Day 148: Transitioning to Home Care

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

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

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

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

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

 

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Gale, Dad, and me

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

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

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

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

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

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

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

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

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

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

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

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

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

T minus 1 day and counting!

September 28, 2015. At 6:45 A.M., Mom, Stan, and I were waking up, and I wandered into the kitchen and started the coffee maker. Meanwhile, over at the CCH, Dad was setting off the bed alarm. When Connie, the night nurse, entered his room, she found him attempting to climb out of the bed. She lowered his knees to the floor and then called upon another nurse and an aide to help her get him back into the bed.

Because it was Monday, Dr. Smith was gone and Dad was in dialysis. Dr. Anderson returned as the attending physician. Mom and I had learned that he was returning and prayed that nothing would go wrong that would keep Dad from being discharged tomorrow.

So that I could visit with Dr. Concepcion, the nephrologist, before he left the CCH, I arrived at the CCH at 8:30 A.M. I also hoped to see Marty sometime during the morning. At 9:10 A.M., Jennifer, the RN who was training me, saw me in Dad’s room and called the dialysis room to let them know that I was waiting to see the doctor. He relayed that he would come down to Dad’s room to talk with me when he was finished with the dialysis patients. While Jennifer was still in Dad’s room, Dr. Anderson and Rachel, the nurse practitioner, stopped outside the door and talked. When they were finished, they both walked away without acknowledging my presence.

Dr. Concepcion and his fellow stopped by with hemodialysis and blood transfusion consent forms for me to sign on behalf of Dad. They told me that they had reserved a chair for Dad on the Tuesday/Thursday/Saturday schedule at 6:00 A.M., which was the only time available.  It wasn’t the best time, but at least Dad should be home before noon. The doctor said that Marty would arrange for the ambulance service between home and the dialysis center. He also said that because Dad tested once for the Candida fungus, Dad’s nephrologist, Dr. Issac, would place an order to have Dad’s dialysis catheter replaced. If Dad was still at the CCH on Wednesday, they would dialyze him then and then again on Thursday so that they could establish his schedule.

After speaking with the nephrologist, I contacted Marty. She said that she had faxed signed orders for a variety of services and tube feed. She told me that American HomePatient would call me to schedule a time tomorrow when they could deliver and set up the equipment. After speaking with Marty, I returned home. Dad wouldn’t be out of dialysis until after lunch.

questionmarksMoments after arriving home, Rachel called me. She said that she had just heard about our change in plans—most likely outside of Dad’s room. She said that the interventional radiology (IR) department would remove Dad’s PICC line while they replaced the dialysis catheter. She said that the nurses had been giving Dad Haldol in his IV at night for the last few nights, but that they would switch him to an oral version of the drug. She proceeded to give me another pep talk about the complexity of Dad’s care and the high risk involved. Similar to my many conversations with Marty, Rachel tried to dissuade us from our decision and admit him to a skilled nursing facility (SNiF) instead. I found this advice to be confusing. According to Rachel and the folks at the SNiF, Dad was not stable enough to be admitted, he was running out of Medicare coverage to remain in the hospital, and the VA could not admit another dialysis patient. We really didn’t have many options. The cynic in me wondered if they were trying to ensure that they weren’t liable for anything that happened to Dad on home care. I still hadn’t experienced the wonderfulness of this woman, about whom everyone at the CCH raved. She had never offered any assistance, solutions, or encouragement.

On the way to the CCH after lunch, Mom and I stopped by the Kings Daughters clinic to see Dr. Poteet’s nurse. Dr. Poteet had been Mom and Dad’s primary care physician (PCP) for a couple of years, but shortly before Dad entered the hospital, Dad had switched to Dr. Patil, another physician at the clinic.  The reason why Dad switched PCPs had become a nonissue, and Dad wanted to switch back to Dr. Poteet. The doctor’s nurse wasn’t available, but we were able to start the process of reinstating Dad as one of Dr. Poteet’s patients.

Mom and I arrived at the CCH at 2:30 P.M. By the time that we got to his room, Dad had been back from dialysis for about an hour. He told me that he needed to know the details about the move and what he had to do. I ensured him that he didn’t need to do anything and then said a silent prayer that he would do as he was told and stay in bed.

When Jennifer, the physical therapist, arrived, Mom and I left the room and waited in the hospital’s front waiting room. While we were there, Dr. Anderson passed us and didn’t acknowledge our presence. That was the second time that day that he had totally ignored us. In the 147 days that we’d been in the Scott & White system, we had never met anyone like him. Even the busiest person would nod or wave when passing you in the hall. We couldn’t wait to be away from him and his negative vibe. He, along with some of the other doctors at this place, insisted that Dad’s “mental status was abnormal and that he had evidence of dementia and delirium.”

Jennifer’s assistant found Mom and me in the lobby and told us that Dad was in a wheelchair, walking himself around the hall. When Dad was finished scooting around the hallways, he wanted to get back into the bed, but Jennifer told him to stay in the wheelchair and visit with us. Victor, the respiratory therapist, came by and showed me how to change Dad’s trach collar. Although the trach was changed every week, the trach collar, which held the trach in place, was changed daily. The important part of this process was remembering to always keep one hand on the trach so that it didn’t slip out of Dad’s throat. After I had changed Dad’s trach collar without decannulating or choking him, Jennifer, my trainer, showed me how to check for residuals in the PEG tube and how to clean his PEG wound. She and a couple of aides then moved Dad back to bed.

Around 4:45 P.M., Marty called me and told me that the hospital bed and medical supplies would be delivered to the house tomorrow morning. She also said that the Home Health nurse would stop by in the afternoon to admit Dad into Home Care and show us how to use the equipment. She added that Dad’s dialysis chair time had changed to 7:00 A.M., but he had to arrive at the dialysis center by 6:40 A.M.

