Lewy Body Dementia: A Mother/Daughter Journey and What I Wish I Knew

The first signs seemed so small that they were easy to dismiss. A forgotten word here, a misplaced item there. My mom, a sharp and meticulous woman who spent decades as a medical malpractice attorney, started stumbling over details she used to command effortlessly. I remember referencing an internet checklist with my siblings, the kind that compares “normal aging” to “possible Alzheimer’s”. We went through every line and decided it was all just age-related. How could it be anything else?

A year later, everything changed.

Dealing with Dad’s Stroke

It was November 2010 when my dad had a massive stroke. I’ll never forget the call from Mom that morning. “Your father can’t get out of bed, and he can’t talk,” she said, her voice oddly calm. When I told her it sounded like a stroke and she should call 911, she asked, “Should I call 911?” That was so strange. She hung up and did call, but when I got there she was almost paralyzed, unable to figure out what to do. It was the first clear sign that something was very wrong.

She was strangely passive when visiting dad in the hospital. The woman who used to take meticulous notes at doctor’s appointments suddenly asked no questions and wrote nothing down. I brushed it off at first, maybe she was just overwhelmed. But in the weeks that followed, her behavior grew more unrecognizable.

More Signs and Seeking Help

When Dad moved to a rehab center, she refused to visit. “It’s too hard,” she said. We assumed she was in denial and maybe depressed. But soon it became clear she wasn’t just unwilling, she was unable. She was terrified of him in a way that didn’t make sense, as if she no longer understood what had happened.

My mom once had the most beautiful handwriting. Immaculate script with careful attention placed on every pen stroke. I started finding chicken scratch notes with the names of Dad’s caregivers that she obviously couldn’t remember. She had always prided herself on her independence but started seeming lost in her own home, even forgetting how to open the sliding glass door.

I suggested she see a therapist, partly to help her process the trauma, partly because I needed someone else to tell me what was happening. After a few sessions, the psychiatrist called me. “I think this is more than grief,” she said. “You should take her to the Penn Memory Center.”

That’s where we first heard the words Lewy Body Dementia.

Testing and Diagnosis

It took a few months to get an appointment and she was so nervous about the testing. Mom was an exceptional student who took pride in acing nearly every test she took. Finally the day came, and I remember her saying afterward, “I know I failed.” She was devastated.

The doctors asked me if she’d been seeing things that weren’t there. I hesitated before answering, but recalled that she had indeed mentioned children and dogs outside the window that didn’t exist. They told me hallucinations like that are a hallmark of Lewy Body Dementia (LBD).

Before her memory diagnosis, another doctor had told her she had Parkinson’s disease. She actually felt relieved, happy it wasn’t a brain tumor like her sister had. But Parkinson’s symptoms can overlap with LBD - tremors, slowed movement, rigidity. The truth was, she had both.

Leaving Home

Her decline was steady. We hired aides to help her at home, first part-time, then around the clock. When Dad’s health worsened, we moved him into a skilled nursing care facility. Within months, Mom joined him after experiencing several falls.

I remember worrying that she would hate the move, but she didn’t resist as much as I expected. We set up her room with her own furniture and linens to make it familiar. I think she didn’t quite understand it was permanent.

As is sometimes the case with LBD, Mom never completely forgot us. Even in her final year, she knew who I was. That awareness coupled with her confusion was heartbreaking.

And yet, in the last 18 months of her life, something softened. She became gentle and even joyful. She’d smile, laugh, and hum along to hymns during music sessions. The woman who had once been all intellect and precision now radiated warmth and sweetness. She seemed content, which was truly a gift.

Lessons Looking Back

Looking back, there are so many things I wish we’d known sooner. For example, the summer before everything started, we were on a family trip and she had intense night terrors, screaming in her sleep several nights in a row with no memory of it the next day. I learned later that REM sleep disorder is often an early sign of LBD. We just didn’t know.

Coordinating her care became the hardest part of all. When you’re caring for two parents at once, one gap in coverage means you’re filling in yourself. It was draining on many levels.

That’s why I think something like Simon could make such a difference for families like ours. If there had been a simple way to log daily updates - what she ate, when she took her medications, when supplies were running low - that would have given my brother and me such peace of mind. We could have spent less time scrambling and more time just being with her. We did the best we could with what we knew.

But I often think about those early signs, the subtle changes in her handwriting, her sleep, her fear. If sharing this story helps another family recognize them sooner, maybe that’s one small way Mom’s memory could help others.

Guest Authored by Lisa, Realtor, Philadelphia, PA

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