4. Don’t assume they can’t understand you because they are silent.

silenceThis is the fourth of my list of things to never say to a person diagnosed with dementia.

Early on, before we had a diagnosis but recognized something was wrong, I would try to over-explain things. This would only make my mom more talkative as she tried to ask questions but usually the conversation would get jumbled up and veer off in an unusual direction.

My dad on the other hand got silent. Whether it was because he didn’t want to talk, wasn’t sure what to say, or had no interest, I will never know. What I did find was that when my mom would start questioning him, he would just go silent. We initially thought our dad was depressed, and most likely he was, but he was also in the early stages of Alzheimer’s when we first noticed his silence.

Later, my dad got into the habit of saying “It’s a nothing-burger” when I raised something he didn’t want to deal with and to my mom would just reply “I don’t know” to defuse her rapidly escalating anxiety.

What I would realize after a few months of pure frustration on my part was that my dad did understand, did know the answer, but just didn’t want to discuss the matter.

I carried this knowledge with me through my mom’s move into a memory care community. There were quite a few silent residents who would respond with a smile at a simple “Hello” or would immediately come join you when invited to sit outside on a park bench. Even through my mom could talk, she started to talk less. It felt like she was feeling less sure of the words coming out of her mouth. Some days, she would be up for a lively conversation, and others, she would just wait until I shared another story.

Some much of what you learn is to see and respond to the person in front of you today. What my mom liked last year, or even yesterday, may not be something she cares for today. I was never one to find silence uncomfortable, so sitting outside with mom and just enjoying our surroundings became one of my treasured activities. Some days, I can still imagine she is right by my side when I close my eyes. Treasured.