Anticipatory mourning may begin as soon as we become aware that death is a possibility. It can begin when a life-threatening illness is diagnosed, a terminal prognosis is given, we learn that there is no cure, and we realize that death is likely or inevitable.
Issues of grief and loss are inherent in the caregiving process, and grief is experienced by everyone involved—whether we are the person living with the illness or disability or a family member, partner, close friend, or caregiver who is intimately connected to and caring for our loved one. We are coping not only with our own feelings of grief and loss, but also with physical and emotional fatigue. At the same time, we may feel overwhelmed by the financial, legal, medical, and personal responsibilities that accompany caregiving.
In some ways, anticipatory mourning can feel harder than the grief we experience after death. When we are waiting for a death to occur, we may remain on constant alert, living in a prolonged state of emergency and uncertainty.
On the other hand, this period can offer valuable time for preparation. We and those close to us can begin to imagine life without the person who is dying and consider how we can use the time remaining to reflect, prepare for the future, and attend to unfinished business.
Suggestions for Coping
- Recognize that your initial reactions are normal. Shock, dismay, helplessness, and numbness are common, especially when the onset of illness is sudden or unexpected. Give yourself time to absorb this unwelcome news at a pace that is tolerable for you.
- Learn about the illness and current treatment options. Identify medical specialists and research centers studying the disease or condition, and locate local or online support groups.
- Reach out for help and community support. Assemble a network of family members, friends, clergy, neighbors, colleagues, health professionals, home-health and housekeeping services, faith communities, and volunteer organizations. Explore caregiving resources on the Web, such as those listed in Caregiving in Serious Illness: Suggested Resources.
- Learn about hospice and palliative care early. Contact your local hospice at any point to learn about available services. You do not have to wait until treatment aimed at curing the illness has ended before asking questions about hospice or palliative care. Learning about end-of-life care well in advance allows everyone involved to consider available options and make informed decisions. Hospice staff can work with the person's physician to determine whether and when hospice services are appropriate. You can also speak directly with your loved one's physician about a referral. To locate a program near you, see Find a Hospice or Palliative Care Program.
- Keep important information readily available. Have emergency telephone numbers and essential resources close at hand, including legal, insurance, medical, financial, and home-repair contacts.
- Identify what needs to be done—and find help doing it. Ask others to assist with errands, grocery shopping, household repairs and maintenance, transportation, housecleaning, prescription pick-ups, and other practical tasks.
- Follow the lead of the person who is dying. Each person experiences illness in a different way and has individual preferences about whether, when, and how openly to discuss the illness and impending death.
- Encourage, but do not force, open communication. Invite honest communication among caregivers, family members, friends, and the person who is dying, while respecting the fact that some people may not be ready or willing to talk about the reality of the illness or its probable course. People often come to terms with a terminal diagnosis gradually; confronting it all at once can feel overwhelming. Listen without judging, allowing others to express their thoughts and feelings without fear of criticism. At the same time, let others know how you are feeling and what you need.
- Make time for meaningful connection. This period of warmth, sharing, and togetherness is precious. Although communication can sometimes be frustrating or painful, this may be an important time to address unresolved issues and to say, do, and share what is especially intimate and meaningful in a positive, affirming, and encouraging way.
- Use alternative ways to communicate. When speaking openly feels too difficult, consider writing letters or making video or audio recordings. These can provide opportunities to express feelings, such as letters, video- or audiotapes.
- Follow the lead of the person who is dying. Each person experiences illness in a different way and has individual preferences about whether, when, and how openly to discuss the illness and impending death.
- Encourage, but do not force, open communication. Invite honest communication among caregivers, family members, friends, and the person who is dying, while respecting the fact that some people may not be ready or willing to talk about the reality of the illness or its probable course. People often come to terms with a terminal diagnosis gradually; confronting it all at once can feel overwhelming. Listen without judging, allowing others to express their thoughts and feelings without fear of criticism. At the same time, let others know how you are feeling and what you need.
