Support for Care Partners
You play many roles in supporting your loved one: butler, chauffeur, medical advocate, cheerleader, listener, therapist, housekeeper, and childcare provider, to name just a few. Sometimes it may feel like you're not doing enough; other times, like you lack the energy to do more. As a care partner, you understand that one of the best ways to support the person in your life living with lupus nephritis is to recognize the signs that your loved one is not feeling well.
Another way you can help? Go with your loved one to doctor's appointments. Healthcare visits can feel overwhelming to a person living with a chronic illness. By attending appointments with your loved one, you not only add valuable moral support, you also can ask questions, take notes, and provide additional information to the doctor or specialist. At the end of the day, one of the best ways to support your loved one is to simply listen. Oftentimes, listening can be just as helpful, if not more so, than offering advice.
Ways to Support Yourself
As you care for your loved one, don't forget to pay attention to your own needs. Care partner burnout is a fairly common occurrence among those caring for someone with a chronic illness. To support yourself:
- Talk to someone (a therapist, other care partner, support group member) about how you're feeling
- Set reasonable expectations for your lifestyle, knowing that flexibility is key when supporting a loved one living with lupus nephritis
- Have outlets for your own physical, mental, and emotional wellbeing
- Visit the Lupus Foundation of America Caregiver Support page for more information and resources specifically for care partners
Care Partner Perspectives
Do you have a story or comment to add to this page?
The following are quotes from people caring for loved ones with lupus nephritis. Read on to learn more about their personal stories.
As a caregiver, if they fall we want to be right there. If there's a flare up, if anything goes wrong, we want to be right there to jump into action. And it's challenging when you can't do that.
Pam, mother of person living with lupus nephritis
I have had to give up on routine and have learned to be extremely flexible.
Nittin, spouse of a person living with lupus nephritis
On care and support
I'm a super-optimistic guy. A see the glass-half-full kind of guy. She's a bit more even keel... sometimes, she needs that extra little push to see the bright side of things.
Antione, spouse of a person living with lupus nephritis
Advice for new care partners
Once I was diagnosed with lupus nephritis, it became very clear that I needed the support of my husband. I needed the support of my family members to figure out how we are going to make the accommodations we needed to change the course.
Sara, diagnosed with lupus nephritis in 2004
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