Taking Care of Mom is a performance piece written by my wife, Barbara Mather. It is a powerful piece that will resonate with anyone who is taking care of a parent in their last years and, perhaps, be helpful in getting through this difficult period. Taking Care of Mom is also available in doc format here.
Taking Care of Mom
a performance piece
written and performed by
Taking care of Mom premiered at the Oak Street Theatre, Portland, Maine ,October 2, 1996.
Taking Care of Mom
© copyright by Barbara Mather, September 4, 1996
[music "Catch a Falling Star" sung by Perry Como.]
"Where did you come from, baby dear?
Out of the everywhere into here..."
September 4, 1947 Canonsburg Hospital, Canonsburg, Pennsylvania, Hometown of Perry Como...
Dr. Huey says to my father, "The hospital is full, your wife may have to go into the `colored ward'."
My father says, "That won't bother her any".
My mother in labor...
Dr. Huey says, "Your husband tells me you wouldn't mind being in the `colored ward'; is that true?"
My mother, never known for her singing abilities, replies,
"JESUS LOVES THE LITTLE CHILDREN
ALL THE LITTLE CHILDREN OF THE WORLD
RED AND YELLOW, BLACK AND WHITE
THEY ARE PRECIOUS IN HIS SIGHT
JESUS LOVES THE LITTLE CHILDREN OF THE..."
And that's the wave that I rode in on...September 4, 1947, Canonsburg Hospital, Canonsburg, Pennsylvania, Hometown of Perry Como. Third born to Benjamin Whitting and Marjorie Josephine Hackett Jones. First came Marjorie Emily, five years later came Benjamin Whitting III, Benjy; seven years later came me, Barbara Josephine, the baby.
No matter how old I was, 10, 20, 30, 40...my mother always introduced me as, "And this is my baby Barbara". If I rolled my eyes or protested, she always said, "No matter how old you are, Barb, you'll always be my baby."
I never wanted to be my mother's mother. I am the daughter, the baby. Only now I am the mother too. Every morning starts exactly the same-- after a shot of insulin, Mom shuffles with her walker to the table, I clean her hands with a damp washcloth, she sits down to a breakfast of Special K, toast, 1/2 glass of orange juice, 1/2 glass of prune juice and coffee-black. When she sits down, feels for the napkin and blows it open, I am filled with an inexorable sadness. Sadness that my mother never sees as I move through the day efficiently and with good humor doing what needs to be done, creating and maintaining a manageable environment for her.
I have been caregiver to my mother for the past nine years. When she first moved up here to Maine, two years after Dad died, after losing most of her vision to macular degeneration, she was still independent in many ways. She lived by herself, did some cooking, light housekeeping, rode the community action bus to buy groceries, walked to the post office, the hairdresser. I took care of financial matters, handled doctors' appointments, drove her places, and checked on her every day. She was eager to learn the ways of adapting to life with low vision. A voracious reader all of her life and now legally blind, she taught herself, with the aid of special glasses, to read with the peripheral vision in her left eye. She listened to Talking Books, but was much happier reading for herself. Laser treatments stopped the bleeding in her eye and stabilized what little vision she had left.
I have always said that my mother has an indefatigable spirit. I have always admired that spirit, that spirit that helped her through her recovery from alcoholism 25 years ago. The spirit that helped her to stop smoking-- cold turkey--after 50 years of chain-smoking unfiltered Chesterfields. The spirit that offered me totally unconditional love.
All seemed well in Mom's new life until a bout with pneumonia put her in the hospital where she was diagnosed with diabetes. And then the parade began: a broken hip, loss of hearing, ulcerated toe, more pneumonia, a chronic lung infection-- an atypical microbacterium, broken arm, prolapsed uterus, ulcerated bottom, incontinency, drug reactions, drug allergies, violent diahhreas, senile dementia-- and now I can't find my mother.
I think it was the broken hip that really changed things. I think that's when she turned it over to me-- her life, I mean. Actually, if I think about it, Mom has always been a puzzling combination of helplessness and fierce determination. A life of denial combined with very strong notions of what she wants and how things should be.
I walked into Mom's apartment one day. She was sitting at the table, arms crossed on her chest, these two white hats on the table in front of her. She was obviously awaiting my arrival.
"Do you mind telling me why I have two hats that are exactly alike?" she asked?
"Sure, I'll tell you why," I replied.
"This hat we bought somewhere some time ago. And this hat we bought about a month ago; we were at the Trading Post, I was looking for shorts, you were in another area, you called to me holding up this hat. `Barb, Barb,' you called, `look at this hat; I'd like to have this hat.'
"`But,' I said, `you already have a hat like that.'
