Snapshots of Dementia: Prone to Wander
“You never know. I might get out.”
This phrase, or some variation of it, comes up every so often in conversations with Tom. Although he struggles with both memory and language, his sense of humor remains intact. He thinks the tracking ankle bracelet he wears is unnecessary, but he complies with it because a. he likes the deputy who helped us get it, and b. I keep reminding him he wears it for my peace of mind.
The peace of mind part is all too real. I wrote here about how I had to rush home from work one hot Florida day because he had (against a friend’s counsel) left home to walk to a mall about four miles away for an errand that could easily have waited until someone could drive him. Ultimately, I had to get the police involved in finding him.
Although that story had a happy ending, I’ve never forgotten how it felt to drive the neighborhoods, praying and crying as I searched for him.
Not long after we moved to South Carolina, I heard from one of the Facebook dementia support groups I belong to about Project Lifesaver (from its website):
Project Lifesaver is the premier search and rescue program operated internationally by public safety agencies, and is strategically designed for “at risk” individuals who are prone to the life-threatening behavior of wandering. The primary mission of Project Lifesaver is to provide timely response to save lives and reduce potential injury for adults and children with the propensity to wander due to a cognitive condition.
I also learned through another connection that Project Lifesaver was available in our county. By that time, we had had two more incidents of Tom “wandering,” both during the week (April 2020) a tornado hit our area. Our home had no damage, but the storm knocked out our power for almost a week.
That very first day, our routine was much different than normal as we checked on neighbors and waited on the power to return. And also on that very first day, Tom took off without telling me where he was going. Fortunately, I saw him leave and was able to bring him back without incident.
But later that day, we moved to our daughter and her family’s home because they still had power. During the week we were there, Tom took off on another walk, destination unknown. This time, he refused to come back when our daughter called to him. She had to jump in a friend’s truck and chase him down—another scary time.
As soon as I learned that our county had Project Lifesaver, I contacted our local sheriff’s office, which manages the project. The ankle GPS units are issued via grants, and none was available. But within only two months, the deputy in charge contacted me to see if we could come in to have Tom fitted.
That’s where the phrase “I might get out” started. Somehow during our conversation with the deputy, she spoke of people with dementia wandering, or “getting out.” Tom found that highly amusing, not realizing that he had, in fact, “gotten out” more than once. And although he forgets many things, he has held onto that phrase ever since.
And he’s also gotten out. Every once in a while, usually when our routine is different than normal or when he decided he needs to do something right then, he has taken off without saying a word to me. Our small home and video doorbell help keep me aware of any unwanted exits. But a few times, he’s gone out on a short walk and forgotten that he was supposed to come back within a few minutes.
The most recent time this happened was when one of our daughters was staying with him while I was away. When he didn’t return promptly, she drove around to look for him—and found him in the opposite direction from where he was supposed to be. He hadn’t meant to wander; he had just forgotten his boundaries.
In other words, he “got out.” But he doesn’t realize that. And we haven’t told him.
Knowing that if we ever have the need, a quick call to the sheriff’s office will result in deputies turning on the GPS connected to his ankle bracelet and quickly locating him has made all the difference for our family. I’ve come close to making that phone call at least twice. And I’ve thanked God for Project Lifesaver far more often than that.
I should note that this resource is available not only for people with dementia but for others with a cognitive condition (autism, Down syndrome, bipolar disorder, or something else) that could lead to wandering. I know that the families of people also “prone to wander” must experience the same peace of mind as I do. Our wonderful deputy friend visits to replace the battery in Tom’s ankle unit every two months, and I check it every night with a tester Project Lifesaver provides.
Not long ago, a friend from our church told me an organization she belonged to, the Pilot Club, helped bring Project Lifesaver to our county years ago. I believe the American Legion was also involved. I hope they know the difference their generous giving has made.
If you know someone living with dementia, I strongly encourage you to check here to see if Project Lifesaver has come to your area. And if it hasn’t, maybe you can help change that.
Because sometimes people get out.
Do you know someone living with dementia who, like Tom, is prone to wander? How have you handled this situation? Is Project Lifesaver available where you live? Feel free to share your thoughts in the comments below or on social media. Our story matters, and so does yours.
My husband’s mom lived with us and was prone to wander due to her dementia. I’ll never forget the fear knotted in the pit of my stomach the first time it happened. Thankfully, we found her quickly, but it was a sobering wake-up call teaching us to take additional precautions.
Oh, Marti, you and Tom and your family are in my prayers!