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Lonna Whiting, Published January 12 2014

Whiting: Political apathy hurts families of dementia victims

“Ms. Gregory, I’m going to have you memorize a few words that I’ll ask you to repeat in a few minutes. Ready?” the neurologist asked my mother.

“ ‘Apple. Mr. Johnson. Charity. Tunnel.’ ”

“Oh jeez, I don’t know,” Mom answered, giggling in that way she does when she faces social discomfort or uncertainty.

“Repeat after me. It will help you remember for later,” he said patiently.

“ ‘Apple. Mr. Johnson. Charity. Tunnel.’ ”

“OK, a fruit … a man name,” Mom looked to me for answers. “I can’t remember the rest.”

It was hard to watch. My mother was utterly incapable of recalling four simple words, even though to this day she can rattle off the names of childhood acquaintances.

“Try again,” the doctor said.

I wanted to make up excuses for her: “She’s never had a good capacity for memorization. … She’s just nervous. … If you left the room, I bet she’d recall those words for me.”

I crossed and uncrossed my legs, answering for her in my own mind: “Apple, Mr. Johnson, charity, tunnel. It’s easy, Mom. You can do it. Why can’t you do it?”

But before I could feed more into my own denial, she gave up.

“I don’t know. I’m sorry,” she said.

Like many dementia victims, my mom’s memory is fleeting and delicate. For example, she still understands what it means to have hurt feelings, but she can’t always remember what made her sad. I imagine it’s like noticing a bruise on the back of your arm without being able to recall when you bumped into something hard enough to leave a mark.

It’s the caregivers and family members who bear the kind of pain that’s easily recollected. It hurts that I can remember the four words my mom couldn’t. But it hurts worse when good people ignore the urgent need to set in motion plans for adequate care assistance and research funding, especially leaders who can make a real difference.

According to the Alzheimer’s Impact Movement Congressional Scorecard (alzimpact.org), Sen. Heidi Heitkamp (D-N.D.), Sen. John Hoeven (R-N.D.) and Rep. Kevin Cramer (R-N.D.) have failed to co-sponsor and support the Health Outcomes, Planning and Education (HOPE) for Alzheimer’s Act bill in the current 113th Congress.

The HOPE Act would ensure that individuals who “meet the specific diagnostic criteria for dementia” receive an official diagnosis in order to provide early treatment options that will improve prognosis and quality of life for both the victim and caregiver.

The act also specifies that anyone with a dementia diagnosis have the condition permanently documented in all medical records. It is a critical step toward assisting in the diagnosis and care plan for a disease that has no cure or treatment. In light of the fact that there is nothing we can do yet to slow the progression or prevent Alzheimer’s and other dementias, signing the bill is clearly a no-brainer.

While I urge my North Dakota leaders to step up and support the HOPE Act, my mind keeps repeating the four words that sealed my mother’s fate: apple, Mr. Johnson, charity, tunnel. If I someday cannot recall them, then I’ll know it’s time for my own neurological exams.

I most certainly expect by then our leaders will have advocated for the HOPE Act and other research opportunities so that my experience and millions of others like me will have a better prognosis and quality of life in face of one of our biggest fears: Alzheimer’s disease.

Lonna Whiting is a copywriter for Flint Group in Fargo. Her mother was diagnosed with early-onset dementia in September 2013 at the age of 61.