karen steadman

Deborah Spencer

Faces of Caregiving – United States

When Deborah Spencer’s daughter Dominique was diagnosed with severe autism, intellectual and developmental disabilities at the age of 4, she did not realize the ways that it would drastically turn her life upside down. Now that Dominique is 21, Deborah says that the journey has been difficult and challenging, but also a blessing.

You never really know what you can handle until you are forced to handle it.

Dominique’s disability requires Deborah’s complete care and supervision. While there are some things Dominque can do independently, she is not capable of living on her own, because she does not have the cognitive skills to take care of her needs or make decisions. She also has some behavioral challenges, which makes being her caregiver a monumental physical and emotional task.

“As a primary caregiver, being free to live my life the way I imagined is not my reality,” Deborah said. “While a majority of my friends and family are experiencing the prom, graduation, college visits, teenage driving, wedding planning, empty nesting, and the like, my life is filled with doctor and therapy appointments and bathing, dressing, and caring for an adult for what sometimes feels like a 24/7 job.”

“Nothing goes without planning in our lives,” Deborah continued.

Deborah is up front about the struggles of caregiving and the sense of isolation that comes with being in a full-time caregiver role.

“There are times when I want to quit, give up, and just walk away from it all,” she said. “Most of the people in my life really don’t know what I face on a daily basis and have no idea.”

Still, she says that despite the challenges, there are blessings to be found in her journey. Approximately three years ago, she launched a nonprofit – Dominique Cares – to help families of individuals with disabilities. A year and a half later, she retired after 31 years in corporate America to run the organization full-time.

“I have been blessed with awesome support to aid me in running the organization,” she said. “I have been able to give not only resources to families but hope and encouragement that there is life after the diagnosis. That life may not look like someone else’s, but there is purpose in our pain which can fuel us to accomplish greatness.”

“Our personal lives do not have to end because we are choosing to be a caregiver”

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