Harriet from Minnesota

In October of 2013 my husband, C. John, suffered an aortic dissection. I drove him to the hospital emergency room. The medical team started working on him right away and, after a quick assessment, a nurse turned to me and mouthed the words "just in time." My husband was bleeding to death and the team pumped blood into him almost as fast as he was losing it. Unfortunately, the team couldn't keep up with the blood loss and my husband had three emergency operations. During the third one he suffered a spinal cord injury that paralyzed his legs. Looking back now, I see that I became my husband's advocate and family caregiver the night I drove him to the hospital. After his last surgery my husband was put in an artificial coma to foster healing, and spent a month in the Intensive Care Unit. I visited him three times a day, at breakfast time, lunch time, and dinner time. I chose these times to help my husband track time. When I visited him the nurse would cut back on the anesthesia so my husband could hear me. I said the same three sentences: You are alive. You are doing well. I love you. In January of 2014, my husband was transferred to a nursing home for follow-up care. His wound, as health care team members called it, was so deep I could see his ribs. The nursing home agreed to supervise treatment with a wound vacuum. Slow as it was, the wound vac worked, and his wound began to heal. I visited him three times a day, moved us out of the home we had lived in for 20+ years, and after an exhausting and disappointing search for housing, built a wheelchair-accessible town home, and maintained my writing career. This is my 19th year of caregiving and I thought past experience, nine years as my mother's family caregiver, seven years as my twin grandchildren's guardian/caregiver (their parents, including our daughter, who was their mother, were killed in separate car crashes) would be helpful. It was, but I'd never cared for a disabled loved one, had to learn safe lifting techniques, how to help with self-catheterization, and stomach care. Some days I feel like I'm earning a nursing degree the hard way, yet good has come from tragedy. With help of Mayo Clinic therapists, my husband learned to stand, stand and pivot, and can walk about 40 steps with a walker. More good has come too. A week after my husband was dismissed to my care, I started writing a series for family caregivers. These books--The Family Caregiver's Guide, Affirmations for Family Caregivers, A Journal for Family Caregivers, The Family Caregiver's Cookbook, are published by WriteLife. I also give caregiving talks and workshops.

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