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.

Another trip to the emergency room

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Caring for the man who would not sleep

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Oh, Candidiasis!

September 18, 2015. Dad started his day in dialysis after having spent an uneventful night asleep. According to his early morning lab results, his WBC count was 12.1, up from 11.1 If only the WBC count was the worst of the lab results. Dad’s blood culture came back positive for Candida parapsilosis. When he saw the lab results, Dr. David Ciceri called Mom to tell her about the findings of the blood culture.

It being Friday, I was working in my home office in Houston. I was going to Temple the next day. This was an important weekend for me to be in Temple because I wouldn’t be returning for a couple of weeks. The stress of the past few months was taking its toll, and I was looking forward to this coming Wednesday, five days from now, when my husband and I would join my best friends in Wisconsin for the belated celebration of my birthday. The trip itself was a birthday gift, and we had been planning it since June.

Around noon, my phone rang, and the caller ID told me that it was my mother. We spoke every day, but I always initiated the calls. During the past 136 days, a phone call from her had indicated bad news. Today’s call was no exception. According to Mom, Dr. Ciceri told her that Dad tested positive for some fungus in his blood that was fatal, and could I come to Temple now?

After Mom’s phone call, I dashed off a quick email to my manager, telling her that I was leaving. I was somewhat packed for the weekend trip, so I grabbed what I could and left the house within 30 minutes of her call. The all-too-familiar drive to Temple seemed more like an eternity than three hours.

Dad returned to his room around 1:15 P.M. He had been a little confused earlier in the day but seemed to be in good spirits. His dialysis session had been pretty easy on him. He had no edema when he arrived at dialysis, so his blood was cleaned and only 342 ml of fluid was removed, which was about 15 percent of normal. Jennifer stopped by for Dad’s physical therapy session but was told by the nurse that Dad was having blood drawn.

imagesWhen I arrived, I met Dr. Ciceri and he explained to me that Dad had something that sounded like “the Canada fungus.” He said that they planned to replace his dialysis catheter and his PIC line. The doctor had also started Dad on an antifungal. He said that he requested a TTE (transthoracic echocardiogram) for later today. I didn’t understand the significance of most of what he said, but I clearly understood what he said next. He said that Dad’s prognosis was extremely poor, that he probably had one to two months to live, and would most likely die in a nursing home.

The doctor went on to say that given Dad’s prolonged illness and advanced age, as well as his current condition, it was extremely unlikely that Dad would ever improve to the point that he could go home. As we discussed options with him, Mom was adamant that Dad would not want to go to a nursing home. With so few choices, we finally ended this terrible conversation with a plan to bring him home on hospice care. The doctor said that having Dad at home on hospice care would be difficult and would require that Mom and I be able to care for him. After assuring him that home was the only option for us, the doctor said that he would instruct the nurses to start training me tomorrow. In retrospect, I can’t believe how fast we made this decision to abruptly shorten my father’s life.

I don’t know how we did it, but we visited with Dad for a couple of hours before heading home for the evening. Mom and I were shell-shocked and there were more than a few tears shed over our drinks that evening.

September 19. Dad seemed to be in good spirits when Mom and I arrived this morning and announced that he was retiring from this place, adding that he figured that he had another 10 years left in him. His voice also sounded good and he seemed to be handling his secretions with little difficulty.

Mom and I had been adamant that we could not move Dad to a nursing home, but I thought that I should give our knee-jerk decision a second thought. When we spoke with Dr. Ciceri this morning, I asked him whether a nursing home might prolong Dad’s life by months or years. He said that a nursing home might extend Dad’s life by a couple of months. He explained that dialysis was tough on patients in their 80s and 90s. When I asked him if it would be possible to extend Dad’s time at the CCH so that I could take my trip, he said that they should be able to accommodate that request. Looking back, that request was probably one of the more selfish and embarrassing moments of my life.

We concluded our conversation with Dr. Ciceri by telling him that he was one of only a couple of doctors at the CCH that we trusted, the other doctor being Dr. Smith. Coincidentally, he and Dr. Smith were partners. He explained that he and Dr. Smith were very similar, but that Dr. Smith was much more of an optimist. He liked to think of himself as a realist.

After Dad and I exchanged morning pleasantries, he initiated a couple of very strange conversations. He spoke at length about a dialysis tech by the name of Penny Nickel. When I challenged him, he insisted that such a person really did exist. I wished that we had spent more time talking about the phantom Penny, because the following conversation was somewhat shocking and very disturbing. Dad told Mom that he needed to know the names of her other children. My parents started dating shortly after high school, were married in their early 20s, and I’m their only child. At first, my mother thought that he was kidding, but he was very serious. He assumed that he would have some financial responsibility for these other offspring and so he needed to know what he was dealing with. No matter how Mom protested, he insisted that she was lying. We finally diverted his attention to another subject.

