February 18, 2016. I knew that Dad had had a very restless night. Because his bed constantly creaked while he fidgeted, I hadn’t had much sleep either. When he woke up at 4:00 A.M., he said that he hadn’t slept much, and I had a pretty good idea why. Today’s trip to dialysis would be different from any other trip because not only would he not have an aide to accompany him, he wouldn’t have an aide stay with him. In addition, Mom would drive him to and from dialysis. I had also spent a few worried minutes awake because I was concerned that he would try to get out of bed. I didn’t realize it at the time, but at 3:15 A.M., he did get out of bed by himself and got into the wheelchair.
Shortly after hearing the wheelchair, I got up, dressed in my scrubs, and logged on to work. It was then that I noticed that Mom was still sleeping and had not helped Dad out of bed. Mom woke up shortly before 4:00 A.M. It was a semi-hectic morning on our first dialysis day without an aide, but Mom and Dad were on their way to the dialysis center in plenty of time for Dad’s 7:00 A.M. appointment.
After Mom returned home, she and I ate breakfast and then she started baking a batch of English muffins. Unfortunately for her, she miscalculated how long the baking would take, and she realized too late that she would not get to the dialysis center at my parents’ agreed-upon time. As she feared, she arrived a few minutes late. Dad was royally annoyed, and he complained ad nauseam about her tardiness. He finally dropped the subject and said that they would have to adjust their schedule. During dialysis, only 1,400 ml of fluid was removed, which seemed low to me. Dad still had a bad congestion, which made me nervous about his fluid levels. I told him that I planned to take him to dialysis this coming Saturday.
During lunch, Dad started backpedaling on his agreement to drink Nepro with his lunch. If he didn’t consume enough calories during the day, he’d have to consume them during the night while he slept. His excuse for not drinking the Nepro today was an upset stomach. After lunch, he took a nap and slept for about 90 minutes. Mom was also tired and fell asleep while sitting in a glider chair in front of the television. I think that they both got some of their best sleep while sitting in front of the television.
When she woke from her nap, Mom called the furniture store and ordered their new bed and scheduled it to be delivered next Friday, eight days from today. My parents had shopped at three stores and had finally settled on a split king-sized bed from Ashley Furniture. Because Dad was supposed to sleep at a 30% incline, they needed a bed that enabled him to sleep on an incline while she slept flat. Before the bed arrived, we’d have to get rid of the hospital bed and move her twin bed back to the guest room.
I stopped work in time for our happy hour and gave Dad some Tussin to help ease his congestion. Although his congestion sounded bad, his temperature, oxygen saturation, and heart rate were all good. We had a relatively light dinner of leftovers and sorbet. Although three-handed Oh Hell isn’t as much fun as when we have more players, Dad wanted to play, and I won.
After the card game, we headed to the bedroom. While Mom prepared Dad’s night time meds, I gave Dad another breathing treatment. We finally got our first aide-less day under our belts by 8:30 P.M. Whew!
February 19. The day started with a knock-down drag-out argument between Dad and me. We argued over his nutritional needs, Nepro, and the amount of fluid to be removed during dialysis. When Mom left the house in tears, Dad and I sat down and had a rational discussion. He didn’t understand dialysis or his body and only partially heard what was said around him. We finally agreed that when I took him to dialysis tomorrow, I would talk to the nurse about how much fluid to remove.
Brenda arrived at 9:30 A.M. for Dad’s physical therapy session. She put him through the paces but commented to me that she was frustrated that he didn’t practice any of the exercises between their sessions. She and I both hoped that Kathleen would extend his time in physical therapy during his upcoming evaluation. Although his strength was improving, we felt that he needed more therapy.
At 11:30 P.M., Janet stopped by for Dad’s final occupational therapy session. Unlike the physical therapy exercises, Dad did practice some of these exercises between sessions because Mom liked to do them with him.
After eating lunch, Dad took a short nap before Kristen arrived for her final swallow therapy session with him. He presented her with a list of foods that he wanted to eat and asked her if he could eat them. Most of the items were planted firmly in the NO column, but he kept trying to get her to agree to rice and nuts.
Now that I knew when my parents’ new bed would arrive, I needed to ensure that we’d be rid of the hospital bed slightly before the arrival of the new bed. I called American HomePatient and left a message with Holly, the branch manager, and told her that we needed to have the bed picked up first thing in the morning on February 26.
