The reality of loving someone with dementia.

June 11, 2018


About one month ago I went to visit my abuelos in Miami for one week. My abuela is one of my favorite people on the planet, and I just love being around her fun spirit, youthful nature, and just overall beautifully caring heart.

Don't get me wrong, the week in Miami was so amazing. Spending a week of quality time with her and my abuelo was priceless, memories I'll cherish for the rest of my life. But, a few days in, I really started to realize that my abuela really wasn't remembering much at all, and it really started to get to me in a sad way.

Dementia is an ugly, ugly disease.

It’s so unreal to think that a woman who had a memory as sharp as a horse now only remembers her past with a clarity I cannot even explain. Yet, she doesn’t remember what happened 5 minutes ago into a conversation, an action, an experience. And those 5 minutes are slowly yet rapidly turning to even fewer minutes between, even seconds. To know that if I take her somewhere she will enjoy, like a walk around the lake or into a new church she can pray in, she will only remember that split minute, enjoying the experience in the exact second it happens, then sit back as I watch the memory float away from her mind into the space between what is a memory and what is an experience. For someone with dementia, to cherish is in the instant; you can maybe say that someone with dementia lives “in the moment,” quite literally. To live with her experiencing this every second of every day was quite the emotional experience for me, since I really didn't know how to deal, and how I can help her live her best live in the second she remembers it.

Now onto the beauty of the disease: the way someone with dementia captures long term memory buckets so vividly, as if they were living back in that moment. My abuela, she remembers to the smell and touch of what it was like to live on KM 28 on the Rio Acre, across from Cobija, Bolivia. How to make paper flower bouquets, the ones she made for her wedding to my abuelo in Liberia, Peru, the ones that if you asked her to make them again with the tools in front of her, she won’t know what to do with them. She remembers the faces of the people in the procession who took her mother to be buried when she was 5 years old, and she remembers how the coffee smelt her mother drank every morning in her bed at 5am. She remembers every dance, the name of all of her relatives, the smell of the caucho her father traded with the Americas, the way it felt to ride her horse in the wind with her favorite brother out of the 14 others. Listening to her remember these things as if she is currently living them makes me live in a sort of dream, pushing me into a boundary I don’t know anything about. She transports me there through her smile, the way her eyes light up or droop down as she recalls these memories as we see them, living reality as she sees them. And when she speaks to the now, the present day, and repeats herself over and over and over again, you know it’s important and you know it’s pressing in her mind, if those are the details in her memories that resist being lost in the void between memory and experience, what has happened and what has yet to happen.

She had a lot to teach me in the week I spent with her in Miami. In a way, everyone should try to live in the moment, as it does create more beautiful memories. She taught me patience (I have an insane appreciation for anyone who cares for the elderly now),