A Matter of Trust

I remember being at a camp one summer as an adult and eeking out the courage to participate in a grand adventure.  The “High-Rope-Course”.  This was an obstacle course in the trees, high high, high up off the ground.  I was harnessed, wore a helmet, and was lifeline clipped onto the course.  The goal was to move through the obstacles (tight ropes, ladders, swings…) one right after the other and finish with a grand finale.  I confidently stepped, balanced, and tackled one obstacle after the other. 

I was puffed up and proud. I thought I had this high-rope course mastered.  I remember thinking, “What’s the big deal about this anyway?” (Except it was waaaay high in the trees, and looking down made me a bit nauseous).  But then… I arrived at the grand finale. 

The grand finale was a letdown in appearance.  There was no big “You’ve Arrived!” sign or “Congratulations, you made it this far!!” cheering squad.  Alas, just a small piece of wood, a tree, and a trapeze. 

To complete this test of trust and bravery, I had to stand on a small triangle block of wood attached to the trunk of a huge tree.  The piece of wood I balanced on was smaller in diameter than my feet were big. The grand finale, the grand poobah, of this high rope course required me to jump into thin air.  It required a lunge, a leap, a swipe, a crazy amount of bravery.  It required me to propel myself forward into nothingness and reach for a trapeze, about 6 feet out of my reach, that was supposedly going to carry me down to the ground with the final thrill of a zipline adventure.

This is when I fully understood the purpose of the harness, the helmet, and the lifeline attached.  This is when I thought I would throw up.  This was when I knew I was past my limits and probably going to die in the descent.  This is when trust and courage instantly vanished into distrust, fear, and tears.  I had a lump in my throat the size of Texas, but I pretended to have the courage of a lion.  Truthfully, I was choking back the tears of my 3-year-old self needing my mommy. 

I felt the tree in my back.  My body physically trembled. There was a spotter.  His name was Wayne. I met Wayne before I started this crazy charade.  He was over 6 feet tall, as strong as an ox, and had straight white teeth and a colorful tattoo on his left arm. Wayne was on the ground.  Waaay down there on the ground.  He looked like a sapling, about 2 feet tall, and his tattoo was indiscernible.  He held the other end of the lifeline.  He hollered up from the ground in a barely audible, lost in the distance between us, encouraging… “Yooou….caannn…. dooooo… iiiit…..” I thought I was going to faint.

My trust was challenged to its max.  I froze.  The leap was impossible for me.  There were too many variables.  What if I miss the trapeze?  What if Wayne was not as strong as I thought he was?  What if I get going too fast and crash into the ground with an explosion of dust and bones?  Is Doug a good enough father that he can raise the kids by himself? Do I have enough life insurance to cover this disaster? 

Nope.  I couldn’t do it.  I didn’t jump.  I had to be assisted off the block of wood.  I became the cowardly lion.  My puffed-up pride disappeared into thin air.  I suddenly lost all trust and confidence in pretty much everything and everyone on that high-rope course that day.  I wanted to have more control.  I needed to be sure.  I just. Could. Not. Jump.  

But… The good news is… I am alive to tell you about it!

Despite the assumptions you may have about the story I just told, most of the time, I trust easily.  Maybe too easily.  I believe people when they tell me their version of their own story.  Doug jokes that I would make a terrible CIA agent because I would believe both sides of the story equally.  I am not a very good juror.

Doug and I built our marriage around trust.  We worked at it.  We don’t have any secrets between us.  At least none that I know about.  When Doug told me he was on his way home from work, I could set the clock to it.  When he shared a happening he had experienced, I could have confidence in its occurrence.   When we would go here or there together, I trusted that I was well taken care of in his company, and so were our children. Trust has been a big deal for me in our marriage, for us.

I have often wondered if Doug was in Wayne’s place on the rope course that day if Doug was holding the other end of the lifeline, would I have jumped? 

It’s not that I don’t trust Doug anymore; it’s just different.  I can’t trust him in the same way.  I still trust that he loves me and that his love towards me is genuine.  I still trust that he wants to do his best.  I still trust that his heart beats for his family.  I still trust that he wants to care for me and be there for me.  

It’s just that trust + dementia in everyday life = craziness.

Doug says he took the garbage out, but the garbage remains full.  He says he ate lunch, but his lunch is still in the refrigerator.  He attempts to fix the toilet, but it is not broken (until he starts fixing it). Doug believes his kids all live here in the same town as we do, but that is not true either.  Is Doug a liar?  Far from it!  He just lives some of his days in an altered reality. 

His days vacillate between being spot on.  Knowing truth from fiction.  Doing projects that are very helpful.  He is able to complete his sentences, recognize the date and time, and not repeat questions or comments over and over.  To slipping at all those things and more.  To missing details.  To saying things are what they are not.  To complaining about pain, I am not sure he feels.  To even neglecting self-care.

I wrestle with trust.  With knowing what is real in his world.  I know his world is real to him 100% of the time, but it is not the same as my world anymore. 

My CIA and sleuth skills are being refined daily.  I am begrudgingly learning to question and look deeper at “real.”   I am gaining daily courage to handle things as they are and as they are becoming.  That to me, more and more, feels like preparing to be brave enough to jump off the small little platform I’m standing on into what some days feels like thin air.

Sometimes, it feels like Doug and I are locking arms and taking on dementia a bit like a grand adventure.  We keep loving each other and discovering “real” daily (which really can be an adventure). And we continue to push out into the uncomfortable unknown place of trusting others. 

But, in the times when our arms don’t feel locked in this grand adventure, when we feel alone and separate in this test of trust and bravery, I have promised Doug that I will continue to share our story and carry hope. I will let others care for us and keep trusting in God’s grace, provisions, and security for a safe landing.

Karen