The power outage, the EMS, and other things

October 23, 2015. I was able to get in a couple of hours of work before Dad and Michell woke up at 6:00 A.M. I took a short break from work to administer Dad’s morning meds and trach care. Shortly after 8:00 A.M., I was meeting with Manisha, one of my Indian co-workers, when we lost power. It took several seconds for the seriousness of the situation to occur to me. Until a few weeks ago, a power outage was an inconvenience worthy of a fine whine, but now with our dependency on the concentrator and nebulizer for oxygen, electricity was critical for Dad. I called Oncor Energy, and they predicted that power to the area would be restored by 9:30 A.M. I checked our supply of oxygen tanks and called American HomePatient to request an emergency shipment of oxygen tanks. I called Oncor Energy again at 9:00 A.M., and according to the helpful recording, they could not predict when power would be restored; however, crews were assessing the problem. Power to the neighborhood was finally restored around 10:30 A.M. The emergency order of oxygen proved to be unnecessary, but I decided that I would prefer to have an ample supply of tanks on hand rather than risk running out. Dad seemed pretty unaffected by the outage and napped through most of it. During the outage, Michell checked his oxygen saturation level a few times, and it stayed between 97-99%, which was great. The only deficiency caused by the outage was the lack of moisture from the nebulizer to Dad’s lungs.

Tracy, the home care nurse, stopped by around 11:30 A.M. She said that other than his bedsore, he seemed to be doing fine. However, she thought that if anything, Dad’s bedsore was getting worse. I told her that we had an appointment with a wound care specialist in four days. About 90 minutes after Tracy left, Janet arrived for Dad’s occupational therapy session. As usual, Janet and Dad talked nonstop during their session. As she left, she told me that she thought that Dad was making some progress.

Dad complained about all of his tubes and wanted to know when he could get rid of them. I explained to him that it took him five months to get into this condition and it would probably take another five months for him to get better. Evidently, his expectations were significantly different from mine, and he gave me a look that broke my heart. I explained that we were doing everything that we could to ensure success on all fronts, which was why we had the two therapists working with him.

I later texted Adan to see if I had given Dad the correct information. Adan called me, and we had a long talk about Dad’s progress. During our discussion, he said that he thought that my estimate was far too optimistic and that Dad was probably looking at something along the lines of a 10-month recovery. He also said that the trach might be one of the last things to go. Adan also said that we could start the swallow therapy now if he had an order from a pulmonary specialist.

The news that Adan thought that we were ready to start swallow therapy was huge. Less than a month ago, he had told me that because of his chronic aspiration, Dad would not receive swallow therapy. I had implored him to give Dad a chance to fail and not just write him off as a lost cause. After much discussion, Adan had finally agreed to try swallow therapy after Dad regained some of his strength.

We swallow all day long. It seemed like such a simple thing that I had not realized what an intricate process it is. I would later learn that this seemingly simple process is achieved through the careful orchestration of some 80 muscles. According to Adan, simply regaining some of his strength would improve Dad’s chances of success. I felt better after our talk and thanked our lucky stars that Adan had moved from his position as a speech pathologist at the CCH to his current position as the supervisor of rehab services at Scott & White Home Care.

Around 3:00 P.M., I received a call from Brian at Scott &White EMS. He informed me that according to the notes provided to him by his EMTs, Dad could be transported to dialysis on a wheelchair and not a stretcher; therefore, they would start charging us $80 round trip. I explained that it was his EMTs who asked us to wheel Dad outside so that they wouldn’t have to bring the gurney into the house. Furthermore, I told him that although Dad might be able to make the trip there, he was not strong enough for the return trip. Brian said that he would contact the dialysis center to verify my assessment. He called back a little later and said that Scott & White EMS would provide wheelchair transport to dialysis and gurney transport for the return trip, which meant that we would be charged only $40 for each transport. Gurney transport was covered by Medicare, but wheelchair transport was not. Every day it was another nickel, dime, or $40 that we had to shell out to someone.

While Brian and I were discussing the logistics of this arrangement, I texted Sue, the nurse practitioner at the Scott & White dialysis center, and asked if I could call her.

Hoyer lift and sling

When we spoke a few minutes later, she became annoyed and said that this decision was not for EMS to make and that the dialysis center would not accept Dad without a Hoyer sling. As I had learned earlier this week, Medicare won’t pay for the very inexpensive Hoyer sling unless you also get the more expensive Hoyer lift. Dr. Issac wrote an order for the Hoyer lift, but depending on when American HomePatient received the order and their inventory, we wouldn’t receive it until sometime next week.

I logged off from work at 5:30 P.M. and was good and ready for happy hour. Dad joined us until dinner was ready, at which time he returned to his room. The dishes were clear at 7:15 P.M. and we were ready for the nightly game of Oh Hell. I don’t remember who won, but we played a long game that didn’t end until 9:00 P.M.

October 24. It was dialysis day, and Michell, Dad, and I were up at 4:00 A.M. It was raining like a son-of-a-gun this morning. To enable Dad to be picked up by the EMTs, I had to clear a place in the garage where we could transfer Dad from the wheelchair to the gurney. We hadn’t needed this accommodation before because we had had good weather on dialysis days since he had been home. Dad resumed his normal routine for dialysis day and was ready to go at 5:45 A.M.  Because of the inclement weather, the ambulance was about 15 minutes late.

While Michell and Dad were at dialysis, Mom and I did some chores around the house. I also took this time to wade through some of Dad’s medical paperwork. When I sat down in the kitchen with a cup of coffee and Dad’s home care admittance book, I found a document that stated that his Medicare coverage for home health care might end this coming week. I called the on-call nurse to verify this information, and she said that according to her records, Dad was covered through the end of the year, but she advised me to call the office on Monday. I felt mildly relieved but would feel better after I contacted the office on Monday.

Mom and I went to the bank around 10:15 A.M. As we approached the front door of the bank, a HOP Paratransit bus dropped off a passenger. We asked the rider about the HOP service, and she gushed about the paratransit service and the HOP organization. In addition to the convenience and responsiveness of the service, its cost was very reasonable: just $2 per trip. We told her about Dad’s situation, and she encouraged us to apply for the paratransit service.

Mom and I had other errands to run, but the trip to the bank took longer than we had anticipated. We thought that we should go home now to ensure that we were there when Dad arrived home from dialysis. Shortly after we arrived home, Stan arrived from Houston. When we hadn’t heard from Michell and Dad by 12:30 P.M., I texted Michell, and she replied that they were still waiting for the ambulance. Rainy weather often results in car accidents, and accidents take precedence over transport services. There was nothing that I could do for Dad, but I had Stan drive me to the dialysis center so that we could bring Michell home. I planned to stay with Dad until the ambulance arrived, but as Stan and I arrived at the dialysis center, Dad’s ambulance also arrived. Michell said that she would stay with Dad, so Stan and I returned home. Michell and Dad eventually arrived home at 1:30 P.M.

After his seven-hour trip to dialysis, Dad was exhausted, and from the sound of his breathing, it seemed that his trach needed changing. I spent the next few minutes suctioning him and then left him to sleep for a few hours. He started coughing badly later in the afternoon, and I decided that I couldn’t postpone his trach change any longer. Dad seemed to breathe a little better after the trach change, but he still had a lot of secretions, and he didn’t want to suction himself, so I had to suction him again.

We played a game of Oh Hell after dinner, and we started to put Dad to bed around 9:00 P.M. His oxygen saturation was 98%, which relieved me a little, and he fell asleep almost immediately.

Around midnight, Dad’s coughing woke me and I decided to go downstairs to see if I could encourage him to suction himself. He steadfastly refused to hold the Yankauer wand, and his oxygen saturation readings were erratic. I suctioned him for a few minutes and went back to bed when his coughing seemed to subside.

October 25. I woke up at 6:09 A.M. and I didn’t hear any noise from Dad coming through the baby monitor. Convinced that something bad had happened to him, I bolted up out of bed and ran downstairs to his room to see if he was all right. Thankfully, he was just sleeping, albeit quietly. I returned to my room and changed into my scrubs.

I returned to Dad’s room 45 minutes later and found that he was up and washing his face, but he seemed a bit disoriented. I administered his morning meds and trach care and Michell took over for the remainder of his morning ritual.

I left Dad’s room and went to the kitchen. Mom had started the coffee maker a short time earlier, and I was ready for a cup of coffee. Michell wandered into the kitchen and mentioned that Dad had told her that he wanted to stop dialysis. I knew that he understood the implications of stopping dialysis. I hoped that Dad was experiencing a temporary funk, but I needed to watch him and be supportive. While Michell was with Dad in the bedroom, Stan, Mom, and I had breakfast. Dad finally appeared dressed for the day at 9:15 A.M.

