Category Archives: Journal – Vol. II

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