Today we kick off a series that will appear here on the Thrive blog over the next next six months. Marty Barnes, the writer and mother behind CaseyBarnes.org, will talk today about the beginning of their journey with home care nursing in the first of a five-part series – be sure to check back in each month as she talks more about the advice and knowledge they’ve gathered over the years.
Marty and her husband Tim have been married since 2005 and welcomed their only child in 2006. Marty’s daughter, Casey, was born with a severe brain injury (that includes MANY complications). She has defied all odds since day one. Casey loves to sing, dance, do arts and crafts, swim, watch movies and snuggle. She is nonverbal…but VERY good at making her point. Every day with her is a gift and an adventure.
Marty is very active in the special needs community, virtual as well as physical. Each year Marty and her family host holiday parties for local central Texas families with children that have special needs. Marty also has many tools and resources that she has developed over the years to help other families like hers. These tools are available on Casey’s website for anyone that is interested.
I remember it like it was yesterday. I had all of the traffic lights on the back roads timed perfectly. I knew exactly how long I had at each red light to jump over the console, suction Casey, and get back behind the wheel before it turned green. I knew all the places I could pull over if I needed more than a few seconds at a red light. I would sleep for 30-60 minutes here and there waking up for medications, suctioning, diapers, to add food to her continuous feeds, etc.
We had a nurse that would come by to watch Casey for 3-4 hours once or twice a month. We would go on a date and try to spend time as a “normal” couple. Other than these few hours a month, we focused on keeping Casey alive. Our health, our sanity, our relationship all took a back seat.
We moved from California to Texas around the time Casey turned 2. Casey has a lot of doctor appointments and I was not able to take back roads or pull over anymore. All transports for Casey from that point on required 2 people- 1 to maintain her airway while the other drove. We HAD to get help; we had to get nursing.
Having a nurse come into your home is not natural. You feel like a failure as parent for not caring for your child on your own. There is a weird phase of defining your roles. Are you the boss, are you the assistant, are you a partner, are you a host? What if I don’t like the nurse? What if they don’t like me? Most importantly, what if they cannot provide the care that my child needs? And there is someone in your house, the privacy hurdle is hard to get over.
Initially we had a nurse that came 1 day a week for 12 hours. She was also new to home health, so we figured it out together. I showed her exactly how I cared for Casey and she did her best to do things exactly as I showed her. She loved Casey and we immediately felt like we were on the same team.
After a few shifts she was able to handle Casey’s needs. On her days we would plan all of Casey’s appointments. Some days I was able to get some sleep. I would run my errands. I even found time to go to lunch with friends and take a break.
Our nurse had to cut her hours back from 12 to 8 after a few months. I was so reluctant to start nursing, but now the thought of losing some of these precious hours was devastating. I decided that instead of losing 4 hours, I would go to 3 days- 8 hours each and find an additional nurse. Of course we had to jump through hoops to get insurance to cover the additional hours, but we managed to get it done.
When we look for new nurses we have learned that they are not all as fantastic as our first one. Early on I would try to make it work. I would train and retrain and do everything I could before calling the agency to switch them out.
Now I have learned to trust my instincts. If they are a good fit I can usually tell right away. The bad fits are not necessarily bad nurses; they just are not the right nurse for us. It’s very important to feel comfortable and trust your nurse. If you feel like you have to babysit the nurse the entire time, it’s not the right nurse. We are clear about what we expect, and we let our nurses know how much we appreciate them.
It was a real struggle to start nursing. Over the years we have added many shifts and have gone through some amazing and some scary nurses. I still wish I had not waited so long. Those first 2 years did not have to be as hard as they were. I also know that having help does not make me any less of a mom. It does take a village, in our case, a very large village.Originally published: December 15, 2015