Living well with lupus

How can a caregiver be prepared for an emergency?

Lupus can be unpredictable, and you may need to take immediate action if a flare or other critical health complication endangers the health of your loved one.

A binder divided into monthly tabs can keep you organized and ready in case of an emergency. Items to include are:

  • Personal identification, including name and birth date
  • Emergency contacts
  • Names, address, and contacts of regular doctors and specialists
  • Health insurance information (such as member and group plan numbers)
  • Living will and advance directives
  • Organ donor authorization
  • List of any surgeries and dates they were performed
  • Current medications and any vitamin or herbal supplements taken on a regular basis, and the dosages
  • Immunizations and the dates received
  • Any allergies
  • Family health history (parents, aunts/uncles, and siblings)
  • Important test results such as blood work
  • Vision and dental records
  • Records and notes from the most recent physical examination and notes on symptoms or flares
  • Any other information about health, including diet and exercise regimens

Keep a “to go bag” next to your binder stocked with the following:

  • Toiletries
  • Change of clothes
  • Phone chargers
  • Books
  • Anything else you may need for a possible extended hospital stay

If your loved one with lupus needs to go to the doctor you will most likely be the one to advocate and accompany them. It will help if you make a habit of writing down symptoms, flares, and side effects that your loved one experiences. By tracking the date and time of the event, level of pain, fatigue, stressors, and medications, you and your loved one’s doctors can be better prepared to handle an emergency.

If your loved one does need to be admitted to the hospital, enlist the support of friends and family to help with your other responsibilities, so that you can give your attention to being the on-site advocate for your loved one. By having a social network in place, and keeping a detailed binder, your helpers will be able to lend a hand as needed. This will greatly relieve the stress of the emergency, for both you and your loved one.

Medically reviewed on August 15, 2013