Dorothy Harris, coaches her sister Bernice, or Bunt, Goode, on how to breathe through a nebulizer at their home in Southfield. The nebulizer machine turns liquid medicine into a mist that can be easily inhaled. Goode was diagnosed with dementia in 2015 and Harris is her full-time caregiver.  Credit: Hannah Mackay

Dorothy Harris rushed through her darkened home, gathering her sister’s medications and extra clothes.

The power had gone out that February afternoon as one of Michigan’s largest ice storms in half a century barreled down on Harris’ hometown of Southfield, coating wires and driveways in up to a half-inch of ice.

Without electricity, Harris’ sister, Bernice Goode, 75, who lives with Harris and has dementia, couldn’t use the in-home oxygen unit that helped her breathe. Harris needed to get Goode to a place with power — and fast.

Their brother lives in Warren, about a 25-minute drive away, and he had a generator. They headed there, and stayed for a few days as the local utility company began restoring power to nearly 500,000 customers in southeastern Michigan in the wake of the storm.

“You’re gonna rely on your family, so I went to him because I had nowhere else to go,” said Harris, 65. “We hadn’t been through that before, and I had no resources.”

As the U.S. population ages, more and more older Americans will rely on in-home caregiving from family or paid aides. Adults and children with disabilities also need the critical help caregivers provide.

At the same time, severe weather events like Michigan’s multiday power outages this summer  or the deadly Christmas weekend blizzard in Buffalo last year, are increasingly common, fueled to some extent by climate change. The multiday Buffalo storm that began Dec. 23 killed close to 50 people, a number of them senior citizens who died because of delayed emergency medical responses or because they froze to death in homes that lost power.

Subsequent studies of why so many people died pointed to gaps in communications to the public on the severity of the storm, inadequate emergency planning and the use of outdated software to help agencies assist those in need.

In such perilous circumstances, caregivers face mounting stress over keeping their loved ones safe when the lights go out, or when driving may be dangerous or even impossible. They wonder if evacuation options are safe and accessible for those receiving care, and spend hours devising contingency plans in case they end up in the path of a monster storm.

“When you have special needs kids … you have to be ready for a war,” said Crystal Attisha, 39, a mom and caregiver to 7-year-old twin daughters with disabilities in West Bloomfield, Mich. “Our everyday life is not the normal of most families.”

How caregiving families prep for emergencies

Attisha’s daughters, Katalina and Klaudia, were born with cerebral palsy and Angelman syndrome, a genetic disorder that causes delayed development and intellectual disabilities.

“They do not do well with change, so it is awful when something in their schedule is disrupted; they have huge anxiety attacks, the sleep — you just know that you’re not going to sleep that night at all,” Attisha said.

Klaudia Attisha, 7, plays on an Augmentative and Alternative Communication device with her parents Crystal and Kevin Attisha. Klaudia was born with Angelman syndrome, a genetic disorder that causes delayed development and intellectual disabilities and relies on the device to communicate. (Robert Bell/Democrat and Chronicle)

Katalina and Klaudia rely on temperature-controlled medications to regulate their anxiety and aggression levels and to sleep. They are also non-verbal and rely on rechargeable AAC speech-generating devices to communicate.

“If we don’t have power… they can’t communicate, which leads to huge behavioral problems and anxiety, extra stress,” Attisha said.

When her house lost power in February, Attisha had to improvise. She immediately packed her daughters’ medication in a cooler and the family of five stayed in a hotel until electricity was restored.

Now Attisha is prepared with emergency “bug-out bags” always ready. She recently invested in dry ice packs to store the medication and a battery-powered generator to charge a mini-fridge and the twins’ speech devices.

Jen Rivera of Rochester, New York, cares for her 80-year-old father with dementia. She manages all of his medications, including insulin, which require a refrigerator to keep them at safe temperatures. Her father also uses medical equipment that requires power. 

“It will be challenging to provide adequate care” if their power were to be cut by a strong storm, Rivera said.

Jen Rivera, 37, of Rochester, N.Y., has been caring for her dad, Julio Rivera, 80, for six years. She manages all his medications, some of which must be refrigerated, and worries what would happen if they lost power in an emergency weather situation. (Robert Bell/Democrat and Chronicle)

She also questioned whether she could access groceries and shelter for her father in a severe weather event, if needed – “How do we cook? Where do we have to evacuate? How can we leave and where can we go to remain safe?”

A study published last year in the Journal of Applied Gerontology on the mental health of home-based care providers during disasters found that these providers felt feelings of “helplessness” and immense stress as they “tried to juggle their patients’ needs with the hurricanes’ impacts on their own personal lives.”

The providers, who were interviewed after several recent hurricanes in the southeastern United States, stressed the importance of having a hurricane preparedness plan for their own family that would ensure their safety, while allowing the provider to also prioritize the client in an emergency.

