How do you know when you’re home?
That question is often on my mind, especially when a member of our online support group The Purple Sherpa Basecamp shares that their loved one wants to go home because they don’t recognize they’re living in the place that’s been home for them, sometimes for many years.
Here’s what I recently wrote on my personal blog about this situation:
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.
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.
When I was caring for my dad, I worked to surround him with things that once had meaning for him. Sometimes the meaning lingered and sometimes not.
My dad loved the Georgia Tech Yellow Jackets, so I stocked the kitchen with cups and mugs that displayed the Yellow Jacket logo. I bought him Yellow Jacket t-shirts and throw pillows. Sometimes our home looked like a tailgate party gone awry with all the Georgia Tech merchandise, but I found that it helped to orient my dad to something that mattered for him.
Even though my dad seemed to forget about my mom (who had died about 8 years before he was diagnosed with Alzheimer’s), I could tell that he recognized her photo, so I kept plenty around. Once, late into dementia, he even pointed to a wedding photo and said, “She was my person.” He couldn’t tell me anything about her or their marriage with words, but the look in his eyes told me that seeing the photos was an anchor for something important that he knew on a level deeper than words.
I tried lots of other things to help my dad recognize that he was safe, among people who knew him and loved him, where he could be comfortable: music, art, knick-knacks, even toys from my own childhood that he’d used during our playtime.
Like anything else with dementia, sometimes these cues connected for him, and sometimes they didn’t. But I think the message landed: he was home.
How can you bring elements that represent safety, security, comfort, and history into your loved one’s space? What do you think they’d say if asked to answer the question, what is home for you? Let that guide you.