Understanding Caregiver Grief

From a breakout session at the Wisconsin State Conference on Alzheimer’s and Related Diseases, Caregiver Speaker, Elaine K. Sanchez, speaks about the importance of caring for the caregiver. In this segment she talks about recognizing and coping with caregiver grief.

Grief is the normal, natural, healing response we experience when we lose someone or something we value. Caregivers go through a different process known as Preparatory Grief. Preparatory Grief is different from other types of grief in that it requires continual adjustment to ongoing losses. It includes losses we have already experienced, losses we are experiencing in the present, and losses we fear are still ahead. We need to stay connected to the person we are losing, while we are in the process of losing them. It can be especially painful to be caring for the body of a person we have known and loved for so many years knowing that emotionally and mentally that person is no longer present.

It is not unusual for caregivers who are experiencing Preparatory Grief to display the following symptoms:

  • Difficulty Sleeping
  • General fatigue; lack of energy
  • Change in appetite, either a gain or a loss
  • Physical ailments such as headaches, stomachaches, intestinal problems, back and shoulder pain
  • Irritability
  • Withdrawal from friends, family, and social connections

Sadness is a common emotion associated with Preparatory Grief. It is not unusual to experience:

  • Longing for what was and will never be again
  • Longing for what you and your loved one will not be able to do, see, or enjoy together in the future
  • Regret for what you will both be missing as the illness progresses

Denial is often a part of the caregivers experience. People have a tendency to:

  • Not see the care receiver’s condition realistically
  • Hope that changes will not be progressive or permanent
  • Minimize decline and be reluctant to advance to a level of appropriate care

Acceptance is the act of developing a realistic understanding of and expectation of the situation. It does not always come easy. Acceptance takes time as well as a lot of mental and emotional effort. It generally follows periods of anger, guilt, depression, sadness, and denial. It helps to realize that:

  • It is difficult to maintain balance in a constantly changing situation
  • You don’t want things to be the way they are, but you recognize that you are powerless over certain aspects of your loved one’s condition
  • It is possible to experience personal, emotional, and spiritual growth while caring for a terminally ill person

*Special thanks to Dr. Virginia Tyler, LPC, with Samaritan Evergreen Hospice, Albany, OR for sharing her information on Preparatory Grief.

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