Here We Come A-Wandering

This song lyric became my “ear worm” today. It’s an old Christmas carole and a quick google revealed the first verse…

Here we come a-wassailing

Among the leaves so green;

Here we come a-wand'ring

So fair to be seen.

My friend Shannon is always finding meaning in everyday experiences like finding random items on the ground or hearing a song lyric that sticks with her. I first heard the term “earworm” from her and have taken her advice to pause a moment when one embeds itself to see if there is hidden meaning for me.

When I paused today, I began thinking about wandering and rummaging, things we often see people living with dementia do - sometimes repetitively and relentlessly. 

In college, I remember being taught to search for the reason behind a distressed response in the person living with dementia. If we take the time to do so, we often find that it can reveal an unmet need. So I started thinking…Why do we wander or rummage? Usually to find something. What are we searching for?? We are looking for something we are missing, be it a prized possession or something intangible like adventure, safety, calm, fun, purpose, etc.

I think it's the same with dementia. People living with dementia are seeking something when they roam. The “something” is often difficult to determine especially if they can no longer communicate their needs effectively. But if we take a moment to walk with them, we may receive a clue that can help us meet their needs. Their needs are human needs and no different than our own. Just like us, what they are searching for may not be an actual item, but something intangible like safety, purpose, fun, or connection. If we take the time to search with them, I’m convinced that our presence alone can help make the journey more enjoyable and less lonely.

Phil was my first private client. Due to his bright mind and athletic talent, he was recruited to play college football on a team that won the national championship twice. Unfortunately, Phil played at a time when less was known about concussions, and “getting your bell rung” was part of the game. His wife, Darlene, reported that the only time he was removed from a game, was after receiving a hard blow to the head and hustling over to join the opposing team’s huddle! Phil’s older siblings were in their 90’s when I met them. Both were sharp and vibrant and I can’t help thinking that Chronic Traumatic Encephalopathy (CTE) likely contributed to the development of dementia in Phil.

Following college, Phil attended medical school and became a beloved physician, poetry lover and family man before dementia came knocking. His confusion caused him great anxiety. A mind that once was so capable was utterly lost when it came to understanding where he was and what he was supposed to be doing. When I visited, Phil was frequently found roaming the halls of his memory care community or searching for something in his room or more problematic, in the rooms of other residents. He would ask (often incessantly), “Where’s Darlene?”  She was his stability, what kept him grounded and secure. He trusted her to provide guidance when he no longer could rely upon his own mind. Phil always wore his watch and referred to it frequently perhaps because knowing the time of day gave him some point of reference. 

Phil needed a tour guide. Someone to tell him what was going on, what he was supposed to be doing and what was coming up next. There was visible relief when I told him that Darlene would be visiting at 7pm, there was nothing specific he had to be doing at the moment, and that I would be with him in case he had any questions. The activities we did together gave him a sense of purpose and occupied his mind. If his anxiety began ramping up, we could look at his watch, remind him when Darlene was expected, and refocus attention on the task at hand.

Recently, I was reading a travel blog and the author pointed out that “eagerness to arrive at the destination often inhibits our ability to enjoy the moments before we reach it.”  This rings true for me as I often find myself impatient to take action to get over my own discomfort about the unknown. Finding meaningful things to do with Phil engaged his mind and helped relieve his discomfort and distress about the unknown. For him, activities that combined movement and music like Tai Chi were calming and I think, in his own way, Phil was using movement in the form of wandering to soothe his anxiety. Phil was a highly intelligent and capable person who no longer could trust his own guidance. 

People living with dementia can trust our guidance if we take the time to pause, try to understand their needs and offer to be their tour guide. We may not know where we are headed but our companionship almost always makes the trip a little easier.