My mother died of advanced breast cancer in
September 1999. She had battled the disease for 12
years – successfully for eight of those 12 years. In
1995 the breast cancer reoccurred in her lung and quickly
began to spread to the rib cage and sternum. After ten
years of successful treatment with hormone therapy, chemo
was required. We were told there was only
a fifty-fifty chance that Mother’s cancer would respond to
treatment.
The worst scenario proved true. After the first round of
chemo, the doctor described Mom’s cancer as “beaten down,
but not gone.” She said there would be further
treatment, but the best we could hope for was slowing
progression of the disease. Each round of chemo
would prove to be more difficult than the last. Four
months after the first round of chemo, Mom’s needs and the
sheer number of doctor and hospital visits forced me into
the role of sole caregiver. I left my job and stayed
home.
Those last 18 months of Mom’s life were undeniably a
painful, difficult experience, yet they were also beautiful.
Sometime during those 18 months, I came to the realization
that I had been blessed with a rare opportunity and
privilege – to love literally to the very moment of death
the person whose love had given me life. Prior to this
time, I had always believed that life was our greatest gift;
but my experience with suffering and death left me with a
strong conviction that faith, not life, is our greatest
gift. Life is ever changing, life ends. Faith is
a constant – it is a gift that is always there, if we just
accept it.
When you are dealing with the terminally ill (particularly
in the role of caregiver), life as you knew and loved it
suddenly comes to a screeching halt. You are not only
dealing with your emotions (watching someone you love and
care about die), you are also dealing with their fragile
emotions. The terminally ill person has to come first.
You really have the easy task. You only have to deal
with losing the person; they have to deal with losing
everything and facing life’s ultimate limit – death.
I had come from a corporate background where I was trained
to identify the problem, assess the situation, and come up
with solutions. I was trained to control the situation
– not to allow the situation to control me. Suddenly,
I was powerless at a time when I desperately wanted and
needed to be in control. This thing, this disease, was
rapidly changing, killing my mother and my best friend.
I couldn’t do anything about it. I wasn’t in control
of the situation. At the same time, Mom seemed to be
ignoring the hopelessness of her situation – always planning
for the future, focusing only on the positive things the
doctor said, asserting that her prayers would be answered
and the next round of chemo would put her cancer in
remission.
On the outside, I worked hard to maintain an appearance of
being in control. An attitude of life as usual was
necessary to keep up Mom’s morale. A positive attitude
was more important, more potent than any treatment.
Inside I was angry, angry at this thing, this disease that
couldn’t be controlled -- angry that I could not make things
better. I don’t ever recall being angry with God in
the sense that He was causing this – but angry in the sense
of “where are you when I need you the most?”
Initially you are praying for the big miracle, a cure, with
the expectation that it will happen. When you are
slapped with the reality that it is not going to happen, you
have to search for or find a new way to renew your faith –
your relationship with God. To cope, you have to learn
to recognize what I call the “little miracles” – the people,
places and things that help you over the rough stops.
A “little miracle” was the doctor who was sensitive to Mom’s
need for hope and only gently hinted at the hopelessness of
the situation. She took the time and saved the
detailed explanations for private meetings with me, making
sure I knew what to expect. A “little miracle”
was the friend who had walked the same road and provided
support when others were telling me to think of myself, to
pursue my career and pay someone to care for my mother.
A “little miracle” was the call from a friend
who ran his own business asking, “Could you work from
home and do some typing and bookkeeping for me?”
He made it possible for me to provide the care my mother
needed and still earn an income.
These “little miracles” eventually add up to what really is
the “big miracle” – the miracle of acceptance for you and
the terminally ill patient. One day Mom looked me in
the eye and asked, “Do you think it’s hopeless?”
It was obvious she realized things were not going to get
better, yet still seemed to want reason to hope.
It was no small miracle that I had the grace and wisdom to
respond, “You’ve always told me nothing was hopeless
if I trusted God.” She accepted and seemed pleased
with this answer.
With acceptance you experience a profound sense of peace and
joy. It’s nothing like the surface peace and joy that
I had experienced at other times in my life.
Under normal circumstances, you look outside of yourself for
peace and joy. When faced with your limits, when
coming to terms with the ultimate limit of death, you are
forced to look inward. Your peace and joy cannot come
from other people or sources; it has to come from within
yourself, from a “gut-wrenching” faith that allows you to
let go and accept.
It has been several years since Mom’s death. I am
still awed by her and the other cancer patients I met during
chemo treatments. In the face of hopelessness, they
never gave up. They struggled against insurmountable
odds to continue to live even when life had little quality
left. More importantly, they appeared to struggle to
continue giving and contributing to their families, friends,
and the world in general.
When I look back at those last 18 months of Mom’s life, I am
amazed that in the face of hopelessness and death, life went
on as usual. We celebrated birthdays, holidays, we
laughed, we cried, we did the mundane everyday tasks.
A life was ending; but through it all, life went on as if
nothing was happening.
Dealing with suffering, accepting my limits and life’s
ultimate limit experience – death — changed me. I’m a
stronger more compassionate person. More importantly,
I now view life through the eyes of faith. I was
somewhat cynical about theories that God never gives us more
than we can handle and answers every prayer. I
definitely felt like I had been given more than I could
handle. He doesn’t answer every prayer – there was no
cure. He does offer the gift of faith. If we
accept that gift, we can handle anything — even suffering
and death. If we accept the gift of faith, we do find
His answers and they become ours – they become our “little
miracles.”
I thought Mom was ignoring the hopelessness of her situation
when she insisted that her prayers would be answered.
I later realized that her confidence, her trust in God and
prayer, the acceptance of that gift of faith empowered her
to keep trying, to live life to the fullest against
insurmountable odds. I came away from this experience
certain that while life may be a gift, the greatest gift of
all is faith.
Life is a gift that is thrust upon us whether we want it or
not (like the unwanted tie or blouse we get as a Christmas
gift). Faith is a gift that is freely given – is
freely offered. We decide whether to accept or reject
it. I came to realize that death and suffering are a
part of life and, if understood, are not devastating for the
dying or those whose lives they touch. It has really
been hard to explain this to people who think I should be
devastated by the experience and cannot comprehend how I can
say I treasure those 18 months. Maybe I’ll never
be able to explain it – maybe it is something you have to
experience. It is an encounter with the mystery of God
– a God who never promised life without suffering or joy
without sorrow, but He is a God who provides comfort for our
tears and lights our way with His “little miracles.”
Dianne Ullrich was a caregiver for her
mother. She spent 15 years in the corporate
sector and has volunteered as a religious
educator for over 25 years teaching students
ages pre-school to adult. She writes much
of the material she uses in her classes and
created a religious pre-school program for
children with special needs.
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