My final thoughts about Dad

October 6, 2018. Today would have been Dad’s 90th birthday. He had been looking forward to this day, and we had been planning his party for a couple of months. Milestone birthdays were always special to Dad and it had always been important to him that we acknowledged and celebrated these events. He and I had carefully planned Mom’s 90th birthday celebration last year, and he was looking forward to his weekend celebration this year. His niece and her family were traveling from Phoenix to Houston, and we had been discussing menus and seating arrangements before his surgery on August 22, 2018. Instead of celebrating his 90th birthday, today we celebrated a life well lived. I wish that we could have done both. As his favorite daughter, I felt that I had to share what I knew and loved about him with his extended family and friends, many of whom had known him for less than 15 years. I was pleased that I was able to get through my thoughts about Dad without crying. It was what he would have expected of me.

My father was somewhat of a Renaissance Man. At work, he was an accountant and systems analyst. At home, he liked to cook and concoct recipes. He enjoyed traveling and had visited all 50 states and Puerto Rico. He enjoyed sports and the theater and accompanied my mother to the symphony. And something that most people didn’t know, he could wiggle his nose and his ears–at the same time. Dad was the youngest of four brothers, and like his brothers before him, his skeletal system was composed primarily of funny bones. He was a big tease, but could take it as well as he could dish it out. My general memory of my childhood is one of laughter and love.montage1

As most of you know, I’m an only child and my parents and I were very close. But up until I was 15, I was a real Daddy’s Girl. When I was about 5 or 6, he would bring home Winnie the Pooh books from The New York Public Library and read them to me before bed.  He also read me most, if not all, of the Grimm fairy tales, which probably contributed to many of my childhood nightmares. When I got older, he brought home all of the Laura Ingalls Wilder books, which started my lifetime love of reading.

Starting with my 6th Christmas, he took me on annual pre-Christmas excursions to New York City. We rode the bus from our town in New Jersey to the New York Port Authority and then walked what seemed to my short legs like miles. He introduced me to the ice skating rink at Rockefeller Center, the magical window displays on Fifth Avenue, the toy department at Macy’s, and chestnuts roasting on an open fire. We both agreed that the idea of roasted chestnuts was far better than their taste.

montage2I was by his side in his basement workshop, “helping” him with household projects. I have vivid memories of going with him to Two Guys, the Target of the 1960s east coast, to test vacuum tubes when the TV was on the fritz. He, in turn, would play the Barbie board game with me, take me to football games at the local high school, and spend endless winter hours sledding with me on my Flexible Flyer. Our summers were spent at home in our fabulous backyard, getting sunburned at the Jersey Shore, or camping at Lake Wallenpaupack.

My father was very organized and a planner. I was turning either 12 or 13 when my parents let me have a slumber party, and Dad wanted to ensure that we filled every waking moment of the party with activities. To prepare for it, he brought home a book from the library that contained party games. We spent many hours trying out different games to see which ones would “make the cut.” Decades later, when I hosted a party to celebrate my husband’s 50th birthday, my father was there to help plan the menu and the timing of each appetizer. He practically drove me crazy, but the party was a success, in large part because of him. He was a party planner to the very end. As Mom and I were going through some of his papers a couple of weeks ago, we stumbled upon a seating chart that he had drawn for his 90th birthday party, which would have been this evening.

montage3Although he was very organized, his memory sometimes failed him. I recall a summer day in the 1970s when he stormed into the house holding a couple of vases. These were gifts that he had bought for my mother, and he was incensed and a little hurt that they had been squirreled away in the garage. My mother insisted that she had never seen the vases before. It didn’t take long for him to realize that it was he who had hidden the vases in the garage. He had purchased them a couple of years earlier, well in advance of the occasion, and had forgotten about them. Unfortunately, this is a trait that I have inherited from him.

There were a couple of times when his lapse of memory resulted in a B&E. When I was just shy of my 3rd birthday, my parents remarried, which is a whole other story. They left me at home with a babysitter and weren’t far from home when they realized that Dad had forgotten the marriage license. They drove back home, and he sneaked into the house to retrieve the document. I have heard this story several times and have always been appalled that they weren’t alarmed that he had been able to break in without waking me or disturbing the sitter. They also had to break into their Grand Junction house after selling it. They had left some important papers in the kitchen when they went to the closing. Without thinking about it, they surrendered all of their house keys to the new owners. So before they left town on their journey to Temple, they had to break in and then repair the screen that they damaged in the process. I’d say that I wished that I could have been there to see it, but Dad probably would have made me climb through the window.

06-023Both of my parents loved animals, and for my 6th birthday, they let me pick out a puppy at the local animal shelter. As I held the little ball of fur in my arms, my father reiterated to the shelter worker that what we wanted was a “medium-sized, short-haired dog.” The guy pointed to the puppy’s paws and ensured my father that this dog fit the specified criteria. For years we laughed at how Teddy, this medium-sized short-haired dog, grew into a 65-pound long-haired mop of a Disney dog with small paws. Like me, Dad loved that dog and taught the dog all sorts of tricks: he could play Dead Dog, sit up like a human on the bottom step of our split-level house, retrieve slippers from a dark closet, and fetch the morning newspaper. One year, there was a newspaper strike that lasted for many weeks. To ensure that Ted didn’t forget how to retrieve the morning paper, my father wisely tossed an old paper on the lawn during the strike. When the strike was finally over, Dad opened the front door so that Ted could get the paper. Unfortunately, after resuming publication, the paper was especially large and the dog couldn’t get it into his mouth, and he came running back to the house. My father sent him out again, and the dog sniffed the paper and returned. After a couple more attempts at trying to get the dog to pick up the paper, Ted finally gave the paper a good sniff and peed on it. For my parents, the strike lasted one extra day. Fortunately, the paper was much smaller the next day.

08-016When my parents lived in Grand Junction, they lived on Locke’s Flocks, a 15-acre “gentleman’s farm” on which they grew alfalfa and raised sheep. You might not be aware that a ewe will nurse only two lambs. If she has triplets, she’ll kick out one, and it becomes the bum. Sheep farmers must then assume the role of the “mom,” and they must bottle-feed the orphaned lamb.  During their first lambing season, the first or second ewe lambed triplets, which sent my father to the CoOp to purchase lamb formula. He was somewhat miffed when he returned home with a 25-pound bag of dry formula. I remember him saying, “We have one lamb; what the heck am I going to do with all of that leftover formula?” Their ewes were pretty healthy and had lots of triplets, and during their first lambing season, they went through that first bag of formula and most of a second.

