caregiver-deep-in-thoughtTo find the way, close your eyes, listen closely, and attend with your heart. ~ Unknown

I can honestly say that throughout the course of my mom’s lengthy illness, I had no idea how much of a mental and emotional toll it was taking. I suppose I didn’t have time to think much about what my post-caregiving life would be like, but when it comes right down to it, I’m not the same person I was BA (before Alzheimer’s). Suddenly, mundane tasks are more painful than ever, and I ache to do something that makes a real difference in the world.

This isn’t uncommon. Many former caregivers find themselves on a path of self-discovery. Some, like Lorraine Ruggieri, even make colossal career changes. Ruggieri, once a fashion designer, found herself going back to school at Hunter College School of Social Work. Today, she’s a social worker specializing in gerontology and family practice.

Who Is That Person I See In The Mirror?

Caring for a chronically or terminally ill loved one rocks you to your core. Once it’s over, you might be left wondering what you’re supposed to be doing, and perhaps even who you are. Outward appearance can be misleading; you still go about your daily routine; you pay the bills, mow the lawn, and have dinner with friends, but your entire outlook is different.

I found it’s really in the quiet moments that your purpose is revealed and you start to understand this strange, new existence. Although it may take some time, caregivers often begin to see a clear picture of what they’re meant to do. Many times, they undergo a strong shift in priorities, gaining an intense understanding of life’s fragility.

Life is Short

When asked about life after caregiving, writer, bereavement counselor, and former caregiver Elaine Mansfield told me she now feels a “stronger sense of the impermanence of life.”

Elaine said that during her mother’s ten years with dementia and her husband’s two year battle with cancer, her outlook changed as she began “looking for the small positive moments in every hard situation—a kind touch, a warm smile, a nurse with a warm blanket or fresh water, a friend’s phone call, the blue sky, a bird call.”

“I do this still,” she explained. “I don’t want to miss any of the good parts of life while moaning about the difficulties. I’ve learned I can feel it all—the positive and difficulties—together.”

Within three months of her husband’s passing, Elaine began to turn years of detailed journals into stories, which ultimately became the manuscript for her forthcoming book.

“Creativity was an essential part of my healing process—especially writing about what happened before Vic’s death and then about finding my way through grief while searching for a new life,” Elaine said.

Support, Share, Teach, Advocate

Martha Stettinius, author of Inside the Dementia Epidemic: A Daughter’s Memoir, also found solace in writing. She set out to help people understand they can still have a profound and tender relationship with a loved one living with dementia. Martha explained that she felt a new closeness with her mother during the illness saying, “For me, dementia caregiving was not a ‘long good-bye’ as it’s often called, but a ‘long hello.’”

Both of these former caregivers now openly share their stories in an effort to provide comfort to others. Martha remains a very active caregiver advocate, serving as a volunteer representative for the Caregiver Action Network and a dementia care expert for eCareDiary.com.  She frequently speaks to groups on caregiver topics as well.

Just nine months after losing her husband, Elaine signed on as a volunteer in the office of her local hospice organization. She subsequently attended hospice and bereavement training, and now facilitates support groups for women who have lost spouses or partners. Elaine points out her involvement with others who are grieving is helpful to her as well, “It’s good for others … but it’s also a support for me to have a place to discuss grief, love, and the challenges of our new lives.”

Purpose Brings Comfort

Strong, resilient, and compassionate, Martha and Elaine are living life with grace and courage. These women beautifully illustrate the ability to transform sadness and loss into something meaningful. This doesn’t at all negate the sadness, but if we can create something positive from a tragic situation, perhaps all of the suffering wasn’t for naught. For me, that’s a very comforting notion.

We’d love to hear about your own transformation! Leave a comment below to share your thoughts.

 

 

 

 

 

 

 

2 Comments

  1. Elaine Mansfield

    Thank you for this lovely article, Ann. This sentence of yours captures the core of the matter: “This doesn’t at all negate the sadness, but if we can create something positive from a tragic situation, perhaps all of the suffering wasn’t for naught.” I’m honored that you asked me about my experience and included my thoughts in this piece. Thank you for all the important and essential advocacy and writing you do on behalf of Alzheimer’s, aging, and caregivers.
    With gratitude, Elaine

  2. Ann Napoletan

    Thanks for your valuable insight, Elaine.

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