I have always loved the Christmas holiday. 

As a child, there was believing in Santa Claus, the reindeer hoof beats on the roof (I still swear it happened), and the year we got a sled and a toboggan under the tree.

As a young adult, there was tension between what I liked about my childhood family traditions and what I wanted to skip or redo and the internal pressure I put on myself to be home on Christmas. 

As a young married person, there was the first Christmas tree, the first ornament, and the blending of two very different family traditions. 

As a new mom, There was the challenge of traveling, especially when sharing the grandbabies between grandparents who lived far away. There was the fear that my baby might choke on a Christmas tree ornament and there was the start of the Christmas morning cinnamon roll tradition.

As a mom of tweens, there was the gift chart, so no one had more gifts under the tree than another, there were family traditions that had become non-negotiable, and there was the hope that the Christmas bonus would be enough to cover the cost of Christmas dinner.

As a mom of young adults, there was the heartache of the empty nest, the work to gather and make it memorable, and the very true fact that Christmas presents had become more expensive.

As a grandma, there is a deep understanding that Christmas cheer is about the children, their smiles, and their new Christmas morning PJs. Of course, there is also baking Christmas cookies to share with the neighbors and watching Hallmark Christmas movies before Thanksgiving to get into the holiday spirit early. Being a grandma also means buying gifts all year round, saving them on the top shelf in the bedroom closet for December 25th, giving homemade gifts that can become keepsakes, and celebrating the season with Jesus at the center.

As a caregiver of progressing FTD, Christmas time has become complicated, especially for me – wanting, wishing, watching, and struggling with staying one day at a time.  Actually, I wasn’t sure I could write about it… Being honest about feelings as reliable as an old, rickety, wobbly suspended jungle bridge is hard. 

So far this Christmas season, I have baked cookies, made gifts, wrapped presents, and smiled at strangers (under my mask) in the grocery store. But on the inside, even while humming along to Frank Sinatra’s Christmas songs, I hurt. The grief of longing for Christmas’ gone by waves over me – the fragrance of memories shared and the absence of the physical help, often required to adorn Christmas spirit (and a tree), has left me unfairly lopsided. Doug is physically in attendance but quietly disconnected. I am deeply missing how we used to share this season, how we transitioned from Pumpkins and Scarecrows to lights and Nativities together.  

This year, responsibilities have been added to the common festivity preparations. Responsibilities like preparing and serving lots of healthy, calorie-dense meals and yummy sweet treats to add weight to Doug’s thinning frame and working in doctor visits for his new random health concerns. There is implementing and helping with consistent showering and daily (sometimes hourly, or even by the minute, depending on where we are or what we are doing) checking in with Doug to temper any anxiety or offset any apathy that may be vying for attention. There are also restless nights, feeling out of balance, checking in with myself for a bit of self-care, and so much more. I think you get the picture. 

In the past, Doug’s contribution to this favorite time of year overflowed with his flair for music, creativity, and overall merriment. He loved Rudolph and Santa, Starbucks and Costco, presents, and planning for the year ahead. Mostly, he loved the Nativity, the Christmas story, and the gathering of his family. But this year, while still physically present – occasionally whistling to a favorite Christmas carol, eating a Christmas cookie or two or three, and sometimes taking a cleansing breath while looking at the sparkle of lights and decorations – he is sadly missing. His enthusiasm is absent. His desire is vague. His sparkle is dim. My heart is heavy. 

More than any other, this year has felt hard and sad and lonely and festive and breakable.

I realize the holiday times are difficult for many people, especially this year after enduring so much loss and community fracturing because of COVID and the craziness of our national welfare. But somehow, I was caught off guard by the holiday blues I have experienced. 

There were beautiful, even sweet, moments woven into this holiday. It wasn’t all hard. We even laughed quite often, actually. But I realized that advancing into this new year will look different than many of my younger dreams and grander hopes had imagined. And at the same time, I recognize the call within, urging me to regroup and reassess. It’s funny how expectations can be both invigorating and disappointing. I am learning that a perspective fraught with unrealistic expectations often leaves me exhausted and haunted by disappointment. 

