BLOOMINGTON — "I've been a caregiver my whole life," said nurse Cheryl Stevens. "Taking care of patients with dementia is my niche."
Then she looked at her husband, Les Stevens.
"But taking care of my husband with cancer — I feel inadequate," she admitted.
Bonnie Bury doesn't consider herself a caregiver to her mother, Lucille Falley, who has dementia, even though Bury handles her mother's finances, oversees her medical care and living arrangements, takes her to doctors' appointments, attends all her care plan meetings and spends time with her three times a week.
"I consider myself a behind-the-scenes caregiver because I don't dress her and feed her regularly," Bury said.
The expressions of inadequacy by Stevens and self-deprecation by Bury are common among caregivers. That's why it's important during the busy holiday season for family members and friends to offer help and support to people who care for loved ones.
"It's very difficult to imagine what it's like to be a full-time caregiver of a loved one unless you've done it before," said Theresa Dewey, manager of care navigation and early-stage engagement for the Alzheimer's Association Illinois Chapter.
"People think 'Oh, you're just reminding him or her of things,'" Dewey said. "But there are thousands of small things that are done, including anticipating the person's needs. Caregivers do those things, often to the detriment of their own needs."
"Caregivers are often overwhelmed by their caregiving role," said Candi Gray, social worker at the Community Cancer Center in Normal. "The diagnosis of cancer is overwhelming itself but then they are taking on so many more responsibilities."
Caregivers don't just take care of loved ones with dementia and cancer. Stroke and trauma survivors as well as patients who have Parkinson's disease, brain injury, spinal stenosis, congestive heart failure, vision and hearing impairment and mental illness, among other diagnoses, also may need caregivers. In some cases, loved ones are simply old and frail.
Caregiving may include not only taking a loved one to appointments and overseeing medication management but taking over responsibilities including finances and paying bills, yard work, housework and laundry, grocery shopping and cooking, Gray said.
Sometimes, caregivers feel guilty because they don't do those things as well as their loved one did.
Stress from caregiving — while trying to keep up with life's other responsibilities — may result caregivers not taking care of their own health, resulting in high blood pressure, diabetes, congestive heart failure, depression and anxiety, Dewey said.
"Often times, caregivers have full-time jobs and their own families and are trying to balance that with being a full-time caregiver," said Rose Stadel, facilitator of the Caretakers' Path Support Group in Bloomington. "Caregivers become overwhelmed and stressed. Caregivers are notorious for not taking care of themselves."
"It's not uncommon for caregivers to quite literally work themselves to death," Dewey said.
"If you don't take care of yourself, how can you take care of someone else?" asked Wonea Garrett, caregiver adviser for McLean, Livingston and DeWitt counties for Community Care Systems, which works to keep older adults in their homes.
Les Stevens, 69, of Chenoa, who retired from the Chenoa Police Department in 2010, was diagnosed with prostate cancer in May 2017.
"I told him 'It's gonna be OK,' but inside I was screaming," admitted Cheryl Stevens, 67.
Les Stevens is undergoing radiation treatments at the Community Cancer Center in Normal. Side effects include an increased urgency to urinate and move his bowels, fatigue, and some blood in his urine and stool.
His PSA (prostate-specific antigen) levels will be checked again in March. "If my PSA is down, the radiation worked and the cancer is under control," he said. "If my PSA is not down, my prostate will be removed."
"It's like giving up your independence," he said of his wife helping him. "I felt like I had to take care of the entire town of Chenoa. Now I feel like I can't take care of myself."
Falley was living in an independent living apartment in Meadows, with Bury living nearby in Chenoa, when she and other family members began noticing things like Falley putting money in the freezer, ordering more checks when she didn't need them, not paying some bills and forgetting how to get to church.
The final straw was Mother's Day 2012, when Falley called the sheriff's department to report that someone had broken into her apartment and there was a little boy running around stealing things. It wasn't true.
Bury stayed with her mother for several days until she could be moved to Bickford House in Bloomington. Bury, who already had power of attorney, assumed more responsibilities. She and her daughter, Jessica Carmany of Bloomington, began attending the Caretakers Path Support Group.
"We learned that we're not alone in this," said Carmany, 32.
Falley, 89, moved two years ago to Evenglow Inn memory care unit in Pontiac and recently moved to Evenglow Health Care Center after a fall, said Bury, 64.
Once angry about Bury assuming more responsibilities, Falley is now complacent.
She recognizes Bury but no one else. She responds to questions with short phrases. Usually they make sense, Carmany said.
People who wish to help a caregiver should give of their time, Bury said.
"Sit with the person (the loved one) for a couple of hours to give the caregiver a break," she said.
Listen to the caregiver and don't judge.
"People ask me 'How is Les doing?' but what about me?" Cheryl Stevens said, admitting she felt guilty verbalizing that.
"She's going through the process, too," Les Stevens said.
Run an errand for the caregiver, such as going to the grocery store.
And don't forget to invite the loved one and caregiver to holiday activities. People sometimes assume they are too sick and tired to attend but it's always nice to be invited, Les Stevens said.
"We still need to do normal things," Cheryl Stevens said. "You don't want to take that away from us."