In February of 2006, my sisters and I were dealing with a very sick mother who had cholangiocarcinoma (bile duct cancer), neuroendocrine cancer of the neck (throat), and lung cancer (which was a metastatic cancer from her throat cancer). We were told treatments would not be beneficial. Since her diagnosis in April of 2005, I had taken her several times to a liver specialist at Vanderbilt and a pet scan had shown that her bile duct cancer had spread in her liver, the existing tumors were larger, and it had also spread to a periportal lymph node. All bad news. The doctor’s words to me were, “We do nothing.”
Over the next several months, I saw my mother sort of withdraw from the world…. something I was assured was “normal” in a dying cancer patient. Depression became her constant companion. She thought and talked a lot about death and dying. The oncologist she was seeing, had a clinical psychologist there in his office, and my mother was encouraged to make an appointment with her. The oncologist believed there were “cancer related issues” that needed to be discussed. My mother VERY RELUCTANTLY made the appointment. Mother never liked the idea of psychotherapists and “talk therapy.” She grew up in a generation that tended to believe that it was somehow shameful to admit that one needed “therapy” or that it indicated some sort of character weakness (a topic we always had strong disagreements about). She always said going to a mental health professional was like “airing dirty laundry” and she wanted no part of it. On the day of her appointment, the psychologist came out in the waiting room and introduced herself to me and told me she was here for the whole family, to help us through our “cancer ordeal.” During her session with my mother, they talked mainly about grief and the stages of grief. They also talked about hospice care. At the end of her session with my mother, she once again came out to the waiting room and told me that mother seemed to be in the acceptance phase of her grief, and that she seemed to be handling things well. I couldn’t help but wonder what kind of front my mother had put up for her. The psychologist also warned me that it was very normal for a cancer patient to bounce around from one stage of grief to another. One day she may be in acceptance, the next day, she might be in the anger stage, and the next she might be in total denial. I found this to be EXACTLY how it played out in my mother’s case.
My mother was becoming weaker. I took her to the grocery store in early March. This would be her last trip to the grocery store. Just pushing the cart wore her out and she was out of breath. I remember wheeling her groceries out to the car and unlocking the front passenger door so she could get in the car. I loaded her groceries into my trunk and got in the car. My mother suddenly broke down and cried. I asked her what was wrong. She told me that she was tired, she had cancer, and that she was dying. Her answer made me feel bad for even asking the question. Through her sobs, she asked me if I would take her shopping the following week to buy a dress for her funeral. This totally caught me off guard and I didn’t know how to respond. Then our eyes met, and I knew what I needed to say. Sadly, I told her that I would. I would take her shopping to buy her burial dress.
My mother’s 80th birthday was April 13, and it was rapidly approaching. My sisters and I wanted to do something really special for her. Mother had been a hostess at the Grand Ole Opry for 27 years and had recently had to quit due to her health, which was very difficult for her. She missed her friends. So we planned an 80th birthday bash for her that was held at our church. On the invitations, we asked for no gifts, but asked that everyone please write a memory they had of our mother and bring that. My sisters and I prepared all the food and punch and ordered a big birthday cake. One of my nephews made a CD of a lot of her old favorite songs that we played at the party. We had a table where we displayed pictures from my mother’s life. My mother really looked forward to this day and I think involving her in the planning of it helped to take her mind off of her cancer. The shopping trip for the burial dress, ended up turning into a shopping trip for a dress to wear to her birthday party. Thankfully, the party fell on one of her “good days.” She enjoyed seeing old friends and neighbors and she kept her stack of cards and memories people had written about her by her chair and she looked at them often.
Mother mentioned several times to my sisters and me that she felt that she was “losing her mind” and that something wasn’t right with her brain. My mother was extremely bright with a high IQ. She watched Jeopardy for years and years and could always rattle off the answers but she noticed that she no longer knew any answers which was very frightening for her. She quit watching Jeopardy. The crossword puzzles that she enjoyed working daily in our local paper for so many years, she could no longer do. For years, my mother and I both enjoyed working those darn puzzles, although the difference in us is that she worked hers in ink pen and I did mine in pencil. My mother used to remind me that the true definition of the word “optimist” is someone who will work a crossword puzzle in ink. I could rarely complete one. My mother and I would call each other frequently to compare answers (usually me calling her to get help with a clue). I started noticing more and more that my mother was calling ME for help. This was really a wakeup call to me that something really was wrong with her brain. The day came when she just stopped doing the crossword puzzles all together. That was a sad day. She also commented to me on several occasions, usually when signing a birthday card for one of the grandchildren, that her handwriting was becoming smaller and smaller. She was right. My mother always had beautiful cursive handwriting and it indeed was becoming smaller. This was frustrating to her, because as hard as she tried, she just couldn’t seem to make her letters “bigger.” I remember thinking all of this was very odd. She brought it up at doctor visits but they never seemed to attach much significance to it. Later, when I did some research of my own, I learned that this condition, known as micrographia, is commonly seen in people with Parkinson’s disease, but could also be seen in patients with liver disease.
There were other little things we noticed. Mother was still living on her own at this point, although one or all three of us stopped by to check on her every day. I started noticing my mother seemed more anxious than normal and a little agitated at times. Things like a burned out light bulb would worry her to no end. I remember one particular evening, she called to tell me that one bulb in her 3 bulb fixture had burned out in the bathroom. I told her I would come over the next day and put a new one in for her. She quickly replied in a very serious and agitated tone of voice that “she guessed she could just get the neighbor to come and replace the bulb.” I could hear the worry in her voice. I realized she wanted that bulb replaced right then and not a second later. I was baffled and didn’t understand this bizarre behavior. This was NOT like my mother. I didn’t realize it, but we were starting to see the first signs of hepatic encephalopathy.
Hepatic encephalopathy is a brain disorder caused by a diseased liver. It occurs when the liver is damaged (in this case by tumors) and cannot remove toxic chemicals, such as ammonia, from the blood. These chemicals enter the brain and cause it not to function properly. Changes in thinking and personality are common as well as forgetfulness, and irritability. As it progresses, it is common to see agitation, inappropriate behavior, severe personality changes and drowsiness. At first her signs were mild, but later became more severe. We noticed more confusion and forgetfulness. One day she forgot the code to her alarm system that she had punched every day for years. We were told that in the end, she would more than likely slip into an hepatic coma and die.
My mother requested the services of Alive Hospice in late March of 2006. Her oncologist obliged and made the referral. She was on a gradual decline, but still had some very good days. Our plan as a family was to keep her in her home for as long as possible. My mother had always said that she had heard many good things about the Alive Hospice residence downtown and that she wouldn’t mind spending her last days there if it was necessary. But for now, we wanted to let her stay in her home, where she was comfortable, for as long as she possibly could. We were pretty familiar with Alive Hospice and their services, as we had them with my father when he was in the terminal stages of colon cancer. They were a tremendous help and support. I was there the day they came to her house for the first visit. If you didn’t know my mother, you would not even know she was sick. They were shocked to be greeted at the door by my mother, the supposedly dying patient. I’m sure they wondered if they had perhaps gone to the wrong house or something. The doctor came later and we all sat in the living room and talked. My mother was her usual witty self and the doctor himself was shocked to see my mother so vibrant and “healthy” in appearance. My mother took an instant liking to Tom, her nurse. Tom was good with my mother and she got very attached to him. Above all, she learned to trust him and confided in him about her fear of dying. She also liked the aide who came to bathe her twice a week. They always shared a lot of laughs together. I was relieved to have the support of Alive Hospice, but little did I know, our journey through “cancer hell” was only beginning.