A New Year 5779

Suddenly Mad- Shana Tova imageRosh Hashanah has arrived, and it’s 5779 in the Jewish calendar. A lot has happened since last year at this time, but because of progression of my Alzheimer’s, I do not remember everything. I take lots of photographs and remember what was happening when I took them. This helps me remember more and helps me remember what happened in certain months. I looked at photographs from September of last year, and thought about what I felt like around Rosh Hashanah last year. I had resigned from my position as chair of the art and art history department. I was very sad. I didn’t know what having Alzheimer’s would be like as I progressed and I knew that the disease is about progression. I had just started the blog. I was researching and researching. I was already having problems getting dressed. My dementia mentor Laurie suggested I put my clothes on a hanger the night before. I remember that I was very lonely. I spent the entire summer in my house. I hardly went out. My son and his wife and our baby granddaughter visited and we drove to their home a few times. My daughter slept over a few times. My husband did not understand my lack of motivation.  All of my friends had abandoned me when the diagnosis of Alzheimer’s was made. People I used to spend a lot of time with disappeared. I had few places to go and going to synagogue was an attempt to reconnect, to rejoin the community. I knew I would be telling people I have this disease. I didn’t know what to expect. Would I be rejected by the Jewish community? How would I as a person with impairments be able to interact? I told my former film editor, Harry. He confided in me that his late father had had Alzheimer’s in his 70’s. He began visiting me and suggested I get a home health aide.

I do remember that last year at this time, I met Jeanne in the park as I was on route to the synagogue to observe this holiday. I was sitting on a bench, a little exhausted from pushing myself to go. She and I were only acquaintances then. She had donated to my campaign to raise funds for my Holocaust film documentary Back to Gombin (which Harry had edited), many years ago and I never forgot that. I knew intrinsically that she is a good person. She believed in my work then and as she walked past me in the park, I called out to her. We walked together, and I told her I wasn’t well. I didn’t tell her that I had been diagnosed with Alzheimer’s at that time. She told me she had also not been well. That was beginning of our relationship, although I don’t  remember if I told her I had Alzheimer’s that night. I do remember she walked me home. By November, Jeanne was visiting me once a week and bringing lunch. She told me about her own mother who had had a stroke in her mid 70’s, and who she said had dementia.

This past year I have experienced a slowing down of my brain and body. So much confusion. So much depression. Yet I’ve kept pushing myself. I have participated in many zoom chats with people who have been diagnosed with Lewy bodies, vascular dementia, fronto temperol lobar degeneration, and the very early signs of Alzheimer’s. I’ve noticed that I’m progressing quickly. It has been apparent to me that I am progressing faster than others with the disease. It’s been a terrifying year, a heroic year, a year in which I realize what the process of what people call The Long Goodbye is. Alzheimer’s is a cruel and tragic disease. It’s often referred to as the “Long Goodbye” because it doesn’t hit you all at once. You steadily fade away and, despite having the appearance of normalcy to the outside world, your mind is being ravaged by this awful disease.

I try very hard to fight this unbeatable foe. I know that it’s a losing battle, but for the sake of my dignity, I do what I can to keep pushing, stay socially connected and write this blog. I can’t believe that I, who was so involved with memory in my work as a filmmaker, is living a disease in which my memory is being dismantled and erased. My film Back to Gombin  is a part of my legacy and I want to be remembered remembering history https://vimeo.com/124443430

Suddenly Mad- Still Reaching DrawingThe drawing was made after Ruth (Jeanne’s sister who has been spending many days and nights with me since May) and I went up to Steven’s Institute’s campus last Tuesday, both of us pushing ourselves up the hill on 8th Street near my home, she with her walker, and me trudging and a bit unbalanced. Upon the sprawling campus that overlooks the Manhattan waterfront, is a larger than life sized sculpture by Anna Hyatt Huntington called The Torch Bearers. It shows a dying man giving a torch (symbol of knowledge) to a young man on a horse, representing the transmission of Western culture and civilization through history. For me, the metaphor is that I am transmitting my knowledge, my torch, as it were, by writing about my experiences as I live through this long goodbye.

Last year it was not hard to climb this hill. I would do it by myself. Last year I was much stronger. Physically stronger. My cognition has changed along with my strength. Last year, I was able to hold a thought and wrote the blog in a linear manner. One subject followed by lots of insights and memories. Now I see that I flit around between the past and the present. Like the tasks I am unable to complete, my mind is having trouble finding an anchor. But anchor myself I must. Back to the present, at least the days around the present time. Rosh Hashanah 5779, September 2018. The present remains the anchor, lest I fall off the cliff and remain in the past.

Jeanne at synagogue Rosh Hashanah.JPG

This past Sunday September 9, Jeanne arranged to take me to the synagogue for Erev Rosh Hashanah, the Jewish New Year. She is a member of the chorus, and I sat next to her, as members of the synagogue commemorated this time in which one year passes to the next. The rabbi spoke eloquently as the sun began to set. He said it was not officially 5779 until sundown- that we were in the twilight time where one year passes from one to the next. I experience what is called sundowning when the sun sets and utter darkness appears. I get agitated and sometimes need to pace. I sat there and watched through the open windows as it got darker. The chorus sang Hebrew songs. I tried to appear socially normal, but inside I felt awkward and unsettled. I tried to joke with a man, a legal scholar I know, who has written about stopping eating and drinking to hasten death, in cases of dementia. Several people I know came up to me and said hello. I recognized all of them and remembered their names. Jaeli, a former student reminded me that she had studied art history with me as a 10th grader. I didn’t remember that. She was older but still childlike, a certain blush of youth fading in her face at 17. Everyone changes incrementally as they age, but it’s most evident when children are turning into adults. I saw the mother of another former student. Her name is Samantha and she’s a woman who has been a dancer, who I’d had many conversations with over the years. I said hello, and sensed a great reticence in her to even speak to me. It made me sad. I wanted to go over to her and say, I’m still the same person, sort of. Don’t treat me differently. A lot of people are afraid of Alzheimer’s. They don’t know how to deal with someone who has it that is suddenly somewhat different than the person they used to know.

For me simply showing up, getting there that night was a big deal. It was raining, and Jeanne and I walked home under umbrellas after the service. I have been reluctant to go out in the rain. The experience of getting wet, getting water on my glasses, pushing myself to walk distances, had to be overcome that night. We passed a dog with one hind leg missing. He gave me some inspiration to plod through it. The experience of walking has changed and I am definitely getting weaker. I am pushing myself. My rapid physical decline is startling to me.

I didn’t think I could do it, but the next day (yesterday which was Monday Sept. 10), I asked Ruth to walk with me to hear the shofar blow at synagogue and to accompany me to the waterfront where the rabbi conducted a service for Tashlich. On the first day of Rosh Hashanah, Jews traditionally proceed to a body of running water, preferably one containing fish, and symbolically cast off their sins. The ceremony includes reading the source passage for the practice, the last verses from the prophet Micah (7:19), “He will take us back in love; He will cover up our iniquities. You will cast all their sins into the depths of the sea.” It was important to me hear the shofar blow and I knew that this was the only day on Rosh Hashanah I would be able to hear it. Ruth who was born a Jew, with a Jewish mother and father, and years of Hebrew school, is now a practicing Jehovah’s Witness. She would not come inside the building and would not come upstairs to the sanctuary. I was concerned that I would have no one to sit with, but Louise, who I’ve known for years, sat next to me and offered me the Mahzor, the prayer book used on the High Holy days, Rosh Hashanah and Yom Kippur. There is always help within the sanctuary. There is always someone to assist. After the service, I met Ruth downstairs, and opened my umbrella, and we followed the rabbi and the group of congregants to the waterfront, Pier A. The mayor who is a Sufi was there grandstanding, and it started to rain harder. The rabbi directed us to stand under a pavilion nearer to the river, and he started to tell a story about a the land of Eden and likened it to the town we are living in. Then he recited the prayers for Tashlich and I took the bread from the plastic bag and crumpled it and threw it into the Hudson river. I wanted to throw away my sins. I know that my illness has impacted my husband, and my children. My behavior and unfiltered things I’ve said have been hurtful. There are stains on my carpet from the time my husband spilled his coffee during a particularly bad fight. I wanted to throw away the sins, not just mine, but all the bad thoughts I’ve harbored. A year ago I thought of throwing myself in this river. Drowning myself so that I don’t have to live through the stages of this disease. Now I was casting bread on the water. Throwing away my sins in the form of crumpled slices of whole wheat bread. Birds flew and swooped down and ate it. If my faith was restored, it was in seeing the continuity of life. I realize that my faith comes from within. The rituals are reminders that G-d is with me. That’s why I needed to hear the sound of the shofar, to throw bread on the water. To hear the sweet sounds of Hebrew prayers, to read the words in the Mahzor. We are all just passing through life. We are all living in the bosom of G-d. I wonder why some souls have to suffer more than others. I’ve pondered if it’s been my karma to suffer more. Some souls are like asteroids or meteors, burning brightly as they sparked the sky briefly. I’ve been so angry that my time is passed, that this disease will rob me and my family of so many years of togetherness, that my very being has become a burden on them. And then I see that there is still a life to be lived, and stories to tell. I am not gone yet. It’s Rosh Hashanah 5779 and I’ve made it so far. Not whole, but holy.

Ruth and I made our way back, walking from Pier A down the path I used to ride my bike on, in the days when I was so strong and able. For a moment I was disoriented, confused about how to get back home, but it came back to me that we should just walk to the end of the path (about 4 long blocks) and it would take us to 4th Street where we would cross the street and walk a block up, cross again, and walk through Stevens park, and then up to Hudson Street.  We walked up Hudson Street and took a left on 8th street and waited for the light to get across Washington street and down the hill on 8th street and reached my house. Inside I took off my rain coat and hung up my wet umbrella and sorted out my purse which I always hang up on the hook of the etager with a mirror, and took out my phone, which I try to always have with me. The meal my husband left for me was sitting on the kitchen island. He was not home, having gone to his appointment with the physical therapist. He refused to go with me to the synagogue, despite my pleas that this might be the last time I was able to attend for Rosh Hashanah. Although he’s a Jew he’s an atheist or agnostic and has rarely been inclined to go with me to shul, even when I was well. I usually went by myself. but I felt this was a time when he should have gone with me. He has removed himself from me in so many ways since this disease has changed me. This is why Ruth came with me although it was odd that she wouldn’t come inside. I have to forgive her. It’s the imperative of the individual to make their own choices. I have to forgive him. I do not want to plummet into the cycle of sinful and angry thoughts. I am alone with this disease, but I have support. He can only do what he does. I will aim for peace no matter what. It does no good being angry. I’ve said it before and will say it again. This is a time to let go. Love will prevail if I am able to stay seated in my faith that G-d will carry me home.

Tashlich ceremony with rabbi - Pier A.JPG

 

 

 

Life’s a Beach!

Suddenly Mad- Drawing the visitationI 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.

Suddenly Mad- Drawing the visitation

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.

Suddenly Mad- Robin red breast visitation 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.

Suddenly Mad- Amanda with clay art therapist Alz AssnThis 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.

Suddenly Mad- my clay monstrosity Alz Assn

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.

Suddenly Mad- Humpty Dumpty quote Lewis Carol (library walk)

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.

Suddenly Mad- Information in itself about anything is light- Tom Stoppard quote - library walk

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.

Suddenly Mad- “They ask me to remember their memories...Lucille Clifton - library walkThen 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.

Suddenly Mad- Port Authority escalator with people waiting for the bus

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.

Suddenly Mad- Free air to fill the tires

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.

Suddenly Mad- Starbucks on the wayBack 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.

Suddenly Mad- on route to the beach

Suddenly Mad- bridge crossing to the 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.

Suddenly Mad- Gazebo at the beachFinally there, he parked the car on a side street close to the beach. A gazebo and what looked like a wedding in the distance.

Suddenly Mad- Taylor Pavillion Belmar beachSuddenly Mad- boardwalk Belmar beachSuddenly Mad- Belmar Beach

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.

Suddenly Mad- paragliders 2Suddenly Mad- paragliders 1Suddenly Mad- paragliders 3

Suddenly Mad- Belmar beach 2 (with the blue plastic walkway)Suddenly Mad- Belmar beach with umbrellasIt 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.

Suddenly Mad- my feet in the sand after I stepped into the waterThe trip home. Clouds and a glorious sky.  I fell asleep in the car.Suddenly Mad- Sky returning home

Suddenly Mad- highway to the beachIt’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.

Suddenly Mad- full moon weird shot from the highway

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.

 

 

 

Free Fall

Suddenly Mad- Free Fall full drawingThe way that I have been living is in a kind of free fall. I don’t have much memory of the order of my days. I’m reliant on my iPhone calendar and a list I write every night very late before bed for the next day. This free fall is a process. A disordered order. While I really have no control over how I progress in Alzheimer’s, by writing about it, and drawing and taking photographs, it keeps me from falling too fast. It a kind of stop motion film of this life I have now, and a container of my feelings about it. Snapshots of it as I fall down the rabbit hole of this disease. I want you to know what I notice. I invite you to share in this strange journey with me.

I’m learning that each person who has it experiences it differently. I’ve heard this referred to as the snowflake theory. There are fast and slow progressers. Younger people who get it usually progress faster. I have progressed a great deal in the past year. At this point my walking is still in check. I am ambulatory, but it’s not like walking used to be. It’s a lumbering sort of walk, or at least that’s what it feels like. I plan every move I make and it’s like I am watching myself from outside and inside simultaneously. Planning walking is ridiculous, but I now have to. When I go out, the streets are both familiar and new. When I went for a walk with my husband this past weekend, and we turned onto a different street, I knew where I was, when moments before the terrain looked unfamiliar. Each time it’s a conquest of small obstacles, getting where I’m going. I haven’t been going out alone much anymore. I know my husband interprets this as anxiety. It’s not only that. It’s that my experience every day is new. How my legs will move, how the street will meet me, who will be there – moms pushing babies in carriages, bicycles coming out of nowhere, crossing the street, avoiding cars, road construction on the main street, and how to maneuver around that. But I carry on, with a routine. Monday there is usually my appointment with my therapist Pamela at 5 which is up the street from my house. This forces me out, to be accountable to her and to myself. It’s the place I can discuss what has been going on, what my fears are, how I am handling things. She’ll be away for the next two weeks. That entails more planning. What will I be doing? I guess I’ll be hanging out with Ruth playing 10 card Gin Rummy or Scrabble. Maybe just walking around this neighborhood. If I am able to. Ruth walks with a walker, and I am slow, so we kind of meet in the middle. Different kinds of decline, both of us slower than what we were, but for me this decline is new and for her it’s been this way for a long while. Cars stop for her more readily, because of the walker. I appear more normal, but I’m not. My impairment just doesn’t show as readily.

The last time I wrote it was Thursday August 9. The weather is changing and getting cooler and I get confused about what to wear. Staying inside makes it easier. I am distressed about this. My aim has been to keep going! I am afraid to go out when it rains. How will I deal with the colder weather? Will I be able to get my jacket on myself? Will I be able to deal with sweaters and layering, and removing clothes? Will I still be able to visit Ruth when there is snow on the ground? Will I be able to pull on the shearling lined boots I used in the winter? Will I know how to do this alone?

There are people rooting for me to keep going. Yet my body and brain are telling me to stay inside. I am pushing against this. A body in motion stays in motion. A body at rest stays at rest. There will be less to experience if I don’t go out. There will be nothing to write about. No one to see. I will withdraw more. So no, I have to continue to push.

Although I was afraid it would rain last Friday, and felt too weak to manage the trip on the PATH train to The Rubin Museum alone or with my husband, I wanted very much to go. So I pushed early to be ready to go. He was reluctant to take me in the car. It’s a hassle for him and parking is costly, but he agreed and off we went.

Suddenly Mad- Free Fall in the car to Rubin on FridayThis is the view from inside our car. I don’t understand why it’s getting harder to just go by PATH. Why am I getting weaker? I want to maintain my independence. I still know the route, but it’s a global weakness I feel in my body and brain.

