I took Mom to see her physician last week for an annual physical. He and I didn’t seem to hit it off a few years ago when I started bringing her. Maybe because he thought I was butting in to her life when it wasn’t necessary because he thought, and seems to still think to some extent, that she is not as impaired as I think she is. But he and I seem to have gotten on the same page as far as wanting what’s best for my mother.
He asked her a whole bunch of questions, and then talked about her diagnosis of Lewy Body Dementia (LBD). He said that the progression and death from LBD is not a nice one. Mom’s hard of hearing, and I hoped that she didn’t hear his comment. It seemed like she didn’t because there was no reaction, but I heard him. He then told her to live as full of a life as possible and to visit all the people she wants to see, because eventually it’ll be meaningless since she won’t know who they are. Then he said that he thought she was doing remarkably well with her memory, and that all we can do is hope that her condition will just smolder slowly in the background.
Later that evening, I found her reading the LBD pamphlet that her Neurologist’s office gave us a few months ago, and only after we requested it. She gave it to me and said I should also read it. I think she heard what the doctor said.
What her physician doesn’t know or realize is that my mother’s condition has significantly deteriorated during the last 4-6 months. She needs help paying her bills, writing checks, balancing her check book, keeping track of her appointments, grocery shopping, and figuring out where we are when we’re a mile from home. The phrase “I can’t remember” is something she says several times a day now. Sure, she can still answer questions when the doctor asks them, but he has no idea if the answer is wishful thinking, or an answer that is incorrect because she just doesn’t remember the correct and real answer, or if it is the right answer. But because she answers the questions he asks, he automatically assumes that she knows what she’s talking about.
I don’t have any burning expectations from him that aren’t being met, so I can live with the fact that he thinks he has a handle on her overall medical condition. I decided that it wasn’t going to change anything he does for her by trying to convince him that he is out of touch with her progression. We’ll seek him out when needed, just as we will when we need something from any other provider or person.
One of the hallmarks of LBD is the presence of hallucinations. My mother has been telling me about these for a few years now. She sees my father and me mostly, but one day recently, she told me she saw two cats and a penguin in her bedroom. They were all getting along, so we both laughed about it. I hope her hallucinations never cause her fear and anxiety. If and when they become a problem, we will look for help then. Meanwhile, I’ll continue to listen intently to her stories about her imaginary visitors.