- From Medicare to Medicaid, Social Security to ACA, this extensive directory of articles on financing the health care your loved one will need (whether he’s 8 or 88) is a great starting point: Lupus Foundation of America: Financial Resources for Healthcare.
- Medications will be critical for managing pain and improving quality of life, but they could be costly, depending on your health care coverage. Peruse this page for direction on accessing vital prescriptions: Prescription Assistance Programs.
- Mobile apps. Fact sheets. Symptom trackers. The Lupus Initiative offers these tools and more, tailored for the newly diagnosed and their caregivers to better understand what the road ahead with lupus may look like: Patient-Caregiver Resources.
- When you leave the doctor’s office with a diagnosis, you also leave with a hundred questions. Instead of letting them run rampant through your brain, delve into these articles on a variety of lupus topics, from pain management to pregnancy, eye issues to joint replacement surgery—and everything in between: Lupus and APS Center of Excellence: Patient Education and Resources. This directory from Talk SLE includes a Lupus Checklist, among other useful articles.
- Finding a balance, dealing with sleep deprivation, struggling with feelings of resentment and anger: at some point as a lupus caregiver, you may come face to face with these attacks on your physical and emotional wellbeing. Being a caregiver requires your full attention, but don’t lose yourself in the process. Molly’s Fund offers this useful guide: Caring for the Caregiver.
- You’ll need to set boundaries. You’ll want to meet other lupus caregivers and hear their stories while sharing yours. You’ll feel alone. Ups and downs are common in caregiving, but finding a strong support group—be it online or in real-time (preferably both)—will keep you grounded through it all. Read these self care tips from the Lupus Research Alliance. Dig deeper with this caregiver-focused resource portal from the Lupus Foundation of America. Find the Lupus Foundation chapter nearest you and be directed to support groups in your area.
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