When her husband, Kevin, died from amyotrophic lateral sclerosis (ALS) at age 36, Jodi O'Donnell-Ames felt utterly adrift, despite having had the previous six years to prepare for his death. As Kevin's health declined to the point where he required a feeding tube and ventilation, O'Donnell-Ames cared for him around the clock. "When there's a diagnosis of a terminal illness, you grieve the losses that take place along the way," says O'Donnell-Ames, who is now 53 and lives in Pennington, NJ. "After he died, I felt lost, alone, and disconnected from the world. I was depressed and no longer knew how to live. I not only lost him, I lost my sense of purpose, which was an unexpected challenge."
In December 2013, Jill Johnson-Young lost her wife, Kathy, to Lewy body dementia less than a year after she was diagnosed. It had been a grueling journey to get a correct diagnosis. "When she died, my grief was punctuated by guilt over how long it took to get answers and what she went through," says Johnson-Young, 55, a mother of three grown daughters and a grief therapist in Riverside, CA. "I was completely exhausted. I had nightmares, trouble concentrating, and poor motor skills. At the office I had to work twice as hard to pay attention." Within four months of Kathy's death, Johnson-Young had a small stroke that left her with balance problems that necessitated walking with a cane.
O'Donnell-Ames and Johnson-Young both discovered that taking action helped them process their grief. O'Donnell-Ames volunteered for an ALS organization and found special ways to honor Kevin's memory. Johnson-Young volunteered in the dementia community. As she grieved, though, she was frustrated by the responses of some people in her inner circle. "I had the same surprise all grievers have: The people you expect to be there for you sometimes are not," she recalls. "They can be judgmental or assume what grief should look like. Grievers should be allowed to smile and cry and decide their own path on their schedule. They need to be able to sort out how to reorganize their new world."
The Underpinnings of Loss
Grief, a complex constellation of emotions including sadness, anger, bitterness, guilt, worry, distress, and despair, "is a normal response to a catastrophic loss, most commonly the loss of a loved one," says Robert G. Robinson, MD, professor emeritus of geriatric psychiatry, neuropsychiatry, and general psychiatry at the University of Iowa in Iowa City. "Grief is characterized by waves of sadness. You may feel fine for a while, then become overwhelmed when you think about the loss of your loved one."
The ways people experience grief can vary. Some people have trouble eating or sleeping normally and lose interest in activities they usually enjoy, says Farrah N. Daly, MD, a neurologist and palliative medicine specialist at the Goodwin House Hospice and Palliative Care in Falls Church, VA. They may have difficulty making decisions or concentrating. Physically, they might feel tired, empty, more sensitive to noise, or more prone to aches and pains than usual. They might even have an existential crisis.
"A loss or death can have an impact on your identity-how you define yourself in the world and explain your life story to yourself," says Lisa M. Shulman, MD, FAAN, endowed professor of neurology at the University of Maryland School of Medicine in Baltimore and author of Before and After Loss: A Neurologist's Perspective on Loss, Grief, and Our Brain (Johns Hopkins University Press, 2018). During the grieving process, people can bounce back and forth between various emotions and challenges.
Different Types and Phases
The common denominator among all types of grief is loss. With anticipatory grief, "family members often start grieving before the loss occurs," Dr. Daly notes. "Knowing that the person is going to die initiates a state of grief, and sometimes family members accumulate small losses over time." That was the case with O'Donnell-Ames, who experienced a steady stream of losses as her husband's ALS progressed.
The bereavement arc can be surprising in situations involving anticipatory grief. "Sometimes we see people who struggle a lot before the death of a loved one and feel no grief after," says George Bonanno, PhD, professor of clinical psychology at Columbia University Teachers College in New York City and author of The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After Loss (Basic Books, 2009). "That's because they felt like they lost the person before he died; after the person died, the stressor was gone."
Research supports the notion that the course of grief can vary widely. A 2015 study published in the Journal of Psychiatric Research followed the mood trajectories of 2,512 adults who had lost a spouse or a child over a period of 18 years: 68 percent of the adults were classified as "resilient" because they had little or no depression at any point during the study; 13 percent had chronic grief, including the onset of depression after the loss of their loved one; 11 percent had been depressed before the loss and their depression lessened later; and 7 percent were found to have chronic depression at all points of assessment.
In her 1969 book, On Death and Dying, psychiatrist Elisabeth Kubler-Ross identified five stages of grief—denial, anger, bargaining, depression, and acceptance-that people go through as they reckon with the reality of their terminal illness. The stages were later applied to family members and friends as they grieve a loved one's loss, with the idea that experiencing the five phases sequentially would lead to recovery and healing. Today there's growing recognition among experts that grief is not so simple. In fact, the stages-of-grief model has largely been debunked, Dr. Robinson says.