While Mom and I attended church, Stan and Dad tried to fix the VCR. When we returned from church, Dad was napping. Michell told us that at 11:30 A.M. he had wanted to lie down for a few minutes, and he fell asleep as soon as his head hit the pillow. Stan told me that he needed to leave early today, but he wasn’t ready to leave until 2:00 P.M. Before he left, I woke Dad so that he could say goodbye to Stan. Dad was constantly surrounded by female caregivers. Stan was the welcome break from all of the female hovering, and Dad enjoyed their time together on weekends. Shortly after Stan left, Michell was able to convince Dad to do some of his physical therapy exercises.

After dinner, Michell and I asked Dad if he wanted to play cards. He said no, that he was just a “hindrance.” I told him that I was really asking if we were going to play cards this evening because we wouldn’t be playing cards without him. We played a long game tonight, and while he was pretty much exhausted by the end of the game, he wasn’t too tired to beat us again.

We started on our bedtime routine at 8:30 P.M., and I was able to call Stan shortly after 9:00 P.M. I was distressed about Dad’s apparent depressed mood, which was uncharacteristic of him. Stan said that he could understand how Dad’s cup could look a bit less than half full from his perspective. Perhaps Stan was correct.

If I thought that I had been unprepared to be a caregiver for Dad’s physical health, I was totally unprepared to handle depression.


How to dress for success for the emergency room

October 17, 2015. I had hoped that we could have slept until 4:00 A.M., but shortly after 1:00 A.M., I was awakened by Dad’s coughing. I listened for a couple of minutes and then decided to check on him. Although we placed the Yankauer wand and suctioning machine near him, he seldom used them during the night. I woke Gale when I turned on the lights with the dimmer switch and opened the trach care kit. His secretions weren’t as thick as I had thought and I was able to return to my room in just a few minutes, and Dad and Gale went back to sleep.

Gale and Dad were awake at 4:15 A.M., but Dad was tired and wasn’t ready to get out of bed until 5:00 A.M. They had their dialysis preparation routine down cold and didn’t need the extra 45 minutes. Dad was ready to leave before the scheduled departure time of 6:10 A.M.

cross3The nurses were ready for Dad when he arrived, so his dialysis session started at 6:30 A.M. Two hours later, his systolic blood pressure dropped below 100, and Gale administered the Midodrine via Dad’s G-tube. Unless the ambulance arrived late, it was great when the dialysis session started and ended early. Fortunately, Dad and Gale didn’t have to wait long, and they were back home by 11:30 A.M. Gale reconnected his humidified air and tube feed and I prepared his midday meds. He was pretty tired and napped for the next three hours.

When Dad woke up, he and Gale sat outside on the patio. He wanted to compose some lists, but his impaired dexterity still prevented him from writing. Gale was always willing to sit outside with Dad and talk, and she happily agreed to act as his stenographer while he dictated. When Mom and I were ready for happy hour, Dad said that he was tired and returned to his room, where he stayed until we played cards at 6:30 P.M. All that sleeping today seemed to pay off for him, and he beat us again at cards.

I was tired and was glad to start preparing Dad for bed at 8:30 P.M. By 9:15 P.M., he was in bed and had received his nighttime meds, and Gale had returned to the bedroom after her own nighttime preparations. Stan was on call and could not come to Temple this weekend. Before crashing for the night, I called him and we talked about our very different days.

Dad slept well for about 90 minutes, and then he began to be restless and have periodic coughing spells. His coughing and restlessness woke Gale but was not loud enough to wake me.

October 18. At 1:00 A.M., Dad’s coughing finally woke me. I listened for a minute or two before Gale paged me through the baby monitor. Gale suspected that he needed suctioning, and she was correct. He required a lot of suctioning, which surprised me because he hadn’t required much suctioning when he went to bed. Shortly before 2:00 A.M., I was finished with him, had cleaned up after myself, and had returned to my bedroom. I dozed on and off for a couple of hours but heard him coughing again at 4:00 A.M. As tired as I was, I knew that sleep was impossible. I got out of bed, dressed in my scrubs, and returned to Dad’s room.

Dad was in a bad mood and his attitude toward me was a little pissy and juvenile, and had the roles been reversed, he would have reprimanded me for my behavior. He straightened up somewhat when Gale, the good cop, returned to the room. She helped Dad out of bed and into the wheelchair, and he wheeled himself into the bathroom and coughed up some more of his secretions. A couple of minutes later, he said that he was tired and he had Gale help him back into bed where she connected his humidified oxygen and tube feed. Gale and I both used the opportunity to get a bit more sleep.

cross4When 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.

I tried to reinsert the Y extension into the G-tube, but it wouldn’t stay. I couldn’t figure out what was wrong. I had Gale give it a try, but she also struck out. We plugged the G-tube, turned off the Kangaroo pump, and proceeded to clean up Dad and the bed. I wasn’t sure what to do about the G-tube, so I called Home Care. It was Sunday, so the after-hours operator had to contact the on-call nurse. The on-call nurse called a few minutes later and said that she would come by so that she could lay eyes on Dad; however, she would not arrive for at least a couple of hours.

Instead of waiting around the house for a couple of hours, Mom and I decided to go to church. As we were leaving the church, Gale called and said that the nurse had just left and that she had noticed something that we had overlooked: the tip of the Y extension had broken off inside of the G-tube. Gale said that the nurse added that she “had never seen anything like this,” one of the worst phrases in the English language. Her advice to us: call 911 and take Dad to the hospital.

cross2Shortly 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.

On the way home from church, Mom and I stopped by the pharmacy to pick up a refill of Midodrine. We had only two pills left and Dad needed four on Tuesday. While at the pharmacy, we learned that we could not get a refill until Tuesday. This was not a 24-hour pharmacy, so there was no way to get the pills before dialysis. Correction: there was no way to get the pills before dialysis and have them covered by Medicare. After a no-win discussion, we paid $30 for two pills.

When Mom and I returned home from the pharmacy, I changed into my favorite navy blue scrubs. The hospital was a dirty and germy place and I didn’t want to wear my street clothes. Although I rode in the ambulance with Dad, passengers are not permitted to enter the emergency department with the patient. I had to stand in line with the walk-in patients and then have someone direct me to him. When I found Dad, he was being triaged and questioned by the nurses, and I heard him say that they would have to talk with his daughter. The resident was Dr. Victoria Klovenski, who had been the resident when Dad visited the ER on October 6.

yExtensionAs 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 EENT implements, they tried a couple of times to pull out the tip, but couldn’t get a grip on it. The student finally tried pushing it into the G-tube with some sharp implement. When it became apparent that this approach wouldn’t work, he pulled for all he was worth to retrieve the implement that was now firmly impaled in the tip, and in so doing, pulled out the broken tip. The puffed up young medical student said, “I just have to say that I feel a little proud.” You would have thought that he had discovered the cure for cancer. It was a lighthearted scene, and I suspected that cases like this one were a nice diversion from tending to accident and gunshot victims. Before we left, Dr. Klovenski asked me why I thought that Dad had a G-tube because he really had a J-tube. I told her that I didn’t know the difference, but that the doctors at the CCH had told me that it was the former. I made a mental note to resolve this conflict.

cross1In 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.

The entire trip to the hospital, beginning with the ambulance ride from home and back took less than two hours, which was like an emergency-room miracle. When we returned home shortly after 3:00 P.M., Dad was in a great mood and he and Gale chatted while I set up my TV trays for the weekly trach change.  Other than the 10 seconds of terror surrounding the actual removal and replacement of the trach, the change was uneventful and didn’t interfere with our 5:00 P.M. happy hour.

Dad returned to the bedroom to nap while we ate dinner. He was still groggy when I went to his room to tell him that we were ready to play cards. While he was resting, I decided to administer his nighttime meds. By the time that I was finished, he was awake and ready to play cards, but tonight his naps failed him and I was the big winner of Oh Hell.

October 19. I woke up at 3:45 A.M. when my iPhone alarm went off. I quickly donned my scrubs and started the coffee maker. As I went to my parents’ office to start my work week, I peeked into the master bedroom and noticed that its residents were sleeping.

Shortly before 8:00 A.M., I was returning to my office with my third cup of coffee and noticed that Gale and Dad were stirring. After finishing my coffee, I returned to the bedroom and administered Dad’s morning meds and trach care, and then returned to work.

I had a busy morning at my virtual place of work and saw Dad during trips to the kitchen for coffee. At 10:00 A.M. I was in the kitchen when I heard the wheelchair moving at a pretty quick clip down the hallway. I had reached the point where I could sense Dad’s mood and the way that he felt by the speed at which he piloted the wheelchair. As he rounded the corner towards the kitchen, he looked great. Gale said what we all thought: he looked like one sharp-dressed man, and Dad said that he felt good.

