It wasn’t long after we got Alive Hospice in place for my mother, that the pain of bile duct cancer reared its ugly head. My mother complained of a severe pain up under her right rib cage that would radiate around to her back. Morphine was started immediately. In July of 2006, it became clear that she could no longer stay by herself. She was experiencing more and more periods of confusion and the weakness and fatigue that cancer often brings was becoming very evident. She was starting to show some confusion over her medication dosing and on one particular day double dosed herself. My sisters and I decided we would take turns staying with her around the clock and caring for her in the comfort of her own home. This was going to be complicated since both my sisters had full-time jobs and we all had families and children. The middle sister had grown children, but was also the primary caregiver for her invalid mother-in-law, whom her family had recently moved into their home. My oldest sister and I both had teenaged children. Caring for a dying person is hard work. My sisters and I made out a schedule each week. I usually took most of the weekday shifts while my sisters worked, and we took turns on nights and weekends. While there, we prepared mother’s meals, cleaned her house, did her laundry, and made sure she took her medicine properly. We also took turns doing the grocery shopping and coordinated visits with the hospice “team” and other visitors- the nurse, the social worker, chaplain, aide, our priest, and friends who came to visit.
I think the hardest part of my mother’s care was dealing with her rapid cognitive decline. I had helped to care for my father years before, as he lay dying of colon cancer, and I knew fully well what cancer could do to a body. So with mother’s multiple cancers, I was fully prepared for her physical decline, but was in no way prepared for how fast her mental status declined. Mother began having hallucinations. One particular night that stands out in my memory was when I was spending the night and my mother arose out of her chair and proceeded to walk through the den and into the kitchen. I didn’t think anything of it. I thought perhaps she was getting up to get something in the kitchen or that she was going to the bathroom. A few minutes later, she came back into the den and stood there looking all over the room, as if she had lost something. I asked her what she was looking for and she replied, “I’m looking for that kitty cat.” My mother had not owned a cat in over thirty years. She walked back in the kitchen and then into the dining room and started circling the dining room table, calling for the “phantom cat.” I remember being very scared by this bizarre behavior. It was the first of many hallucinations my mother would experience. One morning I awoke to find her standing at the back door staring out into the backyard, her eyes darting around rapidly. She just kept standing there looking. When I asked her what she was looking at, she replied, “Just look at all those badgers out in the back yard.” She spoke with much wonder in her voice. I thought…. badgers? I went and looked out the door and saw nothing but a couple of squirrels. I thought she had just mistakenly called them badgers, so I said, “Mother, you mean squirrels?” She replied, “No, just look at all those hundreds of badgers,” as she stretched her arms out wide. I was starting to get freaked out. I had no experience dealing with anyone having hallucinations and I did exactly what I wasn’t supposed to do. I argued with her and tried hard to convince her that the things she was seeing weren’t real. I told her there were no badgers and told her to come sit down. I later received instructions on how to deal with my mother when she had these hallucinations- to talk the truth to her but NOT to try to persuade her that what she was seeing didn’t really exist. There were times she would see dogs walking around the house (and she could describe them to a tee-what color they were, how big they were and even if they had a collar on and what color the collar was). Her hallucinations became frequent and sometimes they frightened even her. One night she awoke to see a man laying on the back of the couch beside the recliner chair that she slept in. She told me that she finally realized he was a hallucination and wasn’t real because she figured a grown man wouldn’t be laying on the back of a couch. Another time she saw a dog walking on the ceiling. I was in the den with her at the time and we had been watching TV. I noticed that she kept looking at the ceiling and her eyes were moving as if she was following something around. I watched her a minute, my eyes periodically moving to the ceiling to see if I could see anything. I asked her what she was looking at. At first she wouldn’t say, but then she looked at me and smiled. She told me that there was a dog walking around on the ceiling, but it had to also be a hallucination, because how in the world could a dog walk on a ceiling? We were told that these hallucinations were absolutely real to my mother. One morning I woke up and she told me that my father had come to visit her while she was sleeping. She said they curled up in the recliner chair together and slept. She was convinced this had really happened (I wasn’t so sure it DIDN’T happen) and was telling me how crowded it was in the one recliner chair with the both of them trying to sleep. One morning I awoke early because I heard her rumbling around in the hall closet. I got up to find her in the hall putting a coat on. I asked her what she was doing and she said she was going out to get the parakeet off of the front porch. She told me she had put the parakeet’s cage on the porch and that it had been a big mistake because it was now snowing, and she needed to get the bird in before it froze to death. There was no parakeet. There hadn’t been a parakeet in the house since I was a little girl. I could see the sense of urgency in her face. I assured her everything was o.k. Then she looked at me and said, “There’s no bird on the front porch is there?” I told her we would look and see. She looked very confused and then told me it had been a dream, but it seemed so real. I showed her the porch just to reassure her there was no parakeet out there. She took off her coat, hung it up and all was fine. We never knew what was causing these hallucinations. We were told it could be related to her medications, or it could be related to the cancer. Looking back, I often wonder if she also had brain metastases. No diagnostics were ever performed…. After all, what could be done if she did also have a brain tumor or tumors? Nothing. Her body was already ravaged with cancer. So we never knew.
