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.

Thursday, February 16, 2012

Coming up: Neurology, Writing and Friendship

This weekend is going to be full. I'm excited and apprehensive.

On Friday, I'm visiting the University of Washington medical center with my parents. Mom has an appointment with a new neurologist. Her nursing home staff recommend we get a "second opinion" since they believe her symptoms are more complex than just Alzheimer's.

This gives me equal measures of hope and trepidation. I'm going as moral support, help with bathroom breaks, and to ask my own list of questions. Since Mom's diagnosis five years ago, I haven't participated in any of her appointments (and frankly, wasn't interested in any part of the medical classification or treatment - just wanted to experience it alongside Mom). But curiosity trumps discomfort, and when Dad asked for help, I volunteered.

My grandma also moved into a nursing home this past year and we will visit her, too.

On Saturday, I'm attending a writing class at the Richard Hugo House in Seattle. It was a gift from a close friend (who I get to spend the weekend with!), and I'm excited to learn about this writing community. The class I signed up for is all about metaphors. Can't wait.

Despite all of Friday and Saturday's intensity, I'm looking forward to good Seattle coffee and long conversations (the kind that can span a years' worth of catching up and still be deep and soul filling).

I plan to collect as much blog-material as I can, so stay tuned for an update next week.

Friday, February 10, 2012

How much we know and understand ourselves is critically important, but there is something that is even more essential...loving ourselves.
Brene Brown
What's your reaction to this quote?

Here's mine.

[brakes screeching] "Love myself? Blasphemy!"

I've heard my whole life that SELF must be squelched. Preoccupation with SELF is dangerous.
"Deny yourself, pick up your cross, and follow..."
"The heart is deceitful above all things."
"Think of others more highly than yourself."
When I read things like this, I do a double-take:
Love is not something we give or get; it is something that we nurture and grow, a connection that can only be cultivated between two people when it exists within each one of them - we can only love others as much as we love our selves.
Is this true?

Another thought occurs to me. I feel most acceptable when I see myself through my mom's eyes.

Who am I according to Mom?


In her eyes I am perfect, the same way she is perfect in my eyes. Not flawless, not without weakness, but perfect. She is perfectly her, just as she IS. I don't love her any less in her frailty. In fact, I love her more.

What would it be like if I could offer the same kind of acceptance to myself? What would the consequences be?

Even typing these words feels silly. Frivolous. Juvenile. The part of me that wants to be dignified is shushing right now.

But I'm intrigued. What does loving yourself mean? Is it necessary and important or selfish and wrong?

*Quotes from The Gifts of Imperfection by Brene Brown

Saturday, February 4, 2012

January Book Report: I Thought It Was Just Me (But It Isn't) by Brene Brown

Back in October, a favorite blogger of mine posted a video under the heading: "How I Want to Live My Life." The TEDTalk video was Brene Brown (someone I'd never heard of) talking about shame, worthiness, vulnerability, and living wholeheartedly.

It blew me away. I found her website and blog Ordinary Courage, and loved what I read. She puts into words what I'm experiencing in my family, in my marriage, in my job, and in my faith. I wanted to shout "Where have you been all my life?"

So I bought her book.

She describes her research as a social worker, interviewing women to learn the impact shame has (which she defines as "the fear of disconnection"). What she discovered was that women who are resilient to shame have four things in common: understanding of their shame triggers, critical awareness, support, and language for speaking about shame. She says courage, compassion and connection are all necessary for resiliency.

Her writing is shifting things into focus for me. Like an optometrist flipping various lenses in front of my eyes and determining the strength of the prescription I need, Brene Brown's perspective is the perfect fit for my emotional near sightedness.

Throughout the book, I kept thinking things like, "That's why I react so strongly when I feel dismissed or seen as flawed." And, "Yeah, there's definitely a correlation to vulnerability and fear, but also vulnerability and connection."

The vulnerability I feel while grappling with the impact Alzheimer's has had on my family has been a weird combination of anger, loss, grief and equal measures of gratitude, joy, and appreciation.

I'm discovering how deep-seated my perfectionism is, and how hatred of my own mistakes and weaknesses impacts my beliefs about my worthiness (my subconscious mantra is "I must be perfect so I remain lovable"). Lots of therapy-time has been spent on that one lately.

I usually refer to what Ms. Brown defines as "shame" as self-consciousness (debilitating at times) or insecurity or neediness. My adolescence was spent in a constant state of guilt over sins (real and imagined). That guilt still reappears from time to time, like a storm cloud. I'm re-categorizing all those negative emotions under the heading of "shame."

I dog-eared page 196 where she writes, "When we choose growth over perfection, we immediately increase our shame resilience. Improvement is a far more realistic goal than perfection" (Brown, 2008).

The whole book is chock full of excerpts from the interviews she's conducted and stories of her own experience with feelings of (un)worthiness. She's a professional, highly educated, and her career is loaded with distinguished accomplishments. But her writing is nothing but down-to-earth.

When I finished reading all I could way was, "Dang. How can I arrange a coffee date with her?"

"Celebrate" giveaway results

Wendy's the winner! Your gift is coming soon, Wen.