A TESTIMONY OF A PARENT WHO SUFFERED LOSS – THE MIRACLE OF HEALING

By Helen du Plessis
Tel: (012) 667 2326

i) Introduction
ii) The Reality of Pain and Loss
iii) Dealing with the Devastation
iv) The Miracle of Healing
i) INTRODUCTION

In order to live we have to commit ourselves daily to unknown hopes and act on insufficient knowledge. We
cannot borrow wisdom or understanding from people who have lived longer and experienced more than we
have for each of us is a peculiar being – an individual treading his own path. Yet, in spite of being different
and separate we all share a common life and maybe that is one of the reasons we sometimes need to peep
behind the drawn curtains of other people’s lives. Life demands that we commit ourselves emotionally,
spiritually and intellectually to an unknown future without any knowledge of the detail or the conclusion of our
particular drama.

Notwithstanding different events and circumstances, my story is your story because we share a common life
and whatever takes place in my life may also take place in yours and what happened to you may also
happen to me.

In the year 1624 John Donne immortalised these famous words in his “Devotions Upon Emergent
Occasions”:

“No man is an island, entire of itself;
Every man is a piece of the continent, a part of the main;
If a clod be washed away by the sea Europe is the less.
Any man’s death diminishes me, because I am involved in mankind.
And therefore never send to know for whom the bell tolls;
It tolls for thee.”

However, faith in God and a personal relationship with Jesus Christ has made me less reluctant to commit
my uncertain feet to an unknown road. Faith in God has removed much of the fear of the future the moment
I realised that God has not given anyone a letter of exemption in which it is stated that our children will not
commit suicide or die of cancer or whatever other disagreeable things happen daily in our lives or the lives of
our loved ones. I do not pretend to know why some have to go through the fires of sorrow and others live
long and uneventful lives. I do not have the answers to any of the painful questions of life, but I know a few
more things today and I see a few things differently than before.

When I took the first steps on the treadmill of torment, I fled to God in blind faith and committed myself to His
grace and to the tender comfort of the Holy Spirit, although in my shocked and confused state I felt more like
fleeing away from Him in anger and distrust. But I had no one else to turn to, and like a bird with a broken
wing, I just lay motionless in the hand of my Maker.

ii) THE REALITY OF PAIN AND LOSS

Death does not make appointments nor does it ask permission to act. On that sad day in the life of our
family, the 23rd August, 1989 our eldest son committed suicide. At the tender age of 15 years and 7 months
our loving, sensitive, tender-hearted son made this major decision without consulting with us, his parents.
And for the first time I realised that it was possible for our children to make such decisions and that we are
powerless to reverse the consequences, unable to prevent the devastation of such an act because we did
not know what was going on in his mind and therefore did not anticipate the possibility of such an event in
the least. We knew he was not feeling well. He was battling with a very bad flu and was already taking a
second course of antibiotics and not feeling any better and he was in the middle of important exams.

When you live a comparatively uncomplicated life and you are suddenly confronted with the awful reality of
death, and the fact that your child can do a thing like taking his own life, you feel completely unable to deal
with this truth. The blow of the reality of death is the worst but only the first of such blows that you have to
face in the immediate future. And you stand trembling and utterly bewildered in the presence of such an
unmerciful enemy. And a cloud hides the sun for a long, long time. 2

You feel numb with shock and helpless in the turmoil of a multitude of unpleasant emotions which overwhelm
you and you feel desolate and forsaken, unable to take control of your mind, unable to stop the swirling fury
and worst of all the throbbing of the pain where your beloved child was so cruelly uprooted. No words can
ever describe the misery of such a loss. You pass through stages of grieving and you simply go on living
because you are still breathing and the yearning for your child pulls you apart with unbearable pain. You feel
out of touch with anything that used to be normal. And you are forced to face the fact that death is part of
life.

iii) DEALING WITH THE DEVASTATION

Fortunately, there comes a day when the numbness grows less and gradually you gain control of your
mental processes again and you realise you have not lost your mind. Taking inventory though, you become
aware that you are battle-scared and weary. Your self-image is badly affected. You feel so guilty and
personally responsible for what has happened, a failure as a parent and you do not know how to deal with
these destructive feelings. The human part of me felt rejected. I rebelled and responded with anger as if my
entire worth and self-esteem revolved around my child’s well being. Yet, in spite of the turmoil and
perplexity, deep down, in the middle of the storm there was peace – I still depended on God. When people
comforted me and I saw their tears and anguish on my behalf, I consoled them instead and though it was
impossible for me to pray coherently at that stage the wonderful words of comfort in the Word of God that
was hidden in my heart and in my spirit started flowing out in spite of my brokenness. Suddenly I started
remembering the wonderful words of comfort and I knew that I was not alone, nor was I forsaken. Especially
the words in Isaiah 43:2 and further was of great comfort to me where it says: “When you pass through the
waters I will be with you and when you pass through the rivers they will not sweep over you; when you walk
through the fire you will not be burned … because I love you … Do not be afraid for I am with you…” I
realise today that the support of an everlasting arm was already firmly beneath me and the healing power of
heaven was already at work to sustain me in the bitter pain of the crucible.

