Wednesday, June 3, 2015

"I did it my way": Mama's graceful, cleverly defiant, dance with dementia

     (11/10/2014) The tiny woman kneels among the greens in her vast, tiered garden, which is still sparkling with dew. The luxuriance and graceful beauty of this place -- which is her greatest joy and most profound refuge -- stun her every day. She is in her mid-90s, but her classically beautiful face is unlined and radiant as she tends the neat rows, and cuts a handful of Tuscan kale for her lunchtime frittata.
    All around the garden is her larger Eden -- a landscape of massive trees, boulders, blossoming ground covers and robust flowers -- which slopes sharply down toward the stream, whose surging and cascading waters fill the air with an invigorating energy. It has taken her 50 years to create this secluded paradise, which was an expanse of hard, barren dirt when she bought it. She closes her eyes and inhales the scent of Moroccan mint and rosemary as the sun rises, and a breeze ripples through the aspen.
     "Mama," I say softly, touching her shoulder. Her head is slumped forward as she sits in the hallway of the secure dementia ward.
    "My dear daughter!" she exclaims, rubbing her eyes and smiling drowsily. "Is it time for lunch yet? I have had such a busy morning out in the yard  -- I'm quite hungry!"

Her yard was an ever-changing testament to her love of Nature, and her symbiotic relationship with it..
    No one has bothered to wash her face or brush her hair in this $72,000-per-year institution. She is wearing mismatched, rumpled clothes (which she later tells me she slept in), and old slippers. It's true that my mother has recently relinquished her lifelong imperative to be beautiful and stylish, as the dementia has progressed. This new stance -- "I don't care how I look" -- was a welcome liberation as far as I was concerned. Her beauty has been a burden in many ways.  
    But she is beginning to look like a derelict much of the time, and someone needs to address that, out of respect for her and her family. She, who was always so dignified and statuesque and proper in her bearing, is sprawled out like a rag doll on the Formica chair, her hair hanging over her face. She is so dear to me that this new nonchalance is oddly charming. 

Even her more-alarming-by-the-day frailty was endearing.

    "Can you sit here and wait just a minute?" I ask her, kissing her cheek. "I need to find your aide. She forgot to put on your compression stockings."
    "Take your time, honey," she says. "I'm comfortable." She yawns, and squints at the indistinct comings and goings in the busy corridor. Vaguely she recalls that she is supposed to be at work. Before panic sets in, there she is, dressed in one of her many stylish designer suits, purchased from the Assistance League Thrift Shop. 

   As she walks purposefully through the halls of the University Hospital, dozens of people -- from the custodial staff to the doctors and nurses to the institution's executives -- stream past her in a blur, greeting her by name. It is a gratifying interlude for her each day -- this feeling of belonging and of shared purpose, of being "out in the real world," which she lost when she devoted herself to motherhood. As the senior Patient Advocate, she is the oldest and longest-serving volunteer in the hospital's history. She provides conversation and comfort to teen mothers, burn victims and those who are dying in extreme pain. She investigates complaints, solicits suggestions, and brings her bedridden constituents whatever they want, even if it means driving all over town to find it. She loves this "career," which is the first one she's had since she gave birth to me.  

How she loved being a valued part of the team in this noble, dynamic environment!
      "Mama, the aide is here to put on your hose," I say, detangling her hair with my brush. "Then we can go eat."
    "What a nice surprise to see you, dear!" she says disconcertingly,  opening her eyes as I remove her slippers. "What day is it? Have I already had breakfast?" 
    "You ate well, but you left your waffle," the Brazilian caregiver smiles.
    "Good," I reply. "It's junk food. What you need is a 'mess of greens' (as southerners phrase it) and a big hunk of your whole-grain cornbread with flax seeds."
      My mother's legs have begun to swell and become discolored due to a longstanding vascular condition. While the overworked aide struggles to get the ultra-tight stocking on, my mother tells me she has just finished her shift at the University. "I wouldn't trade my job for anything, but I really am exhausted," she says. "I may have to take a nap after lunch. Then I need to go buy some kombucha at Whole Foods for one of my cancer patients. He says it strengthens his immune system. Where is my car, anyway? And what on earth is kombucha?" I explain it to her. I had considered using this fermented beverage myself several years ago, but I couldn't find any that didn't have added sugar.
    She cannot remember or accept the idea that she can no longer drive. Like many older people, she regards driving whenever and wherever she wants as an essential aspect of her freedom -- her way to remain connected to the "outside world," and to have "adventures."

