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!

 

Wait. What? You’re kidding!

September 24, 2015. I contacted One On One Personal Homecare Services and provided Rebecca Crabtree, the owner, with a brief story about my father. In inquiring about her services, I wanted her to understand a little about the circumstances that put us in this terrible situation. Her company provided aides who worked seven on and seven off. Ideally, a couple of aides would be assigned to you and they would trade off on Tuesdays. This 24×7 service was provided at the bargain-basement price of $1,106/week. Based on my research, the going rate for aides was about $30/hour. If you could get someone to spend nights with you, you’d likely pay more than $5,000/week. Following a couple of email exchanges, I signed a contract for her services to begin on September 29.

After contracting One On One, I contacted Sheila Rogers at Interim Hospice and told her that we had arranged for aides to assist us with Dad’s care. The aides would provide personal care services, but I would provide the trach care.

Dad’s day started off a little rough when he insisted that he would get out of bed. He was very agitated and combative when his nurse, Alyssa, told him that he had to stay in bed. She finally administered some medication to calm him.

Susan, the physical therapist, arrived at 9:00 A.M. for Dad’s therapy session. She was not in favor of our desire to have Dad transfer into a wheelchair when he was at home, and she provided a demonstration of the Hoyer sling. At the end of his therapy session, Dad was able to use the walker to stand up from the bed and back up into a traditional wheelchair. He piloted the wheelchair as he and Mom went outdoors and visited for almost 45 minutes. Alyssa caught sight of them a couple of times during their meandering visit through the CCH facility and noticed that they seemed to be having a pleasant visit.

Shortly after lunch, Mom had another confrontation with Marty — this time she was insisting that Mom needed to learn how to take care of Dad. Considering how Marty had told me earlier that the nurses didn’t think that Mom could take care of Dad, I found it interesting that she was now pressuring Mom to learn. I was just a little miffed about this confrontation. I thought that we had agreed that I would be trained. I couldn’t help but think that the confrontation had more to do with trying to dissuade us from taking Dad home than training Mom.

Marty called me after this confrontation with Mom and told me that my mother was being very defensive. Mom had already told me about their encounter, so Marty’s call wasn’t a big surprise. I told her that my parents had been married for more than 65 years and that my mother was going through the worst time in her life. I thought that the least that she could do was give my mother a little slack as she tried to prepare herself to be a widow. I had once asked the nurses if they had any humanity and it seemed like a lacking commodity at this place. The thing that my mother needed most was a hug, not the endless grief that she seemed to receive from some of the providers at this facility.

According to my mother, Marty took my comments to heart and she and my mother shared a tearful moment back in Dad’s room.

Shortly before 3:00 P.M., to prepare for his haircut, Alyssa and another nurse helped Dad get back into his wheelchair. Mom’s stylist, Gina, arrived at the appointed time and gave Dad his much-needed haircut. When she was finished, Mom thought that Dad looked a lot more like his old self. Dad thought that the haircut was “OK,” and said that he looked forward to getting a better haircut from his barber. The haircut was timely, as Pastor Don, Jack, and Sandra, all from the church, stopped by to visit with Dad.

Mom left for the day around 5:00 P.M., thinking that Dad had had a pretty good day, all things considered.

At 11:30 P.M., Andrea, Dad’s night nurse, offered Dad the opportunity to administer his own oral care. Unfortunately, he was very confused and tried to use the mouth swab to suction himself. Andrea finally offered to assist him, and he sorta graciously accepted.

Dad and Andrea had another confrontation four hours later when he insisted that he had to get out of bed to use the bathroom. They argued about the bed pan and she left to retrieve Haldol to calm him. By the time that she returned, Dad had calmed down, so she didn’t administer the med.

September 25. I left Houston at 6:10 A.M. and arrived at my parents’ house in Temple at 10:30 A.M. Shortly after I arrived, GoodWill arrived and picked up my parents’ king size bed.

Mom and I arrived at the CCH at 12:45 P.M. Dad was still in dialysis, which allowed Mom and me a few minutes to visit with Dr. Smith. He told us that Dad would not need the dialysis lines when he went home. He didn’t know if the hospice care nurses would need the central line to administer morphine or other drugs, and asked me to contact them. I texted Sheila at Interim, and she said that they wouldn’t need the central line. Dr. Smith said that he would write orders to have the dialysis catheter and PICC lines removed before we took him home.

Dad returned from dialysis around 1:15 P.M. While he and I were talking, he mentioned how much he hated dialysis. When I told him that he would need to endure it just one more time, he said, “No! Without dialysis, you’re dead.” Something about the intensity of his response made me get up and look for Dr. Smith, and I found him in the hall outside of the administration offices. I told him that Dad just didn’t seem like someone who was dying, not that I possessed any real insight. I didn’t really have any goals and I didn’t know where I was going with this comment, but Dr. Smith and I discussed Dad’s state of mind, and he agreed that Dad seemed pretty lucid and that we shouldn’t withdraw care. He went on to say that the fungus had not been noticeable in Dad’s lab results for the last three tests. He thought that we might have to deal with a fungus at some time down the road, but that he would tell Marty to change Dad’s discharge plan from Hospice Care to Home Care if that’s what we wanted. I wasn’t familiar with Home Care and its implications, but it sounded a darn sight better than Hospice Care, and I quickly agreed.

blog01I practically ran back to Dad’s room to tell Mom the good news. Marty stopped by a few minutes later at 2:00 P.M. and asked if we wanted to review some brochures for Home Care providers. We knew that Adan worked for Scott & White Home Care and worked with the physical and occupational therapists that would care for Dad. Ironically, our decision to go with Scott & White Home Care was practically instantaneous. I had been critical of Marty over the past month, but she really earned her pay today. She quickly shifted gears and told us about all of the equipment that we would need and everything that we’d have to do, but we told her that we had made up our mind to take Dad home. She explained that she would do everything possible for a Tuesday discharge, but we were at the mercy of American Home Patient and their providers to deliver everything we needed.

