Nearly one million people in the U.S. are living with multiple sclerosis (MS), an autoimmune disease that attacks the central nervous system. It’s estimated that about a quarter of all people with MS need a caregiver to help with their daily activities and personal care, according to the U.S. Department of Veterans Affairs.
One of those people is Alison Lopez, 46, who lives outside Albuquerque, New Mexico. Since her MS diagnosis in 2018, her primary caregiver has been her 14-year-old son, Tylor Lopez.
Before her diagnosis, Lopez was a busy single mom, working as a flight paramedic.
“I was very active, on the go and health-oriented,” she told Fox News Digital in a phone interview.
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A few years ago, though, she began noticing some limb weakness, extreme fatigue, cognitive impairment and even heat intolerance. “None of it made any sense,” she said.
After some frustration with local treatment options, Lopez traveled to the Cleveland Clinic’s Lou Ruvo Center for Brain Health in Las Vegas, Nevada, where Dr. Carrie Hersh, director of the Multiple Sclerosis Health and Wellness Program, finally gave Lopez her diagnosis.
“It felt earth-shattering,” Lopez said. “At first, I was under the misconception that it was untreatable and a horrible life sentence. Eventually, I came to look at it as a new beginning — a transition to a new and different life.”
At the time of Lopez’s diagnosis, she already had significant lesions in her brain and spinal cord, said Dr. Hersh.
As Lopez’s symptoms progressed and she began relying on a wheelchair for mobility, Lopez’s son began helping out. Since then, he’s been an integral part of her day-to-day care.
“We’ve always been a great team, but this has made us even stronger,” Lopez said.
‘There’s no better reward’
Lopez’s son said he is honored to assume the role of his mother’s caregiver.
“Every night, when I lay my head on the pillow, I think there’s no better reward than knowing that I took care of my loved one today and I made a change,” he told Fox News Digital in a phone interview.
“We’ve always been a great team, but this has made us even stronger.”
Being the primary caregiver, however, is not without challenges. Lopez’s son, who is homeschooled, said he sometimes worries when he has to leave the house.
“If I go to a friend’s house, I worry about whether my mom will be OK getting out of bed or going to the bathroom,” he said.
Lopez said she encourages her son to have fun and pursue activities he enjoys, but admitted she sometimes worries, too.
“When he’s not around, I try to be fiercely independent — but deep down, I think there’s always a little anxiety for both of us,” she said.
Lopez’s son said he’s learned a lot in his role, especially as he accompanies his mother to all of her doctors’ appointments. While there, he is actively involved and asks questions about her care.
“When I go to a friend’s house, I worry about my mom.”
“Sometimes when I struggle with ‘MS brain fog,’ he remembers things I forget and makes sure I have all the information I need,” Lopez said.
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To relax and try to de-stress, the teenager said he enjoys playing video games, watching TV and spending time with his friends — and with his mom — outside the house.
His goal is to one day become a forensic pathologist.
He said he hopes to attend college in a hybrid mode — meaning, half the time at home, half on campus — to allow him to continue caring for his mother, he told Fox News Digital.
“There will be bad days and that’s OK.”
As he gets older, the teen looks forward to getting his driver’s license, so he can transport his mother to and from her medical appointments.
To other young caregivers, Lopez’s son has some advice.
“Do your own research and don’t be afraid to ask questions,” he said. “Take care of your own mental health first. There will be bad days and that’s OK.”
Caregiving roles often fall on family
There were approximately 1.3 to 1.4 million caregivers 18 years of age and younger in the U.S. as of 2004, according to a national survey reported by the National Alliance for Caregiving (NAC).
(The actual number is likely higher, as the survey only included English-speaking families whose parents consented for the children to participate.)
“In a perfect world, it would be ideal to hire someone without family ties to provide caregiving services, as it helps with boundaries and helps kids be kids — but children may have to fill this role due to lack of opportunity to hire outside help, financial struggles or lack of access,” Dr. Kristen Casey, a licensed clinical psychologist and mental health expert in Kansas City, Missouri, told Fox News Digital via email.
Some children, like Tylor Lopez, may enjoy providing caregiving services for their parents — and there can indeed be some benefits.
“Caregiving can come with a large emotional, physical and social burden.”
“Young caregivers may learn more than their peers about providing help to others, which may instill a deep sense of connectedness and belonging to other human beings,” Dr. Casey said.
“That may help them with developing deep relationships or friendships.”
However, Vijayeta Sinh, PhD, a licensed clinical psychologist at The Mt. Sinai Hospital in New York City, conveys a note of caution about the risks for young caregivers.
