Although she is still alive, at seventy-two, she suffers from a progressive form of dementia that has robbed her of speech and, even more painful for me to witness, the ability to dress herself. For over forty years, as owner of our town’s hippest fashion boutique, she told everyone within earshot how to dress, her daughter included. No longer in her trademark Love That Red nail polish and Armani black pantsuit, she sits locked in her head and strapped in a wheelchair, most days in sweatpants and with hair that’s braided off to the side, which may be a convenience for her aides but surely is doing no favors for my mother. If she could return to her right frame of mind for even an instant, she would scream bloody murder. And then reach for her lipstick.
So how am I to keep up appearances? I am essentially without a mother and all the advice (solicited and un-) this title implies. For the past four years, I haven’t had her to remind me to “floof” my hair (which, when I don’t, makes me look like I have, her term, “cradle cap”). Nor is she available to tell me not to stoop (“you’ll get a hunchback”), not to wear pale lipstick (“you’ll look like a cadaver”), and not to wear boxy shoes (“you’ll look like you have club feet”).
And since Leo came into the picture, I am painfully aware that so many of us women who have kids later in life are motherless at such a significant time. It’s a uniform I wear daily, even underneath the most beautiful leather jacket on earth (which incidentally, my mother would have berated me for leaving behind).
On days when I want to know about my own infancy, if I, like Leo, disliked green beans as a baby or how old I was when I stopped napping, I think: how can I do any of this without her? It’s harder to imagine the bigger losses—the fact that she won’t be at Leo’s wedding, as my grandmother was at mine. Or that she won’t be able to offer Leo a rare glimpse into his mother’s past. She won’t have the distinct pleasure of telling Leo stories about his mother when she was his age, the same kind of stories I had loved to hear about my own mother’s precious girlhood.
Although I’m close to my father, I don’t look to him for information. (The first and only time my father was left in charge, he attempted—and failed spectacularly—to teach my brother, who was two, how to change his own diaper.) He doesn’t remember when I took my first step or spoke my first word. And when I asked him if he remembered how old my mother was when she went through menopause, the long hallway I’m about to walk, he looked like he was going to have a coronary.
Lately, I’ve been leaning on Joan, my mother’s best friend, who reminds me so much of my mother with her candidness, her bawdy sense of humor, and her bootstrap sensibility. After receiving Alan’s dry appraisal at the consignment shop, I emailed her and told her I was feeling a little sorry for myself.
“Pour yourself a drink, put on some lipstick, and pull yourself together,” she wrote back, stealing a line from Elizabeth Taylor though she may have well been quoting my mother.
Still, I felt unable to obey their marching orders. For weeks I mooned about, agonizing over whether to buy the jacket yet not having the heart to march back to the shop—in my tired ol’ pajama bottoms—and purchase it. I questioned whether I deserved something so chic when I had only the stroller brigade and early-bird diners at Ruby Tuesday to impress. My glory days were behind me, and there were no guarantees of what lay ahead.
Then my birthday arrived, and my husband, the patient recipient of all that agony, presented me with a large box. I don’t need to tell you what was inside, but I will tell you, when I saw it, I was stunned into action. An hour later, after fixing my hair and applying some red lipstick, I slipped on the Givenchy and insisted we hit the town. It’s exactly what my mother would have done.
SISTER TRAVELERS
MIRIAM DECOSTA-WILLIS
I knew something was wrong when I saw old newspapers stacked in front of her door, unopened presents piled under the dining room table, and the faucet running continuously in the flooded basement. Three months earlier, I had retired, intent upon writing books and hanging out with friends in Washington, where I had lived for a decade. I realized, however, that my mother needed help, so I decided to spend two or three days in Baltimore every week to take her to medical appointments, assist with her finances, and get the house in order.
