When the Patient Becomes the Caregiver
Last updated: August 2023
Earlier this year, one of my favorite songs, Ironic by Alanis Morrissette, became my reality. I was sitting in my home office one morning when Luca, my best friend, called to say he was vomiting blood. Since he lived with me, I ran up the stairs to his bedroom to find him hunched over and blood on the carpet. Knowing that Luca has an autoimmune condition called eosinophilic esophagitis, I rushed to his aid. I called 911. Hours later, Luca and I were in the emergency room at the local hospital. He was weak and writhing in pain.
"Well life has a funny way of sneaking up on you. When you think everything's okay and everything's going right. And life has a funny way of helping you out when You think everything's gone wrong and everything blows up in your face." Ironic, by Alanis Morrissette.
When the patient becomes caregiver
It’s so ironic. Luca, one my other caregivers, is now the patient. Luca and I went spent four days in the hospital. I spent the evenings at home so that I could get some rest. One evening, Luca called me at home and he said, “I need emotional support.” It was ironic to me because on several occasions, I had either told Matt, my husband, or Luca that I needed emotional support.
My experience with Luca was not unusual. My husband spent several nights in that same hospital some years ago after suffering from several seizures and other times when he was suffering from severe headaches.
How to save the caregiver
Ultimately, every person in the world will be a caregiver to a loved one, but how does someone with lupus become a caregiver to someone else?
These are some of the self-care techniques that I practiced over the years with Matt and Luca:
- Walked around the hospital when I needed a break from the room.
- Gone to the gym to get some real exercise.
- Made dinner at home and would sneak it into the hospital if appropriate.
- Meditated before going to bed to stop thinking about Luca or Matt struggling with illness.
- I’ve also said no and found a substitute sitter.
What is self-care?
For some people, self-care means doing something spiritual like chanting, singing gospel music or hymns, writing, or meditating. Self-care can also mean being social. Sometimes when I was hospitalized my mother’s friends would take turns taking her to lunch or sitting with me in the room while my mother took a break. Self-care for some people means talking to a therapist or spiritual leader. Venting even be important.
One thing you shouldn’t do is put yourself second. You need to remain healthy because, eventually, your patient will come from the hospital. If they aren’t in the hospital, then you will eventually need to drive them to the doctor. If you are unhealthy and have drained all of your spoons, you won’t be able to help the patient.
Ultimately, you must remember to breathe.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?