Shortly after noon, Brenda arrived for Dad’s physical therapy session. I took a short break from work and called American HomePatient. Mom had asked me if we could get rid of the six cases of supplies in our front hallway. I had told her that I would see what we could arrange. All of American HomePatient’s services were tied to Medicare and I had no idea how they handled returns. When I explained to the service representative that the trach care sets that they had sent us were very small, she was surprised because the correct size had been ordered. When I told her that the trach tubes were FR-8, she said that they were for infants and that she would place a pickup order and send us the correct items.

cross5While 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 for two packs of 5 extensions for a grand total of $21.92. I was sleep deprived and cranky and was becoming weary of the steady drumbeat of things that required a PCP. No wonder the providers at the CCH were so skeptical about our ability to take care of Dad. The system seemed to be designed for you to fail. How people who lacked our resources were able to manage everything and navigate the confounding system was a mystery to me.

After Brenda left, Dad napped for a couple of hours, but he was ready to go outdoors to the patio at 2:30 P.M. I hated that he was off of his humidified air for a couple of hours, but the weather was beautiful. Mom and I joined him and Gale on the patio for happy hour.

While Gale, Mom, and I ate dinner, Dad returned to his room for some much-needed humidified air. After dinner, our good day continued with a spirited game of Oh Hell, and Mom was tonight’s winner. We tried to get Dad to bed early on the nights before dialysis, and by 8:30 P.M., we were finished with our nightly rituals and he was sleeping. I hoped that Dad’s very good day would be followed by a very good night.

The battle lines were being drawn between caution and freedom

October 11, 2015. It was close to 12:30 A.M. and we had been asleep for less than an hour when Dad started coughing. After 90 minutes of his intermittent hard coughing, Dianne convinced him to use the Yankauer wand attached to the suction machine to remove some of his own secretions. Within a few minutes after using the wand, Dad was sleeping. Dianne also went back to sleep, but at 4:15 A.M., something woke her. To her horror, Dad was on his knees on the floor. He needed to use the bathroom and for some reason, he thought that he could get there by himself. In a panic, Dianne paged me through the baby monitor.  The anxiousness in her voice propelled me out of bed and down the stairs. The two of us tried for a few minutes, but we could not get him off of the floor and back into the bed. Fortunately, my husband was in town. I called for Stan through the baby monitor, and the three of us were able to get Dad off of the floor. At 4:50 A.M. we finally had him back in the bed. Once again, he was lucky that he hadn’t hurt himself. I could only suppose that when he woke up at night he couldn’t remember that he couldn’t walk or that he was hooked up to two devices. Depending on how he might fall, he could put a strain on his trach and decannulate himself or pull out his G-tube. Just the thought of such things happening gave me the heebie-jeebies.

I woke up again at 6:45 A.M. and woke Dianne and Dad. Dianne and I assisted Dad into his wheelchair and he wheeled himself into the master bathroom to wash his face, brush his teeth, and shave. Dianne gave him a sponge bath and helped him get dressed. He might have needed a few days to reacclimate himself to his house, but after 148 days in a hospital gown, he knew what he wanted to wear and told her where to find it. When he was all shiny and dressed, I stopped by his room and administered his trach care and morning meds. When I was finished, Dianne and I reattached his humidified oxygen and tube feed.

After breakfast, Mom shooed Dad out of the master bath and I went upstairs, and the two of us got ready for church. As we drove to church, I updated Mom on the activities of the previous night. We both enjoyed our respite at church and then returned home to an empty house, although there were two cars in the garage and three cars parked out back.

It was another beautiful day and shortly after Mom and I had left for church, Dad told Dianne that he wanted to go outside. She pushed him outside and she helped him navigate his wheelchair over the entire backyard. My parents’ house sits on an acre lot, so Dad had a lot to show her. After being out in the sun for 40 minutes, they moved to the patio and sat in the shade. Under the best of circumstances, spraying the trach bib provided only a modicum of moisture. Although Diane did her best to keep Dad’s trach bib wet with the spray bottle of sterilized water, the outside air was very dry, so he was breathing in a lot of dry air. After finding them on the patio, I became a little agitated that he had been off of the humidified air for a couple of hours. After a bit of foot-tapping from me, Dad agreed to come back inside.

Just a short time later, Dad said that he needed to go to the workshop in the garage to find a tool for Stan. It was 99 degrees outside and still dry. After he had spent 10 minutes in the workshop with Stan, I insisted that he go to his room for humidified air and nutrition. I kept pestering him to come inside, but he was uncooperative and became angry at my repeated attempts to get him back indoors. I was exasperated. I tried to explain that any time that he spent outdoors was time that he breathed dry air into his lungs and deprived his body of nutrition, yet I was the bad guy.

Finally, at 4:15 P.M. we finally got him back in bed and hooked up to his essential lines, and he quickly drifted off to sleep. Before Dad closed his eyes, Stan came to his room to say goodbye. Stan was returning to Houston but would come back next weekend.

Dad slept until 6:00 P.M., at which time we had happy hour. Sometimes he would sit and talk with us during happy hour, but today he spent most of the time wheeling himself around the house. I can’t begin to imagine how difficult it would be to not be able to sip a drink or eat my favorite foods, and sometimes it seemed that the denial of one of life’s pleasures depressed him. When Mom announced that dinner was ready, Dad wheeled himself back to his room. Dianne trailed after him and helped him back into bed and attached him to the tube feed and humidified air.

By 7:00 P.M., we had the dining room table cleared and the dishes in the dishwasher. We helped Dad back into his wheelchair and we played another cutthroat game of Oh Hell.

Tomorrow would be a work day for me, so I was glad when we started getting Dad ready for bed at 8:45 P.M. Truth be told, it was still past my bedtime. Dianne helped Dad get ready for bed and I administered the nighttime meds and trach care.  After I left the room, Dianne coached Dad through his exercises prescribed by the physical therapist.

He had had a full and busy day, and he fell asleep as soon as he finished his exercises. His coughing briefly woke him up at 11:00 P.M.

October 12. Dad slept pretty well until 1:00 A.M., at which time he started coughing again. Again, Dianne convinced him to use the Yankauer wand and suction machine to clear out some of his secretions. He didn’t sleep much afterward and was very restless. I could hear his coughing and gurgly breathing through the baby monitor, and at 3:00 A.M., I got up, donned my scrubs, and suctioned secretions from his trach. When I was finished, Dad assumed that it was time to get up. I explained to him that it was Monday and that he didn’t need to get up early for dialysis, and he agreed to go back to sleep.

After I cleaned up the trach-cleaning supplies, I went to my parents’ office and logged on to work. For about three hours, I was the only one who was awake. Although I was on Skype almost nonstop, my talking didn’t disturb Dianne or Dad. In addition to Dad being hard of hearing, the oxygen generator was noisy and blocked all sound outside of the master bedroom. My mother was sleeping in a room on the opposite side of the house. I could crash cymbals and not wake up anybody.

At 6:30 A.M., the residents of the master suite started stirring. Dianne unplugged Dad from the oxygen and the Kangaroo pump and helped him into his wheelchair. Once he was situated, he could wheel himself into the master bath and wash up and shave. Before helping him get dressed, Dianne checked his blood pressure and oxygen saturation. His blood pressure was good, but his oxygen saturation was still hovering in the low 90s. I administered his morning meds and trach care and went back to work.

While Dianne got ready for the day and ate breakfast, Dad sat in his room, received humidified air and nutrition, and read the newspaper. At 9:00 A.M., he was ready to go outside and have Dianne help him with some yard work. When he said he wanted her help, he meant that he would tell her what to do. I told him that our aides were not here to do his yard work. Dianne interrupted, insisting that she would love to go outside and do some light yard work. I shook my head and headed back to work while Dianne wheeled Dad outdoors.

Dad and Dianne stayed outside for about an hour, at which time I urged them to come back inside for air and nutrition. I couldn’t decide whether I was starting to feel like a broken record or a nag. Dad grudgingly came back indoors and let Dianne reattach him to his humidified air and tube feed. He fell asleep and slept until 11:30 A.M. We were expecting the nurse this afternoon and I wanted to be sure to administer his trach care and change his dressing before she arrived. When I reached to pull off the speaking valve, it wouldn’t budge. I. Could. Not. Believe. It. It was déjà vu all over again. My only consolation was that the nurse would be here soon. I decided to hold off on changing the trach until she arrived; perhaps she might have better luck removing it.

Like an answer my prayers, the nurse was able to remove the speaking valve, and without any muss or fuss. Before she left, she gave me some tips for handling the speaking valve. As the nurse was walking out to her car, the physical therapist aide entered the driveway. Dianne watched the physical therapy session so that she’d be able to assist Dad with his daily exercises. Shortly after the therapist left, Dianne and Dad went back outside. After about 15 minutes, I was pestering them to come back indoors. Dad agreed and Dianne hooked him back up to his air and tube feed.

At 5:10 P.M., I was finished working for the day and was ready for our happy hour. At that moment, Dad and Dianne went back outside for 10 minutes. I couldn’t believe how much time he was spending outdoors. Mom, Dianne, and I were ready for dinner by 6:30 P.M., which enabled Dad to spend some time on the humidified oxygen and tube feed.

