November 15, 2015. Dad had a restless night, waking up a few times during the night. At 8:45 A.M., he was ready to get up. Before Gale helped him transfer from the bed to the wheelchair, I administered his morning meds and trach care. Gale had done a great job of taking care of Dad while I was in Houston, but she was glad to have me back in Temple to resume the trach care. After I left the room, Dad wheeled himself into the bathroom and proceeded to shave and wash up. He seemed to have an upset stomach and didn’t get out of his room and into the kitchen to visit with us until 10:00 A.M.
As Mom and I were driving to church, I told her that I had read the log book that the aides kept about Dad, so I knew about Dad’s fall yesterday. I was pretty irritated that she had decided to withhold this information from me. I was very invested in his care and recovery, and it disturbed me that my parents would choose to keep this information from me. She agreed that they would not withhold this type of information from me again and said that she would talk with Dad after lunch. However, we both hoped that there would be no next time.
While we were at church, Dad told Gale that he was tired and that he wanted to lie down. He also complained about some tightness and soreness in his back. Gale thought that he also seemed a little depressed about yesterday’s fall in the bedroom. The home-patient hospital beds had only two side rails, which did nothing to keep Dad in bed. At one point, I had used pipe cleaners to attach a couple dozen little bells to four chairs that we pushed up against the sides of Dad’s bed. He still might have been able to escape from the bed, but we hoped that the bells would wake at least one of us during an attempted escape. The chairs and bells had worked for about a week but were less effective as Dad got stronger. One side of the bed was partially obstructed because of the oxygen concentrator and nebulizer. While Dad napped, Gale moved the wheelchair to the other side of the bed and locked it in place, which made that bad boy practically impossible to move.
After Mom and I returned home from church, Gale told us that Dad had diarrhea. According to her, it had started last night and had become progressively worse during the day. I decided to call the Home Care office and request a visit from the on-call nurse.
After lunch, Dad read the newspaper in his room and rested until the nurse arrived at 4:20 P.M. She said that Dad’s vitals were great and said that he didn’t have a fever. When she learned about the fall (During every visit, providers ask if you’ve had any falls.) and the difficulty that Gale and Mom had had getting him up off of the floor, she said that we could always call for a nurse for assistance. Regarding the reasons why we had called for a nurse, she could only speculate about the cause of his diarrhea and back pain.
Now that the fall was common knowledge, Mom and I spoke with Dad for a few minutes, and I implored him to ask for help when he needed to get up. He restated that he didn’t want to be a bother, and I told him that we had hired someone whose sole purpose was to be bothered by him. He agreed to ask for help going forward.
He seemed to feel a bit better and joined us for happy hour.
Mom was the big winner at cards this evening. It had been a long day, and we were all tired. We started our nighttime routine at 7:45 P.M. and by 8:30 P.M. we were all in bed.
November 16. Dad had a tough night, starting at 1:00 A.M. This bout of diarrhea had a firm grip on him that was becoming progressively worse. He eventually got out of bed and ready for the day around 8:00 A.M. Gale was able to convince him to exercise with the core weight, but by 10:00 A.M., he wanted to return to his room to lie down.
Shortly after noon, Tracy, the nurse, stopped by for Dad’s routine Monday checkup. Similar to yesterday, Dad’s vitals were good. I asked her if we could give Dad some Imodium, but she said that she could not give advice about medications. I finally asked her what she would do if she was in my position, and she said that she’d give her father half of a pill.
I went to Walgreens and purchased a box of Imodium. A standard dosage was two pills, so I wasn’t concerned about crushing a half of a pill and administering it into his G-tube. I wouldn’t have thought that such a small dosage would have helped much, but he seemed a little better for the next five hours.
At 2:00 P.M., the doorbell rang, and we opened the door and met Kristen, the speech pathologist. When Dad wheeled out to meet her, she introduced herself to Dad as the speech therapist. He said that that was a shame because he hadn’t prepared one. To her credit, she laughed. The session might have been for Dad, but I learned a lot about our complex system of muscles that enables us to swallow. She had Dad work through a couple of throat exercises and left a sheet of exercises for him to practice between sessions. She also said that he could eat crushed ice anytime that he wanted.
After Kristen left, Gale helped Dad use the walker to walk from the kitchen to the laundry room, a distance of about 12 feet. He walked slowly, but his steps were steady and controlled. He stayed up for the remainder of the day, resting only while Mom, Gale, and I ate dinner.
After dinner, Dad felt like playing cards, which was our litmus test for how well he was feeling. By 7:30 P.M., I had won, and we were moving Dad toward his bedroom to start the nighttime routine.
