There are things you expect to worry about when someone you love has dementia: falls, wandering, medications, finances, whether they are eating, whether they are safe, whether they know where they are.
There are also things no one tells you might someday make the list.
Yesterday, I added one.
Jail.
I received a call from my mother’s assisted living facility telling me that a private caregiver for another resident had called 911 and alleged that my mother had struck her. The caregiver wanted to press charges. By the time I arrived, law enforcement was already there.
One of the officers explained to me that if Mom admitted to making physical contact with the caregiver, they would have to arrest her. I felt completely helpless.
They took Mom into a private room to question her, and I went in with her. They asked me not to answer for her or help her, so I sat quietly and held my breath while she tried to explain what had happened.
The problem was that she couldn’t give them a coherent sequence of events. All she could focus on was how the caregiver had made her feel.
That is what dementia does to her now. Her mind gets caught in a constant loop. The details disappear, but the emotion remains. She may not be able to tell you exactly what happened, in what order, or even when it happened. But she can hold onto the feeling of being scared, angry, hurt, or threatened and return to it again and again as though it is still happening.
Then the officers began asking basic orientation questions.
What day is it? She didn’t know.
What year is it? She didn’t know.
Who is the president? She didn’t know.
How old are you? Still nothing.
She tried so hard to answer. She looked to me for help, and every instinct in me wanted to give it to her. But I remained silent, as I had been instructed to do.
I sat there listening to my mother search for information that once would have lived effortlessly in her mind. At one point, one of the officers stepped out of the room. A few minutes later, he came back and handed me a tissue.
I had started to cry.
Not because the officers were being cruel. They weren’t.
Quite the opposite.
I think he saw what I was seeing: a 75-year-old woman with advanced dementia trying desperately to answer questions she no longer had the cognitive ability to answer, and a daughter sitting beside her, terrified that, depending on what she said, her mother could potentially be taken into custody.
Ultimately, there were no witnesses. Mom emphatically denied striking the caregiver, and law enforcement determined there was no probable cause.
But the experience left me with a much bigger question.
How do we respond when behaviors caused by dementia collide with systems built around the assumption of rational, intentional behavior?
Dementia is not simply memory loss. It can bring agitation, paranoia, accusations, impulsivity, fear, resistance, anger, possessiveness, language that is completely out of character and, yes, sometimes physical reactions.
That does not mean caregivers should be expected to tolerate unsafe situations. It does mean that anyone caring for people with cognitive impairment has to understand that conflict cannot always be handled the way it would be between two cognitively intact adults.
You cannot always reason someone out of a reaction their diseased brain has created. You cannot necessarily tell them to “stop” and expect that instruction to land. You cannot assume they will remember the conversation five minutes later.
Sometimes the responsibility falls on the cognitively intact people in the room to disengage, redirect, de-escalate, and get help.
After everything was over, Mom stayed in her room for the rest of the day. She was shaken. She was afraid. And, heartbreakingly, she did not want to come out because she did not want to “cause problems.”
Today, her doctor saw her. She was amazing with Mom. She listened, evaluated what had happened, and adjusted Mom’s medication to better address the anxiety and agitation that can accompany her disease. She also talked with us about what a more appropriate medical response should look like if something like this happens again.
That contrast has stayed with me.
One response viewed the situation through the possibility of criminal behavior. The other viewed it through the lens of disease.
And maybe that is the larger lesson. Dementia does not erase the need for safety. It doesn’t mean we should excuse every behavior. Caregivers deserve to feel safe. Other residents deserve to feel safe.
But safety and compassion are not mutually exclusive.
Neither are accountability and understanding.
What dementia demands is that we recognize when someone no longer has the cognitive ability to meet the same behavioral expectations we place on everyone else.
I have written before about the numerous roles this disease keeps asking me to take on: daughter, caregiver, advocate, historian, problem solver, protector.
Yesterday added another one I never expected: standing between my mother and a world that may not always understand what her disease has taken from her.
Every stage of dementia seems to introduce something new. Yesterday taught me that sometimes the greatest danger is not only what the disease does to the person you love.
It is what can happen when the rest of the world forgets that it is a disease.
As Founder and President of HLS Retirement Consulting, she partners with forward-thinking advisors nationwide to design strategy-based solutions that help clients grow, protect, and preserve their retirement income. She also serves as Editor-in-Chief of Heather Schreiber’s Social Security Advisor, a nationally distributed monthly newsletter focused on turning complex Social Security rules into strategy-driven, value-creating solutions that help advisors strengthen relationships, retain clients, and drive growth.
Off the clock, Heather is a hiker, humorist, and proud matriarch of a family of six (plus four furry sidekicks). Having recently joined the ranks of America’s 63 million family caregivers, she shares her own caregiving journey through her writing, offering empathy, perspective, and hard-won lessons to others walking a similar path. Her signature blend of technical expertise, human connection, and a touch of sass makes her a trusted voice for advisors guiding clients through life’s most important financial transitions.
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