I walk into the last room my mother ever lived in. Cords and outlets decorate the flat gray walls. The sheets are askew and crumpled on the bed and my mother’s feet are curled around them. It’s an image I hold onto, her cute little feet, gnarled from all those pretty shoes in the 1940s, in her pink and green polka dot socks.
On the wall facing her, my brother Steve and I have hung pictures – a collage of her children, grandchildren and great-grandchildren; Mom and Dad in sepia tones; a painting of the house in Dayton, Ohio, where my five older brothers grew up. Her once pretty wardrobe has been reduced to limp, faded blouses and slacks hanging lifeless like rag dolls inside her tiny closet. An empty bedside table with wheels—everything has wheels—adds to the temporary feeling of this room. The elderly residents slumped in wheelchairs are lined up along the hallway, heads resting in their laps, growing ancient. My brother and I call it Zombie Row. I see the Christmas sweater I bought my mom go down the hall on a woman with orange hair.
It’s been weeks since my mom opened her eyes. She’s been steadily declining since Thanksgiving when she stopped eating, and I’ve been fighting her departure. In December doctors put in a feeding tube and not long after that, a seizure shut her down, and closed her eyes.
Five years earlier, when the dementia became apparent, two of my older brothers called from Michigan to say Mom had been wandering the grounds of the latest retirement village, knocking on doors at four in the morning, yelling that the place was burning down. She also had fallen several times and they thought she needed to be in a nursing home.
Out in Los Angeles, Steve and I protested. We agreed she was confused and that she could not live alone, but she wasn’t ready for a nursing home. Not yet. There had to be a better choice. So we told them to send her to us.
Years before, she loved her visits to us in Cali. When she was here, she went where we went. Parties, Steve's comedy gigs, even to see a friend's band at the Roxy on the Sunset Strip. We drove her to the park below the Hollywood sign where she belted out "Hurray for Hollywood," in the way only she could do, and cracked herself up. And thankfully, we captured it all on video. When the camera was on, she was on.
She came to us in November, out of the cold lonely rooms of Michigan and into sunny southern California. For the first few weeks she was confused and spoke her own language—a jumble of consenants and vowels. She thought there were two Steves and would often ask where the other one was. But as she slowly became more acclimated to her new environment, her words began to make sense. We got her settled into a very nice retirement home but just three months in she fell back into confused, erratic behavior and it was clear she needed more care than they could offer. (Through this experience we learned that any move, even a positive one, can set a dementia patient two steps back.) So now we'd have to move her again—another setback—but where? Steve said, "she'll come live with me."
Every day he took her to Balboa Park for walks around the reservoir. Every day he told her to "walk with a purpose, Mom," and to list her children. These were things that strengthened her memory. I stayed with her when he had to go on the road. Our favorite outing was shopping for clothes. I'd carry armfuls of clothes to her dressing room, which we both loved, and it became one of the sweetest memories for me.
Occasionally she'd ask questions like, “Whatever happened to your parents?” Most of the time, she was the mother we knew, but we noticed this: As she became more like her old self, more lucid and in present day, her anxiety increased. So she was either Banana-Helen (as we fondly referred to her) or Helen 2.0, and Helen 2.0 could really break your heart. One night as we were watching TV she looked over and said, “Can you believe this is happening to me?”
And though we shared many remarkable moments, the first year also aroused familiar mother-daughter conflicts. I felt like a square peg in a round hole growing up under her expectations of me. She was critical of my clothes in particular. “Why don’t you wear things like your friend Mary Sue wears? She wears such cute clothes." Or "Do you honestly like what you’re wearing?” Into my adulthood she could still push my buttons. But now? In her dementia? Indeed, she was still able to get a reaction out of me. She was ill and frail, but when she said these things I wanted to smack her. Those feelings shocked me. What kind of person would want to hurt their sick mother? It turns out, a human person would.
Steve and Mom lived on her social security and a monthly check her 91-year-old brother sent. Freshly married and 30 miles away, I tried to give Steve a night off once a week, and on occasion we would hire a caregiver. That did not go well with Mom. She either didn’t like them, couldn't understand their accent, or they ate every last morsel in the house.
One day as she was slowwwwly walking into the den, she looked up and smiled that darling smile and then fell forward over her walker onto her face. She broke her elbow and could no longer use her walker. The wheelchair was too cumbersome for his small space, so now Steve carried her from room to room.
One Saturday afternoon, just as Steve was flying to Florida on business, my mom, in the care of a close friend, had a grand mal seizure. During her recovery, the doctors told us she would have to be admitted to a Skilled Nursing Facility. The dreaded Nursing Home. The place we always knew would be the beginning of the End.
The decision had been made for us. Heartbroken, we moved her into a place near Steve’s house and hoped it would be temporary; that she would recover and come home. I shopped for other, more comfortable homes with better care, but on Medi-cal, choices are few. We wanted to give her a palace, but we didn’t have the money to give her what she deserved.
As we’d suspected, it wasn't long before she began to fade. She spoke less and less until she was just like the others, slumped in her wheelchair on Zombie Row. On my visits I would wheel her out onto the patio for some sun and sing her favorite songs into her ear. No reaction. Her head just hung. I couldn't believe what was happening. It was the strangest feeling. “Mom, can you hear me?” I was desperate. “Mom! I need to know you hear me. It’s me, your daughter. Your only daughter.” I shook her. “Mom, please hear me!” I knew people could hear me and I was embarrassed, but I couldn't stop. She just stared into her hands.
That last year in the nursing home I drove a labyrinth of freeways every Tuesday night, longing to see her while dreading the eternal hallway that smelled like a nightmare. Once I was there I immediately wanted to leave, but at the end of my visit I would linger, wanting just one more kiss, one more smile, one more cuddle.
And now it’s Valentine’s Day and she’s in a deep sleep. I stare at her. My 86-year-old mommie. In two months she will be gone. I kiss her salty face and run my hand through her wavy white hair. I drink in her features—rosebud mouth, dainty nose, milky skin, furrowed brow—even in sleep. Her thirsty lips repeatedly purse and part. I could sit here forever, watching every move, every twitch. I’m a breath away. I can see her eyes blink underneath the eyelids. I lean in, kiss her and put my arms underneath her, wanting her to feel the warmth of my body, wanting her to hear my voice. I’ve learned how to time it so she’ll answer my questions with “uh-huh” or “yeah.” Sometimes she’ll nod. Each sound and gesture is a treasure. I grab them and shove them into my memory.
And then, those eyes that have been shut for weeks, open—just like that—and she’s looking at me. Green eyes full of meaning and looking right at me, seeing me. I lean in closer. She smiles. She knows me! She purses her lips and I kiss her. I lay myself on her chest and breathe the warmth of her. And then she does the most amazing thing—she says my name.
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