A Memoir by Karen Edwards
Seconds into our Skype call, my mother is crying. My sister and I feel helpless. The bulkiness of her wheelchair makes her petite frame appear even smaller. Mom says she wants to tell us something, but we are not “letting her get a word in edgewise.” Frustrated, she bats her hand at the video screen to shoo us away as if we were a relentless fly. We pause to let her speak, but it’s too late. She’s forgotten what she wanted to say.
She runs her hand through her outgrown haircut, revealing the chipped coral nail polish on her untrimmed fingernails. It’s been over three months since we brought her to the salon. When she’s all put together: hair, makeup, and a nice outfit, her self-confidence can be as complementary as her ash blonde highlights and she’ll look ten years younger. But those were her good days.
She slides her hand down the back of her neck, glides it forward along her jawline and then rests her chin in her hand. Her posture reminds me of Rodin’s sculpture, The Thinker.
“I can’t do this anymore. I want to go to bed,” Mom said.
The bed is only inches away, but for her, it might as well be as far and as daunting as Mount Everest because she can’t make the transition on her own. A few months ago, during our outings, she was using a walker. We would go to Starbucks or have lunch at Jumbo Palace. We’d chat about the kids over bowls of fried rice and her favorite: shrimp and lobster sauce. I’d fill in the gaps when in mid-sentence she’d lose her train of thought, or she couldn’t recall someone’s name.
She directs her pleas to my sister Diane, (a nurse) to come help her into bed.
“I wish I could Ma. But I’m not in the room with you, I’m only a head on the screen,” Diane said.
It’s Wednesday, which means, Mom’s regular aide, Meghan has the day off. The aide that initiated todays call, did not stay in the room, so Mom is alone. We tell Mom to be patient, that we’ll get help. My sister scrolls through her cell phone contact list for the third-floor long-term care nurses’ station. It’s just after 3:00 p.m., and the shifts are changing, so no one answers. She leaves a message requesting assistance in room 318.
Looking back now, I wonder if it would have been quicker if we directed Mom to press the bedside call button for the nurse. But who am I kidding? Mom’s skill set to follow detailed directions slipped away a long time ago, along with her ability to answer the phone or use the TV remote.
Over the last year, instead of asking for a tissue, Mom would simply just announce that she needed a tissue. Mom explained to us once that it felt like her nose was constantly dripping, so my sister and I quickly learned to keep a box of tissues handy for her during our visits and outings. Mom would collect wads of tissues or napkins and tuck them into her sleeves, pockets, waistband, and bra. She suffers from short-term memory loss, (the after effect of her stroke six years ago) so she inevitably forgets where she stashed them, and that she just wiped her nose moments ago. So, the cycle of demand and supply of tissues and wiping her nose will run on a continuous loop throughout the day. Prompting her to occasionally say, “if your nose runs and your feet smell, you were born upside down.”
Earlier this year, during a family celebration at a restaurant, after seating my Mom at the table next to my brother, I placed a box of tissues right next to his pint of beer. He looked at me with a puzzled look and asked, “What’s up with the tissues?” I simply grinned and told him he was about to find out.
Nowadays, during these video calls, whenever I witness Mom grabbing whatever is closest to her to wipe her nose: the end of her blouse, a towel, or her bedsheet, I find myself missing those crazy Kleenex days.
Mom’s advancing COPD and dementia limit her independent actions and mobility. She still has most of her long-term memory, and thank God, she still recognizes us. She can often connect and reminisce about the days when we were younger growing up on Staten Island, or the years that she lived in Florida.
Witnessing my Mom’s emotional breakdown, leaves me stymied for words. I press “record video” on my cell phone. I feel guilty recording this vulnerable moment, but I want to document our time together, because I never know if this call or tomorrow’s call could be our last.
All I want to do is put my arm around her and “make it all better,” like she did for me when I was a child crying over a scraped knee. I want to tell her that “everything will be O.K.” just as she assured me when I turned to her with my first broken heart.