229_PHS_logoI emailed Becky Crabtree at One On One Personal Care and let her know about the turn of events. Instead of helping us to care for Dad until he died, her aides would help us care for him as he recovered.

Jennifer then received the call from Marty about Dad’s discharge, which was scheduled for tomorrow. We said our goodbyes and hugged. We had spent a couple of whirlwind days together and I was extremely grateful for her patient guidance. I could understand why she was one of Scott & White’s top nurses.

As Mom and I prepared to leave for the day, we told Dad that tomorrow was an important day and that it was vital that he stay in bed tonight to ensure that nothing prevented him from leaving. He said that he would and we prayed that he would.

During dinner, we received a phone call from a woman who introduced herself as Gale, our personal care assistant. She would start tomorrow around 9:00 A.M., and needed directions to our house. Stan, Mom, and I discussed the logistics of the next day and decided that until Gale arrived, the three of us would prepare the house and run errands. After Gale arrived, she and I would go to the CCH while Mom and Stan stayed at home to accept the delivery of the hospital bed and medical equipment. We knew that tomorrow would be a busy day, and we turned in early. I didn’t realize it at the time, but this would be my last decent night’s sleep for a long time. Before I went to sleep, I logged on to Amazon.com and ordered my first set of scrubs: purple. Among everything else that I had learned this past weekend, I learned that health care was a dirty job.

Shortly before 10:30 P.M., Dad set off the bed alarm and Cassy, the night nurse, discovered him attempting to get out of bed. She was able to convince him to stay in bed. With all of the drugs that he was taking, I couldn’t believe that he couldn’t sleep through the night.

I could sleep through just about everything, except a ringing phone.

Caregiver in training

September 26, 2015. I saw Angela, the respiratory therapist, a few minutes after I arrived at the CCH at 7:35 A.M. She said that after she set up a couple of more patients, she would return to Dad’s room to continue my training. Jennifer, the charge nurse, was also tasked with training me this weekend. Her instruction started with having me administer Dad’s morning meds. We started with the pills, which I was to crush and mix with water. I then drew up the liquid mixture into a syringe and emptied it into the PEG tube. The other two meds were powders: the Renvela was for his kidneys and the Beneprotein was a nutritional supplement. According to Jennifer, I had to mix the Renvela with water and then squirt out 1/3 of the mixture into the sink. The entire sachet of Beneprotein was injected into the PEG tube. After injecting all of the meds and supplements, I flushed the tube with lukewarm water to ensure that nothing remained. So far, so good.

mapAfter Jennifer left the room, Dad asked me about “all of the buildings that he was going to travel through.” I explained to him that to get home, he wouldn’t travel through buildings, but that his ambulance would take him home via the Loop and 31st Street. I drew him a bad, oversimplified map of the area and explained where everything was and the distances between them. He had been hospitalized so long that he was confused, thinking that there was a difference between our house and our home. He then told me that it would be prudent to get him a bedpan, so I called the nurse and left his room.

While waiting in the hallway, I encountered Dr. Smith and conferred with him for a few minutes. While we were chatting, he told me that I was pretty lucky because Jennifer was one of Scott & White’s top 25 nurses of the year. I had just met her this morning and had already concluded that she was very friendly, supportive, and professional. I also didn’t pick up any vibes that she was judging me for moving Dad to home care.

2015_sepeclipse_028At 11:00 A.M., Angela returned, and my respiratory therapy training ratcheted up a notch. In addition to suctioning Dad today, she said that I would change out his tracheostomy tube. I had hoped to record the process with my camera, but I ran out of disk space before I was finished. Regardless of whether you were suctioning or changing out the trach, the process required a sterile environment. There was a specific way in which to open the kit and put on the gloves, which I thought would be my undoing. Putting on a pair of gloves so that you don’t touch and contaminate them was not as easy as you might think, and I felt like a complete doofus.

I had a tiny problem getting the trach tube into his throat, but I think it was because I didn’t insert it at the correct angle. I panicked a little; Angela took over, and it slid right in. She also showed me how to clean the trach that I had just removed and how store it for the next changeout. As if all those steps weren’t important enough, it seemed like the biggest lesson was that you had to ensure that you tightened the collar enough so that it wouldn’t come out, yet not so tight that you choked the patient. Being able to place two of my fingers between the trach collar and Dad’s neck seemed to ensure the correct fit. I was a little stressed out and I couldn’t believe that I would have to perform this procedure every seven days. Was it that long ago that I thought to myself that I couldn’t imagine having to change out a trach? Sheesh.

2015_sepeclipse_047While I was sitting with Dad, Angela returned to the room with printed instructions about how to suction and change out a trach. Dad was sleeping, so I decided to read the entire document. I write technical documentation for a living, and although I’m not diligent about always reading it, this seemed like a good time to read the manual. I was glad that I did. When Angela stopped by again, I told her that the two other respiratory therapists had had me insert the tubing much further into Dad’s trach than the instructions advised. She told me that she had noticed that I had performed deep suctioning on Dad, but that it wasn’t necessary. When I changed my suctioning technique, I found that suctioning didn’t hurt Dad the way it did with some of the respiratory therapists. I was glad that Angela was now my trainer. I recalled how Dad had told her that she was different from the other respiratory therapists and how he didn’t like others, like Victor. Angela had me suction Dad the rest of the day, and by the end of the day, I was somewhat comfortable with the procedure, although I still had to psych myself up for it.

I was glad when it was time to go home for lunch.

After I returned to the CCH from lunch, Jennifer and I got Dad into the wheelchair. The next time that Angela came in to suction Dad, she noticed that he was slouched in the wheelchair. She said that he was too bent for suctioning and she would wait until he was back in bed and at a better angle. I made a mental note to myself that the angle of his neck was important when suctioning the trach.

