Watching, Waiting, Holding On
A Daughter Watches A Beloved Mother's Descent Into Dementia
Posted December 6, 2018
A woman appears in the doorway to my mother’s room, a tall woman gripping a wooden clipboard.
“Hello Tracey,” I say, voice laced with guilt, a misbehaving child caught by teacher. I step back from my sister with whom I’ve been whisper-hissing, This is bullshit. Tracey fucked us big time.
I glance backwards toward the bed holding my 92-year-old mother, breathe relief to see she still sleeps, oxygen machine humming the same dull rhythm it has sung for years. She’s oblivious to the items scattered across the powder blue carpet—empty boxes, dozens of extra strength trash bags to carry her clothes to the Salvation Army. She won’t need matching slacks and cardigans where she’s going.
Tracey sheathes her body in a polyester pantsuit the shade of a bruise. Her face is stone, revealing no shame for holding a clipboard in the era of iPads. She’s polite but firm. She has a job to do, doesn’t bother with insincere smiles. Hers is a profession of death and other bad news. She knows how to steer a conversation back to issues at hand should a daughter digress into how this all feels, how panicky this makes a daughter. This is her turf.
Yesterday Tracey called Judy, the older sister—the boss sister—stating our mother no longer qualified for Assisted Living and had to be moved to hospice in the Skilled Nursing Unit immediately. A bed had become available and our mother needed to be moved today. We are pissed by the inconvenience, the lack of consideration for our schedules. Mostly we feel undone by a reality we have worked so hard to ignore.
It’s time to go. We steel ourselves, rearranging our faces for the present task, trailing in silence across the grounds as Tracey calls them. Past the dining room where my mother used to eat her meals, past the beauty parlor where she used to get her hair teased and shellacked into a silver dome, past the auditorium where we attended events—Mother’s Day brunches, summer barbecues where the more ambulatory residents line danced to Achy Breaky Heart. We are long past those days, never realizing at the time those were the good ones. We reach the Skilled Nursing/Hospice building and Tracey holds the door for us, momentarily demure. We step past her, into the place that scares us.
Judy and I trade glances, raising eyebrows because this place is airy, bright, and doesn’t smell like piss. Tracey introduces us to Elsa, head of hospice, then spins toward my sister saying she’ll be in touch later concerning details. This means money and paperwork.
Elsa wears rose colored scrubs and her curvy body emanates warmth as she gives us the tour: dining area with too-loud TV, patio for sunning in wheelchairs, sitting area for staring blankly at nothing. Passing patient rooms I sneak peeks at the dying. We listen to Elsa, eyes probing for clues of neglect. We don’t want to miss anything.
Tour completed we return to our mother, who is now awake. She has kicked off her blankets like babies do. Her diaper gapes, allowing peeks of a withered hairless place, the part of her from which I came. I want nothing more than to crawl back inside that womb. My entire history is her. I have not lived one day in this world without her in it. This body holds an accumulation of all my years on this planet. She was there when I couldn’t walk, when I too wore a diaper. If she is dying, part of me is dying. The blue carpet beneath my feet starts to swim and I lean against the bed as the sickness inside me grows. It is that core piece of my identity, Daughter, collapsing inside me.
Our mother has shrunk over the years, leaving a body conjuring images from newspapers documenting starvation, a body seeking to vanish in plain sight. The thighs I clung to as a child shrivel now, barely containing bones pushing against skin covered with plum colored splashes. Fingers that once stroked my hair are now twisted and crooked. Cheeks sunken, eyes squinting and empty, she’s a stick figure like those in the games of hangman she puzzled me with when I was a child, playing with words like astonishment, shadow, doorway. The woman who was my mother has disappeared, piece by piece over the years. The woman who loved music and cooking and laughing is a ghost.
I check to ensure the oxygen tubing rests properly inside her nose, straighten her lopsided pajama top. It takes her more than a few moments to recognize me.
“Hiiii,” she croaks.
Next to her is a tray holding a mound of bread stuffing, whipped potatoes with gravy, limp shredded turkey. While Judy pulls clothes from wire hangers, pushes them inside trash bags, I scoop bites of potatoes onto a spoon. Moving it toward my mother’s mouth, she opens wide, tongue looping to grasp at this nourishment. Somewhere inside me falls an avalanche of grief, but my mother is mercifully unaware.
Finished eating, she gets fussy, fidgety, tries to lie back down but cannot make her body accomplish even this small task. I try to help her adjust but she cries out as if in pain. She doesn’t want my kiss, doesn’t want my touch on her hand. I glance at the TV on the wall. Rachel on Friends flusters, distraught because she can’t get her baby to stop crying. “I can’t even comfort my own baby!” she yells at Phoebe. “I’m a terrible mother!” Her words echo inside my mind. I can’t even comfort my own mother! I’m a terrible daughter!
