It was a Perfect Day
Do what you can, with what you have, where you are. --Theodore Roosevelt
I remember. It was Saturday, October 11th, 2008: the day of our oldest daughter's wedding. It was a perfect day, full of anticipation and the promise of emotion. The weather was ideal, with a light breeze and just a slight chill in the morning that promised to dissipate by afternoon. There was just the right amount of clouds moving in the sky, so the sun could provide its contrast of light and shadow to the ceremony. Family and friends were gathered with us to celebrate this wondrous event. One could not plan a better, more splendid afternoon to have an outdoor wedding. Our girls and their friends got an early start to get tables arranged, flowers and center pieces in place. My wife had all the bridal dresses made, but there were last minute fittings that had to be done. For my part, I had the easy job--fixing the smoked brisket dinner for the after ceremony festivities taking place at our home. When we stood as father and the bride at the beginning of the wedding ceremony, Ashley sternly warned me against crying. She had spent a considerable amount of time putting on makeup that would ruin if tears started to flow. I, the excited and proud father, was able to keep my emotions in check--but, just barely. Oh, I was so proud of my daughter and the woman that she had become. It was a perfect day. I remember. It was also the day my father started dying.
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My parents did not attend the wedding because Dad had been having back issues. Dad and Mom decided that the drive was a bit more than he could handle at the time. "Nothing to worry about," Mom said, "Have a good time. Your father is feeling a little better, so don't worry." I turned my cell phone off just before the wedding began, not wanting to be disturbed. After the ceremony, as we were headed back to the house to begin laying out dinner, I turned my phone back on, almost out of habit. I noticed Mom had left several urgent voicemails regarding Dad, describing what could be best described as a psychotic event. As the old saying goes, it was the beginning of the end, although I did not realize it at the time. Recently, Dad had been complaining more often of his back hurting. Back pain wasn't really anything new, as Dad had several surgeries and incidents that affected his back over the years. Cars wrecks, falling out of attics, and years of heavy lifting. Eventually, the doctor restricted Dad from driving while under medication. Dad also started using Mom's walker to help hold his back straight, easing the pain. I remember. Dad was an Electrical Engineer and worked for companies with government contracts in the aerospace and aviation defense department. He later changed careers and retired as a vocational school teacher. Dad was most proud of his work on the Apollo project, which put a man on the moon. He confided to me that part of the reason he chose vocational teaching in Air Conditioning and Digital Electronics was that he no longer wished to have anything to do with the delivery of nuclear weapons. Dad was willing to make less money in exchange for a clear conscience. Dad enjoyed retirement and spending his final years with Mom, visiting family, and helping others. Dad's involvement with the leadership of his church and home association kept him connected with the community. He loved working in the yard and completing small repairs around the house. One of Dad's hobbies was repairing battery chargers for golf carts. He would repair 4 to 8 battery chargers per month, depending on the season. It was not as intensive as working on guidance systems for missiles, but it was a way to keep using his electrical knowledge. Dad was in the early stages of dementia, and he afraid of what was in store later. Fixing battery chargers was a way to stay sharp, even though he recognized that his troubles driving in unknown areas and with higher level math and calculus problems were dementia related. I remember. When I finally was able to talk with Mom, she said Dad had laid down to rest after breakfast. He seemed all right, just tired and his back was bothering him again. Still overall, he had seemed to be getting better. After a bit, while Mom was playing computer games, Dad got up, entered the office and said, "God does not like you what are doing!" Mom backed away from the computer, realizing something was terribly wrong with Dad's mental state. Dad then went downstairs and out into the yard, stopping at the gate that enclosed the driveway. He did not go any further. Dad shook the gate, although not in anger, more like confusion. As if he couldn't remember how to work the gate. Mom got a neighbor to come over while she called 911. By the time I returned Mom's many calls, she and Dad were in the emergency room. The doctors were still running