Grief & Caregiving

Caring for a loved one during a life-limiting illness can impact the grief reactions we have after the person dies. In addition to more expected reactions, we may feel an acute sense of loss over the role that caregiving has played in our life, or even relief that intense caregiving duties are over.

Mourning before the death

The term anticipatory grief was coined by psychiatrist Erich Lindemann in 1944 and further developed by psychiatrist Knight Aldrich in 1963 to describe the mourning by both patient and survivors preceding the actual death. There is some contradiction in the research as to the affects anticipatory grief has on survivors after the death. However, hospice counselors are well aware of the issues and challenges that may arise during a prolonged period of anticipatory grief, such as when the patient has Alzheimer’s, ALS, or some forms of cancer.

Articles for support

Journeys author and psychotherapist Judy Tatelbaum, MSW, shares her thoughts and advice:

"There is a natural sense of loss when the need for our caregiving is over. We must often face the double sorrow of losing a loved one and our purpose or role in their lives.

"The aftermath can be a very difficult time that leaves us feeling lost, lonely, and useless. We may not feel grounded without that important function of taking care of another in our lives. Our direction may feel unclear. The future may look bleak or even empty."

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Dr. Ken Doka discusses Guilt and Regret in Prolonged Illness 

"It often is said that sudden death is hard on survivors but easy for the person who died. That same conventional wisdom may view death after a long illness as being easier for survivors. The truth is more complex. Each death is difficult— but in its own way. Sudden deaths do leave survivors feeling shocked and vulnerable, but death after a long illness can still leave survivors feeling numbed and exhausted.

"Survivors of any death still grieve. When death follows a long illness, that grief can be evident in feelings of guilt and regret that may arise from the illness experience itself."

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