Michelle: A Caregiver With a Chronic Illness Struggles to Make Ends Meet

Michelle is the primary caregiver for four people. But a chronic illness and complicated bureaucracy have made it difficult to provide for those she loves.

• Michelle has spent years battling a chronic illness that has made it impossible to work. After being denied disability benefits because of a clerical error, she had to start the years-long application process over. 

• As the primary caregiver for her mom and aunt, Michelle manages their finances and medical care. Because of the pandemic, she wasn’t allowed to visit them in their assisted living facility for more than eight months. 

• As Michelle looks to the future, she is hopeful that she will be able to care for her family in person again soon and receive treatment that will alleviate her condition. 

A turn for the worse

The sign at the dealership just outside Milwaukee promised good prices and cheap financing. But Michelle wasn’t there for either. She dropped off the keys to the leased car she could no longer afford and caught a ride home from one of the employees of the lot where she’d been a regular customer for 15 years. 

For the first time since she was a teenager, Michelle was without a vehicle. She was also without a job and was worried she would soon be without a house.

It was a devastating situation, especially for someone who had spent decades building financial security. Even after she had her first child at 18, Michelle kept a day job and grabbed shifts at a local bar or gas station to keep herself independent. For decades, she worked as a benefits administrator for a company that dealt mostly with trade unions.

“It’s a full-time job taking care of everyone else.”

Between her job and side hustles, she did okay. She owned her home and even had money to get a boat and an above-ground pool. “I paid double on my mortgage and home equity, and all my credit cards were paid off,” she said.

But she always carried a heavy load at home. Like the eight percent of SaverLife members who care for elderly or disabled family members, Michelle is her family’s caretaker. For years, she looked after her ailing grandparents, then her dad, and now her mother and aunt, who are beset with early-onset dementia. She is also raising two teenage granddaughters while their father is incarcerated. “It’s a full-time job taking care of everyone else.”

Three years ago, though, she became the one needing help. The first sign came when a coworker joked that she looked funny. When Michelle went to look in the mirror, she saw that her ear was inflamed. Soon, the entire right side of her face became paralyzed.

A host of other ailments followed. Michelle’s vision became spotty, and she had trouble hearing. She developed chronic insomnia and severe headaches. One eye wouldn’t close. “I had to tape it shut to sleep.”

She was diagnosed with an auto-immune disease. “A doctor told me it was going to be a lifetime issue,” she said. “My nerves were attacking each other.”

Her primary physician suggested the stress of her job was making it worse. “I took 80 phone calls a day. People were lined up at my desk waiting. You didn’t sit still for a second.”

In January 2017, she handed in her notice, hoping the lack of stress would heal her body. But her problems only worsened. She applied for disability.

The home front

Soon, Michelle became overwhelmed by the needs at home.  “The majority of my time was spent taking care of my mom and aunt,” she said. “They were used to me taking them out to eat, taking them shopping, or to get pedicures.”

In 2019 she made the difficult decision to place them in assisted-living to ensure they got proper round-the-clock attention. She still took them out for activities nearly every day. But once COVID hit, even that became impossible. Visits were banned. 

Seventeen percent of female SaverLife members have been personally impacted by a loved one catching COVID-19.

Michelle struggled to communicate why she could no longer see them and why they could no longer leave. Without outside contact, their dementia worsened. They started to call her a half-dozen times a day. “They were so confused,” Michelle said. “They didn’t understand what was going on.”

In November 2020, a wave of COVID-19 infections swept their facility, and both women contracted the virus. Michelle was scared. Seventeen percent of female SaverLife members have been personally impacted by a loved one catching COVID-19.

Michelle is desperate to see them again—sometimes, she’ll stop by the assisted living facility and wave at her mom and aunt through their window. “They’re happy even if they can see me through the glass.”

Her own health, meanwhile, remains poor. “I have days where I literally can’t do anything,” she says. Michelle has yet to receive any disability benefits.  

A long fight

After her initial disability claim was denied in 2017, it took her nearly three years to take her case to court. In the meantime, she exhausted her 401k and took out equity loans she could soon no longer afford, putting her house at risk.

“I feel like I’m in the same place I was 30 years ago.”

In October 2019, she finally sat in a small courthouse room before a video feed of a judge in another state. Because of her health, Michelle struggled to hear him. “He said something that sounded like ‘It doesn’t show you’re getting any treatment,’” she said. She wanted to point him to her medical records, but her lawyer had advised her against talking. More than four months later, she received a letter denying her application because there was no reason she shouldn’t be able to work. 

It took her months to piece together what had happened. After going back and forth with the disability office, she confirmed they had been contacting the wrong doctors’ offices and finding no record of her receiving medical treatment.

“Now I have to go through the process all over again,” Michelle said. It could take years for her case to work its way back through the system. She’s hoping to get approved for Social Security in the meantime so she can collect her pension early. 

“I feel like I’m in the same place I was 30 years ago,” she said. “I got myself ahead in the world when I was struggling then, but now I can’t go work a couple of jobs to fix it like I normally would.”

If Michelle had been paid for her caregiving work, her circumstances would be different. “It would have been nice because caregiving is a full-time job,” Michelle said. “Between calls, doctor’s appointments, and taking them out. It’s hard because you’re doing a full-time job but you don’t get paid for it.”