Shortly before noon, Andrea, the respiratory therapist, stopped by Dad’s room to demonstrate how to suction Dad and perform routine trach care. She told me that she would have me perform the trach care when I returned this afternoon.

When Mom and I returned home for the day, Mom was very upset that Dad believed that she had had other children. She said that she couldn’t bear the thought of him dying thinking that she had lied to him about other children.

Mom and I were having a difficult time living with our decision, and we tried to think of alternatives to our dreadful plan. We found a website that addressed home dialysis. We thought that perhaps we could have Dad at home and extend his life with dialysis. When I searched the website, I learned that Scott & White provided home-based dialysis. Mom and I decided to talk with the nephrologist and Dr. Ciceri tomorrow to see if we could explore other alternatives.

September 20. Mom and I arrived at the CCH shortly after 9:00 A.M. I located the doctor and told him that Mom and I wanted to discuss some other options, such as home-based dialysis. Without skipping a beat, he said that this was a bad idea. Among other things, he said that this option would be expensive because Medicare would not pay for dialysis for a hospice patient. He said that he would speak with Dr. Concepcion, the nephrologist, for his recommendation. Regardless of their recommendations, our plan was for Dad to continue dialysis treatment and physical therapy until he was discharged to hospice.

Dad was sleeping when we entered his room, but it was obvious to us that he had been awake earlier in the morning. Everyone we encountered mentioned some earlier conversation with him and that he seemed to be in a good mood. He finally woke up just before Mom and I left for church. Before we left his room he reminded Mom that he still wanted the list of her other children.

After church, we spoke with our friend, Sue, about at-home dialysis, and she agreed with the doctor that this was a bad idea. She said that the training would take four to six weeks and that the patient also has to come to the dialysis center each day during the training. She recommended that we stop Dad’s tube feed when he returned home. Her suggestion seemed a little cruel, but she explained that continuing to administer nutrition would only cause swelling and discomfort and would ultimately shorten his life. She thought that we might prolong his life by one to two weeks without the nutritional support.

After church and lunch, we returned to the hospital around 2:30 P.M. We were in Dad’s room for only a few minutes before he initiated another lively discussion about Mom’s other children. It took me some time, but I finally convinced him that there weren’t any other children.

With the help of the nurses, we got Dad into the Stryker cardiac chair around 3:30 P.M. The weather was unseasonably nice, so I took him outside. The warm weather and breezes lulled him to sleep in about two minutes. I wheeled him all over the hospital, but he never woke up. Around 5:00 P.M., Pam, today’s respiratory therapist, stopped by to teach me how to clean and suction the trach. It was a little nerve-wracking, but I accomplished the task without waking him. Forgetting that Dad had been able to sleep through all sorts of torturous procedures, I considered my first attempt at trach care to be a phenomenal success. Mom and I finally left the CCH around 5:40 P.M., and Dad never woke up.

After we returned home, I had a come-to-Jesus meeting with myself and reached an obvious decision: I couldn’t travel to Wisconsin with my friends and leave my mother to deal with Dad’s situation. I wrote the painful email message to my friends, telling them that my father was going to die in hospice care and that we’d need to change our plans. They knew my parents and were distressed when they read the terrible news. One of my friends had been my wing woman when Mom had her stroke. It was hard to believe that this ordeal was going to end like this.

My phone calls to my husband were a blur of changed and new plans. He and I had both planned to travel to Wisconsin, and he helped cancel our travel plans. Because we had already planned vacation time for September 25 through October 1, we’d spend that time in Temple with my parents.

phoneAt 9:40 P.M., I was awakened by the house phone, and  I ran to answer it before it woke Mom. As far as we were concerned, there was nothing worse than a nighttime phone call. My parents’ phone system had an audio caller ID. My heart practically stopped when I heard it announce that the call was from Scott & White. The call was from Jeliza, Dad’s nurse. According to her, Dad insisted that he wanted to go home and that he had seen Mom in the hall. He kept calling out for her, and the nurse couldn’t calm him. She hoped that my mother or I might be more successful. Jeliza held up the phone to Dad’s ear while I explained to him that we had been in his room until 6:00 P.M., but that he had been asleep. He asked me when we would return to see him again, and when I said, “tomorrow,” he asked if we’d come by early. When I told him that we’d see him after dialysis, he said that he wasn’t going to dialysis anymore and that he would go someplace else. I explained that going someplace else would require advance planning and that we couldn’t make alternative plans on a Sunday night. I promised him that Mom and I would be there and that I’d visit with him before I left for Houston. He agreed to that plan and we said good night. The nurse took back the phone and thanked me for talking with him.

