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Caregiver’s Corner: Stillness in the Storm

The Dementia Newsletter is a personal endeavor for me, and I like to share my personal journey with my mother’s dementia—to the extent that maintaining her privacy will allow—with my readers because I want you to know that you’re not in this alone and that even the “experts” struggle.

I don’t feel like much of an expert lately. My mom was hospitalized twice this weekend, once after a fall and then again with pneumonia. She was largely unresponsive for about 24 hours. I wanted to do something, help in some way, fix the situation… That’s what an expert would know how to do, right?

The longer I help my mom through her journey, the more I think that expertise simply lets us judge when it is best to sit still and simply be present. When my mom started crying yesterday, she couldn’t articulate why. I asked the usual questions—bathroom, food, water? Are you cold? Are you too warm? And when I ran out of questions to ask, all I could do was sit and hold her hand and be still.

In that spirit, I love the story below. What do we do when there is real sorrow? How do we cope, and help someone else to cope, when the problem can’t be articulated. Sometimes, you just have to “eat the tears” like our clown friend in this story:

Stillness is not happy or sad, just present. Can we sit without judgments about what should and shouldn’t be happening? Probably not. Can we avoid judging ourselves for getting caught back up in our judgments? Probably not that either. But we can get closer, closer to showing up and bringing our full selves to the situation, accepting what is.

Finally, I love this quote from Isabel Allende.

My mother has been my true friend across time, distance, and silence. For 48 years she has helped to guide my life and shape who I am. Now we often sit in silence, and our relationship is not diminished by this. In a very real way, I think it’s strengthened.

In the last few years, I’ve had moments with her that have gone beyond verbal communication. There are moments of peace and stillness and even joy that have a different quality than I’ve felt before. It’s a new experience, and even if things “should” be different, I am finding new treasures that we share in the present moment.

Today’s newsletter is shorter than usual—and more hastily put together. As a fellow traveler on this journey, I’m sure you understand better than most what is in front of me yet today. I have miles to go before I sleep, as Robert Frost might say. Thank you for your understanding, dear reader. If you have good vibes to send our way, I will receive them with gratitude.

-Ben