I don’t know whether it was her weakness or the hepatic encephalopathy, or both, but my mother started falling. It was very difficult to get her up off the floor when she fell because she was so weak and couldn’t pull herself up. She was dead weight. On the days she was more confused, her walking was very unsteady. But on her more lucid days, she could walk just as normally as ever. On Labor Day, when my oldest sister was helping her to the bathroom, she fell in the bathroom and landed on the porcelain tub and broke some ribs. Her pain management at that point became very difficult to control and it started taking two of us to stay with her instead of one. The hepatic encephalopathy was making her belligerent and paranoid. She didn’t want to take her medicines because she thought there was a conspiracy to kill her and that we, her daughters, were trying to poison her. She wouldn’t let us bathe her and she even started getting angry when the hospice aide would come to bathe her. The hospice aide explained to me that hospice would not force anything on a patient and as long as my mother could verbally express that she did not want a bath, then they would not force a bath on her. This bothered me (a lot) because I didn’t like it that we couldn’t keep my mother clean. It made me feel that I was an ineffective caregiver and made me feel that I wasn’t taking good care of my mother. I remember one day feeling a little embarrassed, because I had to warn and apologize to our priest who had come to visit, that my mother had body odor because she would not let anyone bathe her. Sometimes she would spill food or drink on herself, but when my sisters and I suggested a clean gown, she forcibly resisted. She couldn’t control her bladder any longer and was in diapers at this point. She often wouldn’t let us change her diapers and when she would, it was an ordeal, taking two of us- one to help her stand and steady her, and the other working to get the old diaper off, then get her cleaned up and a new diaper on, with her screaming and ranting the entire time. I can’t even begin to tell you how stressful this was on my sisters and me. We dealt with diaper rash and yeast infections. We couldn’t get our mother to understand the importance of staying clean…. at the first mention of a bath, she became belligerent and argumentative. I hated these times.
Up until now, my mother was spending most of her time in a recliner chair. Trying to care for someone in a recliner chair was next to impossible. Something had to change. Her already psoriatic skin was becoming severely compromised from lack of bathing. No amount of talking convinced her…. she was losing her ability to reason. My sisters and I requested a hospital bed, which my mother made clear she wanted no part of. Hospice got us set up with one and we put it in the living room. This infuriated my mother. Mother started telling us when she was going to die. She would name the exact day AND even the time she would die. The first night she was to sleep in the hospital bed, my sister and I got her “tucked in” and said goodnight. It had been a difficult day with her, and my sister and I were exhausted. I was reaching to turn out the lamp when my mother screamed at me not to turn the light off. She then calmly told my sister and me that she was going to die at 9:00 that night and to leave the light on until then, that I could turn it out AFTER she died. We had been told and had read that terminal patients often seem to know when they are going to die, and so we paid serious attention to her predictions. At night, my sister and I used to like to retreat to the back porch after getting mother to bed. The stress of caregiving was beginning to take its toll on us and evenings on the back porch were times we could just relax and vent to each other. We used to joke and call these times on the back porch our “Xanax parties.” My sister and I playfully argued that particular night on the porch who was going to go in and check on her at 9 pm. I think we ended up going together, and she was very much alive at 9 pm that night. This was the first of many times that my mother told us the exact day and time that she would die. I asked one of the hospice doctors once why she was doing this and he explained to me that she was desperately trying to be in control of something…. anything. She hated the helplessness she felt at this loss of control and becoming dependent on others, and she was afraid… afraid from not knowing what her death was going to be like.