 

One step forward, two steps back

 

September 5, 2015. When we opened the Temple Daily Telegram, we were greeted with the unfortunate news of another Scott & White doctor dying, this time in a climbing accident. Scott & White had now lost two doctors during Dad’s hospitalization.

I arrived at Dad’s room at 9:45 A.M. The window shades were open, but the lights were off and he was still asleep. The first thing that I noticed was that he was restrained with his wrists bound to the side rails, which prevented him from being able to call for assistance or suction himself. I used the call button to call the nurse, but she cut me off while I was speaking. I was pretty annoyed when I called her, but being cut off mid-sentence really irked me. I stormed out of Dad’s  room to the nurses’ station and told the nurse that if she was going to leave him in a helpless state, I expected her to stop by his room every 15 minutes to tend him, or loosen the restraints to the point that he could suction himself. The nurse and respiratory therapist accompanied me back into Dad’s room. The three of us were followed by the charge nurse, who gave me a dressing down for yelling at her nurses at the nurses’ station. I wasn’t yelling, but there was no doubt that I sounded very annoyed. As I walked back to Dad’s room, I asked them if they possessed any humanity at all.

As Dad woke up, he started becoming agitated about his restraints. He also kept saying that he was done here and wanted to leave. Who could blame him?

At 10:20 A.M., Alyssa, his nurse, stopped by to tend to a wound on his right foot.  She also tended to his oral care for the morning. Dad wasn’t wild about having his teeth cleaned, but he finally let her do it.  I tried my best to explain how important oral care was to his situation, but he didn’t believe that we were helping him.

At 10:40 A.M., a couple of nurses stopped by to reposition him. I had to remind them to give him enough slack in his restraints so that he could suction himself.

lumen60I left the CCH at 11:40 A.M. to have lunch at the house with Mom and Stan. They had stayed at the house to do some yard work.  Mom had found a couple of snake skins, which I took to use with some of my lumen printing. I thought that they might add a nice touch to my fig leaf prints.

Mom and I returned to the hospital at 2:00 P.M. Dad kept wanting to get out of bed, and I kept trying to get him to understand that he had to follow the rules and stay in bed or else they would restrain him. Alyssa then told me that Dr. Anderson wanted Dad restrained 24/7.

At 2:45 P.M., his feeding tube became clogged. Alyssa couldn’t clear it, so she went to enlist some help from Melissa, another nurse. While she was out of the room, Victor, the respiratory therapist, came in to clean Dad’s trach dressing and to suction him. Dad had mentioned to me that he didn’t like this respiratory therapist. He would insert the suction tube down the trach to the point that Dad would gag, then he’d sort of giggle and push it deeper until Dad’s legs would shake. It was a disturbing spectacle to watch and wasn’t typical of all of the respiratory therapists.

While he was in the room, Victor told us that Dad was still be being suctioned a few times a day. Until Dad could remove his secretions better, they couldn’t contemplate red-capping him.

After Victor left, I gave Dad a bunch of pep talks about coughing and suctioning to the point that he asked me if I was his cheerleader. Sometimes I could be a little over the top, but I felt like I was practically willing him to improve.

At 4:10 P.M., the nurses came back to Dad’s room to try to clear out his clogged feeding tube. They tried moving him around in the bed to see if the movement would help clear up the clog. They then loosened up the tie on his right hand so that he could use it to hold the Yankauer, his suctioning wand. After they had given him some slack in the restraints he said that he usually used his left hand for the Yankauer, which made the nurses laugh. They changed the restraints again so that he could suction himself with his left hand.

Mom and I left for home around 4:30 P.M. Dad looked so lonely. I hated to leave him. On the way out, one of the nurses told us that he had asked her for scissors. When she told him that she couldn’t do that, he told her that she wouldn’t have to tell anyone about it. Everything about Dad’s behavior seemed so surreal. He was delirious to the point that he was like a different person, but occasionally his sense of humor surfaced. Even the nurse thought his request was funny.

Stan treated Mom and me to a dinner at J&B’s. After dinner, we stopped back by the hospital to say goodnight to Dad, but he was asleep. The only person who saw us was Victor.

I was so worried about Dad and his restraints. I just couldn’t envision the doctor ever having them removed. Of course, it would have been nice to see Dr. Anderson so that we could discuss it. When we did catch sight of him, he just walked by without acknowledging our presence.

Although Dad’s hands were restrained, his feet weren’t. Three times during the night, Connie, his nurse, found him with both of his legs dangling out of the side of the bed. Before putting his legs back in the bed, she tried to convince him that he needed to keep his legs in the bed.

