We generally think of grief as a reaction to a death. But there is another grief that comes from loss while someone is still living. This grief is often seen when caring for someone with a chronic illness. Chronic illness, and particularly any illness that impairs a person’s cognitive ability, causes caregivers and loved ones to experience grief and loss right now. In this fact sheet, we will discuss the grief related to death and dying, and grief associated with chronic illness. It is natural to grieve the death of a loved one before, during and after the actual time of their passing. The process of accepting the unacceptable is what grieving is all about.
Over time, with most chronic illnesses, there are changes in a person’s abilities. Whether it is someone living with Parkinson’s Disease who can no longer button a shirt, or someone coping with Diabetes who has to follow a special diet, or someone with Alzheimer’s Disease who can’t remember who you are, caregivers have to adjust to the needs of the care receiver. Caregivers may experience many kinds of losses: loss of independence, loss of control, loss of the future as it had been imagined; loss of financial security, of the relationship as it once was, loss of freedom, sleep, and family harmony; loss of someone to share chores and other tasks with, or simply the loss of someone to talk things over with. Persons with chronic illnesses also have to adjust to many of the same losses, but also—loss of dignity, mobility, a carefully planned future or retirement, a loss of roles that were played, or the loss of a sense of worth (all depending on what disability is associated with the illness).
It is easy to ignore these losses and just keep doing the things that need to be done. However, these losses lead to grief, and grief can lead to sadness, depression, anger, guilt, sleeplessness and other physical and emotional problems. It is important to identify our losses, identify our feelings, and let ourselves grieve the changes that have happened in our lives. When we can do this, our feelings will less often erupt as angry outbursts weighed down by guilt, or creep over us as depression and hopelessness; they instead can more easily be expressed as a shared loss of something treasured—which family and friends close to the situation can likely empathize with, leading to deeper communication and stronger relationships with those going through the loss with you.
Writing in a journal can help you to name and express your feelings about these losses. You can combine it with a gratitude journal—things that you are thankful for. Prayer, meditation, relaxation exercises, attending a support group (or simply talking with a friend or counselor), or creating a ritual can help you to let go of the intensity of the feelings so that you can grieve but also heal.
Ambiguous loss is what we experience when someone is still “there” but also not “there.” This is mainly experienced when someone has a cognitive impairment from dementia, a traumatic brain injury or a stroke. We also experience ambiguous loss when someone with dementia has “moments of lucidity,” when he/she is clear and makes sense for a short period of time. It is hard not to think that if they can do this every once in awhile, they ought to be able to do it all of the time. When they return to their confused state, we often experience anger, frustration and disappointment—renewed grief. [See the FCA Fact Sheet, Caregiving and Ambiguous Loss, for more information on this topic.]
When caring for someone over time, we may start to grieve that person long before they die, we grieve the loss of the person’s “former self.” Experiencing loss on a daily basis, as well as anticipating the loss at the end of life, knowing what is coming, can be just as painful as the loss associated with a death. Caregivers may experience guilt or shame for “wishing it were over” or thinking of their loved one as already “gone” (particularly when someone has a cognitive impairment). It is important to recognize these feelings as normal. Ultimately, anticipatory grief is a way of allowing us to prepare emotionally for the inevitable. Preparing for the death of a loved one can allow family members to contemplate and clear unresolved issues, make end of life plans for funeral and burial, and experience their pain in stages. Sometimes, when someone has grieved a death over a long period, there is less grief when the person dies; sometimes there is more pain when a person dies.
Grief is a natural emotion, a universal experience that makes us human. Because it is intense and uncomfortable to feel, we often try to find ways to avoid experiencing the immensity of the emotion—through distraction and busyness. We grieve because we are deprived of a loved one; the sense of loss is profound, the change in roles is confounding, and we may become uncertain of our identity. Often caregivers are in the situation of having to make changes in their circumstances—where to live, financial concerns, relationships—along with fear of not knowing what lies ahead.
