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| The Quintero Family |
In 2005, my brother Juan was diagnosed with Amyotrophic lateral sclerosis (ALS) commonly known as Lou Gehrig’s disease and was given 3 years to live. Since then, I have been documenting Juan and his family so that his two children would have the memories of their father preserved. It was not until a few years ago that I realized that all of this footage that tells Juan’s story is one that should be shared, and thus I began to edit “A Sacred Journey” (ASJ). In this documentary, the viewer not only journeys with Juan, his children, his parents and his siblings in these three years after his diagnosis but is also witness to a community mobilizing to support one of their own in need. ASJ is the powerful true story that takes place in the mostly Latino neighborhood of Lincoln Heights (LHTS), and celebrates the love and the power that manifests when a community comes together. Two and a half years into his diagnosis, with six months left to live, Juan decides to embark on a mural project. He hires a muralist, asks me to write the story and picks a 34-foot wall at his old Alma Mater Sacred Heart Elementary School (SHES), where his kids presently attend. The mural on the wall consists of a timeline of LHTS, a historical account of one of the first neighborhoods of Los Angeles, where my parents decided to raise all six of their children. The mural is broken up into 5 segments; pre-historic time to present time LHTS. What is at the core of the mural is the image of the “familia”. In ASJ we witness the birth of a mural paralleled with the progression of Juan’s illness, a family and entire community struggling with letting their loved one go to the relentless grip of this dreadful disease. ASJ is told through my eyes as Juan’s brother and best friend. My vision is to show how one man’s struggle can unite thousands and how my family has taken their loved one’s diagnosis and turned a potential heartache into a blessing as well.
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Caregivers often put the needs of their loved ones before themselves, and over time that selflessness has an impact – both inspirational and challenging. They find themselves in the ranks of a "silent workforce" that includes 66 million Americans who serve as unpaid caregivers to an adult family member, a child with special needs or a friend. Ironically, these caregivers feel alone in their struggles.
I am a caregiver myself - our young son has Down Syndrome, with both speech and motor apraxia, which means at this time he is unable to speak verbally (seizures robbed him of his speech), and has great difficulty being able to repeat learned purposeful movements, which includes sign language - his hands just don't work quite right. Communication has been our major struggle - and getting others on board that he HAS things to say; that he is an intelligent child who happens to be locked into a body that doesn't function correctly. We often see others dismiss him as he is unable to communicate effectively, because they do not understand how to communicate with him. Our goal for him is for him to live as independently as he can as an adult - but to what degree he will be able to do that remains to be seen, as he is still so young. He may or may not be dependent on us for the rest of his life. Being a caregiver is stressful, no doubt about that - not just physical part of caregiving - bathing, diapers, dressing, feeding - but also diet, supplements, therapies, and of course the battle with medical insurance. It can get lonely, too: I have seen people close to us drift away over the years as they are either uncomfortable with our son's needs, or just don't know how to handle it, and may be too embarrassed to ask. I am thankful for the family and friends who have chosen to take an active part in our son's life!
Having this life experience gives me some insight into Ernesto's film, A Sacred Journey: a documentary that hits close to home for all who care for a loved one. I was given the opportunity to interview Ernesto to hear his thoughts about the role of caregivers, those who step in and help family and friends for various amounts of time, and why “A Sacred Journey” is such an important film:
Q. How did Juan come up with the idea of doing a mural?
Juan overheard the principal of our elementary school wanting a mural on one of the school walls, and Juan answered her request. Not only was he giving something back to the school and community, but this was also his way of leaving a memory, an act that would allow us to remember him.
Q. What a great idea to have the mural at the school! Was the school on board with the idea right away?
The school had the desire to paint the mural but didn’t have the resources. Juan, with our help, made it happen. The content on the wall is full of our memories, stories and a history timeline of the neighborhood we grew up, Lincoln Heights. Lincoln Heights was one of the first neighborhoods in Los Angeles.
Unless that wall comes down, the students walk by a history lesson daily that does not exist in their textbooks.
Q. What has been your most inspirational moment of this journey?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 indispensable. At any 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 sponsorships. 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 CareConcepts 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%).
Q. What has been the most difficult moment of this journey?
Nobody teaches you how to be a caregiver. We were forced to learn. 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.
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 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 rsvp@pdcpr.net.
Please visit asacredjourneyfilm.com for frequent updates and more information about the film. You can also visit A Sacred Journey on Facebook.
2 comments:
Love to read this looks like good reading
My brother-in-law's father passed away of Lou Gehrig’s disease. I'd love to see this. He was such a great man.
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