September 6. Before we went to the CCH, I emailed three of my best friends about an upcoming trip to Wisconsin that was scheduled for late September. The trip was a birthday gift from my girlfriends and I was looking forward to the break. My Dad’s condition had been a little touch-and-go recently, but I was still hopefully optimistic that he would be well enough for me to feel comfortable leaving him for five days.

img_1190Mom and I arrived at Dad’s room around 9:15 A.M. Dad was getting an IV for a heart flutter. I asked the doctor about his restraints and about his plan for removing them. Because the Seroquel didn’t seem to be addressing his delirium, the doctor told me that he was switching him to Risperidone. He said that Dad pulled out his feeding tube three times overnight. I believed him at the time, but there was nothing in Dad’s chart that supported such a statement. When I asked about what was keeping him at the CCH, he said that they needed to check to see whether the dialysis center would take him.

In the last day or so, it seemed that Dad had lost his manual dexterity, which affected his ability to suction himself. It was hard to watch him fumble with the Yankauer and not be able to hold it up to his mouth. Mom and I agreed that we should ask the doctor to see if Dad could have some occupational therapy to help regain his ability to suction himself.

Mom and I left for church shortly after 10:00 A.M. and Stan stayed with Dad during our absence. At church, the sermon was about waiting. Sometimes it seemed like the pastor wrote his sermons specifically for us.

After lunch, Mom and I returned to the hospital around 2:00 P.M. Dad announced that he was ready for a ride in the chair.

Michelle got him in the Stryker chair, showed me how to use it, and we took off. It’s a wild chair with wheels that move independently of each other, so you can move sideways. With Mom in charge of the portable oxygen tank and me in charge of driving the chair, we went up and down the halls, out the front door and back in. I also took him towards the back of the hospital and out the delivery doors, which was where he entered this place via ambulance. The doors opened easily enough to let us out, but they did not reopen when we tried to return. As long as we were outside, I tried to give Dad the lay of the land. When my parents first moved to Temple, they lived just a short distance from this facility. He really had no concept of where he was, and I think that he enjoyed the time outside and the mini geography lesson.

silksuns_thumbWhen we were ready to return to the air conditioning, I tried the back door buzzer, which notified the nurses’ station that someone was at the receiving entrance. The nurses kindly told me that it wasn’t safe to go out that door. I took Dad out for one more spin, but through the front door. When we returned to his room, he said that he wanted to go back to his room. I told him that he was in his room. To orient him to his surroundings, I backed him out of his room and pushed him back in. I also showed him his sunflowers and told him that as long as he saw those flowers, he was in his room. He then fell fast asleep. We called Michelle, his nurse, to tell her that we were leaving. She fastened a gait belt around him so that he wouldn’t slide out of the chair and said that they would move him back to bed before the shift change. Mom and I then left at 4:30. We stopped off at HEB and picked up a pizza for our dinner.

Labor Day, September 7. Mom and I arrived at the CCH at 1:00 P.M. Dad usually returned to his room from dialysis between 1:00 P.M. and 1:30 P.M., so we were surprised to see him and Michelle, his nurse, in the room. The lights were off, with the only light coming from the small windows. Michelle was at his bedside with a couple of vials of blood in her hands. She said that he had had a bad morning and that his blood pressure had dropped and his MAP had dipped into the 50s. Because of his low blood pressure, they ended his session an hour early. They removed only 64 ml of fluid, a tiny amount, and had just cleaned his blood during the session. She said that the normal dose of Midodrine that he usually took for his blood pressure didn’t help so they started him on some vasopressors, which finally increased his MAP to 65. The doctor ordered a blood workup to see if Dad was developing a sepsis condition. The nurse said that he was rousable, but he seemed pretty knocked out to us.

Michelle said that he had been more responsive before dialysis, but he was becoming less responsive. When the nurse tried to get a response from him, he scowled in pain, but wouldn’t open his eyes. The nurse said that they would check his venous blood gases and that they also ordered some blood cultures, but they wouldn’t get those results for a couple of days. The doctor came back and said that Dad was like just this before he got sick last time, which didn’t make sense to me because his condition had been improving before he aspirated in July. He added that Dad might be in septic shock again, but he didn’t know why yet. In the meantime, he ordered an additional broad-based antibiotic—in addition to the one that he was already taking.

