You do not need to leave your room. Remain sitting at your table and listen. Do not even listen, simply wait, be quiet, still and solitary. The world will freely offer itself to you to be unmasked, it has no choice, it will roll in ecstasy at your feet. --FRANZ KAFKA
Tuesday, January 18, 2011
DID YOU THINK I WAS YOUR MOTHER?
When I was growing up, I went to bed every night clutching the pink, child-sized rosary I’d been given for First Communion, and prayed for a sibling. I secretly hoped for a girl like my cousin Alison whose sparkle was so bright that it lingered among the dust motes for days after she packed her dolls into their patent leather case and went home. My phantom sister would play jump rope with me in the basement on rainy days, sing along with the Beatles in the car, and let me paint her nails tangerine. But believing it wasn’t a good idea to tell God what to do, I was quick to add that a brother would be fine, too.
Most of all, I yearned for another voice in the dark on the many nights when my parents’ marriage erupted into confusing accusations and teary counter-attacks , when my father’s ancient hurts rocked our five room ranch until I was sure it would explode. As a small child, I envisioned my imaginary sibling holding my hand when I impulsively rushed out to defend my mother--invariably, ratcheting up the conflict. As teenagers, my sister or brother and I would roll our eyes with uncanny synchronicity and turn up the radio. Why don’t they just get a divorce? we’d say.
Only later when I'd grown up and taken up the challenge of my own relationships would I understand that my parents' union was more complex than I understood, that there were no clear villains, and as in most quarrels, both parties played thier roles. By then I understand that our parents hadn’t so much battled each other, as they’d waged a long and valiant war against my father’s demons. And what’s more, they’d won. The arguments would fade to a silent pantomime. Their love--fierce and affectionate till the end--would leave mw in awe.
Despite my endless Hail Marys, I remained an only child. My father, a classic extrovert, had a thousand friends “who were like brothers to him, ” but he was frequently moody and morose at home, especially when my mother was at work. I listened avidly for the sound of a car crunching gravel, signaling that she was home. The wisest and most loving of parents, she was also the sister to whom I could tell everything, and the friend who listened seriously to my music when adolescence blew through our shaky walls like a tornado. . I remember her taking particular exception to Bob Dylan, especially the line in The Times they are a Changin that exhorted parents to “get out of the new world if you can’t lend a hand.” So what does he want us to do--just go die somewhere? she said, standing, hands on hips, in the doorway of my room. But the next day I heard her singing Blowing in the Wind. Now that’s a beautiful song, she said.
In one of our most memorable games from my younger years, she would emerge in an impromptu costume, her voice comically altered, and ask, “Did you think I was your mother?” Sometimes she played a character from my beloved books; she was Jo in Little Women, Nancy Drew’s boyish best friend, George, or Amelia Aerheart. But it was her villains who made me shriek with delight. She played the wicked witch in the Wizard of Oz, or one of Cinderella’s harpy stepsisters; she pulled the covers up to her chin and cackled like the wolf who’d stolen Grandma. I loved the game, but the best part was when she pulled off her disguise, and returned my mother to me: wide smile, lilting voice, the Elizabeth Arden scented hug that made everything all right.
Now that my mother has Alzheimer’s and I have become her caregiver, it seems as if we play a cruel variation of that game every day. I hear her asking, "Did you think I was your mother?" when she curses her aides with words I never thought she knew or tells them that they’re “fired,” when she accuses me of stealing a coat she hasn’t owned in thirty years. She eyes me warily--the thief who hijacked not only a long forgotten items of clothing, but her life--as if to make sure I don’t make off with anything else. She’s supposed to be the mother, and I the child, she grumbles, as she begrudgingly accepts my help to the bathroom, or a meal I prepared. She’s the one who supposed to be in charge of home, car, job, family. What kind of a usurper do I think I am? The answer, of course, is that I am the very worst kind. I am the next generation, and I’m followed closely by another one that is already prepared to succeed me in tending the house that is our mysterious life on earth.
I admit there have been moments when I’ve returned spite for spite, childishness for childishness. (In this disease, there are stages for family members, too.) I have looked at the tiny, broken, confused woman in her wheelchair, and seen nothing but the impostor who replaced my mother in my childhood game. Once she had performed such a convincing act that I’d been genuinely scared by the role she created. When she announced that she was not my mother, I felt my lip quiver. “Well, where is she then?” I asked before I burst into tears. It's an impulse I've felt more than once in the last couple of years.
And then I catch a glimpse of our shared past--a flash of chrome yellow that recalls the old Volkswagen Beetle she drove in my childhood or a photograph of her vamping in a bathing suit, a reference to the sixties' protests. When the first demonstration against the Vietnam war was held in our working class city, she and my Aunt Kally, marched down Main Street with the disaffected college students who’d organized it on their school break. She marched not because she was politically outspoken--she wasn’t-- but because she had been singed when a boy from our neighborhood was killed there. She would never forget--not to this day--the way his mother wailed throughout the wake. For her early and unpopular stand, my mother had been criticized by a supervisor at work, a conservative priest in our parish--and worst of all, my father. But she had refused to be cowed. If they’d heard that mother’s keening, they would understand, she said, as always, giving those who disagreed with her the benefit of the doubt.
