Life would be a lot easier if Lewy Body Dementia were just a memory disorder. Unfortunately, it’s that and a whole lot more.
My mother suffers from auditory hallucinations. It is no use explaining to her that the voices she hears can’t possibly be real. They are real to her because she hears them, and she’s lost the ability to distinguish what makes sense from what doesn’t.
The voices are evil. They taunt her while she’s undressing, and when she’s using the bathroom. They threaten gruesome violence to her and my Dad. They threaten to kill me and my children. They tell her in detail how they’ll do these things. I’ve read most of Stephen King’s stories over the years, and the voices would give him a run for his money. And that’s just the stuff she tells me about.
I wonder where the horror comes from, and I imagine how different things would be for her if the voices were kind, positive and fun.
The inability to distinguish hallucination from reality is a problem. Even if she does sometimes grasp that the voices are just in her head, she still thinks her neighbors are bad people. One’s been in jail for years, another’s a drunk whose husband has left her, etc., etc., none of it true. She thinks one neighbor’s son “killed his gay lover in their backyard.” In reality, he’s studying to be a priest. Not that those things are mutually exclusive, but near as I can tell, her neighbors are just people.
Sometimes, she calls the police about the things the voices say. This has consequences. One morning recently, she “heard” a federal agent driving around with a megaphone, calling all law-abiding residents to a meeting at the police station to discuss what to do about people from the Black Lives Matter movement who have been terrorizing the neighborhood. She told my Dad, who said “it isn’t real! Stay home! Don’t go to the police station!”
So she went to the police station. Naturally none of her neighbors was there. Still, she went in and told an officer that “Black Lives Matter people are threatening to teach the neighborhood a lesson.” When the officer later called me to discuss her visit, he said that she then left in a paranoid hurry because “they probably know I’m here.” He followed her home to see that she was all right.
He interviewed neighbors, reviewed previous incident reports, drew some conclusions. Then he went back and filed a report with the Department of Motor Vehicles that resulted in my mother’s driver’s license having to be surrendered. She got a letter from the DMV saying she should send it in voluntarily within 20 days, or the police would take it.
I have no quarrel whatsoever with the outcome, but mixed feelings about how it came about. The letter was a complete surprise to my parents, and to my mind, it would have been more respectful of the officer not to have done it behind their backs. I asked Officer Vigilant how her driving was as he followed her home, and he said “Fine. Quite good, actually,” so his decision was entirely based on her mental state, which is interesting.
She was mostly a bad driver, though. Dementia just meant that in addition to pulling out in front of people and doing 50 mph in the passing lane, she’d forget where she was going or where she’d been, and maybe get lost. It’s a good idea all round to have her off the road.
She did call her attorney, outraged, to see if anything could be done. The attorney called her dementia doctor, who said no, he was not willing to object in any way to the revocation of her license. Patients do get angry with him for that, he told us at her next visit, but stopping driving is the right thing to do. Then he increased her dosage of quetiapine again, which should keep her racist, paranoid hallucinations away a while longer. I hope it works.
Mom’s not being able to drive changes her life less than you might imagine. She uses a grocery delivery service and rarely went out anymore, anyway. For me, it means more frequent visits, which were already happening for various reasons, and driving her and Dad to their doctors’ appointments, which I was mostly doing anyway.
Hopefully, it is also fueling motivation to look into assisted living. That’s becoming a battle, of which more later.