My room was the only room on the second floor, with windows on three sides. On most nights, I could see the moon from my bed. We were expecting some storms through the area in about six hours, and the wind was already howling around my room when I turned out my light.
November 17. The storms that were predicted to start at 2:00 A.M. started two hours late, just around the time that I woke Gale and Dad. Dad had had a great night’s sleep, but he still had not recovered from the diarrhea. I hated to send him away for 4-5 for dialysis hours with these symptoms and hoped that another 1/2 Imodium would help him. Fortunately, the torrential rain that started at 4:00 A.M. had let up some when the wheelchair transit van arrived. The rain ushered in a cold front, and the temperature had dropped almost 20 degrees between the time that I woke up and when Dad and Gale were picked up.
Fortunately, they didn’t have to wait too long after dialysis for a ride, and Dad and Gale were home by 12:15 P.M. He was pretty wiped out and wanted to take a nap. By 12:40 P.M., he was back on the bed, hooked up to the tube feed and moist air. I administered his trach care and a portion of his midday meds. I became distracted by some shiny object and forgot to administer his antibiotic. Less than five minutes after I left his room, he was sleeping. While he slept, I called Sue, our friend and nurse practitioner at the dialysis center, to see what else I could do for Dad. She said that I could safely give him two pills, the recommended dosage of Imodium.
By 4:00 P.M., Dad was awake but was still very sleepy. Before he joined us for happy hour, I crushed two Imodium tablets, mixed them with water, and inserted them into his G-tube.
While Mom, Gale, and I enjoyed assorted beverages, Dad ate some crushed ice. A little bit of crushed ice went a long way, but at least he was getting a chance to practice swallowing.
Dad took a short rest in his room while Gale, Mom, and I ate dinner. Although he wasn’t feeling his chipper self of a few days ago, he felt well enough to beat us at cards.
While Gale and I were in Dad’s room running through his nighttime routine, Gale found a little scorpion on the floor near her bed. Gale was one of the most fearless women I knew, but she screamed like a little girl when she saw the critter. We had barely disposed of it when she encountered another one crawling on the bathroom floor toward the bedroom carpet. My parents had found scorpions in the house in the past, but I don’t recall ever seeing one, and tonight we saw two.
Although many things in our lives were uncertain, one thing was very certain: Gale would never walk barefoot in the bedroom again.
November 11. Dad had another good night. I might have heard him cough twice. At 7:45 A.M., I was between meetings and wanted to administer trach care and meds, but Dad was still in bed and didn’t want to get up. I told him that he was a lazy bones and that we’d have to make “
Before Stephanie’s car left the driveway, Brenda pulled up behind her for Dad’s physical therapy session. I didn’t watch the session, but from what I could hear, it seemed like she was working with him on transfers. I once heard her say that Dad got an A on something that he did, but not an A+. At the end of the session, she said that he got a gold star for the day. I had to laugh to myself as I wondered about the type of psychology that they employed to get him to cooperate. On her way out, Brenda stopped by my office and asked me about the rubber mat for the shower that I had agreed to get during our discussion on 
November 12. Shortly before 3:30 A.M., I heard Dad call for Gale to help him to find the urinal. I got up shortly after that and woke them. I watched as Gale handled all of the meds and routine trach care this morning—her last practice run before I left for Houston. Everything ran smoothly, and we were ready when the wheelchair van arrived at 5:50 A.M., some 20 minutes early.
Gale had her first solo run with the meds and trach care right after I left. Dad took a nap until 3:00 P.M. and was up for the remainder of the day. The three of them played cards, and Mom won again. Gale got Dad in bed by 8:00 P.M. and had no problem administering his night time meds and trach care.
Stephanie, the nurse, came by around noon to take Dad’s vitals and check his bedsore. She said that the bedsore was healing nicely and that it was looking great. Bless her heart; Stephanie also brought us enough trach lubricant to last for a couple of months. These home care nurses were wonderful. In hindsight, I don’t know if I ever told them how much I appreciated them.
We received a steady stream of visitors today, starting with Janet, Dad’s occupational therapist. She and Dad had another good workout today, and I could hear them chatting nonstop during their session. Before she left, Janet said that because Dad was progressing so well toward his goals, she would set new goals for him and extend his treatment for another month.
Since Brenda’s last visit with us, the monstrosity known as the Hoyer lift had been delivered and was in our garage. Brenda showed us how to place the Hoyer lift sling in the wheelchair so that it could be used when Dad arrived at the dialysis clinic. She also had Dad use the walker. He first walked 28 feet and then she had him walk an additional 48 feet. Shortly after she left, Stephanie, the nurse, arrived to check his vitals and his bed sore. Dad was pretty tired after all the exercise and he napped away the afternoon while I worked.
