The Adventure of Alzheimer's


As a child I mourned the loss of frontiers.

It seemed to me that there were no adventures into the completely unknown left, nothing where you met challenges never before encountered.

During my career as a physician and especially during my fifteen years at Joseph's House (our hospice for the homeless), however, I began to recognize the last stages of death as a true adventure into the unknown—a frontier that never disappeared.

It's not that no one has ever died before, of course, but no one has returned to give us a map, so in our own dying each of us enters into the unknown.

Alzheimer's, too, is an adventure, the last stages of which are shrouded in mystery, and each of us with this disease will explore an unknown wilderness. There are lots of people who've gone this way before, of course. Of the 40 million US residents over age 65, almost five million have Alzheimer's.

And although I write this blog to dispel some of the mystery, ultimately neither will I be able to tell others what the last stages are like.

In a recent post on state of consciousness in Alzheimer's, I wondered whether I'll be conscious toward the end when I appear to be completely out of it and, if not, what it will be like.

We don't know.

My using the word "adventure" to describe my journey into the darkness might seem like a form of semantic denial, soft-peddling the likelihood of future suffering for me and people close to me.

I don't believe I'm in denial, but even if I were, does that change the reality that this process will be an adventure?

Perhaps we don't think of Alzheimer's as an adventure because we want happy endings and believe that the word "adventure" applies only to successful adventures, where the hero faces enormous dangers and suffering but eventually returns to tell the exciting story.

But what if the hero does not return from the mountain; or does, but without having reached the top; or does reach the top and returns, but emotionally scarred or physically damaged? Was it any less an adventure?

I'm grateful that I can still sense an excitement. Growing up, I felt cheated of uncharted territory. But each of us with this disease must explore it for the first time; each of us faces a unique adventure.

Editor's note: David's journey with Mild Cognitive Impairment was chronicled in "Fade to Blank: Life Inside Alzheimer's" an in-depth look at the real lives of families impacted by the Alzheimer's epidemic. His story continues on his personal blog on

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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You know I live in a situation which is ideal for me because we have a vegetable garden, places to walk in the forest, I have time to write. I am very sensitive, but a good caregiver. I chose to get paid for caregiving live-in with low pay. That means I do no have to be a constant companion. I take care of a man who came from another country, and with his stroke his language issues became problematic. He is of great benefit to have his daughter next door, and she can talk to him. We have a great deal of quiet, and live with meditators. He doesn't always like this, and has issues with his boundaries. Because I am not paid so much, I can say 'no'. I just cannot be available 24/6. The men in the family chose to abandon him. They don't come and watch movies with him. It's sad, but I cannot make up for what others do not give. The truth is better than burn out. Soon he will have his own computer for Russian movies, as I did seem to inspire him and he has been steadily improving, at times functional and other times not so functional. I still cannot have much of a life away from here, and my friends cannot come over to visit --well occasionally. People have no idea how much a caregiver sacrifices to be available as we are. Everyone wants to be 'so positive ' and 'the best ever'. It's not reasonable and elders can be very very fussy and selfish. Depression is real, it is not going away. It's there for a reason. Time for inner reflection brings humility, something people generally forget.
Well that article brought a flood of tears and recognition. There are volumes in what you've written - and I sense you've just shared the tip of the iceberg. There's an article of a Mount Everest climb - many years back called Mount Everest, Mount Analogue and the Impossible. It speaks directly to your post - and perhaps will introduce you to a book and the work of Rene Dumal. I've had the article since the beginning of the internet and lost the source - but just today I've discovered that its been re-posted and I've got the author's name finally: Duane "Shorty" Lankford