The Tale of the Teacher's Daughter

In fairy tales there is often a young woman who, while innocently going about her life, discovers that there’s a curse looming over her future. I had my fairy tale moment when my father and I were sorting through my grandmother’s personal effects and preparing for her funeral. In my case, the fairy tale wasn’t Disney, it was pure Grimm’s. The curse went like this, “As the only child of an only child who is a loner, an alcoholic, and a heavy smoker, you shall bear the burden of taking care of your father through illness, into death and whatever lies beyond.” Following this revelation, I did what most young women in fairy tales do—I ignored the lurking curse, with all its fear and dread, until twenty-five years later, when it came true.

My father had embraced beatnik and hippie culture from a young age, sporting long hair, bathing infrequently, and augmenting his funk with patchouli. Even after the sixties and seventies had passed, he still had an unmistakably hippie-guy style. He was an incessant reader and a soft-spoken English teacher at a liberal, conscientious-objector-type of Quaker school, yet he was also deeply intrigued by Japanese samurai culture and Nazi history. 

His approach to parenting was similarly contradictory. Sometimes he would rouse me before dawn, and we would share a magical morning watching the city wake. The low-lit streets and sleepy clatter of shopkeepers rolling up security gates would progress into the bright cacophony of a full-on Brooklyn morning. Other times, drunk, he would engage in a cat and mouse exchange in which he repeatedly asked questions to which there was never a correct answer. Occasionally, he was violent. He had a dark, wry wit and could be a good sport even when I snuck exploding loads into his cigarettes. He was also shy and lonely.

As I made my way through adolescence and into adulthood, I carefully kept my father at arm’s length both emotionally and physically. I moved to Portland, and when he retired, he followed me there. Even though I was in my thirties, my father could still make me feel embarrassed and uncomfortable. Once, one of his female neighbors let me know that he walked around his house naked with the window shades open, although she said, “He isn’t too bad looking for an old guy.” When I was trying to get pregnant and my partner and I were considering sperm donors, he inexplicably offered me his. Yet, there were other times when my father and I would have dinner and talk about books and politics, and he always shared a darkly amusing story he had saved for the occasion.

 

Then one day he called me to say he had noticed blood in his urine. It turned out he had a tumor the size of a softball in his bladder, and it was cancerous. The doctors recommended immediate surgery followed by radiation treatments. I took him to the radiology department to get his very first tattoos (for the proper alignment of radiation doses) and then to the hospital to have the tumor removed. After his surgery, the hospital staff called to say that he was fine and in recovery. An hour later they called back to say that he was not fine. My father was adamantly refusing to stay in bed and security had been called. By the time I got there, he was in bed, eating some chocolate pudding and chatting comfortably with one of the nurses. In his post-anesthesia confusion, he had been convinced that he was being illegally detained. He kept insisting that his Fourth Amendment rights were being violated. Even if it was due to extreme disorientation, I felt oddly proud of him for asserting his constitutional rights.

After the hospital incident, my father felt that he was forgetting things. Bruce, his primary care nurse, suggested an Alzheimer’s assessment. Bruce managed to strike a balance of directness, honesty, and mild crabbiness that worked for my dad. After a specialist delivered the Alzheimer’s prognosis, Bruce took over and got down to business. He gave me a packet of resource materials about caring for people with Alzheimer’s and another packet about finding Alzheimer’s care. He prescribed memantine, a drug which, according to the National Institute of Health “can somewhat delay the worsening of cognitive performance.” 

Or, as Bruce said, “There aren’t any real treatments, but this might help a little.” 

Then Bruce very intently told my dad, “Ron, you have got to quit drinking and smoking. It’s bad for your heart and anything bad for your heart is bad for your brain. It’s like throwing gasoline on a fire.” 

My father thought about it carefully and replied, “I will try to quit drinking, but under the circumstances, I just can’t face trying to quit smoking.”