I have always been that person who plans next year during the week between Christmas and New Year’s. Typically, I get out the whiteboard, lined paper, and colored pens.   I write goals and objectives on 3×5 cards that I glance at throughout the year to keep me on track. I have not done much of that this year. I tremble to think about what 2022 will bring.  

However, I have decided what I will do in honor of the upcoming year and as a way to say goodbye to this last year.  I will focus on today.  I will make it the best day I (we) have. Not in the denial, disowning sort of way where refusal of reality takes center stage. But in the becoming pleasing way a flower blooms a little more each day, making the time it shares with us that much more beautiful and graceful. 

The seesaw of dementia continually remembers and reminds us that “Today is our very best day.”

So, to you and the world, while balancing my wobbly jungle bridge feelings and managing the intermittent collision of grief and brokenness, I pledge to be as present, honest, and loving as possible today and this year ahead, not worrying too much about the future. But instead, laugh a little more often and share in the beauty and grace of the moment, one day at a time.

Yes, I put this on a 3×5 card.

Karen

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

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

Those of you who know me know I am extroverted, and I like to talk. My primary school teachers and the principal knew that fact without question. So did my high school swim coach, my best friends, and my dad. Words are, and always have been, my engine. They fuel me. They guide and direct like a compass. My career choices have leaned heavily on language – writing, public speaking, lecturing, instructing, one-on-one dialogue. I even have a master’s degree in communication and leadership!

So, words are my thing.

Some people would say music is their thing, or painting is their thing, or technology, astrology or economics, or dance is their thing. This thing is the thing that helps make your world go around. It communicates to you and through you. It has probably been your thing since day go. I like to talk and listen and dialogue back and forth. I also like to read and write (hence this blog) and expand my vocabulary. Words give me the leverage I need to solve a problem or direct the traffic of my life. 

The use of words can calm me down, like when I read a bedtime story to my grandkids or listen to meditation with headphones, or they can energize me like when I meet a friend for tea and have more to say than I have time.

Doug found pleasure in teasing me about needing to “use up my words”. When the children were young and I spent more hours serving small toddlers than I did interacting with the world, Doug would come home from work and be barraged by my daily unspoken – turned verbal – thoughts. He heard everything from what the kids did throughout the day to my opinion about world events. Doug learned very early in our relationship that it was easier to nod and give an occasional “uh-huh” now and then as I spewed the plethora of my thoughts than to have any opinion at all about any of my musings. His listening and my talking fortified me.

Doug’s opinions came later. 

He let me talk and talk and talk, and then, when the timing was right (which was often on a different day), he would revisit my words, remind me about what I said, and then give his opinion. I valued his opinions (most of the time). 

Doug would think and then speak. He was often funny, sometimes right, sometimes wrong, and commonly gentle in his interpretation of my oration. I came to appreciate his usually well-thought-out delayed feedback and conversation.

The track star, Jesse Owens, says, “If we walk long enough and talk long enough, we might come to understand one another.” I just love this quote and believe it wholeheartedly.

Doug and I used to walk the river trail. It was a beautiful long nature trail with stunning river and canyon views behind our house, where we raised our kids to be adults. The two of us would walk together and talk together and come to understand each other on this trail. We talked about everything we cared about. We discussed whatever was top of mind at the time and whatever needed to be considered. We laughed sometimes, and we cried sometimes. We decided things on those walks. Basic things like which toys went under the Christmas tree. Things that mattered more, like the best college for our graduating senior. Even the really tough things like the optimal time to sell our memory-filled family home. On that river trail, I learned, I talked, I listened, I trusted, I ached, I argued, and I grew up. Those walks and talks are now some of my most precious marriage memories. Sigh.

Dementia, more specifically Frontotemporal Dementia, more specifically still Primary Progressive Aphasia, is chipping away at Doug’s language faculties. His ability to follow and understand language, formulate words, ideas, and opinions, and his ability to express, using the limited language skill he still retains, is steadily becoming silenced. He spends much of his day quiet.

