Losing More, Again
The quarantine has pushed people living with dementia even deeper into devastating isolation.
In the time before the corona virus I was visiting my mother in the nursing home in the Bronx where she lives. My mother suffers from dementia, a progressive brain disorder that manifests as forgetfulness and impaired thinking. I had brought some games with me that I had found at a children’s toy store in my neighborhood. Holding a conversation with my Mom was a challenge and I was excited to use the games as a tool for us to have fun together and to build a connection between us. At the time, naively, I presumed that whatever was going on in her head was something similar perhaps to childhood “in reverse”. These puzzles and games that were designed to develop particular types of logic and reasoning could be matched to her cognitive ability. Voilà. I was hopeful that we found something to counter the divide that was growing between us.
My moment of optimism was brief. My mother looked at the handful of puzzle pieces spread out over the table and, with some encouragement from me, picked one up and began turning it awkwardly in her fingers. I saw her face filling with questions, and then confusion, frustration and pain. She became upset and started to retreat.
So, I gave up on the games and tried to fill the rest of our visit with pleasant chit chat and calm energy. As I packed up the games to leave, I looked at them with fresh eyes, briefly sharing her perspective. I began to see levels of complexity to them I hadn’t noticed before. How, exactly, do we categorize shapes in our brain? How do we recognize patterns? How do we organize our bodies and mind to act towards a specific goal?
Leaving her room that afternoon I walked down the hallway towards the elevator, passing residents of varying physical and mental capacities. Anxious and uncomfortable, it occurred to me that I wasn’t so much disturbed by my Mom’s incapabilities as I was by the revelation of a deep fragility underlying my own faculties. I tried to greet as many people I passed as I could with a smile and a nod. Everything suddenly seemed precarious.
Before Covid, it was hard to imagine a more isolated and marginalized group than people with dementia. Caring for a loved one with dementia is like trying to grasp them in a swiftly moving river, trying to leverage against an encompassing current. You nurture and develop every connection that can possibly slow your loved one’s slow drift away from you.
Resisting these forces of separation means to fight virtually all aspects of our culture and society. Community based support for older people is basically non-existent. Our health care institutions are built to treat and cure disease, not offer the kind of interventions people need as they grow older and their bodies and minds change. The shape of our domestic lives offer little room to accommodate additional layers of caregiving. The class of professional caregivers, the majority of whom are immigrant women of color, are themselves subject to breathtaking systemic devaluation.
As the disease of dementia pulls people cognitively away from us, our culture accelerates the trend by disassociating people out of our shared space, away from family, friends and community, and into marginalized institutional settings.
Countering these sets of forces is to find the means to connect to our loved ones within a hostile and unforgiving landscape. My Mom loves flipping through old family photos. The faces look familiar to her and she enjoys hearing the stories of our lives together, retold.
Before all this, my mother was a fantastic talker, she elevated chit chat to an art form and she prided herself on the ability to argue about anything, with full passion, without limits. As the dementia progressed and her mode of conversing began to change, I was worried that the foundations of our relationship would slip out from beneath us.
My fears were not fully realized. Conversing with a person with dementia can be a blessing because those conversations help us find meaning beyond the technical functioning of language. Vocabulary becomes imprecise. My Mom might use a word that might have similar letters in it to the word I would use. Or the meaning of her words might have an oblique association to an idea she is trying to communicate. Once on the phone she told me she was at a football game. I think she meant that it was crowded and noisy at the nurses station she was standing at where the phone is?
Conversations with her require some flexibility on my part, and a willingness to set aside “understanding” as a precondition for communication. A dialog is a back and forth event, each person contributes to a shared experience. Common ground is established by a spirit of generosity and reciprocity, by speaking your mind and then in turn acknowledging that you have heard the other. Especially when you feel that maybe you don’t grasp their meaning. Is this feeling of connection an illusion? Maybe. But isn’t that doubt an underlying feature of all conversations? Regardless of cognitive function?
Finding the “shared terrain” of conversation with my Mom is challenging and can be frustrating, but I have never felt hopeless about it. And I had never felt overwhelmed by the process or that our efforts to connect with each other were destined to fail, until the pandemic struck.
The virus seems designed to ruthlessly lay waste to our fragile infrastructure of communication and connection. The past few months have been a horror-show. We have helplessly watched as every tool available to us to foster and nurture connection has been broken.
Primarily we are robbed of each other’s faces. My Mom recognizes my face and my appearance triggers positive feelings and comforting emotions within her. Additionally, it seems, emotional literacy is impacted less by the progressing dementia. I have never seen her confuse one emotion for another, or misinterpret a feeling for something else. If I smile she understands that to be a friendly gesture and takes comfort in it.
I have not shared space with my Mom since March 8, the week her nursing home went into strict quarantine. On May 8 I was able to schedule a window visit with her. It was a great relief to see her directly, without the alienating effects of the telephone or facetime apparatus. Finally we were able to share the same “present moment”, a feeling that is elusive when communicating with her via electronic media.
It was a difficult visit, however. I tried to show her pictures of the family through the window, but the glare made that hard. I wanted to align myself with her gaze, which was impossible given the physical barrier between us. I needed to listen to the subtleties of her speech, to figure out what was on her mind. But I could hardly hear her voice through the window panes.
Communication is never just about language. Decentering language is an opportunity to recognize all the ways we connect and exchange content with each other outside the rigorous architecture of grammar and vocabulary. Our technology, seemingly so advanced, is utterly incapable of recognizing those dimensions of communication, much less support them.
I understand and respect the source of my Mom’s anxiety. She doesn’t really know where she is. She doesn’t understand who the people are who surround her and involve themselves intimately in her body and life. She is Barbara and Adam opening the front door to their home in the film Beetlejuice and being confronted with a vast unnavigable desert. My Mom is perpetually standing on that threshold, always a step from becoming lost and disoriented.
Back when I could visit her, my Mom and I had a funny ritual of saying goodbye. I would give her a kiss and ask her if she wanted to walk me to the elevator. She invariably would because she is a generous person who likes to care for the well being of those around her. So we would take a slow stroll down the hallway. But by the time we get to the elevator it becomes clear to her that she has no idea how to get back to her room, or that, once I leave, have any idea what she is doing standing in a strange hallway filled with unfamiliar people. I then suggest that I walk her back to her room, and there we say goodbye, again, for a third time.
When I leave a visit with my Mom I am not always sure what happened during our time together, or even what we talked about. At the same time, I am utterly overwhelmed by the impact that these conversations have had on me over the past few years. I am humbled by the opportunity to see, think, and feel things I would otherwise have no access to. It’s a gift.
