Home Care Nursing: What I Wish I'd Known Before Welcoming Nurses into My House

When Declan was in the NICU, the nurses felt like my therapists and friends. They advised me, coached me, and cheered for us as we stumbled through those early days.

Looking back, I can see there were a few who weren’t great. But in the hospital, it was easier to forget that part, because the system absorbed it. If a nurse wasn’t a good fit, we could ask for a change (or they’d self-select out), and someone else replaced them. Staffing in a hospital isn’t perfect, but Declan always had coverage. If a less-than-ideal nurse left his case, a gem stepped in.

So before we came home, I assumed it would work the same way.

Declan was coming home, and nurses would be there too. It would be just like the hospital…right?

If only we’d known.

Declan’s first years included more near-death moments than I can count, and many of them involved nursing care. Some of those stories will be in my book (when it’s published—timing TBD). But this article is about what I wish I had truly understood the first time we brought him home and became dependent on home care.

(Content note: this post mentions medical neglect and abuse.)

Credentials Don't Guarantee Competence

We’re taught our whole lives, through TV ads (“talk to your doctor”), disclaimers (“ask your health care professional”), and family lore (“the doctor said”), that doctors and nurses know best.

The truth is: they often know more than you at baseline, because they have training most people don’t. But that doesn’t make them infallible. It doesn’t make them experts in your child. And it definitely doesn’t make them experts in rare disease.

Someone once said to me: “Ashley, what do you call the person who graduates at the bottom of their med school class?”

“Doctor.”

That’s true for nursing, too. LPNs. Two-year RNs. Four-year RNs. RNs with master’s degrees or doctorates. All of them can hold the title “nurse.” And the title alone doesn’t tell you whether they can safely handle your situation.

Even excellent nurses don’t know everything, and everyone has to start somewhere. I trained more nurses than I can count on trach care: how to suction, how to change ties, how to manage secretions, how to recognize respiratory distress, and yes, how to do a trach change.

I used to keep a checklist of every nurse on Declan’s case and whether they had ever done a trach change (even once) in a controlled setting. Because it’s hard to trust someone to manage a decannulation emergency if they’ve never changed a trach when things are calm.

For every competent nurse we had, there were at least two who were not competent for Declan’s level of care. Most weren’t properly trained before they started with us, and we had to teach them Declan’s equipment and routines from the ground up.

We also had nurses who:

• changed ventilator settings

• messed up meds

• “forgot” meds despite them being on the chart

• panicked in an emergency. Declan would have died if I hadn’t been there

There are plenty more examples. But the point is this:

We have to stop assuming that a credential automatically equals competence.

And people with credentials need to stop taking it personally when families don’t automatically surrender authority in their own home or for their own care.

Credentials Don't Guarantee Character

"We put the CARE in health care." That slogan comes to mind when people talk about nurses.

Even the word nurse is both a title and a verb: to nurse someone back to health, to nurse a baby, to care for someone. I think it’s so deeply ingrained in us that nurses are inherently caring that it becomes a painful paradigm shift when reality doesn’t match the story—when we have to remember they’re just people. Some are wonderful. Some are mediocre. Some are harmful. Like every other group of humans.

We had truly amazing nurses over the years. People who saved me, saved Declan, and kept us going. They embodied the best meaning of the word “nurse.”

We also had the absolute worst.

We had a nurse who tortured Declan. That experience is part of why we fought to change Minnesota law. Because what happened to him should have been clearly illegal, with clear consequences. We had nurses who left bruises. Nurses who neglected him and slept through alarms when they were not supposed to be sleeping. Nurses who showed up hours late because they simply didn’t care.

Most nurses are good people. But being a nurse does not make someone a saint. And assuming it does can blind families to early warning signs.

Your (Or Your Child's) Nurses Are Not Your Friends

This one was hard for me.

When we had nurses in our home who were kind, funny, and easy to be around, it was difficult not to blur the lines. I wanted connection. I wanted normal adult conversation. I wanted to feel less alone.

Parenting is isolating. Adulthood is isolating (in the U.S., at least). But parenting a medically complex child who needs round-the-clock care? It can be isolation on a different level. Like COVID-bubble isolation, except it never ends.

Here’s what I learned the hard way:

Even when there’s genuine connection, the relationship is built around a paycheck. Even if a nurse loves the job and cares deeply, it is still a job. They have their own lives that you are not part of. They are paid to be in your home, and you can fire them.

The power dynamic is not equal. They are a caregiver for you or your child, but they are also your staff. They live inside your world; you do not live inside theirs. And when they stop being paid to care for your family, most of the shared context disappears.

It would have saved me a lot of heartache if I had understood this earlier:

Your nurses are not your friends. They are staff. You can and should treat them with kindness and respect. You can be friendly. But proximity does not equal friendship.

If I could go back and change anything, it would be this: I would keep my relationships with nurses more professional, and I would work harder to protect and maintain my real friendships outside our home-care bubble.

YOU are in Charge

This became my motto over the years: my house, my kid, my rules.

Some nurses walked in and fit in right away. They followed my lead, learned Declan’s routine, and understood that consistency was safety. Others…not so much.

Plenty of nurses were a poor fit in our home because they wanted to be in charge. To do things their way, to ignore preferences, or to treat boundaries as optional. I see versions of this in trach groups all the time.

Just recently someone posted about a night nurse who sat in the living room, right outside the parents’ bedroom and the child’s bedroom, and talked loudly on a personal phone call for over an hour, interrupting the family’s sleep. Instead of monitoring the child, charting, or doing equipment maintenance, she treated the shift like her personal time.

My response?

You have to learn to stand up for yourself. It’s your house. Your kid. Your rules.

In that situation, I would have interrupted the phone call within ten minutes and said something like:

“Is this a personal call? If so, please hang up. Personal calls should be kept to a minimum while you’re working. And when the family is sleeping, noise levels need to be respected.”

And if a parent struggles to address it directly (which is understandable, especially when you’re exhausted and conflict-avoidant), then the next step is simple:

Call the agency immediately and ask a supervisor to address it. You are not “being dramatic.” You are doing your job as the parent and protecting your child.

Take Away

Home care can be life-saving, and the right nurse can feel like a miracle. But home care is not the hospital.

The system is looser, training is inconsistent, oversight is thin, and families often become the safety net.

I didn’t know that at the beginning and I paid for that learning curve in fear, exhaustion, and sometimes tragedy.

My hope is that telling the truth about it helps another family walk into home care with clearer eyes, stronger boundaries, and more confidence in the one thing that matters most:

You are in charge.