Deena’s dementia resulted in behaviors and emotions that had never been a part of her personality. She became increasing anxious and agitated. She was more needy and clingy. I knew she wasn’t being difficult for the sake of being difficult. Personality change in a person with dementia is a much more common occurrence than people understand. I was certainly among the uninitiated, so consequently it took me a while to associate the changes in her personality with the disease.
For example, early in our journey I must have said something that she misunderstood, because she went from calm to enraged in a heartbeat. It happened so fast it made my head spin. And it was so unlike her that I was completely caught off guard and responded in all the wrong ways, inadvertently throwing gas on a raging fire. It was hard not to react with the same heat and intensity, which of course I came to learn was an exercise in futility.
At one point, Deena talked about how difficult she had been after a particularly grueling episode. That conversation really helped me to understand that the blow up was really the disease at work. When we talked, she had no recall of the things she had said to me, no idea how angry she had been. I learned that I couldn’t take her words so personally. That as painful as it was, it wasn’t intentional. She wasn’t being deliberately cruel.
In time I came to understand that Deena’s personality changes were a symptom of her disease, in the same way that pain might be a cancer patient’s symptom or that shortness of breath is a symptom that a person diagnosed with Congestive Heart Failure might experience. Deena’s symptoms weren’t necessarily physical, so they were harder to recognize and respond to appropriately.
I mean you wouldn’t react with anger or frustration if someone was in pain or couldn’t breathe. You’d be sympathetic, understanding, comforting. When I realized that Deena’s agitation and anger was the Alzheimer’s equivalent of pain and shortness of breath, I was able to focus on Deena and not the symptom. That let me respond more from a place of love and understanding, not reacting to the anger with anger and frustration.
So, I learned to just keep repeating my new mantra, “It’s not Deena. It’s The Disease. It’s not Deena. It’s The Disease.” It didn’t solve the problem, nor necessarily make it easy, but it did make it more understandable and help me shape a more appropriate response to the given situation.