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.
When 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.
At 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.
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