Tag Archives: Alzheimer’s

‘Motherhood: All love begins and ends there’

I just saw a friend at the dog park whose mother died about two weeks ago. I had seen the news on Facebook. Instinctively I greeted her with a warm, wordless hug, the one that says, “I’ve been there. I understand.” The greeting that has become all too common among women in later middle age.

Like my mother — who died on September 24, 2015 — this woman’s mom had suffered from Alzheimer’s disease. We commiserated over the reality that our mothers had not been themselves for years. “I have to go back to 2011 or even 2010 to remember when Mom was really Mom,” I told her.

And for a moment it was back, the wistful sadness I have held at bay for 13 months. As I looked at Jill’s tight smile and moist eyes, as I listened to her describe crawling into bed with her dying mother — allowing her mother one last chance to be a mom — I felt my stomach drop and my throat catch. I wanted to see my mother one last time.

Is this grief? I can’t tell you. I don’t know how to grieve. All I have done since she died is to keep busy, keep moving forward.

“Grief can be exhausting or a relief,” says a handout from the hospice whose nurses cared for my mother in her final days. A bereavement coordinator sent a large refrigerator magnet that I stuck in a pile of papers. It reminds me, now 13 months later, to:

  • Take some walks: Check. I walk to work.
  • Stick to a routine: Check. I’m a creature of habit.
  • Create soothing bedtime rituals: Check. I go to sleep at night listening to music or a podcast.
  • Do some activities you enjoy: Check. I’ve been practicing yoga more often since Mom died, and my husband and I rescued a wildly affectionate puppy at the Animal Humane Society 10 days after her funeral.
  • Expect a wide range of emotions. OK, but what if I can’t find them?

I have dreamed once about my mother in the year-plus since she died; she was old and gaunt, and she had cancer. Maybe my guilt was speaking to me. I was relieved — and shocked, and sad, and scared — when she was diagnosed with blood cancer a mere four weeks before she died. For her, it was a release from the indignity of her decline. For me, it was the end of having to watch it.

My younger son, Nate, recently asked for the code to my iPhone. I told him it was the date of Mom’s death. He paused and turned to look at me. Nate is a truth teller, and I cherish our feisty and fearless conversations. “Do you think you would cope with this better if the code was her birthday instead?” he asked.

Good question, though I never did respond. First, I have to think about what mourning means.

mom-scattering

One year after our mother died on a windy autumn night, my brother posted a photo on Facebook of himself and Mom. They look young, happy and vigorously alive. “We need happy memories today,” I responded. But in truth, I cannot access them.

My memories of Mom are either grim or morbidly amusing, like this anecdote I jotted down in August 2012, six months after we learned she had Alzheimer’s: My brother consulted a colleague whose mother-in-law has advanced Alzheimer’s. The woman told my brother that obsessions are common at this early stage. We should be grateful that our mother is obsessing about her checkbook, she said — even though it drives us crazy. Her relative became obsessed with constipation, and talked people into giving her laxatives and prunes daily. “I laughed, too,” my brother said as I tried to choke back my guffaws. “But my colleague’s father-in-law had to clean up the bathroom every day.”

My friend Janey, who was like a daughter to my mom, recounted the details of caring for a frail, 91-year-old parent only weeks before her own mother died. I was reminded of the daily schedule, the frequent phone calls, the sense of helplessness, the constant worry.

Now, all I have left of my mother is photos and the purposeful distribution of her possessions. “It’s so unreal,” I wrote a former colleague whose mother died recently. “The person who has loved you unconditionally, who’s known you literally all your life, who was your greatest cheerleader and supporter — suddenly she’s gone!”

I sift through notes, the abstract musings that I can’t seem to stitch into a cohesive whole. None of them are dated, which accurately reflects the confusion and unreality of the three and a half years when Mom gradually slipped away and then suddenly, traumatically left us, gasping for air, bone thin and incoherent in a morphine haze.

Here is where I can start to pinpoint my version of the stages of grief:

  • Reflection: “As my mother goes blank behind the eyes — as the light of her intellect dims — I am thinking about my role as a caregiver and about how it didn’t end when my children were grown. I never dreamed that I would have to care for her.”
  • Resentment: “My aunt died in her sleep in June, with no apparent warning. Hard as I know that was for my three cousins, I envy the simplicity, the lack of ambiguity. When will this be over?”
  • Resignation: “In all the years of dealing with my mother’s weaknesses and neediness, I’ve never thought about how much I needed her.”
  • Regret: “I’d like to do it all over again, without the whirlwind and the fear. I’d like to be more present for her dying.”

I didn’t want to lose my mother, but it was time for her to die. I still wrestle with that potent mixture of regret and sheer relief.

“It’s a complicated grief,” says the minister who performed Mom’s funeral service last October, “because dementia is an incremental death. She was both here and gone. You experienced her physical presence but her psychological absence. There’s no possibility of closure or resolution.”

My companion and my confidante, my caregiver and then my charge, my mother was present for every significant moment in my life. I have to live with the reality that I was often at my worst with her.

Maybe, in the end, that is where grief leads us, toward perspective and acceptance, seeing our loved ones and ourselves as perfectly human, imperfect people. “Yes, Mother,” wrote Alice Walker. “I can see you are flawed. You have not hidden it. That is your greatest gift to me.”

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Alzheimer’s: A Daughter’s Journey toward Acceptance

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

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?”Mother Book

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