“I choose that hard, unconditional, raw love,” says Carlos, the primary caregiver for his father who is living with Alzheimer’s Disease. “As much as I hate Alzheimer’s, I love my dad. I keep on saying it’s a love story. And love is hard sometimes.”

“I grew up with this wonderful family,” Carlos reflects. “I am a native of California. I was born in a town called Yuba City, California, which is about an hour away from where I live now in Sacramento. I was raised all my life here. I come from a predominantly Latino family. We are Americans of Mexican descent. I identify as Chicano, Mexican-American. As far as I can remember, we were always a multigenerational family … We’ve just had a kind of wonderful life; not too many hardships, not too many traumas, just family–learning how to cook, going on family vacations, and a lot of laughs. A lot of what [my parents] instilled through raising us is reflected in the way I approach caregiving today.”

Carlos’ father, Charlie, also grew up in California. He was raised in Olivehurst, “a very modest little town near Marysville.” Charlie did not know his father well. “Immediately after my dad was born, [his father] went off to World War II to serve his country and then after that, he divorced my grandmother … [Charlie] raised the rest of his family while his mother went to work.”

Growing up, Charlie’s passion was art. “My dad’s always been an artist. He talks about a memory he recalls from his kindergarten, creating a caboose that apparently was the best caboose that the teacher had seen.” Although they’ve never laid eyes on the famed caboose, the family still has ample proof of Charlie’s many artistic endeavors, including furniture, drawings, pottery, and more that he has created over the course of his life.

Charlie went from the ROTC program at his high school to the navy, where he trained to become a draftsman. He graduated from California State University in Sacramento with an art major.

“My dad’s a very, very talented person. My first memories of him, he was always busy. There was always some project he was doing. Later, I found out that he did not pursue a dream of becoming an architect. [Instead, he] raised a family, did what was smart at the time, and built a life,” taking a job in university media services at his alma mater.

“He was committed to his marriage. He was committed to being a family member, raising two boys, and being the king to his queen. He’s the hero of the family.”

And Charlie applied his creativity, love, and knowledge of architecture when he built the addition to their family home, the home in which he and Carlos currently reside. “And he did the electrical, the plumbing, the carpentry, everything. It’s a hard shadow to live underneath. He set a tall standard to follow. [He has a] determination to live every day to the fullest. He’s creative, disciplined … He thinks it and he does it.”

Charlie is a prolific artist, whose pieces have graced the news and appeared in State Fairs and art competitions. “I’m very proud of him,” Carlos shares.

But in 2013, Charlie stopped creating. “He stopped taking care of himself. There’s a gap–a few years where he just stopped. We would call him and he would say, ‘Oh I’m just sitting in the backyard watching the wind go by.’ He was retired. He didn’t have to have a routine. He wasn’t creating.”

In 2015, Charlie was diagnosed with Mild Cognitive Impairment (MCI). “We didn’t really get information after that diagnosis to kind of explore what we needed to do. How did we need to take care of somebody with Mild Cognitive Impairment? Can they do all of the same things? Now, I reflect that we could have done so much more.”

In 2016, Carlos, who was working in the entertainment industry in Southern California, moved back to Northern California to start helping Charlie. He began the long process of “trying to understand this misunderstood disease.”

In early 2017, Carlos advocated for Charlie’s primary care physician to refer him to a neurologist.  And he began the laborious process of trying to arrange his dad’s affairs. “I really didn’t know how. I was exploring different things like talking to his attorney. I made an appointment, brought all these documents, and said, ‘What is this? Please educate me.’ And she directed me to my dad’s insurance agent. And I brought all the insurance documents and said, ‘What is this?’ … We started getting long term care insurance going because [the insurance agent] heard things that raised a flag and it made me realize that we needed to change things.”

Later in 2017, after the official diagnosis of Alzheimer’s Disease, “probably about 90 days after adjustments of his medication,” Charlie started drawing again.

“I started recognizing that he was searching for paper more often, searching for pens. He was going through all the resources that we had in the house, so we had to restock. We made sure he had enough paper readily available for him. We made sure he had paint. And it started evolving. In 2019, we had a solo art show for him, and it was kind of a breakout where we introduced that dad did have Alzheimer’s, and that people with Alzheimer’s can be creative, they can flourish, they can thrive utilizing adaptive therapies and skills … And dad was flowing with it. He was embracing it. We as a family were growing together with Alzheimer’s. We were supporting him … He was safe, he was comfortable, and he was loved. I think that really encouraged him to keep going.”

“You have to take these little sparks and embrace them … I created a small, simple kind of space for him. Or he’s creating it himself, I’m just adapting to it. I believe he’s teaching me how to care for him.” 

“To this day, he will draw and draw and draw from the morning time until bedtime. Sometimes, he’ll take his artwork with him to bed. And I will have to clean up after him. There will be felt tip marker marks on his bedding. It’s like him taking snacks to bed. It’s part of his life. It is this passion to draw. He’s comfortable with it. And it keeps his mind active, keeps him flowing. He’ll say [of his drawings], ‘This is my brain today.’”

