NHPCO is pleased to share an excerpt from Death is but a Dream, with permission of the publisher Avery, a member of Penguin Group (USA) LLC, A Penguin Random House Company.
For some patients, the peace and understanding gained at end
of life is achieved through dreams and visions that wash over them, summoning
up images and emotions that soothe and appease. Others attain perspective
through a more conscious process of reflection that they methodically apply to
their end‑of‑life dreams and visions. These are patients who are keen on trying
to understand the mysterious process through which death is somehow turned into
a familiar, even welcome friend at life’s end. This was true of Patricia, for
instance, who had been so eager to help us move our research along. The
conclusions we reached through the study were truly remarkable, but it took
patients like her to give them a human face. Patricia had such an exceptional
recall of her end‑of‑life dreams and visions that she became one of our richest
points of access to the comforts provided by these experiences.
When she arrived, Patricia took Hospice Buffalo by storm.
She was ninety years old, and nothing about her past, physical condition, or
appearance could have prepared us for the engaged, alert, and witty person she
revealed herself to be. She had advanced pulmonary fibrosis and often struggled
to breathe at rest despite being permanently connected to a portable oxygen
tank. Patricia’s condition was so advanced that she could not walk across the
room without experiencing severe respiratory distress, but she made up in
verbal delivery what her body couldn’t deliver in mobility. She spoke in as
uninterrupted and fast a flow as an auctioneer. Talking to her for any length
of time inevitably eclipsed her physical symptoms or the medical equipment she
depended on, so much so that someone once remarked that she wore her nose tube
like an accessory. She was so self-possessed that anything connected to her
body, artificial or otherwise, looked like an extension of her, no different
from the horn-rim glasses or the butterfly hairpins she wore. She was also
intellectually vibrant and curious, and we found ourselves thinking of her more
as an interlocutor than as a patient. Patricia maintained a desire to engage
and express herself right up to the very end, even when her disease had
progressed to the point where she longed to die.
Her mother had died of pneumonia when Patricia was nine, and
at thirteen, she’d begun taking care of her father, who had been diagnosed with
the same disease Patricia now had, pulmonary fibrosis. They did not have
access to the social services that are now available to severely ill patients
and their families, so caring for him was a full-time job. Patricia’s
description of this period in her life revealed how, in the post-depression
era, maturity at an early age was not the luxury it became for later generations
of American teenagers: “I had to be a caretaker from the time I was very, very
young. It was a difficult role to play at any stage but particularly difficult
when you are thirteen. I never resented it, though, not until I came to these
crazy dreams.”
Patricia’s “crazy dreams,” as she put it, fascinated her.
She wrote extensively about them in her diary and happily shared her abundant
commentary with us. She was grateful to be around people who not only took them
seriously but with whom she could discuss their singular nature. “It isn’t the
morphine, then?” she asked when we first broached the topic, relieved to know
that experiences that mattered to her were not just drug-induced
hallucinations. And after pleading with me not to sugarcoat what was happening
to her, she added, “So there is a pattern to this thing? Being bossy and
inquisitive, I am going to ask you a hard question: Is there any way of knowing
where on this graph I am?” She had realized that there was a connection between
dream frequency on the one hand and one’s closeness to the end on the other, so
there was no stopping her analytical mind from trying to identify a logic to
the changing patterns of her dreams. Accustomed to managing lives from a young
age, she was now working on managing her last moments, including anticipating
her time of death.
As her condition worsened, she increasingly spoke of death
as deliverance, so much and so often that her grown children became
uncomfortable, asking her to refrain from mentioning it in their presence. I
could not blame them. Here was the mother they cherished, who was talking about
her death, which was also their loss, as something to scratch off her to‑do
list. It felt to them like she was discussing her pre-death dreams as if she
were conducting a laboratory experiment.
I knew better than to mistake this obsession with death and
dying for cheap morbidity. Patricia had spent her life taking care of others.
She had tended to her dying father at an age when most kids are preoccupied
with fantasies about running away or stealing a smoke; she had lived through
the war, the rationing system, the anxiety of not knowing whether her fiancé
would survive his armed service to the country; and she had raised kids in a
household where she’d had to “wear the pants.” Having spent a lifetime managing
others, she was now preparing for her own exit, as much for her sake as for
theirs. After all, only the unexpected can be traumatizing, so preparing
herself for death was one way of averting trauma, for herself as well as for
her loved ones. Patricia had spent her life worrying about them, and she was
not about to suddenly change course at its end. If anything, people’s character
traits get more pronounced with age. The following passage that she
once read to me from her diary illustrates this best: “I am of no use to anyone
now, I hate to think that. I have to get help with stuff and it will only get
worse, I am sure. So that is why I am saying let’s get on with it. I dearly
love all the ones that are still here, but I can’t do anything for any of them,
and it is too bad that they have to bother about me. So this morning, I’d like
to cry but I don’t. I’d like to have my mother tell me it is ok. I’d like to
wake up and walk up to Chuck [her husband] and take him by the hand and walk
into the eternal sunset, but that is another story, another breath, another
day.”
Patricia was alternating between fear of the unknown and a
sense of defeat, disguising both under a veneer of casualness she did not truly
feel. It was a facade meant to reassure herself as well as others. After all,
she was not one to draw attention to her troubles. “Everyone has problems,” she
would say. “I would never go down the hall and complain, because there is
always someone worse off than I am.”
Certainly, there were extreme episodes of breathlessness
that would coincide with her feeling utterly dejected and pleading for a swift
death, but until the last week of life, these pleas were more cries of
exasperation than of conviction. On her deathbed, several days before the end,
she admitted as much: “You try your darndest to get better because so many
people depend on you, but now I am content to just leave everything. That
started just recently.” This was also when she somehow found the strength to
remember and recite Hamlet’s famous soliloquy: “To die, to sleep. To
sleep, perchance to dream—ay, there’s the rub. For in that sleep of death what
dreams may come.”
Patricia had a way of making me do homework I should have
attended to in college; I once again had to resort to Google to brush up on
what it was that concerned Hamlet about the afterlife. I did so later that day
and smiled, remembering how several weeks earlier, she had apologized for
inadvertently interrupting me when I was handing out instructions to staff:
“You’d better watch out or I’ll be sitting in your seat soon,” she said. I was
going to miss her.
For Shakespeare’s forlorn hero, the fact that we don’t know
what lies beyond “when we have shuffled off this mortal coil” is what makes us
stretch out our suffering for so long. I suspect that what kept Patricia
hanging on to life for as long as she did despite mounting pain and her
exhortations to the contrary had everything to do with love: of family and of
her research team at Hospice Buffalo. I am also grateful that her end‑of‑life
experiences helped bring her, one of the most selfless human beings I knew,
back in touch with her core self.
On one of my last visits with Patricia I asked her, “Who
would you want to see in your dreams going forward?” even though I already knew
the answer. As predicted, she replied, “I’d like to see my mother because I
never got to know her.”
I went to see Patricia one last time before she died. She
could no longer speak and looked unresponsive. I bent over and asked her in a
whisper if she’d seen her mother, not truly expecting an answer. She smiled,
nodded, and pointed upward.
-###-
No comments:
Post a Comment