iv) THE MIRACLE OF HEALING

I realised that, in a certain sense, I would have to rebuild my personality and I had to decide on what basis to
do that. I have seen people who, after a similar loss, lived out of their grief with such fear of the future and
with so much insecurity and I have seen them harm or destroy the relationships that ought to have been their
support systems in the healing process.

To prevent this I have had to make a couple of tough decisions and come to grips with a few very unpleasant
truths. I watched other people who had suffered loss and decided that I would rather not cling to my grief
and live in perpetual sadness.

Bruce Thompson once said: “Sadness relates to an unresolved love-deficit in your life and you can go on
wearing a garment of mourning and this becomes a tremendous handicap. You can be overwhelmed and
overcome by a spirit of mourning. This is born of a deep-seated feeling of rejection.”

One of the very basic necessities in life is that which we experience in giving and receiving love and much of
our health and well being revolves around this fact. But if in your confusion you fail to realise that the child
you have lost was not the sole recipient of all your love and that he was not the only source of love in your
life, your loved ones who are still with you may feel rejected and come to the conclusion, however
mistakenly, that you loved only that child and that they are of no significance to you whatsoever.

But I thank God this tragedy has brought our family closer together and Lemmer, my husband and Lourens,
my other son held me in their arms and allowed me to weep and we comforted each other without hiding our
feelings. And I am so grateful that I can stand here today as a living testimony to the sustaining grace of
God and that I am able to say that I firmly believe God always answers our prayers in the best way. Not just
sometimes, but always. Not always in the way we have in mind, but according to what He has in mind for us.
And in spite of the devastation, it was possible for us to build a new life on the basis of our stronger faith in
God and to put the pain behind us. Although the memory of that day will always be with us, the sweetness
of the beautiful memories of our son is stronger.

We decided not to live out of the destruction and to redefine many of our naive ideas and vague beliefs and
face the fact that Christians are not unwoundable or exempt from negative emotions and their effects. We
had to take a firm decision to resolutely let go of the pain of the past and deliberately commit ourselves to be
whole and well again and to find a place in the sunshine once more. I had to decide not to be bitter because
I realised if I let bitterness pull me into a hole, I would pull my loved ones with me. And I decided to go on
serving God and to love Him with all my heart and trust Him completely in spite of having received no
answers to my questions and that was one of the best decisions I have ever made. 3

God bless you!

THE IMPLICATIONS OF EMOTIONAL PAIN FOR THE DYING PATIENT & FAMILY

By Gudrun Thiele

Tel: (012) 991 2176 or 083 494 5593

i) Introduction
ii) What is Different and Unique about Issues of Death and Dying?
iii) The Needs of the Dying Patient
iv) The Needs of the Caregiver
v) Caring for Oneself
vi) Bibliography

i) INTRODUCTION

After many years in the closet, death has emerged as a part of our life, and over the past thirty years or so, a
vast array of books, seminars and personal accounts devoted to the process of dying have been produced.

Elisabeth Kübler Ross, a pioneer in the work with death and dying is a familiar name to all of you, as is her
“stage theory”. While conceding that the stages of denial, anger, bargaining, depression and acceptance are
applicable in work with the dying, and that “stage theory” is a valuable guide for professionals in this field, it
is also necessary to note its limitations, and to take a look at the emotional implications of the dying process
in a broader context.

ii) WHAT IS DIFFERENT AND UNIQUE ABOUT ISSUES OF DEATH AND DYING?

  • There is no “proper” way to die.

People cope with death in a variety of ways. They move and fluctuate between stages of dying and their
ability to cope with reality at any given time varies. Dying patients demonstrate a wide variety of emotions
which ebb and flow as the need to face conflict and crises arises. The task then, is to determine the level of
stress and crisis of a patient at a given time, to respond to the emotions generated by that issue and to
respond to where the patient is in his/her living/dying process. We do not make the patient respond to our
idealized concept of dying, but we respond to that person’s actual unique dying experience.

Sheila Cassidy, in “The Latest Journey”, puts it this way: “The spiritual (emotional) accompaniment of the
dying is a delicate task which requires that we find out where each individual patient is both emotionally and
spiritually, and work with them in that “place”.

