “Now, because you walked away I have to start over. I have to repeat myself. I’m going in circles.” I took a labored breath. “That takes time away from my writing, which could be earning us the money we need.”

“You spread yourself too thin,” she said. “You’re not cut out for this.”

Sincerely and with deepest reverence, I try.

I recalled my conversation with my friend Frank the day before. We discussed that we creative ones are often told, “Oh, you can’t do that.”  Frank invents solar-powered devices.

“Industrialists are always saying to me, ‘You can’t do that,’” he said. “And I say, ‘No, you can’t do that.’”

To my mother I wanted to say, “No, you’re not cut out for this.

Instead, I said, “You’ve been telling me that about everything I do all my life. Just once in your ninety years maybe you could find something I can do.”

A few weeks earlier she pointed out to me that I am inadequate.

“It’s amazing I’ve been able to achieve as much success as I have, most of which you don’t know about, given your assessment of my value,” I said to her. Fortunately you’re the only one who tells me that.”

I had followed her through the dining room into the living room, checking that the windows were closed insuring that I wasn’t broadcasting to the neighbors my efforts to get through to my mother. She was now sitting on the shallow cushion of her 18th-century-style, pastel tapestried, cherry-wood love seat designed for petite ladies.

I stood in front of her a few feet away, noticing how small she was and how pretty she looked in her red sweater and white slacks, the perfect attire for such a beautiful May day.

I thought about how lucky I’d been having supportive friends and associates all my adult life. I thought of how supportive I was of my daughter, now a mother, too, no matter what her choices. I have always been thankful to have had good parents, who were good people. I felt sad that my mother’s parents never told her how beautiful she was nor how good she was at things. An only child, poor little thing.

My friend R asked me recently, “What does selfless mean?”

Well, I thought today, it’s the opposite of selfish. My mother is selfish. She doesn’t know any better.

I didn’t want to argue. I just wanted to communicate, to help. “I don’t want to argue with you,” I said. “I don’t want to draw this into some melodramatic thing. I’m just trying to have a logical discussion. I’m just trying to communicate something of importance to you.”

“I can’t hear you,” she said.

“You don’t want to hear me,” I said.

She stared at me.

I never got anywhere. I never got through to her. I walked away. I got the big flower pot I had brought in from the shed, two quart bottles of water and the baby pear tomato plant I had raised from seed in the sunny Victorian dining room window and carried them out to the front porch. I placed the young plant in its new pot, watered it and left it outside in the sun and breeze for a few hours to get used to being outside. “Hardening it, it’s called,” R told me. I raised it from a tomato seed from a plant he had given me last year. I refer to the plant as his grandchild: “My seed,” he said.

I felt like a child, chasing after my mother as she walked away. I just wanted to be loved, for her to take an interest in me, her daughter. Maybe she no longer can; she’s 90, after all. She’s lived a long life. The scene playing across my mind brought to stage front the day when I was nine. She and my father had had a fight. She had her suitcase in her hand. She was standing by the front door, her hand on the knob, ready to open it. She was walking out on us.

“Don’t leave, don’t leave!” I begged. I held her sleeve, hot tears running wildly down my cheeks. My brother, six, stood at the foot of the staircase, in the near background, staring.

“Mother,” I cried, “Please, don’t leave.” But she did. She came back the next day.

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In fact, Emma had been supportive of me in many ways – of my photography and my writing. Probably, if you asked my daughter if I’ve been 100 percent supportive of her, she’d say, “Ummm … well …,” and half smiling, let her voice trail off. Moreover, I’m pretty certain not every person I’ve encountered in my life has found me and my endeavors that fabulous – well, maybe one or two have not….

I place this story here purposefully, to juxtapose it with Chapter LXII, which follows and which shows the decline of Emma’s condition and how mentally and spiritually life changing the role of caregiver is.

—Samantha Mozart

Sunday, March 4, 2012 — The first robin redbreasts returned to our part of Delaware last week. The blackbirds flocked in last week, too, and, after what I suppose to be their long flight, bathed in the murky puddles left by the recent rain. As I have written previously here, my former next-door neighbor’s big black and white tuxedo cat, Bootsie, quite tall on hind legs, would lean over the rim of their backyard birdbath for a drink. He looked like a little man attending a jazz age party who had boozed too much and was throwing up in the fountain. Enticing as that water may seem, frankly, what bird would flap about gleefully in a basin of water infused with cat backwash?

