What will happen to me emotionally?

Elisabeth Kubler-Ross, one of the world's foremost experts on death and dying, described the emotions of dealing with death as a progression of denial, anger, bargaining, depression, and acceptance. Her work deserves mention as it has inspired what we understand now more thoroughly as the journey we all travel in coping with illness and death.
 

Denial

There is a television commercial that portrays a woman receiving news that she has cancer. She is sitting across the desk from her specialist or GP, and as soon as the word ‘cancer’ is spoken, the sound track becomes muffled and the images blur. Everything that is said or happens in the appointment after that seems to be in a sensory and mental fog.

Your first emotional response in dealing with a life-threatening disease may have occurred when a symptom appeared – a lump, bleeding, pain, or even tiredness. You might have kept it to yourself, hoping it would go away, or just making sure you weren’t imagining things. You might have been afraid, or decided not to talk about it. If the symptom is never spoken about, then it can’t be real, can it?

Some people try to deny what is happening even once a diagnosis is confirmed. A world can change in an instant, and one needs time to sort that out, therefore the ‘fog’ in the TV scenario.

In the hope that eventually, everything will be okay, sometimes we; ask for a second medical opinion, wonder whether tests are mixed up with someone else’s, or minimize the significance of serious illness in reaction to our diagnosis of serious illness. Denial is self-protective and allows you to absorb, a little bit at a time, what illness might mean to you. It also fades over time, and as long as it does not stop you from getting the medical help you need, it is adaptive and normal.
 

Anger

Anger or resentment is related to a sense of injustice. Some people become ill when they have no risk factors for their illness or they have lived well and responsibly, yet develop a life-threatening illness. Carefully laid plans must be abandoned, dreams fizzle. Sometimes anger is directed at the self, those close to you, people who are healthy, or at God, or a higher power.

Anger should be discussed with a health care professional, especially if you are so angry that you can’t communicate your health care needs or symptoms. Often you can specify an underlying cause of your anger: loss of control, fear of being seen to be weak, loss of work, opportunity or family life. The financial strain that illness can place upon families, especially if you do not have employment insurance benefits, can certainly be a cause of anger and anxiety. Acknowledging and discussing these underlying causes of anger is critical to solving those problems which can be solved and moving past those that can’t.
 

Anxiety

Dying people have enough to worry about without being anxious about things they should not be anxious about. Lack of information and control are prime causes of anxiety and they are also unnecessary. Knowledge of what to expect related to your disease as well as the treatment and care gives you power and choice…and lessens anxiety. Your doctor and professional caregivers have the answers – ask the questions!

Control, even in the form of having a say on smaller issues, such as when visitors should be allowed, relives the anxiety of powerlessness. You can decide all the important issues; the important thing is to anticipate them and be ready to make decisions.
 

Fear of Abandonment

Sometimes patients fear that health care providers or loved ones will abandon them; that people will stop coming to see you when they see changes in your body, such as loss of weight or loss of strength that may occur as disease progresses, or that health care providers will decide to stop treatments that relieve your suffering.

Palliative care professionals have chosen their field because they are committed to help terminal patients live the very best life they can. They have a wealth of experience in managing pain and in preserving the dignity of the patient. They will never abandon you. “You are what they signed up for.”

Friends and family will share the same state of shock that you had, and at times will, struggle to react “appropriately”. Elsewhere on this site [link], we portray what friends and family can expect to experience and how they can best cope. In site of “inexperience”, we find people do not abandon their loved ones. In fact, the larger problem is making sure you both get needed respite and breaks from each other from time to time.

Hope

Many kinds of palliative treatment can bring about hope, even if not a cure. It is possible to improve quality of life. Often, increased hope is related to finding an increased sense of meaning or purpose in life. Staying connected to things that provide a sense of meaning can be a powerful way of maintaining hope throughout the course of illness.
 

Attitude

Life always has purpose, and even if you’re very ill, you still have value.

With good palliative care, one can choose how to die. The following excerpt from the experience of the husband of a palliative care patient is an example of how one patient and her husband lived to the fullest, right to the end.

[link to appropriate segment in Bill Field video]

When you have accepted that you are not in control of your disease, you can focus on the positive things that provide meaning each day visiting family and friends, reviewing photographs or retelling stories, giving or taking part in projects that have meaning to you, such as writing family histories or a journal.

Death Can Not Touch Your Essence

The challenge is to locate a part of yourself that feels untouched by illness: your character, your personality as an example. If, in spite of illness, you feel that the essence of who you are remains intact and untouchable, you will be comforted and you will understand that life still has meaning. A mother who until almost the very moment of her death is still able to preside over her family with a wag of the finger from her bed has kept her sense of self, even in dying.
 

When Death is Near

As death approaches, many people find purpose in their lives by reaffirming their values in an open manner. Not everyone wants to talk as death nears, and some people withdraw. Silence does not have to be perceived as negative; it can be calm or even tranquil. Some people, through their dying, seem to, or seem to want to teach people who are close to them about how to face the end of life. The attitudes that we have about dying are largely shaped by our own witnessed death experiences and in recognizing this, help shape others’ attitudes toward coming to the end of life. Some patients find dignity at the end of life through the knowledge that they are helping others.

Spirituality, Grief

Death confronts us with an ultimate loss and the fundamental unknowable. Great religions have examined these issues for thousands of years. Death is universal but every one is unique. There are no rules, no easy protocols. You must develop your own and in doing so, you will teach those around you and help them prepare for their turn.

From our own experience, we can say that clergy of all great religions are used to dealing with death and are almost invariably willing to help you through it should you wish it. As well, the connection death can create between all those involved has an intensely spiritual element.