“How many hours per night do you sleep, Claire?”
The Hospice doctor was on question nine of the intake form. His matter-of-fact manner belied the gravity of what we were doing. It wasn’t that he was dismissive or distant. He was simply at ease with the transition from life to death. Me, it felt like I was enrolling my mom in Grim Reaper High.
Mom’s beautiful blue eyes, clear and innocent, focused on the doctor as she thought about his question for a few seconds before responding, “Five.”
“Mom,” I interjected. “Really, you sleep only five hours? What makes you say that?”
Confusion clouded her eyes as she turned to me. “Monday-Tuesday-Wednesday-Thursday-Friday,” she spit out, rote.
“Good, mom!” I responded as I would to a child. Oh, Lord. She was that far gone?
A dozen more questions, and her answers came in waves of clarity and confusion, with confusion clearly winning. It was a heartbreaking meeting. My mom, the woman who saved our family from financial ruin, who went to work in real estate and became the number one salesperson in the San Fernando Valley for twenty-seven consecutive years, was lost in a cotton ball mind, barely able to carry on a conversation.
Earlier that day, I’d met with the doctor and his nurse downstairs in the dining room before we went up to my mom’s apartment to do the intake assessment. The doctor sported a graying goatee, red-rimmed eyes behind rimless glasses and a ready smile that exposed unusually long, coffee-soaked teeth. He partnered well with his nurse, deferring to her obvious experience in the area of the daily care of the dying.
After signing the legal paperwork and describing my mom’s daily routine, we gathered up our papers to head upstairs. “One last thing,” I said. “We can’t tell my mom she’s going into Hospice. She’s scared to death of death. And, believe it or not, of Hospice care too. Is that okay?”
“Sure. It’s not unusual.”
Five years earlier, one of the women who lived at her retirement home, Helen, was diagnosed with cancer. She went quickly, but in the weeks before she passed, she was put in Hospice care. It was all the talk down in the dining room. A select few of Helen’s friends were allowed to visit briefly, by invitation. My mom’s turn came within the week. I got a call right after her visit.
“Lesa, sweetheart, it’s your mother. Oh my God, she looked awful!”
“Helen? Well duh, Mom, she’s dying! She’s probably in some pain, and I doubt she’s had her hair done or put on any lipstick, so give her a break.”
“No. It was worse than that. Promise me. Please. Don’t ever put me in Hostage Care.”
That is a “Claire’ism” as they’ve come to be known. Mixups born of literalism, gullibility and innocence. Add “Claire’isms” to Alzlheimer’s, and you get something like a charmingly drunk ingénue, but more tragic.
The assessment interview continued as the nurse sat on the ottoman at my mom’s feet to take her vitals. Mom responded obediently to instructions. With each deep breath in, I could hear the wheeze born of fifty years of my dad’s three-pack-a-day habit. Exhaling, she looked to the nurse for approval.
Mom smiled demurely, chin tilted downward, eyes looking up to connect with the nurse’s. She proffered her frail arm. I heard the crackle of Velcro and the pump, pump, pump, until, as she always did, said “Ow!” followed quickly by a smile in apology. Her crooked index finger took on the clamp that would measure her oxygen absorption.
Besides her mind, my mother was in good shape for ninety-eight. Lithe as a fifty year old, I’d often find her butt up on the floor looking under the bed for her cat or bent forward picking up pieces of paper she dropped. But the symptoms of Alzheimer’s increased daily.
“Mom, cats don’t eat raisins. Or, what’s this? Brown sugar? Mom, I think Haagen would prefer to eat what’s in these cans here.” I’d pulled one out from the lower cabinet.
“Oh, really, honey?”
“Let’s stack them up here on the counter, okay? Will that help you remember what he likes?”
She smiled, contrite. I could see the cogs in her brain trying to move, trying to mesh, struggling to make sense. Mostly, she just wanted me to be pleased. But a change had started to come on. Sweet and loving as ever to me, and her two other daughters, she began to lash out at her friends downstairs in the dining room.
“Lesa, this is Susan from La Vida. Your mom is becoming very disruptive.”
“My mom is? How?”
