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Debbi Harris has become, by necessity, skilled at handling many medical tasks that most people witness only in a hospital. Her son Joshua, 32, was born with severe disabilities and depends on round-the-clock, highly technical care. For Harris, 67, that has meant mastering a dizzying list of medical tasks that rival what an ICU nurse performs daily.
Joshua is ventilator-dependent and lives with cerebral palsy, spastic quadriparesis and the effects of a severe brain hemorrhage from birth. He has a tracheostomy to help him breathe, a feeding system that runs nutrition and medication through a tube and an implanted pump that delivers continuous pain medication to reduce aching spasticity. His care requires constant monitoring of oxygen levels, ventilator settings and heart rate, along with managing the life-threatening swings of autonomic dysfunction, where even a slight change in temperature or pain can send his body into crisis.
Harris and her husband, Victor, maintain spreadsheets tracking medications, supplies and schedules. They oversee a small team of nurses and caregivers, including their two older sons, Nicholas and Jonathan, who have reorganized their own lives to make Joshua’s care sustainable.
Over three decades, Harris has become the hub of communication between multiple specialists, coordinated with health insurance plans and even rewritten care plans when agencies fell short. “This is just regular life,” she says matter-of-factly. “Josh can’t ever be left alone, not for a single minute. It’s 24/7. But we’ve learned how to do it — because we have to.”

Growing complexity of caregiving
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The Harris family is not alone. According to “Caregiving in the US 2025,” a joint report by AARP and the National Alliance for Caregiving, the intensity and complexity of caregiving is escalating. Forty-four percent of caregivers report providing high-intensity care, and more than half (55 percent) perform complex medical or nursing tasks, such as managing catheters, giving injections or monitoring vital signs. However, only 22 percent of caregivers report receiving any training, and when it is available, it’s often provided by nurses or doctors. Caregivers today are often responsible for handling medical equipment and managing medical tasks such as:
- Catheters
- Diabetic care
- Feeding tubes
- Home infusion therapy (IV therapy)
- Injectable medicines
- Nebulizers for people with respiratory conditions
- Oxygen therapy
- Prosthetics
- Tracheostomies for breathing
- Wound care
- Ventilator support
As care shifts out of hospitals and rehabilitation centers, patients are being discharged sooner and with higher medical needs, leaving families to handle procedures that nurses once performed. Cost and coverage limits, such as Medicare’s cap on paid rehab days, compound the problem by sending patients home before caregivers are fully prepared.
“At the same time, a shortage of home health nurses and aides experienced in advanced tasks like tracheostomies and catheters, and rehab centers waiting until the last minute to train caregivers, means many caregivers receive little or no professional support before taking on these responsibilities,” says Dr. Thomas Cornwell, a family physician and executive chairman at the Home Centered Care Institute, who has provided house calls for thousands of patients over the years in the Chicago suburbs and across the country.
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