The Alzheimer's Digest: from inside the diseased mind...

A retired physician and accomplished author, Dr. Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment, which he says is almost certainly Alzheimer’s disease. His voice offers a profound perspective that will help caregivers to better understand what it’s like from inside the diseased mind.

I'm curious about what will happen to my state of consciousness as I enter more deeply into this disease.

At present that consciousness feels no different from any other time in my life. Toward the end, however, I'll be lying in a bed apparently unconscious.

But will I be unconscious?

If I am conscious then, what is that experience?
If I'm not conscious then, what are the gradual changes in consciousness that will happen between now and then?

On the Saturday before the Oscars, Marja and I went downtown for a showing of the five films that were nominated as the best "short films." A French film, Henry, made a deep impression on me.
From the beginning, the film felt confused, almost surreal. It flipped back and forth in time and was full of strangers who kept acting as if they knew Henry, the main character. But they kidnapped him, forcibly injected him with drugs, and kept him helpless in restraints. He met earlier versions of himself and of his wife.

It was all very bizarre until, over half-way through the film, I finally tumbled to the fact that Henry was demented, and the film was showing his world from his point of view, his own experience of the world. Mostly he was in his own demented world, but his sense of himself didn't seem to change as he passed back and forth. As far as Henry could tell, he was the same person whichever state he was in. Of course, this was only a film, and Henry's sense of himself was only fiction.

But how does the inner state actually change as this disease progresses?

An older friend once told me of an event shortly before her husband died with Alzheimer's. He had been completely out of it and intellectually unresponsive for a long time.

My friend visited her husband at the nursing home and, during the middle of her visit, his dull eyes seemed unexpectedly to find their focus, and he began a normal conversation that lasted some minutes. He seemed lucid, and in those few moments they re-kindled their emotional bond. He was cognitively present to her.

What happened?

Presumably we'll someday be able to describe physically what happens in the brain to bring about such wild swings. But what was his experience? Was he conscious of himself during their conversation? Was he in some way conscious of himself when he was out of it? What changed as he went into his wife's world and then out of it again?

In Henry's fiction world there was no real change in his sense of consciousness as he moved between the two worlds. Is that what happens?

Several people have said that emotional presence is one of the last lights to go out as Alzheimer's progresses. The experience of the staff at Joseph's House is that there moments when Joy, the woman afflicted with Alzheimer's ("Grace and Joy") is still sometimes emotionally present. What is her experience in those moments?

How little we know about this disease. Fifty percent of people 85 and older have Alzheimer's. yet we know almost nothing about what the experience is like.

I was surprised that the movie didn't frighten me. Henry's experiences seemed mostly "interesting."
But it did help me to realize how little I know of what's coming, how naïve this blog may later seem. And Henry's experiences and those of his care givers—along with the questions that the film raised in me—strengthened my determination to bring a bit more light to this disease.