HELP LINE: Don’t dehumanize people because of dementia

THOSE OF YOU who have been paying attention know that I’ve spent the past couple of weeks telling one part of the story of my mother’s last couple of years on the planet, only because it illustrates how long-term care (read, Medicaid) can actually work.

That part of the story is over, but it occurs to me that, perhaps, I should conclude that story with the fun part.

Just so you can have some idea of what I’m talking about let me remind you that she had had a massive, right-brain stroke, which in many ways mimicked dementia, and was receiving very good care in a local skilled nursing facility (read, nursing home). And I visited, a lot.

On one of those visits, very shortly after we had gotten her moved in, I came down the hall to find her in a wheelchair, in the hall, talking with two very young, and obviously very caring aides.

You need to know that my mother was quintessentially social and, thus, quite adept with social cues; you also need to know that, prior to the stroke, she had been fascinated with a currently popular movie about penguins.

She had purchased the movie, and watched it over and over.

As I came down the hall, she greeted me with a huge smile and said, “You know, last night I was watching the video of your wedding [Note: There is no video of our wedding] and it was just so lovely.”

“It is.” I agreed. The two aides smiled, cordially.

“And,” she continued, “It’s just so fun the way you incorporated your penguin into the ceremony.”

“How ’bout that.” I answered, not missing a beat.

The two aides’ eyes went wide; well, OK, actually, they visibly flinched.

Having figured out that I was “the son,” one of them asked, a bit incredulously, “You have a penguin?” … as my mother observed the exchange.

“Mm-hmm,” I affirmed, as I bent down to kiss her “hello.”

Really?”

“Yeah.”

Hesitation, as they looked at each other and my mother looked at them.

“What’s his name?”

“Rudy.”

Hesitation, as they looked at each other and my mother looked at them.

“Where does he live?”

I looked at them, as though the question was a bit … obtuse: “In the house.”

Really?”

“Sure.”

“What do you feed him?”

I looked at them, as though the question was a bit … obtuse: “Penguin food; mostly fish.”

Hesitation, as they looked at each other and my mother looked at them, enjoying the socialness: “Where does he … go to the bathroom?”

“Usually outside. We have a leash. There’s also a litter box in the laundry room …”

And thus began the Legend of Rudy the Penguin.

See, I firmly believe that we have no idea what goes on in the mind of a person with dementia, and leaping to the assumption that they don’t understand what’s being said to them or around them, or don’t grasp a tone of voice, risks disrespecting, confusing and marginalizing that very much alive human being, so I won’t do it.

I just won’t. Period.

The word of Rudy spread throughout the facility, and seemed to grow with each visit: “Do you really have a penguin?”

“Sure.”

“Where did you get him?”

“From a friend who had to move to Tulsa. He was just a puppy …”

“… did you have to … uh …?”

“Oh, yeah. He’s neutered.”

Interesting, no one ever questioned that, as though it made sense to be sure that Rudy wasn’t randomly generating more penguins in the neighborhood.

See, every single time — every time — I’d go in to visit, these questions were always asked well within my mother’s earshot, and she was paying close attention. The legend grew.

“What happens when someone comes to the door?”

“Well, we have to be a little careful — he doesn’t like strangers; actually, he’s a bit of a ‘guard penguin’…”

Really?”

“Yeah. Have you ever seen an angry penguin …?”

And it just went on.

I’m told that Rudy was a source of happy, casual conversation between my mom and facility staff. Something that could be shared.

Did it bother me to lie? No; well, I would have preferred not to, but given the risk of dehumanizing an old lady who deserved better or lying? No.

Months later — yes, months — a nurse finally followed me down the hall on my way out, well out of my mom’s hearing, and asked, “You don’t really have a penguin, do you?”

“No.”

“Then, why …?”

I told her. I told her that I wasn’t willing to take that chance, right in front of my mother. She understood immediately and smiled: “I guess I have some training to do.”

“Well, maybe,” I said, “OK, yes, you do. Because dignity is everything.”

“Yes, it is.”

And gradually, over time, Rudy the Penguin faded away. His work was done.

But to this day, when my best friend or I misplace some little something and we just can’t find it, one of us will say, “It was probably Rudy.”

It probably was.

________

Mark Harvey is director of Clallam/Jefferson Senior Information & Assistance, which operates through the Olympic Area Agency on Aging. He is also a member of the Community Advocates for Rural Elders partnership. He can be reached at 360-452-3221 (Port Angeles-Sequim), 360-385-2552 (Jefferson County) or 360-374-9496 (West End), or by emailing [email protected].

More in Life

African Children’s Choir to sing in Port Angeles, Sequim

The young vocalists are making their way across the West Coast, singing… Continue reading

A GROWING CONCERN: Kale, kale, the gang’s all here

SINCE FALL WILL arrive on the Peninsula this coming Saturday at 6:54… Continue reading

BACK WHEN: Grant Street School, built for Port Townsend, no longer exists

GRANT STREET GRADE School has disappeared. The 61-year-old building was demolished soon… Continue reading

HELP LINE: What to expect with the new Medicare cards

WE’VE BEEN HERE before, but I see that with the growing level… Continue reading

BIRD WATCH: Liven up a long drive with birding

A LONG DRIVE awaits you if Spokane is your destination. Many travelers… Continue reading

Rock opera, quilts, grape stomping offered on Peninsula

An environmental rock opera, quilts and a grape-stomping competition are among the… Continue reading

Hospice fundraiser slated for Saturday on Sequim Bay

The Reach and Row for Hospice, the Sequim Bay Yacht… Continue reading

Sand sculptor Kali Bradford brings artwork to fundraiser

World-renowned sand sculptor Kali Bradford plans to create a special… Continue reading

Sequim actress to present ‘Lillian Carter Story’

“The Lillian Carter Story: More than a President’s Mother”… Continue reading

Most Read