Portrait of Mimi (October 2019)

I’ve been despairing and then having no choice, accepting whatever happens and trying to go with the flow when I can. I can’t plan anymore beyond the next day. Yes, I’m watching myself disappear while still tracking the changes. I don’t fit in anywhere anymore. Being in the middle stages of whatever kind of dementia this is- Alzheimer’s, or Alzheimer’s and Vascular dementia. Maybe it will always be an unsolved mystery. But the despair I feel from not relating to what others are experiencing, has gotten me booted out from a form of support that I counted on and was part of my routine. I won’t say much more about this. I’m smart enough to know that this unraveling of my life is part of this disease. I am not at fault. I know what I know. I know that people with their varying early dementias, or mild cognitive impairment- those who can drive, those who travel independently, prepare meals and go to the market, pay their bills and oversee their finances…and do the things that normal people do…are not where I am in this disease. There is stigma and lack of empathy within the dementia community as well as outside of it. It doesn’t matter that my clarion call is truthful. Case closed.

So here I am again, after an absence of almost two months. I can still type with two fingers. I recognize when I’ve made a typo. I can still draw as evidenced by the portrait of my daughter. I can still use my iPhone. I can still still text. That’s become my mainstay and ultimately one the most important things I still retain. I’ve been texting with a lovely woman, Julie, in Alabama, who probably has a form of Frontotemporal dementia, who wrote me she can no longer speak, yet her writing is eloquent and clear, and she sends me videos and photographs, and she describes her life to me. This has become a friendship as we tell each other what our daily experiences are. She is honest and some of her days are difficult with pacing and agitation. Her husband is supportive and takes her for slow lazy country drives when he gets home from work. She sends me photos of complex jigsaw puzzles she has been working on, and tells me she was able to insert five pieces that day. She complains of fatigue. I commiserate. I have not had a solid 8 hours of sleep in over three years. I ask her if she sleeps. She said she doesn’t know and asks her husband. She thinks she sleeps but her husband says she doesn’t. I tell her my sleep is fragmented, broken, and she says that may be what is happening to her. She says she is up and down all night. I just lay there when I can’t sleep. I wait until it overtakes me. Glad to know one person who while experiencing “dementia” differently, is caring and reaching out to me. It helps us both to not feel isolated. She spends most of her days alone. She manages to get some things done. She wrote that she cleans her house in spurts, and then rests a lot in between. I am not able to clean. I wash the few dishes that I use, and can sometimes do the rest if there are others in the sink. I can still do my own laundry and can fold the clothes and put them away where I know they are going to be. If any of my things are moved to other drawers, I would not be able to find them. Our friendship is comprised of checking in with each other daily by text and commiserating about how it’s going. She lives in a beautiful house with lots of land and two dogs and manages somehow to be alone most of the time, waiting for her husband to return from work. I on the other hand can’t stand being alone all day. I need the motivation of having another around me to give me the oomph to do anything, whether it is getting dressed or going out. I’ve also been texting daily with another friend, Susan, who I met on Dementia Alliance International zoom chat support group. She doesn’t have a definitive diagnosis but has been struggling with symptoms of PD and fears it may also be Lewy Bodies. These are my two texting friends. Two wonderful women who are in their early sixties who are coping with the onset of dementia. Very different symptoms, very different coping skills. Just to have them in my life as people I can be honest with, away from the herd of judgement and yes, stigma, that exists is heartening.

Caarin and Jeanne have been taking me to Lincoln Center Moments, the program for people with dementia. I push myself to be ready to go. On Friday, Caarin came at noon and because she drove there and parked in a parking garage across the street, we were able to get there before one o’clock. Jeanne doesn’t drive, so we have to take an Uber.

I’ve been able to go to the last three programs because of them. When I went with Jeanne we saw short documentary portraits of historic libraries in New York City and clips from the 1960’s neighborhood around Lincoln Center library. We saw that neighborhood when the great jazz pianist Thelonious Monk lived across the street and clips of him playing live at The Village Gate. Last week when I went with Caarin, we enjoyed a concert by Steve Herring and friends, with their amazing operatic voices and classical musicianship, that showed that the sixth decade of each century in the modern world seems to be a particularly vibrant time that pushes musical innovation toward the next century. They played and sang opera from the 1660’s and 1760’s (JC Bach and Mozart), and from the 1860’s (Franz Liszt and Johannes Brahms). Steve Herring and another musician performed a piece called Clapping Music, by the contemporary composer Steve Reich written in the 1960’s, for two people clapping. They sang One Hand, One Heart from West Side Story. The lyrics by Leonard Bernstein and Stephen Sondheim, is a duet sung by the characters Maria and Tony, while they have a make believe wedding. Steve Herring then closed with a rousing rendition of I Feel Good, by James Brown, the progenitor of funk music, and often referred to as the “Godfather of Soul”. On Friday,  Caarin drove to Lincoln Center again and we heard the consummate vocals and guitar and piano of Celisse Henderson and her band.

Evan Leslie presents a film about The Lincoln Center library in the 1960’s. This is an image of jazz pianist Thelonious Monk who lived in that neighborhood. San Juan Hill was a community in what is now occupied by Lincoln Center. It’s residents were mostly African American, African Caribbean, and Puerto Rican, and comprised one of the largest black communities in New York before World War 1.

Steve Herring singing James Brown’s, I Feel Good.

Celisse Henderson sings Aretha Franklin, Chain, Chain, Chain.

I stay for the after-program in which the people with dementia and their care partners are led in discussions, music making, singing and art making. I am always very observant to see if any of the people who have dementia participate. My comments are usually pretty off the wall and illicit a laugh from the art and music therapists who run the program. For instance when asked to complete the sentence – I am…, I proclaimed that I am atypical, vociferous (although I think vehement would have described me better), ferocious. The people with dementia in the after program did not speak for the most part, save for a woman who is 101 who clearly is in the throws of extreme old age rather than dementia. It is mainly the caregivers and companions who participate.

Then there’s still the trips to The Rubin Museum’s Mindful Connections program which my husband takes me to on the third Friday of the month. I look forward to these because I’m encouraged to participate. I’m one of the few with a neurodegenerative affliction who has something to say about the art. The last time I went though I was almost speechless when presented with this image. It kind of looks like what I feel like.

UFO No. 3 2016        Acrylic, ink and gold pen on cotton                  Tsherin Sherpa

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Walking 

To have a disease that impacts my physical mobility and speech is the biggest setback of this illness. To see that my mobility has declined so much in the last year is startling. Last year at this time, around Halloween, I was out and about taking photographs of children in their costumes, walking outside by myself, fully oriented to my location, able to cross the street alone, without anxiety and physically and emotionally confident. Now when I go out alone it is usually only around the block or to the park two blocks away, and back. When I go for walks on streets further away, it is always with my husband or my companion, Theresa. This is because of the changes in my mobility and also because my coordination and reflexes are slowed. No, I do not want to use a walker or rollator. Using a device to walk would not make it easier to cross the street or do the route that I still walk, which amounts to 1.8 miles. This town is filled with children on their scooters and people that ride their bicycles on the sidewalk. I can just envision a crash between a bike and a walker. I’m faster on foot. I want to avoid this sort of accident.

I push myself to go and get out of my house when I have the opportunity, and I am especially interested to see and experience new things, within reason. This is why I was thrilled when my niece Caarin drove me to her house which is around 13 miles away. She lives in an old Victorian three story shingled house with her husband Eric, which means there are a lot of stairs to climb. I climbed up the stairs to the entrance, then stepped inside and saw the steep staircases that leads to the next two floors. That staircases have become an obstacle is one of the startling facts of this illness. I can still climb stairs, but have to go slow and carefully, holding the banister. I used to bolt up stairs. I remember climbing two at a time only four years ago. She showed me the kitchen and living room and dining room with it’s Shaker style chairs on the first floor. I met her cute 2 year old little bulldog. Then I asked to see the rest of the house and we climbed the stairs to the second floor where she showed me her bedroom flanked by two authentic Noguchi lamps. Eric showed me the sitting room and pointed out a framed boyhood collection of superhero costumes, toy robots and movie posters from the 1940’s. Then Caarin showed me her studio where she knits and runs her knitting business, creating beautiful bold colored sweaters, ponchos, mittens, gloves and hats. She has 150 people creating her patterns all over the world!

Caarin’s work table with samples of her knitting. On the table is a photograph of her late mother  Carol (the woman who adopted her) who died three years ago, and a photograph of her grandmother, Charlotte.

Then we climbed up to the third floor, where their kids have their bedrooms. Their children, Charlotte and Jasper, are now in college, and I felt like a spy deciphering their personalities from the contents in their rooms. Jasper is a wildly prolific artist, and his room is filled with his artwork, Charlotte’s bedroom is tidy with a Navaho rug and a few photographs. Another room between their bedrooms contains a sewing machine on a desk. Some of her photographs and drawings dot the walls.

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October 8 and 9 was Yom Kippur, the holiest day on the Jewish calendar. Jeanne accompanied me to the synagogue. Known as the Day of Atonement, I did not pray for myself to be inscribed, but prayed for my family- for my daughter, my son and his babies, my grandchildren and my husband.

On the way home, as I walked carefully in the dark with Jeanne, we ran into Monique and her husband and mother, who is in her mid 70’s and has been diagnosed with Alzheimer’s. Her mom is thin and tall and there is no evidence of mobility decline. I observed her as she walked. Monique says she has no short term memory, and she could not have a conversation with her as she does with me. I ponder this. How is it that I who am about ten years younger than her mom, now have trouble walking while she appears to be unaffected? What I would give to not have had such a fast decline. It’s 3 years from diagnosis and I think it’s four years since this started. I am now 65 and a 1/2.

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Theresa, my companion’s apartment in Bayonne.

Last week Theresa, my companion/ home health aide, invited me to visit her apartment. She just bought a new car, and I told her I wanted to see where she lived. So she drove us to the New Jersey Turnpike, past the Liberty Science Center and Liberty State Park. She had met Monique on one of our walks, so I told her about the time in 2002 when Monique was a volunteer at an event held at that location that honored the filmmakers selected for the Back East Picture Show where my documentary Back to Gombin screened. My film did not win the award that evening. That went to the playwright Israel Horowitz for his documentary 3 Weeks After Paradise.

We drove on to Bayonne and Theresa parked near the Catholic church she goes to every day. She lives two blocks away and we walked to her building. Up a short flight of stairs to enter, and then up another flight to her apartment. she showed me her bedroom and the bedroom where her daughter Michelle who died only three months ago at the age of 37, used to sleep.

Life is so strange. Why are some fated for glory, some for doom? I was still striving to make movies when I became ill with this insidious disease. It just wasn’t meant to be.

So my hope and prayers are for the next generation and the next after that. My daughter, my son and his children. My daughter is a television and film producer and last week she produced a festival of women’s films at a movie theater in Manhattan. I did not attend because, with my now obvious decline it might have embarrassed her. I can no longer “dress up” and when I speak I stammer and my behavior is often odd. So I suggested that Caarin attend and she did and sent me a photograph of my beautiful daughter presenting and another photo of her greeting guests at what was a sold out event. My time is over, and the strange thing about this is I am watching myself end in slow motion.

Returning from Theresa’s I pointed out this mural to her. It’s a 180 foot tall mural of David Bowie painted on the side of a building in Jersey City by Brazilian artist Eduardo Kobra. I once passed David Bowie briefly on the staircase at the old Whitney Museum, in the stairwell. He smiled and said hello. Now he is gone and I remember that moment. I saw him again at an exhibit of his friend, the musician, Lou Reed’s photographs. He stood with Lou chatting along with his wife, the model Iman, and and Lou Reed’s wife, the performance artist, Laurie Anderson. Now Lou Reed has passed away as well. If there IS a heaven, those are two I would like to hang out with. Maybe we could dance,

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Took this photograph of an old street sign in Hoboken enveloped by a tree while on a walk with my husband.

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More walking

Last Saturday I went for my last great walk. It revealed how limited my mobility is now but it was a beautiful day despite this. My husband drove us to the Hartshorn Arboretum and bird sanctuary. The foliage in the trees are changing color and autumn was blazing as the green gives way to red and gold. I was able to walk on flat and some of the slightly sloped hills. I was able to walk up and down the steps around the main buildings and along the path that encircled a much lower sloping hill with 3 miles of trails leading through the diversity of flora and fauna. I tried to walk through some of the trails with my husband, but when they became narrow and steep, I couldn’t manage it, and we had to turn back.

Before we left a lovely Asian man asked us if we’d like him to take our picture. My husband put his arm around my shoulder and we both smiled.

Portrait of Caarin – September 2019

I am no good alone anymore. I was so much better than this. I could do this alone and I could do this with you. I miss me. I miss you. I miss who we were. (for Wayne)

*****

So glad that Caarin took me to see the Leonard Cohen exhibit at the Jewish Museum. The exhibit which closes Sunday, September 8, is titled, A Crack in Everything. The title comes from a verse in one of his poems.

Ring the bells that still can ring

Forget your perfect offering

There is a crack, a crack in everything

That’s how the light gets in

I take that literally. To give credence to what I can share, and describe the  experience of pushing myself through the eye of the needle, and threading my words in some kind of order.

Leonard Cohen was a very lucky man. An artist, a poet, who loved words and stumbled into greatness when he decided at the age of 33 to play the guitar and put his poetry to music. The more I learn about him, the more I see he was amusingly tough, smart, clever. A self serving high priest. A fallen angel.

I was once lucky and am now unlucky. I wasn’t always this way. I laughed until I cried,  felt rapture in the arms of my lover, that sweet gentle tenderness as I held my babies. Elation when the thing I was making turned into art. My friends and I understood each other without speaking. I looked forward and seized the day. I was just like you.

Now no amount of anything will save me. There is no cure. and I have progressed, and this illness progresses mercilessly every day. I am told to practice acceptance. No one gets out of life alive, so enjoy the time that’s left. I go on the dementia support group zoom chats looking for someone who is like me. I go to programs where people with dementia attend. I look around for someone who is like me, someone who is aware of what has happened to them. Who can articulate what they’re going through. I’ve seen people in all stages of decline, one with her head in her lap, another holding a stuffed animal and staring blankly into space. I am clutching onto the notion that if I remain aware, I will not progress. But that’s ridiculous, as I have and will progress unless something else takes me away rather quickly. It’s not death I am afraid of. No. My fear is living with this, lingering, unable to walk, speak or do anything for myself, and being aware of it, locked inside and broken. People I know who have a diagnosis and are in the earlier stages do not understand. They are not there yet. I hope for their sakes that their trajectory is slow and the pathology is not so aggressive.

*****

Back to Leonard Cohen who wrote that there is a crack in everything and that’s where the light gets in.

He died after a fall, in his sleep. He had cancer, but that’s not what killed him. He lived and loved (a lot) and constructed an imperfect perfect life. He died with all his “marbles”. Lucky man.

I want to live and die without regressing into the kind of infantile paralysis that Alzheimer’s becomes. I am still able to seek refuge in words, art, music and poetry, but over the course of this “thing”, everything I touch, say, and do, gets twisted. It’s groundhog day every day.  I am aging rapidly, a kind of reverse adult Progeria, that rare genetic condition that causes a child’s body to age fast. While I rapidly age, I am losing my abilities, everything I’ve learned in reverse order. Bless my dementia mentor, Laurie, who early on instructed me to put my clothes for the next day on a hanger. Repetition helps, though I still have to talk my way through it (right foot through the pant leg, then the left foot, now pull ’em up. Open the shirt, put the left arm through, now the right arm, and pull it down. A ghastly admission, and certainly not poetry).

*****

So I come here and write about art and music. The life of the mind. Matters of the sublime. I can barely get through my hygiene routine, and have trouble chewing and swallowing a meal, become confused transferring different foods in containers onto a plate and heating it in the microwave, but hey, I can still appreciate beauty, and can still use spell check.

*****

Bob Dylan and Leonard Cohen were two of the heroes of my cultural era. Some have called them the Mozart and Beethoven of the 20th century. Dylan, like Mozart, is a prodigy. He wrote Blowin’ in the Wind in fifteen minutes on a napkin when he was 21. Cohen wrote Hallelujah over the course of five years. Beethoven, as opposed to Mozart, has always been painted as a composer who struggled and suffered for his art. Whereas Mozart composed symphonies in rapid succession, completing three of his greatest in one summer, Beethoven took years to complete his. Like Beethoven, Leonard Cohen would also take years to perfect a great song.

I often have trouble completing a sentence, a paragraph. I was not like this before…I wrote scripts, made films, was a teacher and a source of inspiration to my students. A doer. Active and engaged. Creative AND analytical. But I will not be remembered for that. I will be remembered as the woman who sadly came down with Alz. I will be remembered as putting up the valiant fight but ultimately succumbing, because no one survives this. No one.

*****

The exhibition conjured Cohen, his words, his visage, his music, his perfect imperfection. Resurrected. I lose myself in his poetry, his gravely voice, freed temporarily from thinking about myself.

Imperfection. Brokenness, Judaism, Zen Buddhism, Doubt. He reflected on reverence and despair.

