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By Paul Wynn

How Caregivers Deal with Anticipatory Grief

Everyone experiences grief, but for caregivers it may be more profound. Learning to recognize it is the first step toward healing and growth.

Illustration by Avalon Nuovo

Tom and Ro Manak were caught by surprise when Ro was diagnosed with Parkinson's disease in 1990 at age 36. She was fully independent for many years, but by 2014 her condition had progressed enough that her doctors recommended deep brain stimulation. During the surgery, Ro had a stroke and never regained full mobility. Because of that, Tom became more involved with her care. A few years after the stroke, Ro developed Parkinson's-related dementia and needed help eating and toileting. In June 2021, she died. “As the losses kept adding up, I felt less and less like her husband and more like her caregiver,” says Tom, who is now 70 and lives in Glen Ellyn, IL.

In 2012, Patti LaFleur's mother, Linda, was diagnosed with early-onset Alzheimer's disease at age 64. Over the next eight years, Linda's husband, Louis, managed her care. When Louis developed vascular dementia and later died of a heart attack, LaFleur moved her mother into her house in Auburn, WA, where she cared for her until Linda's death in 2022.

After her mother died, LaFleur, now 37, felt a deep void. She'd lost her best friend. But it wasn't the first loss during her mother's illness. In the lead-up to LaFleur's wedding in 2018, an event she previously had thought her mother would help plan, she mourned her mother's lack of involvement. “At my wedding shower, we played the game ‘who knows the bride best,’ and my mom should have won but she didn't even know my birthday at that point,” she says. “That was hugely sad for me and just one of so many losses as her disease progressed.”

For both caregivers and care recipients, the losses—of relationships, control, companionship and intimacy, identity, freedom, and love—can be staggering. “Grief can begin at the time of diagnosis,” says Barbara Karnes, RN, a hospice nurse in Vancouver, WA, and author of The Final Act of Living. “And it's typically much more intense for caregivers than noncaregivers because of the close bond they form with the people they are caring for.”

The sadness that many caregivers feel before the death of a loved one is known as anticipatory grief. “Grief is not just an emotion related to death but to loss in general, and that happens to caregivers during their loved ones’ illnesses,” says Megan Carnarius, a registered nurse and author of A Deeper Perspective on Alzheimer's and Other Dementias: Practical Tools with Spiritual Insights.

A study published in BMJ Supportive and Palliative Care in 2022 found that a quarter of all caregivers experience anticipatory grief. Carnarius thinks the percentage is even higher based on the families she's worked with over the years.

It can be especially acute for people who care for those with Alzheimer's disease and dementia, says Kathrin Boerner, PhD, professor of gerontology at the University of Massachusetts in Boston. “As the person becomes almost unrecognizable, the sense of loss can be overwhelming to caregivers.”

And it often goes unrecognized. Kitty Eisele, 59, a longtime editor with NPR in Washington, D.C., didn't realize she was experiencing anticipatory grief until her therapist helped her recognize the signs. Eisele cared for her father, Albert, a journalist and founding editor of The Hill, a newspaper (and now website) that covers politics, policy, business, and international relations, after he was diagnosed with heart disease that led to vascular dementia. She moved back to her childhood home when her father was very sick and not expected to make it past six months, but he persevered and lived for another three years. “It was an eye-opening experience to realize that I was grieving the whole time I was caring for my dad as I witnessed loss after loss of his mental and physical abilities.”

Listen Now!

On the Brain & Life podcast, Kitty Eisele shares the legacy of her father and her experience of being a caregiver for him in his final years after being diagnosed with dementia. Kitty also discusses her podcast that highlights the stories of individuals who are caregivers and how it has impacted their lives.

Grief can encompass a range of emotions. LaFleur says she felt profound sadness and feelings of helplessness and longing for the mother she once had. Like some caregivers, LaFleur felt lost and unsure how to move forward and struggled to reclaim her own identity beyond caring for her mother. Fortunately, she had a strong support system and a group of online friends who were young caregivers like her and could relate to her challenges and heartbreaks.

About one in 10 bereaved people will experience prolonged grief disorder, or intense symptoms of grief lasting longer than a year, a condition that is listed in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM). “Prolonged grief disorder can sometimes lead to other serious health consequences, including risk of suicidal thoughts, so it's critical to recognize the condition and get help,” says Mary-Frances O'Connor, PhD, director of the Grief, Loss, and Social Stress Lab at the University of Arizona in Phoenix and author of The Grieving Brain.

Research has repeatedly shown a higher incidence of death and serious health problems—including increased risk of stroke, heart attack, sleep disturbance, and cancer—among people who have recently lost a loved one. In a study published in Psychosomatic Medicine in 2023, O'Connor and her research team took blood pressure readings of nearly 60 participants who'd lost someone in the past year and noted a significant increase in systolic blood pressure (the top number) after the participants answered a series of questions that elicited grief-related feelings.