When my father was in high school, he wanted to be an architect; however, his high school guidance counselor told him that there would not be much call for architects in the future. He advised my father to pursue something more secure, like accounting. Dad was able to exercise his architecture chops by significantly changing our New Jersey home and by designing three of my parents’ houses and a couple of dog houses.

Dad held several different accounting positions during his 31-year career with Shell Oil Company. During the 1960s, he fell into an opportunity to represent Shell and work on an American National Standards Institute team that developed standards for punch cards. Back in the day, all data entry was done on a punch card, and the shape, size, and thickness of the card were specified by this committee. Punch cards contained 80 columns for data entry, so when the ANSI standards were being developed for reserved columns of data, these data architects had to be careful about how many columns they used. When specifying the date columns, it never occurred to this committee that you might need four columns for the year. Years later Dad said that it would have been relatively easy to add the two digits, but at the time they didn’t consider the 21st century.

In 1976 my mother started a business, and I joined her as a business partner three years later. Dad had always handled our accounting, and after he retired in 1981, he had a desk in our office. One day he came to the office with his nameplate: Neal H. Locke, F.O.O.P.H.O.T.O., which stood for Father of One Partner, Husband of the Other. We all laughed, but his cleverness was nothing new to me.

During the weeks leading up to the year 2000, as Dad was listening to the radio, a couple of on-air personalities were pondering how many Y2K babies would be born. He was shocked when one of them said, “Well, I guess we’ll have to wait to see how many babies are born on October 6,” which was Dad’s birthday. It was at that moment that Dad thought about his place in his family. His brothers were born in 1921, 1922, and 1924. I couldn’t believe it, but at the age of 71, he suddenly thought of himself as an “accident baby.”

montage4I grew up in the days of three TV channels and no Internet, so many of our evenings were filled with board games, like Sorry and Parcheesi. Dad loved card games, and after Stan and I were married, Dad and my mother did their level best to teach us how to play bridge. In the end, Oh Hell became our game of choice and he played it whenever he was in the company of at least two other people. He taught countless friends, our Homecare aides, Stan’s nephews, and my girlfriends how to play the game. Before Dad’s recent hip-replacement surgery, he and I had planned how we would play the game with my cousin’s family during his 90th-birthday celebration.

Although the Locke family has always been separated geographically, family was important to Dad. After his brothers had passed away, my father made a list of his nieces, nephews, and their children, and sent them cards on their birthdays. My cousin, Chris, said it well: “He took the role of being the last of the Locke brothers very seriously.”

When it comes to my Dad, I have only one regret, and that’s that I never got around to taking him to a sushi bar. I think that he would have loved it and we would have had fun, although we wouldn’t have been able to include my steak-loving husband and mother.

montageSmallI’ll miss so many things:

– watching him and my husband Stan play cribbage

– games of Oh Hell

– the way that he said “that smells” when he referred to something that was mine

– the artistry that he used when he made a sandwich. You’d think that the presentation of each sandwich was being judged on a British cooking show.

– the way that he called me Skidge, although I never knew why he called me that

– the way that he was always available when I needed advice, especially financial

– cooking in the kitchen with him

– the way he asked my mother every Sunday morning while making waffles if she had changed the recipe, or if she had given him the right spoon

– the way that he smiled at me as I entered the house

– the way that he looked at my mother

I know that I should be grateful that we had him for so many years. And sometimes I feel greedy for wanting more. But I can’t help it.

I miss him.

We miss him.

He was the best.

Bye-bye, Daddy.

This post concludes this Blog series about my tale of my two parents.

 

Some thoughts about Dad’s life

September 7, 2018. In the days that followed Dad’s death, my brain struggled to handle all of the tasks that come with the death of a loved one. Lucky for me, Dad was very organized. I often joked that if you were to look up the word organized in the dictionary, you’d see his picture. I will be eternally grateful that he provided me with a briefcase full of important documents like wills, life insurance policies, trust documents, investment and banking information, and a cover document that listed contact information for his lawyer and investment bankers.

In addition to this important information, he also left a sealed envelope that was to be opened immediately following his death. This envelope contained two additional documents: his obituary and one titled “Some Thoughts about My Life.”  His briefcase provided me with a blueprint on how to prepare for the end of my life so that I can make my passing less stressful on my surviving loved ones.

Some Thoughts about My Life

1929-neal01Several months before I was born, I was given the spark of life by some type of power that remains a universal mystery. Now, a power, maybe the same power, has determined that that life has run its course, and the spark is extinguished. 

Through the many years, I have likely had more than my share of privileges and advantages, and only ever so few setbacks.

– I have had the good fortune to go to most of the places where I wished to visit;

– Growing up, I was very fortunate to live in a most congenial, caring, and loving family;

1951-01-018– I had the privilege and advantages of an education to the fullest extent of my wishes;

– My working career covered interesting, responsible, respectable experiences and only a minimum of physically challenging burdens;

– I have had the good fortune of good health, and health independence through most of my life;

– I have had the comforts, as well as the enjoyable challenges, in my places to live;

– I had the extremely good luck of living in America through much of the 20th century, which I believe saw the greatest changes in living standards in the history of mankind;

– I had that especially good fortune to experience, as an adult in America, the decade from late 1953 to late 1963, in what I believe was the decade of greatest independence, comforts, person to person respect, freedom, and opportunity of all times past and future in the history of man.

 And finally, my immediate family:

– Melody, who has provided me love and great respect, and has been involved in activities, and realized achievements, I could be proud of. Where appropriate, we did activities together. I fully recognize that she was dealt some unfortunate situations along the way, yet seemed to be able to make the most from them.

1964-01

– And, ESPECIALLY, Mary, to you, with whom I walked the entire road, side by side, and whose love made it all worthwhile. I was privileged to have your support, understanding, and companionship all along the way. You were always more than willing to take an active part in my highly varied and sometimes maybe even questionable undertakings.  You filled my life with all that I could possibly ask.

