Sometimes our purpose in this life is to take a Journey. “A Sacred Journey” is a film by Ernesto Quintero chronicling the struggles befallen his brother Juan, diagnosed with ALS (Amyotrophic Lateral Sclerosis).
“Sometimes Love is the only cure.” – Ernesto Quintero
Q: Tell me about your film “A Sacred Journey” and how you’re sharing it with the care-giving community.
- My film “A Sacred Journey” documents the story of my brother’s fight with ALS since his diagnosis in 2005. The viewer not only journeys with Juan, his children, his parents and his siblings in the years after his diagnosis, but also witnesses a powerful, inspiring true story that takes place in the mostly Latino neighborhood of Lincoln Heights, and celebrates the love, unification and power that manifests when a family and a community comes together turning heartache into a blessing.
- We’re bringing the caregiver community together for screenings of my film to show they are not alone. In addition to giving them a night off of caregiving duties to honor and celebrate them, we hope they enjoy a little pampering and camaraderie with other caregivers in the community. We’re also hosting a panel discussion after the screening with experts, advocates and other caregivers about “When Care Comes Home,” exploring the challenges and rewards of caregiving. We have already screened “A Sacred Journey” in Chicago and Los Angeles, and are heading to Washington D.C. in November during National Family Caregiver Month. Please join me on November 13th at 6:30 p.m. at the West End Cinema in Washington, D.C. Click here to view the invitation or RSVP at firstname.lastname@example.org.
- Please visit asacredjourneyfilm.com for frequent updates and more information about the film.
Q. At what point in your life did you know you had/wanted to make this movie?
When Juan was diagnosed with ALS in 2005, I immediately wanted to make this film. I felt that the camera would make Juan feel valuable in moments where his depression was deep. I want to get closer to him and used the camera as a tool to force me to come around more. I wanted to celebrate my brother’s life. I also felt that this was a way to raise awareness about ALS. Lastly, I wanted to use the film as a healing tool for my family, friends and especially his kids. It wasn’t until Clorox stepped in that I realized I had a film that spoke to the masses.
Q. What resources and products do you and your family use to help in your caregiving roles?
The “When Care Comes Home” survey conducted by Clorox CareConcepts and the Caregiver Action Network found that cleanliness is very important to those in the caregiving role (85 percent) and that’s true for my family as well. But more than one in three caregivers report that it is confusing to select cleaning and personal care products (37 percent) and it is difficult to find them (36 percent). In fact, half (50 percent) of caregivers wish home health care products were easier to find. We’re happy that the new Clorox CareConcepts home health care products are simple to find on Amazon.com, Drugstores.com and near the pharmacy section at select drug stores nationwide.
The Clorox CareConcepts products that we use the most around my brother are the Germ Control Kit and the Home Care Clean-Up Kit. Bleach has been in my family since I can remember so it’s nice to have new products from a company we’re familiar with.
Q. Do you believe in a faith that guides us/you through this life?
I trust and believe in divine timing. I believe that our creator gives us everything we need in order to understand ourselves in a much deeper manner. We choose everything that happens to us before we physically come to this universe. I believe that Juan chose ALS as a teaching tool for himself and all those around him. I know it sounds difficult to understand and Juan might not agree with me, but I feel that ALS has brought us all closer to our spirituality. Juan’s experience has not gone in vain. He has blessed thousands. I chose to venture with Juan as a brother with ALS to learn to love myself, to practice patience and to have compassion.
Q. Have you always been a caregiver of sorts, even as a young child or teenager growing up?
My first and only other experience as a caregiver has been around my nephew John Paul (JP). JP is Juan’s son and was diagnosed at birth with Diamond Blackfan Anemia. I know, two distinct illnesses in one family, pretty tragic! In brief, JP’s bone marrow does not produce red blood cells. John Paul, who’s now 13, lives off of blood transfusions and was given 30 years to live. My caregiving experience to this little boy is much different than it is with Juan, but nevertheless I have been presently caring for JP since birth.
Nobody teaches you how to be a caregiver. We were forced to learn how to care for my brother. It was new and nobody taught us how to care for him and taking care of someone with ALS is complex. Learning about meds, equipment, finances and nursing care were all a new language to us. It was trial and error and the ALS Foundation at the time was somewhat helpful, but it was not enough.
WhenCareComesHome.com helped remove those obstacles. It offers supportive tools and products to help empower those caring for a loved one. Caregivers will find links to well-respected partners, such as Family Caregivers Alliance (FCA) and Caregiver Action Network (CAN), as well as educational content. Through the Clorox® Care Council, a panel of caregivers, advocates and experts offer guidance, perspective and encouragement.
WhenCareComesHome.com is a good source for any caregiver who wants to be part of something bigger. It helps when you can reach out for help and somebody answers. It’s nice to know that somebody is thinking along the lines of strengthening the Caregiver community.