My daughter Esmé is 5-and-half years old. She was supposed to start Kindergarten this year. However, the school year started more than five weeks ago, and she still hasn’t been once, except to drop off her school supplies. Esmé wasn’t going to attend school under typical circumstances. The plan was for her to join other students in a small self-contained special-ed classroom for one hour, twice a week, and that’s it. For us, that was kind of a big step, because Esmé’s health, developmental, and communication challenges are so significant that we could only entertain the idea of her going to school with one of her night nurses in tow, even for that short stretch of time. But finding care for my fragile child to get to school has been nothing short of impossible.
We were all set to go to Kindergarten, but then we had an unavoidable overnight staffing change, leaving us with only one night nurse trying to cover as many nights as possible. This meant that our nurse could no longer attend school with Esmé. The school district had offered to supply a nurse from the beginning, and while I preferred Esmé to attend school with someone familiar with her needs and history, at this point it seemed more important that she get to go to school at all. So, I asked the school district to find someone. It was last minute, so I knew I’d have to be patient while they found an available (and capable) nurse. I mean, I’m used to waiting for things. I wait an extraordinarily long time for all kinds of things, because it's worth it: Medicaid approvals, return calls from doctors, delayed milestones, and my favorite Vietnamese soup. In these sorts of cases, as well as with Esmé’s future nurse, it's more important that things happen in a well-planned manner than that they happen quickly.
However, we're five weeks in and no further along than we were on the first day of school. I am, of course, feeling pretty frustrated for a number of reasons, but unfortunately, I'm also not even the least bit surprised. Setting Esmé’s immediate medical concerns aside, one of the biggest challenges we've consistently faced is finding, training, and maintaining caregivers and nurses.
The problem of finding nurses and caregivers is multifaceted. Some of it has to do with all the standard things any parent worries about in finding a caregiver for their child: Can I trust this person? Are they reliable? Will they treat my child with compassion and respect in my absence? Of course, other issues in finding care for Esmé are magnified by her disabilities. She cannot move her body to protect herself from even innocent bumps and falls. She cannot yell out for help. She cannot verbalize her needs, her fears, or her feelings. So, when she cries as I hand her over to her night nurse, I don’t know if she just prefers to be with me, or if she is frightened by or uncomfortable with this person. Once we had a nurse who came during the day. Esmé threw up every morning as soon as the nurse walked through the front door, without fail. Eventually, I got the hint and we let the nurse go.
There just aren’t a lot of caregivers and home-care nurses who do this sort of work at all… and even fewer who do it well.
Finally, other challenges in finding care stem from Esmé’s unusual medical and developmental needs. Esmé’s health changes can look very different from those in other children with similar conditions. For example, her seizures are so atypical that they went undetected by her first neurologist for over six months. So her caregivers and nurses need to be curious, intelligent, and engaged in order to care for her.
There just aren’t a lot of nurses and caregivers out there who can meet all of these needs. My backup options are limited as well, because while I can care for my typically developing family members’, friends’, and neighbors’ kids in a pinch, the reverse is not true. And all the standard options like daycare and a full day (or even partial day) of school just don’t currently exist for a child like Esmé.
The result of this is that we regularly have significant holes in our caregiving schedule. And, even when my partner and I do not have holes, we have to work under the assumption that it all might come apart at a moment’s notice, because it has before. Like this time last year? Three nurses, who had been with us for three-and-half, two-and-half and one year, respectively, all left over a period of two months due to unrelated and understandable health and personal reasons. And when it all comes apart, it isn’t easy to build back up again because there just aren’t a lot of caregivers and home-care nurses who do this sort of work at all… and even fewer who do it well.
For non-nurse caregivers, it takes a special kind of person who's willing to learn how to care for a child with significant medical needs when they themselves are not medical professionals. Taking care of Esmé requires managing tube feedings, dosing essential medications, and responding to seizures and breath-holds. Learning to do such things does not require medical training. I've learned how to do all of these things at least as well as a medical professional. However, I learned to do them because I love my daughter and also because I have no choice. It's quite another thing to take an hourly job knowing realistically that you may have to call 911 for a small fragile child who has just turned blue while under your care.
For us, in New York State, there is a Medicaid-funded program called Consumer Directed Personal Assistance Program, and this program gives us a certain number of hours of Medicaid-paid caregiving each week, which is great. However, the pay is not great, averaging around $10/hour. We can use any caregiver we like, save for either Esmé’s father or me, and we're responsible for finding, hiring, training, overseeing, and firing caregivers. There's also a series of hoops that each employee must jump through, including a pile of paperwork, HR training, vaccinations, tuberculosis tests, and a physical, which can take awhile to get up and running.
Finding someone suitable, trusting them to care for Esmé while I sleep, and training them just sometimes feels like too much to face. So there are many nights we’ve fumble through as best we can with complicated medicine, food, and water schedules. There have been many nights when I’ve been unable to sleep, even though Ezzy is, for fear of sleeping through a problem with her breathing or a seizure. And there have been many nights of Esmé waking for hours, inconsolable, unhappy anywhere but in my arms.