"`I don't have a hat like this,' you said.
"`Yes you do,' I said, `you have one very similar to that at home.'
"`I've never had a hat like this,' you insisted.
"Now not wanting to be the wretched killjoy daughter I came over to you and said, `Fine, buy the damn hat'."
My mother, two white hats in front of her, quietly responds, "Oh".
"Well," I said, " they're not exactly alike."
My mother, legally blind, says, "Well they look exactly alike to me."
"Well," I said, "this one is plain and this one is eyelet."
My mother drew herself up, looked me in the eye and said, "I knew there was a reason I wanted that other hat."
Mom is 82 today. She's here, but I can't find her. I can't find the woman who cut up apples into little pieces and brought them to me while I was curled up on the sofa, home from school and aching all over. I can't find the woman who drove our '52 Chevrolet so confidently over Pennsylvania roads en route to visit Marjorie in college. I can't find the woman who polished furniture with Lemon-scented Pledge, but always stopped work at the bookcase distracted by a favorite old book--Collected Poems of Sara Teasdale or Sara Crewe or What happened at Miss Minchin's. I can't find the woman who taught school in NYC, the woman who organized blood banks for the Red Cross, the woman who led a literary discussion group for patients at a veterans' psychiatric hospital, the woman who spoke to AA groups all over New Jersey from wealthy suburbanites in Westfield to inmates at the women's prison in Rahway; the woman who led church groups, civic groups, scout troops, and garden clubs.
I can't find the woman who stood tall in 4 inch heels under her 5' 9" big-boned frame-- who wore black sheath dresses with wide brimmed picture hats, big clip earrings, and a chunky gold bracelet that Dad brought home from a business trip to Paris. I can't find the woman who smelled of Tabu' and did the Sunday New York Times crossword puzzle in less than an hour-- in ink.
THAT-- is my mother. Only now I can't find her.
"Oh my," Mom said as we shuffled down the icy path leaving the doctor's office, "oh my, I'm glad my mind is leaving before me."
She hangs onto me with all of her weight to keep from slipping-- all 170 lbs. of her. I feel her weight every day, the weight of her body, the weight of her life. She's glad that her mind is leaving before her. She doesn't want to be around for this; and I don't blame her.
"What state are we in?" she asks me one morning between bites of Special K. A state of falling apart, a state of utter confusion, I think to myself as I calmly reply, "The state of Maine".
Mom doesn't know what state she is in-- and Maine just isn't the only answer.
Amid trips to the internist, the orthopedist, the audiologist, the opthamologist, the gynecologist, the lung doctor, the foot doctor... Amid filling syringes, filling prescriptions, cooking squishy food, recharging hearing aids, searching for lost hearing aids, matching doctors' bills with insurance forms with Medicare forms...Amid wiping bottoms, smearing on salves, emptying commodes, and making sure that her beads match her skirt... Amid Wintergreen Breathsavers, Wheatsworth crackers, sugar-free Lime Jello, and pink diet ginger-ale... I desperately hold on to myself...
Mom holds on by never removing her pearls and with Steno Pads and Sharpie Pens. [Read from steno pads]
She holds onto time by wearing a watch with numerals large enough for her to read. Nonetheless, she asks me constantly-- sometimes 10 times in 5 minutes-- "What time is it?" "What time did you say it was?" "Pardon me, could you tell me the time?" Time-- it simply doesn't connect for her anymore. The other day she took the clock off the kitchen wall. With a bigger clock, she thinks she'll know better what time it is. She now carries the kitchen clock in the basket of her walker. Still, she asks me constantly-- "What time is it?" "Pardon me, could you tell me the time?"
She doesn't know what time it is; she doesn't know what day it is; she doesn't know what season it is and on our drives she looks for maples turning red in February, May, and July. She doesn't remember a town that she lived in for 20 years; she doesn't always remember her grandchildren's names. But two days after Richard Nixon died she was anxiously awaiting my arrival to ask, "Is today the big day they're flying the body west?" "The body?" I said. "Oh, you know," she said, "Nixon's!" "Yeah, I guess so," I shrugged. I then went into the kitchen to prepare a meal. She was uncharacteristically silent for ten, maybe fifteen minutes when she said, "I just wonder what the girls think of all this." I walked back into the living room. "Girls? What girls are you talking about?" I asked.
"Oh, you know, Julie and Tricia!"