I was by myself at the CCH for most of the day. Mom was at home preparing the house, especially the master bedroom, for Dad’s homecoming. Stan split his time between performing chores at the house and running endless errands.

floor_matIf you spend any time at a hospital, you quickly learn that healthcare is a dirty business and the floor is difficult to keep clean. My parents’ house, including their bedroom, was carpeted with a beautiful sea green carpet. We were pretty certain that the carpeting would not survive Dad’s home care. One of Stan’s assignments was to figure out how to save the carpet. He eventually decided on chair mats. He bought out the supply of rectangular mats at Staples and Office Max and then worked out the arrangement of the mats in the bedroom. In addition to protecting the floor, the mats provided a relatively hard surface and protected the carpet from some of the heavy equipment and the wheelchair that would be brought into the room. He also purchased some shelving and boxes that we would need for storing medical supplies. Thank goodness my parents’ bedroom was large enough to accommodate everything.

By the time that the three of us met at home at the end of the day, we all felt like we had put in a full day’s work and were ready to make use of my parents’ bar.

September 27. I woke up at 5:30 A.M. and wandered into the kitchen to make coffee. I was surprised to find that my mother was already up and about. She told me that she had been awakened at 3:15 A.M. by a phone call from some college. The crank calls persisted until about 5:00 A.M. Before the annoying calls stopped, she had reached the point where she would answer the phone and immediately hang up. By the time that I woke up, she had done a lot of housework and was exhausted.

Mom and I arrived at the CCH at 9:00 A.M. Dad was awake and promptly told Mom that he had been trying to call her since 3:15 A.M. What Mom had heard was the audio caller ID announce wireless caller. The audio wasn’t all that clear, so you might imagine that it sounded something like Warless College, especially at 3:15 A.M. Mom might have appreciated the humor of the situation more if she had had 2-1/2 hours more sleep. My father could be a real pill with a phone. I don’t know if we ever knew why he was calling.

2015_sepeclipse_056Shortly after we arrived, I went to the nurses’ station to see Jennifer. She said that she had been waiting for me to arrive so that I could administer Dad’s morning meds. At practically the same time, Dr. Smith arrived and we discussed Dad’s feeding tube and his invasive lines. I agreed with the doctor that because of its upkeep and the potential for infection, we wanted the PICC line removed. It was used to administer IV medication and he had already changed Dad’s prescriptions so that he was no longer receiving any IV drugs. Dr. Smith said that if we had an emergency, we could use the dialysis catheter while trying to start another IV or insert a new central line. He said that nephrology wouldn’t like this option, but in a pinch the dialysis catheter would work. During our discussion I learned that Dad had been tested for the Candida fungus five times and had tested positive only the first time. It sure would have been nice to know this sooner. If I had had more time to think about it, I would have resented being manipulated by Dr. Ciceri. I still shudder when I thought about how close we came to withdrawing care because of misleading information.

I put on a hospital gown over my Sunday clothes and administered Dad’s morning meds. Mom and I left for church at 10:20 A.M. and once again, Stan stayed and visited with Dad.

When Mom and I had attended church last week, we had a very sobering and tearful meeting with our good friends, who I referred to as the church ladies. Our friends at church had prayed their hearts out for Dad, and they were heartbroken about his prognosis. As upset as they had been last week, they were thrilled today. They and Pastor Tom praised God about the miracle that had occurred.

Stan had a good visit with Dad and left the CCH when I called him at 12:25 P.M.

2015_sepeclipse_063I returned to the hospital at 2:00 P.M. to find that Jennifer and the aide were giving Dad a bath. When they were finished, Jennifer and I maneuvered Dad into the wheelchair. Jennifer thought that he was a bit weaker than yesterday and said that she wanted him back in bed in about an hour. It was a nice day, so after I had Dad cough up some secretions, we headed outside in the wheelchair. We strolled on all of the available sidewalks, which still wasn’t much of an outing, and then settled under the covered hospital entrance. While we were sitting out front, Stan and Mom drove up and visited. Stan could stay for only a couple of minutes because they had been grocery shopping and he had to get the perishables home. Mom and I visited outside with Dad until 3:25 P.M. Shortly after the three of us returned to Dad’s room, Jennifer, Hector, and I put him back in bed. Mom and I visited with Dad until about 4:30 P.M.

It had been another long day and Stan, Mom, and I were pooped. I had downloaded the Domino’s app to my iPad, so we ordered a pizza the 21st century way. We had ordered three pizzas since I had been staying there, which is more than I had ordered in the last 25 years. I loved to make homemade pizza, but desperate times called for takeout.

2015_sepeclipse_097Stan and I stayed up late to watch the total lunar eclipse (blood moon). While watching the moon, my dear friend Rhoda texted me to see how I was doing. I quickly called her to let her know about the miracle and our change in plans.

She was just over the moon!

 

Preparing for the other H word: Hospice

September 21, 2015. Mom and I arrived at the CCH at 8:15 A.M. Alyssa, Dad’s nurse, told us that my conversation with Dad the previous night had calmed him down and that he finally went to sleep with the assistance of a sedative. While Dad was still in dialysis this morning, we wanted to obtain a list of local hospice providers from Marty. We also wanted to be sure that we arrived before the nephrologist, Dr. Concepcion, left for the day. We told the receptionist that we wanted to meet with Marty and Dr. Concepcion, and went to Dad’s room to wait.

During the past couple of days, Dad had seemed to be in a much better mood and talked about his plans after his return home. The more excited he became about going home, the more depressed and heartbroken Mom and I became. We hadn’t told Dad that he was going home to hospice. Mom and I couldn’t decide when to tell him, perhaps because we couldn’t bear the truth of our situation. I also couldn’t bear to think of how he might respond.