“Well she just got very combative with one of the residents and we had to escort her into my office.”
Lord. Like grammar school. She was in the principal’s office? “Is she okay? What did she do?”
“She threw food at one of the residents. Lesa. I’m afraid we’re going to have to discuss finding a new place for your mother.”
I was stunned. I never thought we’d have to move her again, and really didn’t want to. She’d be even more confused by a new place to navigate, new routines, new people. Couldn’t she live out her days here, where she was comfortable? But the slow slide into Alzheimer’s had dramatically picked up its pace in the past two weeks.
The next week she hit someone. And came down for breakfast without her pants on. And sat on her balcony completely naked, sipping her tea. I’d report these events to my sisters and we’d laugh. Who wouldn’t? The images are hysterical! But then we’d cry, knowing how scared she must be as her world became a maze she could no longer navigate. And we’d cry because we were losing her more and more every day.
We had to face it. She needed more care. So the three of us, sisters who didn’t all get along, pulled it together for our mom.
Mary, my older sister, came down from Santa Barbara to accompany me on tours of memory care places. We had three on our list.
“This place is like being in the Cuckoo’s Nest,” whispered Mary as we toured the first location, residents screaming, daughters trying to console. Apparently sons didn’t get this duty.
“With all the warmth of a science lab,” I added.
The second place was about the same, just more expensive. The staff at both were obsequiously kind to us but enforced a list of rules on the residents with smiles as warm as steel. Not acceptable.
The final location, the one we didn’t think we’d like, turned out to be welcoming and wonderful. It was an actual house in a neighborhood, and one of the four other residents was someone my mom knew from La Vida, Ardis, a lovely soft-spoken woman who had been a frequent tablemate of my mom’s in the dining room.
Outside the kitchen was a grassy back yard, bird feeders and groupings of chairs, benches and tables, just like our yard when we were growing up. “Mary look! Remind you of anything?”
We gravitated there to a bench. Exhausted by our day, we sat quietly together. We watched and listened to the life of this place. The TV was on in the living room. Ardis and another resident were at the kitchen table coloring. The Aide was bustling about the kitchen making peanut butter and honey sandwich fingers and apple slices for their snack. It felt like home. And they offered 24/7 care.
“I think we found mom’s new home,” I said.
Mary nodded. We gave each other a lazy high-five, a little teary with relief.
The Master bedroom was available, a space they usually rented to two residents. No way was my mom sharing a room at this stage in her life. Death was next and that was not a pay for view event. Screw the cost. She worked hard and we were taking the whole room for her.
Mary and my younger sister, Toni who lived in Sherman Oaks, came down in shifts to help sift through mom’s piles of papers, books, clothes and furniture. The plan was to set up her new place as close as we possibly could to her current one. Over ten days, we got rid of stacks of newspapers, dozens of empty yogurt containers, cotton from inside vitamin bottles, Daily Activity sheets from the seven years she’d been at La Vida, empty caper bottles, expired medications, cancelled checks, dried out makeup. Toni boxed up family pictures, letters from our dad, her sisters and mom, real estate memorabilia like award plaques, thank you notes, business cards, signed photos from movie star clients. We sorted, we cried, we boxed, we read, we cried.
On the day of the move, Mary took mom to get her hair and nails done while I supervised the movers. By late afternoon, Mary brought our mom to her new home.
“We’re home!” Mary cried out as they walked through the front door.
“Hi Mom! Welcome home!” I called from the hallway.
We were speaking all bright and cheery, like when you walk a reluctant five-year-old into kindergarten for the first day, trying to set a tone.
Mom frowned as we led her into her new room and Mary and I nervously awaited her reaction. She bee-lined it for her bed, sat, then looked up at us.
“What do you think?” I asked.
Mary and I looked at each other. Mom didn’t know she was somewhere new, and we sure as hell weren’t going to mention it.
“About your hair! And your nails. Do you like how they look?”
If there was any doubt that her days left with us were few, her lack of response to brand new surroundings drilled it home. Those two words, if you can call them words, “uh huh,” were some of the last I heard my mom speak. We’d moved her in the nick of time.