REGRETS

I’m sure that I have encountered many forks in the road where there was a choice. I’m just as sure I might have had smoother sailing had I turned another direction at times. But, the opposite may also be true. I can recall only very few instances where I might have taken a different and preferred choice. I hope I have not made choices to the detriment of my family. Otherwise, my regrets are mighty few and insignificant. 

AND NOW

I am ready to move forward through that door.

NEAL

I miss him. We miss him.

Recovery failed

September 6, 2018. Yesterday had been a tough day for Dad, and Mom and I were a little anxious when we arrived at his room at 7:50 A.M. As we expected, Dad was sleeping. We noticed that his chin and pillowcase were soiled, and I couldn’t tell if it was pudding or blood. We chatted briefly with the night nurse and learned that she had used pudding as the delivery medium for Dad’s night meds. I wished that she had taken a couple of moments to wipe away the pudding on his face. It was now dry and very difficult to remove. She also said that he had had a very large bowel movement last night, which I hoped alleviated his bloated stomach problems that we had noticed yesterday.

bad2worseFlowerDad’s food tray arrived shortly after 8:00 A.M., but I couldn’t feed him until he was more alert and repositioned in the bed. I used Dad’s call button to summon assistance from the nurse or aide (CNA).

At 8:15 A.M., Audrey (the PA) and Dr. Leung from cardiac electrophysiology stopped by. Audrey had visited yesterday and had told us that Dad’s current heart condition was not contributing to his current situation. She had brought Dr. Leung today to confirm yesterday’s assessment.

At 9:00 A.M., Nakita, Dad’s nurse, and her nursing student came in to administer Dad’s morning meds and reposition him in his bed. I had been unable to rouse him and was open to their suggestions. Nakita tried rubbing his chest, which seemed to annoy him but didn’t wake him. Once again, Nakita was unable to get Dad’s temperature.

bad2worseFlower2Right after they finished taking his vitals, Leslie walked in for Dad’s physical therapy session. Mom, Nakita, and I were shocked when Dad said hello in response to Leslie greeting him. Unfortunately, the interaction ended with hello, and Leslie was unable to rouse Dad enough for him to open his eyes. She said that she would try again later today. Having been unable to administer his morning meds or take his temperature, Nakita left the room. Like me, she had been a tad optimistic when Dad seemed to respond to Leslie.

Dr. Ashley Thomas, the attending physician, entered the room at 9:30 A.M. She said that Dad’s WBC count had moved from the 14-15 K range (slightly high) where it had been for the past few days to 32 K, and she suspected that he was septic. In response to his latest labs, she said that they had started him on a different antibiotic and that they were going to also test him for CDiff. When I asked about the diuretics, she said that nephrology wanted to give his kidneys a rest yesterday but that they might start them again today. Before she left the room, the doctor said that she would probably have Dad’s tunneled PICC line redone in case it might be the source of his infection.

bad2worseFlower3The doctor returned to Dad’s room a few minutes later with Nakita and the nursing student in tow. Dad seemed to be in a lot of distress, which the doctor thought might have been caused by a full bladder. She planned to scan his bladder and provide him with relief if that was the case. I asked about nourishment because he hadn’t eaten much since lunch yesterday. She said that she did not want to insert a nasogastric (NG) tube now because Dad had a lot going on at the moment.

After the bladder scan, Nakita wanted to bathe Dad, so Mom and I went to the 6 North waiting room. We were seated for only a moment when my parents’ friend, Sharon, texted me to get an update on Dad’s status. I told her that he had not improved since yesterday and that he seemed a bit worse.

fabCrummyCross2At 10:30 A.M., while Mom and I were sitting in the waiting room, the doctor sat with us and said that Dad’s distress had not been caused by his bladder, which was bad news because the problem could not be easily remedied. She also said that because the antibiotic required to combat CDiff must be administered orally, she had decided to insert the NG tube because Dad was not able to swallow pills. Although she would not know for 24 hours whether he had CDiff, she needed to start treatment now in case he did. She also said that they would give him some morphine to keep him comfortable.

When Mom and I told her that we would be leaving the hospital for lunch, she advised us to eat here. We found this guidance very unsettling, and I texted that information to my parents’ pastor.

fabCrummyCross2Mom and I left Dad’s room while the nurse inserted his NG tube. Around 11:00 A.M., Sharon arrived with a box of cookies and pastries from a local bakery, saying that times like this required sugar. After waiting for what seemed like a long time, I excused myself and peeked into Dad’s room to see if we could return, which was a mistake. As I opened the door slightly, I saw that a couple of nurses were struggling with Dad as he whimpered and tried to push them away. It was a heartbreaking sight that I’ll probably never forget, although I hope that in time I will. I silently closed the door and returned to the waiting room and told Mom that they weren’t yet finished with Dad.

Around 11:30 A.M., Pastor Brian, the associate pastor, entered the 6 North waiting room. The four of us discussed how it was as important to die well as to live well, but Mom wasn’t willing to admit that Dad was dying.

When Pastor Tom joined us shortly after noon, Sharon left. Pastor Tom insisted that Mom and I eat something, but we weren’t hungry. After rejecting the pastors’ offers of food from various local restaurants, we finally settled on yogurt for Mom and hummus for me from the hospital cafeteria. The pastors supplemented our lunch choices with energy bars and candy. Because of Dad’s potentially contagious condition, the nurse suggested that we eat our lunch in the waiting room.

anotherBadCross3A little before 3:00 P.M., our friends Earl and Marilyn arrived. Before we had learned of Dad’s current condition, Marilyn had told us that they wanted to visit Dad. I didn’t ask them to change their plans because they are such good friends, and I thought that Mom would benefit from their company. The doctor sat with the four of us to discuss Dad’s situation. She said that she had already contacted the Medical ICU (MICU) doctor. Because Dad’s blood pressure was dropping, he would need the type of pressors that the MICU could provide. We had a difficult discussion about whether or not to send Dad to the MICU. Mom felt that we should do whatever we could to help him live. I thought about what I believed that Dad would want. I was not convinced that a good outcome was in his future, even with MICU. If the end of Dad’s life was imminent, I wanted to let him go peacefully. I did not want the last hours of his life to be filled with the torture that I knew that he would endure in the MICU. However, Mom was unconvinced, so the doctor encouraged Mom to sit with Dad for a while. Although I knew that I was right, part of me wanted to be convinced that I was wrong.

