How many times can you lose your mother? This phrase repeats itself in my head. It is not a metaphorical question. My mother has had Alzheimer's for almost 15 years.
My own journey alongside her illness has led me through strange territory. Mostly unguided, mostly alone. The one phrase I encountered in my occasional inquiry into the nature of the disease still resonates - that for those closest to the individual, there is a phenomenon which is akin to a succession of little deaths and, for each one, an attendant period of mourning.
I knew my father lived this on a daily basis, until his death over a year ago. He insisted on caring for her, up until he had a stroke and even after, although at that point in an assisted living home. I could see it in his face when it happened. Mom, who seemed to have drifted farther and farther away, would suddenly reappear on the horizon, bright as a sunrise, with some intelligent, sensitive remark or bit of conversation. I could see it; a little flame of hope rekindled in his eyes... until, and there was always an until, her old self would be obscured again by a swift and mysterious cover of clouds. And he would fall under the same shadow - his lover of 65 years suddenly rendered mute, inaccessible once more.
When we first realized what was happening to her, after a long period of denial on my father’s part, I was living on the East coast and they had just moved to California. Did my father move to get away from the friends who might realize what was happening to his bride? For me, a divorce and a new idea of my future brought me West. And so began my own series of mournings. I know that for my father they were more poignant, as he harbored more hope that the Aricept and the Nemenda would return him to her. He scheduled a cruise to Alaska, only to find her wandering the decks late at night. Back home, he valiantly set up her easel again, and bought new paints for her - with the hope that she would revive her practice as a painter. And there it all sat, gathering dust. And there sat this once glamorous, vivacious couple in the gathering gloom of my mother’s waning identity.
One day I pulled out her big box of Pantone color sheets. She used to cut these into shapes, form collages and create compositions for her increasingly abstract paintings. She had a sense of color like Bonnard - subtle interplays of gold ochre, periwinkle and violet, pale butter yellows, sudden flashes of manganese blue. As I spread the sheets before her and grabbed a pair of scissors, I asked if she’d like to play. She smiled wanly and simply looked at the colors, breathing and looking. I bit my lip. Where had the fire gone... where?!! But I knew my mind needed to back off, to look again. Was she seeing color in an altogether different way? Was she simply imbibing it... like a newborn? Color stripped of meaning, color pure unto itself? I would never know, and she could never tell me.
And I began to see now that questions I’d never thought to ask would remain unanswered forever. This is one form of goodbye that would continue to echo. A question would leap to mind, about her childhood, about her thoughts as a painter, about her career as a gallerist but, encountering her smiling placid face, fall back into painful obscurity.
We got used to her, by her 80th birthday, living in her own world. But suddenly, sitting in the back of a car, she would erupt with a funny one liner and startle the shit out of us. And I wondered; Where have you been hiding, girl? Then she would return to calling out the color of the traffic lights. And again we would silently mourn.
I came to visit her at the group home she now lives in: sitting beside her wondering how to interact, I picked up a fashion magazine and began to fan through the pages and point out unusual combinations of color. My mother was always impeccably stylish, in my youth rather Parisian, and then later following her own muse as a supporter of wearable art. Of course now no longer able to dress herself, she has been reduced to odd assemblages of sweats and my Dad’s old cashmere sweaters. Her eye rested on a particularly striking garment she herself might have worn. When I asked if she liked it, she slowly nodded and said Yes. But suddenly she blurted out “We can see the Temple from here...” I dropped the magazine. Temple? Is she seeing heaven? Has she been reincarnated from a former life as a Jew, or is she envisioning her next incarnation as a Hindu? Mom?? Tell me! Please tell me more! What else do you see? But there would be no further explanation. Her face returned to its former vacancy. Still I laughed at her wondrous words. And then, as I hit the street, mourned once more.
But now - speaking about the loss of her - I wonder, did I ever really have my mother? Looking back through my youth, I remember a charming beauty, always willing to bestow a smile upon me, to lick her thumb and sweep a smudge away, to show me how to push the chocolate chip cookie dough from the spoon. But somehow, so little else. I found an old slide a few years back, of her changing my diapers... There was a look of such sweetness on her face. And yet I have no recollection of intimate moments like that. None.
She was an independent female, struggling in a suburban reality. A woman who could decorate a house with more imagination than anyone else on the block, who threw killer parties and sashayed through them like a Hollywood glamour puss. She was a painter, my god, in early sixties, suburban Chicago... she was a painter! She painted lemon colored nudes and dissolute, lavender odalisques! She did make me a Halloween costume I remember well - a bat suit. Probably my idea, but it was swell. Mousy gray fur, a little bat-girl cap and real wings. That Halloween she actually dressed as a demented ghost to hand out candy and with my Dad created a tape loop which they played when kids came to the door. I still have the big copper pitcher into which we dropped water then amped it way up along with creaking doors and moaning. Nobody else around did that.
Of course I think she really favored her first-born, my handsome and sarcastic older brother. And she had no choice but to continually monitor my younger brother, a cherubic boy with a satanic heart. Being the only girl, I expect she thought I would just toe the line. Like she had. And when it become clear, from an early age, that this was not my style, I believe some sort of strange competition began. Here was a woman desperate to break free, to claim her right to a full-blown identity, and here was her girl-child, hellbent to do the same, but with a whole future ahead of her, and changing times that might actually mean she could swing it. I believe this advantage of mine, instead of being reason for hope and joy for her progeny, created a sense of injustice. And rather than rail against the world, she chose to let me navigate a still rocky road alone.
So no, I never really had my mother. And this is why it is even more painful now. At an age when old behaviors begin to drop away and parents are often more able to accord their children emotions held back, and vice-versa, she is far beyond. I remember keenly when I was in my thirties and, after a precipitous and absurdly early marriage and divorce, was hitting my stride as a girl about town in Manhattan, I had come home for a visit. As I left, knowing I might not see her for some time, I gave her a huge embrace. Her arms lightly encircled me but, after a split second, fell to my waist and pushed me gently away. My gut clenched. My mother pushed me away. It all became clear.
And yet, though she never held my hand as I stumbled and hacked my way through an urban jungle, my mother did one great thing for me. She showed me what one woman could do, with some grit and determination. In her late forties, she gathered a small group of women together and started a gallery of contemporary crafts in Greenwich Connecticut, and later another in Manhattan - a gallery renowned for representing the best of American crafts, from potters to jewelers to woodworkers. She was considered a luminary in the field and was genuinely loved and admired by her craftsmen. My mother was an entrepreneur.
And although I never really had her full attention in my youth, never really knew her in my adulthood, what I have now is an inheritance: of how to find my mojo, how to seize my moxie, how to use my voice. Maybe she knew that all along; that I wasn’t the sort that should be coddled, that wanted to be ‘understood’, that would accept her guidance. And so she decided to let me grow all on my own. And although I probably would have liked to have been offered all those things, maybe I wouldn’t be the woman I am now if I had.
Still, I will never not feel her loss. And every time I see her, will mourn again for the magnificent woman I never got to know, my mother.