where the writers are
The Wanderers: Free Will, Dementia and Death
Amazon.com Amazon.com
Powell's Books Powell's Books

Back in the early 1990’s, Sam, a family friend with Alzheimer’s slipped undetected out the door of his nursing home and wandered into a freezing winter night. He was found the next day, dead from hypothermia, at the edge of a stream. A charming, bright-eyed man who’d never lost his deep southern drawl, Sam’s death was a cause for great sadness, although we all felt the real loss had happened many years before.

According to The New York Times, “wanderings” by people like Sam are reaching new levels of frequency as the nation ages. In Virginia, searching for lost and confused dementia patients has become the most common search scenario, outstripping the hunt for lost children and adolescents. And in Oregon, the number of searches for lost male Alzheimer’s patients nearly doubled last year to 26 from 14 in 2008 – a number that had tripled since 2006.

About 6 in 10 dementia victims will wander at least once, according to health care statistics, and these numbers are going to keep rising as the devastating effects of Alzheimer’s cuts a swath across the nation’s elderly. At this point, the mind-robbing disease affects half of the people over 85 in this country, and like other degenerative diseases, such as Parkinson’s and multiple sclerosis, Alzheimer’s has no cure. 

As anyone who has dealt with a partner, parent or grandparent with Alzheimer’s knows, the dissolution of self – often beginning with the loss of words and short-term memory  – is a long, slow train wreck. In the latter stages of the disease, sufferers no longer recognize or respond to their spouses or children and often can’t remember their own names. At this point, caring for an Alzheimer’s patient at home is often impossible and many sufferers are put into nursing homes or Alzheimer’s facilities.

Reading the Times story made me think of Sam and a theory I have long held about people like him. I have always suspected that these “lost” wanderers are motivated by something entirely sane and intentional. Even as their brains have atrophied, their ability to think and reason gone, some instinctive desire to extricate themselves from their circumstances remains. And in a momentary flash of clarity – an open door, an unguarded path -- it takes charge and they are gone, perhaps on their last great trek, their final Walkabout. A testament to their still-cogent, if entirely instinctive, desire for freedom.

Of course, freedom for these escapees will often mean “freedom” from life. But can we blame someone for wanting to escape life when that has come to mean living in restraints in a nursing home surrounded by strangers, confused and alone? Is it any wonder that wanderers like Sam frequently talk about their desire to “go home?”

Perhaps the notion that these wandering souls who light out for the hills are “choosing” to die is romantic -- or even macabre. And certainly one feels sorry for their frantic caregivers, left to imagine their husband or mother out there alone and in danger. But as I read about this epidemic of wanderers, I wonder if they are, in fact, driven by some remaining shred of logic or desire, rather than simply confusion or fear.

According to the Times, wanderers often follow fence lines and tend to be drawn towards water.  They also hide in attics and locked closets. What is consistent is that these patients don’t want to be caught. According to Robert B. Schaefer, a retired F.B.I. agent, a “dementia wanderer” will sometimes take evasive action to avoid detection.  So while they may not know their name anymore – or your name – they have the wherewithal to hide, or run away, following natural landmarks to avoid going in a circle and ending up back where they started.

Do we really have to think very long or hard to understand why these patients might want to get the hell out of there? Rather than see this rash of escapees as one more manifestation of their disease, maybe we should see it is a reflection of what is still healthy in them: their capacity for action and thought.

All but the most radical fringe of the right-to-die movement will balk at the idea of helping people with dementia to die, and this is as it should be. People need to be in their “right minds” to make such a choice and free will exists only if there is a clear, conscious ability to make a decision and act on it. But these wanderers aren’t playing by our rules any longer. They have their own agenda. And maybe we should listen to what they are saying about what they want.

I contacted Sam’s daughter today and this is what she had to say about her father:

“I was upset, of course, angry and stunned when he escaped from the nursing home, but by the time of his memorial service, I was cheering him on.  He was not the kind of person who could tolerate such a place, which was a decent one at the time but still put him in physical and probably chemical restraints a lot due to his wandering into other peoples' rooms.  I am very, very glad he got out of there, got out of his diseased body. And having made my peace with losing my father long before, it was in a way, a relief.  It is what he experienced on the way that I don't like to think about. But very few people have an easy exit from this life.” 


4 Comment count
Comment Bubble Tip

What an intriguing way to

What an intriguing way to look at this phenomenon. I've worked with Alzheimer's sufferers and know that sometimes flashes of lucid thought happen at the darndest of times. I've always hoped that if I were to come down with that horrible disease, I'd be able to take myself out of the picture when the loss of self was too much to bear.

Comment Bubble Tip

Thanks for your comment,

Thanks for your comment, Susan, and I agree with you! The problem is when to do it? Somewhere between suffering the effects of the disease and losing your capacity to act. It's a tough call...

Comment Bubble Tip

I just started your book,

I just started your book, Zoe, and already your mother reminds me of mine. She is bright, feisty, irreverant, and doing well at 87. Tomorrow she's going to a peace demonstration with a few of her left-leaning friends in the retirement residence where she moved a year ago. But for at least the past decade, my mother has been talking in an  admiring (almost giddy) way about the Hemlock Society, Kevorkian, etc.  It makes me cringe! I refuse to talk about it. Not the best response, I know. I've become a little more understanding of her point of view recently, as I've watched another elder in my family (my mother-in-law) develop Alzheimer's.  So now I've started to face the reality that my mother already understands: old age has many different outcomes, and some of them can become intolerable. So I  look forward to finishing your book. It comes at a very good time for me and my family.

Comment Bubble Tip

To Blair

Thanks for writing and sharing your story, Blair. I wish you and your mother all the best -- she sounds wonderful! But I certainly relate to the "cringing" at the conversations about Hemlock, Kevorkian, etc. As you know from reading the book, I was not very excited about this option. Very best to you, and Happy Mother's -- and Daughters' of Mothers -- Day.