A Realistic Guide for Family Caregivers During Home Health

Nobody really prepares you for being a family caregiver. One day your parent or spouse is fine, and then suddenly you're learning to change wound dressings, manage medications, and argue with insurance companies - all while trying to maintain your own life.

I've been a medical social worker for 25 years, mostly in home health. I've watched families navigate this journey thousands of times. Here's what I wish someone had told them at the start.

Accept That This Is Hard

Caregiving is exhausting - physically, emotionally, and logistically. If you're finding it difficult, that doesn't mean you're doing it wrong. It means you're human.

You might feel resentful sometimes. You might wish this wasn't happening. You might get frustrated with the person you're caring for, even though you love them. All of this is normal.

Don't add guilt to your burden by expecting yourself to handle everything with grace and positivity. This is legitimately hard, and it's okay to acknowledge that.

You're Part of the Care Team

When home health professionals come to the house, they're not replacing you - they're working with you. And you have something they don't: you know your family member. You know what's normal for them, you notice subtle changes they might miss, and you're there every day.

Speak up during visits. Tell the nurse if you've noticed something different. Ask the physical therapist to show you how to help safely. Get the occupational therapist's advice on what equipment might make things easier.

The clinicians are with your family member for a few hours a week. You're there for the rest of it. Your observations and involvement matter enormously.

Actually Use the Resources Offered

When the nurse mentions that a social worker could help connect you with community resources, say yes. When the PT offers to schedule a visit when you can be there to learn exercises, make it happen. When someone mentions caregiver support groups, don't dismiss the idea.

Caregivers who use available resources burn out less often. The support exists - taking advantage of it isn't a sign of weakness.

Set Boundaries

You can't do everything. And you shouldn't try.

It's okay to say no to some requests. It's okay to let some things slide. It's okay to ask other family members to take specific responsibilities instead of doing everything yourself.

If you have siblings who aren't helping, have the direct conversation. "I need you to handle the insurance calls" or "Can you take Tuesday afternoons so I can have a break?" Specific asks work better than general complaints about the unfairness of the situation.

Don't Neglect Your Own Health

The statistics on caregiver health are grim. Caregivers have higher rates of depression, anxiety, and physical health problems than non-caregivers. Some of that is unavoidable stress, but some of it comes from not taking care of yourself.

Keep your own doctor's appointments. Don't skip them because you're too busy with caregiving.

Eat real food. When you're exhausted, it's easy to live on coffee and whatever's quick, but that catches up with you.

Move your body. Even a 15-minute walk helps.

Sleep is critical, and I know it can be hard to get when you're caregiving. But sleep deprivation makes everything worse. If nighttime care is destroying your sleep, explore solutions - a nighttime aide, or rotating nights with another family member, or at minimum making sure you're sleeping when you can.

Respite Isn't Selfish

Taking breaks from caregiving isn't abandoning anyone. It's necessary maintenance.

If you have family members who can give you an afternoon off, take it. If not, there may be formal respite options - adult day programs, short-term respite care, or aide services that give you a break.

Use that time to do something restorative for yourself, not just catching up on errands. See a friend. Take a nap. Watch a movie without interruption.

You cannot pour from an empty cup. Breaks make you a better caregiver, not a worse one.

Communicate with the Person You're Caring For

This gets complicated because of family dynamics and the awkwardness of role reversals.

Try to include them in decisions about their care as much as possible. Even if their cognition is impaired, involve them to whatever extent you can. This is their life.

At the same time, set limits. "I love you and I want to help, but I'm not able to do X" is a complete sentence. You can be a devoted caregiver without becoming a complete martyr.

Keep a System

You're going to be tracking medications, appointments, symptoms, questions for doctors, and a hundred other things. Without some kind of system, important stuff falls through the cracks.

This could be a notebook where you write everything down, or a shared document that multiple family members can update, or an app designed for caregiving. Whatever works for you. The specific tool matters less than having some organized way to track information.

When you bring your family member to a doctor's appointment, bring your notes. Don't rely on memory.

Prepare for the Emotional Stuff

Caregiving brings up all kinds of emotions, and not always the ones you expect.

You might grieve the relationship as it was before, even while your family member is still alive. You might feel trapped. You might have moments of tenderness you didn't expect, and moments of rage that shame you.

If you're struggling emotionally, talk to someone. The home health social worker, a therapist, a support group, a trusted friend. Don't suffer in silence.

This Phase Is Temporary

Even when it feels endless, this particular phase of caregiving will change. Your family member will recover, or their needs will change, or the situation will evolve in some other way.

That doesn't make it easy in the moment. But it might help to remember that you won't be doing exactly this forever.

The Bottom Line

Caregiving is one of the hardest things you can do. It's also one of the most meaningful. You're showing up for someone you love during a vulnerable time.

Take care of yourself, use the resources available, ask for help, and give yourself grace when you don't handle everything perfectly.

You're doing important work.