For years my mother and my youngest sister, lived together in a small town in Texas, the town all of the children grew up in. Mother’s activity had been curtailed for about 23 years by a stroke that left her with a weak left leg and a useless left arm. Her thinking, comprehension and speaking had not been affected. She loved to tell stories about her growing up in a family of ten children and now being the last surviving child. She still had a twinkle in her eyes and the delightful sense of humor that endeared her to her four grandchildren. However, in her 92nd year the joy of living began to fade quickly. She was confronted with rapidly deteriorating hearing, sight and the most precious of her senses, her memory. Her appetite was waning and several times in recent months she had stated to her daughter that life just wasn’t worth living any more. She had watched two of her sisters die a drawn-out death in a nursing home with dementia and feeding tubes through the abdominal wall and she was adamant that she did not want that.
On Feb 22, 2005, she was admitted to the local hospital with fever and weakness. The diagnoses were urinary tract infection, low blood potassium and dehydration and treated with a catheter in the bladder, IV antibiotics, potassium and fluids. She was not interested in eating or drinking. My sister spent the first night with her. She was moaning and groaning most of the night. Despite coaxing, she took no food or liquids by mouth.
My wife and I arrived the following day. I had retired five years earlier from the practice of medicine as a general internist and knew all too well the difficult problems that surface at the end of life in a hospital setting. My sistser and I met with mother’s hospital physician and told him that we wanted to take Mother home and focus on comfort care only. He said that there were three options for feeding her: nasogastric tube, percutaneous gastric tube inserted through the abdominal wall or withdrawing food and water and making her comfortable. We chose the last option. He referred us to home hospice care and said that they would arrange for a hospital bed to be delivered to the house. Mother was getting pain medication for back pain and she was showing no sighs of discomfort. She slept most of the time but would awaken for short periods and talk. I stayed the second night with her. At 2 am both of us were sleeping when I was awakened by a nurse’s aide who came noisily into the room and woke Mother up. I looked at my watch and asked why she was coming in at that hour. She said that it was time for Mother’s bath. When I asked why a bath had to happen at 2 am., she said, “This is our slack time.” Mother looked very sternly at her and said, “You can get out of here!” The aide insisted and tried to placate Mother while she was giving the sponge bath. After the aide finished and left, Mother said, “I just want to die. Can’t you just let me die?” A few minutes later she whispered, “Winston”. I leaned over the bed and said, “Yes, Mother?” She said very softly but emphatically “Just do me in!” After a few seconds to absorb such a profound statement, I told her that no, I could not do that but I promised her that when morning came we would take her home to her bed.
The next morning, At 11 a.m. on the third hospital day, the IVs were stopped, the urinary catheter was left in and 5 mg of Valium was given in preparation for taking her home. At home we put her to bed in her bedroom and set up a cassette player with her favorite Perry Como music. I called her personal physician and requested Fentanyl skin patches (a morphine derivative) and Valium to be injected intramuscularly as needed for restlessness. He was very supportive of what we were doing and called in the prescriptions to the pharmacy. She slept the rest of the day but was restless during the night. My sister slept in the bedroom also so she could be available should mother need attention during the night. The next morning I went to the pharmacy and picked up the two drugs. The hospital bed arrived in the early afternoon a wonderful nurse from the local outpatient hospice program came to the house. I explained that we were stopping all food and liquids and using the two drugs to keep her pain free and mildly sedated. She agreed with our plan and was most helpful in showing us how to turn her for washing and for avoiding pressure point pain. She showed us how to care for the urinary catheter. She said that one of the hospice nurses would visit daily and we could call anytime day or night for help or questions.
There was two couches and chairs in the bedroom to accommodate the family members, neighbors and friends that came to visit with Mother. The next door neighbor was there when our daughter arrived from Austin. Mother was lying quietly with her eyes closed when my sister leaned over the bed and whispered, “Your granddaughter is here”. Without opening her eyes, she said, “I want to see her.” My sister replied, “Why don’t you open your eyes and look at her? She looks so pretty!” Mother opened her eyes and exclaimed, “You are pretty!” using the nickname she had given her when she was a little girl. Then mother turned to my sister and said, “She must look like me. I’ve always been told that I was pretty. I’ve always had pretty hair. When I was little I had long, golden curls.” Mother said, “Mother you are one of a kind!” To which mother replied, “Good or bad?” We all laughed. My daughter gave her a long hug and talked to her for a few minutes before mother dozed off again.
While appearing to be dozing she would often call for “Mama” and say “Help me, Mama” from time to time. She would ask for a drink of water but refused to take it by pursing her lips tightly. She didn’t ask for food. The first patch of Fentanyl was applied when she appeared to be having pain. To prevent the restlessness at night a dose of Valium was given in the evening and she slept the entire night with no distress.
The next day another of the hospice nurses, came by and was very helpful. Mother rested well with the aid of two doses of Valium until the next morning. On the fifth day at home our oldest son arrived from Baja, Mexico where he was working. He was able to stay three more days and to enjoy the few times where she was awake enough to converse for a few minutes.
People were coming and going from Mother’s bedroom and cherishing the brief last moments of her life. A hospice nurse came every day to see how Mother and the rest of us were doing. The hospice nurses were of immense help in making sure that we were helping our mother, grandmother and friend make her departure from this life with dignity, love and comfort.
The last four days she was unresponsive. On the 11th day at home she died. It was a good death.