When Stan and I returned home, we found that everyone was napping. Michell had fallen asleep in a chair in Dad’s room and Mom was sleeping in a chair in the living room. At 3:45 P.M., I heard familiar creaking noises from the baby monitor and entered the bedroom as Dad was trying to get out of bed. I didn’t know if he couldn’t remember that he couldn’t walk or if he was taking everyone’s comments to heart about how well he was doing, but he just would not ask for help when he wanted to get out of bed.
After Stan had left, Dad seemed a bit down. He commented that the therapists didn’t seem like they were “interested in moving him along.” We did our best to convince him that they had a plan and he was executing it well. I suspected that he was apprehensive about the appointment with the wound care specialist tomorrow, which didn’t help his mood. I also didn’t think that Dad judged his progress relative to his condition when he was discharged from the hospital, but rather from his condition before the surgery.
The waiting room was packed, and as I looked around the waiting room, Dad seemed to look healthier than the rest of the patients. The exam rooms were pretty small. Between Dad, a wheelchair, Michell, the doctor, a nurse, and me, there wasn’t much room to move. We had to perform some Rubix Cube moves to open the door to let the nurse and aides in and out of the room.
Later in the morning, I received a call from Barbara at the Scott & White gastroenterology center. She said that her office had received a referral from Dr. Issac. She wanted to schedule an appointment for Dad to have his G-tube changed and to discuss 
Shortly before I was ready to log off for the day, Dad wanted to make his way into the office, which was no easy task. Although the door was wide enough for the wheelchair, the placement of a large desk just inside the door made wheelchair access impossible. Gale and I had to carefully transfer him from the stable wheelchair to the less stable 
I had assumed that Michell would replace Gale tomorrow, but I hadn’t heard anything from Becky, the owner of One on One Personal Home Care. I dashed off a quick email to her to confirm, and then returned to my day job.
Dad was still very tired and was ready for bed shortly after Mom was declared the Oh Hell winner of the night. By 7:30 P.M., he was in bed and ready for me to administer his meds and trach care. I sat with him while Gale prepared herself for bed, and then went upstairs to call Stan. To say the least, my updates to him about the daily events were varied from day to day. Because Dad went to bed early, I was also able to retire early and hoped to get an extra 30 minutes of sleep.
Michell arrived at 11:00 A.M. and conferred with Gale for a few minutes. It was nice to have a few weeks in a row with the same two aides. The transitions were easier for them and they were getting to know one another. Shortly after Gale left, Dad wanted to lie down for a short nap.
Dad and Michell were sound asleep when I woke them shortly after 4:00 A.M. We had an uneventful morning and Dad was picked up for dialysis shortly before 6:00 A.M. His dialysis session was finished before 11:00 A.M., and they were home before noon. After administering his midday meds and trach care, he was ready for a nap.
After dinner, Dad felt well enough to play a couple of games of Oh Hell: Dad won the first game and Mom won the second. We had two sets of criteria that determined how long we played cards: how Dad felt and whether he had dialysis the next day and how I felt and whether I had to work the next day. For the most part, I wanted to start Dad’s nighttime routine by 8:30 P.M. so that I could go to sleep by 9:30 P.M. A perfect night was one in which we all got six hours of uninterrupted sleep.
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.
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 
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.
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.
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.
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.
Shortly after lunch, a UPS driver rang our doorbell. He had come to pick up the “box” that contained the infant-sized 
While I was attending an online meeting at work, Michell, the new aide, arrived. Gale spent the next hour orienting her to the routine and her responsibilities. Before Gale left, she confided in me that she thought that she smelled cigarette smoke on Michell’s hands. To address her suspicions, Gale stressed to Michell that we had oxygen in the house and that smoke particles were a hazard for Dad because of his trach.
Dr. Issac started the meeting by asking if we needed anything. Without any hesitation, I told him that I needed him to be Dad’s PCP. Dad was running out of several medications that required the authorization of a physician. I said Dad also needed referrals to see specialists. I told him that although I was an MBRT, I would really like Dad to see a pulmonologist. The room became quiet, people looked at one other for a moment, and the doctor gave me a questioning look. I responded by saying, “make-believe respiratory therapist.” He laughed. In addition to explaining the need for a pulmonologist, I told them about our difficulty in getting a referral to a wound care specialist and how I had had to order the Y extensions from Amazon.com.
