May 2, 2014

Why Are So Many Oblivious to the Reality of Dementia?

Nowadays, I try to find ways to express my challenge to all who make little attempt to achieve real communication with my mom.

Pamela R. Kelley
Alzheimer's Reading Room

Throughout the years as my mother’s care partner, I’ve witnessed countless examples of professionals in health care, social services and other “caring” roles who seem oblivious to the realities of living with dementia.

Yet, they continue to interact with my mother and her peers with little success, blaming those failings on dementia.

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The responsibility, I think, rests elsewhere.

Like Bob, I believe that success often lies in developing the communication skills that allow us to relate and interact effectively through the fog of Alzheimer’s.

Since I am not personally contending with cognitive impairment, I’m the one who has to learn some new skills. Putting the responsibility for learning squarely on those who have the better capacity to learn seems obvious.

How bad are some at communicating? 

Here’s an example; I promise I am not making this up or exaggerating one iota.

When my mother moved from our home to an assisted living facility, I worked with its activities director to arrange for a Catholic priest to come in monthly to say Mass for the Catholic residents.

The diocese sent over their guy who was assigned to minister to the elderly. He attended to the spiritual needs of Catholics in various residential settings. He was familiar with the reality of profound memory impairment.

And yet. His enthusiastic Easter sermon was built around a joyful message he’d learned as a boy from his Ukrainian mother. He explained that they recited, back and forth, in call and response style, two phrases: Christ is Risen. Truly he is risen.

He translated these two phrases into Ukrainian, and recited them again. Then, he divided the assembled Catholic residents into two groups and asked them to repeat after him. In Ukrainian. First me. Then you.

I really tried to participate. None of the residents could.

They struggled to remember the phrase in English. And they certainly couldn’t learn the Ukrainian in an instant. The priest noticed that the participation wasn’t going so well. His inspired solution – let’s switch! Now this half says what the other half couldn’t, and visa versa.

Back and forth he went, half a dozen times, without any happy participation from his congregation.

Faster and faster he urged them to join in his Ukrainian reverie. Of course, they simply could not. Their confusion and discomfort seemed invisible to the priest standing in their midst.

Imagine my reaction when, one year later, he recycled that identical sermon the next Easter. It was even less successful than the first, because that time I didn’t lend my voice. I was thinking, “With all due respect, Father, you can do better.”

The assembled Catholics were giving him lots of not-so-subtle clues that this wasn’t working with them. Their silence. Their eyes darting back and forth to try to see what others were doing. They knew they weren’t measuring up.

Their sincere questions -- “What did he say?”

“What am I supposed to do? – spoken loudly in their normal tones. All signs of being ill at ease, of confusion, of worry. Early warning signals of agitation.

This was supposed to be a spiritual balm, not a burr under the saddle.

As a witness to this scene for two years running, I was mortified.

Afterward, as I helped put the activity room back into its normal configuration while the priest packed his bag, I said, “That didn’t work very well for this group, Father.” He was in denial.

“Oh, I think they liked it. It’s a fun way to share the joy of Easter.”

I explained that for my mother and her neighbors, it didn’t appear that they were having fun. It’s pretty difficult to learn new things on the fly. To assimilate the instructions and act on them in an instant. To change the instructions before they’d gotten the first phrase down pat. To attempt Ukrainian, which held no meaning for them. The entire sermon seemed to highlight the ways that memory loss forms a barrier, and to remind them of their loss yet again.

The priest sighed and blamed dementia for their inability to participate in his fun. 

I sighed and inwardly blamed his inability to see that he needed to alter his behavior to meet these souls where they were, with words they understood, at a pace they could follow.

Last week was the third year for the Easter service. My mom no longer attends Mass, but I participate to assist the other Catholics who are comforted by the familiar ritual of the Mass. When I heard the same priest mention his sainted Ukrainian mother, I gritted my teeth. But we’d made some progress. This year, the priest tried the call-and-response in English.

Sure, this is one of the more glaring examples of deficient communications that I’ve witnessed.

Nowadays, in examples big and small, I try to find ways to express my challenge to all who make little attempt to achieve real communication with my mom and those similarly situated: With all due respect, I think we can do better.

Have you had a similar experience?

*Pamela R. Kelley is a caregiver for her mother. She lives, works and writes in Anchorage, Alaska.

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