In his song Suzanne, from his debut album in 1967, he wrote…

And Jesus was a sailor

When he walked upon the water

And he spent a long time watching 

From his lonely wooden tower

and when he knew for certain

Only drowning men could see him

He said “All men will be sailors then

Until the sea shall free them”

But he himself was broken

Long before the sky would open

Forsaken, almost human

He sank beneath your wisdom like a stone

He was talking about the inevitable defeat that awaits us all. His instructions were to never lament casually. If one is to express lament, it must be done within the confines of dignity and beauty.

Caarin has been visiting often enough to understand that this disease has impacted my gross motor skills, moving my body through space, my flexibility and strength. I have trouble negotiating turns and coordinating the movement of my limbs. My fine motor skills are not as severely impacted. I can still draw, write and type. She walked with me to the Hoboken waterfront, after I “rehearsed'” going there with my husband, and a few days later with Theresa. It takes a lot effort to get myself out the door, but I pushed myself and this prepared me to go with her to New York. Going to the waterfront with her was a rehearsal for being able to the Jewish Museum. I guess we can think of this as a marathon for a person in the middle stages of this disease. Walking is very slow now, shorter steps, kind of a shuffle with moments I catch myself as I lose my balance and veer off to the left. There is fear of falling (especially since I fell down the marble stairs at The Neue Gallerie and injured my leg and almost broke my back). When I turn and move, I am hyper aware of being in a body that doesn’t move easily.

I wanted to show Caarin the beautiful Hoboken waterfront, but I realized I had not been down there in over a year, when I went with my husband two weeks ago. It’s not that I don’t remember the route. Walk up to Hudson Street, down through Steven’s park, across the street, and head down the hill. Simple. But the act of walking any distance is exhausting. I look for a bench. I sit.

We looked out on the water. A yacht, a Norwegian ocean liner. I snapped a photo. Geometric harmony.

My husband encouraged me to continue walking, and so we walked out onto the path that juts out onto the water. Then we headed home. I didn’t know that Stevens Institute had built a new structure to replace the rickety wooden staircase that connected the waterfront (which is 3 feet above sea level) to the campus that encompasses the acreage that is highest above sea level in Hoboken.

Instead of the very old wooden stairs I used to climb, now there is a concrete and steel structure. I crossed Sinatra Drive, my husband holding my arm, and pulled myself up the stairs grasping the banister. The new structure is separated into three staircases, with a landing that has a bench that overlooks the waterfront. The landing is midway up, and then there is a long flight of stairs to the top. I sat on the bench at the landing reserving some energy for the next flight, and snapped another photo, and then carefully maneuvered myself over to the longest staircase that connects the structure to the campus.

*****

The trip to the museum with Caarin turned out to be thrilling. A conquest for me. A victory over my physical limitations. Caarin seems to understand intuitively what I am physically capable of and how important it is to push myself, but also be careful. She doesn’t hover. She just has a sense of what I can handle, and offers her arm or hand when I need support. This made traveling with her easy.

I believe that there is a spiritual reason for Caarin and I meeting at this point. How bizarre and beautiful that my 53 year old niece, who I would have never met if not for this blog, would find me, and suddenly appear at my door. As much as G-d is unknowable, and we are like ants to the enormity of G-d,  meeting her now restored a bit of my beleaguered and dwindling faith that there are forces at work we can’t understand.

I told her about being eleven and standing (hiding) behind the wall that separated the kitchen in our Bronx apartment, where my eighteen year old sister was telling my parents that she was pregnant. At that point “Caarin” was unborn and growing inside my sisters womb. It’s almost fifty four years later and my sister refuses to see me and hasn’t seen me in over five years. And then Caarin appears out of nowhere. The mystery of time. Caarin’s imperative to learn about her family of origin, her birth mother, led her to me. The crack in everything that Cohen wrote about…let the light in.

I felt like I often do when in Manhattan, walking along familiar streets, that I am walking through my past as an impaired person experiencing a heightened reality, a reality that is too real, too sharp, too intense, so much so that I am broken by it’s intensity.

We crossed the street at 91st and Fifth and entered the Jewish museum. I handed the guard my purse, who checked it and I walked in easily. I paid the entry fee with my credit card and signed the receipt. Caarin waited as I stuffed the receipt into my wallet and put it back into my purse. We walked through the doors and into the exhibit.

A Crack in Everything chronicles Cohen’s life and art through visuals and audio based on interpretations by other artists. The immersive show spans the museum’s three floors and contains commissioned contemporary works by artists as well as interpretations of Cohen’s songs by other musicians.

“Passing Through,” a large scale work by George Fok featured audio-visual montages of Cohen throughout the years. It celebrates  his singularity, his music, his charismatic persona, and his stage presence. I maneuvered around the crowd at the entrance to this large room, and stood against a wall until Caarin saw a seat available and beckoned for me to sit down. Everyone in the room was in awe of this conjured Leonard Cohen. This felt to me like a multimedia seance. It was palpable.

When the screens went dark I knew people would be getting up and heading out of the entrance to the room. I maneuvered around the people entering and the people leaving, hoping I would not bump into anyone and tip over. I relied on Caarin to direct me.  We turned right, headed down the corridor and went into another room, where the walls were covered with a timeline of Cohen’s life and work. He was born into a middle class Jewish family in Westmount, Quebec on September 21, 1934. His Lithuanian mother Masha Klonitsky was the the daughter of a Talmudic scholar and emigrated to Canada in 1927. His paternal grandfather, Lyon Cohen, was the president of the Canadian Jewish Congress. His father Nathan Bernard Cohen owned a substantial clothing store but died when Leonard was only nine years old. The family observed Orthodox Judaism and belonged to Congregation Shaar Hashomavin, to which Cohen retained connections for the rest of his life. On the topic of being a Kohen (Hebrew word for priest), Cohen said he was told he was a descendent of Aaron, the high priest and brother of Moses.

“I Heard There Was a Secret Chord” by Daily Tous Les Jours is an audio installation in which visitors can hum “Hallelujah,” into microphones along with other humming voices heard through speakers based on real-time data, creating an invisible vibration.

https://www.youtube.com/watch?v=YrLk4vdY28Q                                                         (Leonard Cohen sings Hallelujah- Live in London)

*****

Yes, Paulan, we will all die soon enough. Let’s dance

https://www.youtube.com/watch?v=NGorjBVag0I&list=RDYuCpTi0EtbU&index=3

Leonard Cohen – Dance Me to the End of Love

*****

Dance Me to the End of Love

Dance Me to the End of Love

Dance Me to the End of Love

I haven’t disappeared yet! I can still draw and write, although my motivation and ability to share has been tempered by a tumultuous month. I’ve been full of worry and woe, and haven’t wanted to share my personal life. Walking is far more difficult now, and I rarely go out alone now. I can still walk about a mile and half, but my gait is unbalanced. I ask my husband to hold my arm during our daily walks.

I can still access my computer, although just an hour ago, I opened my laptop and the screen was black, although it had been charging and I thought it was going to be fully charged. I called in a panic to my husband who was sleeping upstairs, and the poor guy came downstairs to help me. He held down the start button, and lo and behold, got this old laptop to start again.

My last post was June 23rd, and it’s now August 5. A lot has happened. The babies are growing and developing at different speeds. I worry. I worry a lot, but what good is worrying. Life will unfold as it does.

My inspiration for writing this post is what happened yesterday.  I was in bed, and my husband came into the bedroom and said I have a visitor. He said, “remember you told me about the baby your sister had and put up for adoption when she was a teenager?” WHAT???? “Well, she is downstairs, and wants to meet you”. WHAT?????!!!!!

Maybe this is why I am still alive. To meet this woman, who my own sister has never met. Life is beyond strange, isn’t it?

So here is the story.

My sister was 18 and I was 11 in 1965. We lived with my parents in the Bronx, on Morris Avenue in apartment 4E. I shared a bedroom with her. Suddenly there was a hushed discussion in the kitchen between my sister and my parents. I was not invited. I stood behind a wall near the doorway trying to hear what they were talking about. There was a big problem. I was discovered listening in, standing behind the wall, and my sister started to scream at me. What was going on? It turned out she was over three months pregnant, and beginning to show. The boyfriend, Bob Perlman was the father. The handsome young man who came to our apartment to pick her up, dressed in a military uniform, was the one who got her pregnant. In the subsequent weeks, my father took charge. There were meetings at our house between Bob’s parents, and my parents. They came from Peekskill. There was discussion of marriage. My father wanted Bob to marry my sister. In my family an illegitimate child, born out of wedlock was considered a “shanda” (Yiddish for a scandal, shame). No way was she going to have a baby if she wasn’t married. She was only 18, and the young man, a mere 21. She had a job working as a secretary, after recently graduating from high school. All I knew at the tender of age of 11, was that I liked this fellow who dated my sister. He would teach me jazz on the piano, and I liked to improvise these nuanced riffs instead of always, playing from the Fiddler on the Roof songbook that my mother preferred I practice from. Now there was a major upheaval in our home and lives, and my sister and this “problem” had to be solved. Everything had to be kept hush hush. I was forbidden to tell anyone. Despite my father’s insistence on marriage, the relationship broke up within months. Summer came and my parents rented a small apartment at a bungalow colony in the Catskills. I remember being left alone, for what felt like weeks, while my parents visited my sister in the city. I don’t remember knowing then that she had been placed at the Louise Wise Home for Unwed Mothers, and arrangements made for her to give up the baby for adoption immediately after it was born.  I didn’t know about the details until my sister told me years later. At that time I just knew that my sister was living in somewhere else. My parents left me at the bungalow colony with a stack of quarters, and I would use them to play pinball on the machine downstairs. My reward.

My father had enrolled me at a day camp in the neighboring bungalow colony, where he insisted that because I had been cast as Peter Pan in my elementary school play, that I was a shoo in for the role at this camp. All the kids at this camp knew each other for years, and I was an outsider. My being cast as Peter Pan was not endearing to these kids, some of whom thought they had seniority, and wanted the role. Who the hell was this kid stealing their glory? So I didn’t make friends, and no one liked me. While my parents were in New York, visiting my sister, for what felt like weeks, I saw the “group” of kids from the camp, crossing behind my bungalow colony to visit some other kids in the bungalow colony on the other side of mine. I overheard them talking about me, and saying that by walking this way, they would avoid asking me to join them. So there I was with my quarters, friendless, playing pinball, my parents absent, no one in charge of me, no one to talk to, virtually alone. I didn’t have anyone to tell how heartbroken I was, how rejected I felt, how confused and lonely I was. My sister was the one who needed my parents. I was alone and as I didn’t have the social skills to make the best of this situation at 11. And I wasn’t supposed to tell anyone why my parents weren’t there.

Yesterday I met Caarin. She is 53 soon to be 54 years old, born on October 9, 1965. She looks quite a bit like my sister did at around her age. I studied her face, and saw that her lips are shaped like my sister’s, and her high forehead and hairline reminded me of my sister. The way she moved, her ankles, her legs, the way she placed her hands on her lap, the way she tilted her head. I am this woman’s biological aunt. How did she find me? She told me she had read my blog. Said a doctor had referred her to it. WHAT????!!!!!!

Why now? Was this the gift I was praying for? To be remembered? To meet someone from my biological family who would care about me – finally? At the end of my life? I’d been begging my sister to come and see me for three years. She knows my diagnosis and knows that the disease has progressed. And suddenly the baby she had given up for adoption, 53 years ago, appears wanting to meet me, asking questions about her birth mother, about my parents, about my grandparents, about me.

My sister told me years ago she had met this “girl” when she was a teenager. I found out from Caarin that this was a lie. My sister refused to meet her and it was Caarin who tried to meet her birth mother.

Years ago my sister told me the baby had been adopted by a well off Jewish family and that the parents were psychiatrists. I found out from Caarin that my sister had never met her. Instead Caarin showed me a letter my sister wrote to her in 1987, describing her life, her marriage, her family, my parents. She included a photograph of herself with her third child, her second son (the one who I think of as the demon child, which is a separate story unto itself). Caarin told me that my sister’s husband went to see Caarin’s parents when Caarin was away at college, and explained to them that my sister has panic attacks and was too vulnerable to meet Caarin.

I showed Caarin photographs of my parents, and told her everything I could about growing up in my family, told her about my mother, how my parents met, how my father treated my mother, how he was full of rage, and yet was somehow the better parent, who at least payed attention to me, who was charming and sociable, and spoke 5 languages, while my mother struggled with English. She took photographs of the photos I showed her of my grandparents, my paternal grandparents from Gombin, Dina and Shya, who were murdered in the Holocaust. Her paternal great grandparents. I told her about Chaim, my fathers brother, about Minna, my father’s sister who was murdered at Auschwitz, along with her baby daughter, Pesa. I showed her photos of my mother’s parents, her father Menachem Mendel Gershanovich, and her mother Leah. I told her there are living relatives in Israel, Mati and Sima and Yaffa, and cousins in England, Sandra, Ruth, Susan and Peter. I tried very hard to connect the dots for her and give her as much information as I could. Who died in the Holocaust, how my parents escaped, my sister’s birth in Germany and her first five years of life in a displaced persons camp at Bergen Belsen. Even in moderate Alzheimer’s I am the family historian. The conduit of history to a woman who is related to me through my sister, her biological mother who refuses to meet her. AND THAT IS BEYOND IRONY.

Sonia my late mother in her 20’s in Russia

My parents Michael and Sonia in 1975

My parents Michael and Sonia, my sister (the beauty) at 17 and me at age 10.

Apparently my sister had never told her own children about Caarin. I learned that a letter that Carin had written to her was discovered by the third son, and he was shocked. This is his half sister who he will never know.

My husband told Caarin she dodged a bullet by being given up for adoption.

My daughter arrived and met Caarin. They liked each other instantly. 25 years apart they are biological cousins. They shared their contact information and I have a sense that Caarin and her family will be a part of my daughter’s future.

Later Caarin’s husband and daughter Charlotte arrived. Lovely people. Caarin wants to see me again and arranged to come next week.

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Tragedy strikes: My part time companion,  Theresa was praying for me to have an easy passing, to be able to die in my sleep so that I would not have to progress further in this hideous disease. I want that. I want this to be over because I am a fast progresser and the symptoms of the disease are too much to bear. I have described how it is difficult to walk now, how sleep is fragmented, how weak I am becoming, how hard it is now to eat, to chew and swallow, how the previously simple act of taking a shower and washing my hair is a sequence of torturous steps. How getting dressed is a sequential nightmare. Each step, every physical action is getting harder to do, there is so much more forgetting. It is exhausting and I know that it only gets worse. Life hangs on but I believe in spirit. I believe my spirit is eternal and I am ready to be with G-d. I am ready but apparently G-d is not ready for me. On July 22, Theresa texted me that she would not be able to come that week. She wrote that her daughter, Michelle, who was 37 and would have been 38 on August 9, died in her sleep. Theresa had 4 daughters and 1 son. She now has 2 daughters and 1 son. There are details that came out about Michelle that lead me to believe, she too was an unwanted child. A woman who was self tortured and who hated her life. But for heavens sakes she was only 37 years old. She was the prettiest of her siblings, graceful and intelligent. A college graduate who could have had a future. Now she is gone and I am still here struggling. The autopsy is inconclusive. Theresa told me she was cremated and showed me a photo of the urn. Bizarre. Horrible. Sad. Tragic.

I think that G-d is confused.

Theresa came back last week and she continued to show me how to crochet a square.

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On the third Friday of the month my husband takes me to The Rubin Museum’s Mindful Connections program for people who have dementia. Laura Sloan the director of the program, asked me to write an article for the museum’s Spiral magazine about Impermanence. I called it Letting Go versus Giving up.

I am letting go, but life is not letting me give up, yet. Apparently there is still more to be revealed. Am I being taught to not be afraid? This is a huge mask of Hatha Dya As Bhairava which represents a fierce form of the Hindu god, or the terrifying one. Am I being taught to not be afraid?

My soul is.

Psalm 23

A Song of David.

The Lord is my shepherd. I shall not want. 

He maketh me to lie down in green pastures.

He leadeth me beside the still waters. 

He restoreth my soul. 

He guideth me in straight paths for my name’s sake. 

Even when I walk in the valley of darkness, I will fear no evil for You are with me;

Your rod and your staff – they comfort me. 

Thou preparest a table before me in the presence of mine enemies;

Thou anointest my head with oil, my cup runneth over. 

Surely goodness and mercy shall follow me all the days of my life, and I will dwell in the house of the Lord forever. 

Double self portrait – Before and After

Three weeks ago I fell down the marble stairs at a museum in New York.  A lot has changed. I haven’t written in a month. I thought I couldn’t write the blog anymore. I wrote an email to my friend Michael in Poland and told him I had been injured, and since then everything has fallen apart and I didn’t think I could write again. He wrote me back and sent encouragement. My husband wants me to keep writing. So here I am back again, limping through my words.

