Javascript is not enabled.

Javascript must be enabled to use this site. Please enable Javascript in your browser and try again.

Skip to content
Content starts here
CLOSE ×
Search
CLOSE ×
Search
Leaving AARP.org Website

You are now leaving AARP.org and going to a website that is not operated by AARP. A different privacy policy and terms of service will apply.

Caregivers Learning on the Job: Handling Complex Medical Tasks

Family caregivers increasingly shoulder more responsibilities with limited training


Debbi Harris, with her son Joshua
Debbi Harris, with her son Joshua, has become skilled at handling many medical tasks that most people only witness in a hospital.
Nate Ryan

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.”​​

a mother is caring for her son
Left, Josh in his bedroom. Right, Debbi administering medicine through a syringe.
Nate Ryan

Growing complexity of caregiving

Join Our Fight for Caregivers

Here’s what you can do to support family caregivers:

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.

a mother is talking with her sons nurse
Debbi is talking to a nurse with Joshua's care team at Gillette Children's Hospital in St. Paul, Minnesota. Joshua is transferred out of his bed using a mechanical lift.
Nate Ryan

Hands-on caregiving: Ask, watch and practice

Why should caregivers learn tasks that require training and are usually done by medical professionals in a medical setting? According to Cornwell, being able to handle routine procedures, such as clearing or reinserting a feeding tube when it becomes obstructed or dislodged, can help families avoid unnecessary emergency room visits. “I always teach my caregivers how to change feeding tubes during routine changes so in the event an emergent replacement is needed, they can call and I can take them through it,” he says.

Getting comfortable handling medical tasks takes time and practice, says psychologist and family caregiver Merle Griff, author of Solace in the Storm. Griff learned that the key to caring safely and compassionately at home for her mom, and eventually her husband, required her to be extra proactive. That means asking questions until you understand how to do a medical task, requesting clear instructions and supplies well before discharge, carefully observing demonstrations and then practicing each skill under professional supervision.

“Caregivers don’t have to be perfect, but we do have to be prepared. When we advocate for ourselves and our loved ones this way, we build confidence, reduce mistakes and give our family members the dignity and comfort they deserve,” says Griff, CEO and founder of SarahCare Adult Day Care Centers in Canton, Ohio.

Many caregivers struggle with the understandable fear of accidentally causing harm. “What held me back wasn’t the complexity — it was the fear of doing it wrong and making things worse. I want caregivers to know it’s okay to go very slowly as you learn. No one’s standing there with a clipboard demanding perfection,” says Peter Rosenberger, a caregiver to his wife, Gracie, for nearly 40 years through extreme medical challenges, including amputations, chronic pain and 98 surgeries. “I went to music school, not medical school, but I’m willing to take on more challenging tasks if that means keeping her out of the emergency room, which can create more pain and more challenges for her.”​

a mother caring for her son
Debbi makes time for Joshua's medical needs, while nurturing his emotional well-being.
Nate Ryan

Key ways to tackle complex medical tasks​

Caregivers aren’t meant to replace health care professionals, yet many find themselves acting as a stopgap — managing wound care, catheters and ventilators and other complex tasks in between home health visits by health care professionals. “With people living longer with complex conditions, family caregivers have become amateur frontline field medics in their own homes, handling tasks that once belonged only in hospitals,” says Rosenberger. “It’s an enormous responsibility for people who never trained for this, and their ability to adapt is extraordinary.”

Because this can feel overwhelming, experts recommend a few practical steps to help caregivers build confidence, stay safe and provide the best possible support.​

1. Learn as much as you can

Family caregivers can strengthen their ability to advocate by becoming true experts in their loved one’s conditions. Take the time to understand diagnoses, treatments, potential complications and even the language clinicians use. “The more you know, the more confidently you can frame questions, spot inconsistencies and anticipate needs,” says Harris. She has learned how to titrate oxygen, troubleshoot feeding pumps, mix and blend specialized formulas and administer medications with precision. She monitors blood pressure before each scheduled dose, checks for signs of infection or shunt malfunction, and knows how to respond when Joshua’s heart rate plummets or spikes into dangerous territory.