My husband conveniently parked right across the street from the museum. The familiarity of that place is a landmark for me now. None of the usual suspects were there yet, but within moments they arrived. I sat at the end of the long table. My husband went to sit further down the table, and I ended up sitting next to Scott, who I’ve seen many times now, here and also at The Metropolitan Museum access program when I went last month with Jeanne. While I know he has been diagnosed, I see that he has not progressed like I have. He was diagnosed with Alzheimer’s five years ago. He’s a slow progresser, if this is the disease he has. He says his girlfriend doesn’t believe he has it. Yet his neurologist at one of the largest teaching hospitals in New York says he does, so I have to assume he’s had the conclusive imaging.  He told me that when this first happened he was with patients, and blacked out. That’s how it began for him. He stopped working. I assume he had long term care and excellent medical insurance. He lives in an apartment near Central Park. In other words, Scott is well off enough to coast. That’s what it seems he’s been doing since his diagnosis. Coasting. He does not seem at all anxious or stressed out. He told me he has no trouble taking a shower, no trouble getting dressed. He says he just goes to his drawers or closet to grab his clothes after his shower. I know that the instrumental activities of daily living that are impacted even in early Alzheimer’s consist of activities such as preparing meals, performing household chores and repairs, driving or using public transportation, shopping for clothes or food and handling the finances. Scott has no trouble with these, or so he says. I have to believe him because he lives alone. He is able to get his own food, has told me he takes the subway. In many ways he’s like a normal person. Yet when he speaks it’s obvious to me he has a hard time getting his thoughts focused and delivering all the words. I described to him, how I have to push myself to shower, how the steps of taking a shower and drying myself and getting dressed are so hard for me. It seems to me that Scott’s major problems are in forgetting some words, having a harder time remembering everything he wants to say. He has the classical issues of mild cognitive impairment with some memory loss. Things come back to him though. When I met him months ago he told me that he lost his wife to cancer (around ten years ago). She was in her mid fifties. I asked him about her on Friday as we stood among the Buddhist sculptures on the third floor, and he said she was a brilliant scientist and spoke many languages. Then I asked him what her name was. He couldn’t remember. I told him it would come back to him. About five minutes later he walked up to me, and said her name was Janet. There is certainly something amnestic going on there, but a very very slow progression if it’s Alz. Progression in Alzheimer’s means the loss of instrumental activities of daily living. It’s obvious to me that while we’re both kind of in a free fall, I am falling much faster. I asked him about his morning routine. He told me he gets up at 6am, just like he used to when he worked. Scott had been a plastic surgeon, and is 65, a year older than me. He said his routine is to shower and dress every day, eat something like a breakfast bar, and watch Bloomberg on TV. (Later that day my husband told me he had talked with his part time companion, a young woman who’s mother in law has dementia, and she said when she came into his apartment, the burner on the stove was left on low and Scott was in the living room watching TV. Amnestic symptoms. I am never oblivious to things like that). He told me that he is not concerned about dying. He has no children, his sisters live far away. His mother who lives in Florida is old. He does not feel concerned about his life. He is very laissez faire. Just lives each day. But does he have Alzheimer’s? He stood across from me listening to my saga and his nose was running. He didn’t seem to mind. He doesn’t seem conscious that anything is wrong with him. His cell phone rang. He grabbed it from his pocket and answered. It was his companion downstairs letting him know he was there to go home with him. That was a changing of the guard of companions. The woman left and the man came. Scott and I walked down the stairs. For him this was easy. For me it required focus and concentration to take the steps down. My physical reality is changed.

Suddenly Mad- Free Fall Scott Zevon Drawing detail.JPG

The experience of going to the program at Rubin is important for seeing the art, and recognition of others and social connection, but there are few besides Scott to connect with who have dementia. I usually end up talking to the docents. Those who show up that are further progressed are not able to have a conversation. A cheerful old man  around 85 – 90 years old keeps repeating, “I’ve been to the Temple of the Tooth”, every time we look at one of the artworks and the word “stupa” (which is an enclosed temple that people circumambulate around as they meditate and pray) is mentioned. At this point I’ve heard him say it a dozen times. We went to the second floor, and the folding  stools were distributed, and we walked over to the end of the gallery with Himalayan art. It’s when I come home and look at the photographs, that I remember that Buddhism is about non attachment, and letting go. It’s when I have a chance to consider the meaning of the artworks that I understand that letting go means accepting my decline, accepting my triumphs, accepting every day as it comes.

Suddenly Mad- Free Fall at Rubin going to look at the art

Suddenly Mad- Free Fall Buddha Shakyamuni.JPGBuddha Shakyamuni with Sixteen Arhats, painting on cloth from Tibet 15th century

Through these teachings, Buddha Shakyumani showed the way that leads all beings to the experience of awakening and liberation from samsara (transmigration, karmic cycle, reincarnation, cycle of aimless drifting, wandering or mundane existence). This demonstrates his limitless compassion and loving-kindness towards all beings who are looking for liberation and freedom from the realms of samsaric existences. He is surrounded by Arhats who are perfected people who have gained insight into the true nature of existence and have achieved nirvana (spiritual enlightenment). The Arhat having freed himself from the bonds of desire will not be reborn.

Suddenly Mad- Free Fall Drawing detail Wayne and me.JPGI see the sadness in his eyes. I know that he cannot understand the insidious nature of losing me while I am still here. He sees me suffer and he suffers too. He is my caregiver now.  He is here with me in my time of need, making sure I have a home and food and care. Things are not going to get better. My attachment to him now is childlike. Alzheimer’s is making me more childlike and dependent. I was always independent and then this happened. Our love needs to be a love with letting go. I’m the one in a free fall. No net can catch me. But he is here holding on to me. This is the paradoxical push pull of this disease.

Suddenly Mad- Free Fall - Tara of the five goddesses (Bodhisattva).JPGTara a Female Deity, Tibet, 18th century

Tara is a meditation deity worshiped by practitioners of the Tibetan branch of Vajrayana Buddhism to develop certain inner qualities and to understand outer, inner and secret teachings such as compassion, loving-kindness, and emptiness. According to Buddhist tradition, Tara was born out of the tears of compassion of the bodhisattva Avalokiteshvara. It is said that he wept as he looked upon the world of suffering beings, and his tears formed a lake in which a lotus sprung up. When the lotus opened, the goddess Tara was revealed.

Suddenly Mad- Free Fall - Peter at Rubin.JPGI sat and watched Peter as we sat near the figure of the Hindu goddess Durga. He wasn’t looking at the sculpture. He was staring at me. It’s the second time I’ve seen him at Rubin. His companion/aide told me he is 76. He is very tall and sturdy, and walks without difficulty. I observe him. He is wearing a watch that he glances at. His sunglasses are tucked into the neck of his polo shirt. I’m told by his aide that his wife lays out his clothes for him and he dresses himself. The tragedy of Alzheimer’s is I can’t talk to this man. Sure I can ask him a few questions, but I can’t really talk to him and he can’t really talk to me. He is lost in a half daze, sitting in this museum, seemingly engaged. He doesn’t say anything about the sculpture. He sits quietly. Docile. Is he thinking about anything at all? I am wondering about his life, guessing about what a caption to this photograph might be, in the way the New Yorker has contests for the best caption for their cartoons. Who are you Peter, and how is it that we both come to sit in this jewel of a museum in a program for people with dementia and look at the Buddhist relics? Why don’t you say anything? I know you can speak, I’ve heard your voice. Who were you? You look so calm and normal. No one would ever suspect dementia. That’s the irony of this. No one can see it from the outside.

Suddenly Mad- Free Fall - DurgaDurga Killing the Buffalo Demon, Nepal, 13th century, Gilt copper alloy

Durga is represented at the moment of her victory. She has assembled all the weapons of the gods and overcame the demigod Mahisha, who endangered the order of the world. Having chopped off the head of the bull, Durga pulls his body by the hair and stabs him before he can draw his sword. Her fan of arms gives the appearance of two arms in different positions, conveying their furious motion. Durga has 8 to 10 arms. These represent the 8 quadrants or directions in Hinduism. This suggests she protects her devotees from all directions. She assumes the power of male gods to save the universe.  Weapons in the hands of Durga such as a mace, sword, disc, and arrow, convey the idea that one weapon cannot destroy all different kinds of enemies. Different weapons must be used to fight enemies depending upon the circumstances. For example, selfishness must be destroyed by detachment, jealousy by desirelessness, prejudice by self-knowledge, and ego by discrimination.

A comic book called Tales of Durga was distributed for us to look at. This teaches children to admire Durga and embrace the lesson of detachment from the suffering of life.

Sudden Mad- Free Fall Tales of Durga comic.JPGsuddenly-mad-free-fall-durga-page-from-comic-book-the-slayer-of-mahisha.jpg

I am progressing in this disease in very weird ways. Yesterday, I could not understand why I was babbling. Strange sentences, half sentences, spoken to my husband who felt I was doing this because he stayed home. It wasn’t the case. These things just popped out of me, a kind of word salad, nonsensical and disconnected to anything that was happening. I know I sometimes say, “Where going?” when he goes out of the room. That is dropping parts of the sentence. I don’t do this on purpose. It just comes out that way. This was different though. It was saying nonsensical things I don’t remember. Losing more of myself is scary.

I am not very encouraging to others who have this disease who read this. I am sorry about that. I do want to be. I want you to see that I am trying my utmost to remain communicative and functional. I confess that this disease is an opponent that can’t be beaten, but there is no choice to fight it while I can.

More images to share: Suddenly Mad- Free Fall - Bodisattva of compassionBodisattva of Compassion

This journey requires compassion from others to each other and compassion for myself. I seek this important lesson every day. People need to understand that this needs to be their default. If there’s a reason for life, learning compassion is it.

Suddenly Mad- Free Fall - Pratisara one of the protector deities (illness).JPGPratissara, One of the Protector Deities

Suddenly Mad- Free Fall sparrows.JPGSparrows in my backyard. They are there eating seeds and leaves. Years ago I made a series of sculptures and called the series, Not for the Birds. One of the pieces was a wall piece of the front of a birdhouse, shaped like a house. There was a perch, but the hole where the birds are supposed to enter had a black piece of plexiglass replacing the circle where the birds would have entered. A non entry. Another was a glass birdhouse with a tape recorder inside and a loop playing the song of a ground thrush over and over and over. My work was clever, strange and kind of delightful.

 Suddenly Mad- Free Fall butterfly on route to Jeanne’s.pngA butterfly on a flower I noticed on route to Jeanne’s house. Nature is beautiful, and art can’t compete. We are here to have a look and be in awe of it’s majesty. We can love, we learn, we discover, but ultimately we have to let go. We can’t hold onto anything. As I free fall that is what I am learning. I only wish to be able to do so with more grace. Learning grace is my karmic lesson. Let go of the resentment, the disappointment, the anger. Let go. Let live. Let go. Let go.

 

 

Public and Private

Suddenly Mad- Self and others - Self Portrait with an abstract thoughtSelf portrait with an abstract thought

I’m a woman who has been diagnosed with younger onset Alzheimer’s disease. The symptoms came on fast and furiously in the summer of 2015. My very experience of reality changed. I was not forgetting things, and my memory was not particularly impaired at that point. What was happening is that I FELT LIKE I WAS LOSING MY MIND. I had so much anxiety and so much depression. I could barely get out of bed. When I did and went outside, everything appeared hyperreal. I knew what depression felt like. I had been diagnosed with major clinical depression and anxiety by a reputed NYC psychiatrist, who had treated me over the years with antidepressants and benzodiazepines. This was different. In the common vernacular it’s called losing one’s mind.

I tried to muscle my way through it. I was the chair of an art and art history department in a private school, and taught classes as an adjunct professor at an esteemed university. This will pass, I tried to comfort myself. It did not pass. I went to the psychiatrist who put me on a cocktail of medications. Within a few weeks I woke from a dreamless sleep, and found myself dreaming while I was awake. I’ll repeat that. I was dreaming while I was awake! These were fragments of a dream, and when I tried to remember the fragments, they were gone. What was happening to me? A psychotic break? The psychiatrist wanted to put me on am antipsychotic. I refused. I was terrified of what the medications he gave me had done. He told me to keep taking the Klonopin if I wouldn’t take Saphris the antipsychotic he recommended. Increasing doses of Klonopin would not get me to sleep. I HAD NEVER HAD INSOMNIA BEFORE THIS. He tried to taper me off the Klonopin, and stepped down .25 mg a week, adding Gabapentin. I was so trusting, thinking he knew what he was doing. Within a few weeks I had a UTI, and my muscles in my thighs began to have waves of twitching (myoclonus). My previously normal sleep cycle was destroyed. I could not fall asleep without the Klonopin and Gabapentin, but these would not keep me asleep. I woke every hour and the most sleep I got was 3 hours of broken sleep. Many nights I couldn’t sleep at all. I kept working and teaching and pushed myself. I began to have what seemed to me like narcolepsy. I would fall asleep while sitting up for a few seconds to a minute – my head would drop, and then I would wake with a startle. After 8 months like this taking Klonopin and Gabapentin at bedtime, and getting 0-3 hours of broken sleep, I entered a detox facility and the medications were stopped abruptly. Then I could not sleep at all. My blood pressure which had for years been 120/80, skyrocketed to 160/120. I was inconsolable. In the aftercare “retreat” I was sent to after the detox, I saw a psychiatrist, and asked him what he thought was happening to me. He said he thought it was Alzheimer’s or dementia. When I returned home I was unable to sleep for weeks and then months. Yes, I could not sleep at all for months. I began to see overt signs of memory impairment. When I went to the refrigerator to get something to drink, I saw that I had left the cup which I had just had in my hand, on the other side of the kitchen. Moments of awareness were lost. And there was tremendous apathy. I could not do anything. My school books and lesson plans which needed to be organized for the upcoming term, lay in a stack on my dresser. I looked at them from my bed, and wondered about how weird it was that I had lost the initiative to get up and do what needed to get done. A gulf existed between what was my previous normal functioning, and the person I had become. This was well beyond any depression I had experienced. This was the apathy of Alzheimer’s that had taken hold and though I wanted to push myself, I no longer could. The voice in my head would tell me to get up and be normal, but I couldn’t get my body to respond. Without a normal sleep cycle, and months of no sleep, my life had completely unraveled. Finally I opened my laptop and looked up online tests for memory. When I took the tests, it was obvious that my memory had become impaired. I made an appointment with a neurologist at a top teaching hospital in New York who specialized in dementia. He ordered a Spect scan, and told me that the pattern showed Alzheimer’s – diminished blood flow to my medial temporal and parietal lobes. He said the medications I had been given unmasked the disease.

The literature on Alzheimer’s tells us it has a long preclinical stage. I probably had this disease in the making for a decade or longer. I never suspected that the glitches of forgetting my keys, losing jewelry, walking into a room and forgetting what I had gone there for, having to constantly reread paragraphs I had just read, was anything other than aging and stress. I didn’t know there was a relationship between depression with anxiety, and Alzheimer’s. I didn’t know anything about Alzheimer’s disease. Like most people, I thought it affected memory and knew it is a terminal diagnosis. I didn’t know it breaks down the body, and affects everything as it steals memory, stealing appetite, the ability to dress oneself, bathe, talk, walk and finally swallow.

Whether the years on anticholinergic antidepressant medications along with anti-anxiety meds unmasked the disease, or caused it, are bones of contention that will never be solved in my lifetime. The many depressions and relapses were indications of an oncoming neurodegenerative disease. I have a terminal brain disease and it is progressing. Three years after the trauma of being on and then detoxed from Klonopin and Gabapentin…three years after everything in my life I had been doing felt impossible to do any longer, three years after the onset of Alzheimer’s  – I now have wobbly gait, find myself unable to finish sentences, drop pronouns when I speak, have difficulty swallowing, am unable to select clothes from my closet and drawers unless I preplan what I will wear the next day and put it on a hanger (including underwear and socks) and can only dress myself from the hanger. I am unable to follow the steps in preparing a meal, and though I’ve succeeded a few times to prepare a plate of food and have made scrambled eggs and toast with jam, I now can’t even make a sandwich. Often when I type, letters are reversed or completely misspelled. I have to go very slowly in order to accomplish ANYTHING. I write a list everyday which includes reminders to eat, which I check off as I do. This is dysexecutive dysfunction. It indicates my frontal lobes are affected now. It places me in a different subgroup of Alzheimer’s where there is greater frontoparietal cortical thinning.

Where does all the research lead? No where. The question is how to live with this disease while I am still able to. How to push through it and maintain a modicum of independence?

What can I still do? I can still take showers and wash my hair, brush my teeth, use my iPhone and take photographs with it (and upload them here). I can apply makeup, do my hair and clip and file my nails. I can visit the few local friends I have left and not get lost. I can read. I can attend a program for people with dementia at The Alzheimer’s Association in New York (my husband takes me every few weeks), and do participate actively in discussions. I remember peoples names in the group and converse with them. I can get to a program in New York at The Rubin museum for people with dementia, which I’ve been attending once a month for a year. I’ve traveled there alone on the train two times. I can get there myself, but have a lot of anxiety doing this alone. I can climb stairs and descend stairs. I can ride on an escalator. I can buy a Metrocard in the machine and use my debit card, and remember my pin number. I can ride the PATH train by myself and get off and on the train at the designated stop.  I can draw. I participate in online Zoom chats with people who have early stage dementia. I do yoga with a yoga teacher my husband has hired to come once a week. I am able to go on a recumbent bicycle and can sustain riding for up to six minutes. I go to the park and walk. I can heat food in the microwave, and can eat it with a fork and knife or spoon. I can pour myself the green drink my husband prepares for me and leaves me when he goes to work. I can do dishes and I dry them and put them away.  I can go to the bathroom by myself. I can still play a strong game of Scrabble. I play Lumosity games on my iPhone. I can use the remote control for the television and select movies and episodic tv shows. Lately I’ve been binge watching The Flash. I can type these words on my laptop. This is a truncated list, but not far from the truth.

What do I wish I could do? Everything I was able to do – before this happened. I wish I had what is called anosognosia, which is a lack of awareness of having Alzheimer’s. I wish I had the physical strength I had before. I was a weight lifter and trained twice a week. I rode my bike every day for miles. Now it sits in storage with deflated tires. I miss myself, the self that was tireless and active. Now I have to push myself very hard to get through the day and keep moving.