I carry Mom's pocketbook now. She used to carry it on her shoulder, across her chest. It held her reading glasses, sunglasses, wallet, money, tissues, sugar-free Breathsavers, Lifesavers-emergency relief for low blood sugar reactions, keys to her apartment and a faux tortoise shell compact. When she started hanging the pocketbook around her neck like a feedbag, eating the Lifesavers instead of the sugar-free Breathsavers, forgetting the sunglasses, losing the keys, and stopped dealing with money-- I started carrying the pocketbook-- out to the car. In the car she has her pocketbook in her lap to hold onto-- with the wallet, empty, the sugar-free Breathsavers, tissues and the compact. I now put the sunglasses on her as we step out the door of the apartment; she always wears the reading glasses around her neck though she has stopped reading. I carry the keys, the money, and the Lifesavers.
Last Wednesday as we were driving to the doctor's she took out her compact, and performed the ritual she has been repeating for least fifty years--that of powdering her nose. With the compact still open she sat, staring out in front of her, then turned to me and said, "Now, do I wear lipstick?"
No, Mom, not anymore.
I wash Mom's back almost every morning and every time she says, "oh boys, does that feel good." I rub lotion on her feet and long legs and think of her -- coming of age in the 20's-- bobbed hair, unbuckled galoshes, drinking in speakeasies and doing the Charleston.
I comb her hair and am always astounded at its thickness, its sheen. Hair like hers is what I want at her age. Much I do not want-- the body gone awry, the mind living in the past. How can she sit there day after day not moving? Her mind flipping to the past-- the same flips over and over and over and over. And it's the resentment flips, the grudge flips, the "I'll never forgive her for that" flips that have become the focus of her memories. "Did I ever tell you about the time...," she begins. "Yes," I reply, "you've told me about that many times." In fact, I want to say, you've told me that story about 100 times and if I have to hear one more time how you will never forgive your mother for not letting your father take you to see his relatives after his recovery from TB at Saranac, I am going to SCREAM! Let go, Mom. Just let go.
CAREGIVING-- giving care to my mother. What it has become is an inordinate amount of attention given my mother's body parts and bodily functions.
IT'S NOT SUPPOSED TO BE THIS WAY!
My mother's uterus, her womb, my first house is falling out-- it is prolapsed. The visiting nurses keep pushing it back up inside of her, but it doesn't stay; it just keeps falling out. So I take her to the gynecologist for the first time in her life-- her babies were delivered by GP's-- to be fitted for a pessary, a device to hold her uterus inside her body. We have to go many times as the doctor tests various designs and sizes, in order to find the right size and design for Mom; one that will stay put. Mom is afraid, she doesn't really understand what is going on though I've explained it all over and over; her fear makes her even heavier as the nurse and I maneuver her onto the table, get her feet positioned to go into the stirrups. She clutches onto me afraid of falling off the table; the nurse leaves and for what feels like hours for the doctor to appear, Mom's bladder lets go and the table and floor are flooded with urine. Standing in urine, I yell for the nurse to come and help, Mom clutches onto me even tighter, whimpering over and over, "my back hurts, my back hurts"-- inside I am yelling and screaming and crying as I calmly try to assure her that, " it won't be much longer".
In between visits to the gynecologist (it took 3 visits to get a pessary that worked) I rub estrogen cream on the uterus hanging out of my mother's body. It feels harder than I imagined. Rubbing cream on the hard shell where I began-- This action, this connection is too loaded for me, too overwhelming-- I am rubbing estrogen cream on my mother's uterus!
What do you do with this? Where do you file this?
I feel so stuck. My shoulders feel tight, my intestines feel lumpy, my eyes heavy-- I yawn, yawn, yawn, trying to find air--air to climb those stairs. AIR-- to unweigh my legs as I move about the brown-carpeted rooms doing the same things over and over-- as my mother repeats the same words over and over.
I need to know how to distribute myself. Do I give her everything now? Or do I dole myself out in little pieces over endless days?
I climb the stairs every morning.
Hoping I'll find her dead.
Instead she dozes in the chair, to the murmuring voices of the "Today" show.
Now is not her time.
I just need to know... when?
My mother is losing her body and her mind and I am the witness-- the authenticator. I didn't choose this-- actually I guess I did-- but I didn't know then how long this would go on-- I didn't know how alone I would feel-- I thought Marjorie and Ben would be here more--I didn't know how incredibly exhausting it would be.
I never wanted to be my mother's mother. I want to be there for her, but I want my life too. I don't know how much longer I can do this.
I've been looking into alternative care situations for Mom. Agnes has been a wonderful part-time caregiver for Mom, but that's just what it is-- part-time-- we can't afford to have her more. Boarding homes are out of the question as Mom needs to be told when to do everything; and no longer can tend to her basic needs independently. A nursing home seems to be the only answer; but they are so expensive-- over $3,000 a month. That means draining all of Mom's savings and then going on Medicaid-- but will she be eligible for Medicaid-- the guidelines keep getting stricter and stricter. And if we're going to spend that much, why not hire more caregivers and keep her at home-- but if we did that we'd still have to go into her investment principle, and then her interest income would drop; and we still need money for rent, food, electricity, phone, drugs, life-line rental, incontinency pads.
