Life's Last Gift by Charles Garfield

Probably one of the things—and there are many—that scare us as cancer caregivers, is asking, “Can I really do this if my partner is dying?” 

Of course, we start that fear early in the process. Maybe at diagnosis, or after chemo, or after the side effects kick in, or when there is another set of tests and the prognosis is worse than we’d hoped. “What if he’s dying?” “What if she’s going to die?” and the deep fear, “What if I can’t do that?” “What if I can’t be the person who can really be present and loving, as we go through this?”

Relationships are all about intimacy: emotional, psychological, and physical, but being with someone who is dying is one of the greatest, but least desired, intimacies of any relationship. So, who is going to teach us or guide us on how to do that?

Now we have a book, a very beautiful book, that can guide us. Charles Garfield, Ph.D. has written “Life’s Last Gift” (published by Central Recovery Press) and Garfield is the honest, kind, by-your-side, kind of coach for how to be--truly be--present with your loved one, your partner, who is dying.

You know by now, here in CancerLand, that we get too much advice, too many platitudes, too much weird sympathy—most of it from folks who don’t really know the inside of this place. Charles Garfield has had lots of our experiences and he has the language and heart skill to speak to us caregivers right where we are—and right at that place we most fear: being fully present when the person we love is dying.

I highly recommend this book to cancer caregivers—everything Garfield offers in this book also applies to the day-to-day communication, self-care, and strategies of care with or without an end-of-life diagnosis. And, this book can be a deeply caring gift for your friend, colleague or parishioner who is caring for someone who is dying.

“Life’s last Gift” comes from the kind of experience most of us don’t want to have, but Charles Garfield has taken his own grief and losses to help the rest of us, as we attempt to do well what no one wants to do.

The Upside to Dying of Cancer

Stay with me on this one please. Yes, it’s just a tad morbid—but there is, I swear, an upside. This may be one for small group discussion—with or without wine, with the girl friends, couples at dinner, adult siblings, workplace lunch room.

But you have to be well past the conversational opener that begins, “If I was going to die…”. We’re adults here and we know there is no “if”. Still balking? Still believe in Superman? Come on. 100% of human beings will die. So, given that, what’s the best way?

If you are over 45 you have begun to see some deaths—grandparents, parents, friends, etc. You’ve witnessed enough different kinds of illnesses to have a sense of the good and the bad and the horrid. So how about your death?

I have seen some awful, prolonged illnesses—brothers with ALS and Antitrypsin disorder, parents with strokes—the sudden death kind and the lingering in a coma for years kind. I’ve also spent time with many grieving people—who are ill or who are losing or who have lost a loved one. And here’s my take on this best death possibility.

A sudden heart attack is a poor way to go. In terms of less pain and little personal suffering it’s good, but no preparation, no good-byes, no chance to give things to people, too many things unsaid, too many messes and if you like control—you get zip. Someone else decides what to do with your kids, pets, clothes, books and ideas.

Ditto for strokes. With a stroke you die outright (same as heart attack) or you linger in a coma or semi-conscious for years costing the family money, grief, and painful ambivalence about you. No thanks.

Lou Gehrig’s Disease (ALS) the horror belongs to everyone—the patient (your mind works but not your body) and the caregivers die one thousand times over. (Been there. Done that.) Upside: you know what is going on, you do get to plan a little, but then you mostly watch.

So this brings us to cancer. Dreaded cancer. The disease we are trying to cure. But here’s the thing; if we cure cancer we are left with the choices above. With many cancers there is some time to live between diagnosis and death, there is some choice about what to do, there is time—months or years-to get used to the idea that the disease will end your life. The perfect cancer—if I dare say that --is one that gives you 12 to 18 months to live so you can talk, plan, visit people, try some treatment options, maybe do something on your bucket list, have the chance to personally hand your books, jewelry, artwork, favorite scarves etc. to your friends. It’s the illness with which, should you choose, you could, sort of, go to your own funeral.

Once you accept that you will die, and really grasp that in your heart and head, cancer has its pluses.

Ways to Go

If you have dealt with cancer, as patient or caregiver, you know the questions from friends and acquaintances: “Is there a family history?” “Did she smoke?” “Wasn’t he overweight?” “I think he had a lot of anger?”

Translation: There must be some reason that you have cancer and I won’t get it. However, we have numbers to help us sort the crowd. And to remember that cancer is not a moral issue or a character weakness or a personal failing. Maybe this also helps if you are asking, “Why Me?” In truth, why not you?

