LONG BEACH 鈥 On a recent Thursday afternoon, Rhianna Alvarado struggled to don her protective gloves, which were聽too big for her petite hands.聽
With her mom coaching her every move, she edged close to her father and gently removed the plastic tube from his throat that allows him to breathe. She then聽cautiously inserted a new one.聽
鈥淲hat鈥檚 next?鈥 asked her mom, Rocio Alvarado, 43.聽
鈥淚 know, I know,鈥 replied Rhianna, her eyes constantly searching for her mom鈥檚 approval.聽
Rhianna is only 13. When she finished the delicate task of changing her father鈥檚 tracheostomy tube, usually performed聽only聽by adults, she went back into her room to doodle on her sketch pad and play with her cat.聽
Rhianna鈥檚 father, Brian Alvarado, is an Iraq War veteran and neck and throat cancer survivor.聽
Like most kids, Rhianna has been stuck at home during the聽covid-19聽pandemic and attends school online. But unlike most other eighth graders, Rhianna is a caregiver, tending to her dad between her virtual classes.聽
Rhianna is among more than 3 million children and teens who help an ill or disabled family member, according to聽, a national survey published by the National Alliance for Caregiving and AARP. The survey also found that Hispanic and African American children are twice as likely to be youth caregivers聽as聽non-Hispanic聽white children.聽
Carol Levine, a senior fellow at the United Hospital Fund, a nonprofit that focuses on improving health care in New York, said the聽covid聽pandemic, combined with the聽, has increased the number of youth caregivers聽because聽more children are homebound and must care for ill or addicted parents.聽
The pandemic has also made caregiving harder for them,聽since聽many can no longer escape to school during the day.聽
鈥淚n school they have their peers, they have activities,鈥 Levine said. 鈥淏ecause of the contagion, they aren鈥檛 allowed to do the things they might normally do, so of course there is additional stress.鈥澛
Levine was an author of a聽聽in 2005 that found there were about 400,000 youth caregivers between ages 8 and 11. The survey has not been updated, she said, but that number has likely grown.聽
Kaylin Jean-Louis was 10 when she started doing little things to care for her grandmother and great-grandmother, who have Alzheimer鈥檚 disease and live with Kaylin and her mother in聽Tallahassee, Florida.聽
Now 15, Kaylin has assumed a larger caregiving role. Every afternoon after her online classes end, the high school sophomore gives the women their medicine,聽and聽helps them use the聽bathroom, dress聽and take showers.聽
鈥淪ometimes they can act out and it can be challenging,鈥 she said. The hardest thing, she said, is that her grandmother can no longer remember Kaylin鈥檚 name.聽
Covid聽has added another level of stress to an already complex situation, Kaylin said, because she can鈥檛 decompress outside the聽house.聽
鈥淏eing around them so much, there has been a little tension,鈥 Kaylin acknowledged. She uses art to cope. 鈥淚 like to paint,鈥 she said. 鈥淚 find it very relaxing and calming.鈥澛
Kaylin鈥檚 mother, Priscilla Jean-Louis, got聽covid聽last month and had to rely on Kaylin to care for the elder women while she recovered.聽
鈥淪he isn鈥檛 forced to do it, but she helps me a great deal,鈥 Priscilla said. 鈥淚f there are moments when I鈥檓 a little frustrated, she may pick up on it and be like 鈥楳ommy, let me handle this.鈥欌澛
Rhianna鈥檚 dad, Brian, 40, never smoked and was healthy before joining the Marine Corps. He believes he got sick from inhaling smoke from burn pits during the Iraq War.聽
He was diagnosed with squamous cell carcinoma of the neck and throat in 2007. He also has PTSD, an inflammatory disease that causes muscle weakness聽and聽a rash,聽and hyperthyroidism from chemotherapy and radiation.聽
Rhianna鈥檚 mom is Brian鈥檚 primary caregiver, but Rhianna helps her change her dad鈥檚 trach tube and feed him through a feeding tube in his abdomen.聽
鈥淚鈥檓 still learning how to do it,鈥 Rhianna said. 鈥淚 get nervous,聽though.鈥澛
The two聽look聽after him on and off all day. 鈥淥ur care for聽him doesn鈥檛 end,鈥 Rocio said.聽
Rhianna is quiet and reserved. She has autism, struggles with communication and has trouble sleeping. She has been talking to a therapist once a week.聽
The trach has had the biggest impact on Rhianna,聽because Brian doesn鈥檛 join them for meals anymore. 鈥淚 feel sad that he聽can鈥檛 eat anything,鈥 she said.聽
Despite the growing number of youth caregivers,聽they have little support.聽
鈥淚f you look at all state and national caregiving programs and respite funding, they all begin at the age of 18,鈥 said聽, an associate professor of social work at the University of Wisconsin-Milwaukee.聽
Kavanaugh is聽researching Alzheimer鈥檚 and聽caregiving in Latino and African American communities in Milwaukee.聽
鈥淲e had a number of kids who were much more stressed out because they had no outlet,鈥 she said. 鈥淣ow they鈥檙e suddenly 24/7 care and聽there was absolutely no break.鈥澛
Adult聽and youth聽caregivers often聽聽from anxiety, depression and isolation, but there is little data on聽how caregiving affects young people over the long term,聽Kavanaugh said.聽
Connie聽Siskowski, founder of the聽, helped care for her grandfather as a child. 鈥淚 was not prepared,鈥 she said.聽鈥淚t was traumatic.鈥澛
Her Florida-based group connects聽young聽caregivers and their families with health care, education and community resources. The goal is to identify problems such as stress or isolation among the children, and address them so they won鈥檛 harm聽them as adults,聽Siskowski聽said.聽
But long-term care experts said caregiving can also enrich a young person鈥檚 life.聽
鈥淚t can help kids develop a sense of responsibility, empathy and confidence,鈥 Levine said. 鈥淭he problem comes when their schoolwork, their friendships, their lives as a child are so affected by caregiving that they can鈥檛 develop in those other important ways.鈥澛
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