tests, trying to find what went wrong, so I agreed to come up the next morning. I had no idea what was in store. When I saw Dad, he was in a very confused state. He could not communicate vocally and did not recognize people or his surroundings. I placed my hand upon his and he took my arm with his other hand. His expression was neither happy nor sad, but rather the expression he usually wore when concentrating on a mechanical problem. Dad kept turning my arm this way and that. He was not rough or aggressive, so I relaxed and let Dad have the arm. He was in another world. The doctor told Mom that Dad had a low sodium condition called hyponatremia, and that could cause confusion. Not a worry, as I had been to the emergency room more than once with that condition, though it caused seizures instead of confusion. We just needed to get the sodium levels back to normal and Dad would be right as rain. Dad's condition steadily worsened over the next few days. He became very agitated, almost angry. Dad did not understand directions and was difficult to soothe. He tried to rip out his catheter and pulled his IV out numerous times. A little later, Dad reached up and grabbed at a nurse, hurting her. The doctors were reluctant to give details, but Dad still had a very strong grip. The hospital decided that Dad would need restraints, strapping his arms to the bed. The hospital wasn't very well equipped to handle a patient in Dad's condition. They were in the process of building a psychiatric facility, but it would not be completed until the next year. Dad needed help now. My sister Cindy (an RN) warned that Dad would not last long restrained in his bed, without being allowed to sit up and walk. There was nothing we could do; I could see no other alternative. The doctors were increasing Dad's sodium levels slowly, over the span of a few days to avoid complications. I hoped that Dad would be more like himself afterwards. Instead, Dad's condition continued to worsen, even after his sodium levels were within the normal range. He no longer lashed out at the nurses, but he'd already developed a reputation as an aggressive and difficult patient. Dad was moved into ICU, where he slept with a CPAP machine to help with his breathing and oxygen levels. The years of smoking and subsequent emphysema had caught up to him, even though Dad had quit smoking some time ago. Dad also needed insulin before meals, when before he'd managed his diabetes through diet and oral medication. The list of attending doctors grew to include a neurologist, psychiatrist, hematologist (blood specialist), urologist (for the urinary infection), and the nephrologist (kidney). It seems that Dad's back issues were caused by kidney infection of some sort. So many early signs--and yet everyone missed them. I missed them. To make matters worse, visiting hours were strictly adhered to in the ICU--1 hour in the morning and 1 hour in the afternoon. No other time. That was it. Since we could no longer talk to most of the doctors as they made their rounds, the restricted visiting hours affected the communication we could receive about my father's condition and care. Even the social worker who had an office in the ICU was not much help. Dad's RN tried to facilitate communication between the doctors and Mom, but it was still a problem. Frustrations grew as we continued to not know exactly what should be the next step in treatment. I assumed that Dad would be released to a rehab of some sort and then from there we could gauge Dad's needs for home. I was expecting Dad would come out of this and just be a bit worse off than he was before. Maybe not able to drive, but certainly able to care for himself. Maybe not even able to fix battery chargers, but something better than the cognitive state he was in. None of the many doctors Mom or I talked with during this period would confirm or explain his sudden loss of cognitive acuity; they just kept on referring back to his dementia diagnosis. The nurses, at least, expressed surprised at Dad's sudden deterioration. The doctors did not take the time to explain about dementia outcomes, just continued to say Dad will be better tomorrow. Dammit, he was driving and troubleshooting chargers just last week! I did not understand ! The ICU social worker finally came to Mom and asked where Dad was going to be discharged: to home or a nursing facility. It seemed Dad's doctors had come to the conclusion that there was nothing further that the hospital could do. Dad needed help with his daily care, feeding, medication, and hygiene. However, Dad did not pass the hospital's criteria for admittance into the rehab facility located within the hospital as he could not sit upright in a chair for 3 hours. My sister, Allison, found a rehabilitation center that specialized in geriatric and psychiatric care in Denton and they had an opening. Denton is about three hours drive