That ability to reflect back the best in others is probably what I miss most. Now I struggle to do the same for her as we navigate the fluid terrain of identity. One of the most most appalling aspects of this disease is that it doesn’t matter what you’ve accomplished in your life or how far you’ve evolved. You could achieve sainthood or Zen mastery, and still end your days in a fugue of petty angers and turmoil. In many ways, dementia is more humbling than death.
Strangely, what keeps me going is my memory of the game we played so many years ago. I am solaced by the countless times my mother returned to me, whole and smiling. And having already lost one parent, I know she will this time, too. When my father was alive, I was often unable to see past the mood changes he could not control. But death silenced his furies and returned the funloving, unfailingly generous, affectionate man who had fought them all his life. Now I wonder how I can ever live up to the kindnesses he did for the multitude he embraced as “friends as close as brothers,” or for our family.
I hate my mother’s suffering and fear her loss--almost in equal measure. In the meantime, I’m grateful for her presence in whatever form. I cannot return her former place in the world to her or eradicate her pain and fear, but I do what I can to make small moments pleasurable. I kiss her face and tell her she’s beautiful every morning. (She is.) I stroke her hand and feed her chocolate. I fill our house with the music she loves: Frank Sinatra, Nat King Cole, and yes, sometimes even that beautiful song Blowing in the Wind.
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Patry, your ability to find grace in the darkest of life's shades never ceases to amaze me. And it is so nice to see a post by you pop up in my feeder, you have definitely not lost your touch, either!
Thanks, Kerstin. What I miss most about the blog--and why I can never quit--is my old friends. So happy to hear from you!
Another memorable post, Patry. Hugs, K.
Moving, heart breaking and beautifully written, Patry! Great to see you back, take care.
Wow, Patry, what a beautiful, brutal, loving post. You amaze me with your words.
Karen; Thank you for this, and also for getting the word out on Twitter. x
Marja-leena: Yes, it's the old friends who keep this blog going, however feebly. Thank you so much.
Judy: It was a hard post to write, but I'm glad the love came through. Thank you for the kind words.
It's such a hard thing to be a caregiver of a parent with Alzheimer's. I love that you fill your house with chocolate and the music she loves. Did you see the article in the NY Times recently on giving people with Alzheimer's whatever they want, including lots of chocolate?
I sort of regained my mom when she had Alzheimer's, at least in the early going. She seemed to first lose the part of her that had constantly criticized me and made our relationship so difficult for many years - it just disappeared and she was nothing but sweet to me for the last few years! Odd disease. It requires lots of mental dexterity to enter their world and go with where they are. A joy when they're happy, but so hard when they're in an unhappy space. Well, hugs to you and your mom.
Thanks for reminding me of the gift I had with my parents. They are both gone now, but they were lucid up until the last and I didn't have to watch, as you are doing, the beautiful person each one was depart over a long painful time. I don't think I could manage as well as you are doing and I pray for your own health and well-being as you care for your mother. Thank you for reminding me of the gift.
So nice to see you back - I've been lamenting the move to other, quicker venues by our blogging community.
As usual, a few minutes of your insightful and gorgeous writing will make me stop playing mahjongg and actually get some work done.
My own Mother, now 87, is experiencing short term memory loss. The hardest part, other than repeatedly explaining how my granddaughter fits into the family, is watching her fighting this demon she cannot win against. This woman, who put aside her own happiness to let my Dad be a farmer, who raised four boys in an environment she detested, who made do and never, ever let us kids know, struggling to maintain her independence and dignity, and still lucid enough to understand she won't win.
We go on because we must.
Leslee: Thanks so much for posting that wonderful link. I did see it and it was a great affirmation; that's pretty much how we do things around here. Chocolate is one of the most instantaneous and effective mood altering substances around, as is music, nail polish, or anything that drowns out the painful thoughts for a little while.
I'm so happy that you had that good time with your mother. Understanding that the traits we dislike (a critical nature) or the ones we admire (an optimistic nature) are often hardwired in the brain and out of our control has gone a long way to increase my own compassion--and not just for my mother. Hugs to you, too.
Ancient Reader: So good to see you here again. I have missed you so. (See the comment thread in my previous post!) I'm happy to know that your undoubtedly wonderful parents had gentler passings, and that they never lost their ability to connect with you. But if it had happened differently, I have no doubt you would have met the challenge.
Ric: Yes! I, too, have been lamenting that; and what's more I've been feeling like the incessant stimulation of short communications has wreaked havoc with my attention span. In a few words, you have made me understand what a remarkable woman your mother was and is, and to feel sorrow for the stage she has now entered. "Knowing that you don't know" is truly the most difficult part. Blessedly, my mother has moved past that. Just yesterday, when hearing about Sargent Shriver's death, she said, "Well, thank God my mind is as sharp as it ever was."
