Caregivers and the Anguish of Anticipatory Grief
What is meant by anticipatory grief? Anticipatory grief begins before a death when aspects of the previous life is lost to disease. The technical term is ambiguous loss when a person is physically present but mentally lost. Addictions, mental psychosis, dementia, or Alzheimers’s are examples of ambiguous loss. Yes, grief and the emotional roller coaster of anger, shock, sadness, guilt, and bargaining can begin without an actual death.
When your family gets the dreaded medical diagnosis such as cancer, Alzheimers, stroke, muscular sclerosis, or fibromyalgia, your family life will never be the same again. Your life story will be marked by the words ‘before’ and ‘after’ the diagnosis. The slow, uncertain, yet relentless movement toward the final death is heartbreaking. One loss and one adaptation after another, and another, and another. Tumultuous emotions between hope and despair are stirred by each mini- loss.
This phrase, anticipatory grief, makes it sound like it’s easy. But it’s far from that. Mainly because the person is there in body but is in decline. The healthy person and the life established in health is disappearing. In many ways, the ill person may become a stranger. Sometimes the decline takes years, as in the case of dementia or Alzeimers’s Disease or stroke. Both the caregiver and the person who is ill experiences this anticipatory grief every time there is another change in health. It is baffling to feel such intense emotions while your loved one still lives.
With every decline and subsequent loss, your everyday life changes. The world for the caregiver gets more onerous with the mounting medical demands along with added household routines. Time weighs heavy with the long list of schedules and appointments. Here are some of the losses that occur to trigger this anticipatory grief in a caregiver and the person needing care:
Loss of mobility and the adaptations around the house and driving.
Loss of a robust social life replaced by never-ending medical appointments.
Loss of the everyday life of social activities and travel. Adjustments to changes are now the ‘new normal’. The past routines, experiences, and joys of life cannot continue in the same way. Finding alternate ways to still enjoy life with family and friends is a healthy adaptation.
Loss of job or career can result from illness. Financial stress may result from loss in income.
Loss of a sexual relationship. It’s important to still connect physically with touch and snuggles.
Loss of appetite or changes in appetite if medical treatments are involved.
Loss of short term and long term memory greatly impairs communication and planning for the future.
Loss of friends, and sometimes family supports lessen, due to the longevity of the decline.
The loss of good health like hearing, eyesight, speaking. Even the appearance of the person can change.
Loss of independence in self care routines.
Loss of hope.
These are some of the tangible physical and emotional losses a caregiver and a family lives through before the final loss. His/her world has been changing for a long time. Not only are there physical adjustments to be made but the emotional burden of this grieving is often overlooked because there is always so much to do. And caregiving is exhausting by itself.
Yet this grief is always present. It needs to be acknowledged as much as possible during those years of decline. Everyone in the family experiences this in their own way and the anticipatory grief becomes an essential part of the dying story. The best response to this continual change and uncertainty is to share what is being thought and felt so the couple and family does not withdraw and isolate because of their grief. Speaking with grief specialists can help normalize this response to caregiving. Support groups breaks the feeling of isolation and provides a community of others who are walking the same direction. Learning and practicing self care will be your superpower to stay healthy yourself. There is awareness and support available so please find caregivers groups and information to keep yourself strong.
Yours in living and loss, Brenda
References:
Boss, Pauline, Ambiguous Loss: learning to Live with Unresolved Grief, (1999). Cambridge: Harvard University Press.
Corr, C.A., Corr, Donna M., Doka, Kenneth J. (2019.) Death & Dying, Life & Living, 8th Ed., Boston: Cengage.
Diets. Bob, (2017). Life After Loss: A Practical Guide to Renewing your Life after Experiencing Major Loss, 6th ed., Philadelphia: Da Capo Press.
Doka, Kenneth, J., (2002). Disenfranchised Grief: New Directions, Challenges, and Strategies for Practice. Champagne, Illinois: New Research Publishers.
Wolfelt, Alan D., (2003). Understanding your Grief: Ten Essential Touchstones for Finding Hope and Healing Your Heart. Fort Collins, Colorado: Companion Press.