I saw an old friend unexpectedly last week. I saw her across the room, in the bank, both of us finishing up our business at about the same time. We embraced and swapped pleasantries. Sometimes that’s all you do when you see an old friend, but this is someone I really wanted to talk to, and it seemed she really wanted to talk to me. We both have kids growing up and entering new stages of young adulthood… we both have parents with needs who are nearby us (our moms used to both be at the same assisted living home, so we saw one another more frequently.) We paused in the parking lot to talk further. In my mind, I ran through all that I was wondering about: How was her husband? Her children (I pictured each of them and their approximate age/stage), her parents… WAIT…
WAIT… her parents… her mother used to be with my mother at the same assisted living facility. But then she moved because her needs had increased. That was a while ago. Was she still living? Had I seen any announcement on Facebook (the main way I would keep up with my friend’s life)? Had a mutual friend mentioned anything? As my mind raced, she asked me kind question after question about my children and about my mother. I was answering her questions, but my mind was distracted in panic mode: I wanted to ask about her mother, but I was afraid that her mother had passed away and I had forgotten. I know someone’s mother died a few months ago. Was it hers? If I ask how her dad is doing, would that give me a clue? If I ask how her mom is doing but her mom has died, then I would feel like a jerk or like an imbecile… pause… or like a person who can’t remember important things.
I’m grateful that this is a warm, kind, wonderful friend who, although I don’t see her often, I love and trust. It took me too long, but I eventually confessed. “I want to ask about your mom, but I can’t remember if she is still with us?” Argh. I hated it. I hated admitting it. I felt like a jerk. I felt like an imbecile. My friend… she didn’t hesitate, her mom is still living but with profound limitations. She shared what that is like for her, for others. Her grace at my “not knowing” was so great that my “not knowing” seemed to be a non-issue for her. That helped. That helped me A LOT.
I don’t think I have symptoms yet. Or if I do, I certainly don’t think they are great. I remember my first visit to UCSF when the research assistant responded to my panicked stories about my mental state with questions like: How much stress are you under? How much sleep do you get? How high is your caffeine intake? Then they assured me that my forgetfulness was well within the non-dementia range.
But no matter what annual tests may show, no matter what achievements I may gain, I worry every time I forget a name. I worry every time I miss a meeting, no matter how informal the plan was. I panic every time I can’t think of a word in the midst of conversation. Even if nothing is wrong—nothing is wrong yet—I am haunted by frequent worry that there are indicators (especially indicators that others see) that I have dementia.
My friend at the bank last week was helpful. I was so embarrassed to admit that I didn’t know if her mother was still alive. But she made it ok for me to ask. She didn’t pause. She didn’t miss a beat. She shared her own deep feelings, one she might not share with everyone in every casual conversation.
The example set for me when dementia began with many others was to “fake it.” I think everyone I’ve known who has had to deal with their own journey into the fog and the heavy blanket of dementia has chosen the path of pretending/insisting that nothing was wrong. That’s what felt “natural” in my conversation last week. I wanted to fake it. I wanted to pretend that I knew that my friend’s mother was alive and adjusted to her new home (or that she had passed away and that I remembered details of her passing.) I didn’t want to admit my uncertainty. But, there is nothing more freeing than honesty. My friend made it possible for me to be honest, “I, um, want to ask about YOUR mom, but I can’t remember… is she still with us?” Honesty… If I can practice it fully now, then maybe it will be easier for me to be me when the changes come someday.
It was so good to reconnect with an old friend. What was even better was to reconnect with an old friend and by the end of the conversation not to be hiding anything (or having any doubts in my mind that I wasn’t sharing with her.) I had to leave before long because I had another appointment. But I keep replaying that short interaction in my thoughts: the warmth of an old friendship, the sacred space that SHE created by making it safe for me to ask a question, to admit that I didn’t remember something. I encourage you, if you are reading this, make it safe for those around you to be honest, to ask any question they are wondering about. Don’t judge, don’t joke. If someone asks something you don’t expect, be gentle, be gracious. If you make it safe for them to be fully themselves, future conversations will go well too. But if we push people to hide and to pretend and to “fake it,” then I fear that we further alienate many who are already afraid, already feeling alone.
Tonight I’m thankful for a good friend. And I hopeful that I’m being a good friend to others. We’re all in this together.