When I think about living with advanced dementia, I have always assumed it will be a time of not knowing the answers to questions. What day is it? What year is it? What did you have for breakfast? “I can’t remember.”
Long ago, I learned not to ask mom questions like this because it only frustrates her and makes her seem sad and confused. I try to talk about the present or the deep past. I try to ask her opinions or her feelings not facts that need to be recalled.
I have definitely equated dementia with “not knowing the answers.” Recently, playing a trivia game with co-workers made me chuckle and realize how many questions (especially pop culture) that I already cannot answer.
But something about the trivia game got me thinking more deeply and brought a new insight: I think the worst part of dementia will not be “not knowing the answers” but rather “not even knowing the questions to ask.”
I realize when I’m sitting on the porch talking with mom, the problem isn’t that she doesn’t know what month it is or doesn’t recall what was served for lunch. Her reality is so blurry that she doesn’t know where she is, how she got her, how long she’s been here, what major events have unfolded (or not.) She sometimes seems so overwhelmed by uncertainty and confusion that she doesn’t even know how to begin phrasing a question.
Last week, as we were visiting on the porch, though, she opened a tiny window into what her reality is like. “How does it work?” she asked.
We were looking out across the lawn, the road, and into a large field and new subdivision being constructed. “How does it work?” she asked. “How does what work?” I replied, thinking perhaps she had a question about the new housing development.
“This,” she answered without gesturing or pointing or explaining herself in any way.
I had no idea what she was asking. I’m not altogether sure that she knew. At some point her focus settled upon the assisted living facility that she now calls home. “How does this work?” seemed to be a question about whether she pays daily, weekly, monthly, etc? Does she need to buy groceries? Does she have her own room? I think that was what she was asking.
And I realized… by the time I helped answer the question, I’m not sure she even remembered what the question was or why it was being asked.
It was a sobering realization to know that someday I won’t even know what the question is or when to ask it or why it should be asked.
But then I look at the world we live in and realize most of us don’t know how to ask the right questions, the questions that matter. If we did, there would be not be so many inequities, so much destruction, so much suffering.
I start to mourn, to feel sad and hopeless not only for myself but also for humanity. And then I pause. I do not yet have dementia. I will, but I don’t yet. So why bask in a hopeless, helpless state? Why not use the time I have to contribute toward health and wholeness, not only for myself but for all of humanity, for all of Creation? Everyone’s days are numbered. We are called upon to live them well, to ask hard questions, and then to take action as we learn the answers to the most important questions.
Remind me of this someday, when I don’t know what questions to ask or what the answers are. Remind me that we are all called to do what we can to share light where there is darkness, to bring hope where there is injustice, to change systems and open doors. What I will be able to do 10 or 20 years from now is likely to be quite different than today, but as long as I have breath, I believe I will have purpose. I won’t be drafting petitions or preaching sermons in years to come, but even if it is as simple as loving God and loving my neighbor, remind me to do so, please. And I hope you’ll continue asking questions that need to be asked and discovering unexpected and exciting answers.