Saying Goodbye- Coping with a Loved One’s Terminal Illness
Lingering terminal illnesses are becoming more common than sudden deaths, and this process has many stages. It’s important to point out that the grieving process is borne by families, not just individuals.
The long goodbye
Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Consider, for example, that two-thirds of those who are diagnosed with cancer currently have a five-year survival rate.
The result of all of this is that death has become less and less a sudden and unexpected event. In its place has come a process that begins with a life-threatening diagnosis, proceeds through a period of treatment (or treatments), and ends eventually in death. This process means that both the terminally ill individual and the family are increasingly confronted with the need to “live with death” for a prolonged period of time.
Because the nature of death and dying has changed so dramatically, the way we grieve has also changed. The new grief differs from traditional grief in significant ways, not the least of which is that it includes the terminally ill person. In addition, what has increasingly become a protracted process as opposed to an event not only leaves individuals to mourn but typically draws in the entire family of the dying person for months or even for years. This process has the potential to alter lifestyles and force families to confront issues that once were dealt with only after the death of the loved one. It can easily evoke issues from the past that were never fully addressed or resolved.
Grief is a family matter
The fact that grief today is a family matter as much as it is an individual one. What is needed is a new template—one that is relevant to families and their experience. That is what we present here. This model is intended to be a road map that you and your family can turn to as you navigate your way through the current realities of death and dying. And by the way, when we use the word family, we include not only blood relations but all those who have a significant connection to the person who carries the diagnosis.
The challenges that families must face when confronted with a terminal diagnosis of a loved one are complex. They include evolving new structures and dynamics as the person they love slowly slips away. It means learning how to cope with setbacks and deterioration as well as periods of seeming remission. It means dealing with the complexities of extended grief, which can wear individuals down and lead at times to ambivalence or the unpleasant feeling we get when we find ourselves wishing that the process would end. It means talking with a dying loved one about mortality and other issues that do not arise when death strikes suddenly and unexpectedly. It means learning to make space for extended grief in lifestyles that are typically busier than those of earlier generations.
Perhaps most important, the new grief involves confronting family issues that may have been dormant but unresolved for many years. These issues typically re-emerge as families move past their initial reactions to a terminal diagnosis and are forced to interact and work together through a process of extended grief. Finally, it means moving forward together as a stronger family after a loved one passes.
Without understanding and without guidance in each of these areas, family members who are forced by circumstances to cope with prolonged grief are vulnerable to serious psychological consequences, including depression, guilt, and debilitating anxiety. These circumstances can even lead to physical illness. Whole families are vulnerable to rupture as a result of a resurgence of unresolved issues that are unearthed as a result of a prolonged terminal illness in a loved one. Even loving couples may find their relationships in jeopardy as a consequence of unwanted lifestyle changes. What families need now—and will need in the future—is guidance for how to anticipate and deal with such issues.
Stage 1: Crisis
The diagnosis of a terminal illness or a potentially terminal illness creates a crisis for the family. It disrupts the family’s equilibrium, just as a rock thrown into the middle of a still pond disrupts its equilibrium. Factors that affect how you may react at this stage include:
The history of as well as the current status of your relationship with the ill family member
Whether the loved one is a spouse, a parent or a child.
What your and the patient’s past (and current) roles in the family are.
Anxiety is the most common initial reaction to the news that a family member is terminally ill. However, if your relationship with the terminal family member has been strained or alienated, you may also find yourself feeling guilty, resentful, or angry.
If the terminally ill person is a child or young adult, anger at the seeming injustice of early death may be the dominant emotion shared by family members at this initial stage.
At this first stage of the new grief, all adult family members benefit from guidance issues such as what to expect in terms of their own emotional reactions, whom to seek support from, whom to share memories and emotions, with, and what to expect when they meet with the dying loved one and other family members.
