The diagnosis

November 21, 2015. Despite the howling winds that blew through town overnight, I slept well, waking up only a couple of times when I heard Dad coughing. I got up early and woke Dad and Michell shortly after 4:00 A.M. Dad woke up slowly and had another difficult morning. I administered another dose of Imodium in his G-tube, along with his morning dose of Midodrine, which would help raise his blood pressure during dialysis. Michell and I also had the fun task of collecting a stool specimen that we had to drop off at the dialysis center.

diagnsisLetter-dWhen Michell and Dad were picked up by the EMS wheelchair van service, Stan and I drove to the dialysis center. I had been very upset that they had removed 2,500 ml from Dad on Thursday, and I intended to express my concern to the charge nurse. For each 1,000 ml removed, a dialysis patient loses 1 kg. After I had explained Dad’s situation, she said that they would just clean his blood today and not remove any fluid from him.

I remained at the dialysis center with Dad until he was weighed, which would determine his wet weight. Instead of gaining weight since his last session, which is what typically happens with dialysis patients, he had lost weight. He now weighed 128 pounds, five pounds less than his dry weight on Friday. Although two dietitians were now monitoring his nutrition, I was very concerned about his weight. I know that Michell was concerned when she learned how much the nurse planned to remove, she didn’t feel that she was qualified or entitled to question their judgment.

diagnsisLetter-iAfter I saw Dad weighed, Stan and I left Dad and Michell at the dialysis center so that we could run several errands before Dad returned home. Everything worked in our favor, and we were home by 10:30 A.M. As it turned out, Stan and I didn’t have to rush. Dad and Michell had to wait for the van and didn’t return home until after noon.

As soon as he got home, I administered Dad’s trach care and meds. Following dialysis, Dad usually was ready for a nap, but not today. During the storm last night, we had wind gusts up to 40 MPH that ushered in a cold front, and we lost a roof shingle. As soon as I was finished with Dad, he was ready to discuss with Stan how to replace the shingle.

diagnsisLetter-aShortly before 2:00 P.M., Dad took a long nap on the couch while we were in the living room because he didn’t want to be away from us. I think that he thought that sleeping on the couch would ensure that he didn’t miss happy hour, but he slept through it. Dozing on the couch might not seem like a big deal, but it was another first for him in his post-hospital life. We had to rely on the oxygen tank and trach bib because we couldn’t bring the oxygen concentrator and nebulizer to the living room, but he was able to receive Nepro during his nap. He slept for about four hours, and we woke him when we finished dinner.

We played cards again, and Stan was tonight’s winner. Shortly after 8:30 P.M., we started our bedtime routine, and by 9:10 P.M., I was heading upstairs. I had been concerned that, after sleeping for so many hours today, Dad wouldn’t be able to sleep, but he was snoozing before I left the room. Since lunchtime, I had been feeling like I was coming down with a cold, so I took some Nyquil before bed. Even if it didn’t help fend off a cold, it would help me sleep.

diagnsisLetter-gAt 10:30 P.M., the baby monitor station in our room started alarming. After quickly putting on my glasses, I could read the message on the display that indicated that our station was unlinked from the base station. As I tried to turn on the light, I discovered that the power was out again, which was why the monitor was unlinked. I called the power company, whose phone number was now stored on my iPhone, and listened to the recorded message stating that the power would be restored by12:30 A.M. I went downstairs and checked on Dad and Michell. Although the baby monitor alarm was also sounding in their room, it was the silence of the oxygen concentrator that first woke Michell. When I entered the room, she was setting up an oxygen tank next to Dad’s bed. I called the power company again, and the recording had been changed and now stated that they didn’t know when the power would be restored. The power came back on at 3:30 A.M. as Michell was replacing Dad’s empty oxygen tank.

November 22. After the interrupted night’s sleep, I finally woke up when I heard Michell telling Dad that it was 6:00 A.M. When I entered the master bedroom, my first thought was that Dad seemed as sleepy as I felt. However, his movement seemed unnaturally slow. Right after he finished washing his face and brushing his teeth, Michell checked his oxygen saturation level, and it was 74%, a severely low level. I then noticed that I didn’t hear the soft hissing sound from the oxygen tank that I heard when the oxygen was flowing. When I checked the tank, the valve was in was in the off position, which surprised Michell. She was sure that it had been on and thought that Dad must have leaned against the key and turned it off. We quickly put him back on the bed, removed his speaking valve and gave him unobstructed oxygen from the concentrator and nebulizer. After 30 minutes, I still wasn’t happy with his oxygen levels, so to rule out any chance of an obstructed airway, I changed out his trach. For the past couple of weeks, we had been slowly reducing the amount of oxygen that we administered from the oxygen tanks and his oxygen saturation levels had remained high. I now decided to increase his oxygen level back to two liters, which is where it was when he was discharged from the CCH almost two months ago.

diagnsisLetter-nBy 8:00 A.M., Dad was back in the wheelchair and was reading the Sunday newspaper. When Mom and I left for church, he and Stan were playing cribbage. After a couple of games of cribbage, Dad wanted to lie down and rest. According to Michell, he fell asleep as soon as his head hit the pillow. Usually, he liked for us to wake him before Stan left for Houston, but today he asked that we let him sleep.

We finally woke Dad and helped him out of bed shortly after 3:00 P.M. He was up for the rest of the evening, and Michell was able to get him to run through some of his swallow-therapy exercises. Dad rested in his room again while we ate dinner, and he was ready to play cards when we were finished eating. By 8:20 P.M., we were finished with cards and starting our nighttime routine. Less than 25 minutes later, we had finished administering the meds and trach care, and Dad was sound asleep.

diagnsisLetter-oNovember 23. Dad was very slow in waking up this morning. When I heard him and Michell talking, I took a break from work to administer his morning meds and trach care. Tracy, one of our RNs, called around 9:00 A.M.to see if we could be her first stop this morning. I was very low on the Mepilex dressings that American HomePatient didn’t provide and asked Tracy if she could bring me a few to tide me over until I could order more from Amazon. She said that she would stop by the office and pick up a couple for me. I was very fond of Tracy. She was a wonderful nurse and the mother of a special needs child. She was one of my favorite nurses and a very caring person. She arrived at my parents’ home at 10:00 A.M. with my requested dressing in hand. After her brief examination of Dad, she said that his bed sore was practically healed. With the way that Dad had been feeling, I didn’t want to take him back to the wound care doctor, which would most likely take the entire afternoon. She said that I could safely cancel his appointment with wound care today. Also, she didn’t think that I would need any more of the expensive Mepilex dressings. I happily accepted the good news and canceled the appointment with the doctor and the EMS wheelchair van service.

diagnsisLetter-sWhile Tracy was visiting, Dad spent the entire time either sitting or lying on the bed, so she didn’t see how weak he had become. Shortly before Tracy arrived, Michell had had to hold up Dad to keep him from falling when he was trying to get dressed. I hoped that we would hear something soon from Dr. Pfanner’s office.

