My father, John Vernon Twelker, Jr. was born in San Diego, California on March 6, 1937. He died five years ago today in Tucson, Arizona, July 7, 2014.
Four or five years earlier, we had noticed important signs of memory loss. Medical testing had confirmed the diagnosis of Alzheimer’s disease. Dave and Hazel, my brother and sister-in-law lived in a different house on same Hawaiian property. For a couple years he was able to manage on his own with substantial help from family. Over time, it was clear that he needed daily in-home assistance. That worked well for a year or so but it was becoming clear that he needed 24-hour care. That type of service in Hawaii was about $6,000 a month while in Tucson I found excellent care for $3,000 a month, and my dad could afford that. We knew it could be a difficult transition, but we also knew that most of the time my father was not entirely aware of where he was.
Recommended by a coworker whose father also had dementia, in the summer of 2013 we moved my dad to a place called Desert Serenity. It was owned by Giselle, an experienced nurse and caregiver and located several miles to the south of my downtown Tucson home. It was a small, five bedroom, family-run operation.
Mostly, the transition went well. His entire life my father had been very social, and here was no exception. He made friends with the staff and other residents. I received several panicked telephone calls during brief moments of clarity. He said that he had been kidnapped and taken to an unknown location. He needed me to try and find him, rescue him, and take him home. I learned to comfort him and reassure that all was okay. I would come as soon as I could. The staff knew how to distract him with a conversation or task to do. Mercifully, soon he would forget.
We established a routine. I would pick him up after work on Wednesdays and take him out to dinner, and on Sundays we went to church and then out for lunch. We tried all of the local restaurants in South Tucson and determined that our favorite was Los Portales. It was a family-run business located just blocks from Desert Serenity. The food was excellent, and the restaurant staff treated him like a rock star. He loved the attention as he slowly made his way across the restaurant floor to his chair or booth. His favorite was Filetes de Pescado a la Veracruzana, grilled fish with a tangy sauce.
In the spring of 2014 we began having some difficulty. We liked sitting in one of the booths, but more and more often he would not be able remember how to sit down. He would stand next to the seat, perplexed on how to fold his 6 foot, 4 inch frame onto the bench seat. After ordering and being served, sometimes he just looked at his food and fork and back again with a perplexed look on his face. He was highly motivated, however, to take a bite. Oh, how he loved food! Usually all it would take was for me to remind him of how to do it. He would finish half of his plate, and the staff would wrap up the rest to warm up for lunch the next day.
We ran into a similar problem when getting into the car. I’d have to coach him on how to bend his knees and bend over to get in. He was very concerned about getting injured which left him paralyzed with fear, unwilling to move. On one evening, for five or ten minutes anyway, I was concerned that I wouldn’t be able to get him back into the car.
Almost always compliant and good-natured, he began giving the staff a hard time, only during bathing. He accused the staff of molesting him during the bathing process. Of course, I considered the possibility that one of the staff could be molesting him. But that seemed highly unlikely given that I knew the staff well and they all were exceptional. Most likely, he was misinterpreting their attempts to bathe him as an assault. Giselle told me that this was common towards the end of life. The barriers were coming down. He was revisiting childhood traumas. In a way, I was happy he was fighting back. He was finally able, in his last days, to say, “No! I won’t take it anymore!”
Monday, June 30th I received a telephone call as I was seeing patients in the eye clinic. “Do you have a few minutes to talk about your dad?” Giselle said. “Sure, no problem. I have a few minutes between patients,” I replied. “I believe it is time to request hospice care for your dad. Hospice care is not only for those who might pass away in the next weeks or months,” she continued. “We have seen steady declines in all of John’s functions. If he meets the entry criteria for the program, Medicare would cover a hospital bed, additional supplies, and staffing when needed. Just in the last few weeks, he lost the ability to feed himself on a regular basis.”
Giselle continued, “If you agree, what I could do is call Casa de la Luz Hospice Care. They will send a nurse to do an assessment. If he qualifies, Medicare will pay for a hospice care nurse and other necessary medical equipment,” Giselle said. “Yes, Giselle. Let’s do it,” I said.
By Tuesday afternoon the hospice care had been approved, he had an assessment done by a hospice nurse, and supplies had been delivered. I went over after work on Tuesday and made sure he had a comfortable chair to sit in and that his CD player, CDs, and headphones were working properly and accessible. One of his favorite activities was to listen to music. He loved relaxing music like Enya, Andreas Vollenweider, and probably his favorite, Phil Coulter.
I was out of town two days later when I received another call. Giselle said, “Your father has fallen into a coma. Is there any way you could make your way here?” “Of course,” I replied, “I’ll be there tomorrow.” I called my brother, sister, and nephew Sky. By Saturday we had all arrived, including my sister-in-law Hazel.
Once we were all there, my father woke up. It seemed like a miracle at the time, but anyone who knows my father knows he loved a get together, whether it be a meal with 15 or 20 people, or simply chatting in the late afternoon over a cappuccino or latte he had made. If we were there, he wasn’t going to miss the opportunity to enjoy the company and fellowship. By now, however, he had a very difficult time communicating. He struggled to speak. He would remain awake for an hour of or so before he needed to rest.
