There is a moment in many families when the relationship between parent and child begins to change. Sometimes it happens gradually, through an extra phone call, a ride to an appointment, or a little help around the house. Other times, a diagnosis or unexpected health crisis changes everything. The person who once cared for us begins to need our care, and what started as helping becomes a responsibility we never quite anticipated.
Robyn Kessler understands what happens in that transition. As Caregiver Support Services Supervisor at AgeSmart Community Resources, she leads a team that helps family caregivers throughout Southwestern Illinois navigate difficult decisions, find resources, and maintain something that can be easily overlooked: their own identity.
“So our goal is to primarily support educate and provide resources for those family caregivers,” she explains. “But there’s a lot of people that care about that person and the caregiver goes to the wayside and they almost get lost in their identity.”
During National Family Caregivers Month, Robyn’s message is a reminder that caring for someone and caring for yourself should not be competing priorities. AgeSmart’s mission is not simply to connect older adults with services. It’s also to make sure the people who love and support them aren’t forgotten along the way.
When the Family Role Changes
Robyn came to AgeSmart after working as a certified nursing assistant in a hospital. There, she witnessed exhausted family members trying to understand tests, medications, and the next steps for someone they loved. Even when a relative was hospitalized, caregivers were not necessarily getting a break; they were advocating, asking questions, and trying to follow complicated information in a fast-moving environment.
That experience now informs how she helps families navigate caregiving. Some come to AgeSmart seeking a particular resource. Others need more time to talk through their circumstances, including the emotions that aren’t always easy to admit.
“No caregiving journey is the same,” Robyn says. She describes families dealing with siblings who disagree, the financial consequences of retiring early, and younger caregivers who are also raising children. There may be resentment, guilt, exhaustion, or fear alongside genuine love.
“Sometimes it’s just a listening ear, sometimes caregivers just want to be validated and not have somebody come up with the solution,” she explains.
One of the hardest changes can be emotional rather than logistical. A parent or spouse may still be physically present but no longer behave or communicate in familiar ways because of dementia, stroke, or other changes in the brain.
“I hear frequently. I just want my mom back. My mom is who I went to,” Robyn says, recalling what caregivers tell her. “Now she’s there, but she’s not there.”
These are phrases she hears from the people she guides, and they reveal a particular grief: missing someone who is still there, while continuing to care for them.
Robyn understands family caregiving from personal experience, too. Her grandmother had Alzheimer’s disease, and her father took care of her. AgeSmart existed at the time, but the caregiver-support services available today were not yet the same. When Robyn later explained her work to him, his response stayed with her.
He became emotional and told her, “I wish that there was stuff like this when I took care of your grandma,” she recalls.
More recently, Robyn’s own family navigated caregiving for her mother, who passed away in September. Her sister, who lived with their mother, became the primary caregiver, while Robyn provided backup care. Even with professional experience, Robyn found herself disagreeing with her sister about the best approach.
“Caregiving is complicated,” she says. “Feelings are complicated. Family makes things so much more complicated.”
The experience reinforced something she tells other families: knowledge doesn’t erase the emotions or competing perspectives that can surface when people are worried about someone they love.
More Than Five Decades of Helping Families
Founded in 1974, AgeSmart Community Resources is the designated Area Agency on Aging for seven Southwestern Illinois counties: Bond, Clinton, Madison, Monroe, Randolph, St. Clair, and Washington. Its work includes advocacy, information and assistance, caregiver support, and connections to community organizations serving older adults and their families.
Robyn calls AgeSmart something like “caregiver, Google or a one-stop shop.” The difference is that families are not left alone to sort through an overwhelming list of options. Caregiver specialists can help identify what is happening in a household, understand the caregiver’s needs, and match them with appropriate resources.
Those resources might include adult day programs, respite care, counseling, legal assistance, benefits guidance, or help exploring Medicaid and home-based services. AgeSmart can explain concepts such as powers of attorney and refer families for legal support, though its caregiver team does not complete legal documents for them. Some referrals involve outside providers whose services may have their own costs, but contacting AgeSmart for information and referral assistance does not carry a charge.
A caregiver can call the organization or start with the TCARE Caregiver Assessment available through AgeSmart’s website. That assessment helps the team understand caregiver stress and connect the person with a specialist who fits their situation.
The relationship also does not necessarily end with the first phone call. Robyn explains that caregivers may receive follow-up every three to six months, depending on where they are in their journey, so resources can change as the family’s needs change.