I contacted Kathleen, the physical therapist, to see if she could come over today to take care of Dad’s 60-day assessment for Medicare. As part of the assessment, the Scott & White Home Care providers would recommend an additional 60 days of home care. Unfortunately, because the health care providers can’t perform their assessments more than five days before the assessment due date, which was this coming Saturday, the earliest that she could stop by would be Tuesday, which was a dialysis day. According to Kathleen, the therapists and the nurse would arrive on Wednesday to perform their assessments. After a couple of phone calls, she and I decided that to avoid a massive traffic jam of providers, she would conduct her assessment on Thanksgiving Day. I was impressed how everyone was willing to work on and around one of the biggest US holidays of the year. For us, every day had become basically the same, but these people all had families and lives outside of work. My only concern had to do with Dad’s diminishing strength and that he might not be able to exhibit progress during his assessments.

diagnsisLetter-iShortly before noon, Michell helped Dad with some of the exercises prescribed by the occupational therapist and then she, Mom, and I helped him walk from the kitchen to the bedroom.

Kristen arrived at 2:15 P.M. for Dad’s speech therapy session, but he was sleeping. I had thought that we would not see any of the therapists until next week, but Kristen said that she was not part of Kathleen’s team, plus, she had just started treating Dad. To enable Dad time to wake up, she said that she would visit with her next patient and return in about 90 minutes. She returned shortly before 4:00 P.M., and she and Dad had a good session.

I worked only a half day today and ended the day around the time that Dad woke up. I retired to the kitchen and baked a couple of batches of biscotti. I needed to get my annual baking underway, but I felt guilty for baking something that Dad liked but could not eat. It didn’t help that the aroma of the biscotti wafted throughout the house.

Late in the day, Dr. Pfanner’s nurse called and said that Dad tested positive for CDiff. She and I discussed some antibiotics that he could take for it, but she would need to consult with the doctor and get back to me. Evidently, Dad’s G-tube was causing them to rethink which medication to prescribe. It was ironic that this infection was probably caused by Dad’s long-time usage of antibiotics, yet it would take another antibiotic to get rid of it. It was terrible that he had contracted this infection, but at least we knew why he had had this terrible diarrhea and that he would soon have medication to treat it.

diagnsisLetter-sI would need to leave town again for a day or two in early December. I had asked Michell if she would consider administering trach care and the meds while I was gone. I told her that Gale had performed these same tasks while I was gone a couple of weeks earlier. Michell had worked in nursing homes before she took a position with One On One Personal Homecare Services. In nursing homes, she would not have been permitted to perform either of these tasks. The rules of home care were at the discretion of the home care providers, namely me. I encouraged her to speak with Gale to see how she had managed. Truth be told, Michell had already performed tasks here that would have been off limits for her in a nursing home. Fortunately, Michell said that she would agree to be trained by me and give me her final decision after she had a chance to speak with Gale. During our nighttime routine, I showed her how to administer the trach care. She was nervous, and it would take a bit more practice with her, but I had to give her credit; I don’t know if I would have been willing to assume responsibility for the trach care had I been in her shoes.

 

Derailed on the road to recovery

November 18, 2015. Dad had a good night. I slept well and woke up a bit earlier than usual, getting an early start at work. I didn’t know when Gale and Dad woke up, but I started hearing Gale’s voice coming from the bedroom a few minutes before 7:00 A.M. The Imodium that I administered in Dad’s tube feed last night seemed to be working, and he looked very perky when I administered his meds.

trachTubeBecause he was feeling better, it seemed like a good time for me to take a break and change his trach. I set up my TV trays to do that. I still hated this weekly task, and I had a knot in my stomach throughout the procedure, but I was accomplishing it in less time.

Michell arrived for her week with us shortly before 11:00 A.M. Gale updated her on Dad’s recent health challenges and progress and showed her the handout of Dad’s new swallowing exercises. Shortly after Michell arrived, I administered another dose of Imodium into Dad’s feeding tube, along with his midday meds.

Brenda was scheduled to arrive for Dad’s physical therapy session at noon. When she hadn’t arrived by 12:30 P.M., Dad decided to lie down and rest. Brenda finally arrived at 1:00 P.M. for Dad’s session. Considering that he had not felt well enough to exercise the past few days, he did pretty well during his session and had a very good workout.

Kristen arrived promptly at 2:00 P.M. for Dad’s second swallow therapy session. Mom’s book club met on Monday, so Mom hadn’t been at home for Kristen’s first session with Dad, but Mom met Kristen today, and she really liked her. Kristen put Dad through his paces, exercising his neck muscles. Like Gale, Michell sat in on these sessions so that she could coach Dad with his exercises on days when he did not have therapy. Earlier in the day, Adan, the manager of the therapists with Scott & White Home Care, had called me to ask about our Monday session with Kristen. I told him that I had been very pleased and was very optimistic about Dad’s chances. He told me that to ensure that Dad would be successful, he, Kristen, and I would work together to determine the perfect time for Dad to have the modified barium swallow study (MBSS).

elephantAbout 30 minutes after Kristen left, Sally and Ray, dear friends of my parents (and me) stopped by for a visit. In about a month from now, they would move from Temple to New Braunfels. I saw Sally only a few times a year, but she is a delightful person and fabulous quilter and crafter of cards. Her husband, Ray, is also an interesting person who had been involved in the space program, another one of my interests. I could practically recite the dialog from the Apollo 13 movie, and Ray had been involved with this launch at NASA. I would miss them both after they moved from Temple. Dad came out for a few minutes to visit with them. The visit lacked our usual spontaneous conversation. They hadn’t seen Dad in almost a year, and I suspect that his appearance was a little shocking and was the proverbial elephant in the room. It didn’t help that Dad wasn’t feeling well.

blogNov10Shortly after Sally and Ray left, I administered another Imodium pill into Dad’s feeding tube. Although he was feeling a bit better, he still was not better.

After dinner, we played cards, and I won, which indicated that I was improving as a scorekeeper.

After Michell helped Dad get ready for bed, she went to her room to change her clothes for bed. While she was out of the room, I administered Dad’s nighttime meds and trach care. During the trach care, I noticed that his trach was moving around—a lot. I quickly saw that there wasn’t anything holding it in place. Seconds later he said that he felt sick. I grabbed a small red plastic basin from the bathroom, applied some pressure to his trach, and turned on the suction. Eventually, he felt well enough to hold the front of his trach while I tightened the collar which had somehow become loose. It took about 30 minutes to get him to the point where he felt well enough to lie down and try to sleep. From what I could surmise, one of two things had loosened his trach collar since this morning. Either the swallowing exercises had loosened the trach collar, or his shirt collar had been caught under his trach collar when I changed out his trach. Regardless of the reason, Dad and I were both a little rattled by the experience. Michell returned to the bedroom shortly after I had adjusted the ties on the trach collar. This incident was another example of how quickly his situation could change and why we couldn’t let down our guard for a minute.

November 19. I woke Michell and Dad at 4:00 A.M. Michell got up, but Dad continued to doze. Michell had a difficult time getting him out of bed, and when she did, he kept falling asleep on the commode. When Dad moved home after being discharged from the CCH, we had purchased a box of Depends. Dad had flatly refused to consider them, but today he didn’t want to go to dialysis without them, which was an indication of just how bad he felt. It seemed as if his condition was becoming serious. I was thankful that we had an appointment with a gastroenterologist tomorrow.

