Disarray

Disarray (drawing for blog post)

Disarray (July 2020)

The disease has progressed a lot. That is what has happened and is why I haven’t been writing. This drawing is a visual representation of what it feels like now. I call it Disarray. Everything in the drawing is up in the air, and the connections between things are tenuous. I want people to know that for me Alzheimer’s has nothing to with forgetting who your children are, or the names of your grandchildren. You can be in the later stages and still remember their names. It is forgetting who you’ve been all your life. What makes you “you”. It is rapid aging and disintegration. It is the brain telling you that you are not here anymore. And yet you are here. It is confusion. It is panic when alone and not able to just get up, get dressed and start the day. It is an inability to start, and once I do, not know how to continue and the need to get up and pace around. It is everything as an obstacle – the cacophony of being outside and walking with my husband and not being able to filter sound, walking under the viaduct where a restaurant has set up tables with social distancing for dining outside during Co-vid, and the voices of the people dining, sounding like a din of loud noise that is so mixed and loud it becomes unbearable to hear. It is memories intruding on consciousness. Old memories, fragments. It is incomplete thoughts. A fragmentation of the self.

I’ll try and explain how this drawing is representative of my now. I started it with the images of the bananas. When I was an undergraduate art student, I was known as an excellent printmaker, and an artist and professor, Bruce Parsons, hired me to be the master printer for a series of etchings (intaglio prints) for an idea he had. He had returned from a sabbatical where he traveled to Africa, and learned about a tribe that did not refer to people by gender, but instead thought of people as ripe and raw. The series was called that – Ripe and Raw. The bananas were photographed on a cutting board. In the middle were the yellow ones. The time in life when you’re living your life as an adult. The green banana was placed to left of the yellow ones. It represented the beginning of life. The baby. The time when you’re not ready, when you need to be nurtured to become who you are meant to be. But life is short and before you know it you are old. After you are ripe, you become over ripe. Old age is that black banana. No longer ripe. Dare I say rotten.

The drawing contains a baby bottle with green liquid inside. I made a drawing of a baby bottle sitting on a chair when my son was a baby that I called radioactive baby bottle. In that drawing I placed it inside my bedroom and drew the rest of the room in perspective. Here it’s up in the air, and placed between a self portrait that is in pencil – not colored. The self portrait has lines on my forehead that represent bricks. I am a ghost in this drawing. A phantom presence experiencing the disarray of a luridly colored place where nothing makes sense. There are light bulbs hanging down on cords illuminating this catastrophe. A big head with an eye looks directly into a light bulb. The eye is blood shot but doesn’t really see. It is looking, an eye above a big swollen cheek. There is an anatomical heart, that has a truncated pulmonary artery and an aorta that branches out, weaving through books. Books that are floating in space. Closed books that are silent. Emblems of all the information and stories I no longer can read. There is a cactus, a forbidding plant with spikes. I included a drawing of the blue shoes I wear when I walk outside with my husband. The shoes with laces that I tie, narrating each step as I tie them. “Pull the laces tight, tie, loop the lace around and tie the bow, and double knot”. The shoes that allow me to keep walking, to take the walks with my husband on the route we take.

The couch sits under a light bulb. This is a drawing of the couch I sit in everyday, with a dent because I sit so much. The couch from which I watch television. Episodic series after episodic series, ad nauseum. The couch where I fall asleep with the ear buds still in my ears, waking to see that the television is still on.

Nadir

Suddenly Mad- Nadir (drawing of Wayne)Portrait of Wayne

Yes, I’m still here. It’s May and I know I haven’t posted anything since the end of March. My ability to write is still intact though I see that I ramble. My ability to move around and walk is impaired. My balance is way off, and I often feel like I’m going to fall when I turn around. Chewing and swallowing is now very hard to do especially foods that are dense. I still remember how to draw and take photographs, although I’ve been doing that less and less.

Everything has changed. Now Theresa is gone because the Coronavirus has forced everyone into isolation. She was concerned she might bring the virus here. I haven’t seen her since the end of March. She still texts me occasionally and I text her back.

