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.

hoyerLift
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.

 

Thank heavens for our first ‘plan of care’ meeting!

October 20, 2015. Dad slept well, waking only once during the night. At 4:30 A.M., I took a brief break from work to administer his Midodrine and his morning trach care. Gale and Dad were ready several minutes before the Scott & White ambulance arrived, and Dad was hooked up to the dialysis machine by 7:00 A.M.

Although Tuesday was the scheduled day for the aides to change, Gale had spoken with Becky, the owner of One on One Personal Care, and requested that they switch out on Wednesday to better accommodate Dad’s dialysis schedule, which could not change. Becky agreed and later sent me email, notifying me of Gale’s replacement tomorrow. According to Becky, “Michell is 47 years old and has 26 years of caregiving experience.” She continued by stating that Michell had fantastic references and came highly recommended. What Becky didn’t tell me was that she had just hired Michell yesterday.

When Dad and Gale returned from dialysis, she took him to his room and hooked him up to the humidified air and tube feed, and I administered his midday meds. Dad was tired from dialysis and drifted off to sleep.

poc02Shortly after lunch, a UPS driver rang our doorbell. He had come to pick up the “box” that contained the infant-sized trach care kits. When I pointed to the five-foot stack of six boxes, he said that his pickup request specified only one box. I apologized for the mix-up,  sent him away empty-handed, and called American HomePatient. I had noted the woman’s name who had assisted me yesterday and was able to speak with her again. Evidently, our order had specified one case of FR-14 trach care kits, but the order pickers sent us six cases of FR-8 trach care kits. This discrepancy proved problematic for their inventory system and she said that she’d have to get back to me later.

After dinner this evening, we played cards, and Mom won again. The game ended at 8:30 P.M., at which time we started our nighttime regimen. Dad had slept well last night. I hoped that we could log two good nights in a row.

October 21. Dad, Gale, and I had a great night’s sleep. Although they both slept longer than me, I didn’t begrudge them their longer sleep. It was nice for me to score six hours of sleep. By 7:00 A.M., Dad had received his morning meds and trach care, and he was dressed and in the kitchen talking with Mom. Gale used their time in the kitchen to prepare to return home for the next seven days.

poc03While 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.

Gale filled a room with her presence and when she was gone, the house felt empty. Michell seemed a little slow getting started, but everyone paled in comparison to Gale.

At 12:30 P.M., I took a long lunch break and went to the dialysis center. Today was Dad’s first “plan of care” meeting between Dad’s dialysis team and me, his advocate. Dad would have his next meeting six months from now and then annually thereafter. During the meeting, I met Dad’s nephrology team: Susan (dietitian), Sue (dialysis nurse practitioner), Dad’s social worker, a couple of other providers, and Dr. Tony Issac (nephrologist), whom I knew from Dad’s stay at Scott & White Memorial. Sue and Susan were also members of my parents’ church, so I already knew three of the people on the team.

pocBubbleDr. 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.

Prior to this meeting, I had heard that Dad could not get his dialysis catheter wet. I asked about bathing, and they were practically militant in their response about the importance of keeping the port dry. Basically, this invasive device was like a highway to his heart and brain. Dampness could introduce infection, and we all agreed that we wanted to do everything possible to avoid introducing an infection into his heart. I explained that while Dad was hospitalized, I had become accustomed to seeing the results of his lab work. Even in the last week, his lab results fluctuated wildly. He had been away from the hospital for three weeks and I was nervous about how well he was doing. The only lab results that I had seen were specific to the kidneys. The doctor said that he could order additional lab work and monitor the results.

Finally, I mentioned Dad’s weight, which was now less than 135 pounds. When he was admitted to the hospital five months earlier, Dad weighed 161 pounds. I felt better now that we now had an IV pole on his wheelchair, which enabled him to continuously receive nutrition, but I thought that he needed more calories. Susan told me that I could increase the flow rate from 50 to 55 ml/hour. If he tolerated that, we could increase the flow by an additional 5 ml/hour. She thought that Dad should consult a gastroenterologist to see if the doctor would recommend a bolus feed.

poc02Susan also said that Dad’s calcium levels were high, caused by his extended time in bed. She added that movement would help to decrease the calcium levels. It’s ironic that when you’re sedentary, calcium leaches from your bones and into your blood, which causes the high calcium levels in your blood and decreases your bone density. Although his bones could use extra calcium, I couldn’t give him any because of the calcium in his blood.