Shortly before 3:45 P.M., we returned to Dad’s room where we received another update on his condition from Dr. Thomas. In addition to his other challenges, she said that his hemoglobin was now down to 5.8 (13 being normal), which meant that in addition to pressors to raise his blood pressure, he would need a couple of units of blood. As if this news wasn’t bad enough, she said that he was also bleeding from his intestine. As we stood in the center of Dad’s room, I hugged Mom, and we agreed to start comfort care. I told the doctor that our family was very small and very close. We loved this man dearly, and we now felt that we had to let him go. Through her tears, Dr. Thomas said that she thought that we had made the best decision for him.

As soon as we had made our fateful decision, Nakita and Amber, the charge nurse, started removing feeding tubes and oxygen. They also stopped Dad’s antibiotics and other medications. After withdrawing his medications, they began administering pain medicine and medication to slow his internal bleeding. The nurses cleared the room so that we could sit with Dad in private, promising to check in on us occasionally to see if we needed anything. The doctor said that we could use this time to settle any affairs or issues with Dad, but we didn’t have any. We were communicators and always told one another that they were loved. For the most part, we sat in painful silence and held Dad’s hands and kissed his face.

anotherBadCross2At 4:15 P.M. Drs. Autumn Stratton and Michael Janes with palliative care stopped by. They said that with our permission, they would like to move Dad to the palliative care section of the hospital, where the nurses and staff were trained to work with end-of-life patients and their families. Mom and I agreed that it seemed like a good idea. Dr. Stratton said that she would check to see if they had any available rooms. As strange as it might seem, Mom and I didn’t understand the hospital process of dying and asked to speak with one of their social workers to clarify what was expected of the hospital and us. While Drs. Stratton and Janes were still in the room, Linda Parish, the social worker, visited us for a few minutes.

At 4:55 P.M., I told Nakita that we were leaving for a while. She said that they were cleaning a room in ST4. He would be moved soon, and she would call us with a room number when she knew it. The short ride home was difficult. We didn’t know how long Dad had, but we already felt the void that he would leave in our lives. I had been crying and my eyes felt like I had thrown salt in them, and Mom said that she felt the same way. Alternating waves of nausea and emptiness seem to flow over us.

anotherBadCross4After consuming a glass of wine and some mixed nuts, we decided to return to the hospital. We left home about 6:30 P.M. As I was backing out of the garage, Nakita called to tell me that Dad was being transported to room STC 484. We arrived at the STC area just before the 7:00 P.M. shift change. Dad was still on a gurney that was parked outside of his room. He was breathing when he was brought to the room. After he was moved from the gurney to the bed, the nurses introduced themselves and said that they would return in a few minutes. We sat silently for a few minutes. Looking at Dad, his color seemed so different, and then Mom said that it didn’t look like he was breathing. I put my ear to his chest and couldn’t hear his heart. I took off my glasses and held them over his mouth, but he didn’t produce any noticeable fog. I opened the door and caught an aide as he was exiting the room across the hall. I told him that it didn’t seem like Dad was breathing. He ran down the hall to get our nurse and aide. They both listened for a heartbeat but heard nothing. It seems that he must have passed when they moved him from the gurney to the bed. We stayed in his room for another 30 minutes, and as we were leaving, the hospital chaplain intercepted us in the hall. We returned to Dad’s room to discuss how to proceed once we engaged a funeral home. I gave my father a final kiss and hug, Mom said goodbye to her husband of almost 70 years, and we left the hospital. As much as we hated visiting the hospital, it devastated me knowing that we wouldn’t be returning to see Dad.

I felt a hollowness that I had never known before, and I could only imagine how my mother felt losing the love of her life.

 

Recovery seems to be going from bad to worse

September 5, 2018. Mom and I arrived at Dad’s room at 7:45 A.M., hoping that we’d find that his condition had improved overnight. Typically, nighttime was not Dad’s friend, but I never stopped hoping that history would stop repeating itself. The room was still dark and Dad was sleeping, so I opened the blinds to let in some sunlight and wake Dad—I was ever hopeful. The light had no effect on him, but when Mom and I spoke to him, his eyes fluttered open and he grunted unintelligible responses to our questions.

bad2worseRedRoosterAs crazy as it might sound, during the past four months, “She’ll Be Coming Round the Mountain” had become something akin to our family song. In an attempt to elicit some meaningful response from him, I sang all of the verses, but he still didn’t open his eyes. A couple of times he sort of laughed while I was singing, but it was as if he was laughing at some private joke that only he could hear. I felt powerless and frustrated, and I didn’t know what to do.

Richard, Dad’s nurse, entered the room at 8:15 A.M. I asked him about Dad’s morning meds, and he said that Dad still had a couple of meds that had to be administered orally. Richard and I decided that we’d try mixing the aspirin and Midodrine pills in some pudding and that I would try to get him to eat it, but I didn’t know how successful I’d be. Before he left the room, I asked Richard if he had seen anyone from nephrology this morning, and he said that he hadn’t. After seeing how Dad’s condition had deteriorated yesterday after dialysis, I was anxious to see what they now had planned for Dad.

At 8:30 A.M., Dr. Harris, the neurology resident, stopped by. Once again, we reviewed Dad’s history. He offered a couple of suggestions about what might be causing Dad’s mentation challenges, but nothing new and nothing that sounded reasonable to me. As a matter of fact, Dad had had all these conditions before he had improved just a couple of days ago. Dr. Harris said that he would come back later with Dr. Rasmussen, the attending neurologist.

bad2worseRoosterAt 8:45 A.M., Leslie from PT stopped by. I updated her on Dad’s condition. While she was there, Dad mumbled something about killing the rooster. I explained that I had been singing “She’ll Be Coming ‘Round the Mountain,” which has a verse about killing the old red rooster, and she said that perhaps I needed to sing better songs. She then proceeded to sing the first verse of “You Are My Sunshine.” She had a sweet voice and the look on his face and the intense way that Dad looked at her reminded me of the way his mother looked at her nurse a couple of days before she died in 1986. I’m ashamed to admit it, but I was jealous. I had expended all of my energy trying to get a response from the person who was so much like me, and Leslie seemed to succeed where I had failed. When she finished singing, Leslie was able to get Dad to sit on the side of the bed, but he wasn’t very steady and could not sit without support. By 9:20 A.M., she was finished and I had been able to administer Dad’s morning meds with pudding.

