Making the decision to hire staff for your child is difficult for all sorts of reasons. One one hand, you need the help and break to take care of yourself and family. On the other hand, it can be “another thing” to manage. And let’s face it- having people in your home, taking care of your child, can feel weird.
I have had compliments from nurses, nursing agency supervisors, and Crescent Cove staff on the “organization system” I’ve created. It truly has been a collaborative effort between myself and our AMAZING PCA, Rachel, and has evolved over time.
Disclaimer: These are things that have helped my very Type A personality. This was developed over the course of a couple of years. Rome wasn’t built in a day, after all. You may find all, some, or none of it helpful for your situation. Or you may just think I'm crazy-ha!
Nevertheless, here are some things that we have created can make your life easier when you wear the hat of “medical mom manager”....
1. Have written expectations of your own. Whether staff are hired by an agency or found through social media, they are coming to YOUR home. To help YOUR family. YOUR child. It’s helpful for everyone to clearly detail what you expect from staff. Some of this stuff seems implied or obvious. But we’ve learned the hard way that it’s helpful to put it in writing. Here is a copy of what I give to any staff person who becomes an employee.
2. Create a communication system. Before we had staff, my husband and I were skilled at meeting Karter’s needs without a lot of documentation. However, once you have staff it becomes a bit more complicated to know what was done when. We learned over time, it’s helpful to have a communication system so that way any caretaker (staff or parent) can see what has been provided in the day.
Some people like a notebook, others prefer using apps. For us, it has been easiest to use a paper daily form. I don’t have just one person or agency, so having “one” electronic system doesn’t work for us. It is important for me to know when meds were given, how his tube feeds were tolerated, how long he napped, when his diaper was changed, etc. It allows everyone that’s caring for him that day to know how the day has gone, and what care’s he’s received. It’s also a way for you to have quality control. If they write down exactly what they gave and what time, it allows you to ensure they are following the latest orders.
The reality is we are human. All humans make mistakes. But you don’t want that mistake to be the wrong dose of medication. It’s happened to us, and this system allowed me to catch and correct it. I don’t get to see the nurses charts, and PCA’s may not be required to document the cares they’ve provided. This acts as a simplified version of the cumbersome medical charts.
In addition, we have a million home therapies we have to do. It’s impossible to get them all in, and sometime Karter isn’t cooperative. Or he’s sick. It’s helpful to know what was accomplished and how it went. This is the form that we created and is working well for us!
Lastly, another advantage is that it allows me to identify changes that I can report to providers during our appointments. For example, if his seizures have increased or sleep has been extremely interrupted, I can look back and have data to show when the changes began. For me, dates and days run together. Having this information helps me sort out timelines and details when I am working his team on a new plan.
Click here to view our: Daily Log PDF
Another app we have found helpful is Cozi Calendar appi. This allows me, my husband, and PCA to add in all the appointments, therapies, work travel schedules, etc. in one place that is accessible anywhere.
Click here to view: Cozi Calendar
3. Be specific about your child’s needs and routines. One of the challenges for any “manager” is learning how to work with each person as they learn how to care for your child. If you’re reading this, chances are you have a million things to attempt to implement at home (medical and therapies). Each staff person learns differently and/or prefer a different approach. Some people want you to coach them through every step. Others may feel nervous having the “expert parent” right there watching them. Instead, they’d rather try it without you there and ask questions later. Some prefer a detailed schedule written out. Others prefer autonomy with how to structure the day.
While it’s important to support your staff and seriously consider their preferences, at the end of the day it’s YOUR child. If you want things done at a certain time in a certain way, then don’t be afraid to write it out. When our PCA first started, we had a “rough” daily schedule so she had an idea of how to tackle all the home activities. This helped her get familiar with Karter, and she could focus on implementing activities rather than what to do next. Over time, she became so comfortable with Karter’s routines that she is able to have more autonomy with this. It works for us.
Similarly, it’s important to write out specific details for those “trickier” parts of the day (i.e. sleep). Karter has a very specific sleep routine that may or may not work. We have learned certain tips or tricks that can help. Likewise, we learned things that DON’T work. It sets everyone up for success when this information is available.
In general, the more information staff have about your child, the better they will be able to do their job. We keep this information in a “staff” binder for their reference. We don’t expect them to learn all things Karter after one or two shifts. It takes time. And if they are struggling, having tips and tricks detailed may help them, and ultimately your child.
4. Keep medical information handy and current. I have a “cover page” on our staff binder that has the immediate, most important information in the event a 911 call is made. It includes our address, Karter’s main diagnoses, preferred hospital, preferred pharmacy, primary care physician, and his code status (yes, that is a thing we discuss often).
I also keep a detailed medical summary sheet. Quite frankly, I was so sick of having to repeat myself at appointments. I now just hand it to the nurse, they update their charts, and ask clarifying questions. It includes his personal/social info, current medications, providers, and cares. It also works great as an order for homecare nurses. When I handed this document to our nursing agency they were thrilled! But, most importantly, in the event of an emergency I can hand this copy to the hospital team. We keep current copies in his staff binder and emergency backpack.
Click Here to View:
5. Build rapport and relationships, but it’s ok to have boundaries! This is the trickiest one. For us, we want our home to be a place staff want to work. We want them to feel good coming to their place of work. But it’s also our home. This life is full of grief, trauma, and exhaustion. Sometimes I just don’t have the energy to put into another relationship. And some days, it’s hard where we live. You don’t have a free pass to be rude to others, but you DO need to find people who can have empathy and compassion for this.
All relationships are built on trust, but trust with your staff is critical to having a successful partnership. Trust takes time. For me, it’s not automatic when it comes to having someone else care for Karter. In fact, trauma teaches you to defend and protect. We have been let down by the medical world, and it’s impossible to shed this bias completely.
There are going to be some people you click with automatically. There are some relationships that will organically evolve and “bleed” into personal relationships. Our full-time PCA, Rachel, has most-definitely become like a family member. Our girls are comfortable with her, so we have her babysit sometimes (and pay her privately). She and I have an almost-sister-like vibe. She’s invited to all our events. But this happened over time. It was never forced. It was never expected. It works for us.
But that’s not going to be the case with everyone- and that’s ok! I have learned that I actually prefer to have boundaries. I like some sense of professionalism on the part of the staff. Sometimes I like to be able to do my own thing without having to make small talk or exchange stories. Other days, I enjoy it. But either way, it’s nice to have staff that are there to care for your child while at the same time respect your time , space, and boundaries.
Check out how we put this together!