But Carlos is quick to point out that he and his father were only able to reach this point with the help of the support system they’ve built. “I went through some depression on my journey. I needed to know more about what was going on … I ended up going to a support group, walked in, and immediately felt different because no one looked like me. They were much older and they were mostly females … I attached a stigma to being a caregiver. [At first], I called myself a supervisor of my dad’s health. I didn’t know what a male caregiver was.”

“But,” Carlos realizes, “I’ve known it all my life.” Carlos’ parents were caregivers for his grandmother and others when he was young. “Throughout my mom and dad’s life, they were caregivers for certain family members they had in the house when they had surgery or something or because they couldn’t walk up the stairs and they needed a one story place to live for a month or two. And then during my mom’s battle with cancer, my dad took up the role as the male caregiver and cared for her until she passed away in 2008.”

“And it was through the caregiver support system that I recognized that I was a caregiver. I am a partner in this journey. I [am] providing care. I started reading books, taking workshops, understanding that I had to take a different approach to becoming like the best friend to my dad … I got a caregiver coach. I started really listening to other caregivers, listening to that wisdom, the resilience, the determination to get through it, understanding that they were the wise people who were already ahead of me and I could learn from them. I could get that courage and confidence and I could also shed my embarrassment, my shame. I could be angry in those caregiver support groups. I could really release what was going on inside me and be heard and be seen … I need to be around people that are like-minded. They want to support their loved ones, but they also want to support themselves.”

“I learned the hard way [that I needed to find a good support system],” Carlos recalls, “Being punched in the head, being kicked, glass thrown at me, having a utensil thrown at me–those things are hard to recover from. But I can keep him smiling with a sexual innuendo and adapt to him in a way that he understands, that is specific and removes the dementia out of the way for just a moment so he can connect. I feel like I have to pull those guitar strings just right.”

Carlos knows that he can best support his dad when he focuses on love, on family, and on gratitude. He focuses on the love his parents taught him. He thinks of his mom cooking tamales in the kitchen his dad designed for her. He thinks about his own daughter. He thinks about his brother. Carlos honors the feelings he experiences, shares them, and hopes to bring attention to the importance of caregivers’ mental health.

In fact, in October 2022, Carlos began a 51 Day Gratitude Challenge, which he shared on social media. This challenge began soon after Carlos lost his brother, who died before his 51st birthday.

“In my process of grieving my brother, I was searching for a coping skill … And one thing that really popped out was gratitude; practicing gratitude as a daily routine. And I wanted to honor my brother in a way that made sense to me, not knowing what was going to happen … There were things I wanted to appreciate about my brother: his efforts to move across the country, to leave his career in Nascar, to come home and help me out caring for dad. I considered him a caregiver as well. And when you become a caregiver, you bring with you health conditions, life challenges; you bring your mental health with you.”

The challenges, Carlos notes, were just one small part of their relationship. “We still had 48+ years that were built on love and connection. I felt my 51 day gratitude challenge was to highlight that life leading up to his 51st birthday in a way to celebrate life, to savor the sensations that I felt recalling him … It was an inward retrospective of being a brother. It was one way of overcoming the rawness that I was feeling. I was bruised. It was very traumatic for me. I had to find an outlet to release this, as I am right now. I have to talk about it because of the weight of it bearing down on my shoulders as I navigate a person living with dementia who doesn’t really recall what’s going on.”

After his brother’s death, Carlos shares, “I hid it away from my dad, and I reached out to the people who I knew would be my lifeline. I reached out to the facilitators of my caregiver support groups, I reached out to my doctor, I reached out to my therapist, I reached out to other members of the caregiver support community. I wanted to have eyes on me because I was compromised as a caregiver. And how do I maintain a sense of self during these times? I did not have an answer. I did not know how to take those steps forward. I just had to do it. I needed that support. I needed those partners in this care circle to give me some guidance.”

“How,” Carlos wondered, “was I going to notify my dad that my brother’s no longer here in the physical world? … It is still difficult to process this now. We are coming up on the death anniversary in August. I’m not prepared for it. Talking about my brother gives me some ability to release the grief … It helps me find some stable ground to hold onto while I try to fight gravity to stand back up.”

When Carlos reflects on the gratitude challenge, he remarks that it sparked much more than he anticipated. “I still get people asking me about it. And people are still taking on that gratitude challenge. They’re showing it on social media or they’re doing it personally. They’re realizing that it’s a practice. You have to practice at it; self care, understanding oneself. I’m still learning about it and how it can impact me. Sometimes I don’t practice it myself and it shows. That’s me. I have to go through it. I cannot live without it. And I always have to remind myself that there is gratitude out there.”

When Carlos asks Charlie, “What are you grateful for?” Charlie tells him, “I’m grateful for my two boys and that they’re taking good care of me.”

You can follow Carlos and Charlie’s story and view Charlie’s art on Instagram @charlierobot.