By MARGARET MACKEY
It seems to me dementia, regardless of the etiology, is among the cruelest of all diseases. As I’ve been visiting my mother in the skilled nursing facility and rehab I have seen more clearly and more closely than I would have liked to the degree to which dementia robs a person of their life and of their dignity.
One day at lunchtime, we sat across the table from an elderly woman named Claire. White shoulder-length hair, brushed back from her face in a somewhat fashionable way, I wondered about her past life, who she had been.
She sat strapped into a wheelchair, a towel-bib around her neck, a nurse by her side telling her to open her mouth and take a bite. “Now close your mouth, Claire.”
She burst out with nonsensical words all strewn together. I turned to Cindy, who was sitting at the end of the table, next to her mother, Maria.
Cindy came to help her mother eat lunch every day. Although 65, her dyed long hair and trim figure made her seem much younger.
She cared for her mother at home for six years, until the sleepless nights became too much for her, and she had to bring her mother here.
“I’ve been wondering what life was for these people, before here, before dementia came in and robbed them of their memories,” I said to her. She motioned to Claire “She was a lawyer.” Somehow I wasn’t surprised. I had a sense she had led an exciting and productive life in her younger years.
After lunch we went to sit in the parlor, a medium-sized room with a big TV and an even bigger picture window that looked out onto a wooded, snow-covered hillside. Birds frequented the bird feeders outside, and residents loved to gather there.
Joy wheeled herself over to us. Cindy told me, “Joy hates everyone!”
“I have noticed that!” I replied.
Joy’s character stood in stark contrast to her name. She was stylishly dressed with long, finely manicured pink nails and a classy hairdo. She wheeled herself all around the unit, spewing out nastiness everywhere she went—calling people witches and worse and complaining about everyone and everything.
Was she always like this, I wondered? Or would her younger self be mortified to hear herself and see what she had become? Did she once hold her babies close and whisper words of love to them? Did she have a family? Who was she?
As we sat there beside Joy and her cruel words, another woman with tiny braids all over her hair started to shout, “Police! Police! Police!”
A young aide hurried over and gently took her hand and said, “What’s the matter, honey?”
The woman said emphatically, “I need to get to Troy!”
“Where?” asked the aide.
“Troy! T-R-O-Y! Troy!” The aide continued to talk with her in the way I’ve learned one has to with this disease—entering into the world of the person with dementia, being in a conversation about long ago when life made sense, but somehow winding the conversation around to a place where they feel safe and comforted now.
All these workers did it effortlessly. They’d been doing it for a long time, I presumed.
Just then the lady raised her right hand to the sky and started to pray.
“Dear Lord Jesus Help me! Help me! The clouds are here. It’s dark. I’m in the storm! See me through the storm dear Lord Jesus!”
I wondered who she was, this little woman shouting prayers to her God. I wondered about all of the people here.
And I realized why it is was that every time I introduce my mother to someone new—be it someone at church, a neighbor, a doctor, a nurse, or anyone we meet—I tell them about her.
“This is Grizzly Joan from Yellowstone. She hiked nearly every trail in the Park and came face-to-face with a grizzly! She white-water rafted down the Yellowstone River every year for her birthday, until she was 83! She helped build houses with Habitat for Humanity in her 70s and volunteered at the local food pantry until she was 85!”
As I sat on that day among so many whose lives and personalities had faded almost completely away, I realized the reason I do this is I want people to see Mom as so much more than an old lady with dementia. I want them to realize that she has lived a full life, a good life. Most of all I want her to remember who she is, the things she has done. I want people to treat her with respect, and they do.
When they begin to hear of her exploits, they perk up, and the conversations begin and she smiles brightly as she helps retell the story of meeting the big grizzly in Yellowstone one hot summer’s day so long ago. MSN
Margaret Mackey’s mother, Joan Mackey of Livingston, Mont., passed away last November.