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You’re not alone. Many others have had to learn along the way, too. The tips below reflect the collected wisdom of Thyroid Eye Disease (TED) caregivers like you.
Debby: We take walks every day, hand in hand, as we did that day, and when we got home, our life changed forever. Just like that I became a caregiver. I didn't know how to be one. Everything was happening at once. The next days, weeks, and months, I got a crash course. I gobbled up as much information about Graves’ as I could. Then I learned about Thyroid Eye Disease or Graves' Eye Disease, as it's sometimes called. The role of the caregiver suddenly dropped into my lap. It can take a toll on me. Sometimes I feel tired and helpless. Sometimes I feel angry and inadequate. Once I heard the song “Candle In The Wind” playing, I felt like a candle in a hurricane, but I can reset. Just like that birthday candle that comes back, no matter how many times it gets blown out. It's not about going back to the way things were. It's about rising up and embracing a new role, putting humor and laughter and love into my toolbox. So how do I practically help my husband with his TED using love? The word Agape, a-g-a-p-e, is defined as the highest form of love. A love that persists no matter what the circumstances. This word fits so nicely as an acronym for some simple steps and helping my loved one with TED. A, awareness of subtle changes in the eyes from day to day. G: give reminders. How did you do with your eye exercises today? Did you use eye drops? Do you have sunglasses on, etc.? A: ask him how he's feeling on a regular basis. P: point out the hazards in the sidewalks, especially stairs with patterns can be very confusing and dangerous. E: embrace my role as a caregiver and get creative on how to make life not only work, but exciting going forward. And I don't forget to take time for myself. Today, we still take our walks hand-in-hand and talk about this scary, terrible, wonderful, bumpy life and how we face it together head-on. Same walk different journey.
“It’s about putting humor, laughter, and love into my toolbox.” — Debby, TED caregiver
As a caregiver for someone with TED, you may be so focused on taking care of them that you forget to take care of yourself. Before you know it, the stress of caregiving can burn you out. It can even make you sick and unable to provide care. Fortunately, there are some simple tips caregivers can use to take care of themselves.
The Listen to Your Eyes Facebook page is a community resource for people living with or caring for someone with TED. This page offers resources, tips, support, and more. You’re not alone in caring for someone with TED. Listen to Your Eyes is a place where you can come to learn about TED and be inspired by others who are navigating their own TED journeys as patients and caregivers.
The Graves’ Disease & Thyroid Foundation is a helpful resource for caregivers. They provide ongoing conferences geared towards those who have been impacted by Graves’ disease and TED.
HelpGuide.org is a resource to help people overcome the challenges of being a caregiver by providing education on making informed decisions and tips for staying positive.
All About Vision provides a range of helpful information for caregivers, including tools on how to help someone who is visually impaired.
Practicing good self-care is important for caregivers. The Cleveland Clinic provides information on caregiver burnout and how to avoid it.
VisionAware provides helpful tips on making day-to-day life easier for people with low vision. They also provide a directory of local services and a supportive online community.
The Family Caregiver Alliance has many tools to help support caregivers, including the Caregiver Connect service. Caregiver Connect allows caregivers to connect to resources and to each other.