Rather than being a linear progression of stages, grief is more like a roller coaster of emotions—without a set timetable for when the ride ends. "Over time, the intensity of grief tends to slowly decline, and the periods between waves of deep sadness get longer," Dr. Robinson says. "As time goes on, most people are able to adjust to the loss and find other ways to experience meaning and enjoyment in their lives."
Ongoing Impact
But for some people, grief doesn't subside. If it continues for more than six months, it can turn into what's often called complicated grief, prolonged grief disorder, or persistent complex bereavement disorder, according to a 2016 analysis of data from the Yale Bereavement Study published in World Psychiatry. These extended grief experiences affect about one out of 10 bereaved adults, according to a 2017 review and meta-analysis published in the Journal of Affective Disorders. These people may become preoccupied with the person who died and disengage from other relationships in their lives. They may ruminate over upsetting aspects of their loved one's death or its consequences. "People with prolonged grief are more likely to have a strong sense of yearning or craving for the deceased, more likely to question their own identity and self-worth, and less likely to have hope for the future," says Lauren Breen, PhD, associate professor of psychology at Curtin University in Perth, Australia.
Ultimately, grieving isn't just about loss. "It's potentially about gain as we reinvent ourselves and grow," says Robert A. Neimeyer, PhD, director of the Portland Institute for Loss and Transition in Oregon. If we take care of ourselves, surround ourselves with supportive people, look for new opportunities, and try to process the loss we've experienced, we can help ourselves reach a new emotional equilibrium, says Dr. Robinson. That's what O'Donnell-Ames and Johnson-Young did: After making peace with their grief, they both embarked on new professional pursuits, and they both remarried.
There's increasing recognition of a phenomenon known as posttraumatic growth, where people experience positive psychological, social, or spiritual changes after emotional trauma. "It's true that healing comes with time, but posttraumatic growth requires insight," Dr. Shulman says. "As we acknowledge the impact our loved ones had in our lives and gain perspective on the difficult and unexpected turn our lives have taken, we can make meaningful choices going forward."
Healthy Ways to Process Grief
After the loss of a family member, sadness can be overwhelming. To reduce the chances of it turning into prolonged grief or a major depressive disorder, consider these strategies. They can help you get in touch with difficult emotions and memories and recharge and restore your body and mind.
Take care of yourself. It's important to try to maintain healthy eating, drinking, exercising, and sleeping habits, says Lauren Breen, PhD, associate professor of psychology at Curtin University in Perth, Australia. "Not only do these things make us feel better, we are better able to look after others who are grieving, too." For Jodi O'Donnell-Ames, whose husband, Kevin, died of amyotrophic lateral sclerosis in 2001, boxing workouts helped her defuse anxiety and sadness while she was struggling with anticipatory grief as his illness progressed.
Keep a journal. Writing about your loss and your feelings can be therapeutic because it "allows raw emotional expression without the filter of social constraints," says Lisa M. Shulman, MD, FAAN, endowed professor of neurology at the University of Maryland School of Medicine in Baltimore and author of Before and After Loss: A Neurologist's Perspective on Loss, Grief, and Our Brain. In addition, it can help you make sense of what you're going through and even give you a different perspective if you ask yourself, What do I want to learn from this experience? "It could also be a form of problem-solving if it helps you recognize deep loneliness and put together a plan for addressing it," says Robert G. Robinson, MD, professor emeritus of geriatric psychiatry, neuropsychiatry, and general psychiatry at the University of Iowa.
Express yourself. Engaging in creative activities such as painting, music, photography, or dance can help you process grief, express your emotions, and foster restoration after a loss, Dr. Shulman says.
Reinvent the connection. "Death ends a life but not the relationship," Dr. Breen says. The challenge isn't to let go of your loved one but to discover new ways to hold on to him or her. For example, you can share memories of your loved one with others, do good deeds in his or her name, or write an online narrative to keep your loved one's story alive, says Robert A. Neimeyer, PhD, director of the Portland Institute for Loss and Transition in Oregon. To honor Kevin's memory, O'Donnell-Ames established a nonprofit called Hope Loves Company with the mission of providing educational and emotional support to kids and young adults who have or have lost a loved one with ALS.
Embrace new experiences. Whether you go to the theater, travel with friends, or take up a sport or a hobby you've always been interested in, "doing new things can give you a sense of meaning and pleasure in your life," Dr. Robinson says. Similarly, volunteering for a worthy cause—perhaps an organization or charity your loved one supported—can facilitate healing and promote a sense of purpose.
