NOTE: I started this account four days after our 46th Wedding Anniversary on December 18, 2023. Myra died five days later. It sat in my draft folder for a year and I post it now on the 1st anniversary of Myra’s death for the sake of documentation and as an account of our Parkinson’s journey.

On Tuesday, December 18, 2023, my wife, Myra, and I celebrated our 46th Wedding Anniversary. I use “celebrate” loosely since she was in bed all day, and I was addressing Christmas cards. You see, Myra was at the end of her 30+ year battle with early onset Parkinson’s Disease. We always knew that a time would come when she would succumb to the degenerative brain disease that impacts motor functions.

Still, she had several other symptoms, which we were not expecting with the initial diagnosis. She was spared the common symptom of tremors but had stiffness, slowness of movement, and uneven and unstable gait…sometimes resulting in falls. In fact, complications from falls are a leading cause of death in the disease process. She had several trips to the hospital for falls, resulting in lacerations, a fractured nose, and a concussion. Our friend and physician once said that Parkinson’s patients seem to fall in slow motion, which was true of Myra. Once, while she was still ambulatory, I left her for a bit only to find her after a tumble at the bottom of the basement stairs. Amazingly, her only injury was a hyper-extended finger. 

She also developed orthostatic hypotension, a medical condition that results in a drop in blood pressure when standing up. This condition led to occasional fainting episodes. While generally controlled by medication and compression stockings, it was never totally mitigated and resulted in her first significant loss of independence: driving. Additionally, the condition made her more uncomfortable holding her infant grandchildren for fear of fainting while they were in her arms. 

Another problem in advanced PD is swallowing difficulties, resulting in choking or aspiration. A weak cough prevents clearing aspirated liquids/food and can lead to pneumonia.  Pneumonia is a more common cause of death among people with PD than the general population. While Myra struggled with some aspiration of liquids, we, fortunately, had only one serious choking incident in which a large piece of beef obstructed her airway. I was able to remove it, avoiding a horrific death experience. 

But the hallucinations, the imagining of children playing outside or sitting in the bedroom, were an unexpected and disconcerting part of the journey. While the sightings were primarily non-threatening, they were so prevalent that she often didn’t even inform me of the apparitions’ frequency. Usually, they were our own daughters as children, who appeared at night in bed with her. When two of our daughters traveled from Texas for a surprise visit, she was genuinely uncertain when they appeared at the door and asked, “Are they real?” Another time, I was in a neighboring community when I received a cell call from one of the women attending a Bible study that Myra was leading in our home that night. When Myra took the phone, she told me a woman was dancing in the backyard and igniting the grass on fire with a torch. She was assured by the women at the house it was not real. I arrived home after the Bible study, but a few women remained with Myra. After they left, she confided that a “man” had been standing in the corner of the room all evening.

In the final years, we began dealing with dementia. Myra began to think there were “three Chucks: Chuck the husband, Chuck the pastor, and Chuck the photographer.” She would often talk about one of the other Chucks in my presence. We were driving back from visiting our children in Texas one late night. I pointed out an airliner that was on course to transit the moon. I commented that I would have liked to capture it if we had not been on the turnpike. Her response was, “Chuck likes to get those pictures.” Another time, as I left to take care of a ministry responsibility, she asked the caregiver, “Which Chuck was that?” One night, as I got her ready for bed, Myra looked at me and said, “I haven’t seen you for six months. I’m glad you’re back.” I’m unsure which Chuck had taken care of her during the preceding months…but I am pretty sure it was me.

Over time, there was a growing loss of recognition of her family. It was only occasional, or Myra covered it well (which I think she did), but by August of 2022, it was more apparent. Two of our daughters and families were in town, and when we returned from a day at the Iowa State Fair, Myra implored her caregiver, “Don’t leave me with those people.”

It was hard to see her grapple with the confusion that set in. She was uncertain where she lived for years, thinking it was an institution rather than our home. She would ask how long she had lived in “this place,” who was in charge of it, and how many others lived there. She was very concerned about our marital status and was uncomfortable sharing a bed with me if we were not married. I put our marriage license in a frame so she would know we were “legally and morally upright.” She repeatedly asked if I had a brother, having previously known I only had four older sisters. I finally asked her if another man who looked like me cared for her. Myra replied, “Yes.”

God provided a wonderful an incredibly knowlegable and caring neurologist, Dr. Lynn Struck, who treated Myra for decades. Additionally, a group of volunteers from our church stayed with her Sunday morning while I had church services and other occasions when I needed to be engaged in evening ministry activities. When we came to a point that Myra could not be alone, we contracted a paid service and excellent caregiver, Janet Webb, who came in for 20 hours a week, giving me additional time to engage in ministry outside the home. Finally, home hospice care was a timely resource in Myra’s last year and a half of life, bringing in a nurse, massage therapist, and a bathing aide several times a week, as well as making available supplies as Myra’s condition worsened.

I had made a commitment to care for Myra at home. Thus, I was genuinely grateful that I could fulfill my pledge to her. After staying up all night and monitoring her condition, I dozed off between 5 and 6 a.m. on December 27, 2023. I awakened to find Myra had passed peacefully by my side.

There is no way to fully prepare for that transition of one’s spouse from the mortal to the immortal. Having lost her over time, our family often spoke of the grief we had already experienced in not having Myra as she had been. Even though she was still present, she was not the creative and fun grandmother to her grandchildren as she had been to her daughters. She could not be the gifted Bible teacher to children and women as she had been even as late as her early 50s. We lost our dreams of retiring together and traveling to see family and the sights we always longed to behold.

But that final “loss” of her presence has been different. The aloneness is palpable. Even though a day may be filled with friends or family, there is always a sense of something missing. I remember walking into the funeral home with my mother as she went for the first viewing of my dad after 62 years of marriage. Though she wanted to view him alone, one sister and I insisted that we accompany our 85-year-old mother. As she stood there, weeping at my dad’s casket, she said, “I feel like a part of me has been ripped out.”

I get that now.

My consolation is that I know I will see Myra again. Her faith in Jesus Christ as her Lord and Savior guaranteed her eternal life even before she breathed her last breath. John 5:24 says, “Truly, truly, I say to you, he who hears My word, and believes Him who sent Me, has eternal life, and does not come into judgment, but has passed out of death into life.” That hope sustains me, my children, and all who loved Myra.