When my mother received her Alzheimer’s diagnosis in the spring of 2013, my sisters and I thought only of the potential horrors that lay ahead, and the slow withering away of the person we loved. What we couldn’t have foreseen were the moments of beauty, the moments of grace that might coexist with these horrors, moments that would allow us to glimpse not only the woman we thought we knew but also the woman she had always been. These moments have saved us more times than we can count, and I have to believe that, for our mother, they have done the same.
“Okay, Mom,” I say. “Straight up.” My mother raises her arms above her head with no complaint, as I pull off her blouse so I can bathe and dress her. My face is very close to hers, and she looks at me with complete trust, willing to suffer this indignity from her oldest daughter, a daughter with whom she has been at odds, at least to some degree, for almost fifty years. It is an oddly intimate moment, and an unexpected moment of grace. Strangely enough, for a woman who regularly forgets to bathe or brush her teeth, she doesn’t smell. I’m surprised because, at this stage of the disease, Alzheimer’s usually leaves the body relatively unscathed as it steadily eats away at the brain, until the afflicted are, literally, no longer themselves. But today it’s as if it has also robbed her body of its most basic functions, turning her into the shadow of an actual person.
At first, my mother’s docility, which usually happened when my sisters and I were dressing her, came as a shock, considering the fact that, before Alzheimer’s, she had never displayed a single shred of docility in all the years we’d known her, which is to say, our entire lives. But, while frightening, that docility also proved to be a blessing. Where before everything was a fight, particularly in the first few years following the diagnosis, now it is the lack of push-back that allows us an occasional respite from the battles she fights as she tries to hold on to her independence. When the difficult battles do come, we do whatever we can to try and work our way through them. I struggle not to show my anger and frustration, not always successfully. I remind her of The Lion King, a movie we saw together during a challenging time in my own life, and I tell her how important it is to keep things in perspective, particularly when things seem especially dire.
“It’s the Circle of Life, Mom. It’s my turn to take care of you.”
While that tends to comfort my mother most of the time, I know that I’m also trying to convince myself. The truth is that I’m scared out of my mind. Alzheimer’s often runs in families and I know that someday this might be me.
In Andrew Lees’ book The Silent Plague, he claims that, for many people, “Alzheimer’s is feared more than cancer and sometimes even more than death itself,” describing Alzheimer’s as a type of dementia that is diagnosed when, “the illness has advanced to a level where the patient can no longer plan or handle everyday complex tasks alone.” That, of course, is difficult enough, but it is the loss of memory that truly defines Alzheimer’s.
“Memory,” Lees says, “is the matrix upon which all other human faculties are embedded. If it is eradicated, independence will inevitably be lost and survival will depend on the kindness of others.”
And if those responsible for her care aren’t kind, whether they are immediate family, extended family, or caregivers brought into the home from outside agencies, what then? Regardless of where that lack of kindness comes from: ignorance of the disease itself, a lack of empathy, or an unwillingness (or inability) to deal with the overwhelming sacrifices necessary to provide decent care, none of that matters to the person suffering from the disease. To them it will only cause confusion, anger, and fear, ultimately presenting itself as what it really is: cruelty; cruelty because with an Alzheimer’s patient you are never on a level playing field. They will always be at a disadvantage because of the disease. It’s a bit like bullying a weaker child on the playground, only worse, because a weaker child, in most cases will eventually find the strength to fight back. Not so with Alzheimer’s. In fact, it will only get steadily worse, making the cruelty seem even more pronounced. To witness this happening to someone you love is terrifying.
Richard Taylor, a man who was diagnosed with early onset Alzheimer’s in his late fifties, wrote, in his book, Alzheimer’s from the Inside Out: “I feel loved, ignored, needed and like a dying albatross that is chained around each of the people who cares about me.” My sisters and I live with the fear that our mother has thoughts much like these but is too proud, or too ashamed, to share them.
My mother often sleeps with me when I visit her, 2,500 miles away from where I live. She comes to the various homes I rent—her house so filled with clutter that I no longer feel comfortable there. I watch her as she sleeps and marvel at the intimacy of such a simple thing. In a healthy world you would never be sleeping with a parent. You would be sleeping with a spouse or a lover, or a friend, perhaps, on a weekend trip or an overnight stay in the city. But when sickness comes there are no longer any boundaries. As the time you have left grows shorter, you simply don’t have time for that. There is a sense of freedom that was never possible before, if you choose to embrace it. And it is the moments of grace that come with this freedom that my sisters and I are determined to give to our mother, and are grateful when she, in turn, gives them to us.
