Anticipatory Grief: Information for Patients and Families
Anticipatory grief acknowledges the many losses, changes and demands that patients and families encounter during the course of a terminal illness. This article provides information about some of the struggles and stresses that may occur and ideas for dealing with them. Sometimes it is enough to know that what is happening is normal or to be expected. Other times, when patients and family members misunderstand what is happening for each other, more information and helpful suggestions can increase their tolerance and support for one another.
A Patient’s Perspective
As someone deals with diagnosis, life-threatening illness and death, they grieve the many losses they face; past, present and future. In their grief they will experience a wide range of thoughts, feelings and responses in the struggle to come to terms with this reality. Due to the intensity of these reactions, people often feel frightened and overwhelmed. This is quite normal. It often helps to know what to expect and that these reactions are a necessary part of grief.
As people face changes in the roles and responsibilities they fulfill, this can result in feelings of self-consciousness and low self-esteem. Former activities and interests may no longer be available to them. Some people feel indifferent to social contact and withdraw; others need company, but find it difficult to ask. People around them may have unrealistic expectations about both their physical capabilities and emotional status.
Adjusting to the continual changes in daily activities and the loss of their former lifestyle will likely increase the person's fatigue and sap already low levels of energy. It is important for people to pace themselves and save their energy for the activities that are most important to them. The loss of independence, both physical and personal, is difficult.
Patients will experience a wide variety of feelings which may occur as acute upsurges of emotion. Anger, sadness, depression, and guilt are common and natural to feel. They may be quite irritable, with low frustration and tolerance levels; current grief may resurrect old feelings, issues, or unresolved conflicts. They may experience anxiety or fear about self and others, as well as concern for the future well-being of the family.
The stresses that people experience at this time may interfere with how well their mind functions; both concentration and memory can be poor and decision-making becomes difficult. At times people have a sense of unreality or of going crazy. Also, it is natural to fluctuate between denial and acceptance of the situation. They can be preoccupied with thoughts of how they will die, or thoughts about being a burden to the family.
Attitude toward and perception of the changes that are occurring will affect how well people are able to cope. Hoping for miracles may change to looking for the hope in each day. People question their beliefs, search for the meaning in life or pursue spiritual peace. Mourning for hopes, dreams and unfulfilled expectations is a natural and important part of the grief process .
How to Help
A major loss experienced by patients and families alike during this time is the loss of existing relationships. As the illness progresses and changes in condition occur, it can become increasingly difficult to maintain a mutually satisfying relationship. Patients may be withdrawing from those around them or may not have the energy to reach out. Families may be so exhausted by their own grief and the many tasks of care giving that they have little left to offer.
The following ideas are to help family and friends think about ways of supporting and communicating with the person who is ill.
Touch can be one of the most comforting means of communication. A squeeze of the hand or an embrace can sometimes show love and caring more easily than words.
Smile & Laugh
Continue to enjoy humorous incidents and stories. Illness should not put a ban on laughter.
Be Comfortable with Silence
Understanding, caring and love often need no words. Silence can be as supportive as conversation.
When the patient is doing poorly, don't deny it. Everyone, sick or healthy, should be treated with honesty and not deceit.
Know Your Limits
It is impossible to solve all the problems or have all the answers; in fact, there may be no solution. Accept limitations and offer only what is possible. Ask for help!
Accept and Acknowledge Feelings Expressed
Don't pretend that everything is alright; be sensitive to changing feelings. The patient may need to express their emotions and some encouragement may be helpful! Questions such as "What are you feeling?" or "Tell me what is happening to you" may be helpful.
Spend Time Together
Talking, listening to music, watching television and playing cards or games can help fill lonely or frightening hours with shared companionship.
Respect their privacy, confidentiality and their opinion.
Communicate in New Ways
Sometimes people talk about their dying in symbolic ways: e.g. going on a trip, meeting with family who have already died, seeing visions. Rather than treating this as confusion, listen closely and encourage the person to discuss their feelings.
Coping with Serious Illness
As patients and families struggle to deal with life-threatening illness, they will each find their own way to respond to the circumstances that arise. The following guide may help you recognize and understand some of the different responses that may occur. However, this does not mean that everyone will experience all of the following in the same way or order. In fact, these reactions often overlap or run together as people try to deal with their situation.
Patient Responses May Include
The patient denies that 'this' is really happening. "It's not true; it's a mistake." The truth can be too painful to handle all at once. While the person may start by denying or being in shock, the information will gradually be taken in at a rate which suits the individual.
The patient may experience deep anger at fate, asking "Why me?"; may lash out at anything and anyone.
The patient starts to make deals in an attempt to influence fate. Promises of good or changed behaviour are made in hopes of reversing the diagnosis or gaining
more time. Often the person will keep the bargain a secret.
The patient may cry a lot and be very sad; needing to express sorrow. Attempts to cheer the person up are unhelpful and may alienate him or her.
The patient has acknowledged fears and concerns to the point where they are no longer overwhelming. The person may gradually withdraw from their present world and be reluctant to maintain connections.