When Dr. Concepcion arrived, we were stunned to learn that Dad had asked him this morning about alternatives to in-hospital dialysis, including at-home dialysis. The doctor said that he had explained to Dad that it would take a lot of time to set up such a system and that he could also get dialysis in a nursing home. He said that Dad was quiet for a moment and then was adamant that he would not go to a nursing home. The doctor told us that at-home dialysis would not be a reasonable option for Dad. Mom and I wondered how Dad processed the conversation with the doctor.

As Dr. Concepcion left the room, Marty stopped by and dropped off materials about local hospice providers. She also told us that the CCH could also provide hospice services, which to Mom and me seemed like the worst of all possible alternatives. Marty proceeded to warn us that the team was concerned about us taking care of Dad in his final days, especially with his trach. She made it clear that the nurses didn’t think that Mom could take care of Dad. In her curt manner, she proceeded to tell us that we would essentially be on our own with Dad’s care and blah, blah, blah, and that the hospice nurse would stop by for only a short time each day. I felt like I needed an ACE inhibitor after most of her lectures.

I made a couple of phone calls and narrowed down the list to two hospice providers. Mom and I met with Sheila and Heather at Interim Health Care, which is located just down the street from the home of Mom’s friend Marilyn. I really liked these women and felt that Interim would provide great care, but Mom and I agreed that we should meet with someone from the Scott & White organization. When we returned to the CCH, we contacted Scott & White Hospice and scheduled an appointment for later that afternoon. Their office was across the parking lot, so their representative said that she would call me when she left her office.

Dr. Randall Smith returned today as the attending physician. When we met with him, he told us that Dad was still suffering from delirium. He told us that when he visited with Dad during dialysis, Dad told him that he wanted to clear his accounts and pay his bill. The doctor tried to tell him that he wasn’t involved with payments, but Dad wouldn’t listen to his protests. Instead, he handed the doctor what Dad said was a check, but was actually a napkin. We also spoke briefly with the doctor about the hospice plans. He said that it would be much easier for us if we would have hospice services provided in the hospital, but we wouldn’t entertain that suggestion.

familyTreeWe met with the representative from Scott & White and although she seemed very professional and they would provide a good service, we were sick and tired of this organization and wanted to cut our ties with them. I confess that I entered the interview with a somewhat closed mind and I didn’t note the name of the person whom we interviewed. I wish that I had because I owe her a debt of thanks. Knowing that we would need some very expensive assistance, she gave us the name of a company that provided 24×7 care. The company was One on One Personal Homecare, owned by Becky Crabtree. Her name resonated with me because I have Crabtrees in my family tree. I didn’t realize it at the time, but this referral was a godsend.

Shortly before Mom and I reentered Dad’s room, he attempted to get out of bed. Alyssa was able to convince him to stay in bed. A few minutes later, Andrea, the respiratory therapist, continued my trach care training. This task was well out of my comfort zone, and I performed it tentatively at best as Andrea talked me through the process. By the time that I had finished the trach care and suctioning, it was time for Mom and me to return home.

Mom and I discussed the day over drinks. She said that she thought that she needed to tell our closest neighbors about Dad. Because they had been so kind to us throughout this ordeal, she felt that we should let them know.

September 22. I originally hadn’t planned to stay in Temple yesterday, but I wanted to help Mom interview hospice care providers. So that I could arrive in Houston before noon, I left my parents’ house early in the morning. I was going to live at my parents’ home until my father died, and I needed to wrap up a few things and gather some of my personal items. Stan and I had already made plans for someone to take care of our cats, so I didn’t need to worry about them or the house. My father’s birthday was on October 6. I didn’t know why it seemed so important to me, but I held out hope that he would live to see 87. Based on estimates from doctors and friends, he might die on his birthday.

In our conversation with the doctors, we had stipulated that we wanted Dad to receive physical therapy while he was in the hospital. It might have been silly on our part, but we wanted just once to be able to get him into a wheelchair at home so that we could wheel him around his property and the house that he designed.

Mom arrived at the CCH at 9:15 A.M. Marty stopped by a little later to see if we had selected a hospice company and to confirm that we still wanted Dad to receive dialysis on Monday. Mom confirmed with her that we definitely wanted dialysis and told Marty that after she heard from me, she would provide her with our hospice selection. I had wanted to contact Interim first to ensure that they could accommodate us, and then I would give Mom the go-ahead to tell Marty and turn down the other provider.

Marty contacted Interim and faxed them the necessary information about Dad. She then called me to see when I would be available for training. I let her know that my plans had not changed and that I would be there Friday afternoon for two full days of training on Saturday and Sunday. After her call with me, Marty asked the charge nurse if she would have the nurses and respiratory therapists start training Mom on the tube feeds, suctioning, meds, and some of his personal care so that she could see what it would be like to care for him at home. It was like they were waging emotional warfare against us.

By 2:00 P.M., when Dad still hadn’t received physical therapy, Mom searched for the physical therapist and found Jennifer, her assistant. According to Jennifer, Susan, the physical therapist, had decided that Dad would not receive any more physical therapy.

Some time later, Mom was confronted by Susan and Marty, who insisted that it was not a standard practice to build up a patient before discharging him to hospice. They told Mom that her expectations were not realistic. Marty reiterated that taking care of Dad at home would be very difficult, especially with trach care and tube feeds. Mom defensively told them, “Don’t worry about me. We will hire whoever we have to!” Marty pressed Mom to know who she had hired. Mom told her that we had not hired anyone yet, but we would. When my mother became visibly upset, Marty apologized for questioning her, but she just wanted to be proactive to ensure that Dad would have everything that he needed. When Marty told Mom that the nurses would start training her to care for Dad, Mom said that Interim would provide a nurse. Marty challenged her and said that Interim’s nurse would not be there to tend to Dad’s daily needs. When Mom started getting upset again, Marty ended the inquisition and left. A few days earlier, Mom and I didn’t know much about hospice, but somehow the reality of the service wasn’t jiving with what we had heard. Whenever I heard stories about hospice, I seemed to recall references to kind caregivers. For some reason, I assumed that they were part of the hospice service.

