Required Parts for Living

The Aliveness of Dementia

My grandmother is 87 and has severe dementia. This is a typicality for most 87-year-olds; jokes made in reference to the infamously bad memory of the elderly are so common, the proverbial “we” give little pause to the disconnect with reality that worsens with age.

In her collection of poetry Don’t Let Me Be Lonely, Claudia Rankine meditates on the I versus the we and how inseparable and separable those subject pronouns are. We have all experienced people with dementia, but what do I do about it? How should I feel about it, according to how we feel about it? The heartbreaks associated with dementia and Alzheimer’s are well-known and universal: a shell of the person you once knew lives on, forgets most of their experiences, forgets who their family and friends are, is often unable to remember to feed themselves, is often unable to go to the bathroom by themselves, is often oblivious to the chaos they inadvertently cause.

But is this truly oblivion? And is the shell-of-a-person metaphor a sufficient description of what is actually happening to someone with dementia? If something is being hollowed out, does the empty space take on a new energy? I’m not sure if my grandmother, who is now very irritable, grouchy, and worst of all, stagnant, was always this way, or if the illness exacerbated some of her uglier characteristics. Some of her other traits seem new, as if they came with the diagnosis. She no longer says “I love you” back to any of us anymore. She doesn’t like to walk everywhere anymore. She doesn’t cook.

My grandmother forgot who I was for the first time the other day. She asked me who my mother was, and when I told her, she gasped, and said that that was her daughter. I told her yes. She did not know until then that the person standing before her was her granddaughter. Usually she can remember at the very least that we are related, that we are connected in some way. It didn’t make me sad that she couldn’t remember who I was, though I expected it to. she was diagnosed after my grandfather’s passing, the doctor described her condition as “onset by depression”. I don’t mean to over romanticize my grandmother’s response to my grandfather’s death. I don’t want to portray the pain of a widow “onsetting” her dementia as a model for true love. It fills me with such sinking sadness whenever she brings him up. A few months ago, she proclaimed that he had “left her and ran into the ground”. I was struck by the coolness of her tone. She didn’t cry at the funeral. She barely talks about him now, though sometimes I see her going through old photo albums, saying his name each time she turns the page and sees his face.

Any time I talk about my grandmother to someone else in my family, I hear the same things: I feel bad, I feel so bad, but what can you do? I start to think of our collective bad feelings as empty calories; there is nothing we can build with them, they don’t make us feel good. My grandmother spends every day the same: she’s up at 7 for about an hour for breakfast, then back to sleep. At around 1PM, she gets up to eat lunch and watch TV. Between lunch and dinner is a rotation of falling asleep in front of the set (which is up at full volume), going outside to water (drown) the plants, and back in front of the TV again. Often, she forgets she is in America. And we feel sad watching her, because we remember a time when she really lived. Other times, we have to laugh at how far gone she is. Often it is the only solace we can find in her condition. We laugh off her repeated phrases, the questions she asks us over and over again, her tendencies of kleptomania. A source of laughter, she — as most of the elderly are — is no longer part of the “us”.

I’m bothered by the idea that people can live livelier than others, that someone with Alzheimer’s is not really living.

Sometimes my grandmother pops up from the couch, waking from a dream, and asks me where “the child” is. She asks where the Pasig River is. She thinks she still lives in the Philippines. Perhaps it is true that she has trouble perceiving reality, but I can’t buy that this makes her crazy, that this means she is a hollow case of a person. She is remembering, very vividly, something she has already lived. She is experiencing the lot of it right in front of me. Along with old memories, she holds on to her Catholic faith. Whatever part of her that knows how she sometimes treats her family apologizes to God, asks for His forgiveness. Prayer is a normal, wonderful thing for some of us to do; a complete act of faith, a giving over of oneself. I watch my grandmother pray and wonder what is happening in her mind, as if it would help me reach a deeper understanding of what she’s going through, the patterns and rhythms of her day, to know the neuroscience behind her disease.

We talk about those with Alzheimer’s as though they are already dead, as though their state of being in the world is nearing its end, and cannot be called living. We treat newborns the opposite way. At the other end of existence, we find glory in everything babies do. Though they’re dependent on others for food and bodily cleaning and can’t really communicate with us, their stage in life provides a different context, which makes us react differently. They are becoming “more alive”, instead of having once been and withering.

How striking it is that the experience of Alzheimer’s “we” is never the experience of the afflicted. It is the observer whose pain we focus on. This makes sense, considering the ease of seeing our own mortality in others. We delight in watching children do things for the first time because they have their whole lives ahead of them. We shudder at the lives of the elderly because their time is ending, along with ours. Though the time before our lives begin and the time after they end are the same, we don’t think about them as equal. We almost can’t think of them as equal, human as we are, because that would render our existence in the world as meaningless. And we are taught that to truly live, we must be able-bodied, sharp-witted, youthful; as though we could live our lives “fully”, as though we all have a choice in the matter.

Today she held my hand and thanked God for her loving husband, her five girls, her three boys, for everything she knows she has. She commented on the unknowability of her death, but noted that it would be soon, that she would be joining my grandfather soon. She told him to wait. My grandmother cannot remember what she said one minute ago, but she gives thanks.

So what are the required parts for living, and are they unattainable? Are they just things we find thrust upon us, designated by time and place and randomness? In his poem Life, Cory Brown describes time as “more like a taste, a ripe mango on a bed of rice, sautéed with raisins and walnuts and olives and sometimes you bite down hard on a pit, or eat too much of it and it comes back upon you, say, the next morning when you least expect it”.

And that’s just it, isn’t it: the suddenness of everything. We are in and out of moments at a pace so inconceivable that if we think about it too hard, it makes our heads hurt. My grandmother, lacking in short-term memory, repetitive with questions, is just at the far end of the fickleness of human experience. She is constantly renewing her moments, reaffirming her place on earth. Sitting on the couch, staring at the television, I know that my grandmother is alive. When she is drowning the plants outside of the house and hoarding napkins, I can see she is aware of her purpose and the energy that fills her still.