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Guest Post: The Good, Bad, and Ugly Amidst the Miraculous of Home Care Nursing

KidsJulie is wife to Mark and mom to Tyler, Aaron, McKenna, Hope, Jordan, Brennan, Kaden, Evan (who passed away July, 2006 at 13 months old), Elijah,  Maisy, and Isaac while also blogging at Not Just an Ordinary Life. As a mother to children with a range of medical complexities, Julie is able to offer a number of insights as they relate to her family’s life and experiences, and today we asked her to share her tips on adjusting to life with home care nurses. Visit her blog or check out the Pulse article we did on her family last year for more information. 

A parent’s bit of advice to home care nurses

IMG_3335Let’s face it. Life is messy. And as a home care nurse, you have seen your share of the mess. Life is also precious. And, as a home care nurse, you have been a part of giving a complex child a chance at living that life out of the hospital and safely at home.

As a parent of several children with medical complexities, I want you to know some things. I want you to know how important you are in our lives. You give us a chance at finding some sense of our new normal. You help us to find a little balance in a life that has gone dangerously off kilter.

The Power of Invisibility

IMG_4313The best home care nurses have what sounds like an impossible task. They learn to be care for a child who needs them while also knowing when to become invisible as they seek to allow the family to live without the peering eyes of an outsider. I’ve seen it done flawlessly and frankly I am amazed each time. To be honest, your services feel like a blessing and a curse in our lives early on. We just wanted to bring a baby home from the hospital and instead we leave with a team of professionals that we didn’t ask for. You are at the intimate end of that reality and you will the struggles that a family has to adjust to this new way of life.

Letting Parents Parent

IMG_1943Families come to depend on you, but it is always important to remember that you know the child second best, because we hold our child’s whole story… their past, present and future. For some families, it is hard to adjust to being mom when there is a nurse in the home that takes so much of the mothering role on themselves.

You can give that mother a gift by letting her find her place and stepping back. If the little one gets hurt and the parents are available, let them comfort the child. It is a painful thing when that child goes to the nurse for comfort instead of the parent. That is a clue that you need to step back and encourage the parent and the child. Remind the mom that they are still the “expert” on their child. The confidence and reassurance you help to build in us as parents will build this family up and make them better able to care for their child.

IMG_0779There are times when you would do things differently. You see the way another person parents and you cringe. Watching parents make mistakes or simply take a different approach can be difficult. But if there is no danger involved, remember, you are guest in the home of the client and unwelcome advice erodes the trust. Unless you are asked for an opinion, be careful with your words. Families already feel judged and isolated. Help us by not making us feel that way in our own homes.

It’s a Team Effort

Be a team player. Families don’t need the extra stress of dealing with the small stuff like nurses not getting along. And don’t take things personally. I have some quirky house rules, like where I want things to be kept and how I want telephone calls to doctors to be handled. But it’s my house and I get to make those decisions. It’s not personal, it just helps me to feel like I still have some control of my home.

IMG_1165It’s a fine line we must all walk… because the nurses in our home are some of the most trusted, compassionate, people in our lives. They see our day to day struggles and they “get it.”  I have to remind my kids that the nurses aren’t actually a part of the family! My kids have grown up alongside our nurses and they love them as part of the family… no amount of professional boundary talk can change how a child feels about someone who has shown them concern, care and love.

Home care nurses, you a part of a miracle that we call our child. You are invaluable to our family and we cannot thank you enough.

Originally published: June 3, 2014

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