Dana Reeve grieved some losses before her husband died

Editor’s note: CNN Films brings the premiere of “Super/Man: The Christopher Reeve Story” to CNN at 8 p.m. ET/PT Sunday.

Dana Reeve was devoted to caring for her husband, Christopher Reeve, as noted in the new documentary “Super/Man: The Christopher Reeve Story.”

In her diary, Dana expressed a part of her experience that caregivers often hesitate to say out loud, as read by her son, Will, in the documentary.

“I’ve been studying the difference between solitude and loneliness, telling the story of my life to the clean white towels taken warm from the dryer and held to my chest. A sad substitute for a body pulled in close,” Dana wrote about caring for her husband after his near-fatal horseback riding accident that left him paralyzed from the neck down. “The whole man took his last walk away from me five years ago today, leaving only mind, soul, heart and heartache behind.”

The “Superman” actor died at age 52 in 2004 due to heart failure, nine years after his accident, while Dana Reeve died of lung cancer in 2006.

Most of us have acknowledged grief connected to the death of family and other loved ones. But there is another kind of grief, one experienced by Dana and legions of others, that is less commonly explored among caregivers.

This is the grief one feels when processing the fact that their loved ones have significantly changed, and as a result, their lives will likely never be the same. This is the grief Dana was experiencing when she spoke about missing Christopher’s warm hands or the sailing trips that they could no longer take.

Many hesitate to express such grief to avoid undermining the affection and dedication they feel about the loved one they are caring for. But failing to express it can have negative consequences for the well-being of the caregiver, experts say, and ultimately stop the caregiver from finding meaning and purpose in the experience of care.

“For so many, there is this feeling of ‘Well, he is still here, I should be fine. I should be hopeful,’” said Allison J. Applebaum, professor of geriatrics and palliative medicine and director of the Center for Caregiving at the Icahn School of Medicine at Mount Sinai in New York City and author of “Stand by Me: A Guide to Navigating Modern, Meaningful Caregiving.” “But just because he is still here doesn’t mean you aren’t sad about the many losses in your relationship.”

“Giving caregivers the language of grief, and describing what they are experiencing as grief, can be really powerful,” Applebaum said. “It gives validation and structure to the experience.”

Understanding your grief

In her practice, Applebaum helps her patients better understand which types of grief they are experiencing.

She said there are two types of grief that is experienced before the death of the person they care for. The first is “anticipatory grief,” which describes the sadness and anxiety about that person dying. The second is “present-oriented illness-related grief,” which Dana Reeve was expressing in her diary.

Applebaum encourages caregivers to express this grief to themselves, a mental health professional and to others. Doing so is key to adjusting to life as a caregiver and, ultimately, finding deeper value and connection in the experience.

“I strongly believe as a clinical psychologist and someone who has been in this experience myself, that if we don’t allow ourselves to grieve and express negative emotions that bottle up, then we don’t have as much access to the meaningful parts of the care experience and the possibilities to grow from it,” she said. “Grief is a portal to meaning and growth, allowing you to connect to the things that are still there.”

Grief is an ongoing process

Caregiver grief isn’t usually a one-time experience.

Courtney Martin said she’s been “experiencing micro-griefs of the little deaths along the way.” She’s a caregiver-in-residence at The Sandwich Club, an online community and resource for sandwich caregivers, and cares for her father with dementia and her two daughters in El Cerrito, California.

Up until recently Martin has been reading spiritual books to her dad, a ritual that connected her to their long history of talking about sacred practices and the meaning of life. But one day he told her he didn’t want her to read to him out loud anymore.

As a sandwich caregiver, finding time and space to work through such mini-grief moments can be tricky. But Martin understands that she must find time to process these feelings, otherwise she won’t be able to show up for her dad or her kids. “I cry in my car, and on hikes, and I’ve gotten into listening to music really loud, which is more a way to express anger and sadness,” she said.

While she does express some of this grief to her daughters, ages 8 and 11, she said she’s careful to protect them from the extremes of her pain.

“I want to teach them that the depth of my grief is related to the depth of my love for him. That is a profound life lesson,” she said. “At the same time, the depth of my sadness can be so intense, and I don’t want to expose them to all of it.”

Don’t grieve alone

Like most things in life, grief is best dealt with through conversation, whether it’s talking to mental health professionals, friends or family. And for many, the first step is coming to terms with the caregiver identity and saying it out loud.

This was the case for Aaron Barnhart, who cares for his wife, Diane, in Evanston, Illinois.

“A big turning point for me came when I was willing to tell other people that I casually knew that I was a caregiver,” said Barnhart, who writes about caring for his wife with Lewy body dementia in his newsletter, The Diane Project. “One day I was out with my running group and someone asked me what I did, and I realized that I was a full-time caregiver for my wife and I needed to talk about that.”

“This was after a year of some of the most wrenching changes you can go through with your loved one. Someone who you have spent so much of your life with begins to change profoundly from cognitive disease.”

While Barnhart had spoken to close friends and family about his caregiving, there was something particularly healing about being able to say it matter-of-factly with acquaintances. The self-identifying as a caregiver more publicly led to talking about it more and accepting it more, which, in turn, led to some relief from his grief.

Other caregivers process some of their hard feelings alongside the loved one they care for.

In 2022, Robbyn Washington had an accident that led her to a diagnosis of quadriplegia, which changed her life, and that of her husband, Vince, overnight. He became a dedicated caregiver, entering “uncharted waters” that have been both emotionally and physically challenging to navigate, even as they both hold hope for Robbyn’s recovery.

The Snellville, Georgia, couple found that having regular and honest conversations was an important way for Vince to maintain his fortitude and process his grief.

“One of the things that Vince does well is that he comes to me, and we talk about our weakest moments … and the frustrations we are feeling,” Robbyn said. “Sometimes we may get angry for no apparent reason, and when that happens, we will sit down and talk through it, so it doesn’t have time to fester. It doesn’t feel like therapy, but it really is.”

Asking for help

One of the biggest barriers to experiencing grief is the sheer busyness of life as a caregiver. When there is not enough time in the day to take care of basic needs, who has time for emotions? Effectively processing grief requires bandwidth and time to rest that’s only possible if the caregiver asks for help.

“We’ve found that caregivers’ communities are often waiting to help, but people are uncomfortable about asking how they can help or worry that will burden the caregiver,” said Tia Newcomer, CEO of CaringBridge, a social network designed for caregivers to share updates and seek support.

Beside easing the burden, asking for help pushes caregivers to figure out what they need, contemplate what they are going through and even reckon with their own vulnerability in their new role.

“The more you can talk about your need for help and not be ashamed of it, the grief is lessened and lightened,” Newcomer said.

Remember that grief is part of love

Applebaum isn’t just an expert in this area. She’s also lived it.

As she was caring for her own dad, she found that discussing her grief allowed her to find the courage and vulnerability she needed to connect with her father in his dependent state — and connect with herself in her new role.

“It helps to remember that grief is love disguised, and feeling it allows us to connect with the love that is there,” she said. “Ultimately, we wouldn’t be grieving if there wasn’t any love.”

At Christopher Reeve’s funeral, his wife, Dana, spoke of this very love, one that sat side by side with her grief. “I promised to love honor and cherish him till death did us part. Well, I can’t do that, because I will love, honor and cherish him forever.”

Elissa Strauss is a journalist who writes about parenting and caregiving. She is the author of “When You Care: The Unexpected Magic of Caring for Others” and the newsletter Made With Care.

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