Tips For Lupus Caregivers
Last updated: August 2023
Having a loved one diagnosed with lupus can be extremely overwhelming. The physical and emotional demands of being a caregiver to a parent, spouse, sibling, child, or friend with a chronic illness can be a lot to manage. Fortunately, there are ways to make carrying out this role easier.
Educate yourself about lupus
One of the best things you can do is to educate yourself about lupus. Learning all you can about the disease, its progression, and symptoms will give you a better understanding of what your loved one is experiencing. Spend time talking about the disease with your loved one. When everyone learns about the disease it can help it feel less frightening. Understanding lupus can also help you know what symptoms are typical for your loved one and what is out of the ordinary and may suggest a flare.1
Communicate with loved ones
Talk openly and honestly with your loved one. This is a lot for both of you and you will each feel a variety of different emotions at different times. There can be sadness at the loss of health and freedom, frustration at what the disease demands and depression as you each consider the future impact of lupus on your life. Discussing what the disease requires now and what changes may come later can help you both be prepared to adjust as lupus progresses. Be compassionate toward yourself and your loved one as you navigate the good and bad days.1
Keep notes about your health
Having a system for keeping medical information about your loved one can help reduce the stress around doctor appointments. This can be a digital file or a hard copy you keep on hand. Keeping the most current information about your loved one’s health in one place can help you communicate more easily with their medical team. It should be easy for you or another caregiver to access and keep all the basic information in one place. Here is a list of some possible items to include:1
- Personal information (birth date, insurance policy)
- Doctor information (name, specialty, contact number)
- Preferred hospital or clinic (if applicable)
- Medical history and diagnosis
- Changes in the treatment plan
- Medications (name, dose, frequency)
- Emergency contact
Whatever you choose to include and how it is organized should be what is most useful for you when going to the appointment and in an emergency situation. Think through what you feel you need and how you prefer to have it available to you.
Create a care plan
Having a care plan written out that details the major needs of your loved one can also be helpful for managing their care, either in your absence or an emergency. Keep the list basic but specific to allow anyone to follow the set routine. Here are some ideas of items to include:1
- Medication log (what drug was given, at what time)
- Dietary log (what meals were given, at what time, what was consumed, food allergies)
- How to care for your loved one (routine description, any challenges)
- Emergency contacts (who is helpful if a substitute caregiver has questions)
Others may not do things exactly as you do them, but having an overview of the important tasks allows for some consistency in care.
When in the role of caregiver it is important to take time to care for you! It is easy to feel burned out if you do not continue to nurture your life and interests outside of caring for your loved one. Make time to go out with friends, attend your book club, and engage with your hobbies. Make an appointment for a massage, find a support group, but each day give yourself some time that is just for you. Find others who can help you with caregiving so you can take extended time away once in a while. You will be a better caregiver and feel more able to continue in this role when you take time to care for yourself.2
How are you most likely to respond when someone offers you unsolicited advice about your lupus?