you won't be alone

I take Mom to see her neurologist, Dr. Song, an event which requires arranging permissions, transportation, alternative lunch plans. We feel like we're playing hooky from school or, worse yet, escaping from jail. It's a blue day in Seattle, so all we have to concern ourselves with is the cold--no rain in sight. It's suppose to stay this way well into next week.

Dr Song's late today, but I don't suppose this matters--Mom's just glad to be "out." While killing time in the waiting room, Lorna catches me up about the night before, Mom's sojourn to my niece's birthday party. The party--mid-afternoon lunch at the Nordstrom Cafe--went well enough, that is until Mom got back into the van with Larry to return to the Mirabella. Mom recognized the streets Larry's driving on--NE 8th running past the Bellevue Mall, which then lead to 92nd which then lead to 11th Street and Mom's home on Clyde Hill. When Larry turned right instead of left onto NE8th, to head towards I-405 and SR520 and eventually the Mirabella, Mom began to scream, to cry.

"NO," she yells at the top of her lungs.

"WRONG...WRONG...WRONG... way."

Larry, from his driver's seat, is trying to assure Mom, whose in the back of the van, strapped in, wheelchair and all--"We're going back to your room at the Mirabella, Dorin. Not to worry."

"NO...NO...NO" Mom repeats, not to be placated. Her arms beat the air, vigorously, Lorna reports, like she'd take on anyone who stood in her way.

I can't imagine how this must have felt for Mom--to be so close to where she lived, to recognize the neighborhood, the street, and yet to be powerless to effect her desire, to be back once again in her home without need for medical oversight or twenty-four hour care.

Later, after Mom and Lorna have gone to bed, Mom wakes up screaming in the night--"TIME TO GO," she tells Lorna sternly. "Time to meet the doctor. Marguerite is waiting."

"No, my dear," Lorna reassures Mom, "it's 9:30 at night. Your daughter (sister) is at home. No need to go anywhere. Not until tomorrow morning. Go to sleep."

Mom's not convinced. On night's like this, Mom joins the ranks of "the screamers" at Mirabella. There's the man next door, for example, who screams "Help" in the middle of the night, almost every night. Sometimes he wanders the halls. "Help...help...help" can be heard for hours. Not even the fireproof doors of Mom's room can avert a listening ear. And then there's the "hall people," lonely souls who mutter and wander, during daytime hours, the wide corridors of the Mirabella, their wheelchairs clocking miles, despite never leaving the second floor. It's not easy to be here, not easy to visit here.

Once escorted into Dr. Song's examination room, we wait for the verdict. Mom's recent decline over the last month suggests the existence of another small bleed in her brain, something that could have damaged her nerves once again. I'm hoping this is so because, if it's a bleed, then there's a chance for a partial recovery of her lost speech and cognition. Something to work for.

"The last CT scan we have was done in June 08," Dr. Song begins.

"But then there's the three scans down at Overlake," I interrupt, "after she had her stroke in late August." With this revelation, I can't tell if this is something he remembered or not--I'm hoping he just forgot to mention it.

"The blood is gone," he resumes. Fully absorbed."

"How can you tell," I ask him?

"Because a cavity is left, from where the bleed occurred. This fills with spinal fluid, once the blood has retreated. It stays there, permanently."

"So you can tell," I ask him, "when there's been a bleed, even if the blood has been absorbed."

"Yes," he answers.

"So has there been a bleed....since the August 30th stroke. Can you tell?"

Dr. Song looks at his notes, and then up at me--"No," he says. "No other bleeds."

I want to ask--"So how do you explain this, this recent decline in her functioning?" How would he explain the fact that she spends much of her time mumbling pieces of words that make no sense--it's like someone has scrambled the vowels and consonants and Mom doesn't have the cognition to unscramble them. How would he explain the fact that for weeks now it's been impossible for Mom to spit out her toothbrushing water. Mom cries, screams even when Lorna tries to coax her to spit. Often times she swallows, eventually, unable to expel the residue. But I don't ask. Mom's in the room. And besides, I know the answer. It's the Alzheimer's. We've eliminated other possibilities--UTI, dehydration, stroke.

For a moment, I'm reminded of other doctor appointments I've attended with Mom, times when I've asked just such a question. For months Mom and I sought answers to why her right foot was less than perfectly functioning, why her right hand could no longer hold a pen, why her legs would suddenly collapse, without notice, leaving Mom crumpled helpless on the floor or street corner. All this was long before her first stroke in October 2008. The succession of doctors we've seen--Dr.Rice, Dr. Addison, Dr. Song...and then another doctor, a bone doctor, Mom insisted. There weren't any answers, or at least no answers Mom wanted to hear. I mean, who wants to be told there's no medical remedy for what ails you? The "A" word--Alzheimer's--is something nobody could say out loud, not in front of Mom. So her doctors skated around this, suggesting other tests, other specialists, when really the answer was just this: Mom was getting old, and not in a graceful manner.

