You tell the person you are feeling sick, you’re really exhausted, or haven’t slept, and it feels like you are talking to a wall. Does it seem like your loved one with dementia has no sympathy for what you are going through as their caregiver? They don't seem to care.
“Mom, I’m trying to get your breakfast as fast as possible. I didn’t sleep, I was up with you all night, and I’m tired. I know you are hungry. You’ve told me that 10 times in the last 15 minutes. Don’t be so impatient! I’m doing my best!”
Meanwhile, mom sitting on the sofa, thinks, "I'm so hungry, my stomach is growling. She’s hollering at me. She being so mean? Where is my food?”
We are all born with the ability to empathize with each other. To understand the other person's experience, feelings, or viewpoint. Some people are more adept at this than others. However, a person with progressing dementia begins to lose the ability to empathize with how others feel. They are also unaware of how their words or actions affect another person. Just like losing their memory which is not within their control, losing empathy is the same.
Sam had Lewy Bodies dementia, and he was still able to communicate. We discussed his symptoms and how he perceived what was happening around him. One day we talked about how he lost his words when some friends recently visited. I asked him how this made him feel, expecting him to say embarrassed or sad.
However, he couldn’t seem to find feelings. He would explain what he did or should do. When I asked him what he was feeling at this moment talking to me, he said, "Well, we talk about things." Again, he couldn't use introspection; he didn’t understand or recognize what was going on inside himself. I then realized why people with dementia are unable to recognize feelings in others. They can’t recognize their own, so how can they?
To empathize with another person's feelings, we must have access to recognizing our own emotions and experiences and relate them to the other person’s.
My youngest son had very high-functioning Asperger's. He was very normal except for social awkwardness, and he couldn't identify feelings, his or those of others. He couldn’t read emotions. Something very similar happens with dementia, and this lack of empathy often begins very early, and it seems the person has become very selfish. Only cares about themselves.
Eventually, my son intellectually learned to read people's feelings. He became adept at interpreting tone of voice or visual body positioning. Thus, he could sympathize with others and understand the emotions they were demonstrating. But this was intellectual, and he never did develop genuine empathy.
Your loved one may be unable to identify his feelings, but that doesn't mean he doesn't experience them. The difference is the need for insight capabilities. They feel, yet they don't know what that feeling is, why they are feeling it or how to control it. Just so you know – the same goes for understanding yours.
This situation would be one of the most difficult for family members, especially if their loved one was always been a caring, involved person. It's essential to understand this aspect of dementia symptoms and to not have unrealistic expectations that your loved one should empathize with your feelings.
Remember, they didn’t choose to lose empathy. This wasn’t a choice.