For almost four months preceding
De’s death, we were focused not on dying but on living well, and for
that and so much more we owe an un-payable debt to Hospice and
Palliative Care, Inc., of New Hartford. For a host of personal and
cultural reasons, choosing to enter hospice care can be agonizingly
difficult. When responding to terminal illness our society
automatically invokes war metaphors. Pick up the daily newspaper and
you’ll read of someone having “fought valiantly,” having “never given
up.” Several obituaries of my husband led with having “lost his battle
with lung cancer.” Not to give up means undergoing treatments despite a
diagnosis that leaves no doubt as to the outcome. It’s no wonder, then,
that in many people’s minds choosing hospice means giving up the fight,
surrendering to death. It’s the fight and the attendant suffering,
physical and emotional, that people looking in from outside that circle
of pain find admirable. Thanks to Hospice’s help on any number of
levels, De and I were fortunate to have lived in a circle of comfort
and security, intimacy and joy.
We fought no battles because at
the very outset we won by choosing Hospice over treatment. We won
because we lived life as fully as we could, with as much dignity,
humor, and sweetness as we could wrestle from each day. We won because
De died without experiencing any physical or emotional torment. We won
because Hospice was there from start to finish, providing all the
resources and hard-won knowledge at its command. Moments after De died,
I found myself paraphrasing a passage from one of St. Paul’s letters:
We had fought the good fight. We had finished the course. We had kept
the faith.
While recalling my husband’s last months, I came
across an interview with the novelist, Richard Ford, in which he
explains why he once chose to write in the present tense: “The novel
gets to say we’re present tense here, and yet we can read the present
over and over again. Which is quite a nice thing to do, we’d all be
better off if we could not stop time but slow it down a little bit, and
live the pleasant things more pleasantly. . . .”
Looking back at
De’s last months, I remember it as a luxuriously long stretch of
closeness and simple comforts. Time seemed to slow down because Hospice
helped to live so securely in the present. We weren’t looking
regretfully behind our shoulders at the past; neither were we looking
anxiously ahead. When friends and family would call or write for the
first time, they would be tongue-tied and awkward, fearful of piling
pain or what they assumed was a mournful, pained existence. De and I
did the cheering up, reassuring them that we were safe and cared for,
that we could turn our energies toward ourselves: to a good meal, a
glass of wine, along with yet another Netflix movie. During one of the
worst winters in recent memory, living on a country road that went
unplowed for long hours, we never had to concern ourselves with
essential services since all the equipment and medications were
delivered to the house. More important, De didn’t have to steel himself
for cancer-related pain or even discomfort, not with liquid morphine on
the bed stand. I am convinced that he lived as long as he did because
he was so well cared for in mind and body, living by his own needs and
desires. So much for the irrational fear that Hospice speeds up death
when, in fact, it helps to create a secure and satisfying life lived in
the present tense.
If I could talk face to face with someone
contemplating Hospice care, I would stress how precious time is when
it’s running out, and how crucial it is to have time not for its own
sake but time in which to live with confidence and tranquility in the
present. During both the pre-admission and the admission interviews, we
were quietly dumbfounded when congratulated on our decision to enter
Hospice early. There was no doubt that De was terminally ill; his
doctor had confirmed, in writing, that he had six months or less to
live; we had decided, weeks in advance, that we would not pursue any
cancer-related tests or treatments. We couldn’t wrap our minds around
anyone considering our decision “early.” In our minds, De was admitted
to Hospice just in time.
From that chest x-ray to diagnosis to
admission to Hospice, a mere three weeks passed, but it was a long,
anxious time. Everyday I watched De grow weaker; everyday I feared he
would suffer a horrific fall and we would have no choice but to call
the ambulance and go to the hospital, and if he were admitted, my fear
was that he would never return home. A well-meaning pulmonary
specialist wanted first a biopsy. Only when we discussed canceling the
procedure did the doctor admit that the bronchoscopy might not provide
a definitive diagnosis. Almost another week was wasted because we
acquiesced to the doctor’s request–admittedly, he said, a “long
shot”–that De take Prednisone for a week so as to rule out a
non-malignant condition. All the while, however, the pulmonary
specialist is repeating the same sentence: “Lung cancer would be
numbers 1, 2, and 3 on my list.” The teeter-totter of yes, it’s
malignant but maybe its non-malignant made me feel like Alice falling
through the looking glass. Once again we cancelled an appointment and
made the call to Hospice. From the time of the first chest x-ray to
admission to Hospice: 20 days of agonized waiting, and worse: for the
space of a few minutes, because of an enhanced sense of well-being
caused by the Prednisone, my husband experienced the baseless hope that
he wasn’t terminally ill, that perhaps it was just an “infection.”