For the first time since he had come home, some 52 days ago, he was not ready when his transit service arrived.

dohDuring his dialysis session, Dad had the nurse call the EMS dispatch office 15 minutes before his session was scheduled to end so that he wouldn’t have to wait any longer than necessary for his ride home. When Michell told me that they had removed 2500 ml from him, I was flabbergasted. When he left there, his dry weight was 138.28 lbs. He was probably dehydrated when he got there, and then they removed over two liters of fluid from him. I couldn’t help but question the judgment of the nurse who made the decision to remove almost twice the usual amount of fluid.

blogaug1-leftWhen Dad and Michell arrived home at 11:15 A.M., Dad was wiped out and was not feeling well. Within a few minutes after getting back on the bed, he was nauseous, and his trach collar was loose again. I tightened the collar, but he still didn’t feel well. I was becoming very concerned about him and called the Home Care nurse. Stephanie was working today and arrived shortly before 1:00 P.M. in response to our call. After checking Dad, she said that heard congestion in his lungs that she had not heard before. Also, his oxygen saturation never exceeded 93% while she was there. My concern for Dad escalated when Stephanie advised me to call 911.

Stephanie stayed with us until the ambulance arrived and then provided the EMTs with his current status. When she left, the EMTs listened to his chest and ran a bedside EKG. They said that they didn’t notice the congestion that Stephanie had mentioned and that his EKG appeared to be normal. Dad was still complaining about his stomach and nausea. They said that they didn’t see any urgency in taking him to the emergency room, but they would take him if we wanted them to. Dad was already taking a cocktail of drugs that included antibiotics, so I decided to get him something for nausea and let the EMTs leave.

blogaug1-rightAlthough Dad’s condition wasn’t any better, I was somewhat relieved by the EMTs’ assessment, and that we were able to avoid the emergency room. Dad was scheduled to see the gastroenterologist tomorrow, so I just needed to get him through the night. I called Sue, and she refilled Dad’s prescription of ondansetron (Zofran). Mom drove to the pharmacy as soon as I got off the phone with Sue. By the time that she returned home with the prescription, Dad was in a deep sleep. I eventually administered the Zofran in his feeding tube shortly before 5:00 P.M.

We finally woke Dad around 7:00 P.M. He said that he felt better, and his sense of humor was on display. I gave him his evening meds and then encouraged him to get up, which was a mistake, because he thought that it was morning. He was very confused and disoriented and wanted to go into the bathroom so that he could wash his face and brush his teeth. Michell and I finally convinced him that it was nighttime, and got him into his night clothes and back in bed by 8:30 P.M.

November 20. After working for a couple of hours, I went to Dad’s room to wake him and Michell. Usually, they don’t have to get up early on Fridays, but today Dad had an appointment with the gastroenterologist, and the wheelchair transit van was scheduled to arrive at 8:30 A.M. Dad slept through the night, but he wasn’t feeling very well when I woke him. The diarrhea continued to plague him. Between his dehydration from the diarrhea and the dialysis session yesterday, he was shaky and unsteady.

blogaug1-leftWe were ready when the van arrived five minutes early. The van transported Dad and Michell to the clinic, and Mom and I followed in the car. The clinic was located less than five miles from my parents’ home and after locating the doctor’s office and paying the co-pay, we were seated in the waiting room a good 20 minutes earlier than the 9:20 A.M. appointment. When they weighed my 6’1” father, his weight was 134.3 lb, which was less than it had been when he left dialysis yesterday. We waited almost an hour in the waiting room before we were escorted to an examination room. Exam rooms aren’t very large, and they can seem downright tiny the patient is in a wheelchair and is accompanied by a three-person entourage.

After waiting for a few minutes, Julianne and Talitha, the dietitian and nurse, arrived. I really liked them. They were very attentive, and among other things, they confirmed that Dad had a G-tube (and not a J-tube, as Dr. Klovenski had insisted on October 18). While we were there, they changed out Dad’s G-tube, which should be done every month. Julianne considered changing his formula from Nepro to something else but decided that they should test Dad first to ensure that his diarrhea wasn’t caused by his 5-1/2 month liquid diet of Nepro. When Dr. Timothy Pfanner arrived and reviewed Dad’s chart, he said that Dad could have bolus feeds, but not until he was over whatever was causing the diarrhea. To rule out CDiff, the doctor wrote an order for some lab work. I know Dad hadn’t been feeling well, but it was a nice coincidence that we happened to have an appointment with the gastroenterologist at this time. As we left, I scheduled a follow-up appointment for Dad and called the transit service to pick up Dad and Michell.

Mom and I arrived home shortly after 11:15 A.M. Dad and Michelle were not picked up by the van until 11:30 A.M., and it was almost noon before they arrived. Dad was pretty tired by the time he got home. He was scheduled for a physical therapy session in a couple of hours, so I administered some meds and Michell helped him back to bed for a nap.

Brenda arrived shortly after 1:00 P.M. for the physical therapy session, but Dad was wobbly and was unable to execute transfers between the bed and wheelchair with the walker.

Friday wasn’t his usual day for physical therapy, but next week was Thanksgiving, and the therapists were adjusting their schedules for the holiday. Dad was scheduled to have his 60-day evaluation with Kathleen next Wednesday, so he wouldn’t be able to have therapy again until after her evaluation. I told Brenda that we would work with Dad and have him walk between now and then. Brenda said that he should not be walking. I was a little surprised because the other therapist, Lara, had had him walking. I was tempted to tell her that we had already been walking with him, but thought better of it.

After Brenda had left, Dad napped for a short time before Janet arrived for his occupational therapy session. Occupational therapy treatment wouldn’t be reviewed by Kathleen for Dad’s 60-day evaluation, so Janet would return for another session next Wednesday, the day before Thanksgiving. After Janet left, Michell coached Dad through some of his speech exercises.

blogaug1-upStan left work early and drove from Houston to my parents’ home. He arrived shortly after 5:00 P.M. and just in time for happy hour. Shortly after 6:00 P.M., Dad went to his room and read the paper while we had dinner. After dinner, we played Oh Hell and hit the hay pretty early.

It had been a long week, and I was glad to have Stan with us for the weekend. Dad had seemed to have been progressing, with only little blips along the way. This week it felt like our progress had been derailed, and I hoped that after our visit with the doctor today Dad would get back on track.

After the fall

November 15, 2015. Dad had a restless night, waking up a few times during the night. At 8:45 A.M., he was ready to get up. Before Gale helped him transfer from the bed to the wheelchair, I administered his morning meds and trach care. Gale had done a great job of taking care of Dad while I was in Houston, but she was glad to have me back in Temple to resume the trach care. After I left the room, Dad wheeled himself into the bathroom and proceeded to shave and wash up. He seemed to have an upset stomach and didn’t get out of his room and into the kitchen to visit with us until 10:00 A.M.

blogaug1-1As Mom and I were driving to church, I told her that I had read the log book that the aides kept about Dad, so I knew about Dad’s fall yesterday. I was pretty irritated that she had decided to withhold this information from me. I was very invested in his care and recovery, and it disturbed me that my parents would choose to keep this information from me. She agreed that they would not withhold this type of information from me again and said that she would talk with Dad after lunch. However, we both hoped that there would be no next time.

bellsWhile we were at church, Dad told Gale that he was tired and that he wanted to lie down. He also complained about some tightness and soreness in his back. Gale thought that he also seemed a little depressed about yesterday’s fall in the bedroom. The home-patient hospital beds had only two side rails, which did nothing to keep Dad in bed. At one point, I had used pipe cleaners to attach a couple dozen little bells to four chairs that we pushed up against the sides of Dad’s bed. He still might have been able to escape from the bed, but we hoped that the bells would wake at least one of us during an attempted escape. The chairs and bells had worked for about a week but were less effective as Dad got stronger. One side of the bed was partially obstructed because of the oxygen concentrator and nebulizer. While Dad napped, Gale moved the wheelchair to the other side of the bed and locked it in place, which made that bad boy practically impossible to move.

