Caregivers don’t always sign up for their roles. Often, they’re thrust into the position when a spouse or parent’s health starts rapidly deteriorating and they can no longer care for themselves. It’s a necessary transition, but caregiving can be incredibly taxing.
For those watching over someone with Alzheimer’s or dementia, there's a network of other caregivers to provide education and emotional support in McLean County. There are at least four caregiver support groups in the county.
Mary Sanko has been leading a group affiliated with the Alzheimer’s Association for over two decades. It meets at Calvary Methodist Church monthly. Before that, she was a caregiver for her mother, who had Alzheimer’s.
“It’s a 24/7 job,” Sanko said of caregiving.
People with memory issues often have erratic moods and behavior, which can cause them to make dangerous decisions, like trying to use the microwave settings for the stove or driving aimlessly until they run out of gas, stranded in the middle of nowhere because they don't remember how to get home.
As a result, caregivers are hypervigilant. Many will hide shoes or keys, or have to put locks in place to keep their loved one inside. When the memory deteriorates to a certain point, caregivers cannot leave their loved one alone for more than a few minutes.
"It can be very isolating," Sanko said.
McLean County doesn’t have an adult day care or adult day service, which provides opportunities for caregivers to drop off their loved ones while performing necessary tasks and have some time to care for themselves. (The closest daycare is in Urbana, according to the East Central Illinois Area Agency on Aging.)
Alternatives available in the county, such as at-home care and facility intake, are often too expensive.
Support groups offer a sounding board for ideas of how to keep loved ones safe, and the much-needed reprieve many don’t get otherwise.
Sanko said support groups help caregivers combat the inherent loneliness of the role.
"It's freeing for them to know that they're not alone, that someone else is there," she said.
Lisa Graf learned this for herself when she started attending Sanko’s support group after her father was diagnosed with Alzheimer’s.
“You meet people (of) all different ages,” she said. “Some people caring for spouses, some caring for parents, and just talking through, ‘Well, we tried this, well, that didn't work. Well, we tried this, and, oh, that's a great idea. Let's try it.’ So just somebody to talk to that's going through similar things that you are."
‘We were all just lost’
When Normal resident Julie Rhoades learned her husband might have dementia, she said her family had no idea what to do.
“We were all just lost,” she said. “That’s when It became very scary.”
Once her husband was formally diagnosed, she said those feelings didn’t leave. No one — including doctors — were giving her advice. Meanwhile, her husband needed constant care for fear he’d accidentally harm himself.
“There’s no thinking about taking care of yourself because you are so overwhelmed with fear,” she said.
Support groups combat that feeling, said Shell Giermann, a caregiver and leader of the support group Rhoades attends.
“We need somebody to say 'You're doing a great job,' or 'Maybe it's time to take a break,'" she said, adding that this is part of what she does during meetings.
Rhoades said her support group is “like a big family.”
“We're there for each other,” she said. “When one of us is crying in the hallway another one will come up.”
The support group Rhoades attends is mainly for people whose loved ones are in Sugar Creek — where her husband now resides — but there’s also the group Sanko co-leads, another that meets at Luther Oaks retirement community, and then a second that meets at the ARC.
‘Maybe I’m a caregiver’
Angie Raymer, the McLean County family caregiver advisor with Community Care Systems (CCSI), leads the second group that meets at the ARC. She broadly defines caregiver as anyone looking after someone who is not their child.
Caregivers can work in units or alone. Graf and her mother looked after her father together and are caregivers by Raymer’s definition. Caregivers can also look after someone who no longer lives with them, such as Rhoades and Lee Anderson, whose husbands are both in Sugar Creek.
While he’s being cared for by professionals, Anderson said there are still times she needs to watch out for her husband.
When her husband lost a significant amount of weight, she realized he’d been given the wrong medication dosage and got that corrected. She can also understand certain quirks of his behavior that can be helpful to staff. When he recently started standing and stomping on chairs, Anderson identified that he’d been forgetting how to sit down and warned staff.
“You still have to advocate for them,” Anderson said.
It’s unclear exactly how many caregivers are in Bloomington-Normal — or greater McLean County.
One reason is that no one really seems to keep track. Then, there’s the self-identification issue.
Raymer said not enough people identify as caregivers.
“I have people that come to the support group meeting that say, ‘Oh, my daughter told me to come here, I don't really think I need it. I don't really think I'm a caregiver. It's just me and my husband,’” she said.
Part of her job has become coaxing people into recognizing they are caregivers. She asks who does chores like shopping and cleaning, then goes deeper, asking who does the bathing. After repeated “I do” responses, Raymer said people will say “Maybe I’m a caregiver.”
The more people acknowledge their role as caregivers, the more opportunity Raymer has to help. CCSI can connect caregivers with limited funds to help with a short facility stay or at-home care when needed.
There’s also money for Raymer to get supplies such as coloring books, which can be useful for people with memory issues. She can also procure cameras, so caregivers can watch their loved ones on a phone app while they run to the store.
During meetings, she said she frequently sees people checking their cameras. Meanwhile, she’s diligently taking notes about each person in attendance and trying to think of ways to use her funds to help them.
A growing network of caregivers
Anderson attends multiple support groups and said the groups are “vitally important for people.”
“I can't express enough how much the caregivers groups helped me,” she said.
Anderson got what she calls her caregiver support group bible at one of the first meetings she attended. It's a stapled paper packet with information about Alzheimer's and dementia, and how to take care of someone with either disease.
One page has handwritten notes from another caregiver she met.
She's held onto it for a year and a half, making copies to pass on to other caregivers she meets through support groups. It's one of the ways McLean County's caregiver support network continues to grow.
