Life as an Independent Caregiver

I recently had the pleasure of meeting Ejay Bustamante, an independent caregiver at Mosaic’s Partners & Possibilities event in Phoenix. Standing near the entrance of a busy city restaurant, I took in the sight of a man with a warm, engaging smile, his arms firmly wrapped around a young man clearly in need of his full attention. He spoke softly but firmly in his ear, helping him to understand and enjoy this unfamiliar environment. Very near to him, one on each side of Ejay were two more boys, excited and chatting easily with Ejay about their festive evening ahead. A family, in every sense of the word, out for the evening just like any other family might be.

Although I had never met Ejay and his boys before, I could instantly understand the complexity of what his daily life must look like. Inside this world, time stands still as you become lost in the minutia of getting through the day. Any small activity we may take for granted, like brushing our teeth, can take on a whole new meaning when it becomes a milestone of someone’s successful accomplishment. Drawing from my own personal experience of raising my daughter with autism and intellectual disabilities, I know caregiving can be complicated and is often exhausting.

Sometimes we just need help, another caring pair of hands to do the hard work that’s required to wash and to feed, to sing songs and to care for the beautiful souls that can’t take care of themselves. I know that there is no more worthwhile pursuit in life than to give of your time and energy in this way. Ejay knows this, too. Here is a man who understands, who gives without counting the cost. And I hope that by sharing this brief interview with Ejay Bustamante, you will also have the chance to get to know a little more about what spurs him on to be the light in the world of three boys.

Here is the story of Ejay and his incredible host home family.

Can you tell us a little bit about your background and how you transitioned into caregiving?

After 35 years as a Respiratory Therapist working in Pediatric & Neonatal Pulmonary ICU, the physician that I worked under and I both decided to retire. My best friend had opened a Day Program for special needs adults and needed someone to oversee his staff’s training department. I have always enjoyed teaching, so it was a great fit. And now 17 years later, I still do some of the staff training.

One day a young man was brought to the Day Program in search of a host home. Something just told me that he needed me and I could do it. I asked the Mosaic manager that accompanied him what I needed to do to be that home. Now here I am, over 10 years of being a Host Home Provider for three men.

In your experience, what are some benefits of being an independent caregiver with Mosaic?

I think that the best benefit for me is all the support that I receive. My manager is always there when I need her, even when I just need to talk. The Mosaic team are like family to me, especially since I don’t have family here in Arizona.

I also really like the self-service tools in the Openforce self-service portal. I’m able to see and print anything that has to do with my settlements. It’s helpful to be able to print and have proof of my settlements any time I need it. It’s also very convenient to have all my documentation in order in one spot.

Please share a little bit about your three boys and how you came into each other’s lives.

Anthony (Tony) was the young man I mentioned previously. He was brought to the Day Program where I worked and needed a home. Again, I just felt something that told me he needed me or I needed him.

When I learned of Kenneth (Kenny), his mother at the time was a case worker for the state of Arizona. One day she asked me if I ever thought of bringing another person into my home and if I would consider Kenny. Kenny also was attending the Day Program. Not too long after, I moved into a larger home and had more room. That’s when I contacted Kenny’s mother and in about a month, Kenny moved into my family.

I also had a room that I was using as an office. While I was in no hurry to add to our family, after some time I decided to start looking for a third person. Then one day I got a call from Mosaic. There was a young man, Victor, whose family was elderly and could not continue to care for him. Mosaic asked if I would consider meeting with him and his family, so I gladly met with them for a couple of hours.

At the end of the visit, Victor decided that he would like to live with me, and his mother asked that I consider it. I immediately shared that I didn’t have to think about it and that my decision was already made. Again, I just had that feeling in my heart and said yes. A month later, Victor moved in and became part of this family.

What does your typical day look like for you?

My morning starts early around 4:45 a.m. with a daily morning prayer, a shower, and I get myself ready for the day. That’s quickly followed by packing the boy’s lunches and getting things prepped for breakfast.

At 6:00 a.m., Tony is first to get up. I’ll brush his teeth, get him dressed, and then he goes out to watch some television in the family room. Next I wake Kenny and Victor, then start to make breakfast. I’ll brush Kenny’s teeth, get him dressed, and he’ll go back to his room to watch television. Finally, I help Victor brush his teeth and he’s able to dress himself. With everyone ready, the boys take their medications and have breakfast.

Around 8:00 a.m., we’ll leave together for the Day Program and while the boys are in the program, that’s when I’m off to work. I pick up the boys from the program about 4:00 p.m. and we all head home. As soon as we get home, I start making dinner while the boys relax from the day. We enjoy dinner together and I clean up afterwards.

From 6:30 to 8:30 p.m., our evenings are filled with different activities with the boys that can range from hobbies at home or nights out with the bowling league. It just depends on the night and what’s on the schedule. Later in the evening, Tony, Victor, and Kenny take their medications and shower before bed. By then it’s around 10:00 p.m. and I’ll pick up the house, work in some laundry, and end the day with a nightly prayer before bed. Outside of the activities, it’s structured for the most part, but that works well for all of us.

What are your biggest challenges as a caregiver?

I don’t consider anything as a big challenge. I look at things as just a speed bump in life. Any challenge can be conquered with time.

What are the biggest gains your boys have made in the past year?

Each of the boys have made great strides this past year. Tony started speech therapy to help him follow directions easier. He’s made a lot of progress and can now follow two- to three-step directions. Kenny is now able to look up some things on a computer. He loves YouTube. And Victor and I have joined a bowling league, which he enjoys and it’s also increasing his social skills.

ANCOR Recognizes Ejay Bustamante

I recently returned from the 2017 American Network of Community Options and Resources (ANCOR) conference in San Antonio, which brought together hundreds of attendees who represent private community providers for individuals with intellectual and developmental disabilities.

Since 2007, ANCOR has honored exceptional Direct Support Professionals (DSP) with the Direct Support Professional Recognition Award for exemplary work in furthering community inclusion and full participation for the many Americans living with intellectual, developmental, and other disabilities.

It was wonderful to see Ejay recognized from this year’s field of 245 nominees as ANCOR’s Direct Support Professional (DSP) of the Year for Arizona. His story just scratches the surface of the amazing work caregivers do each day to provide compassionate care that is more dependable and fulfilling. Congratulations, Ejay! You truly deserve to be celebrated for opening a life of possibilities for your host home family.