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How you can help your loved one with lupus

Lupus Foundation of America

Resource Content

When a person with lupus develops serious health issues and can no longer function independently, someone may need to assume the role of caregiver.

The more you know about lupus and how to cope with it, the better prepared you are to be a good caregiver. Understanding the disease can make the initial transition into caregiving a little less intimidating. It can also help you determine a caregiving plan that meets the specific needs of your loved one.

Understand Lupus

While learning about lupus is ongoing, here are some things you should focus on first:

    • Educate yourself about the nature of lupus and the symptoms of the disease. 
    • Be aware of how lupus is affecting your loved one (physically and emotionally), and pay attention to changes in symptoms or physical conditions that may suggest a flare
    • Be open to change – living with lupus usually requires certain lifestyle adjustments.
    • Be emotionally considerate -- feelings of sadness, helplessness, and uncertainties about the future are a normal part of living with chronic illness.

Help your loved one learn about lupus

Your loved one’s understanding of the disease can make a difference in how you lend support and how they prefer to receive it. By working together to understand the disease, you can create a plan to cope with lupus. Helping your loved one learn about lupus has other benefits too. Some people with lupus feel guilty about needing a caregiver and the demand that caregiving places on you. Learning more about the disease may help them understand that the impact of lupus may be too large for one person to deal with alone. Going through the learning process together also strengthens your relationship. A strong relationship can help them feel more comfortable receiving care, especially if decisions are made together about caregiving needs.

Communicate

It is normal to experience changes in moods, relationships, and activities within the family. Through it all, caregivers can use good communication skills to respond appropriately and keep up a positive attitude.  Healthy communication allows family members to connect with each other and share feelings. Here are some key points to remember:

    • Make sure you are aiming for a healthy exchange of information, which is different from venting emotions.
    • Talk about major problems caused by lupus, what is most feared about the disease, and your loved one’s needs.
    • Reach out to others. It is a good way to gain support and share feelings.
    • Be open about your needs - ask others for help.
    • It is important for you and your loved one communicate in a positive and hopeful way, but it is also important to be realistic and adjust to “a new normal”, instead of expecting “a return to normal”. Make time to talk about this transition, and how it is affecting each of you.

Create a care file 

As a caregiver, one of the most important things you can do is create a care file for your loved one. Whether you keep it in a binder, file folder or entirely electronically, this file will:

    • Provide access to essential information.
    • Aid in effective communication with health professionals.
    • House accurate, up-to-date and important information.
    • Reduce stress.
    • Save time and energy-when the caregiver is unavailable, a well maintained file can help others provide proper care for the person who is ill.

The file should be organized in such a way that you can take it to doctor’s appointments. It should be kept confidential and in a safe location. Specific information may include:

    • Personal information (such as date of birth, identification, and insurance information)
    • Your loved one’s current diagnosis and medical history
    • Doctor and other health care provider contact information
    • Doctor visits and changes in treatment
    • Names of medications, dosages, and any special precautions
    • Emergency contacts

You can create this packet on your own or you can use our care file template (PDF. 

Develop a daily care plan

A daily care plan is a list of duties and responsibilities that address the daily and long term needs of your loved one. It should be simple and descriptive. A good plan will provide instructions to those who share caregiving duties when the primary caregiver is unavailable. During stressful times, it can help avoid a potential crisis. We have included a template for a care plan that you can use. You can print and update this plan as regularly as necessary. Keep in mind the following tips when creating your care plan:

    • Identify major problems and your loved one’s health care needs.
    • Describe specific caregiving tasks and the necessary steps to complete these tasks.
    • Organize caregiver tasks into categories (for example, health care or household). Which tasks are a priority and non-negotiable?
    • List key family members or friends that can help in an emergency situation.
    • Consider community organizations that may be helpful, especially in an emergency.
    • Allow for flexibility and change in the daily care plan.

You can create this care plan on your own or use our care plan template (PDF).