After Mom and I returned home from church, Gale told us that Dad had diarrhea. According to her, it had started last night and had become progressively worse during the day. I decided to call the Home Care office and request a visit from the on-call nurse.

blogaug1-leftAfter lunch, Dad read the newspaper in his room and rested until the nurse arrived at 4:20 P.M. She said that Dad’s vitals were great and said that he didn’t have a fever. When she learned about the fall (During every visit, providers ask if you’ve had any falls.) and the difficulty that Gale and Mom had had getting him up off of the floor, she said that we could always call for a nurse for assistance. Regarding the reasons why we had called for a nurse, she could only speculate about the cause of his diarrhea and back pain.

Now that the fall was common knowledge, Mom and I spoke with Dad for a few minutes, and I implored him to ask for help when he needed to get up. He restated that he didn’t want to be a bother, and I told him that we had hired someone whose sole purpose was to be bothered by him. He agreed to ask for help going forward.

He seemed to feel a bit better and joined us for happy hour.

Mom was the big winner at cards this evening. It had been a long day, and we were all tired. We started our nighttime routine at 7:45 P.M. and by 8:30 P.M. we were all in bed.

November 16. Dad had a tough night, starting at 1:00 A.M. This bout of diarrhea had a firm grip on him that was becoming progressively worse. He eventually got out of bed and ready for the day around 8:00 A.M. Gale was able to convince him to exercise with the core weight, but by 10:00 A.M., he wanted to return to his room to lie down.

blogaug1-upShortly after noon, Tracy, the nurse, stopped by for Dad’s routine Monday checkup. Similar to yesterday, Dad’s vitals were good. I asked her if we could give Dad some Imodium, but she said that she could not give advice about medications. I finally asked her what she would do if she was in my position, and she said that she’d give her father half of a pill.

I went to Walgreens and purchased a box of Imodium. A standard dosage was two pills, so I wasn’t concerned about crushing a half of a pill and administering it into his G-tube. I wouldn’t have thought that such a small dosage would have helped much, but he seemed a little better for the next five hours.

At 2:00 P.M., the doorbell rang, and we opened the door and met Kristen, the speech pathologist. When Dad wheeled out to meet her, she introduced herself to Dad as the speech therapist. He said that that was a shame because he hadn’t prepared one. To her credit, she laughed. The session might have been for Dad, but I learned a lot about our complex system of muscles that enables us to swallow. She had Dad work through a couple of throat exercises and left a sheet of exercises for him to practice between sessions. She also said that he could eat crushed ice anytime that he wanted.

After Kristen left, Gale helped Dad use the walker to walk from the kitchen to the laundry room, a distance of about 12 feet. He walked slowly, but his steps were steady and controlled. He stayed up for the remainder of the day, resting only while Mom, Gale, and I ate dinner.

blogaug1-rightAfter dinner, Dad felt like playing cards, which was our litmus test for how well he was feeling. By 7:30 P.M., I had won, and we were moving Dad toward his bedroom to start the nighttime routine.

My room was the only room on the second floor, with windows on three sides. On most nights, I could see the moon from my bed. We were expecting some storms through the area in about six hours, and the wind was already howling around my room when I turned out my light.

November 17. The storms that were predicted to start at 2:00 A.M. started two hours late, just around the time that I woke Gale and Dad. Dad had had a great night’s sleep, but he still had not recovered from the diarrhea. I hated to send him away for 4-5 for dialysis hours with these symptoms and hoped that another 1/2 Imodium would help him. Fortunately, the torrential rain that started at 4:00 A.M. had let up some when the wheelchair transit van arrived. The rain ushered in a cold front, and the temperature had dropped almost 20 degrees between the time that I woke up and when Dad and Gale were picked up.

blogaug1-2Fortunately, they didn’t have to wait too long after dialysis for a ride, and Dad and Gale were home by 12:15 P.M. He was pretty wiped out and wanted to take a nap. By 12:40 P.M., he was back on the bed, hooked up to the tube feed and moist air. I administered his trach care and a portion of his midday meds. I became distracted by some shiny object and forgot to administer his antibiotic. Less than five minutes after I left his room, he was sleeping. While he slept, I called Sue, our friend and nurse practitioner at the dialysis center, to see what else I could do for Dad. She said that I could safely give him two pills, the recommended dosage of Imodium.

By 4:00 P.M., Dad was awake but was still very sleepy. Before he joined us for happy hour, I crushed two Imodium tablets, mixed them with water, and inserted them into his G-tube.

While Mom, Gale, and I enjoyed assorted beverages, Dad ate some crushed ice. A little bit of crushed ice went a long way, but at least he was getting a chance to practice swallowing.

Dad took a short rest in his room while Gale, Mom, and I ate dinner. Although he wasn’t feeling his chipper self of a few days ago, he felt well enough to beat us at cards.

scorpion1While Gale and I were in Dad’s room running through his nighttime routine, Gale found a little scorpion on the floor near her bed. Gale was one of the most fearless women I knew, but she screamed like a little girl when she saw the critter. We had barely disposed of it when she encountered another one crawling on the bathroom floor toward the bedroom carpet. My parents had found scorpions in the house in the past, but I don’t recall ever seeing one, and tonight we saw two.

Although many things in our lives were uncertain, one thing was very certain: Gale would never walk barefoot in the bedroom again.

 

 

Just when I thought we were making some progress

hoyerLift
Hoyer lift and sling

November 10, 2015. Dad had another good night’s sleep. At 4:00 A.M., I took a short break from work and woke Dad and Michell. They progressed through their morning routine without any hitches, but Dad was a bit apprehensive about today’s trip to dialysis. Although today’s transit service to dialysis would be with the wheelchair transit and not the gurney service, he was probably nervous about being moved from the wheelchair with the Hoyer lift. It was supposed to be a safe way to move less ambulatory patients, but it was an unknown entity for us. Before the transit van arrived, we positioned the Hoyer sling under Dad so that the nurse could attach it to the lift when he reached the dialysis center.

When Michell and Dad arrived at the dialysis center, instead of using the Hoyer lift, the EMTs picked up Dad and placed him in the dialysis chair. We had hoped that the nurse at the dialysis center would weigh Dad in the wheelchair so that we could establish a dry weight for him, but the EMTs were too fast. When Dad’s session was finished, Michell encountered a couple of EMTs who had just dropped off a patient. She was able to convince them to transport them home, which enabled Michell and Dad to arrive home at  11:15 A.M., which tied our record time.