During Dad’s plan of care meeting, Dr. Issac said that he would order a referral for Dad to see Dr. Greg Jaffers about fistula surgery. I wanted to get an appointment with the surgeon as soon as possible and texted Sue, the dialysis nurse practitioner, to check on the status of the referral. She replied that Dr. Jaffers’ office would contact us when they received the referral.
After the therapists left, Mom did some shopping and Dad wrote up an article about the Locke Academic Foundation. My father funds a scholarship for political science students at Colorado Mesa University, and he sent some additional information about the scholarship to Shell, his former employer who matches his funding. While the house seemed to be running with a steady rhythm, I worked until 5:00 P.M., which was when I stopped for our happy hour. Dad was still intent on eating peanuts, so I reminded him that for the time being, to reduce the risk of aspiration, he had to avoid eating nuts. When he said that he didn’t know what aspiration was, I was a little alarmed. I couldn’t understand how we could have come this far without him understanding what aspiration was, that it was a bad thing, and how it had nearly killed him.
We didn’t play cards tonight, and I’d be glad when Stan arrived tomorrow.
February 20. I took Dad to dialysis today. The nurse had suggested that they remove 1,600 ml of fluid, but I told her that I thought that his target dry weight was a bit high. His ankles seemed swollen, and I suggested that 1,800 ml might be a better goal, and she agreed.
After Dad was settled, I left the dialysis center and promised to return at least 20 minutes before the end of his session. He did fine during dialysis and didn’t cough until I came to pick him up. Stan arrived from Houston about 20 minutes after Dad and I returned home.
To begin preparing for the new bed, Stan and I moved the twin bed that Mom had been sleeping on from the master suite to the guest room. We then moved the inflatable bed from the guest room to the master suite for Mom to use until the new bed arrived. The bed wasn’t comfortable for long periods, but Stan wouldn’t be here next Friday when we had to clear out the master bedroom, and I wanted to take advantage of his brawn while he was here. Moving the beds now would enable Mom and me to more easily clean up the room in advance of the delivery of the new bed. I hoped that the inflatable bed wouldn’t be uncomfortable for Mom and that she would be able to get some sleep during the coming week.
I helped Mom set up Dad’s meds for the next two weeks, and the guys played a few hands of cribbage. As long as Stan was here, Dad seemed a bit more laid back.
After dinner, we played some more cards and monitored the primary election results on the television. In Nevada, Hillary Clinton won the Democratic caucuses and Donald Trump won the South Carolina Republican primary.
When Dad finally went to bed at 9:45 P.M., he said that he was feeling queasy and he was still pretty congested. I was worried that he might not feel well enough to attend church tomorrow.
February 21. I had high expectations for the day. Although we had stayed up a little later than usual, I had been able to sleep for more than seven hours, which was very unusual for me. However, the day seemed to take a turn for the worse when I entered my parents’ bedroom. Dad had a bit of congestion and he seemed to be in a crummy mood. His attitude was such that I fully expected him to back out of attending church again today.
I was relieved when the four of us got inside the car. I drove to the church and let everyone out close to the church entrance. The accessible parking spots were occupied and the parking lot was surprisingly full, so I had to park quite a distance from the church entrance. I joined my parents and Stan at our regular pew in the church. Soon after we arrived, our church friends who sat in the pew behind us arrived. When I saw Pastor Tom in the sanctuary before the service, I told him that Dad was with us. He stopped by our pew and welcomed Dad in true Tom style. He started the service with a big JOY and announced that after being deathly ill since May, Neal Locke was back. The congregation gave Dad a huge round of applause, and then Tom (jokingly) asked if Dad had brought his offering with him. After the service, many people approached Dad to welcome him back. Before we had left the house for church, Dad had said that he wouldn’t attend church again until he was better. After his warm reception from the congregation, he seemed willing to attend more often. My parents were very fond of this pastor, and before Dad’s hospitalization, my parents had rarely missed a Sunday in church. Getting Dad back to church seemed like another major milestone in his recovery.
When we got home from church, we spent a lot of time working out the arrangement of my parents’ bedroom. After Stan left, we watched the golf tournament, and I tried to get some work done. We spent most of the evening just talking. Dad’s congestion was practically gone, but he let me give him a breathing treatment before bed. Mom was getting better at administering the meds and tube feeds.
I finally got to bed at 9:10 P.M. After four days without an aide, we seemed to be easing into a routine.