I often talk to loved ones of individuals with dementia. They tell me that one of their biggest fears is coping with the moment when their loved one no longer knows who they are.
But it’s seldom a single moment in time.
Typically, it goes something like this:
They blank on your name and need a reminder. They think you are someone else. They know your name. They don’t know who you are but then suddenly they do. They know everything about you but call you by a different name. They stare at you blankly and ask who you are. They know your name. They don’t know your name.
Maybe all of that happens over a day, a week, or a year. Dementia isn’t something that pulls off the band-aid quickly.
I was spending time with a group last week. After more than an hour of visiting with her, a friend living with dementia took a look at the woman next to him and retreated backward.
In a panic, he asked, “Now who are you?”
When he searched for our names and our relationships to him, they just weren’t there. Why did they disappear at this particular moment? We don’t always know. But they came back in about two minutes.
And does it make sense that they remember your brother (who comes around once a year–either for Thanksgiving or Christmas but never both) but they don’t remember you (who sacrifices much of your time, effort, and finances in the name of their care)? Nope. But sometimes life doesn’t make sense and getting mad at it doesn’t change anything.
You’re allowed to be mad, though. It’s maddening.
Dementia’s progress isn’t linear nor is it predictable. People living with dementia don’t start forgetting people in the order of “not significant in my life” to “has always been my favorite although I’d never admit it.” People with dementia don’t forget loved ones because they are mad at them. REPEAT THAT TO YOURSELF.
People with dementia don’t forget loved ones because they are mad at them.
And it’s not that people exit the mind in a moment and never return. You can be forgotten and then remembered and then forgotten and remembered.
In addition, knowing when you’ve been “forgotten” isn’t always so clear-cut.
People have told me that Mom remembers their name but not that they are related. Or that Dad recognizes them as his son but is never sure which son. Or, wait, maybe he’s a nephew.
Several people with dementia have told me that they seem to remember people with their hearts even though they may not remember them with their heads. Sometimes they feel a sense of familiarity or even love when they don’t know who someone is. To be remembered by someone’s heart doesn’t sound all bad, does it?
But I am not Suzy Sunshine. You probably know that by now.
How can someone who gave you your name forget your name? I won’t try to talk you out of being sad.
Like many things with dementia, it’s not one moment. It’s a lot of moments.