My sister cues up a song, “Raindrops Keep Falling on My Head”, and asks Mom if she can hear the music. Over the last few weeks, we discovered if we play music for her, it has a positive effect on her mood. She’ll sing along to Patsy Cline; we’ll do arm dances and sway back and forth to the rhythm of a golden oldie. However, today, I don’t think Elvis himself, back from the grave singing “Love Me Tender”, could change her mood. She bats her hand towards the camera again, and my sister stops the music.
I finally think of something to contribute and I ask Mom if she wants to say a prayer together. I suggest Hail Mary. She complains she can’t do the simplest things. I explain to her that she can take her mind wherever she wants to go.
“Oh, yeah, great. Wonderful. Tell me how it works out.”
I’m familiar with her sarcastic tone. Translation: She thinks I’m full of shit. But I attempt to draw her into a visualization exercise anyway.
“Think about the days when you used to ride the horses at Barbara Barry’s farm. Riding through the grass and the wooded lots.” I’m hopeful the image of her much younger and active years will bring her around.
She doesn’t respond. Following my failed attempt, my sister decides to take a shot at it.
“How about Still Water, Ma? Let’s go to Still Water,” Diane said. “We’re in the cabin, playing music, we hear cousin Patty laughing so loud, it makes everybody else laugh.”
Mom aggressively waves her hand back and forth in front of the camera, cutting my sister off in in the middle of an early 70’s family vacation memory.
“Listen to me please! Can’t I get in the bed?”
My sister and I take turns explaining why we can’t help her ourselves, why she can’t risk a fall and therefore needs to wait for the nurse to assist her into bed. But it’s not the answer she wants to hear and like a toddler that’s not getting their way, she lashes out at the camera again. This time, my sister can’t help it, and she bursts out laughing. I comment how we’re happy we’re on the other side of the camera, otherwise we’d both be getting smacked upside the head.
“I should have had this camera when I was a teenager, then you couldn’t hit me,” Diane said.
We share a sisterly chuckle, but Mom doesn’t see the humor. Which is sad, because no matter what challenges our family faced, somehow, we always managed to hold onto our sense of humor. Even in the darkest of situations you must allow the light to filter through the emotional cracks.
Her eyes are deep and dark like the creases between her brows. Her mind is fixed on trying to solve an unsolvable puzzle.
“I wish you could help me get into this bed.”, Mom said.
Finally, an aide enters her room and tells us the nurse is on her way. Mom’s face softens and after a moment, she apologizes. We tell her it’s O.K. We explain how it is frustrating for us too, because we’re not able to be there in person to tend to her needs, to put her in bed, to brush her hair. We tell each other we’ll talk again tomorrow; we say our goodbye’s and our I love you’s.
Seconds before the aide disconnects Mom’s Skype link, my sister and I thank the aide for his service and assistance.
My sister and I stay online for a few minutes, sharing our thoughts, comments about the day, the call and our sleepless worry-filled nights. For years, we’ve been a team, by each other’s side coordinating Mom’s health crisis through each ER visit, rehab, doctor appointment, move into assisted living and transition into long term care. We discuss the progressive decline of Mom’s physical health, her anxiety issues, complaints about her stomach “turning inside out,” and options for medication and non-invasive treatments.
We acknowledge Mom’s best days are well behind her and we empathize for the limitations and challenges she lives with. We hold onto the hope that tomorrow’s call will be better, that Mom will make eye contact with us, sing along to a favorite song or ask us her intro three-part question: Whatcha doin’? Where you goin’? and How you getting’ there?
So, until the time comes that we’re allowed to visit in person again, we do what so many other families are doing during shelter in place orders – we send care packages, use technology to stay connected, place our trust in our faith and express our love for one another every chance we get.
Karen Edwards –a native New Yorker, left her corporate job several years ago and rejoices everyday she is not confined to a cubicle. She is working on a book about the challenges of living in a marriage of illusion during the 1980’s AIDS crisis that claimed the life of her first husband. An amateur photographer and lifelong runner, she lives in a river town in New Jersey along with her husband, two teenage boys, two guinea pigs and a cat named Murphy.