A few minutes after Leslie left, Richard tried without success to take Dad’s temperature using an oral thermometer in Dad’s mouth and under his arm. Using an oral thermometer requires a bit of cooperation from the patient, and Dad was not able to keep his mouth closed or hold his arm close to his body long enough to obtain a valid reading. Richard left the room saying that he would try again later.

bad2worseFlower2At 9:50 A.M. Dad was visited by Audrey, a PA with cardiac electrophysiology. She said that Dad had a 2:1 condition that was usually remedied with a pacemaker. While she was in the room, I asked her if she could access Dad’s lab results. She had access to Dad’s chart and she told me that his WBC count yesterday was 15 and was down to 14 today, which was promising news.

Our friend and my parents’ neighbor, Sharon, stopped by around 11:00 A.M. and stayed for over an hour. Usually, her presence seemed to have a positive effect on Dad, but today he slept through her stay. Mom and I were grateful for her company.

fabCrummyCross2Shortly after Sharon left, Dr. Duran stopped by with her entourage of nephrology fellows and residents. She said that Dad could not tolerate dialysis, which was obvious by the way that Dad’s condition deteriorated after dialysis yesterday. She also said that his kidneys would continue to worsen on diuretics. I told her that it seemed that he was damned if he had dialysis and damned if he didn’t. She agreed that he was in a bad place. Obviously, he would not be having dialysis today, and she said that they would stop by tomorrow.

Dad’s lunch was delivered at noon, and a couple of moments later, Rachel, the dietitian, arrived to see how Dad was doing with some of his dietary changes. I told her that I had appreciated the thickened liquids with rice. Today’s tray was a good example of the positive dietary changes. His tray contained some brown rice and a bowl of puréed lentil soup. After I combined the rice with the soup, I was able to wake Dad and feed him the entire bowl of the mixture.

I felt better because Dad had eaten a good lunch, so Mom and I left the hospital at 12:25 P.M. for our lunch at home. We returned to Dad’s room at 2:00 P.M. Dad was still in a strange place mentally and spent much of the afternoon talking to himself. Before lunch, he had been talking to us, but we hadn’t understood him.

Today was changeover day for the attending physicians. Typically, we didn’t see the new doctor until the afternoon of the first day. Mom and I hoped that we hadn’t missed seeing the new attending physician or the neurologist while we were gone.

anotherBadCross3At 3:00 P.M., Dr. Ashley Thomas, the new attending physician, entered Dad’s room. She attributed Dad’s mentation problems to delirium and said that there was an outside chance that the antibiotic that Dad had received earlier was causing the delirium. Evidently, it can cause problems in about 2% of the population. They had since changed to a different antibiotic. I told her that Dad had had delirium before, and this didn’t seem like delirium to me. Plus, he had been doing well and the change seemed very sudden to me. She asserted that patients could experience delirium suddenly, but I was not convinced. When I asked her about Dad’s future and whether she envisioned him going to a place like the Scott & White Continuing Care Hospital (CCH) or the Meridian, she said that she didn’t know whether the Meridian could care for him and that someplace like the CCH would be better. When I told her that we had not had good experiences with the CCH, she said that we had other options, which further exasperated me. The closest continuing care hospital was approximately 40 miles from here, which wasn’t an option for us. I hadn’t been happy with this visit and was glad when the doctor left the room.

At 3:30 P.M., the respiratory therapist came by to check on Dad’s oxygen saturation, which was now at 100%. Because she thought that he was doing better, she decided to reduce his oxygen flow from 4 to 2 liters.

At 4:00 P.M., Richard came in to change Dad’s gown and reposition him in the bed. For the next couple of hours, we tried with little success to get Dad to engage with us, but he spent most of the day sleeping. When he did try to respond to us, we couldn’t understand him.

I never liked to leave for home before Dad’s dinner tray arrived, and today it didn’t arrive until 6:30 P.M. I couldn’t get him to eat much and his breathing seemed pretty labored, but I fed him the broth from one bowl of the chicken noodle soup.

bad2worseConeBefore Mom and I left his room, we noticed that Dad was totally engrossed in eating an unseen ice cream cone. His eyes were closed and he seemed happy as he carefully and methodically licked the ice cream from the cone. It was one of those moments that made you want to laugh and cry at the same time. I wished that he could have been as involved with us as he was with that ice cream.

I couldn’t find a nurse or aide, so I left a note on Dad’s bedside tray that informed the staff of his current status and our departure, and Mom and I left for home shortly before 7:00 P.M.

 

Another very bad day of recovery

September 4, 2018. Yesterday had been rather a mixed bag for Dad, and Mom and I were a bit anxious to see him and see how well he fared during the night. I hoped that he had slept through the night and that we would find him as alert as he had been yesterday morning.

anotherBadCross3However, when we arrived at Dad’s room at 7:45 A.M., it was empty. Thinking that something bad had happened to Dad, Mom became very upset. Because his bed was missing, I assumed that he had been transported somewhere for a test. When I found Nakita, Dad’s nurse, she said that he was in dialysis. I began a slow burn. Yesterday, when the physical therapists left, they said that Dad should be able to get out of bed today and sit in a chair. Dialysis this morning would mean that he would not be in any condition to have physical therapy today, so he would not be sitting in the chair, which we so desperately wanted. I had been very clear with the nephrologists that I didn’t want Dad to have dialysis in the morning. Also, Dr. Duran, the attending nephrologist, told us yesterday that they would start Dad on a Monday-Wednesday-Friday dialysis schedule. Today was Tuesday. Evidently, Dr. Tanner, the nephrology resident, had visited Dad’s room at 6:45 A.M., and Dad was taken to dialysis shortly after the shift change, at 7:05 A.M.  I was furious and asked Nakita to page Dr. Tanner and have him come to Dad’s room.

