One Essential Strategy Every Rare Disease Caregiver Needs

I’ve shared before about taking on a new role: not only am I a rare disease patient, but I am now also a caregiver for my mother. I’m fortunate to coordinate care with my father, and together we’ve needed to increase our support for her this past year. While my father takes her to most of her routine visits, I step in to attend appointments as needed. But as our caregiving responsibilities expanded, I hit a few unexpected administrative hurdles.

Navigating administrative challenges

My mother signed consent forms with most of her healthcare providers to share information with me. However, when severe chronic fatigue and brain fog kick in, it’s tough for her to remember which offices have that paperwork on file and which don't. She also hasn't set up online patient portal access for all of her care sites—which means I can't access them either.

Tracking frequent blood work and ongoing treatment schedules is critical. While I could call each of her providers to verify if she's consented—like many dealing with a complex rare disease, she sees a multitude of specialists and doctors. Because I don't attend every single appointment, I found myself restrained by memory gaps, missing portal logins, and a lingering lag in getting communication permissions sorted out.

The one-appointment strategy

These challenges led me to one crucial strategy when taking on a medical caregiving role for a loved one with a rare disease: attend at least one medical appointment with your loved one for every single provider in their care network. This includes their primary hematology clinic, outpatient infusion center, lab facilities, specialty pharmacy coordinators, and primary care team.

Building a direct line of communication

By sitting in on just one appointment per site, you can introduce yourself, ensure consent forms are signed and filed on-site, request patient portal access, and establish a clear baseline understanding of their treatment plan. Even if you don't attend subsequent visits, you’ve built a direct line of communication for follow-up care and pressing questions.

Balancing support with patient independence

This simple step would have saved me months of frustration and stress. Part of the challenge was a difference in perspective—my parents' sense of urgency around administrative tasks didn't always match mine. But it’s also a delicate balancing act. My mother has full decision-making capacity, and maintaining her independence is essential. We balance this by having my parents notify me when they’d like me to contact a provider. If I feel it’s necessary to reach out at other times, I discuss it with my mother first to get her explicit permission. This keeps her in the driver’s seat of her own healthcare while ensuring she gets the support she needs.

Moving forward

Now that I’ve pinpointed the root cause of our communication bottlenecks, I’m building a plan to join my mother for an upcoming appointment with each provider I haven’t met yet. Moving forward, I’ll make sure to attend the initial visit whenever a new specialist or care site is added to her team.