After dinner, we played another rip-roaring game of Oh Hell. Although the game can be challenging, it’s even more challenging when you don’t deal the cards correctly—something that seemed to happen often with Dad’s impaired dexterity. Dianne and I started getting him ready for bed at 8:45 P.M. After Dianne helped him to get ready for bed, I administered his nighttime meds and trach care and sat with him while Dianne prepared herself for bed. At 9:15 P.M., I finally dragged myself upstairs to bed, called Stan, set my alarm for 3:30 A.M., and fell asleep.

October 13. With the exception of a little coughing around 12:30 A.M., Dad slept through the night until I woke him and Dianne at 4:20 A.M. As I returned to work, they resumed their morning routine in preparation for dialysis. When they were finished, Dianne dashed to the kitchen to grab a quick bite of breakfast and I returned to the master bedroom and administered Dad’s Midodrine and trach care. The Scott & White ambulance arrived about 15 minutes early, but Dad was ready. Dianne drove her car and followed the ambulance to the dialysis center. The good thing about being picked up at 6:00 A.M. is that, if you’re lucky, your dialysis session will start earlier, which is what happened today.

The aides at One on One Personal Care switched out on Tuesdays, which was a little difficult logistically with Dad’s dialysis. Gale arrived at the dialysis center at 10:30 A.M. and found Dianne and Dad just as Dad’s session was ending. Dianne drove back to the house, picked up her belongings and paycheck, and drove to her next assignment. The aides worked every other week and rest during the alternate weeks. To accommodate our dire predicament, she sacrificed three days of her week off. Gale stayed with Dad until he was picked up by the ambulance and then drove to our house.

Dianne, Dad, and Gale at the dialysis center

It was good to see Gale again. She looked refreshed but confessed that she had been dog tired when she left us a week earlier. During her first night home, when her husband got out of bed to use the bathroom, she bolted up in bed and said, “Where do you think you’re going?” It took her a couple of days home to wind down.

Gale marveled at the change in Dad and said that he seemed much stronger in just one week. A week earlier, it took considerable effort from the two of us to transfer him from the bed to his wheelchair or to the bedside commode. Now she could transfer him with only a little assistance from me.

Dad spent most of the day resting, which meant that he had a few uninterrupted hours of humidified air and nutrition. At 5:00 P.M., we got him up for happy hour and then he returned to his room while Mom, Gale, and I ate dinner. Although she hadn’t won a game yet, Gale was now a pro at Oh Hell. Dad still had a difficult time dealing cards and our cardinal rule was to always count our cards before starting to play a hand.

We breezed through our nighttime routine. After Gale helped Dad get ready for bed, I administered his meds and trach care while Gale got herself ready for bed. When she returned to the room at 8:45 P.M., I retired to my bedroom, set my alarm, called Stan, and hoped for another few hours of uninterrupted sleep.

We quickly drifted back into our routine. Dad and Gale were both kidders, and they resumed their friendly banter.

I couldn’t believe the difference in this day and Gale’s first day with us. I was still constantly on pins and needles and worried that something could go wrong at any minute, but at least we acted like we knew what we were doing.


Another new experience: premature aide loss

October 8, 2015. At 1:30 A.M., the Kangaroo pump alarm went off, indicating that the tube feed bag was empty. I got up and went downstairs to Dad’s room and woke Amanda so that she could change the bag. Dad was hard of hearing, so I could understand why he hadn’t heard the alarm, but it was about two feet from Amanda’s bed, loud, and annoying, and I didn’t understand how Amanda could sleep through it. The darn thing woke me through the baby monitor.

About 90 minutes later, Dad was awake and tried to get out of bed. It was dialysis day, so Amanda decided to help him get up and get ready for the day. By 4:00 A.M., they were ready for me to administer the trach care. Dad had plenty of time to read the paper, which usually arrived before 5:00 A.M., while Amanda took her morning shower.

dadGurneyHis dialysis session was happily uneventful, with no extra bleeding or trips to the hospital. To top it off, the ambulance was on time for the return trip, and Dad and Amanda arrived back home at 11:35 A.M., which was record time.

The dialysis sessions usually wore out Dad, and it wasn’t unusual for him to take an afternoon nap while we ate lunch. He slept off and on until 3:00 P.M., at which time he wanted to get up because he had company. Our neighbor, Barbara, who was married to Dr. Bob Probe, brought Dad a homemade chocolate cake and some flowers. She seemed surprised when she learned that he wasn’t swallowing yet. We told her that we’d give Dad the flowers and we’d be glad to eat the chocolate cake.

After Barbara left, Amanda convinced Dad to do the exercises that the physical therapist had prescribed.

Dad had been away from the house for 148 days. Fortunately, with the exception of writing an occasional check, Mom and I didn’t have to deal with any financial issues. He had set up their finances so that incoming money automatically went to certain accounts and almost every bill was automatically paid. Now, some of the hospital bills were arriving, and Mom thought that this was a good time to start reorienting Dad to the finances that he had so artfully set up. While they were busy with the finances, I was in the kitchen preparing dinner. While dinner was in the oven, I checked my email and was surprised to see the following message from Becky Crabtree, the owner of One on One Personal Homecare Services:

Good afternoon,

Amanda called me this afternoon asking that she be replaced. She didn’t think she was a good personality match for this position. I have Dianne scheduled to be there in the morning. She is a fill in and will stay until Gale returns on Tuesday. 

I’m sorry things didn’t work out with Amanda. Unfortunately, this happens occasionally. Again I apologize for this change.

princessCushionAlthough Dad seemed to like her, I wasn’t enamored with Amanda, and having a new aide would cause multiple interruptions in my work day to train another person. When the doorbell interrupted my pity party, my first thought was that I wasn’t in the mood for company, but I was relieved to see that we had just received a package from Dad’s padded commode seat cushion had just arrived. The cushion was four inches thick and appeared as if it would have satisfied that princess who had all that trouble with that pea.

When Mom and Dad were finished reviewing their finances, Dad took another short nap while Mom, Amanda, and I ate dinner. Dinner conversation was a bit awkward as we avoided speaking about the elephant in the room.

When I started to administer Dad’s trach care, I encountered a problem with his speaking valve: it wouldn’t come off. When I tried again, Dad exclaimed that I hurt him. I tried one more time before resigning myself to the fact that I would have to change his trach so that I could remove his speaking valve. I couldn’t believe that I had to change out his trach just three days after the last time, but I couldn’t think of any alternative. Besides the fact that I hated changing the trach, I didn’t like changing it when I was so tired. I grabbed the extra TV tray and had Amanda assist me. It was the first time that she had seen a trach tube changed. As much as I hated to perform this little procedure, I felt a tiny bit more confident about doing it now that I had soloed twice.

By 10:15 P.M., Amanda had had her nighttime shower and we had Dad all medded up and in bed. I was exhausted and would need to get up in just a few hours for work. Within minutes of getting myself into bed, Dad was wide awake, telling Amanda that he needed to get up because he had work to do outside. He seemed confused and kept trying to get out of bed. He—and Amanda and I—finally fell asleep around midnight.

October 9. I slept until my iPhone alarm woke me at 3:30 A.M. I listened to the sounds coming through the baby alarm, but all I could hear was the sound of the oxygen concentrator. I dressed in my purple scrubs and headed downstairs to my parents’ office, where I had carved out a place for my computer so that I could work. On my way to the office, I looked into Dad’s room, which was next to the office, and noticed that he and Amanda were both sleeping.

At 5:00 A.M., I heard Dad stirring, so I took a short break from work and administered the trach care and morning meds. Sometimes I liked to go into his room just as he was waking up. He would open his eyes wide and say, “Hi, Mel!” and he always looked like he was glad to see me. When I was finished with Dad, Amanda and I transferred him to the wheelchair, and he wheeled himself into the bathroom to wash his face. Amanda helped him get dressed, and then she assisted him with his daily exercises and hooked him up to the feeding tube and humidified oxygen. About 15 minutes later he asked if he could leave the bedroom. Amanda disconnected his tube feed and oxygen concentrator and hooked him up to the oxygen tank. When he wheeled himself out to the family room, I told him that Amanda had to leave us and that Becky was replacing her with an aide named Dianne. He seemed genuinely sorry to hear that she was leaving. I didn’t tell him that it was Amanda’s idea to leave or that it wasn’t a terrible turn of events for Mom and me.

Shortly before 9:45 A.M., Dianne arrived and she was a bundle of energy. She had several years of experience and was closer in age to Gale than to Amanda. Amanda gave her a quick orientation and then she grabbed her bags and left the house so fast that one might have thought that her suitcase was full of our silver. Within 10 minutes after Amanda’s departure, Dad and Dianne had bonded and he gave her a tour of the house.

Shortly after the home tour, Dad wanted Dianne to take him outside. The weather in central Texas during October is usually very nice, and today we were experiencing Chamber of Commerce weather. Dad had been off of his humidified oxygen and tube feed for a couple of hours. Although I was unsuccessful in getting him to come indoors, he eventually had to come in when the nurse arrived at 11:35 A.M. Then, the nurse probably hadn’t even pulled out of the driveway before Dad was sound asleep. Not only did he sleep through his midday meds, we didn’t seem to disturb him when we changed the sheets on Dianne’s bed. He eventually woke up in time for happy hour. We didn’t play cards tonight, and we started preparing him for bed a little earlier than usual. Dianne was pretty sharp, but because it was her first night, preparing Dad for bed took a little longer than usual. I sat with Dad while Dianne prepared herself for bed.

