We will all be CAREgivers at some point in our lives, whether it be to a parent, a spouse, or a child. When you are a parent of a chronically ill child, it is likely that your CAREgiving duties will overlap, because your child needs constant care, but other people in your life get sick as well. It can feel overwhelming and isolating all at the same time.
I’ve been thinking a lot about what being a caregiver means, and I’ve come up with a helpful acronym. A CAREgiver Coordiantes, Advocates, Manages Resources and Educates:
Coordinate. You coordinate your child’s care. You arrange for doctors’ appointments, other therapists appointments, prescriptions, food and drink limitations or special considerations. You calibrate any medical devices that your child needs. You coordinate the care that is necessary daily, weekly, monthly yearly: finding the people and the products that will best serve your child.
Advocate. You make sure your child has what they need to be successful in all areas of their life. You talk to your school administrators, you request an IEP (Individual Education Plan), or a 504 (Individual Medical Plan). If your child needs certain accommodations, you arrange for them, whether it is a nut-free table at the school lunchroom, or an extra ramp to enter a room more smoothly. Advocating also means making sure the janitor doesn’t wipe the peanut tables and the peanut-free tables with the same sponge. In my case, advocating means asking the school nurse to write a letter home at the beginning of the school year to remind parents to keep their kids home if they are sick, because they can put my daughter in the hospital. It can also mean speaking out for other children who have the same medical condition, or one similar. Additionally, it might mean joining a Family Advisory Council or advocacy group in your child’s specific illness, to make the world a better place in the future for your kid and those like your kid. It’s a large umbrella.
Resource management. I don’t need to tell you this. Medical supplies are expensive, even if they’re covered by insurance. My daughter wears two medical devices, neither of which are fully covered by insurance. Also not covered are the tegaderm films that go underneath each device. Occasionally the devices cause a skin infection, so we have to make sure the certain antibiotic topical ointment that works is always at home and always available. Her anti-rejection meds are covered by insurance but her supplements (that the anti-rejection meds strip from the body) are not. Quarterly visits with specialists are necessary, along with their co-pays and the occasional trip to the Emergency Room rounds out the payment. What isn’t said are the things that aren’t bought or are pushed off because of the payments that fulfill medical need. I’ve had the same snow boots for twenty years and I live in New England, so they get used. Most of my clothes come from thrift shops. Michael wears his shoes until literally there are holes in the bottom. This is how you make money stretch. And I consider us to be very lucky, we live a good life, with good food and a warm home.
Educate. Parents of chronically ill kids are constantly educating. We are educating the other adults in our child’s life: for birthday parties and sleepovers and soccer games. When the time is right, parents educate their children about their illness and (hopefully) help them slowly transition to self-care. We often educate the public, bringing awareness to our child’s condition, or the condition of those like him or her. We also educate ourselves, we are mini-experts on our child’s diagnosis and condition, we keep up on the newest technologies and research studies.
This is what we do both as parents and as caregivers, but it’s amplified when you are both parenting your child, and also are a CAREgiver to them. Now, add onto the fact that other people get sick too, in the short and the long run. What happens when your spouse or your parent, or God forbid, another child gets an extended illness. Now all of your specialized training gets stretched or even thrown out the window. You may know all there is to know about your child’s disease, but you’re not a medical professional, you don’t know all the illnesses. You need to learn a new language, a new set of doctors, a new protocol of medicine.
It’s a terrible burden, and it’s constantly shifting. It reminds me of the picture of the world, that is being held up by elephants on the back of a turtle. It’s heavy, unpredictable and unrelenting.
I hate to be gloomy about this because there are beautiful moments to being present in the difficult moments of your loved ones, but it takes practice to see the beautiful moments, the sunrises and the warm cups of coffee, the smiles and the small favors. None of us knew what we were signing up for when we decided to become parents, there was no instruction manual or warning label.
I take the month of November as a month of gratitude, and write down one thing a day that I’m grateful for. Some things are quite large and some are tiny. but it’s an actual daily vigilance, because let’s face it, some days really suck. But even in the worst days there is something to be thankful for if you look hard enough.
Good luck, CAREgiver. Try to find something beautiful in each day, something you’re grateful for.