It’s easy for me to bury my feelings in a fictional world. And fiction needs the color of our emotions to flesh out the line drawings of our imaginations. But today I want to withdraw for a moment from the world I am creating here on Grand Canyon Avenue, and speak about the world I am encountering. Sometimes I create in order not to encounter, but this never lasts long.
I am here in the spring of northern Arizona, sharing a very small house with a friend, a former partner, who is experiencing the grief of growing dementia. We are, all her people, experiencing that grief but of course her experience comes from the inside while we are only helpless observers. Helpless not in the extent to which we can cook and care for her, remind her to take her pills, to brush her teeth and take a shower. But helpless to lessen her suffering when she finds she can no longer remember how to use her phone, her lifeline to others. “Like this,” I say, and tap an icon. She shakes her head and knows that when she cannot do this anymore, when the tapping becomes yet another puzzle to decipher, the world will no longer open at her fingertips and she will be, in a way she never imagined, utterly lost.
She is sheltering here as long as the sheltering goes on, because she can’t be alone anymore and the person who shared her house lost their job and moved away. So she is sheltering here, in fact, as long as the sheltering goes on and longer. She is here with me until we can arrange help for her in her home in a different part of the state. A “companion” is what we’re looking for, and my friend says, reasonably, “How can someone I don’t even know be my companion?” This word ushers in a different stage of the illness and we both know it.
As long as I see my role here to be positive and cheerful, I am denying the great scope of sadness we both feel. This house was built in 1898 and has a calm and peaceful feeling to it and draws in the light through every window at different times of day, but still, there are few doors to close and my friend’s presence on the sofa in the center of the house is undeniably heavy. She is stricken at random times throughout the day and cycles down into some darkness I can see and feel. How to help? How to honor the suffering and stay close to her? I am a Buddhist practitioner and this, I can tell you, is the heart of the practice: To accompany someone and their suffering. Not to change it, but to witness it and share their heart. I love my friend. Her diminishing is a shock and it demands that I keep current with who she is right now, and moments later, who she is now. Her ability waxes and wanes throughout the day and there is no rhythm to it that I can decipher. I don’t know from one minute to the next what I will be called upon to respond to. How to turn on the shower? To remind her of the name of her son? Or the mysterious workings of her phone. Uncertainty surrounds her in such a profound way. My wish is to make things more certain, but the reality is that in order to be with her, really with her, which is her need and desire, I must join her in her experience of uncertainty and the painful impermanence of all things. We’re essentially looking at death together, through the lens of dementia, and it’s frightening. And heartbreaking. And to wake up each day in this little house and know there can be no lifting of the feelings of dread and loneliness, well, we are suffering. I wanted to tell you that, just that. There is suffering here. Let’s be honest.