Confession. Why do I feel I am being punished? Punished for not respecting the sanctity of my body. I have poisoned myself with medications over the years, believed in doctors who harmed me. Smoked like a fiend starting when I was a teenager, drank to excess, ate so many sweets, so many fatty foods resulting in high cholesterol, and pre-diabetes. Just when I thought I’d turned things around, weight training and biking and vigorously exercising, eating mindfully, taking supplements, sleeping soundly, a relapse of depression and anxiety that was unlike any other of the previous five relapses, came upon me in the summer of 2015. That was when this started and it has been a series of step downs from there. When this began, I told my husband that my experience of reality had changed. Initially everything was too sharp, daylight too bright, the contours of everything I saw, too crisp, razor sharp. Unlike some with this diagnosis who say they experience brain fog,  I was experiencing a heightened sense of reality, more like a bad LSD trip. I couldn’t stand it, so much anxiety, unbearable depression. I sought out medical help. The psychiatrist thought I was bi-polar and prescribed yet another anti-depressant, this time Wellbutrin, along with Klonopin, and Ativan for anxiety. I followed his directions, and two weeks later  (this was November 2015), I woke up dreaming fragments of a dream WHILE I WAS AWAKE. Fragments of a waking dream. I tried to remember these fragments, but couldn’t. The psychiatrist said I was in a mixed state and wanted me to take Saphris, an anti-psychotic (I’ve since read that Saphris is contraindicated in Alzheimer’s or dementia related psychosis and can cause a stroke and death – black box warning). I said no. I knew it would cause Tardive Dyskenisia and I didn’t want my face twitching. Instead I requested to be tapered from the Klonopin. So that’s how it started. A psychotic break precipitated by taking psychiatric medications. Then I got a urinary tract infection and myoclonus (twitching of muscles in my thighs and extremities). I hadn’t had a urinary tract infection since my twenties. I thought it was all because of the medications and I asked the psychiatrist to taper me off. My previously normal sleep cycle would never be the same again. I became an insomniac, unable to sleep at all, unless I took a small dose of Klonopin, and then only for an hour or two. I began stuttering and developed a kind of narcolepsy where I would fall asleep for a few seconds or a minute with my head slumping over, and then wake up with a startle. So for me the start of this was terrifying! Not the bewilderment and slow decline of old age senility (a la Ronald Reagan, the late president). No. it was sudden and the change was abrupt and catastrophic. I could not understand what was happening to me. My husband was panicked too. Four years is a long time in early onset Alzheimer’s. Some die within that period. I’m still here declining. In all the ways that make the experience of this a ongoing saga. I’m aware of how slow I am. Today my husband took me for a walk. I was walking at practically at a snails pace. 

So with nothing but time on my hands I have looked back. There had been symptoms of forgetting, but I knew nothing about Alzheimer’s. In 2014, five years ago, I noticed I was unable to remember some of my students names. I had trouble learning the lines to a play I was in. I tried to learn a simple application on the computer that I needed for teaching. No matter how many times my colleague showed me how to do it, I couldn’t remember the steps. I was forgetting the passwords for various credit accounts and had to write them down repeatedly. I would walk into the bedroom and not remember why I was there or what I was trying to get. There were signs, but because I lived alone then, and knew nothing about neurodegenerative diseases, I ignored them. There were also falls. I fell getting out of a taxi, I fell walking home from school, I slipped and fell down some of the spiral stairs. I was forever bumping my head and when trying to retrieve art materials from a shelf above my head, pulled down a heavy box that fell on my head. I thought I was just becoming clumsy.

I didn’t know that depression and anxiety are symptoms that can lead to Alzheimer’s. I had what was diagnosed as major clinical depression, and was put on antidepressants at high doses, that were always introduced with benzodiazepines (Klonopin), that were withdrawn after a few weeks. I hated the side effects of the SSRI’s. There were many physical side effects, the least of which was I getting fat. I would slowly taper off the antidepressants and be fine for a while, but then the depression would come back. I was on this cycle for a decade. The depressions kept relapsing. I had been exercising at a gym for years, and so thought if I ramped that up I would be okay. I began weight training with a personal trainer twice a week and rode my bike for miles every day. I thought I was accommodating to the changes in my brain, by religiously going to therapy, pushing myself to show up and do a good job teaching. I overcompensated by working longer hours and harder. I prepared great lectures which my students enjoyed, and was additionally offered to teach courses in film producing as an adjunct professor at NYU. I thought the feature film project I had begun in Poland (The Lilliput https://player.vimeo.com/video/91234297)as an American Fulbright, would be my next life after teaching, and that I would make more films after that. I had another completed script, Sonia’s Flame, that I knew would make a great film. Along with teaching, I traveled during school holidays and in summer attended film markets in New York and California, and returned to Poland where my art director introduced me to a producer, who offered to get the film made, if I could secure half of the backing. I thought as long as I keep moving forward, exercising, and working, writing a great script, and finding a producer,  I could make my dreams come true.

What I did not realize is  how inwardly frantic I was. That I was not in control. That something ominous was happening to my brain, and that all my plans and aspirations were silently about to be dismantled.

Alzheimer’s is a ticking time bomb.

Anosognosia means having the disease and not knowing it. I know now, but  I didn’t know then. I was not aware of how difficult it was to keep juggling the many aspects of my life. I just kept going. Accommodating. Now I am hyper aware of my decline, and it has been steep with rapid progression. In less than three years since the diagnosis, there is little I can get done. Getting dressed, groomed and ready for the day is a goal now. Taking a walk is very slow now, and chewing and eating a meal, without choking is a big deal. Taking a shower and washing my hair is a conquest. I am acutely aware of the stark contrast in who I was, and what I have become.

This disease is hideous, demonic and fatal.

I have trouble moving around now. Motor impairment. Every thing I do has to be planned out in steps. Eating a meal is a slow process – chew and swallow, take sips of the vegetable drink my husband prepares for me. Still I choke. It’s hard to swallow. I speak to myself to make sure I am actually doing what I intend. I hate getting wet! I used to love to take a brisk shower. Now I have to force myself to shower and wash my hair. I procrastinate and finally in the shower I pause to jar my memory to remember the steps in cleaning my body and wash and condition and rinse my hair.  I sit for hours and hours playing Lumosity games on my iPhone. Then I get up to move around and end up pacing. Pacing is purposeless behavior that expresses anxiety. When I pace in my house, I’m a  body without a destination. I’m a human being with a horrible disease that has progressed rapidly. Younger onset Alzheimer’s is when It’s diagnosed under age 65. I was 62 when I was diagnosed. It often progresses fast.

When I stand up from a seated position, I lurch forward and then lumber from side to side as I walk. My sleep is broken into fragments – 2 hours and I wake, then go to sleep again, wake again after an hour, back to sleep for another hour. The sleep dysfunction began after I tried (with the supervision of the psychiatrist) to taper off of the Klonopin he had prescribed to which I had a paradoxical reaction (instead of sustained sleep it would not allow me to have sleep). That was November 2015, and while the diagnosis did not come until late 2016 (Spect scan) and again in February 2017 (FDG PET CT), the disease began in earnest in 2015. Before that I used to sleep well and didn’t have insomnia.

As depicted in my drawing, BEFORE is what I was like before 2015 and what I’m like now, AFTER is the consequence of progressing from that point. BEFORE I have read is the prodromal state of the disease. It could have been going on for a decade or more, and I was unaware of how I was accommodating. There were signs, yes, like never learning the room numbers to certain classrooms, and always checking where meetings were being held by peeking through the glass inserts on the door.

When I reached a threshold (assuming that it is tau and amyloid that are the culprits that destroyed synapses and neurons), and my synapses and neurons were fried, Alzheimer’s came and destroyed my health, my life and took away my sanity.

Some die as a result of having this disease within a few years. They say some live as long as twenty (though that is hard to believe, unless they are diagnosed in the earliest stages, or misdiagnosed, which I think is often the case). The average is five years. Pat Summit, the great basketball coach, was diagnosed with Alzheimer’s at age 59. She died at age 64. Some last for 7 or 8 years. Terry Pratchett, the English author of fantasy novels best known for his Discworld series of 41 novels was diagnosed with Posterior Cortical Atrophy, a form of Alzheimer’s, at the age of 58. The disease manifested slowly in his brain and he was able to write several more books, until 2015 when he died at age 66. He managed to maintain his macabre sense of humor.

On his twitter account he wrote these words before his death.

At last, Sir Terry, we must walk together.

Terry took Death’s arm and followed him through the doors and on to the black desert under the endless night.

The End.

Ashes, ashes we all fall down

The fall down the marble stairs at The Neue Gallerie

A year ago Jackie and Lon took me to the Museum of Modern Art in Manhattan to see the Brancusi exhibit. She marveled at how much I knew about his work, how familiar I was with the other artists work in the museum, their styles and why their contributions were important. A year ago my walking was not impaired, and neither was my speech. A year later, my balance is off, and walking is much harder to do. My speaking has changed. Aphasia. I do not recognize this strange alien voice that is MY voice now. Pushing the words out, I try to assemble my thoughts, I stumble on words, forgetting mid sentence where the story was leading. The worst is when I hear myself speak in word salad which I can only describe as verbal tangles of meaningless speech. I certainly write better than I speak. All signs point to more global impairment. The physical aspects of the disease are the most daunting.

On Saturday, June 1st, I fell down the marble stairs at The Neue Gallerie.

Jackie, who is the chair of Dementia Action Alliance, and a dear friend, proposed to take me to The Neue Gallerie, located on 86th Street near Fifth Ave in Manhattan, three blocks from the Metropolitan Museum of Art. This part of Fifth Avenue is known as Museum Mile, and I would go to all the museums on that street, alone, with my students, with my husband, with my friends.  I had taken my students to the Neue Gallerie, and knew a lot about Ronald Lauder, the patron of the museum. He had been the ambassador to Austria under the Reagan administration. Jackie and I talked about the painter Gustave Klimpt, and his painting of Adele Bloch-Bauer, that is the jewel of Ronald Lauder’s collection of Viennese Secessionist art. I told her that I had studied with Serge Sabarsky before I opened my gallery in New York in 1987. He was Lauder’s art advisor , recommending selections of  Austrian Secessionist art from Vienna for him to buy.  We talked about The Lauder Foundation and how Lauder was the patron that enabled Jews in Poland (and Czechoslavakia, and Austria) to reclaim their lost heritage by opening Jewish schools in the former communist block countries. He supported The World Monuments Fund, rebuilding historic synagogues around the world (in Morocco, India, Poland, Czechoslovakia, Amsterdam). When I filmed my documentary, Back to Gombin https://vimeo.com/124443430, I interviewed the director of the Lauder Morasha school, the only Jewish school in Poland. My film work, my personal history, my knowledge and love of art, are intimately linked and I agreed that this trip to the Neue Gallerie would be important for us to take together.

The trip started out well. Lon drove us through the Lincoln Tunnel and up the West Side Highway, exiting on 96th Street and heading East to go through Central Park.  We passed the Guggenheim Museum on 5th Ave, and Lon dropped us off in front of the Neue Gallerie.

We entered the museum and a security guard stationed at the entrance checked our bags. That was the first hurdle. Remembering that the Klimpt painting was in the second floor gallery, I headed up the marble stairs with its ornate iron banister that didn’t reach the bottom steps. Jackie and Lon were following me. She had my jacket on her arm. I heard the voice of the security guard tell Jackie that she would have to check the jacket (in the coat check). Standing on a step about a third up the staircase, I turned around to tell her I would put it on instead. Suddenly I was falling, my body crashing down the marble stairs. Obviously I had lost my balance, and I fell on my back, twisting my foot under the ankle, and scraping my arm which began to bleed profusely.

I was just trying to be who I was, the art lover, the historian, the teacher. I was trying to be who I was, physically adept and self determined. But then I lapsed, my brain and body disconnected, and I injured myself badly. Yes, people fall and injure themselves, but this was caused by my physical disorientation, my slowness, and an out of sync reaction between my body and my brain. I put the jacket on, bleeding inside the sleeve. No, I did not want a bandaid. I wanted my old self back but that is not possible. I didn’t want to pay attention to the pain in my foot, so I pressed on. I hobbled over to the elevator and we took it to the second floor, to see the painting of Adele Bloch-Bauer. My confidence at this point was quite shaken.

We stood near the painting. The room was crowded. I tried to take a photo and a guard told me photos were not allowed. I had already taken this one of Adele Bloch-Bauer by Gustave Klimpt. The jewel of the collection.

In postwar Vienna her image became a symbol of Austrian culture – Adele Bloch-Bauer I was long called ‘the Austrian Mona Lisa’. The painting later became an icon of justice. It was confiscated by the Nazis from the Jewish Bloch-Bauer family during World War Two. A long but ultimately successful struggle for restitution by Bloch-Bauer’s niece Maria Altmann led to the painting being sold to Ronald Lauder for $135 million in 2006. https://www.nytimes.com/2006/06/19/arts/design/19klim.html 

There’s more to her story. She appears in other paintings by Klimpt, sensuous works that suggest they may have had an affair. She had a deformity in one of her fingers, and the odd juxtaposition of her hands in the painting shows her hiding this. Her death at age 43 from encephalitus prevented her from going through the annexation of Austria by the Nazis, and potentially dying in a concentration camp. Who knows? She may have escaped Austria as her husband did. Sadly dying at 43 was her fate. It was the fate of Ronald Lauder to be born into fortune lead the life of a laudable man much admired, who is the owner of the painting of Adele Bloch-Bauer. Fate.

I admired the Egon Schiele drawings I had seen there years earlier. There were eleven exhibited in this show. He was a protégé of Gustave Klimpt, and a major figurative painter of the early 20th century. His work is noted for its intensity and its raw sexuality. The twisted body shapes and the expressive line that characterize Schiele paintings and drawings mark the artist as an early exponent of Expressionism. Schiele produced a large body of work before his untimely death in the autumn of 1918, in the Spanish flu pandemic that claimed more than 20,000,000 lives in Europe reaching Vienna. His wife Edith, who was six months pregnant, succumbed to the disease three days before he did. He was only 28 years old. He managed to make no less than 240 self portraits during his brief lifetime.

The exhibit is called from Schiele to Beckmann, and is devoted to the self portrait, focusing on German and Austrian art between 1900 and 1940, the first four decades of the Twentieth century, when the self portrait reached new heights. While I was moved  by the intensity of German and Austrian Expressionism, before I became ill, I wasn’t prepared for how vulnerable I was seeing these works that day. What I encountered was the visual scream of each artist living through a tumultuous and terrifying time. Although direct references to the First World War in the self portraits are few, the facial expressions and eye contact depicted in these works all testify to the face of battle and the emotional struggle these artists endured. What I saw was the expression of unbridled fear and panic. For me the inclusion of five masterful Rembrandt etchings and a copy of a Durer painting provided a small buffer to what I felt was the intensity of works by the Expressionists.

An especially poignant self-portrait by Felix Nussbaum, Self-Portrait with Jewish Identity Card (ca. 1943), depicts the artist’s experience in a harried, hopeless situation. His coat collar turned up and his Star of David visible, Nussbaum is showing his identity card, upon which his name and signature are visible, as is the ID photograph. The indication of his birthplace, Osnabrück, is blurry; his nationality is given as “sans” (none). “Juif-Jood” in capital letters is stamped diagonally across his passport. Nussbaum continued to paint self-portraits that depict his experience as a persecuted Jew until shortly before he was arrested and deported to Auschwitz concentration camp, where he was murdered in August 1944.

In the following weeks after my fall, I mostly remained indoors. Walking was reduced to a very few blocks, but when I did finally venture to go further, and took my usual route one day with Theresa, my part time companion, I ran into a group of my former colleagues, who were returning from a school graduation party. When I saw them in the distance I wanted to run away and not confront having to speak with them, but it was too late. So shattered is my confidence. There was Jeff Gould, the history teacher, greeting me and calling out my name. He knows I have this disease and has written to me. The others apparently did not know. There was Elena Soulier, the Latin teacher who used to regale us in the teachers room with stories of having been a spy in her youth in Russia. At over seventy she looked so strong and healthy. Standing in front of her I felt so withered. Ritsuko Yakota, the Japanese teacher, who I had been friends with, stood by her side. I hugged her, and told her about my sad plight. She knew about this disease and told me a neighbor of her mother’s in Japan, a doctor has it, and his wife is his caregiver. Then along came Randi Roberts, who had been my student, and was now a teacher at the school. Randi used to have so much respect for me. I influenced her study of art history, and she pursued graduate study in this subject at Sotheby’s in London. Years ago she wrote a wonderful  article about me and my film work for a local magazine. Now all I could see in her face as I told her about my diagnosis was reticence, embarrassment and pity. I asked her if she wanted to read my blog and she entered her email address on my iPhone, and I sent it to her. I have no idea if she has bothered to read it, or if she will see this, but if she does, I want her to know that the disease has caused my decline and I am still here inside this broken brain and body fighting it, even while it affects everything and makes me seem odd.  It has caused me to lose my confidence and stripped me of my strength. It is tragic and no one deserves to have this happen to them. I want to be remembered for the good I did, the positive influence I had. As they walked away I realized the thing I feared most was them seeing me in this condition. I feared stumbling over my words or stuttering. I was afraid of them seeing how changed my appearance is. Theresa quickly commended me for how well I handled myself, and we continued walking.

