When my father began our phone conversation with
the words, "Are you sitting down?" I knew the news
to follow would not be good; but I never in my
wildest dreams imagined he would tell me my
73-year-old mother was terminally ill with
metastatic lung cancer. I had not even begun to
prepare myself for the day I would lose either one
of my parents. A lucky gene pool had caused me to
believe confidently that both would live well into
their nineties. No such luck.
Every day a daughter or son somewhere, or a
sister or brother or parent, gets the news that a
cherished loved one has been diagnosed with a
terminal disease. The shock, accompanied by a
ferocious sense of foreboding and a powerful dose of
premature grieving, can be overwhelming and
paralyzing. Yet we need not be consumed by the
depths of despair; and for the ones we love and will
lose, it is vital that we climb out of the depths as
quickly as possible so they won't fall in
themselves.
Two days after getting my father's call, I
suddenly had a moment of clarity and an epiphany: my
mother's life was going to end sooner than we
expected or wanted, but it hadn't ended yet. So I
committed myself to helping my mother live, and live
joyfully, until I found myself in the position of
helping her die.
If you receive the dreaded call, what can you do?
How can you inject living into dying?
How can you let the sunshine break through the
menacing cloud overhead?
1. First, reel yourself in from that
place of anticipatory grief to which the
diagnosis catapulted you. No one has died yet, so
stop grieving a loss that hasn't occurred. Rather
than anticipating death, we can choose to embrace
and enjoy life. The story of my mother's life was
still being written, and so there was no need to
allow our minds to fast-forward to the story's
ending. We were intent upon writing quite a few more
chapters.
2. Realize that while there is nothing
you can do to keep your parent or loved one from
dying, there is much you can do to help him or her
keep living. For us, tomorrow was a day to
look forward to because of the possibilities and
happiness it could bring, rather than a day to dread
because it would bring us one day closer to
death. Make what time remains a period filled with
purpose and passion.
3. Stay in the moment. Don't
focus on what lies ahead. It is possible, and good,
to crowd out thoughts about dying by injecting acts
of living. You can keep thoughts of what's to come
at bay by being intentional about savoring every
aspect of what you are experiencing while you are
experiencing it. And shouldn't every one of us do
this every day anyway, whether we know our days are
numbered or not?
4. Don't expect miracles, but
don't stop believing in what is possible. While the
disease will eventually render certain things
impossible, focus on all that is still possible.
Even though we were subconsciously or privately
aware that we might be celebrating certain holidays
or milestones together for the last time, we chose
to look forward to what came next. And rather than
focusing on last times, we opted to find things we
could do or enjoy for the first time. For example: a
first mother-daughter side-by-side mani-pedi.
Unforgettably wonderful!
5. Don't stop planning. My
mother and I did not use a calendar to cross off,
with relief, days that had been survived. Rather, we
used the calendar to record, with anticipation,
plans that were being made—appointments, outings,
get-togethers, trips—for next week, next month, and
even next summer.
6. Have fun. Make fun. Be happy!
It is OK to laugh while hearts are breaking; in
fact, it's critical. Laughter is good medicine. So
laugh—with abandon. Take pictures. Lots of them. We
filled two photo albums. Who would ever have
imagined how much my mother would do, where she
would go, whom she would meet, and how many people
she would touch after her diagnosis? Who could ever
believe how happy she was that last year? The photos
provide evidence...and also many wonderful reminders
of life, love, and laughter.
7. Help your parent or loved one retain
things that matter most to someone facing death:
routines, relationships, a sense of self, and, above
all, a sense of dignity. Keeping a calendar,
carrying a pocketbook, getting dressed, getting
together with friends, shopping for holiday gifts,
making the grocery list—little routines like these
inject a semblance of normalcy into an existence
that feels anything but normal or routine,
especially as disease takes its toll. And remember
that we feel good when we look good. My mother was
never without lipstick or earrings on the days I was
with her; we kept our nails polished and we shopped
for new clothes for the coming season. Why not?!
8. Gently nudge, but don't push.
There will be days, and there will come a point,
when certain things just aren't possible or when
your parent simply won't feel physically (or
mentally) up for what you think she might want to do
and enjoy. Although I was intent on helping her find
joy in every day, I did not want my mother to be
afraid to say "I can't" or "I don't want to." I
didn't want her ever to feel as though she was
disappointing me or anyone in the family if she
succumbed to her fatigue or anything else she
struggled to overcome.
9. Allow as much opportunity for your
loved one to be doing rather than always
being done for or done to. A dying person needs and
deserves to be treated and valued as a human being,
as a person rather than a patient. The notion of
being helpless and a burden to loved ones is as
demoralizing and demotivating as anything can be.
Whether folding some laundry or putting the tape on
Christmas presents that I was wrapping or opening
the mail or looking up a phone number or wheeling
herself to the refrigerator to pull out a yogurt for
herself, it was important for my mother to feel she
was still "good for something" and still the lady of
the house—her house, even when it seemed overtaken
by caregivers.
10. Welcome hospice as a companion and
guide on the journey of life as the journey
comes to an end. Hospice staff and volunteers are
angels on earth. Thanks to them, when we reached the
final destination we all—my mother and those she was
leaving behind—experienced peace and gratitude we
had not imagined possible at such a sorrowful time
in our lives.
My mother lived, fully and joyfully, for a year
and one day from her diagnosis.
A diagnosis of "terminal" cancer does not
terminate living. In reality, each of us has already
received a terminal diagnosis; we just don't know
how close we are to the finish line. Without denying
the reality that someone we love is going to be
leaving the party sooner than we expected or want,
it is possible to suppress that reality and go about
the business of enjoying the party while it lasts.
And it might last much longer than you expect. Or it
might not, but it can still be a lot of fun.
Linda Campanella is a
management consultant; her solo practice serves
nonprofit organizations of all sizes and missions.
In previous stops along her career path, she was a
corporate executive in the aerospace industry, a
senior administrator at a private college, and an
international trade negotiator in the executive
branch of the federal government. She is the author
of the award-winning memoir When All That's Left of
Me Is Love. More information about her book can be
found at
www.lindacampanella.tateauthor.com.
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