Recently I had the chance to conduct an interview with Ernesto Quintero, Director of A Sacred Journey. A Sacred Journey is a story of Juan, a young man struggling with Amyotrophic Lateral Sclerosis (ALS) and the steps he and his family take in combating this fatal illness. It’s a love story between Juan and Ernesto, one of the six siblings.
There is an unspoken vow between the two that now places Ernesto in a position to question his belief system as he cares for Juan while he journeys with ALS. Juan shocks his family when he expresses his desire to give a mural to his community. With six months left to live, he embarks on a journey that allows his vision to be painted on the wall so that he is forever remembered. As the mural slowly comes alive, the disease quickly attacks Juan’s physical body.
The stages of ALS take their course and he is faced with the decision to live bedridden and dependent on an artificial ventilator and feeding tube without the ability to eat, speak or move. Beyond the race to finish the mural before it’s too late, decisions have to be made in regards to Juan’s life. Does he continue living on a ventilator or does he comfortably die in the leisure of his home?
The director, Ernesto, is the real life brother of Juan and the love he has for his brother is amazing. Below is the interview I conducted with him.
Q: What is the best advice you can give to caregivers on days when they are feeling down?
At first, 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. The website, WhenCareComesHome.com that was launched by Clorox CareConcepts isa 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. When I’m feeling down, I tell myself that things can always be worse. I take a deep breath and count my blessings. And sometimes I take action and shock myself by doing a physical activity, praying or talking to somebody.
Q: What are the rewarding parts of caregiving for you?
Caring for my brother Juan has allowed me to continue looking at myself in a very deep manner. I’ve learned to not take my life for granted. We are so indispensible. Atany given moment I can get sick. I live my life from this place of gratitude and joy as much as I can. The documentary has brought me closer to my brother. It has allowed me to examine him very closely, which in exchange forces me to examine myself. The act of doing something that I love for the sake of just that has blessed me with beautiful people, health, love and sponsorship's.
I strongly believe that I am presently a perfect example of someone doing what I love and trusting that everything else will continue falling into place.The “When Care Comes Home” survey conducted by Clorox Care Concepts and the Caregiver Action Network also found that:
- Nine out of 10 caregivers have felt needed (95%) thankful (93%), appreciated (91%) and important (88%).
- Two-thirds of caregivers believe that their role is a gift. (66%).
I have realized that no matter how much you do you will always feel that you’re not doing enough. I would suggest that you take care of yourself and continue doing what you love to do before you burn out and get sick. I’ve also learned that you cannot do it alone. Luckily I come from a big family, but even then it helps when you have others stepping in to relieve, to talk or to distract you of the potential heartache.I also recommend visiting WhenCareComesHome.com for personal stories, tips and practical suggestions they can use to feel empowered in their caregiving roles.
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.
Q: I know you have always worked on projects that are considered to be socially relevant and after watching the promo for "A Sacred Journey" at what point did you decide to make this film documenting Juan's journey?
Immediately. I felt that the camera would make Juan feel valuable in moments wherehis 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 asa 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 66 million caregivers in this nation.
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. For viewers wanting to watch “A Sacred Journey” in the future, how/where can they see it?
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 care giving duties to honorand 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 care giving.
We have already screened “A Sacred Journey” in Chicago and Los Angeles, and are heading to Washington D.C. in November for National Family Caregiver Month. Please join me on November 13th at 6:30 p.m. at the West End Cinema in Washington, D.C. RSVP at [email protected]. Please visit asacredjourneyfilm.com for frequent updates and more information about the film.
CONVERSATION