There are two rabbis that I hold dear to me. One is in Poland and one lives in my city and visits me in my home, and welcomes me when I am able to make it to a service. The last time he came here, I asked him to take me for a walk. The usual route through the park and up to the viaduct and back. We spoke and he told me that during the time a person says Kaddish for a departed loved one (eleven months and twelve months if the person had committed many misdeeds), the soul of the departed is undergoing a cleansing. This period of cleansing prepares the soul to dwell with G-d. My children don’t know this, and I am writing it here to ask them and to ask my husband to please recite the Kaddish for me when I die. I ask that my two dear friends, the rabbi in Poland and the one who lives in my city and visits me, recite Kaddish for me after I die. I ask Jackie my dear friend to recite Kaddish for me after I die.  I wish to dwell with G-d and for my soul to be cleansed. https://www.ou.org/torah/halacha/dalet-amot-of-halacha/the-kaddish/

I thought about writing a letter to my grandchildren, Ellie, Michael, and Sara, and sending it to their dad (my son) and mom asking to give it to them to read when they turn eighteen. I want them to know how much I love them, and I am so sorry that I became sick with a disease that has stolen me from being the grandma I wished to be. If I were healthy I would have been that grandma who would have taken them places, who would have introduced them to art museums and theater, and bought them beautiful clothes, and sang with them and showered them with love. I want Ellie to know how proud of her I am, how delightful she is. I know she will be a great woman. I want them to know that they have a wonderful aunt. She will be there to cherish them with love. I’ve seen it already, and thank her for cherishing ways. I want their dad to tell them about our family and to remember me to his children. In the end love is all there is.

DREAMING

I’ve been having weird dreams that wake me up. They are sometimes scary as I feel and know that these are signs that I am dying. My deceased parents keep appearing. I am not well, and there are many signs that co-mordid diseases are seriously affecting my body now along with Alzheimer’s. I’ve been getting pretty weak. I can’t travel alone as I did a year ago. Walking is getting harder. Speaking is getting harder. Eating and swallowing is getting harder. I don’t even think my body wants food anymore, When natural thirst and hunger go that is a sign that the body is failing. I do not want to be around to the end of the stages of Alzheimer’s, and being in the middle stages now, I would be grateful to not progress until the end, because I’ve seen it, and it’s horrible, and I don’t want to go through that and don’t want my husband or children to be burdened with that. I don’t want to be bed bound, or in a wheelchair unable to walk, unable to speak, incontinent, unable to feed myself. That’s where Alzheimer’s goes, and I don’t want to be cared for by strangers in a nursing home. I want G-d to take me before that happens.

In one dream my late father was in my home and his personality was intact but his face looked the way it did before he died. He had cardiac arrest and was on a respirator for two days when he died. His eyes showed that his brain was dead and the machines were keeping his body alive.  it was horrible seeing him like that, but he had previously told me to ask for all heroic methods to keep him alive, so when he went into cardiac arrest and the doctor asked if I wanted them to do CPR on him, I said yes. I regret that now, because his heart had stopped and it would have been more peaceful to just let him go. But that’s what he wanted and I wanted to comply with his wishes. In the dream his soul spoke to me as the dad he was. He seemed to be coming for me, to accompany me home. My late mother was trying to get in my front door. She was frantic as she often was in the later stages of her dementia, fearful and crazed. I didn’t want to let her in. In another dream a strange man got into my house. I was scared. I had no way of preventing his access. I don’t know who he was. I forced myself awake just as he came near me.

I wrote down this dream dated June 10, 2019.

Dreamt I was riding in the back of a car. My father, Michael, was riding in another car to my right, also sitting in the back (going in the same direction). My mother, Sonia, was riding also in the back seat of another car, to my left. Yet despite being in three different vehicles we were able to talk and communicate. I told them their old friend Zoshe (Sophie) Apolet, their friend who survived Auschwitz, that I always liked, was being released from Auschwitz because it was found that the other prisoners were beating her horrendously. I told them she was living with one or both of her daughters. My father said he was not sure if that was better than being in Auschwitz. I turned to him and and asked him if he was serious. My mother was silent.

Freud would have had a field day with that dream.

Metaphors may be as necessary to illness as they are to literature, as comforting to the patient as his own bathrobe and slippers. At the very least, they are a relief from medical terminology. If laughter has healing power, so too, may metaphor. Perhaps only metaphor can express the bafflement, the panic combined with beatitude, of the threatened person. 

                                                                                                                             –  Anatole Broyard                       Intoxicated by My Illness

Portrait of Mimi

I look for metaphors for this disease. As if words can save me. Shards of the broken mirror, Fractured memory. I try to put the pieces back together, daily.

My husband said that my getting this disease is like I was hit by Mack truck. That’s a good metaphor for this.

The duality. The will to live. Then wanting this to end, and then getting up again. A boxer down for the count. Stumbling to get up again. Down again. How long can my body and brain endure this siege before I have had enough?

The abyss. The anxiety as soon as I wake. Another day. Here we go again. Stumble to the bathroom. Back to bed. I have to get up. My body is not obeying the command. I can’t find the sleeve to my robe. My body exists in a different temporal space than all the objects around me. I’m blurred. I want to run away from myself,  but it’s not possible to do that. Wherever I go, there I am. This disease yawns like a dark chasm. Sleep is the only escape but it’s morning and I have to get up. I’m both hyper alert and slow. I lean on the banister and descend the spiral stairs. Marcel Duchamp’s Nude Descending a Staircase has new meaning for me. I feel like this shattered splintered mechanical figure.

https://www.behance.net/gallery/7315729/Master-Study-Painting

Every action has to be planned, confounded by overcoming unforeseen obstacles. I can be annoyed by a speck of dirt I see, but don’t see the big picture and fumble, about to fall over as I lean forward to pick it up. I’m shocked because something I thought was there is not. It can be a cup or a towel, that i moved myself, but I have forgotten where or the act of doing it. The ghost of me has moved it. Disembodied memory. I’m in the wrong movie.

I lumber when I walk. I watch my feet take the characteristic short steps and hesitate. On the street I look into the distance to avoid the obstacles. A two mile walk with my husband. Slow and I trail behind him. The bench at the halfway point beckons, and now I need to sit down. He does not like to sit. I tried to get up from the couch, and fell backwards sitting  again.

I am in the later middle stages of Alzheimer’s. No longer early. The worst are the motor impairments, followed by my anxiety, aphasia and failing memory. Things which normal people take for granted, having a conversation, sending an email, getting dressed, eating a meal, playing a board game, walking on the street, opening the door with my keys, getting in and out of a car, etc. etc. are all tasks that take me an inordinate amount of time and concentration, planning and physical effort. Everything single thing is a magnified task. Inertia! It’s exhausting. I can only do one thing at a time and slowly.

I’ve also become an astute observer, characteristically watching those who are much further progressed and those who have not really progressed or have progressed very slowly.

I was appalled on Monday. Appalled at how odd I have become. I am aware that my behavior and reactions are the products of a disease that is ravaging my brain, yet I’m unable to act differently. As soon as I entered to auditorium I walked over to Beth and Bill who always sit in the back. The rows of bodies seated waiting for the program to begin, looked harsh, overwhelming. I guarded myself this way, but then ventured in, and sat next to Jeanne and behind a large woman with what to me looked like a huge head of blond bobbing frizz. Her joyful appreciation of the program was so distracting. It was like my field of vision lens is broken. Initially I wasn’t able to concentrate on the program because the my lens is broken and I can only see what is close up, or what is very far away. Finally things came into focus, and I was able to hear, see, process and enjoy what was an excellent presentation of songs and visual stories about Broadway’s musical past.

Afterwards I glanced at the woman who sat in the wheelchair, with the blank expression, a stuffed animal hanging limply on her lap. Only 73, she looks like 85 or 90. I’ve seen her before and tried to imagine her experience living with Alzheimer’s. She is docile and blank. No emotion registers on her face. Will I live to become like that? I pray I won’t. Life hangs on ridiculously long in some with this disease. Then I saw another woman fully hunched over in a wheelchair, her head on her lap. Late stage and yet alive. These are the ones that are fed by the aides. Washed by them. Dressed by them. The living dead. Or so it seems. But who am I to judge. Maybe it just looks that way.

Monday’s program hosted by Lincoln Center Moments (a program for people with dementia and their care partners) was called “Broadway Juke Box”. It was curated by a man named Evan Leslie, an artistic producer for the Lincoln Center of the Performing Arts library and archive. He was scholarly and passionate about the subject and presented a compendium of Broadway show tunes from old musicals presented with photographs of the composers, lyricists, choreographers. Jerome Robbins, Rogers and Hammerstein,  Leonard Bernstein. He played old recordings from Oklahoma, West Side Story, Fiddler on the Roof, The Sound of Music… I was transported to my own past with the recording of Chita Rivera from West Side Story singing America. I sang this with my sister in our Bronx apartment.

He played the Alfred Drake recording of the original Oh What a Beautiful Morning, from Oklahoma. I found this recording and rare film clip of Drake singing it from 1943.

Save for a few, most of the audience was older than me. Ten years, Twenty years. This makes me realize that early onset is rare. There was the wheelchair brigade, Bussed in from Atria, the memory care facility. Most of these folks haven’t a clue where they are. They could be in Kansas. It wouldn’t matter. Trusting their companion aides to get them from point A to point B. The rest of the audience were an assortment of older folks, some with dementia and some just happily old, experiencing memory glitches, glad to still be alive. The happy ones, I call them, they’re always smiling. Then there are the silent ones who shuffle. There are those whose words and utterances are completely nonsensical spoken through smiling lips. There those who say hello, how are you. Yet they don’t have a clue who you are. No one comes alone. There is  always a spouse or a paid companion. The workers. This is the club I belong to now. The club no one would want to  be a member of. Welcome. Let’s have a good time.

I have a disease that most people get when they are at least 75, and generally when they’re over 85. I’m twenty years younger than that. Younger onset progresses faster, In three years since my diagnosis I have progressed very fast. In earnest, you can’t fathom this from reading these words. You’d need to spend time with me in the physical realm and read my brain scan. 

Evan Leslie played a recording of Oh What a Beautiful Morning, and I remembered hearing this song when my great aunt, who I referred to as my tante Bessie, sang this to me. My parents had gone to a wedding and taken my sister along. Bessie and Max babysat me. Max and Bessie slept in separate bedrooms, and that night I slept in tante Bessie’s bedroom with her. In the morning she brushed my hair, and sang me this song. It’s one of the sweetest memories I have from my childhood.

I timidly shared this little story about my tante Bessie in a discussion that followed the program. Why timid? Because it is hard for me to think, remember and get the words out. I used to give talks about my films to international audiences, and was a teacher and professor. I studied acting and was a talented performer, so I’m no stranger to public speaking. But I have Alzheimer’s and my speech and thinking are impaired. So this little display of extroversion was a big deal for me, despite the fact that at least half of the people in the room are in la la land, and could care less.

The program helped me understand how music is used to help people with Alzheimer’s remember. I’m more inclined to listen to Lou Reed and David Bowie, my dead heroes. George Harrison’s weeping guitar. My generation. But Broadway musicals trigger positive memories and produce warm feelings. It’s nostalgia. Corny and sentimental nostalgia helps us to hold on to our positive neural connections.

The music helped me remember that weekend with my aunt and uncle vividly. Uncle Max took me to the movies to see Fred MacMurray in The Absent Minded Professor. It’s about a scatter brained professor who invents flubber, a black and rubbery substance that bounces very high and seems to defy gravity. He bought me paper dolls with outfits to cut out, each outfit had paper tabs to fold over the shoulders and arms and legs of the paper dolls. I sat on the living room floor diligently cutting out the outfits and dressing the dolls. I had fun. I was six.

My parents didn’t buy me paper dolls. I don’t think I had that much with them ever. There were some bright spots but it was not a cheery home life, and I felt like a stranger in a strange land from an early age. There was a big plastic doll that my mother sewed clothes for. There is a photograph of me with that doll. I don’t remember playing with it.

I never knew my paternal grandparents. They were murdered in Poland because they were Jews. Everything would have been different if not for that fact.

Uncle Max and tante Bessie were like surrogate grandparents, but I didn’t get to see them that much. Uncle Max was my father’s uncle, and the only one in his family who was able to come to the USA in the 1930’s, avoiding the horrific fate of my grandmother Dina, his sister, who was murdered by the Nazis when they rounded up the remaining Jews in Gombin, and transported them in the Einsatzgruppen vans to the crematorium at Chelmno, the first extermination camp in the occupied Poland. Uncle Max died at around the age I am now of a heart attack. I remember his very round and fleshy face and the black rimmed glasses he wore. Max and Bessie had three children, but one of them, the eldest, a son, died in the Korean war. His photograph stood in a frame on Bessie’s dresser. Their other two children were Clara and Murray. Murray was a bachelor who lived in the apartment with them. He owned a business that manufactured eyeglass frames. A sore point of contention for my father was when he came to this country and asked Murray for a job, Murray would not hire him. Clara was a teacher and her husband owned a bakery. They lived in Dobbs Ferry in Westchester. They had one son, Danny, who is a year older than me, who I would sometimes see at uncle Max and tante Bessie’s apartment. I remember trying to make prank telephone calls with Danny on his uncle Murray’s phone. Clara and Murray are now gone, and Danny lives in the house in Dobbs Ferry. I send him my blog, but I doubt he reads it. I also send it to our cousin Sandra who lives in England, whose grandfather, Sender, was also uncle Max  and my grandmother Dina’s brother. Sender also left Poland before the war, and settled in London with his Polish Jewish bride. They intended to travel to the US and paid a waterman to take them. He tricked them by taking them around the Thames river multiple times, telling them when they arrived at their destination that they were in New York harbor, when they were still in London. That is how that branch of my family ended up in the UK. Sender and his wife had two children, Eva and Harry. Harry married Hilda and they had three children, Ruth, Susan and Peter.  Eva married Barney and they had a daughter who is my cousin Sandra. She reads my blog and writes to me and sends lovely gifts to my grandchildren.

Thanks uncle Max for taking me to see The Absent Minded Professor.

I sort things into categories. My immediate family.  A few friends I see in person. The people I socialize with on zoom chats. The things I can still do alone; write, draw, play cognitive games, do crossword puzzles.

Socialization is important to provide memory impaired individuals with a sense of connectedness. My week is filled with Zoom chats so I’m sitting at my computer to engage with these folks – Dementia Mentors Cafe and Dementia Action Alliance, Dementia International Alliance, and my dementia mentor Laurie, who I speak with every Wednesday. Wednesday evenings I talk to Jackie who is the chair of DAA, and who I adore and have learned a lot from. Once a month I attend DAA’s art workgroup and participate in the presentations and plans. Tuesday and Thursday afternoon, my part time companion Theresa comes over and she helps with household tasks, we take walks, and crochet. Theresa’s best quality is her patience with me. I am far from easy to be with. I complain, am stubborn, and sometimes downright insulting. She’s not someone I would have been “friends” with if not for this dreadful illness, but I’ve come to appreciate having her help. Krishna my yoga teacher comes for an hour on Tuesday. It’s not long enough. His presence brings me some peace. Jeanne brings dinner and muffins she bakes, and we play Scrabble on Wednesdays. She has accompanied me to some of the programs for people with dementia in New York -Lincoln Center, The Metropolitan Museum. I appreciate the time she’s spent with me and her generosity. Dina Rose also visits, and accompanied me to the previous program at Lincoln Center. Dina is a sociologist and we learn from each other. She has seen the good, bad and ugly in my unfiltered ways. I really like her and wish I’d been friends with her before I became ill, when the playing field was more equal. Rabbi Scheinberg stops by for an hour every two or three weeks. He’s a stoic and solid spiritual teddy bear. My husband takes me the program at The Rubin Museum, Mindfulness Connections, once a month. The relationship with my husband is complicated. I hate for him that he has become my caregiver, and I know how much he resents it. We got unlucky. I don’t think he remembers how sweet it was when I was well. This disease has been hard on him, and as a loner he doesn’t open up to anyone about what he’s going through.

Old friends have fallen away. They can’t relate to what I’m going through, and do not want to be reminded of their own mortality, which seeing me or speaking with me does. I guess some of them figure, I am so damaged I may not even remember them. But of course I do.

Monday and Friday group zoom chats through Dementia Mentors are a kind of check in to say hello and listen to others talk about their day, their week, their lives. The presence of others on my computer is uplifting in an odd sort of way. It’s the recognition that there are people out there going through their own daunting challenges. I suspect my challenges are worse than most of them and that they are in much earlier stages because they have not lost the level of executive function I have and are not experiencing as much physical pain and mobility issues, but I dare not say that to any of them. We commiserate. There are some laughs. Most are in early stages of whatever dementia they have. Lewey bodies folks talk about their hallucinations and sleep disorders. I loved it when Craig shared that one night he had dozens of “Chucky’s” (as in the horror movie Chucky) dancing on his bed. One night they were friendly. The next they were horrifying. He said he covered his head with a pillow and finally fell asleep. It takes guts to share something like this. I can only remember having one hallucination at the beginning of this a few years ago. A pink shaft of light suddenly appeared to the side of my bed. I said out loud, “what the hell is that (!)”, and put my hand through it and it disappeared.

Thursday there is Dementia Discussions zoom chat. Wednesdays are my much loved private sessions with my dementia mentor, Laurie. We confide in each other. She is Ms. accommodations, always coming up with ideas for how to make things work, how to compensate for the losses, make things easier. She is very brave. She traveled to Africa with another person in the early stages. Since her diagnosis, she has even jumped out of a plan with a parachute. Yet she has her own confusion, loss of function and memory and pain. It’s not  easy for her to get through them, but she does it and she unlike me she is not a complainer. She gives me courage to carry on. Like me, she’s seen it all, the poor  treatment of the handicapped who reside in the nursing homes, the ways that each of us are so different in our progression. She has strong faith, and I believe this lightens her load and makes her more fearless.