She loved her 1990 Lexus, which she had of course bought used. "It's me," she said.

    I ask the aide to bring me a warm washcloth. My mother smiles and sighs as I brush her hair, which she has finally stopped dyeing black. I always told her it would be stunning in white, and it is. It gives her a flowing, angelic quality. It softens her.
    "Aren't you hurting your back, fixing me up?" she asks. This institutionalized, "demented" person is as considerate and observant as ever. Her core character and personhood remain intact, even though aspects of her mind -- her memory and her grip on reality -- are clearly fading away.  Her face is still movie-star beautiful, flawlessly porcelain, with a lovely flush on her cheeks. I cleanse it lightly with the washcloth, and then smooth on some moisturizer from my purse. You could even say she glows. I still melt whenever I see her. It's that good old oxytocin pouring through me.

A new dimension to her glow: the afterglow of her sparkling dream world.

    Mama has always been not merely a woman, but also a "lady" -- a quality that I believe has become anachronistic in the past several decades, but one that seems to generate respect and fondness in those around her. Even with dementia, she is a lady, except when her defenses break down and she awakens to the truth about her involuntary confinement -- a truth she is usually able to repress. Repression is one of her many well-honed talents. If she weren't so good at it, she would be screaming and tearing her way out of this place.
Her white hair gave her an ethereal quality./ photo by Kseni Muza.
     More than seven months ago, we had to remove my mother from her home -- her beautiful home, in which every detail was an expression of her aesthetics and interests -- after a series of falls and a growing inability to cope with the demands of everyday life.  She has never been back, except in her river of dreams.
    Coping with her grief and rage over being locked away has been a nightmare.
    For months, she was either weeping in my arms (I can't possibly convey how heartbreaking this was) or phoning me, begging me to come and take her home. She had become so small and fragile that she seemed as innocent as a child. "Please!" she cried. "How can you do this to me?" Her face was rosy and tear-streaked. "I'd rather be dead than to live in a place like this!"
    Every night for the past 20 years -- as my cat has curled up adorably in my lap, to be stroked and comforted for hours -- it has struck me that mothers should morph into cats when they reach a certain age. My mother is the one who needs and deserves this attention. Instead, she is alone in her room.

Cats are irresistible, but so is my mother.
     She had some compelling arguments about why she should have the authority to decide where she will live. It was her right, she said, to spend her remaining years in the home that was the ultimate expression of her joie de vivre. This desire is almost universal among the elderly. No one wants to die in an institution, rather than being surrounded by the living spaces and belongings they cherish.
    When I told her that she had a good chance of falling down the stairs or tumbling down her steep backyard embankment -- causing death or permanent disability -- she said she was well aware of that, and it was a risk she was willing to take, and in fact had been taking for more than 20 years. "It's my life! It's my risk. It's where I belong," she cried. It's hard -- for me, anyway -- to argue with that. 
   Others, including my sisters, regard her as incompetent to make that choice. I disagree.  Many of us risk our lives or health in order to live as we please: paragliding off cliffs, texting while driving, eating crap food -- getting fat and out of shape -- swimming with sharks. Why can't she? (actually, she is swimming with some sharks as it is, but she doesn't know it). 

