Oyster Roast, John's Island, January 25, 2020
My Last Photograph of Billy
Where do I begin to tell the story of Billy?
William Winfield (Billy) Utsey, Jr. was born in Charleston, South Carolina on February 1, 1945. During the year I knew him, he walked with the unlikely twins of dementia and boyish delight. Billy had more fun than anyone I've ever known, but he daily had to deal with the confusion and lack of short term memory caused by dementia. When he was distressed and confused, he'd ask me to take him to a specialist so he could get a different medicine that would help him "think better." Except for the brain disease he was in excellent physical health.
For one year, from January, 2019 to January, 2020, Billy lived in Canterbury House, a large apartment complex in Charleston, South Carolina owned by the Episcopal Diocese of South Carolina. It was designed to house retired people who are capable of independent living. It stands thirteen stories high in the historic district where Billy grew up, Charleston's first high rise. His only living relative, a younger brother, lived close by with his girlfriend in a house on Daniel Island.
In January, 2019, the woman Billy had lived with for 19 years moved him into apartment #802, a tiny efficiency unit. Although Billy had been diagnosed with dementia, she felt he could take care of himself. Therefore, she left Billy alone in his newly decorated apartment, got in her car, and returned to her home in the capital city, a two hour drive away.
Five months later, on June 1st, I moved into a one bedroom apartment #803 next door to Billy. On the day of my move, I met Billy and her in the hallway. She had driven from Columbia to pick up Billy from the hospital. He had gotten confused and taken a double dose of his medication. She told me that she would get him settled in his apartment and then drive back to Columbia because she was still working and needed to get back to her job. They were both charming and pleasant. I had no idea Billy had dementia. I also had no idea of how he was going to change my life.
I would quickly learn from others that Billy wandered around the complex like a lost soul. Everybody felt sorry for him because he seemed so lost and alone. One woman whispered to me, "He has dementia." She looked so sad.
Although I was shocked, it made sense. I knew something was wrong, but I could never put my finger on exactly what was amiss. Now I had a name for it and a diagnosis. The dreaded DEMENTIA.
The stress of being by himself in a large apartment complex with dwindling short-term memory took its toll. Billy stopped bathing and sometimes wore the same clothes for a week or longer. His brother who was in charge of his bank account and finances, occasionally brought in a few groceries: canned soup, cereal, ice cream, Coke, white bread, and packaged sandwich meat. Billy quickly drank up all the cans of Coke in the refrigerator, ate all the ice cream from the carton in the freezer, and occasionally scooped out a handful of cereal from the box and popped it into his mouth. Otherwise, he didn't eat. He didn't seem to know how to make a sandwich so the luncheon meat and bread were often untouched. Same for the canned soup. Without much of an appetite, he forgot to eat. He started losing weight, was unkempt, and wandered around the parlor looking to engage with whoever he met. He wanted and needed human interaction more than anything. His stories were about his childhood and he'd tell them over and over, sometimes in the same sitting. At times people rolled their eyes when they saw him coming and hurried away, unable to deal with his loneliness and neediness.
His brother picked him up once a week to take him to physical therapy or a doctor's appointment. They ate lunch at a restaurant, then Billy was dropped off again with a week's supply of medicine. He was left alone to cope as best he could.
Soon after I moved in, a neighbor down the hall saw that Billy looked like a castaway and stepped in to help him. Marilyn was an angel of mercy in Billy's life. She started feeding him a home-cooked meal each day. She did his laundry and cleaned his apartment. After feeding him his breakfast, she made sure he got a shower as often as possible. She took him out walking with her dog, Oreo. She bought him groceries with her own money. He was appreciative of all she did and knew she loved him.
About the same time Marilyn intervened in Billy's life, he reached out to me for help. He asked if I would take him to the emergency room because he was in pain. It was on that visit I got to know my neighbor, Billy. To thank me for taking him to the hospital, he invited me to dinner at Folly Beach. We had a wonderful time and saw each other on a daily basis after that.
Soon after, I learned the routine Marilyn established for him and helped out when she was unable to be there to care for him.
Between the two of us, Marilyn and I made sure Billy took his medicine properly, showered regularly, ate hot, nutritious food, and put on clean clothes every day. Billy loved our attentiveness and blossomed under our care. He relaxed and responded to his new life with boyish delight.
