Monday, October 27, 2008

The Fog of Alzheimer\s as Character

"Linda, Linda, LEENDA," Mother would scream out to small groups of strangers strolling by while we sipped tea together on the patio of a local coffee house. This was to be a happy weekly outing—a short walking distance from the assisted living facility that was now her home, yet she'd spend most of it calling out my name to others. I tried to shush her, insisting that I, that Linda, was right there in front of her, but she'd just turn and look back at me and say, "Huh . . . oh," and stare.

Then after a bit of silence the outburst would begin all over again.

At first, Mother had enjoyed these little excursions because we'd stop to window shop among the assortment of boutiques along the way. Mother would walk with my help and that of her walker while smiling at various families with small children in hand. She never tired of admiring the little ones and often reached out to caress a chubby baby cheek or sweet little downy head, exclaiming, "Hay, que preciosa." But as the weeks and the months progressed her degenerating memory removed her ability to know me any longer and I, in turn, felt as if my past, my childhood, and part of my life had been erased.

I was her only daughter, one she had named after the Spanish word for pretty because, she'd said, I was so pretty and perfect at birth. Of course, I often had to remind her that being delivered via C-section just maybe was the reason for the perfect part. No molded head from a trip down the birth canal. I was scooped out of her belly by Dr. Hilton, a relation of the eponymous hotel chain owners. But that's another story and it's one she had long forgotten.

Often, prior to moving Mother out of her home, and into assisted living, she would call me twice or three times a day chastising me in a mix of Spanish and English for being a bad daughter. I was trying to put her in jail, she proclaimed. Funny, that was also how she referred to her lovely home with a large backyard pool in a clean and quiet suburb of Los Angeles. This labeling of her house as a place of incarceration began shortly after she lost her driver's license and I sold her car. Macular degeneration had already robbed her of her passion for spending uninterrupted hours reading her beloved books. The addition of a paid companion didn't help as Mother referred to the poor beleaguered caretaker as her a jailer. Mother's only connection with the rest of the world was via the loud booming audio from CNN, Animal Planet or anything on Telemundo from her TV, which ran all day and into the night.

Like the mother character in my epistolary novel Letters Between Us, Mother also suffered from Alzheimer's. And like the protagonist, Laura, in the novel, I too couldn't take the intensity of the incessant phone calls filled with harangue, harassment and name-calling. While I worked on revising Letters, Mom was still very much alive at 95 years of age. However, she was growing more paranoid, angrier, and more intractable every day. I was growing sadder, more frustrated, and more desperate every day. What do I do to keep her safe? How do I not rob her of her freedom to come and go? These questions of creating limits in her life at the expense of her individual rights plagued me. I knew that soon her live-in attendant would not be able to control Mother's outbursts and odd behavior. She would walk out to her backyard and wander around the pool at 2 a.m. and refuse to come back inside. She rebuffed attempts to get her dressed or to bathe. One afternoon, after a particularly difficult call from her, I wrote the following exchange:

"You just want to send me to hell."
"No, Mom, you're doing that all by yourself." My hand starts to strangle the receiver.
"What have I done to you that you hate me so much?"

Truth is the dialogue is almost verbatim. The circumstances I describe in my novel are fiction. But these kinds of conversations went on and on for the better part of a couple of years and I thought rather than try to ignore this most difficult period in my writing life, I chose to incorporate the pain and agony of coping with an elderly parent ridden with Alzheimer's by making that part of her a character in my novel.

Giving myself permission to do so freed me to write passages about Mother that worked well in the narrative. The narrator of Letters is trying hard to balance complex issues in her life and having a parent force herself into the mix fueled by the fog that Alzheimer's creates in the brain cells gives Laura, yet, one more issue to contend with while showing her as a compassionate person. We can all relate to our daily balancing acts while juggling many balls in the air. That is how life is and it's not going to slow down anytime soon.

After a very painful phone call with Mom shrieking at me about why I was an uncaring and nasty daughter and then a follow up phone call where Mom wanted to know how I was as if she'd never made the previous call, I wrote the following paragraph and just saved it in my computer, forgetting about it:

Her remembering depends upon where she is in the caverns of her
mind on a particular day at a particular hour, moment, or second. It's as
if she is walking on a street, lost, but then an alley pops up, and she has
a vague recollection from twenty years before of a painted red doorway
halfway down that alley she spies, and she thinks she might have even
walked through that door, but then again, maybe she just passed by it,
or perhaps someone she knew walked out of it and embraced her, and
they might have even stood in front of that red door and talked for a
time, but about what she is not sure, but again maybe they didn't, and
she has confused that red door from the one on the street with another
just around the corner and maybe she just needs to take a quick run
over there and see if that red doorway is really there, but then she
forgets where she is, and why she is there suddenly, and on and on.

Later, I was struggling as to how elaborate on the mother character's confusion about situations in Laura's life and found this passage again and thought wow, why not use it, and so I rewrote it again with a very slight modification and inserted it into a chapter of the novel. And it works. Perhaps I shouldn't admit this, but I wonder why not? The advice I have heard given to many aspiring writers is write what you know and in this instance I did. I don't know if I will again, but I could not ignore the big white elephant in the room, in my brain. Alzheimer's, on second thought, isn't a white elephant at all, it's a dark, big, black cloud that storms leaving many drenched with an aftermath of despair.

The thing too about Alzheimer's is that it takes time, sometimes years, to confirm as a diagnosis. Meanwhile, if one has an elderly parent who suffers from a memory lapse now and then, we, in society, accept such acts as typical. We say: Oh, you know Mom is getting a bit forgetful. We accept this because it is an easy way to excuse strange, different, or eccentric behavior in an older person. Even as younger persons, we'll often excuse our own forgetfulness and say: Oh, I can't remember what I had for breakfast this morning so if Mom, at 95, can't, so be it. It's okay.

Well, actually it's not. It's not okay to have to spend thousands of dollars a month in care for such a person (and believe me to hire any type of care does cost that much), or if thousands aren't available then the need to move a parent into his/her child's home and be a burden to them that can be overwhelming is even more not okay, (I write this as I just finish reading an article in the newspaper about a daughter arrested for elder abuse for leaving her 85 year-old mother covered in her own feces and urine who died later for extended periods of time). Skilled nursing homes are not always okay, but sometimes are a necessity, and cross your fingers on finding a good one.

My experience was that Mother's affliction and my anguish in dealing with it created a platform for me to write about it by venting, which then enabled me to use those characteristics in my novel. Maybe that too is not okay. Mother was not the person who died at 96 from Alzheimer's robbing her of her memory, her speech, her life and leaving an empty shadow of a woman. She was a woman who adored her grandchildren, adored me, adored meeting me for coffee or tea and hanging on my every word and who never faltered in insisting that her advice on child rearing was better than mine. If she called my name it was in love and kindness not in anger. Alzheimer's destroyed that part of her and part of me is still destroyed by it. And that is just not okay.

About the Author:
Linda Rader Overman is a Professor of English at California State University, Northridge. Her work encompasses fiction, and nonfiction consisting of multifaceted elements including photographs, narrative portraits, images, texts, personal and social history, poetry, letters, and diaries. Her epistolary novel Letters Between Us is published by Plain View Press. To learn more about her, and to receive her newsletter, visit http://lindaraderoverman.com.

Keyword tags: books, authors, writing tips, characters, plot, story development, publishing, novels, Alzheimers

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