Tamara Hilliard learned in November 2017 that her husband, then 64, had amyotrophic lateral sclerosis (ALS), a fatal disease of the nervous system.
“I’ve been grieving since we got the diagnosis,” says Hilliard. “For a long time, I’ve been sad, knowing that he was going to suffer, that he was going to die.”
Her husband, Jim, was an orthopedic surgeon and a former college football player. His once hulking body soon began to deteriorate. He was able to walk through 2018, although he transitioned to a walker and eventually a motorized chair. “From Christmas 2019 on, he was completely dependent on me,” she says.
The progression was painful for Hilliard. Jim lost his ability to hold a fork, wash himself and, eventually, speak. “It’s so awful to watch someone you love lose something every day,” she says. “Every day was a loss.”
Social scientists describe an experience like Hilliard’s as anticipatory grief.
It’s a grief process that involves not only dreading a loved one’s pending death, but also mourning the changes in daily life that occur as the person succumbs to illness.
In today’s modern world, multiple factors are combining to amplify occurrences of anticipatory grief. As life expectancies have increased and smoking-related deaths have diminished, degenerative illnesses associated with aging, such as dementia, are increasing.
Public health experts expect higher incident rates for degenerative diseases like ALS, dementia, Parkinson’s and some types of cancers in the coming decades. For diseases like dementia, in which an average of four to eight years stretches between diagnosis and death, a loved one can endure many months of anticipatory grief.
One 2018 study of anticipatory grief found that people caring for spouses with late-stage dementia had higher anticipatory grief than caregivers of loved ones in the earlier stages because their daily life had been altered more extensively.
For Hilliard, grief was a complex and fluid emotion that changed along with her husband’s condition.
The diagnosis was a shock, and she says it felt in the moment like a sudden death, even though he was still alive. “You’re bombarded and you can’t believe it,” she says. “It was like dying.”
She mourned throughout his illness as his body changed and their daily life was altered. Then, she felt a new type of grief during the last six weeks of his life when he was incapacitated and could no longer speak. During that time, she says she remembers she wanted him to pass peacefully so that his suffering would end.
Jim died in September 2021, and Hilliard was left without her husband of almost 34 years. His absence has been a time for her to reflect on their life together. “Now the grief trickles out. Now I feel I grieve the Jim before he was sick. I couldn’t in the moment when I was taking care him,” she says.
She remembers the man she says was brilliant and had a witty, sarcastic sense of humor. She mourns the husband who insisted on having the last word in their affectionate banter by always saying, “I love you more.”
“I miss him, I miss him every day,” she says.
Adapted from Discover Magazine, https://www.discovermagazine.com/mind/living-with-anticipatory-grief.