Poor Mama -- the sharks (and vultures) are taking over.
   My mother has become incompetent in some respects, but she is still herself. She has will. She does not want overseers, and that's just what she's currently being subjected to. She wants to get up when she feels like it. Have coffee with actual caffeine in it. Wear her pajamas while she eats breakfast and reads the paper, as she has done her entire adult life. She doesn't want anyone cheerily chirping, "Now let's do this! Now let's do that!" Her response is a (usually polite) "No thank you," although she has been known to say, "Get out of here!"
    Because going home was an imperative that has not diminished in my mother in all these months -- and because I have promised over the years that I would never let her wind up in an institution --  I arranged to have a CNA, MA, with paramedic training and decades of assisting those with dementia, to be her live-in "housekeeper" (a designation that was more acceptable to my mother than "caregiver.") I had marveled as I watched this strong, gentle, "good Christian" woman care for Joe's father, who had a difficult, sometimes explosive, form of Alzheimer's. She showed extraordinary enterprise in keeping the house orderly and sanitized, and in cooking one nutritious, delicious meal after another. But a virulent conflict with my sisters intervened, and this dream fell apart. She remains in an institution. I have let her down, for the time being, anyway. I am trying to muster the energy to contest this travesty of justice. 


      My mother doesn't recall any of the nightmarish aspects of her life that had preceded the move to the dementia facility.  In her memory, she had been living a gloriously independent, eventful life, even going to new restaurants by herself -- to try colorful ethnic cuisine, which she would later replicate -- and spending late afternoons barefoot, with her trouser legs pulled up, having a Heiniken on the sunny back deck (which seemed so funny and out of character to Joe and me) overlooking her glorious backyard "Heaven on Earth."
     She said she felt "free as a bird," now that she was living alone for the first time in her life. It was exhilarating to do what she wanted, at her own pace, and be answerable to no one. She be-bopped around her house, cooking and cleaning to her beloved "smooth jazz." Music tore her apart -- as it does me -- in a beautiful way. A saxophone solo could almost bring her to tears, or to her knees. We have cried as we swayed, arm-in-arm, to David Sanborn. I sobbed messily as I danced with my mother to Luther Vandross's "Dance With My Father" : 

If I could get another chance, another walk, another dance with him
I’d play a song that would never, ever end
How I’d love, love, love
To dance with my father again
    As she entered her mid-nineties, I was always conscious, after our long Sunday mornings together at her dining room table, that this might be the last time I would see her alive. The way she embraced me as I left, and waved goodbye from the doorway, made me believe that she might be having the same thought. Our hugs lasted longer. Her wave was bittersweet (if not outright sad), rather than cheery.

It was my turn to be the mother./ by Elizabeth Vigee de-Brun

    My mother's gratifying, busy life had continued, even as she entered her 95th year, but an erosion began, as appliances broke, home maintenance issues arose (painting, plumbing, flooring, fixtures), mail and laundry piled up, food burned on the stove, and she began to lose interest in the many and varied things she had always enjoyed.  She, who had always been so insistent -- neurotically so -- on being busy and productive, appeared to have called it quits. Quite suddenly, she became chronically cold, tired and lacking in appetite. "I'm wasting away," she said, seeming almost proud. 
Mama -- don't go! / Drawing by Lizzie Bishop.
    During a protracted, unusually cold and dark winter, she stopped taking the vitamins that she had used religiously for decades. She virtually stopped eating. She no longer listened to her music or watched the news or stayed up until midnight reading (and underlining) her magazines on history, health & nutrition, design, business and finance, culture, fashion, and environmental issues. Even "American Idol" and "60 Minutes," "Lawrence Welk" and "The Apprentice," lost all appeal.