When Mom and I had interviewed Shiela at Interim, we were touched at how willing she was to accommodate us. She had planned to move that weekend and changed her plans. I now needed to contact her to give her the good news that we would not need her services. She was very gracious and was thrilled for us.

At 3:15 P.M., Dana showed me how to administer Dad’s meds in the PEG tube. She reiterated that I would need to spend the weekend learning how to administer meds and how to handle all of Dad’s trach care. I assured her that I would arrive early tomorrow to begin my training in earnest.

Mom and I were asked to leave Dad’s room for a few minutes, so we walked to the CCH lobby and helped ourselves to a cup of coffee. I didn’t usually drink caffeinated coffee after noon, and Mom didn’t drink caffeinated coffee at all, but we didn’t care. We were practically walking on air and felt like celebrating with a cup of nasty coffee.

When we returned to Dad’s room, I saw Jennifer, the physical therapy assistant, outside of the room next to Dad’s, and introduced myself to her. In the 36 days that Dad had been at the CCH, I had not met her. I told her that I had heard great things about her and that I was glad that I had finally had the opportunity to meet her. She was very pleased and gave me a hug.

Mom_ERDad was a little tired after dialysis and didn’t feel up to much physical therapy. He didn’t get out of bed but did agree to some exercises in bed. Shortly after Jennifer left Dad’s room, Mom started feeling very lightheaded and faint. I got her a glass of water and I had Dana, the nurse, check her pulse. It was 82, which was fine, but Mom’s lightheadedness didn’t go away. While I watched this unbelievable mini-drama play out, I noticed Dad’s razor sharp focus on Mom that never wavered. I felt like an intruder on an intimate moment. I then asked Dana to take Mom’s blood pressure. Her blood pressure was very high, and the nurses strongly suggested that I take her to the emergency room at Memorial. I couldn’t believe it, and myriad emotions washed over me. Just minutes earlier we had been so elated about Dad, and now I was very worried about my mother. What was it with my parents and their dueling maladies? The nurse fetched a wheelchair while I pulled the car to the front entrance and we drove five miles to Memorial.

We arrived at the hospital at 4:15 P.M. and didn’t have to wait long before they triaged Mom. We were ushered into an examination room about 30 minutes later, and time seemed to stop. After the nurse repeated the same questions that we were asked 30 minutes earlier, she hooked up Mom to the monitors and we waited for the resident, who asked many of the same questions that we had now answered twice. A while later, we met Dr. Jones, who ordered some blood work, and then we waited an hour for the lab results.

There must have been a shift change, because a little over an hour later, a different resident entered the room and proceeded to tell us what was wrong with Mom. Evidently, Mom was dehydrated and needed an IV, which they would administer after they admitted her. Mom’s blood pressure had dropped and stabilized during the two hours that we had cooled our heels in the ER, but that announcement made her blood boil. Mom had big plans for the next couple of days and had no intention of being admitted. At Mom’s refusal to be admitted, I asked the resident if Mom could receive the IV in the ER and then go home. The resident agreed to that plan, and it seemed like my plan was a go until Mom learned that it would take more than an hour to administer the IV. It was 8:00 P.M. and we had now been here for more than four hours. Still searching for a solution, I asked if we could stop by HEB, the local grocery store, on the way home and pick up some Gatorade instead. The resident thought for a moment and said that this might be a viable solution, but she wanted to check first with Dr. Jones.

When the resident and the doctor returned a few minutes later, they explained that the original diagnosis had been incorrect. Instead of being dehydrated, Mom had the opposite problem and needed to restrict fluids. I’m not sure what they had in mind, but the two of them were pretty insistent that they must admit Mom for observation. Mom would have none of it and insisted that she was leaving. Frankly, we weren’t feeling too confident that these guys knew what they were doing. Had we not balked about the treatment, would they have administered the IV? The two doctors finally realized that they had more than met their match, and Mom signed an Against Medical Advice (AMA) waiver, stating that she was declining the recommended medical treatment. We waited for our paperwork and finally left the ER shortly after 9:00 P.M. In hindsight, a caffeinated cup of coffee on top of the shocking turn of events was probably a bad idea.

We drove home as fast as we could and celebrated the events of the day with a dinner of leftover Sloppy Joes. Mom poured herself a scotch and I poured myself a glass of wine—as far as we were concerned, this was just what the doctor ordered.

As we looked back on the day, we wondered when the heck the doctors were going to tell us that Dad didn’t have the Candidiasis fungus. We had spoken with Dr. Ciceri several times a day for several days and he looked us in the eye and told us that Dad had this fungus and never wavered in his prognosis that Dad would die in one-to-two months, even with care. And to top it off, we told this guy that he was one of the two doctors that we trusted. Because Drs. Smith and Ciceri were partners, I had assumed that Dr. Smith knew about Dr. Ciceri’s dire predictions, but now we weren’t so sure. We also wondered if Dr. Smith thought that we knew about Dad’s negative test results. The events of the day had unfolded so rapidly that we hadn’t had the opportunity to process everything we heard, let alone ask questions.

The list of doctors that we trusted with my father’s life was now down to one: Dr. Smith.

I don’t know what prompted me to approach Dr. Smith about Dad, but I do know that God works in mysterious ways. Thank God.

I just wished that God could make Dad stay in bed.

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.