The stress of losing someone can activate the amygdala, a part of the brain that triggers the fight-or-flight response and floods the body with hormones like cortisol and adrenaline, says Lisa Shulman, MD, FAAN, endowed professor of neurology at the University of Maryland and author of Before and After Loss: A Neurologist's Perspective on Loss, Grief, and Our Brain, which chronicles her husband's battle with multiple myeloma and explores how the brain is affected by grief. This hormone rush increases heart rate and blood pressure, which can be harmful, especially for people with preexisting heart problems. Studies have found increased levels of cortisol and other inflammatory markers, which are active days and weeks after a serious loss, months later in bodily fluids like saliva.

Recognizing Depression

Grief can morph into depression for some people. That's what happened to Wanda Medina, 62, of Ashburn, VA, after her husband, Hector, was diagnosed with early-onset Alzheimer's disease at age 56. “I noticed symptoms for about three to four years beforehand, but it wasn't until we met with a neurologist that we finally got the official diagnosis,” says Medina. “Most other doctors thought he was too young to have dementia symptoms.”

Hector, a former FBI agent, had been a sweet and thoughtful husband, but his personality changed dramatically as his dementia worsened. “He started losing his temper with me and the kids and isolating himself in the bedroom,” says Medina. Feeling lost and lonely, she became depressed, unable to focus on work or enjoy activities she had previously loved. She finally got help from a doctor who prescribed medication and talk therapy.

Eisele experienced depression when caring for her dad. “I thought I was doing everything right by seeing a therapist and taking medication to treat my depression, but it turns out that I got it all wrong,” she says. Through therapy sessions, Eisele came to realize she was trying too hard to do everything herself. She learned to recognize the signs of overload and take better care of her physical and mental needs. “Some weekends my sister would take care of Dad, and I would check in to a hotel to recharge.”

Caregivers may experience both depression and grief, but they are distinct conditions, says Dr. Shulman. “Depression makes us feel hollow, and there's an absence of joy that pervades every aspect of life, while grief is tormenting and creates a strong sense of loss and yearning for the deceased.” Other signs of depression include a persistent sense of sadness, a decline in self-confidence, feelings of worthlessness, and negativity toward all aspects of life, says Dr. Shulman, who recommends a combination of antidepressants and psychotherapy.

Living with Grief

Everyone grieves differently, but understanding the stages of grief—denial, anger, bargaining, depression, and acceptance—can help people find healthy ways to cope, says Carnarius. For some people, connecting with family and friends eases the pain. Others immerse themselves in work or find comfort privately, says Dr. Shulman. Support groups, meditation, journaling, physical exercise, yoga, tai chi, and spiritual practices all can be effective. “The process of healing is helped by a combination of activities and experiences, some physical and some emotional, some social and some private,” she says.

When his wife, Julia Suarez, died of amyotrophic lateral sclerosis in June 2023, John Clements, 60, processed his grief by organizing a memorial party at his house in El Paso with more than 100 family members and friends. Planning the event kept him busy and distracted. Clements, an Army veteran, also receives counseling from a psychologist through Veterans Affairs to work through the loss of his once vibrant wife.

During Ro's illness, Tom Manak joined a support group for families dealing with Parkinson's disease through Northwestern Memorial Hospital in Chicago that included other caregivers with spouses in similar stages of the disease. People in the group frequently talked and texted about their situations, which helped Tom feel connected. “Even now that Ro is no longer here, I have remained close friends with these people and stay in touch every week, which has helped me feel less alone,” he says.

Moving Forward

LaFleur volunteers for the Alzheimer's Association and Lorenzo's House, a nonprofit organization in Chicago that supports families affected by early-onset dementia. “Since my mother died, I've been doing community education for other Alzheimer's caregivers around how to communicate with their loved ones,” she says. “I also share my story through social media to support other caregivers, which helps me work through my loss.”

After her father died in 2021, Eisele launched Twenty-Four Seven: A Podcast About Caregiving to process her experience and help others on a similar journey. Episodes encompass everything from managing doctors’ appointments and finding assisted living options to figuring out the finances.

Tom Manak plays golf and sings in the same church choir he and Ro were part of for many years. He also decided to see a therapist. “Sometimes you have to try new things to deal with your problems, so I'm hoping talking with someone helps me recover.”

Those seeking solace by themselves may benefit from apps such as Help Texts, Grief Works, and Healing After Death that help people process loss. The offerings vary from meditation and support groups to periodic text messages of encouragement and advice. Help Texts, for example, can customize texts for caregivers who are still caring for loved ones, says founder Emma Payne.

A sample message addressing guilt, reads: “You may worry that you didn't do enough or know enough, or wish you had asked different questions or noticed symptoms sooner. Nearly all grievers find themselves wondering what they could have done differently. Remember all the things you did for your loved one and try to be easy on yourself if these feelings arise.” The Help Text app costs $99 a year and has expanded to serve not only mourners and caregivers but also people who have lost pregnancies or pets.

The Grief Works app has several interactive tools for meditation and sleep and breathing exercises as well as a personal diary to write in. The app is free, but those who subscribe can complete a 28-session course based on a book by Julia Samuel, a psychotherapist. Upgrading allows access to additional tools and practices.

Healing After Death (also free) has a guided meditation that helps survivors support the spirits of the deceased.

No matter how people grieve, there is something to be gained, says Dr. Shulman. “Along this journey,” she says, “caregivers will learn more about themselves and find opportunities for personal growth that emerge from their grief.”