The Illogical Song

Every time I crossed her threshold, I knew was entering an alternate reality –Painting by Vuillard, 1891

Hallie, guess what? Natalie Cole visited the nursing home this week!

Oh, Mama, I don’t think so. I don’t think Natalie Cole was at your nursing home…

But she was! She is so beautiful. I almost told her I knew her father, but I didn’t want to bother her.

Oh, Mama…

In the early days, I tried to counter every offbeat comment with a careful, measured explanation. On issues large and small, I tried to steer my mother’s thinking.

And when that failed, I tried to prompt her words. I thought if I spoke calmly–slowly–rationally, I could put her mind on the right track.

I thought I could talk her back to reality.

Do you remember?

Do you understand?

Listen to me!

But I was the one who needed to listen.

I was the one who needed to understand.

During my first visit to the nursing home, she excitedly told me that she had been to lunch that week at UCLA, her alma mater. As she described her adventure, I interrupted:

No, Mama, you didn’t go to UCLA this week. It’s too far. You were here all week; you live here.

I did so go to UCLA!

No, you didn’t.

Hallie! How can you say I wasn’t there? I was with Kaye and Florence and Mary. We talked about where we would live next…

No, Mama, you were here.

I went to UCLA! I have a letter. My friends’ names are on the letterhead. I will show you the letter!

She was angry; agitated; combative.

And I was responsible.

I had transformed a happy conversation into a confused, volatile encounter. Even worse, I had ignored her most significant words;

her most revealing thought:

We talked about where we would live next.

If I had been truly listening, I would have realized that Kaye, Florence and Mary were friends from her college honors society. She had invoked a stellar academic achievement of her youth, as well as the blessing of her lifelong friends, at this critical juncture in her life.

As with many of her fantastical revelations, there was a core truth in my mother’s statements. I didn’t realize it then– but it was my job to parse her words; ponder her meaning; find her reality.

It was my job to listen.

The core truth: my mother needed to decide where to live next.

She needed to own this decision.

If she insisted she had discussed her dilemma at lunch–with her friends–on their beloved college campus–

what difference does it make?

If that imaginary lunch led to her very real decision, who cares?

She cared.

Years later, she enthusiastically grabbed her nurse’s hand and proclaimed:

You know, before I came here, I did careful research, and this is the very best place in Los Angeles.

Not one word of that sentence was true.

All of it was true.

I began to understand that every time I crossed the threshold of the nursing home, I entered an alternate reality

Hallie, Hallie, guess what? I am going to be honored by UCLA!

Really? UCLA is honoring you? What’s the occasion?

I am being honored for my contributions to the field of basketball! They must have read about me!

Oh, Mama, that’s wonderful! What will you wear?

During our decade of dementia, I could never becompletely sure about my mother’s fantasy world. I learned that unsettling truth just a few weeks after Natalie Cole’s purported visit.

I was reading the nursing home’s newsletter. The Resident of the Month turned out to be a songwriter.

(Wait…a songwriter?)

Not only was she a songwriter, but she was in the Songwriters Hall of Fame.

(oh no…)

My eyes glazed over as I read the next words. The Resident of the Month had written hit songs for several artists

(Oh Mama…)

among the artists

(I never should have doubted you)

the great

Natalie Cole.

My mother and her friends were deciding ‘where to live next’–The women of the UCLA honors economics sorority, 1937: –Only those women who are Economics majors and who have a very high scholastic average are eligible for membership…”

I am deeply saddened to learn of the death of Natalie Cole. I have made minor edits to this post, originally written three years ago. My mother had indeed met her father, Nat Cole, as she and my dad attended the Capitol Records annual Christmas gathering at the home of the company’s president in the early days of Capitol. My mom reported that Nat Cole used to play the piano and sing at these gatherings– a favorite Christmas memory, long before dementia imbued every memory with doubt.

The New Scarlet Letter

Dementia? 

The head nurse was right.

Of course, she was right.

Direct and unflappable, her words were clear.

My Mother had dementia.

But the head nurse was the only one who used that word. Even a year later, her doctors hedged their evaluation:

“She has significant cognitive difficulties…” wrote the neurologist.

“The results…are consistent with early Alzheimer’s disease…” wrote the internist (emphasis mine).

I understood their delicate choice of words; I realized there couldn’t be a definitive diagnosis.

But it took me years to learn what those careful words meant. And even after our “decade of dementia,” I am not sure I understood it at all.

Dementia/Alzheimer’s is a myriad of conditions; a multitude of behaviors; each with an unpredictable path; all of it painful.

But more than just painful; dementia has the power to shame.

And that shame is compounded by the underlying sense that if she just tried hard enough, she could think of the word; tell the story; find the road;

Recognize her daughter.

I believe Dementia is the New Scarlet Letter.

I say this because a friend’s father is forgetful and confused. To her, the signs are unmistakable.

But her sister claims he is faking; he just wants attention.

I say this because a friend’s mother has Alzheimer’s; once vibrant and popular, no one comes to see her anymore.

Suzanne is alone. Is it just too painful to witness her decline?

I say this because when I first said dementia, people said I was disrespectful. Friends would visit my Mother for twenty minutes and declare: she is fine!

For years I heard the chorus: she is fine.

I say this because I had tremendous difficulty finding resources to guide me through the labyrinth of physical, legal, social, moral, and financial issues. I received a lot of flawed advice.

For years I doubted my every decision.

And I say this because up until the moment of my Mother’s death, I never completely grasped a simple truth:

I could not ease her pain.

For years I confronted my mother’s dementia as if it were one more challenge. I came from a world where if you studied hard; you did well in school. You worked hard; you got a promotion. You picked the right partner; you got love.

Nothing prepared me for this.

I share these experiences with no small amount of trepidation. I am not a doctor, nurse or social worker. I do not have encyclopedic knowledge or answers to profound dilemmas.

But I do have stories: what we witnessed; what helped; what I would do again; a lot I would do differently.

I hope through sharing these stories, A Swift Current can be the source of ideas and even refuge. I welcome you to share your stories with me.

And together we will say the word

And not be ashamed.

Dementia.

The Three Windows Will Barnet, 1992, oil on canvas, Smith College Art Museum