I look back on that time, between the first signs of her health problem in late 1999 and her death in 2008, with mixed feelings: grief and guilt but also great joy and gratitude. I grieved for the mother—the funny, adventurous, courageous woman—whom I once described in an essay. But reading through my journals, I also remember the guilt that I felt for my impatience, bossiness, and failure to bring her to live with me. Instead, I rationalized that my lifestyle was too hectic for Mother in her declining years, because of my travel abroad and frequent trips to Memphis.
At times, I was exhausted by the caretaking: cooking, cleaning, doing laundry, paying bills, balancing checkbooks, handling unreported tax returns, and renovating the house. Mother once turned to me in anger and exclaimed, “You’re killing me! Things are too rushed.” Sometimes, I had to laugh at the two of us, who were so much alike—independent and stubborn women, determined to have our own way. For example, I threw out trash bags filled with old dishes and rundown shoes but, when I turned my back, Mother brought all her “precious stuff” back into the house. I outfoxed her, though, once I caught on to her game. I took those bags back to Washington and dumped them in the trash can there. Another time, a truck driver came, at my request, to take away old furniture from her damp, moldy basement. Mother didn’t fuss at her caregiver (me!), but she yelled at the truck driver, “You’re taking all my things! I’m going to call the police!”
The fall of 1999 was difficult for both of us, because it was a period of uncertainty and adjustment. Mother became increasingly forgetful and a bit “spaced out.” She had little appetite, lost weight, and stayed in bed a lot—signs of depression. I suspected, too, that she was in the early stages of Alzheimer’s, because she sometimes couldn’t pronounce her words clearly and had a vacant look in her eyes. We were both familiar with the disease, because my stepfather had been diagnosed with AD, and Mother took care of him until she had to place him in a nursing home, where he died in 1998. In late September, my only sibling—and her favorite child—died suddenly in Albuquerque. Those two deaths, so close together, undoubtedly affected Mother’s health. Meanwhile, I had five days to arrange my brother’s cremation, write his obituary, and hold the memorial service, before leaving for Memphis, where my daughter was due to give birth. I was, thus, torn between caring for Mother in Baltimore and my family responsibilities in Memphis.
Eventually, I took Mother to a neurologist, who gave her an MRI, CAT scan, and psychological tests, which indicated that she did, indeed, have Alzheimer’s disease. Later, I made an appointment with a medical social worker, because Mother refused to make long-term plans and I couldn’t continue to commute between Washington, Baltimore, and Memphis. The social worker suggested that she move into a residence for seniors, but Mother replied, “I’m not going to be able to get myself together until February or March.” She added that she was angry about my “interference” in her life, at which point I burst out crying and said, “Mother, I have to get you settled, so that I can get on with my eye surgery.” Ironically, she became my caregiver when I had my first cornea transplant in January 2000. She was only in the early stage of Alzheimer’s, so she was able to drive me to Johns Hopkins Hospital for the surgery and care for me at her home while I was recuperating.
When I was staying with her, Mother was more alert and animated, more compliant and appreciative of the attention. In one of her rare moments of reflection, she turned to me and said, “I hate to put you through all this.” We spent evenings looking at family photos of Datie Mae and Uncle Boy, reading Daddy’s love letters, and examining Grandpapa’s property deeds. Those were moments of joy for both of us, because Mother told riveting stories about her family, as she recalled half-forgotten memories. She would begin
, “Mama was a city girl from Atlanta, who thought Aunt Liza was a witch from Hancock County!” or she would ask, “Did I ever tell you about the letter Mama wrote to Spelman’s president asking if they put saltpeter in the food?” We both laughed out loud, imagining Miss Florence Read’s face when she opened the letter from my grandmother, Lillie Hubert. Mother’s stories have influenced much of my research and writing, especially the book on my father, Sojourn in Kaduna. Growing up, I was a daddy’s girl who declared, unabashedly: “I’m Papa’s baby and Mama’s maybe,” but I became Mama’s baby in the last decade of her life.