from Tyler, but closer to family. Although it would still be a long drive, it would mean we could work while helping also with the care of Dad. Our choices, at this point, were limited. Mom saw off the ambulance transporting Dad to his rehab from Tyler. According to Mom, Dad was awake and aware of his surroundings, although he was still not communicative at departure. Allison and I met the ambulance in Denton, but Dad was unresponsive in any way. Another ambulance was called to take Dad to an emergency room in Denton, where Dad was admitted again into the ICU. Dad never did get another chance at rehab. Great. Had we known then (or before) that it was an end-of-life situation, we as a family could have planed accordingly. Hospice could have helped Dad die at his home, just outside of Tyler. Thankfully, the hospital in Denton proved to be much more personable than the Tyler hospital. The ICU unit did not have the same restrictions on family visitors. The communication between the care facility and family was also much improved. Shortly after admittance, the hospital in Denton found that Dad had a 90% blockage of his carotid artery. The surgeons quickly corrected the carotid artery with surgery. Denton also treated Dad's urinary infection and an infection in Dad's mouth and throat that they termed as "thrush" (mettle fatigue-Thanks for the link) . Dad had been tested for carotid artery blockage months before the wedding--this was at a time when Mom had a second mastectomy to remove a "dark spot" on her remaining breast. Mom either forgot or Dad did not tell her of the vascular specialist's findings. For some reason, even Dad's family doctor did not know. Dad must have decided he would let Mom get over her mastectomy before the needed surgery on himself. At least, that's what I keep telling myself. More likely, important information was lost to dementia. Mom and Dad had made it a habit not to share their current medical situation with their children. Dad, to his detriment, was very stoic in that regard. If I had known what I know now about dementia, I would have insisted that Mom and Dad move into an assistive living community sooner. But, as the saying goes, if a frog had wings, he wouldn't bump his ass every time he hopped. I remember. While in the Denton hospital, the doctor ordered a swallowing test (Video Fluoroscopic Swallowing Exam; VFSE) with a speech pathologist in radiology. Dad seemed more calm and cooperative when I was around, so I was invited to sit next to him during the test. The speech pathologist fed Dad some pudding-like substances of different consistencies, while viewing an x-ray video to make sure swallowed food went down the esophagus and not into his bronchial tubes (lungs). At least, that is how swallowing is supposed to work. The speech pathologist's body posture on the final test is seared into my memory. Her body language indicated that the test had turned out bad--really bad. She hung her head down, her shoulders slumped, and she expelled her breath. Her facial expression was one of immense sadness. At the time I did not understand the full implications of the failed VFSE, which would warrant such immense pain I saw emanating from the speech pathologist. Over the next couple of weeks, I learned. The speech pathologist recommended a gastrostomy tube (G-tube). I remember... ...having a conversation afterwards with my older sister Cindy. I was on my way out of the hospital when she called. It was a beautiful fall day, and I had spent the day inside the hospital, shut out from even a window to find some comfort and escape in the outdoors. Cindy was looking for an update on Dad just as I was about to enter the elevator to head home. So I stayed on that floor and sat in a waiting room chair, alone except for welcome sunlight pouring through the windows, contrasting the discussion with my sister. As I think back and put myself in that waiting room, I realize the sun was setting during our conversation. It was a perfect sundown. I was tired, and I think a little grumpy. Well, I know I was grumpy. I was not looking forward to the hour long drive home with the stop on the way to get something to eat, probably another visit to IHOP. I was behind at work and was planning on putting in a full day tomorrow. I was not looking forward to the next 48 hours at all. Cindy and I argued, though not heatedly, about the decision to have a G-tube installed on Dad. I do not think I made the decision in a vacuum, but with the strong advice of the doctor. The doctor was careful in the words he chose, but it boiled down to this: the chances of Dad getting better and going into rehab were good with the G-tube, not so good without the G-tube. The doctor wanted the decision now, so they could insert the G-tube that day. I thought the decision was a no-brainer. I could inform Mom and my sisters later in the day. As I tried to relay