Susan insisted that Mom and I would not be able to get Dad into a wheelchair, suggested a Hoyer lift, and proceeded to demonstrate its use to Mom, but Mom was not swayed. Eventually, Susan said that she would change her ruling and that Dad could have physical therapy. True to her word, she stopped by later that day and, with the assistance of a walker, Dad got off of the bed and pivoted into the side chair. As was often the case when Dad sat upright in a chair, he coughed up a lot of secretions.

After the gang of providers left, Mom and Dad had a good talk, but not about hospice.

Marty had arranged with American Home Patient to have the hospital bed and equipment delivered on Monday, September 28, four days from now. To transform their bedroom into a hospital room, Mom wanted to get rid of their king-size bed and have the room thoroughly cleaned. She planned to call her neighbor, Sharon, to see if she could provide the name of a housekeeper and also planned to call the Salvation Army to see if they could pick up the bed on Friday.

September 23. Michelle, Dad’s night nurse, found Dad awake at 4:30 A.M. with his legs hanging over the side of the bed. When she tried to assess his mental status, he refused to cooperate and told her, “I’m not going to do that anymore. You answer for me.” He then told her that when he left the CCH he needed to take the trash can that we kept in the closet. When he pointed to the closet where the trash can was kept, he pointed to the hall. Michelle didn’t think that Dad was trying to get out of bed, but when she asked him to keep his legs in the bed, he called her a troublemaker. He became a little perturbed with her when she raised the side rail on his bed, but he seemed to be sleeping by the time she left his room.

While Dad was in dialysis, Mom called the Salvation Army to schedule a pickup, but they could not come by until Monday. Fortunately, Good Will could accommodate her schedule and agreed to pick up the bed on Friday.

basicPhoneBefore she left the CCH yesterday, Mom left her cell phone with Dad so that he could call her if necessary. He called her early in the morning to see if she was awake. He then called her later in the morning to tell her that someone had broken his electric shaver. He could be a pill with a phone.

When Mom arrived at the CCH, she spoke with Susan, the physical therapist. Susan and Mom agreed that Dad was too weak after dialysis for therapy, but she said that she would try to get Dad into a traditional wheelchair tomorrow.

I called Dr. Smith to ensure that Dad would indeed receive physical therapy tomorrow. Mom’s conversation with Marty and Susan the previous day had upset her, and she didn’t need the daily dose of aggravation. I couldn’t imagine what difference it could make if Dad received one or two days of physical therapy if it could make even one of his remaining days more enjoyable for him. Dr. Smith assured me that Dad would receive the promised therapy.

Mom called Adan to see if she and I could meet with him when I returned on Friday. I’m not sure why she needed to see him, but I was anxious to meet him.

Andrea, Dad’s night nurse entered his room around 11:30 P.M. and saw that he was attempting to get out of bed. When she questioned him, he said that he was “going to do stuff.” She explained to him that it was almost midnight and encouraged him to stay in bed, which he did for most of the night.

 

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.

 

Sorta better, but not so much

September 8, 2015. Before Mom arrived at the CCH, Stacy, Dad’s nurse, informed the physical therapist that the doctor didn’t want Dad to receive physical therapy today because of his hypotension. Dad’s blood pressure had been low since his dialysis session yesterday. Dad’s WBC count was still within the normal range, although in four days it had inched upward from 6.9 to 9.2. The assumption was that as long as his WBC count was within the normal range, his hypotension was not caused by an infection.

When Mom arrived, Dad was in good spirits and they had a nice visit before she had to leave for a couple of appointments with her own doctors. She met today’s attending physician, Dr. Carl Boethel, and had time for only a brief visit with him before she had to leave. She learned that the results of Dad’s blood cultures had come back negative. We never really understood the significance of the blood cultures, but we always welcomed negative results.

During the weekend, Mom, Stan, and I had tried to brainstorm some alternative solutions for Dad’s diminishing Medicare coverage. It finally dawned on us that Dad was a veteran of the Korean War, and the VA hospital was located between my parents’ home and church. Instead of fighting the practically impossible odds of getting him admitted into the SNiF before his benefits expired, we thought that we’d see if we could get him transferred to the VA hospital. On the day that we had left Memorial, I had overheard a conversation about a patient being transferred from Memorial to the VA hospital. I recalled thinking that I hadn’t thought that the VA hospital was an option. If transferring from Memorial to the VA hospital was an option, we hoped that transferring from the CCH to the VA hospital was also an option. When Mom arrived at the CCH, she told the receptionist that she needed to speak with Marty, but Marty was home taking care of a sick child.

When she returned from her appointments with the neurologist and dermatologist, Mom asked Dad if he had met with the physical therapist. When he said that he had not seen her, Mom intercepted the therapist when she exited from the adjacent room. It was then that Mom learned about the doctor’s orders to suspend therapy for the day. Mom and I were very concerned about Dad’s weakened condition and Mom was not happy that he had remained in the bed all day. Both of my parents wanted Dad to get out of bed and onto the chair. Mom tried to get the nurses to move him to the chair, but to no avail. The fact that he had been restrained since Mom left for her doctor’s appointment didn’t help their mood either.

Mom undid Dad’s restraints a couple of times during the remainder of the day so that he could use the Yankauer, but he had a difficult time handling it and tore it apart.

As if he knew that he was needed, at 4:00 P.M. Pastor Don called Mom to see if he could stop by for a visit. He arrived at 4:45 P.M. and the three of them had a nice visit. Visits from men outside of the medical industry seemed to have a calming effect on Dad and diminished his delirium during the visit.