- Make time for meaningful connection. This period of warmth, sharing, and togetherness is precious. Although communication can sometimes be frustrating or painful, this may be an important time to address unresolved issues and to say, do, and share what is especially intimate and meaningful in a positive, affirming, and encouraging way.
- Use alternative ways to communicate. When speaking openly feels too difficult, consider writing letters or making video or audio recordings. These can provide opportunities to express feelings and thoughts that are difficult to say aloud.
- Prepare for the family's future reality. Help the dying person, when appropriate, attend to important end-of-life matters, including a will, distribution of possessions, funeral or memorial plans, and the gathering and safekeeping of important medical, legal, financial, and family documents.
- Expect family roles to change. As illness progresses, responsibilities may shift. Tasks once handled by the dying person may need to be reassigned, requiring everyone to adjust. Maintaining familiar family routines when possible can provide a sense of security amid the disruption.
- Let some details go. Slow down and concentrate on what matters most. Not everything needs to be done perfectly. The emotions that seem to have taken over your life right now will not always feel this overwhelming.
- Practice good self-care. Pay attention to the family's needs for adequate rest, nutrition, exercise, recreation, respite, and fun. In your efforts to remain strong and care for the dying person, do not allow your own physical, emotional, and spiritual needs—or the needs of other family members, especially children—to become neglected. Keep a journal, seek individual counseling, or participate in an in-person or online caregiver support group.
- Draw on spiritual beliefs and practices, if they are meaningful to you. Prayer, meditation, reading, attending religious services, or simply listening to your inner voice may provide comfort, peace, and hope. It is also not unusual under these circumstances to feel angry at doctors, at the person who is dying, or even at God. If there are things you would rather discuss outside the family, consider talking with a pastoral counselor, spiritual advisor, or another trusted person who will listen without judgment.
- Give yourself time to confront the reality. As unfair and unnatural as it may seem, a child who is terminally ill may not recover. Parents do not expect to outlive their children; it violates our deepest expectations about the natural order of life. It can be extraordinarily difficult to process and accept the fact that a beloved child is dying.
What If the Person Who Is Dying Is a Child?
- Follow the child's lead. Listen first, and support honest communication with the child and among family members. Answer the questions the child asks, but be honest and use language appropriate to the child's developmental level and understanding. Attempts to protect children by withholding or distorting the truth can leave them confused, frightened, mistrustful, or angry.
- Listen for what may be communicated indirectly. Pay attention to questions, statements, play, and behaviors that may reveal other needs, fears, questions, or concerns.
- Help the child continue to live. Encourage opportunities to laugh, play, learn, and experience as much normalcy as possible. Spend time together. Help maintain relationships with friends and classmates through play dates, visits, telephone calls, letters, cards, and email, as the child's condition allows.
- Remember the needs of siblings. Brothers and sisters also need information, reassurance, attention, and opportunities to express their own feelings about what is happening.
- Support the rest of the family. Do what you can to nurture parents, siblings, grandparents, and other close family members and friends who are also experiencing this loss.
- Seek support. Make use of available sources of practical, emotional, financial, and bereavement support for families of seriously ill children, including children's hospitals, social workers, hospice and palliative-care programs, disease-specific organizations, and appropriate charitable organizations.
Related:
- Anticipating The Death of One's Parents
- Anticipatory Grief and Mourning: Suggested Resources
- Anticipatory Grieving: Mourning The Living
- Before All Is Said and Done
- Caregiving After a Stroke: Suggested Resources
- Caregiving in Serious Illness: 8 Ways You Can Help
- Coping with an Impending Death
- Grief: Understanding The Process
- Grieving Before a Death: Understanding Anticipatory Grief
- How to Cope with Anticipatory Grief and Ambiguous Loss
- How to Recognize the Signs of Anticipatory Grief
- Mother's Terminal Diagnosis Teaching Daughter to "Live While Dying"
- Putting Grief On Hold Until Sister Dies Will Not Help You
- The Valley of Anticipatory Grief
- What Is Anticipatory Grief and How Does It Work?
- Why Is Anticipatory Grief So Powerful?
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