Between my working and Dad’s three hours’ worth of naps, I didn’t see him except for trach care until happy hour. He seemed well rested, and by 7:45 P.M., he had beat us at Oh Hell. He headed for bed, and we were finished with our nighttime routine by 8:15 P.M. Our mornings and nights were starting to run like well-oiled machines.

laZbonesNovember 11. Dad had another good night. I might have heard him cough twice. At 7:45 A.M., I was between meetings and wanted to administer trach care and meds, but Dad was still in bed and didn’t want to get up. I told him that he was a lazy bones and that we’d have to make “Lazy Bones” his theme song. He smiled, didn’t open his eyes, but started singing the song.

With the assistance of Michell, he finally got out of bed and got himself shaved and washed up by 8:30 A.M. It was Wednesday—change out day for the aides. Michell was packed up and ready to leave, but she couldn’t go until Gale arrived. Gale was running about an hour late, and she eventually arrived around 11:00 A.M. The ladies exchanged information about Dad, and Michell was on her way.

Mom and Dad met about finances for a while this morning, and then Dad took a short nap before Stephanie, the nurse, arrived. She was also running late, but she finally arrived at 1:00 P.M. Stephanie said that Dad’s vitals were all good and that his lungs sounded clear. She also said that she saw some signs of his bedsore starting to heal. I asked her about the odds of Dad being released from Home Health Care on the 24th. She didn’t think that that would happen, and said that Dad’s home care would most likely be extended an additional 60 days. I wasn’t sure how the process worked, and I had been asking every caregiver for her opinion. The thought that we’d be discharged after our initial 60 day period unnerved me. I was almost out of the lubricant that I used for Dad’s trach. Before Stephanie left, I showed her the package and asked if she could find us some extra packets.

cross9Before Stephanie’s car left the driveway, Brenda pulled up behind her for Dad’s physical therapy session. I didn’t watch the session, but from what I could hear, it seemed like she was working with him on transfers. I once heard her say that Dad got an A on something that he did, but not an A+. At the end of the session, she said that he got a gold star for the day. I had to laugh to myself as I wondered about the type of psychology that they employed to get him to cooperate. On her way out, Brenda stopped by my office and asked me about the rubber mat for the shower that I had agreed to get during our discussion on November 6. I had forgotten to order one, but I promised that I would find one. I also asked her about the chances of us being discharged on the 24th, and she also didn’t think that it was likely. Gale asked her about the exercises that they should concentrate on until she returned on Friday. Whenever the providers left the house, they sat in their cars and updated their notes about their visits with Dad. Before Brenda had pulled out of the driveway, I had ordered Dad’s bath mat from Amazon.

Shortly after Brenda left, Mom and Gale helped Dad use the walker and he walked 48 feet. I logged off from work shortly after 4:30 P.M. and told Dad that I needed to change his trach, and that we’d all be happier if I took care of that chore before happy hour. I grabbed my two TV trays and my assistant, Gale, and we ushered Dad into the bedroom. I probably didn’t need an aide to help me, but I felt better having one of them there with me. Sometimes I forgot to bring something, or I needed an extra hand. For the first time in about six weeks, Dad’s trach was not crusty. The weather had been bad and he’d been forced to stay indoors and away from the dry air.

Dad won at cards again. Before he went to bed, I had Gale administer the meds and the trach care. Gale had said that she would handle Dad’s trach care while I was out of town for a couple of days this week. I was hoping that I could also convince Michell to do the same when I left for a couple of days in December. Gale did a great job, but to ease her mind some, I typed up some notes that detailed every step of the basic routine trach care and the med prep processes. I would be gone for about 48 hours, so she would not need to know how to change his trach.

blogNov10-02November 12. Shortly before 3:30 A.M., I heard Dad call for Gale to help him to find the urinal. I got up shortly after that and woke them. I watched as Gale handled all of the meds and routine trach care this morning—her last practice run before I left for Houston. Everything ran smoothly, and we were ready when the wheelchair van arrived at 5:50 A.M., some 20 minutes early.

While I was working, I heard the audio caller ID on my parents’ landline announce in a distorted voice that we were receiving a call from Watts Prison. For a moment I considered letting the call go to voicemail, but my curiosity got the better of me. I laughed out loud when the caller identified herself as Kristen Watts. So that she didn’t think that I was a nutcase, I quickly explained why I was laughing. After exchanging schedule information, we agreed on Monday and Wednesday sessions at 2:00 P.M. for Dad’s swallow therapy. Her first visit with us would be on Monday, four days from now. I practically ran out of the office to find Mom and share the good news!

I received a call from Gale at 12:20 P.M., stating that she and Dad were on their way home from dialysis. I waited until they got home, and then I left for Houston. The last time that I had been home was on September 22. During that three-day visit, I had come home to pack a few items that I would need during Dad’s final days in hospice.

blogNov10-01Gale had her first solo run with the meds and trach care right after I left. Dad took a nap until 3:00 P.M. and was up for the remainder of the day. The three of them played cards, and Mom won again.  Gale got Dad in bed by 8:00 P.M. and had no problem administering his night time meds and trach care.

That evening, I attended my photography class. The last time that I had seen my classmates, I told them that I had just finished making hospice arrangements for my father. We had had quite a change in fortune since late September. I had been attending class with some of these people for more than five years, and I had known the instructor since 2008. It felt good to be with them again, and they were very excited about Dad’s progress.

November 13. Dad had had another great night, and he slept until Gale woke him at 8:00 A.M. Shortly after Dad was out of bed and dressed, Gale noticed that the line from the nebulizer was dry, which meant that Dad wasn’t receiving any moisture with his oxygen. She called Jared from American HomePatient, and he came over immediately. It seemed that we were supposed to change the water bottle every two weeks. Gale added this missing tidbit of information to our list of chores, but it would have been nice to know this about six weeks earlier. Jared and the other representatives who set up Dad’s home care room probably did tell us everything that we needed to do, but this orientation occurred amid a whirlwind of activity with no written instructions left behind.

blogNov10Stephanie, the nurse, came by around noon to take Dad’s vitals and check his bedsore. She said that the bedsore was healing nicely and that it was looking great. Bless her heart; Stephanie also brought us enough trach lubricant to last for a couple of months. These home care nurses were wonderful. In hindsight, I don’t know if I ever told them how much I appreciated them.

When Brenda stopped by later for Dad’s physical therapy session, she had Dad practice a dry run (literally) getting in and out of the shower with the new mat. She didn’t have him walk today, but she had him run through a series of bed exercises.

My Mom’s dear friend, Marilyn, stopped by around 3:30 P.M. with a nice arrangement of mums and visited with my parents for about an hour. Mom hadn’t resumed her social life, and she benefited by having her friend visit.

Meanwhile, I was in Houston. While I had been in Temple with my parents, my employer had arranged for new office space on our campus. I would be moving from a cubicle to an open-space environment with less room for books and personal belongings. I spent most of the day in my cube, throwing out paper. I filled up three trash cans and three recycle bins, and was still not finished. Stan was thrilled when I brought home three boxes of personal items.

blogNov10-02November 14. Dad seemed to be on a roll. He had another great night’s sleep. He and Gale ran through their morning routine and arrived at the dialysis center shortly before 7:00 A.M. It was a slow day for the EMS transport service, so the wheelchair transport arrived shortly after Gale called them, and then she and Dad arrived home shortly before noon.

Dad was tired and was ready for a nap after Gale administered the midday meds and trach care. After Dad had drifted off to sleep, Gale left the room.

