Thinking about .... Phyllis
Charles H. Bentley

Phyllis died just 10 years ago, the night before Thanksgiving in 1984, which fell on November 21 that year. I have marked my date book on that date as "Phyllis's Yortzeit", which I think means her death day.

We had spent the winter before that in Florida, and Phyllis had not felt well for the entire time we lived there. She had seen numerous doctors, and one of them finally gave what he thought was a definitive diagnosis--he thought she had hypoglycemia, and suggested a number of changes in her diet, which she followed religiously, but diet did not seem to make any improvement in her well being. She was active enough, but it seemed her activity came more from strength of character than firom good health.

I loved Florida, especially the escaping from bitter cold weather and from the constant fight with snow. Our house had a driveway that was 600 feet long, and I tried to keep it cleared with the snowblower attached to the tractor, and even after we had arranged for the local garage owner to plow it out there was always much to do keeping up with the new snow. So most of my memories of Vermont winters had to do with frozen fingers and hauling wood for the wood furnace. But Phyllis loved everything about Vermont-especially the view over the valley to the distant mountains, and of course the view of Burke Mountain that loomed over us. Driving north from Florida to Vermont in early April was always a more interesting ride than going in the other direction, and crossing the border from Massachusetts brought new life to Phyllis. Even I had to admit that there was nothing to compare with it, and it was such a pleasure to see Phyllis exult with joy at the sight of the Green Mountains, and especially at the sight of Burke Mountain (a Monadnock and not part of the Green Mountain chain) because when Burke suddenly came into view our house, built on a shoulder of Burke, was almost in sight.

Still, Phyllis's health did not improve, so doctors' examinations and treatments continued. At one point we thought it might be giardia due to our drinking water which came from a spring up the hill that really originated in a stream bed, and I started making plans to have a real well drilled, which we should have done in the first place, but then the romance of a spring-fed water supply would have been lost. Phyllis had a chest X-ray the same day that I stopped at the well-drilling location, and the next day we had the fateful conference with Doctor John Elliott, who by then had received the report from the radiologist. He said that she had a spot that looked like a tumor on her lung, and wanted us to go the hospital immediately where they would do a needle biopsy of her liver. We did, and they did, and learned a few days later that some cancer had been found in her liver, and now wanted us to return to the hospital for an exploratory operation to determine the extent of the liver involvement.

Our son John came over from Montpelier the day of the operation. It was to be done at the St. Johnsbury Regional Hospital. We were shagged out of Phyllis's room and waited in the family waiting room, but when I went to check on Phyllis I found that she already had been taken to the operating room. I inquired of a nurse on the floor, asking why no anesthesiologist had not visited with her before taking her to OR, but she didn't know. John and I went to the hospital cafeteria and soon a call came over the speaker system for Mr. Bentley to please come to the operating room, where we were met by a woman who introduced herself to us as a "nurse anesthetist", that she would administer the anesthesia, and that an anesthesiologist would be on call in case there was any problem. I had not heard of anesthesia being administered by a person who was not an MD, but there was nothing to be done at that point, since the surgeon was ready to start. So off they went, while John and I waited outside OR for the doctor to tell us what he found. After what seemed like hours Dr. Sergeant came out and announced coldly that her liver was very bad, and that he had trouble finding enough healthy liver tissue for the biopsy procedure. At that point I felt that he was pronouncing a death sentence, and, as it turned out, he was.

After Phyllis had recovered from that procedure and was well enough to go home, Dr. Elliott felt that she should be examined and treated at the Mary Hitchcock Hospital in Hanover, NHe and arranged for her to go there. Mary Hitchcock is part of Dartmouth University; it is a teaching hospital and has a fine reputation as an outstanding institution. Phyllis and I drove down to Hanover, New Hampshire, about 70 miles from our home in Burke, and Phyllis was admitted, She was subjected to many test, including bone marrow, CT scans, blood tests, X-rays--the works. She found the only sympathetic person attending her was a young woman resident, who warned her about the dangers of chemotherapy and had other heart-to-heart talks, some of which would have caused her to be thrown out of the medical profession if the senior doctors had heard her. But Phyllis had already made up her mind that she would not subject herself to chemotherapy. She told me that if she were younger and had children who depended on her it would be different, but since the most chemotherapy could offer would be a few extra months of life, proceeded by months of suffering and disfigurement, and asked me to find out if there was a way she could spend the last months of her life at home in peace. That night I called Dr. Tim Thompson, Dr. Elliott's partner, who informed me that there certainly was an organization called Hospice there, administered by the local Health Care agency, and that he was the doctor who worked with Health Care in the Hospice program.

