The last few months have been really difficult from a caretaker perspective. There have been a number of changes including the loss of two long-time nurses just over a month apart. Ezzy’s daytime non-nurse caregiver has also had to reduce her hours with the start of the school year. All of this has meant that our schedule has been in flux…and that we’ve been interviewing a lot of potential caregivers. I know I haven’t written here much about the details of how Esmé is cared for, and by whom…but it seems like it might be time to explain the complexities of this aspect of our lives, because finding (and keeping) appropriate, reliable, and professional home care for a child with disabilities can be a real challenge.

At the moment (to the best of my knowledge) there are no local day-care, after school, or school programs that Ez could attend where all of her needs (physical, medical, educational, social) can be met. For now, Ez is receiving a number of services through the school district, including occupational therapy, physical therapy, speech therapy, adaptive technology, vision therapy, and special ed. Some of these therapies are in-home, some are at a therapy facility 20 minutes away. So, while Ez is receiving appropriate academic and developmental support, there is no childcare component of these services, meaning that I am not able to drop Ez off, like many people do with daycare or school for several hours while I work or run errands.

We are fortunate to live in a state with a very good Medicaid waiver program. Esmé is insured through our family’s private insurance, but she is also covered individually with supplemental Medicaid insurance which covers many costs that insurance doesn’t cover–such as some equipment, co-pays (which can pile up when you have as many specialists and expensive meds as Ez does!), and nursing. Through Medicaid we are able to hire Medicaid independent provider nurses to care for Ez. We are also able to hire non-nurse “assistants” through an associated program called consumer directed care. I am responsible for finding, interviewing, hiring, managing, and firing all caregivers. This is no small undertaking, but we do it this way because independent nurses are better paid than nurses working through an agency, and we want people who care for Ez to be well paid for what they do. Also, and most importantly, we want to maintain control over who we work with and their training.

Over the years we’ve had all manner of odd applicants and interviews. Just yesterday, I set up an interview with someone who arrived 25 minutes late. She showed up with a friend who sort of lurked a few feet away. The interviewee offered no apology and showed no concern over being late. Ezzy was unravelling and I know that I will not tolerate having a caregiver who is late, so I basically said, “Sorry, we have to go now. Nice to meet you, but Ez can’t wait here any longer.”

Other times it takes longer to realize that someone isn’t the right fit. I overheard one nurse telling Ezzy she loved her after two days on the job–which really creeped me out and made me wonder if she was going to abscond with my kid. We had another registered nurse come in for her first overnight shift with Esmé and pull out Esmé’s feeding tube (meaning completely dislodging it from the hole in her abdomen) twice in the time between 12:30-2:00am. Both times she came to tell us there was a problem by opening our bedroom door and walking in without knocking. After the second feeding tube pull-out I questioned what happened and what meds were leaking out of Esmé’s stomach into the bedsheets. The nurse could not answer my questions and wound up walking off the job at 3am. The next morning we realized that she had also mis-dosed Esmé’s medications–giving an antibiotic instead of Esmé’s anti-convulsant.

More recently I have gone through training a nurse to have her quit with no notice. Her first replacement? Scheduled training and then informed me she decided to take a vacation and would no longer be available until two weeks later than we’d scheduled. Another nurse was working with Ez for months before we realized that she’d removed Esmé’s personal medical information from the house, not completed basic professional tasks associated with her position, and mislead us about a fall Esmé took in her care.

I have a number of friends who have had experiences with homecare that make our experiences look like a walk in the park, believe me. I think that one of the challenges of finding good home nursing/caregiving is that a lot of people doing it want very flexible schedules, which we can accommodate, to a point–but not so much if it is a constant problem. I think some non-homecare nurses are not even aware of this alternative to hospital or office work, or they are not aware of the pay rates for independent providers, which, at least in my state on a medically fragile pediatric case, are quite competitive with hospital pay. Others may be worried about the lack of benefits or predictability. Others may want the excitement of a hospital setting and multiple patients.

