The Long Good-Bye
Question: I just started attending a caregiver support group to learn more about community resources and services for my elderly parents. One member who is caring for a spouse with dementia sometimes sounds like the person has already died. I thought this was so strange but obviously I don’t understand her situation. Is this unusual?
Answer: Losing someone you love is never easy, regardless of the circumstances. In some instances death comes very quickly without any forewarning. In other situations, death may be the final physical act but the actual dying process may occur over many years. It’s difficult to say which is the harder situation—never having the opportunity to express your love and devotion during those final moments or watching the person you care about slowly disappear one day at a time. Both situations can be devastating to caregivers and family members. The latter scenario, where the end of life is a prolonged process, is sometimes referred to as the “long good-bye.”
Individuals diagnosed with Alzheimer’s disease or related dementias often battle the medical and behavioral complications of the conditions for years until their ultimate death. Families caring for someone with dementia often start the grieving process long before their loved one passes away. Many times the caregiver is not even consciously aware they are plodding through the stages of grief. They may be somewhat aware of bouts of sadness, depression, frustration, and even anger or resentment, but they might not be able to put a label on the experience nor completely understand why they are experiencing these emotions.
Speaking about survey responses from Alzheimer's caregivers, Associate professor Jacquelyn Frank of the University of Indianapolis’s Center for Aging & Community said, “The fundamental barrier experienced by Alzheimer’s caregivers appears to be a combination of anticipatory grief and ambiguous loss, rather than hands-on-care issues.” Caregivers who responded to the survey truly felt the pain of grief long before the actual death. They felt unconnected when providing physical care for someone with whom they were no longer able to communicate with socially or psychologically.
Such information clearly points out that respite care and in-home services can be beneficial to caregivers, but emotional support should never be overlooked. Caregiver support groups and individual counseling services can make a huge difference in whether or not the caregiver is able to continue in their role without jeopardizing his or her own physical health and emotional well-being.
