Monday, February 20, 2012

My Fair Lady

I promised you a blog post.

Would it be okay if I took a nap instead? Or laid my head in your lap and cried?

I don't want to relive Friday. My heart is broken all over again.

I don't want to describe the pain of watching Mom fail to answer every single question asked of her (What day is it? What city are we in? Can you touch my finger then touch your nose?).

And I don't want to admit how high my hopes had risen.

On the drive to Seattle with Mom and Dad, we laughed a lot. Dad and I told stories in our usual, dramatic, hilarious way, the stars of our own show. Mom laughed at all our punch lines.

Next to me in the back seat (in a file folder labeled "Vicki @ UW Hosp"), I found the description of normal pressure hydrocephalis the nursing home staff had given Dad. The nurses wondered if Mom had been misdiagnosed, and her appointment was to ask that question. I read the whole article.

The symptoms matched Mom's. This sentence made my heart skip a beat: Memory problems are usually a component of the overall problem and have been predominant in some cases, which can lead to the misdiagnosis of Alzheimer's disease. How horrible if something could have been done five years ago, and we missed it. Patients with dementia that are confined to a nursing home and may have undiagnosed NPH, can possibly become independent again once treated. How indescribably hopeful if a treatment was possible we hadn't yet considered.

I felt eager. I wanted the doctor to meet my sweet mom and see first hand the travesty of everything she's lost. I was excited to demonstrate, through sheer love and devotion, what I KNOW lies trapped, imprisoned, unreachable among the tangled branches in her brain. I couldn't wait to brag about her art, her literature, her writing, her teaching.

But I never got a chance. The doctor in residence at the University of Washington Neurology Clinic didn't ask me.

He asked Mom to name a drawing of a lion. She reached out and slowly pinched his hand instead. He asked her to draw a line connecting letters and numbers in succession. She couldn't grasp the pen between her finger and thumb. He asked her to hold both arms outstretched, palms up. Her arms wobbled and her fingers curled as if she was attempting a scale on the viola.

Dad and I watched helplessly. We smiled as encouragingly as we could when she looked to us for help, asking us with her eyes to finish the sentences for her like we do in conversation. Her neck flushed in that familiar way. She knew all eyes were on her. She knew she was giving wrong answers. She knew the doctor was humoring her when he said, "That's OK" and moved on.

After an hour of unanswerable questions and impossible physical feats (Pat this beat on your knee. Only use your right hand) the doctor in residence left the room to discuss Mom with his senior doctor. They both came back into the room 30 minutes later. The senior doctor greeted her with a soft voice.

"Hello Ms. Johnson."

Mom didn't respond until she looked up at his face and saw he was waiting for an answer. "Hi."

"How are you feeling today?"

"Good." She shrugged, dismissively. She seemed to know the answer was more involved than that, but the words didn't come. She shifted nervously in her seat.

He asked her similar questions and she failed them all over again. He asked her to stand and walk across the room. She stood unsteadily, took one step, and tried to sit down where there was no chair. The doctor said, "Don't sit down yet, walk to that corner." Her shoulders stooped, and she took small uncertain steps. With the doctor's hand on her arm guiding her, she turned around and walked the few steps back. He held her hands and helped her lower herself back into the chair.

He gently asked Dad and I what questions we had. Again, his calm voice was so reassuring and kind it felt almost condescending. Dad asked if there was any chance Mom was misdiagnosed.

"What other diseases are you concerned about?"

We showed him the article from the nursing home.

He gave it a glance.

"When she was diagnosed," he asked, "did the doctor tell you what the progression of Alzheimer's disease might look like?"

Dad answered yes.

I shook my head no.

He confirmed that while Mom's symptoms had similarities with other diseases (other forms of dementia, or Parkinson's), Alzheimer's was an accurate diagnosis. Because the memory loss was so noticeable as early as five years ago, he ruled out normal pressure hydrocephalis. He said if all the symptoms had started at the same time (tremors, gait disturbance, memory loss) then he might consider it. But he made it clear that all Mom's symptoms were classic signs of Alzheimer's. I realized that his calm voice had probably delivered bad news many times before.

My heart sank. The room suddenly felt eerie.

I asked, "Based on her decline in the last five years, is there any way to predict what the next five years might look like?"

The doctor said, "The average life span after diagnosis of Alzheimer's is five to ten years."

I couldn't hold back the tears.

It wasn't surprising, this predicted time line from the doctor, but it was still shocking to hear it verbalized for the first time. The words hung in the room like fly paper. I couldn't ignore them, but still wanted desperately to avoid the reality. I wanted out of that room.

The appointment wound to a close, and as it did, my grief smoldered. I felt anger moving in. Not like a thunder-and-lightening storm front, more like low-lying clouds of irritation. Everything was suddenly on my nerves. The hospital gown and fumbling arms-back-into-sleeves bugged me. The final potty stop bugged me. Mom's snail pace back to the car bugged me. Dad's attempt to distract me and carry on a conversation like we had the first half of the day bugged me. Maneuvering through an unfamiliar building bugged me.

By the time we got back to the parking garage, I was fighting back more tears and breathing hard, trying to talk myself out of a blow up or a melt down. I told myself to let the irritation go. I told myself to be present with Mom, in this moment.

I turned and looked at her, each of her arms gripping Dad's and mine, shuffling between us with slow, short, flatfooted steps. Her rubber soled shoes stomped on the pavement with the force of each footfall.

Her lips were pursed. "Are you whistling?" I asked, surprised.

"Yep!" She said, and hummed a happy, triumphal tune ("Get Me to the Church on Time" from My Fair Lady).

"Are you marching?" I asked?

"Yep!" she laughed.

I laughed too. So did Dad. I realized her funny steps were actually keeping time to the tune in her head.

I kissed her hand, still tightly holding mine.


  1. This is a terrible post that was elegantly written. You're a good writer, Emily, and I am so sorry. You're doing a good job.

  2. I love you. That's all I know to say.

  3. Heartbreaking. And eloquent. Thanks for sharing Emily.

    Nancy says she misses you in running class.

  4. I so wanted it to have been wrong. Love you Em.

  5. Lay your head in my lap and cry all you want. We will get through this together.

  6. Your post brings tears to my eyes, Emily. If I were there, I'd want to give you a long, long hug and rub your back and tell you how strong you are...

  7. Thanks for posting on my blog Emily. This post was painfully familiar to me too. You ache to answer the doctors questions for her. You feel bad for making her feel on stage and inadequate. Mom hated seeing her neurologist. She tried to "study" on the drive there, learn the day, date, season, etc.
    It is so hard.Your Mom was diagnosed at 54?! I am 53, so sad.

  8. You captured this the draining day in an elegant way. We love you, including mom! ~~Love dad