There are things I can do alone, and there are things I do with others. Going to programs like Lincoln Center Moments, which is the best – live theater, performances and presentations. Unfortunately it won’t resume until October. Who knows what I’ll be like then and whether I am even able to get there, or if anyone will accompany me. Maybe I’ll be a hatstand by then.

At the Lincoln Center farewell until October  I sat with Scott, the former plastic surgeon who has Alz, and his companion, Jonathan; Bill the former Mount Sinai doctor who has behavior variant fronto temperol dementia and basically doesn’t speak (I’ve never heard him speak, but Beth, his companion, says he does and can). Bill is always on his iPhone playing cognitive games. I sat next to Mark who is quite healthy and a slow progresser (I think he has mild cognitive impairment, not Alzheimer’s – my opinion), and Pam, his neighbor and traveling companion. I thought of our circle as “the dementia kids”.

There is The Rubin Museum, Mindfulness Connections on the third Friday of every month. This is one program that my husband takes me to. It’s where I am very observant not only of the artworks, but of the people who attend. I’m always happy to see the regulars, Scott, the former plastic surgeon, who is my age and was diagnosed five years ago. Maureen who is usually with her husband, but does not say much. Arthur is definitely the most jovial and charming fellow with dementia I’ve met. He’s in his 90’s and still going strong. I send my blog to his son Zach, who has kindly read my words and sent me comments.

Last Friday my husband drove us to Rubin, and as I entered the cafe where we meet, I saw two new faces. I went over and introduced myself to Stuart and Marianne. Stuart explained that Marianne is 66 and was diagnosed with Frontotemperal Dementia five years ago. She is mute. No words at all. She is physically active, and gets up and paces sporadically. Stuart explained that she is unaware. Does this mean she does not know what has happened to her? Does she not know she can’t speak? That condition is the polar opposite of me. I am hyper aware. Aware of how difficult it is for me to exist in this physical realm. Aware of imbalance when I walk. Aware that every physical transition needs to be planned. Aware that I talk to myself and give myself directions to get through my routines. Aware that my rants contain babbling that makes no sense. Aware that my body is breaking down along with my shrinking brain. Aware that my behaviors and moods are more than not, out of control. Aware of how afraid I am.

I followed Marianne down the spiral stairs after the program. Her mobility is fine, in fact she is quite agile, while I was hyper conscious of descending the stairs and held onto the banister taking careful and deliberate steps along the curves. When we were seated in front of the Buddhist shrine, and Laura Sloan described the way that each object in the shrine is supposed to engage the different senses which combines to create a transformative spiritual experience, and I blurted out, “that’s like Synesthesia,  a European concept embodied in the 20th century teachings of Madame Blavatski”.  Marianne was seated next to her husband, but got up from her seat abruptly and  started pacing in circles energetically.  One of the volunteers (Linn) got up and held her hand and paced around with her. Later, I watched her and her husband look at books in the bookstore after the program. She picked up a book and leafed through the pages. It all looked very normal, until she began pacing around the bookstands, circling around and around.

These damned diseases effect each person so differently.

When I got home, I looked up her name and found this article about her. It describes  the private one on one art program that her husband has enrolled her in, where she paints and draws and has photographs of her and her colorful paintings of simple faces and figures. The teacher says she has to be watched carefully, because she will sometimes try and eat the art materials.

https://desireevisualmedia.home.blog/2019/01/09/the-journey-begins/

My husband and I walked to the other floors at Rubin and saw an interactive sculpture made of metal and LED lights, titled Breathless, by a Russian artist, Alexandra Dementieva.  It is activated when a person walks inside and blows into a tube attached to a fan, an anemometer, which measures wind speed.

I use my photographs to remember where I’ve been, what I’ve seen, and who I’ve met. My Alzheimer’s visual encyclopedia.

On the way home from The Rubin museum I photographed things I saw outside of our car window. I used to teach art history and when we passed the main New York Post Office (across the street from Pennsylvania Station), a structure built in 1912, that takes up two city blocks, I could not remember the name for the type or order of the fifty columns grace the facade of that building. I taught Roman classic style to my students, and wanted to remember this.  I knew they weren’t Doric, with the simple circular capitals at the top and bottom. I knew that they weren’t Ionic with the two paired spiral scrolls. I remembered that the decorative leaves on top are called acanthus leaves. But I was not able to remember the name for these columns until after we drove past them and were well on our way to the Lincoln tunnel. There is a time lapse in my retrieval of memory. Things still come back, but it takes time. Corinthian. Sigh of relief, I remembered finally. They are Corinthian columns and they will stand proudly long after most of us are gone. I always liked that word, Corinthian.

I panic when I’m trying to remember and can’t remember. The other night I looked at a photograph of my son and daughter-in-law with their baby daughter, who is now three and half. It was taken when she was around one. I realized in that instant I did not remember my granddaughter’s name. I panicked. How could I forget that? I wanted to bang my head on the wall, anything to remember my granddaughter’s name. I paced around urgently, and her name came back to me. Ellie! Eleanor Margaret. My darling granddaughter.

I do not want to live through this disease forgetting everyone and everything, words, faces, nuance, the very texture of life. The way everything relates and goes together. The names of streets, countries. Names. How to walk. How to eat. How to speak.

In Alzheimer’s, memory disappears in layers. First it is short term term memory that goes. leaving long term memory, memories of being a young adult, a teenager, childhood. Then that goes too leaving nothing in it’s wake. A person bereft of memory. What is a person without their memory? The brain forgets how to tell the body how to walk, how to pick use a fork or spoon or knife. Finally the brain forgets to tell the body to breathe, forgets to tell the heart to beat.

In the elevator coming down to the street, after the last Lincoln Center Moments program, four of the aides surrounded this old woman in her wheelchair. She was anxious about something I could see. Couldn’t make out what she was saying. One of the aides said, “you better stop it or I’ll call the police”. I was aghast, and turned to Jeanne, and I said, “She shouldn’t speak like that to her.” The aide overheard me and said, “She knows that I’m kidding”. I said “How do you know that?’ She said, “you should mind your own business.” When we got on the street, I saw the bus for The Atria, which is a nursing home. I understood that this is how the aides bring the people in the wheelchairs. They dress the patients and stick them in their wheelchairs, and herd them to the free access programs for social engagement and fun.

Soren and Michael

Reading my words and seeing my drawings does not really tell you what my experience is. It only tells you that I can still draw and write. Writing is important to me. It’s a transformation of the waste that is turning my brain into a trash bin. It’s a way to allow my reality to be what it is, and reflect on it. It’s a way to get unstuck. It is here that I can be truthful about what this disease really does to people who have it, and what it is doing to me.

Facts: Alzheimer’s shortens a person’s life. Younger onset usually progresses fast. A 50 year person with Alzheimer’s loses 5 times as many years of life as a 75 year old with this disease. Some progress faster than others. Before it becomes fatal, it breaks down the body, makes a person weak, until they can’t physically move around by themselves. I have seen it. Michael who was a partner in his law firm, is 70 and has had Alz for 10 years. I’ve seen him in his wheelchair unable to move his arms or legs, unable to speak. He is cared for 24/7. Fed, bathed, diapered, transferred from the bed to the chair. I’ve seen a sixty year old woman shuffling, stooped, unable to speak. I sat with a woman who could not remember that she was an adjunct professor at a prestigious university and whose husband leads her around by the hand, or she would wander off. I have seen the wheelchair brigade at Lincoln Center after the program for people who have dementia. I glanced at the woman in the wheelchair holding a soiled stuffed animal, unable to speak, as her home health aide stood behind her texting on her phone.

I know each person who has Alzheimer’s is different. Many who are diagnosed do not appear to have a progressive neurodegenerative disease. They aren’t able to do math anymore or read an analog clock. They have lost some of their abilities. But they seem normal. They are either at the earliest stage or actually may not have the disease. I know a man who is 65 and was a plastic surgeon who was diagnosed 5 years ago. He certainly can’t perform surgery any longer, but I’ve watched him and see that in many ways he appears perfectly normal. There are the ones who die very fast, that I have read about, dying within two to five years. The Alzconnected forum (www.alconnected.org) is a place where caregivers and spouses share their stories. There are so many stories of younger onset, and how rapidly the disease progresses in many. Some are incontinent within a few years, can’t feed themselves, and talk to inanimate objects. Some are wanderers and some lose the ability to ambulate early.

I’ve heard this difference in levels of progression referred to as the snowflake theory by a man who is an Alzheimer’s Association advocate and was diagnosed in 2014 at the age of 54. That’s five years. He travels all over as an advocate to bring awareness to the disease. He must be progressing really slowly. I saw a photo of him on FB wearing a bright blue shirt and an immaculately tailored pink suit. I was not hallucinating. As wild as that sounds, a person with Alzheimer’s is not together enough to groom themselves with that kind of precision, unless they have a personal groomer/tailor. But what do I know? I have Alzheimer’s.

So, obviously I don’t believe in the snowflake theory. I understand that some progress more slowly but they progress. I think that many are misdiagnosed. They may have mild cognitive impairment and won’t ever progress. Some on the zoom chats are living mostly normal lives, and still functioning quite well, while others are losing the ability to speak or use a computer, or swallow or walk and are dropping like fleas within two to five years. It’s said the brain is so complex that there’s no way of knowing until there’s an autopsy.

Don’t fault me for being honest and questioning. I just know what I am experiencing, and what I see with my own eyes, and how devastating it has been for me and for my family. I do not want to minimize the symptoms some are experiencing who have been diagnosed with Alz, or Lewy bodies or FTD. But when I see some decline within a few years and become a totally different person, and I see others who hold their own and travel and give talks and presentations, I have to wonder if they have a neurodegenerative  disease or if maybe they really have something else. Only time will tell.

There is a big can’t in my want. The desire is there to do more, to write, to fight this disease harder, but my drive, the fire, the passion, the energy, the directed behavior – is impaired. My mobility has decreased exponentially. I am finding it harder and harder to walk, especially outside. Rarely do I go out alone now. I don’t know how to dress for the weather. Always cold, I am still wearing long johns under my pants. Yesterday it was warm and Theresa and I went out. I was wearing my down winter coat and was many blocks from my home and sweating. My sleep is fragmented. I sleep an hour and wake, then three hours. My appetite for food is gone most of the day, but then I get ravenously hungry at 2 or 3 am and eat ice cream. I’ve gotten fat as a result. It’s embarrassing. I am certainly not as well as the people I meet on the dementia zoom chats, and I am not as declined as many I’ve seen in person who are incoherent and unreachable. I am a point  where I need help with basic activities of daily living and have a part time companion who is supportive, goes for walks with me, has taught me to crochet, and helps to clean my house. My husband prepares my meals, and my friend Jeanne brings a meal once a week. I’ve accepted it. I do not have the energy to fight this disease much longer. It has sapped my life force. It was diagnosed as Alzheimer’s but now my liver enzymes are very high and it’s looking like my immune system is failing. Still, I can still smile and play Scrabble. I force myself to shower. I do my own laundry. I can use an iPhone, and text and I play Lumosity. Make no mistake about it, this is a tragic disease, and this decline in me has happened in less than 3 years since the diagnosis.

I worry for my daughter. This has impacted her greatly. She is beautiful but looks so sad. Daughters need their mothers in their twenties, but she has lost hers, even though I am still alive. My daughter still calls me mama, and it breaks my heart because I am hardly the mama I was. I tell her I love her in texts every day. I pray for her happiness every day. my illness has made her so sad. Some daughters become stronger when they lose their mothers to diseases like cancer. But losing one’s mother to Alzheimer’s is a slow deleterious process. It is torture for the person going through it, and it is torture for the family members to witness. I love that girl and mama can’t make it better.

Only being with me tells the story. The blog is only pictures and words.

Theresa knows. Jeanne has a good idea what this is like, because she spends time with me and has watched me struggle transferring food she has brought me from a container to a plate. She has been my friend and come to my home once a week for the better part of a year. She has seen the progression. My husband obviously knows. He is the one who witnesses me pushing myself  to get out of bed, chew and swallow food, fear getting dressed because it’s so confusing and anxiety provoking to not remember how to choose appropriate clothes for the season, to have to dress from clothes on a hanger prepared the night before. He sees me reading my list, and checking off each thing I am able to do. He gets angry when I ask him what is next. He says to look at my list.

The very nature of living with this disease is terrifying enough when I am alone. Add to this people who were diagnosed with Alzheimer’s, who are functioning well for years and years, who travel, and laugh and socialize, and jump out of planes (!) and I feel guilty that I am not able to be like them, that I am struggling to get through each day. Why am I progressing faster? Snowflake theory?

There’s only one way to get off this train, and I am afraid. I cried in the arms of Krishna, my yoga teacher. I was too weak to do the asanas. I cried that I am afraid to die, that I am afraid to be alone, afraid to die alone. The tough ones will say, “but we all die alone”. The funny ones will quote Bugs Bunny (“No one gets out of this alive”). The ones of strong faith will assure themselves they are going to heaven. The highly educated caregivers without faith are practical. They caution to not allow the disease to take two people. They advise that their job is to survive, because the person with the disease will not.

I cried, after feeling so weak that I could barely walk home after the walk with Theresa. I cried because I’m getting weaker and I know what that means. In 2015 I was weight training and riding my bicycle 5-10 miles a day. I was teaching eight classes. I had rewritten a script that was Hollywood bound. Four years ago. Now it is hard to take a deep breath, food textures feel so strange in my mouth, it’s hard to gather the food inside my mouth and swallow.

A year ago my walking was not affected. My speech was more or less normal, although I would lose my train of thought while describing something, I could jar my memory and get back on track. Now there is babbling and incoherent words strung together. Words  comes out of my mouth and I do not recognize the person who is speaking, although I know it’s me. I hear the voice of a little girl, I do not recognize. Would an exorcist help?

Enough of that torturous rant. Enough.

Now gratitude. My daughter always reminds me to have gratitude. I will heed the sage wisdom she has developed at the tender age of 28.

I have lived long and worked and played hard. My time is waning but I got to see three grandchildren born. The beautiful babies! I have seen my son marry and thrive. I am blessed to have a beautiful daughter, the jewel in the crown, who I adore. My husband tells me he loves me. He is under a great strain taking care of me and himself, yes, working, driving far back and forth to work, and managing everything. But he tells me he loves me. So good to hear that, even though I know how it pains him to see me like this.

So I cried in Krishna’s arms. Such a release. I have not been able to cry in over a year. I am grateful to have been able to cry. The only way to release the pain is to feel it.

After he left, I crocheted some more of the brown yarn that Theresa brings. I am grateful that I can do that. I am grateful that Theresa comes to see me. She held my arm as we walked. I needed her there, next to me. She teaches me to be grateful. To accept help. I am accepting the help given.

The brown scarf I am crocheting

I have gratitude for the Passover seder we attended at my son’s home. I have not been able to cook or prepare recipes for years. In order to have a seder, I told my daughter in law, I would prepare the chicken soup and the matzoh balls, the choroset, the roasted asparagus and the seder plate. It was all because of Theresa and her motivating me, believing in me, that i was able to do it. I sent her the recipes and she shopped for and brought the ingredients. I showed her how I used to make the soup and the matzoh balls. She assisted me, but I did most of the cooking She helped take out the pot and helped me set up the small Cuisinart, to grind the walnuts and shred the apples for the chorset, which was my specialty. She made the brisket from the recipe I sent her, and it was delicious. She roasted the lamb shank for the Seder plate. I assembled it – the egg, the bitter herbs, the parsley, the choroset, the roasted lamb shank, the matzoh, the lettuce (vegetable). Here we were in my kitchen, Theresa, the good Catholic girl, learning about making the food for a Seder, from me. There I was wearing my adult bib in place of an apron, and we prepared these foods together – me teaching her about the tradition, and it’s significance- remembering how this holiday was so sweet and special for me growing up in the Bronx — how it signaled a time of joy and togetherness. I wanted to feel some of that again. When we arrived on Saturday evening, my “muchtanesta” (Yiddish for my daughter-in-law’s mother) had already set the long table. Elina’s brother and girlfriend were there, as was Elina’s step father, who made a matzoh babka and a turkey. Elina distributed the haggadah’s (the text recited at the Seder, that includes a narrative of the Exodus). Ellie, my granddaughter, was dancing around excitedly. The twin babies slept soundly. I ended up leading the Seder. My timid withdrawn self was shelved that night, as I taught Elina’s brother and his girlfriend the songs Dayenu and Chad Gadya.

These are the lyrics to Chad Gadya. I used to love singing this along with my father and mother and sister. The kid (the goat) symbolizes the people of Israel, the innocent little goat devoured successively by one power after another. The ultimate hope is that one day the Eternal one, would destroy the Angel of death, and the human propensity for conquest and violence. Israel would live in peace and harmony with her neighbors, and all would be right with the world.

One kid, one kid, that father bought for two Zuzim. One kid, One kid.

And the cat came and ate the kid that father bought for two Zuzim. One kid, one kid.

And the dog came and bit the cat that ate the goat, that father bought for tow Zuzim. One kid, one kid.

And the stick came and hit the dog, that bit the cat, that ate the kid, that father bought for two Zuzim. One kid. One kid.

