The role of caregiver for a spouse or loved one is often all-consuming. Even with respite care, something many caregivers don’t have, the physical, mental, and emotional burden of helping someone you love with activities of daily living takes an inexorable toll. While most caregivers may cherish the time as an expression of love and devotion, they also acknowledge that being a caregiver is the hardest thing they’ve ever done.

But what happens when your role as a caregiver ends – either because your loved one passes away or because they move into a skilled nursing facility? How easy is it to get on with your own life after the drain of being a caregiver is over?

Because this is an aspect of caregiving we seldom consider, we’re turning to this article from NextAvenue for a discussion of making the transition from caregiving to living. Author and entrepreneur Myrna Marofsky, who penned the NextAvenue article, has personal experience with this topic, having cared for a spouse suffering from dementia. We think hers is a helpful perspective for you or someone you may know.

After Caregiving, “I Can’t Figure Out What I’m Supposed to Do”

Marofsky begins her article with quotes from former caregivers she has spoken to – like Ben, whose eyes glistened with years when he told Marofsky about moving his wife to a memory care community. “Now she is there, and I am here,” he said. “I wake up and can’t figure out what I’m supposed to do.”

Or Maura, who told Marofsky, “I need to reclaim my life again, but I don’t know where to begin.”

Marofsky herself understands. She was her husband’s 24/7 care partner for five years. “When he passed away, I expected the grief of his death,” she writes. “I didn’t expect the disorientation that came when my caregiving role ended.”

Being no longer consumed by the manifestations and developments of his dementia, she found that she felt “lighter” without that heavy responsibility hanging over her.  She writes, “Instead of constantly asking, ‘What if?’ I was faced with ‘What now?’”

Life After Caregiving Means Defining a New Path

Marofsky calls life after caregiving a “huge readjustment”. It begins with exhaustion, then evolves into a realization that things are different—including you,” she writes—and then that turns into defining a new path for yourself. “It is a story of finding yourself again after months and years of giving yourself to others,” she adds.

Barb Peterson, a clinical professor at the School of Nursing at the University of Minnesota with a specialty in psychiatric and mental health, describes caregiving as something that can and does cause trauma. Because of this, she says, “ending caregiving requires post-traumatic healing.” While some caregivers might be tempted to just “deal with it”, Peterson reminds us that healing is a process.

She calls it “a time for exploration, giving yourself the freedom to let your brain accept things as they are, being present in the moment, and being courageously honest in asking what do I want?” And she adds, “No one is rushing you to do anything.”

Don’t Ignore the Aftermath of Caregiving Trauma

“In other words,” Marofsky writes, “it is a life transition that requires re-calibration with special considerations.”

Because of this, she warns us not to ignore the aftermath of caregiving trauma: “Lingering exhaustion, guilty relief and confusion do not disappear quickly. The stark realities of age, health, safety and finances result in fearful thinking.”

This is why, she notes, that it’s more effective to call this “re-calibrating” rather than “re-inventing”, and she explains the difference this way: “Re-calibrating focuses on what can exist with some mending, adjusting, repairing, and, in some cases, replacing. ‘Re-inventing’ implies a makeover and feels intimidating and frightening. With intention, the end of caregiving can be an opportunity to create a life designed for you, by you, with no timeline.”

As You Make the Transition, Don’t Let Others Judge

Christina Hansen Cohen, licensed psychologist and creator of the podcast “It’s YOUR Birth Day,” warns not to let others dictate or judge your unique healing process. She says, “If you visit your loved one every day or once a week, it’s OK. If you want to take that trip you have put off, it’s OK. There is no right or wrong here. What is your right is right.”

Marofsky also notes that the mental health world isn’t the only place where you can find advice for how to embark on an important life transition. She writes, “Experts recommend beginning a transition by accepting the present state, letting go of what is ending and acknowledging what has changed. You aren’t responsible for their care any longer. This doesn’t mean discounting the past but finding room for it in your future.”

Self-Care Needed After the Hard Work of Caregiving

While it can feel somewhat normal while you’re in the midst of it, caregiving is very hard on both physical and emotional health. “My body was overworked, my emotions were spent and my mind was tired from needing two brains, mine and his,” Marofsky writes. “Listen to the professionals about what you need for self-care.”

She’s quick to commiserate that giving yourself permission to do nothing but think about yourself can be “unsettling” after months or years of taking care of someone else, but it’s an essential part of the process that she calls “taking inventory”.

“Allow yourself time for self-exploration,” she adds.  

After Caregiving, How Do You Want to Live Each Day?

“What was your life before caregiving?” Marofsky asks. “What values do you ascribe to? How do you want to live each day?”

This is where it can be helpful to talk to a trusted friend or loved one for insights, or even validation. Think about the things that make you happy and bring you a sense of fulfillment. “And,” Marofsky poses, “here is a question that is revealing: What did you give up while caregiving that you are craving to get back?”

In this time of exploring, Marofsky tells us that the “shoulds” from other people will be loud – the things we “should” try, or do, or join in with. But advice, even the well-meaning kind, doesn’t need to be treated as gospel. “I learned to be selective, listening to myself until I hear ‘I want,’” she writes. “Sometimes, I just wanted to be alone.”

Reconnecting with the Old, Embracing the New

William Bridges, a renowned expert and author, states in his classic book “Transitions: Making Sense of Life’s Changes” that you will know when you are ready to move from the “ending and let go” stage to the “in-between” stage to the “new beginning” stage, where you cautiously step into a new reality.

Marofsky adds that a “wow factor” in this process arrives when you begin to reconnect with parts of your old self, while slowly embracing new ways of being. “You may arrange the furniture the way you always wanted it or change your routine to stay up to finish a movie, then sleep in the next day,” she explains. “My friend sheepishly told me she went to bed with dirty dishes in the sink. Another friend ate cereal for dinner. They celebrated these little ‘victories’ as life-changing.”

After Caregiving, Reclaiming Hobbies, Routines, Relationships

What passions, hobbies, or entertainment did you put on hold while caregiving? Marofsky urges: “Reclaim them.” For example, she is currently working through many puzzles she purchased before her husband’s illness while watching her favorite TV shows.

“Little by little, you create new routines and relationships with optimism and renewed energy,” she writes, something Bridges calls an “emotional journey” rather than merely physical or situational changes. “This seems so right when coming out of caregiving trauma,” Marofsky writes. “It’s not about doing things but healing while prioritizing oneself.”

Acknowledge That Your Caregiving Role Has Ended

Marofsky concludes, “Providing care for others is important work. I have no regrets for making sure my husband lived all the days of his life. But that role has ended. It’s time to care for me.”

This permission to “create the space you want to occupy” is freedom, she says. It can be daunting, certainly, “However, re-calibrating your life, reclaiming and defining your transition from caregiving to living is a gift of self-love.”

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(originally reported at www.nextavenue.org)