From the National Safety Council we have statistics that reveal what holds the greatest chance of ending a life. Here are some of the lifetime probabilities of a US resident dying. These are expressed as odds of dying:

Heart disease: 1 in 5

Cancer: 1 in 7

Stroke: 1 in 24

Falling: 1 in 128

Pedestrian accident: 1 in 626

Drowning: 1 in 1,008

Airplane accident: 1 in 5,051

Lightening: 1 in 79,000

So this tells us that cancer is very common with little discrimination and so shouldn’t we all be learning more? It also tells us that heart disease should be our biggest worry, so swap out those pink ribbons for red ones. But the biggest thing we need to be facing is our own mortality. The total odds of dying, of any cause, are 1 in 1. 100% of us will die. You’d think, given that, that we’d get a little bit better at dealing with it.

Last Days, by Donald Hall

“It was reasonable
to expect.” So he wrote. The next day,
in a consultation room,
Jane’s hematologist Letha Mills sat down,
stiff, her assistant
standing with her back to the door.
“I have terrible news,”
Letha told them. “The leukemia is back.
There’s nothing to do.”
The four of them wept. He asked how long,
why did it happen now?
Jane asked only: “Can I die at home?”
Home that afternoon,
they threw her medicines into the trash.

Jane vomited. He wailed
while she remained dry-eyed – silent,
trying to let go. At night
he picked up the telephone to make
calls that brought
a child or a friend into the horror.

The next morning,
they worked choosing among her poems
for Otherwise, picked
hymns for her funeral, and supplied each
other words as they wrote
and revised her obituary. The day after,
with more work to do
on her book, he saw how weak she felt,
and said maybe not now; maybe
later. Jane shook her head: “Now,” she said.
“We have to finish it now.”

Later, as she slid exhausted into sleep,
she said, “Wasn’t that fun?
To work together? Wasn’t that fun?”
He asked her, “What clothes
should we dress you in, when we bury you?”
“I hadn’t thought,” she said.
“I wondered about the white salwar
kameez,” he said –
her favorite Indian silk they bought
in Pondicherry a year
and a half before, which she wore for best
or prettiest afterward.
She smiled. “Yes. Excellent,” she said.
He didn’t tell her
that a year earlier, dreaming awake,
he had seen her
in the coffin in her white salwar kameez.

Still, he couldn’t stop
planning. That night he broke out with,
“When Gus dies I’ll
have him cremated and scatter his ashes
on your grave!” She laughed
and her big eyes quickened and she nodded:
“It will be good
for the daffodils.” She lay pallid back
on the flowered pillow:
“Perkins, how do you think of these things?”
They talked about their
adventures – driving through England
when they first married,
and excursions to China and India.

Also they remembered
ordinary days – pond summers, working
on poems together,
walking the dog, reading Chekhov
aloud. When he praised
thousands of afternoon assignations
that carried them into
bliss and repose on this painted bed,
Jane burst into tears
and cried, “No more fucking. No more fucking!”

Incontinent three nights
before she died, Jane needed lifting
onto the commode.
He wiped her and helped her back into bed.

At five he fed the dog
and returned to find her across the room,
sitting in a straight chair.
When she couldn’t stand, how could she walk?
He feared she would fall
and called for an ambulance to the hospital,
but when he told Jane,
her mouth twisted down and tears started.
“Do we have to?” He canceled.
Jane said, “Perkins, be with me when I die.”
“Dying is simple,” she said.
“What’s worst is… the separation.”

When she no longer spoke,
they lay along together, touching,
and she fixed on him
her beautiful enormous round brown eyes,
shining, unblinking,
And passionate with love and dread.

One by one they came,
the oldest and dearest, to say goodbye
to this friend of the heart.
At first she said their names, wept, and touched;
then she smiled; then
turned one mouth-corner up. On the last day
she stared silent goodbyes
with her hands curled and her eye stuck open.

Leaving his place beside her,
where her eyes stared, he told her,
“I’ll put these letters
in the box.” She had not spoken
for three hours, and now Jane said
her last words: “O.K.”

At eight that night,
her eyes open as they stayed
until she died, brain-stem breathing
started, he bent to kiss
her pale cool lips again, and felt them
one last time gather
and purse and peck to kiss him back.

In the last hours, she kept
her forearms raised with pale fingers clenched
at cheek level, like
the goddess figurine over the bathroom sink.
Sometimes her right fist flicked
or spasmed toward her face. For twelve hours
until she died, he kept
scratching Jane Kenyon’s big bony nose.
A sharp, almost sweet
smell began to rise from her open mouth.
He watched her chest go still.
With his thumb he closed her round brown eyes.