My husband hasn’t been going to work. The company produces trade show exhibits for the pharmaceutical industry, and has furloughed two thirds of it’s workers. There are no trade shows scheduled anytime in the foreseeable  future. At first I think he was in shock. He went from working nine hours a day, crunching numbers, in contact with the designers and sales department to no work at all. He has now been taking care of our house, painting the main hallway, making sure the house is maintained. He takes care of me, does all the cooking and shopping, and makes sure to take me out every day for a walk (except when it’s raining). He holds my arm when we walk, navigating us both on the street where some people don’t wear masks, moving us into the bike lane when people go by who are oblivious to keeping a distance.

I didn’t write in April so I’ll go backwards and remember the highlights of our life in isolation. Wayne prepared Passover seders for both of us and we read from the Haggadah on both nights. I was able to teach him how to make choroset, which symbolizes the mortar the Hebrews needed to work during their enslavement. We ground the walnuts in the Cuisinart, and shredded an apple, mixing them together with a little honey and added a little red wine. This makes a paste that is spread on matzoh and eaten like a sandwich. It’s a recipe my late father taught me. My wonderful synagogue delivered seder boxes with chicken and potato kugel and pickled salad. Wayne made a chicken and matzo ball soup. We ate gefilte fish too. All the trappings of a Pesach seder. We texted with our kids and sent photos. Caarin, my niece, gave our daughter Mimi her matzoh ball recipe and Mimi sent photos of her success making them. On the second night rabbi Scheinberg conducted a seder online via Zoom and read from the Haggadah, taking turns with some of the zoom attendees. At that point we didn’t know what was happening with his company, and I guess we hoped that he would still be able to continue working.

Then out of the blue, my dementia mentor, wrote me an email that she would no longer hold weekly meeting with me. She wrote that over the past three years she has become more of a therapist than a mentor and that her role is to mentor and help me learn ways to work around my dementia. She wrote she has listened rather than help me. I was stunned. After three years I felt we had formed a relationship and that we were friends. Zoom chat friends. I’m still reeling from this.

I still zoom chat with Jackie Pinkowitz, the chair of Dementia Action Alliance. She isn’t fazed by my lamentations. She knows that I push myself and that I am not a quitter. She offers encouragement. Encouragement is key. And I have zoom chats with Tim who was diagnosed with Lewy bodies. He told me I am too hard on myself. Said I need to be kinder to myself. Jackie has said that to me as well.

It’s just that this illness has taken away so much of me; my resilience, my strength and sadly my faith. I used to feel like G-d was protecting me and my family. I didn’t fear. I was tough. A fighter. Confident that if things didn’t work out one way, I’d find another way. Now the simplest things are so hard for me to do. Everything is off. Out of sync. And I am full of fear. That’s because this disease is treacherous. It takes and takes. piece by piece.

Suddenly Mad- Nadir (sx70 photo from when I was young)

When I was young I would never have believed that I would develop Early Onset Alzheimer’s. I thought I’d live to a ripe old age with all my marbles. I imagined myself near the end of my life in Tangiers walking along the shore on the Mediterranean sea, holding hands with my husband. I can picture it but I will never live to see it.

I didn’t know that depression is related to Alzheimer’s until I read about this after I was diagnosed. I had recurrent major depression as an adult. I went on antidepressant medications when I was in my forties and always experienced side effects. Yet they were helpful and stabilized my mood swings for many years. I had no idea though that the medications I was put on were anticholinergics and that they kill brain cells. Anticholinergic medications are now found to contribute to brain inflammation, a potential contributor to dementia.

The first neurologist that diagnosed me with Alzheimer’s (September 2016), said that my depression was not primary but neurological. I surmise that my recurrent depressions that started almost twenty years ago were the descent to dementia, the beginning of this illness.

I keep trying to write, to make sense of this but I can’t. How can I understand why my legs are becoming weak and wobbly? Why I am always wondering and asking my husband, “what’s next to do”? Why I hear my self babbling incoherently as soon as I wake up?  I want to still be here, but the me I used to be, the person who I used to know is disappearing. The person I was is gone now, replaced by an alien being. Everything seems hyperreal. Birds look like tiny dinosaurs. Plants and trees and flowers all look like creations from another world. Colors are so intense that they look almost artificial.

