Directing Care: The Ultimate Caregiver’s Guide

Caring for a loved one with complex medical needs is one of the most demanding roles a person can take on. It is also one of the most meaningful. Whether you’re new to this journey or have been navigating it for years, it’s normal to feel overwhelmed by the sheer amount of information, equipment, and daily tasks involved. This guide is meant to walk alongside you: to explain the “why” behind common aspects of locked-in syndrome care, offer practical guidance, and remind you that your own wellbeing matters just as much as your loved one’s.

You don’t have to become a medical expert overnight. You just have to take things one step and one day at a time, and know that reaching out for backup when something is beyond you isn’t a failure. It’s part of doing this well.

Respiratory Care

If your loved one cannot breathe fully on their own, they may rely on equipment such as a ventilator, BiPAP, CPAP, or supplemental oxygen. It’s completely understandable if these machines feel intimidating, especially if you’re the only person responsible for them. Over time, most caregivers find that the routines become second nature, but it takes deliberate practice to get there when there’s no one standing beside you the first few times.

What to know and do:

• Learn the equipment before you need it. Ask the prescribing doctor, durable medical equipment (DME) company, or hospital discharge team to walk you through setup, alarms, and troubleshooting before you’re on your own with it. Ask for written instructions or a demonstration video if one exists. Most DME suppliers have a phone line for equipment problems; save that number in your phone.
• Cleaning and replacing supplies. Filters, tubing, and masks need regular cleaning or replacement to prevent infection and equipment failure. Set phone reminders for replacement schedules so you aren’t relying on memory alone.
• Humidification. Check water levels and clean the humidifier chamber regularly to prevent buildup and infection.
• Suctioning. If your loved one has a tracheostomy or difficulty clearing secretions, ask for hands-on training before discharge, and keep a laminated step-by-step card near the equipment for moments when your mind goes blank under stress; it happens to everyone.
• Know your loved one’s “normal.” Changes in skin color, breathing rate, or alertness can signal a problem. Ask their doctor in advance: what does an emergency look like for this specific person, and at what point should I call 911 versus their doctor’s office? Write the answer down somewhere you can find it quickly.

If you don’t currently have a home health nurse, ask your loved one’s doctor’s office whether one can be arranged, even for periodic check-ins; your insurance plan may cover intermittent visits even without full-time home care.

PEG Tubes

A PEG (percutaneous endoscopic gastrostomy) tube is a feeding tube placed directly into the stomach, used when someone can’t safely eat or get enough nutrition by mouth. Managing it alone means you’re the one watching for problems every single day, so it helps to build a simple routine you can do on autopilot.

Key aspects of PEG tube care:

• Site care. Clean the skin around the insertion site daily and check for redness, swelling, drainage, or odor, which are all signs of possible infection. Take a phone photo of how the site normally looks so you have something to compare against if you’re ever unsure whether something has changed.
• Feeding schedule. Follow the prescribed timing and formula amount. Set alarms if feeds are scheduled rather than continuous, especially during the parts of the day when you’re busiest or most tired.
• Flushing the tube. Flush with water before and after feeds and medications to prevent clogs.
• Positioning. Keep your loved one’s head elevated during and after feeds to reduce the risk of aspiration.
• Checking tube placement. Confirm the tube hasn’t shifted before each feed.

Keep the number for your loved one’s gastroenterologist or the clinic that placed the tube somewhere visible, such as on the fridge or saved as a favorite contact, so you’re not searching for it during a stressful moment. Many tube-feeding companies also have 24/7 support lines for troubleshooting clogs or equipment issues, which can be a real lifeline when you’re managing this without backup.

Preventing Bedsores

Bedsores, or pressure ulcers, develop when constant pressure cuts off blood flow to the skin, often over bony areas like the tailbone, heels, hips, or elbows. They can develop within just a few hours of unrelieved pressure, so consistency in prevention matters enormously, especially when you’re the only one keeping watch.

Ways to help protect your loved one’s skin:

• Reposition on a schedule you can actually keep. Every two hours is the general guideline, but if that’s not realistic given everything else on your plate, talk to a doctor about the safest schedule for your specific situation, and consider a phone alarm or a simple written log to keep yourself on track without having to rely on memory.
• Do a daily skin check, ideally at the same time each day (like during a wash or dressing change), looking for redness, warmth, or breaks in the skin. Catching an early-stage sore quickly makes a significant difference in how easily it heals.
• Keep skin clean and dry. Moisture from sweat or incontinence weakens skin and makes it more prone to breakdown.
• Use supportive surfaces. Pressure-relieving mattresses and cushions can meaningfully reduce your workload by lowering how often manual repositioning is needed; ask your loved one’s doctor if one can be prescribed or covered by insurance.
• Support nutrition and hydration, which help skin stay resilient. If cooking and meal planning feels like one task too many, even simple, consistent options (protein-rich snacks and adequate fluids) can help.

If you do notice a sore developing, call your loved one’s doctor promptly rather than trying to manage it alone; untreated pressure sores can worsen quickly, and this is a moment where outside medical input can genuinely change the outcome.

Preventing Urinary Tract Infections

Urinary tract infections (UTIs) are common in people with limited mobility, catheters, or incomplete bladder emptying. Symptoms can be subtle, especially in a loved one who has trouble communicating, which means you may be the only person positioned to notice something’s off.

