October 30, 2015. The alarm woke me again this morning, which made two nights in a row that Dad, Gale, and I had slept through the night. Silence still made me a little nervous, so I checked to see that Dad was still breathing before I grabbed a cup of coffee and logged on to work. I worked until about 8:00 A.M. and then administered Dad’s morning meds. I then set up my two TV trays and changed out his trach. The bottom part of the trach was pretty crusty and partially obstructed, which was why the suction tube had stopped during his trach care last night. I felt so guilty. I reminded him again that being away from the bedroom nebulizer caused his secretions to dry in his trach, but the importance of the situation didn’t seem to resonate with him. Before I left the room, Dad asked me if I would be leaving and if Gale would take over. I told him that I was working on plans that would enable me to go home occasionally for a day or two.
Today started out pretty well for Dad—in fact, it seemed practically transformative. He was able to pull himself up in the bed with one hand, and his transfers from the bed to the wheelchair were much better. When Tracy, the nurse, stopped by at 10:00 A.M., she said that he was doing well and that his bed sore seemed to be healing. Janet, the occupational therapist, arrived about 90 minutes later and put him through the paces with some arm and core exercises. On her way out, she said that she thought that Dad was progressing very well.
The occupational therapy tired him, so he took a short nap after Janet left. Gale took advantage of his downtime and treated herself to a cat nap. Because Dad had slept so well the last two nights, she was less tired that she had been during her previous weeks here.
He took a couple of short naps during the day, but otherwise, he was up and about for the rest of the day.
It rained like a son-of-a-gun for most of the day. Shortly before dinner, I donned my boots and a rain jacket and ventured outside to read and empty the rain gauge. At the time, I emptied out 5 inches, and the rain showed no signs of tapering off.
Last Sunday I had purchased a couple of pumpkins from the church. Tomorrow was Halloween, which was Gale’s favorite holiday. She usually spent the day with her granddaughters and was a little disappointed that she was missing this time with them. I had searched the internet for her to find some Cheshire Cat makeup ideas for her granddaughter, and she had had a good time experimenting with them last week. I thought that carving pumpkins might make her feel more like she was celebrating. Before dinner, Gale and I spread newspaper over the island in the kitchen and attacked our pumpkins. While we were carving up a storm in the kitchen, a casserole was in the oven, and Dad was taking another nap.
I set up my camera on a tripod and attached the shutter release so that Dad could take pictures. When he woke up from his nap, he snapped a couple of pictures of Gale and me finalizing our masterpieces.
After dinner, we played Oh Hell again, and I won! Miracles do happen. We were finished with cards shortly after 8:00 P.M.
October 31. I had forgotten to set my iPhone alarm last night, but fortunately, an amazing thunderstorm woke me at 3:45 A.M. Beginning when Dad came home, I had been sleeping in the upstairs guest room that my parents dubbed the Vista Room. It has windows on three sides, and blinds are installed on the east side windows. Because my day started when it was still dark outside, I didn’t bother to close the blinds—I didn’t need to shut out the daylight. Consequently, when Mother Nature put on a light and sound show at night, I would wake up. My first thought after the clap of thunder that woke me was that the power had gone off, but I noticed that the power light on the baby monitor was still lit. With everything apparently OK, I thought that I should make coffee—just in case we did lose power. I guess if I could worry about coffee, things were improving around here.
The storm passed through the area pretty fast, and it wasn’t raining at 6:15 A.M. when Dad and Gale were picked up for dialysis by the EMTs. Because it was Saturday, Mom and I ate breakfast together and tried to catch up on some chores around the house. While our lives were revolving around Dad, our household was like a computer. Mom acted as the operating system that managed our primary functions, like shopping, laundry, cleaning, and meal preparation. I kept up with Dad’s appointments, meds, supplies, and trach care. The aides handled Dad’s most basic needs and monitored his safety, and Stan helped with the yard and filled in all of the gaps. He also provided the extra dose of testosterone in the house, which Dad needed.
While Dad and Gale were at dialysis, I drove to the S&W pharmacy to pick up another prescription of an antifungal for Dad and was shocked when the bill came to $399. When I asked the pharmacy clerk about the price, she said Medicare pays for only one refill of the drug each month. She then looked at our records and said that I had picked up this same prescription last week. I left the prescription at the pharmacy and returned home. Mom and I searched the house for the pills, but we couldn’t find them anywhere. We surmised that we must have inadvertently thrown out that prescription when we threw away the bag from the pharmacy. This was our first major system failure since Dad had come home. Mom and I opted to forget about the antifungal—for now. It was less than 45 days ago that we were told that Dad would die from a fungus in his blood. I didn’t like the idea of forgoing this medication. Tomorrow was Sunday and I would see Sue, the dialysis nurse practitioner, at church. I hoped that she might have some suggestions on what we should do. Meanwhile, we felt as if the tricking had started already, and not the treating.
