Becoming a lupus caregiver
One day, your life shifts in a new direction. This direction was unwanted and it quite possibly brought a frailty to your once firm footing. Your child, brother, mother or another loved one was diagnosed with lupus.
Life is change. You are witness to that truth by a life-altering word: lupus. What that word and the disease it represents have placed at your loved one's feet produces fear and many questions. At this point, an attitude of fight not flight should be the name of the game, not only from the newly diagnosed, but also from you. Your family member or friend, has a new and permanent moniker thrust on her or him: patient. You have as well; you are now a caregiver. Beyond the fear, beyond watching the pain that is endured, beyond the tests and biopsies, you are their lifeline to normalcy, though normal has changed.
I have six children. Two have lupus. One daughter was diagnosed with this disease while finishing college. Thankfully, her organs have not been severely affected. One of my sons was not as fortunate. He, at twelve, was diagnosed with lupus affecting the kidneys (lupus nephritis). It affected him gravely. When diagnosed, he was immediately hospitalized with what would become a six month stay at the Medical University of South Carolina.
I will forever remember the element of shock at his diagnosis. My family shared tears on more than one occasion. Through six rounds of chemotherapy and extremely high levels of steroids, my son was nearly lost to us during two separate episodes. With the seriousness of this disease, there was little time to think of myself as a caregiver. I just moved. I acted. I kept up with changes in dosing and administering medication, at times more than 20 different drugs. He battled seizures; he fought off approaching death as his illness ran rampant. I held his hand. I slept in his rooms. I tried to comfort him, first and foremost. I spent much of my time in the first few years trying to make him laugh. We watched more comedies than he might have wanted; I will be the first to say I needed them too. I was afraid too. As a caregiver, you need to cheer yourself up. Find the funny in any moment possible. Laughter serves both of you.
My health faltered a bit. I missed a lot of sleep and I am sure you as caregiver do too. My eating habits deteriorated. You must focus on your nutrition as you worry about your loved one. I learned that my health directly influenced my ability to care for him. I thought I could carry on through any inconvenience (as I saw it then), such as sleep deprivation because I wasn't ill. This way of thinking gave way to poor health and made me a more fragile caretaker. You need to be physically and emotionally strong to carry yourself and your special loved one.
While knowing you must watch your health and knowing stress exists, becoming a caregiver is a change that comes naturally. Yes, there is confusing medical terminology and there are new skills to learn. You will adapt. Compassion is a part of your humanness. Nurturing, comforting and providing steady ground for another is ingrained in you.
This patient, this family member, this loved one will understand your need to care of yourself. It may not always show, but that knowledge exists. Take care of YOU for your sake and for his or her benefit. Always keep in mind that the two of you will expand an already strong and loving connection. A positive does grow from this negative.
Mary Jane Goodman-Gidens
Mary Jane is a caregiver to two children with lupus. Read Bio