Alongside this learning, she emphasizes the importance of recordkeeping. Track every medication and dosage, vital signs, pain levels, food and fluid intake, mood changes and equipment settings or malfunctions. Document appointments, test results and conversations with health care providers. “Over time, these details reveal trends and patterns that can help clinicians make better decisions and help you advocate more effectively,” adds Harris.​

2. Be assertive, ask questions

Many caregivers wait until discharge day to learn what they’ll need to do at home, but by then staff are rushed and teaching time is limited. Start asking questions as soon as you know your loved one will need ongoing care. Be respectfully assertive: Ask the health care professional to explain each step of a procedure, why it matters and what could go wrong. “Take your time. If a doctor or nurse pressures you to move faster than you’re comfortable with, it’s OK to push back,” says Rosenberger. “It’s normal to feel nervous or unqualified — give yourself permission to go at your own pace.”​

3. Watch closely and video-record

Observing a nurse or therapist as they perform the procedure on your loved one gives you an accurate picture of what to expect. Griff strongly recommends video-recording these demonstrations on your phone so you can replay them later. Ask the professional to “talk through” the process on camera so the audio becomes a built-in voice-over. This helps bridge the inevitable gap between what you think you’ve learned and what you actually remember once you’re on your own at home.​

Family Caregiving How-To Video Series​

AARP offers a wide range of how-to videos to help family caregivers learn essential skills, from pain management and wound care to operating specialized equipment such as oxygen tanks and nebulizers. Watch, learn and take notes.

4. Practice under supervision

Before your loved one is discharged, insist on practicing the procedure yourself, ideally more than once, while a professional observes and gives real-time feedback. Griff says this step built her confidence, reassured her husband and mother, and gave the professionals peace of mind that she would perform the tasks safely at home. Practicing under supervision also helps you spot potential obstacles before you’re alone, especially with medical equipment.​

5. Call for guidance, not just emergencies

Many caregivers assume they should call a health care provider only in a true emergency, but guidance is available for routine issues. “If a feeding tube becomes clogged, a trach collar needs adjustment or any equipment isn’t working properly, reach out to your provider right away,” says Cornwell. He adds that often a nurse or doctor can walk you through the steps over the phone or via video, helping you resolve the problem safely at home. This approach can prevent unnecessary trips to the emergency room, reduce stress for both you and your loved one and ensure that minor issues don’t become major complications.​

6. Understand where to purchase equipment

Griff emphasized that caregivers need to plan ahead for supplies and understand how Medicare coverage works. For expensive or specialized equipment, like ventilator, feeding tube or tracheostomy supplies, you often must go through a durable medical equipment (DME) company approved by Medicare, not just order online through Amazon. Hospitals typically make the first call, but caregivers should follow up to ensure the right equipment is provided. “Being proactive about setting up accounts with durable medical equipment suppliers and confirming delivery details can prevent delays, gaps in care and unnecessary hospital visits,” says Griff.​

7. Know your limits, but don’t underestimate yourself​

It’s natural for family caregivers to feel intimidated by medical tasks they’ve never performed, especially those once considered strictly “nursing” duties. But with thorough instruction, written guides and hands-on practice under supervision, most caregivers can safely learn procedures such as changing feeding tubes, giving injections, and handling catheters and tracheostomies. At the same time, knowing your limits is just as important as stretching your abilities. “If a task feels unsafe or unclear, don’t guess; instead, reach out to your health care team for clarification or help,” says Cornwell. “Balancing caution with a willingness to learn allows caregivers to prevent complications, reduce hospital visits and keep their loved ones more comfortable at home.”

Unlock Access to AARP Members Edition

Join AARP to Continue

Already a Member?