Those afflicted with dementia cry out, 'I'm still here!'

COFFEE WITH WARREN, with Warren Harbeck
Cochrane Eagle, May 24, 2006

It all started over a mug of freshly-brewed dark roast with Cochrane coffee companion Kate Millar at Java Jamboree. But what really was brewing that day was a better understanding of how to relate to people afflicted with dementia.

We got into a discussion concerning the respect our senior citizens rightly deserve. We were particularly thinking about those times when they become confused and disoriented.

Kate began reflecting over people she's encountered through the years who suffer from dementia.

"I've watched as many struggled, with great difficulty, to remember parts of their lives that were once very rich and productive," she said. "Now all that were left were fleeting, fragmented memories. I was filled with compassion for these souls and couldn't help pondering on the depth of the human spirit. I wondered if there was still more in there that I was just unable to see, and realized indeed there was."

Readers of this column already have some inkling of Kate's beautiful sensitivity to the needs of others, as, for example, when she shared her experiences in healing the poverty of spirit among street kids in Kitchener, Ont. (column of Apr. 19). Now she was passionate about addressing similar poverty of spirit among folks with dementia.

She shared two stories to explain her passion. These are stories that have "changed the way I see people and moments in our lives," she said. The first story was about one of her brothers.

"Many years ago my brother had a very serious brain injury and as a result thought and spoke like a three-year-old child," she said. "It was a very frightening time for our family; we feared the brother we knew and loved was lost to us forever.

"One month later, however, I received a letter from him. It was written with a childlike scrawl, but the words were overwhelming and moved me to my soul. He had written the words to a Bob Seger song, 'Against the Wind.' At the end of those words – the most profound I have ever heard – he said: 'Don't believe what they say. I'm still here!' Somewhere in the depth of confusion in his mind, the spirit fought its way to the surface, to scream out for recognition. It was demanding to be known."

Seger, of course, was singing about someone who once had his act together but had become a despairing drifter who laments: "I found myself alone surrounded by strangers I thought were my friends."

Kate went on to speak of something very personal she experienced in her own life years ago, a time when she "suffered greatly," she said.

"I'm sure that many who knew me were shocked by the changes in my appearance and the brokenness of my spirit. There are many things I do not recall from that time of my life. But the one thing that remained true and was forever inside was the strength of my spirit that screamed out to be recognised with the same words my brother used: 'I'm still here!'"

After Kate and I finished our coffee chat, I went home and did some Google-sleuthing on dementia. I learned that of those 65 and older, one in 20 suffers from dementia, and that the rate rises to between 25 and 50 per cent of the population by age 85.

Of these, most have Alzheimer's disease, with the remainder experiencing dementia from stroke-related and other causes.

Too often, those impacted by dementia, both those so afflicted as well as their family and friends, become frustrated and irritable. Relationships become strained. As aids in coping with such situations, plays, films and workshops have been produced along the theme, "I'm still here."

Often, a simple phone call to seniors facilities and services will access many helpful resources for understanding dementia.

In my May 5 column I wrote about happiness-author David Ambrose and his embrace of the South African concept of ubuntu (roughly defined as "my wellbeing is directly related to how I affect your wellbeing"). I saw a connection between ubuntu and Kate's concerns and queried David about this.

"I agree with you on the connection," David responded. "In fact, the treatment of those with dementia is often the opposite; we dehumanize them to protect ourselves, imagining that we will never be like that."

For re-humanizing the relationship, I give the last word to Kate:

"It is my prayer that we look deep into the souls of each other, offering hands of kindness at such moments of great despair. May we always remember that, contrary to outward appearances, a spirit could be struggling to say, 'I'm still here!'"

© 2006 Warren Harbeck

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