October 10. I don’t know if he wanted to give the new aide a break or if he had worn himself out the previous day, but Dad did not wake up until 5:30 A.M. In addition, he had slept through the night. Perhaps he was trying to lull Dianne into a false sense of security.

It was Saturday, so I was thrilled to have had the extra sleep. My husband would be arriving soon to visit and to help out with the yard work. When I heard sounds through the baby monitor of Dad and Dianne stirring, I got up, dressed in my scrubs, and went downstairs to his room. I found him in the master bathroom, washing his face and brushing his teeth. When he was finished, I administered his morning meds and trach care. At 6:05 A.M., the phone rang. Back in the day, we might have wondered who in the world be calling us that that hour. Now, we correctly surmised that it was the EMT service from Scott & White, informing us that they would be late.

A few days earlier, the EMTs had asked us if we could wheel Dad outside where they would then transfer him from the wheelchair to the gurney. Our house had some twists and turns that were difficult for the EMTs to traverse with the gurney. Each time that they entered the house with the gurney, they had some close calls with walls and artwork. We weren’t sure if Dad could make the transfers, but we were willing to give their suggestion a try. The EMTs provided him with ample support (some could lift him) and he was able to make the transfers without too much trouble. Most dialysis patients are often weak after dialysis, so the return trip transfers from the gurney to the wheelchair were a bit difficult and required more assistance from the EMTs.

As it turned out, the EMTs were on time, and Dianne wheeled Dad outside and watched as the EMTs transferred him from the wheelchair to the gurney. Dad and Dianne arrived at the dialysis center at 6:45 A.M. and by 7:00 A.M., he was receiving dialysis treatment. Dad slept for the first 15 minutes, but after he woke up, he and Dianne chatted for the remainder of his four-hour session. During Dianne’s orientation, Amanda hadn’t mentioned how to secure an ambulance for the return trip at 11:00 A.M. Truth be told, Gale had never mentioned to me what she did, so I had no clue. About 10 minutes before the end of his session, Dianne asked the nurse who had to call for the ambulance. The nurse placed the call for her. I didn’t know if that was the normal procedure, but it worked for Dianne. The ambulance arrived at 11:15 A.M., and they were home by noon.

Dad was pretty weak, and the transfer from the gurney to the wheelchair was a bit more awkward than usual. He was tired and agreed to go to bed so that we could resume his humidified air and tube feed. Before Mom, Dianne, Stan, and I ate lunch, I administered his midday meds, during which time he fell asleep and didn’t wake until almost 4:30 P.M.

I decided that I liked wearing scrubs, but I didn’t like having only one set. Now that I understood the sizing, I accessed my favorite website and ordered three more sets in navy, black, and fuchsia, three of the colors that I saw nurses and therapists wear at Scott & White.

Before I had had the problem with the speaking valve a couple of days ago, I had changed out Dad’s trach on a Monday, which meant that I would need to change it on the following Monday. With work and my short and interrupted nights’ sleep, I was pretty tired during the work week. Although I now felt a bit more confident with the trach change, I’d prefer to have the change-out day fall on a weekend day. With that goal in mind, I changed Dad’s trach again. Because he had spent so much time away from the humidified air, his secretions built up and hardened in his trach, so changing out his trach more often was probably advisable; however, I didn’t want to stay on a two-day cadence for trach changes.

Similar to the two aides who preceded her, Dianne had never witnessed a trach change and was very interested in the process. She also proved to be a good assistant. Shortly after we finished the trach change, the five of us sat on the back patio for an hour to enjoy the beautiful weather. At 6:00 P.M., Dianne took Dad back to his room and we hooked up the humidified oxygen and tube feed. He took a short nap and woke up as Mom, Dianne, Stan, and I were finishing dinner.

After we cleared the table and finished cleaning up the dishes, Dad announced that it was time to play cards. He explained the rules of Oh Hell to Dianne, and it was game on. He tried to keep score, but the loss of manual dexterity prevented his being able to write to his satisfaction, so I took over the score-keeping. The five of us played a long version of the game and then sat around the table talking. At 10:15 P.M., we finally started to prepare Dad for bed. After Dianne helped him into his night clothes and into bed, I administered the trach care and meds. I sat with him until Dianne returned to the room around 11:30 P.M. and then I headed upstairs to bed.

Now that I had changed Dad’s trach three times, I noticed that he seemed to cough more for about 30 minutes afterward. I didn’t know if that was normal, or if perhaps I applied too much lubricant on the trach tube before inserting it into his trachea. I didn’t want to hurt him during the trach change, so I preferred erring on the side of too much lubricant. What amazed me was that he didn’t know what I was doing when I changed the trach, and he said that he didn’t feel anything. I was thankful that he didn’t approach the procedure with the same sense of dread and apprehension that I felt.







Another trip to the emergency room

October 5, 2015. At 4:00 A.M., Dad was ready to get up. In the past five days, he had progressed to handling most of his personal care. To protect the fragile skin on his shins, Gale would open the cabinet doors under the bathroom sink and place a towel over the sharp edge. Dad would then wheel himself up to the sink to wash his face and brush his teeth. He didn’t like the electric shaver much, but every couple of days he used it to shave. He hadn’t regained all of his manual dexterity, so that discouraged him from using a razor. When he finished cleaning up, he returned to the bedroom, got hooked up to the tube feed and humidified air, and read the newspaper. At the start of Dad’s sixth day home, we felt that we were on the verge of a repeatable routine.

Dad told me that he was having strange dreams. For me, hearing him talk about strange dreams seemed like a major milestone. While he was in the CCH and receiving daily cocktails of antipsychotics, he had had many wild dreams. Unfortunately, he had believed that his dreams were his reality. Now, we were ridding his body of those drugs and he was realizing that his dreams were dreams—it seemed like a turning point.

Two hours later, Dad was ready to lie down and take a nap, which meant that Gale could nap too. I guess being awake all night was starting to take its toll on him. I know that it was taking a toll on me. Shortly before 9:00 A.M., I took a short break from work and administered his morning meds and trach care. In the past few days, my time had improved from 45 minutes to 15 minutes.

For all intents and purposes, Dad’s vital signs were pretty good, but his oxygen saturation had been hovering in the low 90s. I would have preferred something over 95%. In the hospital, the monitors alarmed when his oxygen saturation dropped below 90%. The nurse was due to return today, so I made a note on my iPhone to ask her about it. The nurses weren’t here more than a few minutes during each visit, but they were a lifeline that I had quickly come to rely on.

At 2:00 P.M., Dad had his first physical therapy session. The therapist aide had Dad wheel himself into the bathroom and lock his wheelchair in front of the sink. She then told him to hold onto the sink and stand, which he did, but with assistance. She then had him get back on the bed for some other exercises. To the lay people in the house, it seemed that he had a great session. I hoped that when he harbored thoughts of getting out of bed in the middle of the night, he might remember how difficult it was for him to stand. I could dream.

He was a little tired after his physical therapy session, but he had barely put his head on the pillow for a nap when the doorbell rang. Paula, the home care nurse, stopped by to check his vitals and bed sores and said that he looked great. She didn’t have any concerns about his oxygenation.

trachCareKitAfter Paula left, Dad napped for about 2-1/2 hours. By the time that he woke up, Mom, Gale, and I had eaten dinner. It had now been a week since I had changed Dad’s trach. I wanted to change it again before bedtime and before Gale ended her week with us. During normal trach care, I’d set up a TV tray next to the bed and lay out the contents of the kit. For the trach change, I grabbed another TV tray and set up the changing kit. I mentally ran through the changing routine a couple of times, took a breath, and got started. After donning the gloves, I attached the trach collar to the new trach, applied the lubricant to the trach, loosened the obturator and told Gale to make sure that I pulled it out after I inserted the trach. Trach tubes are very flexible, and the obturator provides the stiffness necessary to insert the trach. If I didn’t remove the obturator, then Dad couldn’t breathe. Now that the new trachTubetrach tube was ready, I removed the ties on his trach collar and then removed the trach from his throat, placed it on one of the TV trays, picked up the sterile trach tube, and inserted it. Because I was holding my breath and counting in my head, I knew that I had made the change in less than 8 seconds. Gale reminded me to remove the obturator, and Dad coughed up a huge wad of secretion, which I had been told was a good thing because it meant that the trach tube was properly placed.

