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Grief, Loss of Identity: After Your Role as a Caregiver Ends

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Ask anyone who has spent time as a caregiver for a loved one, and they’ll probably tell you that the job is all-consuming. As a caregiver, your schedule revolves almost entirely around the needs of someone else. While being a caregiver can bring deep emotional rewards, it’s also a role that is deeply exhausting, physically as well as emotionally. The longer your years as a caregiver, the more being a caregiver becomes your identity.

So, given that, what happens when your role as a caregiver comes to an end? When your loved one passes away, how do caregivers fill the enormous void left behind?

For answers to these profound questions, we turn to this insightful article just published by NextAvenue.  In it, feature reporter Paul Winn explores the disorienting landscape facing men and women dealing with a strange mix of newfound freedom and deep grief. The article does a good job of describing the emotional weight of serving as a caregiver, and the sense of loss that can set in when caregiving ends.

When Life Suddenly Changes, How Do Caregivers Cope?

“Caregiving can be one of the most rewarding experiences, but you’re juggling multiple roles,” Winn begins. “You arrange the doctor visits, manage the medications, and handle all the basic needs like cooking, cleaning, bathing and grooming, not to mention endlessly worrying about your loved one. Then in the blink of an eye, your loved one passes away, and you’re no longer a caregiver.”

Winn poses the question: after caregiving, what’s next? Grief and mourning from losing your loved one, certainly, but also what he calls “the anguish of losing your identity”.

This can create a flood of questions that all culminate in one: Who am I, now?

Long-Term Caregivers Face a Loss of Identity

“Caregiving was one of the most rewarding experiences I’ve ever had, but when it ended, I felt so isolated without my own identity,” says Jeff Peterson, who cared for his wife Sherry for more than ten years while she battled a severe case of Lyme disease.

This sense of being unprepared for change was true of Wisconsin resident Deeann Gutenkunst, too, who found herself adrift in the grocery store after her husband passed away because she no longer recalled what she liked to eat, anymore. She was so used to cooking for Charlie, that she had lost even that small bit of herself.  “That was just one example of where I put aside my own interests because caregiving completely consumed my life,” she says.

Or, the way author Denise Brown puts it: “After caregiving, you’re losing a spouse, family member or loved one, and your job.”

She adds, “When caregiving ends, so do the routines and structure to the day, so it often feels like there’s a gaping hole in one’s life. It takes time to fill that void with new activities, interests and people.”

“Post-Caregivers” Must Allow Time to Process Grief

Time heals all wounds, or so they say, and caregivers should expect to allow themselves plenty of time to grieve. Gutenkunst, who cared for her husband at home until he passed away, experienced profound grief when he was gone. “Who knew that grief could cause pain – my heart physically ached,” she says. “But then, over time, grief gradually lost control of me, and I eventually learned to enjoy living alone.”

Brown also felt grief after her mom passed, but she admits that she still feels her mom’s strong and loving presence in her life, and this has mitigated the sorrow. She suggests that caregivers face their sadness, experience it, and don’t ignore it. She says, “Don’t forget the love that was there with your family member because those powerful feelings can help you get through tough times.”

Also, take special note that the first year after a loved one passes can be especially hard with all of the anniversaries and special “firsts”, such as holidays. Experts advise allowing time to do its work in that pain, too. “Don’t feel that your grief is on a timetable,” Brown notes. “[T]ake the time you need to work through your feelings.”

For Former Caregivers, Coping is a Personal Journey

Every caregiver’s grieving journey is unique, and it’s okay for you to find a way to handle it that works best for you. That could be arranging a memorial service, for example, or remembering your loved one in a different way that feels right to you and those around you.

“Being surrounded by friends and family can help people move on,” Brown says. She also points out that the coping mechanisms developed as a caregiver will continue to help you, long after your caregiving ends. Maybe you no longer have the label of “caregiver”, but you still have those traits and skills, like being kind, compassionate, thoughtful, loyal, and committed.

“Your loved one’s death doesn’t end who you are,” Brown says.

Former Caregivers Need to Rediscover a Sense of Purpose

Caregiving often speaks to the heart and soul of a person’s purpose, often for many years. Losing that sense of meaning can be very disorienting. 

Winn writes, “Caregiving can consume someone’s life, and they lose touch with who they are and with the people in their lives. Feeling out of touch with family and friends is normal because there was limited time to stay in touch during caregiving.”

Gutenkunst recalls, “It felt like I was living someone else’s life. It’s taken time, but I’ve reconnected with old friends and built a new life.”

After his wife passed, Peterson stepped back into the caregiver role by moving back to Michigan to care for his ailing mother. But then, in 2021, his mother died from kidney failure, and Peterson felt lost without someone to take care of. Since then, he moved to Virginia to be near his two daughters, and to help take care of his two-year-old granddaughter.

But there is a limit, too. For example, in Brandi Blair’s case, she suddenly was able to devote time to her five children after her mother-in-law passed away in February 2020, but it ended up being a difficult transition for all of them. “I poured so much of myself into her care that when I tried to direct that towards my children in the same way, it ended up being too much for them,” she recalls.

For “Post-Caregivers,” Support is Available

No matter where the end of caregiving finds you, you don’t have to travel this road alone. Winn writes, “Numerous support groups are available for people wanting to connect with other caregivers, including those focusing on grief and bereavement. Local hospitals, community centers and churches are good starting points.”

He adds that national groups like  the Well Spouse Association and GriefShare offer essential resources, online help and connections to local support groups. “In addition, when caregivers experience grief that impacts their daily lives, they should talk to their doctor to receive professional therapy,” Brown advises.

Post-Caregivers Find New Life Through Hobbies, Travel

In many ways, picking up, dusting off, and getting back out into the world can be incredibly healing. Hobbies, exercise, relationships, and travel can all bring a new lease on life for those trying to find their way after caregiving.

Gutenkunst started golfing again, a sport she put aside while caregiving. She also travels to see friends and visits new places.

Peterson has opened himself up to dating again, though he struggles with knowing how to commit to another person. “I’m not sure if I will ever love someone again like Sherry,” he says, “but I’m keeping an open mind in case the right person comes along.”

And Blair started regularly journaling to cope with her grief and eventually turned it into a blog – A Bridge Between the Gap – to help other caregivers navigate their journeys. She also became a certified caregiving consultant, educator and speaker.

She explains, to conclude the article, “It’s helped me manage through the grief by reaching out and supporting other caregivers.”

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