Alzheimer’s disease and ‘the long goodbye’

Coping with end of life experience a difficult proposition

by Brad Hundt | observer-reporter.com

The protracted period from diagnosis to death from Alzheimer’s disease has been called “the long goodbye,” and for good reason.

Other individuals afflicted with terminal diseases, whether it’s cancer that has metastasized beyond the reach of treatment, or heart disease that has fatally weakened cardiac muscle, retain the basic elements of their personalities until they draw their final breaths. But with Alzheimer’s disease, as it slowly progresses, the components of an individual’s personality are worn away along with their cognitive skills and memory. Usually, near the end, they no longer even speak. Their body declines, but the pace of their cognitive decline is speedier. Usually, by the time someone with Alzheimer’s disease dies, the traits, tendencies and abilities the person possessed have long since departed.

Friends and family of the individual with Alzheimer’s disease become strangers, and, in a sense, the individual with Alzheimer’s disease becomes a stranger to family and friends.

That fact often changes the grieving process for those left behind. When death does come, it often seems like the person they knew and loved has, for all intents and purposes, been gone for a while.

That was what Mary Jo Podgurski found. Her mother’s death from Alzheimer’s disease in 1996 followed just a few months after the director of the Academy for Adolescent Health Teen Outreach endured the death of her father after he succumbed to lung cancer. Podgurski found that, while she felt all the rawness one feels at the death of a parent when her father died, her response was more muted when her mother died.
“I felt a lot of guilt,” she explained. “I was close to both parents, and I grieved deeply for my father. But I felt guilty when I wasn’t as sad when my mother died. It wasn’t the same kind of grief.”

After some reflection, she realized, in her words, “that I had lost her a decade before.”

She continued, “You feel a gradual loss. My mother was such a bright, active woman. She was so well-read, you could talk to her about anything. When she actually died, I felt strangely empty of grief.”

Patty Henderson, a counselor with the Alzheimer’s Disease Research Center at the University of Pittsburgh, says she frequently hears similar observations from loved ones of someone in the grip of Alzheimer’s disease, or someone who has just died from it. Spouses or children often grieve not only for the absence of the person they once knew, but also for the roles that person once played and the day-to-day skills they once possessed.

“The person is changing before your eyes,” Henderson said. “If it’s a spouse, you’re losing your partner. If it’s a parent, you’re losing an authority figure. That can be a very difficult thing.”

A 2008 study carried out at the University of Indianapolis found that grief was, in fact, the heaviest burden that those caring for a loved one with Alzheimer’s disease had to endure. The study focused on the idea of “anticipatory grief,” and mourning the loss of someone before they actually die, and “ambiguous loss,” which arises when you are dealing with someone who is no longer psychologically or socially present. Both issues trumped the daily frustrations of caring for someone with Alzheimer’s, the study found. It urged that caregivers be made to understand that these feelings are normal and widely shared.

Unlike Podgurski, Mary Ann Crabtree’s mother is still alive. Crabtree, a McMurray resident and psychologist, said that she is well acquainted with the feelings of loss that are part and parcel of dealing with a loved one with Alzheimer’s disease. Her mother, who is approaching her 100th birthday, “has changed a lot,” Crabtree explained. She can no longer read books, watch anything with the simplest narrative on television and has more or less lost the ability to “hold a thought.” The educated, thoughtful mother she once knew now revels in “America’s Funniest Home Videos,” because that’s about all she can follow.

“She doesn’t remember her old friends or her old jobs,” Crabtree said.

The feeling that someone is already gone before death fully claims them – that they are “a shell,” in the words of Paul Tripoli, a Washington-based clinician and counselor – leads some friends and family members to stop visiting someone with Alzheimer’s disease altogether.

“Some people say, ‘It just isn’t Grandma,’” Tripoli said.

When people who are grieving the loss of someone afflicted with Alzheimer’s, Tripoli tells them that even if they start grieving before someone is gone, that doesn’t guarantee that the loss with be felt less acutely when the person actually does die.

“What we try to tell people is that no matter how much you grieve, it doesn’t have a quantity to it,” he said. “There really isn’t a quantity.”

And despite the fact that there is common ground among those who have lost, or are in the process of losing someone, with Alzheimer’s disease, grief in any form remains a deeply personal, idiosyncratic experience.

“Obviously, it’s very individual,” Henderson said. “You can’t say that everyone will experience the same thing.”

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