A huge cloud of guilt hangs over me as I reject the idea that she could live with Mort and me. My grandmother Dodie, my mother's mother, moved in with my parents when I was 11, after my grandfather died. Those years co-incided with Mom's rock-bottom alcoholic years; and Mom and Dad separating. So I guess that this is where I draw the line-- besides which we would have to build something; our house isn't set up for what would be needed.
I've called the nursing home where Mom stayed for a couple of months of recuperative care after breaking her arm a few years ago. They have a kind staff; it's clean, filled with light. As Mom said, "If you have to be in a place like this, this isn't a bad place to be." The social worker and the head nurse are coming to Mom's apartment to do an assessment to see if Mom will be medically eligible for Medicaid in case her money runs out if she goes into the nursing home. I tell Mom everything I'm doing. She understands and is accepting as I explain it all to her-- over and over again. "You know what's best, Barb," she says.
Mom is borderline eligible. The social worker and the nurse visited Mom's apartment today. I sat on the sofa, dumbstruck, as Mom gathered all the wits and aplomb she could muster-- she sat like a queen in her rose-colored chair, offering her guests cookies and gingerale, making dry, witty remarks, playing every bit the gracious hostess.
"Do you wash yourself, Marjorie?" they asked.
"Oh yes," she replied.
"Well, not really," I said gently.
"What do you mean?" she said, "Of course, I wash myself."
"Do you use the toilet, Marjorie?" they asked.
"Oh yes," she replied.
"Well," I said, "not always,Mom,that's why you wear those pads."
"Oh yes, those. Well now and then I might have a little problem."
"Do you dress yourself,Marjorie?" they asked.
"Well,not really," I said.
"I dress myself," she said, "oh sometimes I might need a little help."
I was able to tell the social worker when we were alone in the kitchen that Mom is washed every day by me or a home health aide, that she is urinary incontinent; and that the only dressing she does is to take off her clothes and put on a housecoat, sometimes right after I've gotten her dressed for the day.
"It's wonderful that you have created such a manageable environment for your mother", the nurse and the social worker tell me as they're leaving; and "what a wonderful lady your mother is".
So why do I feel like the wretched killjoy daughter?
She's making phone calls in the middle of the night. She's taking all the food out of the freezer and trying to eat it. She's throwing her underwear in the trash. She'll only sleep in her chair, she's afraid of her bed. She's losing control of her bowels.
I try not to think anymore-- try not to think about what I am doing-- just go through the motions doing what needs to be done. Just don't think-- just go through the motions, doing what needs to be done, doing what needs to be done, doing what needs to be done--
But it is not working. I cry all the time when I am not with her. I just get in the car and cry. Two days ago I had to pull off the road; I was sobbing so hard I couldn't see. Sometimes I just moan-- anything to relieve this feeling like a baseball bat being driven into my belly.
Mort, who has been so there for me through all of this, who has been my shoulder to cry on, my release valve, is getting more concerned. He sees me really starting to lose it. He tells me that I have got to do something-- that I can't go on like this. He says that he is going to call Marjorie and Ben to tell them that I am falling apart, the care giver is cracking; and that our mother has got to go into a nursing home.
The nurse and the social worker come again; and though Mom is still borderline eligible for Medicaid, they see a definite decline in the five months since their first visit.
It is time. I've called Marjorie and Ben.
Mom moved to the nursing home last week. I thought I would feel so relieved. Cleaning out her apartment on Monday I wasn't prepared for the feeling of just plain sadness. The pink flowered pitcher, the chocolate pot, on the kitchen table made me realize how sad I felt.
When I visited Mom today she said, "I'm sorry, but I'm just not happy." How it weighs on me! But the choices have run out. This is it, Mom, you have got to make do. I was no longer enough--even with extra help, aides, visiting nurses. Two months ago I was sobbing every day-- I was no longer enough. I was filling in all of your gaps and the gaps just kept getting wider and wider. My life was holding you together-- making you happy--I was living your life and I was disappearing-- I couldn't find me anymore. I had to choose-- you or me. And Mom, I had to do it-- I chose me.
I have been trying to rescue my mother for the past ten years. But I couldn't help her anymore and keep us both above water.
I would have a lot easier time in my co-dependent world of martyrdom if I had chosen her. It's so hard choosing me.
