I Think My Child Needs In-Home Nursing… Now What?
By Elisabeth McNulty, Pediatric Family Support Specialist (Bayada)

Having  a chronically ill child is hard. Really hard. It affects your entire family, who must adjust to their “new normal.” As a caregiver, your days are consumed with making phone calls, going to doctors’ appointments, managing therapies, giving medicine, advocating, and caring for your sweet child who can’t care for himself. Although the love you carry for your child far surpasses the chaos of your all-consuming medical life, eventually, you feel worn. Sleepless nights and ever-busy days can wear on even the strongest of human beings, leaving them feeling drained, overwhelmed, and a bit lost. But it doesn’t have to be that way; there is help.

In-home nursing is not only a way to keep your child safe, it’s also a way for you to feel less stressed in an otherwise stressful situation. It was 15 months before I even realized there was help like this. Most families go even longer trying to navigate the challenges of caregiving alone, while running low on sleep and high on stress. Nobody wants their child to be sick enough for nursing, but like my son, sometimes they simply need it.

Once I started to consider in-home nursing for my son, I had a million questions swirling through my head. I bet you do too. Below are answers to five very common questions when it comes time to start looking into home health nursing.

1. Where do I get started?

Search local home health agencies. Ask your ‘special needs mommy/daddy friends with home nursing’ who their agency is. Once you have about three agencies in mind—don’t go overboard, start with just a few so you don’t overwhelm yourself—just call them! They will ask you simple questions about your child’s needs as well as contact your child’s insurance agencies to check on home nursing coverage. Be sure to ask as many questions as you have.

2. What does the process of starting in-home nursing look like?

Typically, a nurse case manager will come to your home and discuss your child’s plan of care, which is developed in conjunction with you and your child’s physicians. Many agencies will send nurses for you to meet to ensure that they are a good fit for your child and your family. Once the agency has received authorization from the insurance company and the schedule is determined, they will start staffing your case!

3. How will my family adjust to “strangers” in our home?

When starting home care for the first time, it’s common to feel like nurses are just strangers in your home. In most cases, that feeling doesn’t last long and in fact, many caregivers become like part of the family. However, if the nurse still feels like a stranger after he/she has been in your home awhile, maybe they just aren’t the right fit. Simply call your agency and let them know. They will be happy to work with you to find a better match for your family.

4. What are the expectations of nurses in our home?

The expectations of the nurse depend on the needs of your child and family. Their hours are determined by your child’s plan of care, your insurance coverage, and your schedule. Do you need them at night so you can sleep? Or during the day so you and your spouse can work? Does your child need nursing care at school? Or all of the above? The nurses can also do small tasks pertaining to the child, such as his laundry, ordering supplies, and refilling medications. Although, the nurse’s main priority is keeping your child safe and healthy, they should also interact with your child on a personal level, too. Playing simple games or reading to your child is a way for the two of them to connect and develop a trusting, caring relationship. And it helps all of you to maintain as normal a lifestyle as possible.

5. How will this enhance the quality of life for all involved?

The thought of having new and different people in your own personal space can feel very awkward at first. Trust me, I know. I was nervous to start nursing in our home. Fast forward five years into this journey and I can’t imagine life without my son’s nurses. They are more than just nurses, they like extended members of our family. Because of home nursing, I can sleep and work with the peace of mind that my child is safe and cared for by a highly skilled and well-trained professional. Not just anyone can manage my son’s complicated medical needs. I can’t just call a babysitter or neighbor to watch him while I run out and sometimes, he’s too ill to take with me. Nursing has saved my sanity and enhanced the quality of life for all members of our family.

Will there be bumps on the road, call-offs, and nurses that don’t quite click? Yes, but with the help of your agency and full, honest communication, home health nursing can change your life for the better!