Stage 2: Unity
The reality of impending death has the effect of pressing family members to put even longstanding complaints or grudges on hold as they pull together to move into this second stage of grieving. This may be no problem for family members who have no conflicted feelings or unresolved issues of their own with the loved one, such as favored children.
On the other hand, if you feel that you were always a less favoured child (or the family scapegoat), you should not be surprised if you experience a complex combination of emotions even as you strive to be a good team member.
In Stage 2, the needs of the dying become paramount. A major issue for all family members in Stage 2 is how they will define their roles with respect to one another and the terminally ill member. If they do not give some thought to this—a situation that is quite common—they may quickly find themselves having regressed into roles they played years earlier, as children and adolescents, but that they would not consciously choose now.
In this second stage of the grief process the family has much work to do, including:
Choosing and working with a medical team
Navigating the social services maze
Pursuing and qualifying for entitlements
Ensuring that critical legal work (wills, living wills, and so on) is completed
How the family organizes itself so as to complete these tasks can have powerful psychological and effects on each member, depending on how comfortable each feels with the role he or she is playing.
Stage 3: Upheaval
The family will eventually enter this third stage of grieving if the process of dying goes on for some time, which it typically does today. At this point, the unity that characterizes Stage 2 begins to wear thin as the lifestyles of all involved, whether they recognize it or not, gradually undergo some significant changes. Whereas thoughts and feelings about these changes may have heretofore been put on the back burner, they can no longer be suppressed and begin to leak out. One such feeling is ambivalence, meaning mixed feelings that many people experience when the process of dying evolves into a protracted one in which the loved one’s overall quality of life slowly deteriorates.
Emotions such as guilt, anger, and resentment are likely to emerge in Stage 3. At this stage the most important issue becomes being able to communicate honestly with other family members and with trusted loved ones. Suppressing thoughts and feelings about such upheavals can lead to strained relationships and eventually can cause the entire family to fall apart.
Stage 4: Resolution
As a family moves into the fourth stage of grief, the terminally ill loved one’s health is typically marked by gradual deterioration, punctuated perhaps by periods of stabilization or temporary improvement, and the effects of the prolonged grief process can and should no longer be ignored.
As they enter Stage 4, family members often find themselves having more memories—both good and bad—of past experiences which usually reflect relationships with the patient, these important memories are different, typically telling the story of how family members have viewed their place and role in the family. Often they point to unresolved issues. Some of these memories may evoke feelings of joy or nostalgia; others, however, may evoke anger, jealousy, or envy. Others still cause feelings of pride or, alternatively, of shame and embarrassment.
Stage 4 represents an unprecedented opportunity, if families only choose to seize it. It is an opportunity to resolve longstanding issues, heal wounds, and redefine one’s role in the family—indeed, to alter a family member’s very identity. Every family, as they say, has its share of skeletons in the closet. It is in this fourth stage of the grief process that the skeletons can be brought out of the closet, exposed to the light of the day, and cast forever into oblivion.
In particular, Stage 4 is a time when the following can be addressed and resolved:
Old rivalries and jealousies
These two issues stand in the way of families being able to bond together as strongly as they could and love one another unconditionally. Some family members, however, may react to this opportunity with anxiety instead of with enthusiasm. Rather than seizing the opportunity, they may try to avoid facing these issues. However, facing up to them offers the best opportunity for the family as a whole to move on together to a happier future. In this way the process of family grief can set the stage for growth and renewal for all involved.
Stage 5: Renewal
The final stage of grief actually begins with the funeral and the celebration of the life of the now-lost family member. This is a time of mixed emotions, to be sure, including both sadness and relief. If the family has successfully negotiated the previous four stages, however, this final stage also opens yet another door: to collective as well as personal renewal. It can be a celebration of life as much as it is a marking of a loss. It can be a time of creativity and planning, as the family decides, for example, how it will commemorate anniversaries and birthdays.
As much as Stage 5 is a time for remembrances, it is also a time for looking forward, to revitalized relationships and to new family traditions.