With all the drama surrounding Dad, it would be easy to forget about Mom’s issues. In addition to her recent stroke, she had also been battling bouts of skin cancer. I was pleased when I learned that she received gold stars from her dermatologist and neurologist.

September 9. Today was my wedding anniversary and I was at home in Houston with Stan. At the CCH, Dad woke up disoriented, and when he arrived at dialysis, Suzanne, his dialysis nurse, thought that he seemed very confused. Statistically, it wasn’t much different, but his WBC count had ticked up by the smallest amount. Although his WBC count was still within the normal range, I was apprehensive about the trend. It seemed that I was the only one who was concerned, and I was 160 miles from the action.

Mom was able to spend a few minutes talking with Dr. Whitney Prince, today’s attending physician. She told Mom that Dad was scheduled to receive the PEG tube tomorrow.

After Mom left for the day, Andrea, Dad’s night nurse, found him with his legs hanging out of the bed, which was practically his default position. The way that he kept sliding down the bed, you’d think that he slept on silk sheets. Other than that little intervention with Andrea, Dad slept through the night without any drama.

September 10. Because of his scheduled PEG placement today, Dad was NPO when the morning shift started. While Dad was waiting for his transfer to Memorial for the procedure, Marty told my parents that she had faxed his clinical records to the Marlandwood West nursing facility. According to Marty, they told her that because Dad was taking antibiotics, they could not accept him. She also said that the dialysis center would prefer that he require less suctioning before they would accept him. The hand restraints were also a blocker. Unfortunately, we couldn’t make Dad understand the problems that he caused with his repeated attempts to get out of bed. He now had only 22 days of hospitalization Medicare coverage. We hoped that the VA hospital would turn out to be a viable option.

At 10:30 A.M. the Scott & White paramedics arrived and transported Dad to the Interventional Radiology (IR) department at Memorial. It seemed that he didn’t have a set time on the IR schedule and Dad had to bide his time until 1:15 P.M., which was when they prepped him for the procedure. The procedure went well, and he finally returned to his room at the CCH at 3:40 P.M. My mother was told that he still had to use the nasal tube for another 24 hours, and then he should be able to start using the PEG.

Mom stayed at the CCH for a short time after Dad returned before she went home for the evening.

September 11. At 3:30 A.M., Andrea, Dad’s night nurse, discovered that Dad had disconnected the tube from his new PEG. She didn’t notice any visible damage to his abdomen as a result of his handiwork, and she reconnected the tube. He eventually went back to sleep and slept until his nurse woke him for dialysis. Suzanne, the dialysis nurse, noticed that he had thick white secretions, and although his WBC count was still within normal range, in two days it had inched up to 9.9 from 9.3. In the period of a couple of weeks, his WBC count had increased from 6.5 to 9.9. I understood that I had to look at the whole person and should not concentrate on the numbers, and blah, blah, blah, but the trend of these lab results made me a little nervous.

Dr. Whitney returned today as the attending physician and she stopped by to assess Dad during dialysis.

When Mom arrived, she noticed that Dad was tightly restrained to his bed. When she asked why, she was told that Dad kept trying to pull out his trach. Dad’s speech was slurred and Mom could barely understand him. His oxygen saturation had been low, so his speaking valve was removed, which made communicating with him even more difficult. Speaking valves block a small amount of air intake, so if he wasn’t getting enough oxygen, removing the speaking valve could solve the problem.

Jennifer arrived in the late afternoon for his physical therapy session. At first, Dad said that he didn’t want physical therapy today, but Mom persevered and he participated. Once he got started, he seemed to enjoy the session. After he performed the bed exercises, he was able to sit on the edge of the bed and move around on the bed and swing his legs. Before Jennifer left, she and the nurse put Dad in the Stryker cardiac chair and he slept in the chair for about an hour, with his hands restrained to the chair.

Mom was a little frustrated with the day. According to the whiteboard in Dad’s room, he was supposed to have the nasal feeding tube removed today, but John, Dad’s nurse, was hesitant to remove it. Finally, at 4:00 P.M he started the tube feed through the PEG, but he still didn’t remove the nasal feeding tube. Mom had also wanted to talk with Marty about having Dad transferred to the VA hospital. Unfortunately, Marty didn’t come to work today so Mom would have to wait until Monday to talk with her. At 4:45 P.M., Mom found John and told him that she was leaving for the day.

I had left Houston after work and arrived at my parents’ home in time for an update on Dad and a much-needed glass of wine before dinner.

img_1194September 12. Mom and I arrived at the CCH at 8:00 A.M. Dad was still restrained and his call button was on the floor. John, Dad’s nurse, told us that his heart rate had been elevated to 135 and he became tachycardic. After they gave him some vasopressors, his heart rate returned to a more normal 68.

John said that Dad had had a good night, but when I asked him about the restraints, he said that Dad had tried again to decannulate himself, so the restraints had to remain.

When the new attending physician, Dr. Veronica Brito, stopped by for a pre-round check, we asked her about the restraints and the possibility of getting Dad into the Stryker chair. We had never met this doctor, but she told us that she was on the regular rotation with the CCH. Because of vacations and some shift changes, we had missed seeing her during Dad’s earlier stay at the CCH. She told us that the nurses didn’t think that Dad was strong enough to get in the chair. I was annoyed and she and I had an intense discussion about exercise, restraints, and dialysis. I told her that we wanted a plan to get him off of the restraints and that it was one of the issues that was keeping him here. She said that he had other problems that were keeping him here–like his dialysis. I told her that the dialysis wasn’t keeping him here and that primary thing keeping him from West was the restraints. She said that he was still very sick and that we had to respect his health. I told her that at Memorial, it seemed very important for him to get in the chair every day, even if three nurses had to drag him to it. I told her that I couldn’t understand why getting out of bed didn’t seem important at the CCH.