After a few days, we looked at the care resources, filled out and filed his health directive, and he gave me power of attorney. It occurred to me then that this was the “fairy tale” moment that I had been dreading, but he needed my support, and so I gave it. The Alzheimer’s specialist had recommended that my father move into memory care as soon as possible so that it would become familiar before the disease worsened. My father, however, preferred to stay in his home as long as possible. He loved his cats and his garden, the familiarity of friendly neighbors, and the rapport he had with the owners of his local coffee shop, which he walked to every morning. I know that if I was faced with a similar choice, that’s what I would choose. So, I promised to help him stay in his house, and we agreed that when it was no longer feasible, he would go to a care facility. 

Fairy tales have a lot to say about promises. Keeping a promise is good; breaking a promise brings woe; and pausing to think before making a promise is essential, because the price is often steep. Yet promises often seem reasonable when you make them. The miller’s daughter needed to spin straw into gold in order to save her own life, and so why not promise her first-born child to Rumplestiltskin for some help with the task? My father had good, clear reasons for wanting to stay in his home. Why wouldn’t I promise to do a few small things to make that happen?

I started with the easy tasks, like setting up autopay for his bills or having cat food and other necessities delivered. He wasn’t cooking regularly, so I signed him up for a meal delivery service. He worried that he would forget to take his heart medication, so I called him in the mornings and evenings to make sure that he did. In spite of the calls, my father worried that he might not actually be taking his pills. I got him pill boxes with daily compartments, and we agreed that he wouldn’t take the pills until I called. 

Then the cellphone became hard to navigate—all the little buttons were confusing. We tried a simplified “senior” phone, but that made things worse because it was totally new and therefore held no memories for its navigation. Next, money denominations became puzzling, so I set up an account at his coffee shop and started buying him cigarettes, beer, and snacks. I knew that the cigarettes and beer were bad for him, but they had been bad for him for a very long time. I would buy him a weekly allotment of two tallboys a day, plus a few extras. Sometimes he drank most of his allotment in a single day, and his cognition took a big hit. I often reminded him that he had told Bruce he would try to quit drinking. 

Unexpectedly, my father’s smoking decreased. His porch began to sprout half-smoked cigarettes, as if he had lost the thread of smoking midway through.

Still, despite occasional lapses, he was mostly himself. He remembered people’s names. He didn’t wander off and get lost. Although he no longer read new books (he understood the individual words but struggled with the overall meaning), he still enjoyed his favorite poets. He listened to OPB, he gardened, and he talked to the cats and his neighbors. In conversations, he would still trot out arcane bits of knowledge.

The steep costs of my promise built slowly. At first, it was just the extra time commitment, taking care of someone else’s life as well as my own. As my father struggled with more and more daily tasks, that commitment grew, but the real costs came from providing emotional support. Losing his memory made my father understandably anxious. I spent a lot of time and energy reassuring him about his wallet, his pills, and his cats. I would get impatient revisiting the same subjects over and over and over, again and again and again. It was wearing and stressful and sad.

When I was young and had first glimpsed this looming future, I was certain that my ambivalent feelings towards my father would make me resentful and powerfully angry at having to take care of him. Instead, taking care of him chipped away at my anger. Watching him cautiously navigate through his house one day, sporting his watch cap and sweatpants, something in me shifted, and I thought, He is just an old man. He loved being taken care of. One day he said to me, “This is one of the happiest times in my life.” It was so sweet, but it also made me feel a sharp regret for his life. 

In 2018, I went to the East Coast for my daughter’s college graduation. I hired extra caretakers and reassured my father that I would still be calling twice a day. In spite of this, my leaving made him very anxious. So anxious, that he went out on his front porch and cried and cried. Some strangers came along, and he told them he was all alone with no one to take care of him. The strangers called social services. The scheduled caregivers arrived and took care of the situation, but social services later followed up with a home assessment and interviews with me and my father. This confirmed what I had heard from others: that by agreeing to help my father stay in his home, I had become legally responsible for him. I could be held criminally liable if, in an unsupervised moment, he were to have an accident and got hurt.

I started to recognize that he could no longer stay in his house without round-the-clock care, which was too expensive. I got him on the waitlist for the best memory care facility he could afford. It was a converted monastery, which blunted its institutionality. It had a lovely fenced garden with fruit trees and roses. My father’s savings would cover a private room for one to two years. He would have to share a room once he couldn’t supplement the Medicare coverage.

