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.

Meet Christina, Vestibular Care Partner

Christina is a licensed clinical social worker, wife, and mom of two. Her life took an unexpected turn when her husband, Josh, was diagnosed with multiple chronic illnesses, including Meniere’s Disease, and she found herself navigating the challenging role of being a spouse, parent, and caregiver. Along the way she’s learned about the importance of self-care, resilience, and finding joy in the midst of difficult circumstances.

As a mom, Christina’s heart also goes out to her children and other kids who have a parent living with chronic illness. She’s seen firsthand the unique struggles they face, and she’s passionate about providing them with the support and resources they need to thrive.

Christina’s blog, Sunshine Parenting in Chronic Weather, is a space where she can share her experiences, insights, and strategies with others who are on a similar journey. Whether you’re a caregiver, a partner, a parent, or someone living with chronic illness yourself, you can find encouragement, validation, and practical tips there.

When she’s not working or writing, you can usually find Christina behind my camera lens, capturing the beauty and joy in everyday moments. She also loves traveling with her family and creating lasting memories together, no matter what challenges they may be facing.

Her family’s story

In the summer of Covid, 2020 Christina was getting ready to head back to work at an elementary school. Her mind was spinning about the potential dangers, both real and imagined, putting her on edge.

On August 23, 2020 Christina’s husband, Josh, headed out for a bike ride. Christina was playing referee to her 2 and 4 year old. When Josh came home Christina headed upstairs for a well-deserved nap.

Just as she was nodding off she received a text from Josh asking her to come down to the kitchen ASAP. Groggy from being interrupted, she went downstairs and found Josh on the floor of the kitchen, unable to move after an intense bout of vomiting.

She was concerned that he was having a heart attack, but he insisted it was only dehydration. So she gave him some food and water and managed to get him upstairs to bed. By early evening he seemed to have recovered.

Fast forward to later in the week, and Josh’s world began to spin. Again, Christina was concerned that something was seriously wrong, but Josh insisted that his electrolytes were just off. The week went by and he seemed to be OK.

Then the big one hit.

Josh had taken their kids to the zoo when Christina got a text from him that made her heart stop – “I need you to come here right now” it said.

He told her he was at a park near the zoo with the kids when suddenly everything started spinning. He somehow got them out of there, swaying and stumbling, but safely to the car.

Christina left work in a frenzy and raced to the zoo. When she got there she found them in the parking lot, kids buckled in their seats, and Josh throwing up and crying in the front seat. Innocent as ever, the kids kept asking why they couldn’t go to the zoo. Christina told them that daddy wasn’t feeling well while holding in her tears.

Josh’s vertigo episodes happened more frequently after that. Eventually, Christina convinced Josh to call the doctor. After a bunch of tests, including an MRI, they gave him a potential diagnosis: Meniere’s Disease. Finally! They had a name for what was going on. She felt a wave of relief because, she thought, with a diagnosis comes a cure, right?

When she learned that there is no cure she decided to do some research. What else could it be? Is there anything treatable?

Josh had a follow-up appointment with his doctor’s assistant, who ran a few more tests. He received a new diagnosis of benign paroxysmal positional vertigo (BPPV). Christina was optimistic, hoping this meant that a simple maneuver could fix everything and their lives would go back to normal.

They did the Epley maneuver on Josh and said he had to sleep sitting up for three days. A few days later Josh found himself lying in the grass outside the dentist’s office because he couldn't stand up.

Since then, Josh has received several other diagnoses, including TMJ, sleep apnea, vestibular migraines, and Ankylosing Spondylitis.

It’s been three years, which equates to half their daughter’s life, ¾ of their son’s life, and half of their marriage. In the midst of these challenges, there have been glimpses of brightness. Moments of closeness, resilience, and unexpected joy that have helped them navigate this difficult journey together.

Recognizing the challenges of living with a person with chronic vestibular symptoms, Christina wanted to create a place where other care partners could talk freely and receive validation and support. Christina now moderates VeDA’s private Facebook group for vestibular care partners called Vestibular Voices of Care, and leads an online support group called Supporting Loved Ones.

Thanks to Christina for being a voice for spouses, parents, and others whose loved ones struggle with dizziness, vertigo, and other debilitating symptoms of vestibular dysfunction.

Listen to Christina on VeDA's Podcast

Christina was a recent guest on VeDA's ICU - "I See You" podcast where they discuss the role of care partners in the vestibular journey.

Resources for Care Partners

It can be difficult to understand what your loved on is going through. It can also be difficult to acknowledge your own needs and practice self-care. VeDA has resources to educate care partners about what it's like to live with a chronic vestibular disorder, as well as support for YOU.

Ways for patients to get involved in C4C:

CARE PARTNER TIP

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 facebook.com/groups/vestibularcarer.

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.