Grief lasts a long time. Recent research has shown that intense grieving lasts from three months to a year and many people continue experiencing profound grief for two years or more. Our society expects us to be “doing fine” in about two weeks. It is common to think there is something wrong with us if our grief “lasts too long.” The grieving process depends on our belief system, religion, life experiences and the type of loss suffered. Many faiths have rituals for recognizing grief and loss during at least the first year after a death. We also expect other family members to show their grief in the same way we do, even when we can say that everyone grieves differently. There is no right or wrong way to grieve; grief is an individual process. Many people find solace in sharing their grief with family and friends; others find solace by attending grief support groups offered in every community through their local hospice (even if you did not have hospice services). If you are feeling overwhelmed and concerned about your own grief process over time, seek professional help.
When someone dies suddenly, our first response is often denial, then shock, confusion and pain. Fatal heart attacks and strokes, car accidents, suicide can leave family members perplexed and searching for answers. In these cases, family members may be left with unresolved issues, such as guilt, anger, and feelings of emptiness. Sometimes we have to learn to forgive ourselves and our loved one who died. It can take longer to heal from this loss and it is important to give yourself time to grieve before pushing yourself to “move on.” Getting support from family, clergy, friends, and grief groups can help.
Grief affects our whole being—physically, socially, emotionally and spiritually. Each of us will have different symptoms. If you have had a previous loss, you may experience grief this time in a similar or different way, depending on the situation, your relationship with the deceased, and other significant emotional factors in your life at the time. Culture, religion and social norms influence what we are comfortable showing to others and even what we are comfortable admitting to ourselves.
There is no road map for dealing with grief. There are stages that most people go through, but they are not a linear progression from stage 1 to stage 2, etc. We “visit” these stages at different times during the grieving process, depending on what is happening in our lives, for instance, special occasions, like anniversaries and birthdays. And we might go back to a stage years later, such as loneliness and isolation or depression. Although Elizabeth Kubler Ross defined the five stages below, many clinicians think there are more or different stages.
Taking care of yourself in difficult times is hard. Trusting your own process will help you to do what you need to do in order to best take care of yourself. Acknowledging your feelings—good and bad—will help you to cope better with whatever is happening. Read, journal, get support, cocoon, or whatever is nurturing for you.
A Journey Through Grief: Gentle, Specific Help to Get You Through the Most Difficult Stages of Grieving, Alla Renee Bozarth Ph.D., 1994, Hazeldon
Good Grief, Granger Westberg, 2010. Fortress Press
On Death and Dying, Elisabeth Kubler-Ross, 1997, Scribner
Don't Take My Grief Away, Doug Manning, Glenda Stansbury and Kathy Burns, 2011, Insight Books
Beyond Sympathy, What to Say and Do for Someone Suffering an Injury, Illness or Loss, Janice Harris Lord, 1989, Pathfinder Publishing
How Can I Help? / What Will Help Me?, James E. Miller, 1994, Willowgreen Publishing, 509 W. Washington Blvd., P.O. Box 25180, Fort Wayne, IN, (219) 424-7916
Why Her. Why Now, A Man’s Journey Through Love and Death and Grief, Lon Elmer, 1987, Bantam Books
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer's disease, stroke, head injury, Parkinson's and other debilitating disorders that strike adults.
225 N. Michigan Avenue
Chicago, IL 60601-7633
(312) 335-8700, Helpline: (800) 272-3900
The Fisher Center for Alzheimer’s Research Foundation
199 Water Street, 23rd Floor
New York, NY 10038
Center for Loss and Life Transition
3735 Broken Bow Road
Fort Collins, CO 80526
National Hospice and Palliative Care Organization
1731 King Street Suite 100
Alexandria, VA 22314
Hospice Foundation of America
1710 Rhode Island Ave, NW
Washington, DC 20036
Originally prepared by Family Caregiver Alliance in cooperation with California's Caregiver Resource Centers, a statewide system of resource centers serving families and caregivers of brain-impaired adults, and funded by the California Department of Mental Health. Revised and updated in 2013; reviewed by Rabbi Jon Sommer, Professional Grief Caregivers' Network, October 2013. Copyright © 1996, 2013 Family Caregiver Alliance. All rights reserved.