At 10:30 A.M., I was surprised when John and Hector, an aide, moved Dad from the bed to the Stryker chair. John said that he didn’t think that Dad should go outside where he couldn’t be monitored by the nurses. Mom and I wanted to see how Dad fared in the chair this morning, and if Dad’s vitals remained within a good range, maybe we could take him outside this afternoon. Shortly before we left for lunch, a nurse stopped by and finally removed Dad’s nasal feeding tube.

When Mom and I returned after lunch, Dad was in the Stryker chair and John and Hector prepared him for our cardiac chair road trip. His invasive devices had to be unhooked from the wall and attached to mobile-equivalent devices. Mom manned the oxygen tank and I drove the chair. We weren’t permitted to go outside, but we explored every hallway in the building. We chatted a lot, although I couldn’t understand most of what he said. He said that he was glad that I was there because he said that I was his tiger, compared to Mom, who he said was more like a kitten. Statements like that proved how little he knew about Mom’s role and daily battles on his behalf. If we could ever get him out of this place, I’d have to address some of his misperceptions.

Mom and I left the CCH at 4:45 P.M. and Stan arrived at the house shortly after we returned to the house. This was another one of his short trips in which he would take care of the yard, sit with Dad while we were at church, and then return home. We told Stan about the day and the new attending physician. Although we had had an intense discussion with her, she seemed to listen to us. All in all, it had been a pretty good day.

 

Waxing and waning cognition

August 25, 2015.  Dad had a good night, and by “good,” I mean that he stayed in bed and didn’t try to pull out any vital devices. Dr. White thought that Dad was pleasant and could answer most of his assessment questions, but Dad’s cognition waxed and waned, depending on the time of day. The doctor said that until Dad regained some of his strength, he wasn’t going to consider red-capping the trach, let alone removing it.

The healthcare providers weren’t the only ones who thought that Dad was confused about his whereabouts. Dad thought that he was at home and Mom had to explain to him that he was at the hospital and home was where she went at the end of every day.

Another of Dad’s problems was severe protein calorie malnutrition. I felt partly to blame because I had practically insisted that they reduce his tube feeds during dialysis. I couldn’t help how I felt. There was no way that Dad could survive another aspiration event.

OLYMPUS DIGITAL CAMERAMom had been encouraged yesterday when Dad seemed interested in signing the paperwork necessary to obtain matching funds from Shell for the Locke Academic Scholarship at CMU. Unfortunately, although he was still very interested in the scholarship, he couldn’t sign his name. Mom gave him a pen, but he didn’t seem interested in practicing, either. She thought that perhaps she could sign the form for him if they could get a notary to witness his intent and consent. Mom told the CCH chaplain of their predicament and he said that a notary public worked at the CCH. He said that he would see what he could do for them.

When she was notified about Mom’s request, Marty, from the administration office, stopped by Dad’s room and told Mom that because of Dad’s mentation problems and confusion, the CCH’s notary could not witness any signatures on his behalf. She went on to say that because finances were involved, the notary at the CCH could not notarize the patient’s document. Sometimes Marty annoyed the heck out of me. Instead of simply stating that the CCH was not permitted to notarize financial documents, she made a point of stating that Dad was not of sound mind. The bottom line was that he could have been as sharp as a tack, and they wouldn’t have been able to help my parents. I could not understand why so often the staff at this facility felt the need to go above and beyond to demoralize patients and their families.

At 1:30 P.M., Jennifer, the physical therapy assistant, stopped by for Dad’s therapy. Dad told her that other than a pain in his right shoulder, he was feeling pretty good today. He also kept mentioning to her that he had a document that he needed to get notarized. Jennifer had her work cut out for her to keep Dad focused on his exercises, but she was able to get him to finish some bed exercises and to sit on the edge of the bed. She had to use her hand to keep Dad from falling over on the bed. She wasn’t able to get him to stand up, but after he finished his physical therapy session, Jennifer and Carrie, the nurse, put Dad in a cardiac chair that they referred to as the Stryker chair. This chair was totally cool and much different from the cardiac chairs at Memorial. It had four wheels that turned independently of each other. When you pushed him in this chair, you had the flexibility of moving sideways and in circles. Unfortunately, you could also move in those directions when you were trying to move in a straight line. Today he simply sat in the chair in his room.

A couple of hours after Mom went home, and at the time of the shift change, the bed alarm sounded in Dad’s room. The night nurse, Debra, hurried into Dad’s room and found him on the floor. Evidently, he had decided that he could get out of the bed to use the bathroom. As soon as he stood up, he pretty much sat down on the floor. With the assistance of another nurse, Debra got him back into bed and reset the bed alarm to its most sensitive setting.

Less than three hours later Dad’s bed alarm sounded again. This time, Debra reached Dad’s room before he got out of bed. She reminded him again that he needed to use the call button when he needed assistance. Before leaving the room, she raised three of the side rails on his bed. Because Dad often scooted down the bed and sort of slid out of the bed through the open rail, I asked if it could also be raised. I was informed by the nurses that raising all four rails was synonymous with restraining a patient, at least in the eyes of Texas law.

Dad was able to stay in bed for the remainder of the evening.

August 26. Today marked another ominous milestone. It was the 90th day since Dad started dialysis, which officially made him ESRD (end-stage renal disease), or dialysis dependent. The 90th day was also dialysis day and Rebecca, his nurse,  darkened his door at 7:00 A.M. and wheeled him up to the dialysis center for another eight-hour session.