Stan and I had traveled to Temple in one car and I hadn’t brought my computer with me, so I couldn’t stay in Temple. We had planned to leave at 2:00 P.M., but I asked Stan if we could wait an hour longer. I hated to leave my parents with my father in this condition. I left Dad’s room and called Mom’s friend, Marilyn, to see if she could stop by to stay with Mom for a while. Like a true friend in time of need, she said that she would arrive by 3:00 P.M. When I returned to his room, he started to wake up. He quickly got annoyed with the pneumatic compression devices (PCD) on his legs, and he asked why this keeps happening to him.

The doctor also suspected that Dad had acquired CDiff. Until they received the results of that lab work, they had to assume that he had it. While we were in Dad’s room, the nurse taped an isolation sign on the door. I stayed and visited with him a little longer, and then  I told him goodbye, and he kissed me goodbye.

Mom was very concerned that the doctor caused Dad’s worsening problems. While she was probably wrong, we sensed some attitude from this doctor, and found the following note from him in Dad’s chart:

words_sept7

Stan picked me up at the CCH shortly after 3:00 P.M. and I said goodbye to Mom and Marilyn.

Stan and I encountered heavy traffic during our drive back into Houston. It seemed as if everyone was returning to Houston at the same time. When we got to Buc-ee’s, about 40 miles from home, Stan stopped for a beverage. While he was inside, I called Mom to check on Dad. She said that he was doing better and that Michelle had rolled him onto his side, and he fell asleep. What was interesting about this news was that Dad had always slept on his side, and this was probably the first time during his hospitalization that he was rolled onto his side. His myriad devices and restraints had been forcing him to sleep on his back.

 

 

 

Talk about your obstacle courses!

August 29, 2015. Dad’s day started around 5:00 A.M. when he was visited by Mary, a wound care nurse. The CCH wound care nurses not only tended to wounds, which you might expect, they also trimmed nails and would give Dad a shave. Neither Dad nor Mom was a fan of facial hair, so they both felt better after he received a spruce up from wound-care nurses.

img_0978When Mom and I arrived at the CCH at 7:45 A.M., Dad was sleeping. A few minutes later, the respiratory therapist woke him, finished his breathing treatment, and administered his oral care. While she was finishing her session with Dad, Dr. White arrived. He and I stepped out of the room and discussed a treatment plan for Dad that would enable him to transfer from the CCH to a skilled nursing facility (SNiF) before his hospitalization benefits expired. If we could get him into a SNiF, he could receive up to 100 days for rehabilitation therapies. When I met with Marty yesterday, she and I agreed that we would like to see him leave the CCH within a couple weeks so that he wouldn’t use up all of his lifetime reserve days of Medicare coverage.

Dr. White thought that Dad had some challenges that could prevent him from transferring to a SNiF. The doctor thought that the feeding tube would be a problem, along with Dad’s mentation and diminished strength. He also suspected that the trach tube might be another obstacle, but he wasn’t sure. He did say that based on the CT scan from yesterday afternoon, Dad’s lung condition was improving.

The doctor said that he could start the process of removing Dad’s trach tube, but he’d been moving cautiously in that regard in case they needed to intubate Dad again. I asked if Dad could start receiving swallow therapy and he said that he’d request a swallow evaluation on Monday. Dr. White said that he’d have Marty give us a list of SNiFs so that we could contact some of them to get an idea about the goals we needed to meet to transfer Dad by Oct. 1st. I told him that I’d like to aim a little higher and get him transferred sooner. He also said that Dad’s nights had been uneventful since he got out of bed a few days earlier. He also said that he would meet with Rachel, the nurse practitioner, to see if she could offer any insight into conditions that could prevent him from being admitted to a SNiF.

When I returned to his room, Dad asked to see his list of exercises. When I couldn’t lay my hands on it, he became somewhat annoyed and agitated that it was lost. I finally got him to calm down when I assured him that I’d help him redo the list.

He grimaced a lot during the morning and finally told us that his shoulder was hurting him a lot. We called for Christine, the nurse, and requested some pain medicine. A few minutes after she gave him the meds, he started complaining about sharp pains in his head. After conferring with the nurse, we suspected that the pain in his shoulder was radiating to his head. After the pain medicine took effect, he stopped complaining about pain.

Kevin from x-ray stopped by around 10:00 A.M to x-ray Dad’s shoulder. While Mom and I sat in the waiting room, I told her about my conversation with Dr. White. She didn’t want Dad to go to a SNiF, and said that she and Dad had promised each other that they would not institutionalize each other. I hadn’t expected this response. A good friend of hers had checked herself into a SNiF during her convalescence from hip surgery. I had no intention of institutionalizing Dad, but we were running out of hospitalization benefits and had to find a place where he could complete his recovery. I told her that not using a SNiF would mean that she would have to hire caregivers to come to the house. She probably would not be able to leave him alone if he was at the house. I was also pretty sure that Medicare would not cover this expense. She said that she didn’t care and would be willing to do what was necessary to keep him out of a nursing home. We dropped the subject for the time being when we returned to Dad’s room.

