Anxiety

Once upon a time, about 27 years ago, in the spring, I was driving through town with a lot on my mind, nothing special really, just a lot going on.  I felt normal enough…  Then it happened.  I wasn’t prepared.  It had never happened to me before, at least not like this.  I knew life had my plate filled to overflowing but so what, that was nothing new or unusual.  Three young children, a job, a home, a busy husband, and overcommitted finances.

We’ve all been there a time or two, right?

The sun was shining, I was driving alone in the car (which was unusual, I guess, because I was most often a kid taxi), and suddenly… I had to pull over.  I couldn’t breathe.  My heart felt like it was beating out of my chest, like maybe I was having a heart attack.  My thoughts were racing, my hands were shaking, and I didn’t know what to do.  I was in trouble.

I took a couple of deep breaths and tried to relax.  Phones were not as prolific as now, so I did not have one with me.  I couldn’t call for help.  I tried to keep from panicking as I saw my life flash before my eyes.  Nothing seemed right.  Everything felt surreal, almost out of body-like.  I don’t know how long I sat in my car on the side of the road, but my breath eventually became even, my heart stopped racing, my tears dried up, and my hands steadied.  I drove home.

When I got home, I called my dad.  He was a physician and my trusted ally.  I told him what happened, and he asked me if I had a rash on my body.  I remember thinking that was an odd question, and I was stunned that he knew.  How did he know I had an angry hive-like rash all over my body?

“It was a panic attack,” Dad said.  He suggested I unload some stuff from my overfilled plate and rest more… Easier said than done.

The only other time I had a similar experience was years later following the words, “You have cancer.” After that shocking announcement, I walked out of the doctor’s office into the fresh, sunny air and lost it, totally lost it!  Couldn’t breathe, couldn’t control my erratic heartbeat, sobbed uncontrollably… You get it.  Enough said.

It’s surprising how much I am hearing about anxiety these days.  Everywhere I turn, it seems I see articles and social media posts and hear conversations about these very difficult days we are living in – These COVID days, with employment uncertainty, life relocation becoming a norm, online school still in the headlines, political dissension, health fears, Zoom meeting interruptions – These are stressful days!  Anxiety pierced days.  Even new puppies can be stressful and cause anxiety. Trust me, I have one!  People everywhere are feeling overwhelmed and fearful.

As long as I have known Doug, he has been my stable, chill, enduring comrade. Quick-witted and confident. Don’t misunderstand me, we have been married 38 years.  I have seen him mad before, sad, confused, frustrated, and overwhelmed, but I haven’t known him to be anxious or fearful.  In fact, Doug is famous for one-liners that hint at the way he does life.

The one-liner I most often repeat is, “More will be revealed.”  Patience and acceptance are all over that.  He is also known for saying, “Living the dream,” when someone asks him how he’s doing. “One-day-at-a-time” and “Keep it simple” describe how he travels through life and “This is not my home” and “God is in control”, basically sums up his spiritual convictions.

Sadly, his childhood was difficult.  Some stories he shares about his young years can bring a chill up my spine.  He told me, as a child, he was anxious.  I can imagine that to be true.  Even so, anxiousness is not a familiar behavior I attach to Doug.

Until recently.  Until FTD

Frontal Temporal Degeneration (FTD) is a dementia type that is often associated with behavior change.  I understand that the behavior variant of FTD can cause a person to become erratic, angry, and unpredictable.  Fortunately, that has not been our experience.  Doug’s behavior hasn’t changed much, at least not drastically or permanently. 

During Doug’s FTD diagnosis at Loma Linda University Neuropsychology Center, the testing was stressful, and the doctor used the word anxious to describe Doug’s behavior.  I was surprised.  I did not know Doug to be anxious, and his “anxiety” did not present like my experience with anxiety at all.  He didn’t have a full-blown dramatic panic attack where he couldn’t breathe and had heart palpitations and loud sobs amidst tears.  The anxiety that showed up in Doug during diagnosis was almost silent – he withdrew into himself.  Just stopped.  He stopped talking to me and relating to things around him.  He became apathetic and withdrawn, with bouts of nervous, fidgety, agitated energy.  He retreated, checked out, and paced.  It took about three days following this early FTD anxiety before he was back to his normal, relaxed, calm Doug. 

My reactions to this experience were scared, uncomfortable, and lonely.  I felt helpless.  I decided then, in all my puffed-up prowess, I would do all I could to try to control Doug’s environment enough to keep him out of those stressful experiences and thwart anxiety and the decline of dementia whenever possible…

Are you laughing yet at how powerful I thought I was?  You should be!

I used to try to solve and regulate dementia like a temperature control on a thermostat. I spent lots of hours reading and researching and hoping and wishing, with my guard up, that somehow, Doug was different and would not experience the unfriendly parts of this disease.   But alas, that is not the case.  I now realize we will not escape unscathed.  The dementia brain will do what the dementia brain will do, no matter how hard I work to control it. FTD brain change happens unpredictably and erratically.

We have been on this journey long enough to notice times of stability and decline.  But predicting those intervals is hopelessly hard, and preventing them is impossible.

Sadly, Doug is currently in decline, and anxiety has reared its head – quiet, internal, unsettling anxiety laced with nervous, fidgety energy.  While watching evening TV recently, he said to me, “I’m anxious.”  The announcement of his self-diagnosis was noteworthy.  Doug’s language is impaired, along with his awareness.  So, to plainly state how he was feeling gave me pause.  When I asked him a clarifying question to better understand how anxiety was affecting him, however, Doug answered with his typical muddled and confused messaging.

I let out a sigh.

Maybe I sighed because the answer was muddled and confusing, and I hoped for better.  But more likely, I sighed because anxiety in Doug reminds me that dementia doesn’t take a vacation.  It keeps pushing onward like an engine on a mission.

The truth is, I sigh and cry more often and more easily these days.  I am finally less intense about controlling the outcome (which is good for my overall well-being), and I am more connected with reality right now.  Meditatively, I frequently take deep breaths and concentrate on relaxing my shoulders, my forehead, and my jaw in a slow, intentional exhale as I say a prayer for Doug. For me. For us.

Even as dementia trudges on, this prayer practice helps remind me God is in control, I can trust Him, and more will be revealed as I keep it simple one day at a time.  

Karen