I asked my father the other day if he was hungry for lunch. He paused for a moment, considering what I had asked him very carefully, then pointed to an empty part of the room and said with sincere suspicion in his voice, “who are those two people?” My response as I got up to make some sandwiches was equally sincere: “I don’t know dad, who do you think they are?” “Well . . .” he replied, giving the question real consideration. “I just thought you might know.”
This is how we communicate now. It’s a perfectly typical interaction on an otherwise unremarkable day. There is an unrelenting distance between the way he perceives the world and the way I do. One of the things that caring for someone with advanced dementia teaches you is that really, there is no one true version of reality. The difference between the kind of reality I share with my father and that which I share with all the other people in my life is only outcomes, and even then, that’s a tenuous link. I can communicate with my brother or my mother or children or friends in ways that create real meaning in the world and lead to positive outcomes. I can say to my mother that I’ll take dad to the PT appointment at 11:15, and it actually happens. This doesn’t mean our realities are equivalent or even similar.
If you say to my father, “want to come outside to take the dog to go potty?” He’s likely to ask which piece of property it is that needs surveying. The consequences of intersecting with his dementia in this way are many. If you were a friend of my dad’s in the before-time when he was a successful, and exquisitely sharp legal instrument able to leap complex real estate deals in a single bound, and then met him now, your reaction would be shock. I work with him every day, so there is no shock. There is only a long, slow, coming to terms. And daydreams: horrible, horrible imaginings.
Working with this beautiful man every day, I am forced to imagine myself in his condition. I imagine the little bundles of plaque slowly aggregating around my neurons, white, slime-like little snots that tighten and strangle the connections that give my life order and meaning. They move through neural tissue with malevolent purpose. They attack tiny defenseless capillaries without respite. For my father, the onslaught has been brutal. What remains is mostly perseverating echos of his legal career.
Perseverance is the circle, the loop, the unending circuit. It’s a groove that has no exit, that he can never leave. Perseverance is maddening. It also has a character that I have struggled all my life to adopt. Perseverance creates a kind of compulsion, a kind of dedication to an idea, or an action that will not quit. I’ve made pottery, hand-blown glass, paintings, sculptures, ill-conceived art installations. I’ve written short stories and even a book or two. I’ve remodeled, remolded, restored, repainted and repaired in countless iterations. I’ve never worked with such dedicated zeal as that which my perseverating, dementia-addled father brings to his completely hallucinogenic legal projects. His persistence is staggering in scale, and utterly horrifying.
Current best practices in caring for a dementia patient advises caregivers to not fight the surreality of behaviors. To go along with mental wanderings. Keep them safe. Don’t agitate. Don’t fight the nature of their reality. I’m all in for this. It’s clearly what he needs. It means living in a dream world. Who are the people involved in setting up the entertainment business? Just who is going to do the survey work on Bird island? Have we dealt with what the FBI want? What about the IRS? There are answers in the documents missing, missing, missing from the filing cabinet.
I pray that like my grandmother and now my father, if my fate is to wrestle amyloid proteins, my dementia would not leave me angry or dangerous. I hope, I pray, that if this becomes my fate, that because one of the things I’ve tried to dedicate my life to is making things, my family will be able to set up an easel in the corner and set out some acrylics and just leave me to make strange, otherworldly, perseverating paintings. This is the best possible imagining I can make: to see myself standing there, in front of an easel, hashing out my perseverance on canvas the way my father stands in front of the filing cabinet, sorting through documents, just sure there is a missing power of attorney or an incorrectly signed last will and testament.
The advantage, of course, is that paintings, unlike legal problems, don’t have to make sense. Paintings that make no sense are routinely celebrated and beloved. Think Kandinsky – whose project was to paint what music would look like. Think Newman – whose project was to recreate actual forms of thought in color fields. Think Dali – whose project was to explore dreamlike surreal landscapes of the mind.
Canvases will line the walls of my care facility. Nurses will all evaluate them seriously, giving sincere feedback. My children will replenish stocks of blank canvases and paints. When I start to forget to wash my brushes, a stockpile of cheap new ones will be requisitioned. Endless playlists of sad, male folk-singers will be queued and set to play for me. Lord Huron, Sufjan Stevens, Nick Drake. Toward the end, someone will have to help me operate a toilet. I will genially wear sweat pants and genuine-heartedly compare my feeble efforts to the gigantic amazingness of Matisse’s end-of-life cutout compositions. Grief and pain will be lessened because my grooves make something useful. I don’t have perceptible rendering skills as a painter, so my works will be expressive, Dubuffet hack-jobs. Objects and people roughly outlined.
My mind won’t be able to help me unbuckle a belt, but flashes of imagery will persist and pierce the deepest depths of the illness. Cold winter nights when there’s a ring around the moon. The improbability of a group of birds all turning together en masse. A single majestic dark crimson Japanese maple against the blue sky. Sunlight filtering dappled through forest canopy. A lover’s thigh curving into the cold winter bed sheet shadows. Distortions of shallow sun lines under water. And color. So much color. Colors swirled into colors. Made real. Unceasing phantasms of the darkest, at last loneliest, terrible journey made real.
References:
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