At 11:15 A.M., an ambulance pulled into the driveway with Gale and Dad. Gale was pretty certain that this time beat the all-time record. Dad stopped by his bedroom long enough for his midday meds and trach care and then wanted to get into his office to review some financial paperwork with Mom. At 2:00 P.M., he returned to his room and napped for a couple of hours. While he slept, I made spiced pumpkin seeds from our carving session the previous night. I’m not a big fan of pumpkin seeds, but these were pretty tasty.
After our happy hour and a spaghetti dinner, I decided that we wanted a group Halloween photo, and I herded everyone outside to the front porch.
My parents have lived here for 10 Halloweens and have never been visited by trick-or-treaters, and tonight was no exception unless you included Stan and the mailman (who had had us sign for the delivery of Dad’s medical records, which included a bill for $732, which we considered a trick, indeed).
Because of the holiday, or because Dad was feeling pretty good and we knew that we’d gain an hour of sleep tonight at the end of Daylight Saving Time, we played two games of Oh Hell. I won the first round, and Dad won the second.
At 9:00 P.M. CDT, we started Dad’s nighttime routine. We seemed to be on a roll of good nights. I could always hear the drone of the equipment coming through the baby monitor, so my nights weren’t entirely peaceful, but I hoped that Dad, Gale, Stan, and I could sleep in just a bit tomorrow.
November 1. As we had all hoped, Dad slept until 6:30 A.M. standard time, which meant that we all were able to get that extra hour of sleep. He wasn’t in a hurry to get out of bed and was happy to lie in bed for a while longer. After hearing that the residents of the master bedroom were up and about, I donned my scrubs and went downstairs. Dad was in the bathroom washing his face and brushing his teeth, so I started the two coffee makers in the kitchen—one with fully-caffeinated beans and the other with the decaffeinated ones.
I took care of Dad’s morning meds and trach care, joined Mom and Stan for breakfast, and then Mom and I went to church. Before the church service started, we told Sue about our prescription mishap. She said that she was shocked that something like this had happened to us, and there wasn’t anything that she could do to help us. She added that she didn’t think that Dad still needed the antifungal. Feeling like a total loser, I prayed that Dad would not pay for our mistake.
While Mom and I attended church, Dad and Stan played a couple of games of cribbage. Dad might have been handicapped by a trach, a feeding tube, and his inability to swallow, but he could still beat Stan at cribbage.
I needed to get back to Houston periodically for a day or two. I had contacted a couple of services to see if we could hire nurses to handle Dad’s trach care, but we needed someone three times a day, and I couldn’t figure out how to make it work logistically or financially. I also learned that it wasn’t every nurse that was trained to handle the duties of a respiratory therapist. I had approached Gale a couple of days earlier to see if she would be willing to administer the meds and trach care for Dad while I was gone. I planned to have everything set up and documented for her. Administering the medication was pretty simple with our pill organizer and pill crusher. The trach care was a trickier issue. I was pleased when she said that she would try administering the trach care a couple of times to see if she could handle it.
Gale and I had our first trach care rehearsal after lunch. She did a great job, although I didn’t realize how much I relied on slipping my pinkies under the trach collar to place and adjust the trach dressing. Her fingers were a bit larger than mine, so we had to figure out a different way for her to adjust the dressing. I could tell by the way that she exhaled when she was finished that she had been pretty nervous. It was just over a month ago that I had to do this for the first time and I had been very nervous. Gale had been a caregiver for over half of her life, but this was her first time to suction secretions and change a trach dressing. I didn’t know how Dad felt about Gale stepping in, but outwardly, he was very supportive.
After the trach care, Stan returned to Houston to our home and cats. I had lost track of the times that he had made this trip, and I was always a bit on edge until I received his text message when he reached home. Every person in our little family was a vital player in our healthcare journey.
Mom, Dad, Gale, and I visited during happy hour, and after dinner we played another game of Oh Hell. After the game, Gale and I escorted the big winner to his room. I handled the trach care and Gale crushed the pills, mixed them with water, administered them into the G-tube, and flushed the line. By 9:00 P.M., Dad and Gale were ready for bed. Mom and I set up the ever-important coffee makers for tomorrow morning, and I called Stan.
Gale would be able to spell me in a couple of weeks, Dad seemed to be making good progress, and he had had a few good nights in a row. I was looking forward to another decent night’s sleep. Except for the apparently discarded antifungal pills, we seemed to be progressing pretty well.