You know how the rumor chain works: the first person says to the next, “Santa’s suit is red.” The second person tells the third person, “Santa’s suit seems red,” and so on until the last person reveals that “Santa is a commie.” Most of us have been an unwitting part (or victim) of this communicative practice of human nature.
Now apply the same principle to a bunch of people who have dementia. The first of them dreams up the “fact” that Piedmont Place is about to change its name. The second person embellishes it: Piedmont Place is about to change management companies and will change its name. My mother was a link in that chain. Today she told me that Piedmont Place would soon change ownership and will change its name.
That’s all well and good…but it’s not true.
Information is, of itself, powerful; and to its holder, empowering. If I know something that you don’t know, I have (at least perceived) power over you. But for older folks, it’s not so much about having power as it is about having something new to bring to the table. When you live in a little box, you look for little ways to shake things up…to keep things fresh – whether for better or worse. This is as true of old people as it is of the young.
Dementia, however, seems to add an unfocused layer over the picture. As the responsible party, you might choose to be hands-off. But as the caregiver, you are necessarily hands-on and, therefore, the recipient of these bits of news which you must then chase down to confirm or debunk. As dementia progresses, the chases become more frequent, and we poor caregivers are left scratching (or banging) our heads in frustration. It’s hard for a sentient being to understand the whims of a butterfly.
Having something to contribute to a conversation gives us some degree of control over it and, therefore, some degree of control over our own lives. I remember a couple of years ago when my father made one of his big stinks over the temperature of the coffee being served to him at Wagon Wheel Ranch. The administrator there explained to me that meals are among the last things over which old people feel they still have some control.
Older people cling desperately to control over their own lives – in any form. Mom has experienced the freedom to make her own decisions since Pop’s passing in August. Sometimes her decision-making has been spot on. Often, not. For example, she exited the bathroom recently and announced that she would no longer be washing her hands. “Why?”, I asked. “Because your father isn’t here anymore. There are no more germs.” Well, there’s a kernel of truth to that statement, but the overall thinking is flawed.
Mom told Lisa that a neighboring patient “receives no care” from the staff. The most cursory look reveals that this patient is dressed, fed and properly cared for. But she likes to complain, and Mom doesn’t know better than to accept the complaints as fact. The other patient is merely shaking things up and, perhaps, attempting to control the dialog.
Mom and I have talked several times about the unqualified acceptance of information from other patients; even patients she knows to be “sick” – her reading on their dementia. But Mom’s memory of our conversations fades with time and the exposure to her neighbors does not.
So the cycle continues. And we caregivers are left to imagine our imminent delivery to the funny farm.