“I don’t know what happened.” Head bowed, my partner’s clenched fists move to cover his eyes, his shoulders slump.
From where I sit, relegated to the sidelines in the examination room, the doctor standing between us, I am unable to reach my partner, to distract with touch. “Honey,” I whisper hoping the endearment will pull his attention to me. His hands drop to his lap, our eyes meet. “Dr. R. told us we can’t get back what’s lost, but you’re doing everything possible to slow the loss and stay healthy and strong.”
He nods and his posture changes, shoulders back a little, chin lifted. “I am.”
“You are, and I am proud of how hard you work. You should be too.”
From the corner of my eye I notice the doctor slide the offending clock picture into the back of the paper file along with the results of the three word test, sit down on his rolling stool, and pick-up a small light. “Let me take a look at your ear,” he comments as he slides the stool to my partner’s left side. The discussion takes a meandering path to the appointment’s conclusion and ends on a positive note.
The clock and three word test is usually given in a primary care setting to determine if a patient is showing early signs of dementia. Three random words are spoken to the patient at the beginning. Then a paper with a circle in the middle is provided with instructions to complete the clock and place the hands at a particular time. When the patient completes the clock, he/she is asked to recall the three words. A result of 1 to 2 word recall with a complete clock including the time means no sign of dementia. Regardless of the number of words recalled, if the clock is incorrect or incomplete, the diagnosis is dementia.
My partner settles into the passenger seat for the ride home. As we pull onto the street he comments, “I don’t know what I was thinking with the clock. I had the twelve and six right and then wrote fifteen for the other numbers. What’s our schedule today?”
“Latte next, power exercise class with your favorite drill instructor, lunch, then your eye appointment.” A silent debate rages inside, do I respond to the clock comment or hope he’s lost interest in the idea and will let it go? As a family we’ve just survived two weeks of unremitting gloom and agonizing over past decisions. Finally, with the help of both his therapist and our daughter he’s walked out of the cloud. Looking for direction, when I stop at the light I glance at his hands where they rest in his lap. His fingers are fidgeting, small random movements. I reach across the seat and take his hand. “You probably just lost focus for a moment when drawing the clock.”
“Yes, you’re probably right.” His hands still. “Sometimes my thoughts wander.” He settles into the seat, shoulders back and hands quiet. “Overall it was good doctor report. I’m stronger. Other than drinking more water and eating less dessert my diet’s good.”
“And you’re working hard to maintain your balance and build muscle tone.” I change the subject, reminding him of his recent visit to the studio where our daughter is the executive producer of a digital show focusing on mental health. Accompanying his daughter to work played a large part in chasing away the cloud. Everyone was kind to him, no raised voices or angry words. These are people working together to create a project they believe in. They were both welcoming and kind.
Eventually I pull into the senior center for his class. Today I choose to wait inside in the library. While he works hard for the “drill instructor” I make a note to call the doctor before the next evaluation appointment. I plan to politely ask that the clock test be removed from his evaluation. I can see no point in a diagnostic tool for something we already know. One thing about conditions involving cognitive decline, while each is different they do not improve. Isn’t the first rule of medicine, do no harm?
“I wish there was a treasure hunt to find his buried memories“
“Let’s try your first smoothie concoction Dad!” says our daughter.
The prior twenty minutes she carefully explained and demonstrated how to use the smoothie blender, explaining in great detail multiple times the order for layering the ingredients.
The three of us are dancing the familiar ballet of multiple adults creating in a kitchen designed for a single chef. The scent of bacon cooking in the microwave overpowers every other smell as I put together a simple potato soup. My partner of more than thirty years is looking for two glasses to share a sample of his first smoothie with our daughter.
From my end of the galley, I watch him reach for the handle of the closest cupboard. Time pauses, there are no glasses in there, that cupboard houses the plates and bowls. The snick of the magnet catch on the cupboard door ends the pause. He grasps the nob of the next cupboard and carefully opens it. He’s on a hunt now. Cupboard number two contains wine glasses and an array of medicine bottles, the medications his body depends upon. Over his shoulder he glances at our daughter for reassurance. He closes door two carefully until the magnet latches. Very slowly he grasps the third door, the home of the treasure he seeks. The shelves where glasses and mugs have been stacked since the time she learned how to walk. He pulls out a single mug.
Our daughter takes the old mug from his hand and turns it over. “This one’s a little dusty, Dad.” She sets the mug in the sink and reaches into the cupboard retrieving two glasses. She pours a small amount of smoothie into each glass and hands him one. “What do you think?” she asks as he takes his first sip.
A smile lights his face. “It’s good. But I don’t need a smoothie now, I had one earlier and your mom’s making dinner.”
She grabs a plastic cup from the top shelf. “I’ll take it home with me. The smoothie will go well with the salad I’m having for dinner.” She pours the rest of his smoothie plus what is left in her glass into the plastic cup.