If
we had not been unwaveringly intent on entering Hospice, those 20 days
could well have extended another 20, even more. I remember crying from
sheer relief as De signed the Hospice admission form. I knew we were
safe from the ministrations of well-meaning doctors whose professional
lives revolved around treatment options. More to the point, we were in
the hands of those who didn’t look away from the reality that wasn’t
going away.
The second, equally crucial point I would make to
someone contemplating Hospice would be about pain. Hospice talks about
“pain management,” and while it’s an accurate description, it has a
blandly clinical sound. There is a generally held assumption that
terminal illness and pain go hand in hand. De never had one moment of
cancer-related pain. The times when he experienced shortness of breath,
the liquid morphine provided immediate relief. We couldn’t help but
laugh at the fact that although De was dying of lung cancer, his main
complaints were the cannula’s irritation to his ears and nose and an
ingrown toenail.
As for emotional distress, my initial fears
revolved around my having to “manage” De’s pain, should it come. Both
the liquid morphine and the potent anti-anxiety drug, Ativan, were at
the ready; Maryann, the nurse on call, was a phone call away. Even so,
I can well imagine that many people would think that a hospital setting
would be the more rational and caring choice, that there would be
professionals who could make the best decisions, in a flash, that would
make all the difference. I have no doubt, however, that there is no
more rational and caring choice than Hospice. De and I were together;
the necessary pain medications were at the ready, and professional help
was available around the clock.
We were lucky. De had almost
four good months under Hospice care. And then there were the last three
days of his life when he was actively dying. Time abruptly lost its
leisurely quality; instead, we were in a crisis mode that Hospice was
fully equipped to address. In record time Maryann ordered a hospital
bed sent and assembled; Mary, the night nurse, arrived on yet another
snowy evening to insert a catheter and to ease De through his last two
nights on earth. When he began experiencing terminal restlessness, the
liquid morphine and Ativan swiftly countered the biochemical reaction
of his organs’ breakdown. As a result, De was calm and content, able to
communicate his love and his sweetness until almost his last breath.
So
far I’ve been talking about Hospice as a faceless entity when, of
course, it is the people of Hospice who make it the refuge and the
lifeline that it is. Many of my contacts were only by telephone, but
they were no less precious for that. Just about every morning as I
waited for the clock to change from 7:59 to 8:00, I used to wonder how
often Frank of the calm and reassuring voice would arrive at work
knowing that the phone would begin to ring as soon as Hospice
officially opened. On weekends there was the nurse on call, Maryann,
whose voice had that same gentle, soothing quality. More important,
however, she possessed the ready knowledge and quick thinking that in a
time of crisis–namely, my husband’s last weekend–enabled us to weather
the worst together.
But no words can adequately describe our
debt to De’s nurse, Roseann. We looked forward to her bimonthly visits
not only because of her endless supply of concrete help and advice but
also because of her partnership in De’s dying. It’s telling that the
word, “dying,” never surfaced during those visits. The reality of De’s
dying was always the elephant in the room, but it was a docile,
house-trained elephant that sat quietly in the corner. Instead,
Roseann’s visits were all about life right here and right now, about
what De wanted, about what De feared, about what I needed to know to
make him as comfortable and as easy in mind and spirit as possible. In
our warm, music-filled bedroom, time did seem to slow down for the
space of her visits.
Trust can be hard to come by and harder to
keep, but from start to finish we had it with Roseann. Early on De
shared with her his lifelong fear of strangling or choking–a fear that
naturally came to the fore when he was diagnosed with lung cancer.
Roseann quietly assured him that he would never experience that terror,
and he never did. The day before he died, when he was semi-conscious
for the most part, Roseann was at his bedside for three hours. When she
arrived and leaned over to say hello, De opened his eyes and greeted
her with one of the endearing nicknames he had christened me with: “Hi,
Pussycat. . . . Oh, maybe I shouldn’t call you that.” I quickly assured
him that he was allowed more than one pussycat in his life. Roseann–the
embodiment of Hospice’s great and wonderful gift -- had more than
earned that love-filled nickname. |