My mother fired him, even though she had a bit of a crush..
  "I like the quiet, except for the birds," she said, when they finally returned in March. For the first time in her life, she was able to do nothing, turn off her brain, and be content. She lay for hours on the couch in that big, silent house, and told me, "I am in the most beautiful room in the world, looking out at the most beautiful view in the world."
    My theory at the time was: She is ready to die. She had always been terrified (and insulted) by the whole concept, but it seemed that she had had enough of this particular planet.
    I can't imagine a life in which my mother isn't there. I am so blessed to have reached so-called senior-citizen status and still enjoy her irreplaceable companionship. Even so, her apparently serene acceptance of the inevitable was a relief to me. She was actively aiding the process at this point. I had always expected a nightmarish deathbed scene, in which she gripped me fiercely and demanded, "Help me! Make them do something! I'm not ready to go!" This vision has haunted me for most of my life. Now I could cross one hideous, morbid fantasy off my list. I should have known that she would find a graceful way to work things through and float away courageously.

She has always done everything with modesty and class. I assume she'll die that way as well.

    My father had died with dementia in the spring of 2010, and here we were, deja vu all over again. Both of my parents succumbed to this cruel assault without relinquishing their graciousness, Southern charm, their concern for the well-being of others, and their gratitude for every kindness. 
    My mother, though, hasn't really collapsed into dementia so much as blossomed within its confines. She has come back to life, to a significant degree, after last year's oppressive gray winter. She gladly accepts the perks (no responsibilities! give me food!) of dementia, and then sneaks off to a quiet spot, where she can transport herself to a vivid fantasy world, in which she is still a free, autonomous, creative, stylish, respected and joyful woman.
She levitates within her confinement into her "real world."

    Over the past several months, I have quietly observed as my mother -- after weeks of sobbing and pleading to go home -- devised an accommodation that, to a significant extent, set her free. She incorporated dementia into her life, and had interludes in which she seemed happier and more relaxed than I have ever seen her. This couldn't have been a conscious, reasoned process. But she is a  ferociously self-directed woman who has always done things her way -- often contrary to the conventional wisdom, prevailing norms and  the laws of physics  -- and it has always been right, at least for her. She is a survivor. She has been the boss of her own life since she was 16, and she wasn't about to surrender now. 
    In a feat that struck me as brilliant and magical, she kept her "self," her "real" life and her autonomy, even within the confines of a locked dementia ward. Another resident described this strategy as "living inside my head." My mother is doing the same thing. She dozes most of the day, but it is a rich, vivid and ecstatic doze, in which she is still enjoying the sun-splashed, color-coordinated life that she had before.

My mother continues to have a sensitive, sparkling intelligence and compassion.

    Her garden reveries are so real to her that she regularly describes that day's cuttings of Tuscan or curly kale, Swiss chard, arugula, bok choy, collards or chicory, and recalls throwing them into a pan with olive oil, cubed tofu and garlic, served over brown basmati rice. 
     "There was a whole herd of deer in the back yard today," she says. "We stared at each other until I said, 'Go ahead and eat!' And that's what they did. But they were so well-mannered, they didn't mess up a thing!"   
   She often asks her bewildered tablemates during breakfast how their gardens are doing. "If you can use some greens, let me know," she says. "I've got plenty!"
    My mother said recently, "I have always adapted quite well to whatever circumstance I'm in." Although there are frequent interludes of anguish, panic, confusion and rage, she seems to have turned dementia, much of the time, into a vacation, which is something she's never had before (her world travels had nothing to do with leisure and everything to do with self-improvement. It was much more like being in school than being on spring break).
    I have never seen her anywhere near as relaxed, and intensely "present," as she is much of the time now, thanks to the restraints that dementia has forced upon her. When she described her devastation at her loss of short-term memory, I told her I faced the same frustration for years after my shock treatments. "I had to learn to 'live in the moment,' as Buddhism encourages," I told her. "Don't worry about the past. Enjoy 'the now'." 
    She is not hurried or worried anymore. Regarding the end of life, she says, "I don't spend time thinking about it." The stress, the imperative to "get things accomplished," the brutal perfectionism, have floated away, and she seems pleased just to Be.  