Jean sent me an article from the NEW YORK YIMES MAGAZINE by Mary Gordon titled "Our Parents' Keepers". In the article she writes with reference to her mother in a nursing home, "Her power over my life is enormous." These words resonate in every cell of my being. Gordon writes that every time after visiting her mother in the nursing home she just has to go home and go to bed. I am relieved that I am not the only one.
I ran into a former neighbor of Mom's at the Shop and Save today. She had been to visit my mother at the nursing home. "Oh I couldn't believe how she has failed-- her stomach looked so bloated-- her room is so small." I could barely listen as the cries of "BAD DAUGHTER" filled my brain. Well I don't like the situation but there it is. I don't like that my mother is physically, mentally falling apart, but I didn't make it that way! For ten years I tried to stop it, I tried to ease it, I tried to control it, but I could not, cannot.
I have given much to my mother-- I have given her my love, I have treated her with kindness, dignity and respect; I make her laugh. She gave me life for which I am eternally grateful, I am so thankful that she is the one who is my mother, that she was the person who raised me, who gave me the where-with-all to be a good citizen of this planet, to appreciate the uniqueness of each human being, and to find remarkable beauty and grace in the everyday. I have loved her and I have cared for her. I celebrate her spirit.
I cannot make life perfect for her.
They've put Mom on a mood elevator and now an anti-anxiety drug. If I was still her primary caregiver, she probably wouldn't need these drugs. I just have to keep breathing.
I've been cast as Mdme Ranevskya in "The Cherry Orchard". It's the first play I've been able to do in three years now that Mom is in the nursing home. Mom remembers seeing Helen Hayes in the same role in New York in the 30's. She is thrilled that I am acting again. "All your life, Barb, it's what you've always wanted to do," she says.
Mom died on Friday, June 30 at 4:00 am-- exactly halfway through 1995-- in her bed at the nursing home. At 4:30am the birds were singing loudly; later that morning three moose grazed in the field behind my house as Marjorie and I sat and ate breakfast; and that night the coyotes howled at a sliver of a moon.
We knew that she was dying five days before so she was surrounded by family and people who loved her. Every time someone new would come and she could still be roused, she'd open her eyes, look at them and say, "Oh, what a surprise!" Suzanne had tucked a little glass bird under Mom's pillow as she was dying-- "To help you fly, Gram," she said. When she died the nurses tucked the little bird into her hand that rested on her chest.
I miss my mom. I miss her presence. I miss her hands and her arms. I miss our exchange when I walked into her room, "Oh, Barb, it's you. Where did you come from, baby dear?" "Out of the everywhere into here," I'd reply. I miss her smell of Coty's Muguet Lily-of-the-Valley. And when I parallel park in a tight space with no adjustments, I miss someone saying, "Oh, Barb, you're so masterful." I miss my mom.
Dreamed last night that Mom and I were leaving a store in a crowd of people. I went to talk to a friend; Mom went out the door by herself, she was headed for the curb, she would fall off, she can't see. I ran to save her, feeling guilty for talking to my friend.
Dreamed last night that I was walking backwards, Mom was holding onto my held out arms. She was using me for a walker and her insides were falling out. Chunks of tissue and blood fall to the ground as I run to get a pad to catch it; but I am not quick enough.
Dreamed last night that Mom called me in the middle of the night and in a weak little voice said, "I'm sorry, but I'm just not very happy here."
Dear Mom, out in the everywhere,
I didn't know it would be like this. I thought it would be so much different. I thought my time with you was complete. I thought I would just have the memories, little times to think of-- tucked away in my heart-- pictures of you. I never thought you would be here night after night still needing my help. Never asking for it, but always needing it.
Mom, I tried to save you for so many years, and I did save you, but parts of you got left behind with each save. I stored those parts, I tried-- I made them part of me so that the rest of you could keep on going. But it all comes down to one thing. I really can't save you-- and I can't make things so that you'll be happy.
I want to think of you-- of you in me-- of the woman I am because of you. But, Mom, I am not coming to water your plants or to take you for a ride-- so please-- stop calling me in the middle of the night.
Marjorie, Ben and I met in April in Avalon, NJ to scatter Mom's and Dad's ashes. Avalon-- where they spent their last ten years together-- ten sober years. We put most of Dad's ashes at the edge of the woods overlooking the 17th hole of the golf course where he go his first hole-in-one at the age of 74. We scattered Mom's ashes, and a little bit of Dad's, in her beloved sand dunes, overlooking sandy beach for as far as the eye could see. And now-- surrounded by seashells, smooth stones, crashing waves, screeching gulls-- she has stopped calling me in the middle of the night...