Finally my mother drifts into fitful sleep, whimpering and grimacing, a reflection not of pain we’ve been assured, but from fragments of thoughts racing through a broken mind. What thoughts? We, her daughters, will never know.
My sister and I get busy, further collapsing a life that has been caving in on itself for years—from home, to independent living apartment, to assisted living, now to a single dresser in a room with a privacy curtain. We save five loose-fitting outfits, one pair of slippers, an assortment of framed photographs. The photo albums we set aside, agreeing to parse through those later. One falls open, allowing me a glimpse of my mother as she used to be—tall, slender, smoking a cigarette in our kitchen. I imagine the presence of my father outside in the garage building model airplanes, inhale the smoky scent of a pork roast browning in the oven, feel the vinyl of a kitchen chair sticking to the back of my bare legs as I watch her, pretending to puff on my own red tipped candy cigarettes. I’m filled with longing to go back in time, to live it all again exactly the same, even the bad parts. Because that is nostalgia. From the distance of time no bad parts exist.
Google “hospice” and you’ll find euphemisms. Life-limiting illness. The final phase of life. You will learn hospice is end-of-life care provided by a team of professionals focused on medical, psychological, and spiritual support, that hospice is appropriate after a doctor has estimated a patient has six months or less left to live.
If you run across a WebMD article entitled What to Expect When a Loved One is Dying, it will tell you, As death approaches, your role is to be present, provide comfort, and reassure your loved one with soothing words. Constantly assure them you’re there. Scroll to the end and you’ll find a link to another article, Check Your Depression Symptoms.
What Google won’t tell you: Hospice means it’s possible to live too long. Hospice means no solutions. Hospice means all pretensions stripped away, like blankets tangled at a mother’s feet. Hospice means your mother now officially lacks what most beings take for granted: a future.
We don’t know how long it will be. No one does. My sister and I trade days for visits and on my days the cords in my neck tense the moment I awaken. On my days I always have a panic attack, the kind where my hands shake so badly I can’t drive and have to take a Lyft.
In the months when she lapsed further into nonsense my mother sometimes asked, in moments of semi-lucidity, “Is there anything of mine that you want?”
When I told her no, there was nothing I needed, she replied, “I don’t want you girls fighting after I’m gone.”
Even in the slide into dementia a mother knows her girls’ decades-long history of sibling fueled conflict.
The worst days now are when her face crumples with anguish as she says, “I wish I knew what happened to your father. I guess people were after him. He had to disappear.”
On these days her eyes open wide, frightened and helpless, “I guess he can’t call from where he is.”
On these days I think to myself, No Mom, I guess he can’t. My father died in 2006. We sat with him in the hospital the night he died.
The worst days are when she adds, “And I don’t know WHAT happened to Karen!”
What’s the right way to respond? Everything I try earns a perplexed stare, creases in her ashen face deepening. The best path, I’ve come to believe, is to gently guide the conversation elsewhere. The dissolution of a mind is a mystery.
On these days emotions refuse to stay safely stowed away. When I exit, the ground refuses to stay still and the day looms before me like an empty curse. I won’t be able to work, to write, to even read. I return home ragged, crawl into bed, assume the fetal position, let the exhaustion of grief overtake me. “I am grieving” is a better story to tell oneself than “I am losing my mind.”
Friends tell me the death of a parent is a life-defining psychological loss. It defies our logical comprehension of the world. It takes a sledgehammer to all we hold as true. Friends tell me to be gentle with myself and in my own dysfunctional way I am, eating nothing but pizza, sloshing down too much wine and indulging my other drug of choice, Netflix. On the days I can’t bear to go see my mother I try to acquit myself, tell myself it doesn’t matter, she won’t remember if I’m there anyway. I tell myself I’m worn out with obligations, that I need to try to have a life, remind myself of all the times my mother admonished me, Don’t over-do. I try to convince myself she would condone my foggy afternoons in bed even though I know this is a lie.
How are you supposed to feel when it’s official that your mother is dying? I think of all the times we have left each other but always returned. I think of how this time will be different.
Months drag on and oh God, I am losing myself.
My mother’s face is no longer steeped in fear. The twin angels of Xanax and BuSpar have seen to that. She’s not in pain. She’s well cared for. There is no bad blood between us, nothing to forgive. I should feel grateful to be spared those barbed complications. Why can’t I feel grateful?
As my mother holds on my sister and I watch and wait. For all our spats over the years, we have somehow learned how to comfort one another. On a Monday evening in my sister’s living room, we sort through jewelry and photo albums. We divide them thoughtfully, generously. There is no fighting, only love.
If she knew, my mother would be happy.