When The Patient Is The Caregiver

Living with autoimmune diseases and the challenges they bring is enough for any one human. Then pack on raising and caring for a smaller human. And if that’s not enough for you, add two autoimmune diseases to that little person and you’ve got yourself a party. Controlling my ulcerative colitis, arthritis, uveitis, asthma, erythema nodosum, trigeminal neuralgia, allergies, and eczema is a daily challenge of trying to balance my symptoms and my life as an active mother who works and advocates. Being organized, patient, and having enough energy to get through the day can be challenging when my child has his own flare-up from a chronic condition. It’s like maneuvering through a crowded restaurant with a tray of used champagne glasses, and you are so close to the kitchen when someone walks into you and you drop the whole tray. More often than not, you feel like you are burning the candle at both ends as one family member flares up after the other heals. How can you possibly be the best caregiver when you aren’t in your best health? Here are 5 tips to help you navigate through your child’s chronic condition while living with one yourself.

Tips to take care of yourself while taking care of your child

Take a “sick day” post-sick day 

The day your child goes back to school after being in a flare for however long, make sure you take a day yourself to recuperate. Take a sick day from work to sleep, rest, and take care of your own body so that you will be able to get through the week with your child when their energy returns. If you work from home, refrain from doing anything work-related or child-related. If you are in a flare-up, take the necessary steps you need to take for your own health. Any non-emergency cleaning, grocery shopping, or errand running can wait until the following day.

An emergency network

Don’t wait until you and your child are both sick to try and find resources for help. Create a circle of resources. In order to do that, you will have to disclose your condition and your child’s. If you are comfortable with that, then gather a small group of friends/family that you can count on. Each with a specific job, such as pharmacy pick-ups, rides to the doctor, grocery shopping, and food runs. Someone who can come and sit with you and your child while you nap. This way, you are getting the rest you need and someone is looking after your child’s needs.

Organize items for a flare

Being a patient and caregiver, you probably already have organization down to a “T,” but there may be ways to make your life a little bit easier.

Ask a friend to come and help you organize your medicine cabinet. Designate a shelf for each patient. Package the meds and supplements in bagged groups, with a schedule attached. Use disposable heating and cooling packs, leaving them accessible for anyone to grab for you. Keep your electrolyte replacement boxes, bags of tea, and dry snacks accessible in the kitchen or in a container near your couch or bed, along with bottles of water. Keep all portable devices charged at night. Then keep them close by during the day in case you are unable to get to an outlet.

Order food and others supplies

Keep a gift card loaded with money in your flare box to use for ordering in food, groceries, pharmacy and any other delivery services you may need while sick. It’s often hard to save money while being a patient and a caregiver, so collect and save any gift cards you receive from birthdays, giveaways, or holidays. Place them in your flare-up box and use for sick days only.

Communicate and prepare for infusions

If you are a patient receiving biologics or supplements via infusion at a center or your doctor’s office, talk with your doctor about your child’s condition. Remember to include details such as flare-up frequency and the severity. Look into options for home infusions in your area. In some cases, it may be covered by insurance. Keeping your team of doctors in the loop about what is happening in your life will make it easier for them to treat you and accommodate your needs.

Every circumstance is different and challenging in its own way. As a mom who is both a patient and a caregiver, I empathize with your frustrations and stress. I hope that these tips will bring some relief to your situation.