During this period, people who saw Billy on a short-term basis would never guess he had dementia. He was jovial, full of funny stories about his past, well dressed and well groomed. Always smiling with a kind word, most people at Canterbury House enjoyed Billy even though he repeated himself often.
For the first few months I knew Billy, Marilyn took care of his physical needs and I took care of his emotional and spiritual needs. I was well equipped to do so. For six years in Tennessee, I met weekly with Alzheimers' patients on a locked Alzheimers Unit in a nursing home, so I understood how to calm Billy and to make him feel comfortable. It was natural for me and I enjoyed being with him.
Quickly I learned how important music and dancing were to Billy and how they lifted his spirits. He and I attended the Sunday afternoon dances in the Canterbury House parlor. He was full of boyish smiles and charm when he danced, especially the shag. He looked just like a preppy teenager on the dance floor and probably felt the same way.
Dancing the cha cha, shag, and twist with Billy made me feel like a teenager, too. I had not danced for decades. Our enjoyment of music and dancing soon opened a door into the wider world.
Billy often talked about Folly Beach. He wanted to dance on the pier there, something he had not done since he was a teenager. I found out about Shagging on the Pier under the full moon and got us tickets. It was one of the most fun evenings either of us had ever had. Then Billy wanted to attend Motown night on the Mount Pleasant pier across Charleston Harbor. I got us tickets and off we went. From then on, we were regulars at dances on the pier at Folly Beach or at the Mount Pleasant pier. Like a couple of teenagers, we were dancing in our seventies, footloose and fancy free!
Those evenings of music and dance were but the beginning of many fun activities in Charleston and on the beach. Billy became my best buddy in fun. He took me everywhere in Charleston and told me about the old days and how it used to be. I loved being with him and he was clearly having the time of his life.
I invited him to go to church with me and he grew to love Grace Church Cathedral. As a former Methodist, he went to confirmation classes each Sunday they were held and was confirmed by Bishop Frank Griswold on the Sunday before Thanksgiving. He loved attending church services, both during the week and on Sunday morning.
About this time, I got a full time job so I had to leave Billy for 10 - 12 hour stretches on weekdays. I fed him breakfast before I left for work and Marilyn checked in on him and fed him lunch. He often was waiting for me in the parking lot when I arrived back at Canterbury House between 5:30 and 6:00 p.m. We had supper together and I got to hear all his childhood stories one more time.
They were fresh to Billy and brought him so much joy, so I enjoyed listening to them.
Both of us were early risers so we were in bed by 8:00 p.m. most weeknights. He kissed me goodnight and walked next door to sleep. As soon as he woke up the next morning, he knocked at my door, often bringing me a cup of coffee he had gotten from downstairs.
Being away from me all day long stressed him. Under stress, his short term memory evaporated, but he remembered episodes from his childhood like they happened yesterday. He spoke about his mother and father constantly. He had a deep appreciation for his parents and his childhood.
He often told me I was the love of his life. He felt safe with me. He knew I loved him.
He retreated deeper and deeper into his childhood as the brain disease claimed more and more territory. The love and trust between the two of us continued to grow, as did his dependency on me.
Finally, the inevitable happened. Early on a Saturday morning in January before most people were awake, Billy went downstairs to get coffee. He could not find his way back to his apartment. According to Betty, the woman at the front desk who watched everything on video cameras set up all over the building for security, Billy wandered up and down the elevators for over an hour becoming more and more anxious trying to remember where his apartment was. Believing he was in his apartment, he walked in on another resident, who was frightened and yelled at him to get out. She threatened to call the police. The executive director of Canterbury House decided Billy could no longer live in his apartment and had to leave that very day.
His brother was his emergency contact so he and I met in my apartment to discuss where Billy could stay on such short notice. His brother stated he did not have room for Billy at his house. I called a close friend of Billy's and asked for help, but she could not take him. She called another friend but he could not help Billy, either.
Before nightfall, his brother picked him up with a little suitcase I packed for him and took him to a motel in Mount Pleasant a short drive from Charleston. The two of them stayed in the motel together for three weeks. On Valentine's Day, Billy exploded in anger and attacked his brother.
