It seems that the more care that has been given, and the longer the process, the more the guilt. Those who have sacrificed the most tend to experience the most remorse. All of the second-guessing: "Oh, I could have done more," or "Gee, I was cross with my mom," or "I should have spent more time with her." The stories are as unique as the individuals and circumstances involved, but sick-at-heart emotions of guilt and regret remain the same. If the illness or disability has been long-standing and progressive, the person -- and his or her caregiver -- will have gone through a series of losses, and at some point acceptance of the inevitable takes place. In instances such as Alzheimer's disease or neurological disorders such as ALS (amyotrophic lateral sclerosis), the process has been called "the long goodbye."
The farewell in a dementia such as Alzheimer's involves slowly parting with all that has given the loved one's life meaning. The memories, the personality, the relationship, the humor all have to be grieved, and one by one they are. By the time the person actually dies, the caregivers have experienced "anticipatory grief." They often are left numb and, yes, guilty for not feeling sadder.
The parting in a disease process such as ALS involves both the person and the caregiver experiencing the irretrievable losses of function, along with the activities that give life meaning. It can be a grieving shared, or a clearly justified anger on the part of both. Unfortunately, the survivor is also left with guilt.
The obvious stresses of caregiving can be counted as physical, social, financial, spiritual and lifestyle change. What is not so apparent are those in the emotional range, said to be the greatest of the strains experienced by caregivers. Guilt and grief seem to go hand-in-hand and at no time during the agonizing process are these more pronounced than when the person's care has to be turned over to a nursing home or other institution. It reoccurs when there is a medical emergency, such as a fall, and at the time of death. This guilt, along with resentment and a sense of failure, can overwhelm the caregiver.
Guilt: "the gift that keeps on giving." Are there better ways to handle the emotions during and after end-of-life caregiving?
Suffering in silence does not seem to help. Neither does the pat "Oh, you shouldn't feel that way," responses of professionals, friends or family. Especially not helpful is a societal reaction that "tsk tsks" the caregivers' actions and reactions.
Researchers who have studied the association of duty, guilt, grief and health suggest that the emotional havoc that often occurs needs to be owned and acknowledged if long-term psychological damage is to be avoided. The attitude that "it is my pain -- I've earned it" is a good place to begin.
Self-forgiveness, even when there is nothing to forgive, responds well when the feelings are shared in a therapeutic setting. "Been there, done that" support from other caregivers can be especially helpful. Over and over again, support groups have been demonstrated to provide meaningful coping skills. The nonjudgmental approach and sharing of personal experiences, friendships, tears and humor are healing. Support groups can also help impede the development of the emotional despair of guilt and grief.
Beyond support groups -- and professional therapy when needed -- experts recommend caregivers maintain a strong sense of spirituality in their lives. This does not necessarily mean organized religion, although a spiritual community can be helpful as long as it is not judgmental. Rather, they recommend the caregiver utilize those things that replenish the spirit -- music, art, nature, humor, prayer, meditation -- that can give meaning to caregiving.
The paradox is the more we give, the more we can feel guilty. The challenge is to bring balance into the caregiving process.
EDITOR-NOTE:
Barbara Quirk is a geriatric nurse practitioner.
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