Now that the nail-biting part of the process was over, I attached his trach collar, replaced his stoma dressing, and replaced his beloved speaking valve. I wasn’t finished until I had cleaned and repackaged the trach that I had just removed. The cleaning process took me longer here than it had at the CCH. Because Dad had spent so much time off of the humidified air, some of his secretions had accumulated and hardened in his trach, narrowing its diameter, and therefore the diameter of his airway. Besides that, some dry air was getting into his lungs. I had to soak the trach with the dried secretions in saline for 30 minutes before I could easily clean it. In any case, my first solo trach change was history.

Our family has a favorite card game known as Oh Hell, and now that he had his new trach, Dad was ready to play. He hadn’t regained enough dexterity to shuffle or deal the cards, but that didn’t keep him from winning. Maybe it was a coincidence, but it seemed that winning at cards had a positive effect on him. He woke up only a couple of times during the night and tried to get out of bed only once.

tieredcakeOctober 6. Today was a special day because it was Dad’s 87th birthday. Just two weeks earlier, I had feared that he wouldn’t live to see the day. It was unfortunate that he would have to spend four hours of his birthday in dialysis. I had once envisioned a special cake on his birthday, but we wouldn’t have birthday cake until he could swallow. We had no rigid rules about celebrating birthdays and other events on the day on which they occurred; we could celebrate and have cake anytime.

Dad slept until 5:15 A.M., which seemed like a gift for me. He and Gale ran through their morning routine, and I administered his Midodrine and trach care. The morning seemed to be starting perfectly, and the EMS transport arrived at 6:10 A.M., exactly on time.

The day that Dad was discharged from the CCH, his dialysis catheter was changed out. When he returned to the CCH from the Interventional Radiology (IR) department at Memorial, the nurses and the doctor had had a difficult time stopping the bleeding, and Dr. Anderson eventually cauterized it. For fear of restarting the bleeding, the RNs at the dialysis center had put off changing his dressing. Because it had now been a week since his dressing was last changed, they wanted to change it today.

Dad and Gale returned home from dialysis at noon, which meant that they hadn’t had to wait very long for a ride. Within 15 minutes of their arrival home, I had administered hist trach care and midday meds.

The aides worked seven on and seven off, and we were expecting Gale’s replacement, Amanda. She arrived in the early afternoon, shortly before 2:00 P.M. While Gale oriented her to the house and Dad’s routine and requirements, I noticed that the front of Dad’s shirt was soaked with blood. I called my home care lifeline, and once again, was advised to call 911.

This was the second time in six days that S&W ambulances blared their sirens down our quiet street. The ambulance arrived at the S&W emergency department (ED) with Dad and me at 2:45 P.M. This trip to the ED was not very stressful because we understood the problem and I suspected that he would have his bleeding port repaired by someone in the IR department. I was pleased that during her assessment of Dad, the nurse noted that he was oriented to person, place, and time, an assessment that he had not achieved in more than 10 weeks. The nurse also thought that he appeared to be well nourished. I was so antsy about properly caring for him that I devoured any morsel of positive feedback. The ED doctor stopped by for a moment to introduce herself and quickly introduced us to Dr. Victoria Klovenski, the resident who would oversee Dad’s care.

As I had suspected, Dad had to have his dialysis port fixed in the IR department. This department doesn’t do a big walk-in business and the providers’ time is scheduled in advance, so Dad and I had to cool our jets for about an hour before they could squeeze him into their already-full schedule. Dr. Bradley Dollar, the doctor who changed Dad’s dialysis port just a week earlier, was working in the IR department when Dad arrived. When he had finished with the procedure to repair the port site, he gave me an accusatory look and some attitude when he asked me what had happened to Dad’s port. I assured him that it was Dr. Anderson, at the CCH, not I, who had botched his handiwork. After returning to the ED and Dr. Klovenski, we signed our paperwork, paid our bill, and waited for EMS transport home.

By the time that Dad and I had returned home, it was 7:20 P.M. As Amanda and I were putting Dad to bed, she asked if it was OK for her to take her shower now. I suspect that the look that I gave her perfectly reflected the way that I felt about her request. Hell’s bells, she had been sitting around doing nothing for over five hours. How dirty could a person get? She backed off and told me that just this once she would skip her nighttime shower. She added, “I’m a big girl and I need two showers a day.” Since Dad had returned home, daily showers had become a thing of the past. I looked forward to my Sunday shower and a shower while he was at dialysis. Anything more than that was pure decadence.

Mom, Amanda, and I ate dinner stylishly late and then Amanda watched me administer his nighttime meds and start his tube feed. He had been without any nutrition or liquid since 5:15 A.M. Fortunately, during most of his five hours at the hospital, I was able to get oxygen and an aerosol mist for his trach. I was finished with Dad’s bedtime routine by 8:30 P.M.

Dad didn’t play favorites with the aides and Amada was properly initiated into service. Dad was awake at 9:15 P.M. and 10:15 P.M., and at midnight, he tried to get out of bed. He finally fell asleep at 1:00 A.M., but he woke up at 4:00 A.M., ready to start the day. Amanda wasn’t alone in her fun. Every time he roused her or tried to escape the confines of his bed, he woke me too.

October 7. Amanda had been trying to get Dad cleaned up and ready for the day, but Dad was irritable and kept trying to get out of bed. She eventually prevailed, and I took a short break from work at 8:00 A.M. to administer his morning meds and trach care. Shortly after I was finished, he was resting comfortably in his wheelchair reading the newspaper. Around 10:00 A.M., Dad started getting sleepy, so Amanda helped him back into bed so that he could nap. Amanda took advantage of this respite and snagged herself a 90-minute nap.

I don’t know why, but Mom and I were not bonding with Amanda. We got off on the wrong foot, and couldn’t seem to find the right foot. We didn’t say anything to Amanda because it wasn’t about Mom and me; it was about Dad. Gale called me to see how Dad was doing. She happened to mention that in Amanda’s previous position, she pretty much ruled the house and the schedules. Gale suspected that Amanda might be having a difficult time adjusting to such a demanding position. When it came to aides, I hoped that Amanda was the exception and not Gale.

When Dad woke up at 11:30 A.M., he was ready to wheel himself around the house. He had forgotten many of the details about the house that he had designed and built just 11 years earlier. He was an expert at wheeling himself around corners. The walls of the house were white and there were no signs of wheel marks on the walls or baseboards, except for the places where I tried to help him.

After lunch, our friend, Pastor Don, stopped by to visit with Dad. It was great to see him again. You expect pastors to stop by the hospital, but it is so easy for patients and caregivers to become isolated after the patients return home. Dad was not ambulatory, and although we welcomed these visits, we were hesitant to ask people to come over. Truth be told, we were too busy to think about asking people to stop by.

Shortly before 2:30 P.M., the physical therapist aide arrived to administer Dad’s therapy. She brought with her a 3-inch-high egg-crate cushion sized to fit the seat of his wheelchair, which made sitting in the wheelchair immensely more comfortable. During his session, he spent most of his time doing bed exercises. Dad didn’t think that the exercises provided him with any benefit, and while he followed the therapist’s directions, he made side comments to entertain her.

Although the physical therapy sessions might not have been “doing anything” for him, he was pretty tired when the therapist left. She wasn’t out of the door for more than five minutes and he was sound asleep. I wondered if we could schedule her visits for midnight. Dad woke up from his nap shortly before the nurse arrived at 4:15 P.M. She thought that Dad was progressing pretty well, but that he should see a wound care specialist—something else to add to my to-do list.

After dinner, it was time for Amanda’s most critical test: could she, would she play Oh Hell with the family? At first, she said that she would spend the evening in her room, but Dad persisted, and after a few minutes of orientation, the game was on. I don’t recall who won, but the four of us shared an enjoyable evening.

What was interesting to me was the different relationships that Dad quickly developed with the two aides. Gale, who was in her 40s, was like a pal, and she was a big tease who could dish it out and take it as much as Dad. On the other hand, Dad seemed to take a real interest in Amanda’s future. She was very young, and Dad asked her about her experience and her plans and encouraged her to aim higher. I recall hearing him encourage her to go to nursing school.

In addition to our nighttime routine of trach care and meds, we had another routine of sorts: Dads attempts to get out of bed. On a good night, like tonight, he tried to get out of bed only once. Unlike the nurses at the CCH, we didn’t have the fancy bed alarm but had to rely on squeaky springs to wake us. I had to find a better alarm.


Caring for the man who would not sleep

October 2. It was 2:00 A.M., and Dad was wide awake and wanted to get up. After Gale, our caregiver, called me for assistance, she resituated Dad in bed and helped him roll over on his side, although she noticed he didn’t need her assistance. To keep him on his side and more or less stuck in bed, she wedged a pillow behind him. I don’t know if he slept, but at 4:00 A.M., Gale paged me again when Dad tried to get out of bed, so the pillow didn’t do much to control him.

My parents’ bathroom was large, but the commode was located in a separate room, which was more like a closet. In his current condition, it was physically impossible for him to use the commode. American HomePatient (AHP) provided us with a bedside bedsideCommodecommode that we kept in the common area of the bathroom. Having it in a more open area enabled the aides to transport him to and from the commode, a contraption that he loathed. After helping him into the bathroom to use the dreaded bedside commode, Gale and I were able to convince him to go back to bed. Thankfully, he remained in bed until 8:30 A.M., at which time I administered his trach care and morning meds. I was still a rookie with the trach care and the process took about 45 minutes.