When Mom arrived at the hospital at 11:30 A.M., she learned that Dad’s WBC count was down to 6.5, which was very normal. Dad’s room was empty, so she asked when the patients usually returned from dialysis. Rebecca said that he would be finished sometime between 1:00-1:30 P.M. Instead of waiting for a couple of hours in his room, Mom decided to drive over to Memorial to speak with the Scott & White SeniorCare Insurance representative. Dad was fast approaching what we were told was the end of his hospitalization insurance coverage and Mom needed to learn more about where he stood and what sort of options were available to us.

Shortly after Mom returned to the hospital she learned about Dad’s escape and attempted escape from the bed last night.

 

pict0143
Jim’s three sons

After Dad returned to his room, he asked Mom about his brothers and how many boys his middle brother, Jim, had. He also told Mom that he had been taken away to some special place. Mom explained to him that he had been having dreams and that he hadn’t been taken anywhere, except for dialysis, which was located in the CCH. After Mom clarified the confusion about Dad’s nephews, they seemed to have a more coherent conversation.

 

newsweek-trumpWith the exception of a couple of golf tournaments, Dad hadn’t been watching any television since May 6. To catch him up on the latest political happenings, Mom brought him the Newsweek magazine that had Donald Trump’s picture on the cover. At the time, Mr. Trump still didn’t seem like he’d make it to the general election, let alone the White House.

Before Mom left for the day, Pastor Don stopped by for a visit. He always seemed to instinctively know when to stop by and cheer up my parents, and he provided the perfect end to Mom’s day at the hospital.

August 27. The blood test results that I used to live by now seemed to be hanging out in the normal zone. You’d think that I would have started to exhale, but I was still very worried about the infection that seemed to lurk in his lungs. It didn’t help matters much that Dr. White had requested another consult from infectious diseases. We hadn’t seen Dr. Sangeetha Ranganath for a few weeks. Mom didn’t catch everything that the doctor said, but Mom did hear that she changed Dad’s antibiotic.

A few days earlier, Dad had had me write down 16 exercises that he planned to perform to build up his strength. Before I returned home to Houston, he had instructed me to leave the list of exercises in his room where he could find them. He seemed months away from being able to perform any of the exercises, but when Jennifer stopped by today for his physical therapy session, he was fixated on them. He kept telling Jennifer that he wanted her to find the exercises for him to complete. She finally was able to redirect him to the task at hand and got him to perform some of the bed exercises, but he flat out refused to perform sit-stands or sit in the chair; in fact, he insisted on getting back into bed. She and Mom both tried to explain how these exercises were important for building his strength, but their pleas fell on deaf ears. Who knows; maybe he wasn’t wearing his hearing aids. Mom was very discouraged. She and I were desperate for Dad to build up his strength, yet he seemed unwilling to participate.

The hospitals were starting to take a toll on Mom. During the past month, she had developed a cough that she couldn’t seem to shake. The danged place was always cold, and she and I kept sweaters in Dad’s room. Throughout the day, she popped cough drops to soothe her throat.

August 28. I drove to Temple this morning and arrived at my parents’ house while my father was still on dialysis. Mom and I met briefly with Dr. Heath White before Dad returned to his room. The doctor said that he had met with Dad earlier and he seemed to be feeling pretty well today. As usual, he mentioned Dad’s waxing and waning delirium, but he also mentioned that his WBC count was holding steady at 6.5. Dad was a little late returning to his room because he had been scheduled for a chest CT scan immediately after dialysis.

The doctor recommended that they replace Dad’s nasal feeding tube with a PEG, which is inserted into the stomach through the abdominal wall, rather than the nose. My father-in-law had had a terrible experience with the PEG, which heavily influenced me to avoid it. I also was concerned with my father’s penchant for pulling out vital invasive devices. Pulling out a nasal tube is one thing; pulling out a PEG would be something far more serious. We told Dr. White that we would consider his recommendation. He was now the third doctor who had recommended this procedure. I surely wish that we had gone the PEG route during his initial stay in Memorial. Perhaps he wouldn’t have aspirated if he had had a PEG. We’d never know, but I had my suspicions.

Dad seemed to be in good spirits when he returned to his room. I hadn’t seen him for several days, and he seemed glad to see me again. We spent a few minutes catching up on the past week, but our conversation deteriorated into a discussion about him leaving. No matter what Mom and I said, he couldn’t understand why he couldn’t go home today.

I decided to leave the room for a few minutes and stopped by the business office to talk with someone about Dad’s remaining benefits. I knew that Mom had spoken with them while I was in Houston, but I was still confused about where we stood and what our options were. Marty was available and she explained that Dad had 35 more days of hospital coverage. She also explained that we would be able to get 100 days of coverage from a skilled nursing facility (SNiF). Other than the fact that I knew that one of my cousins had been in a SNiF, I didn’t know much about them.

Shortly after I returned to the room, Jennifer stopped by for a physical therapy session with Dad. He greeted her by telling her that he felt that he could stand and sit in the chair in his room, versus the cardiac chair. However, she hadn’t been in his room very long before he started complaining of fatigue, which was common for dialysis days. He also told her that he wanted to go home today. Although patients usually get into the Stryker chair from a lying-down position, Jennifer said that she would show Dad how he could stand and pivot into the chair from the bed. Dad felt that he was up to the task and was surprised when he couldn’t do it. Jennifer tried to use his failure to complete the task as a teaching moment about the importance of physical therapy, but I didn’t think that it did much good. She was able to transfer him to the chair after she put a gait belt on him.

Dad stayed in the chair for the remainder of the afternoon. Considering how dialysis usually saps his strength, he was having a pretty good afternoon. While he was still in the chair, the respiratory therapist stopped by and said that his breathing had improved and that they probably would not need to put him back on CPAP tonight.

Around 4:00 P.M., I called for Michelle, his nurse, to help move him back into bed. Dad had had a full day and was starting to get tired. Except for the few tense minutes of discussion about leaving, we had had a pretty good day. Mom and I left the hospital hoping that Dad would sleep well.