Wanderlust or Wander Must? A new understanding of wandering behavior

Not all who wander are lost... But some of them are: Do we really understand Wandering behavior?

I’ve seen big changes happen in the senior living industry over the last couple of decades as the world has grown to better understand why dementia occurs and how to constructively interact with people living with dementia.

When I first started writing training guides for my company in 2001, we were talking about “difficult” behavior. That is, we were defining behavior around how it generally made caregivers feel. Later, we began using a much better term, “responsive” behavior, that reminded us that behavior is a response to a stimulus, a form of communication. This was a vast improvement.

But I think we’re still missing the bigger picture. Over the years, I have come to see responsive behaviors as something larger, a struggle toward the fulfillment of an existential purpose. Sounds a bit grandiose, I know, but this understanding is what has helped me in understanding my own mother’s “quest” through this illness, fighting to retain her place in the great narrative of humanity. If we want to understand wandering – understand it at the deepest level – then we need to look at the stories we tell ourselves about ourselves. Would you wander with me a few minutes to see if this resonates for you?

A lifetime ago, when I was in graduate school studying American literature, a great author told me that there are only two stories in the world: a person goes on a journey, or a stranger comes to town. That was over 20 years ago, and I’m still thinking about that compelling idea. If we buy this, then all of our human stories are about wandering: either we wander to new places, new people, and new ways of thinking, or they wander to us. All of the tales we tell and the excitement of our lives are intimately tied to the road: adventure, despair, joy, loves won and lost, devastating defeats, and victories achieved. When people have dementia, do they simply stop having a story? Do they step out of the great narrative of life?

When your loved one wanders, are they participating in their story? The BIG existential story of who we ARE in this great big universe?

Is it fair to compare your loved one’s wandering to Gandalf booting Bilbo out of his door in The Hobbit?! All I can say is that maintaining this distinction helps me reframe my mother’s behavior in a way that helps. I remind myself that she does so because she is engaged in her story. It’s still disruptive and dangerous, of course, but if I stop and remember that she’s living her story, then I can reframe my own internal conversation more effectively.

For instance, a few weeks ago, when my mom became convinced in the night that men were coming to kill her, she packed up a suitcase and tried to elope. She didn’t succeed, but it was a scary and dangerous moment. Her wandering had to be addressed and taken very seriously, but I was also able to appreciate my mother’s fighting spirit, to see that she is still passionately engaged in her life’s adventure. The courageous spark that I remember is still alive in her. She is still fighting to contribute her verse to the great story.

Of course there are physical reasons for our loved ones’ behaviors: pain, discomfort, a need to go to the bathroom, insomnia. There are emotional reasons: sadness, irritation, longing. All of these are crucial. But there are also existential reasons for the behaviors we see, causes that are tied to our very reason for existing as human beings. If we don’t see our loved one’s journey as a part of the Great Journey, can we respond to their needs and behaviors with a full heart?

Stories and literature are fundamentally important to how I am able to make sense of our world. Given that, I’d like to close this essay with a few lines from Alfred, Lord Tennyson’s poem “Ulysses.”

This poem follows the great hero Ulysses in his declining years, now an old man. Having returned from the Trojan war in the prime of his life, Ulysses left behind adventure to be a husband and king. Tennyson imagines him as restless, looking for one more quest. He knows he is diminished but would seek what glory he still can. I wonder, in my last years, when I look at myself in the mirror, will I see Ulysses looking back, yearning for one more go at things? It seems that my mother still sees the hero in herself. Though much is taken, does much abide? I believe it does.

elumenEd’s 2-part Wandering Video Series

Over the last week, our parent company elumenEd published a 2-part video series dedicated to wandering and elopement. This series contains several practical reasons why people with dementia attempt to elope, and there are also several simple, inexpensive, and pragmatic suggestions for redirecting that behavior and preventing a serious problem. For instance, do you know how to set up a doorway so that someone with dementia will be less likely to even see it? Find out how in part one below!

The videos below are about 5 minutes in length each.

More resources for wandering

The discussion in the videos above covers a wide range of options you can take when dealing with wandering and elopement. If you’d like additional resources, check out these exceptional articles:

• Wandering (Alzheimer’s Association): a detailed run-through of causes, warning signs, and what to do when wandering happens.

• Dementia and Wandering: Causes, Prevention, and Tips You Should Know (A Place for Mom): this is another classic take on wandering and what you can do as a caregiver when it becomes an issue. Lots of great tips here.

• Immediate Steps to Take if a Loved One With Dementia Has Wandered Off (AARP): this is a great list of the steps you can follow if a loved one elopes. It addresses this particular situation — after elopement has happened — much more completely than the previous two articles. My recommendation: bookmark it and print it out.

• 5 Strategies To Redirect Someone With Dementia (Medicsignal Blog): You’ve found them! Your loved one eloped and half a mile down the street you’re standing in front of them, ready to take them home! And they flip you off and say “make me!” What now? It’s time for some serious redirection. Check out this article for some great tips.

Help with wandering from elumenEd

Until now, I’ve spent my career building training for the American healthcare machine. I created elumenEd to bring this crucial information out of that sterile, clinical environment and make it available to caregivers in the home and family spaces. Below are some materials related to wandering that range in price from free guides to just a few dollars that help us keep the lights on.

• 5 Strategies for Understanding the Unmet Needs of Your Loved One (FREE Guide): This guide contains the five most likely “culprits” for needs that someone with dementia may not be able to verbalize. Are you seeing dementia behaviors like wandering or agitation? Start by addressing these care factors.

• 50 Activities You Can Do Right Now (FREE Guide): This guide contains 50 activities that encourage participation in daily life, promote quality interaction between you and your loved one, and require little to no setup.

• Responsive Behaviors: Wandering - ($4.99): this is a brand new online training module built to help you learn about the causes of and responses to wandering behaviors. This is the same kind of training that I built for professional caregivers for decades. It’s just a lot more fun and useful because I can focus exclusively on helping caregivers instead of pleasing the corporate overlords!

• Creating Purposeful Engagement - my book available through Amazon (free on Kindle Unlimited, $0.99 for Kindle, $5.75 paperback): this book is all about how we can engage our loved ones in the daily activities of living their lives. You might think of it as a vast expansion on the “50 Activities” guide above. Orchestrating and reliably creating moments of engagement is the focus.

Each of the above resources was crafted with a lot of love. They aren’t the standard clinical fare that I’ve seen far too much of (and I bet you have too). If you try them, I’d love to hear what you think. You can always reach me at [email protected], or leave a review at the site.

Thanks again, Newsletter family. Good luck in your journey this week, and I’ll see you next time.