This so beautiful, Patry. A heartbreaking thing it is to lose them in pieces before they are gone. The fractured self that emerges a stranger, and yet that familiar heart beats in an aging body you've loved all of your life. I'm glad your mother still loves music and chocolate. Pieces of continuity to cherish.
Powerful, Patry. Thank you for such honest writing.
I walked the same path with my father, years of this gradual good-by.
Sending light and love for your journey, and for your mother as well.
This is a beautiful and heartbreaking story. Such memories of then and now, and most especially, your mind-blowing phrase: "the fluid terrain of identity"--haunting and quietly explosive.
Robin: Yes, that familiar heart, familiar hand and smile...you say it so well.
Deborah: We sons and daughters who know this disease far too intimately are a large and growing club. Your presence and your words give me strength. xo
Jessica: Thank you for picking out that phrase--the essence of our greatest fears and the deepest mystery of our existence. It's what torments victims and their families most, but it's also what demands that we look deeper, give more, expand our own definitions of who we are.
When my mother-in-law died suddenly last July, we became my father=in-law's caregivers. This is a complex and intense time, as we grieve the loss of both parents, really. It is a time to honor my father-in-law, and to give him dignity in these days of his long life. Thank you for your lovely words.
Debra: "To honor him and give him dignity in these days of his long life." Can there be a greater blessing than that--for all of you?
damn, you made me cry before coffee. Your wonderful, beautiful post gave me goosebumps.
I didn't pray for a sister but pestered my mom asking for one. she'd just look at me with a smile that said, you must think i'm crazy. so i am eternally grateful for you.
This touched me deeply, Patry, having lost three of our parents now, in three different ways, but I think the dementia aspects were the hardest. I wish you all the patience and love in the world, and also the ability to forgive yourself for not being "perfect" - whatever that could possibly be. I never had a sibling either but isn't it a huge gift that we have all these internet friends now to hold our hands?
Dale: Thank you, friend.
R: So grateful for you, too. x
Beth: I remember how when your mother died--another much loved and loving parent of an only daughter. Reading your words as you navigated the sorrow with typical grace gave--and still gives me courage.
Kia ora Patry,
This is just beautiful, and hits home with me in so many ways, particularly in thinking of my father and the man I am trying to become. I am going to call my mom from across the miles this very moment. Kia kaha e hoa.
I am so glad you had such devoted and interesting parents, who loved you so. That is rare and precious, not all of us had that.
I agree with leslee, enter her reality. Don't reorient her, just be whomever she thinks you are at the moment. I always got on well with my demented patients, and their families often got them riled because they were upset that they were not recognized. I just played whatever part they seemed to want at that moment. Daughter, mother, friend, whatever. Learned a lot about them.
One woman was in bliss when a very realistic baby doll was given to her to hold. She had a very tenuous hold on any kind of reality. One burst out at an aide serving her dinner in the dining room, "You want me to suck your cock!?" Poor kid turned beet red, and I had to stifle giggles. He'd merely asked her what she wanted, and I have no idea where this came from.
I'm sorry you are all going through this. She is, however, living in an eternal now, which is a kind of zen ideal. You have the hard part.
I just don't know it is the most unrelenting disease..
I tagged you for a stylish blogger award and you might tap 7 others up to you http://www.spiritifelici.blogspot.com
Robb: The photos of you with your sons in the place you love so much say so much. So many blessings. Kia ora.
zhoen: My heart goes out to those who never felt loved by their parents--and to the elderly and sick, who are not cherished or touched with kindness by their family or caregivers. I think of that poem by Langston Hughes, which I may be paraphrasing:
Birthin is hard.
Dyin is mean.
Get yourself some lovin in between.
Mary: Thank you! I've been meaning to email you.
Sandy: Relentless is a good word for it. Thank you for the award!
Patry, I think of you so often during this journey. You and she are so fortunate to have loved each other so well, to have shared so many extraordinary moments of deep love and devotion. It was interesting to read that the games you played in childhood have been helpful to you now during this challenging time. Bringing her love now in those ways she might recognize is the same sort of loving distraction a mother offers her crying infant. Love always wins in one way or the other.
My mother was my playmate, too, which always delighted me. There were so many shared moments of love and affection and laughter - the kind that makes your belly ache and tears flow. She shared stories of her childhood and her life which would later help me understand my own. The secrets we kept, the laughter and glee, the kisses, the support she constantly offered, the countless moments of love between us sustain me now in her absence.
I did not have the opportunity to be the full time caregiver but know from the time I spent with Mother what a challenging road it is to travel. I keep you both in my heart and prayers and think of you each day. This post is a beautiful testament to the life-long love you share and cherish.
Sky: I have come back to read your lovely words a few times. Thank you for all you've shared. It has helped more than you know.
My heart goes out to you and your family, dear Patry. Sending many loving thoughts and prayers for you all.
I love the way you tell the stories.
I just happened upon your blog today and I love it. Your stories are so captivating to me. Can't wait to continue reading it.
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