Speaking of the mind of a cat, a mystifying pursuit, I admit, my Valentine cat, Keats, is living all nine of his lives at once, I think. Typically male, he sleeps all day, stretching and getting up only periodically to eat, then carouses the night outdoors. Sometimes he returns before I go to bed and sometimes he does not. Sometimes I find him in the morning curled among the yellow daffodils blooming in my garden. Maybe he spends the night with his other people – all nine families; I don’t know. —Or, maybe a 1920s limousine drives up around midnight and takes him someplace; maybe he meets people I’d like to know; maybe he will introduce me….  The other night when it was pouring rain, I walked over to my neighbor’s porch, the one where Bootsie used to live, gathered Keats into my arms and brought him in. Expressing his displeasure at this turn of events, lashing his long, thick tail, nearly clanging it against the steaming radiator by the front door, he insisted on returning to the rain. I let him out. “Come back in,” I suggested (you know, with cats one can merely suggest, politely). “No. I’m good,” he seemed to say.

A pair of cardinals flits among the branches on the dogwood tree outside my window as I write this, and I am listening to the music of the blues – well, the blues and New Orleans jazz. I am listening to Sidney Bechet (May 14, 1897–May 14, 1959 – he died on his birthday) playing his soprano sax. Such extraordinary musicianship and talent he had. It is curious that I haven’t heard of him or his music before – or perhaps I have and just not realized it; his name is familiar. Woody Allen introduced me to his music in his movie Midnight in Paris, which I returned to see a second time, via a DVD my friend Jackie lent me. The song Bechet performs in the movie is “Si Tu Vois Ma Mère,” meaningful to me, and hard to listen to just once.

That movie is so right up my alley. Like Gil Pender, the protagonist, in the movie I found a vehicle by which to return to 1920s Paris and meet all my favorite writers and artists – the Fitzgeralds, Hemingway, Faulkner, Picasso, Dali, and so on, and Gertrude Stein. I would love to have a salon like Gertrude Stein’s, where friends, artists, musicians and writers just drop in. That would be so cool. I guess Gertrude Stein would not say “so cool” – “Oh, Ernest, it’s so cool of you to drop in. Oh, Pablo, that painting is way cool.” However cool, though, in the movie next we returned to La Belle Époque, my other favorite era where Woody Allen introduces us to, among others, Degas (painter of the dance (ballet, one of my favorite activities) and dancers) and Toulouse-Lautrec – remember the 1952 Moulin Rouge movie where José Ferrer, on his knees, portrayed Toulouse-Lautrec? Well, if you’re not old enough, you can probably find it available on DVD. I, nevertheless, am old enough, almost, to have lived in these two eras – the two eras sandwiching World War I. I wax nostalgic: ah, but were I living then I would not be writing this blog. Maybe I’d be publishing it in serial form in newspapers or pamphlets, though. (When I worked in federal legislation at the National Education Association in Washington, D.C., years ago – yet more recently than the 1920s – teachers used to write in for phamplets and Congressional roosters.)

Woody Allen makes the point in his movie that when you believe living in another era to be better than this one, you are in denial of the present. OK.

I watched the movie Hugo (extraordinary) the other day, too, returning yet again to the Paris of that era. Composer Howard Shore’s soundtrack to this movie is mesmerizing. I noted that a number of artists had commented on iTunes that the music is ideal for concentrating on artistic endeavors; I find that so for my writing. This is why I downloaded the soundtrack. Brian Selznick’s story is genius – no wonder the novel topped the New York Times bestseller list – as is Martin Scorsese’s directing, as always. Martin Scorsese and Johnny Depp are two of the movie’s producers.

I returned to playing my guitar two weeks ago. Our Hospice music therapist suggested I do so; then we could play guitars together. Since Emma began exhibiting signs of dementia, I haven’t played it. Over the years, I have composed many songs for my guitar. Copies of all but a handful, unfortunately, are in storage in California. I do not have the funds, about $3.000, to bring them and all my belongings here. So, I practiced the handful I have with me.

For the present, while Emma is subdued, I have made time to play my guitar every day. I definitely am rusty after these five or so years of not playing, but it comes back. Magically, three days ago, my ability to pick the strings returned. I couldn’t do it and then it just kicked in. I have heard that when you don’t use a certain brain function for a while and then begin using it again, that the function is restored – unless you have dementia or something like that.

The music therapist returned this past Friday and she accompanied me on my songs, picking her guitar strings contrapuntal to my strumming and vocally harmonizing to my singing. Let me tell you, it takes a lot of nerve, or just plain idiocy to put oneself out there and sing in front of someone who is a professionally trained opera singer. But, I did, and our performing together was – well – so cool. Carole King, step aside ….

The return of spring signals to me that Emma’s condition changes with each change of the season, and usually just after Dr. Patel’s visit. He is scheduled to visit in a couple of weeks. He is a better predictor than I, so when he visits, I will ask him what is to come. I hate being blindsided and having to deal with bully nurses and their ilk.

Presently, however, I am charmed to revisit my guitar, to experience, nearly lost in time, a return to myself.

—Samantha Mozart