A photo essay about dementia
My grandmother, Claudina, was diagnosed with dementia in May 2010, and in the past year and a half, I have watched as this strong, capable woman whom I cherish has increasingly lost herself. Like me, all of the family has felt helpless during this cruel process, so I began taking pictures as a way to navigate and understand this experience, and to maybe help others who are in our situation. I have traveled from New York City, where I live, to their home in Orlando, Florida, probably 10 times since the summer of 2010, most recently in September 2011. The photos you see here are part of a series that has come to be called “Claudina.”
Claudina had been showing symptoms for months before her diagnosis: irritability, impatience, and occasionally hallucinations. She’d see bugs crawling on her arm or in her food. If there was a disagreement, she’d refuse to back down. She saw a doctor for something minor and then insisted on a second, third, fourth opinion. Her stubbornness was irrational, as if something had taken her over. Some other force.
The diagnosis didn’t change anything at first; it just gave the family context for her behavior. My grandmother has the sort of dementia that manifests as rage, but because her episodes didn’t occur often, her illness was manageable for my two aunts, her daughters, who live near her, and for my grandfather, who was 87 at the time.
We hoped for the best, but by three months later, the situation had become a crisis. Her paranoia was no longer manageable. She was certain my grandfather was having an affair. Many affairs. When bills arrived in the mail, she read them and saw other women’s names. He’s paying for other women, she’d say. She’d find an item of clothing belonging to one of my aunts and holds it up as proof that one of his mistresses has been there.
This would all have been almost comical, as sad as it was, except that she was so enraged at these (imagined) infidelities that she wanted to hurt my grandfather. Her illness was such that she was already doing so verbally. When she would have one of her rages, she’d talk for hours about what a terrible, disgusting person he was. How he had wronged her. How she has no money now because he gave it all to these women. That he is the lowest person on earth. Ugly things, she’d tell him, and her face would become distorted with an anger so potent that it was frightening.
Sometimes these rages would end in her weeping, because she’d feel vulnerable and betrayed. Her sadness seemed to come from deep inside her. It was so heartbreaking to see. And sometimes there’d be no sadness, only hard anger. She’d threaten to hurt him. Once, my aunt had to call the police because my grandmother physically attacked her. Last fall, my grandfather called 911 because she attacked him and he held her wrists to keep her from hitting him. Because her skin is fragile, his grasp left her bruised and bleeding.
So she was taken, against her will, to a psychiatric ward at a local hospital. She spent three weeks there, and there were a lot of rules that made it feel like she’d been imprisoned. We had to check our purses when we visited. If we bought her a hoodie to stay warm, we had to remove the cord that you use to pull it tight. No cameras. No going to her room; visitors were allowed only in the community room.
By now, we knew that she could not come home. It just wasn’t safe, for her or my grandfather. So we did what we had been dreading and delaying: We moved my grandmother into a nursing home. I happened to be in town at the time and had the chance to see her there. It feels like a small hospital—shiny linoleum floors and beige walls, nurses in scrubs and crepe-soled shoes, generic furniture, stark lighting. Claudina is in a wing called Memory Lane.
For months at first, she would have bouts of anger, sometimes directed at my grandfather, sometimes at my aunts. When she wasn’t angry, she would be bereft or desperate. She would physically hang on to my grandfather or my aunts when they visited her at the nursing home, begging them to take her back with them. She missed her house, her plants, her things, her life. I can’t express how terrible it felt to have to leave her each time. I wanted to rescue her.
Claudina’s rages subsided over time. She still did not want to live in the nursing home, but she seemed resigned to it. Her acquiescence was more painful to the family than her resistance. It meant she was fading, and it confirmed what none of us wanted to admit: that she would never be coming home. Over time, she became more thin, more frail, and she moved more slowly.
In recent months, her decline has been dramatic. When I went in July, we were able to walk out of the nursing home to the car together so I could bring her home for a visit. Her eyes were still bright. When I went back in early September, I found her subdued, almost silent. Her hands trembled. After I left her one evening, I sat in the car for a while in the parking lot. There was a patient standing by the door, holding on to his walker and staring outside. There’s almost always one resident standing by the exit but not trying to leave when someone from the outside opens the door to enter.
They know there’s no getting out. There’s only waiting.
All photos by and ©Kristina Feliciano unless otherwise noted.