The next day the assistant head of the Oncology Department came to Phyllis's room and said that the doctor who was head of Oncology was tied up at the moment and would be up shortly, and had asked him to get Phyllis started on the chemotherapy. From there on the conversation went something like this:

Phyllis: What chemotherapy? I'm not having chemotherapy.

Dr. Of course you are. That's how we are going to cure you.

P.: No I'm not. Why should I subject myself to those cruel chemicals when the most you can offer me is a few extra months of life?

Dr: We don't know if it will be only a few extra months of life. Dr. Soandso, and I are developing a protocol that we think has a lot of promise. It involves a certain combination of chemicals, and we think you are an ideal candidate to participate in this trial. We are looking for women between the ages of 40 and 70 who have small cell carcinoma of the lung, winch fits you exactly. If this treatment is effective we think we may be able to save other lives of people who have the same kind of cancer that you have.

P: Well, I'm not taking any chemotherapy, and I want to be released from this hospital and go home.

(By this time the head of Oncology had arrived and was participating in the conversation)

Dr: OK, if that's your decision, but I wish you would take this protocol and read it tonight and then decide. Then if you want to be released tomorrow morning I think we can arrange it.

P; Tomorrow? I'm talking about 10 minutes from now

Dr: All right, if that's your decision, I'll make the arrangement But please take this protocol and study it, and if you change your mind and decide to take the chemotherapy you can call me .

We were out of the hospital in 10 minutes and on the way back to Vermont.

Phyllis knew what she was doing. She didn't ask me for my opinion and I didn't volunteer any. It was her life, and it had to be her decision and hers alone. She had thought it through, and there was nothing I could have said that she had not already thought of and considered. She had asked me if I would stand by her and support her, and of course I said I would.

When we first got home Phyllis wanted to take another look at the land around the house, so I pushed her around in a wheelchair that I had borrowed or rented. She wanted mostly to go down to the pond, which we did. I remember that on the way the front wheel caught in a small hole and Phyllis almost pitched forward out of the chair. From then on I pulled the wheelchair so that she would fall back into the chair if we hit another hole.

The operations she had in the hospital were still pretty new at this time, so it was important that we allow the wounds to heal and so her activities were pretty well restricted. But as time went on and the healing was complete she became more and more active. Those months have merged together in my mind and I find it hard to put events on a time line, but I think it was about late September when she returned from her last hospital stay.

We had a conference shortly after she came home to establish a clear understanding of the role of hospice as operated by Caledonia (County) Home Health Service. The doctor and the Home Health people explained how their service was to make the patient comfortable and the doctor's to manage any pain, but that she would not receive any treatment for the cancer. If there should be a remission and she then wanted to receive treatment Hospice would withdraw during the time she received cancer treatment. Home Health described their service which would consist of frequent visits by a registered nurse, visits by an aide to take care of personal comfort and appearance, and even occasional housekeeping service. They would not be able to provide companionship or round the clock service. Home Health would be paid for their services by Medicare and would submit all claims to medicare for any special needs, such as oxygen and needed hospital furniture. I was to be designated Primary Caregiver, and in case of my incapacity another Primary Caregiver had to be named. Phyllis was pleased with all these arrangements.

She had several projects she wanted to work on, one being the distribution of her personal possessions. For several days we discussed who should get what, including what, if anything, the baby John and DeAnne were expecting. Finally Phyllis made lists, got out all her jewelry and bundled it up in separate packages. Buck and Pat came from Chicago, John and DeAnne from Montpelier and Tom and Avis from Waitsfield, and Phyllis distributed the packages to them (since most of this was jewelry, the distribution was mostly to the wives.) She wrote out a list for me of who should get certain things after she died, such as the silver service and tea service.

Another Project was to complete the Family History- she had been working on for a number of years. She knew that she would end the history at the time I returned from service in the Navy, so her plan was to copy selections from letters from me to her and from her to me. She set aside one hour a day for this project and by the time she had finished the history most of her strength had been exhausted

Tom and John came over one Sunday afternoon and got to understand what the situation was. Phyllis could hardly stay awake and asked to be taken to bed. Tom and Avis stood around the bed to talk with her, but she became irrational in her speech and we soon left to let her fall asleep, which she did. I really don't think they really appreciated how sick their mother was until then, and I think they finally realized the strain I was under. This was before I had hired the extra people, and I remember telling them that "the nights are a nightmare", and described some of the things that had happened. Anyway, it was a sobering experience for them and I think they were shaken by the time they left to return home.