While I was stewing about Dad’s schedule for the day, Nakita shared some information that completely deflated my anger at nephrology and hopeful feelings about Dad’s progress. It seemed that Dad had not had a good night. According to the night nurse, Dad had been very confused and had pulled off all of his bandages. And when Nakita arrived to work this morning, she found Dad’s hospital gown on the floor.

anotherBadCross1Mom was out of her heart medication and I wanted to pick up her prescription from the pharmacy before the hospital parking lot filled up. When we hadn’t heard from the nephrologist by 8:30 A.M., we left the hospital to pick up her Eliquis. As we were leaving, we encountered Dr. Hunt, the attending physician, as he was exiting from a crowded elevator. As we exchanged pleasantries, I expressed my concerns about Dad’s mentation and told the doctor that we were running an errand and would be available to speak with him soon.

During the past week, two of the four elevators in the north tower had been out of order. Today, only one elevator was operational. Needless to say, lines of visitors and employees queued up for long waits. Considering that a wheelchair was often used in the elevator, the number of other passengers was not always as many as expected, contributing to the wait time. According to the hospital personnel who worked on the ground floor and had received the brunt of complaints, they had been complaining to their management about the situation for over a week. I was already in a bad mood, and this minor inconvenience was my tipping point. When Mom and I eventually returned to Dad’s room at 9:00 A.M., I grabbed my phone and initiated the following Twitter exchange with the hospital:

My father has been a patient in the north tower of Baylor Scott & White Hospital in Temple since August 27. At least 2 of the 4 elevators have been out of order the entire time. Thanks @bswhealth_templ

Thank you for sharing, Melody. We have passed your feedback on to the appropriate department for further review.

People are getting pretty annoyed that only one elevator is working. You’re just shy of an angry mob.

Thank you for sharing this feedback with us, Melody. Our Maintenance team is aware and currently working on the elevators. We appreciate your patience.

I don’t know if the Twitter exchange helped, but within a couple of hours, another elevator was back in service.

fabCrummyCross2Dad’s dialysis session ended at 11:00 A.M., and he was back in his room by noon. Unlike his condition a couple of days ago, he was far from alert when he was returned to his room, and I could not rouse him. By 1:15 P.M., his condition had deteriorated. He had not eaten for over 24 hours, and Nakita had not been able to obtain his temperature from his armpit or by mouth, and after she consulted with the doctor, she called for a RAPID. Once again we heard the ominous announcement: Rapid response medical alert; in-patient room 634 North. Within moments, Dad’s room filled with 6 North personnel and some familiar faces, including Gail, the RAPID nurse, whom we had first met on August 23. Dad’s blood pressure was 84/50, and they had to take his temperature with a rectal thermometer, which showed that his temperature was very low. To increase his internal temperature, the doctor ordered a Bier Hugger, but until it arrived, they piled warm blankets on him.

When the room cleared, Dad’s eyes were open. I tried to get him to look at me, but he would only stare to his upper right. I kept trying to get him to engage with me, but I couldn’t get much more than a grunt. I kept telling him to say “Hi Mel,” but he only grunted. I had not seen anyone from the neurology team, and I was very concerned that he could not interact with me.

anotherBadCross4At 2:00 P.M., I went downstairs to the cafeteria to get Mom something to eat. When I returned to Dad’s room, he was under the Bier Hugger. His blood sugar, which had been very low during the RAPID, was now up to 104. While standing next to his bed, I thought that his belly seemed bloated. When I mentioned it to Nakita, she agreed and said that she would speak with the doctor about it. When the nurse left, I tried to get Mom to try the hummus, without much success. She had never had it before and was less than impressed with one of my favorite foods. She was a fan of cookies, and I was able to coax her to eat a chocolate chip oatmeal bar. I could understand how the events of the morning would affect her appetite, but I couldn’t have her getting sick.

At some point, Dad’s RAPID was closed and reopened, but they closed it for good shortly after 2:30 P.M. It was clear to me that his condition was still very fragile. His inability to look at me and respond had rattled me and I was having a difficult time staying strong for Mom.

anotherBadCross3At 2:55 P.M., Dad was transported to the x-ray department for a CT scan of his belly and head. As he was wheeled back into his room 25 minutes later, Leslie from physical therapy stopped by to tell us that a nephrologist had called her this morning to tell her that Dad would be dialyzed today. She had adjusted her schedule so that Dad would be her last patient, but after seeing him now, she said that they would try to see him tomorrow.

At 3:55 P.M., Dr. Hunt stopped by to give us an update on Dad’s condition. He said that Dad’s brain CT scan was normal and that his lactic acid levels were good. In short, all of Dad’s vital signs had significantly improved since this morning. Before he left the room, he reiterated that they would do everything necessary to keep his heart beating, but nothing to restart it. I didn’t think that this discussion was necessary, but the doctor said that he wanted to have this information in advance of any potential problems. He said that he would return when he had the results of the belly CT scan.

At 4:00 P.M., because Dad was not able to take his medications orally, Nakita administered his afternoon medications intravenously.

anotherBadCross2Dr. Hunt returned to let us know that the CT scan of his belly didn’t show anything bad; however, it did show that he was retaining fluid from his liver that was associated with his cirrhosis. The day after his surgery I had been told that his liver enzymes were elevated but I wasn’t aware that he had cirrhosis and asked about the long-term effect of this fluid. He said that at some point, the fluid would need to be removed; however, Dad had too much going on now to think about such a procedure at this time.

After all of the professionals had left the room, I started singing “She’ll Be Coming ‘Round the Mountain” to Dad. It was a song that Mom and I sang when Dad practiced walking at home. Every so often, he would mumble “driving six white horses” or “kill the red rooster.” He was almost unintelligible, but the nurses, Mom, and I could tell what he was saying. Sometimes he made a sound like a little laugh, but it wasn’t in response to anything that we could understand. The person that we loved seemed so very far away.

anotherBadCross4By 5:00 P.M., Mom was exhausted and wanted to go home. We had a simple dinner of sandwiches and baked beans, a meal that would not have sufficed for either one of our husbands. Just as we finished eating, there was a knock at the door. Our neighbor, Jim, had arrived bearing brisket and potato salad. Although the meal was a few minutes late for tonight’s dinner, we would eat it tomorrow.

