After Caregiving, What's Next?

Caregiving can be one of the most rewarding experiences, but you're juggling multiple roles. 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.

What's next after caregiving has ended? There's the grief and mourning of losing your loved one, but just as important; there's the anguish of losing your identity. A flood of questions arises: How do I move on, where do I belong, and what can I possibly do that's as meaningful as caregiving?

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

Deeann Gutenkunst of Hartland, Wisconsin, was unprepared as well. She recalls shopping in the grocery store soon after her husband Charlie passed away after a decade-long battle with Alzheimer's disease. She didn't remember what she liked to eat anymore because she was so used to cooking for him. "That was just one example of where I put aside my own interests because caregiving completely consumed my life," she said.

After caregiving, you're losing a spouse, family member or loved one, and your job, said Denise Brown, author of "After Caregiving Ends, a Guide to Beginning Again."

"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," said Brown. "It takes time to fill that void with new activities, interests and people."

The adage "time heals a broken heart" is one that many caregivers can relate to. Gutenkunst, who cared for Charlie at home until he passed away, experienced emotional and physical profound grief. "Who knew that grief could cause pain – my heart physically ached. But then, over time, grief gradually lost control of me, and I eventually learned to enjoy living alone."

Brown grieved for a while, but she admits that she feels her mom's strong presence in her life, which has helped manage her sadness. She suggests that caregivers should allow themselves to experience their sadness and not ignore it.

"Don't forget the love that was there with your family member because those powerful feelings can help you get through tough times," Brown said.

After a loved one passes, the first year can be hard with the "firsts" like birthdays and holidays. Getting through these special days is difficult, which is why experts advise taking time to work through the grieving process. "Don't feel that your grief is on a timetable – take the time you need to work through your feelings," noted Brown.

Finding ways to cope with the grief and the death of a loved one is a personal journey. For some, that may mean arranging a memorial service or remembering a loved one in a different way. "Being surrounded by friends and family can help people move on," said Brown.

Brown points out that the coping mechanisms developed during caregiving will also help when caregiving ends. For example, you may lose the label "caregiver," but she explained that you still have all the traits that made you a caregiver, like being kind, thoughtful, loyal and committed. "Your loved one's death doesn't end who you are," she said.

Finding a new purpose in life is not always an easy journey for caregivers. 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. 

"It felt like I was living someone else's life," recalled Gutenkunst. "It's taken time, but I've reconnected with old friends and built a new life."

After his wife passed away, Peterson moved back to Michigan, where he was from, to help care for his ailing mother. "It gave me purpose to come home and help my mom and step back into my caregiver role," said Peterson. 

Then, in 2021, his mom died from kidney failure, and Peterson felt lost without someone to care for. He has since decided to move to Virginia, where his two daughters live, to help take care of his two-year-old granddaughter.

When Brandi Blair's mother-in-law passed away in February 2020 from kidney failure and sepsis, she could devote all her time to her five children. She said, "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."

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. 

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, said Brown.

There are many ways to rediscover life through work, hobbies, exercise, relationships or travel. Gutenkunst started golfing again – a sport that she put aside while caring for her husband. She took several trips to see friends and continues to visit new places.

Peterson started dating again and was in a relationship for over a year but had a hard time committing. "I'm not sure if I will ever love someone again like Sherry, but I'm keeping an open mind in case the right person comes along," he said.

Blair started journaling to cope with her grief and eventually created her blog – A Bridge Between the Gap – to help other caregivers navigate their challenging journey. She also became a certified caregiving consultant, educator and speaker.

As she explained, "It's helped me manage through the grief by reaching out and supporting other caregivers."

Paul Wynn has contributed feature and news stories to more than 65 publications throughout his career. He is a graduate of Ithaca College's Park School of Communications. He lives with his family in New York's scenic Hudson Valley. Read More