On an autumn day on October 6, 2005, our Irish clan piled in the office of Dr. Peter Holt, a geriatric internist in Kansas City. We were at the appointment to find out what ailed our 80-year-old Mom, Marge Doyle. When Dr. Holt opened the door to his office, he seemed surprised to see the Doyle family filling every inch of his office space. He affectionately gave us the nickname of the Doylies.
I immediately liked Dr. Holt, a tall, good-looking man with salt and pepper hair, a Kansas City boy, who after finishing medical school at the University of Kansas, completed a fellowship in Geriatric Medicine at Stanford. Returning home to practice medicine with the seniors, his sense of humor helped him handle the serious problems his patients faced – arthritis, Parkinson’s Disease, Alzheimer’s, strokes, cancer, heart disease and the everyday problems of getting old.
Dr. Holt wheeled over to Mom in his chair so that he could talk to her face to face. He tried to get Mom to explain why she had this appointment today. Mom thought the Doylies had forced her to come.
Dr. Holt was concerned when he discovered that Mom had no medical records, although she lived in the Kansas City area her entire life. It’s true – Mom never went to doctors except for the birth of her five children, with her youngest child being in her early forties. So we were starting from scratch here with no medical records.
My brother wrote a short history of Mom’s medical problems from his memory and from photos of Mom to illustrate his points. One photo of Mom from a year earlier showed Mom appearing to weigh more than 200 pounds with her short 5’2” frame, while at today’s appointment she weighed in at 98 pounds and looked like a malnourished concentration camp survivor. And she hadn’t even been on a diet, and no one could explain the weight loss.
A few years earlier, cooking had become too complicated for Mom. My brother and his wife stepped in and provided their own version of Meals on Wheels. Mom devoured their delicious home-cooked food.
Mom’s problems seemed to have started with the turkey incident several years ago when she dropped her baked turkey on the kitchen floor on Thanksgiving morning. The turkey meltdown forced my brother to scrounge around Kansas City to locate a baked turkey for Thanksgiving dinner in a few hours.
My siblings discussed Mom’s hallucinations (or as one of my sister called “Mom’s little delusions”). Mom was preoccupied with death and destruction, killing all of us off in her mind, a new funeral everyday for her sisters, her kids and her grandkids. And her hallucinations were scary and terrifying.
“What are you doing here?” Mom asked my brother, “You’re supposed to be dead. You can’t keep coming back from heaven like this.” For that moment my brother was the favored one, while the rest of us suffered in eternal damnation.
When Dr. Holt asked Mom her name, address and phone, she responded, “My name is Marjorie Doyle, and I live at 9235 Woodman. I know my name!” But she couldn’t remember her phone number. She dismissed it with a chuckle saying “I never have to call myself.” Now she can’t remember any of these important demographics.
At that appointment, Mom started calling herself Miss Marjorie or Miss Margie, as though she’s talking about another person. Marge and Mom were no longer in her vocabulary.
When the doctor asked Mom what day it was, I glanced at my daily calendar, so I could answer correctly. Mom didn’t have a daily planner and didn’t know the answer.
And Mom’s personality had recently changed. Her sweet, prim and proper, shy temperament had been replaced by cantankerous behavior and foul-mouthed language.
I was concerned that Mom might have Parkinson’s Disease. I told the doctor that I was diagnosed with Parkinson’s ten years earlier, and that I observed Mom’s stiffness and slowness when she moved, balance problems with always being on the verge of falling, her lack of facial expression, stooped shoulders and posture, and shuffling steps.
I gasped when Dr. Holt tested her balance by having Mom get up from the chair without using her hands. Mom nearly fell backwards.
At the conclusion of the appointment, Dr. Holt referred Mom to a neurologist. The neurologist confirmed Dr. Holt’s suspicions of the diagnosis of Lewy Body Dementia (LBD), a disease that we never knew existed. LBD is the second most common kind of dementia, with Alzheimer’s being the most common.
LBD is a complex blend of the confusion and memory loss of Alzheimer’s Disease, the stiffness and slowness of Parkinson’s Disease, and the hallucinations and delusions of Schizophrenia.
And only yesterday, I learned that Mom has the same disease as Ebenezer Scrooge of A Christmas Carol. In "Diagnosing With Dickens" by Lisa Sanders, M.D. in The New York Times Magazine on December 17, 2006, Dr. Sanders consulted with her nephew, neurologist Chance Algar, M.D. about the diagnosis of Scrooge and stated that:
“This was dementia, he told me, but not the most common forms – not Alzheimer’s or a dementia caused by multiple small strokes. No, this was a recently described variety known as Lewy body dementia.
Symptomatically, this disease lies at the intersection of Alzheimer’s and Parkinson’s disease and was first fully recognized in 1996. Although I saw Scrooge as a man without any medical problems, Chance explained, I had missed some subtle clues in Dickens’s description. The words used to portray Scrooge might apply to many with Parkinson’s disease: expressionless, rigid, nearly immobile. Dickens writes, “The cold within him froze his old features ... and stiffened his gait.” He also has a tremor, a symptom common in Parkinson’s as well as in this strange dementia. But the hallmark of Lewy body disease is the real clincher in this diagnosis: vivid and detailed hallucinations featuring friends and relatives are common. And like Scrooge’s visions, these phantasms are distressing, often terrifying. Finally, in Lewy body dementia, hallucinations occur early in the disease, frequently before the cognitive deficits are apparent.”
Lewy has a grip on Mom. I only hope that I can remember her as the Mom of the past instead of the Lewy or Scrooge of the present and future.