She was fully enrolled in Grim Reaper High, but my sisters and I soon came to know it by another name. These people were angels, and cared for her every need with patience, proficiency and, seriously, with love, and they barely knew her. She lived six more weeks, shuffling now, not walking. Soon, she no longer spoke at all, just sat and watched the others. She had colored pencils and a large sheet of paper that kept her busy, but within mere weeks, she only looked at it, no longer drawing on it. Her appetite waned.
My sisters and I knew it was time for her to go, and we were ready for her to go. In concept, that is.
Even I, the daughter who’d been caring for her for the past seven years, who loved her deeply, but who’d endured ten, twenty, then thirty increasingly confused and frantic phone calls each day from her; the daughter who took her to all her many doctors appointments, had her for dinner every Tuesday, who took her to get her hair done, her nails done and bought her groceries; the daughter who managed her Trust, her taxes, her bills, and her dwindling bank accounts; and the daughter who had guiltily wished at times that she’d just die and leave her in peace … I was struggling with the finality of losing her.
On Saturday, the Hospice nurse told us it was time to keep her in bed. With great compassion but ever so pragmatically, she told us our mom had one week. She no longer ate or drank anything. Not even water. Her granddaughters and grandson arrived. We spoke to her, sharing our gratitude and love. We lay next to her, held her hand, hugged her, listened to her breathe. She lay, eyes slightly open, seeing nothing. Or seeing everything. Who knows? She held on. As we waited, we alternated between tears and laughter as old memories came to us.
“Remember the time Mom slipped and fell in the entry pond at that big home she had for sale, but she carried on with the Open House wearing the Hungarian housekeeper’s clothes?” Toni went on, “And to top it off, she’d put on a kerchief to cover her wet hair … tied under her chin! She didn’t say one thing about her get-up as people came through to view the property. But oh my God I saw their looks: THIS is THE Claire Heebner?!”
I chimed in, “Or that time in Cape May when Mom put rubber flip flops on me in the middle of the night? I was sleeping on the summer porch and she thought the rubber would protect me from the thunderstorm!”
“Don’t forget the first ‘Claire’ism’—when that man was telling mom and dad that he had been in a plane crash and Mom honest-to-God asked him if there were any survivors?”
We’d laugh, then lapse into silence until the next memory came. Or check our phones, walk out into the yard, ask about what we should do for dinner.
For days we were stuck between sad and impatient, worried and bored as we waited for the inevitable.
Four days before she passed, a 5-foot garden snake tried to slither across my driveway to our neighbors’ yard. This was about as common as, well, as watching your mother trying to pass to the other side. My husband shooed it back up our bank to the wild area behind our house. We marveled at this odd visitation, adopting the mantra “Shoo, Mom, Shoo! Shoo, Mom, Shoo!” in an effort to help herto the other side.
But there was no change in her. The Hospice nurse told us mom was dying perfectly and I thought “Of course, you are Mom.” She always followed the rules.
Three days before she died, everyone left. They’d said their goodbyes and had to get back to work or school. I was on my own. I visited two, three, four times a day, but she was completely non-responsive. Ray LaMontagne and Hozier’s mournful dirges were my soundtrack. I attended work meetings but was barely present. I was enveloped in a haze of emotion and tension. While at her side, I waited, prayed, listened to the rhythm of the oxygen machine. I smelled her stale breath as I leaned in to touch her still-warm skin, hold her hands, kiss her impossibly soft cheek. What was she experiencing? Her beautiful eyes were focused on that other place, seemingly daring death to take her.
While at home or in meetings, I’d close my eyes for a moment to sense if she was still living, still breathing. I couldn’t tell for sure, but felt she was near me, already a ghost at my side. Back I’d go to see her and sit by her bedside in the chair I’d pulled up close, an old dining room chair, hoping to be present for the moment she decided to pass. At this point, I knew she was waiting for something. There was no change, and so home I went, her shadow presence firmly by my side.
At six o’clock the next morning, Friday, I got the call. On the seventh day, exactly according to the rules, she slipped away when no one was watching. Of course she did. She always followed the rules.
April 30th, 2018