We took turns sitting with him as he slept, sometimes holding his hand. When he would awaken we would gather around. Saturday afternoon he asked to speak with his identical twin brother Paul. We dialed up Paul and put him on the speaker phone. I have experienced few things more touching and profound than witnessing the last conversation of two brothers so close, so similar in many ways, and yet of course quite different.
As Sunday progressed another dynamic developed. He would sleep for hours at a time and wake up and be able to communicate a little. But after a while his breathing would change and his body would begin to vibrate. I discussed this with the hospice nurse and she assured me that his was part of the dying process, at least with many Alzheimer’s patients. The amyloid plaques that caused the dementia were now attacking parts of the brain necessary for life. It was a small seizure. He was on pain management medication and we were doing all that could be done to keep him comfortable.
It felt like he could easily pass away during one of the seizures. It also felt like he was trying his very best to not pass away. After all, all of his children were there with him along with Hazel and Sky. It was a get together just like countless other get togethers we had enjoyed all of our lives. There was no way my dad would miss this, or at the very least, he was going to stay around for as long as he could.
This was the very intimate failing of the body, not asked for, not desired. And yet it was happening. It was the most open and exposed my father had ever been. All his life he was an intelligent and capable man that treasured his health and activity. He worked hard on his farm in Hawaii planting hundreds of native trees. He devoted a portion of his land to a 2.5 acre solar array to produce clean energy and provide an income. He was an avid windsurfer well into his 60’s which required a high degree of skill, agility, and physical fitness. He was a self-described health food nut. He was an author and speaker. He was father, and then loving grandfather, Papa Maui to his grandchildren.
For his body to be failing, involuntarily failing, in front of family and loved ones could have felt embarrassing. He was absolutely vulnerable, open, and unable to hide what was happening. This was his worst fear.
Thinking back on my youth, I remembered him as a strong and stern father, sometimes harsh and judgmental. I remembered how I worked so hard to seek his approval. I remembered how he cried when I announced to him that I was not a Christian. I did not believe the story was required for me to believe to be a Christian, I said. He cried, he said, because he wanted to be in heaven with me and other loved ones and with God for eternity. He did not want us to be separated. He did not want to see me suffer in hell.
In these last days, I would sit with him, just be with him. There was little else to do. Every now and then I would think, “There must be something more we can do.” But there was nothing. I was not in control of what was happening nor was he.
During the seizures, every few hours, Dave and Hazel who are also strong believers in the Christian way, would sometimes sing hymns. At any moment, it felt that he could breath his last breath. And yet over and over that weekend, we would gather and sing or sometimes someone would say a short prayer, and the tremors would subside. He would fall back into a peaceful sleep for several hours. Twice a day we would all leave the room and allow the hospice nurse and other health care workers to do an assessment, gently clean him up, give him his pain medications. We took turns sitting with him, holding his hand. We made sure to get rest ourselves.
It was on Monday afternoon that I realized that as long as we were constantly with him, my dad was going to stay as long as possible. In addition, even though he was on pain medication, he was suffering. His body was relatively strong and he could probably keep this up for quite a while, probably days, maybe weeks. I wasn’t sure he felt comfortable dying in front of any one of us, and certainly not a group of us. I recommended that we all take a break, let him rest. If he wanted to remain alive, he could rest and we could be together later. If he wanted to die, he could pass away in peace. We all agreed and left his room. We went over to an identical but uninhabited house next door. It was being prepared as another care home but wasn’t quite ready yet. We chatted. We got some food.
My sister wanted to sit with him alone Monday evening and she did that. Then we left him alone again. Perhaps a half hour later, Sky went to check on him. Sky came back with an astonished look on his face. He said, “He’s gone. I just went to check on him and he’s gone.” Immediately, I felt relieved. I felt we all, everyone involved, had done a good job, especially my brave father. He faced death courageously, with dignity.
I went over to his room to see my dad for the last time. In life, even in the last hours of life, there was a vibrancy, an essential presence. Now, only the form remained. I saw the form, the shell, for what it was. The essence that was my dad was no longer present, at least, not expressed through this body.
In the days that followed his death we arranged for cremation, and then transport back to Hawaii for a memorial service. We had a beautiful memorial service with friends, his church friends, and family. We scattered his ashes in the Pacific Ocean off of Oahu.
– Dan Twelker
“When conditions are sufficient we manifest. When conditions are no longer sufficient we no longer manifest. It does not mean we do not exist. Like radio waves without a radio, we do not manifest.” – Thick Nhat Hanh, Buddhist Monk and Author, from No Death, No Fear
“If today were your last, would you do what you’re doing? Or would you love more, give more, forgive more? Then do so! Forgive and give as it if were your last opportunity. Love like there’s no tomorrow, and if tomorrow comes, love again. – Max Lucado, Christian Pastor and Author