Of course, I still use up my words on his ears. It’s my thing after all. But more importantly, it is my one-dimensional way to attempt connection; to try to coax him out of his silence. My daily discourse is my genuine attempt at igniting hope; just maybe, his gaze will meet mine, and his opinion will be expressed boldly and without reservation, with no confusing words, mixed-up sentences, and halting patterns, or single-word speeches. Sadly, however, the once-upon-a-time exchange I well remember and hope for, the two-way conversation and dialogue I covet, has not happened in a long time.  

Doug and I go to Speech Therapy together. His speech therapist is good at drawing words out of him and making me quiet. She is patient and tricky. With her guidance, I am developing a notebook of words, pictures of family, places, objects, and lots of stuff that will perhaps stir recollection and unite sentences. I also use a whiteboard with erasable markers to jot down words. I ask him, “Would you like tuna or ham or veggies?” I write Tuna, Ham, and Veggies on the whiteboard. Seeing the words makes it easier for him to pick. It’s harder for me, more work, I mean. It’s easier to just give him something to eat. Being a good sport can be tiring for both of us.

I wonder what he is thinking; what he comprehends, if I talk too fast or say too many words to follow, if he wants to say something but can’t find words or finds it too cumbersome to try. The whiteboard slows me down and gives him word choices. It helps.

Undesired silence is deafening in its volume, decapitating choice. When I am craving Doug’s unique opinion – lying down next to him at bedtime, where we used to dissect the day together, or deciding on something alone, I wish he was deciding on with me or for me – the stifling clutch of silence booms and often lingers. 

Sometimes, to break the domineering silence, I turn on music, usually quiet in the background of my day. It breaks up the monotony of my thoughts and occasionally detonates Doug’s voice in song. He may sing a lick or two with little or no language deficit if the song is familiar. He has always sung beautifully. But now, hearing his voice – the tone, the unique edge of his sound – can sometimes startle me with uninvited watery eyes and a lump in my throat.  

Doug rarely appears frustrated in his silence. If I were him and had to manage all the word chaos, I assume he is navigating in his head every time he goes to say something, I would be very frustrated. It is almost as if he doesn’t recognize silence is happening. Sometimes, he participates in surface three or four-word chit-chat, usually initiated by someone else, and sometimes, he speaks sentences that have a point, albeit elusive. When I listen as he wrangles with sentences, trying to nail down a point, I get exhausted in my efforts to follow along, like how I imagine herding cats would make me feel.  

Little children like short sentences and chit-chat too. Our granddaughter mimics her mom with phone-like chit-chat and voice fluctuations that adults use when talking to friends. It is very cute.  Doug identifies with her language. He has short, sweet conversations with her using her size words. Doug also talks with an adult friend on the phone. They laugh. Bruce (his phone friend who used to be his in-person friend, but then we moved 1100 miles away) understands short, sweet, uncomplicated, dementia pacing (if that’s a thing) chit-chat. Doug smiles and feels successful after tele-talks with Bruce. I smile too. Thank you, Bruce.

Mostly, though, Doug is just peacefully quiet. His peacefulness is the beautiful hidden blessing in the brutality of his dementia. We are lucky for that.  

I am also lucky God is a good listener. He often endures my word outpourings, equal in volume to the summer monsoon rains of Arizona. I think he can handle it. God clearly understands how words are my thing. He made me that way. Graciously, he never interrupts, never chastens me for my many verbal protests about how it is hard and how I wish things were different as I bemoan the slow-motion tragedy of dementia unfolding before me, and he never tells me to quiet down or sends me to the principal’s office. Instead, he brings balance; he gives me courage fresh every morning, unconditional love, and the patience required to be a good sport. God knows I need that. God knows Doug needs that.

And deeply, I am grateful for that every day, one day at a time.

Karen

Identity is a big thing – who you are, who you think you are, who others think you are – all make up a piece of you. 

Some of my earliest memories are wrapped up in who my parents were molding me to be.  Many of my middle school memories are consumed with who my friends thought I should be.  Some high school memories are obscured by who my coaches wanted me to be. My young adult (early marriage) memories include how Doug helped me become who I would be.

