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Published May 18, 2014, 04:54 PM

Whiting: Dementia not shameful despite handling by ‘experts’

Grief counselors often talk about the five stages of loss: denial, anger, bargaining, depression, acceptance. Some people follow the pattern, while others jump between stages.

By: Lonna Whiting, INFORUM

Grief counselors often talk about the five stages of loss: denial, anger, bargaining, depression, acceptance. Some people follow the pattern, while others jump between stages.

As my mother’s brain failure evolves, I find myself wavering between acceptance and anger. I accept her new behaviors and daily challenges. I accept I can’t make her better. I accept the responsibilities of daily caregiving.

But I do not accept the blatant ignorance of those among us trained (and often paid quite well) to help families like mine. In fact, when doctors and social workers – so-called “experts” in their fields – dismiss dementia and Alzheimer’s because it’s an inconvenient reality, I tend to get a little angry.

In a recent New York Times article, Dr. Danielle Ofri, author of “What Doctors Feel: How Emotions Affect the Practice of Medicine,” wrote about how embarrassing it is for her and her esteemed colleagues to make a dementia diagnosis.

Ofri describes the tedium of diagnosing an elderly man with Alzheimer’s: “There was something almost shameful in bearing witness to a fellow human being’s profound indignities,” Ofri writes. “I was embarrassed for him, for how embarrassed he would likely be, if his former self could see his current self. My colleague and I ducked out of the room in silence, lost in our own private stew of unease, wincing at our unspoken keenness to move on to other patients.”

Months ago, upon asking my mother’s primary care physician if he saw many young onset cases, he responded, “Not often, thank God.”

Ofri’s colleague echoes that sentiment, exclaiming: “A fate worse than death!”

I’m horrified to know the most revered medical professionals among us would consider my mother’s condition an undignified, shameful fate worse than death. This perspective is frightening considering the growing millions among us who are fighting the “long goodbye” every day.

The perception of dementia as undignified isn’t isolated to the medical field. It seems to have spilled over into the social work field as well. I experienced similar reactions when dealing with county financial intake workers. At best, they addressed our urgent questions, concerns and pleas with occasional form letters mailed out every month or two requesting the same information we gave them five times before.

Most certainly, those workers felt similar to Ofri: ducking out of the room, keen to be moving on to less shame-inducing clients.

Ofri feigns empathy by claiming doctors are forced to focus on diseases they can treat and cure.

“In the dishearteningly limited time of a medical visit, we’re forced to focus on the diseases we can treat,” she says.

I’m sure Dr. Ofri and a few others would be surprised by what they find if they took time out of their incredibly busy days to listen to dementia patients and families discuss the disease.

It’s not a fate worse than death.

It’s not shameful.

It’s not undignified.

Dementia is a learning moment, not only for victims and families but also for doctors, social workers and societies as a whole. By interacting with those who have brain failure, we learn the fundamentals of all that is good in humanity: sharing patience, offering gratitude, providing comfort.

I invite Dr. Ofri and her colleagues to visit with me any time about how doctors should feel when opening the exam room to diagnose someone with dementia. Perhaps she and others will then truly understand this is not a disease with which we can ever close the door. It is a global health crisis begging for medical and social activism.

Unlock the door. Look deeply into the faces of victims and families. In them you will see the injustice created by misperception, ignorance and fear.

Now, let’s fix it.


Lonna Whiting is a copywriter at Flint Group in Fargo. Her mother was diagnosed with early-onset dementia at age 61. Whiting can be reached at lonnawhiting@gmail.com. To get involved in local advocacy work, visit www.facebook.com/youngchampionsfm

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