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Caregiver Grief Triggers Mixed Emotions

From the initial diagnosis to a loved one's death and beyond, caregivers are faced with a barrage of conflicting feelings. Here's how to cope with them.
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WebMD Feature

The nation's grief surfaced on Saturday, when former President Ronald Reagan finally succumbed to Alzheimer's disease after a 10-year battle. But in millions of individual American homes dealing with a similar fate, it often starts long before a death.

 

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It may come with the initial diagnosis -- of multiple sclerosis, ALS, cancer, Parkinson's, Alzheimer's, or other chronic, debilitating conditions. Or when a once-vibrant loved one can't recall a treasured memory, move without difficulty, or even go to the bathroom. As their withering continues, over days or decades, this grief often intensifies.

 

"As a family caregiver, you are grieving throughout the entire process, not only with the death of your loved one," says Suzanne Mintz, president and co-founder of the National Family Caregivers Association, who cares for her MS-afflicted husband and whose father also died from Alzheimer's five years ago. "You grieve with each loss -- each time they go down a notch, with each reminder of what was and what it has become."

 

During the course of a chronic illness, caregivers typically experience a range of emotions: Hopelessness. Stress. Guilt. Sadness. Anger. Depression.

A Range of Feelings

"Grief is a reaction to a loss, but it can be -- and with caregivers grief often is -- a multifaceted reaction," says Kenneth Doka, PhD, MDiv, professor of gerontology at the Graduate School of the College of New Rochelle and the author of 17 books on grief, including the new Living with Grief: Alzheimer's Disease.

 

"We tend to associate grief with strictly negative emotions, but it's much wider than that," he tells WebMD. "We know that with the death, there's often relief that the suffering has ended. But there can also be strong feelings of fulfillment. Right now, Nancy Reagan may be saying, 'I got through this. I was by his side, even when he didn't know I was by his side.'"

These conflicting emotions can play havoc with an already stressed and vulnerable psyche, which may explain why nearly one in three caregivers meets the medical diagnosis for depression, according to a study last year in the American Journal of Geriatric Psychiatry.

 

"Caregivers' depression often improves following the loss, but not always," says study researcher and psychologist Holly G. Prigerson, PhD, a grief and bereavement expert at Yale University School of Medicine.

 

"The emphasis is often on the great relief that occurs following the death, once the caregiving and agonizing is over," she tells WebMD. "They think it should be downhill after that, but it's not as easy as that. These people typically have been caregivers for about 10 years -- that has been their identity and mission -- and it can be very difficult for them to regain their life.

 

"I just read a book about a woman whose husband had ALS. After he died, she became suicidal because her main reason for living was to care for him. When he died, she had a gaping hole she had to fill. Just because someone feels relief doesn't mean they also don't feel huge amounts of grief, loneliness, and abandonment."

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