The two of them had never gotten along well, according to Billy and others who had known them since childhood. Early on, as boys, their differences emerged as near polar opposites in disposition and personality.
Over dinner in a restaurant a few days before the explosion, Billy confided in me that his brother was constantly criticizing other people and it made him angry. He was particularly aggrieved when his brother downgraded someone he loved. Billy confessed that he was having a hard time controlling his temper around his brother, lamenting that he was afraid he was going to jump on him and beat him to death. I encouraged Billy to get up and walk out of the room when he felt out of control.
The unthinkable happened on February 14th. Billy flew out of control and jumped on his brother. As a result of the beating, his brother was admitted into intensive care in a local hospital and Billy was transported by ambulance to a hospital in Hilton Head for psychiatric evaluation.
A few weeks later, the pandemic intervened. Because the Covid 19 virus was rapidly spreading in South Carolina, Billy could not leave the hospital to go into another facility, one appropriate for the treatment and care he needed. He ended up staying in the hospital for almost 6 months.
Unfortunately, his brother would not allow me or others to call or visit Billy. He claimed the doctors would not allow Billy to see or talk to anyone except him. When I called the hospital, I learned that his brother had to approve the people Billy was allowed to talk with. It was distressing to be blocked from all communication with Billy, but I cannot imagine how lonely and terrifying this must have been for him. It is comforting to know he was surrounded by therapists and nurses and in the care of a psychiatrist. Knowing Billy, I'm sure he made friends of all the therapeutic staff.
The last time I spoke to Billy was right before Valentine's Day. He was in my thoughts and prayers every day as the weeks and months passed. I looked forward to visiting him when he was transferred from the hospital in Hilton Head. Little did I know, I would never see or talk to him again.
When it was safe to transition Billy to a long-term care facility, in early August, the therapeutic team transferred him to a facility approved by his brother close to Columbia. Once again, Billy was alone in a strange place without contact with those he loved and trusted. His brother did not inform me that he had been moved.
It did not go well for Billy at the new facility. Billy didn't like it there and wanted to go home. He tried to get out the door and in a scuffle, he ended up falling. He was transported to the hospital where 9-10 staples were placed in his head.
His brother drove to the facility to take him some clothes and reported that Billy was not responsive. Since Billy didn't seem to know him, he drove back home.
A few days later, on Sunday, August 9th, nursing staff went into Billy's room to deliver his lunch. He was found dead in his bed. He was 75 years old.
A friend of Billy's brother called me on Thursday, August 13th to inform me that Billy had been found dead the previous Sunday. She related the details I wrote about above about his transfer to the facility near Columbia and subsequent events. I asked about a funeral, but she said nothing had been planned. She stated that his brother had ordered an autopsy to determine the cause of death and that Billy would be cremated and his ashes placed next to his mother's burial place.
Needless to say, I was devastated when I learned of his death. I had not seen or talked to him for six months. Shocked and grieved that I would never see him again, I prayed for him and for all who loved him. I immediately called Marilyn to tell her he had died. We poured out our grieving hearts in lament. God gave me the strength to plan and lead a Memorial Service for Billy at Canterbury House on Saturday, August 15th to celebrate his life among his neighbors there. The following is a summary of that beautiful morning.
THE UNBROKEN CIRCLE
This morning's memorial service for Billy was a joyful gathering of his friends in his favorite place, the Canterbury House gazebo, under sunny skies after a stormy night. We prayed, sang, and told our favorite stories about Billy. There was much laughter and a few tears. The last song we sang was "Will the Circle Be Unbroken?" It was then that our group decided we needed to continue meeting each week to pray, sing, and share our lives. It felt good to be together and we didn't want to stop. We named ourselves "The Unbroken Circle" and plan to meet again next Saturday at 11:00 a.m. Billy was surely smiling that the fellowship he enjoyed so much at Canterbury House was strengthened in his memory. Shine on, Billy.
Lord, thank you for Billy's life that touched so many of us at Canterbury House. May his soul rest in peace and may light perpetual shine upon him. May he one day rise in glory everlasting. Amen.
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| Billy was confirmed at Grace Church Cathedral on November 24th, 2019 |
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