Over the next seven years, I moved Mother to senior residences in Baltimore, Silver Springs, and Washington, as she slowly declined, mentally and physically. She lost her vision, hid her Aricept pills, became more forgetful, and, eventually, was confined to a wheelchair. In her residences, we spent time together at musical concerts, chapel services, holiday suppers, visits with family, and parties with friends. She also enjoyed weekends at my Washington condo, Christmas trips to Memphis, and her ninetieth birthday party at the Radisson Hotel at Cross Keys. I learned to talk slower, listen more, stop rushing, follow her lead, and flow with her rhythm. For her part, she never, ever complained, even when we had to wait for hours at Dulles Airport because of ice in Memphis, spend the night in a motel, and get up at 4:00 a.m. to catch the next plane. Finally, I realized that we needed to be closer to family, so I moved back to Memphis in 2007, and placed her in a nursing home.
I wouldn’t take anything for the experience of caring for Mother in her final years, because she, Beautine Hubert DeCosta-Lee—a social worker, college professor, and school administrator—taught me so much about love and life, aging with grace, and dying with dignity. Through moments of joy (sharing stories and laughing together) and moments of sorrow (her husband’s illness and son’s death), we became closer, sister travelers on life’s journey. I have a memory of my mother to inspire and sustain me. Ironically, in the late 1990s, before we knew that she would soon be diagnosed with Alzheimer’s disease, she testified before the Maryland State Legislature, as a member of the League of Women Voters, to request more funding for Alzheimer’s research. In death, she passed the baton to me. So, in her memory, I joined the 2017 Memphis Walk to End Alzheimer’s and raised money to help find a cure for that devastating disease. On that day, I walked in memory of Beautine Hubert DeCosta-Lee. And I walk every day in her memory because she was my mother, my sister, and my friend.
WALKING IN FAITH
An Excerpt from On Pluto: Inside the Mind of Alzheimer’s
COLLEEN (O’BRIEN) EVERETT
“Now faith is confidence in what we hope for and assurance about what we do not see.”
—Hebrews 11:1
Faith is a stretch at times. It is believing in something one cannot see, desperately reaching out at times into a void. Faith is the only thing stronger than fear.
My father has always been a man of faith. Some of my earliest memories of him are watching him kneel by his bedside with eyes closed, clutching a tattered Bible that was peppered with personal notes in his scratchy handwriting. A perfectly imperfect man, by his own admission, he would be so deep in thought and prayer that he would never even hear you enter the room. At the time, I was too young to understand the worries weighing on his heart, but I grew up learning that when life is difficult, or even when it is wonderful, or when one sins, as my father can with the best of them, one needs to close one’s eyes and talk to God.
Everything was less scary to me as a kid, and eventually as an adult, because I saw the power of faith through my father’s eyes: that no matter what life puts in front of you, God is already one step ahead of you. The Lord has a plan.
Well, I’m pissed off today about God’s plan for my dad. Yet, I try in faith to listen.
Looking back, I don’t ever remember my father yelling in torrents. He hardly ever lost his cool. When he coached my youth softball team, he would gently guide me to focus on fly balls instead of picking dandelions in centerfield with my childhood friend Liz Seymour. Or when our team cheered wildly after a member of the opposing team hit a home run—anathema to my sports-minded father—he would just smile. Or when as young kids, my brothers, Brendan, Conor, and I found ourselves on Saturday mornings playing hide and seek beyond stated boundaries by the printing press at the Cape Codder newspaper where Dad was editor and publisher, my father jokingly would get on the public-address system and loudly announce: “Brendan, Colleen, and Conor, to the principal’s office! Brendan, Colleen, and Conor, to the principal’s office!!”
Later, when I began dating, Dad welcomed boyfriends into the house with a hug instead of an intimidating glare. My older brother, Brendan, often had to take on the responsibility of scaring off rogue teen suitors. Dad rarely swore in front of us then, and treated everyone with respect; he saw the good in everyone—no matter their story, their look, or their past. Still does. He has always been one to reach out in gut instinct to help and mentor those in need, usually outside of the view of others.
