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Home > ALS’s Youngest Caregivers: Caring with Love

ALS’s Youngest Caregivers: Caring with Love

by | Jan 25, 2022

According to a 2005 report by the National Alliance for Caregiving, there are at least 1.3 million caregiving youth between the ages of 8 and 18 in the United States. Friends, this report was more than 15 years ago! Today, we know for certain that this statistic is very low; not only have the reported numbers increased, but many families are also reluctant to share their caregiving situation. Some families are embarrassed by their need for assistance and are hesitant to volunteer information on their household needs with school or social services officials. There are also many emotions and feelings involved, such as guilt, pride, denial, and fear. This means that young caregivers may be struggling in school or at home, and potential resources—like teachers or special support programs—are unable to offer assistance that may help relieve some of the stress.

In 2021, Forbes magazine shared information gathered by the new Global Carer Well-Being Index from Embracing Carers, highlighting that “25% of Gen Z and Millennial caregivers were in caregiving roles for the first time during the pandemic, compared with 15% of Gen X and Boomer caregivers. Overall, 20% of caregivers surveyed were new to caregiving and 60% of them were Gen Z or Millennials.”

In Texas, we know that there are close to 3,000 young adults under 30, youth, and children involved in the ALS experience.

Young caregivers are involved with both the activities of daily living (ADLs) and instrumental activities of daily living (IADLs), which include managing complex assistive devices, feeding, bathing and toileting.

This February, we are shining a loving spotlight on our ALS Texas young caregivers, and how they are rising to the challenge and supporting their families and loved ones living with ALS- with pride, advocacy, determination, empathy, and so much more! They are truly Caring With Love.

Before give you all of the information you need to save the dates of our calendar of events, we’d first like to share with you an incredible quote from Gabriel Poveda; insight that only someone who at a young age provided care for a parent or loved one is able to share with others. Gabriel’s father ended is battle with ALS in 2020, and Gabriel is now a senior at UT Austin, and in the Navy ROTC.

Words of empowerment and support for young caregivers:

 “You’re going to be a remarkably strong individual. For young caregivers, I really wish I could tell you that there’s some sort of personal…some sort of something that makes it a little bit worth it, but what that is, is very little.  The truth is-it’s going to be hard; very, very hard. The only personal solace I can genuinely give you is that you ARE going to be remarkably able to connect with other human beings.  You emerge with a sense of pain that makes us more empathetic and makes us feel closer to other people. Alongside your peers, you’re going to find that you enjoy more than them. It’s going to be bittersweet, but you’re going to enjoy walking, talking, and eating more than they ever are.  You’re going to enjoy having a family and having people you love more than they ever will…and when people are suffering, you’re going to be able to help them more than anyone else will.”- Gabriel Poveda

We invite you to join us for all our February Caring with Love events.  You will be inspired, empowered, hopeful, and connected to a community – a family that is here for you no matter what.

Tonya Hitschmann, Director of Community Programs

Caring with Love Virtual Events

We’re hosted several exciting events in February 2022 for Caring with Love month. Watch the recordings below!

Facebook Live Interview with Ronan Kotiya

Meet Ronan Kotiya, a young caregiver to his father, Rupesh, who was diagnosed with ALS in 2014. Ronan is passionate about raising awareness for ALS. He even published a book Rupesh J. Kotiya vs. ALS : My Dad’s Fight For Survival to provide an insight into what it’s like to have someone with ALS in your life. Way to go Ronan for being a young leader in the fight against ALS!

Trauma-Informed Yoga for Kids with Yoga N Da Hood

Youth today face so much trauma, including trauma connected with the ALS experience. YOGA N DA HOOD WELLNESS is dedicated to providing social and emotional learning through YOGA and MINDFULNESS for children of all ages. Through the practice of Trauma-Informed Yoga and Mindfulness, youth can develop stress and trauma management, self-esteem, enhanced strength and flexibility, and enhanced concentration and memory. Thank you to Mitsubishi Tanabe Pharma America for sponsoring this event!

Young Caregiver Panel Discussion

Join ALS Texas as we visit with some of our young caregivers throughout the state, in an open and honest discussion that all families will want to hear. We also encourage you to bring your family’s questions for the panel. We are all better and stronger together!

How ALS Patients Can Help

Once you’ve been diagnosed with ALS, it’s easy to feel like you just don’t have many options, but there are ways you can make a difference.

How You Can Help People With ALS

We all have a part to play in the fight against ALS! Your generous support funds critical research for better treatments and a cure for this disease. Here are a few ways you can help: