Guide for Caregivers of Adult Patients on IV Therapy

This guide is written specifically for you — the spouse, partner, parent, adult child, friend, or other person who is providing hands-on support to someone receiving home IV therapy. You are providing an enormous service, and you deserve information, support, and acknowledgment of both your role and your limits.

Your Role as a Caregiver

The care needs of patients on home IV therapy vary widely. Your role may involve:

Being present while the patient self-manages an infusion (for support and as a backup in case of problems)
Managing the actual infusion when the patient cannot do so independently
Performing catheter flushes
Assisting with or monitoring dressing care (though professional dressing changes should remain with trained nurses)
Driving to appointments and lab draws
Managing medication deliveries, storage, and supplies
Being the person who calls for help when something goes wrong
Providing emotional support through a difficult treatment period

Knowing which of these you are being asked to take on — and which require professional nursing — matters. You are not a trained nurse. Your role is to support the patient and maintain safety, not to perform clinical procedures beyond what you have been specifically trained to do.

What You Should Be Trained to Do (if applicable)

If you will be performing any hands-on catheter care tasks, you must be trained by a healthcare professional before doing so:

Flushing the catheter: Includes the correct technique, syringe size, scrubbing the hub, recognizing and responding to resistance
Connecting and disconnecting IV tubing: Proper aseptic technique; clamping Hickman-type catheters
Recognizing and responding to pump alarms: Understanding what each alarm means and the correct first response

You should not perform catheter care tasks that you have not been specifically trained and observed performing. If the home infusion nurse’s teaching was rushed, interrupted, or you felt unprepared, say so before taking over responsibilities: “I’m not confident with this yet. Can we practice once more?”

The Most Important Things You Can Do

1. Know the emergency contacts

Post them visibly in the home. Know when to call the home infusion nurse vs. when to call 911 or go to the ER. The key trigger for ER: fever ≥38°C / 100.4°F with shaking chills in someone with a central catheter.

2. Watch the patient

You may notice changes before they do: the patient looking flushed, seeming unusually confused, shivering, or clutching their arm. Trust your observations and speak up. You are an extra set of eyes.

3. Support consistent adherence

Gently help the patient stay on schedule with infusions, flushes, and lab draws. This is not nagging — it is clinical support. Missed doses and skipped labs can compromise treatment outcomes.

4. Be present for complications

If something goes wrong — pump alarm, leaking line, suspected catheter problem — being present and calm is critical. Review the emergency sections of our specific device guides so you know what to do if a catheter falls out, a connection comes apart, or the patient develops fever.

5. Don’t improvise

If you are unsure whether something is normal or not, call. Do not try to improvise a solution to a catheter problem. The right answer is almost always: call the home infusion nurse.

Specific Caregiver Tasks by Scenario

If the IV pump alarms

Do not panic — most alarms are minor
Read the alarm message on the display
Common responses:
- “Air in line”: Do not disconnect anything; call the home infusion nurse or follow instructions if you have been trained to address air in line
- “Occlusion”: Check for kinked tubing; if no obvious kink, call the nurse; do not force flush
- “Infusion complete”: Infusion has finished; the patient’s catheter still needs to be flushed; call the nurse or follow trained instructions
You can silence a beeping alarm (usually a “silence” or “mute” button) while you address or call about the cause

If the dressing becomes loose or wet

Do not try to replace the dressing yourself with household tape or non-sterile materials
Cover the area loosely with a clean cloth to protect from contamination
Call the home infusion nurse — the dressing must be changed with sterile materials and technique

If the catheter appears to have partially come out

Do not push it back in
Keep the site clean and covered
Call the home infusion nurse immediately; follow their guidance

If the catheter completely falls out

Keep the catheter
Apply gentle pressure to the site
Go to the emergency room
Bring the removed catheter with you

If the patient develops fever and chills during the night

Take the temperature to confirm
Do not wait until morning if temp is ≥38°C / 100.4°F with shaking chills
Call the home infusion after-hours line first; they will advise whether to go to the ER — in most cases, the answer will be yes
Help the patient gather what they need for the ER (ID, medication list, port card)

When the Patient Cannot Self-Advocate

If the patient is cognitively impaired, sedated, or too ill to communicate clearly, you become their medical advocate. Keep with you:

A written list of the patient’s current medications and doses
The type and location of the vascular access device
Any allergies
The primary physician’s name and phone number
An alert card with critical information (see our ER Visit guide for a template)

In the ER or in any new clinical setting, proactively communicate: “They have a [PICC / port] in their [arm/chest]. Their primary doctor is [name]. They are allergic to [list]. They are currently on [medication].”

Setting Realistic Limits

Caregiving is a marathon, not a sprint — especially for lengthy treatment courses. Recognizing your limits is not a failure; it is a prerequisite for sustainable caregiving.

Signs you may be approaching your limit:

Difficulty sleeping even when you have the opportunity
Persistent anxiety, irritability, or low mood
Feeling like you cannot make a mistake — hypervigilance and exhaustion
Resentment (followed by guilt about the resentment)
Neglecting your own medical appointments, social connections, or basic needs
Feeling like there is no one else who could do this

What to do:

Talk to the patient’s social worker — they support families, not just patients
Ask about respite care (temporary relief care) through the home infusion agency or hospital social work department
Reach out to friends and family for specific practical help (meal delivery, driving the patient to appointments)
Take breaks — even 30 minutes away from caregiving can restore perspective
Do not try to absorb all the anxiety of the situation yourself

Caring for Your Own Health

It is very common for caregivers to put their own health on hold during a family member’s illness. This is understandable but harmful.

Keep your own medical appointments
Sleep when you can — being chronically sleep-deprived impairs judgment and increases error risk
Eat adequately — this sounds obvious but caregivers often skip meals
Be honest with your own physician if you are experiencing caregiver stress or burnout symptoms
If you are experiencing depression, anxiety, or burnout that is affecting your functioning, these are treatable conditions — seek support

When to Ask for More Professional Support

You should advocate for increased professional support when:

The patient’s care needs exceed what you can safely provide at home
You are being asked to perform tasks you were not adequately trained for
The patient has frequent complications requiring professional management
You are physically unable to provide the required assistance (due to your own health, physical limitations, or geography)
The treatment is longer or more complex than originally anticipated

It is appropriate to tell the home infusion coordinator or the patient’s care team: “I’m struggling to manage [specific task] safely. Can we adjust the plan to include more professional nursing visits?”

This guide is for educational purposes. Caregiver responsibilities vary by individual situation. Always coordinate with the home infusion team to establish clear and safe role expectations.