While I was in Houston, I ran several errands, stopped by the office to throw out more paper and prepare my belongings for the move, and got a haircut. I encountered several friends and happily told them about how well Dad was progressing. When I started my return trip to Temple at 2:00 P.M., I was feeling positive about how we were getting along.

blogNov10-01Shortly after I left Houston, Dad woke up from his nap and needed to use the bedside commode. Instead of calling for assistance, he decided that he could get out of bed and into the bathroom without assistance.  Not surprisingly, he fell as soon as he took one step from the bed. Gale heard the commotion through the baby monitor and ran to Dad’s room. She was unable to lift him off of the floor to get him back into the bed. She called for my mother for assistance. It took the two of them almost an hour to get him back into bed so that she could assess any damage caused by the fall. Not only had he been attached to the tube feed, but the oxygen was also attached to his trach collar, which was cupped over the trach tube. While on the floor, he had put a tremendous strain on his G-tube and he was lucky that he didn’t decannulate himself during the fall. After Gale had straightened out the mess caused by the mishap, she helped Dad transfer into the wheelchair.

An hour or so later, Dad wheeled himself into the kitchen and asked Mom not to tell me about his fall. She said that she wouldn’t tell me about the incident, as long as he promised not to try to get out of bed again without assistance.

When I arrived at my parents’ home shortly before 5:00 P.M., I was greeted by what seemed like a happy household. We had a nice happy hour, and after dinner, we played two games of Oh Hell. Gale was excited to win the first game, and Mom won the second game.

blogNov10-02When we finished playing cards, Gale told me that she wanted to take a shower. She said that I might want to read her log book to catch up on the activities that occurred while I was gone. I read her notes about today’s fiasco and was horrified, appalled, and furious. Such a stunt could have seriously hurt him. I spoke with Gale before I went to bed, and she was very upset. She said that she had never experienced such an incident before and was not sure that she wanted to return, which would be a tremendous loss for all of us. Not only would we lose a wonderful caregiver, but we also were very fond of her.

Fuming, I went upstairs and called Stan. The poor guy got an earful as I unloaded my frustrations of Dad’s day. He talked me down and told me to approach Dad and his resistance to following instructions in terms of my fears. He wasn’t kidding. Dad was his own worst enemy, and like Gale, I was afraid to let him out of my sight.

 

Finally: some progress and encouraging news

November 2, 2015. I had been working for over an hour when Dad woke up at 5:00 A.M. after a restless night. He was ready to get out of bed, so Gale got up, disconnected his oxygen and tube feed, and helped him transfer from the bed to the wheelchair. Just four weeks earlier, this transfer required the brawn of both Gale and me. Now, Dad needed just a minor assist from one of us. Because he was now able to reposition himself in the bed, we no longer had to use the draw sheet to move him in the bed.

By 6:00 A.M. he was dressed and ready for his morning meds and trach care. His burst of energy was short-lived, however. By 7:30 A.M. he was ready for a nap, but 90 minutes later he was awake and ready to face the day again.

blogNov01-6Later in the morning, I received a call from Barbara at the Scott & White gastroenterology center. She said that her office had received a referral from Dr. Issac. She wanted to schedule an appointment for Dad to have his G-tube changed and to discuss bulous feeds, which would enable us to administer larger quantities of Nepro three to four times each day and discontinue the continuous feed. Because of Dad’s dialysis schedule, I couldn’t schedule an appointment any earlier than November 30.

A short time later, I received a text message from Sue, our friend and the nurse practitioner at the dialysis center. After conferring with Dr. Issac about the missing Fluconazole (antifungal), she said that the doctor wanted Dad to take the pills for another two weeks. She wrote a new prescription for two weeks’ worth of pills, which still cost the better part of $200, but about half the cost of the prescription that we had declined on Saturday at the pharmacy.

The nurse arrived shortly before 1:00 P.M. to take Dad’s vitals and check his progress. She thought that he was progressing well, and was gone within 10 minutes.

While I was working, Mom took a phone call from Scott & White EMS. They asked if we still needed the EMS transport service to dialysis. Evidently, we’re supposed to call them at the start of each month to schedule pickups for the upcoming month. I hoped that the next call that we made to the dispatch office was to cancel the service. At $120 per week, this service was starting to get a bit pricey.

blogNov01-5Shortly before I was ready to log off for the day, Dad wanted to make his way into the office, which was no easy task. Although the door was wide enough for the wheelchair, the placement of a large desk just inside the door made wheelchair access impossible. Gale and I had to carefully transfer him from the stable wheelchair to the less stable 1980s era four-star desk chair. I was glad that the physical therapist wasn’t here to watch.

A couple of days earlier, Dad had lifted his legs off of the bed during a wheelchair transfer and Laura had been having him exercise in front of the bathroom vanity. Dad said that he wanted to try walking with the walker. After happy hour, Mom followed Dad with the wheelchair and Gale retrieved Dad’s walker and helped him walk 14 steps down the hallway, which was a huge accomplishment. I’m not sure that we should have been having Dad walk without the supervision of his physical therapist, but we were very excited. Only two weeks earlier, standing and moving with the walker would have been impossible.

After dinner, we were ready for a cutthroat game of Oh Hell! By 8:15 P.M., Mom was the big winner, and it was time for us to begin our nighttime routine.

My nighttime calls to Stan were much more enjoyable after a day like today. We were starting to get more support from healthcare providers and Dad’s strength was starting to return. Our baby steps seemed to be moving in the right direction.

November 3. Yesterday’s good day continued on into the night. Dad slept well and didn’t wake up until I woke him at 4:00 A.M. He and Gale marched through their morning routine and were picked up by the EMS at 6:00 A.M. Dad’s scheduled pickup time was 6:20 A.M., but you never knew when they would arrive. Dad didn’t like to be late for anything, so he was usually ready by 5:45 A.M.

blogNov01-3I had assumed that Michell would replace Gale tomorrow, but I hadn’t heard anything from Becky, the owner of One on One Personal Home Care. I dashed off a quick email to her to confirm, and then returned to my day job.

Because Dad had been picked up a bit early this morning, he had gotten started early on his dialysis session, and he was able to leave dialysis early. He and Gale didn’t need to wait very long for the EMS ride for the return trip, and they were home by noon. After I administered his meds and trach care, Dad was ready for a little nap.

About a week earlier, on October 26, Barbara, a neighbor and doctor with Scott & White, told us that she would try to help get Dad an earlier appointment with a pulmonologist so that he could get started on his swallow therapy. Today, I asked Mom if she had heard from Barbara. She said that she had, and Barbara had said that after the pulmonologist had checked Dad’s medical records, he declined to see Dad, saying that Dad was a chronic aspirator and that treating him would be pointless. This discouraging news was practically impossible to process. I couldn’t bear the prospect of Dad never being able to eat again. Mom and I tacitly agreed to not share this depressing news with Dad.

When he woke up about three hours later, Gale interrupted me at work to tell me that Dad seemed very disoriented. He was in the bathroom washing his hands, but he didn’t seem to know where he was. We assumed that he was exhausted from dialysis and that he would snap out of it. He didn’t come out of his room to visit with us during happy hour, but he seemed to perk up when asked if he wanted to play cards after dinner.

blogNov01-2Dad was still very tired and was ready for bed shortly after Mom was declared the Oh Hell winner of the night. By 7:30 P.M., he was in bed and ready for me to administer his meds and trach care. I sat with him while Gale prepared herself for bed, and then went upstairs to call Stan. To say the least, my updates to him about the daily events were varied from day to day. Because Dad went to bed early, I was also able to retire early and hoped to get an extra 30 minutes of sleep.

