I try to put an order to my thoughts in order to write. Try very hard to remember my days. Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday. What happened on each of the days of my week? Without structure there is no shape. No shape to the days of my life. I write the date on the list I prepare every day for myself. The list that helps give structure to the day. I do this before I go to bed. Alzheimer’s is a memory disease, and the date is forgotten, and only to be remembered when I check my iPhone, and forgotten again.
I guess it doesn’t matter any longer. I’m not in a hurry to get anywhere. My life. The earth turning. Day turns to night and back to day again. Bored and depressed. Confused. Why has this happened? No more work life. No more classes to teach. No more friends to meet for dinner and a film. No more laughter. No more fun. Confusion and anxiety. Rinse and repeat. Why? Why? Why?
But there’s still a life to live. How to live it? Endless Lumosity games played, checking my scores. Trying to bring the scores back up to what they were a year and a half ago when I first started playing the games. I’m slower now. Sitting and waiting for the laundry to be dried in the dryer, otherwise I will forget it’s there, and there will be no clean underwear, no nightgown to put on, no tee shirts that are clean. Ruth will come today around 4:30pm. Rushing to write something. This is futile. Laurie, my dementia mentor, tells me to find some humor in this. She must be kidding. She has no idea how crazy I feel, how stressed I am in this descent to nothingness. There’s nothing funny about it. Nothing.
The senescence of cells in advancing Alzheimer’s causes the brain to atrophy and the body to wither. This is happening to me. I am 64 years old. This should not be happening to a 64 year old woman. 60 is supposed to be the new 40! I’m too young for this tyranny. Too young for the speed of this decline. I watch myself trying to detach but there is no way to detach. It’s called the long goodbye. That’s not my experience. For me it is a fast forward. The last chapters of my life were supposed to unfold. My story was supposed get richer and the tapestry of my life was supposed to reveal layers of meaning. I was going to complete the feature film I began as an American Fulbright to Poland! This was going to lead to other opportunities to make movies! I had three completed scripts! There were actors, art directors and producers involved. Then my reality changed. Suddenly I could no longer do what I had been doing. I began to forget who I was.
Everyone in my life fell away. I didn’t understand what was happening to me. I could no longer relate to my friends and they could not relate to me. Friends are now virtual friends who have a garden variety of dementia diagnosis. We meet on the computer in Zoom chats intended as support groups.
Alzheimer’s is an unraveling of the tapestry of my life. Everything has changed in three years, two years since the first diagnosis. A year and a half since the the second diagnosis, confirming a neurodegenerative disease with the pattern of Alzheimer’s. I had no idea then that I would be a rapid progresser. That this is a disease of progression, shaving away my life, my strength, my cognition and ability to be the independent, vivacious and strong woman I was. People with younger onset that progresses rapidly do not live very long. I know the reality. Pat Summit, the mighty women’s basketball coach diagnosed with Alzheimer’s at age 59 and dead at 64. So many others without the impressive fame, doctors, lawyers, writers, actors… Five years, seven years, three years, in some cases as little as 18 months. Gone. I sometimes say it’s like brain stoppage. Not knowing what to do, how to take care of myself, forgetting how to move around, what to do when I’m hungry, not getting hungry, not being able to sleep, not being able to breathe normally. The body breaks down without the motherboard, which is the brain.
People who read these words are saddened by my description of what the illness is doing to me. I told Laurie, my dementia mentor, that I see that I contain two sides to this disease. One side is like my late father, who didn’t have dementia, and lived to be almost 91. He was a fighter, and tough as nails until nearly the end of his life. Stricken with Parkinson’s, and heart disease, he kept going, even fighting the nurses in the emergency room when he went into cardiac arrest. My mother, on the other hand, who had a long descent into dementia in her late 70’s and into her late 80’s when she died at 87 with late stage dementia and pneumonia, was not inclined to fight what was happening to her. From her late 70’s on she lived in bed, getting up to eat a little something, and sleeping away her days. She would get up at night and pace the floor in the living room, and rant about my father, while he tried to sleep. She was crazy for a long long time. But she didn’t get Alzheimer’s in her early sixties. She didn’t decline until her later 70’s.
My drawing is a self portrait – me with an expression that speaks of my consternation. I drew it from a photograph, a selfie, that I took in the car as my husband drove us both to the beach. That was this past Saturday, August 25, 2018. The bird is supposed to be a robin red breast, who flew into my backyard, the previous day. I’ve enlarged him and invited him to sit on my shoulder in the picture. This is the product of my imagination. Here is the drawing again.
I have read that birds are spiritual harbingers, a person or thing that announces or signals the approach of another. The way this robin perched itself on the back fence, brought to mind my late father, Michael. With the birds arrival, I felt his presence. The robin stood there perched for a very long time, and it appeared to me that he was looking at me.
I felt my father was with me, reminding me that he is still present in spirit. That he is waiting for me. Protecting me, alerting me, in this strange journey I am on now. My friend Ruth sat beside me. I spoke Yiddish to the bird, as he flew to the ground and pecked at some plants. An outsider would surely have thought me mad, hearing me speak Yiddish to a bird, but Ruth is no outsider. She understands the madness the disease is creating. She tells me she is proud of me for doing as much as I do. Continuing to function, not giving into the disease completely.
My father is with me on one shoulder. I am not giving in. I have been fighting it because I have no choice.