I get very anxious. I get anxious with every transition. I get anxious about going places. When I do go I’m happy about it. To simply be able to walk is an accomplishment, but going places in New York is a challenge that rewards with experience that I can write about.

My dear friend Jackie and her husband Lon picked me up and drove to The Museum Of Modern Art in NYC. The main lobby was different from what I remembered. It was the same space but the layout had changed. What I remembered as being on the left was now on the right. The information area with the beautiful six panel Brice Marden painting above was still the same. I knew Brice Marden when my son and his daughter attended the same school. I remember speaking with him at the Guggenheim museum and meeting his wife, Helen, also a painter.

Suddenly Mad- Self and others (main lobby MOMA)Suddenly Mad- Self and others (MOMA - Brice Madden painting above ticket area) Brice Marden painting above the ticket area

I was thrilled to see that there was an exhibit of Constantin Brancusi sculpture. Brancusi (1876-1957) first exhibited his work in the famous 1913 Armory show, alongside Pablo Picasso, Marcel Duchamp, Henri Matisse and other vanguard artists. Born in Romania, he learned and became a skilled woodworker. In 1904 he moved to Paris and developed a vocabulary of simplified shapes and visually reductive works that evoke rather than resemble the subjects named in their titles, pushing form to the threshold of abstraction.

top left to right -Malastra, Fish (two views) bottom left to right- The Cock, Mlle Pogany

Bird in Space, 1928, bronze, is his refined figure of a bird in it’s most concentrated form. The first was made from marble, then bronze and plaster versions followed in the years and decades to come. Of the nine existing bronze versions, no two are identical. When I first visited this museum it was in the old building that was erected in 1939. Bird in Space was installed at the top of the landing on the staircase that ascended to the galleries. To me it soared in that location. It appeared dwarfed in this large room.

Suddenly Mad- Self and others - Bird in Space - BrancusiThere were many strange things about being in the museum and seeing the exhibits and art. Since I knew and still know so much about art, I was struck by how the sculptures in the Brancusi installation were presented. One piece (Newborn) was in a glass vitrine. Brancusi would not have approved. For him sculpture is the way it appears in space, the way form interacts with space and any intervention, like a vitrine, would not have been the way he intended the work to be seen.

Suddenly Mad- Self and others - earliest version of the Endless Column - BrancusiEndless Column, 1918

Brancusi had used a single or double pyramid as a base for his sculptures, but eventually came to see this abstract construction as a fully realized work. Carved from oak the succession of pyramids forms a rhythmic and undulating geometry that suggests infinite expansion. In 1937 he erected a steel Endless Column in Tirgu-Jiu, Romania, that soared ninety-eight feet into the air.

(Memory. Brancusi. My husband introduced me to his work. I came to understand that Brancusi reduced form to it’s essence. There are so many feelings for me related to his work that go beyond the work itself. Memory. The book of Brancusi photographs I gave my husband on his birthday. The aluminum lathed sculpture my husband made that looked like an organic egg form growing in the center out of the tubular ends. The lead pieces he cast that were like pods from another planet. The limestone cone he carved that lays on it’s side. He was a brilliant artist. He was. Now it doesn’t matter. He didn’t keep going. Now I am approaching the end of my life and he is my caregiver. The life we planned became something else. This was to be a time in which we would have time to still explore our passions, make art, films, write, travel and explore. Be together and remain strong. Then this horrible disease came for me and because of this it came for him too. The life we planned did not happen).

Suddenly Mad- Self and others - Alexander Calder Fish and Net mobileAlexander Calder, Lobster Trap and Fish Tail, 1937

Jackie and Lon and I went up the stairs. There it was, the Calder mobile I remembered hanging overhead. Calder attended Stevens Institute, the engineering college in my city. He went on to develop a new form of sculpture, the mobile. His innovative use of materials, gracefully moving mobiles, and startlingly unique stabiles made him distinctive and a pioneer in his field. His works concerned with space, motion and the relationship between the viewer and the artwork advanced modern art. When I walk up the hill to Stevens Institute, I look at the mobiles he gifted to the institute that hang in the library entrance.

On the second floor we went into an exhibit called Being: New Photography 2018, which poses the question, how can photography capture what it means to be human. The works call attention to how individuals are depicted and perceived. Some use proxy objects replacing the body, as in Matthew Connors, Mask in Reverse.

Suddenly Mad- Self and others - New Photography - Mask in Reverse - Matthew Conners - Moma

Others challenge the conventions of photographic portraiture, depictions of the body, gender, transformed images of the past…making the present an embodiment of how personhood is expressed today.

(I see that these photographers are grappling with the same questions my husband was dealing with in his art work when I met him. What it means to inhabit ones body, consider ones gender, to be a human. How it feels to be alive, the struggles, the joys, the isolation from and the connectedness to others. Then life happened. Work and toil eclipsed art for my husband. I am so sad for him. He did not deserve to give up his dream. He always helped me so much. Always supported my vision. He should have developed his own. He had a great mind and so much talent. I am sad for him having to be my caregiver now. I feel so useless in this disease. Feel that I am a burden. I am unable to contribute much to what was an equal  partnership. I am so sad about this. I am so sad for him being trapped by my decline).

It takes grit to keep going as an artist. To keep creating. Those who make it and keep going and developing are to be admired. Phillip Guston was such an artist. He said, “Painting and sculpture are very archaic forms. It’s the only thing left in our industrial society where an individual alone can make something with not just his own hands, but brains, imagination, heart maybe.”

Suddenly Mad- Self and others - Phillip Guston- SourcePhillip Guston, Source, 1976

Suddenly Mad- Self and others - Phillip Guston -TalkingTalking, 1979

Suddenly Mad- Self and others - Phillip Guston - Inside the StudioIn the Studio, 1975

It takes immersion and context to understand an individual’s contribution as an artist. I reject the idea that art can be dismissed when a person is not interested in learning. Before I got sick I considered myself a lifelong learner. I still try very hard to learn and grow, as much as it’s still possible. I research and read, and share my experience.

Two more great paintings I saw at MOMA, by artists I admired. Both are gone now.

Elizabeth Murray (1940-2007) was a New York artist who I knew. She had a wild shock of white hair and crystal blue eyes. Her work blurs the distinction between abstraction and representation. Her shaped canvasses and multipart supports challenged traditional conventions of painting. Using bold colors and biomorphic forms, Murray introduced a dynamic sense of movement into her imagery.

Suddenly Mad- Self and others - Elizabeth MurrayElizabeth Murray, Do the Dance, 2005

I was always struck by the stark meditative paintings of On Kawara (1932-2014) who began his Today series, or Date Paintings, in 1966. He worked on the series for nearly five decades. A date painting is a monochromatic canvas of red, blue or gray with the date it was made inscribed in white. The quasi-mechanical element of his routine makes the production of each painting an exercise in meditation. Despite the mechanical appearance the paintings were meticulously hand made. In the contemplation of the series, we glimpse a sign of life beyond the dated works themselves, on the horizon of unlimited time, an act of rupture within the continuity of time.

Suddenly Mad- Self and Others - On Kawara - April 24 1990On Kawara, April 24, 1990, 1990

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People

The woman who wrote my recommendation for graduate school was the famous artist, Louise Bourgeois. She lived to be 99 and produced an amazing and abundant body of sculpture, drawings, prints… She said that art was her religion.  It’s the expressive creation of  the self in a material form. Music and dance are ephemeral, time bound. Literature has to be read and deciphered, or performed and seen (drama). Visual art exists, is brought into existence and is.  It is physically imbued with expression, the spirit.

A woman who read an essay I wrote for Dementia Action Alliance contacted me around six months ago She said she had never considered that PTSD (post traumatic stress disorder) and trauma could contribute to the development of Alzheimer’s, and was interested in my perspective about how the Holocaust and it’s impact on my late parents who were survivors, set me up for getting Alzheimer’s. She said her late father had Alzheimer’s and was a child during the Armenian genocide (1914-23) and wondered if his exposure to persecution and the murders in his own family, caused post traumatic stress which much later became Alzheimer’s. She found my essay about the relationship of depression/anxiety and PTSD leading to Alzheimer’s interesting. She said she had never read this before. BA wanted to interview me by recording me on a Zoom chat, and posting it to her website as well as uploading it on a worldwide server. I asked her to please allow me to see the video before she uploaded it. She told me her internet connection was too slow to be able to do that. I told her she could post it to another server so I could watch it privately. She said no. Then she uploaded it and the video went live and I watched it. I appeared confused, didn’t answer her questions directly and instead went off on tangents. My speaking was aphasic and the answers were rambling, to say the least. I felt humiliated and wanted her to take it down, because it showed me struggling to communicate. It made me very sad to see this. Because she showed an interest in reading my blog and replying to my posts, I didn’t tell her. I didn’t want for people to google me and beside my films and writing which comes up, to see me like this. I want my legacy to be the work I have done, the films I have made, the writing, the art – not this disease. I watched it again last week, after she wrote me a reply to my last post, saying, While some write of what they still have and are able to do, you write of what you have lost. 

I asked her who she knows that has Alzheimer’s at my stage, that writes about their experience, is able to provide a mirror of themselves in the disease through writing. She mentioned a woman who posts videos of herself, talking about how she hallucinates.gets lost and sometimes doesn’t know who she is. I watched the woman’s videos and saw that it’s not likely she has Alzheimer’s. She has Lewy Body disease, and possibly Fronto Temporal Degeneration, which is very different from Alzheimer’s. So I understood that BA lumps people with all the dementias together. To say to me I write about the losses where others talk about what they still have, missed the point entirely. For me the changes are in my functioning, the difficulty performing the activities of daily living. That’s what Alzheimer’s does to a person and this is germane to my experience. Yet I push every day to be as independent as I can be. She said I am always talking about my losses, yet when I pointed out how much I retain in writing about art, she claimed to not be interested in what I taught to my students (art history) or my interest in what she calls modern and avant garde art. She said she gets intellectual stimulation from listening to opera and sometimes seeing ballet. I let it go, but I was hurt because through writing about art I am able to share my ideas and perceptions. This means I have retained knowledge and a degree of sophistication. It shows that even with Alzheimer’s, I know I am not just a plebian. It means I still know who I am, because I am still connected to who I was.

I viewed the video she made of our Zoom chat a few weeks ago. Humiliated to see myself rambling and confused, unable to answer her questions in a cogent manner, I asked her to please take it down. I told her I had never had a chance to preview it, and found it humiliating to see it online. She tried to twist my arm to keep it up. My husband called her to request it be removed. She never answered his call. Then I thought about what’s really important to people who have Alzheimer’s. Kindness, understanding, encouragement, compassion, RESPECT. Was this woman offering that to me when she told me that she does not share my passion for art and what I taught students for so many years? Why say this? She is obviously interested in how a woman she interviewed who has Lewey Bodies and FTD, decorates her walker with purple fabric and talks about not knowing who she is and getting lost. But when I write about art and demonstrate that my memory and communicative ability to write and reflect are not fully impaired, she tells me she does not share my passion for art. This did nothing to encourage me. I was hurt. This is not something you say to someone who is fighting a disease and is vulnerable, and has been trying to retain her passions and abilities.

Finally I prevailed and got her to take down the video, by siting privacy policies  for online videos.

GREG O’BRIEN is an amazing writer who has Alzheimer’s that is slowly progressing since his diagnosis in 2009. That means he was diagnosed early, as it’s 2018 and he has just completed his second book, Beyond Pluto, and writes a blog for Huffington Post and Psychology Today. He is still extremely adept at speaking publically about his experience with the disease. He has retained his sense of humor, and his ability to communicate clearly about how the disease has affected him. That is advocacy and teaching.  If I were like that, I would be doing that too. I would be out there advocating for de-stigmatizing Alzheimer’s. I would be speaking to groups. Greg called me last week asking me if I wanted to be a part of the registry of people with Alzheimer’s in UsAgainst Alzheimer’s. I do want to be a part of this registry. When he called, I had trouble speaking to him on the phone. I had trouble speaking! I felt very sad about this because I wanted to tell him how much I admired his writing and the advocacy work he does. I wanted to tell him about my experiences having this disease. I asked him if we could try again, and he said to shoot him an email to set up another day and time.

My best friend Ruth keeps me going. She visits me nearly every day, and her door is always open to me when I can make the walk to her apartment which is 1/2 mile from my home. She makes sure I eat (lost my appetite in this disease and have lost a lot of weight), makes sure I remain conversant, listens to me, and tells me about her own life,  and brings a lot of joy into my life.

I’m not the most positive person because Alzheimer’s has progressed and a lot of things are hard for me to do. I appreciated that Greg O’Brien told me that extreme depression is a part of what he experiences, and that he struggles too with keeping going. I am scared about what is happening to me. I write about this, but also write about what I still find interesting, beautiful and heartening.

 

Haunted

Suddenly Mad- my photo on the cover of the booklet for the Alz Assn photo exhibit

The title of the exhibit of photographs is Connection. This is my photograph of Bob on the cover of the booklet.

Ironic because increasingly my experience of Alzheimer’s is disconnection. I am haunted by the disconnect of my former life to the life I am living now.

*****

Last week was busy. This week is not. I like to write about going places and doing things. When I’m home I don’t know what to do with myself, and end up playing Luminosity games for hours. Or I read the Alzconnected.org forum and get so sad when I read the spouse forum and see how the their loved ones have progressed and have been placed in memory care or nursing homes. I intended to read some fiction, more short stories. I haven’t. The books sit pregnant with promise on the bookshelves. Since I have to be accompanied to go to New York City now, and it has to be for a specific program, a lot of my days are boring. Boredom is bad for dementia.

******

There’s a lag in telling my story. This blog is supposed to be my shared diary, but I get behind the ball, and then I have to look at the calendar on my iPhone for the memory of the days I did interesting things.

On Monday, July 16, we attended the exhibit of photographs sponsored by the Josephine Herrick Project and the Alzheimer’s Association. I took this photograph of Bob during our photo class, when we were assigned to photograph things outside of the windows. It was selected for the cover of the booklet published for the show. My husband drove to Manhattan, and my dear friend Ruth joined us. This was the second time Ruth had been to Manhattan since she moved from Atlanta eight months ago. For her it’s a thrill to see Times Square, drive on 42nd Street. For me it was a thrill that she joined us.

New York is filled with tourists in the summer. For me it was another trip as the Alzheimer’s tourist.

*****

I had owned an art gallery in Manhattan in the 1990’s, in Manhattan’s SoHo district. My drawings and sculpture have been shown in Manhattan galleries. My work appeared in a few The New York Times articles. But I never “made it’. My work was included in some museum collections, I made films, and presented to audiences internationally.  A cursory search on Google shows me that I am still here, with a history and checkable reference. The information is a composite of a trajectory and a life that had direction, ambition, and then it didn’t. Everything that I was is in the past. Then everything stopped when I progressed in Alzheimer’s. My identity changed. I had to stop working. I could no longer hustle to make another film. All I could do was draw and write this blog, and participate in online Zoom chats.

My daughter was the one who found the program at The Alzheimer’s Association in New York. She is too busy to take me, but without her pro-active research I would not have found it.

Now I’m  included in this exhibit of people who have cognitive impairment and Alzheimer’s. Members of the support group and creative engagement program.

I know I go back and forth between the past and present. I think it’s my way of trying to connect the past to what has happened to me. It’s a see-saw. I’ll never know why this happened to me at an age when others I know are still vital.

*****

I hosted art openings in my gallery. I never would have imagined I would ever go to one in which only my first name was used to identify who made the work in an exhibit of photos sponsored by the Alzheimer’s Association. Unless one is already known by one name, like Madonna, having one’s work labeled with only ones first name is odd. It reminded me of kindergarten. A demotion of identity.  Isn’t this a result of the stigma that this disease retains? While I am delighted to have been a part of this program, and grateful to have my work in the show and my photo on the cover of the catalogue, I am aware that anonymity is stigmatizing. It’s not Alzheimer’s Anonymous.

At the opening I met Geri Taylor who is an Alzheimer’s early stage advocate. I was surprised that after 6 years (she first started noticing signs of Alzheimer’s in 2012 at age 69 and is now 75) she does not appear to have progressed. In fact she looks younger and better than she did in photographs from The New York Times article titled “Fraying at the Edges” .

https://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-alzheimers.html?mtrref=www.google.com&login=email

She was svelte and beautifully dressed, and to me did not have any difficulty walking and talking as I do now. If she has this disease it is progressing extremely slowly. Her original diagnosis was MCI (mild cognitive impairment). That was my original diagnosis as well, but in less than two years I have progressed and can’t prepare meals, get dressed without putting my clothes on a hanger the night before, have at times forgotten how to eat with utensils… I know that Alzheimer’s is a disease of progression, and although she’s been diagnosed, it’s in no way evident that she has it.  The media wants to believe that a person can have Alzheimer’s and not progress. Wouldn’t it be lovely if that were the reality? I’ve written about Amy Norton who got this disease at age 43, and progressed rapidly until it killed her at age 48. The late great women’s basketball coach Pat Summit got it at age 59 and was gone at 64. Ken Sullivan, a formerly brilliant finance guy in Massachusetts was diagnosed at age 47 and held his own for 3 years before his wife placed him in a facility. He was 52 when the disease took his life a month ago. Greg O’Brien, wrote this beautiful piece about him for his blog in Psychology Today.

https://www.psychologytoday.com/us/blog/pluto/201807/redefining-love-and-courage-in-times-duress 

What I know is that when it’s younger onset the disease progresses. In some faster than others. 5 years seems to be the cut off point for so many.