I received a call from Kathleen Devine (I loved her name.), who introduced herself as the home care physical therapist. She wanted to stop by to assess Dad’s strength to determine a plan for his occupational and physical therapies. Our schedule was wide open and she said that she would stop by before noon.

After a couple of trips to dialysis, we had realized that in addition to his extra trach, Dad gymBagalso needed to bring a blanket, a box of tissues, and various other items. Gale told Stan that instead of Mom’s Elizabeth Arden tote bag that we were using to transport his dialysis accessories, Dad needed something larger and more masculine, like a duffle bag. Stan wasn’t sure what she had in mind, but he eventually found a gym bag that she deemed perfect for the task.

Gale checked out Dad’s bureau and closet. She marveled at how well his clothes were folded and organized, although I don’t know if the credit goes to Dad or Mom. With a little guidance from Dad, Gale picked out some clothes for him and dressed him for the day. Gale also made a slight design adjustment to Dad’s undershirt. Because his PEG tube extended out from his midsection, wearing an undershirt over the tube bent the tube, which, in addition to being uncomfortable, was not good for the PEG tube. With Dad’s permission and the precision of Edward Scissorhands, Gale cut a hole in his undershirt and fished the tube through the opening. When Dad wore a button-down shirt, the tube extended through the placket. The PEG tube wardrobe problem was solved.

By 9:30 A.M., Gale and I had transferred Dad to the wheelchair and Gale wheeled him outside on the porch. Dad could navigate the wheelchair pretty well by himself in the house, but he needed some assistance going through the thresholds to the outside. By 10:00 A.M., I insisted that he come back inside so that we could hook him up to the moist air. He wasn’t enamored with the thought of being tethered to the concentrator and nebulizer, but after Mom brought him the paper he seemed pretty satisfied to sit in his room to read it. He hadn’t read a newspaper since July.

At 11:45 A.M., Kathleen arrived. She was a no-nonsense transplant from New York and I liked her immediately. She watched as Gale and I transferred Dad from the wheelchair to the bed and back again. She told us that a physical therapist aide would stop by twice a week to help him stand and walk, and the occupational therapist would visit him once a week and work on his upper body and core strength. We agreed that Dad would have physical therapy on Monday and Wednesday and occupational therapy on Friday. When I asked about speech therapy to address his swallowing problems, she said that I would have to speak with Adan about swallow therapy.

A few minutes after Kathleen left, the doorbell rang again, and this time it was Paula, the home care nurse. According to the plan that we had established during Dad’s admission to home care, the home care nurse would visit us three times a week. Although I was glad to have the nurses stop by, I was also nervous that they would find fault with something that we were or were not doing. Paula told us that Dad’s bed sore, which started when he fell in May, was serious, and she suggested that we get some Mepilex border patches. She had a couple of extras in her bag but told us that they were expensive and that we should ask AHP to supply them for us.

When Paula left, I called AHP but was told that without a doctor’s order, Medicare would not reimburse them. To obtain doctor’s orders would require that I contact Dad’s primary care physician and schedule an appointment, and this activity was not high on my list of priorities, so I decided to buy a package myself. Also, when Gale and I snagged supplies from Dad’s room at the CCH, I grabbed a box of gloves, size small, which were fine for me but were too small for Gale. I logged on to and ordered the Mepilex patches and a case of medium gloves. Was there anything that this company didn’t sell?

After his busy day of visitors, and a tremendous lack of sleep, Dad finally let us put him back in bed and he slept for two glorious hours.

Shortly before 5:00 P.M., Dad wanted to get out of bed and visit with us while we partook of some alcoholic beverages. Happy hour at the Locke house had been a nightly ritual that he could now only watch. Before the surgery last May, my Dad’s Manhattans had been a highlight of the overnight visit to my parents’ house that my girlfriends looked forward to every year.

At 7:30 P.M., we began what was becoming our nightly ritual. I administered the trach care and the meds, and Gale changed out the tube feed bag and filled the new one with Nepro. Gale was quickly becoming a pro at winding the tubing through the Kangaroo pump, and I knew that I needed to start paying more attention to what she was doing. It was unfortunate that the bag did not hold enough Nepro to make it through the night. Fortunately, I guess, Dad didn’t sleep through the night anyway.

October 3. At 2:20 A.M., Gale woke to find that Dad was halfway out of the bed, which prompted her to use the baby monitor to page me. Gale and I maneuvered him back into bed, but he insisted that he was going to get up. I told him that if he didn’t stay in bed, I would get into the bed next to him so that he couldn’t escape. He said, “OK,” and scooted over. Two hours later, we were up and I had a dandy kink in my neck from sleeping halfway off of the pillow. Gale and I transferred Dad to the wheelchair and he wheeled himself to the sink in the bathroom, where he washed his face and brushed his teeth. As he held his hands and washcloth under the faucet, he said that this was the first time in five months that he had felt running water on his hands. Gale and I exchanged glances, too overcome to say anything in response. He neglected to mention that it had also been five months since he had brushed his teeth and washed his face. These milestones helped to put Dad in a great mood.

I administered his morning meds and trach care and Gale dressed him for dialysis. He was ready for the ambulance transport at 6:10 A.M., 10 minutes before his scheduled pickup time. Dad’s great mood diminished somewhat when the transport arrived at 7:20 A.M., 20 minutes after his session was supposed to start.  He was eventually hooked up at 8:00 A.M.

trachBib2During dialysis, Dad used oxygen tanks from the dialysis center, but this service did not include the moisture that he needed to keep his trach moist. In an attempt to compensate for the lack of moisture, Timothy from American HomePatient had provided us with several bibs composed of a porous non-woven material. The bib was placed between the trach and the oxygen source. The bib wouldn’t stay moist for more than 30 minutes, so we kept a small spray bottle in his dialysis bag, and Gale was vigilant about keeping the bib wet.

Dad stayed alert during the entire dialysis session, and he and Gale talked the entire time. I imagine that Gale would have appreciated his taking a little nap so that she could close her eyes. Dad’s blood pressure had dropped somewhat during dialysis, so the dialysis nurse stopped the session before the goal of 1500 ml was reached. Gale called the EMT service for a ride, and once again they waited for more than an hour for a ride home. We were starting to set some pretty low expectations for the EMT transport service.

After they returned home, Dad was tired and wanted to take a nap. During the two hours that he slept, Gale also slept. At 4:00 P.M., Dad was awake and ready to get up. Gale and I transferred him to his wheelchair and we went outside and sat on the patio for 90 minutes. He had been away from the nebulizer for almost six hours today, so I strongly suggested that he go back to his room. My husband, Stan, was still in town, and he visited with Dad until 7:00 P.M., when Mom served dinner. In addition to the baby monitor station in my bedroom, we also kept one of the stations in the dining room. Just a few minutes into dinner, we heard an unusual sound from the monitor. Gale practically leapt from her chair and ran to the bedroom and found my father on the floor on the right side of his bed. In addition to the oxygen, he was also receiving nutrition from the tube feed. All of this equipment was located on the left side of the bed, which meant that he was putting a strain on a couple of vital supplies by being on the floor. It astonished me that he couldn’t figure out that in addition to being too weak to stand, he was also tethered. Fortunately, Stan was there and he, Gale, and I got Dad up off the floor and into the wheelchair. Gale checked his PEG and looked for skin tears and I checked his trach. He hadn’t hurt himself, but he gave the rest of us a scare.

Gale stayed with Dad while Mom, Stan, and I finished dinner. I then sat with him while Gale ate. When she was finished, Gale started getting Dad ready for bed. After he was dressed for bed, Gale and I ran through our nightly routine of meds, trach care, and tube feed.

Starting at 10:00 P.M., he started trying to get out of bed. He might have been too weak to stand, but Gale thought that for a weak guy, he was pretty strong. He could really put up a battle when he wanted to get out of bed.

October 4. The baby monitor alarm woke me at 4:00 A.M. Gale thought that Dad sounded gurgly and thought that he might need to be suctioned. I agreed and after I finished suctioning him, he insisted that he wanted to use the house toilet. Gale and I tried to explain that he couldn’t use it but that we would take him to the bedside commode in the bathroom. To say the least, he became very upset. He complained that the commode seat was very uncomfortable, which was true. He finally relented, but then he didn’t want to go back to bed, so Gale got him up and prepared for the day. I promised Dad that I would order a seat cushion for him, which I did later in the day.

By 6:00 A.M., he was sitting in the wheelchair, attached to the moist oxygen, and reading the paper, and we were all happy.

After breakfast, I returned to Dad’s room and administered his morning meds and trach care and then excused myself to shower and get ready for church. At 10:20 A.M., my mother and I escaped to church. Our friends at church were anxious to hear about Dad. Sue, our friend who was the nurse practitioner at the dialysis center, said that Dad was a real chatterbox. She had been amazed by how much he talked during dialysis. The pastors and everyone else we told about Dad were thrilled that he was at home.

