Dying in Pieces | The Caregivers Grief April 21, 2016

Elderly woman in focus, companion in back unfocused.

Alzheimer’s is relentless. Individuals are deprived of memories, language skills and the ability to reason, concentrate and know where they are in time and space. As a patient lamented during a moment of clarity, “I no longer have a sense of time and where I belong in the world. I am adrift.” But not only is there the anguish of the Alzheimer’s patient. The words of Shakespeare’s Hamlet are enlightening with the description of accumulating heartbreak. After the death of Polonius and Orpheus together with Hamlet’s apparent madness, are the famous words, “When sorrows come, they come not in single spies. But in battalions!” (IV.V ff) With Alzheimer’s, there is exhaustion, confusion, and turbulence for the caregiver – the sorrows that come “in battalions.”

Caregivers may be surprised to learn that they are going through a grieving period. They may be confused: “How can I be grieving? My loved one is still alive!” But grief doesn’t occur only after the death of a loved one. Grief is a natural reaction to any kind of painful loss including a disease that takes away a loved one’s mind. Alzheimer’s disease is a “series of grief experiences.”

Caregivers grieve as they are forced to redefine and re-evaluate their lives – relationships, careers, and future. There may be the accountability of arranging health-care assistance, checking medications, bathing, and cooking. There may be financial responsibility. There may be the need for alternative arrangements for both the family as well as the patient. The list is endless. Caregiver’s syndrome explains how they may be the last to seek help even though they may be the neediest. As a result of stress, exhaustion and self-neglect, they themselves are at risk for physical and emotional illness. Grieving for an Alzheimer’s patient is not a disorder or a sign of weakness. It is an emotional, physical and spiritual necessity – the price paid for loving and caring. No matter how strong and resilient the caregivers, they may experience the following emotions:

Denial
“There must be some mistake; there is no definitive proof; life will go on as usual.” Denial is a coping tool, a part of grief. When life appears unbearable, denial intervenes. By buffering this catastrophic blow, caregivers are granted time to absorb the reality and face the future. There may be good and bad days as the disease progresses. When the loved one seems better that day, hope and denial spring forth. When bad days return, reality returns. Caregivers must have the courage to confront this sorrowful illness. There is no cure. And as the disease progresses, the patient’s condition steadily declines.

Physical Illness
“I have a sickening sensation in the pit of my stomach.” “I have trouble sleeping.” “I have no appetite.” Caregivers may worry that they too are starting to experience the symptoms of Alzheimer’s disease. These physical problems are real. The caregivers are not hypochondriacs. Aching hearts take a physical toll on the rest of their bodies. They should consult a physician and mention the loved one’s illness.

Anger
With the loved one’s embarrassing behaviors, the groundless suspicions and a sense of helplessness, grieving may turn to overpowering hostility. Anger is a part of mourning. It is important that caregivers acknowledge, express and try to resolve their emotions. Holding back feelings may lead to clinical depression. Caregivers have no control over the words and confusing actions of their loved ones. Both patient and caregiver are victims of this cruel disease.

Guilt
“If only I had known that she would have been stricken with this terrible illness.” “If only we had taken the vacation that I promised her.” “If only I could be more patient, more understanding.” “If only he would die so I could have my life back.”
“If only.” There are always some nasty words that can’t be forgotten; some fight that can never be erased. Even the most dedicated caregivers are plagued with “If only . . .” and “I never did enough.” Guilt is a normal grief reaction, replete with “if only.” Caregivers must accept their fallibilities. All of us fail. No one is blameless. Problems are not solved with “if onlys.” As Judith Viorst says in Necessary Losses, “We saw them as less than perfect and we loved them less than perfect.”

Complicated Grief
“I don’t care how I look anymore.” “I don’t care about anything anymore.” “I would like to go to sleep and never wake up.”
Indications of complicated grief include continuing:

• Feelings of helplessness and hopelessness.
• Decreased energy, fatigue.
• Extended feelings of guilt.
• Severe insomnia, oversleeping, weight gain, weight loss.
• Inappropriate social behaviors, risk taking.
• Excessive use of drugs or alcohol.
• Flashbacks, recurrent nightmares.
• Loss of interest in pleasures that were once enjoyed.
• Suicidal thoughts or actions.

If caregivers become “stuck in their grief,” sinking into apathy and despair, they should consider professional help. A proper diagnosis and treatment are required. Psychotherapy and a variety of antidepressant medications have proved invaluable. Together with emotional support, understanding, patience and encouragement, they will be more equipped to work through their suffering.

Finding Relief
Alzheimer’s disease brings a series of losses – emotionally, physically, behaviorally, and spiritually. Each caregiver must find the most effective coping mechanisms. Suggestions include:

• Giving Alzheimer’s disease a description – GRIEF.
• Acknowledging grief is the first step in its resolution.
• Expressing, not repressing or suppressing, emotions will help to avoid deeper psychological problems.
• Seeking out understanding from caring friends and support groups designed for those experiencing the same heartaches – effective grief work is not done alone.
• Learning to care for themselves – an overwhelmed caregiver cannot be an effective caregiver.
• Finding information about Alzheimer’s and its possible progression.
• Seeking solace in spiritual resources.

Caregivers may gain fresh insights from their grief. Jonathan Kozol, in his book The Theft of Memory, describes his father, an eminent psychiatrist who died at age 102 of an Alzheimer’s- related death. In public, the father was widely acclaimed. At home, he was uncaring and uninvolved. During the long illness, Kozol would recall fond memories, like the times he and his father went fishing together. These rare moments made a past distant relationship more palatable in the present. In sickness, father and son were finally able to make peace.

About the Author

Dr. Earl A. Grollman, a pioneer in crisis management, is an acclaimed writer and lecturer. In 2013, the Association for Death Education and Counseling presented him with its Lifetime Achievement Award, only the fourth time in three decades. This award honors “his national and international impact on the improvement of death education, caring for the dying person and grief counseling.” His books on coping with bereavement have sold more than a million copies.

For further information, visit www.beacon.org/grollman.

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