Vanishing in Plain Sight
A Journey into Alzheimer's
When John was diagnosed five years ago he ignored the bad news. He never said he had Alzheimer's, and I think the only time he wrote it down was after his neurologist asked him to make a note of it and spelled it for him. Would the John of twenty years ago be embarrassed by what I have revealed here? At first, yes and he would probably have been angry. Then the real John would step back and say, 'Okay, if this will help people talk about Alzheimer's." He could have spent his life pursuing a big money career, but he chose to give time and in-depth attention to nonprofit organizations. Sometimes he was at a nonprofit during the week and at his office on weekends.
Although I have now included pictures that move through John's death, I am in the process of going back to finish images I had not completed. Also, I am still having ideas for more photographs. I cannot know exactly what he saw in his mind. All I can do is imagine what I think could have been going on and leave it as a starting point to talk about a dreadful disease.
Alzheimer's Note 2016
My husband John died of Alzheimer's on December 8, 2016. When he left home three years ago I began to find the little piles of notes he left behind. They were supposed to remind him of everything from the names of friends to the places we went on our honeymoon. As I photographed the stacks and individual notes, I began to imagine how things might have changed in his mind as he lost the ability to read and comprehend what the notes were to him. As his Alzheimer's progressed I began to imagine what his mind saw in many situations. Sometimes he seemed to be in the middle of a dream, at others he was in a waking rage. This project has expanded to include the overabundance of office supplies that John purchased, the houseflies that drove him wild, his hallucinations, his fears, other aspects of a world he was gradually leaving behind, and his changing perceptions of our family.
Note Stack 2015
Notes and Note Stacks
Tom and Susan was the first photograph that I made in this body of work. That little stack of notes made me realize how much John feared forgetting even his closest friends. Along with several single images I have included one note-stack sequence imagining the disappearance of information in John's mind: Baseball, Hot Dog, Airplane. Those are the three words John's doctor would ask him to remember for 20 minutes at a time. From the stash of his notes, I have made more sequences, and I still see others that I want to experiment with.
Tom and Susan 2015
Tom and Susan 2015
Baseball, Hot Dog, Airplane 2015
Chat Tax 2016
Last Writing 2015
John wanted to be sure he had enough office supplies, but since he forgot what he had bought he was always buying more. As his illness progressed, John would not pick up a pen to write or even scribble. I've included two sequences of office supplies: binder clips scattered and paper tags new in their box. Gradually binder clips and tags became foreign objects.
Paper Tags 2015
At the beginning of his last year, John recognized only our son and daughter, his brother, our dog Rosie, and me (although he often confused our daughter and me). Sometimes, when he became agitated and fearful he no longer knew us and could be afraid of us. I have included two sequences, one of Rosie and one of me.
Self Portrait 2016
States of Mind
In the later stages of his illness, John went through periods of extremes, traveling from benign sweetness to extreme rage. Polarity came out of my experience of these extremes.
Polarity I 2016
Alzheimer's patients are often asked to draw the face of a clock. As the disease progressed John's mental image of a clock blurred and shattered. It seemed as though any attempt to put it together again would only muddle it more.
Even when John was still at home sometimes he seemed to bat things away that would creep into the side of his vision. At other times he would keep talking only about colors. His language became more and more limited, but he continued to express what was happening to him visually even if mostly by gestures. At least, this meant that we were still having some sort of conversation.
Nattering Things 2016
The Center Cannot Hold 2016
Did John feel as though his world was spinning away from the center of his being?
When John was still at home he started to fear water. It was as though the shower was attacking him with hundreds of knives.
Until about two years before he died, John never liked to have juice instead of water with his meals. Gradually, when offered both, he began to choose cranberry juice most of the time. On picking up a water glass, with or without water in it, he would bring it to his lips slowly and very hesitantly take one sip before setting it down. Did the water become invisible?
Water Where? 2016
The sunrise shined into John's room to a degree that could waken many. Instead of normal shades or curtains, John insisted on total blackout curtains lined with a special fabric. As a result, his room could be very dark even in the middle of the day. If he stayed in darkness during the day he became moody and sometimes angry. It became increasingly important to get him out of his room and into the day. ·
Sunrise End 2017
Perhaps John was looking out the window at the sea, maybe remembering bits of sails and flickers of light on the water. Maybe it was the intense gashes of light on the ocean that could transform smiling relaxation to rage that came on with the speed of storm darkness over the sea.