this logic to Cindy, she told me about a conversation she had with Dad a few years ago. Mom and Dad were visiting a relative in an Arkansas nursing home who was in late stages of dementia. Dad said he never wanted a G-tube installed on him--just let him die. Cindy eventually let the argument go, as the insertion of the G-tube was done. Dad would either get stronger, or he would not. Dad did not get stronger. I remember. I have my own theory about the end-of-life stages, shaped not only by my experience of stroke, but also by my studies in psychology and rehabilitation. I believe that a person has great control over when he/she dies, depending on what he/she wants. Viktor Frankl's writings greatly influences my thoughts on this. Mom and my sisters would seek my advice because I was once not able to fully communicate with others and Dad was in similar non-verbal situation. I felt like my sisters were looking to me to have a special understanding and to be able to interpret what Dad would want. I did the best I could; we all did. Amid this period of waiting for Dad's health to improve, Allison broached the idea of it possibly being an end-of-life situation with a doctor during his rounds. That was the first mention of hospice care. I remember. Dad's cognitive awareness improved to include some speech from time to time, with various family members. Not everyday, so each time was precious. Dad would ask for coffee and for Mom. He wanted to know who had won the presidential election; when we told him that Obama had won, his response was "Shit." Another verbal interaction occurred during the first meeting and evaluation with a hospice agency. The meeting had started off in Dad's room, but a nurse shooed us out to adjust his catheter. We moved to just out side the room, with the door closed. A few minutes later, Dad yelled, "Steve! Get back in here!" It was evident that Dad wanted to be part of the meeting, though the agent was reluctant to include him. Against the hospice agent's resistance, I said that the situation had now turned into one that we as a family had discussed many times before. Dad would want to be part of any meeting, no matter how gruesome the decisions--not knowing was much worse. Even though that outburst was the last sentence I heard Dad say, his non-verbal communication continued to show that he was attentive until the last day. The plan for managing Dad's death was formed. He was moved from the ICU into a regular, single bed room. Mom was to move into an apartment closer to the kids, and the hospice agency had agreed to set up a hospital bed in the living room. The apartment was not home, but it was a compromise that would allow the most support from the family. Cindy was going to take a leave of absence from work to help Mom care for Dad, with the rest of the family stepping in as needed. The move was set to begin on Thanksgiving day, after lunch. I brought Dad an electric razor on the day before Thanksgiving. Dad was of the mind set that a clean man was not really clean unless it included a close shave. Dad preferred to shave with a disposable razor, but I was more comfortable with an electric--I am prone to spilling blood with a bladed razor. Dad followed my directions as I shaved his beard, careful around the still healing incision where the doctors had fixed his carotid artery. While I worked, I described the plans of the move and who all was coming to see him on Thanksgiving Day. Dad was excited. He had always loved Thanksgiving; it meant being around family, a big meal, and relaxing. I also apologized that it was not his home on the lake that he would be going to, but it was the best we could do. I think Dad understood; I hope so. I remember. The hospital called around 3:00 AM Thanksgiving morning. The nurses reported that Dad would likely not last much longer, as he had a very rough night with his breathing. Shit. I packed my gym bag with extra clothes, not intending to return home until the end. My wife called work and explained; Charlie and I headed back to Denton. Late Thanksgiving morning, with the family gathered 'round, Mom turned off Dad's food pump, finally respecting his wishes that were voiced so long ago. Per doctor's orders, he was still not allowed food or drink by mouth, which I thought was cruel. Dad had so loved coffee, and I thought that was cruel. The nurses tried to get the order reversed, given the situation, but no one was available to review the decision. Dad was alert to everything that was going on around him, and his breathing was improved from the night before. Nonetheless I was still concerned that it was his last day. Dad quit asking for coffee in the early afternoon as his breathing worsened. The hospital staff was kind enough to offer snacks and beverages for the attending family members. Mom missed Dad's passing while she was packing up their home for the move to