My sister and I are sitting with Mom over dinner after spending the afternoon with an old friend. It is our first dinner of the night, the first because my mother is constantly asking for food because she often forgets when she last had a meal. I’m physically and emotionally exhausted after a week of dealing with her illness. The energy required to watch my internal filters is temporarily gone, and when Mom asks us how our day was, I say, “Well, Mom, we smoked a joint and it was fabulous.” My sister’s jaw drops and I shrug, waiting for our mother to respond. Finally, without a trace of irony, she says, “Oh, Honey, isn’t that nice!”
Another moment of grace, and like all the others, we never saw it coming.
As her short-term memory disappears, her long-term memory, for now, remains intact. Her sense of humor is still sharp, and we laugh as long and as hard as we can, for as long as we can. We swear like sailors, and so does she, and we share old secrets that would never have been spoken of before the disease took hold of her. We ask her for details of our childhood that will soon be lost to us. We buy her cheeseburgers, and pour her slugs of brandy when she wants them (after which she immediately falls asleep). We no longer scold her for putting too much sugar in her tea, or for wearing the same shirt three days in a row. We don’t criticize her for what she does, or what she doesn’t do. Why don’t you walk more? Why do you sleep so late? Why don’t your socks match? None of that matters anymore.
Because she can no longer ensure her own safety, that task has fallen to us, for the most part, a difficult proposition considering the fact that we live halfway across the country. Her husband, our stepfather, loves her and does what he can, but he is also getting older and will soon need care himself. To the exclusion of almost everything else—with the exception of keeping ourselves healthy, mentally stable enough to continue to be there for her—my mother’s battle with Alzheimer’s has completely worn away the things that aren’t directly related to her happiness and safety. We no longer have the energy, the inclination, or the luxury, to spend time on anything or anyone who doesn’t help contribute to those two things.
For my sisters and me, other than our relationships and our jobs, each of which has suffered to some degree since all of this began, our lives have now been reduced to three things: our mother, the disease, and each other. Sibling resentments, for now, are a thing of the past. We are together in this fight, and living through it has made our love for each other much stronger (another unexpected blessing). She’s the only mother we have or will ever have. We have an unknown amount of time left with her, and that could be one day, one week, or one year. Our struggles with Alzheimer’s have been brutal and unforgiving. Now, it is the moments of grace, when they come, that sustain us. I hope that, for our mother, the same is true for her.
She asks me for a cup of tea, the tenth time today. All ten cups, each one partially consumed, are scattered all over the house, but still I go to the stove to put water on. I could just microwave one of the cups I’ve already made, but today I slow down and concentrate on the process. I clean her favorite mug and steep the tea until it reaches the right strength. I add ten packets of sugar which, because her brain no longer processes how things taste, is what I know she’ll ask for and I don’t want her to have to do that anymore. I don’t care if she takes one sip, or no sips at all. I place the mug in front of her and she looks up at me and smiles. I turn away, not wanting her to see the tears that come so often now, mostly because there’s no way I can explain them to her. I’m crying over a simple cup of tea and a smile from my mother, and because I’ve been given yet another moment of grace.
Sandy Ebner lives and writes in Northern California. Her work has been published or is forthcoming in Connotation Press: An Online Artifact, Dead Mule School of Southern Literature, The Doctor T.J. Eckleburg Review, the HerStories/ My Other Ex anthology, and other publications. She holds a bachelor’s degree in journalism from California State University, and is an alumna of the Community of Writers at Squaw Valley. She previously served as the creative nonfiction editor at MadHat Lit and MadHat Annual (Mad Hatter’s Review), and is working on her first novel. Follow her new column After Hours here at Change Seven.
READ MORE WORK BY THIS AUTHOR:
- There Once Was a Town
- Why Food Writing Matters: A Profile of John Thorne
- Twice Loved
- Hatred Learned
- A Conversation with Frances Dinkelspiel
- Some Thoughts on AWP
- Distracted by Life
- Brown Bottle by Sheldon Lee Compton
- Gracious Little Bastard: The Story of a Chef
- A Conversation with Meg Tuite
- An Alleyway in Paris
Thank you, Laurel, truly/ xoxo
Thank you for sharing your story, Sandy. I know this path very intimately…take the graces – all of them. Love the photos of your mom, and your honest, elegant language here.Hugs from another Alzheimer’s daughter…