In September 2006, mother’s condition seemed to start deteriorating rapidly. Her pain was severe at times. The ribs she broke during her fall just happened to be on her right side, which was the side she was experiencing pain from her bile duct/liver cancer. Her morphine dose was increased which made her sleep a lot more. Her mental status seemed to be declining rapidly also. She was losing the ability to think and reason. She refused to use any home medical supplies that would have made my sisters and my job easier. One day we couldn’t get her off the commode. She was getting weaker and weaker to the point that she just couldn’t help push herself up. Hospice suggested a commode seat riser with rails. They brought it and we installed it. That night, my sister awoke to hear a loud thud. Mother had gotten up to go to the bathroom and somehow managed to pull that commode seat riser off the commode and flung it out in the hall. I’m still trying to figure out how she mustered up the strength to do that. She made it clear she wanted no part of that thing just as she wanted no part of the hospital bed. She also balked at using the bedside commode and the shower seat. I think in her mind, home medical equipment meant that she was becoming helpless and dependent- the two things she was desperately trying to fight.
One day, the aide came to bathe her and as was now always the case, my mother refused her bath. She really needed to be cleaned up (it had been days since she had allowed anyone to bathe her) and the aide was trying to talk her into getting out of the recliner chair and into the hospital bed so that she could at least give her a sponge bath. Mother became angry, screamed “OKAY” and started cursing, and crying. The aide told her to go ahead and cry, scream all she wanted, and let it all out. She did. I walked out of the room crying myself, leaving my mother sitting on the edge of the hospital bed and crying in the aide’s arms. Mother agreed to a sponge bath and afterwards went to sleep. Her tantrum had depleted her of what little energy she had. Her breathing was very irregular that night and she had what I was sure was a death rattle. I remember that sound well as my father had it the last few days of his life. It’s a sound I can guarantee you I will never forget. I prepared myself for my mother’s death that night. I called my husband and told him it was time to take our sons to get fitted for suits. I was sure we would be attending her funeral soon. My sister slept by her side on a loveseat that night and I slept back in the bedroom. I checked on her frequently throughout the night. The next morning, her breathing was better. The next night was the same. Her breathing became very rattled and irregular again, and at times would stop (Cheyne-Stokes respiration). Again, I thought this was the end. I didn’t sleep well that night because I kept getting up to check on her. I could hear her breathing from back in the bedroom. The next morning I awoke just before dawn to go to the bathroom and decided I would peek in on her. It had only been about an hour since I had last checked on her. I no longer heard her rattled breathing and prepared myself to find her dead in her bed. I found her awake and in a state of sheer terror. She had scooted down to the end of the hospital bed and was trying to climb over the end of the bed. When she saw me, she screamed, “Dear God, where have you been, I have been calling you for 3 days!” I assured her she had NOT been left alone that long. She grabbed my arm, looked me in the eyes, and said, “I died didn’t I?” She was terrified. I don’t think I have ever seen fear in another human’s eyes like I did in her eyes that morning. I assured her she hadn’t died, that she was very much alive. She asked me over and over if she had died. I explained that the fact that we were having a conversation meant that she was very much alive. She kept saying she knew that, but that she had died. I was as scared and confused as she was. She asked me where she was and I explained to her that she was in her living room. She looked around and said, “Then where are all my pictures?” It was as if she couldn’t see the same things I was seeing. I started picking pictures up and showing them to her. There was no convincing her that she was indeed in her own living room and that she hadn’t died. It was as if she had left her home and had a glimpse of some other place- like she was somewhere between life and death. I couldn’t seem to calm her down and so I told her I was going to go wake up my sister (who was sleeping on the couch in the den) and I turned to walk out of the room. As I did, she grabbed me with a death grip and screamed and pleaded with me not to leave her, that she had never been so scared in all her life. I started patting her arm and telling her I would not leave her. I hollered for my sister to come. When she walked in the room, my mother looked at my sister and asked what she was doing in her pajamas. We talked to mother and kept assuring her she was okay and that she was in her living room. She asked why there was a man standing over in the corner by the front door. We told her we didn’t know and we asked her if she wanted to get up and go sit in the den. She did. We got her in a wheel chair and moved her into the den and into her recliner chair.