And, even when we have a great caregiver — which we do now — there can be long stretches of time where Esmé is too unwell to be cared for by a caregiver alone. And most days have therapy sessions and doctors appointments that I need to drive her to and from and participate in, even as her caregiver keeps Ez company in the backseat, helps me remember details for the doctors, or carts Ezzy’s chair and her bags of stuff.
In addition to our caregiver hours, we have Medicaid-paid nursing hours because of Esmé’s medical fragility. The nursing care is there to help support us in keeping Esmé safely living in our home, despite the fact that she could meet the criteria for living in a long-term care facility.
We typically use nursing hours for overnight care — where the nurses give medications, water, and food via feeding tube throughout the night on a carefully planned schedule. Esmé can wake frequently and remain awake for long spells. She's unable to be left unattended and cannot settle herself, so nurses rock, comfort, and support her needs all night long. Like our hiring of caregivers, we hire independent nurses who are paid directly by Medicaid at a higher rate than those working for agencies. So we are also in charge of finding, hiring, training, overseeing, and firing our nurses. We've looked into using an agency to do all of this for us several times in the past, but they've never had anyone to staff our hours.
Whenever I've hired for either of these positions, I've had some truly questionable applicants, including an applicant who left me waiting with my daughter for 25 minutes, casually arriving with a friend in tow still expecting to be interviewed just as I was leaving with a grumpy Esmé. Another brought her grandchildren to the interview and spent most of the time talking about the medical challenges one of them faces. We’ve hired multiple licensed nurses who were no-shows for their first shifts. It's funny, of course, on some level. But also, the job is all about my daughter’s health and safety, and helping me carry on a life beyond Esmé. Showing up on time with a mind focused on Esmé is a bare minimum requirement.
Of course we’ve had far less amusing experiences. One nurse we’d worked with for months turned out to be forging her nursing notes, misleading us about Esmé’s overnights, billing for days she didn’t work, and, at least once, lying about an injury Esmé sustained in her care. Another nurse lifted Esmé in a way that is dangerous to any child, but exceedingly so for a child as fragile and vulnerable as mine. On her first shift, another nurse accidentally and painfully pulled out my daughter’s feeding tube twice in an hour in the middle of the night, something that happens now and then even when we're all careful, but never twice in a week, let alone an hour. Both times the nurse woke me to reinsert the tube not by knocking on my door or texting me, but by opening the bedroom door, leaning in, and saying, “Hillary, wake up.” Later that night, she walked off the job. It was only the next morning I realized she had mis-dosed Esmé’s overnight medications… all of which I'd carefully laid out and labeled.
I wonder how this is sustainable. I think about how impossible so much seems under these circumstances. I think about all the things I want to do, both selfishly and in the service of my little family — have a career with regular income, give Esmé siblings to follow her through her life — and I wonder if it's possible.
Even if all goes well, training the very best of Esmé’s nurses and caregivers — and there have been a number of truly exceptional ones, mind you — takes a long time. Daytime caregivers work most of the time while I am only just in the other room. It can take weeks before they can feed Esmé independently, months before they are dosing meds on their own. Only after weeks of training can I consider leaving them on their own while I run out briefly. Night nurses tend to need less hands-on training and more training to Esmé specifically and our way of doing things. And since the nurse is there in our home overnight while we sleep, it can take awhile before I feel I can sleep properly. The longest part of the process is, of course, learning to all trust each other.
Needless to say that after some of these experiences, I didn’t have the heart to try to fill the vacancy immediately. Finding someone suitable, trusting them to care for Esmé while I sleep, and training them just sometimes feels like too much to face. So there are many nights we’ve fumble through as best we can with complicated medicine, food, and water schedules. There have been many nights when I’ve been unable to sleep, even though Ezzy is, for fear of sleeping through a problem with her breathing or a seizure. And there have been many nights of Esmé waking for hours, inconsolable, unhappy anywhere but in my arms.
I think about holding her and wondering how I could stand a moment more of her pain, thinking: Just give her a life, please let her live. Anything but losing her. Then I remember this is my life. My daughter is living. She's alive. And, like everything that has come before, we'll find our way through.
When I rock my daughter on those nights, sitting for hours, trying to edit the list of things I’ll be able to do the next morning, I wonder how this is sustainable. I think about how impossible so much seems under these circumstances. I think about all the things I want to do, both selfishly and in the service of my little family — have a career with regular income, give Esmé siblings to follow her through her life — and I wonder if it's possible.
Then I think about holding her years before, before we had night nursing, before she had an anticonvulsant holding off her seizures, before we knew what kind of odds she would beat over and over. I think about holding her and wondering how I could stand a moment more of her pain, thinking: Just give her a life, please let her live. Anything but losing her. Then I remember this is my life. My daughter is living. She's alive. And, like everything that has come before, we'll find our way through.