There's Alzheimer's in my family--Marguerite, Mom's sister, died from complications due to Alzheimer's. This is not something Mom can talk about. I was relieved when I learned that heredity only increases my chances of getting Alzheimer's by 5%: not a determining factor, in comparison to other environmental issues.

Driving back from one of these journeys to the doctor, I remember pulling into Mom's driveway in Medina because as I turned off the key to the ignition I heard Mom weeping. Mom never cried.

"I don't want," she sobs, "I don't want to die." Her chest and shoulders are heaving--a seismic upheaval--and mucous is running freely from her nose. Mom's body is flooded in grief.

At first I was startled. Mom never talked about dying. Like sex, contraception, pain at childbirth, nothing could be said. But when I finally realized what she'd done--that she'd broken her own rules--there was no question about what I would say in reply. I reached across the console and grabbed hold of her shoulders and back. I held on tight, almost too tight, to make sure she'd hear what I was going to say. I could feel her heart, a drum rattle of fear, incomprehension.

"Mom," I said as I began to sob with tears I didn't know I had, "I don't want you to die either."

She couldn't look at me, as we're hugging, but I could tell she was listening because her tears had stalled, opened up space for our words. As I held her, I wished we could always be this way--two bodies connecting rather than pulling each other apart. I wanted my mother like this--vulnerable, transparent. Why had it been otherwise? When I was young, and she'd rock me on her lap, easing some childhood wrong, there was nothing there between us--just the cotton fiber of my shirt, the tweed of her sweater. My tears would spread wide then, deep, like water pooling a levy, finding it's stasis, it's port of call. Mom's arms were the dike, the dam keeping me afloat.

"But I'll be here with you," I said to her, my lips pressed flat against the nylon sleeve of her jacket. "I promise, Mom."

Mom said nothing. In the silence it came to me what she needed to hear, what she feared the most--"You won't be alone, Mom. You won't."

We sat like this in my car for the longest time. Neither of us moving, neither of us saying a thing. I tried to visualize my world without Mom. I couldn't. She was the call of last resort for me--the one body I could count on, despite all the ways we'd lost each other along the way. There wasn't another safe harbor for me.

Mom's talk about death was almost two years ago, I realize. It's been two years of doctors, hospitals, medications and worry. I wonder if she sees these years in this way? I wonder if she even remembers our talk? And yet despite all this effort, this acquiescence to the wisdom of science, Mom is no better off now then she was then; instead she's much worse as the disease has taken over. There's nothing I can do. The most we've gained is a list of medications Mom takes twice a day, prescriptions to make her confusion, mood swings and anxiety manageable.

So sitting here with Dr. Song, Mom and Lorna, I realize there's probably no more need to check in with his office periodically. He says something to this effect himself--"No need to come back in for a while," he says. I don't ask him why.

It's not until much later in the afternoon that I understand Mom's reaction to the meeting. When I come to see her after teaching class, the first thing she says to me, even before I've taken off my coat, is--"When do I leave it?" Mom's waited all afternoon to say this.

"Leave what Mom?"

"You know...leave...this...this...this thing."

When I don't immediately catch on, she repeats herself, simultaneously pounding on the arms of her wheelchair--"Leave IT, Leave IT, LEAVE IT."

Recognition comes slowly--"You mean the chair, Mom?"

"Yes," she says, "the thing."

It occurs to me then that Mom and I had different expectations for our meeting with Dr Song. While I was hoping for a brain bleed, she was hoping for release from her wheelchair prison. I had no idea she still held on to this hope. Incredible really, considering the weeks Beverly worked with her in physical therapy, trying to get her to stand up, much less walk. It just never happened--the standing. Mom will never use her legs again.

"Mom," I say to her, squeezing her left knee, "you have more work to do. Those legs aren't ready."

She seems to accept my answer, but there's no way to know. Mom walks a fine line between reality and fantasy. I wonder if maybe the fantasy is needed at times--a way to help her face what she's been afraid of all her life: leaving. Everybody has left her--Deda, Berntina, Sena, Marguerite and her husband Court, Grandpa Gus and Mona (Dad's parents), her cousin Don, her husband, her best friend Dale from college, her son Peter.

Now she's doing the leaving, the dying. But she won't be alone. The rest of us will be left behind.

Deeply, a mother's daughter
--this is a lifewithmom--