We also discussed different ways to weigh him. Unless they can weigh Dad, they cannot calculate a dry weight for him, which means that they’re guessing about how much fluid to remove. The scale at the dialysis center can accommodate a wheelchair, but nothing larger. Because Dad arrived on a gurney, they could not weigh him. They discussed different options, including a Hoyer sling. The dialysis center owns a Hoyer lift, but patients need to provide their own slings. Unfortunately, Medicare could not understand the use case of needing the inexpensive sling without the expensive lift. Someone joked that maybe we could buy a sling on Amazon.com. Dr. Issac pulled out his phone and learned that you could indeed. Nevertheless, we decided to wait until we could transport Dad in a wheelchair and weigh him at that time.

The doctor was very accommodating, and the general feeling in the room was one of awe. They could not believe that we had had so little support, and for all intents and purposes had been on our own. I left the meeting with an overwhelming sense of relief that we now had an additional support system. In addition to being able to call the various dialysis providers, I could also communicate with them via MyChart, the patient portal for Scott & White.

dadOct19
On the patio

When I returned home, Michell watched while I administered Dad’s trach care and midday meds. Shortly after I returned to work, Brenda stopped by for Dad’s physical therapy session. I could not attend the session, but Michell said that she saw Dad stand up on his own by holding on to the bathroom sink. She watched the entire session and thought that he did pretty well. After Brenda left, Dad napped until I logged off from work.

The weather was still nice and the four of us enjoyed happy hour on the patio. After dinner, Michell passed our litmus test and joined us for a game of Oh Hell. Dad had now had two good nights in a row. After running through the nighttime routine with Michell, I hoped that Michell’s first night with Dad would be uneventful.

October 22. Like an answer to a prayer, Dad had another quiet night. Today was Michell’s first day of dialysis with Dad. I don’t know what went wrong, but Dad seemed to jump his groove during his morning routine, although he was still ready when the EMTs arrived at 6:15 A.M.  Although Michell had several years of experience working in nursing facilities, she had never been in a dialysis center, so this was a new experience for her. She managed just fine and was able to administer Dad’s Midodrine two hours into his session. She also had pretty good luck with the ambulance, and she and Dad were home from dialysis by noon.

As usual, Dad was pretty wiped out from dialysis and took a nap shortly after I administered his midday meds and trach care. Dad slept until almost 4:00 P.M. and was ready for happy hour when I logged off from work at 5:00 P.M.

poc01I 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.

At the end of Michell’s second day with us, I wondered if Dad would have another good night, or if he’d initiate her with a night of coughing and attempted bed escapes. For the sake of all of us, I hoped that the quiet nights would continue.

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 Amazon.com 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.

Our homecare dance was three steps forward and two steps backward

October 14, 2015. Dad’s trach was pretty clogged up with thick secretions this morning and I had to break down the secretions with saline to clear his trach. When I was finished suctioning him, Gale and I got him into the wheelchair and he wheeled himself into the bathroom, where he proceeded to cough up quite a bit of mucus into the sink.

At 9:15 A.M., the nurse arrived with a young woman in tow, whom she introduced as a nursing student. Before proceeding with Dad’s exam, she asked if we minded having another person in the room. We had become accustomed to nursing students during Dad’s stay at the CCH, so we told her that we didn’t mind. His vitals were good, including his oxygen saturation, but his poor bedsores hadn’t improved during the past week.

familyTreeAfter 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.

Later, Dad announced that he wanted to go to the garage to see if he could get into the car. I told him that this was a difficult transfer and that he wasn’t ready for it. His problem, or maybe it was my problem, was that everyone kept telling him how good he looked and how well he was doing, and he took their comments just a bit too much to heart. We both stood our ground and argued about it for a few minutes. I finally told him that we would speak with the physical therapist when she arrived later today to see what she said, and he grudgingly relented.

wheelchairIn 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 American HomePatient earlier this morning to see if I could get an IV pole for the wheelchair, the person who took my call said that she would have someone get back to me. Timothy from American HomePatient called this afternoon to see if we would be at home to receive our order of oxygen tanks and the IV pole. When he delivered our order, he also connected the IV pole to the chair.