We were then sleeping in twin beds, and on two occasions she got up in the middle of the night and fell. Once I heard her fall in her bathroom, and the second time she fell while getting out of bed. She agreed then that she would not attempt to get out of bed alone, and I began to realize that I was helping her all day long and was awake most of the night too, and that I would not be able to keep that up. So I found a couple of people who would come and relieve me while I shopped or did other errands, and while I slept. One woman spent the afternoon with Phyllis and another came at night and stayed there while I went to bed. I had rigged up an intercom that the sitter could hear Phyllis asking for something from her bed.

At one point a couple had called to cheer her up or just to see her, and it was obvious that they felt awkward about it. After they left Phyllis said, "Some people don't know how to deal with death".

Another time someone called and asked, in a singsong voice, "How are you?" to which Phyllis replied "Well, I'm dying" in a voice which almost, but not quite, showed annoyance. She never was short with people and was never anything but gracious during her illness. She let the now minister, a young woman who had never even met Phyllis before, pray over her, but would not join in the prayer because, she said, she had already made her peace with her god. I realized that Phyllis was right, as usual--some people don't know how to deal with death. I admit that I did not until then. Later a counselor asked me if we talked and cried together about her impending death, and I had to say that we did not. I don't know why, because we always talked frankly with each other. Maybe because we were using all our energies just getting through each day. Maybe because we already had spent most of our emotions.

It was now turning colder, and winter came very early that year. We had two cars which we kept in the garage, but the helpers frequently found that their cars were snowed in when they were ready to leave. So I parked one of our cars outside and had the sitters and Home Health people park their cars in the garage, and that solved some problems.

Phyllis's health and strength continued to worsen. The nighttime sitter left at 7:00 AM and I was with Phyllis all morning. I learned how to "transfer" a sick person from chair to bed or to another chair. I stood in front of her and bent my knees until my face was even with hers. She then put her arms around my neck and I put my arms around her waist. Then as I straightened my knees I pulled her up and she helped by holding the back of my neck. After some shuffling of feet to get to the new chair or bed, we reversed the procedure by my bending my knees again as she sat.

All this time Phyllis was getting oxygen, first from tanks through tubes into her nose, later from a "concentrator" which looked like a de-humidifier but extracted the nitrogen from. the air and produced oxygen. Fortunately she had no pain. The doctor had assured her that she would not have any pain, and he was right. She usually ate some breakfast but had little appetite the rest of the day.

The Home Health nurses were coming every day now, and were telling me that she couldn't last much longer. They were really wonderfull, and we became friends.

The Hospice volunteer who came regularly did not do much because there was nothing to be done that wasn't already taken care of, but she was a comfort to me and she and her husband continue to be my good friends to this day.

Finally Phyllis went into a deep sleep, although she never reached the coma stage. It gets dark early in Vermont at this time of year, and on the night of November 21 it was dark and snowing when the nurse from Home Health arrived, my regular attendant being away for a few days. I forget the name of that nurse (it was the first time she had been to the house) and she sat on a chair beside the bed while I sat on the other side holding Phyllis's hand. There were long pauses between breaths. As I held her hand there was a slight twitch in the hand I held, and I told the nurse that something is happening here. The nurse said that she had been timing Phyllis's breathing, and we waited for the next breath that never came. It was 7: 1 0 PM on November 21, 1984, which was the day before Thanksgiving, and I could find nothing to be thankful for, except that she had died at home, as she wanted, on her beloved piece of Vermont in sight of Burke Mountain, and she had not suffered pain. We had been married 46 years, 10 months, 7 days. She could have done anything, including becoming a doctor, which had once been her goal, but which she abandoned for the sake of devoting full attention to raising our children. - She wanted to start a dynasty, she once said, and made a good start on that objective by producing three boys. Now there are three grandsons, and two granddaughters so her dynasty is assured through at least two generations. If she had become half as good a doctor as she was as a mother she would have been a great physician. She deserved to have a longer life.

Her body was cremated and her ashes were spread by airplane over the north side of Burke Mountain, facing our house. Her spirit still lives.

December, 1994