Fear of living without care in an emergency

The prospect of going without care for even a few hours is daunting to those receiving care from family or paid caregivers. For Jensen Caraballo, 33, of Rochester, that would mean he couldn’t leave his bed, eat or drink.

Caraballo, who uses a wheelchair full time, says the prospect of a major weather event is anxiety-inducing.

“I don’t know how I would respond in an event like this,” he said. “I won’t be able to eat or drink from my bed without assistance, which can lead to me being malnourished or sick. My home care workers keep me alive.”

He receives assistance from paid caregivers through New York’s Consumer Directed Personal Assistance Program. One of them, Wilfredo Rodriguez-Lopez, has been a close friend for 25 years. They met as kids and bonded over playing Nintendo.

There have been winter days when Rodriguez-Lopez couldn’t get to Caraballo’s apartment by vehicle at his scheduled time — so he walked 20 minutes through the snow instead. On other days, if the next shift’s caregiver can’t make it into work, Rodriguez-Lopez will stay past his allotted paid shift.

“It’s either that or Jensen doesn’t eat today,” he said. If a snowstorm knocked power out in the middle of the night, Caraballo’s bed, which is inflatable and powered by electricity, could deflate and suffocate him, Rodriguez-Lopez said.

Having a disability also means questioning whether your area’s emergency plans have you in mind, said Jeiri Flores, 32, of Rochester. She also uses a wheelchair for mobility, and relies on family caregivers to help her during the week. Her wheelchair needs to charge — which means if power goes out, she can’t get around on her own.

If a dangerous amount of snow or ice piles up outside her home, she can’t shovel herself out — and asking family to do so, when they may have their own weather emergency to deal with, is difficult. And local municipalities may not prioritize that area for snow plowing.

“It’s uncomfortable because it takes sacrifice from [family]. If you’re with me during a power outage, and your 5-year-old is at home, how are you going to do that?” Flores asked. “What has happened to me is that I’ve had to wait, stuck at home in a snowstorm, waiting for my person to come to me because I can’t meet them anywhere. And I hope that they can make it up my driveway.”

How do utility companies factor caregiving into emergency plans?

Amid a growing number of power outages and more severe weather events, utilities in many places are under greater scrutiny about their level of preparedness in keeping the electricity flowing and customers safe. For instance, the Detroit News reported this summer on “a public backlash against DTE over widespread power outages that left more than 500,000 DTE customers without electricity in February.”

The News also reported that Trevor Lauer of DTE Energy “has apologized for the outages and told state lawmakers that accelerating investment in the power grid, amid a changing climate, would be key to limiting future problems.”

In such severe weather events, utilities seek to restore power first to hospitals, nursing homes or care facilities and fire/police stations, followed by areas with the most dense population.

Customers using life-sustaining, power-generated equipment at home and who’ve lost power should contact their utility immediately, Dave Akerly, spokesperson for DTE Energy in Michigan, said.

“If we can do so, we will try to prioritize restoration for them, and we will work to set up a generator for their life-critical equipment to keep them safe,” Akerly said.

DTE delivered generators to more than 40 customers who needed power for life-critical equipment during the February ice storm, he added. Caregivers can alert DTE about critical health situations by calling (800) 477-4747. In New York, Rochester Gas & Electric encourages customers to keep an outage reporting number handy — (800) 743-1701 — and be ready to give their account numbers.

Customers can also sign up for mobile phone alerts to receive the latest information on an outage. If a family decides to have a generator, follow instructions and operate it in a clean, dry, well-ventilated place and never indoors or in a garage, according to RG&E.

Emergencies can happen at any time and people who are caregivers for individuals who have significant medical needs .. need to have plans and backup plans in place to handle disruptions.”

Kara kane, erie county health department

Register as a life support customer in the Buffalo region by calling National Grid at (800) 642-4272 or New York State Electric and Gas at (800) 572-1111. 

In Erie County, all residents can get an emergency preparedness app for their cellphone. Caregivers and those with medical needs that require a constant supply of electricity at home can file a functional needs registry form online.

Brandon Lewis, director of emergency management and communications in Macomb County, Michigan, recommends vulnerable populations plan ahead for extreme weather events.

“It’s a lot easier to react to a situation like that if you’ve actually sat down and kind of wrote it out and thought about it,” Lewis said, adding that many communities operate warming or cooling centers during weather events, which could also offer power sources.

“It is a good idea to talk through common emergency scenarios, like power outage or loss of transportation and impassable roads, with a medical provider, case worker or trusted friend to come up with plans that make sense for your household,” said Kara Kane, spokesperson for the Erie County Health Department. 

“Emergencies can happen at any time,” Kane said, “and people who are caregivers for individuals who have significant medical needs that require consistent electricity or oxygen, regular transport to medical services like dialysis, or critical pharmaceutical needs like suboxone need to have plans and backup plans in place to handle disruptions.”