A frown mars his face. “Don’t you need a lid in the car? Won’t it spill?”
“It’s only half full. It should be okay,” she answers. “Now for the fun part, we clean up.” She gathers the pieces of the blender, starts rinsing them in hot water and stacking them on the drying rack. “We have to wash it by hand, Dad. No blender parts in the dishwasher.” She dries her hands, reaches for her father and gives him a hug. “I’ll see you tomorrow, early.”
I glance at her face and follow her to the front door. A silent tear is slipping down her cheek. I pull her into my arms for a hug. “Tough day, huh?”
“He couldn’t find the glasses. He forgot what he was looking for in the few minutes it took to open the cupboards,” she answers with concern in her eyes.
“It was scary. First time he’s forgotten what’s in the cupboards. He’s tired and the end of the day is never his best time. Tomorrow will be better.” I reassure her. I give her another hug; remind her I love her and appreciate everything she does. She climbs in the car and drives away.
In the kitchen I finish making soup and ladle it into bowls. He grabs forks from the drawer and I ask him to get spoons too.
He gazes into my eyes when we sit down. “Where’s the smoothie I made?” he asks.
“Your assistant smoothie maker took it home. You had a smoothie today and she doesn’t have someone at home making her dinner like you do.”
“Good. I don’t need another smoothie with my soup.” He smiles and a twinkle appears in his blue eyes. “It was a good one, though.”
For thirty years the same cupboards in our tiny kitchen have housed the same items, plates and bowls together, wine glasses in the next cupboard, glasses and mugs next. Tonight, the whereabouts of familiar objects escaped him. I noticed the other night he opens all the cupboards before he starts emptying the dishwasher. Now I know why. As the disease steals his memories he compensates; notes in his pockets and on the white board, opening all the cupboards before emptying the dishwasher. We’ve dropped from our vocabulary the phrase “Don’t you remember?” He doesn’t. When he runs into difficulty finding something, like the glasses, we rarely interfere in the hunt. Independence is a fragile thing when memories slip away.
When things go missing, I conduct a treasure hunt of my own. I am grateful for my tiny kitchen. There are limited possibilities, a few drawers and cupboards. Losing things is very unimportant and often easily solved. I wish there was a treasure hunt to find his buried memories. Each small loss of who he was is painful. We’ve learned there is no easy solution. All I can do is accompany him on the quest, support him and be grateful every day for our daughter who voluntarily sails the uncharted seas of time with us.
The hammer makes a satisfying whack when it slaps against the steele post. One more solid hit and it will be planted far enough into the soft earth. I glance over at the straight line of the fence I’ve assembled so far and see my partner’s hands figiting on the white rope I’m using as a guide to a straight line. I set the hammer aside and move beside him. “Are you feeling better?” I ask.
“Move this up,” he tussels with the knot. “It will give you a better line and be out of your way.” He tugs on the line which pulls up the stake at the other end and drops the rope to the ground. His hands drop. “I’m sorry I can’t help you,” he mumbles and bends at the waist as though in pain.
“No worries. You’re probably right I’ll attach both ends at the top,” I answer.
He shuffles back onto the flagstone sidewalk he built so many years ago. I watch his careful step onto the patio and then over the threshold into the house. Today’s a bad day.
I attach the rope at the top as he suggested and redo the other end. Now the rope looks straighter and is out of my way. He was right.
I duck my head and slip under the orange tree on my way back to the post I’m planting. Water drips from the tree’s thick canopy of leaves and slides down my back.
The all day rain left the ground soft, even the clay gave way. As I pushed the last section of fencing into the soggy earth, a wet branch breaks from above soaking my shirt. Warm water, summer rain in Arizona. The high today is 80 degrees. A far cry from the low hundreds more typical of September and a welcome relief from the record heat of a few weeks ago.
My face wet from the odd summer rain and tears, I glance at our orange tree with it’s bright green leaves, reminded of a the winter it wore a crown.
When my partner and I moved into the house it was our first experience owning a fruit tree. We were crazy about a plant that provided shade, flowers, and fruit depending upon the season. We were determined to give our lovely tree the very best care.
One Saturday morning we woke to an announcement in the newspaper – Unseasonable cold snap on the way. Cover you plants. – Did that mean little plants? Big plants? Did that include trees?
The article was vague and brief. (This was prior to the internet’s easy access to mountains of information.) We could assume the tree was not included since the article did not say “fruit trees” and do nothing. But what if we were wrong and something happened to our wonderful tree? Something we could have prevented?
We chose to take action. Sheets were commandeered from the linen closet, the ladder pulled from the garage and we went to work. How do you cover a tree that is almost 10 feet high with a canopy of 14 feet across? With laughter, ladders, and conflicting advice from a spouse and six year old daughter, the tree stands tall with it’s new armor for protection.