AND it’s not a matter of attitude. If that were the case Ken Sullivan would still be here as he had a great attitude.

*****

The following are some photos I took at the opening. I got to meet the program director of The Josephine Herrick Project, Erica Read, and had a pretty good time.

https://www.jhproject.org/alzheimers-association-show/

https://www.jhproject.org/program-galleries/2018/7/23/alzheimers-association

This is my favorite portrait, which didn’t make it into the exhibit but was included in the booklet. It’s of a man who calls himself Josephus Pratticus and someone who has become a good friend.

Suddenly Mad- The exhibit - my photo of Joe Pratt

Tuesday July 17. Rabbi Rob texted me in the morning. Can he visit? What time? I said 5 o’clock after checking my iPhone calendar. Best to see him after yoga with Krishna. I wasn’t feeling very strong. The postures were hard to do. He keeps telling me that as long as I work on my balance pose, walking will be easier. The rabbi arrives and we discuss the sadness, the knowing, the fear of death. He tells me about a woman in the congregation who was in her forties and had terminal cancer, and told him she was afraid to die. He told me about his mother who died suddenly at age 61 from an aneurism. People die. Everyone does. It’s the slow strange death of Alzheimer’s, what is called death in slow motion, that is so hard for me. I would rather a gigantic grand piano fall from the sky, would rather a plane suddenly fell on me, would rather a hit man come through my door. I do not want to progress through the stages of this disease. I’ve seen late stage in Michael the former lawyer who is now doubly incontinent, in a wheelchair and a mute paraplegic who was wealthy enough that he now has a 24/7 hour care and is fed, bathed and dressed. I have a DNR. Don’t feed me if I can’t feed myself. I know that I have progressed in two years. I’m not able to walk as I did before, my balance is off and I fall. I experience sound as alarming, have difficulty dressing and showering. I’ve had outbursts. So much anxiety. I can’t sleep more than a few hours at a time. Such a very very very strange disease. Some people who are diagnosed do not experience these things. I question, do they really have it? Apparently I have had it for a long time, well before there was any cognitive impairment. That’s what the scientists say – Alzheimer’s begins long before symptoms of memory loss appear.

http://www.sandiegouniontribune.com/business/biotech/sd-me-alzheimer-amyloid-201706013-story,amp.html

*****

Wednesday, July 18, my friend Jeanne took me to The Metropolitan Museum of Art Met Escapes access program. This is a program for visitors with dementia and their care partners with discussions about art and art making in the museum galleries.

Suddenly Mad- Outside the Metropolitan Museum of Art

It was the spookiest experience of the week. A haunting experience. I taught art and art history for twenty years. The entrance for the program was the same entrance I’d used dozens of time when I led tours for my students through the galleries. Here I was no longer a teacher about to lead an art tour, but instead walked into an art access program for people with dementia led by docents who know about as much as I still retain about the art. Here I was in the room I used to bring students to conduct tours of art and now I was there as a person with Alzheimer’s. Everything around me is the same, but I am different. It felt like I was the ghost of my former self. I will never again be the confident woman I was. Instead I have become a fearful person who gets lost and disoriented, forgets what I am trying to say, desperately clings to my husband and the few friends I have who are kind enough to spend time with me and plan trips like this one. Jeanne is such a person. A friend.

Suddenly Mad- Inside the group meeting area at the Met (where I used to take my students)suddenly-mad-inside-group-meeting-area-at-the-met-man-with-stroke-and-antoinette-his-aide.jpg

suddenly-mad-met-escapes-sign-for-access-program-in-group-area.jpgWe were led into the Met Escapes gathering room and Jeanne and I were introduced to Barbara who led our small group tour. Lin, who I met at the program at the Rubin Museum was there. We were given adhesive name labels and off we went to the elevator and up to the galleries to see the first of four art works, the time allotted to see and discuss art during the hour and a half program. I remembered how I would stay at this museum for at least four hours, and look and think deeply about the art. I was so curious and free then and independent.

First stop Rosa Bonheur, The Horse Fair, 1852 (later touches in 1855).

Suddenly Mad- The Horse Fair by Rosa Bonheur at the MetI had talked about this painting to my students when I taught art history. I told them that Bonheur was a maverick, a very unusual persona for a woman in the 1850’s. She was the most well known woman painter of her time. She had been very wealthy, lived in a castle and was a outspoken lesbian, who wore mens clothing. Women were often only reluctantly educated as artists in Bonheur’s day, and by becoming such a successful artist she helped to open doors to women artists that followed her. The huge painting depicts muscular horses, their tails tied in buns, being sold by horse dealers on a street in Paris. We looked at the painting, discussed the way the animals were painted, the energetic composition with depth demonstrated by the procession of horses being led to the middle foreground from the left and receding into the distance on the right. We talked about  color, the way red is used to punctuate, that Bonheur has painted herself atop a horse at the center wearing a cap and is the only one looking at the viewer.

I looked around the gallery. There were other works I wanted to see. The next room was filled with Impressionists; Monet, Manet, Cezanne…, but there was no time  to look at other works of art and I am no longer the independent woman I was. How disappointed I felt to only get to look at The Horse Fair by Rosa Bonheur, and not have time to stop in front of a Manet or a Cezanne, whose complexities and ideas about painting are far more interesting to me.

We were taken to see a Van Gogh (1853-1890). Cypresses painted in 1889, shortly after Van Gogh began his yearlong stay at the asylum in Saint-Rémy. The subject, which he found “beautiful as regards lines and proportions, like an Egyptian obelisk,” both captivated and challenged the artist. Barbara asked questions about what is the time of day in the painting, the thick swirls of paint. She told us that before oil paint in tubes were introduced in the mid 19th century, painters would grind their own pigments.

suddenly-mad-vincent-van-gogh-cypress-1889.jpg

I looked around the gallery, saw the Gauguin’s, knowing how it was his relationship with Gauguin that spurred him to cut off his ear that fateful night. I wanted to walk across the gallery and look closer at La Orana Maria, and the paintings he made in Tahiti after he left Van Gogh in Arles. I wanted to see more.

We were accompanied to our next stop, a large combine wall piece, The Field, by an African American artist, Thornton Dial (1928-2016) . It’s a constructed piece that contained planks of wood, nails, wire and layers of animal hide. I’ve since read about Dial and Bill Arnett, who has supported Dial and his commitment to creating a body of work that speaks of the trials of slavery and the Southern African American artist. I disliked the piece initially. I dismissed it as the work of a naive untrained artist. Since then I’ve researched his work and life, and I’ve realized that to understand an artists work you need to understand the context. I was not accepting the context and what inspired him to develop his densely layered works. Pollock’s drip paintings require a context to appreciate them. So does Warhol. Certainly this benefit should be given to a Southern African American artist whose work is reminiscent of Rauchenberg’s combine paintings. The vocabulary of art is understood by it’s context. Through art the narrow minded person I have been becoming is developing a small crack and some light is getting in. You can decide to like or dislike something if you understand it, but not liking it because of a superficial assessment is narrow minded. So I learned something about myself from seeing this work. I learned to be open to still learning.

Suddenly Mad- Thornton Dial - Shadows in the Field at the Met

Next stop was a large Abstract Expressionist painting by Joan Mitchell. Sunflower, 1969.

Suddenly Mad- Joan Mitchell - Sunflower 1969 at the MetJoan Mitchell (1926-1992) is known for the compositional rhythms, bold coloration and gestural brushstrokes of her large paintings. Inspired by landscape, nature and poetry, her intent was not to create a recognizable image but to convey emotions. Her early success in the 1950’s was striking at a time when few women artists were recognized. As an important member of the New York School, she achieved the type of success that eluded many of her female peers. I believe it’s because her work is genuine, original. She saw much of the world – letters, sounds, people, emotions – as color and memory.

It’s enlivening for me to be able to read more about an artists work and life. Why they worked the way they did, and in Mitchell’s case this one painting, which I didn’t really appreciate fully when I saw it at the museum, led me to read more about her toughness, and how she was able to convey her inner life into her art in a body of work she developed over forty years.

We were given some paper, colored pencils, yellow post it pads, colored tape, and colored tissue, to create something that was reminiscent of the painting – a sunflower. We were told we could tear and tape, crumple and draw, and were given about five minutes to make a little work of art. To me this felt silly and clumsy in light of looking and discussing the art.

Jeanne and I left the museum and proceeded down Fifth Avenue and caught the M-1 bus to 42nd Street. I was concerned about riding a NYC bus, thought it might be too crowded and we wouldn’t get seats. It was fine. We got off in front of The New York Public Library, and Jeanne took me to lunch at Le Pain Quotidian on 40th Street.

Suddenly Mad- Jeanne walking to the M1 bus after the Met

Thursday, July 19. From the sacred to the profane. An appointment with the neurologist at NYU Pearl Barlow. He prescribed yet another medication, Memantine, which is used to treat moderate to severe Alzheimer’s disease. I haven’t started it yet. Clearly the Rivastigmine has not been doing much good. When I tried to double the dose as he suggested (then he wanted me to triple it), I could not stand or walk. It appears to me that I have neuroleptic reactions to drugs. Do I dare try this? The jury is out for the time being. I am scared to introduce another drug into my system, knowing that there are no drugs that stop the progression. The neuroolgist asked if I was seeing a psychiatrist. He  obviously hasn’t looked at my chart. He didn’t know or remember that after I’d seen the psychiatrist he recommended (the one who developed the stages of Alzheimer’s) that the doctor did not acknowledge the result of the scans that showed the pattern of Alzheimer’s. That psychiatrist diagnosed me with “loosening of association and flight of ideas” and wanted to prescribe first Risperidone an antipsychotic that puts Alzheimer’s patients at risk for a stroke, then Lamictal which is given in Bipolar disorder, then Depakote both of which cause loss of neurons.. I did not take these meds. When my decline started it came on as major anxiety and major depression. Whe this started and I thought it was a relapse of major clinical depression, back in Niv 2015, I took the meds offered by a different psychiatrist, Welbutrin, SAMe, Klonopin, and Ativan. Within weeks I woke up with what I described as fragmented non linear thoughts, dreaming fragments of dreams I could not remember while I was awake. When I tried to stop taking those meds, I could no longer fall asleep. I know the medications affected my brain. The first neurologist said they unmasked the disease. Why would I want the risk of taking anticholinergic drugs again? Anticonvulsants? Aren’t things bad enough? Will it help for me to be a perpetually sedated state? Would I even be able to dress myself then? Would I be able to walk and talk? I no longer trust the psychiatrists. I believe along with exposure to pesticides and toxins, that the psychiatric medications caused this disease to be “unmasked”. In other words I don’t think I would have gotten it if I had not been put on these medications in the first place. They caused brain damage. Yes I have loosening of associations and flight of ideas, but it’s because my brain has been damaged. I’ve been traumatized. It’s not something that medications are going to fix. Exposure to Klonopin over the course of late 2015 and 2016 caused iatrogenic disease. I lost the ability to sleep. That led to brain damage because of the inability of my brain to clear amyloid. Cognitive impairment followed and the progression of Alzheimer’s began. There is no cure or help for this disease. I left his office more anxious than when I came.

Friday, July 20 – This was the third Friday of the month, the day I have been going to The Rubin Museum’s Mindfulness Connections program for people with dementia. I’d gone myself for the last two months. This time Luiza, my newly hired companion came with me. I have grown weaker, and the walk to the PATH train took a half hour rather than fifteen minutes as it had in the past. It’s an easy commute but I am exhausted. All the time. I haven’t had over 4 hours of sleep a night in over 4 years. My walking feels now not only wobbly, but I feel like a gravity is pulling me down. I wanted Luiza there as a precaution if I fell (I actually fell down part of my spiral staircase the other day). We got to the museum and joined the usual suspects and and their caregivers. Maureen the 65 year old woman who doesn’t know where she lives or what her profession was, but is pleasant and this day was smiling, her fingernails and toes painted red; Michael in late stage dementia his wheelchair along with his devoted and warmhearted aide Georgia; Scott the former plastic surgeon who is 64 and was diagnosed 5 years ago and is definitely holding his own in a slow progression, the old gents who are 90, who always say that everything in the museum is beautiful. A woman with her mother who looked to be in her eighties and showed no evidence of cognitive decline, a man who asked “how do you become a Buddhist”?

When it was time to go upstairs to view objects and discuss them, I turned and saw that Luiza was gone. The sweater I had given her to hold for me was on the table. I panicked. She would not know how to meet us. Then she reappeared. She’s gone to the rest room. I asked her why she didn’t tell me. She said she had. Did I not hear her? How horrible to get panicked for such a stupid reason. Why does this happen? I’m so reactive.It’s exhausting. I hate this disease.

We went upstairs and viewed several objects and Jeremy talked about their meaning. Paintings from the tradition of Eastern Tibetan art, a replica of the Copper Colored Mountain Temple where the (possibly mythical) Padmansambala resides.

Suddenly Mad- Rubin Museum - Drempa NakmaSuddenly Mad- Rubin Museum - portable Padmasambava movable shrineLuiza and I left the museum after the tour and headed to the PATH. It was rush hour and I told her that in order to get a seat, we would have to walk down the long platform to be near the front of the train. The train came and I rushed to secure us two seats. Once we’d arrived in Hoboken, more exhaution. We stopped at the park on the way back. She didn’t say a word about the museum or anything we saw. I wanted to elicit some interest in something. we could both relate to. I mentioned the Armenian artist, the late Arshile Gorki. I showed her photos of his work, the famous painting of him as a child with his mother. We sat in the breeze on a bench, and then returned to my home and she left. I called Ruth, my dear friend and told her that I had made it home.

This disease is exhausting for me emotionally, physically and cognitively. Every decision every transition, so much anxiety and I am tired of it, and see that fighting it is my daily job. It takes the pleasure out of living. Everything is about pushing myself through each day. I can understand why the end comes quickly in fast progressors. There comes a tipping point where I feel I am no longer able to fight it. And yet I carry on.

The Daze – The Days

Suddenly Mad- The Daze (sky)Things are a daze of forgetfulness unless I look back at my iPhone calendar. Then I remember the events and emotions connected to the previous days. The people I saw, places I went, and the days that I didn’t go anywhere, and how that made me feel. The triumphs of being able to simply go somewhere outside of my home, be dressed neatly  and be able to participate instead of just sitting on my couch (a term my friend Margery who also has Alz calls couch lock). The small pleasures of being able to be a part of life. To be present.

I know the last post was June 29. Over two weeks ago. There seems to be a lot of progression in a matter of weeks. More confusion and forgetfulness. The crazy systems I’ve devised to keep functioning are just that – crazy. Nothing about this makes any sense to me, all I know is that I have Alzheimer’s and I keep pushing myself through each day. My brain feels at turns delirious and then slows down so that I can’t think at all. My body is weaker. Walking is getting harder. I am not able to remember things in any kind of order, everything is becoming a kind of blur. The iPhone calendar has been and remains a handy reference for remembering as well as a tool for planning. It tells me the date and time, and lets me set alarms so I can be ready to show up for things. I function because of the support I get, mainly from my husband. Meals are prepared for me, and I eat. I am told it’s time to go and I push myself to stand up and walk. I’m aware all the time of having this disease and how my focus and physicality is altered. I’m conscious that I’m walking through life in a daze, and it’s very hard to be purposeful when my brain is telling me not to be.

Creativity has been challenging. I have found myself sitting in front of the blank page in my sketchbook and not been able to begin drawing, and walk away. I did do a drawing of my husband last week. Before I could keep going and going with a drawing until it developed into something I was satisfied with. Something that surprised me and looked beautiful to me. This time I was only able to stick with it for a short time. He is much handsomer than this. Wish I could capture that. I look at the photographs I take of him and see how this has taken a toll on him. Sadness in his eyes, weariness, and pain in his body. This is an impossible situation. We were planning to continue working for several more years and then retire and enjoy our “golden years”. This disease has robbed us both of that.

Suddenly Mad- Drawing of WayneMy husband tries to find solutions. I have a yoga teacher that he hired. I used to do yoga and attended classes and practiced it alone in the earlier stages of this disease. Now I can’t seem to do it without instruction. Krishna, my teacher, does yoga with a man who lives a few miles away, who is in his seventies and has Alzheimer’s. My husband had put an add on Craig’s List for a home health aide/ companion and Krishna responded suggesting he consider hiring him to teach me yoga. I was very strong before this disease stole my strength, cognition and initiative. I was weight training with a trainer and doing yoga classes once a week. The body remembers and I am able to do many of the asanas, but I need instruction because I have trouble getting started. Once I’m on the mat I can do it.  Here are pictures of Krishna assuming yoga poses. He says I am strong, because I can do the poses. I can balance on one leg and hold a tree pose. Unlike his other client who has Alzheimer’s, I do know my right from left, no confusion about that, and can do the balance and Warrior 1,2 and 3 poses, and many of the postures he demonstrates. Doing them alone though and having the discipline to get started alone is another story.