One of the harder parts of my cancer journey was losing my hair due to chemo treatments.  I don’t know how it is for you exactly, but for me and many people I have collaborated with on the topic of hair loss, the general consensus is that hairstyle helps you identify who you are and who you want others to think you are. For example, I bet seeing a man sporting a man bun brings up different feelings for you than seeing a man with short hair and sideburns or seeing a man with long dreadlocks or a man wearing a toupee.  They all bring up different feelings in me.  I identify with all of those images differently.

Being cancer-bald for a little while did not exactly assist in building my confidence.  In fact, it echoed the fact that I was sick.  I did not like that at all! I definitely did not want that to become my new identity. 

As a child, my mom liked my hair short.  I did not like it short.  I wanted it long like Marsha Brady’s on the Brady Bunch.  As soon as I was “old enough,” I grew it long.  It never looked much like Marsha Brady’s long, straight, and controlled style.  Mine was curly, longish, and wild.   I liked to primp it, clip it, braid it, and spend way too much time on it in front of the mirror.  In a superficial, intimate way, my hair helps me create me.

More than hairstyle, however, there is also identity in our individuality by what we do or how we see ourselves, what we have achieved, or even by what we have failed to achieve.  It is usually expressed in the form of a label.  Like, I am a middle school student, or I am an athlete, a CEO, a painter, a husband, a caregiver, a mom, a Navy officer, a dyslexic dog-loving gang member…  Sometimes, identity is even established by what has been done to us. Like, I am the child of an alcoholic, or I am divorced, or I am the youngest of 8, or I am old.  You get the point.

I am no expert on the subject of identity.  People have Ph.D.’s in this field!  I only have my life experience as I see it through the lens of my individuality and one college psychology class in which I got a C. There is one thing I know for sure about this topic: I have cared deeply about being identified as Doug’s wife and the mother of our kids.  I have worn that label proudly.

Unfortunately (or fortunately, depending on how you look at it), dementia is not at all concerned about identity.  It flips the importance of clarifying uniqueness on its head.  Doug used to be an impeccable dresser, for instance.  He steam ironed in detail.  He cared about the seam on the sleeve of his pressed shirt.  His identity cared.  Sometimes, he wore wrinkled jeans and a sweatshirt, but his distinctiveness mattered to him when he cleaned up on purpose.  Dementia just doesn’t care that much.  Sadly, without intervention, Doug might now wear a shirt inside out and backward without concern of dishevelment.

Dementia’s disregard for identity also affects relationships.  It is tough watching Doug struggle with the names of our grandkids.  We have 8!  They are each unique and beautiful in their own way.  Doug gets a hollow look in his eyes as he struggles to match names and faces, and he glances over at me with that panicked “bail me out of this, please” look.  I think names have a lot to do with identity, too.  But that’s definitely a topic beyond my scope of knowledge, even with Google at my fingertips. 

Doug knows a lot of people. He knows a lot of people by name.   He has a lot of friends.  He has always cared deeply about friendships and for the people he has called friends and who call him friends.  Doug could tell you where they met, why they became friends, where they have been or traveled together, and the significance of the friendship.

Doug and I have been friends since the first time we met.   That does not mean it was love at first sight (although I admit he caught my eye) or that we have always agreed about everything, but we have always been friends.  He has known me better at times than I have known myself.

Until recently.

Recently, Doug asked me if we were married.  I thought he was kidding and nearly dismissed it with some flippant, sarcastic remark until I looked into his eyes.  His eyes showed honest, empty confusion.  My heart sank.  He also expressed confusion about parenting our children together.  He asked what my holiday traditions were when raising MY children.  Again, I looked at him to see if he was serious. Sadly, he was. When I shared a holiday tradition that WE (he included) enjoyed, he looked at me with that same hollow gaze I am beginning to recognize as the “I’m not quite sure” look. 