November 4. I had been working for about 30 minutes when Dad woke up shortly after 4:15 A.M. He wanted to get out of bed, and he had Gale disconnect him and help him transfer to his wheelchair. He wheeled himself into the bathroom and proceeded to fall asleep. Gale helped him back into the bed and I suctioned him. He had been coughing a lot and had a super wet cough, so I thought that he’d have a lot of secretions to suction, but the trach tube was dry. I surmised that the cough had more to do with his lungs than his trach. After sleeping for about three more hours, he was awake and raring to get out of bed at 7:00 A.M. I took a break from work about an hour later and administered his morning meds. By 8:30 A.M., he was dressed and alert and leaving the bedroom at full speed in his wheelchair.

Around 9:45 A.M., the three of us got with him to walk again: one of us on each side and one behind him with the wheelchair. His gait was a bit unsteady, but he took about 17 steps, which was equivalent to almost 19 feet, a distance that we based on the size of our floor tiles.

blogNov01-7Michell arrived at 11:00 A.M. and conferred with Gale for a few minutes. It was nice to have a few weeks in a row with the same two aides. The transitions were easier for them and they were getting to know one another. Shortly after Gale left, Dad wanted to lie down for a short nap.

When Dad woke up, he wanted to work on his computer. I had commandeered his computer desk and had disconnected his computer so that I could use the keyboard and mouse, so he had to use Mom’s computer. With him and Mom in the office, it seemed like the perfect time for me to get out of the room and take a lunch break.

Shortly after 1:00 P.M., Laura arrived for Dad’s physical therapy session. She had Dad walk the same path that we had had him walk earlier, but he walked it at least twice during their session. She then moved him into the bathroom and had him do some exercises while holding onto the vanity. Dad was pretty exhausted when Laura left and was ready for another nap.

Just as I was logging off for the day, I received a text message from Adan, the manager of rehab services at S&W Homecare. I had texted him earlier in the day and asked if we could talk sometime today after 3:00 P.M. When I called him, he said that he would contact our PCP (probably Tony Issac or Sue, Dr. Issac’s nurse practitioner) to have a swallow study ordered for Dad. He also said that he’d have Kristin, a speech pathologist, contact me sometime tomorrow to schedule an appointment with Dad. Adan and I agreed that we wanted her to have some swallow therapy sessions with Dad before the modified barium swallow study (MBSS) to ensure that he would be able to handle the barium. He also said that he would contact the Pulmonary desk at S&W to see if he could find out which doctor would be assigned to Dad.

I was stoked. Adan was one of a handful of people who was in our corner. Without him and the nephrology team at the dialysis center, I don’t know what we would have done. I was thankful that Mom had met and had come to know Adan while Dad was at the CCH. I couldn’t wait to share this good news with Mom and Dad.

We played Oh Hell again, and Dad won (beating Mom by just a few points). We were in bed early and I called Stan at 8:30 P.M. to share the news of the day. It was a nice quiet night until about 12:30 A.M. After hearing Dad cough for about 15 minutes, I got out of bed and went downstairs to suction his trach.

November 5. Sometimes I found it difficult to sleep with all of the noise that emanated from the baby monitor. This was one of those nights—or mornings. I finally got back to sleep about an hour before my iPhone played its annoying wake-up ring tone. I made my way back downstairs, started the coffee maker, and logged on to work.

blogNov01-4Dad and Michell were sound asleep when I woke them shortly after 4:00 A.M. We had an uneventful morning and Dad was picked up for dialysis shortly before 6:00 A.M. His dialysis session was finished before 11:00 A.M., and they were home before noon. After administering his midday meds and trach care, he was ready for a nap.

He woke up from his nap a bit disoriented again, but he became more alert as the day progressed. I knew that he was completely alert when he complained after learning how much we were spending on his in-home care. It wasn’t a topic that I wanted to have discussed too much within earshot of Michell. A cost of $1,000 per week might have seemed high, but it was a bargain for 24/7 care.

Other than the discussion about medical bills, Dad was in fairly good spirits for the remainder of the day. We were experiencing another beautiful autumn day today, and Dad wanted us all to sit on the patio during happy hour. Michell was starting her second week with us and was beginning to feel more comfortable with us, and she started talking about her personal life. I have friends who spell their names as Michelle and Michele. I asked her about the spelling of her name and whether hers was a family name. She laughed and said that her mother didn’t know how to Michelle and consequently, her name looked like “mic-hell.”

blogNov01-6After dinner, Dad felt well enough to play a couple of games of Oh Hell: Dad won the first game and Mom won the second. We had two sets of criteria that determined how long we played cards: how Dad felt and whether he had dialysis the next day and how I felt and whether I had to work the next day. For the most part, I wanted to start Dad’s nighttime routine by 8:30 P.M. so that I could go to sleep by 9:30 P.M. A perfect night was one in which we all got six hours of uninterrupted sleep.

A perfect night was one in which we all got six hours of uninterrupted sleep.

 

The big trick: missing medications

October 30, 2015. The alarm woke me again this morning, which made two nights in a row that Dad, Gale, and I had slept through the night. Silence still made me a little nervous, so I checked to see that Dad was still breathing before I grabbed a cup of coffee and logged on to work. I worked until about 8:00 A.M. and then administered Dad’s morning meds. I then set up my two TV trays and changed out his trach. The bottom part of the trach was pretty crusty and partially obstructed, which was why the suction tube had stopped during his trach care last night. I felt so guilty. I reminded him again that being away from the bedroom nebulizer caused his secretions to dry in his trach, but the importance of the situation didn’t seem to resonate with him. Before I left the room, Dad asked me if I would be leaving and if Gale would take over. I told him that I was working on plans that would enable me to go home occasionally for a day or two.

halloweenBlog4Today started out pretty well for Dad—in fact, it seemed practically transformative. He was able to pull himself up in the bed with one hand, and his transfers from the bed to the wheelchair were much better. When Tracy, the nurse, stopped by at 10:00 A.M., she said that he was doing well and that his bed sore seemed to be healing. Janet, the occupational therapist, arrived about 90 minutes later and put him through the paces with some arm and core exercises. On her way out, she said that she thought that Dad was progressing very well.

The occupational therapy tired him, so he took a short nap after Janet left. Gale took advantage of his downtime and treated herself to a cat nap. Because Dad had slept so well the last two nights, she was less tired that she had been during her previous weeks here.

He took a couple of short naps during the day, but otherwise, he was up and about for the rest of the day.

It rained like a son-of-a-gun for most of the day. Shortly before dinner, I donned my boots and a rain jacket and ventured outside to read and empty the rain gauge. At the time, I emptied out 5 inches, and the rain showed no signs of tapering off.

halloween03Last Sunday I had purchased a couple of pumpkins from the church. Tomorrow was Halloween, which was Gale’s favorite holiday. She usually spent the day with her granddaughters and was a little disappointed that she was missing this time with them. I had searched the internet for her to find some Cheshire Cat makeup ideas for her granddaughter, and she had had a good time experimenting with them last week. I thought that carving pumpkins might make her feel more like she was celebrating. Before dinner, Gale and I spread newspaper over the island in the kitchen and attacked our pumpkins. While we were carving up a storm in the kitchen, a casserole was in the oven, and Dad was taking another nap.

