Caring for the Carer

Thanks to our Caregiving Heros

Celebrating Vestibular Care Partners

November is caregiver awareness month, an opportunity to focus on and celebrate all those who support vestibular patients. To recognize those individuals who provide caregiving support to a family member or loved one struggling with vestibular dysfunction, we are celebrating Caring for the Carer (C4C).

Family care partners are the foundation of long-term care nationwide, and being a care partner comes with a sometimes high emotional, psychological, social, and financial price. Oftentimes, family and friends are diverse, representing almost every age, gender, race, and ethnicity, and are sometimes overlooked. Together, they share the challenges and rewards of supporting a loved one in need. However, the condition and care requirements of their loved ones, as well as their own circumstances, personal strengths, and resources, are all factors that make the caring experience different for each individual.  

The vestibular community is full of caring, dedicated family members, friends, loved ones, and healthcare professionals who support people living with debilitating vestibular dysfunction. VeDA understands how much care partners contribute to those with vestibular disorders, and we’ve created resources to help them.

The Carer Perspective

Family Rebalanced tells Johan's story of balancing" his relationships while struggling with vestibular disorders. On the other side of this story is Nancy, Johan's wife and partner through his vestibular journey. Here is a look into the mind of a vestibular carer:

Johan and Nancy"When Johan first got sick I wanted to help him but I didn't know how. I wished I could take his confusion, pain, and worry from him to myself but this wasn't something I could just make chicken soup and tea to soothe away.

"At Johan's lowest, he didn't want to be on this planet anymore. He talked a lot about being at peace with death and asked many questions about whether there was truly an afterlife or if it was all just darkness. I was scared to go to work and leave him alone, worried about what he may do while I was out.

"Many aspects of our life has changed since Johan got sick, from the way we cook (very specific seasoning and food selection) to how we travel (ensuring we have the proper earplugs, nausea bracelets, pills, etc). Routine is super important. At the very beginning, our routine was strict just to keep our daily life balanced. Watching what I said so he wouldn't get frustrated or mad and get head pressure. Ensuring he has gloves on every single night so his Renauds don't get worse. Cold showers in the morning, warm showers before bed. I watched from a distance to make sure he took his pills (he had a tough time at the beginning as he didn't want to go the medicine route). I stopped drinking to support him as he can't drink due to all of the medicine he is on (now I do it for myself). I always check in to see how he is feeling so we can slow down or stop what we are doing so he can balance himself.

"To care for myself, I make do spa nights at home, get massages, and find ways to take time for myself.

"If I could tell my past self anything, it would be to do your research, be strong, and be patient. Hang in there, things will get better, and most importantly, pray as God hears our prayers!"

Life Rebalanced Chronicles Family Stories


Sharing the Pain

Struggling with a vestibular disorder is life altering. For Etta, when she was too sick to get out of bed it changed the life of both her and her husband Mike. The journey of adapting to life with a chronic condition was shared between Mike and Etta.

Family Rebalanced

The onset of a vestibular condition changes everything, including your relationships. When Johan first experienced vestibular dysfunction felt like he was letting his family down. In Family Rebalanced he shares how he learned to be vulnerable and accept the love, support, and compassion from those closest to him.

Ways to get involved in C4C:


The best care partner tip we can offer is to take care of yourself so that you can be present to fully support your loved one. Engage in self-care without feeling guilty.  Ask yourself

    • Are you getting enough rest? 
    • Do you go out and do fun things just for yourself, even if your loved one can't participate? 
    • Are you eating right, exercising, and taking care of your own physical and mental health?
    • Do you have enough support?

VeDA has a Facebook support group called Vestibular Voices of Care dedicated to the specific challenges and rewards of vestibular care partners.  Join them at

Balance Hero

A big part of C4C is our Balance Hero Program, which recognizes people who have gone above and beyond in the assistance of vestibular patients. During C4C you can shine a spotlight on your care partners and their stories.  Balance Heroes may come from any role within the vestibular community, including but not limited to patients, care partners, family members, supportive friends, coworkers, or healthcare providers.

To stay up to date on all things vestibular, including the Balance Hero awards and Caring for the Carer, subscribe to VeDA's free monthly e-newsletter, V-News.