Her demeanor has a new Zen quality.
     Much of the time, she is suffused with radiance. She has always been a stunning woman, but this is much deeper. It took a brain disorder to give her this peace.

    Until a couple of years ago, when she was in a nursing home with a cracked pelvis, I had never seen her naked before. She allowed me to bathe her and wrap her in clean white towels, and hug away the water on her body. She had been telling me since before she was 60 years old that her body had become "hideous" as she aged. It wasn't hideous -- it was so elegant that I wished I were a painter. Even an orthopedist, who was showing me some X-rays of her back, pelvis and shoulder, said, "Her bones are beautiful." 
    Never before had  I been asked to get into bed with her, to snuggle and talk and have a nap, but now she urges me to lie down almost every time I'm there. We've hugged and kissed far more in the past year than we have in the rest of my life put together. Despite the profound pain we have all experienced during this period, I will always treasure these times. 
    Before she got dementia, she was too busy and too uncomfortable with physical or emotional intimacy to cling to me in this way. Now, I often feel as if I am both her husband and her mother. "That's understandable," she told me. "I think I need both right now."

     I had never heard my mother refer to herself as happy until she turned 96, and her memory was so impaired that she couldn't remember the question she had asked and I had answered five minutes ago. Before it got this bad, she was aware that her brain function was deteriorating. At times, she was merely apologetic or confused by this, but she often cried, "What is happening to me? I think I'm going crazy!" 
    She still doesn't realize that she has dementia. When she points to someone in the institution and asks me, "I wonder what's wrong with him," I tell her he has dementia, like everyone else who lives there. In her mind, she doesn't live there -- she just comes for the "free" food, which she is certain is an amenity that was inspired by the warm-hearted Michelle Obama, on behalf of our nation's beloved senior citizens.


     Going home remains her obsession, and she has hatched one plot after another to escape from the institution. Every night, while others sleep, she is packing up her belongings for the Great Return that she is certain is imminent. "I'm surely not going to stay here," she says.
     Once our house was built, 50 years ago, and we moved in to that dream-come-true -- with its simple lines, open floor plans, and floor to ceiling windows in back, facing "our" oak grove and wildflowers -- she set about transforming the yard into her Eden, of varied trees, assorted ground covers, boulders, and stunning profusions of flowers that came in waves from late winter through the fall.  It remained an ongoing project that kept her engaged for all those decades. 
You can't beat an apple "right off the tree."
       When she finally was able to sit on the second-floor balcony in the evenings -- exulting in her view of the mountains, the stream below, and the lushness all around her -- and reach out to pick an apricot or an apple "right off the tree"  -- trees that she had planted as saplings -- that was a true milestone.
    But the garden remained her pride and joy. She was engrossed in seed catalogs for much of the winter. As soon as the ground had thawed, she was kneeling out there for hours a day, like an Earth Mother, whose gorgeous, prolific plants were her children. In addition to the greens, there were long, slender, purple eggplants, varicolored tomatoes, peppers and squash, green beans, onions, garlic and herbs, which were surrounded by larkspur, allysum, cosmos, cleomes, lobelia, foxglove, blue salvia, lilies, delphiniums, lantana, Marguerite daisies, verbena, and I can't remember what else. Lots of flowers! It was all breathtaking. 
    But growing food -- real, nutrient-packed, organic food -- was a sort of religion for her, and her mornings and evenings among her "sweet babies" was like a prayer of gratitude and communion. It was her form of meditation: In her reverie, she lost all track of time. Gardening had a purity to it that nothing else ever had. She was creating life.

She read seed catalogs as if they were adventure novels.
    As long as she continues her pleas to return home, I will keep trying. At some point, she'll probably become so institutionalized that she will cease to care. That's what dementia wards do to you: They dash your hopes of ever having a real life again.
     Bye, Mama.
(I love you so much.)