Surround yourself with supportive people. "As human beings, we are wired for connection, so it's important to have at least one other person you can speak candidly to about your loss," Dr. Neimeyer says. "We need others in order to grieve well." In a 2018 study in Palliative Medicine, researchers surveyed 678 bereaved adults about the sources of support that were most valuable to them. They found that informal social support topped the list, particularly being with family members and friends who listened and offered comfort. Receiving practical assistance (such as prepared meals or transportation) and participating in activities with friends that create a sense of belonging were also helpful.
Consider counseling. After a loss, people shouldn't hesitate to reach out to a grief or bereavement counselor, says Farrah N. Daly, MD, a neurologist and palliative medicine specialist at the Goodwin House Hospice and Palliative Care in Falls Church, VA. "Counseling is an opportunity to express your emotions without concern for the emotions of the person you're talking to. There's less worry about judgment, which can allow you to process your emotions better." Support groups and online forums offer similar opportunities. And "cognitive behavioral therapy can help [grieving] people understand what they're feeling and correct false judgments and assumptions," Dr. Robinson says. A small 2019 study in Frontiers in Human Neuroscience found that bereaved adults who participated in a mindfulness-based cognitive therapy program were able to regulate their emotions better after eight weeks.
Change the channel in your head. Now and then, it's important to consciously "give yourself permission not to grieve, to put your grief in a drawer and turn your attention to your life so you can reengage people and projects that matter to you," Dr. Neimeyer says. "This helps you lift your head, look up, and reorient yourself to the future." Furthermore, setting yourself up to experience laughter or positive emotions like joy is beneficial when you're grieving, says George Bonanno, PhD, professor of clinical psychology at Columbia University Teachers College in New York City and author of The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After Loss. "[Putting grief away] gives you a breather because you can't feel positive and negative emotions at the same time."
The Hurting Brain
Besides the emotional and psychological shock waves a bereaved person may experience, grief can have a profound effect on the brain. "Grief takes up a lot of bandwidth in the brain," explains Lisa M. Shulman, MD, FAAN, endowed professor of neurology at the University of Maryland School of Medicine in Baltimore and author of Before and After Loss: A Neurologist's Perspective on Loss, Grief, and Our Brain (Johns Hopkins University Press, 2018).
Part memoir, part scientific exploration, Dr. Shulman's book describes the science behind the mind-altering experience of grief and her own journey of loss after the death of her husband, Bill Weiner, also a neurologist, from cancer. "Our brains respond [to grief] by suppressing emotions and memories that we're not ready to handle," she explains. "The stress of grieving activates a remodeling of neural pathways, known as neuroplasticity."
Grief is often associated with disruptions in brain function that lead to confusion, disorientation, detachment, and increased forgetfulness. "After emotional trauma, much of the brain is occupied in managing the stress. That's why we aren't as organized or attentive and don't have as much cognitive flexibility as usual," Dr. Shulman says. In fact, a 2016 study in the journal Neuroimage found that people who had persistent, intrusive grief experienced disrupted activity in the prefrontal cortex—as seen on functional MRI (fMRI) scans—during tasks that involved emotion processing.
Brain Areas Affected
As Dr. Shulman writes in her book, studies involving fMRI scans have shown that grief stimulates key areas of the brain including the amygdala, which regulates the perception of vulnerability and threat and codes the intensity of emotions, and the cerebellum, which is associated with coordination, balance, emotions, and cognition. Grief also affects the cingulate cortex, which is involved in interactions between emotions and memory, and the parahippocampal gyrus, which plays a role in memory. The thalamus, which relays impulses and sensory information to the cerebral cortex (the part responsible for emotional awareness and higher thought processes), is also affected.
"Following emotional trauma, triggers in our environment, such as daily reminders of loss, may repeatedly activate the body's fight-or-flight response," Dr. Shulman says. "This leads to a vicious cycle of distressing dreams and insomnia at night, and rumination and hypervigilance [a state of heightened awareness] by day. In this situation, the amygdala is on overdrive, and we feel anxious and under threat."
Understanding these brain changes provides "a framework for healing and helping the brain recover," Dr. Shulman says. "The goal is to restore the neural pathways that have been amped up and to reverse the effects of chronic stress." One way to do that is to employ the principles of immersion and distraction. Immersion is deliberately exposing yourself to difficult memories and emotions, either by working with a counselor or using opportunities for emotional expression, such as journaling. Distraction is gradual reengagement in meaningful and fulfilling activities, says Dr. Shulman. "Both interventions are difficult but necessary steps on the path to healing."