I think that our family happy hour was a new experience for Michell. She didn’t drink, but she still joined us and we found that this time was perfect for getting better acquainted with the aides. Although Dad could not drink with us, he still ensured that we kept the bar refrigerator stocked with the beverages that the aides like to drink.
The nurses were ready for Dad when he arrived, so his dialysis session started at 6:30 A.M. Two hours later, his 
When he woke a couple of hours later, he was in a much better mood. Because Dad could not take anything by mouth, all of his meds were crushed, mixed with water, drawn into a large syringe, and inserted into his G-tube, directly into his stomach. When I reached for the Y extension line that connected the G-tube with the tube feed line and provided the input valves to the G-tube, a loose end came up in my hand. I didn’t know how long that it had been disconnected from the G-tube, but Dad and the bed were a sticky mess. It was as if we had thrown a couple of milkshakes in bed with him.
Shortly after Dad’s return home from the CCH a few weeks earlier, Gale and I were careful about the way in which we handled the Y extension because we didn’t know how long the tubing or connectors would last. Just a few days ago, we had asked the nurse if she could acquire more of them for us. Fortunately, she was able to find one and it was still in its packaging. I planned to bring it with me to the hospital later today and was determined that we would not come home until it was securely inserted in Dad’s G-tube.
As I explained the problem, Dr. Klovenski enlisted the assistance of a medical student. This case was a little out of the ordinary and presented them with a problem-solving exercise that they never experienced in medical school. After gathering a variety of 
In addition to the lightheartedness of the visit, this trip to the hospital felt different for me too. From the moment that I arrived, everyone seemed to listen to what I had to say. I felt as if my IQ had suddenly increased. While Dad and I were waiting for the ambulance to take us home, one of the staff members asked me where I worked, and then it dawned on me. I had worn my navy scrubs: the color worn by RNs. Mom always told me to dress for success. I guess first impressions are important.
While I had her on the phone, I told her that I also needed to order some Corpak Y Extensions to connect the tube feed tubing to the G-tube. She told me that she could not provide this item without an order from Dad’s primary care physician. I told her to forget it and that I would just buy them myself. She proceeded to lecture me about how I couldn’t just walk into a Walgreens and buy these supplies. During our call, I had my iPad sitting next to me, which I reached for during my lecture. She required a couple of minutes to complete her paperwork for the exchange order. Before our call had ended, I had placed an order with 
After lunch, Dad had Mom and Gale take him outside to check on the hoses in the backyard. My parents’ acre lot had quite a few young trees. Dad had set up permanent irrigation to some of the trees, but his system required that some hoses be moved among the trees. Diane had been his ready assistant a few days ago, and now it was Gale’s turn. Fortunately, Gale loved being outdoors.
In addition to being concerned about all of the time that Dad was off of the humidified air, I was also concerned about the considerable amount of time he spent disconnected from his tube feed. The tube feed was available to him only in his room because his wheelchair had no IV pole to which to attach the Kangaroo pump that operated the feed. I suspected that he was receiving less than half of the protein and other nutrients that he needed. If I could attach the Kangaroo pump to the wheelchair, then he could receive nutrition all the time as he moved around the house, property, and elsewhere, except during dialysis. When I had called 
During the past few days, I had been discovering some of the flaws in the homecare system and Medicare. When the nurse encouraged us to take Dad to a wound care specialist, I called the nurse practitioner at the CCH for the referral and was told that Dad was no longer their patient and that we would have to get all of our referrals from his primary care physician (PCP). Dad had been hospitalized since May and hadn’t seen his PCP in almost two years. As a matter of fact, we had to cancel an appointment with her during his hospitalization. When I called the office of Dr. Sarla Patil, his PCP, and explained our predicament to her nurse, she said that the doctor could not provide any referrals or refill his prescriptions unless he came to her office. She went on to say that had Dr. Patil been the referring physician for homecare, then they could help, which was a nonhelpful and ridiculous comment. When I explained that he wasn’t ambulatory, she apologized and said that there was nothing that she could do. In desperation, I called the office of the doctor who had saved his life, Dr. Randall Smith. I spoke with his nurse, Christine, and explained Dad’s 
October 15. At 1:30 A.M., I was awakened by the sound of coughing coming through the baby monitor. I kept hoping that Dad would use the 
trach bib moistened with sterile water to provide some moisture to his lungs, he no longer was deprived of tube feed when he left the bedroom. Dad had to be more careful as he navigated the hallways to ensure that the pump didn’t hit the wall or knock photographs off of the wall.
Tale of Two Parents 