Shortly before we returned home from church around 12:30 P.M., Dad felt a little tired and wanted to go back to bed to rest. Gale mentioned to me that she had heard some noise coming from his stomach and told me that she was going to ask the nurse to listen more closely tomorrow.

My husband had been staying with us for the past week, but after lunch, he went back home to Houston. I don’t know how we would have managed without him and I hoped that we wouldn’t need his brawn while he was gone. For both of us, our vacation had now come to an end. I had set up my work computer in my parents’ office and planned to start back to work tomorrow at 4:30 A.M.

Tonight was another frustrating night of Dad trying to get out of bed. We had him ready for bed at 8:30 P.M., but he slept until 11:00 P.M., after which time he tried repeatedly to get out of bed. At 2:00 A.M., Gale used the baby monitor alarm to call me. Dad had scooted to the end of the bed and she needed help to raise him. He insisted that he wanted to get up. I explained to him that I had to go back to work in a couple of hours and that I wanted him to sleep until 4:00 A.M., which was when I would get up. He agreed to that plan, and the three of us slept for two more hours. I fantasized about six consecutive hours of sleep.

Day 148: Transitioning to Home Care

September 29. Dad was visited by his nurses and respiratory therapists before 8:00 A.M. so that he’d be ready to leave by 8:30 A.M. to have the PICC line removed and the dialysis catheter changed. The ambulance arrived a little early and he was transferred to Interventional Radiology (IR) at S&W Memorial at 8:20 A.M.

Shortly after Dad arrived at the IR department, he tried to scoot himself off the end of the bed. When confronted by the OR nurse, Dad became combative and took a swing at him. In my whole life, I had never seen my father take a swing at anything bigger than a tree roach, yet it seemed to be a common occurrence during his hospitalization. He must have been impossibly frustrated, and I’m sure the cocktails of meds didn’t help his view of the world. As often happened at the CCH, Dad wanted to get up and use the bathroom, which was a physical impossibility. As the OR nurse and an aide helped him with the bedpan, Dad got a skin tear on his calf. During his 147 days of hospitalization, his skin had become very fragile and these skin tears were an all-too-common and disturbing occurrence. Dad finally settled down and his procedure was performed by Dr. Bradley Dollar without further incident. Dad was ready to return to the CCH by 11:00 A.M.

While Dad was having his plumbing changed out, I stayed at home so that I could meet our assistant from One On One and take care of a few things at WalMart with Stan. Among other things, we needed to stock up on washcloths, towels, and sheets. While we were at WalMart, I saw Sheila Rogers from Interim Hospice. After I had called her a couple of days ago about our change of plans from hospice to home care, she resumed her plans to move and was now picking up a few necessities for her new place. She was very gracious and supportive about the turn of events. I really liked Sheila. She was one of those people who seemed to exude compassion and kindness through her pores.

When Gale arrived, I showed her around the house and told her about our plans to have her stay in the back bedroom. Mom would sleep in the twin bed in the master bedroom, and I would stay in the guest room upstairs. Stan had purchased a baby monitor and we had placed the main station in the master bedroom and one monitor station in my bedroom and the other in Gale’s room. Gale immediately disagreed with the plan and said that her room was too far from the master bedroom to be able to attend to Dad at night. Instead, she suggested that she stay in the master bedroom with Dad and that Mom should stay in the back bedroom. It was a good call. We still kept the back bedroom as her home base, where she could keep her personal effects and use the shower. We set up an inflatable bed for Mom in a large room that was adjacent to the guest room. This wasn’t Gale’s first rodeo and she offered many good suggestions.

After getting Gale settled in, she and I headed to the CCH and arrived shortly before Dad returned from his procedure at Memorial. When he returned, I introduced Gale to Dad.


Gale, Dad, and me

Maybe it was the 100+ questions that I asked her, but I think that Angela sensed that I was still a little unsure about changing out the trach. I was less confident than a baby Wallenda who was preparing to move from the safety of a net to a high-wire act across the Grand Canyon. She said that we could change the trach now. Although it could be a problem if you waited too long to change it, changing it more frequently than seven days was not a problem. Angela assured me that it usually took three trach changes to become comfortable with the process. This would be my third time. I had a camera with me and had Gale record the entire process starting with wrestling with the gloves through cleaning and repacking the trach. This time I had sufficient disk space. I was also glad that Gale was here to witness the trach-changing process.

Angela also showed us how to use and maintain the suction machine that we’d have at home. It was a loud contraption—much louder than the system at the hospital, and I hated it. She also gave me a care package of sorts that contained supplies to help us get started, including a couple of trach care kits.

While we were bonding with the suction machine, we noticed that Dad’s new dialysis dressing was seeping a lot of blood. The nurses tried applying pressure dressings to stop the bleeding but to no avail. The nurses eventually called on Dr. Anderson. To stem the bleeding, he had to cauterize the wound.

During the hubbub of activity around Dad, Marty stopped by and I stepped out of Dad’s room to talk with her. When I asked her about Dad’s prescriptions, she said that we were responsible for filling them and asked if I wanted her to fax them to our pharmacy. At the glacial rate at which things were progressing, I didn’t think that I’d have time to get to the pharmacy before they closed. I gladly accepted her offer to transmit the prescriptions.

Whenever the room was empty of CCH providers, Gale gleefully slipped into scavenger mode, gathering anything that wasn’t furniture or nailed down. It made perfect sense because most of the supplies would be tossed after Dad’s discharge. The collection of goodies probably didn’t require covert activities; Angela had provided us with everything we requested, and more. Fortunately, we had come armed with several empty bags.

I called the house and Mom and Stan were still waiting for the morning delivery of the hospital bed, respiratory equipment, and medical supplies. It was now after 3:30 P.M. and I was becoming concerned that Dad would be discharged and arrive home before his bed.

Marty had faxed Dad’s prescriptions to a Scott & White pharmacy near my parent’s house. Unlike CVS and Walgreens pharmacies, the Scott & White pharmacies were not open late, and I had to make sure that I picked up Dad’s prescriptions before they closed. At 4:30 P.M., I left Gale with Dad and went to the pharmacy. Dad’s prescriptions were ready, but I was a little unprepared for the $239.22 sticker shock. The culprit turned out to be Renvela, which retailed for $1250 for 45 packets. Before I could leave, the pharmacist wanted to meet with me to discuss the bag full of prescriptions that included meds to raise blood pressure, an antifungal, a statin, nausea, pain medicine, meds for delirium and sleep, and Renvela, the phosphorous binder. I’d have to make a spreadsheet to keep track of his meds, dosages, and times.

homeHospitalBedI returned home from the pharmacy just after 5:00 P.M. and the guys from American HomePatient had arrived a few minutes earlier and were transforming the master bedroom into our hospital room. Because transportation services are a low priority for ambulances, Dad and Gale had had to wait more than an hour for the ambulance ride home from the CCH. The wait time enabled us to sorta prepare the room. In addition to our special flooring and the shelving, we had also spent a pretty penny on everything that Medicare didn’t cover, like blood pressure equipment and an oximeter, bed pads, and all those linens. Just to set up the room cost us close to $700. We were lucky that we could afford it.

Dad and Gale arrived, via ambulance, at 7:15 P.M. Dad was glad to be home, but he seemed a little anxious. He hadn’t been home for several months, and his memories of home were jumbled.

Timothy and Jared from American HomePatient were still here and they showed Gale and me how to use all of the equipment. Jared demonstrated how to set up the oxygen and the nebulizer that injected moisture into the oxygen tube. Because Dad wasn’t breathing through his nose, he needed the added moisture to keep his air supply moist. Timothy then showed us how to set up the Kangaroo enteral feeding pump and tube feed. My head was spinning and I hoped that between the two of us, we could remember how to use everything.

After Jared and Timothy left, Gale and I studied all of the containers of meds, trying to determine what to give Dad tonight. Right off the bat, I pulled out the Haldol, Hycet, and Risperidone, and put them in another room. It probably wasn’t a good idea, but on my watch, he was going cold turkey and would never receive these drugs again. As it was, I still gave him five different drugs through his PEG tube. Gale unpacked the tube feed bags and set up his tube feed.

Because Dad didn’t get home until after 5:00 P.M., he had to be admitted by the S&W Home Health night nurse. Leo finally arrived at 10:00 P.M., and Mom went to bed after she led him to the bedroom. He was a trip, and Gale and I were pretty sure he had had a couple of cups of coffee. According to him, he was the expert because of the two letters after his name. The admitting process seemed to take forever and included an inspection of the house and a check of Dad’s vitals. Leo finally left shortly after midnight.

Gale and I prayed that Dad would stay in bed. Unlike the hospital beds, this one did not have rails at the foot of the bed. Fortunately, he slept all night—that is, if you call sleeping until 4:00 AM. all night.