I set up my camera on a tripod and attached the shutter release so that Dad could take pictures. When he woke up from his nap, he snapped a couple of pictures of Gale and me finalizing our masterpieces.

After dinner, we played Oh Hell again, and I won! Miracles do happen. We were finished with cards shortly after 8:00 P.M.

October 31. I had forgotten to set my iPhone alarm last night, but fortunately, an amazing thunderstorm woke me at 3:45 A.M. Beginning when Dad came home, I had been sleeping in the upstairs guest room that my parents dubbed the Vista Room. It has windows on three sides, and blinds are installed on the east side windows. Because my day started when it was still dark outside, I didn’t bother to close the blinds—I didn’t need to shut out the daylight. Consequently, when Mother Nature put on a light and sound show at night, I would wake up. My first thought after the clap of thunder that woke me was that the power had gone off, but I noticed that the power light on the baby monitor was still lit. With everything apparently OK, I thought that I should make coffee—just in case we did lose power. I guess if I could worry about coffee, things were improving around here.

halloweenBlog3The storm passed through the area pretty fast, and it wasn’t raining at 6:15 A.M. when Dad and Gale were picked up for dialysis by the EMTs. Because it was Saturday, Mom and I ate breakfast together and tried to catch up on some chores around the house. While our lives were revolving around Dad, our household was like a computer. Mom acted as the operating system that managed our primary functions, like shopping, laundry, cleaning, and meal preparation. I kept up with Dad’s appointments, meds, supplies, and trach care. The aides handled Dad’s most basic needs and monitored his safety, and Stan helped with the yard and filled in all of the gaps. He also provided the extra dose of testosterone in the house, which Dad needed.

While Dad and Gale were at dialysis, I drove to the S&W pharmacy to pick up another prescription of an antifungal for Dad and was shocked when the bill came to $399. When I asked the pharmacy clerk about the price, she said Medicare pays for only one refill of the drug each month. She then looked at our records and said that I had picked up this same prescription last week. I left the prescription at the pharmacy and returned home. halloweenBlog2Mom and I searched the house for the pills, but we couldn’t find them anywhere. We surmised that we must have inadvertently thrown out that prescription when we threw away the bag from the pharmacy. This was our first major system failure since Dad had come home. Mom and I opted to forget about the antifungal—for now. It was less than 45 days ago that we were told that Dad would die from a fungus in his blood. I didn’t like the idea of forgoing this medication. Tomorrow was Sunday and I would see Sue, the dialysis nurse practitioner, at church. I hoped that she might have some suggestions on what we should do. Meanwhile, we felt as if the tricking had started already, and not the treating.

At 11:15 A.M., an ambulance pulled into the driveway with Gale and Dad. Gale was pretty certain that this time beat the all-time record. Dad stopped by his bedroom long enough for his midday meds and trach care and then wanted to get into his office to review some financial paperwork with Mom. At 2:00 P.M., he returned to his room and napped for a couple of hours. While he slept, I made spiced pumpkin seeds from our carving session the previous night. I’m not a big fan of pumpkin seeds, but these were pretty tasty.

halloween01After our happy hour and a spaghetti dinner, I decided that we wanted a group Halloween photo, and I herded everyone outside to the front porch.

My parents have lived here for 10 Halloweens and have never been visited by trick-or-treaters, and tonight was no exception unless you included Stan and the mailman (who had had us sign for the delivery of Dad’s medical records, which included a bill for $732, which we considered a trick, indeed).

Because of the holiday, or because Dad was feeling pretty good and we knew that we’d gain an hour of sleep tonight at the end of Daylight Saving Time, we played two games of Oh Hell. I won the first round, and Dad won the second.

At 9:00 P.M. CDT, we started Dad’s nighttime routine. We seemed to be on a roll of good nights. I could always hear the drone of the equipment coming through the baby monitor, so my nights weren’t entirely peaceful, but I hoped that Dad, Gale, Stan, and I could sleep in just a bit tomorrow.

November 1. As we had all hoped, Dad slept until 6:30 A.M. standard time, which meant that we all were able to get that extra hour of sleep. He wasn’t in a hurry to get out of bed and was happy to lie in bed for a while longer. After hearing that the residents of the master bedroom were up and about, I donned my scrubs and went downstairs. Dad was in the bathroom washing his face and brushing his teeth, so I started the two coffee makers in the kitchen—one with fully-caffeinated beans and the other with the decaffeinated ones.

I took care of Dad’s morning meds and trach care, joined Mom and Stan for breakfast, and then Mom and I went to church. Before the church service started, we told Sue about our prescription mishap. She said that she was shocked that something like this had happened to us, and there wasn’t anything that she could do to help us. She added that she didn’t think that Dad still needed the antifungal. Feeling like a total loser, I prayed that Dad would not pay for our mistake.

While Mom and I attended church, Dad and Stan played a couple of games of cribbage. Dad might have been handicapped by a trach, a feeding tube, and his inability to swallow, but he could still beat Stan at cribbage.

halloweenBlog1I needed to get back to Houston periodically for a day or two. I had contacted a couple of services to see if we could hire nurses to handle Dad’s trach care, but we needed someone three times a day, and I couldn’t figure out how to make it work logistically or financially. I also learned that it wasn’t every nurse that was trained to handle the duties of a respiratory therapist. I had approached Gale a couple of days earlier to see if she would be willing to administer the meds and trach care for Dad while I was gone. I planned to have everything set up and documented for her. Administering the medication was pretty simple with our pill organizer and pill crusher. The trach care was a trickier issue. I was pleased when she said that she would try administering the trach care a couple of times to see if she could handle it.

Gale and I had our first trach care rehearsal after lunch. She did a great job, although I didn’t realize how much I relied on slipping my pinkies under the trach collar to place and adjust the trach dressing. Her fingers were a bit larger than mine, so we had to figure out a different way for her to adjust the dressing. I could tell by the way that she exhaled when she was finished that she had been pretty nervous. It was just over a month ago that I had to do this for the first time and I had been very nervous. Gale had been a caregiver for over half of her life, but this was her first time to suction secretions and change a trach dressing. I didn’t know how Dad felt about Gale stepping in, but outwardly, he was very supportive.

After the trach care, Stan returned to Houston to our home and cats. I had lost track of the times that he had made this trip, and I was always a bit on edge until I received his text message when he reached home. Every person in our little family was a vital player in our healthcare journey.

Mom, Dad, Gale, and I visited during happy hour, and after dinner we played another game of Oh Hell. After the game, Gale and I escorted the big winner to his room. I handled the trach care and Gale crushed the pills, mixed them with water, administered them into the G-tube, and flushed the line. By 9:00 P.M., Dad and Gale were ready for bed. Mom and I set up the ever-important coffee makers for tomorrow morning, and I called Stan.

Gale would be able to spell me in a couple of weeks, Dad seemed to be making good progress, and he had had a few good nights in a row. I was looking forward to another decent night’s sleep. Except for the apparently discarded antifungal pills, we seemed to be progressing pretty well.

 

 

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.