Kristina Ortiz and Tim Himes aren鈥檛 brother and sister by blood, but they might as well be. They鈥檝e never known life apart. Ortiz was six months old when her foster mother brought Himes home from the hospital.
鈥淚鈥檓 always there for you,鈥� Himes said on a video call with Ortiz.
鈥淢ama Monica,鈥� as her many foster children called her, was more than a mom. For the first 30 years of his life, she was Himes鈥� full-time caregiver. Himes was born with cerebral palsy, and he鈥檚 had other health issues over the years. He鈥檚 had multiple surgeries on his legs, and at one point needed a pacemaker. Now he uses a power wheelchair to get around, which Ortiz says makes him more independent.
鈥淚 see him and he can do just as much as me,鈥� Ortiz said. 鈥淗e's kind of an inspiration to me.鈥�
But Himes still needs 24/7 care. So when Monica died in early 2019, Ortiz worried about what would happen to her little brother.
鈥淭immy just couldn鈥檛 go to a nursing home. Honestly, it probably would have, in my opinion, hurt him more than helped him,鈥� she said. 鈥淪o, of course, I stepped up and I was like, you know, let's try to figure something out.鈥�
Ortiz became one of the estimated850,000family caregivers in Indiana., more than one in five Americans are caregivers 鈥� people who support a family member through an illness, disability or aging. Ortiz is responsible for all of Himes鈥� care, from bathing and dressing him to managing his medications and doctors appointments.
鈥淎bsolutely I was nervous,鈥� Ortiz said. 鈥淢aking sure I just did everything right. What do I ask? What do I say? What do I request?鈥�
The family got into a routine that included Himes, Ortiz and her 1-year-old son, Zaevion. Then in March, everything changed.
鈥淲hen this COVID-19 thing happened, everything slowed down drastically,鈥� Ortiz said.
Adjusting to life in a pandemic
Caregivers juggle work and family, and coordinate medical care for a loved one 鈥� a lot of responsibility under normal conditions. Now, with the COVID-19 pandemic, millions of caregivers across the country are adjusting to new ways of life.
鈥淔rom the caregiver standpoint, you notice the supports you did rely on are not available,鈥� said Kelly Fischer, a lecturer in the department of psychological science at Ball State University and a licensed mental health counselor. 鈥淚 think sometimes the average person doesn't realize that this can also mean very rapidly having to learn medical interventions and things like that.鈥�
Fischer knows this firsthand. She鈥檚 also a caregiver for her 19-year-old son Noah, who is blind, has autism and is developmentally delayed, among other physical disabilities. When his school moved to online instruction, Fischer was responsible for his care during the day while she worked from home.
"I鈥檓 fortunate that I was already working from home, so that wasn't an adjustment for me. But how do you fit in when he needs to eat, because that's not something he can do independently. And even needing to go use the restroom,鈥� she said. 鈥淲hat we find is a lot of families, our income, their income is directly dependent on their ability to access supports.鈥�
Losing skills without support
Many in-person therapy programs for people with disabilities also stopped. Emily Ransom鈥檚 5-year-old son, Kash, has a severe form of autism, epilepsy, among other health issues. He鈥檚 spent years in applied behavioral analysis, a form of therapy that helps people with autism build skills and manage challenging behaviors. He was also in speech and occupational therapy.
鈥淗e would have skills that he's gained during these therapies like matching colors, like sorting different shapes,鈥� Ransom said. 鈥淗e would make sounds for his speech.鈥�
But those programs closed in March, and over the next four months, Ransom started to see Kash lose those skills.
"All that work that he put in and we put in and it was just going away because of the whole pandemic and there was nothing that we could do,鈥� she said.
Losing skills has been a concern for many families supporting people with autism through the pandemic, according to Donna Murray, vice president of clinical programs at Autism Speaks, an autism advocacy organization. People with autism are comforted by routine, and when their routines, like going to school or therapy, are disrupted, they can get anxious. Replacing those services with telehealth options has helped some families, but Murray said transitioning from in-person service has been difficult for others.
鈥淲e've really encouraged families to think about things and skills that they can learn in the home so that perhaps they're gaining new skills in hygiene, self-care, daily living skills that maybe they wouldn't have had in the school,鈥� Murray said. 鈥淚 also think the important thing is realizing that going back to the routine -- like going back into work, going back into school -- will still be a transition."
On top of everything else, Ransom is pregnant. Her pregnancy is high-risk, so she鈥檚 only left home for doctor鈥檚 appointments, which she can鈥檛 bring her husband or Kash to, since most health care facilities . Without therapy, Ransom says Kash has been frustrated and had more challenging behaviors.
鈥淗e would hit, he would kick, he would self-destruct. It got to the point to where it was getting close to himself injuring himself, and we have not seen that since he was little,鈥� Ransom said. 鈥淎nd then, of course, with me being pregnant, when he gets frustrated he would turn on me and then I would have to be careful to make sure he wouldn't attack me because of the baby.鈥�
Describing Kash鈥檚 challenging behaviors is difficult in the social media groups Ransom has turned to for support during the pandemic. She said it can feel like the other parents are judging her.
Getting help
Fischer says caregivers also judge themselves. They reported, even before the pandemic. Fischer says signs of burnout include feeling exhausted all the time, losing interest in activities and feeling like every day is going to be a bad day.
"Or they feel like the tasks that they're doing are either overwhelming or underappreciated or just not making a difference,鈥� she said.
Fischer says caregivers also have to accept help. After Ortiz took over her brother鈥檚 care, she got help from, a program that supports family caregivers. Ortiz says the program helped get Himes鈥� power wheelchair, and it also referred her to a company to make their home in South Bend more accessible.
鈥淭hey do home visits and everything. Of course, that stopped when COVID-19 happened," Ortiz said. 鈥淏ut we have this really cool app and we're able to send videos and pictures and kind of stay connected in that way too.鈥�
Regina Smelser, the clinical team lead for Caregiver Homes, said during the pandemic clients have had difficulty finding fresh food and accessing their doctors. Caregivers like Ortiz use an app to ask for support in filling prescriptions or getting paperwork to their health care providers.
"I can't imagine how it's been for people who have no one and has been having to figure out what life is like now, when they can't go anywhere and they can't do anything and they didn't have anyone there to help them,鈥� Smelser said. 鈥淚 feel very fortunate to be in the position where we are to support those family caregivers, and the extra legwork that they've had to do over the past several months to make things continue as usual.鈥�
Fischer says self-care 鈥� taking time for yourself and activities you enjoy 鈥� is important, too. For Ransom, that's schoolwork. She's also a full-time grad student. And some things for her family are getting back to normal. Kash has started in-person therapy again, working to rebuild old skills and adding new ones.
鈥淗e has sensory issues and he can't handle things on his head, his ears, his face. But they are working on kids wearing a mask,鈥� she said. 鈥淲e've been working so hard and he was able to keep the mask on for a full doctor's appointment last week. So that was a huge milestone, him keeping that mask on his face and not getting upset.鈥�
Ortiz says being stuck inside has brought her family closer. They miss their regular activities, like going bowling, but she has learned how to bake cookies. And, she sends Caregiver Homes photos of the family鈥檚 favorite activity while stuck at home 鈥� karaoke.
鈥淲e probably know almost every Disney song, don't we?鈥� Ortiz asked.
鈥淵up,鈥� Himes replied.
This story was produced by , a news collaborative covering public health. It is part of the funded by the Corporation for Public Broadcasting. It focuses on people with disabilities and the issues they face.
Contact reporter Lauren Bavis at 濒产补惫颈蝉蔼飞蹿测颈.辞谤驳听or follow her on Twitter
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