Today is a different narrative in our journey with Alzheimer’s. Now Dad has violent outbursts and eruptions of profanity. When he gets confused, which is often these days, he lashes out—usually at the people who love him the most. Outings with him can become uncomfortable, painful actually. At times, for example, I want to grab the waitress or cab driver, or whoever he’s yelling at, and let them know it’s not them, it’s not him. It’s Alzheimer’s.
A few years ago, my father was invited to speak in San Francisco. The trip happened to coincide with my spring break as a teacher in Baltimore, so I agreed to go as his caretaker. He doesn’t travel alone. I remember my mother asking if I was sure I could handle it. Living then several hundred miles away from the Cape, I didn’t get to witness the full picture of my father. When he only saw me for a short period of time, he was able to use up all of his energy to be in the present with me. I didn’t always see the darker side of the disease that my mother and brothers did. Until I spent a week as his caregiver, I had no idea how much of my father this disease has consumed.
Going through airport security without a second thought, I took my shoes off, put my bags on the conveyor, and walked through the AIT machine. I then heard someone spewing profanity behind me, and my stomach dropped. My father couldn’t figure out how to take his belt off, and the TSA officer wouldn’t let him through until he did. In that moment, nothing made sense to my father. He knew that he should be able to take his own belt off, yet couldn’t. From thirty feet away, I had to watch the man who raised me to be a kind soul and taught me to field ground balls break down over his belt, as crowds of people stared in judgmental confusion over his confusion. In that moment, we switched roles. I became the parent. I closed my eyes, and asked the Lord for the strength to calm my dad. I made eye contact with him from the other side of the security screening, and coached him through the rest of the security line, like I would with one of my young students. I felt embarrassed and then immediately guilty for feeling that way. I knew that it was Alzheimer’s, not my father. But that’s the thing with Alzheimer’s; it strips the person you love of all elements that make them who they are. There are many things that define my father—he is a devoted husband, a loyal friend, a loving father, an avid sports fan, and a stubborn Irishman. Alzheimer’s does not define my father, but it does slowly strip away all of the things that do define him. All of the things that make him who he is.
My father today has become more childlike; the disease takes you there. And maybe that’s a good thing toward the end of one’s life. We all are so busy being adults that we forget the beauty and innocence of being a child, reinforced in me now as a young mother. Dad, in his disease, has found the balance sought in the Gospel of Matthew 18:2–4, “I tell you the truth. You must change and become like little children (in your hearts). . . . The greatest person in the Kingdom of Heaven is the person that makes himself humble as a child.”
Dad is now a child in so many
ways.
Each Father’s Day, I can’t help but wonder how many more I’m going to have left with my dad. And not just physically, but mentally—where my dad remembers me, and remembers my daughter, Adeline. It’s a terrible thought, but one I can’t seem to get off my mind. Watching him slip away has been one of the most painful things I’ve ever had to experience.
While I can’t help these thoughts from flooding my mind, I also think of the wonderful memories that I do have: baseball games in the front yard; father/daughter trips to Fenway Park; ice cream at the Smuggler; and summer walks on the Brewster flats on the Cape. My father coached my little league softball team; as school committee chairman, gave the commencement speech at my high school graduation and handed me my diploma; surprised me with a yellow lab puppy for my sixteenth birthday; and walked me down the aisle on the most important day of my life. Alzheimer’s may take a lot from my family, but it will never take those memories away from me.
It’s really incredible to watch my father with my infant daughter. It’s a moment I wasn’t sure if I would ever get to have. I’ve read that children can reach those in the throes of Alzheimer’s at a deep emotional level—a level that most adults can’t. That’s the grace of being a child, for Adeline and for my dad. I’ve seen it in the way that Adeline looks at my dad. She looks past his temper and his confusion, and only looks at him with adoration and love. When she smiles, she smiles with her whole face. She can’t help but be all smiles when she’s with my father.
She is in awe of him, as I am, too.
My father today has a short commute to work. The path from our home’s back deck to his writing studio on the Outer Cape is lined with broken clam shells that mark the path like airport runway lights as he comes in for a safe landing. He can’t get lost there.
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