Brenda, the physical therapist aide, arrived at 11:15 A.M. When we asked her if she thought that Dad could negotiate a wheelchair-to-car transfer, she said that she would have to speak with Kathleen, the physical therapist, to see if we could make that transfer one of his goals. In the meantime, he should not attempt it. She added that until Dad was proficient at this type of transfer, he could have a real problem if he could make the transfer at home when he was rested, but then not be able to handle the transfer when he wanted to come home. He wasn’t thrilled with her response, but he agreed to see what Kathleen had to say. He later claimed that the therapists were trying to hold him back. I explained that they had a plan for his recovery and that he had to be a bit more patient. Dad and I weren’t famous for our patience, so this was a big request.

noPCPDuring 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 relationship to the doctor and that we needed to see a wound care specialist. A couple of hours later, a clerk at the wound care center called to schedule an appointment for Dad at 2:30 P.M. on October 27, almost two weeks from now. Dr. Smith wasn’t Dad’s physician—just a compassionate health provider. Thank goodness for Dr. Smith.

I finished work around 5:00 P.M. and thought that I should suction Dad before our happy hour. Once again, I had to use saline to loosen the thickened secretions at the bottom of his trach. As much as I hated to do this at night when I was tired, I decided that I should change his trach after dinner.

October is a delightful month in central Texas, and we decided to enjoy the wonderful weather by taking happy hour to the patio. We shared some family stories with Gale and she told us stories about her family and grandchildren.

After dinner, Dad was ready to play cards, but I wanted to change his trach before I became too tired. After I set up my two TV trays and trach-changing kit, Gale and Dad returned to the bedroom, and I changed out the trach. Very much like the last time, the interior of this trach tube was lined with hardened secretions and I had to leave it soaking in saline while we played cards. The more time that he was away from the humidified air, the more likely it was that he would narrow his airway with hardened secretions. I showed him the buildup in the trach, but I don’t think that he connected the cause and effect. I don’t know if it was because of the extra air that he received from his new trach, but Dad won at Oh Hell again tonight.

When the game was over, I finished cleaning up the trach while Gale helped Dad get ready for bed. Because I had just changed the trach, I skipped the nightly trach care and just administered his meds while Gale got ready for bed.

I was finally able to call Stan shortly before 9:15 P.M. to give him an update on the day. He then told me that he had decided to stay home this coming weekend and take his on-call rotation for this week, which required that he stay close to home. I was very disappointed, but he assured me that if he took on this responsibility now, he wouldn’t have to miss any more weekends with us for the remainder of the year.

YankerFamilyOctober 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 Yankauer wand, but at 2:00 A.M., I went downstairs to suction him. When I was finished, he was ready to get up and start preparing for dialysis. I told him that I needed to get some more sleep before I started work. Even when he was in his most delirious state, I could reason with him when I played the work card. He didn’t want to do anything that would jeopardize my career or my ability to work. He agreed to stay in bed and I went back upstairs and collapsed on the bed. My iPhone alarm woke me at 3:30 A.M., but I couldn’t get myself out of the bed for another 15 minutes. I donned my scrubs (I now had four sets.) and went back downstairs to work until I had to wake up the residents of the master bedroom. At 4:15 A.M., I woke Dad and Gale and grabbed another cup of coffee for myself.

Dad seemed to lack the energy that he had possessed a couple of hours earlier and was moving a little slow. Even with his lower energy level, he required only a little assistance from Gale to transfer from the bed to the wheelchair, although he still was not strong enough to stand and walk. After Dad was dressed for dialysis, I suctioned him and administered his Midodrine, which was the only drug that he took before dialysis. Midodrine elevated his blood pressure, and the aide always took a diluted dosage that she administered in his G-tube after two hours of dialysis. If his blood pressure dropped too much during dialysis, he might need to go to the emergency room, a trip that we wanted to avoid at all costs.