“Generally speaking, we want to give children the opportunity to grow and develop without feeling psychologically or physically burdened,” she said in a phone interview with Fox News Digital.
Even for an adult caretaker, she said, it can be a challenge to meet the patient’s needs as well as their own. For a child, it can be doubly difficult.
“They’re still figuring out their place in the world and don’t have all the internal resources to cope with an issue of this magnanimity,” said Dr. Sinh. “I would advise trying to get the help and support of other adults rather than relying on young children or teenagers.”
Lopez’s neurologist, Dr. Hersh, pointed out that it’s not entirely uncommon for a child to become a caregiver for a parent with MS.
“However, it’s important to note that the full caregiving responsibility should not fall solely on the child if it can be helped, especially with the large emotional, physical and social burden it can cause,” she said.
When weighing whether a child is equipped to be a caregiver, the doctor said many factors come into play, including the child’s age, maturity level and physical ability to handle caregiving tasks.
Depending on the child’s age, there may be various red flags to indicate that he or she is experiencing stress, anxiety or burnout.
It can be traumatic for young people to witness a parent become unable to take care of themselves, said Dr. Sinh.
It’s important to watch for red flags of stress or burnout.
“If they don’t have the resources to deal with what they are going through or articulate their experience, it can create a disruption in their emotional and psychological development,” she said.
“They may not get the chance to have a full and complete childhood because they had to grow up too soon.”
Some common signs of childhood trauma, she said, include having trouble regulating their moods, withdrawing socially, participating in self-harm or feeling hopeless about their circumstances, their future and/or the health of their parent.
Additionally, a troubled child may show signs of behavior issues, academic decline or trouble concentrating, Dr. Casey added.
“They may tend to act out or ‘show’ their emotions rather than expressing them, which is important for school administrators and adults to be aware of,” she explained.
Helping young caregivers cope
In the case of a struggling young caregiver, the first step should be to ask for outside part-time help, said Dr. Casey.
“There may be another family member who can fill in a few days per week so the young caregiver can spend time with friends, hobbies or other activities that instill a sense of autonomy and fulfillment,” she told Fox News Digital.
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If this isn’t possible, she suggests a few other strategies to preserve the child’s mental health.
First, communication is key.
“It’s helpful to have open discussions about caregiving, including expectations, stress management tools and opportunities for autonomy,” said Dr. Casey.
Setting expectations is important, she said, as some young caregivers may go above and beyond because they care about their adult.
“Sticking to the baseline of care may help reduce stress,” Dr. Casey noted. “Young caregivers may feel that they lost out on their childhood years if caregiving takes priority over developmental milestones. It’s important that the child has the tools necessary to be helpful, but also has an outlet to live the rest” of his or her life.
If it’s accessible and affordable, therapy may be a helpful tool for young caregivers, all of the doctors agreed.
“Young caregivers may have feelings or emotions built up, but may be apprehensive about discussing them with their adult because they don’t want to ‘rock the boat’ — or they may feel guilty for having the emotions in the first place,” Dr. Casey explained.
“Therapy is usually an effective outlet for young people to express themselves without worrying about what their parents or guardians might think.”
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At the Cleveland Clinic, Dr. Hersh said Lopez’s care team has made her son’s safety and wellness a priority.
“It was important for us to have conversations with Alison to make sure Tylor is receiving everything he needs, including care for his own growth and development,” the doctor said.
“As part of our routine patient assessments, we always include the caregiver and consider the impact on them.”
Multidisciplinary care has been key
Lopez credits the Cleveland Clinic for helping her live the highest quality of life possible. She and her son regularly travel to Las Vegas, Nevada, to visit her care team.
“They have embraced us like family,” she told Fox News Digital. “They take the time to care for both mine and Tylor’s physical and emotional health. With their care and concern, I came to realize that while this disease might not be curable, it is treatable and manageable.”
In addition to the medications Lopez is taking, Dr. Hersh said they’ve also implemented a multidisciplinary care management program.
Specifically, this program includes things like physical therapy, occupational therapy, cognitive therapy, a psychological program to help with mood disorders, and assistance with coping strategies and stress management.
“Behind the scenes, Tylor is my hidden hero.”
The clinic has also helped with logistical solutions, such as implementing home safety modifications and getting Lopez access to the equipment she needs.
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“It’s a holistic approach to care that is personalized and patient-centered,” Dr. Hersh said. “We address the needs of the whole person as well as their support system.”
Overall, Lopez said she has embraced her multiple sclerosis as a chance to inspire, encourage and educate others.
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“I’ve come to see it as a celebration of life — it’s not a bad thing, but just a stepping stone in our journey,” she said.
“And behind the scenes, Tylor is my hidden hero.”