“We’re able to really tailor that support and resources to what they’re going on at that moment,” she says.
Sometimes help is as practical as finding someone to prepare meals or help with household tasks. Relieving a spouse of those duties can create room for something far more valuable: being a husband or wife instead of spending every moment managing care.
Coffee, Conversation, and Community
Of all the programs Robyn discusses, Caregiver Coffee House holds a particularly special place in her heart. She started the gatherings approximately two or three years ago as an informal way for caregivers to spend time with people who understand their experiences.
“My coffee talk group is my baby,” she says.
Robyn is careful not to describe Caregiver Coffee House as a traditional support group. There is no required agenda, and caregivers do not have to arrive prepared to explain their difficulties or tell their stories.
“I don’t come with a game plan on what we’re going to talk about,” she says. Sometimes the conversation turns to caregiving. Other days, people talk about holidays, vacations, or childhood memories, and the person receiving care may never come up at all.
That freedom is part of the appeal. Caregivers can find themselves so consumed with someone else’s needs that socializing becomes difficult. Even when they have friends, those friends may not understand the stage of life they are navigating.
Robyn remembers one woman who expected a more conventional support group and was surprised by what she found. The woman enjoyed the relaxed conversation so much that she became a regular attendee.
AgeSmart’s Caregiver Coffee House gatherings currently take place on the first Wednesday of each month at CoffeeHouse Company in O’Fallon and the third Wednesday at Pour @ 322 in Belleville. Robyn also describes partner gatherings through St. John’s in Collinsville and Maryville. Families should contact AgeSmart to confirm current locations and times.
The appeal goes beyond coffee. In Robyn’s words, “they might have other pillars out in their life, but they might not be at the same part they are in their day.” Caregiver Coffee House makes room for relationships with people who understand this particular chapter, without requiring every conversation to be about caregiving.
The Support Caregivers Need—and How to Ask for It
Caregivers often hear the well-intentioned words, “call me if you need me.” Robyn notices how differently communities respond when a baby arrives compared with when an older relative becomes ill.
“When we have children, we have this village. Everyone wants to come see the baby, but when it’s an aging parent, it’s, call me if you need me,” she explains.
A new baby’s needs may seem familiar and joyful. Serious illness can be frightening or unpredictable, especially when dementia or physical decline changes how someone behaves. As a result, people who genuinely want to help may hold back because they are unsure what to do.
Yet caregivers need that village just as much. Specific offers—sitting with a loved one, helping with errands, preparing a meal, or providing an afternoon of relief—can make help easier to accept.
Setting boundaries is another challenge. Robyn emphasizes that boundaries can be necessary without becoming harsh. A caregiver who cannot take a parent to an appointment on Tuesday, for example, may be able to offer a different day. She encourages people to use “I” statements and, where appropriate, a “no, but” response that explains what is possible instead of simply expressing frustration.
Family dynamics make that balance even harder. Siblings who do not provide daily care may have strong opinions about decisions, while those sharing the work may disagree about what is best. Robyn knows this from her own family, and her experience adds humility to the advice she offers.
Help Before the Crisis
Robyn wants families to know they do not need to wait until they are overwhelmed to reach out.
“I always tell people that when they start their caregiving journey is never too soon to look at resources and support,” she says.
Support can also extend beyond the home. A loved one moving into a facility doesn’t mean the family’s caregiving role disappears. Family members may still advocate, visit, make decisions, and carry the emotional weight of care.
AgeSmart’s network also helps families find diagnosis-specific groups, virtual caregiver support, adult day programs, and memory cafés where people living with dementia and their caregivers can participate in activities and social connection together.
For Robyn, the challenge is making sure families know the organization exists. Her father’s reaction to learning about the caregiver support available today is a reminder of how valuable that knowledge can be—and how painful it can be to discover it only after a caregiving journey is over.
Caregiving changes relationships and rearranges lives. It can bring tenderness and closeness, but also grief, exhaustion, and an unfamiliar sense of self. Through Robyn and the AgeSmart team, caregivers have somewhere to begin: a knowledgeable person to call, practical resources to explore, and a community that understands.
Because the person doing the caring deserves to be cared for, too.
Connect with AgeSmart Community Resources
Website: https://www.agesmart.org
Phone: 618-222-2561
Email: ask@agesmart.org
Office: 7 Bronze Pointe South, Suite B, Swansea, Illinois 62226
Caregiver Assessment: https://www.agesmart.org/caregivers_tcare
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