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Transitioning From Caregiving to Living

How to reclaim your life and rediscover personal passions after caregiving duties end

By Myrna Marofsky

Ben's eyes glistened with tears as he spoke to me about moving his wife to a memory care community when he could no longer handle her care. "Now she is there, and I am here. I wake up and can't figure out what I'm supposed to do."

When her caregiving role ended, Maura told me, "I need to reclaim my life again, but I don't know where to begin."

A woman sitting on a bench closing her eyes. Next Avenue, caregiving
Life after caregiving is a huge readjustment — first, the exhaustion, then the realization that things are different, including you, and then the task of defining a new life path.  |  Credit: Getty

New Life Path

For five years, I was my husband's 24/7 care partner. When he passed away, I expected the grief of his death. I didn't expect the disorientation that came when my caregiving role ended. No longer was I consumed with how his dementia would manifest itself. My shoulders felt lighter, with the heavy responsibility of keeping him content and safe lifted. Instead of constantly asking, "What if?" I was faced with "What now?"

Life after caregiving is a huge readjustment — first, the exhaustion, then the realization that things are different, including you, and then the task of defining a new life path. It is a story of finding yourself again after months and years of giving yourself to others.

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 trauma-inducing. As a result, she says, "ending caregiving requires post-traumatic healing." While caregivers might think they should be able to "deal with it," Peterson looks at this healing as a process. She describes it as "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?" She adds, "No one is rushing you to do anything."

With intention, the end of caregiving can be an opportunity to create a life designed for you, by you, with no timeline.

In other words, it is a life transition that requires re-calibration with special considerations. Do not 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.

That's why I call this "re-calibrating" rather than "re-inventing." 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.

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Making the Transition

Christina Hansen Cohen, licensed psychologist and creator of the podcast "It's YOUR Birth Day," advises not to let others dictate or judge your process. "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."

Guidance for the transition from caregiving to living can be found in the proven transition methodologies outside the mental health world.

Experts recommend beginning a transition by accepting the present state, letting go of what is ending and acknowledging what has changed.

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.

Remember, caregiving was hard work. My body was overworked, my emotions were spent and my mind was tired from needing two brains, mine and his. Listen to the professionals about what you need for self-care.

Shutting down the constancy of caregiving and permitting yourself to do nothing but think about yourself may be unsettling, even uncomfortable. However, an essential part of the transition process is taking inventory. Allow yourself time for self-exploration. 

What was your life before caregiving? What values do you ascribe to? How do you want to live each day? Talk to trusted friends for insights and validation. Think about what's important to you, what makes you laugh or cry, sing and dance. And here is a question that is revealing: What did you give up while caregiving that you are craving to get back?

The "shoulds" from others are loud. "You should try this." "You need to join that." Articles for older adults have lists of "simple" ways to fill your days. I'd hear the "shoulds" and half-heartedly enter joyless activities, ending up feeling hopeless and discontent. I learned to be selective, listening to myself until I hear "I want." Sometimes, I just wanted to be alone.

Moving Through Stages

Renowned expert William Bridges 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.

A "wow factor" in this process comes when you reconnect with parts of your old self and slowly embrace 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. 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.

You may have put a personal passion, hobby or entertainment on hold during caregiving. They are still there waiting for you. Reclaim them. I am working through many puzzles I purchased before Larry's illness as I watch my favorite shows.

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.

Little by little, you create new routines and relationships with optimism and renewed energy. Bridges calls it an "emotional journey" rather than merely physical or situational shifts. This seems so right when coming out of caregiving trauma. It's not about doing things but healing while prioritizing oneself.

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.

Permission to create the space you want to occupy is freeing. Finding the "yes" moments, as TV producer Shonda Rhimes calls them in her book, "The Year of YES," can be daunting or exciting or both. However, re-calibrating your life, reclaiming and defining your transition from caregiving to living is a gift of self-love.

Myrna Marofsky
Myrna Marofsky is a serial entrepreneur, business consultant, proud mother, and loving grandmother. Her husband's dementia diagnosis led her to write a memoir called "To The Last Dance: A Partner's Story of Living and Loving Through Dementia." The book encourages others to move from "caregiving" to Care-LIVING. Through her writing and speaking, she promotes ways older adults can keep on living. Learn more at myrnamarofsky.com. 
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