At 5:45 A.M., Dad and Gale were ready to go, and the ambulance from Scott & White arrived on time 25 minutes later. A couple of hours after Dad’s dialysis session started, I received a call on my mobile phone. My heart stopped when I saw that the caller was Gale. I was relieved when she said that the nurses were administering flu shots today and she wanted to check with me before he received one. I told her that he should get the flu shot, and then I sat for a couple of moments while I waited for my heart rate to return to normal. Although Dad had been doing well while he was at home, he was still very ill and faced numerous challenges. I felt like I was holding my breath whenever he wasn’t within my sight, and these phone calls from the dialysis center were almost as bad as the nighttime calls had been when Dad was in the hospital.

Dad’s dialysis session went well and he and Gale were back home by noon. I stopped work to take the wheelchair outside for Dad’s transfer from the gurney, but after we came indoors, Gale took over and got Dad on the bed and hooked up to his humidified air and tube feed. When Dad drifted off to sleep, Gale, Mom, and I took a short lunch break. When Gale saw that Dad was still sleeping, she seized the opportunity to rest on her bed for what she called a long minute. By 2:00 P.M., Dad was awake and ready to go outside. Gale removed the Kangaroo pump from the IV pole in the bedroom and attached it to the IV pole that was now installed on the wheelchair. Although we still had to rely on the trachBib2trach 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.

Shortly before dinner at 6:30 P.M., I suctioned Dad again and let him get a bit more rest until it was time to play a cutthroat game of Oh Hell. After he won again tonight, the second night in a row, we were suspecting that these naps were giving him an unfair advantage over the weary.

October 16. At 2:00 A.M., I could hear some talking through the baby monitor, but I couldn’t make out what they were saying. When I got out of bed and moved down the stairs, I could hear that Gale was assisting Dad to the bedside commode in the bathroom. They didn’t need me, so I retreated to my bedroom. When I got up at 3:30 A.M. to work, both Gale and Dad were sleeping soundly. At 4:30 A.M., I was walking with a cup of coffee from the kitchen and I heard Dad coughing. I woke the two sleeping beauties and suctioned Dad. They were back to sleep before I sat down in front of my computer with another cup of coffee.

By 7:45 A.M., Dad was in his wheelchair in front of the bathroom sink. All Gale had to do was open the doors under the sink and place the towel so that he didn’t injure his shins. She was now able to straighten up the room and make the bed while he shaved and brushed his teeth. I took a break from work around 9:00 A.M. to administer trach care and morning meds. As usual, he was all dressed and looking spiffy.

When I was finished with him, he rolled himself into the kitchen and said, “Mary, could you fix me a soft-boiled egg?” Mom and I didn’t say anything for a moment, and it was all that I could do to hold myself together. When I explained to him that he couldn’t eat anything, he couldn’t believe that he couldn’t have just an egg. I explained that at some point he would receive swallow therapy, and then hoped to God that he would.

About an hour later, the nurse arrived to check his vitals and see how his bedsore was healing. She thought that it was healing nicely. Doesn’t that just figure? As soon as you get an appointment with a specialist, you start getting better. Shortly after the nurse left, Janet, the occupational therapist, arrived. I had always thought that occupational therapists worked with patients to help them learn how to take care of themselves. Janet spent most of her time working on Dad’s core muscles. Like Kathleen, the physical therapist, Janet was also a New Yorker, and she and Dad could banter like nobody’s business. I don’t know who enjoyed it more, Janet or my father. I could hear them from my parents’ office, and sometimes I had to just shake my head and laugh.

After Janet left, Dad was a little tired and needed a rest. He retired to his room for a nap at 12:30 P.M. and slept for a little over an hour. At 5:00 P.M., our good friends from across the street stopped by for happy hour. Once again, the weather was wonderful, so we all sat out on the patio. This hour with Jim and Sharon was the closest to normal that I had felt in a long time.

When the neighbors left, Dad rested while Mom, Gale, and I ate dinner. After dinner was cleared and the kitchen was cleaned, Dad came back and beat us again at cards. The three losers were seriously considering putting a stop to his evening naps if he kept whupping us at cards. Shortly after 8:30 P.M., Dad, Gale, and I started our nightly ritual and Mom prepared the coffee for the following morning—probably the most important nightly task.

It had been a long day, and by the time that Dad and Gale were in bed and I called Stan, I felt as if I had been awake forever. Although tomorrow was Saturday, it was dialysis day, which meant an early start for our household. I hoped that Dad would sleep until 4:30 A.M.

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 Amazon.com. 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.