You can help reduce the risk of UTIs through:

• Proper hygiene. Gentle, thorough cleaning of the genital area, especially after bowel movements, helps prevent bacteria from entering the urinary tract.
• Catheter care, if applicable. Keep the collection bag below the level of the bladder, avoid kinks in the tubing, and follow a consistent cleaning routine. Ask your loved one’s doctor’s office for written care instructions if you weren’t given any, or if it’s been a while since you reviewed them.
• Hydration, as approved by their doctor, helps flush bacteria from the urinary tract.
• Knowing the warning signs is crucial, since you’re the one who’ll catch them first: cloudy or strong-smelling urine, fever, confusion, or sudden agitation can all signal a UTI. Sudden confusion in particular is a common and easy-to-miss sign in older adults, so it’s worth remembering even though it doesn’t look like a typical “infection” symptom.
• Keep a simple log of bathroom habits or catheter changes on your phone or a notepad. It doesn’t need to be elaborate, just enough that you can tell a doctor “this changed three days ago” instead of relying on memory during a phone call.

If you notice these warning signs, call the doctor’s office rather than waiting to see if it resolves; UTIs can escalate quickly, and you don’t need anyone else’s permission to make that call.

Physical and Occupational Therapy

Physical therapy (PT) and occupational therapy (OT) support your loved one’s strength, mobility, and independence. However, if you don’t have a therapist coming to the home, you can still do a great deal on your own with the right guidance upfront.

What to know and do:

• Ask for a one-time consult, even without ongoing visits. Insurance plans may cover an initial PT/OT evaluation and a home exercise plan, even if regular visits aren’t in the cards. Ask your loved one’s doctor for a referral, and ask the therapist to write down (or record on your phone) the specific exercises and techniques so you can repeat them correctly on your own.
• Learn safe transfer and positioning techniques before you need them daily. Improper transfers are one of the most common ways caregivers injure their own backs; a training regimen focused on body mechanics can protect you for years of caregiving ahead.
• Keep movement consistent, even in small doses. Passive range-of-motion exercises for a loved one who can’t move independently, such as moving their arms, legs, and joints gently through their range a few times a day, can meaningfully reduce complications like contractures (permanent muscle or joint tightening) and pressure sores, even without a formal therapy visit each week.
• Write yourself a simple routine. A short, repeatable checklist (such as which joints, how many repetitions, and how often) takes the mental load off remembering everything correctly during a hard day.

If something changes, if there is new pain, new stiffness, a fall, or a decline in mobility, that’s a good moment to call the doctor and ask whether another PT/OT evaluation is warranted, even if it’s been a while since the last one.

Were You a Victim of Medical Negligence?

If a delayed diagnosis led to permanent harm, you may be entitled to compensation. Speak with our legal team today.

Start My Free Case Review

A Note to Caregivers

If no one has said this to you recently: thank you. Doing this alone takes a particular kind of strength. What you’re doing matters more than you may realize, even on the days it doesn’t feel like it.

It can be easy, when you’re the only one carrying this, to let your own needs quietly slide to the bottom of the list—or off the list entirely. But caring for your own mental health isn’t a luxury here, and it isn’t something to get to “once things calm down.” It’s part of the job. You cannot pour from an empty cup. Your ability to show up for your loved one tomorrow and the days after that depends on you tending to your own needs today, even in small ways.

Since you may not have others physically in the home to lean on, that support may need to come from elsewhere:

• Caregiver support groups: Many meet online or by phone, which means you don’t have to leave your loved one to attend. Hearing from others managing similar situations solo can remind you that you’re not the only one, even when it feels that way.
• Respite care: Short-term relief care, sometimes just a few hours, can be arranged even for caregivers without an existing care team. Ask your loved one’s doctor or local area agency on aging about respite options in your area.
• A therapist or counselor, many of whom offer phone or video sessions, can fit time around a caregiving schedule.
• Small, protected pockets of time, even 15 minutes to sit, breathe, meditate, or step outside without guilt, can make a world of difference.
• Stay connected to a friend, family member, or community, even briefly, so caregiving isn’t the only thing defining your days.
• Rely on friends and family, if possible. See if a friend or family member can sit with your loved one for an hour or two while you grab a coffee or lunch.

Burnout is not a sign that you’re failing; it’s a sign that you’ve been carrying a great deal, largely by yourself, for a long time. Give yourself the same compassion you give so freely to the person you’re caring for.

Need a moment to reset? One of our clients, Cecelia Williams, created a 7-Day Reset for Caregivers that you can review whenever you feel the need.

You can also get a copy of our book, Locked-In Syndrome: A Guide for Families and Caregivers, to reference if you need some support or an answer to a burning question.

And if you have questions about how your loved one’s locked-in syndrome occurred, a locked-in syndrome lawyer from Newsome Law can help you get answers.

Read more about Rich Newsome

Rich Newsome

Catastrophic Injury Locked-In Syndrome Attorney

Rich Newsome is a dedicated attorney specializing in catastrophic injury and medical malpractice cases. With over 25 years of experience, she is committed to advocating for victims and their families, ensuring they receive the justice and compensation they deserve.