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 and care givers who come into your life and love your child despite their disabilities.
One of the first challenges parents face with home nursing/care givers is recruitment. My family went through quite a few caregivers while we tried to find the right fit for our daughter’s needs. After having some real caregiving issues in the beginning, I asked the recruitment 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 caregivers who are willing to work for the lower pay that is involved in private home care.
It can be hard to find someone who gets along well within the family unit, so give yourself time to find the caregivers that will be your long term match. It took us about two years to find the nurses that have now been with us for years.
I found two groups of caregivers 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 home care 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 to avoid 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 care is personal conflicts. Since nurses/caregivers 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 caregiver 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 leaving spiteful notes in the communication book to each other. You need to deal with this behaviour immediately.
In my opinion, even though the caregiver 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 a week due to Kate’s needs.
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 caregivers feeling it’s 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 caregiver’s Facebook.
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 caregivers 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.
Finding the Right Care
Saying it’s important to find the right caregiver for your child is one thing; doing it is something else. Here are some insights from our successful experience in finding the right care giving team.
- Home nurses are professional caregivers, not baby-sitters. Never fall into the trap of thinking of them as “hired help.” Parents are the advocates for their child, and the ultimate authority. The opposite of the “hired help syndrome” is the “abdication syndrome.”Nurses (and doctors, for that matter) can advise and explain, but ultimately parents must decide on what to do for their child.
- Be clear with the agency what you’re looking for. Because of Hannah’s respiratory issues, we felt very strongly that we wanted nurses who did not smoke. Anywhere. Period. Some of the ones who didn’t make it with us refrained from smoking while on our premises, but still smelled strongly of smoke from (we assume) smoking in their cars on the way to work. Through household video cameras, we even had one or two who would sneak outside in the middle of the night to smoke in the front yard. The agency finally figured out we were serious about it, and would have switched agencies if that guideline wasn’t followed.
- Spend time with a new nurse and get him/her oriented. We have prepared an “Operating Manual”for Hannah that tells everything we can think of about her background, her medical and procedural schedule, contact information for doctors, and her medical history. It is mounted in a stand in her room and is easily accessible to both veteran and new nurses.
- Have a trial period. You should be comfortable with the nurse, your child should be comfortable with the nurse, and the nurse should be comfortable in your home. If any of these things are missing, it’s not a bad judgment. It’s just not a good match. Recognize it and move on.
Maintain open communication. In the high-stress environment typical of a home with a child who is medically complex, it’s easy for frustrations to fester. Be approachable, and be assertive in return. Assertive means clear communication-neither aggression (being pushy) nor passive (being a doormat).