When you, a friend, or a loved one is diagnosed with a terminal illness, a process is begun: the process of preparing for death. For many, this time of preparation can be transformed into a rewarding, comforting ending, giving meaning to life, and dignity to death.
Things to Consider
Preparing for the practical issues.
Making contact with loved ones.
Contributing to the future.
Clearing the Decks
The first thing to do upon realizing death is in the imminent future, is to sweep away the practical considerations, making plans for death early, freeing yourself from later labor and stress. This is a time for finalizing a will, laying out a living will, describing your wishes for burial or memorial ceremonies, and making clear how you want your remains to be dealt with. Lining up doctors, hospice care, possible in-home nursing, sorting out issues of insurance – these are all things to deal with early, rather than later on in the progression of the disease.
Many people find the process freeing. In relieving themselves of tasks while they are still some distance from death, they ensure that as death approaches they can concentrate on love and relationships, and on transforming the process of death into as vital an element of life as any other precious, rare occurrence. Some people find having a counselor helps them, and in some cases their close family, deal with grief, loss, and regrets, restricting the amount of fear and anger that is involved in passing.
For those who approach their death with this attitude, the process can be a special, loving chance to make a final connection with family, friends, and associates, and even to make peace with old rivals and enemies. Guidance and help can be invaluable at this time: in a culture as uneasy with death as ours, the support and acceptance of a trained minister, counsellor or coach can help those involved with the dying accept their own role in the resolution of a life.
Death counseling, crisis counseling, and hospice counseling: these are specialized fields, and many of the individuals involved in this work are exceptional in their skill and their compassion. Working with and for the dying person and those who will survive, a counselor can serve as moderator, comforter, and source of support and information, leaving the family as free as the dying to accept the tides of feeling and reaction without constant pressure to cope with everyday realities.
Paying It Forward
For many, both among the dying and those who will mourn them, death is a time to invest in the future: to ensure one last gift to life, before death. Planning together the ways that gift will be given can provide structure, support, love, and ensure some form of hope that can carry the living –and perhaps even the dying – on past the moment of death, easing transition and enriching grief with grace and dignity.
Dealing with Illness
We are a culture no longer used to coping with illness. As a result, few are prepared for the physical stress of a terminal disease, or the many complications of caring for a terminally ill person. Getting support and advice from your medical providers, and further recommendations from experienced counselling staff, can ease the difficulty. Taking advantage of the practical knowledge of those who deal with illness regularly can help the patient and his immediate circle of friends and family cope with medications, physical limitations, and more.
To arrange for such help, early contact and secure arrangements with all levels of care provider are an excellent idea. Beginning early relationships with supporting care givers can be established long before the need is critical, and a caregiver can function as an accepted and comfortable member of the community gathered around the terminally ill as the disease progresses and greater support is needed.
All About Counselling
Talking to Children about Terminal Illness
A Most Difficult Decision
A recent article by Alex Ward that appeared in the Daily Mail (U.K.) described how the parents of a 12-year-old boy diagnosed with a terminal brain tumor opted to tell their son about the tumor, but not to disclose that it was terminal. Why? Because they wanted their son to be able to enjoy the year he had without the potentially paralyzing anxiety of knowing that his days were numbered. As a result, Adam went to school and joined family and friends in many “normal” activities as well as a few “special” ones such as taking a ride in a helicopter.
This raises the question: Should parents talk to children about terminal illness, and if so, what should they say?
The above story reminded me of one I heard when preparing to write Saying Goodbye: A Guide to Coping with a Loved One’s Terminal Illness. In the course of writing that book, my co-author, Dr. Barbara Okun, and I interviewed many people who themselves had gone through this experience to see what lessons might be learned that could be of help to others.