Suddenly Mad- Krishna balance poseSuddenly Mad- Krishna yoga headstand

Before Alzheimer’s changed everything, Sundays used to be a day I would be with my husband before both of us readied ourselves for the work week ahead. Now that I’m home so much, Sundays are a day he needs to rest, and I don’t know what to do with myself. I can go out for a walk, but without a destination it doesn’t make sense to me to go walking aimlessly. Beyond a certain distance I become disoriented. I can go to the park which is 2 blocks from my house. I do that a lot. My husband was taking me for walks frequently, but since his back has been bad, that has decreased. So I end up sitting at home playing cognitive games on my iPhone over and over. I get bored and sad. People with Alzheimer’s crave company and companionship. My husband tends to withdraw from me and that makes me sad. I know how boring and withdrawn I have become and he doesn’t really know how to relate to this person who is inhabiting the body of the person who he knew as his wife.

To conquer boredom I always say yes to going on a trip anywhere. My friends Jeanne and Bob offered to take me to Tinton Falls, where they go to see their osteopath (I asked to see him) and have lunch at a restaurant called Mumford’s. I was nervous and anxious about going with them. It takes me so long to get ready in the morning, and that Monday, July 2, I would have to be up by 7am to be ready by 9:15. I usually can’t fall asleep until after 2 am and need hours to get ready. But I was ready on time. Jeanne later told me my expression when I stepped out the door was a look of sheer panic. Once we were driving I relaxed, and saw that we were heading in the direction of Newark airport.

Driving to Tinton Falls took us through roads with trees and greenery. I’ve always lived in an urban setting although my city is quaint and dotted with trees, it is definitely a city. It felt good getting away from the buildings and cement.

We used to go to the beach in the summer, and would drive to upstate New York to go hiking and camping. Summer’s were times for enjoying the outdoors. Memories of years we would drive down to the New Jersey shore come back to me now. The brisk air and open sky crossing the bridge that connects the little islands off the main shore. Towns with beaches and big Victorian houses near the beach. The ferris wheel and the amusement parks we’d go to with my kids. We rented a little house down the shore a few blocks from the beach. My husband bought two crabs for my daughter. Those crabs lived for years in a cage in our bedroom. Memories of hiking on the Appalachian trail, with backpacks filled with food, sleeping bags attached and sleeping in a tent. Renting a house near Woodstock, New York. Our son, just a baby then. The vast lawn in front of the house. Fireflies at night. Dinners with the group of friends we rented the house with. Parties and beer, sitting on the patio in rocking chairs. The years, the summers, a blur, punctuated by sporadic memories, images.

I’d imagined it would take longer getting to Tinton Falls. Bob parked the car and we were there at the osteopath’s building, poof- and we were too early. The doctor wasn’t there yet and the office was locked, so we three went out to sit in the garden.

It was hot, very hot, and Jeanne couldn’t stay outside. I sat with Bob at a table and we talked about Alexandria Ocasio-Cortez who had just won a Congressional seat in New York’s 14th district, defeating the incumbent, Joe Crowley. This was safe talk knowing Bob is a long time Democrat (as am I) and retired lawyer. He is a wonderful guy who has told me about his life story. Born into a family of lawyers and judges, the law was the family business.

Suddenly Mad- The Daze (Darwin sculpture at osteopaths office)The doctor arrived and I walked around the waiting room, while Jeanne went into her appointment and Bob read a book. I spotted this sculpture and snapped a photo. It’s a bronze cast of an ape holding a human scull, sitting on a stack of books. The name DARWIN is inscribed on one of the books. This got me thinking about Darwin and his theories about evolution.

Summary of Darwin’s Theory of Evolution

A species is a population of organisms that interbreeds and has fertile offspring.

Living organisms have descended with modifications from species that lived before them.

Natural selection explains how this evolution has happened:

More organisms are produced than can survive because of limited resources.

Organisms struggle for the necessities of life; there is competition for resources.

Individuals within a population vary in their traits; some of these traits are heritable — passed on to offspring.

Some variants are better adapted to survive and reproduce under local conditions than others.

Better-adapted individuals (the “fit enough”) are more likely to survive and reproduce, thereby passing on copies of their genes to the next generation.

Species whose individuals are best adapted survive; others become extinct.

Clearly I was fit enough to reproduce and survive to nurture my children and family. My son is now 35 and is the father of a little girl who is almost 3 and his wife is pregnant with twins. My daughter is 27, and is not yet married and has no children…yet. I hope she does get married and has a family someday. I think it will provide an anchor for her. I know that my becoming sick with Alzheimer’s has been devastating for her. I want her to have happiness and fulfillment.

I am remembering a woman I knew when I owned an art gallery in the late 1980’s. Her name was Angela and she was in her late twenties and worked for Prudential’s art program. She would come to my gallery and bought artworks for their collection. Angela was pregnant and I was later informed that she died after giving birth to her baby. A tragedy. Women still die in childbirth. Angela seemed so strong and healthy. I was shocked.

I was a survivor and adapted to so many new circumstances until I could no longer adapt. Alzheimer’s even in the earlier stages makes it hard to adapt. It’s a disease that is the antithesis of adaptation.

I wondered if there was any relationship between Darwin and Alzheimer’s and found this- The idea that neurodegenerative dementia may have something to do with evolution is not new. More than 20 years ago, Stanley Rapoport of the National Institutes of Health suggested that Alzheimer’s disease is a human phylogenetic disease, and that diseases such as AD and Down syndrome involve pathological changes in the specific genes, whatever they may be, responsible for the rapid evolution of the human brain (Med. Hypoth. 1989 29:147).

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My turn to go into the osteopath’s office, and I told him my story of being overwhelmed by Alzheimer’s, my diagnosis and now finding myself progressing rapidly in the disease. He had me lay down on his osteopathic bed and put his hands under my back and spine and under my head. He suggested I have my dental implants removed. I told him this was out of the question. He said my nervous system is overwhelmed. I asked him if he’d ever met anyone who had this disease. He said yes, a friend of his parents, and that this friend was traveling with his parents in Florida. I knew that this wasn’t likely someone who really has Alzheimer’s disease, at least not insofar as I understand and experience the disease. Maybe the person has mild cognitive impairment, but when it’s Alzheimer’s and there is real progression, regular vacations and life as it was are no longer possible. I wasn’t looking for any magic bullet in visiting this doctor. I know there is no cure. I went because I was curious and wanted to take this trip with Jeanne and Bob.  I was curious about what the doctor would say when he examined me. He wrote a note with directions for a breathing exercise- 1:2 ratio – inhalation – exhalation. Start with 2 seconds in, 4 seconds out, then 3 in and 6 out. Oh, if it were only that easy.  It was once. It used to be easy to do things like yoga breathing to calm my nervous system. I used to do alternate nostril breathing all the time. I knew how to rebalance myself before I got this disease.

Suddenly Mad- The Daze Osteopath Dr. Rubin_s office)

Next stop was our lunch at Mumford’s, a restaurant that Jeanne raves about. We drove down the road and got out and walked past a welcoming hellstrip  of day lilies. I followed Jeanne and Bob and we arrived at Mumford’s, a rustic old style restaurant. Inside the restaurant was crowded and the waitress tried to seat us at bar height tables, which would not have worked for me. I went on a hunt for a regular table with chairs and found one and asked if we could sit there. It was a little further away from the other tables behind a long display case filled with cakes, cookies and muffins. I rarely eat in restaurants now. At home I sit and eat at the long kitchen island, and I wear an adult bib my husband bought for me. I know now that eating in public is not easy for me. Neither is choosing something from the menu. Eating meals in general is rather complex now. Figuring out which utensils to use, cutting food, chewing, swallowing. Each step in the process requires concentration. I’ve seen how I’ve tried to cut food with the dull side of a knife. I remember panicking when I was confused about how to eat a half baked squash with a spoon and switch to eating vegetables and chicken which were on the same plate with a knife and fork. The salad I ordered had things in it I could cut with a knife and I put small pieces in my mouth and chewed, swallowed and sipped water to avoid choking. Using utensils at the table that were different from the ones at home took a few seconds of getting used to. A simple pleasure like going to a restaurant with friends for lunch and the act of eating is not something anyone thinks about. For me every step of everything I do requires thinking and processing. This I suppose is why I go so slowly and deliberately with every action I take.

Suddenly Mad- Walking to Mumford_sSuddenly Mad- The Daze (Mumford_s)Suddenly Mad- The Daze ( inside Mumford_s)

My husband hired another home health aide, Luiza, who is Armenian. She came the following day, Tuesday. My husband had a vacation day and was home too. I had met her the previous week, and understood she knows nothing about Alzheimer’s. My husband instructed her to clean our house, and showed her where the supplies are. When Krishna, the yoga teacher arrived, she watched us do yoga. I was used to Krishna coming and knew to retrieve the visitor parking permit when he left. I was standing at the front door and turned around and Luiza had followed me out. I was alarmed that she was hovering over me. I’m not a wanderer and don’t need to be hovered over. I got upset. After he left, Luiza asked me to play Scrabble with her (she calls it Swabble). I played with her and saw that she doesn’t know many English words. Frustration.

That same day my friend Ruth returned. She’d been gone for two weeks. When she left there was no way of knowing when she’d return. I thought she would move back to Atlanta. I was forlorn and having a hard time being alone so much. Then my husband hired a home health aide/companion, and Ruth was back. Before she left to visit her daughter in Atlanta (her daughter who she had been estranged from and was in bad shape called her and asked her to come), I had been spending nearly everyday with Ruth since we met several months ago. She’d come here and I would walk the half mile to her apartment. I didn’t want Luiza here, now that Ruth was back. My husband had been leaving me meals, and Ruth would remind me to eat. We would go for walks. We would talk. I know that Ruth is not a home health aide. She’s a friend. What I wanted was to be with a friend. Ruth understands the gravity of this disease and has seen me change in the 3 months she’s known me.

Luiza is hired to visit me and clean and cook. So far she is adept at cleaning and helps both Wayne and I by doing that. But when it comes to cooking, Wayne left her a list to make some chicken and told her not to fry it. I saw that she had cut it into strips and was frying it, and told me that some oil is good for me. She made rice with some weird stuff mixed in that was not discernible and it was terrible and I couldn’t eat it and had to throw most of it in the toilet and flush it. So what to do? She can’t cook and I can’t eat what she makes. It’s a problem. She doesn’t have any ideas about what to do with me. I emailed her The Alzheimer’s Resources Directory of New York http://www.adrcnyc.org/print-directory.pdf, in the hopes that maybe she would read it and arrange some things for us to do together. She drives and has a car. Wishful thinking.

I know that this disease is taking me down. Just getting dressed and going anywhere alone is problematic. Sure I can get to Ruth’s. It’s a good thing that I have a friend I can visit. But the reality is that my body is getting weaker and I sit a lot and the confusion and hodgepodge of symptoms is progressing. I can’t expect Luiza to be my savior, suddenly swoop in and motivate me and make sure I eat well when she can’t even cook. The disease is taking me down and there is nothing that anyone can do about it. Luiza sees me dressed. She doesn’t understand that I have to put my clothes on a hanger every night and bring it downstairs along with my shoes to dress the next day. I would feel so embarrassed if she had to dress me. I push and push to appear normal and dressed by the time she arrives, but I am not. I have lost many of my instrumental activities of daily living

  • Managing money (i.e., writing checks, handling cash, keeping a budget) (can write a check and handle small amounts of cash, but can’t keep a budget and generally can’t manage money)
  • Managing medications(i.e., taking the appropriate dose of medication at the right time) (so far I can manage my medications by checking off on my list after I’ve taken them).
  • Cooking (i.e., preparing meals or snacks, microwave/stove usage) (I can’t prepare meals, save for still being able to make scrambled eggs and toast. I can us the microwave but not the oven)
  • Housekeeping (i.e., performing light and heavy chores such as dusting or mowing the lawn) (ability to do housework is gone, save for being able to do a few dishes at a time)
  • Using appliances (i.e., using the telephone, television, or vacuum appropriately) (I can use my mobile phone, and can still work the remote control on my television. Vacuuming skill and use of the Dyson vacuum cleaner is confusing). 
  • Shopping (i.e., purchasing, discerning between items) (Not able to go shopping alone. Can discern between items). 
  • Extracurriculars (i.e., maintaining a hobby or some leisure activities) (I can still draw, and do yoga postures under direction)

So here are some things that I see I can still do-

I am still able to visit my son and his wife and Sat July 7 was my daughter-in-law’s birthday. Her mom and step father threw her a party and I handled it well. I was sociable and eating was no problem. I was nervous about going, but it went okay. People who don’t know me well would never have guessed I have Alzheimer’s or any impairments.

I am still able to go to my therapists office which is blocks from my house. I am still able to walk to Ruth’s.

I am still able to take the bus to New York with my husband, but walking through crowds to go to to the Alzheimer’s Association building requires a lot of support. My husband had to literally hold my arm and direct me and cross the street with me. I felt weak and walking that distance was hard.

I am still able to eat by myself. Use of utensils is intact. I am still able to dress and shower myself.

How long I will be able to do these things and keep pushing I do not know.

I write a list of the things I want to accomplish the next day. Most days little of it get done. Today my husband ordered some new clothes, shoes and bras for me online. I was able to direct the purchases. I miss the days when I could take care of myself. I miss me. The me that I was.

Tomorrow is the exhibit of photographs that I made along with the other members of the support group at The Alzheimer’s Association. I convinced my husband to take me. It’s in New York and a few blocks from the building where where the Alzheimer’s Association is located. I’ve invited Ruth to join us. I have to get to bed now. Before I go to bed i have to write my list and set up my clothes for tomorrow. Such simple things are daunting. I wish they weren’t.

 

 

 

 

Love at The Bitter End

Suddenly Mad- Love at the Bitter End - drawing of Mimi in the garden

Writing is a way of putting things in some kind of order. It’s the attempt to be seated in my soul and watch this thing, Alzheimer’s, unfold.

Thirteen days ago was Father’s Day. June 17, 2018. It was a beautiful sunny day. I photograph with my iPhone and took a snapshot of my daughter. The drawing was made by looking at that photograph. It doesn’t do her lithe beauty justice, but I tried to capture her likeness. She looks like her papa. Oblong face and and graceful long limbs.

Father’s Day. It was an emotional day. First my son arrived alone, without his wife and baby daughter. I felt so much love for him in that moment, as soon as I saw him and hugged him. On this day I was glad to have a few brief moments alone with him. When my daughter arrived, she presented a gift to her dad. Japanese pajamas from Muji. A navy blue ensemble with a top that ties around the waist, and pants that grace the top of the calf. He went upstairs and put them on his tall and lanky frame. The fit was perfect. As the kids and I sat in the backyard garden, he watered the flowers and plants. Then my daughter and husband went out for a walk, leaving me alone with my son. We sat inside at our large glass dining table and looked at photographs I have kept in a box for a long time. Photographs I had intended to put into albums and never got around to doing. Photographs of him as a baby, his childhood, my daughter’s childhood, birthday parties and cakes with candles, the years my son gave piano recitals – Rachmaninoff, Beethoven, the Chopin Etudes. Photos of the relatives. Happy times together. Victories. Our little glories.

Many of the people in the photos who were so important to us are gone now; my mother-in-law Edith, who died two years ago at age 94 with late onset Alzheimer’s. She was the glue who held the family together. There were photos of her younger brother the beloved uncle Jerome,  who was a brilliant historian, his mind sharp but his body unable to withstand the ravages of illness after illness. Pictures of Milton, my husband’s father who was always so kind to me. He always wanted to be a writer and finally had time to write when he retired. But retirement was brief. He died at age 70 of a massive heart attack, after walking up a hill to fetch a copy of The New York Times. The photos of my sister and her children reminded me of when things were were still congenial between us, and our parents were alive. Photos of my parents from our visits with them in Miami Beach. Photos of them in Hallandale, Florida. Life had promise and endurance.

How could a disease like this happen which abruptly changed everything? How long was this brewing in my brain? I call this time period I am living in now – love at the bitter end. I know that my memory and functionality is being erased by an insidious disease and I am holding on as tightly as I can by writing and remembering.

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The days that followed included an experience at Ruth’s apartment that was frightening. Last Monday soon after I got there, I had to lay down on her bed, and had so much trouble standing and walking, that she attempted to wheel me on the seat of her walker when it was time to go. I called my husband to come and fetch me and take me home, but I couldn’t get up. I couldn’t stand. He had trouble believing me and began to lose his patience. He said he was going to set the alarm on his phone and give me three minutes. I started to panic and cry.  I felt like I was unable to walk. For a few minutes I couldn’t get my body to respond to my own command to get up and walk, though I was telling myself to. When I finally was able to stand, I stumbled down the hall to the elevator where my husband was waiting in the lobby. It was pouring rain outside. He told me it was going to stop, and we could wait it out in the lobby. It did stop raining, and although walking was harder than it had been going there, I was able to walk home holding onto his arm. Prelude to this – my neurologist wanted me to double the cognitive medication Rivastigmine, and I took 2 capsules that day instead of the one I had been taking. The next day my husband called him and told his staff what had happened after I increased the dose. The call back from his nurse practitioner was that if this is how I reacted to the increased dose, I should go back to one capsule. I’ve been taking this medication for a year and a half. I doubt it’s slowed my progression. If anything it seems to have speeded it up. Who knows? I do know there are a host of side effects including Bradicardia (slowed heart beat) and nausea. I’ve noticed that I’ve developed reflux since starting it, and never had that before. It took days to recover and feel somewhat normal in my gait and ability to walk.

