Two people holding hands

Oh, that smile…

Editor’s Note: This article was originally published in the Fall/Winter 2019 edition of Compass & Clock Magazine. We are publishing it now in honor of National Family Caregiver’s Month. 

By: Madeleine Fraley

He was an amazing man who carried himself with tall and quiet dignity. Quickly, he would offer a gentle smile. He was smart, talented, energetic, passionate and loving. With a twinkle in his eye, he had a passion to keep on living all the wonderful things life had to offer. My beloved husband of over 53 years, Larry, succumbed to a virulent disease – dementia. There was a thief that came in the night to steal the uniqueness that made him so special. No one could see, catch, or stop that thief. Each day there was loss, something was missing, we had been robbed.

My mantra became “blame the disease.” It was the disease that was disrupting our lives. Oh yes, it lived in my loved one’s body, but it was the malicious entity producing the havoc. The chaos in our lives was not Larry’s fault. His face was a mask covering that insidious disease.

During our journey there was always something new around the bend. I couldn’t see around those twists and turns, but there seemed to be an unexpected surprise when we went around those strange and unfamiliar corners. For some reason it seemed like I was always playing “catch-up.” The disease seemed to be one step ahead of me. As it progressed, I continually needed to “fix” things, so Larry would be safe. 

Larry would pace constantly, circling the dining room table – sometimes to the point of exhaustion, sweating and breathlessness. I would try to intervene with a gentle hug and sometimes he would stop and give me that endearing smile. Other times he would shove me aside and keep going. 

Sitting on the rolling office chair he scooted around, room-to-room, rumbling through the house. The clunk-clunk sound of the wheels crossing the grout lines of the tile floor was a give-away that he was coming. There he was sitting on the chair and using his feet to propel forward.

He was my furniture mover. He seemed to enjoy transporting dining room chairs here and there. Occasionally the kitchen island was adorned with one perched up high as if it was a lookout. He even put them outside. I had to count the chairs periodically because if one was absent, I needed to hunt it down for it might be out in the rain! 

Perpetual motion. He wanted to go, go, go.

I had to put alarms on all exterior doors, so I knew when a door was opened. When I heard the alarm, I would rush to see where he was going. How many times did I rush away from the toilet or out of the shower when I heard that alarm! Abruptly rushing from the shower: wet, dripping, towel wrapped around my naked body, I would search for Larry. One time I careened around the corner of the hallway with my trusty towel to find my brother and sister-in-law standing in the entry. They wanted to surprise me. Surprised I was! Maybe surprising a caregiver should be outlawed. You never know what might be behind the door.

Amusingly, Larry tried to put on my clothes. (Larry was 6’2’’ and I am almost 5’4”.) Clean laundry piles seemed to intrigue him. I found him trying to pull my dress over his broad shoulders with his head stuck inside the garment. One time, he put on my taper-legged jeans and pulled them up as far as they would go – just above his knees. There he was waddling around the house holding those pants up.  

So often the day didn’t turn out the way I had planned or hoped, but I needed to realize there was wonder in the day. Providing Larry with an experience that would bring that gentle smile to his lips or a twinkle in his eye was so important. That smile certainly lightened the emotional burdens of being a caregiver. 

From my journal – “As the lightning flashes and the thunder rumbles, I wrap my arms around Larry and glory in the awesomeness of what is all around us, saying a prayer of thanks. Over and over, together, we watch for the lightning flash and then seconds later listen to the reverberation of the thunder echoing through the clouds. For a few moments we are connected by the storm’s magic.” 

It would have been a mistake to miss that marvelous time. Looking back over the day and finding that tidbit of joy filled my heart with thankfulness. 

Each night was an opportunity to lovingly tuck Larry into bed. It was such a tender time. He did not know me, but he knew I loved him. I would straighten his pillow and pull the covers up, gently tucking them under his chin. Giving him a kiss and saying, “I love you” brought out that beautiful, gentle smile. 

Kneeling at his bedside I prayed, 

“Now I lay me down to sleep,

I pray the Lord my soul to keep. 

If I should die before I wake, 

I pray the Lord my soul to take.” 

Joseph Addison – 1711

One more kiss. 

One more, “I love you, honey!” 

Then I turned the lights off and sat in the dark room and read my book under the illumination of a flashlight. Eventually his breathing became relaxed and rhythmic. 

He was asleep – without torment – at peace.

Today, treasured memories fill my heart. There are many joys to be remembered but let me conclude with this: despite being in the late stages of dementia we continued to dance, holding each other tenderly and lovingly. There it was – that shy, gentle smile. When our final song was played, he had saved his last dance for me. 

How fortunate I was to have loved someone so special!

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