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