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When a Crisis Turns Into Long-distance Caregiving

Becoming a long-distance caregiver presents challenges and solutions.

En español | By now, I can find the intensive care unit on the second floor of Denver's Exempla Good Samaritan Medical Center with my eyes closed. I've flown in from Texas, and my stepmother and I have made the trip into the unit's linoleum-floored starkness regularly since last summer. We're there to visit my father, an avid bicyclist who crossed the United States at age 68. His luck soured at 76, when a jogger jumped in front of him on a Boulder, Colorado, bike path.

His right shoulder was mangled, his right hip shattered. A Level III trauma center in Denver reconstructed the hip, but three weeks later we learned that the crash that cracked Dad's helmet also broke open blood vessels that were slowly filling the space around his brain. Later, at a rehabilitation center, he began losing the ability to talk and use his limbs. Surgery relieved the pressure on his brain and reversed the stroke, but he needed another craniotomy two months later when the bleeding continued.

Medical care gave Dad extra time. And the months spent in hospitals taught my family about helping a loved one through a medical crisis.

Handling the Initial Crisis
You might want to take charge when a loved one seems seriously ill, but don't: Call 911 instead. "If possible, call from a landline—and keep the landline open in case they have to call back for more specific directions," says Juan Fitz, M.D., assistant medical director of the emergency department at Covenant Medical Center in Lubbock, Texas. Waiting for an ambulance prevents car accidents and gives time to gather information about the injury and your loved one's medications, allergies, medical history, and physicians.

Fitz advises that, once at the emergency room, you should become the sole phone contact for family members and bond with a nurse. Then, if your loved one is in pain or has other needs, you'll have the nurse's ear. "We're there to help," Fitz explains, "but you know your family member better than we do."

Little Things Matter
Connecting with medical staff also matters if your loved one is admitted to a hospital or rehab center. Being a patient involves constant sleep interruptions, such as when Dad underwent brain imaging at 3 a.m. So we asked staff to close the curtain in his room, minimize conversations unrelated to his care, and give him time to nap.

We also stayed at his bedside, making sure Dad kept off his back, which could put pressure on his healing skull, and didn't stand too soon after hip surgery. My stepmom kept a log of medical updates. Fitz suggests also monitoring drugs received: "In a respectful way, always ask what medication they are going to be given, because errors do occur."

Sharing the Caring
Most important was for us to be there: providing books, conversation, and other distractions. And to be there for each other, standing watch if one of us needed fresh air and reminding each other about tasks that the stress had erased from our memories.

We commiserated about Dad's brush with pneumonia and worse. We unloaded our feelings on friends. And my agnostic stepmother gained comfort from a hospital chaplain who sought her out and simply listened. "We always want to help people through the framework of meaning that they have, whether it's religious or not," says the Reverend Uwe C. Scharf, director of the Pastoral Care Department at The Johns Hopkins Hospital in Baltimore.

The crisis has passed, but any day could have been Dad's last, so every moment mattered. And we all gained a greater appreciation of one another by surviving this difficult time and sharing more deeply than ever before in each other's lives.

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