Maria Shriver

I Will Never Forget: A Caregiving Journey

By Elaine Pereira

Growing up, I thought my mom, Elizabeth Ward, was amazing. That was, of course, until I ventured into the obnoxious teenage period, when she couldn't do anything right. Except for those three or four emotional roller coaster years of my mouthy disrespect, Mom and I were best friends.

Now, my best friend is gone. Alzheimer's has claimed yet another victim, choking Mom's kind, talented spirit to dust, last July 8, 2011.

As I approach the first anniversary of her passing this July, I, like many others, have "survived" (depending on how you define it) all of the landmark holidays without her. She would have wanted me to.

I miss my mom, terribly. But, honestly, "she" was gone a long time before she was, you know, really "gone."

Only I ignored, denied, rationalized and excused (just to name a few) every sign, hidden in plain sight that Mom was fading away.

All of her goofy behaviors, flashes of hostility, paranoia and innumerable other bizarre events speckled here and there over the years, were indicative of a mind slowly eroding from dementia, one brain cell at a time.

Looking back (hindsight is indeed 20/20), there were hiccups in Mom's memory as far back as early 2005. My dad had passed away the previous April (2004). Tragically my brother, Jerry, also died that year after losing his battle to esophageal cancer. 2004 stunk for Mom and I, although I'd really prefer a different "s" word!

We had a small memorial for Jerry at my cousin Mike's in Sedona, Arizona, the following February. Mom, my husband Joe, my daughter Angie and I flew out for it. I was barely in the door at Mike's place when he took me aside and whispered, “Aunt Betty thinks she’s at her apartment in Kalamazoo. She asked this morning where her room was, number 342."

I should have been alarmed that, after flying out from Michigan to Arizona, Mom still thought she was in her apartment! I chalked it up to devastating grief after burying her husband and her son in the same year, but I shouldn’t have. It wasn’t just stress. It was a warning sign, only I wasn't listening.

Over the next five years there were increasingly more incidents of confusion, paranoia and agitation.

Mom lived in an independent senior facility in Kalamazoo, MI. I lived two hours east of her between Ann Arbor and Detroit. I made the trip over to Kalamazoo or made arrangements to have her come to our house for a visit at least once a month.

On one of my trips over, Mom met me at the door, ranting. "They stole my brown pants; two pair!" She growled.

Another time she said, "They took my nail file." (Seriously, a nail file?) Or "seven dollars worth of stamps," and there were more irrational accusations.

"They" were often different people, the cleaning ladies, other residents or staff. Mom adamantly rejected more logical explanations such as having donated the pants, or misplaced the nail file.

"Anybody can get in here." She hissed. I knew there wasn't a phantom, lock pick stealthy rummaging through her apartment in search of an old nail file. I just couldn't understand why she did.

But despite all of the witnessed and reported drama, I still perceived my mom as more functional than dysfunctional. I naively lived in denial and ignorance, blissfully rationalizing how capable she seemed. (The operative word here is "seemed").

My mom couldn't be demented because she still drove, I concluded. She couldn’t be addled because she still paid her own bills. Mom couldn’t have Alzheimer's because she recognized she had memory issues.

What I didn’t know, however, was how many times Mom got lost driving to familiar places as far back as 2006. She drove right past her friend's house, oblivious to the fact that Margene was standing at the end of her driveway "waving to Betty as she sailed by."

Another time, Mom drove 20 miles in the opposite direction meandering around in search of her dentist's office, which was only one mile from her place.

Couched warnings from staff at her senior facility that "Your mom needs more supervision. Betty should be moved," fell on my emotionally deaf ears, until late 2009.

By December of that year, Mom was unraveling quickly and I was emerging from the fog of denial that paralyzed me from being more proactive in her behalf.

I observed Mom's painful attempts to write out checks at Christmas to her granddaughters. Her once impeccable handwriting had deteriorated so substantially, that her numbers were almost indecipherable, resembling random scratch marks.

On a spring visit, Mom's started anxiously looking for her room, the infamous #342, in our house. Then she asked me what I was doing in her apartment!

As the adult, the nebulous abyss of being a parent to your parent is a delicate responsibility. Balancing respect and autonomy and naturally expecting them to be accurate when they tell you, "I'm fine" is a daunting challenge.

Somewhere deep down, you know it’s not true. They are no longer "fine."

I had finally witnessed enough bizarre episodes to recognize the proverbial ugly truth. Mom had to be moved to a secure facility with more supervision. Her memory demise was so substantial that her past and present were entirely blurred.

It takes a village to raise a child or guide an elderly one. Armed with a moving company, my daughter, my husband, two paid volunteers, and my organized, precision-planning skills, we moved Mom on July 12, 2010 to a facility thirty minutes from us.

Of course it wasn't without endless drama. Mom constantly demanded that I take her back home and kicked me in the butt once when I told her I couldn't. Her delusions increased as she reported seeing "your dad in the parking lot" and visions of her own mother, my grandmother.

Mom's final passage began after a surgery to repair a partially collapsed lung in May 2011; Mom never rebounded. She virtually stopped eating as she started to take control of her own destiny and on July 8, 2011, Mom rejoined her boys.

Via book sales of I Will Never Forget, I am donating to Alzheimer's research in the hope that my daughters won't have to write a memoir about my journey through dementia.

From my book I Will Never Forget:

I envisioned dementia as a smoldering fire, its smoke whirling up and down, in and out, around and through Mom's brain. It would choke her orientation to time, cloud her vision or pretzel-twist her gray matter. It always lay in wait, concealed in the crevices of her short-term memory centers, fogging judgment, reasoning, and logic. For a while, it would remain dormant, having already ravaged parts of her mind permanently until, like wildfires, something sparked it to flare up, engulfing and consuming its insatiable appetite for brain cells.

Mom would never get better. All I could do was be there for every step of her journey through hell and pray that was enough. She deserved better; everyone did. She deserved to go out with her boots on, not have her mind chipped and chiseled away piece by piece.

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Elaine Pereira retired in June 2010 as a school Occupational Therapist where she worked with special needs children. She lives in southeastern Michigan with her husband, Joe. Between them, they have five children -- Joe has three sons and Elaine has twin daughters-and soon-to-be five grandchildren. Elaine has a Bachelor’s Degree and Master's Degree in Occupational Therapy from Wayne State University. Elaine is the author of I Will Never Forget. She was inspired to tell her mother’s incredible story in part to help other caregivers coping with memory loss issues in their loved ones.