I woke up breathless, heart pounding, with tears on my cheeks.
I’d dreamed that I was saying goodbye to my home, moving to a new house. It felt like leaving everything that was certain. Everything that was safe. Everything I knew.
Everything that makes home, home.
I was probably seven when I had this dream.
* * * * *
People who are living with dementia often beg to go home.
It’s painful to hear that request made from an assisted living facility or a nursing home.
It’s worse when it’s made in either locale after a visit home. (In the before times, when families could visit facilities and residents could leave, all without fear of Covid.)
It’s agonizing when someone you love begs to go home while sitting in the house they’ve lived in for 10, 30, 50 years.
What does home mean in this context?
What does home represent?
The cognitive tangle makes it difficult to know for sure. We can’t just ask and expect to learn the real answer.
* * * * *
Here’s what I think: I think home means familiarity, security, safety.
It means knowing how to navigate from one room to the other, being able to pop into the kitchen and whip up dinner or a cup of coffee.
It means knowing how things work, from the light switches to the doorknobs, and knowing where to find what you need—a sweater, a pen, your own history.
For some people, it’s about the sense of comfort that a beloved spouse or parent or sibling brings. Or brought.
Perhaps for others, it’s solitude, being independent. Getting to decide what to do and when, without interference from anyone else, no matter how well-intended their input might be.
In some instances, home may mean a physical place at a particular point in time, but I suspect that even when that’s true, it still isn’t about the house; instead, it’s about the feelings that the house represents.
Of course, knowing this doesn’t make the plea any less heartrending.
* * * * *
By the time my parents did sell my childhood home and move to another house, I’d lived in six dorm rooms and three apartments. I was aware that, although I spoke of home as a particular place, I really meant much more than physical location.
Each time I moved, I brought some of the things that were dear to me, and I built home again and again. And even as I created my own homes over the years, I continued to think of my parents’ house, even the new one, as home also.
There’s a flexibility implicit in these new associations. Feeling at home in a new space takes time. It takes effort, both in setting up things in the way we like them and also spending time getting accustomed to the new space.
When I placed the sculpture of a child and a dog that had belonged to my grandmother, I brought in memories of our playtime together when I was a child. Seeing the figurine reminded me of visiting her and my grandfather, and I felt the warm fuzzies of familiarity.
Hanging photos of my college friends reminded me of our long conversations over the years. When a photo would catch my eyes, I’d remember that my friend Laura or Joanne or Julie were just a phone call away, and I’d feel the warmth of their presence.
I intentionally created each new home as a place of comfort, of security, of familiarity.
And here’s what I see, looking back: I was able to do that because I had the cognitive flexibility to know what would bring those feelings. My brain recognized certain items as placeholders for feelings that had existed in other homes over the years.
I didn’t have to wonder whether I was home because I recognized the hallmarks that had meant home over the years. I adapted to a new space because I carried memories from the old.
* * * * *
What about people who can’t carry those memories?
While caring for my dad through his years living with Alzheimer’s and vascular dementia, I learned that cognitive changes made it less and less possible for him to adapt to anything new.
My dad, an engineer in his first career and one of the first lawyers in Georgia to use a computer in a courtroom, was completely unable to use a new cellphone even though it was almost identical to the old one he’d mastered. When I moved coffee cups from one cabinet to another, it was as if they had simply ceased to exist because he wouldn’t look anywhere except in the old spot. He was livid upon discovering (repeatedly) that they’d been moved.
His brain simply couldn’t adapt to these or other changes.
I told him the new cellphone was broken, and I put the coffee cups back where they belonged.
I learned that his brain was losing the flexibility to adapt to any kind of change, and so I had to adapt instead.
And that flexibility is what my dad, and others who are living with dementia, are missing when they realize or believe that they’re no longer at home and they want to go back there.
When surroundings are different, or when cognitive decline makes them seem different, the brain can’t pick up on cues that this new (or seemingly new) place is still safe, still secure, still containing familiar items. The brain simply can’t adapt to a new living circumstance, whether that’s physical location or how the days pass.
The person who’s living with dementia becomes unmoored from current-day home and wants to return to feeling that familiarity and security. And when the brain is unable to find that feeling, the person living with dementia begs to go home.
* * * * *
Reflecting on all of this prompts me to wonder, how do we know when we’re home?
What is it that signals to our brains, you’re safe here?
How do we build the familiarity that distinguishes the place where I’m living from home?
For me, it’s partly the things I’ve collected: the familiar knick-knacks, the photos, the Tervis tumbler with a Vanderbilt seal that’s been my favorite drinking glass since my senior year of college way back in 1990. It’s also the scents I enjoy — the vanilla cupcake candles that I burned when I lived in Wyoming for the summer in 2010, Obsession cologne that reminds me of my mom, Puffs tissues that smell just like my grandmother’s house. It’s tastes that awaken memories: the Thanksgiving dressing that my grandmother, mom and I adored while everyone else who sampled it swore it was just like chewing a bottle of sage. The roasted pecans my dad munched on every winter. And it’s sounds that hold meaning: the certain whirring chirp of grasshoppers in the summer, The Nutcracker Suite at Christmas.
It’s landing in a place that’s physically safe, a place where I’m willing and able to build the bridge between my past and my present.
I worked to build that bridge for my dad, with varying levels of success.
His pain crushed me when I failed, but when I succeeded, I could see him relax, feel comfortable, be at his cognitive best.
And so, if I ever become cognitively impaired, I hope I’ll be with someone I trust, someone who knows me and my history.
I’ll want them to point out the things I’ve loved through my life and the photos of the people I’ve loved, to remind me of my life stories, to make the sage dressing and play the music that moves me.
In doing so, they’ll show me that even if I don’t recognize my physical surroundings, I am safe.
I am cared for.
I am home.