Caring for you, because they have to

“She loves feeding the birds, and it started way back then,” Lange said. “And I’m like, ‘OK, but you can’t be doing this at two o’clock in the morning.’”

In 2016, Lange and her mother moved to Little York in Cortland County to be closer to family. While Lange is the primary caregiver who cooks, cleans, and dresses her mother, she has hired her aunt, cousin, and one other paid caregiver to look after Suzanne while Lange works at Upstate Community Hospital during the week and at night.

However, in the first few years, Lange slept on the couch outside her mother’s room, dozing on and off, and would get only four hours of sleep, waking at 2 or 3 a.m. to check on her mother before getting ready for work at 6 a.m. In January 2019, Lange was diagnosed with multiple sclerosis.

“With the number of lesions that are on my brain, they said I probably had it for years and just didn’t know it,” Lange said.

Caregiver stress is something Sue Spina, a licensed social worker for local home care service Nascentia Health, sees every day. Spina said the caregivers she gets referrals for, who are mostly women, feel depressed, anxious, and overwhelmed.

“When you become a caregiver, depending on the diagnosis and the prognosis, you often neglect yourself,” Spina said. “When you push yourself aside, and you’re not acknowledging what your needs are, sooner or later, something is going to give.”

Informal caregivers are unpaid friends or family members who are providing regular care to someone with a health problem or disability. In 2017, when Joanne Crook’s husband Mark survived a stroke that paralyzed his left side, she retired early from her job as a 911 operator for Onondaga County to become his sole caregiver.

“I knew he needed 24-hour assistance. He had to be with somebody,” Crook said. “There was no way that I could work and take care of him. Even having somebody come in, that’s a big expense. I’d be working just to pay that person.”

While the act of caregiving and the need to become a caregiver can be different for everyone, Spina said the reason she believes caregiving falls on women more than men is because of society’s expectations.

“We’re evolving over time, but I think women are nurturing,” Spina said. “They have a sense of responsibility and duty. We always have that tendency to be different from the men in those regards.”

Although Crook’s husband can walk with a cane, he still needs help balancing himself when getting up and down, in addition to dressing and showering. Crook also does all the chores around the house. But her caregiver stress doesn’t come only from physically taking care of Mark.

“When he thinks that he can do something that I know he can’t, trying to tell him no but still trying to keep his spirits up is a stressful thing for me,” Crook said. “It’s the little things that really bug me. Everything takes a lot longer than it used to.”

Renee Moonan, an account executive for Eagle Newspapers, is the main caregiver for her 95-year-old father Gilbert Bonin, along with her sister, brother and four paid caregivers. Moonan’s caregiver experience began when her mother’s health started to decline, and her last few years in and out of nursing homes before she died in 2018 convinced the family to transition their father to home care.

After a lot of reassurance, Moonan’s father enjoys the paid caregivers who bring him food and clean his house. All of his caregivers leave notes in a notebook on the kitchen table that record his daily blood pressure, pulse, weight, overall mood and housekeeping reminders about doing the dishes or laundry. Now, her father is thriving on his care plan, and as his caregiver, Moonan said it’s easier to take care of him when he’s in his own home.

“Everything about his care is managed,” Moonan said. “It’s unfortunate because that’s what my mom needed, but we just weren’t strong enough. The better care is definitely at home.”