My father moved there in 2019. His room was on the fourth floor and overlooked some trees. We decorated it with Indonesian shadow puppets, a calligraphy scroll, and other favorite things from home. 

Moving required him to go cold turkey on drinking and smoking. Amazingly, he hardly noticed. He mentioned smoking only once or twice; and when I smuggled him a beer to drink with some burgers, he feared breaking the rules so much that he only reluctantly drank it.  

What was hugely stressful was having people around constantly. He was palpably tense from having to navigate so many social interactions with people he didn’t know. His mind deteriorated rapidly, and calling him on the phone was no longer an option. I visited often, bringing him sweets and takeout meals to make up for the bland mass-produced food. Getting to his room felt like running a gauntlet, and I guiltily found myself averting my emotional gaze, trying not to be overwhelmed by sadness. There were locks upon locks, security codes for the gates, the doors, and the elevators. On the fourth floor, most of the residents would be in their rooms or watching the communal TV, with the exception of a friendly woman who had been a financial administrator at Portland State University and liked to keep active by walking the halls. She always ended our conversations with a grin and the admonition, “Don’t get old.” 

Then came COVID. I got to see my father once in early 2020, when nursing facilities were starting safety protocols, but before they realized how bad things were going to be. A caregiver brought my father down to the garden, and he stood there glaring at me through the gate. He was very pissed off at my not visiting and said testily, “I wish I could have a hug.” I hope that I said, “Me too,” but I fear that I gave him explanations about COVID and why I couldn’t. Those were the last words my father ever said to me.

Memory care went into a complete lockdown. Visitors were not allowed, and the only communications I received were frequent emails about residents and staff having COVID. In August 2020, I got a call that my father was at the hospital in a COVID ward. I still was not allowed to visit him, but several amazingly kind nurses called me regularly. He survived and returned to memory care but relapsed several days later. By the time he tested negative and was again released, he was very close to death. (COVID takes a particularly high toll on people with Alzheimers.) I was now allowed to visit. 

My father was unconscious in his room, his breathing loud and labored. I sat with him for the day, reading him Beowulf, Gary Snyder’s poetry, and other poems I knew that he liked. I smuggled in a beer and sponged his lips, alternating beer and water. He was unresponsive, except for a very small sound he made when I told him that I was going home to sleep for a bit. The next day, I continued to read to him; but, the next evening when I went to leave, he didn’t make a sound. He died in the night.

 

A Grimm’s fairy tale always contains a lesson, if not a happy ending. Caring for a person with Alzheimer’s is definitely a grim lesson in what our society values, but fairy tales serve to promote good behavior and individual choices rather than challenge the social order. In fairy tales, there are good kings and bad kings, but there’s always a king, followed by the princesses, the knights and, lastly, the poor peasants. And this tale is about two of the peasants, my father and me.

Throughout the years, I had felt my father’s love and recognized our similarities, but this kinship continued to be punctuated with episodes of emotional weirdness. He often flaked out on get-togethers or would be drunkenly emotional and intense. He showed up for significant events at his most unwashed and skanky. He apologized several times for his violence and abuse, twice in drunken, teary apologies, and each apology felt more about him than about me. 

At the outset of our discussion about his illness, my father said that he did not want to be a burden and that I shouldn’t do more than I felt willing to do. Although that sounded good, I doubted that it was going to be that emotionally simple. As his illness progressed, there were a lot of things my father didn't want to do, especially having caretakers in his house or moving into memory care. While he expressed his reluctance to make these changes, there were never recriminations; he never pushed me to take on more or got upset with me for making the difficult choices. Even though he was dealing with his anxiety and fears and the awfulness of Alzheimer’s, he worked hard to be kind and considerate of me. In an unexpected twist, the relevant promise in our story was not me promising to care for my father, but my father’s promise to abide by the limits of that care. Keeping this promise to me did what his apologies never could—it allowed me to forgive him. And by forgiving him I could love him more freely. 

He was my father, Ron Patterson, a man whose words and humor could spin straw into gold.

Tags

Family, Aging