Family Responses May include
Family members may feel as if they are just going through the motions of everyday life. They often try to protect the patient by not talking about the illness or the future.
Family may feel angry at the diagnosis, the healthcare workers or the thought of the person dying and leaving them alone.
Family may also make bargains in seeking a miracle. They may feel guilty for being healthy and offer more care than is realistic, exhausting themselves. It may be hard for them to ask for help.
Family members may wish they had treated the patient better or fear that they have contributed to their illness. The unknowns of the future are overwhelming and self care suffers.
Family is able to be present while the patient is withdrawing. They may have conflicting feelings: e.g. wanting the patient's dying process to end, while not wanting a future without them.
Patients and family members are often in different emotional states at different times, increasing the stress for everyone. Family needs to respect the patient's way of coping and find ways to support him or her. It is important for family to know their own limits and to ask for help or support.
The Family’s Perspective
During this time, family and other caregivers will find that, they too, have a range of reactions and emotions. The many thoughts and feelings that arise may be intense and overwhelming and may recur with changes in the patient's condition and care needs. Each member of the family will respond in their own way and it may help to know some of the typical healthy reactions to such a stressful time.
As changes occur
Helplessness and hopelessness may occur with increases in care needs.
Shock and numbness can accompany any sudden change in condition.
Yearning is for things to be the way they were before.
Loneliness increases as family roles change and the patient becomes more dependent on care.
Edginess and irritability may arise in your relationships with other people.
Fatigue is sometimes experienced as apathy or listlessness.
As emotions arise
Sadness is the most common feeling and may be expressed by crying and sighing.
Anger is common and is usually caused by:
Tasks for Families of Dying Patients
Caring for a terminally ill family member can be confusing and difficult, trying to balance the patient's needs with those of the family. On the one hand you are attending to the care of the ill family member and maintaining involvement with them. On the other hand you are grieving your own losses and beginning to prepare for life after the person has died. There is never enough time or energy to attend to these opposing needs.
The steps taken to cope with all of this are called “tasks” and they are part of an ongoing process. Family will likely find that they are engaged in all of these tasks to varying degrees at the same time. There is no set procedure or need for completion; different ones will be more important at different times. Looking at each of these separately will help you to understand more exactly the demands of the situation and help family members make the best use of time, energy and resources to deal with them.
Fluctuating from denial to acceptance of the illness and death
Some denial of reality is healthy and necessary in order to function. It allows information to be taken in at a more tolerable pace, and gives family a break from the emotional stress of a situation. Acceptance of what is happening will not necessarily bring peace.
Establishing a relationship with health professionals
It may be necessary to learn how to be constructively assertive, as well as find a way to deal with frustration. Family and caregiver conferences can help to reduce anxiety by opening communication lines and providing direct information. It may help to write concerns down before meeting with caregivers .
Meeting the needs of the dying person
As their illness progresses, the patient's physical and emotional needs will change. The task here is to help in the best way possible without taking away the person's control or independence. Don't make assumptions about what they need or feel; ask before you act.
Maintaining a functional family unit
When someone is sick, it means that everyone in the family must take on new roles and responsibilities. At the same time it is really important to maintain some normal family routines, as this provides some security in the midst of chaos.
Living with the emotions of grief
During this time both patient and family experience intense swings in emotion. Having information about these feelings and being aware of reactions will help everyone begin to cope. It is important for family to let each other know how they are feeling and what they need. There may also be things that people prefer to discuss with someone outside the family unit.
Dealing with people outside the family
There may be little energy for outside relationships and commitments at this time. Often, other people's reactions may be unpredictable and difficult. Some friends or helpers may be too involved or too cheerful; others may avoid talking about the illness or even visiting the person who is ill. Many people don't understand what family members are going through and it is hard not to resent others' stability and good fortune.
Anticipating the family's new reality after the death
It is impossible to imagine the future. However, estate planning, dealing with different kinds of unfinished business and building in supports are things that can help family members to prepare. The important thing is to do the best you can.
Finding appropriate hope
What everyone hopes for throughout this time will change. Long term plans need to be replaced by short term plans; treatment aimed at cure may be given up for that which relieves symptoms. Accepting the goal of comfort rather than of cure is a step toward acceptance of the inevitability of death.
Allowing the dying person to be at risk
Refusal to take medications or accept personal help may be very difficult to deal with, but it is important to recognize the patient's right to choose activities that may put him or her at risk. However, these choices should not put family members at risk.
Making decisions for the dying person
There may come a time when the patient is unable to make decisions for him or herself. Prior discussions, an advance directive or living will and knowledge about the person will help you respect and represent his or her best interests.
When caring for someone else, it is hard to have energy for oneself and to see this as important. Building in time for self care is crucial, e.g. sleep, nutrition, exercise, relaxation. Recognize that all members of the family have needs… physically, emotionally and spiritually. Also, family strength and good health makes it possible for them to support and care for the person who is ill.