Nevertheless Dementia, We Persist

Short Story 3005 words

Perhaps some instinct warned me to glance at Lynne as she and I chatted in a pleasant conversation in the sunroom of my sister, Jane. Three easy chairs, two tables and a TV dominated the cozy space, except for a small spot in which Zoe, Jane’s cat, sat on her haunches with her eyes and ears focused on the TV. Lynne, my 54-year-old daughter and I had flown from Seattle to Denver the day before to visit her favorite Aunt Jane and Lynne’s cousins. Lynne had been excited about the trip even though she’d been frightened on other trips and haunted by one she regrets. She was too afraid to fly to Broadway in New York City for five days and four nights with her sister to see Bruce Springsteen On Broadway. I bought sweatshirts for us, but every time she sees me wear it, she regrets not going. I don’t wear mine around her anymore. When I proposed the trip to see Aunt Jane, she said, “Yes, I can do two nights and three days.”

We were relaxing on the second day after a smooth flight and a day of fun. At the Pixar Studios exhibit in the Denver Museum of Nature and Science we learned how to animate mammoth beasts in the movie Frozen and simulate bouncy locks of flaming red hair on fearless heroines on horseback. Lynne and her cousin Catherine built robots with magnetized metal parts, although Lynne said hers didn’t work right. It looked right to me. We watched the movie Turtles in the massive IMAX theater. We were immersed in surround sounds and sights of crashing waves on a Pacific Ocean beach amid cries of pelicans snatching tiny newborn turtles struggling across hilly sand to reach the ocean. We cheered on one turtle swimming or floating on kelp on her five-year journey across the Pacific, only to incredibly return to her original beach to exhaustively bury 100 of her own eggs. We headed home to Jane’s to rest and prepare dinner for the rest of the family. Which should explain why I was startled to see tears brimming onto Lynne’s cheeks, her jaw slack from holding back sobs, her face turned away from us.
“Lynne, what’s wrong?”
“I’m mad. You didn’t tell me I’d miss CrossFit.”
I remember thinking, What? I did tell her. Why did CrossFit suddenly make her sad? And why was she mad at me?
I wasn’t surprised she was sad about missing CrossFit. She obsesses about CrossFit and is afraid to miss it. Last year Lynne, my wife, Karen, and I unanimously enrolled her in the CrossFit’s Women Strength in a gym one block from her assisted living apartment. We liked the trainer and the program, but not the gym. It’s stuffed into an old one-story storefront. The living-room sized gym has mats on the floor, barbells, weights, dumbbells, poles for pullups and a clock with just minutes but no hours. Clothing was stuffed in small storage boxes because there are no lockers, showers, or equipment for circuit training, walking, running and pedaling. Funky, safe, economical and convenient, this program creates a passionate loyalty from Lynne.
She exercises on Mondays, Wednesdays and Fridays. On workout days she sits on a bench by the concierge for an hour before she is picked up by a friend who walks with her to their workout. She reports each CrossFit was great. She’s stronger, leaner and healthier.
We’re thrilled she loves it. But every day she hopes it’s CrossFit day, only to be repeatedly disappointed because most days it is not. On the afternoons after she goes, she frequently worries she missed it. Or, she’s mad because she decides staff forgot about it. Fortunately, she cheers up when we say she didn’t miss it. Frankly, I can’t believe the hold it has on her.
No matter, she was sad and mad. At me. I assured her I was sad she was sad and tried to assure her I told her. Jane comforted her that it’s OK to let tears flow when you’re sad. We didn’t cheer her up.
“You didn’t tell me.” From there she settled into her miraculous reservoir of resolve to shrug off despair. She gets distracted easily, like when Zoe swats at the TV if some movement on the screen disturbs her. Soon Lynne’s sadness and madness dissolved, apparently forgotten.
I’d been warned when Lynne and Catherine arrived at Jane’s after sleeping overnight at Catherine’s home. We requested Catherine care for her overnight, not only because Lynne loves her dearly, but because she’s a fulltime registered nurse in the ICU unit at Denver Health, a Level 1 Trauma Center. Catherine had proudly toured us through her remodeled basement where Lynne would sleep next to a bathroom and Catherine would sleep on a sofa close by. Lynne needed close supervision because on a trip to her sister’s home in Chico, she became anxious. She woke up several times, unable to find the bathroom and return to her bedroom. Lynne’s sister lost two nights of sleep. The next visit was successful because the assisted living facility gave us medications for a good night’s sleep and convinced her she could travel two nights and three days.
Lynne went to sleep quickly, and Catherine added loving comfort by climbing into her bed to comfort her when she first woke up in the middle of the night. It was obvious they slept well by the way they burst through Jane’s front door. Catherine announced, “Uncle Jim, you forgot to tell Lynne she’d miss CrossFit, so you have to buy her a new Starbucks cup.”
That was the warning I dismissed. I might have meekly protested, but Lynne had an irresistible ally and they were overflowing with laughter and certainty in a strong friendship, smothering my impulse to clear up that insignificant misunderstanding. Besides, I liked their clever penalty.
