Dementia is a roommate that moves in so slowly, box by tiny box, that you barely recognize the changes in your home and mind. It adds a few items to a drawer in the guest bathroom and hides something else under the couch. A few months later, dementia puts something in the cabinet no one ever looks inside in the garage. It’s always adding to the home and the brain in such small increments that it can be hard to detect dementia’s presence until it clutters and gunks up numerous “secret hiding places.”

I have no idea when the confusion, loss of initiative, and memory clouds began moving in on my mother. This new roommate never asked permission, signed a contract, or announced its intention to take over my mother’s mind. I only have my observations and recollections of the changes in her mood and behavior I’ve witnessed. Comparing and contrasting these changes over time led me to heightened concern for her wellbeing, and I encourage you to lead with your intuition if you notice seemingly random differences in a loved one.

My mother Janice had been a career gifted education and elementary school teacher. She grew up in a stable household with two parents in a small country town, attended the local college, and completed her Masters degree.

She was extroverted and enjoyed spending time with friends; she disliked keeping house or cooking, but kept up with those tasks all the same. She experienced divorce in her early 50s, and adjusted to managing her finances and household begrudgingly.

Transitioning to the new technological world of email, the internet, and cell phones never quite happened. After teaching for 30 and 1/2 years, my mother was eager to retire and begin a life of quiet and calm.

Over the last 15 years, she and I had developed a routine of speaking at least once a week and even more frequently after I had children. Several times a year she’d swallow her anxiety about driving in large cities and drive to visit my family in Baltimore and my older brother in Washington, D.C. Using a GPS made her more nervous when driving, so she’d rely on her past knowledge of the route and the city in order to reach me. She’d fly to Cape Town, Boston, or Chicago - wherever I was living at the time - traversing the airports with ease. 

We differed in that she was more easy going and less of an organized planner than I. She’d stay with me for a few weeks at a time, joking that as long as I cooked, she’d clean the kitchen and help with laundry.

But at some point, her level of comfort traveling alone decreased and shifted. Instead of putting a handful of well chosen outfits that could be mixed-or-matched in a suitcase and getting on the road, she began to fret about what to bring. She’d make lists and sticky notes of items to remember then arrive having forgotten one or two key items. On the phone she’d ask me repeatedly about our plans and what she needed to bring. We’d confirm the dates. Before each trip she began to express trepidation about her driving route whether it was to the airport or into the city. Sometimes she’d worry so much that her stomach would become upset. Arriving emotionally exhausted, traveling seemed less and less fun.

My brother and I would chat about our mother’s quirks. We’d joke that she’d lived in and around D.C. and Baltimore her entire life. She’d driven the hour and a half to the closest major airport countless times. We grew to expect her complaints upon arrival. Why was she starting to speak as if visiting us was stressful?

We didn’t recognize that dementia, her new roommate, had slowly been moving into her home and mind. Bit by bit it was causing her executive planning functions to be disrupted. It began creating excess chatter in her brain when her mind was supposed to be focused on driving. Dementia was slowly turning up the knob on her anxiety in such a smooth way that we had no awareness of how much her anxiety had increased. Neither she nor I had any idea this invisible visitor was beginning to make itself comfortable and that it planned to eventually impact multiple areas of our lives.

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