And a fire came and burned the stick, that beat the dog, that bit the cat that father bought for two Zuzim. One kid, one kid.

And the water came and put out the fire, that burned the stick, that beat the dog, that bit the cat, that father bought for tow Zuzim. One kid. One kid.

And an ox came and drank the water that put out the fire, that burned the stick, that beat the dog that bit the cat that ate the kid, that father bought for two Zuzim. One kid, one kid.

And the butcher came and slaughtered the ox, that drank the water, that put out the fire, that burned the stick, that beat the dog, that bit the cat, that father bought for two Zuzim. One kid, one kid.

Then the angel of death came and slaughtered the butcher, who slaughtered the ox, that drank the water, that put out the fire, that burned the stick, that beat the dog, that father bought for two Zuzim. One kid. One kid.

Then the Holy One, Blessed is he, came and slaughtered the angel of death, who slaughtered the butcher, who slaughtered the ox, that drank the water, that quenched the fire, that burnt the stick, that beat the dog, that bit the cat, that ate the kid, that father bought for Zuzim. One kid. One kid. 

Musical Shabbat at USH

On the last day of Passover a gunman opened fire at a synagogue in Poway, California, near San Diego, killing a 60 year old woman, Lori Gilbert Kaye, and wounding three others, including the rabbi. The rabbi shepherded the remaining congregants to safety, and he waited for the authorities to arrive. Despite his wound, he got up and spoke to those who remained inside. “Just giving everyone the courage to know that it was just 70 years ago during the Holocaust we were gunned down like this, and I want to let my fellow Americans know that we’re not going to let this happen.”

I think about my late parents and how their families were murdered in Poland. How they rebuilt their lives and loved living in America. My mother died two weeks before 9/11, in 2001. She would have been devastated to see this violence happening in our country and throughout the world. The religious violence, the divisive racism. But history repeats itself, and the hatred we see all over cuts across all religions and races. The Christchurch massacre in New Zealand in March. The bombings in Sri Lanka on Easter Sunday. Last October the shooting in the Tree of Life synagogue in Pittsburgh. Last week the Poway synagogue outside San Diego. The world has not learned a lesson. As long as the economy keeps afloat and people can swipe their debit and credit cards, skyscrapers continue to built and business is booming. Mo money, mo money, mo money. The news is just a flash on the buzz feed.

Walking with Jeanne

Portrait of Mimi and Dan

Professor Alzheimer’s here. Yes, friends, there has been a load of progression in the past weeks since I last wrote on March 15. That was almost four weeks ago. I used to call progression step downs. A step down to a new level of disrepair  with decreased motor function, but coming back to writing is a step back up. Which is why it’s important to keep writing. It means I’m taking a personal and public inventory. Tracking the changes in myself. Aware. Reading. Learning. Sharing.

I still use  photographs to keep a record of what happens each day, although a lot of the pictures appear to be more and more repetitive, just from different angles and vantage points. Photographs from my walks look haunting and dreary to me. I liken taking these to purposeless activity, but I do know I take them to see if I walked outside on certain days. I do read the news, the New York Times, everyday. How much do I retain – probably a little.

Although walking is not easy for me, and sometimes I wobble and veer a little to the left and right, I take walks in this small city, the smallest in the US, in one direction or the other. I go slowly. People pass me. I am cautious not to fall. North, South, East and West. When the synagogue facade appears in a photograph, I know I’ve made it to First and Park Street. When I see the viaduct or the sign for the restaurant called Carpe Diem (which I remember is Latin for “Seize the day”), I know I’ve walked to 14th Street. Photographs taken in Manhattan mean it’s a special day. An outing. It can be a trip to the Rubin museum, or less often to other programs like attending a program at Lincoln Center, which I went to with Jeanne last week. Then there are the family visits which I cherish. The visits to our son and daughter-in-law’s home and seeing our grand babies. Finally, we did visit our daughter and her boyfriend in their new apartment in Manhattan, and I photographed them and took pictures (and later on the roof). Making the drawing (above) was aided by a photograph I took of them on the roof as we looked out in all directions over Manhattan. They live right next door to the United Nations. When we were on the roof,  I walked towards the parapet and stood looking down. I thought I recognized an outdoor sculpture by the late Japanese artist Isamu Noguchi. But when I researched the piece, I learned that it is a monumental Barbara Hepworth sculpture (in summer it is in a pool in front of the 39-story United Nations Secretariat Building, but now the pool appeared to be a circle with wavy lines).

I knew some of her work, but researched Hepworth (1903-1975) more deeply anyway. I knew she was an English artist and sculptor. But I read that towards the end of her life, she took sleeping pills and smoked cigarettes, and that fatal combination was the cause of her death at age 72, when she fell asleep and her bed caught on fire.

To the left of her sculpture (Single Form, 1961), I instantly recognized the Henry Moore (1898-1986). The sculpture is of a reclining woman (Reclining Figure: Hand). Moore was an English artist, best known for his semi-abstract monumental bronze sculptures which are located around the world as public works of art. He is considered the foremost British sculptor of the 20th century,  with commissions all over the world. Seeing these two sculptures, in no way eclipses the United Nations building itself, which from my angle looked like a giant computer mainframe. The building (the Secretariat), and the United Nations were created to maintain international peace and security, develop friendly relations among nations, achieve international co-operation and be a center for harmonizing the actions of nations. It was intended to have great world significance! In 1946, Winston Churchill intoned, “A world organization has already been erected for the prime purpose of preventing war.  We must make sure that it is fruitful, that it is a reality and not a sham, that it is a force for action, and not merely a frothing of words, that it is a true temple of peace”.

Yet there have been 80 wars between the UN’s founding in 1945 and the end of the Twentieth century, and dozens more this century. It’s not fair to blame the UN for the fallen nature of man, but it’s fair to blame the UN for failing to live up to it’s own mission.

I had a birthday on March 28 and I turned 65. It’s been two years and eight months since the first diagnosis when Dr. Noble ordered a Spect scan at Columbia Presbyterian Hospital and it then showed diminished blood flow to my parietal and temporal lobes, the pattern of early Alzheimer’s disease. It’s been two years and a little over 2 months since Dr. Wiesniewski ordered the FDG Pet Ct, at NYU Pearl Barlow Center for Memory and Evaluation. It showed hypo-metabolism of the same lobes, the pattern of Alzheimer’s. It’s no longer early stage. That’s obvious to me. Everything has changed now. It’s been hard to walk any distance over 2 miles. My speaking sounds and is different. The babbling has increased. Nonsensical speaking. I talk to myself in circuitous sentences and give myself directions to do the simplest of things. My crazy brain is off on it’s own now, making my mouth and vocal chords respond to synaptic dysfunction. Of course, I do not do this in public. These monologues are private, but not here. Here is where I tell it like it is. I am not this monster. It’s a disease. Happy Birthday to me.

We went to my son’s home last Sunday to celebrate my birthday and brought a chocolate mousse cake. I knew that my 3 and 1/2 year old granddaughter would like blowing out the candles with me. I pictured what 65 candles all aflame would look like, but I asked for 11 candles, adding 6 and 5. The photograph is of the cake and I’m standing with Ellie, about to blow out the candles.

Jeanne wanted to take me lunch for my birthday. We didn’t go. Instead I asked her to go for a walk with me on Washington street, the main street. That would be her gift to me. I told her stories about the people and stores and things that happened over the years. I pointed out the house where we lived when my son was born. We passed the pizzeria famous for the largest slice, and I told her about how I would watch Benny, the owner from my window across the street, thinking he looked like Giancarlo Gianini, as a young Italian movie star. I told her how Benny was indicted for smuggling heroin in pizza canisters, and how he went to prison for 15 years. For years before he died, he  used to sit outside the pizzeria after he got out of jail. He was a fat smiling old man shmoozing with the customers, and then he died at age 77. Prison and all that pizza and he still got to live to 77.

We continued walking South down Washington Street, and went into Anthropologie, the clothing store where I used to love to shop and try on clothes. I hadn’t gone in there in well over a year. I showed Jeanne the layout of the store and took her downstairs to show her where the sale items and racks are displayed. My memory is okay and my orientation is pretty good, but walking down those those stairs at Anthropologie, I felt so wobbly, and held onto the bannister. For me the physical manifestations of Alzheimer’s feel more daunting than any other losses. I wonder if this is the vascular part of the disease, or if this is only Alzheimer’s, but also Vascular dementia. Mixed dementia likely.

I used to love to try things on in the dressing room at Anthropologie. I couldn’t do that now, Just dressing myself from clothes I put on the hanger every night and hang on the hook in the bathroom, requires so much physical coordination, planning and memory. The days of tossing my clothes onto a bench in the dressing room and trying on item after item, checking the fit in the mirror, making the choice of what to buy and what didn’t suit me, are gone. I’m lucky that I can still dress myself. Some people who have Alz need help with that. It’s disconcerting to my husband to hear me giving myself instructions…”put your left foot, though here. Put the right one through this pant leg. Put the shirt on now, and pull up the pants. Put the shirt over my head. First left sleeve then the right, but I’m glad he doesn’t have to dress me. Hope I never get to that point.

I thanked Jeanne for my “birthday walk”, and for spending extra time with me.

April 9, 2019- My son Soren’s 37th birthday. I sent him a text yesterday morning saying Happy Birthday, and also sent a photo of an artwork that is a photo with drawing made by an old friend in 1983. In the image we’re in Palenville, New York, which is near Woodstock. I was 29 and Soren was just over a year old. I also sent this to his wife Elina and to my daughter and husband.

My son, Soren, is a father of 6 month old fraternal twins – Michael and Sara and a 3 and 1/2 year old daughter, Ellie. I am glad that my daughter Mimi, comes with us to visit them. She’s a loving aunt and I see that it’s the babies, the next generation, that will keep her close to her brother and his family. She is in now in California on a trip with her boyfriend. We all stay in touch by text. I think she’ll be back in a around a week, but have no idea when I will get to see her.

I used to say Soren was our Passover baby. Sometimes Passover would fall on his birthday. This year it’s later in the month. This year it’s April 19 – 27. I used to be quite observant, and would remove the chametz (leavened foods) from our home. I would always have matzoh here during this holiday. I would be the one to prepare the seder, the ritual feast that begins the holiday. I can no longer cook and shop by myself, and there will not be a seder here. Sad. Last year my son’s in laws had a seder in their home, and my husband and I attended. I was already well into the disease, and was apprehensive about how I would present to others. I have no idea if they will be hosting a seder this year. While it is quite hard for me to travel and be with crowds of people, I still want to partake in this ritual and be with family. Our daughter usually goes to her boyfriend’s family for seder’s now. We shall have to see what happens. The last time I had a seder in my home was in 2014, before I got sick. It was just after my son’s wedding and it was a joyous time. Photos from that time  show us all together laughing and celebrating. One never knows how precious the moment is. Carpe Diem. Seize the day. .

My life is very limited now. I have routines to get through each day. In order to dress myself, I put my clothes on a hanger every night before I go to bed, and carry them downstairs with my shoes, and hang them up in my bathroom. Now that the weather is getting warmer, I get confused about what to put on the hanger. On Monday it was over 70 degrees and the long johns and pants that were on the hanger, were too warm to wear. Eliminating the long johns was confusing, but got done and I managed it myself. Transitions like the change of season throw me.

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My sleep patterns have changed and I fall asleep while I am sitting on the couch at night after dinner. I fall asleep for short intervals, while I’m reading. It’s like falling into an abrupt coma. Then I wake and see that I am laying on my iPhone, and grab it to become reoriented. Minutes have gone by.

A BAD DREAM:

Last Sunday night I was sitting on the couch with my computer and writing. It was already 3:30 am. My husband came down the stairs and alerted me that I had to get to bed. I concurred and went through the routine of writing the list for the next day, brushing my teeth and taking off my makeup, Taking the tea, my robe and phone upstairs, and setting up my clothes for the next day. Then I climbed into bed and immediately fell asleep. I fell into a dream, actually a nightmare. I dreamt I was in our living room, and there was a big purple Donghia couch, the one we had before I was a Fulbright in Poland, the one I threw out when I returned, finding it ripped and tattered from the cat’s claws. In the dream, my husband was in the kitchen, and I was standing behind the couch. I heard someone frantically trying to get in through our locked front door. I alerted my husband. But then I knew who it was. I knew it was my mother. My mother was frantically trying to get into my home. I woke up and remembered my mother is dead. The dream felt so real. Realer than the life I am living now.

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Meeting Bill and Beth at Lincoln Center

The program at Lincoln Center that I went to with Jeanne is part of the Accessibility programs for people with dementia in New York City. A performer named Imani Uzuri, led a large group in song, mainly Christian spirituals from the deep South. I was surprised that this was the program, expecting a more seasoned performance, and surprised that so much of it was interactive, since so many of the people were in later stages of dementia, like the woman sitting in a wheelchair with a blank stare and a large stuffed animal in her lap. The singer was expecting many of us to know the words to songs I had never heard. Many of the old black women in the audience were familiar with the tunes, but I wasn’t. I think those old black women, are just old, and the care they receive is because their bodies are shot, not their minds. Such a stark contrast to those who are in moderate to late stage Alz. No comparison.

Before the program began, I noticed an attractive woman accompanying a neatly dressed nice looking middle aged man, sitting in the back of a room, which was mainly filled with much older people with their companions or home health aids. There were walkers and wheelchairs, and about a third of the people looked like they were in the later stages of Alzheimer’s disease or dementia. I was curious about this man, and introduced myself to Beth, his companion. She told me that Bill is sixty and has had Fronto Temperal Degeneration for nine years. He had been a physician at Mount Sinai Hospital. He doesn’t speak much at all, although I saw him stand and ask (or indicate) to Beth that he wanted her to move her backpack about an inch on the chair. She did this and he was satisfied and went back to his seat. I told Beth my story, about my Alzheimer’s diagnosis, and I told her about my blog. She was very receptive and wrote down her email address. She told me about Bill and how he is very OCD (Obsessive Compulsive Disorder)  and I was struck by the commonalities I share with him. Beth told me that he plays Lumosity games obsessively on his iPhone. I glanced over and saw him engrossed in his phone. After the program, I rode down the elevator with them. I turned to him and spoke, telling him I heard his story, and that I have a lot of respect for him. He seemed to understand, looked directly at my face as I spoke, and seemed to appreciate what I was saying, but he said nothing. We were led to a large classroom, and I took a seat next to Jeanne. We sat in a large circle and I looked around. These people were really impaired. Some who spoke were saying things that were unintelligible. Some were silent. I smelled the contents of diapers. I was really alarmed by that. The discussion centered around creating a mantra, or coming up with words for our reaction to the musical program. The leaders were two very young women, perhaps volunteers or art therapist trainees who work with people with dementia. The caregivers were the most engaged. Tables and chairs were set up to work with construction paper. On the table in front of each chair were a few markers, a small package of model magic clay and a flower. To me this reeked of nursery school. Beth told me that Bill does not like to touch clay or art materials. I also hate getting clay or viscous materials on my hands now. In defense, I pulled up some of my drawings on my iPhone and showed them to the young volunteers, emphasizing that I wasn’t interested in “playing” with Crayola markers, model magic, or construction paper. One of them asked if I was a caregiver.

By this time Bill had gone to sit outside the circle and was on his iPhone. I assumed he was playing Lumosity. Beth said he does not text. She said he lives alone, but has 24/7 caregivers with him, meaning someone is always with him. I would so wish to speak with this man, and hear his voice and thoughts. Beth wrote to me the following day, and said she’s spent an hour reading my blog, and found it beautiful and tragic. Not unlike other caregivers who have written to me, she said it gave her insight into what Bill must have gone through in the earlier stages of his disease. This got me thinking, how very much my symptoms are like FTD, with the behavioral manifestations, the OCD, the rigid routines he follows (like me, he eats the same things every day). The main difference, sadly for me, is that Bill does not appear to have any motor impairment. I watched him walk and noted how normal his walking appears. In contrast, the people with Alzheimer’s were either shuffling slowly with stooped postures, or in wheelchairs. I am experiencing what the neurologist called mild dis-coordination. It certainly does not feel mild to me.

My experience of this illness is that I am in and out of lucidity. Is it just a cardinal or one of my parents coming to help me transition? Is this a delusion?

Jeanne in her kitchen last week or was it two weeks ago?

Old Hoboken. This sign has been there as long as I can remember. There must be some really great stories about that hotel and what went on there. The original Hotel Victor was opened back in 1916 and named after the owner’s son. The hotel’s main customers were ship workers traveling from Europe to work in New Jersey’s shipyards. In the 1920’s during the era of prohibition, the basement of the hotel was a Speak Easy.

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I passed two former students playing tennis in the grounds of the park. I recognized them and as I passed one of them recognized me, and spoke to the other. “That’s Mrs. Packer”. Heaven forbid he should say hello. He looked at me quizzically and I sensed that he was told I have Alzheimer’s. The other students parents know my story and he and his brother have seen me on the street, but do not say hello. They see me but their response is to withdraw. I taught both of these students sculpture and art history. Maybe it’s my paranoia, but I don’t think so. I sensed it. Stigma. I know how stigmatized this disease is.

Just say hello to me when you recognize me. I will not bite.