However, there are a number of people who do homecare nursing/caregiving for all of the right reasons. They want to work closely with a single patient. They want to see the results of their work as their patient makes progress over time. They want to help support a family in a challenging situation. They want to be one part nurse, one part snuggler, one part teacher, one part medical brain-stormer. However, finding these awesome individuals (who haven’t already been scooped up by other families and can fit your schedule!) is a real challenge. I so wish that the pool of available nurses and caregivers was wider–and I wish more people wanted to do this challenging and rewarding work.
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I know we have been so fortunate to have hired some fantastic caregivers over the years. Nurses who have stayed with Ez for 4, 2 1/2, 1+ years respectively and left only due to personal life changes. We still have two caregivers that have been with us for over a year each and who, I hope, will remain with us for a long time still! We also have a new nurse who is becoming an integral team member. Each of these caregivers has brought something different to our team. Esmé seems to be responsive and comfortable with caregivers of all kinds of different personality types and training backgrounds.

The thing that all of our best home care nurses have in common–the thing I look for in my interviews–is curiosity. Being Esmé’s nurse can be a bit boring if your thing is trauma nursing. But, if your thing is trying to sort out (in between tube feeds, snuggles, and vitals) why Ez can have a fever for two weeks, low urine output, a negative urine culture, normal white blood cell count, and intermittent pain on urination then this is a good job. If your thing is watching a tiny girl who “shouldn’t” be able to do all manner of things learning to do those things, then this is a good job. If your thing is getting weird report from a couple of goofy and devoted parents, then this is a good job. If your thing is embracing the Ezzy-mystery…then this is a good job!

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The changes in our caregiver coverage–and my summer-long search for nurses and caregivers has made me think about a lot of things…things like what makes a good fit for this job. Things like wondering about how to build a long-term and reliable team of caregivers so that I’m not rebuilding the team every few months….so that I can make a plan for what our lives will look like. I have been hyper aware (and, if I am being honest, pretty depressed) about what these constant changes mean for my ability to get things done. I am scrambling to continue the work I do with The Cute Syndrome Foundation and keep making progress on the full-length book I have been working on. All while still getting Ez to her therapies, organizing household stuff, and attempting to get back to exercising regularly (because, my sanity!).

What I guess I overlooked was thinking too long about how these changes might effect Esmé. I figured that Ez would miss her caregivers that are no longer with her or with her less than before, but I hadn’t thought about how much it might bother her–because it seemed not to in the past. What little I had thought about it I thought she might sort of like it, because it would mean more time with me…and she has been going through a Maman, Maman, Maman kind of phase.

But, what I have been realizing is that she is now at a point where caregiver changes are upsetting to her. She has been going to the door in the morning lately, as if she expects someone to show up. She’s been getting bored with me. And two nights ago when her daytime caregiver was getting ready to leave, Ezzy started following her to the door, rolling and crying. When Mayah lifted Ez up to hug her goodbye, Ez leaned in close on her shoulder and squeezed. Then she pushed back up, and, slapping her hand on Mayah’s chest she said something that sounded undeniably like “No, Mayah.” And then she leaned in again to hug her caregiver, her friend, her confidant. She didn’t want her to go…or at least not to go away so long this time.
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I keep thinking about that moment…about how I wish I could show it to the amazing professional and compassionate hospital nurses I have known over the years and explain, “See, this is why you should think about homecare (p.s., we are hiring)!” I keep thinking about how it wasn’t long ago that I was certain that Ez wouldn’t be able to bond with another caregiver, that I’d be her only full-time caregiver forever…the connections she’s made with her caregivers give me hope for her continued progress toward independence. I keep thinking about the promise that there are more caregivers out there who will occupy important places in Esmé’s heart.

And I keep thinking about what a gift the good caregivers are to my daughter. What an amazing, amazing gift.

5 Comments

  • We are not in a position of needing home medical care at this point, but finding a good babysitter has been challenging. We qualify for respite care paid by the state, but those workers are ONLY allowed to care for our daughter with special needs, and not either of our toddler sons. Not a good fit for us at all! Basically if we use the state paid respite care I have to find another babysitter as well if I actually want to DO anything. And of course then I have to think about caregiver dynamics and make sure that my two babysitters aren't going to be at odds…

    Fortunately we met a young lady who is willing to care for all of our children. We pay her out of pocket but it is absolutely worth it.
    What a saga… All that to say: I sympathize!

  • I was homecare for two adults with disabilities for 2 years before getting a job as a special education teacher. We truly love the people we care for and think about them often. Your Esme is beautiful and precious. I would have loved to work with Esme!

  • I have spent the majority of my nursing career helping medically fragile children have a good day, at home and at school. My heart aches that you cannot find reliable help. Wish I was closer! I consider my care of those kiddos also a help to parents and entire families. When your baby is safe, you can relax a bit.

    Kim

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