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suddenly-mad-triumph-or-alzheimer_s-or-alzheimer_s-close-up-of-ruthie-e1530137434489.jpg

Ruth my friend and confidant has left for Atlanta. Abruptly. She called me on the phone on Monday morning and told me her 48 year old daughter called her and told her she hasn’t been in bed for 3 and 1/2 months. She’s been estranged from her daughter for years. Ruth thinks it’s depression and PTSD, and she bought a plane ticket and left. Gone in a flash. I came to depend on Ruth very quickly as she offered companionship instantly after we met. I would go to her apartment across town, and we would spend time together, almost every day. She saw me have good days and many bad days.

Her presence helped assure me that I would still get around, visit her and we would do things together. Left to my own devices I sit so damned much. There is such a sense of gravity pulling me down (makes me think of the phrase, a body in motion remains in motions, a body at rest remains in rest). Her presence gave me the impetus to push myself. We would go to the bank together where I deposited small checks, and saw that I had not forgotten how to use the ATM, and still knew my pin number. We walked to her veterinarian to pick up medicine for her cat, Gigi, and it helped me orient myself with landmarks I have known for over forty years in this small city. I was devastated when she told me she was leaving. Such is dependence in Alzheimer’s. One gets needy. This is childlike regression in a body and brain that is losing it’s motherboard.

She helped to keep me going. Now she’s gone, and I have no idea when she will return and what I’ll be like when she does get back. It could be months. I now have to find new ways to fill my days. I was so productive before this horrible disease overtook me. I wasn’t always happy but I was okay. Now I am not okay.

My daughter who I love will not have me around when she’s 48. I envy Ruth in having this closure with a daughter who has been estranged from her for many years. She got to heal the dysfunctional relationship by showing up for her daughter in her time of need.

I wish my daughter would take some time to be with me now, even though I can’t be the mom she knew who could take care of her. I love her, and wish she would understand the nature of time passing, and how ephemeral things are. I may not be able to speak or walk or talk later, if I’m still around. It’s already getting very hard to do those things. I reach for her now. I know I try too hard to hold on. It’s very painful for her to be with me now. It pains me to know that.

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Suddenly Mad- Love at the Bitter End La Lanterna di Vitoria Cafe menu

Jackie is a very dear friend who I wish lived in this city!  She is the chair of Dementia Action Alliance and she and her husband live about an hour away in New Jersey. Jackie frequently Zoom chats with me, and consoles me when there was no one else around and I have been full of worry and regret. She and her husband Lon took me to New York on Monday to attend a panel discussion held at New York University called Being Human.

The photograph is from the menu of the restaurant we went to in Greenwich Village. We ordered pizza and eating was no problem, though I thought it would be problematic. At home when I eat, I forget how much I am putting in my mouth, and swallowing has become a problem. Yet eating a few slices of pizza was easy. (That’s part of Alzheimer’s, eating and swallowing. It’s something I always did easily of course. But now this too is frequently hard and takes concentration to do. I literally have to focus on being able to swallow. It’s called dysphagia https://www.agingcare.com/articles/dysphagia-how-to-help-a-loved-one-eat-and-drink-safely-187010.htm and usually happens in late stage. Stages be damned. I’m not in late stage and it’s happening to me now. I don’t think I would be able to write about this if I was in late stage Alzheimer’s, but who knows, this is such a weird disease.

From the restaurant we walked to the NYU School of Law, but still had time to walk around before the program began, and I wanted to get my bearings. We headed up Washington Square West where I saw a powerfully built looking man doing pull ups on a horizontal pole. I looked in the distance and thought I saw 8th Street. Jackie confirmed that that’s what the street sign said. We walked towards it and it’s then that I understood where I was. I had for so many years walked on 8th Street, shopped there for shoes (it used to be littered with shoe stores). I wanted to show Jackie and Lon how Washington Square connected to 6th Ave. and that’s where I would take the PATH train to home. What I understood at that moment was that my conception of the streets and mapping out my location was fragmented. I can find my way when I am extremely familiar with routes I have taken in the past. New locations are now daunting and my fear of getting lost now is what is keeping me from venturing out alone (that and usually having no where to go along with wobbly legs, the fear of falling, and an aversion to crowds and to loud sounds).

Standing on 6th Ave across the street from the PATH train I’d taken hundreds of times, was bittersweet. I was glad to have found my way there to show Jackie, but I hadn’t been there in over two years. It is during these two years I have progressed in this disease. I stared at Citarella on the corner. This is where I shopped when I was in this neighborhood. I used to buy herring, vegetables, fish, cheese, bread and olives there. I used to have a great appetite. As I stood across the street from Citarella and the PATH entrance on 9th street, it felt like I was the ghost of my former self. We headed back down 6th Ave. and then onto 8th Street and turned back onto Washington Square West where we passed a the same very muscular strong bodied man with no shirt on, doing pull ups on a pole.

Suddenly Mad- Love at the Bitter End - NYU Law Building across from Washington Square Park

In the  lecture hall, in the law building at NYU, the panelists were seated and introduced themselves after Mary Fridley, the moderator spoke. She is pro-bono director of The East Side Institute http://eastsideinstitute.org/

Suddenly Mad- Love at the Bitter End - Being Human panel discussion with Mary Fridley, Mary Radowsky, Susan Massad and an art therapist and recreation therapist

The talk aimed to change the “tragedy narrative” that distorts how people living along the dementia spectrum are seen. I know one of the presenters/ panel participants from participating in bi-weekly Zoom chats on Dementia Mentors. She is Mary Radnofsky, a former college professor president of the Socrates Institute. Mary is the first person with dementia to advocate at the UN for the human rights of people living with dementia. Her dementia is caused by subcortical leukoencephalopathy, also known as Binswager’s disease. It’s a form of small vessel vascular dementia caused by damage to the white brain matter. She does not have Alzheimer’s. She travels with Benji, her service dog, who is her constant companion.

Suddenly Mad- Love at the Bitter End - Mary Radnofsky and Benji

The other panelists included Susan Massad, who is a retired primary care physician with 51 years of practice experience. She launched New Timers, a senior theater workshop, and is an East Side Institute faculty member. She has a sister who lives in California who has Alzheimer’s. The youngest panelists, were Nettie Harper who is a recreation therapist, and Katherine Houpt who is an art therapist working in Chicago.

A woman in the audience named June, who I later introduced myself to, told the story of her sister who had younger onset Alzheimer’s. Her sister was in her late fifties when it started and she lived until her early seventies. I sent her my blog, and she wrote me that I’m a fine writer, and that what I am going through sounds very hard and painful and lonely. She wrote that she hopes I can build with Susan Massad and Mary Fridley and others who are trying to change the tragedy narrative of dementia. She wrote that maybe I can do that with them.  She said maybe this will help me.

The discussion centered around the effort to be inclusive and understand that people, even those in later stages of dementia are human, have feelings and are capable of creativity and self expression. Being treated with dignity and respect should always be the goal, and as evidence of this Nettie Harper recalled an Alzheimer’s patient at a facility who the aides complained about as a person who bites and hits and can’t speak. Nettie said she approached the woman and extended her hand. The woman spoke with her and was pleasant and communicative. There was a huge disconnect for Nettie with the way this woman was described to her and what her experience of meeting her was. Having been told that the woman was a biter and hitter, she wondered what actions the aides took with her to elicit this response. Surely the way they related to her, probably  forcibly trying to get her do things like bathe when they wanted her to, must have irked her. Nettie saw that her approach to this woman evoked a positive response, and wondered if the brusque treatment is what characterized her as hostile.

People are not trained to be understanding and patient when dealing with dementia patients. What goes on behind the closed doors of Alzheimer’s units is disgraceful because the aides are overwhelmed in caring for dozens of patients and approach their jobs as assembly lines in which people have to be bathed and changed and fed. These workers, paid on the low end of the scale, are already disgruntled. Given a patient who needs more time and needs to be approached with tender loving care does not typically fit into the time frame of harried underpaid nurses aides.

The problem is a system that warehouses people with dementia, is owned by corporations with underpaid staff who don’t care and expect the patient to be compliant. When they’re not compliant, they are deemed difficult and often medicated to control their behavior. Dignity is not routinely offered to dementia patients. For this people pay upwards of $10,000. a month and much more. I’ve read about patients walking around with feces on their clothes and all over their rooms on www.alzconnected.org in the spouse forum.

Changing the tragedy narrative must include changing the attitude of caregivers who warehouse their loved ones when their care becomes overwhelming. Anything less is putting a Pollyanna face on these horrible terminal diseases and what is needed to create an attitude of respect and dignity.

Changing the tragedy narrative involves so much more than art therapy and recreational therapy. This just tries to sugarcoat the situation and close the closet door on a monster who won’t stay in the closet. I’m all for recreation and creative programs for people with Alzheimer’s and dementia. However, institutionalized care of people who have Alzheimer’s and dementia is routinely hideous in most facilities. Yes, let’s accept the fact that people with dementia are human. That would be a start.

As for people in the earlier to moderate stages like me, who are intent on never going to a nursing home, know that every day we have to outmaneuver this insidious demon, until it overtakes us. Give us the dignity and respect and provide us with kind and considerate care. Don’t warehouse us with untrained workers who are overwhelmed with caring for dozens of dementia patients. Find another way.

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Suddenly Mad- Love at The Bitter End (The Bitter End Cafe)

We passed The Bitter End Cafe on Bleeker Street, on our way to West 3rd Street to get Lon and Jackie’s car for the ride back to New Jersey. It began as a folk music venue in 1961, and became famous for hosting performers like Joan Baez, Joni Mitchell, John Denver, Bob Dylan, Judy Collins, Odetta, Neil Young, Pete Seeger, Peter, Paul and Mary,  and Phil Ochs, and comedians like Woody Allen. During its heyday the Bitter End showcased a wide range of talented and legendary musicians, comedians, and theatrical performers. The name of the cafe says it all. The Bitter End – to the limit of one’s efforts – to the last extremity.

I’ve gone the distance and exceeded the threshold it seems. I’m not that old and yet I am at the bitter end. Next stop – Heaven’s Gate.

 

 

The Moral of the Story

 

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The slides are some of my drawings from the past year. They chronicle a personal visual history of my progression in Alzheimer’s since last summer. A year has passed and I am now retired, having resigned from my position as the chair and head teacher of the art and art history department of the private school where I taught for twenty years. I had also been an adjunct professor at New York University. I was working on an amazing  film project begun as a Fulbright to Poland. My editor had cut a great film from the 35mm footage my crew shot in Poland from my original story inspired by a true story about a dwarf who was my late father’s friend, and survived the Holocaust by hiding in garbage cans. I had completed a great script. I believed I would get this movie made https://vimeo.com/91234297

My life stopped with this disease. I lost my friends. Lost my long time therapist who I had seen for nine years. I lost the respect of my husband, my children. I could no longer be the woman I was. The capable professional, adoring and stylish mother who laughed and gave endlessly of herself was no longer that person. I stopped being able to go food shopping and cook, couldn’t prepare meals, began to have trouble dressing myself. My personality changed. It all happened so fast. I lost my identity! I still had the same name and address and telephone number, but I became someone else. An alien to myself. I felt like a monster had invaded my body. I thought an alien had abducted my brain. I receive Social Security compassionate care allowance now for early onset Alzheimer’s and seek activities and friends who will not shun a person with this dreadful disease.

*****

 

On Friday I went by myself to The Rubin Museum’s Mindfulness Connection’s program for people with dementia. It’s on the third Friday of every month. This was the second time I’d been to the city by myself in almost two years and was the second time I went to Rubin alone. I’ve been attending since October 2017. Ten months. First my daughter took me, then Jill, the young woman who worked as my companion for several months. She quit. Then Keith who I hired as my companion, took me four times, from January through April of this year, 2018. Then Keith quit. I was not going to let that stop me. My husband works on Fridays. He can’t drop everything and take me. I know the route, and in May pushed myself to go alone, though I had a great deal of anxiety about it. The first time there was a sense of triumph. On Friday, I did it again. Though the disease is fast progressing in me (physical symptoms as well as cognitive with agitation/anxiety and depression), and there has been sleep breakage for over two years (I have not had over four hours of continuous sleep in that amount of time), and I am slow and confused about so many things, I’m a fighter, and this is how I am fighting the disease. By not allowing my impairments to rule me constantly and yet they do. It’s paradoxical. It’s hellish. The disease wants me to stop pushing. I can only fight by pushing back. There is a heaviness, a sense of gravity pulling me down. My agility is gone. I feel like I lumber when I walk, and am wobbly. Nevertheless I push.

Suddenly Mad- The Moral of the Story - on the PATH train going myself to Rubin (photographing my reflection)

Here I am on the PATH train, my image reflected in the glass on the door on route to the 14th Street station. I know the route and it’s not a matter of not knowing where to go. It’s the journey that is daunting. I am anxious about being outside. Rudderless. I am slow and everyone passes me. I let them pass, knowing I need more time. I’m not sure whether to stand up when the train reaches the stop, or wait until the doors open and make a fast dash to the door. Indecisive. The slanted step I am not expecting, as I climb the two flights up after arriving, is dealt with. I notice the construction going on at the opposite side of the street, and have to cross the traffic intersection the other way. No big deal, but for a person with Alzheimer’s, any change in what is expected can present an obstacle.

Lin was there when I arrived. She tells me her husband passed away last month and he had Alzheimer’s. She is grieving, but is extremely dignified, composes herself before she becomes tearful as she tells me about him. A pretty, energetic woman, with short cropped white hair, she is volunteering and her compassionate presence is welcome. I showed her my new Medic Alert bracelet, as she had expressed concern last month when I arrived alone and I didn’t have one. It is engraved with the words – Alzheimer’s, Memory Impaired, Allergic to Penicillin, and numbers identifying me to a national service if I get lost.

Across from Lin sat Amelia and her aide, Ray. Amelia looks much younger than her age (75, Ray tells me). She is wearing a hat, a paisley blue and white blouse, hoop earrings, a beaded necklace, a pair of new burgundy New Balance sneakers.  Ray tells me Amelia  was a ballerina and that she had four miscarriages, and has no children, but is married. I introduce myself to her. I immediately find out there is not much Amelia can do. She speaks a few words, but Ray tells me that she is incontinent and under her stretch jeans, I notice the bulge of her diaper. Ray tells me she can’t feed her self. Obviously she doesn’t dress herself either. I may be a little unkempt, but I dress myself, and though it is getting harder, I manage to groom myself and put on some makeup. Amelia says something to me, but I don’t understand what the words are. Ray tells me she said she likes me.

I smile and get up and make my way over to Michael, who has arrived with his aide Georgia, and is seated in his wheelchair, dressed in a spiffy navy polo shirt, jeans and a white baseball cap. I make eye contact when I say say hello, and tell him how much I wish we could have a conversation. He is alert, receptive and tries to speak, but no audible words come out. With Michael, I sense the intelligence, or something about his former personality, a vibrancy, behind all the impairment. He is clearly in late stage dementia, but there is so much desire in him to try and communicate. I’ve seen him when he was depressed and much more withdrawn. That was when his aide, Jaime left, and was replaced by Georgia. Yesterday he looked brighter, more aware than before. Somewhat able to be reached by my words and communication. Michael was a lawyer, and I know he’s a well off man who is financially  prepared for affording his care. His children hired Georgia, who is an excellent aide. He lives in a beautiful part of Manhattan. She takes him to a program through NYU where they work with him, providing cognitive remediation, and I can see Michael is trying. That is the will to live. I see it in Michael. I see the effort he makes to communicate. I see the pride in Georgia that he is learning to say a few words.

Alzheimer’s and what it does to a person is cruel, beyond cruel. Here I am in a much earlier stage of this horrible disease and seeing Michael and Amelia, I know this is not the future I want for myself. Yet the only option has been to to go on each day, or end this while I still can. If I wait too long, I will not have the option. I am hoping something else takes me before I become hopelessly unable to make a choice. Of course we all die. But there is a reason this is the most dreaded disease of all. It’s a relentless monster that takes and takes and takes away everything from a person that makes them who they are. Words, thoughts, personality, mobility, the ability to eat, chew, swallow, piece by piece, the essence of what makes a person who they are is destroyed. I describe it here, and I think I do it very well. I think it’s important to be honest about the ravages of this disease. When it’s really Alzheimer’s it only gets worse. Because I am so aware of details, I use this forum to elucidate exactly what I see. Meeting Amelia was more difficult for me, even harder than seeing Michael in his wheelchair. When it was time to go upstairs to view and discuss the artworks, Amelia needed help coming to a standing position, needed help to get out of the chair and walk (which she can do). It took both Ray and Lin to get her to stand up and turn. Once she was standing up she was able to walk to the elevator and be directed to get on.