I wonder if my story will be woven into the tapestry of Hoboken history. The wonderful teacher who raised her family here, and was an integral part of the community from 1979 until …..she came down with Alzheimer’s. Will I be thought of as the imperfection in the tapestry? Will that be how I am remembered? Will I be remembered?

Portrait of Jeanne

The regularity of Jeanne visiting on Wednesdays has formed a bond that goes beyond routine. She is my friend and confides in me, and I in her. Yes we play Scrabble. She brings food she has lovingly prepared. Where most people who I’ve been friends with have disappeared since this disease has progressed (including her sister Ruth who promised to be my friend until the end and ended our friendship by throwing me out of her apartment!), Jeanne is not that kind of a person. She practices acceptance. Kindness. She is a woman of her word. A woman of valor. Principled. I admire her honesty. The way she knows herself. Her generosity. Thoughtfulness. She’s rare in a world where people forget about others who need them. She still has friends from her youth. One is not doing well, and is in the throws of early dementia. She stays in touch with her and visits her. Jeanne does not forget. Her face radiates kindness. Honesty. This is what aging gracefully is like. The body going through it’s ordeals, but recovering. Alzheimer’s is not like that. there is no grace in it. Maybe it is for the people who progress extremely slowly in Alzheimer’s, there’s an opportunity to have a sort of glissando. But when it’s not mild and runs ragged over brain and body, as it’s doing to me, it affects everything. Behavior, cognition, executive function, sleep, speech, eating, swallowing. It’s impossible to grasp the severity of this experience unless you have known someone who had the disease. How can someone who is experiencing losing their mind, describe it, and still make art. It’s exactly what I do here.

I had previously written about how heartbroken I was that I hadn’t heard back from a former colleague, an American history teacher I’d worked with and knew for twenty years, after I sent him an email pouring my heart out to him about how devastating having this disease is. In hindsight, my heartbreak was misplaced,  because he did write back and offered as much insight as he could. He said that it pained him terribly to hear about the hand I have been dealt. This is a man who survived cancer and 12 rounds of chemotherapy when he was quite young. He’s a survivor. The truth in his words were this- “One can only try and live life to the fullest as best as one can, for as long as one can —and as life goes on one’s ability to do that, and what constitutes “life to the fullest as best as one can”, will inevitably change and be impacted by forces and conditions beyond our control”. These words ring true. Alzheimer’s and the deterioration it is causing me is beyond my control.  I appreciate his frank honesty. His suggestion to look for solace in the Stoic philosopher’s Seneca, Epictetus, and Marcus Aurelius, was not so helpful. When I looked them up I couldn’t find any solace that applied to me, but it showed me that he understood that finding solace at the end of the day, or some way to deal with this, even for a few moments each day, is imperative. It’s that I have to search in my own way, which is to grasp and find the way to accept what impermanence and change means for me. The disease is taking away so much now. Yes. My mobility is decreasing, my balance is terrible, and I often feel like a lumbering beast.  Most mornings. I lay in bed, unable to get up. My body hurts, my torso is stiff and my shoulders are in pain. My husband came into the bedroom on Monday morning at 11am and asked if I wanted to get up. I told him I was in pain, and he brought me a tea and two Ibuprofin. My hero. I swallowed them with the tea.  It is frightening to witness how fast this illness is progressing now, and how much of the cognitive combines with physical decline. Alzheimer’s breaks down the body. My husband keeps me going when he is here. He makes sure I get out of bed, makes sure I eat. Does the food shopping, and cooks, takes care of the building, our house, his house, our home. He pays the bills, drives to work in another state  three days a week, and hired a part time companion who has a great deal of patience, and a yoga teacher to work with me. He takes me for walks when he isn’t working. But the impact of caring for me, his wife who has Alzheimer’s disease, along with the strenuous jobs he does, is impacting greatly on his health. He has begun to see a therapist on Saturdays. It’s something. He says it’s better than nothing. It is so unfair that this disease happened, and it’s so unfair that it is not only killing me, but is also affecting him adversely. I’ve done what I can to minimize this but in this disease the ill person needs a lot of care, and that need increases and increases over time. He has become the reluctant caregiver. Very reluctant. I feel sorry for him but also I’ve been so angry with him for missing the best and strongest years, when he lived in Connecticut for 9 years and I had way too much responsibility and stress. I believe that all the stress contributed to my getting this at this age. It’s water under the bridge now. I am very ill and he is doing everything he can to keep me alive and not be bed bound, and out of the clutches of the nursing home reaper.

 I came upon an article in the New Yorker written by a palliative (end of life care) doctor (Sumitra Puri, M.D.) called The Lesson of Impermanence. In it he wrote about how a chance encounter with a sand painting helped him learn to doctor patients he would lose. He became increasingly anxious and despondent, trying massages, therapy, hiking, meditation. But his sadness grew stronger. He searched for a community among others searching for support. He found a Vietnamese Buddhist temple a short drive from the hospital. There he whispered prayers asking to help find the strength and take away his sadness. One evening the temple’s main hall was unusually crowded. People had gathered around a table where they were creating a sand mandala. Metal cups filled with sand of every conceivable color lined one end of the table. The mandala’s circular shape symbolized both the cyclical nature of birth and death and the indestructible nature of the universe. The first evening the monks painted a flower with multicolored petals, the next evening the flower was surrounded by circles of deep blue and pink and rectangles of turquoise and gold. But the following morning when he looked in shock as one of the monks began to move a feathery brush over the mandala, swirling together the gold and blue, the circles and the rectangles, sweeping away his work just as methodically as he had placed the grains of sand in the same space. He cried because the hands that created it, were content to let it go. He wrote that the Bhagavad Gita which his father had read to him as a child, emphasizes that change is the law of the universe. The Vietnamese monk Thich Nhat Hanh reminds us that “impermanence does not necessarily lead to suffering. What makes us suffer is wanting things to be permanent when they are not. When he returned to the hospital the next day, he thought of the mandala as he sat with a breathless man his own age dying of lung cancer, and an agitated woman in the final stages of dementia. He felt compassion for them but didn’t leave that day consumed with grief. He accepted his patients’ circumstances rather than fixating on their inherent tragedy. He focused instead on changing what he could; easing breathlessness and agitation, explaining hospice services to their despondent families. The creation of the mandala and it’s being swept away, reminded him of the circularity of all things, of change as life’s only constant. 

Wishing versus reality.

As I lay in bed coming out of the stillness of sleep, I imagine myself getting up and being normal again. Having strength. Walking normally. Speaking normally. Not thinking about how to get through each day. Not aware of everything as an obstacle that needs to be overcome. Not having to figure everything out. Not having to force myself to remember how to do things. Oh, how I wish for the ease of normality. The things people take for granted. As soon as I stand and walk, I have the jarring realization that my body no longer listens to me. I lurch. I lean. I use pieces of furniture to support me as I move around. I go slowly feeling like I will fall. Hold the banister and carefully descend the stairs. Turn up the heat as I am always freezing now. Turn it down because I start to sweat. Dis-regulation. My brain and body no longer belong to me.

A memory- I am getting off the #1 train (the IRT) in Manhattan at 79th street. I rush ahead through the turnstile and race up the steps. I am strong.

Three years ago. 2016. I was still strong. It’s like my brain and body said, “now you have reached your expiration date”.

Dina and Todd’s living room

Boredom and depression are huge factors in this disease, and along with that comes so much anxiety, realizing that the life, strength and energy I need to do things is severely compromised. I want to go and do and see. But for me it’s too late to fulfill the bucket list. My trips are now local. Walks around my city. I have to be careful not to overdo. The other day, I walked with Theresa to the PATH train and back. I showed her the route I used to take all the time. Wanted to familiarize her with another part of this city. Taking the same 1.5 mile walk with her going North, had become so depressing. So we went downtown –  set out for Hudson street, through Stevens park, across River street then down to Frank Sinatra Drive, and walked along the walkway beside the Hudson river. But I had a yoga session planned with Krishna, and we had to make it back in time. By the time we got back, I had walked almost 3 miles, and my feet were aching. The strangest anxiety was making me crumble. I felt it all over and it made me feel insane. I wanted to scream but didn’t. I layed out the yoga mat, and asked Krishna to massage my feet. His presence was calming.  He instructed me to do some stretches on the mat. Every time I twisted or turned I felt like I would fall over. Finally the stretching and twisting soothed me. A few baby cobra postures, a few minor bends of my back. A long Savasana (corpse pose) in which one just lies on their back and breathes and does nothing. It troubled me to open my eyes and come back to a sitting position.

Dina who has been visiting me every few weeks, texted me last Friday, and asked if I was interested in coming to her apartment, along with her husband, Todd. Simply going anywhere causes anxiety now. But I wanted to go. This was an invitation. I don’t get invitations to go anywhere anymore, and I’ve been so bored sitting in my house. I wanted to experience something new, see where she lived, how she lived, see the things she surrounded herself with. So she and Todd picked me up, after they attended synagogue Shabbat morning. I was ready on time, and although my physical awkwardness made getting into the back seat of their car, and buckling the seatbelt hard, I was intrepid, doing it myself. Todd is 69 but is lithe and fit, and looks much younger.  One of three brothers, he’s the one who has good fortune – health, happiness, prosperity, love. The younger brother, who was an ordained minister, had a major stroke and uses  a wheelchair, can hardly speak and can’t write. The older brother has been having falls, and is also be in decline. I attribute Todd’s health and happiness to Dina, who is tall and beautiful at 52, and who he is obviously deeply in love with. He was married to someone else at age 19, and had two children, who are now in their late 40’s now. He divorced that wife and divorced that life. This is what may have saved him. He took the right path at the fork in the road. A professor of criminology, he met Dina who is around 17 years younger, and they had a daughter (who was my former student), who is now 18.  They traveled the world together. He converted to Judaism, Dina’s religion at birth . He told me he likes the rules and structure of Judaism. To me he represents what is the New Jew. Not the ever suffering Jew (in Yiddish – “shvair tzu zein a Yid”- translation “hard to be a Jew”). Not the gefilte fish eating, Hebrew wailing, woeful G-d fearing Jew that is synonymous with my youth. Not the pious yamalke (scullcap) men with their long payis (the hair that grows in front of one’s ear between one’s forehead and the area behind the ear) walking with their wives who wear a shaitel (a wig or half-wig worn by some Orthodox Jewish married women in order to conform with the requirement of Jewish law to cover their hair as part of modesty related dress), along with their 5-8 children. He’s a New Jew. These are the best kind. People who recreate themselves because they choose to follow the faith from a need inside themselves. They choose to learn about the ethics of our fathers. He chose Judaism. I was born into a Holocaust family. A huge difference. Make way for the new. The Buddhist brushes away the intricately formed sand mandala because nothing is permanent, and former Christians make the best New Jews. Clean slate.

Dina showed me their art collection and I went with her from room to room, snapping photos. They have traveled with their daughter to Africa and many remote parts of the world. They have enjoyed raising her. She is an untroubled specimen. Brilliant in mathematics, languages, academically gifted. She questions. A whole person. This is what a good marriage brings, a child who grows up to become an untroubled adult.

This is a sculpture of a reclining woman made by a female friend of Dina’s late mother.

A small seated bronze female figure by the same artist. Dina told me this her favorite piece.

A photo Dina took of an elephant with it’s child, when they traveled to South Africa.

A small elephant made out of cut pieces of Coca-cola and soda cans. This is typical of the recycled art made in South Africa of old tin cans and recycled products.

An assemblage made by their daughter when she was a child. Made from a soup ladle, a chop stick, a wash cloth, and a metal knitted scouring pad for hair (the same kind of scouring pads that my late father manufactured in his small shop in the Bronx when I was a child – I wrote about this last year).

An Egyptian painting of the goddess Isis on papyrus, hangs in their bedroom.

The views from the huge windows in their living room. One side looks out on Jersey City and faces West. The other side faces East, with views of Manhattan and the Hudson River. They will be moving to Montana in October. Their daughter will be going to university. I will miss them if I’m still around.

My former student, David, whose mural I pass on the regular route, did write back to me, and has offered to visit. I warned him about what to expect. I am different, quite different. I snapped the photo of the right side of the mural which shows the old Maxwell House coffee sign. When I moved to this city over 40 years ago, they were still roasting coffee every morning and the whole town smelled like coffee. Now there is a vast condo development on the footprint where the Maxwell House coffee plant stood. Ruth who was my friend for eight months, but ended out friendship abruptly, lives in one of the apartments in the complex. I was happy to be greeted by her and have a friend to visit. Glad I could still walk there. I walk around this city now and remember who I was. Memories of taking my kids to the parks. Meeting friends at the restaurants. Listening to bands who became famous at Maxwell’s, the music venue/bar restaurant where Nirvana, R.E.M. and Oasis played. Where I heard The Bongos and Yo Lo Tengo. Where Bruce Springsteen used the restaurant as a stand-in for a Jersey Shore bar for his Glory Days video shoot.

Impermanence and change are the hard facts of life.

Unless you’re a Buddhist and accept change as life’s only constant.

Portrait of my husband, February 2019

I read on Alzconnected (www.alzconnected.org), a post by a man that uses the avatar Crushed, that he thinks the person who has Alzheimer’s works to create a personality out of whatever fragments are left. He thought of the movie Apollo 13 and the efforts of the astronauts to create an emergency return system out of the bits and fragments of the spacecraft that still worked. He went on to say, the brain reconstructs itself, there is no conscious act from a person. He said there is no “Who”. He said it’s no different from the brain patching itself after a stroke. He said what made his wife who she was – was memory and personality, but there is a difference when you reconstruct something. Like George Washington’s axe with three new heads and four new handles. It’s not the same. He said he supports the person in there (his wife) since she has no one else.

I have to agree, even though I am not at the stage his wife is (she is 66 and has had Alz for 7 years and is in a memory care facility). She doesn’t recognize his daughters and says she thinks of him as a kind presence who brings her ice cream and cake). I still know my husband, and my children and I know my grandchildren who are babies. I know their names and am not forgetting people who are in my life, and former friends and colleagues who I saw everyday when I was still teaching. Yet I have changed and keep changing as this disease switches the lights in my brain on and off. I too am busy reconstructing what I hold onto of a shattered world.

On my walks I notice things. These are fragments. I piece together my experience by noting the things I see, and taking photographs. There are anonymous photos of people, places and objects. I am constructing meaning by making a visual diary of what I see. A car, a pink luminescent light in a window, children playing in the park. I categorize these images according to how they make me feel. Since I still have my memory and remember who I am and who I was and what I have done in my life, the photographs that have the most gravity for me are those that make me aware that my current life is now severed from my past life.

Walking with Theresa my companion, last Thursday

Theresa has taken care of many people with Alzheimer’s. She told me about Fred who was an illustrator, who was 68 when she started working with him. She said he had the disease for around 3 years when she met him, and in the beginning he would do the things I do – draw from photographs, read, do puzzles. She told me he lived 4 more years, gradually losing more and more ability. His wife ended up feeding him when he would make a mess trying to feed himself. When he became incontinent, unable to speak and bed bound she couldn’t take care of him and placed him in a nursing home where he died. She told me he could no longer swallow and his wife agreed to have a feeding tube installed. 4 years! Does this mean I will be around declining for 3 or 4 more years. End like that? NO. No feeding tube. I have a DNR and I would just want palliative care. Keep me as comfortable as possible and I will know when to let go.

Children in the park with their dad, with their miniature golf sets

Hoboken has become a highly gentrified community, mostly white, and there are young couples with kids, who make a lot of money. This photo tells the story of a dad who golfs and is teaching his young sons to golf. They have their own little golf club sets and a child sized golf cart. Maybe the dad’s a golf pro. Or maybe he’s just a dad who wants to share his favorite hobby with his sons.

A small terrace with a window/door emitting a luminescent pink light.

A mysterious pink light. Who lives there? What is their story?

A white Fiat photographed before turning the corner.

Rich people with disposable cash populate the town now. You can always tell by the cars.

I turn the corner and walk past the movie theater, past the posters advertising what is playing and upcoming movies. I see and take a photograph of the mural. I always see it when I get to the end of this block. The mural was created by my former student, David, who is now 31 and a working artist. I try and classify what he does. Is he a great artist or a great illustrator who paints murals? His style is versatile and I know that he captures the zeitgeist of this period in time. Painting murals developed from being a graffiti artist, who used spray paint on the sides of buildings. But his ability to render figures, faces, and architecture, realistically, made him tackle much more than a graffiti style. He is able to paint anything and his style is not derivative. The paintings are technically brilliant and he’s become an artist that wows his audience. David’s development as an artist makes me think of the development of the late James Rosenquist http://www.jamesrosenquiststudio.com/ who began as a billboard painter, and ended up capturing the zeitgeist of the 60’s in his enormous Pop art paintings. David’s work operates in that realm, encapsulating the complexity of what it means to be alive in the 21st century.

I know that my encouragement factored largely in his decision to pursue becoming an artist. I met him when he was 15 and it struck me as odd that he held a pencil with a clenched fist, the stem and point held in a power grasp. I’ve read that this is what a child does initially when coloring, and is considered an inefficient grasp. It’s what children under age 4 do when holding a crayon or pencil. It expends a lot of energy and supposedly the child can’t perform small precise movements. Between the ages of 4 1/2 and 6 the child is supposed to have a dynamic tripod grasp. This is where the writing or drawing tool is held by the thumb, index and middle finger, and the pencil is controlled with finger movement rather than the hand or arm. Yet David who never “learned” to hold a pencil or a drawing instrument this way, became an extremely skilled artist who draws and paints realistically and masterfully, and has painted murals all over the world. So much for the idea of the fisted grasp being an impediment to artistic development. As his teacher, I never tried to correct it. It was obvious that he had excellent fine motor skills despite holding writing and drawing instruments in a closed fist.