Storm Warning 2017
When rage built rapidly, it focused momentarily, turned inward and then slowly spun and twisted to a conclusion. Occasionally it spun out of control resulting in restraint and a trip to a medical facility.
Rage 1 2016
One day when John was in an overcrowded facility with cement floors that echoed the cries of distressed patients, a man who was just visiting another patient stopped by his bed in the hallway. The man said he had been in the U.S. Navy. John lit up and indicated he had too. He managed to say that he never got seasick even when everyone else did. Most of the stories were gone, but I was glad to see him enjoy a shred of a memory.
John's attention flickered from place to person to thing to hallucination. His eyes seemed to glance over a page but moved on before there was any recognition of text, only to be attracted by a glimmer of color real or perhaps imagined.
Although John spent his career in the financial world, after he retired his personal finances began to be affected by his illness. He started to invest in gold at a good time, but later he became obsessed with the idea of gold and held onto investments until they were worth far less than he paid for them. The children and I became aware of this but felt powerless to stop it. Then we noticed a misplaced decimal point on a check. At that point, we hid the checkbooks and started managing as much as we could.
A responsible and successful money manager· when he was well, John had a mischevious gambler component in his personality that he kept hidden most of the time. He loved games and always pushed to win. John was very attached to his digital watch and despite his large fingers operated the keypad with skill and speed. While he was still at home he longed for an iPhone, but he could no longer even tap out a phone number. We stopped pulling out our devices in front of him knowing they triggered rage.
Digital Watch 2018
For fifty years we lived in an old summer house that once had beautiful gardens. Nature had taken over and we became used to wild grasses, raspberry bushes and a vast array of weeds. In 2008 we began to tame our landscape and plant flowers. Although he had lost his sense of smell, for a while John enjoyed the flowers. Gradually he began to ignore them. Later he would sometimes move away from them or become agitated if I brought them close. Is it possible he did not know if bright flowers would feel loft or burn?
Peopny Not 2017
A visitor with flowers was greeted with a smile, a blank face or an expletive. When a visit was good I wondered if John was seeing fragments of a person or references to past visual pleasure. At one point he had a storehouse of paintings and other art in his mind. Did fragments come forth occasionally? were bits and pieces of all the people John knew still hanging on in his brain? When he was smiling what was he seeing?
On numerous occasions John became violent. Usually, the event was caused by family or staff attempting to get him clean. Previously I mentioned his fear of water, particularly water coming from a shower head. Sometimes medication could take the edge off, but usually, that meant a stay in the hospital. Fortunately, after several bad experiences, we found caring people in one hospital unit who worked with John's complicated mix of medications to calm things without making him sleep most of the time. He returned to that hospital many times and we are grateful to the staff for their caring and expertise.
We learned that anger and violence, common issues for Alzheimer's patients, are problems that staff in care facilities are often not trained to handle. We did encounter a couple of people who could get John to cooperate, but just as things were settling down the whole staff of his care facility changed. I still don't know why. Also, there are regulations limiting the administration of medications in care facilities so that patients won't be over-medicated just to make them easily manageable. Alzheimer's patients may need frequent changes in medications to keep up with their ever-changing brains. At first, I thought that as John's wife surely I could calm him in these very bad situations. Big mistake. Alzheimer's changes everything. I now understand why the problem patients are sometimes shifted from place to place with no one willing or able to deal with them.
For John buttons and zippers became an enemy to be overcome by sheer force. In extreme instances, twisted fabric was accompanied by expletives that continued even after help arrived. Somehow the map governing fasteners was lost.
Frans Franken II
Oil on Copper
At first, I had to drag John through art museums, but as soon as he started to look carefully and read about art he was hooked. He became a knowledgeable self-taught collector. Although we could never be big collectors, we did find a few treasures. John's favorite was a small Flemish painting on copper by Frans Franken II that is both a still life and an orgy. Gradually John stopped pausing to look at the painting. I like to think that bits of it could resonate once in a while before it disappeared from him.
