I became a caregiver to my father, John, in spring 2023 when I moved back to Northwest Indiana following the unexpected death of my mother. I made several trips home from Colorado after Mom died, which helped me realize that Dad’s dementia was progressing. He is 92 and has Lewy body dementia, and he needed someone to manage his bills and finances, mail, medical care, cooking, and more.
At the time, I felt like I could soon be well-prepared for this new role. I enrolled in several online courses through Teepa Snow’s Positive Approach to Care, joining caregivers from across the U.S. and Canada. Snow, an occupational therapist, helps caregivers better respond to the actions that brain changes cause in loved ones.
The caregivers I met shared stories of what life was like taking care of a loved one with dementia, which helped me feel less alone. Many of them had situations that were far more complex than what I was dealing with at the time.
Despite the newfound knowledge, I quickly discovered that unexpected issues always arise as a caregiver, even years into the journey. It’s impossible to be prepared to handle everything that comes your way.
On the flip side, there are lots of caregivers who’ve been through what you’re experiencing. Don’t be shy about reaching out to others in your time of need. Here are three caregiving lessons that I and others have learned along the way.
One of the best decisions I made was finding a geriatrician to care for my dad. I wish I would have started that search as soon as he was diagnosed with dementia in July 2023. Instead, I thought he was in good hands with his primary care provider, who specializes in family medicine, given his history and rapport with my father. But as dad’s dementia progressed, I ran into serious communication issues with this clinician, who seemed to lack training in patients with dementia.
When the doctor asked my dad about things like incontinence, my dad would say that everything was fine, that he wasn’t having any issues with toileting. The truth was his incontinence was getting worse week by week.
I was unprepared for what was happening. I pleaded with the doctor through MyChart, sharing specifics, and spoke with nurses on his team. I began taking more photos with my phone to show that I wasn’t making things up. But the doctor told me that he could only go on what my dad told him during appointments.
Exasperated, I sought advice from a dementia care specialist who taught one of the courses I took and scanned online forums like AgingCare.com for answers.
When things came to a head, I found an experienced, compassionate geriatrician with a multidisciplinary team through the University of Chicago Medicine. This physician even makes house calls within the city.
I nearly cried after my dad’s first appointment, having felt like a physician finally listened to my observations. That day, I left the clinic with a better understanding of my father’s dementia and a plan for addressing any issues.
Christina Bernhardy, a licensed clinical social worker and geriatric specialist at the UChicago Medicine clinic where my father is treated, says that finding a skilled geriatrician makes a huge difference.
“Many [family] caregivers are not prepared, in general, or educated about the diseases that they’re caring for,” she says, adding that a clinician should explain the diagnosis and any changes to expect as the disease progresses.
Bernhardy, who runs a support group, says she finds that a lot of caregivers feel surprised by others’ lack of support.
“They’re taken aback to realize: ‘I’m kind of in this alone,’” she says.
Chicago resident and retired professor Beatriz Badikian-Gartler was a caregiver for her husband, David, who was diagnosed with Alzheimer’s disease before he died in September 2025. She described the experience as exhausting.
Shortly after the couple moved into an assisted living facility, Brookdale Lake View, David went for a walk one afternoon and got lost. He had left without keys, his wallet, or a phone.
Though he hadn’t walked very far, nobody found him until five hours later. Police got involved, though a good Samaritan found him and contacted a family member through Facebook.
“It was really very, very stressful when that happened,” Badikian-Gartler says.
As her husband’s condition progressed, he would fall frequently, sometimes in the middle of the night. Badikian-Gartler eventually had to call 911 when she couldn’t lift her husband off the floor. The constant threat of falls also meant she stayed with her husband 24/7.
“I had to be there all the time,” she says.
Unfortunately, she couldn’t convince family members to help give her a break, though she says they offered to find resources or services to ease the burden.
Eventually, Badikian-Gartler hired caregivers.
“I would ask them to spend more and more time,” she says. “I hired someone who would come at about 10 o’clock at night and sit there until the morning, just watching him, so that if he tried to get up, she would stop him. And, you know, that was a big thing that really helped.”
“There is nothing you can do to stop the disease,” Badikian-Gartler says. “All you can do is try to make things easy and pleasant for yourself and for the person” you’re caring for, she says.
Mike H., also a Chicago resident, is a caregiver to his wife, Sue, who has Alzheimer’s and Parkinson’s disease. She moved into the Selfhelp Home Senior Living Community on the city’s North Side in June 2023. Mike lives a few blocks away.
“You never know what a day is going to be like,” he says. “It could be a great day; it could be a crappy day; it could be medium.”
Sue had agreed that she would move to Selfhelp — where Mike had previously gone for physical therapy — when it was time. But she disagreed with Mike about when exactly the time had come.
“That was a constant issue,” he says.
The couple would go for walks and talk about her making the move. Then, she would change her mind.
Fortunately, after two weeks of living at Selfhelp and despite a few “jail breaks,” Mike says she fell in love with the place.
“She made all kinds of friends,” he says.
One of the most important things Mike says he’s learned: not to judge your loved one and their actions.
“It’s unbelievably important,” he says. “If she thinks that I’m disapproving of her, that’s going to serve no good purpose. How I make her feel is more important than what I say. She is, and needs to always feel, deeply loved.”
Passing judgement could also create reluctance in the care recipient to say or share anything, out of fear they’ll be scolded or looked at differently.
“At a certain point in their lives, it doesn’t matter if they’re wrong or right,” Mike says. “Get in the moment with them. Talk appropriately with them.”
I’ve experienced this realization with my father, too. Early on, when something he said would take me by surprise, I wouldn’t know how to respond. Now, I’m much better at going with the flow instead of trying to come up with a solution in the moment.
While watching the Super Bowl in February, for example, my father commented on objects he saw emerging from a heating vent near the ceiling.
“Did you see that?” he asked with amusement, pointing at the vent. (My father experiences hallucinations and vivid dreams with his Lewy body dementia.)
“What do you see, Dad?” I asked him. “I’m sitting at a different angle than you, and I’m not sure what you’re seeing.”
My father described pieces of cardboard with cut-out shapes on them floating across the ceiling.
“I need to find a science teacher who can explain what I’m seeing,” he said, chuckling a bit.
Sounds like a good idea, I thought to myself.
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