This is the mural he was commissioned to paint that I pass on my walking route. It depicts Dorothy McNeil, a prominent presence at Hoboken’s Club Zanzibar that showcased performances by popular African-American entertainers throughout the 1960s and 1970’s, and with camera in hand is the noted documentary photographer Dorothea Lange, who was born in Hoboken in 1895. And pitching a bat is Hoboken native Maria Pepe, the first girl to play Little League baseball, whose legacy is ending the ban on girls in Little League baseball.

David knows I have Alzheimer’s. Yet he has never reached out to me since the diagnosis. Before that he would come to my house and show me images of his work, and talk. I would go to his gallery shows and bought a painting which hangs in my living room. His girlfriend who was a very close friend to my daughter before I was diagnosed, is no longer in touch with my daughter or me either. I knew her for fifteen years and considered her a part of my family. She worked as my assistant the last year before I retired. By that time it was obvious that something was changing in me and that I needed help. I was so grateful for her assistance that year. As a high school student she studied sculpture with me. I recognized and encouraged her talent. I wrote numerous recommendation letters for her college applications, and she attended my alma mater Pratt Institute. She went on to study art therapy at New York University, and is now a practicing art therapist. She has worked with people who have dementia and understood the signs of my encroaching illness when it was in the early stages. She knows full well about my diagnosis, and in fact accompanied me to one of my neurologist appointments just after I was diagnosed. She witnessed the anxiety and confusion that the disease was causing me as I tried to continue to teach and hold down an active schedule. She spent hours talking with me and offering support. Then she stopped. She cut herself off from any further contact. She hasn’t been in touch with me since the summer of 2017. I send her my blog. Not sure if she reads it. I hope she does.

I am not nearly as physically mobile as I was when I last saw her. She would be saddened to see this. I am certainly much more affected by the disease physically now, perhaps even more than cognitively. My ability to function and get through each day is hampered by changes in mobility, sleep disruption, visual and perceptual changes and a s-l-o-w-i-n-g down.

But I push to keep walking and every very time I turn that corner and walk on that block, I see that mural that David created that honors Hoboken’s history. I think of both of them, these two students who I had a major impact on and who I always supported and helped, and were in turn so much a part of my life. I am proud of them and their accomplishments and their relationship. But I question – do they ever think about me now? Am I something that remains in their past, like a ghost? Have they erased me from their memory?

My friend Dina, who visits me every few weeks, and whose daughter was also my student, asked me if I wanted her to speak to any of my former colleagues about being in touch with me, and possibly visiting. I said yes, and she told me she spoke with a man  who teaches American history that I knew for 20 years  He  wrote me an email updating me about what was happening at the school, and noted how he was inviting a 90 year old Holocaust survivor who had been on the Kindertransport, to speak at History Day (He is aware of my Holocaust film work, that I’m a child of deceased survivors, and that I’d been an American Fulbright to Poland). There was no mention in his email that he knew about my diagnosis or that Dina had spoken or written to him.

I wrote him back and poured my heart out to him. I told him that my retirement was not something I wanted. I told him about my diagnosis. I said it was only because of this disease that I had to retire. I recalled the trip I organized in which we chaperoned 18 students to Greece to see the art and archeological sites. I reminded him that we saw the Acropolis together. I wrote how sad and strange it is that life can turn on a dime and how  Alzheimer’s has changed everything for me. I told him that I’m aware that the disease has a tremendous stigma. That it makes people afraid to reveal their diagnosis. I applauded him on his many achievements, and his wonderful relationship with his wife who also teaches at the school now. I asked him to write back to me. That the disease is so isolating. Then silence. No response. To this day there has been no further response from him.

I chastise myself for being so naive. Thinking I could be open about my diagnosis. Encouraging him to reach out to me. The lack of any response after I opened up to him,  makes me so sad. I took the risk, thinking he would sensitively write back and offer some sort of support. Offer his friendship. Some compassion. Offer to visit me. The school is only 3 blocks from my house. What was I thinking? Those 3 blocks might as well be an ocean away. Why am I persona non grata because I have Alzheimer’s?  Why is it so severely stigmatized?

I can’t effect the way people react to the news of my having this disease.

Happier days. 2008 as an American Fulbright to Poland.

The photograph above was taken at the American ambassador’s residence in Warsaw in 2008. The gap between then and now is eleven years but might as well be light years.

In sharing the diagnosis now, I thought I was humanizing the disease for others. Teaching. Showing that this can happen to anyone. That anyone can become helpless in the face of a neurodegenerative disease. That we plan our lives and think we are invincible. And then suddenly we are not. Maybe that’s what strikes fear. Showing how random fate can be.

I wanted to bring awareness to what is becoming the biggest health scourge of this post modern age. I didn’t want to hide. I wanted to show that the disease is not about forgetting everything. That I am not gone. I have changed but have not disappeared.

So, I’ve learned that compassion is not very high on people’s priority list. It does not matter if you’ve known the person for decades, worked with them, been their colleague or their friend. I’ve learned that the mere mention of the word Alzheimer’s makes people disengage. It’s the ultimate game changer. Most people would rather look away and not communicate. That’s what I’ve learned about the stigma of Alzheimer’s disease.

People with dementia have the same needs as everyone else for social interaction and engagement in meaningful activities. How can I maintain my self-esteem if writing openly about having this illness, and what it’s like to live with it, to someone I’ve known for decades, is met by stony silence? This is about social exclusion, being avoided and treated differently.

If you take a person, because they have Alzheimer’s, away from their job, their former life, all the people that used to interact with them, and leave them isolated with no access to their former lives, no friends, they are going to become extremely depressed. It strips one of motivation. It tells the person to fade away faster.

I think of Auguste Deter, the first patient Alois Alzheimer’s diagnosed after she died at age 55. When he met her, Dr. Alzheimer asked her many questions, and later asked again to see if she remembered. He told her to write her name. She tried to, but would forget the rest and repeat: “I have lost myself.” (German: “Ich habe mich verloren.”) He later put her in an isolation room for a while. When he released her, she would run out screaming, “I will not be cut. I do not cut myself.” This woman was locked in a room in isolation because he did not know what to do with her. Of course she went stark raving mad!

Dr. Alzheimer concluded that she had no sense of time or place. She could barely remember details of her life and frequently gave answers that had nothing to do with the question and were incoherent. Her moods changed rapidly between anxiety, mistrust, withdrawal and ‘whininess’. It was not the first time that Dr. Alzheimer had seen a complete degeneration of the psyche in patients, but previously the patients had been in their seventies. Ms. Deter piqued his curiosity because she was much younger. In the weeks following, he continued to question her and record her responses. She frequently responded, “Oh, God!”, and, “I have lost myself, so to say”. She seemed to be consciously aware of her helplessness. Alzheimer called it the “Disease of Forgetfulness”.

In actuality people diagnosed with younger onset Alzheimer’s are all different. Some do change rapidly, but most do not lose themselves all at once. There is a long period in which a person knows and is aware that their brain is changing. They have not forgotten.

I hoped that by being open about having this disease with my former colleagues, and my former students, acknowledging that, yes, I need support, I would be met with compassion and could in some way reintegrate some of the people I’d worked with, played with, who I spent so much time with, into my life again. In some meaningful way. With honesty and authenticity.

Can people with dementia remain a part of their community, when there is stigma?

Fear is what drives the wedge between inclusion and contempt. I posit that the person who has Alzheimer’s will reconstruct their personality based on how they are seen and treated.

My grandchildren, February 2019

Welcome to my world.

How to see the brighter side? How to appreciate my part in this old world? Doing what I can still do. Not much, but it’s my contribution to a world of better understanding. Writing and drawing, and sharing my perspective on living is what I do here.

I retain a sense of worth though I struggle with this disease. A sense of worth and a perverse sense of humor. All the while knowing where this is headed.

I ask to be remembered for the best parts. I take an accounting. I was a great teacher. I loved my students and loved teaching art and art history and making films. I taught these subjects for twenty years. I was a Holocaust scholar, and an American Fulbright to Poland where I shared my knowledge and my own family history. I was always an artist. I had friends. They are all gone now. My friends. My cousin who laughed hysterically with me over great food and wine. Joyce.  Jody. Kamila (who still writes sometimes from Poland). Karen, Frank, Amy, Ben. Harry! Where are you Harry? I would love to see your smiling face. I adored them all.

I love. I loved.

My husband.

Our children.

My friends.

I laughed.

I am a mother and grandmother.

Three delicious adorable babies.

Theirs will be a better world.

*****

Laura Nyro the late great singer wrote and sang, And When I Die.

PLEASE listen to this.

My body is slow to obey my commands. Telling myself to go faster when I can’t. The world around me an obstacle course.  Less than three years since diagnosis. I am a rapid progresser.

*****

An email friend who was diagnosed with Alzheimer’s in 2009 (slow progresser because that’s 10 years with this disease) writes me saying he has trouble finding the keys on his computer. He says he rehashes concepts. I have trouble thinking now! Where are my thoughts? Obliterated in a haze of confusion. I sometimes find myself looking at what I am doing, whether it is eating, or typing, or drawing, and forget what it is I am trying to do. Only by giving myself continual kicks in the proverbial butt do I get anything done at all. Crazy systems I call it. The clothes on the hanger the night before in order to get dressed the next day. Complete a drawing to indicate its time to write. The list I write every night before bed, to get through the tasks for the next day.  I do check off when I’ve taken the medications, eaten the banana, had the coffee, gotten dressed and groomed. Check, check, check. Having to do the same procedures over and over in order to remember what to do. To get through another day. Finally the day ends and my head hits the pillow, and with around five hours of sleep, I open my eyes, and it starts again. Rinse and repeat. Groundhog Day.

Each day it gets harder and anxiety looms large.

*****

So what is this better world? It’s a world without this disease. It’s the world of the future, I hope. One that I will not know, and that makes me sad. I’m a Baby Boomer who has Alzheimer’s disease, a disease with no cure, no treatment, no hope. A better world is one without this disease. Maybe a vaccine will be developed to eradicate it, as happened with polio.

A world without Alzheimer’s is a better world.

Greg, my email friend quotes Bugs Bunny, “Don’t take life too seriously. no one ever gets out alive”.

Sure, there’s no cure for death, but going like this is ridiculous! Losing my marbles before the game is over? In my sixties!!! And so fast. Yes it sucks, so my wish for the future is a better world where this disease does not exist. Where people don’t lose their minds before the game is over. Because too many people suffer. The ones with the disease and the ones who love and care for them.

*****

Many people who think of Alzheimer’s picture late stage, when a person can’t speak, walk or go to the bathroom themselves or do anything for themselves. Some who know very little about the disease (I was one of these before I came down with it) think that it’s about forgetting your keys or getting lost (this happens in the earlier stages). It’s a treacherous disease because it’s progressive, stealing abilities, thoughts, short-term and then long-term memory, physical abilities like taking a shower and getting dressed. Appetite goes, but one knows you have to eat and drink. But then chewing and swallowing food get harder. Emotionally it’s a roller coaster. I experience sheer terror, and have to calm myself many times a day, and especially at night. Some Alz people drop off the cliff early. I read about one man younger onset who was gone in 20 months. I find it hard to fathom that some progress slowly, as this has taken me down in less than three years, and I am still here and able to still do some things because I push myself. Routine keeps me going.

*****

The word dementia is an umbrella term that encompasses all the neurodegenerative brain diseases.  Wikipedia tells us dementia is a broad category of brain diseases that cause a long-term and often gradual decrease in the ability to think and remember that is great enough to affect a person’s daily functioning. Other common symptoms include emotional problems, difficulties with language, and a decrease in motivation. A person’s consciousness is usually not affected (that’s the rub, we are aware of what is happening to us). A dementia diagnosis requires a change from a person’s usual mental functioning and a greater decline than one would expect due to aging. These diseases also have a significant effect on a person’s caregivers.

*****

Everyone’s days are numbered, but in this disease there is no way of knowing how long it will last, and it would help to know for the sake of planning. I’ve arranged the Jewish funeral, and the plot. The wills have been drawn. Everything goes to my husband and kids. My husband is my power of attorney. I have a DNR. I do not want to be resuscitated. No heroic measures. When I am called home, please just let me go.

Some with younger onset go very fast. Three to five years. Some have nine to eleven years. Some hang in there for as long as fourteen years, (and I’ve heard twenty but that’s a stretch if it’s really Alzheimer’s) but in a completely demolished state, all their needs taken care of by others. Most of the disease is lived in the later stages. Dressed, spoon fed, diapered. Moved from the bed to the wheelchair by a hoist in the latest stage. Some go blind. I have days when I see double, and triple.

*****

I was diagnosed with probable Alzheimer’s disease twice. First in September 2016 at Columbia Presbyterian hospital in New York City through brain imaging called a Spect scan. It showed diminished blood flow to my temporal and parietal lobes. The neurologist James Noble, M.D. said he suspected my frontal lobe was already affected. Then a more sophisticated scan called an FDG Pet CT was ordered in February 2017 at NYU Pearl Barlow Center for Cognitive Neurology by Thomas Wiesniewski, M.D. which showed hypometabolism of my temporal and parietal lobes. Same pattern. The pattern of Alzheimer’s, a progressive neurodegenerative brain disease that is terminal.

It’s February 2019, two and half years since this saga began. The imaging was taken when I was already progressing, but not progressed to the point I am now. At that time getting dressed was not complicated. Taking showers was not something I complained about. I had stopped cooking and shopping, pretty much, but going to the supermarket or to a store was easy. I researched and read about the disease, thinking I could somehow handle it. I wanted to keep working, teaching. I still wanted to do and be all that I could be. Then as I tried to continue in my professional life, I saw that I was forgetting students names. I was not seeing things that were right in front of me. I was forgetting how to teach, having to write extensive notes for each step of a lesson, that I would refer to continuously while trying to teach. This was the beginning of the journey I am still on. It’s called The Forgetting, but as I progress in this strange and insidious disease, I have not forgotten those I love.

What would make a better world? A world without disease for one. A world without tragedy. A world without hatred. A world in which people truly accepted one another and took care of each other. We are a zillion miles from there and yet there is always hope.

*****

How about some irreverent humor?

Whew, finally some comic relief!

I saw a great film directed by Gus Van Sant called Don’t Worry, He Won’t Get Far on Foot. The star was Joaquin Phoenix, and it was about John Callahan,who became a quadriplegic in an auto accident at 21. The accident happened in his car after a day of drinking; his car was driven by a man with whom he had been bar hopping. Following the accident, he became a cartoonist, drawing by clutching a pen between his hands, having regained partial use of his upper body. His visual style was simple and rough, although still legible. His cartoons dealt with subjects often considered taboo, including disabilities and disease. He scoffed at the reactions of critics who labeled his work politically incorrect, while he delighted in the positive reactions he received from fans with disabilities. “My only compass for whether I’ve gone too far is the reaction I get from people in wheelchairs, or with hooks for hands.” Callahan said. “Like me, they are fed up with people who presume to speak for the disabled. All the pity and the patronizing. That’s what is truly detestable.”

I love that he could make fun of himself, and depicted people with disabilities in all their glorious decrepitude. The brutal honesty commingled with humor came from his brilliant mind. His work was heroic and profane, ugly but beautiful in its blatant honesty. His mind was not affected by his disability, his body and his life were altered, and he had the wisdom to use this to make a better world. Yes, through crude humor, humanized by its ability to speak the truth.

So I think about the man I saw with no legs begging for money next to the fashionably dressed woman waiting for the light to change so she could cross the street, oblivious to him. I think about it in a different way now. How would John Callahan have seen this scene?

We’re all in this stinking, beautiful, cruel world TOGETHER. Let’s learn from each other and give each other the opportunity to laugh out loud about how simultaneously hideous and beautiful it is.

Stitches——————

Trying to learn new things. Last week Theresa, who my husband hired as a part-time companion for me, taught me how to crochet. I didn’t think I could learn to do it, but remembered that Cecil, a man who I met on Dementia Mentors zoom chats, who has posterior cortical atrophy (a form of Alzheimer’s) learned to crochet and knit, and wears the hats he made for himself. It was really hard to learn and took all of my concentration. My fine motor skills and coordination are messed up, and manipulating the crochet needle, while holding the yarn around my pinky and index finger, and pushing the needle through the right hole in the continuous rows, was dizzying. Pulling the loops out so that I had room to pull the yarn through – and remembering to pull the yarn through the first loop, bring it up and wrap the end of the needle again, and pull the yarn through two loops, and keep it going, took a great deal of attention and dexterity. Theresa took these photos of my efforts.

At the end of each row, Theresa showed me how to turn the needle and tie the end, so I could continue to produce another row.

My friend Jackie, who is the chairperson of Dementia Action Alliance, refers to my writing and artwork and the way I weave my story, as a tapestry. I’m sewing, crocheting, and stitch by stitch, the story emerges.

Stitch by stitch. Fragments pieced together.

Weaving my way through the maze.