Q: 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?

A: 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 began years before. Which do you think is the hardest — never having the opportunity to express one's love and devotion during those final moments or watching the person you care about slowly disappear one day at a time? Without question both situations can be devastating to caregivers and family members. The latter scenario is sometimes referred to as the long goodbye.

It is not unusual for individuals diagnosed with Alzheimer's disease or related dementias to battle the medical and behavioral complications for years from the time their symptoms first appear 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 clashes of emotions.

A survey conducted by the Indiana Chapter of the Alzheimer's Association determined "the fundamental barrier experienced by Alzheimer's caregivers appears to be a combination of anticipatory grief and ambiguous loss, rather than hand-on-care issues." Essentially what this showed was caregivers were truly feeling the pain of grief long before the actual death and a certain disharmony of providing physical care for someone whom they are no longer able to connect with socially or psychologically.

This information clearly points out respite care and in-home services can be beneficial to caregivers but the 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 his or her role without jeopardizing his or her own physical health and emotional well-being.

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Rosanne DiStefano is the executive director of Elder Services of the Merrimack Valley. Do you have a question? E-mail to ro@esmv.org.