Anita was diagnosed with non-small cell lung cancer in late February of 2003, and died May 9, 2003. The diagnosis occurred after Anita had been admitted to the hospital on February 21st with pneumonia. We were to find out the pneumonia was obstructive, and caused from two tumors, one in the right lower lobe and the other in the right upper lobe. After consulting with an oncologist during the hospitalization, we found out there was not much that could be offered for treatment. As the oncologist told us, due to the presence of two tumors in two different lobes, radiation was not a possibility. From a needle biopsy of one of the tumors, the cell type was identified as adenosquamous. Any chemotherapy would have been very rigorous, and at the age of 88, would have been very hard on Anita. Surgery was also not an option, as Anita had very poor lung function from Chronic Obstructive Pulmonary Disease (COPD). The only treatment Anita was offered was an experimental drug, Iressa. As explained by the oncologist, this was not considered chemotherapy, or a drug that would cure lung cancer. In laboratory studies, Iressa was capable of slowing the growth of cancer in 10% of the studies. If used, Anita may have had her life extended by 6 months. One of the side effects of this drug, affecting 40% of the study population, was severe diarrhea. Anita already had lots of problems with diarrhea due to colitis. The oncologist told us if we did nothing, Anita had two to three months life expectancy.
I should also mention Anita had been diagnosed with Alzheimer’s and senile dementia about four years ago. In January of 1988, Anita and her husband moved to a nursing home. Neither was in good health. Lloyd, her husband, died in February of 1988. At that time I became her guardian and had durable power of attorney. Anita and my husband were never close, really did not have any type of relationship at all. My husband was an only child, and by default, I became responsible for Anita.
The decision to trial the Iressa was left up to me. I spent several hours talking with the oncology office nurse and really agonized about whether or not to have Anita try this drug. I really had no one to help in making this decision. My husband had died in 2000. Knowing that only 10% of the trial population was anticipated to have any results, the severity of side effects, and the fact it might lengthen her life by six months, did not seem worth it if it created six months of severe diarrhea. If this side effect did occur, I was told Anita would immediately be removed from the study.
While in the hospital, Anita forgot from day to day that she had been diagnosed with lung cancer. As far as she knew, she was ill, but really did not know why. Also during the hospitalization, her sputum was cultured. Unfortunately, the sputum was positive for Methicillin Resistant Staphylococcus Aureus (MRSA). That necessitated strict isolation.
Since the decision had been made to have no treatment, I contacted hospice while Anita was still in the hospital. I knew Anita would be moved back to the nursing home soon, and I wanted their support from the very start of this process.
The nursing home regulations stated Anita had to have three negative sputum cultures before she could return to her room on the assisted living unit. The four weeks of isolation at the nursing home was extremely difficult on Anita. She felt she was in jail, and did not really understand why. Since she had been on strong antibiotics in the hospital, the pneumonia had been successfully treated. Since she did not feel ill, she could not understand the need for isolation. Again, most of the time she either did not remember the cancer, or was in such denial she would not admit to having cancer. I believe it was more that she did not remember.
For the past several years, we had known the nursing home would be closing. It was a tremendous structure built in 1904. Medicare codes could not be followed due to room size, etc. To renovate the existing structure, it was estimated to cost $20 million for remodeling. This nursing home also owned a much newer facility, and the board of directors elected to build another large wing onto the newer facility to house the residents of the older facility. The move to the new facility was to take place in April of 2003, but due to construction delays, we were not sure when the move would take place. The older building had been sold and the new owners were to take possession on May 1. So the push was on for the new facility to be completed.
By the end of March, Anita was out of isolation on the health care unit and moved back to her room on assisted living. She was so thrilled. Because she did not understand her steady decrease in strength, she was determined to begin physical therapy to regain her strength. You could tell her this was not going to help, and for about five minutes she would acknowledge she had cancer and was dying. Then she was back to wanting physical therapy. By the time she returned to her assisted living room, she needed a wheel chair to get to the dining room. She had been using a walker for several years, and she was beginning to struggle in getting around in her room. She was also dependent on oxygen full time, and had been since her hospitalization.