Here is the story as Debbie (a pseudonym) described it to me:
I lost my daughter, Rose, to leukaemia when Rose was just 6 years old. She was my first child. Losing Rose was the most painful experience of my life. For years afterward I worried that my other children—we had three more—would feel like they lived with a ghost, because she died before they were born. When people would ask me how many children I had I would respond by saying “I had four, but only three are living.” I would say this even when my other children were present. Yet I resisted talking to them about Rose or her illness. I think that only mothers who have lost children could possibly understand this kind of loss.
I am a pediatrician, and I experienced a tremendous amount of guilt and self-hatred over my inability to cure my daughter or even to help her sometimes when she was in pain. It was so hard to talk to her about her illness and what its repercussions might be. This was my child, she was my responsibility, but I could do nothing to save her. Tom and I ended up just telling her that she was very ill and that everyone was doing as much as they could to make her better. I believe that on some level Rose understood that she was dying, but she and I never actually had that conversation. I don’t know if it would have made a difference.
The story of Rose, along with the story of Adam, are instructive for us parents. First, one has to wonder whether both Adam and Rose knew, on some level, that they were not just very ill, but in fact dying. Debbie certainly thought so.
Second, we need to think about what would be gained by revealing a prognosis and life expectancy to our child. Were Debbie (and Adam’s parents) being cowardly, or were they being loving? Is it a disservice to children to withhold information, or do parents bear the burden of making such decisions all the time, weighing what they believe is in their child’s best interest? After all, do any of us know with any certainty how long our children will live?
Terminally Ill Parents
The issue of talking to children about terminal illness takes a different turn when it is not the child, but the parent who is terminally ill. When Elizabeth Edwards died at age 61 following a long battle with cancer, she left behind three young children. Her situation raises a different, but also important and challenging issue: When and how do we talk to children about terminal illness in a loved one?
Children today are likely to be exposed to the reality of a terminal diagnosis in a parent, other relative or friend from the time they enter school. As a consequence, more and more children will experience the prolonged process that Edwards’ children experienced as medical advances allow people diagnosed with a terminal or potentially terminal illness to live months and even years beyond what was once the norm.
Children are aware of “death” whether or not they have experienced it in their family. They know about it from fairy tales, television shows (including nature shows), the death of a pet, etc. And while their parents may not realize it, children are aware of many things, including terminal illness and death, through their classrooms. My 10-year-old daughter, for example, surprised me one day with this knowledge. When told that an older cousin had been diagnosed with leukemia, she replied, “I know about leukemia. A girl in my class has it.”
The ways in which children respond to terminal illness and death is shaped in large part by their social environment. Most prominent in this regard are parents, teachers and family. Children are very sensitive to the emotional moods and non-verbal communications of adults around them, and they sense when a parent is upset, even if the parent thinks that the child is unaware of what may be happening. So it makes sense to us to open communication rather than avoiding it.
Obviously, the level and type of discussion depends upon the child’s developmental stage and the unique characteristics of the child’s emotional, cognitive and social development. Research shows that it is helpful for families to talk about death and dying as a normal part of the life process when children are young in order to help them clarify their concepts of the life/death process. This may be even more important today, when children can expect have at least one close relative battle a terminal illness, for months or even years.
The most important things to establish this ongoing communication are as follows:
• That the child’s loved one is indeed very sick and will be undergoing treatment.
• Do not promise a child that their loved one will not die; rather, say that most people today do live a long life, that if they do get sick there are many more ways to help them and that you are taking care of yourself and others in the family to help achieve that.
• Explain how treatment will effect the loved one. Will there be a loss of hair, a loss of energy, a need to travel for treatment?
• Explain how the child’s life will be affected. Will routines change, will there be a change in caregivers?
• Finally, bring up these issues on a regular basis, as children may hesitate to ask questions if they sense that doing so will make you uncomfortable.
It is important for children of all ages to be given as much information as they are able to absorb—but not more than they can absorb. Parents will best be able to assess their individual child’s capacity to understand during these conversations if they are attuned to the child’s emotional responses and if they can share their own grieving with the child.
Joseph Nowinski PhD – Psychology Today