Dad was a lot more comfortable when the bed extension was on his bed. Unfortunately, when the extension was on the bed, the bed wouldn’t fit into the elevator, so most of the time, the extension sat in the corner of the room. Because the weekend afforded him a couple days without elevators, Christine attached the bed extension.

Dad fell asleep pretty fast when the pain meds kicked in, which seemed like a good time for Mom and me to slip out for lunch.

When we returned after lunch, Dad was lying diagonally in the bed. After Christine got him resituated, Dad and I spent much of the afternoon redoing his exercise routine. I had to talk him down from some of the exercises that he used to do in boot camp some 65 years ago. I hoped that he would be as gung-ho at execution as he was during planning. So far, the physical therapist could barely get him to stand up on the side of the bed.

The three of us watched some of the golf tournament in the afternoon, but Dad had received more pain medicine and he kept drifting off to sleep during our conversations. After one such dozing off at 4:45 P.M., Mom and I went home.

Mom and I continued our tense discussions about moving Dad from the CCH to Marlandwood West, which was a SNiF in the neighbor that, on paper, seemed like a great option for him. Mom still wasn’t convinced, and she was also very concerned about the upcoming week because Dr. Anderson would be returning as the attending physician. It was probably just a freakish coincidence, but nothing seemed to go well for Dad when Dr. Anderson was there. With all that we had going on, I decided to stay in Temple a little longer. Instead of going home on Sunday, I agreed to stay through 4:00 P.M. on Monday. In addition to seeing Dr. Anderson, I would try to stop by Marlandwood with Mom and check out the facility. At this point, we had been arguing about what we envisioned the environment to be like. We needed to see it first-hand.

While Mom and I were at home discussing rehab options, back at the CCH, Dad was attempting to get out of bed so that he could use the bathroom. Luckily, Andrea, the night nurse, intercepted his escape and convinced him to remain in bed. Fortunately, Dad stayed in bed for the remainder of the night.

August 30.  Every morning that he was in the hospital, Dad received a briefing of sorts from the nurse about the importance of staying in bed and using the call light when he needed assistance. From what I had witnessed so far, Dad had not taken these daily briefings to heart. Truth be told, between his delirium and some of his meds, I doubted that he could remember these chats with the nurses for more than a few minutes.

Mom and I arrived at the CCH at 9:05 A.M. to find that Dad was still sleeping. We learned that Dr. White was making his rounds, but he had already been to Dad’s room. We woke Dad and eventually convinced him to wear his hearing aids and wear glasses. Glasses and hearing aids might not seem like a big deal, but wearing them wasn’t always a given with him. Stan arrived at 10:00 A.M. to spell me and Mom while we attended church.

The church service lasted 15 minutes longer than usual, so we didn’t arrive home until 12:30 P.M. We were surprised that Stan wasn’t already there, but he arrived shortly after we arrived. Dad had been asking about the finances, but they were on his computer, which I had disconnected so that I could work from his desk. When we finished lunch, Stan hooked up Dad’s computer again in case he asked me to look up some financial information for him.

After saying goodbye to Stan, Mom and I returned to the CCH at 2:00 P.M. When we entered Dad’s room, we found that Angela was in his room and Dad was partway out of the bed. I tried again to see if we could raise the fourth rail but to no avail.

We had not been able to speak with the doctor today. When we asked Carrie if she could find him for us, she said that Dr. White had left the building. We had seen him walk by several times, so either she was misinformed or he had left and had subsequently returned. Regardless, we never saw him again.

For most of the afternoon, Dad slept while Mom and I watched the Barclay’s golf tournament. I hated that he slept so much, but at least we weren’t arguing about the importance of staying in bed or why he couldn’t go home. Mom and I finally left for home shortly after 4:30 P.M.

August 31. Mom had a doctor’s appointment this morning, and when she returned, she and I drove to Marlandwood, the SNiF that was located less than three miles from my parents’ house. Like many nursing facilities, it housed rehab patients who were building back their strength so that they could safely return home. Half of the facility was devoted to permanent residents.