By this time, there were only about 35 residents remaining at the older facility. Several times we were told the move would occur in several days. I would get everything packed, only to find out there was another delay. This was hard on Anita. As April progressed, so did the lung cancer. Anita never complained of pain of any kind. She knew she needed to have oxygen, but was not sure why. I felt her Alzheimer’s was advancing and talked with her hospice nurse about this. She explained some illnesses, especially cancer, really seemed to accelerate the progression of Alzheimer’s as well as dementia. Anita was becoming very child like in many ways. She was also having more problems with her balance as well as her strength. She had several falls in her room, which never resulted in any serious injury.
May 1st, Anita was moved to the new facility. She was in the first group of eight residents to be moved. This was a Thursday, and on Friday, eight more residents were moved. To say this was a very chaotic time is stating it mildly. The staff was split between the two facilities, which made for many long hours and days for them. The following Monday and Tuesday, the remaining residents were moved.
The first weekend Anita was at the new facility, she complained constantly of being cold. Her appetite was very poor and I could tell it had been very difficult on her both physically and emotionally to make the move. The first of the following week, when the other residents were being moved, I spent as much time as possible with Anita. The staff was spread very thin and I felt Anita needed more attention. That is not a criticism, just the reality of the situation. By Monday, I had a feeling Anita was going to deteriorate and asked her hospice nurse to see her on Tuesday. I was able to get off work long enough to be there during the visit. The hospice nurse agreed Anita was getting weaker and the poor appetite was of concern, but also thought her lungs sounded clear. When I went back to the nursing home that evening, I noticed a big change in Anita. She was feverish and you could really hear a rattle in her chest. She had not eaten lunch or dinner, in fact, had refused to go to the dining room, as she did not feel well enough to leave her room. Wednesday, the following morning, I talked with the hospice nurse and asked her meet me at the nursing home in the afternoon. By that time, Anita definitely had a distinct rattle and cough. Anita was still responsive, and kept telling us she really felt bad. The hospice nurse ordered some antibiotics that would be started the following day.
I do not know what made me decide to go to the nursing home before going to work on Thursday. I had been back to the nursing home Wednesday evening and thought Anita was loosing ground. It took two of us to get her out of bed and to the bathroom and at that time I had requested a commode put at her bedside. I got to the nursing home about 6 on Thursday morning and was pretty stunned with Anita’s condition. She was very hot to the touch and had been incontinent of urine during the night. I had one of the night staff help me get her cleaned up and the bed changed. While we were doing this, the hospice nurse arrived. This surprised me, as I would not have expected her to be there at that hour. She told me she had also had an uneasy feeling about Anita and wanted to check on her before work. Anita was responsive but not quite coherent. I requested a catheter be inserted, as I did not think Anita would be getting out of bed again. By 11 that morning, she was non-responsive. Her temperature would soar and then return to normal. I stayed through the day with her. Her hospice social worker had been notified of Anita’s condition and she spent much of the day with us. A volunteer was arranged for to come in the late afternoon so I could get home and get my dog taken care of. My dog routinely visited the nursing home with me and the staff told me to bring him back with me for the night, which I did. Living alone, I had no one to care for him. I spent the night with Anita, watching her worsen almost by the hour. During the evening and night, there was a steady stream of staff coming in to tell Anita good bye. This was very insightful to me. Anita and I had never been close. I was with her a lot during the five years she was in the nursing home, but I really helped her out of a sense of duty rather than love. Listening to the staff relate warm and loving stories of Anita gave me a whole new perspective on her. I am sorry it took her dying for me to see her in a different light. I also learned patience from Anita, due to her Alzheimer’s and dementia. Anita died at 11:27 on Friday morning, the 9th of May. She would have been 89 on June 29th.
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