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.
We 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.
Before 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.
3 thoughts on “Preparing for the other H word: Hospice”
It is true miracles do happen. As a nurse, myself, discharging a patient home under hospice care means death is inevitable. Thank god you followed your instinct otherwise, the doctor would have stopped treatment. This just shows that it is vital that health care professionals listen to the patient and their family, family-centered care.
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