On a recent morning, I woke early to see a landscape covered in snow. It was a winter visit to see my mom and the first time I had been to her home for this kind of winter weather. 

While I cooked our breakfast, she wondered at the icy trees and sidewalks. “I was not expecting this! Was it predicted?” Yes, it was. 
We sit down to eat.
“Did you see all that snow?! Did we know it was coming?”
Yes. We watched it fall yesterday. 

My mom has dementia. It has been a mix of emotions (and tasks) going through it with her and my siblings. No one in our family has had it before and I sometimes joke that we’d be better equipped to handle cancer or heart disease. 

It turns out many, if not most, of our friends and family are similarly perplexed. It may be because dementia can affect people differently, or because people are so busy managing their family member’s needs they don’t have time to reflect on it, or any number of other reasons. But once you open the topic, it turns out there is a mix of stereotypes, unfocused sympathy, and “oh, gurl, I’ve been there.”

Mom has been in a plateau for some time now. Her short term memory is…well she can’t remember if it snowed yesterday. But she can do things that I never realized were a measure of health: bathe and dress herself, make her own breakfast, walk to and from a friend’s house without getting lost, remembers the number code to get into her home. She remembers close family names. She is physically and socially more active than I am (for real!) with classes, dances, outdoor walks, and shared meals. She loves to work a puzzle.

There are some very strange things about dementia that I was not expecting and I often get a shared laugh from those in-the-know. She invents stories about her neighbors, how they are divorcing and how their house is being joined with the two next to it. Then the couple walk happily by with their dog. 

But there are elements of her personality that are more evident now than ever before. She is always asking if you have what you need (water? food? a blanket?) or if you need help with whatever you are doing. Always ready with a hug. 

There was an early stage when she could tell what was happening to her mind and that caused a lot of fear and anger. Now, she no longer panics when she realizes her memory is slipping and is more content to exist in the moment. She is almost never anxious about the future or regretful about the past. 

Every night at dinner she said grace from memory. And when she asked if I wanted to say it instead, I always let her because it is a grace to hear her say grace from memory. 

One day her situation will start declining again. We know what the options are and are ready to move to an escalated level of care. For now, her healthcare providers say she is safe and better off where she is with the help she has. 

This journey is a tough one for me and my siblings. We balance the need to attend to all her “business” with the desire to be with her in person as much as we can. (We are grateful for all the helpers that see her every day!) Often it means we see less of each other as we take turns visiting from our various homes around the country and the world. 

Things are not easy and will get harder. We sort of know what is coming, but when it does, I have a feeling we’ll ask, as my mom did this morning, “I wasn’t expecting this! Was it predicted?”