A Caregiver's Guide to Lupus

When it comes time to take care of someone who’s lost independence due to health or age problems, there is always a family member who will step up and put their life on hold. There will be unexpected and difficult challenges of maintaining another person’s health, daily routines, finances, and medical concerns. And while you know you have the best intentions, there will be some days when it feels like the weight of the world is bearing on your shoulders.

Despite all of the daily stresses, being a caregiver for someone with lupus can be an enriching, powerful, and rewarding experience for all involved. Caregiving will change your perspective on life, and will help you better understand your goals when it comes to your health. Caring for someone else can influence your life, relationships, and personal journey.

You are not alone in caring for your loved one with lupus. Once someone has developed serious health issues with lupus and can no longer function independently, there needs to be someone there to take care of them. Every lupus diagnosis is different, and care needs vary. You may provide day to day care or just help someone go to the doctor or run errands. Your primary duty, however, is emotional support.

To be an effective caregiver, you must first understand what lupus is. You need to be cognizant of how lupus affects your loved one; mentally, emotionally, and physically. Changes come all the time in the symptoms of their physical conditions, and these changes may also impact moods and mental states. Make sure you are monitoring the symptoms and signs of lupus, so you don’t miss something vital.

With all the changes that happen to someone with lupus, communication is key. Use your communication skills to make the right choices and responses and do keep up a positive attitude. Communicate with other family members and friends so they can help when needed.

If you have lupus, don’t feel ashamed of your condition. Let others help and be open about what you need. Talk with your caregivers and loved ones in a positive way but do be realistic about your symptoms. Exchange information and let them how you feel. You are not venting, just informing. Let someone else know your fears and let them deal with your needs.

Tips for caregivers: How to effectively keep information

You may have the best memory in the world, but there are still things you will forget when you are the caregiver for someone with lupus. The Caregiver Toolkit from the Lupus Foundation of America suggests you use your file to inform, help, unify, reduce stress, and save time. Information in your caregiver file should be:

• Personal information like date of birth, insurance information, identification
• Current medical history including diagnoses
• Contact information for all medical professionals
• Date of doctor visits and treatment changes
• Names of medications include dosages and special instructions
• Emergency contacts
• Your file also needs to have a daily care plan. A care plan is great in case someone else needs to take over care from you or if you share caregiving.
• Make a list of major problems and the patients’ health care needs.
• Describe specific tasks and the steps needed to finish these tasks.
• Organize your caregiving tasks into categories (like health care or household chores).
• Make a list of family members of friends who can help in an emergency.
• Make a list of community organizations and support groups that can be helpful and used in an emergency.

Always be flexible and ready to make changes in daily care plans.