A faucet opened behind my eyes the day the neurologist told my sister and me that our mother had Alzheimer’s. I stared at him dumbly and just cried.
It wasn’t grief I was feeling — that would come later — but utter disbelief, and a childlike denial that any of this could be happening to her. To me. Despite my growing irritation with my mother’s neediness and forgetfulness, I couldn’t grasp that she would ever cease to be the generous, self-centered, loving, demanding, cunning, creative woman I had known.
Until she did. Nearly three years later, this is our story.
“Be a daughter”
My mother, Audrie Gage
I visit my mother twice a week at her senior apartment, 3.1 miles from my house. (“It’s a 5K,” I like to tell her, even though she never asks me what that means.) I check her fridge for spoiled food. I drop her garbage down the chute. I vacuum the tiny white bits off the rug from the toilet paper she stuffs in her underpants to mask incontinence, a sign of middle-stage Alzheimer’s. I remind her to eat. I make her drink water.
The diagnosis came in February 2012. For some months afterward, Mom still did her own laundry and bought her own groceries. We went to our favorite coffee shop every Saturday morning, and then I’d leave her there (leave her!) to finish her muffin and visit the library across the street while I went off to my weekly women’s group.
More recently, as Mom has lost the ability to navigate her surroundings, I’ve picked her up every weekend and taken her wherever I need to go — to the bank, the hairdresser, the pharmacy, the dog park — on the assumption that the stimulation will be good for her.
What I haven’t done is be her daughter.
Only once since the diagnosis have I simply sat with my mother: watching TV together, eating cookies, applying lotion to the cracked soles of her feet. Never have I asked in anything more than perfunctory tones how she is doing or whether she understands that she has Alzheimer’s.
Even more out of character for me — a professional communicator, a former journalist — is that I no longer can engage her in conversation. Our once wide-ranging talks have narrowed to the same rote questions about her checkbook, her next meal and whether Hillary Rodham Clinton will run for president. (I occasionally remind her that she supported Obama over Hillary — and over my objections — back in 2008.)
“Don’t just be her caregiver. Be her daughter,” the manager of the senior housing complex told me shortly after Mom moved in. That requires a measure of patience and compassion I can’t access with any consistency.
Performing tasks, keeping her life organized, arranging for the health aide who now washes Mom’s hair and doles out her daily pills feeds my workaholic nature. It also keeps me from — dare I say it? — leaning in and having to face the hard truths of her decline. “Can you be in denial if you know you’re in denial?” I ask my friends, feigning an amusement I don’t feel.
If I stay within my comfort zone of competence, I can hold on to the belief that Mom will never slide into Alzheimer’s final stage — when she’s immobile, uncommunicative and unaware of who I am. The daughter who was her favorite, her baby girl.
“Are you my mother?”
My mother was diagnosed with Alzheimer’s — the most common type of dementia — six weeks before her 86th birthday. Half of seniors over age 85 experience some form of dementia, a statistic that had me question whether the specialists at the University of Minnesota Memory Care Clinic weren’t just “medicalizing old age.”
That isn’t proving to be true. When my three siblings visit from their respective homes in San Francisco, Denver and Boston, they’re aghast at the changes they see in Mom: her growing confusion, her fixations, her toddler-like refusal to eat, which strikes me as her last-gasp effort at control.
Mom used to knit complex cabled sweaters. She took pride in following the news. She liked to read and walk, to see movies and plays, to travel and watch cop shows on TV. A pretty woman whose features were divvied up among her daughters, she liked to shop at Dayton’s and dress in style.
Our annual trips to New York during my early adolescence were lessons in both fashion and fine art. Thanks to her, I saw Katharine Hepburn, Ben Vereen, Lauren Bacall and James Stewart on Broadway. I heard Carmen at the Met. I took dance lessons at Luigi’s Jazz Centre and bought an outfit at Saks Fifth Avenue.
Today, I have to remind Mom to change her clothes. “It’s like you’re the mother now,” she says cheerfully when I instruct her to wear a long-sleeved shirt in November. A chronic complainer who nursed her grudges like a dry martini, Mom has mellowed as her brain has lost its “stickiness,” to quote the terse neurologist.
After tests betrayed the early-stage Alzheimer’s our mother had been hiding, the doctor told my sister Penny and me that we would feel the symptoms of the disease. “Your mother will be fine. She thinks she’s fine,” he said. “You’re the ones who will have trouble.”
Penny still can quote the word-association game the neurologist used to diagnose our mother:
- River
- Daughter
- Table
He’d ask Mom to repeat the words every five minutes after he had distracted her with other conversation. It was a quiz, a trap, and we had to watch as she got snared. The clinic was by a river. She was at the appointment with her daughters. She was sitting at a table. “I’ll never forget those words,” my sister says.
“And acceptance is the answer”
It’s taken months for me to work up the nerve to write this essay, to see the underside of my moodiness and distance — a grownup child’s unwillingness to let go of her mom.
Even at a stage when she still recognizes me and remembers the basic outline of my life — that I have a husband and two grown sons and a profession — my mother has lost her innate maternal ability to comfort, to serve as refuge.
My mother cannot mother me. She is a noun now, not a verb. And when I allow myself to open the door that her diagnosis cracked and peer down the dark hallway — to wrestle with the fear and the denial, the anger and the injustice — then I recognize the emotions as the grief they truly are.