  •  The dying person sets the pace

Crisis intervention is usually geared towards the development of insight or self-knowledge. In work with the
dying on the other hand the emphasis is rather on process and presence. The patient sets the pace and
different individuals get in touch with their illness at various points of truth. The therapist waits for these
openings and recognizes that any one of these openings is equally good, as long as it is comfortable for that
person. The process must be flexible and move with the dying person’s changes of needs, shifts of moods,
efforts to control, detours into denial and so on. It is a process which continues until it is interrupted by
death. Perhaps it would be appropriate to include at this point the term “patient centred communication”, of
which the most vital ingredient is receptive silent caring, and listening well.

Professionals give advice – pilgrims share wisdom! The greatest gift you can give another is your undivided
attention!

  •  The goals are different

The focus is on the person because time is finite. The emotional comfort of the person is paramount against
too much emphasis on “death work”. The therapist needs to be able to tolerate incompleteness and lack of
closure, because not all persons die on psychological target and in a sense, every life is incomplete. The
reality is that people die either too soon or too late and leave behind them loose threads and unfinished
business.

The goal of resolving life’s problems may be an unattainable one, the goal of an “appropriate” death more
realistic. This means giving the patient a choice as to how he/she wishes to manage her death, and enough
space to resolve whatever is consistent with this choice.

  •  Denial will take place

Denial is not a “stage” of dying – it surfaces now and again all through the dying process. It is only human to
blot out thoughts of death and put them on a sidetrack from time to time. This explains for instance, why a
dying patient could suddenly start talking about taking a trip and return just as suddenly to the reality of the
present moment.

  •  The rules are different

Transference and counter-transference may take place. Working intensively with a dying person is different
from almost any other human encounter. The stark reality is that the patient will die soon, so that ethically
speaking, the therapist can afford quickly to become a key significant figure in the dying person’s life. In
other words, an intensity of emotional interaction is allowed which could be regarded as “unprofessional” in
other counselling situations. In work with the dying a close intensive relationship between the therapist and
patient can be sustaining for the patient.

The flip side of intensive involvement with a patient however is that the therapist is made vulnerable and
when the patient dies the therapist is bereaved. Counter-transference needs to be carefully watched and
support must be available. It is vitally important for therapists and caregivers to retain and make full use of
their individual support systems such as loved ones, good friends, a congenial work situation, peer
consultants and occasional vacations from the dying scenario.

iii) THE NEEDS OF THE DYING PATIENT

  • Open and honest communication

Openness with dying people is not a simple issue, and it is difficult to determine hard and fast rules about
honesty and clarity. It is however, difficult to discuss plans with family members, comfort each other and
mobilise resources unless the truth is shared. Clear communication is therefore a necessity which patients
and family members should be able to use constructively.

There is a difference of opinion on whether those who are dying should be told the whole truth, and often the
point is raised that to know the truth might destroy the patient’s hope. The trend nowadays however is to tell
patients what they want to know. Cicely Saunders, founder of the hospice movement clarified the dilemma
by advocating this approach: The real question is not “what do you tell your clients?” but rather “what do you
let your clients tell you?” In other words, how sensitive are we as professionals to understanding how much
the client is ready and able to handle?

The freedom of choosing one’s own style of living and dying should be respected.

Communication of the truth should always be with the good of the patient in mind and to maintaining respect
for the authentic wishes of the terminally ill patient.

  • The need to confront the unknown

The basic anxiety in death and dying issues is that death is unfamiliar and cannot be anticipated. There is
fear of ceasing to be, personality disintegration or the death of one’s identity. There are a host of losses
which the dying person may experience which affect not only his identity as a person, but also his familiar
way of life, his role inside and outside the family, his total existence. Dealing with these losses in a
meaningful way calls for sensitive intensive therapeutic involvement.

Loss of control
Loss of independence
Loss of productivity
Loss of security
Loss of various types of psychological, physical and cognitive abilities
Loss of predictability & consistency
Loss of experiences
Loss of future existence
Loss of pleasure
Loss of the ability to complete plans and projects
Loss of dreams and hopes for the future
Loss of significant others
Loss of familiar environment and possessions
Loss of self and identity 3
Loss of meaning

• The need to deal with powerful emotions

Dying is dealing with anxiety (deep fears)
Dying is feeling angry
Dying is feeling guilty
Dying is losing control
Dying is isolation and separation
Dying is grieving losses
Dying is feeling hopeless

NB: Hope is crucial in maintaining some sort of meaning in the dying process – hope can shift – hope to
retain control, dignity and self-esteem paramount.