Another man, Steve, tall and sturdy with grey hair, wearing a turquoise polo, khaki pants and sneakers (I photograph with my iPhone to remember what I see. It’s because of these  photographs that I can describe these details). Steve got on the elevator to join our group. He was accompanied by his aide. He was conversant and clearly in an earlier stage than Amelia. I asked his aide if he dresses himself. She said his wife lays out clean clothes for him to dress. He said something funny and the people on the elevator laughed. It didn’t register with me. I wish it had. I want to laugh. I’m so humorless. It’s the one thing I miss the most.

*****

Suddenly Mad- The Moral of the Story - Wheel of Life at Rubin

Jeremy and Dawnette gathered us around the composition called The Wheel of Life. I initially faced the TV monitor with an ad about the museum on the screen. I was not orienting myself until Jeremy redirected me to turn my folding metal and fabric chair, and look at the painting. It’s things like this that make me see how disoriented I am. I’m out of sync.

It is said that Wheel of Life was designed by Buddha himself and illustrates his fundamental insights into the nature of existence, rebirth and the cycle of unenlightened existence called samsara. The painting’s details are supposed to remind us of the benefits of positive actions and the dangers of accumulating bad karma through negative actions. I thought of the ominous email message I received from my sister the previous day (and then found out from her that it was my brother in law who actually wrote it). It was nasty and suggested I have this disease because of my karma. But is it true? Did my brother in law get his own long term chronic physical illness because of bad karma? Did Michael end up in late stage Alzheimer’s because of his karma? Did Amelia end up as she is now, progressing in this horrible disease because of karma? There are so many tragedies that the human condition is fraught with. Do the lucky ones prevail because of good karma?

How I wish my sister would have cared enough to come and see me upon learning I have Alzheimer’s. She’s probably afraid to see me. It’s so much easier not to.

How sorry I am for any ill will I have communicated to loved ones and friends. I am sorry for being a fighter, holding onto anger, and not having the will power to walk away. I was abused in my family of origin, abused and neglected. I have been hurt a lot, and when I was well I had the resilience to move on, to value myself and put my energy into positive action. Now I have little energy, little energy to move my body. I have endured blow after blow, loss upon loss. Is this my karma?

I ask G-d for forgiveness for being the ogre that my family has found me to be. I ask for forgiveness from each of them if I have in ways created a karma which made me get this disease, and has made me a burden to my husband and children. I wish it hadn’t happened. Forgive me if I have brought this upon us through my own karma. I wish to be released from the vicious cycle of negative action and thought.

Suddenly Mad- The Moral of the Story - Jeremy docent in front of film projection with offerings of incenseJeremy brought us up to the third floor where we sat in front of two screens projecting images of a Himalayan ritual in which people burned incense as an offering. In Buddhism this is a sacred offering. The burning of incense results in fragrant smoke and teaches the necessity to burn away negative qualities within oneself in order to reveal the pure self within.

I sat next to Ira and his wife Sandy (who has dementia) as we looked at the projections. He is devoted to her care. They were a professional team throughout their marriage, and now are a team living life, together accepting the changes in Sandy, and managing their days by going dancing, attending concerts, visiting museums – filling their days with as much joy as they can. What I see in Ira is that he faces his life with courage, confidence and kindness.  I also see the strain he experiences, but his spirit enables him to be warmhearted, friendly and considerate. It’s a choice to be this sort of person.

Suddenly Mad- The Moral of the story - Rip Van WinkleWhich brings me to Rip Van Winkle. I have begun reading  from a collection of the best known and memorable short stories by great American writers. Rip Van Winkle is a ne’er-do-well who sleeps 20 years and upon waking is startled to find how much the world has changed. Washington Irving the author, shows us that Rip Van Winkle is a character who always has been, is, and always will be. There are millions of people around the world who take his nonchalant view of life, his uncaring, unmotivated attitude and accomplish absolutely nothing. Rip is an icon of the stagnant, the lazy, and the useless. He is the person who goes through life never fully living it and before he knows it, is old and dying wondering where has the time gone.
I was never like Rip Van Winkle, but in Alzheimer’s have seen that I’ve been robbed of my former motivation and lust for life. I’ve become like him, as I had to give up my passions and my work because I could no longer do these things. I do not like the person I have become in this disease. Lazy, self absorbed and fearful. I used to think I’d never retire. I had ideas,  creativity and boundless energy. I was devoted to my children, my teaching and creating art and films, and suddenly the meaning in my life is gone. Poof. Everything that I treasured and had meaning changed. I was independent. Forced to retire, I have had to fight the disease and find new motivation, and it’s been extremely hard to do.  Some of my dementia buddies I meet with on Zoom chat have poured themselves into advocating for people with dementia to have a voice. They advocate for changing laws and are speakers at conventions that show that there is life after diagnosis.

In my way, I do that here in this blog by sharing my thoughts and experiences, my consternation about the stigma of the disease, and how people treat those who have a dementia diagnosis. I share my battle with this treacherous disease, and how people with it manage their lives with caregivers, aides and support. I rail against the system that medicates dementia, and places us in nursing homes, removing us from our communities, our families and friends.

My life is very small now and I do need a good deal of support. There are real fears that involve progression of the disease. But as long as I can, I will continue to find a way to share, and learn and teach.

Suddenly Mad- The Moral of the Story - walking back home from Ruth_s

This is the view as I walk down my street on my way home after visiting my friend Ruth. I am honored that she is my friend. She teaches me with her kindness and acceptance what friendship is. I tell her she is my friend at the end. She allows me to be who I am now and accepts the reality of the changing nature of my impairments. She teaches me acceptance. It’s the hardest lesson to learn. For anyone.

Flummoxed

Suddenly Mad- Flummoxed (kite in the sky 1)Knowing that you do not know is the best.

Not knowing that you do not know is an illness.

Truly, only those who see illness as illness

Can avoid illness.

The sage is not ill,

Because he sees illness as illness.

Therefore he is not ill.

Lao Tzu 

I am humbled by the words of Lao Tzu, but I am not a sage. I have an illness and I am aware and know it has robbed me of the life I have had. I know I am progressing in this illness. I do not know when I will not know this.

******

For the thing which 

I greatly feared is come upon me, 

and that which I was afraid of 

Is come unto me. 

I was not in safety, neither had I rest, neither was I quiet; 

yet trouble came. 

--Job

It’s been over two weeks since I went to New York by myself to the Rubin museum program for people with dementia. The glow of independence that came with the courage to venture out alone and travel there, has dimmed. The days following that spark of triumph, I sank.

Keith is gone, and with him the regularity of walks and Scrabble, speaking Yiddish, and hearing his stories.

One friend I love, who was visiting me for months, has told me he is taking a break.

Great sadness followed. Please know how important seeing your smile is to me. While it’s the prerogative of people to disengage from difficult situations, please know that people with dementia need more friendship, not less.

*****

Abandonment. I had a mother who was not able to find comfort in herself. She would get up at night when everyone would go to sleep, and pace the floor in the living room, wailing into the night. It was relentless. I would hold my hands over my ears until sleep overtook me. She was inconsolable. I did not know it was dementia. I thought she was crazy. Is it the same thing? It is said that dementia robs a person of their normal emotional self-control.

I should not have covered my ears when my late mother railed into the night. I should have gotten up and led her gently back to bed. Gentleness and communication. Not disciplinary action. Not withdrawal. Do not abandon the person who has dementia.

*****

I’ve questioned my husband, “Do you want to sell the house and then place me into a facility for people who have Alzheimer’s in Connecticut? Is that what you want”? He says yes let’s go there and see it. At times he is at the point where he willing to sell our home and place me. I am not incontinent, can dress myself and feed myself. I’m oriented and find my way around. Of course, I don’t want to go, but being yelled at and called the word that rhymes with witch, left alone to sit in silence, eat in silence, never a touch or a hug from the man I married, makes me forlorn. Wouldn’t it make you forlorn to be treated in such a manner?

I fear placement. But he is not able to deal with my dementia, and the disease only gets worse. What to do? I read the posts from spouses on www.alzconnected.org  who run out of energy and compassion. They become depressed, remove themselves emotionally and place their spouse if they have the money to do so or have worked out the insurance. A few of the religious ones who have the spark of spirituality and love in their hearts, seem to be able to weather the storm of this horrible illness, get help at home and keep going. They know it’s not the person’s fault that they got this disease. They walk the walk, and know they are walking the person home.

*****

So I’ve learned to give him his space and stay away from him when he needs to rest. He texts me to check on me. He’s a great texter. Sometimes he lets me know he is on a different floor in our home by texting me. He has a way to follow me on his phone. He is watching from afar.

His back has been very bad, and he has gone to the chiropractor, gone to a physical therapist, had acupuncture. He has done things that have aggravated his condition. He seesaws between self-destruction and self-care. I am a constant presence and he tries to escape it by shutting himself away.

*****

My daughter. Be patient I beg. Of course, she can not possibly comprehend what I am experiencing and she is angry and tormented herself, having lost the ballast of her ship, her mother, lost the mother she knew, replaced by this alien being that is the me I have become and am becoming. She recommends hiring another caregiver. She wants little to do with this. When she comes here she is stern and demanding that I comply. Has told me that her father should have left already. She is so angry. It’s all so unfair, I know. If she knew anything about the progression of Alzheimer’s, how could she, my own flesh and blood, say he should have left?

I watch her flee, I call out…”I am still here…I am so sorry”.

*****

I have to live with this. There is no one who is going to save me. Clinging is not the answer. No one is going to save me. Friends and family can only stand by and hold my hand, temporarily.

I have compared myself to those who do not act as I do and say they have been diagnosed with this disease. They are calm and have a sense of humor. One of them says that a pity party will be a lonely place to be, because no one shows up for that party. He is right. So why can’t I be more like him?  Probably because he’s at a much earlier stage in the disease.

I’ve seen the ones who are further progressed with their home health aids, or caregiver/ spouses who cart them around. They could not possibly live alone without assistance. I know the difference between progressing Alzheimer’s and mild cognitive impairment. I have the former. Yet I am maintaining as much independence as I can, because I want to remain in my home and be able to live in my community. The alternative is the specter of selling my house and putting myself in the hands of an institution that will take over my care. I will be unfamiliar with the place. Will probably be medicated.  I will not be able to walk to familiar places by myself as I do now, will not be familiar with anyone and will lose what little freedom is left.

*****

There are no home health aids coming to my home now. For now it’s better this way. Ruth has been coming over to see me several times a week, both when my husband is here as well as when he’s not, and has invited me to her apartment, where I finally have a destination in this town. It’s been great and I am thankful to have a friend I can visit who is so welcoming and accepting. Today I went there in the early evening. Yesterday she came over and I read to her, then we walked to the bank and I  deposited a small check to my bank account, used my ATM card successfully,  remembering my pin number and handling this as I had in the days when going to the bank was no sweat. I showed her where we used to live when my husband and I first moved here, and reminisced  about taking my son who was three years old out for Halloween trick or treating. I had dressed him as a carrot, made a hat for him out of oaktag that I cut out and painted to look like carrot leaves, and I dressed him in orange clothes.

We were walking along the main street and I saw a man who I’ve known for 35 years, who has a daughter who is my son’s age. I met him when he was married to her mother and our babies attended the same play group. He divorced her and remarried a woman with the same name as his first wife, and had two sons, both of whom were my art students. I said hello and he came over offering to catch up with me about our lives. I smiled and said it was too complicated to get into. No announcement that I have Alzheimer’s. I don’t have a close relationship with him, never did. Running into him on the street was quick and pleasant. His life is going swimmingly I can see. His sons are brilliant and talented and his wife, a musician, owns the coolest bookstore in town which has become the center of all things artistic, literary and musical. No sense burdening him with my story. A wise choice. Ruth and I walked up Stevens Tech hill to Castle Point terrace through Elysian park and over to 11th Street and turned towards the river and over to her apartment building. She uses a walker but it doesn’t stop her from being adventurous, active and going places.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (close up of Ruthie)

Before this happened, I was always having an adventure. Life was an adventure. The highs and lows. I was able to ride the crest. I was sailing, tossed on the sea of life, and always regained my balance. I was a teacher, a mentor, took many of my students to Europe several times – to Italy, to Greece and France. After my husband moved to Connecticut, I would venture out boldly. The documentary I directed and produced led to the Fulbright in Poland, a full year there living in the former Jewish ghetto in Lodz, teaching at the university, organizing a film production. After that there were presentations in Israel where I met long-lost cousins and saw Jerusalem and Tel Aviv. Then back to teaching here followed by more presentations in Poland, in France and Israel. I was intrepid. Until 2014. That was the last independent trip. I was invited to present the Lilliput project at The University of Jerusalem, and was intent on finally finding a producer for the film. The film that was to be my breakthrough movie became my downfall. The film about a dwarf who hid in garbage cans during the Holocaust and survived, based on a true story about a little person who had been my father’s friend from Gombin. The film that was inspired by seeing this dwarf’s photograph on my parents dresser as a young child. I had driven myself crazy trying to attain a goal I could not achieve. Curiosity killed the cat. It would have been great  https://vimeo.com/91234297

*****

I love my children and they loved me, when I was well. But they no longer needed me, when they were ready to leave the nest. Empty nest syndrome. The deep mourning I felt when they both moved away and didn’t need me anymore. That was between 2012-2013 and I became depressed. I so identified with being their mom. I had been cast aside by a husband who was never really able to find solace in being with me, living as he did for nine years in another state, and visiting me for a day or two on the weekend. Then he returned. He returned after I had done all the heavy lifting, and the kids were launched.

After years of finding ways to manage by myself. Renting bedrooms to Chinese engineering students to make ends meet. Working two jobs, one as an art and art history teacher, and another as an adjunct at NYU. Managing the house and overseeing the rentals to tenants. My son got married. My daughter moved in with her boyfriend. My sister refused to honor my late father’s will. She refused to have his will probated. She simply kept everything.  She railed at me “you killed mommy”, after I tried so hard to help, flying to Florida to see her every two weeks for the two years. She was in the hospital and in very late stage for two years after a stroke brought on by being administered doses of Haldol. I brought my father to New York so that he would not be alone in Florida. He was in failing health, and I asked him to come and live with me and my family. He decided to live in my sister’s  home. She was his favorite. He paid off her mortgage, made her the executor of his estate, built an addition to her home. I had to have surgery, a myomectomy for a bleeding fibroid in which I lost 50% of the blood in my body and my hematocrit went down to 5.3. My sister didn’t believe I was having major surgery.  I had a job and was recovering and when I was able to see my father she would listen to our conversations on a baby monitor she installed in his room. I took him to Columbia Presbyterian hospital where the doctor told me she was overmedicating his Parkinson’s disease and that he was hallucinating. He did not want to live with me. He made that choice. My mother died in 2001 two weeks before 9/11 of pneumonia and late stage dementia, and my father died in August 2006 of cardiac arrest. My sister was in her ultra Orthodox Jewish phase then, and sat on a low box during the Shiva. She called out loudly to me in front of a group of people who had come to pay their respects, “Don’t come here to collect!” These are things I remember, and they are the truth.

I was exiled in my family of origin, and I am now exiled within my own family, the one my husband and I created, because of this disease.

******

We were flooded in Hurricane Sandy. One of the worst homes flooded here. We had rebuilt the downstairs, fought with the insurance company which tried to cheat us, had to take out a home equity loan, finally had rebuilt everything on the ground floor, everything was ruined. We contracted a beautiful new kitchen, bathroom, new appliances, a generator and sump pumps installed. I had previously dealt with three termite infestations (the pesticides likely impacting me and potentially contributing to the development of Alzheimer’s, along with multiple anticholinergic medications prescribed by psychiatrists that I should never have been on). I thought the worst was behind us. I hired a young man, a friend of my daughter’s boyfriend to plant a beautiful garden in the backyard. My son got married and bought a house in the suburbs. My daughter started to freelance at a multimedia media company and was climbing the rungs. Everything was going to be okay. The house was manageable. The kids had their lives. My husband finally bought a car after years of taking the Metro North to visit me on weekends. His plan was to work remotely two days a week and drive to Connecticut the other three. He moved back. I was working. And then this happened. Not all at once. First came the depression and anxiety. A changed sense of my reality. By the summer of 2015 I felt that my thinking was scattered. My personality which was never easy, changed and I could not bear the anxiety. I had been weight training and exercising but no amount of exercise calmed me. I became angry with him for having abandoned me for 9 years and here was back as if that had never happened. I could not adjust to his presence. Then the medications for depression and Ativan and Klonopin and a paradoxical reaction in which I lost my formerly normal sleep cycle and made me stutter. Detox from the meds and then a downward spiral that ended with the diagnosis of Alzheimer’s and progression.

Suddenlymad FlummoxedI do remember telling him that instead of moving back, I wanted to move with him to somewhere in Connecticut. I no longer wanted to work. I was burned out. I had been pushing myself beyond the brink. He thought it was odd that I wanted to move there, and he moved back. I know now that this was developing for a long time. The preclinical phase can go on for a decade or longer. I was under way too much stress for far too long. The dam broke.

Suddenly Mad- Flummoxed (sad New Yorker) maybe homeless)

*****

I wonder how long this has been brewing. This disease. There were signs. I remember once walking through Church Square park and looking down the street towards the hospital with its new emergency room wing. I was disoriented and for a moment did not know where I was.