While at the Marlandwood facility, Mom and I visited with Stacy and Colleen, representative of the facility, about moving Dad. We weren’t wild about the semi-private rooms, but we were impressed with the respiratory therapist and the PT and OT personnel. They seemed devoted to building up their rehab patients for their safe return home and they had no qualms about any of Dad’s conditions that we raised. Mom and I were very optimistic about Dad’s situation until we returned to the CCH and talked with Rachel, the nurse practitioner. According to her, Dad could not receive offsite dialysis with a trach unless he could remove his own secretions. She also said that he would need to be able to change out his trach, should a problem arise during dialysis. She reminded me that having the four rails up on the bed was considered restraint, and a SNiF would not accept him if he had been restrained. It was a terrible conversation. I know that everyone loved Rachel, but she had never offered up anything but obstacles. We never heard a single suggestion from her to help us in our plight.

dohAt 2:55 P.M., Holly stopped by for a bedside swallow assessment. She came armed with ice, grape juice, and pudding, but Dad totally refused to participate. I couldn’t take it for another minute. After trying unsuccessfully to get him to exert any effort, I yelled at him and left the building. By 3:05 P.M. I was in my car and on my way home. Between the numerous obstacles and his inability to overcome them, I was frustrated to the breaking point and I felt like I was about to explode. I stopped by the house to pick up my computer and drove home–fuming all the way. Once again, it seemed like Dad’s biggest obstacle was Dad.

 

 

So much for that great start

August 21, 2015. Dad’s day got off to an exciting start at 1:30 A.M. when the central monitor alarm sounded, indicating that Dad’s heart had stopped. Dad’s nurse and the charge nurse rushed into Dad’s room and found him to be very agitated. He had disconnected all of his leads and had removed his central line dressing. When the nurses explained to him that they needed to replace the leads, he struck one of them and refused to have his leads and dressing replaced. They tried to convince Dad about the importance of monitoring his heart rate and keeping his central line covered to prevent infection. Dad would not cooperate with the nurses and demanded to speak with the doctor. The nurses contacted the on-call physician and the staff nurse, both of whom came to Dad’s room. Dr. Henry, the on-call doctor, sat with Dad and talked with him for about 30 minutes. During that time, Dr. Henry told Dad that if he continued to pull out wires and lines, they’d have no choice but to restrain him. To that threat, Dad said, “Well, I’ve been restrained before.” They sedated him, put him back on CPAP support, and he eventually went back to sleep.

Img_0992Today was dialysis day, so Mom and I spent the morning at home doing chores and picked 284 tomatoes from the vegetable garden. We had picked so many tomatoes this summer that Mom and I were eating tomato sandwiches every day—sometimes twice a day. We arrived at the CCH at 12:30 P.M. and encountered Dr. Smith in the lobby. He told us about how Dad had acted out overnight. He said that Dad’s MRI was not normal, but added that the MRI for an 86-year old was not normal anyway. Because the MRI wasn’t conclusive, the doctor didn’t know whether Dad’s acting out was transient or permanent. Although they could sedate him at night while he was on pressure support, they really couldn’t sedate him when he was off the ventilator. What was disturbing about last night’s event was that Dad was lucid and that he knew that he was in the hospital. Dr. Smith said that Rachel, the nurse practitioner, was working for the next couple of nights, so he’d have her check in on Dad.

Regarding my request to have the tube feeds suspended during dialysis, Dr. Smith said that Dad’s feed rate had been reduced to 10 ml per hour during dialysis, which was a compromise between what I and Dad’s dietitian wanted. The minimal tube feeds probably weren’t in Dad’s best interest, but Dr. Smith understood my fierce concern about reducing the risk of aspiration.

During dialysis, Dad didn’t seem to exhibit any of the distress or agitation that he exhibited five hours earlier. Susan, the dialysis nurse, remarked that Dad had been very talkative during dialysis and told her about his cardiac history.

When I spoke with Dad’s nurse, Cassie, she told me that Dad had remembered her and said something like, “Long time, no see.” She said that some of his conversations would be lucid and then he would drift off to some other topic. She said that he mentioned something about seeing “Dorothy” and someone else, but Mom and I couldn’t think of who that might be. After hearing that he had also spoken about being at Jim’s house, Mom and I assumed that he was speaking about his brother, Jim, and Jim’s wife, Dora. Both Jim and Dora had been deceased for a few years.

Cassie also said that she’d check to see if Dad could be scheduled for Seroquel at night. Before I left for Houston, Cassie told me that his WBC count was 9.0, which was normal. As least something was normal.

I headed home for Houston with a heavy heart. I had been so optimistic last evening and now I was pretty concerned. Not only did he seem to be a totally different person, it now seemed as if Dad was his biggest threat to his own recovery.

Susan, the physical therapist, stopped by during the late afternoon to assess Dad’s condition and set up his goals. Dad’s strength had continued to weaken and his balance was impaired. His first goal was to be able to transfer from the bed to a chair.