When these empty dementia cavities occur, my heart sinks. I know it means further progression into the disease.  It means more to come.  And then, because I really don’t know how to feel about these advancements, I become blankly sad and institutionally practical.  I sweep the floor, clean out the gutters, or knit. The man who has helped me identify me is woefully losing touch with me, with us.

This was never as unmistakable as the recent time dementia interrupted, and identity was utterly abandoned. 

Doug and I sat peacefully at the table, building a 300-piece European streetscape puzzle together.  He started his dialogue with, “I have something I need to tell you…” I thought, “Okay, where could this possibly go? His language is impaired, so I may need patience and help fill in the blanks.” He started telling me a familiar story about his (our) dementia journey. I have heard him tell (and I have told) many times.  He told it like it was the first time I had heard it. No big deal, he has dementia after all. I knew I needed to be patient, which isn’t always easy, and let him tell it again.  

He came to the part where I entered the story.  This is when it got dicey.  He told me about the happenings as if I were an outsider in the account when I was a key player in the plot.  He referred to me in the third person.  He said things like, “then Karen said… Karen was there, and she… I told Karen…”  He told me the story like I was a stranger newly acquainted with his dementia.

A knot formed in the pit of my stomach.  I felt my pulse quicken.    I wanted to interrupt and say something mean like… “What are you talking about? I’m Karen! I was there!” I wanted to run away.  But I also wanted to see where this was going. So, with the knot tightening in my gut, I silently dusted off my courage, and I sat like a statue with a “Chateau” sign puzzle piece between my sweaty thumb and forefinger.  I reminded myself to breathe.  I listened as he struggled with the words, the concepts, and the memories. It was laborious. I could not bring myself to help him.  I was undone. 

Doug finally concluded, “So I just thought you should know that.” I looked at him and wanted to correct him and set him straight with all the who’s who, but instead, I wrapped courage around me tighter and awkwardly uttered, “You were lucky Karen was there.” He said, “Yes, I was.”

I was frozen.  My identity as Doug’s wife, as his friend, and as Karen, just plain ‘ol me, was absent.  I was at the puzzle table in my house with my husband, and at that moment, I was a stranger. I was unknown. Nameless.  Lonely.

I put the “Chateau” puzzle piece down and said, “Thank you for sharing that with me,” as I pushed the chair back and dismissed myself to the kitchen.  Reality felt slippery under my feet.  I took a deep breath and exhaled slowly with the realization that, tragically, more of this is to come. 

Dementia is a robber of knowing.  It chips away at existence like a miner’s pickaxe; slowly, methodically, constantly, and entirely.  Being on this journey is often called “The Long Goodbye.”  I am not ready. I don’t feel ready for the progression that is coming.  I am not ready to be forgotten.  I am not ready for…  any of it.  I am definitely not ready for goodbye.

In short order, Doug was back to being Doug, and I was back to being Karen. Things are back to “normal,” as I write this.  I’m recognized, known, depended on, and nervous and sad, and honestly, kind of mad. I count the good days as blessings.  I am praying and asking for these good days to continue.  I’m not asking for much, really.  Just one day at a time until I am braver, more capable, sturdier, more willing, and ready.

Karen

Has this happened to you?

You’re walking through the grocery store, and an “old favorite” song sings over the store’s sound system.  Bam! There you are, instantly catapulted back in time.  You know where you were, who you were with, and what you felt like when you first loved that song.  The experience is so mesmerizing that you start singing the lyrics and rocking to the beat in the center of the frozen food aisle.

I totally get it!  That happens to me more often than I should probably admit.

I took piano lessons from my preschool teacher.  I’m pretty sure I was not in preschool when I took the lessons, but I was young.  Mom signed me up for piano lessons with Mrs. Beck to keep me out of trouble.  Preschool classes were held downstairs in the room with the big chalkboard on the wall.  Piano lessons were upstairs in the formal living room with white carpet and a grand piano.

Mrs. Beck was always old. She had white salon-styled short hair.  Grown kids.  No dog.  She made popcorn balls for the trick-or-treaters on Halloween.  I trick or treated at Mrs. Becks house every year. 

