From Uncertainty to Goodbye: ALS Through a Caregiver’s Eyes

From left to right: Estefania Soto, Diego Soto, Miguel Soto and Cesar Soto. Feb. 2016

Lou Gehrig’s disease or ALS is a disease in which a person’s brain loses its connection with the muscles. Over time, the person loses the ability to walk, talk, eat and breathe.

For Diego Soto, a 23-year-old Modesto resident, he revealed what it was like to take care of his father, 53-year-old Miguel Soto, who was diagnosed with ALS in November of 2025. Diego was asked what his perspective was like taking care of his dad but also taking care of his brother, 26-year-old Cesar Soto, who has autism and epilepsy.

“When he was in his early stages, I do remember how easy it was to take care of him. From helping him get up, taking him on walks, using the restroom, being able to give him food and drinks. It was difficult but easy at the same time” as Soto recalls his perspective. “He still had the ability to use one arm more than the other in those early stages. As the use of his arms got weaker, that was the moment that I became his caretaker. His main caretaker.”

When Soto found out about the official diagnosis, he had heard about the disease before. “I have heard of ALS before. I am a huge Spongebob fan. I had heard a few years back that the creator of Spongebob was diagnosed with ALS. I had done some research on this disease when I found out. He passed away months after announcing the diagnosis.”

“I did not know that it would be that for my dad, nearly everyone in my family thought he had a stroke while he was working a few years back. I knew that this disease could progress rapidly or slowly. I knew that there is no cure. I knew that it was going to be challenging but life changing at the same time.”

On top of having to take care of his dad, Diego also had to take care of his brother, Cesar. “It is the most difficult task of not only taking care of my dad but my brother as well. For my dad being sick and my brother wanting to go out and spend time with him and seeing him unable to do that with him was hard to see.”

Guillermo Cruz, Diego’s brother-in-law, tells how he feels about Diego being a caretaker for his father-in-law. “He has truly grown a lot. Having to go through that challenge. It shows his character and strength in him as a person.”

After receiving the diagnosis, Soto recalls how he was still taking care of his dad with countless restless nights and days due to the inability to be able to sleep on his back and relying on sleeping on his side. Not being able to eat as much anymore and relying on soft foods or liquids. Along with having health scares.

“I remember calling the ambulance the first time for him as he was choking on his own breath while my mom was giving him a bath. I was afraid at that moment, because my sister was not home at the time. I wanted to call her but I knew that she was at work and I did not want to cause panic to her. I’m glad that what had happened to my dad at that moment was nothing serious but it had me prepared for when that moment arrived.”

Memorial created in memory of Miguel Soto

Miguel Soto passed away on Mar. 20, 2026 at 53-years-old from complications from ALS. Diego recalls seeing his sister, Estefania, in tears on the couch after hearing about the news. “I’m not a hugger or the type of person to offer the best comfort but we gave each other the biggest hug and comfort to one another. I wanted to be with my mom at that moment because we both thought that she was by herself at the hospital.”

Soto proceeded to walk to the hospital as it is nearby where he lives and met with his mom. He was grateful that his mom wasn’t alone in the room as he saw his aunt and uncle in the room as well. He remembers how hours before his dad’s passing he had visited him to spend time with him.

“Being in the room, I broke down. Remembering the times that I took care of him through the good days and bad days. His stubbornness on wanting help in the early stages, him being difficult with everyone that wanted to help him in the months before the diagnosis. I hated but cared for him in his last few months of life.”

In the days after his dad’s passing and leading up to his funeral, Soto recounts how he regrets a few things with his dad. “There were moments in time where my dad would talk about his life in Mexico and I would ignore it sometimes. Now, I regret it so much. I wish he was here to talk about it. I would let him talk about it and I can sit there and listen to his stories”

Soto has also been holding onto a secret that not only he but the rest of his family do not want to tell his brother yet but knows that eventually, they have to tell him. He was told not to tell his brother that their dad passed away. “We do not know how he will react to the news. Knowing that this is a big change in life for him, we have been letting the days pass so that he can adjust to the new change. There are moments that he does ask if he is coming home and I hate to have to lie to him and say yes.”

His mom, Evelia Soto, has stated how she has felt for her son doing all the hard work for nearly a year and a half. “I’m proud to have him as a son but I also feel so sorry that he had to do this when I had to work long hours. I know that he has missed out on family events and outings just to help his dad. I know that he has forgiven me always but I will always be sorry for having him in this position.

Soto was asked what his perspective is like now with everything since his dad’s passing.

“I learned that life can throw you a curveball very unexpectedly. Live life that you can. Take risks, take a chance. These are dark times that we are living in right now but let’s not try to let that affect you too much.”

The last family photo taken Jul. 2025 From left to right top row: Diego Soto, Evelia Soto, Miguel Soto and Cesar Soto. Bottom row: Estefania Soto