Rewriting Her Story: Receding into Dementia
Maybe we need to look at the descent into Alzheimer’s not as loss, but as a shift in my mom’s perspective.
Maybe we need to look at the descent into Alzheimer’s not as loss, but as a shift in my mom’s perspective.
The disease progresses at its own pace, makes its impact felt in different ways on different days. Forgotten names. Memories that do not correlate with reality — she tells people she moved to Las Vegas with her parents, that my dad came out later. There is the loss of language, the erosion of vocabulary. This and that, she says. Things. Big things. And the anger. She yells at my dad, loses patience, loses any sense of proportion. Accuses him. He surprises me. He holds it together, until he can’t. I don’t have to take this, he says. And the cycle begins again. She’s quiet, watching TV or doing a word find puzzle. He’s in the chair nearby, and she starts asking questions, repeating the questions. He answers, repeats the answers, but she doesn’t understand. She asks again. Changes the question, garbles the syntax, makes no sense.
She talks about her eye surgery, cataract removal. Complains of floaters, bits of dust-like shadows in her eyes. “Take the eyes out and you clean them and put them back in. That’s how you do it. They didn’t do it right. Things — when I walked outside. These things were this big” — holds hands in a circle touching thumb to thumb and finger to finger. “Had to” — rubs eyes with hands. “They didn’t do it right and they tell me it’s done. That’s how it is. I said, lady, if you open your mouth it’ll be your foot your fist in your mouth. It was white. Like those things” — points to closet door — “big as can be. It was clear as can be, then they did this.”
And she continues, stream of conscience. He and the other guy. People in her house. They come in. The kids. The other guy. They do things. This and that. Language is failing her. Language, how we make sense of the world and make sense of our world to others, is leaving her.
As often as she lashes out, though, she also shows her love. She hugs unconditionally as she always did, wrapping us up in her arms, telling us she loves us. She forgets names, has lost some permanently, but she recognizes the important faces, can make the most basic and important connection.
Sallie Tisdale, who has worked in Alzheimer’s and dementia care, wrote in Harper’s in March that “the demented,” a word that has acquired an undeserved stigma, show a surprising resilience as they “navigate each day’s puzzling details.”
I know their efforts may look to many observers like an embarrassment of loss. I see the riches: the brave, vulnerable, completely human work of figuring things out. People with dementia sometimes have a rare entrancement with their surroundings, a simplicity of perception, a sense of wonder.
It can be difficult to see, though I understand what she means. When my mom is around a young child, she becomes childlike herself, though sometimes she will become possessive, and she is unable to read the concern that can appear on the faces of the parents she approaches, people who do not know mom’s backstory and lack the ability to communicate in her language. “Being with a person who has dementia,” Tisdale writes, “is not that different from being with a person who doesn’t share your language.”
It is a little like talking to someone who has lost her tongue and cannot speak, has lost his hands and cannot write. This is not a bad thing; it is just a different thing. It requires a different kind of attention.
I try to keep this notion in mind as I watch mom and talk with her, but it is difficult. They are here for six days, and it feels longer. Dad seems a bit freer here. He has someone to talk with, talks and talks, and I just listen. Fox News. Nevada politics. I try to move him to sports, but he swings back. I try to avoid politics with him — we have opposition views — but I know he needs my ear, and it is a topic he enjoys. Living with an Alzheimer’s sufferer can be isolating. She may be losing her language, but he is losing the opportunity to engage, and that may be just as damaging.
“Human language,” Mark Pagel, an evolutionary biologist, wrote in The Atlantic in 2015, “is compositional.” Humans : We “communicate in sentences composed of discrete words that take the roles of subjects, verbs, and objects” to create “an endless variety of messages.” Humans use “language to look into the future, share the thoughts of others, and benefit from the wisdom of the past.”
We can make plans, cut deals, and reach agreements. We can woo prospective mates and threaten our enemies. We can describe who did what to whom, when they did it, and for what reason. We can describe how to do things, and what things to avoid. We can express irony, surprise, glee, worry, pessimism, love, hate, or desire. We can be witty or grave, precise or deliberately vague.
And we can tell stories, ours and other people’s. When deprived of language, of verbal interaction, we begin to lose a sense of ourself within the world. An extreme example of this is solitary confinement in prison. As Frontline reported, psychiatrist Stuart Grassian “interviewed hundreds of prisoners in solitary confinement” and “found that roughly a third of solitary inmates were ‘actively psychotic and/or acutely suicidal.’”
Grassian has since concluded that solitary can cause a specific psychiatric syndrome, characterized by hallucinations; panic attacks; overt paranoia; diminished impulse control; hypersensitivity to external stimuli; and difficulties with thinking, concentration and memory. Some inmates lose the ability to maintain a state of alertness, while others develop crippling obsessions.
The symptoms Grassian describes, while extreme, sound familiar. My grandmother experienced hallucinations, and I’ve read of other Alzheimer’s suffers who have, as well. There is the growing deficits in concentration and memory, the loss of attention, and her obsessions. She constantly plays with her phone and checks her jewelry box. She rearranges the kitchen cabinets nearly everyday, and she can’t let my dad out of her sight. During this visit, she’s obsessed about her purse, keeping it with her even in the house.
Dad gets agitated, complains that it’s like being a bachelor without the freedom. His isolation is eroding his sense of self, as well. He has started repeating his stories, though not because his memory is faulty. The lack of conversation at home is causing him to fill in all blank spaces when he does have someone with whom to talk. He has struggled to adapt, but probably is too old to do so. He argues with her, corrects her, which only leaves her more agitated. So he goes out less and less. He is isolating himself and her, and I fear that is making it worse for both of them.
He is doing what we all do. He is protecting himself against embarrassment, thinking everyone will judge him based on what she says or does. And he is judging everything she does against who she had been, finding the changes unpalatable, painful. She is not the woman he married, though how could she be? None of us are as we were, are who we were. We all change. The difference, in the case of my mom, is that the changes are greater, deeper, more difficult to understand, to adapt to.
“The people closest are always comparing now to then, the way she is now to the way she used to be,” Tisdale writes. “When we say She’s not my mother anymore, we mean she is not the mother she used to be, the mother we remember.”
Seeing it explained in writing makes it seem self-evident: “the self is,” Tisdale writes, “at once both changing and stable.” We can accept this for ourselves, but not for those close to us. Their “story” is not allowed to progress independently from our story.
I may not be the same from year to year, but I expect you to be. My autobiography includes you as a character, fixed into a particular part of the story. She was never just his mother, but he’s not in the best position to see that. He thinks she has died because she forgot him. She left his story.
Mom is leaving dad’s story, our story, but she still has her own story to tell. She has an identity, and it is likely that she knows her memory is fading, her facility with language is disappearing. But she is in there. The proof is the hug, as I said, that moment when every fiber of her being is focused on that which is most important to her, has always been most important.