Traveling Lost

I do not like the feeling of being lost.  Being lost gives me hives.  It makes me breathe erratically and I wring my hands. Okay, that’s a bit of an exaggeration, but not by much.  When I’m lost (which isn’t very often because I have an aversion towards it) I think thoughts like: “What if I never make it back?  Do I have my affairs in order and are my wishes put where people who care can find them? Does anyone care? I really should have told him/her where I was going… or where I thought I was going.   Why didn’t I drop breadcrumbs or tie a bandana… somewhere…”

Doug used to love being lost.  He considered it a great adventure.  I considered it a waste of time, usually a waste of money, and always a waste of precious energy I could be using to save the world somehow.  I have said it many times, the invention of the GPS single-handedly saved our marriage.

When we returned from a European excursion that included a trip to Spain, England, Scotland, and a few other hotspots, we were thrilled with the photos.  The one of Doug and me on London’s Tower Bridge is a favorite.  So is the amazing sunset over the Mediterranean. But some photos we have of that trip confuse me.  They are beautiful and green, some with sheep, a sheepherder, and a barn.  One with a cobblestone street and an amazing arch.  One of a town square… I look at those pictures and I have no idea where we were.  Looking at those pictures raises my blood pressure a point or two because it reminds me how lost we were most of the time.

The truth is, traveling with Doug was traveling lost most of the time.  And the craziest thing is, he usually preferred it that way! 

We were in the middle of Spain in the middle of nowhere with no idea where we were or how to get back to our luggage that was safe in a cozy hotel room with a view.  Out on this lonely road, after aimlessly wandering for what I considered “way too long” we happened upon a road construction crew fixing a random hole in the road.  Doug decided to stop and ask for directions because he was tired of listening to me whine.

I was curious how this would go.

Doug knew not a word of Spanish.

He approached one of the construction guys, showed him a map, and shrugged his shoulders with an exaggerated hand gesture that clearly communicated he was lost.  After pointing and nodding and smiling and finally shaking hands, Doug returned to the car, made a U-turn and we were back to the hotel by dark.  He saw the whole experience as a grand adventure.  I was exhausted.

By the time we finished up the trip in London, I was leading Doug around, with map in hand, and refusing to follow him anywhere off the beaten path. To my credit, that’s when we got the great picture of us on the London Tower Bridge.

I am not wound quite as tight as I was back then, but I still don’t enjoy being lost.

Recently I took Doug to the grocery store.  It was crowded.  I felt responsible to keep him close because cluttered environments can be unsettling for him and get him easily turned around. Dementia complicates even the simplest or most common activities quickly.  In Doug’s dementia normal, he no longer enjoys being lost.  Being lost, especially in a crowded environment, can cause him penetrating anxiety.

Doug is typically calm when I am within arm’s reach.  He is okay when he can see me, but he is quickly beside himself if he loses track of where he is or where I am.    To my chagrin, Doug often follows behind me like a duckling following its mama.  I get why he does that, even though I feel a bit like the Pied Piper of one.  It makes it easier for him to see me. 

I have learned that dementia affects vision (it affects everything eventually, but vision is one of those subtle surprises that happens when you’re not watching). For Doug, his peripheral vision is affected.  I have been told that the vision can become cave-like.  It is like peering through a pair of binoculars or wearing horse blinders. Over time the vision becomes almost exclusively forward-focused. Doug doesn’t verbalize this about his eyesight, but he does say he likes things out in front so he “knows it’s there”.  He turns his head, and sometimes his body, in a formal sort of way to the right and to the left to see things you and I would see peripherally.

I prefer Doug to walk alongside me and not play follow the leader. When grocery shopping, I will sometimes hold his hand or have him help me “push the grocery cart” by holding onto the cart with at least one hand. Doing this forces him to walk beside me, where I can see him, instead of behind me, where I cannot. The caveat, however, is that he struggles to see me peripherally when he is beside me, triggering lots of head-turning and general uneasiness.

We had finished shopping and were preparing to join a checkout line. I carefully scanned, trying to determine which line would be the quickest and easiest for us. I was counting carts, analyzing their contents, and evaluating the proficiency of the checker.  If the checker is newish at the job and a cart is heaping with produce, you can forget getting out of there before your next appointment.  I know you know what I mean.  We all do it!  If the cart has a bunch of soda, cereal, chips, dog food, and no produce, then a quick checkout is a sure thing. 

My scan led me away from the hired help and to the self-checkout line.  It would be faster… I thought. I didn’t consider the produce in my cart, the eggs, and the fact I had more than 15 items – I guess there is a rule that nobody talks about, but everyone expects when using the self-checkout line, 15 items or less! 

I began by awkwardly scanning the oatmeal container.  I could not find the bar code. The scanner wouldn’t beep.  Impatiently I looked at Doug (who was oblivious to my struggle) and then at the checker who was overworked with 6 or 8 (too many) self-scanning stations in her charge.  I felt the eyes of the people in line boring into me because I was slow. I had maybe 17 items (more than 15 for sure), and Doug wasn’t helping.  I could hear the critics questioning, really loud in their heads, “why is he just standing there, he should be helping her.”

The self-checkout grocery store line peer pressure was mounting.  I used the picture lookup button to ring in the Produce because I didn’t realize it is important (when doing self-checkout) that all the Produce you pick should have a barcode sticker attached. It makes it way easier! I was slow and flustered, I admit it.  But the real issue happened when I picked up the eggs. 

Yep, the flimsy carton sagged, and three eggs fell out and broke onto the scanner. Now I had the attention of the overworked checker and the people in line!  The checker swooped over, rag in hand, and went immediately into cleaning mode.  She handed Doug the flimsy carton of eggs (I assumed to move it out of the way) and then said to him, “Why don’t you go get another carton of eggs.” My brain, at this point, was on overload, and my agitation was intensifying.  Doug, going to get eggs was not an option! He gets lost in the grocery store if his back is turned to me. Roaming through the store trying to find the egg section was an impossibility.  I boldly, probably too loudly, completely flustered, said, “No! No, he won’t get eggs. I mean, he can’t. No… I will just take the eggs.”

I grabbed the damaged carton of eggs out of Doug’s hands and shoved them into the bag.

The checker looked totally befuddled.  She had no idea why I responded as I did.  She didn’t know Doug has dementia or the difficulties involved with taking him shopping with me in an effort to break up the monotony of his days. She was completely unaware of the pressure I feel to keep Doug healthy and happy, well-fed, and entertained.  She didn’t realize that being lost anywhere, even in his own home (which is a reality), can cause penetrating anxiety.  She didn’t understand that when out and about, Doug needs an escort everywhere he goes, even to the bathroom.  She didn’t know that Doug is the best person I have ever known and that I miss him terribly every day.

No, she was just an innocent, lovely person doing her job when I lost it.  I couldn’t get out of the store fast enough.  I felt like the walls were pressing in on me, like I saw once on a Batman and Robin episode when I was ten.  I grabbed Doug’s hand and forcibly led him out of the store with the broken eggs bobbing precariously atop the bag.

Dementia affects everyone, not just the one with the diagnosis.  Days can be good, and days can be not so good.  With dementia, traveling lost is routine.  I am learning how to forgive myself for being the one who’s lost and for those uncharacteristic outbursts.  Meditation, taking a deep breath, and prayer help with that.  So does making peace with the moment.

I calmed down as I placed my arm around Doug’s waist and walked with him slowly back to the car.  “It’s okay”, I told myself. “We’re okay,” I said to him, “and right now, in this moment together, we have each other, one day at a time”.

“One day at a time,” he repeated.

Karen