While nursing in the home is extremely valuable, it does not come without challenges. Recruitment, personality conflicts and lack of privacy, just to name a few.
Kate with her nurse Pam at the Special Olympics
Although I outline the challenges below, I firmly believe that nursing care has kept my daughter much healthier than she would be without it. The greatest gifts are the nurses who come into your life and love your child despite her disability. In addition, the medical care nurses provide releases you to do more important things to so you can be the parent that you were intended to be.
One of the first challenges parents face with home nursing is recruitment. My family went through quite a few nurses while we tried to find the right fit for our daughter’s needs. After having some real nursing issues in the beginning, I asked the nursing agency if they were actually interviewing the nurses or just hiring anyone who walked through the door. Unfortunately, it was more of the latter, since there is a shortage of nurses who are willing to work for the lower pay and benefits involved in homecare.
It can be hard to find someone who gets along well within the family unit, so give yourself time to find the nurses that will be your long term matches. It took us about two years to find the nurses that have been with us for years.
I found two groups of nurses who are working in homecare to be good choices: those who are close to retirement, and those who need flexible work situations because they have kids. Beware of nurses who are working in homecare as a last resort because they were fired from hospitals and nursing homes.
It goes both ways, too. You may like a nurse but the nurse may decide the job is not for him or her. Try not to take it personally and figure out if you can change something if you are losing good nurses. For example, a little effort in the beginning goes a long way in the end. I need to remind myself of that all the time. I am so burnt out from “orienting” new people that I come across as not very welcoming at times.
Another common issue with home nursing is personal conflicts. Since nurses see you all the time in the home, they know more about you and your life than your immediate family. We all know that fights can occur even with your closest family members. The same is true for nursing relationships.
If you suddenly have a nurse that you are in conflict with, it can make living in your own home uncomfortable. Sometimes nurses will commiserate with other nurses and you hear them whispering together or even leaving spiteful notes in the communication book to each other. You need to deal with this behavior immediately.
In my opinion, even though the nurse is working with your child, he or she also needs to work well with the family. I have had sobbing sessions with my husband over things the nurses have done or said to me. Typically it comes down to me not having the backbone to stand up and say what I need to. Usually with his motivation, I will speak up and we will work things out.
Nurses do not need to love my kids or me, but they do need to respect us. If the respect is gone, things will never work and it is time for them to move on. Mental health professionals say that loss of respect is the most common cause of divorce, and the same holds true for other relationships.
Nurses also experience conflicts. Sometimes parents are overly demanding, condescending or make them do tasks that are not their responsibilities. Basically, if both sides can be pleasant, it will only serve to help the child.
The last challenge I will touch on is privacy. There are some days I feel like crying for all the privacy I have given up in exchange for nursing care. We are now up to 72 hours of nursing care due to Kate’s needs and her mandatory school nursing.
Sometimes I can’t even brush my teeth before a nurse is coming up to me telling me how many bowel movements Kate had that night, or informing me that she heard me snore all night and I should get that checked out.
I won’t even get into nurses feeling it necessary to step in to discipline your other kids, or the nurses on the other extreme who would let your kids light the house on fire rather than intervene. I prefer a middle-of-the-road approach. Do not discipline the kids unless they are doing something harmful.
Finally, perhaps you would like to yell at your spouse for something he/she did. Maybe you did something entirely not like yourself and threw a hotdog at your husband or something equally foolish. Tone your arguments down or you’ll end up being the talk of the nurses’ Facebook page or even the school employee lunchroom conversations.
On the other hand, if you have nurses in the home, be very prepared and willing to let it all hang out there or you will grow very weary of putting on a perfect façade incessantly. It must be challenging for the nurses to go about their job while ignoring most of what is going on in our lives. I have had nurses tell me that some homes they work in are steamier than soap operas, though of course they do spare the details because they are sworn to confidentiality.
By the way, the hotdog story is true. My triplets were toddlers and to this day I can’t remember why I threw the hotdog at my husband.