  • The need to preserve and restore family and significant relationships

There is an interaction among those who are dying, family members and providers that is influenced by a
combination of various factors: socio-cultural and organizational factors, the perspectives of the patients and
the providers on appropriate care, and the family expectations and experiences.

Maintaining a functional equilibrium is a major task for the family unit and one, which has to be dealt with
throughout the dying person’s illness.

There are coping tasks, which the family must undertake in the face of terminal illness some of which may
be:

  • Dealing with fears and disruptive emotions.
  • Establishing relationships with the various caregivers involved.
  • Coping with the needs of the dying person.
  • Negotiating relationships and support systems outside the family.
  • NB Realigning and reassigning power, responsibilities and roles in the family systems’ emotional struggle to re-establish stability.

The successful coping family is able to achieve a balance between the needs of the patient and the
needs of the family.

The family who cope well also know how to handle issues of guilt in a realistic way, and to take care of the
needs of each family member.

When the cancer progresses families confront four major issues, viz.:

  • Communicating concerns about death to the immediate family members.
  • Providing care and support.
  • Dealing with personal feelings of loss and separation.
  • Acquiring appropriate professional support.

There are ten major areas which cancer patients and their families have identified as important:

  • Acquiring accurate and current information on the disease process and treatment plan.
  • Accepting and readjusting to changes in body image and self-concept.
  • Learning to express feelings about having the disease.
  • Readjusting major responsibilities and goals in the face of an uncertain future.
  • Determining the impact which the illness will have on the financial status of the family.
  • Reinforcing basic life philosophy and spiritual needs.
  • Establishing and maintaining a sense of hope.
  • Developing meaningful interpersonal relationships with the family, friends and medical personnel.
  • Finding out where appropriate resources are located.
  • Recognizing myths and untruths about the disease and its proposed treatments.

iv) THE NEEDS OF THE CAREGIVER

  • Work with the dying cannot be conducted as a solo operation. “No man is an island” according to John Donne. This phrase underlines the necessity for multi-disciplinary teams and teamwork. In “real life” physical, financial and emotional problems are interlocked so that it takes caregivers from a number of different disciplines to resolve them. When professionals are prepared to acknowledge each other’s differing expertise, “holistic” care can be delivered.
  • Caregivers are vulnerable – and need the help of co-therapists to cope and hold their balance. Sheila Cassidy in her latest book “The Loneliest Journey” put it this way: “We are all like Russian dolls – people within people, and only the wounded can heal”.
  • Caregivers are people who are willing to listen to ill persons and to respond to their individual experiences. Caring has nothing to do with categories; it shows the person that his/her life is valued because it recognizes the uniqueness of that person’s experience.
  • Caregivers are people who are able to “hold” emotions without expecting change. They know how to “stay with” and to comfort.
  • Caregivers are people who are able to be in the experience of pain and conflict without blocking the pain.
  • Caregivers are people who are able to resolve their own fears about death, dying and mortality.
  • Caregivers are people who are able to appreciate a wide diversity of cultural and religious beliefs and to work within the given frame of reference of the patient. Care is inseparable from understanding, and like understanding it must be in harmony.
  • Listening to another, we hear ourselves, caring for one another we care for ourselves as well, or we end in burnout and frustration. We are all healers of each other. We are a gift, each of us to the other, we human beings.

v) CARING FOR ONESELF

Be gentle with yourself.

  •  Know your needs. You have only a limited amount of emotional energy, and you cannot be
  • all things to all people. Avoid feeling that you have to cope.
  • Dealing with people facing death is difficult and emotionally draining, and evokes emotions
  • that are painful.
  •  I cannot manage another’s grief, I cannot remove his pain. I can only be a caring presence.
  • Take “time out”, becoming involved in activities which nurture you – gardening, socializing, enjoying a funny story or movie, spending a weekend away.
  • Keep a journal – write down thoughts, feelings, dreams, hopes and aspirations.
  • Prayer, deepening your relationship with God.
  • Continue contact with supportive friends.
  • Make yourself beautiful – hairdo, manicure.  Look to your own health – diet, exercise and relaxation.
  • Accept and flow with your feelings and needs, and let go of emotions if necessary.
  • Don’t hesitate to acquire professional counselling if you need special support.
  • Above all, respect yourself and know that you are doing your very best.
  •  Accept that you have been assigned a special role and that your unique qualities will bring  “healing” and growth to others.

vi) BIBLIOGRAPHY

Towards Death with Dignity – Sylvia Poss
Psychosocial Needs of the Dying Patient – Charles Garfield
The Loneliest Journey – Sheila Cassidy
Sharing the Darkness – Sheila Cassidy
Cancer and Faith – Reflections on Living with a Terminal Illness – J Carmody
Personal notes and summaries