When teaching piano, she sat on the piano bench real close.  Close enough that I could feel her shoulder against mine and smell her old lady breath when she counted out the beats. Mrs. Beck had a passion for teaching music.  It was mostly lost on me.

I took violin lessons long enough to make the violin sing, not squeak, but not long enough to learn vibrato on the strings. As hard as I tried and as much as I practiced (which wasn’t much), I never made it past the third chair. I decided it just wasn’t for me.

Then, I took flute lessons from my friend’s mom.  I was finally committed to an instrument I was going to stick with (until I found the saxophone).  I even learned to play the Piccolo, sort of. I played in the high school marching band. My commitment, though, was shallow.  The practice took too much time and was… hard.  I didn’t love it.  I chose friends instead.

There was also the guitar, the recorder, the drums sort of (as much as possible without an internal feel for the beat), and, of course, singing.  I wanted to be a good singer but…

Then I met Doug.  Music was in him.  He felt it.  He knew it.  He heard it and loved it and sang it. He could really sing.  Choir was his thing.  Doug knew all the best songs.  He had all the latest equipment -the coolest receivers and turntables and tape decks – He had it all. Music rocked in his house. He loved classical and jazz, current pop, old pop, and even Gregorian Chanting.  Christmas music started BEFORE Thanksgiving.  His dad sang like Frank Sinatra, and his sister majored in music in college.

Doug brought the love of music to me and to our kids.

Music transcends time.  It arouses the future and provides a direct link to the past.  It is embedded in the fabric of human culture and identity and elicits untold emotions and memories.

Music plus dementia is fascinating.  There has been lots of research on the topic.  But for me, music plus dementia is a lifeline and a tool. 

Doug and I recently moved.  The move required a 15-hour road trip.  For many reasons, I wanted to make the trip in one day (COVID and dementia at the top of the list).  Doug’s sister Lisa (the one who majored in music in college) came and helped with the drive, with the mood, and with the fun. She made the long one-day drive a reality.

We set out on our journey at 5:30am.  By the time we were 13 hours in, we were tired, and it was dark. The GPS said a little more than two hours were looming before us.  I was in the driver’s seat. Doug was in the front passenger seat, and Lisa sat behind me.

Doug had faired the trip well thus far. You never know how traveling with dementia is going to go.  It could go either way.  Dementia could misbehave and cause anxiety, agitation, and all manner of ick. Or dementia could behave and bless you with tolerance, calm, and patience.  We were lucky so far.  Doug had done better on this trip than I expected he would.  But at this point in the drive, our luck felt like it might be changing.  Doug was getting squirrelly.  He shifted left and then shifted right.  His words were few.  His head bobbed in drowsiness until his neck snapped him back to attention.  He was weary and a bit agitated.   Truth is, we all were.

Lisa and music are almost the same word.

She was the master of ceremonies throughout the trip.  Lisa made sure music sang in the background most of the time.   But at this point in the journey, when we were all ready for it to be over, Lisa and music became front and center.  She magically and intentionally connected time and place with songs. Lisa played songs from childhood and matched them to the house with the blue shag carpet.  She played songs from high school days and matched them with neighborhood shenanigans.  She played songs their dad loved to sing, and she played songs Doug used to blast on his sound system.

Doug instantly came alive.  The mood in the car flipped.  Doug laughed and sang.  He became verbal and talked.  We danced (as much as you can when sitting in a car) and we remembered.  Names that hadn’t been spoken in decades came to life.  Details awoke.  The two-plus remaining hours on the road vanished in no time at all, and dementia never misbehaved.

As we arrived at our destination some 15-plus hours later, Doug said, “That was the best day ever!” 

In our house, there is always a melody playing.   Right now, it’s all about Christmas carols in every genre.  By January, I will be very ready to put the Christmas carols to rest and trade them out for a new song.  But I am sure Doug will still hum the carols and whistle them all the way into July.

In my early life, music lessons weren’t exactly my thing.  But now, music is my everything.  It has become my lifeline and tool that effortlessly creates peace, grace, voice, and remembering.

I am grateful.

Karen

P.S. “Have yourself a merry little Christmas…”