Frans Franken II 2017
John loved music, particularly classical and country. Early on after his diagnosis, I was told that his perception of music might last longer than anything else. I noticed that while he was still at home he began to lose interest in music at about the same time that he began to ignore the visual art that we had collected together. He no longer tapped his foot to Patsy Cline and he ignored the Tang horse he had been so pleased to find. We tried various setups to make it easy for him to listen. Nothing worked. It seemed as though whatever was eating his brain attacked music and visual art at about the same time. Now I realize how different Alzheimer's is for each individual. Each pattern of destruction is as different as one ink spatter from the next.
Do all remembered stories vanish at once or do parts of some remain? If any remain would it be fragments of a cross country trip in college supported by selling frisbees or a shred of a deep myth of Persophone? Were the bits and pieces memories that made John happy, thoughts that made him sad or irritants that made him angry? Stories are a huge part of what it is to be human. What is it like to forget the stories you knew while being unable to understand new ones?
This photograph is of a little reading light with a black headband that John used extensively. He was a poor sleeper and often read at night. For years he devoured novels. I should have suspected something was wrong about twelve years ago when he stopped reading novels. When I asked him why, he said he had too much business reading to do. I usually found him doing sudoku. Perhaps he could no longer orient himself in the world of a novel.
In his long career as a financial manager, John used a special ruler with a red grid to work on tock charts. The time came when he left the ruler on his desk; the red lines faded and the ruler turned yellow. Using a fresh ruler in this photograph was no problem because of our ever-present wealth of office supplies. As John's Alzheimer's progressed the charts on is computer screens became clouded and he no longer understood the software he needed to use. I imagine he could still see certain visual elements but they gradually became meaningless.
When we drove into Boston for medical appointments I wondered what John was seeing. Gradually he could no longer recognize landmarks or buildings he had been familiar with. I imagined his city stripped back to its building elements as his brain eroded.
At times John would fight off impediments that were invisible to us. About a year after he left home he started to break and lose his glasses until we could no longer find a pair. We could not get him a new pair because his prescription was out of date and we did not dare to take him to an ophthalmologist. Most of the time he could walk around without bumping into things and he could see well enough to eat. Sometimes he could recognize family or a caregiver although voice and touch may also have been clues. Extreme anger is sometimes called a blind rage. The expression describes John's extreme anger that caused him to strike out at everyone, everything and the air around him.
The Edge of Nothing
Did John go from a colorful if incomprehensible world to one of whiteout or darkness? When it became almost impossible for him to make sense with words I wondered if he was seeing a world of colors or if sometimes all went to white or black. Most of the time he did have some spatial awareness, enough to walk around with encouragement. Eating became a messy affair, but he could feed himself until the last couple of months.
The Edge of Nothing 2017
Four years before John died I saw the first scans of his brain. There were enlarged black areas where there was nothing. The core of his being was gradually going dark.
Sometimes John loved a bright summer day outside and at others, he seemed to fear the bright light would reveal something bad. At night artificial light gave some comfort, but it also revealed the possibility of darkness beyond it and opened pathways for threats, perhaps something that lurked in the dark of the sea. While he was at home he constantly heard the sea just down the hill from the house.
Gradually John's relationship to light and darkness changed. After he obtained extreme darkening shades for his bedroom, he put opaque shades in his office shutting our the glorious view of the ocean. Sometimes these two rooms were extraordinarily bright, but he kept the shades drawn all the time. When he went outside he did not seem to mind the intense light, but in the late afternoon, as the natural light faded he often became agitated and grumpy. When Alzheimer's patients do this it is referred to as sundowning. It seems darkness can bring both peace and fear.
Darkness Brings 2016
In the late stages of Alzheimer's, there may be pain that the patient cannot communicate. At eighty John's skin seemed more that of someone ninety-five. It was very thin and often developed sore spots. There also seemed to be a pain within that was never identified, even when he was checked out at the hospital.
The Incommunicable 2017
Messenger of Absence 2017
Even in the last few days, John was aware of the people around him. He did not know any of us or the hospice staff. Were we shadows? Were we vague faces? Only on the last day when he closed his eyes but kept breathing did he stop responding completely.
What? Where? 2017
Throughout his illness, John remained physically strong. He never had to use a walker and seldom fell. About three weeks before he died he stopped eating except for an occasional bite of chocolate ice cream. Once he stopped trying to get out of bed we knew his brain had entered the last stage of collapse.
Lost Signals 2016
As he died one of John's eyes flickered open and both iris and pupil were black. Had the iris disappeared allowing a flood of light in?