Shortly after Susan left the room, Chris, the occupational therapist arrived to perform his assessment and establish goals. Unfortunately, Dad needed to progress with his physical therapy before he’d strong enough to work with the occupational therapist.

By the time Mom arrived home from the CCH and called me, I was at home in Houston. During the day, when Dad was asked where he was, he replied that he was at Walt’s house or maybe Jim’s house. Mom had to tell him that both of his brothers had been dead for several years. During their conversation, he brought up the subject of using the bathroom. During their bizarre conversation, it became apparent to Mom that Dad thought that you used the bathroom by getting on a table. When Mom explained that a table wasn’t involved, Dad wanted to know how it worked. Mom explained about toilets, and she had to spell the word. He proceeded to refer to toilets with a French accent. When they finally got off of that subject, Dad expressed an interest in getting into a wheelchair and going outside.

Fortunately, Dad had an uneventful night and didn’t require any restraints.

August 22. At 9:05 A.M., Cassie, Dad’s nurse, entered Dad’s room to find that he had decannulated himself. Just the thought of it made me queasy. Cassie called for the respiratory therapist, who reinserted his trach tube. This made two days in a row that Mom was greeted with a distressing update from Dr. Smith as she entered the CCH.

When Mom entered Dad’s room, Dad was sleeping, and he slept until 3:00 P.M. When he woke up, the respiratory therapist replaced Dad’s speaking valve. As was so often the case, the conversation turned to the subject of the bathroom. Dad insisted that all he needed was two strong men and he could get out of bed and use the bathroom.

After Mom left for the day, Dad stayed on the trach collar until 7:30 P.M. It seemed that Dad had another uneventful night. I didn’t know if he was tired from dialysis and physical therapy or if he was under the influence of his antipsychotic medications, but he slept through the night. At this point, I didn’t care why he slept. I just wanted him to get through the night without hurting himself.

Img_1012August 23. Sundays at the CCH were pretty uneventful. There was no dialysis or therapies and you didn’t see the doctors after the morning rounds unless there was a problem. You’d think that the parking lot would be full of cars, but the CCH wasn’t teeming with visitors. The place seemed empty, dark, and depressing. The doctors at Memorial had told me on more than one occasion that a primary reason for transferring Dad from the ICU to the CCH was so that he could be exposed to more light. These rooms had small windows and even with all the light on, the rooms still seemed dark.

After Mom attended church, she stopped by the CCH to see Dad. He seemed to be in pretty good spirits and wanted to talk to me. Shortly after I had eaten lunch, I received a call from Mom. She handed her cell phone to Dad. He and I tried to talk, but he couldn’t hear me very well. It seemed that he wasn’t wearing his hearing aids, so he handed the phone back to Mom. I was happy to hear that he had had an uneventful night and that the day was going well for him.

August 24. Dad’s day started with dialysis. He was starting to become confused about where he was during dialysis and it often seemed to him as if he was leaving the building or going through a series of tunnels. The trip to dialysis was actually a trip down a short hall and an elevator ride to the second floor. On this day, they removed 2,300 ml of excess fluid during dialysis, which reduced his weight from 152.9 to 144.5 pounds. On May 6, he entered Memorial weighing 161 pounds, which was a reasonable weight for a 6’1” adult male. He seemed like a shadow of his former self.

As we had been told before Dad’s transfer from Memorial a few days earlier, Dr. Heath White was back at the CCH as the presiding physician. He had now been the presiding physician for my mother during her hospitalization and for my father at each admittance at Memorial and CCH. He probably felt like we were stalking him. Dr. White found Dad to be pleasant, but confused. Dad’s WBC count was now 6.6, which was very normal and considerably lower than it was the last time that Dr. White had seen Dad and predicted his death.

Dialysis leaves most dialysis patients tired, and Dad was no exception. When Jennifer, the physical therapist assistant, stopped by at 3:30 P.M., Dad was too tired to participate. Mom asked if they could make sure to stop by on days when he didn’t have dialysis.

Cayaana, Dad’s night nurse, found Dad’s mentation to be somewhat impaired. During the start of her assessment, he seemed to be aware of his whereabouts and his situation, but after about 30 minutes, she found that she had to remind him about where he was.

Dad’s mentation problem could be challenging and was raising concerns for Mom. In particular, in honor of my mother, my father had been funding a scholarship for outstanding political science majors at Colorado Mesa University. Shell, my father’s employer for 30+ years, matched my father’s contribution. The deadline for submitting the application for 2016 was approaching. Before she left the CCH for the day, my mother mentioned the deadline to Dad. Mom was pleased to see that this topic sparked a few moments of clarity and he said that he would sign the application tomorrow.

Fortunately, his night was uneventful and he did not require restraints.