Seizing on a Starbuck’s cup to soothe my injustice toward Lynne was understandable given her history with Starbuck’s cups. She’s had as many as five cluttering up her small apartment until staff gave her a large coffee cup with a message to not worry and be happy. She looks for it every morning. When she leaves it somewhere, staff returns it to the concierge or fills it up when she comes down for breakfast. However, that morning she woke up in Catherine’s strange basement, decided she’d missed CrossFit because Dad didn’t tell her, and she didn’t have her happy cup to load up with coffee. Dumping that anxiety on Catherine didn’t fluster an ICU nurse with two adolescent sons. She immediately conspired with Lynne to demand Dad purchase a new Starbuck’s coffee cup.
Starbuck’s was two blocks away. Lynne could choose a new cup and fill it with Cold Brew Coffee with lots of ice and we’d all be fine. We walked in crisp Denver sunshine alongside busy street traffic that competed with our laughter. A barista guided us around different cup displays until Lynne riveted on a sleek black one. We headed back through a quiet neighborhood with no traffic and a few neighbors walking dogs. By then we’d washed Lynne’s disappointment out of my memory, and we headed to the museum.
But that afternoon Lynne was still upset, and I needed to think about why she was mad at me about CrossFit. Fortunately, Jane needed something for dinner at the grocery store which allowed me to recall our trip. I strolled quiet sidewalks past two-bedroom homes that reminded me of toy Legos models. Sunlight splashed on the reds, yellows and browns on the clean adobe and brick houses in tidy yards. Pine trees and shrubs muffled city sounds in a peaceful neighborhood with nobody outside. I wondered whether people inside these tranquil homes were as perplexed as I was with the thoughts running through my mind.
Lynne and I had arrived in Denver after an easy flight and boarded the airport train. Jane met us and drove to Catherine’s for lunch. During that time Lynne moved tentatively as she sorted out the confusing environment secure in the trust that Dad knew where we were going.
Catherine met us outside her home. Her contagious energy on a stocky frame bumped into a bear hug with Lynne’s matching height and strength. They are mothers of the same age. Catherine is a self-deprecating casual hostess who’s effortlessly in control. Lynne’s uncertainty had evaporated. Her mood lifted as Catherine and she instantly renewed their friendship. Catherine’s two gregarious adolescent boys joined us. A big black lab slobbered his head onto Lynne’s lap, Lynne’s kind of dog. I relaxed as Lynne’s energy rose, staying alert for times when Lynne might need support.
We snacked on crackers and cheese until lunch was served family style. I tugged her sweater to sit next to me to help her, but she brushed my hand away and sat next to Catherine on the other side of the table. Catherine served homemade pizza slices and a Mediterranean salad that Lynne ate casually as she shared in the banter.
Catherine’s dinner went even better once her brother Greg and his partner Natalie arrived. Catherine’s husband joined us for a lively group of nine eating a mixed salad and beef stroganoff in family style, a cozy contrast to Lynne’s formal institutional settings with quiet, halting conversations. She participated in the light-hearted family teasing. Lynne sat across from Greg who aimed his endearing gift for story telling at Lynne. He told stories about his troublesome times from his past until Lynne jumped his story by saying she always found him agreeable. He was flummoxed.
“People have called me a lot of things, by nobody has ever called me agreeable,” he said.
“Yes, you are,” she said. He savored that word out loud several more times the next two days, as if to work on his disbelief, hoping she was right, unconsciously seeking confirmation from the family. I find him agreeable, while at the same time I’ve heard enough anecdotes to understand why he had difficulty absorbing it, even though he’s doing very well. Regardless, Lynne infused him with a dose of self-respect the family enjoyed watching. Her ability to uplift people was one of the reasons she had been a human resource professional for years at Microsoft, the Bill and Melinda Gates Foundation, and several other high-tech companies.
I kept asking myself why Lynne was angry? How should I react. I kept repeating to myself that I’d told her. Why was I clutching that memory to disagree with her? Why couldn’t I say, “I’m sorry, I must have forgotten to tell you?” Was it because she was implicitly calling me a liar? Was I afraid if she lodged me in her head as a liar, she wouldn’t trust me? How could I care for her if she doubted whatever I said? That terrified me. She smiles instantly when she’s always surprised to see me. I crave that smile verifying I’m welcome, helpful, entertaining, thoughtful, wanted, wonderful. Would the smile vanish If she failed to trust me? I make decisions she has to believe I am making in her best interests for safety, dignity, and happiness. I absolutely must have her trust. I declared to myself, “I must have her trust. I won‘t apologize. I didn’t lie to her.” I waited for her to bring it up again so I could convince her to trust me by patiently explaining I had told her, but she probably doesn’t remember it.
I returned to the warm sunroom with Zoe in Lynne’s lap because the TV wasn’t on. Lynne mentioned she was still disappointed to miss CrossFit and that I hadn’t told her. I gave her my rehearsed answer. She nodded and dropped the subject. I was relieved. Soon she was focused on the family coming over for dinner as we pulled out the leaf for the table and arranged placemats and table settings. They arrived and the lively conversations returned.