This is Amanda, an art therapist I met last Friday at The Alzheimer’s Association. She met with a group of us and brought clay. My reaction to viscous art materials, even though I was an art teacher, is to not want to touch them. I’ve heard this happens to some children who have autism. I didn’t want the clay to get inside my nails or on my hands, but I did want to make something. I asked for a ball of clay and saran wrap and formed a little monstrous head. I’ve felt since the beginning of this “change”, that the regression into this disease, is like becoming a monster.
Amanda had us write about the piece we made. I wrote-
I am clay. I am dust. Once a baby, malleable, with infinite possibility. I am seeing my mother’s eyes. The orbs full of exotic vitality – longing. I am now seeing the vestiges of her being. Memory. Her voice. She calls to me, Minyala, in Yiddish. Her features now monkey like, transmuted in clay. I am that monkey, that chimpanzee. I am regressing into the primordial ooze. A piece of clay, I am unable to touch. It molds itself with the imperative to become something. An irrepressible thing. A defecated thought. Something ugly.
Amanda told me about a woman she works with who is 63 and was a fashion designer, and has had Alzheimer’s for ten years. She no longer speaks, but can sew, and they work on a tapestry together. She is ambulatory, and has a full time home health aide. I cringe at the thought of not being able to speak. But she can sew. How odd!
My husband was ready to take me home. We went down the elevator from the 22nd floor, and onto 41st Street. The building exits onto the library walk, the street leading up to The New York Public Libray. I snapped photos of the brass plaques inserted into the sidewalk.
Humpty Dumpty sat on a wall. Humpty Dumpty had a great fall. All the kings horses and all the kings men, couldn’t put Humpty Dumpty back together again.
Must be true. Information about anything is light. That’s why I write and share my wild and sad story. There is light in this darkness.
Then the walk to the Port Authority, through Bryant Park, and past a young homeless man sleeping on the sidewalk.
It being Friday, there was a long wait for the bus, with commuters standing on the unmoving escalator stairs.
I check on my phone app to see how much I walk. That day it was 3.6 miles. That equals 8,481 steps. I was exhausted, by the time I got home, but I think I went to Ruth’s apartment, after I ate. I have to remember to eat. I am getting very frail.
On Saturday, August 25th, my husband took us to the beach. I hadn’t been to the beach in over two years. He packed snacks and off we went. That’s when I got very nervous and agitated. I snapped a selfie and sent it to my daughter, who texted me saying, “Be in the moment. Nothing to fear but fear itself”.
Obstacles! As soon as we hit the highway, his car (however it does that) alerted him that he had a flat tire! I have known and felt that obstacles will be my undoing. but not this time. He is resourceful. He drove to a gas station and inquired where to fill his tire with air.
Onward to the beach, but first he wanted to go to Starbucks and I had to go to the bathroom! So we found a strip mall, and at the end, sure enough, there was a Starbucks. He bought me a sandwich and an orange juice, and I sat in the only upholstered chair available, while they heated the sandwich. An older man sat across from me listening to something, probably music through his blue earbuds. Oblivious to me, I snapped his picture. I’m the Alzheimer’s spy.
Back on the highway, I sometimes wonder if my husband would find his way if he didn’t have GPS. Probably not. We were going in the right direction, and headed towards Tinton Falls, which we would have to drive through to get to Belmar Beach.
Over the bridge and closer. I remembered loving the sea air, and the feeling of driving to the beach as we had done so often when the kids were young. We had rented a house at Seaside Heights and this felt like the way I felt so many years ago going there.
Finally there, he parked the car on a side street close to the beach. A gazebo and what looked like a wedding in the distance.
We sat on a bench on the boardwalk and watched para-sailers who were attached to a motorboat, sail through the air. Parasailing is a recreational activity where a person is towed behind a vehicle (usually a boat) while attached to a specially designed parachute, known as a parasail. I marveled at their bravery and tried to imagine what they felt like.
It cost $16 for both of us to get onto the beach. It is free after 6pm and it was almost 6 o’clock. I did not have a bathing suit on, couldn’t possibly put one on. I wore my old beige pedal pushers and a pink and white tie dye tee shirt. On my feet were the black fit flops I used to wear before I got sick. I was afraid of walking on the sand, afraid of getting sand on my feet. Didn’t know how it would feel to walk on the sand. There was a blue plastic sand cover graciously provided to cover the sand that led partway to the shoreline. 6 o’clock came and we walked out onto the blue cover. No way to avoid getting sand on my feet. My goal was to put my feet in the water. I wanted to feel the ocean water on my feet. I rolled up my pants and walked up to the edge of the water and the wave came in and the water lapped at my feet. This is crazy I know, to be so afraid of the water, getting sand on my feet, knowing that with my feet wet, the sand would stick. This was immersion in my fear. Forcing myself to do it. My husband put a towel on the sand, a few yards back and I sat down, and took a photo of my feet. Ridiculous and absurd, I felt victorious for simply having waded into the shallow wave, and walking on the sand.
The trip home. Clouds and a glorious sky. I fell asleep in the car.
It’s rare for me to fall asleep in the day. It’s a normal response for normal people after a trip to the beach. But I’m not normal. For me sleep now has been the only escape from this disease, and I have very little of it. I usually sleep around four hours straight and lay in bed too exhausted to arise, for several hours. The car must have lulled me, and since I often chatter non stop and it’s a big distraction for my husband’s driving, it’s good I fell asleep. I woke and it was nighttime. Still in the car, but close to home. I looked up and saw a full moon and tried to photograph it. The results look like something from another planet.
I so want to undo the effects of Alzheimer’s and the insanity it is causing in me. I am trying to hold onto everything that is real and precious now.