Garland. Mom's decision was to go ahead with the move since everyone was already available. This involved the able-bodied going back to Tyler and loading the truck Thursday night for the drive to Garland on Friday morning. Then, Mom could again live with the man she loved so dearly. Thanksgiving night came. Normal visiting hours were long over, but we were a crowd of children and grandchildren, sitting in chairs, on the floor, and even standing out in the hallway. Cindy was told of Dad's imminent death and she arrived from Arkansas just in time to say goodbye. Someone got Mom on a cell phone and she told Dad she loved him.... Dad deserved better.... Shit.... I was born on Thanksgiving Day, 1959. When Dad's death was over, I thought that the Thanksgiving holiday had gained a whole new meaning. Thinking back, I remember the anger of Dad dying in a hospital room 3 hours away from home and an hour away from anyone else's home.... Why didn't the hospital in Tyler recommend hospice care? Why didn't the hospital in Denton tell the family to prepare for Dad's death sooner? Why did the doctors wait until the question was asked to talk about this as an end-of-life situation? If we'd had even an inkling that time was so short, we could have planned for Dad to die at home, in the house by the lake.... Thanksgiving.... There was still a lot of anger the first anniversary of Dad's death--less the second, still less the third.... As the years start to pile into years, I am finally beginning to look forward to the holiday as a time for the gathering of the family, as a joyous time again. But, the Thanksgiving holiday will always remained changed.... I will always remember.... I sure miss you, Dad.
Dad and me, Cloudy Creek, Oklahoma, 1984
Memories
Dad, One of my favorite memories is of fishing with you on Cloudy Creek in Oklahoma. That is a special place, reaching back over 3 generations. At Cloudy, you told me the stories of Granddad and his short occupation as a real life cowboy. Granddad would be out a month at a time, all alone with his horse and cattle, carrying little else besides a rifle to shoot small game, beans, coffee, and salt. And when he would get to town, he would buy a can of peaches, eating the whole can on the spot. You told me stories of a simpler time. I received a sense of family history and an appreciation for the little things. You told me of the adventure it was just to get to Cloudy Creek with Granddad in the Model A--all-day journeys with three or four flats along the way, and the roads were so rutted the driver had to be careful not to get stuck on high-center. How you, your brother Robert and Granddad used to float down Cloudy Creek in the homemade boat named the “Goggle Eye.” About the one day when Granddad shot a squirrel, how a huge bass broke the surface as the squirrel fell into the water. The bass must've weighed in about 10 pounds! I remember you telling how you first heard about the Battle of Midway during WW II on a crystal radio on Cloudy. I have my own memories of Cloudy Creek also. I remember the TICKS and the subsequent tick picks at day’s end. I remember the SNAKE, crawling right between us one night, and how that day we found a copperhead (Was it the same day?). I remember how we caught all those BIG fish and how good they tasted fried up at the end of the day. I remember the thunderstorm that woke us up in the early morning and the mad, predawn rush to get to our trotline in time before the rains came. I wonder, is that knife I dropped still at the bottom of the creek? Will some archeologist find it 100 or 200 years from now and wonder about the situation that led up to it getting lost? I doubt they’d appreciate the full history of the knife and know the story that went along with it. I still like to think of Cloudy Creek, but not as just a spot to fish. You taught me to appreciate the family history--my history. And I’ve tried to pass it on to my daughters. Ashley loves to fish and Lisa loves the outdoors. We have a place we go to. It is a place that not only has fish, but future memories for the girls as well. We have seen a SNAKE already, too. I try to pass on the memories I have, the family lore and history that I learned, with love, from you Dad.
Donald Eugene Park
Born March 20, 1931 ; Died November 27, 2008
Post Script: I understand a little more now about dementia. I was getting all the dates and a timeline laid out while discussing the essay with my sister, Vickie, who is another RN and licensed social worker in the family. Vickie reported that Dad's low sodium condition was so extreme that, with his dementia diagnosis, he likely would have never regained the mental acuity he had before the sodium drop. I guess I was not ready to hear that at the time, in 2008. Shit. Post Post Script:: I want to send a special thanks to the editors, my daughters, Ashley and Lisa. Thank you, and I love you, Dad