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 experienced 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.
Grief at Death
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.
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.
When someone dies suddenly, our first response is often denial, then shock, confusion, and pain. Fatal heart attacks and strokes, car accidents, and suicide can leave family members troubled and searching for answers. In these cases, family members may be left with unresolved issues, such as guilt, anger, anxiety, despair, 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.
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.
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.
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 JOURNEY LIKE NONE OTHER. SUPPORT AND ENCOURAGEMENT FROM THOSE WHO HAVE EXPERIENCED SOME OF YOUR SAME GRIEFS, HELPS.