When Caregiving Ends
Jan cared for her daughter Elise for 49 years.
Elise was born with a severe developmental disability. She was the center of attention in her family that included her father Kirk, brother Cary and sister Meg.
Elise taught them all how to love and be loved.
When she was in her early seventies, Jan worked with a Gestalt therapist who encouraged role playing to resolve issues within relationships. Jan decided to role play with an imaginary Elise. She started the conversation, “Thank you Elise for all you have taught us. I admire your courage to come into this life, but I am getting older, and I won’t be able to protect you forever.”
Jan switched roles and spoke for Elise. “Mom, I have gotten to be so independent now in my forties. If it gets too difficult, I will find a way to leave.”
Jan was shocked by this message and held it close to her heart.
A year later Elise began to have seizures and was diagnosed with metastatic breast cancer. The treatments for the seizures and cancer took their toll on her vitality.
Jan realized that Elise had found a way to leave.
So, she built a strong team of caregivers, including herself, to surround Elise with all the love and support she needed with the time she had left.
In the midst of Elise’s care, Jan also became a caregiver for her husband, Kirk. He was diagnosed with end-stage prostate cancer that had spread to his bones. He died two months after his diagnosis, and Jan was left depleted and exhausted.
It has been three years since Jan’s caregiving ended.
Recently I asked her how she had cared for herself during this time of adjustment. She said that she first had to give herself permission to sleep. It took a year of sleeping to restore some semblance of her resilience. Jan also told me that the hardest thing for her was losing her purpose in life.
During the second spring after Kirk and Elise’s death, Jan began walking in the foothills with neighbors who had experienced their own losses. They named themselves the Wild Horse Posse.
Together they witnessed every step that spring took as they wandered. They marveled at the variety of greens in the Ponderosa pines, Douglas firs and blue spruces. They observed the ever-changing cascade of wildflowers. They listened intently to the jays and the chickadees as they built their nests in familiar places.
Mother Nature called them all to attention.
On these walkabouts, Jan gathered bark, seeds and stones to build earth altars around her mountain home. These altars brought back memories of Elise and Kirk and the times they had shared together.
They allowed her to grieve and, in time, to heal.
Honoring the Journey Ritual
To honor yourself as a caregiver it is very healing to create earth altars.
Tips From the End to a New Beginning
What you can expect:
Grief: Most likely you will experience a broad range of emotions. Secondary losses like a decrease in income or losing caregiving-related connections can add to your grief.
Sense of relief: It’s very common to feel relieved when the caregiving responsibilities are over and your loved one is no longer suffering. Don’t beat yourself up over this.
Guilt: Feeling guilty about the times you were impatient, frustrated or unkind is normal. Remind yourself you are human and imperfect. Focus on all you did well!
Lack of purpose: Caregiving can provide a sense of purpose and meaning. After a loss, feeling lost and unsure of who you are or what’s next is a part of the grief process.
Steps to help you move forward:
Grieve: Allow yourself to experience all of your emotions. Share memories, journal, or create personal rituals like a morning altar for support. Connect with others by joining a grief group.
Re-charge: Start with self-care by exercising, reflecting, resting and nurturing yourself.
Get social: Return to church. Join an exercise class. Grab coffee with someone who can share in your experience. Find ways to build new communities.
Invest in you: Re-engage with things you once enjoyed. Try some new things. Consider volunteering when the time is right. Seek meaning in new areas of your life.
Resources
Center for Loss and Transition: Grieving a Loss
Rebuilding Your Life after Caregiving
A Deep Dive Into Secondary Loss
Morning Altars by Day Schilkret