last.

"Think of five things in your life that are meaningful," instructed our dementia training leader, "and write them down." The PowerPoint slide had a cartoon robber on it, under the words: DEMENTIA IS A THIEF.

My partner and I took out the scraps of blue paper and began to write. I was almost paralyzed by how broad the assignment was--of course, people came to mind first, but that can't be all she meant? Would I write down each of my children individually, or just write "family" on one and consider everyone a part of it?

I looked around and people had their heads down, writing steadily. Time was ticking and I had to start. I stared at the blue scraps and wrote the first thing that came to mind: sisters.

To complete the rest, I thought about what makes a day good for me--spending time with my husband and daughters, doing something physical, learning something, and writing in some way. 

Our scraps of paper heavy with the weight of life's meaning, we began the exercise.

"You are getting older. You can still take care of yourself, but you have early stages of dementia and know down the line you'll need help. You decide to move into an apartment at a retirement community. Choose one thing to let go of." 

We all laughed, joking as people gave up their houses, dogs, careers, friends, spouses, and kids. It was ridiculous, after all. We would never give up these things.

"Ok. You're progressing in your dementia and need more care. You move into assisted living, and have to choose something else to let go." We again tried to joke as we discarded another blue scrap.

At this point I had let go of husband/children, and exercise/movement. But obviously we weren't finished.

"You got to choose those things--even though it wasn't pleasant--but now your dementia has progressed even more and you need to transition to memory care." We began eyeing our remaining scraps, knowing what was coming next.

"But this time," she interrupted our activity, "your partner is going to take something away. The first two times were tough but you got to choose. Not anymore."

My partner and I playfully tried to convince each other not to steal, but we had to--his daughter, my writing.

"Now, your dementia is severe. Your partner is going to take away something else. But this time, you can't talk to each other."

The mood dropped. We weren't laughing anymore as we silently stole each other's family, education, freedom, and friendships. It was an exercise but I still felt the pang as he took away my learning.

We had one more blue scrap in front of us. The last to go. 

I stared down. Sisters.

*

The chaplain and I took our seats in the living room. She was bundled up in blankets in a recliner, and we talked and laughed for well over an hour. This hospice visit was for spiritual support, whatever that means for any particular patient, and with this patient, we were simply recounting old memories, learning about her life and family, and laughing hysterically at her jokes and humorous take on the world. 

She talked about her husband lovingly, spoke briefly about her children with affection, and didn't bother to mention any of the grandchildren. But what she really wanted to talk about was her sister--the one she'd been so close to, the one who'd squeezed her hand when she took her last breath, the one who seemed to pop up in every story she told. 

In a small apartment with a paid caregiver at the beginning of hospice care, she was nearing the end of her life. And she wanted to talk about her sister.

*

In Jolene's folder from school, there was a drawing accompanied by a writing prompt and those tell-tale lines that help little kids learn to write. The prompt was "In the spring I like to..." and she had completed the sentence in her careful lowercase letters: "...bring my baby sister outside on my trampoline." This activity has become a favorite, little Penny giggling as she crawls around the inside of the trampoline, Jolene walking gingerly around her, taking very seriously our warnings to be careful. Their faces light up when they see each other--first thing in the morning, Penny shrieking with joy in her crib as Jolene comes in and flips on the light; in the afternoon when Penny sees Jolene's face through the window of her classroom at school; at night when we scoop Penny up to put her to sleep, and Jolene whispers in her tiny ear, "I love you more than you could ever imagine. I really do."

*

If I have time to myself, either in the car or out on a walk or a rare blessed moment when both kids are asleep or playing independently, I instinctively reach for my phone. I make three phone calls--my sisters--changing up the order I try them in. If the first one doesn't answer, I leave one of my trademark three-minute voicemails, and move on to the next. If nobody answers, I usually feel too tired from all the message-leaving to call anyone else, and will at that point put on music or a podcast. Despite having plenty of friends to call, I always seem to start with my sisters. 

*

During the dementia training, we learned that in advanced dementia, a person will revert to the first language they learned. So a bilingual Portuguese-speaking patient, for example, will eventually lose the ability to communicate in English, but will retain the Portuguese. "First in, last out," our instructor kept saying. We also learned that for many people, their memory and sense of self is rooted in a particular time--usually age 20-35. So if someone got married after the age of 35, they may not actually respond to photos of their spouse. But the memories and people and experience and feeling of the age they're frozen in will remain. 

Besides my parents, my sisters were the first relationships I had. It wasn't always sunny--I desperately wanted to be like my older sisters, and, like all older sisters, I found my little sister annoying. We all had different interests and personalities and life has taken us in different directions; yet somehow, I always find my way back to their numbers first. And while I have no idea what the end of my life will be like, or if I'll end up with dementia, I do suspect that my sisters, first in, will ultimately be the last out. And the comfort in that is something that could never be taken away. 

Whatever else goes, they will last.