About an hour after dinner I returned to the hospital so that I could be there during the shift change. Dad was sleeping, and while I was in his room, Nakita started his nighttime dosage of antibiotics and albumin. She said that she had just received the orders for new meds for Dad and she wanted to administer them before she left for the day. She added that his vital signs hadn’t changed since we had left for dinner.

I left the hospital at 7:15 P.M. This had been a depressing day, and I was nervous about the next 12 hours. On the way home, I stopped by HEB for some much-needed ice cream and wine.

 

A fabulous start to the day, but what a crummy finish

IMG_5954 (1)September 3, 2018. I arrived at the hospital at 7:30 A.M. Dad’s breakfast tray was sitting on the bedside table, but the meal seemed rather skimpy. When I compared the contents of his tray with the slip that accompanied it, I saw that he was missing the cranberry juice, cereal, and coffee. Toshia, Dad’s aide, contacted the kitchen and requested that they bring the missing items. While she was in the room, I asked her if she could get Dad repositioned in his bed so that he could eat. She said that she would request assistance from Isabel, Dad’s nurse.

At 8:15 A.M., just as Isabel and another nurse had just finished repositioning Dad in his bed, Angie and Beverly from physical therapy arrived. During the few minutes that it took for them to rearrange the furniture for Dad’s session, the missing items from his breakfast tray arrived. Once again, Dad’s breakfast would cool off before he could eat it.

fabCrummyCross4Dad was alert, cooperative, and had a great physical therapy session, and Angie said that tomorrow he should be able to spend time sitting in a chair. At the end of this session, I was feeling very positive and was encouraged about his progress. Mom and Stan arrived at 9:15 A.M., just as Angie and Beverly were wrapping up Dad’s session. I was disappointed that they had missed Dad’s best physical therapy session since his surgery.

I reheated Dad’s coffee and laid out his meal for him. He was able to hold the cup and drink his coffee without any assistance from me, and I was thrilled that he was also able to hold his dish of pears and eat them with a spoon without my assistance.

fabCrummyCross1At 10:30 A.M., the nephrology team arrived. They said that Dad’s lab results were good and that he had cleared 650 ml fluid in the last 24 hours. I was pleased that they were satisfied, but based on previous conversations with other nephrologists, I thought that they would have wanted him to produce more urine. Regardless, I was pleased that the day seemed to be progressing well.

Dad had been very alert and his dexterity had improved, so at 10:45 A.M., he and Stan decided to play a game of cribbage. For the past few years, the guys enjoyed their cribbage tournaments, most of which were won by Dad, and they were eager to play again. However, holding cards was a bit more difficult for Dad than holding cups, silverware, and dishes. After a bit of fumbling, Dad told Stan that he was also having trouble seeing the 15s, so the guys abandoned their plan for a game of cribbage before Stan returned to Houston. I think that I was more disappointed than they were. Being able to play a game of cards would have been a significant milestone for Dad. Truth be told, it was a milestone that I needed.

When Dr. Hunt, the attending physician, came by a few minutes later, he told me that he had had the nurse give Dad something last night to help him to sleep, and he wondered if it had worked. Because Dad had been so alert this morning, I assumed that he had had a good night’s sleep. Unfortunately, while the doctor was in the room, Dad became very drowsy and couldn’t tell the doctor anything other than that he was in Temple. It was uncanny how Dad seemed to be sleeping or very drowsy whenever the doctor was present, and I wondered if it was a Pavlovian response.

5364Dad was awake and alert when the respiratory therapist arrived with a spirometer, a little gizmo to improve his lung capacity. He was supposed to inhale for ten breaths, but he fell asleep after the eighth breath while holding the spirometer in his hand. The timing was unfortunate because he now needed to take his morning meds. Had Isabel entered the room before the respiratory therapist, Dad might have been able to swallow his pills with Nepro, but now I was afraid to give him any liquid. Isabel suggested that we crush the three pills and administer them with pudding, which worked. He complained about the taste, so I had him eat a couple more spoonfuls of pudding to get rid of the nasty taste of pills in his mouth. Within moments he was sleeping again.

Today was Labor Day and Stan wanted to return to Houston ahead of the post-holiday traffic, so he, Mom, and I left the hospital at noon. Dad’s lunch arrived before we left, but I doubted that I could get him to eat it now. I left it on the bedside tray and planned to have him eat it when I returned.

oximeter2Mom and I were back at the hospital by 1:00 P.M. I reheated Dad’s lunch and called for the nurses to reposition him in the bed so that he could eat. While they were in the room, he kept trying to remove his oximeter and we had a difficult time trying to redirect his attention. When I was finally able to feed him, I could not get him to open his eyes. I tried shaking him, shouting in his ear, and singing, but nothing worked. By this time, it was 1:40 P.M. and I gave up trying to get him to eat his lunch.

Mom and I were still sitting in his room at 2:40 P.M. when Isabel and Toshia came in to bathe him. Until they were finished, Mom and I sat for about 45 minutes in the 6 North waiting room. While we were there, we met a couple of brothers, one of whom had recently recovered from pancreatic cancer. He was now recovering from a minor infection and was being released tomorrow. His was a fabulous story that lifted our spirits.

fabCrummyCross2At 4:30 P.M., the nurse came in with Dad’s afternoon pills, but he was very drowsy and I was pretty sure that we wouldn’t be able to get him to swallow them. She grabbed some chocolate pudding from the kitchen and mixed in the three crushed pills. Fortunately, I was able to get him to swallow a few more spoonfuls of the pudding concoction, ensuring that he got the required dosage.

Fifteen minutes later, the respiratory therapist returned. I told her that the breathing thingy that she had brought Dad earlier had been knocked to the floor by someone in housekeeping. She left the room and brought us another spirometer, although I wasn’t confident that it would get much use. I was pretty sure that we had a couple of these thingys in the bathroom closet at home, still in their original packaging.

fabCrummyCross2Dad’s dinner arrived at 5:45 P.M. He was scrunched down into his bed, so I used the call button to summon assistance to reposition him. After just a short wait, Isabel and Toshia arrived and took his vitals and repositioned him in the bed. He had been talking nonsense for a couple of hours, which continued while they were in his room. Try as I might, I was unable to rouse him enough to feed him.

