It’s nearing the holiday season, and that means it’s time to focus on family and quality time. Especially during this time, it’s important to appreciate the dedicated caregivers working tirelessly for their family. We must never underestimate the strength that caregivers have for providing support to those who need it most, nor the toll that it takes upon them both emotionally and physically.
This National Family Caregivers Month, the ALS Association of Texas is recognizing, supporting and empowering family caregivers. In this third and final installment to our caregiver series, let’s dive into a caregiver perspective that’s frequently overlooked.
We mostly hear of advanced illnesses throwing spouses and life partners into the primary caregiver role for their loved ones. However, we rarely acknowledge the many young adults, youth and children that are providing care for a parent.
Approximately 1.4 million children and youth from ages 8 to 18 in the U.S. are familiar caregivers of a family member. They support both activities of daily living (ADLs) and instrumental activities of daily living (IADLs). This includes managing complex assistive devices, feeding, bathing and toileting, among other activities.
In Texas, we know that there are more than 2,500 youth and children involved in the ALS experience.
The ALS Association of Texas worked last year developing educational resources and programming for young caregivers involved in the ALS journey. During this process, a phenomenal group of young leaders emerged, and just like ALS, they don’t stop. Abby Estrada, LCSW, Jothi Gupta, Connor Hadley and Gabriel Poveda all know first-hand what it’s like caring for a loved one with ALS, specifically their fathers. Keep reading to hear more about their stories:
Abby Estrada, LCSW
Abby Estrada’s father was received his ALS diagnosis while she was in high school. She helped provide much of his care until he passed away while she was in college. Abby took her experience and passion for helping others into her career as a licensed clinical social worker in Texas. Abby heavily involves herself in our fAmiLy talkS workshops and is looking forward to also being a therapeutic resource for our ALS Texas community as a LCSW.
When it comes to those difficult but crucial talks about ALS, Abby shared, “Keep the conversation ongoing with your children. Check in with them, especially at times when ALS progresses and your ‘new normal’ is changing. Listen—perhaps the best thing you can do is be there and listen. Your children may be angry, confused or sad. Hear them and allow them their feelings.”
17-year-old Jothi Gupta launched the It’s Okay to Not Be Okay: A Closer Look at Family Illness and How to Navigate It podcast earlier this year. Perseverance is also way of life for her family, who as a whole, has shared their poignant journey with ALS with our community. Jothi is also the editor-in-chief of her school newspaper, a leader on her school’s debate team, and co-founder (along with her sister) of the RG Foundation for ALS Awareness.
“This is such a painful disease to watch slowly take my Dad away and we want to do everything in our power to fight back,” she shared. Jothi also noted that she is passionate about resiliency and is looking forward to connecting with and supporting other teen caregivers in Texas.
Connor Hadley was a pre-teen when his Dad, Collin, was diagnosed with ALS. He since has watched ALS progress and rob his Dad of so much. Now at the age of 17, virtually every day brings a new normal.
The Hadley family believes in making each day count. Connor just attended his last youth church camp and loves playing football. He still puts his experience as young caregiver into action. Connor believes he has a gift of helping people do the right thing and wants to support youth and children in Texas. He added that while he is a teenager knocking on the door of adulthood, he was much younger when his Dad was first diagnosed with ALS, and he believes he can really relate to that age group.
Gabriel Poveda is wise beyond his 20 years and has likely experienced more than just about anyone in his sophomore class at UT Austin. This year’s National Family Caregivers month theme is Caregiving Around the Clock, and Gabriel can certainly attest to this being true.
“My Dad was diagnosed November 14, 2017. I had just turned 17 as well. From 2017 to August of 2019, I was very involved in my father’s day-to-day caregiving,.” Gabriel Shared. At the time, he was still in high school. “I had to make sure that I got home on time so I could give him is IsoSource feedings. I had early release at school, and got home around 1:00, and would stay with my Dad until about 6:00pm when my Mom got home from work, and then she would take over.”
Young caregivers experience an impact on their friendships, relationships, clubs, etc., Gabriel added, “You forget about a lot of things; emotions foremost among them, but also other relationships, and other bits of everyday life that you previously thought were important.”
Gabriel learned about a student-led program at UT Austin which pairs young people with senior citizens for weekly/bi-weekly chats. “It’s an inspiring group of my peers and it got me thinking: why not for ALS? It would require, time, money, and most importantly people, but I believe it is plausible.”
So what’s next for young caregivers?
We’re taking Gabriel’s feedback to heart! In January 2021, ALS Texas will launch online peer support groups for young caregivers involved in the ALS journey. The inspiring young people above will co-facilitate this group, continuing to change the world one day at a time. Each of them want to connect with other young people who feels isolated and alone. Young caregivers in Texas aren’t alone.
Gabriel extends this invitation to all of our ALS Texas young caregivers, “I encourage you to reach out… we’re starting online peer support groups in January, and we’d like for you to be a part of it.”