Deciding which person with dementia to work with seems a lot like dating. I go in hoping for a good vibe and if things go well, I’ll eventually see them without their clothes on.
Two weeks ago I got a call through a referral. I live in a rural area and most of my work comes by word of mouth. Sylvia’s voice was childlike and tentative. “I was recently diagnosed with dementia and I’m starting to tell people.”
I had been expecting her call, but it still surprised me. Most of the people I’ve worked with have been too progressed in their disease to make a telephone call to a stranger. I did have one client in Manhattan who used to call BlackRock and tell the receptionist he would like to withdraw all of his money immediately and he’d be at the office in twenty minutes to pick it up. One and a half million dollars. And then he’d get in a cab, walk into the lobby past a robust security detail and try to get on the elevator, me trailing along apologizing to everyone. “He has a brain injury. Please don’t call the police. We’ll leave!”
Sylvia said she had a lot of anxiety. “My doctor says I have to find people to help me, so I’m starting with you. What’s your name again? I’m sorry.”
“It’s Beth. Don’t be sorry. Do you want to write it down on a piece of paper?”
“No, I have it right here in front of me.”
I asked her a few simple and direct questions. Where she lived, what she liked to do, what she’d done for work. She interrupted herself to apologize and ask for my name and phone number.
“Don’t worry,” I said, telling her. “I know the deal.”
She laughed. A good sign.
It’s been a real learning curve as an untrained, unlicensed, rogue dementia caregiver to figure out how to talk to people. Everyone is different, of course, but bonding shortcuts like over-identifying, especially when it comes to memory problems don’t play so well. I’ll never forget the time I told a client I was “always” forgetting people’s names too. She paused before locking into my eyes, and in her retired literature professor tone said, But it’s actually quite different, isn't it? The difference between you and me. You sitting there in your sneakers, fresh off the city streets, and me here in my dressing gown at 4:30 in the afternoon as the shadows get long.
My face flushed red. It was actually closer to ten in the morning, but I didn’t dare correct her. I learned two lessons at once. Turns out an imperious dressing down is a wonderful teaching tool!
Sylvia and I wrapped up our phone call, setting up a date and time to meet in person. Over the next five days before our meeting, she called or texted every day to either confirm the appointment or ask if we had set something up. It’s an interesting paradox. When I see her name pop up on my phone screen, knowing she has forgotten what we’d discussed, I think, well she has my name and number and knows how to reach me, so she’s doing pretty well. I’m not accustomed to this kind of competence. And unlike my other current clients, she lives by herself. She also does her own grocery shopping and is still driving her car. I decide I’ll have her take me for a ride.
- Beth
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Oh Lordy. This is good, good, good work all the way around: the writing, the vocation choices, that you’re sharing this on a regular platform. The pov is so different from what I hear on a regular basis from friends who have parents or older sibs with dementia. There’s sanity and acceptance in your voice. Thank you, Beth.
A dressing down in a dressing gown. Who could ask for more?