A picture of our work rests inside an old photo album. In the photo my husband and daughter stand beside the orange tree. Both humans wear giant smiles. The tree wears a pastel sheet as it’s crown.
Over time, we learned that a cold snap would not likely impact a tree as old and established as ours. Putting a sheet on top wasn’t necessary.
Today, while I finish the last piece of the garden fence and clean up the mess I made, my daughter is grown and away visiting a friend in another state and my partner is asleep. He has days of many naps and days of none. The disease that is trying to steal him from us can’t win as long as I hold on to the memories and the time the orange tree wore a sheet instead of a crown.
The scuff of slippers on bare floor woke me to an otherwise silent night. Backlit by the motion light, my partner’s shadow appeared on the threshold of the hallway. I slipped from beneath the sheet, triggering the light beside my bed, and joined him in the hall.
“Are you okay?” A meaningless question since he’d still be tucked in bed if he was okay.
Anxiety pours from him in waves and he turns toward my voice.
“Something’s leaking. I have to check.” He brushes past me and I follow him to the hall closet, flipping the hall light on as we pass. Yellow flashlight in hand he shuffles through the kitchen to the back door. I watch him unlock the dead bolt and wonder, “Should I add the alarms to the doors now? What if I’d been soundly sleeping and missed the scuffle of his slippers?”
In the quiet night we pass through the pool gate. He shines the trusty flashlight around, focusing on the various meters and the hose bib.
“Do you hear it?” he asks with genuine concern in his voice.
The neighbor’s air conditioning clicks on interrupting our search.
“I hear the a/c, what do you hear?”
He turns toward me, the light illuminating his face. “It sounds like the ocean, like waves. Something must be leaking.” His beautiful blue eyes are wide with intent.
“The bricks are dry and there is no odor of natural gas. If something’s leaking it’s not here.” I answer.
From experience I have no idea what he understands or doesn’t when caught up in his midnight world. To me, the seconds feel like hours. I slow my breaths to calm my heart, determined not to add my own anxiety to his as he stares into my eyes.
Not satisfied, he shuffles back through the gate and into the kitchen. My barefoot steps are silent as I follow him through the quiet house to the front door. He unlatches the dead bolts on the door and security door. I follow him, closing the doors behind us. Again, the thought of door chimes runs through my mind, but he’s moved to the end of the driveway and is staring up at the sky. The warmth of concrete on my bare feet reminds me it’s still high summer in the dessert and door chimes will wait another day.
“You don’t hear the noise.” This time a statement, not a question. He places both hands on his face perhaps to hide from his own confusion. The pose breaks my heart a bit more. His hands drop to his sides. “It must be me.”
I take his hand and tug gently, guiding him back toward the house. I’m purposeful in taking his hand but aware he may cringe from my touch. I never know what the right thing to do in these dementia moments. Does he need touching or hands off?
“Let’s go to bed.” I suggest. He agrees. Willing to give up the search.
There’s so much information about his disease on the internet, but I’ve found nothing about best practices for dealing with a hallucination.
He doesn’t shuffle back inside, he strolls and I’m briefly reminded of the confident, athletic man I married. The drugs he takes for mobility help, his arms swing naturally as he strides down the hall. So many drugs on his agenda now. We spend time one evening each week sorting them into little boxes marked by time of day and day of week. It’s even colored coded to help us both keep them straight.
When he’s snuggled in and drifted off to sleep, I return to my room and go back under the covers. I stare at the glow in the dark stars stuck to the ceiling. We put them up to comfort our daughter when she was young, now they comfort me. Two years ago, my partner was diagnosed with parkinsonism and Lewy body dementia. The midnight adventure was not his first hallucination. They arrive without warning and so far, all are associated with him going to sleep at night. The common theme of his hallucinations is protecting our home, our family from a threat, a role he’s acted out in truth for the last thirty-five years. He laid each and every brick of our house. The castle he built for us from the ground up.
Morning arrives and I find him seated at the breakfast bar, newspaper spread before him. He’s searching for sports on TV, classic movies, and any news that might impact us. We have our routine conversation about what’s on TV and interesting articles in the paper. When I’ve filled the coffee pot with water and pressed the brew button, he asks,
“What happened last night? I know something did but I don’t know what.”
I explain our midnight adventure. I remind him lately our old house has broken down several times in the last few months so a leak wasn’t impossible. We didn’t find one.
He seems satisfied with the explanation and says, “I heard a noise but you didn’t. I must have been dreaming.”
A dream of a midnight adventure we shared he can’t quite remember.
The hammer makes a satisfying whack when it slaps against the steele post. One more solid hit and it will be planted far enough into the soft earth. I glance over at the straight line of the fence I’ve assembled so far and see my partner’s hands figiting on the white rope I’m using as a guide to a straight line. I set the hammer aside and move beside him. “Are you feeling better?” I ask.