The hospice social worker once explained to me that people often die in the same way they have lived their life. My father was a very gentle and quiet person, and he died in a quiet manner. She told me that those who lived their lives kicking and screaming would more than likely die kicking and screaming. This was sure turning out to be the case with my mother! Caring for my mother during her terminal illness became all-consuming. I rarely saw my family. My oldest son was a senior in high school and I felt I was missing out on an important part of his life that I would never have back. My sisters were stressed from trying to work full-time and care for a dying mother when they weren’t at work. We were emotionally depleted and physically exhausted, and we felt overwhelmed. We didn’t know how much longer we were going to be able to manage our mother’s care by ourselves.
We told Tom, the hospice nurse, about the episode we had been through that morning in the living room and how we couldn’t convince our mother that she hadn’t died and couldn’t get her to understand where she was. We told him how very frightened she had been (and how frightened we were). We were still having trouble getting her to take her medicines. In her confusion, she never believed we were dosing her right and she often mentioned that she thought we were trying to poison her. Bathing her was still very much a battle and she was wearing us out, both physically and mentally. She yelled at us for not loading her dishwasher correctly or not running the washing machine properly (the middle sister was banned from using the washing machine altogether). Despite our feelings of inadequacy, Tom commended my sisters and me for the good care we were giving our mother. He told us that in his experience, caring for a terminally ill patient usually tended to fall on the shoulders of one person, but that we all three had been working together, making out schedules and taking turns, and that he was proud of us. He told us though, that he felt some respite care was needed.
On September 11, 2006, my mother was admitted to the St. Thomas Hospital Alive Hospice inpatient unit. An ambulance came to pick her up. The doctor who evaluated her told us that her hepatic encephalopathy was severe and out of control, and that her ammonia levels were dangerously high. He said all the symptoms we had seen at home- the agitation, the anger, the confusion, the paranoia- were all due to hepatic encephalopathy. I told him how her breathing had been irregular and rattled the week before and he said he was sure it was due to her ammonia levels being dangerously high and that she probably had been very close to death. He hoped to get her medications better regulated, but he also told us he thought she was near the end. He explained that death from the liver/bile duct cancer would be from an hepatic coma- that she would just drift into a coma and die. But his main fear was that her head/neck cancer would take her before the hepatic encephalopathy would. And death from head/neck cancer was not a “good way” to die. My husband is a nurse and he had seen death from that type of cancer before. He explained to me that my mother would hemorrhage to death.
Over the next two weeks that she was in St. Thomas, we saw ups and downs. Her confusion became much worse. The tumor in her throat was growing and the lump under her ear was now the size of a golf ball. She was having trouble swallowing and they had to purée her food. On September 18, (a date I remember because it was my father’s birthday), I received a phone call in the wee hours of the morning. My heart pounded because I feared it was the hospital telling me my mother had died. I answered the phone, and to my surprise, heard my mother’s voice. She kept saying, “Gail, this is your Nana” (Nana is what all her grandchildren called her). She no longer knew me as her daughter, and thought I was her granddaughter. She told me she wanted me to come to the hospital and that she wanted me to bring her prayer-book and her bible. She also told me she was going to die that day. I believed her. I took the family, her bible and her prayer-book, and we went to the hospital.
One day she became so angry at the doctor, that she tried to hit him over the head with her hairbrush. That same day, I informed her our priest was coming to visit her, (she was actually our interim priest as our church was “between priests”). Mother liked the interim priest and the news that she was on the way cheered my mother up. Mother asked me for her make-up and hairbrush and started “fixing herself up.” The priest brought her fresh flowers and communion and this made my mother happy.
One of the worst things about being in St. Thomas was that she no longer had the same hospice team. She missed Tom, her home hospice nurse, whom she absolutely adored, and who understood her better than anyone. Thankfully, he came to visit her some which always cheered her up. We had put our mother on the waiting list to be admitted to the Alive Hospice residence in Nashville. After being told our mother was near death, imagine our surprise not two weeks later when they told us she might live several months more and they were going to discharge her from St. Thomas. The Social Worker on her case told us that our options were: 1) An assisted living facility (my sisters and I were dead against this option due to my mother’s mental status. The doctor agreed and said she was also at high risk for falling) 2) We could take her back home and care for her 3) we could put her in a nursing home until an opening became available in the hospice residence. A day or so later, the social worker informed us that mother’s name had mistakenly been removed from the hospice residence waiting list and we were now at the bottom of the list. I was very upset and angry at this “mistake.” It was going to be a long wait as we were told the residence had no actively dying patients. We would have to make a decision. The hospice doctor did not think she was a candidate for home care. She was much to difficult to manage. He said she was at high risk for both falling and for developing bed sores. We made the decision to place her in a nursing home until we could get her into the hospice residence, which we hoped would not be long.