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.
For John MacInnes, the beginnings of Alzheimer’s disease were startling. The retired executive and former pastor in Bloomfield Hills, Mich., first realized something was wrong as he was delivering a PowerPoint presentation to a community group. “Then in mid-sentence, I had problems,” he says. “I had a well-rehearsed script in front of me, but I couldn’t get the words right, couldn’t get them out. That kind of shook me up.”
Memory loss and impaired thinking are hallmark symptoms of this disease...
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.