I remember that I wasn’t able to learn to save art images/files in a program that my colleague used for teaching art history. He showed me how to use it several times, but I couldn’t get it, didn’t understand the simple procedure. I continued to use links from images I’d find on the web and would email these to myself. I created my own way to save content. My own way ended up taking many hours of research, and each time I would teach the class, I would have to recreate this content. In 2014 I noticed I was having trouble remembering certain students names, and did not remember some of the  parents names. I lost my wallet on the bus. I lost a Movado watch. I would constantly forget my keys at school. I had multiple passwords for multiple accounts, and kept them saved on my computer. I couldn’t remember them.

Anosognosia is a deficit of self-awareness, a condition in which a person with some disability seems unaware of its existence. In those with Alzheimer’s disease it is manifested as poor awareness of deficits.

I think I had Anosognosia early on and likely had mild cognitive impairment before the onset of Alzheimer’s. I was unaware of any deficits and pushed myself. Because I was a gifted lecturer and inspiring teacher, it did not appear that anything was wrong cognitively.

******

I reached out to the rabbi and the synagogue, when I saw that foods were rotting in the refrigerator. This spoke volumes about what he felt. He quickly got better at making sure there was food when he saw that others were coming here.

Hear me my dear children, my husband. I mean you no harm. I am telling the truth. It’s a disease and because of it I can’t do and be who I was. You will have your lives, your days, nights and dreams.

*****

People who are kind show up. Monique with her wonderful smile and easy manner. Her mom has been diagnosed with early Alzheimer’s, but is still pretty functional, gets around Manhattan where she lives by herself. Her mom has the slow later age type of dementia I believe, as she’s 78. It’s not what I have. Monique brought a tunafish sandwich and an apple. she is coming again tomorrow. Thank you. I remember the meals. The thoughtfulness.  I drew this portrait of her that does not do her beauty justice.

Suddenly Mad- Flummoxed (Monique Haas drawing)

I’ve been taking photos of people on my iPhone and I draw them. It’s an homage to them. They are being kind, thinking of me and showing up at this most difficult point in my life. It gives me purpose to have people visit me. I get up, get dressed and greet them, and they spend time with me in my garden, in my home, we talk and they tell me their stories, talk about themselves and their lives and listen. Some have had relatives who have or had this illness.

Alzheimer’s is a highly stigmatized disease, and it takes a certain kind of person to be inclusive and generous when it’s so much easier not to bother, and look the other way. I may not remember the name of everyone I have met recently or my students from long ago, but I do remember who visits me. Jeannie is Ruth’s sister and comes every week with meals for the day and some to freeze. Jane, Zehava, and rabbi Rob visit. Elizabeth comes. Her mother had early onset and was a brilliant woman who was diagnosed at age 54. Tara came for a while with her daughter. Emily is pregnant and with a young baby who is one and a half, won’t be able to do this much longer. Bob is Jeanne’s husband and comes to play Scrabble. Harry needs a break, he says. Now there is Ruth who is much more than a visitor. She’s a friend. Accepts me. I am grateful.

Suddenly Mad- Joseph Pratticus detail

Joseph and his wife Diane drove here to see me on Saturday. I met him only once at The Rubin museum, and he has been reading my blog and sending me long emails about his faith and stories about his life. He told me knowing me has sparked a new level of thankfulness in him for the very things that people take for granted; getting dressed every day, ease in taking a shower, preparing foods, eating, sleeping, the simple everyday things that are now so difficult for me. In his youth he attended Stevens Institute and became an engineer. This town is a part of his past. He attended Stevens Academy which was torn down and now is a condominium building across the street from Church Square park. My friend Zehava lives in that building and has a beautiful two-floor apartment that faces the park.

Suddenly Mad- Flummoxed (Marconi with eagle sculpture Church Square Park)Joseph, Diane and I walked through the park and from afar Joe thought he saw the statue of Athena. What he saw was actually a statue of an eagle, and below it, a high relief sculpture of Guglielmo Marconi, the inventor of the wireless radio. Interesting that in my research on this sculpture of Marconi, I learned that Marconi was a Fascist and Benito Mussolini was the best man at his wedding.

I try to connect the dots. I’m glad that I showed Joe and Diane the facade of the beautiful synagogue where my son and daughter were bar and bat mitzvah.  Friends I’ve made there read my blog and they are the ones who visit me and some bring meals. Although it was a bit of a hike for Joe and Diane, as this is near the south end of town, somehow it seems apropos showing this to them, knowing now that Marconi was a Fascist, and that his statue stands in Church Square park. My small personal attack on Fascism of the past, and my interpretation of why history is important to the present.  Ironic that it is Marconi’s vision of universal communication that ultimately lead us to Steve Jobs, and this computer that I am typing on. Yet he was a Fascist who wanted to own the airwaves.

Suddenly Mad- United Synagogue of Hoboken facade

Which brings me to G-d who is a constant presence in my life and the one who is holding my hand and my heart. I’m alone with G-d now. I can try to connect the dots of history and try to untangle the question of “why me?” But I do not know. My brother in law has told me it’s my karma. My sister has refused to see me though I have begged her to come and reconcile, forgive each other. I will likely never see her again.

I only know my number was called and there are some beautiful souls who are showing up at my door and reading this. They are wondering as I wonder…why did this happen to someone who gave so much, was so strong and now needs care at an age where others are enjoying life and adapting to aging? How long before I am not able to even ponder that question?

Suddenly Mad- Flummoxed (kite in the sky 2)

 

alzheimer’s or ALZHEIMER’S

Suddenly Mad- alzheimer's or ALZHEIMER'S and my daily triumphs- TRIUMPH in the sidewalk on 17th St.

I went to The Rubin Museum in Manhattan on Friday by myself!

It’s on the third Friday of every month. I hadn’t traveled by public transportation to the city alone in well over a year (almost two years!). I am always accompanied by a home health aide, paid companion, or by my husband or daughter. I took the photo of the word TRIUMPH on 17th Street on the same block as the museum. It spoke to me.

I did it!

Why did I go alone? I realized that I had given up my independence too early and I still have the ability to navigate routes that I am familiar with.

But the main reason is that yet another paid companion has bit the dust. Keith told me he has to work for his agency for 100 more hours to qualify for continued health insurance, and we were paying him privately. He told me he has to take care of himself. He had accompanied me there for the past four months on the third Friday of every month. He’d come to my home at 11:30am and we would gear up to go. Now he is no longer going to come here at all, which makes me sad, because I had grown attached to him. We would go for walks to the park and along the waterfront, he’d play Scrabble with me, he’s tell me stories about his life. He made sure I ate lunch. He’s read my blog and used to comment. I thought he was my friend. I thought he cared about me. That’s how it is. Paid companions leave.

My husband works remotely from home on Friday’s on his computer. He needs to do this. He’s an employee. He’s not retired, and can’t always be available to be with me if I need to go somewhere. The Rubin museum program is where I have met people who have Alzheimer’s and dementia. Younger onset people, like Scott, the former plastic surgeon, and Maureen who could only tell me she remembered she did something in a school but doesn’t remember what it was, and told me she has two grown sons and is married. There is sweet Sandy who is married to Ira. They worked together professionally as management consultants and they have published many books. Now Sandy has Alzheimer’s and Ira is always with her. He is an amazing caregiver and loving husband. They love each other very much.

There are the wonderful warmhearted administrators and docents in the program, among them Laura Sloan, Robert Allen and Jeremy, who know so much about Buddhist and Tibetan art, and are always so welcoming. There are the older men like Arthur, who often says everything in the museum is beautiful. There are the volunteers like Joyce, who is attentive and who reads my blog, and who’s mother had Alzheimer’s. And yes, there is Michael in his wheelchair unable to participate at all, in late stage, but still present in his way, along with his cheerful aide Georgia. I wanted to see these people again, and wanted to see the art, so off I went…alone.

I walked the 12 blocks to the PATH and the trip from Hoboken to Manhattan on the train was easy. It’s literally 10 minutes once the train leaves. I was concerned about the cacophony of sounds in the city being too much for me to endure (sounds don’t get filtered and everything ends up being loud), the crowds on the street being too much for me to navigate around, but it wasn’t that way. I was focused on getting there and alert. I was prepared. I got off at 14th street and walked up the three flights of stairs, turned right, waited for the green light, crossed the street on Sixth Avenue, and headed to 17th Street and turned left and walked towards the museum. That’s when I saw the word TRIUMPH which looked like it had been soldered onto a metal plate. I took this as a sign that I was doing the right thing, a good sign.

When I got there, everyone was already seated, having tea at the long table that is set up for our group. I announced to Scott and Lin, an older volunteer, that I had come alone. Lin expressed concern, and told me how important it is for me to have a medic alert bracelet that says memory impaired. Scott showed me the black silicon one he wears. I told them that my husband had ordered one, but not in time for this trip. I told Laura I was there by myself. I told Robert. I told Ira, who was sitting with his wife Sandy and some of the regulars at another table. Then I felt embarrassed about making such a big deal about coming there solo. It felt childish. But I wanted to let folks know how important this was for me. Like I was wearing my big girl pants. I wasn’t going to let Alzheimer’s stop me.

I’ve read about the wanderers who get lost. I’ve read it happens in the moderate stages – sometimes (in around 40% of people). It’s not likely to happen to me as I’ve become so timid and stay in the house so much, and sit so much, but who knows? My husband ordered the Medic Alert bracelet, that will say Alzheimer’s / Memory Impaired and it gets registered with a 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (Chitra Ganesh animation at Rubin)We took the elevator to the second floor and Robert and Laura showed us a digital animation, by the artist, Chitra Ganesh, called The Messenger. The photo is one frame from an animated loop that plays over and over. Ganesh adopts elements from the historical objects in the museum that relate to the Future Buddha and Second Buddha. She takes these mythic elements as inspiration in creating a personal contemporary narrative. In this frame a woman looks through a telescope lens. She’s supposed to be  peering into the past and the future.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (Kaumari repousse goddess sculpture at Rubin)This is a repousse (a technique in which three dimensional forms are hammered from a flat sheet of copper) sculpture of the goddess Kaumari, a Hindu goddess that fought a demon and won.

The Kathmandu valley is famous for the custom of worshipping a real young girl chosen by the priests to represent this goddess. Laura showed us images of a beautiful little girl dressed up as the goddess who is carried among the devotees. The girl remains deified as the goddess until she begins to menstruate, then is no longer considered a goddess. We talked about how this transition from a deified being in childhood, to becoming a commoner as a teenager, must be so difficult.

A personal reflection that this sculpture and the discussion prompted in me is that becoming a teenager exposed me to a world I was not ready to tackle. I thought I was prepared but I wasn’t. My parents were older parents when they had me, already in their forties. They were not equipped to deal with the 60’s counterculture I was to become absorbed into after junior high. My mother  could only deal with raising me through age 12, the year I began to menstruate. In fact, I remember my mother not believing me when I told her my period had begun. She would not continue to be a nurturing mother beyond that age. The modern world was too big for her, and I was about to become a part of that world.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (Prayer wheel - Rubin)This is a 17th – 18th century prayer wheel. This huge one is elaborate with paintings of deities on the outside. It contains a revolving cylinder inscribed with prayers, a revolution of which symbolizes the repetition of a prayer, used by Tibetan Buddhists. A person would turn the cylinder from the outside and recite the prayer over and over.

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The program lasts only an hour and a half. It was time to go. When Keith would take me, I used to buy lunch for both of us in the cafe and by the time we got to the PATH, rush hour would have begun. It being Friday, I figured I had better not hang around and risk getting to a crowded station with no seats of the train. Robert was going in the direction of the PATH, so he walked with me the four blocks and off to Jane Street he went, as I descended into the underground for the ride home. I called my husband when I got out of the train and onto the street in Hoboken, and walked the 12 blocks home. We hugged and he congratulated me.

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A PORTRAIT OF RUTHIE AND MESuddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (Drawing of Ruthie and Minna - pink purple background)Jeanne has become a special friend from my synagogue who has been bringing me meals and visiting every week. She’s one of the first people I told about my diagnosis, and has now become a regular presence in my life. She’s such a kind soul and a truly accepting person. A few weeks ago she invited me over to her lovely home which is only 5 blocks away, for lunch to meet her younger sister Ruth.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (close up of Ruthie)

Ruthie moved to Hoboken last summer. Since we met, we have spent a considerable amount of time together in my home and I’ve visited her in her apartment, which is a stone’s throw from the waterfront. She’s become a good friend. She has her own major health issues and uses a walker a lot of the time to get around, but doesn’t always need it. She’s told me a good deal about her life and I have told her about mine. She became a Jehovah’s Witness twelve years ago. We’ve discussed religion. I know that she was born a Jew, but she doesn’t feel an affinity towards being Jewish. It’s not her religion any longer as she has great faith in Jehovah. I was curious about the meetings she attends at the Jehovah’s Witness Kingdom Hall and accompanied her there one Saturday, a few weeks ago. The meeting was much like a big classroom with a television monitor showing New Testament bible passages, and a discussion that followed with participation by members. Jehovah’s Witnesses emphasize the use of G-d’s name, and they refer to the form Jehovah – a vocalization of G-d’s name based on the Tetragrammaton. This much I knew.

I remembered that originally the text of the Hebrew Scriptures consisted of consonants without vowels. The divine name is represented in the consonantal text by four consonants, the Tetragrammaton (Greek for “the Four Lettered [Name]“), Y-H-W- H. In later Hebrew this name is termed the Shem HaMeforash, “the Explicit Name.” Because of its extreme sanctity. In Judaism the Tetragrammaton is never pronounced and, in fact, its exact pronunciation is unknown.

I had always prayed to G-d, and felt that G-d’s presence in my life was constant. I felt protected. I had a good deal of close calls with my health, my well being, but always had the strength and intelligence to guide myself back to a baseline. I embodied some of the outer trappings of Judaism; I was a member of the synagogue, observant of Shabbos, valiant matriarch of my family imbuing my kids with Jewish learning, a devoted Jewish wife….

With the diagnosis and progression of Alzheimer’s, I have wondered was I cast out? Was  G-d’s there as my rock and redeemer? Why have I been floundering like a fish with a rotting head, flapping it’s body on dry land? What happened to my faith?

Then I reached out to the rabbi and in turn he reached out to people in the synagogue to visit me and bring meals when my husband isn’t home. In a sense it’s because of Judaism that I met Ruthie. ____________________________________________________________________________________________

Everyone who comes into (and goes out of) my life now has great significance to me. Keith the companion who quit is a Jewish man who attended yeshiva. I found him myself, searching on Caring Kind’s website, and called him because I thought culturally he would get me (same age, Jewish, educated, speaks Yiddish in addition to being fully fluent in English, a New Yorker). The home health aides who posted their profiles were so different from me culturally, educationally. I thought Keith would be a near perfect companion. Yet I see that Keith is no different from all the hired workers who previously spent time with me. They are all human beings on their own journey, and have little use for a woman with early onset Alzheimer’s. I value the time we spent together, but it’s over. I was their job for a period of time. I do not like being someone’s job. I prefer friends. I’m still here and will carry on.

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I know I’m on the most erratic part of my journey and that my life has gone awry. The Alzheimer’s diagnosis has become ALZHEIMER’S progression. In three years time what began as depression and a lack of motivation, has progressed to profound anxiety, confusion, drastic mood swings, major sleep disturbance, and the loss of so many of my former abilities, many of my instrumental activities of daily living. My short term memory is gone in as little as a few seconds. I have prepared around 6 meals this year, mainly involving eggs. I get dressed by putting my clothes on a hanger the night before. I live according to a list so I can remember what to do in a sequence of steps throughout the day. Routine is my friend. Arise, take thyroid, tea. Coffee and use the Fisher Wallace Stimulator (a wearable neurostimulation device cleared by the FDA to treat depression, anxiety and insomnia) and Lumosity games played on my iPhone. Shower, dress, brush teeth, apply makeup. Eat breakfast, take Rivastigmine (the cognitive medication) and chew a baby aspirin) with a protein shake….Zoom chats with dementia buddies…maybe go out for a walk if the weather permits….read, read, read….draw…eat lunch, take supplements….get on my recumbent bicycle…walk more…read more…draw more….write…

*****

I have prayed to accept this disease, to find ways to adapt as it changes, prayed to have the courage to travel alone again. On Friday I had alzheimer’s not ALZHEIMER’S. I was able to prove at least on that day, that it doesn’t have all of me. I was able to compartmentalize this terrible disease for one day and carry on. That  prayer came true because of my own grit, determination and the need to regain some of my independence.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (my daughter and my granddaughter_s hands)

This is a photo of my daughter’s hands and my granddaughter’s hands. Last week was Mother’s Day and my family gathered here, my son and daughter in law brought Ellie, our granddaughter. My daughter was here with her boyfriend. Everyone brought flowers. Life is generations. I see the wheel turning. One following the other in a succession. My daughter in law announced that she’s pregnant with twins. They will be born sometime in October. My hope is to be able to see them and hold them and photograph them, and be able to write about it. That will mean it’s still alzheimer’s and not ALZHEIMER’S. May it be G-d’s will to give me the strength and time to carry on.