I miss my mother, and she’s never coming back.
Learn more: http://alzheimers.about.com/od/whatisalzheimer1/a/What-Is-Alzheimers-Disease.htm
The Middle Stages: Between Midlife and Old Age 
Nice job. I could feel how difficult that was for you. Did it lighten your burden?
Mary
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Thanks, Mary. Yes, the process of writing this did help, and it forced me, finally, to start to research this disease.
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She is a noun now. Not a verb.
Your words touched me deeply, Amy. Brava for your courage. Blessings for your journey.
Tina Cavitt
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What a beautiful sharing of your experience with Alzheimers and your mom. Thank you for taking the time and walking through the pain to write about your experience for us.
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Very moving and insightful. I had the wonderful experience on this year’s 2-week visit with my mom in Germany that my mother actually had come back. When before, she was mostly vacantly smiling, this time she was a real mother, not cognitively but emotionally. Never say never, Amy! One of the very hard things about Alzheimer’s is that there are no certainties. It keeps changing, and I take my gifts as they come and try to stay away from expectations which is very hard.
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My mom had Pick’s Disease for the last several years before she died in 2004. She became childlike and sweeter than before. I was often impatient but was drawn to see her in the nursing home and felt fulfilled handling her affairs. You only go through this once. I wish I would have known some things I came to learn. But I probably wouldn’t have done things much differently.
Thanks for a well-written, honest piece.
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Thank you, Amy. My mother had Alzheimer’s also and died in 2005. I held her when she took her last breaths. Her swallowing ability had deteriorated, and she developed pneumonia from aspirating something. She died 6 days later. During her decline, she acted in ways you described. But a few things remained. She loved traveling and had managed to make her way to some pretty remote areas. In assisted living, many of the aides were from faraway places. She loved them, and they loved her. The teased each other, which blew me away. She missed her independence, and she exerted it like your mom in whatever ways she could. One of those was NOT participating in social events. It puzzled me, because she loved meeting people. Later, I realized she was doing the “work of the dying,” which is quieting themselves and sleeping a lot. In retrospect, I wish I hadn’t driven myself crazy trying to “improve her quality of life.” I just thought I’d pass that along in case it happens to you. It’s really OK to let them make their peace in whatever way makes sense to them, which may show up in strange, frustrating ways. The ways you describe caring for you mom are lovely. Don’t cut yourself short. You’ll know when the time is right to just be a daughter. And even if it’s 5 minutes worth of “just be a daughter” time, it will enrich you and be just what your mom needs. I will say that holding my mom when she took her last breath was one of the most remarkable moments of my life. It somehow felt like completing a strange circle. She held me soon after I drew my first breaths. I held her as she took hers. I swear it felt like this giant bubble of love and warmth emanated and encircled us when she died. Other than giving birth, nothing has felt quite so profound in my life. Beaming support your way. Feel free to contact me anytime, if I can be of help.
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This is beautifully said, Kathleen, and really helpful. Thank you. I will be in touch.
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Amy,
What a moving piece! It is never easy grappling with a devastating illness like Alzheimer’s in someone we love. I lost my dear aunt Elena to this disease several years ago, and it was so hard to watch her decline. I can only imagine the grieving that you are experiencing. My thoughts and prayers are with you.
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Just finished reading Still Alice, so this is much on my mind. Thanks for sharing your own experience with your dear mother in such an eloquent way.
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Beautifully written, Amy. Our relationships with our mothers are complex even without the burden of illness. Wishing you well.
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I see the competent daughter role as a loving one. My sister is often the same with my father, to whom she is extremely close. He’s deteriorated physically and mentally. I admire the way she always knows what he needs — to see the cardiologist in Minneapolis, to change his shirt. She is the one who talks to the doctors, pays bills and makes financial decisions. I see this competent approach to caring as love. We all have ways of protecting ourselves. I remember Melanie at Sun Moon Yoga saying sometimes our hearts are too open and we need to close them just enough to hang onto ourselves — she made a gesture like the turning of a handle near her heart.
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I have enjoyed many of your articles over the years, this one included. Your last sentence was so heartbreaking and I felt the same way until my Dad died and actually was gone, which is when I came up for air and realized he had been there, being my Dad, all along. I just hadn’t seen it. http://www.startribune.com/opinion/112403879.html
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It is so sad to hear about Audrie. I have known her for years when she would trek out to San Francisco. She would stay at The Granada Hotel and then at The Broadmoor. I looked forward to her visits and especially her stories about walking the Golden Gate Bridge. My thoughts are with Audrie and her family.
Ken R. Johnson
Property Manager
The Broadmoor in San Francisco
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Amy – You and I have known each other for years. What I find fascinating about your story is its individuality and universality. As I cared for my mother in the last 7 years of her life, I too was similarly conflicted over my childhood disappointments in our relationship while being the one responsible for her, the one who had to show her so much intimate care. The best advice I received during this time was to lie in the warm water of this experience and let it wash over me. I am here for you. Gina (Washburn) Franklin
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Great story, but not Alzheimer’s patients feel fine. I was my wife’s caregiver for 4 years before memory care. My wife has early onset and cries excessively, esp when I leave after I visit and for days after . It’s such a brutal disease, she lost her ability to walk in less than a week, can’t remember she can’t, and tries to but constantly falls. Paul Richter
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