Alzheimer’s Non-Patient

I often forget that my grandmother still exists, because, in a sense, she doesn’t. My grandmother lives five minutes from me, but I don’t see her, at least not in her body. I see her in objects — concrete items that exist even when they are not present. She is the shark cookie jar, the blue pompom gloves, and the photo of her holding her own photo next to my six-month-old self. I’ve completely detached myself from the body because when I speak of “her,” I refer to my Nana’s self and her self has been lost for more than half my life.

When I visit my grandmother, I feel like I am stuck in One Flew Over the Cuckoo’s Nest. There is a sense of chaos, despite a calm and quiet atmosphere. There is an overwhelming sense of loss as well. Men and women, who were doctors and scientists, activists and painters, sit slouched in chairs half awake in front of a television. The decorations of the facility are pretty, attempts to be interesting. They try to maintain a somewhat normal component to the atmosphere, but as the birds chirp behind their glass wall and patients hold their pants on their way to the bathroom, it is impossible to find normalcy in the hallways of dementia. Every time I visit, those rare occasions every few months, I get uncomfortable and nauseous. Her room is an ode to the past — the walls of photos mocking the present. She is no longer a blond, not even a fake blond anymore. She is no longer a model; she is toothless. But her nails are always painted. The nurses paint nails and perm hair. They try to give each patient an identity, allowing the colors of the nails to speak for the patient. But my Nana cannot choose the color, the nurses choose the color.

It is impossible to fully understand the thoughts and perceptions of an Alzheimer’s patient. And this is the saddest part. Does my Nana know that she cannot talk? Does she try? Can she think? Is she sad? Even if she is oblivious today as a patient of severe Alzheimer’s, she couldn’t have always been this oblivious. My grandpa tried to hide the disease from her, but she must have known, at least a little bit. I don’t know why I hope that she was aware at some point. It’s more painful to know, but there is some dignity in knowing. Perhaps it’s because we would want to know if it were us. Since we cannot understand whether the patient suffers with her loss of self, we project it onto our own self. We imagine ourselves — we imagine ourselves as old, without memory and little sense of placement. We become the Alzheimer’s patient.

In medicine, the role of personhood has become a topic of ethics and has provided a reassessment in the way we treat patients. We understand the person as an internal psyche that is influenced by the world around them — representing itself through desires, cries, and identity. But what happens to this patient when the person can no longer articulate her identity? This deep psychic interior struggles to communicate any sort of identity with the social world and thus we can begin to question the actual presence of a self. As a result, the Alzheimer’s patient is often treated as a victim of Alzheimer’s, rather than as an individual. She is dehumanized and objectified. She hardly exists in the present. She has become part of the disease.

Another view of “self” is more forgiving of forgetfulness. Self is represented through interdependence and the emotional presence and attachment in relationships. An Alzheimer’s victim is kept alive by the people who knew her before she faded. While this second view can provide comfort for family members and caregivers by asserting that their loved one’s personhood is still maintained through relationships, it can also provide tension when these relationships have altered. The present moment emphasizes the loss of self, while reflection on the past creates pains of nostalgia.

In severe Alzheimer’s, though the self might be present within the patient, the representation of this self depends on the efforts of others. The patient loses all form of autonomy. In a society in which autonomy is at the basis of any ethical debate, the idea of losing one’s autonomy due to mental decline creates a sense of panic and fear. The hereditary nature of Alzheimer’s amplifies this paranoia. Every time my mom forgets something, misplaces something, or seems spacey, I see my grandmother. I try to find hints and clues in every little motion or lapse, things that should cause no worry except that they do. And even if they did mean something, there is not much to do except wait. I imagine how I will maintain my mother’s identity, ensure her autonomy.

I used to not think that I had one main fear, no phobia that prevented me from exploring life. But now I realize that my greatest fear is not knowing. My greatest fear is losing my ability to communicate and demonstrate. My greatest fear is becoming my grandmother.

I used to not think that I had one main fear, no phobia that prevented me from exploring life. But now I realize that my greatest fear is not knowing. My greatest fear is losing my ability to communicate and demonstrate. My greatest fear is becoming my grandmother, but I don’t really know who that is. Steffan Block ends an article on Alzheimer’s on a positive note, “Perhaps, after the horror of memory loss passes, there might really be some relief in relinquishing your self and returning to the endless present in which an infant lives. Perhaps late-stage Alzheimer’s is simply unimaginable to those not afflicted with it. Perhaps it is incompatible with language, a place ‘beyond words.’”

Steffan Block ends an article on Alzheimer’s on a positive note, “Perhaps, after the horror of memory loss passes, there might really be some relief in relinquishing your self and returning to the endless present in which an infant lives. Perhaps late-stage Alzheimer’s is simply unimaginable to those not afflicted with it. Perhaps it is incompatible with language, a place “beyond words.” (Block)

A family friend recently described driving in the car with her mother, an Alzheimer’s patient, who has not spoken in years. Suddenly, her mother firmly stated, “You missed the exit.” Her mother had always been a back-seat driver. A few weeks ago, my mother used my car to bring my grandmother to the doctor. In any other car she is normally completely out of it. This time she was sitting up with a smile on her face, acting in a way we hadn’t seen in months. My car used to be her car. When music plays, my grandmother responds. Frank Sinatra brings a smile back to her face and she will begin to dance like she did when she was in theatre. Even with severe Alzheimer’s there are moments of return, glimpses at the presence of the self. These moments give the non-patient hope — hope that the person they know and loved is still present, hope that the self is not completely lost. Is this hope for the patient or is it for us?