01/08/2001

From the Heart of a Caregiver

Circumstances often dictate life changes that we neither plan nor expect. "I never made a conscious decision to become a caregiver," Susan Bria wrote in The Heart of a Caregiver. "It just happened gradually, first with my mother's three sisters and then with my mother herself."

After her mother had goiter surgery at the age of 90, Bria arranged for full-time care when she couldn't be at home with her, care that made it possible for her mother to die peacefully at home, surrounded by family, at age 98.

The youngest in a family of daughters, Susan was born when her mother, Susie Spezzano Bria (1889-1998) was forty years old and her father, Emil, was fifty. When her father became seriously ill at seventy-five, neither she, her mother, nor her sisters knew how to answer his questions about his condition, so they reassured him that he would be fine. Her father, who was a pharmacist, knew better. Later Bria wished that she had been more honest with him during his few remaining days. If she had been, he could have talked about his life and death, shed needed tears and said good-bye. She vowed to herself that she would do better by the next person. So it was natural for her to offer support as each of her mother's three single sisters faced serious illness and death.

Over the ensuing years Bria read several books on the subject (listed in the appendix of the book.) Elisabeth Kübler-Ross' book, "On Death and Dying," strongly influenced her, as did Kübler-Ross' public appearance in Bria's hometown, during which she discussed the content and meaning of conversations with people during their dying days.

"Ultimately (the manner of) my father's death," Bria writes, "gave me the determination to take the steps necessary to give my mother the best life and death we possibly could and let nothing stand in the way of that goal."

The Heart of a Caregiver takes the reader through the practicalities associated with home care of an elderly, ailing relative. Topics such as finances, nursing care, insurance issues, and available state and federal support programs are covered in constructive detail. Bria offers valuable advice about how to set up the environment to maximize independence and general tips for organization and record-keeping, such as:

• Stay informed about available services and requirements to qualify.

• Buy notebooks and post-it notes for the home and to keep with you for keeping track of appointments, unanswered questions, medications and other details

• Keep copies of all medical records in one place

• Ask questions of medical personnel and continue asking until you understand the answers

• Balance work, recreation and care-giving

• Establish support from friends, family and spiritual community (if you belong to one)

• Read what others have to say about the experience

• Join a support group - you don't have to go it alone

Home care is not the choice for every family. Bria was the logical person in her family to step into the care-giving role, because she had not married or started a family of her own. But even so, she had responsibilities to her students at the high school where she taught English full-time. She learned how to balance career demands, self-care and caregiving, because that is what she and her mother wanted. By talking openly with each other, they were able to create as peaceful an ending to her life as possible.

Bria felt especially thankful that she could arrange for medical care in the home. Further surgery or other invasive procedures would have made it more difficult or impossible for her mother to remain at home. Bria, her sisters and her mother made decisions together about what medical interventions they would accept to keep her most comfortable. A mother to the end, shortly before she died, Mrs. Bria said to the family gathered around her, "Don't worry about me." "Don't worry about us either, Mom," they replied. "We're going to be all right."

When the end came, Bria allowed herself time to grieve. It takes several months to adjust to the loss of someone so close to you.

The book closes with a retrospective about Bria's growth in understanding about life and death. "Life continues and the bonds of love are never broken," she writes. "We all have reason to rejoice with my father and mother and the rest of my family who has gone on ahead in their reuniting. We may all take from these events the valuable lessons life offers to each of us."

Bria pays tribute to her mother's life by the way she leads her own and in this moving account of their last years together.

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The Heart of a Caregiver by Susan Bria
Published in December, 2000
Weidner Publishing Group
490 Cornwall Ave.
Cheshire, CT 06410

To order, call: 800-783-9654.

Brief biography of the author: Susan Bria grew up in Waterbury, and completed a BA, MA and a Sixth Year Certificate in Educational Administration at the University of Connecticut. A dedicated teacher, she taught English at Naugatuck High School for 35 years. She attributes her desire to become an English teacher to having a teacher in high school who taught her to see the relevance between literature and life. She retired in 1998 to devote time to writing, travel and other interests. Bria serves as a volunteer at the National Family Caregivers' Association (800-896-3650) as their Connecticut representative.

"I don't consider this book, which deals with the deaths of five people a melancholy book," says Bria, "because it tells about many happy memories, some funny situations and, of course, many positive lessons. Ultimately it is a book about loving one another, survival and spiritual and emotional growth. What I experienced is not unique; it is what every other family caregiver experiences, no matter what their individual circumstances."

Please send questions or comments to bbruno@snet.net.