It was getting late, and I didn’t think that more time with Dad would yield any different results. I used the call button again to summon the nurse so that I could speak with her before I left, but after waiting for more than 15 minutes, I started wandering the halls in search of a nurse or aide. I finally found a nurse and told her that I was leaving and that I had been unable to feed Dad. She said that they would try and I reminded her that because he was an aspiration risk, he needed to have both eyes open when eating.

fabCrummyCross3I also told her that I wanted to speak with a neurologist tomorrow. It seemed to me that Dad had changed dramatically around noon, and his current condition seemed different from anything that I had experienced with him during this or any previous hospital stay. It also concerned me that the change had seemed sudden and occurred when he was using the spirometer. She said that she would add a note to Dad’s chart.

fabCrummyCross5Mom and I finally left the hospital at 6:30 P.M. I had been so happy and optimistic about his progress this morning, but now I was very weary, discouraged, and concerned. On the way home, we saw a rainbow over the hospital, which I hoped was a good omen. After Dad’s sudden change, I was open to all signs of good luck.

 

 

Shaky progress, but still recovering

September 2, 2018. Sunday mornings at the hospital are usually pretty quiet, especially in the parking lot. On Sunday, I can get a decent parking space, unlike most other days. However, today while I was walking from my car to the hospital, the usual quiet was disrupted by a hospital employee who was chasing and calling after a resident “runner.” During the day, you periodically hear announcements about missing patients who wander away from their rooms, but rarely have the patients left the premises. I tried to imagine the backstory to this event that broke the monotony of the walk into the hospital.

shakycross2I arrived at Dad’s room at 7:45 A.M. His breakfast tray had arrived and was on his bedside table. He was still sleeping, but I was able to wake him easily. He finished about half of his breakfast before the physical therapist arrived. I never knew if we could expect to see a physical therapist on the weekend and I was pleased that Dad was being seen by a therapist during the holiday weekend. The session got off to a rocky start when the therapist accidentally dumped the contents of Dad’s urine bag on the floor. While she and the nurse cleaned the floor, which took a little over five minutes, Dad was able to sit without assistance on the side of the bed. The therapist was hesitant to have Dad stand up because his blood pressure was a bit low, but eventually, she decided to let him try. After standing, she retook his blood pressure, and it had elevated into the normal range. Because an aide didn’t assist her today, the therapist did not have Dad walk. Instead, she had him sit and stand a couple of times and then do some leg exercises on the bed.

After therapy, Dad was alert enough to swallow his morning pills of Midodrine and aspirin with juice.

This morning, Dad was fixated on dreams from last night about his father’s surgery and “what they’re doing to him at this place.” It was a confusing conversation because his father had died of a pulmonary embolism in 1957. I was able to get him to drink a couple of cups of coffee, hoping that it might help him clear his head and to stay awake.

shakycross3Unfortunately, the effect of the coffee was short-lived, and Dad fell asleep moments before Stan and Mom arrived. Although he was awake when Dr. Hunt, the attending physician, arrived, he was very groggy. When the doctor questioned Dad about why he was in the hospital, he said that he was in Temple because of a broken leg, which was closer to reality than his answers yesterday.

I, not to mention his night nurse, was concerned that Dad’s biological clock seemed reversed. From what I had heard from the nurses, he was awake most of the night and then slept during the day. When I asked the doctor about what we could do to switch Dad’s inner clock, he said that he would check with neurology. I told the doctor that at home, Dad often took ½ of a Simply Sleep pill (which was ¼ of the recommended dosage), so they should exercise some caution when prescribing sleeping medication. The doctor said that he would check the ingredients in these pills and note on Dad’s chart that they should start Dad on low dosages of any sleeping medication.

Mom and I left for church at 10:20 A.M. After church, Stan told me that Dad had been awake about 75% of the time that we were gone, but that he was still a little confused.

shakycross3Nephrologists base many of their healthcare decisions on the amount of liquid gold (urine) collected during a 24-hour period. When the nephrologists arrived for their morning rounds, Stan told them about the physical therapist’s mishap with the urine bag. However, they weren’t concerned and said that after taking diuretics yesterday, Dad had voided a liter of urine, so they would not dialize today. Instead, they would check his lab results tomorrow before dialysis to see if his kidneys were removing the toxins and electrolytes in his blood. Because Mom and Dad didn’t like the Scott & White dialysis center, we would need to arrange for Dad to receive dialysis at another location—one that wasn’t conveniently located near their home. This refusal to use the local dialysis center was an inconvenience that they would regret and that I wished that we could avoid. In any event, the nephrology team planned to get Dad started on a Monday-Wednesday-Friday schedule that would continue following his discharge from the hospital.

Following our lunch at home, Stan, Mom, and I returned to the hospital at 2:30 P.M. Dad was sound asleep, but I was able to rouse him for about two seconds. I had been looking forward to this weekend so that Dad and Stan would have time to visit. Dad’s inability to stay awake was torpedoing my plans, and I hoped that the doctor would prescribe something for Dad that would enable him to sleep tonight. Tomorrow was Labor Day, and I wanted the guys to have time to visit and perhaps play cribbage.

shakycross2At 3:00 P.M., Kayla, Dad’s nurse, set up the creatinine test that had been ordered by the nephrologist. Before she was finished, Maryline, Dad’s aide, entered the room and said that she was going to bathe him. I told her that his toothbrush was in his travel shave kit that was in his closet, so she said that she would also brush his teeth. While Mom and I waited in the 6 North waiting room, Stan drove to Starbucks to get us some coffee. Kayla came and got us at 3:45 P.M. When I went back to Dad’s room, I noticed that his teeth looked shiny and clean.

shakycross3He slept for most of the afternoon but woke up for dinner, although he was still very confused. He kept saying that something was different. We couldn’t figure out what he was talking about and what was different. I wished that he could have given us some clue as to what he was talking about. After he finished eating, Mom, Stan, and I returned home. I said a quick prayer that Dad would get a good night’s sleep. He seemed to be progressing well, but I wanted him to be more awake during the day.