When children with special medical needs come home from the hospital, they don’t come alone.
In addition to equipment and supplies, your kid’s special needs typically require the services of a variety of medical staff, including nurses who may be coming and going, or even in the home 24 hours a day, seven days a week.
That may take some getting used to.
Here are some tips from PHS staff and parents on how to live in harmony.
Make sure nurses understand what you expect of them. Decide on boundaries early on and keep communicating (things like where nurses should park their vehicles, can they use the refrigerator or should they bring lunch in a cooler, can they use kitchen appliances, or a separate bathroom). If something isn’t working, make changes so the family can maintain some level of privacy.
Take notes on kids special needs
Try using a “Communications Book.” You and the nurses write comments in the notebook throughout the day and are able to communicate through notes left in the book. As nurses change shifts, they read through the book to see how the child is doing that day or if anything has changed since they were last in the home. This keeps everybody on the same page.
Parents can also use the book to communicate an otherwise uncomfortable situation (for example, if one nurse is bad at cleaning up, the parent can write a note asking all nurses to please be better about cleaning up after themselves. That way, the parent doesn’t have to call out a specific person, but rather lets all nurses know they need to be careful and conscientious when they are in someone else’s home).
Make a list
Give the nurses a list of “need to know” situations, such if you wished to be awakened for fever or other signs or symptoms of an impending illness during the night or when to be called during the day.
Don’t let things fester
Address any concerns before they jeopardize your relationship. This is where a communications book comes in very handy, but if you are uncomfortable directly or indirectly confronting a nurse over a certain issue, talk to her/his supervisor.
Understand that personalities may clash. You may be able to overlook that, but if there is a nurse in your home you know will not work with your family, ask the nursing agency for a replacement.
Help the nurses help you
Don’t expect the nurses to know everything about your child. You are the expert; orient them as much as you can and let them be helpful to you.
How do you cope?
How does your family deal with having extra people in your home? Can you share any tips on how to maintain privacy and normalcy?
We’d love to hear from you.