She followed the conversations at dinner just as she did the day before, even adding her stories. The night stretched into a few more rounds of drinks and confessions of juvenile misbehaviors, highlighted by my confession of a misdeed, I guess, because it shocked everyone more than I expected. Two friends, my brother and I in our late teens and awash in an alcohol induced bravery, pulled four shiny hubcaps off a new Volkswagen Bug in a late-night neighborhood swap. We replaced them with four rusted hubcaps from my Volkswagen Bug. Our theft made the newspaper several days later, including an interview with the annoyed owner.
Maybe I should have kept it secret, but confession seemed good for my soul. I slept well that night after gaining Lynne’s trust again and shedding an undeserved unblemished reputation.
The next morning Lynne announced to Jane and Catherine she wanted to come here every year. Our return plane ride was as smooth as our arrival. When I returned her to her assisted living, she gave me a big hug and said it was a good trip. “Sorry about the meltdown about CrossFit.” Several caregivers told me she enjoyed talking about her great trip to Denver.
I wrote this story to emphasize the importance for a caregiver to maintain trust. However, writing made me uncomfortable with Lynne’s disappointment with me. I also wondered about how Catherine created Lynne’s wonderful experience. Catherine had some skills that fostered Lynne’s strength and I wanted to learn from her.
I remembered feeling Lynne’s transformation when she entered Catherine’s lively living room. The setting had to be a factor because of the contrast with Lynne’s experience in her assisted living. Lynne assisted living lobby has large pillars that break up space into cavernous arrangements of sofas and big armchairs, assuring comfort with deep cushions, but fragile bodies sink into them with wrinkled faces bobbing alone above the arm rests. Lynne frequently sits next to them and asks how they are doing to see if she can help them. She calls residents, “My people.”
Suddenly Lynne had united with a peer driven by similar empathy. She felt independent, not on duty and ready to have fun. Lynne and Catherine shared an inter-personal world with similarities in language, touch, eye contact, verbal speed, assumptions and expression, a relationship completely different than the father-daughter relationship with Dad constantly looking for ways to protect her. She didn’t need Dad’s oversight. That’s why she brusquely pushed away my hand when I tugged her toward a chair next to me. She knew her own mind.
I envied the natural bond between them. Fatherhood fits my faith and I joyfully accept it. I am proud of playing my role. I get reinforced when she is happy to see me. I adore her. She is fun to be with. She laughs a lot. She accepts her life as it is without railing or wailing against it.
My role worries me because she is increasingly dependent on me. I’ve got to manage our resources to cover the oncoming increases in cost for her care. Fortunately, I enjoy investing and calculating spreadsheets to project expenses for dignified long-term care. I believe we will be OK, and I continually reassure her. She trusts me.
I probably obsess about keeping that trust.
There are many levels of that trust. Caregivers have coached me to join Lynne in her reality and then gently refocusing it if need be. That happen constantly. “You already ordered dinner,” or “You were headed for the elevator to go to bed, but now you’re headed for the theater. Do you want to watch the movie?” Or, “Yes, your boys are coming over, but it’s tomorrow night.”
Her being mad at me seemed different. She’d simply said, “I’m mad. You didn’t tell me I’d miss CrossFit.” I found myself walking a street to contain my fear because I thought her trust in me was shaken by that simple statement. What was I afraid of? What would have happened if I apologized and said it won’t happen again? Why did I think she couldn’t handle believing I was imperfect? Was I worried she’d stress every time we’d discuss a trip in the future? I think I was afraid she’d remember this trip like she regrets the Bruce Springsteen concert. Suddenly I felt I was blowing her comment out of proportion. I was obsessing. I was way too controlling.
I finally realized I was protecting my pride by demanding she keep trusting me and believing I had to guide her back to that trust. I had leveraged her lack of confidence in her memory until she conceded she was wrong, that I knew better, that I was right, and she needed to trust me, that I would protect her, that I was her source for truth. It even occurred to me that I may have forgotten to tell her she’d miss CrossFit.
I do not want to tread on her despair. I was disgusted with me.
I pray every day to be humble and I obviously need to. Can I trust her to know I’m not infallible? Can I handle doubt that I’ll take care of everything? That I’ll never make a mistake? Of course I can trust her with knowing I’m not perfect. She remembers my long list of mistakes raising her. She’s forgiven me. And she laughed when I confessed my hubcap heist.
I want to uplift her. I want to join her in her reality. I want to show her compassion. I want to be humble. I want to increase her time with peers outside her assisted living.
I committed to apologize. Soon she asked me about whether it was CrossFit day and I said it was tomorrow. And added, “I won’t let you miss it, like I forgot to tell you when we went to Denver.”
“Yes,” she said. “you did forget.”
And then she lively went on to something else. I’ll remind both of us many more times. She’ll remind me too.