Zoe FitzGerald Carter

Zoe FitzGerald Carter
Location
California,
Birthday
March 27
Bio
I'm a journalist whose first book, Imperfect Endings (Simon & Schuster) was published last year. It's about my mother's decision to end her life after living with Parkinson's for many years and the struggle my two older sisters and I had coming to terms with that choice. The book was excerpted in O magazine and was chosen as a Barnes & Noble Discover Great New Writers pick. Paula Span in the The New York Times, said "I could quote from this book all day." People magazine said, "Carter coaxes beauty from the bleak." And The Boston Globe called it "an engaging and insightful tale of familial love, understanding, and forgiveness, shot through with a surprising amount of wit." I currently live in Northern Cal with my husband and two daughters. I am available to talk to bookgroups by phone or Skype or -- if they are in the Greater Bay Area -- by person. You can read more about my book or contact me through my website: imperfectendings.com

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Editor’s Pick
MAY 6, 2010 12:51PM

The Wanderers: Free Will, Dementia, and Death

Rate: 12 Flag

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.” 

 

 

             

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A sad but fascinating phenomenon. I really like the way you did a "positive reframe" (as the psych folks say) of something that is generally seen as a danger, nuisance or frustration that is meaningless. I think that even when we are in a diminished capacity almost everything we do as humans has meaning, and you draw from this behavior many possible and logical meanings. I wonder if there's some way that the desire that drives these wanderings could be addressed for folks with dementia so that they might not do it.

But then, if their desire is to escape -- where they live, and perhaps their overall condition or life itself -- perhaps there is no remedy other than death?
I watched my grandmother live and die with demantia and currently my uncle and father are workign their way down that road. I see my future when I talk to him. Your post is spot on. There are worse things than death. Sometimes peace=death.
I live in Oregon where we have the Death with Dignity act. It's worded very well for people with a terminal illness and less than six months to live, and all their faculties intact.

It is not written for dementia.

If I were diagnosed with Alzheimer's, and I had enough marbles still intact, I'd want Death with Dignity. Why should my family spend every last blessed dollar to keep my body alive when the part that is "me" is long gone? I want to go while I'm still me, while I can say goodbye, while I can sit with those I love.

I wish the law allowed for brain-killing illnesses as well as body-killing illnesses.

Great post. Rated.
Damn. I don't know.

Is it a pull to get out of sterile surroundings and exit this life beside the creek? Or is it just some sort of wanderlust that makes them want to move around unrestricted with no real appreciation for the elements? I suppose we'll never know the answer to that.

My mom has dementia and is in a nursing home. Her case is mild, but will likely get worse. Because of who she is/was, and my memories of that, I can't see her going like that. But what do I know? Where is her head really at?

I'm torn with this. Perhaps because I'm going through this now, or many of the boomers have this in common, I'm seeing more discussion about end-of-life issues concerning the elderly. I'm torn because Mom is Mom and I don't want to lose her, but I surely don't want the best girl in my life to suffer needlessly either.

More food for thought. Thanks Zoe.

Tanuss
But you don't need to help them to die. Don't try and fix what isn't broken. They are wandering away, finding their own place to die. I hope that if I get dementia, I will walk a fence line to the river and die of hypothermia - a nice way to go. Cheer them on, don't try to legislate yet another human trait.
Thanks all for weighing in! And I have to agree with Zul and froggy that death can be preferable to living with dementia, at least in some cases. The challenge, of course, is when in the process of getting Alzheimer's are you sufficiently impaired that it "makes sense" to end your life, but not so far gone that you can't carry it off. (Assuming like Froggy, you live in Oregon and this is even a legal option...)
Interesting point you raise about how to address the desire to wander, Silkstone. Certainly this running off is a message of some kind and maybe could be better understood and responded to.
You know, I'm kind of with you Deborah. I like the idea of being a wanderer myself if I'm ever locked up in a nursing home with dementia although I think this could be romanticizing the reality of that "escape."
And just as I wrote about my own struggles to accept my mother's decision to end her life in my memoir, Imperfect Endings, Tanuss, I really understand your tenderness and protectiveness towards your mother. My heart goes out to you.
In the natural world, sick and dying people and creatures wander away from their packs to die.

Maybe this is little more than a remnant of our natural, instinctual selves.
I never thought of this before in this way. My husband had three uncles who had Alzheimer's and they wandered or drove off, dying of exposure. Maybe they knew what they were doing, after all! Makes me feel a little better.
Thought-provoking and informative (the part about the demented taking evasive action was news to me). And comforting, in a way. R.
Your hypothesis makes sense to me. I'd also like to see people with Alzheimer's given more options when first diagnosed (when they still have some ability to make decisions). My friend's mother received an early diagnosis and, because she was a Swiss citizen, was able to choose the time and manner of her own death. She chose to go before her loved-ones became and unrecognizable, and she was able to really plan every detail. It wasn't a happy situation. Alzheimer's is a tragic disease. But my friend's mother was grateful to have some power to handle it in the way that seemed best to her.
From the movie Little Big Man, I recall a great scene:

Old Lodge Skins: Come out and fight! It is a good day to die! Thank You for making me a Human Being! Thank You for helpin' me to become a warrior! Thank You for my victories, and for my defeats! Thank You for my vision, and the blindness in which I saw further! You make all things and direct them in their ways, O Grandfather. And now You have decided the Human Beings will soon walk a road that leads nowhere. I am gonna die now, unless death wants to fight. And I ask You for the last time to grant me my old power to make things happen.
[Lies down to die. After a moment, props himself up on his elbows to add:]
Old Lodge Skins: Take care of my son here. See that he doesn't go crazy.
[Grandfather, who has laid himself down to die, wakes up]
Old Lodge Skins: Am I still in this world?
Jack Crabb: Yes, Grandfather.
Old Lodge Skins: [groans] I was afraid of that. Well, sometimes the magic works. Sometimes, it doesn't.
And I wonder, too, if the wanderer has gone off, in some inchoate way, looking for himself.
R.
Well done. I have a situation similar to the one described, and as it unfolded, the doctor told me this condition is generally harder on those around the victim of the disease than the victim him/herself.
This is true, and while the ill person is generally frustrated, frightened, and fumbling, those around them are in a very stressed position. Sad for all!
A fascinating twist on an ever-increasing problem. I think this way of seeing might help me down the road. Thank you.
It's interesting that there is almost no documentation from those WITH Alzheimer's or other dementias. That's why this blog is so interesting to follow - Joe has Alzheimer's and knows it. When he is able, he blogs about how his AD is progressing, and his reactions. I think those who have guessed that the wanderers are escaping from that life are right - they may have a period of clarity, and make the decision to get away from dementia the only way they can.
Read about Joe here: http://living-with-alzhiemers.blogspot.com/
~fatRocco and feralRusty
Thanks for all the comments, folks. And thanks to The Rescuers for alerting me to Joe's blog. Interesting story, Eva. I've heard about the "Swiss Option" but didn't know it was available for people with dementia. Dementia is usually where even the most stalwart right to die people abandon ship although obviously none of us want to go that way.
Ive worked with Dementia and Alzheimer folks for about ten years. The one story I would like to share is a fellow who kept taking off his clothes. I called another hospital to see if they had any suggestions to help him. The fellow I talked to said not to worry about it. He said he had a patient who wanted to take off his own skin. It is terrible to lose your mind. Compassion and care and yes, even drugs, help.