Nadir means the lowest point in a persons fortune. It’s a word I learned when doing a crossword puzzle and indeed describes my dilemma. I don’t want to be this burden I have become. I know where this disease goes and I am progressing faster now. I am aware of how distorted my brain has become. I am aware of how I feel, and how depression which I fought has turned into apathy in Alzheimer’s. I am cognizant of how hard it is to keep pushing myself. Yet that is what I do.

Old memories come out no where. Usually they are snippets of my childhood. My obsession with television, the black and white console in my parents living room. Sneaking in to watch movies late at night after my parents went to bed. My father tried to get me to stop doing this, and took a fuse out of the fuse box. I remember feeling for the fuse and accidentally sticking my finger in the hole that was supposed to hold the fuse. He tried to stop my late night television watching by taking a tube out of the television. I took a screwdriver and unscrewed the masonite backing behind the tv, and somehow figured out how to get the tubes back in, and made the television work. I was smart and sneaky.

I remember the movie The Incredible Shrinking Man written by Richard Matheson . I watched it on tv when I was a child and it had a lasting impact on me. It tells the story of a man who is exposed to a radioactive pesticide cloud and starts to shrink. First he shrinks a few inches but after a while he is three feet tall. His condition becomes known to the public. when he learns there is no cure for his condition, he lashes out at his wife. he shrinks to the point he can fit inside a dollhouse, and has a battle with the family cat, which leaves him alone and lost in his basement. he continues to shrink to smaller than average insect. Towards the end of the movie he fights off a gigantic spider for a piece of cheese. He accepts his fate and is resigned to the adventure of seeing what awaits him in even smaller realms.

He speaks his final words, ” I had conquered. I had won. I lived. But even as I approached the dry flaking crumb of nourishment, it was as if my body had ceased to exist. There was no hunger. No longer the the terrible fear of shrinking. Again I had the sensation of instinct. of each movement, each thought tuned to some great directing force. I was continuing to shrink, to become…What? The infinitesimal? What was I? Still a human being? Or was I the man of the future? So close the infinitesimal and the infinite. Suddenly I knew they were really two ends of the same concept. The unbelievably small and the unbelievably vast eventually meet, like the closing of a gigantic circle. I looked up, as if somehow I could grasp the heavens, worlds beyond number. G-d’s silver tapestry spread across the night. And in that moment I knew the answer to the riddle of the infinite. I had thought in terms of Man’s own limited dimension. I had presumed upon Nature that existence begins and ends in Man’s conception, not Nature’s. I felt my body dwindling, melting, becoming nothing. My fears melted away and in their place came acceptance. all this vast majesty of creation, it had to mean something. And then I meant something too”.

He knows he will shrink to eventually atomic size. No matter how small he becomes, he concludes that he will still matter in the universe because to G-d there is no zero.

He says, “I still exist”.

I think I am remembering this movie now because this is an analogy for what I am going through. My brain is shrinking. I am changing. I am disappearing, I am looking for justification for why this happening to me.

Suddenly Mad- Nadir (Mimi and Dan visit)My daughter and her boyfriend visited us just to take a walk together. They didn’t come into our home because of the Coronavirus. My husband usually holds my arm and helps me walk, but in order to walk beside my daughter (six feet apart), I had to walk by myself. My husband helped me cross the streets, and then my daughter switched with him and walked with me.

Obviously I have progressed in this disease. I need help getting through each day. There are so many things that I can no longer do. My strength and ability to navigate through the world is severely compromised. Expressing myself is often very hard to do. Sometimes I just point, and my husband seems to understand. It’s so frustrating losing words. I was a writer. I loved words. I loved stories. I loved movies. Now I narrate in texts to my daughter, sending her my daily selfie, telling her that I am finally dressed and ready, telling her about what is on the calendar for the day – do a laundry, what the date is, that her dad has just taken me for a walk, that when I returned the door to the dryer was open and the clothes I thought were drying were still wet. How I turned the dryer on again to dry my clothes. She wrote back “What a fabulous story. Thank you.” I see the humor in it and I see the tragedy too.

I don’t know how to end this, so I’ll end with a rainbow and some drawings of the people I’ve loved and some of the friends who’ve stood by me.

Suddenly Mad- drawing of Mimi (my kids are my legacy)

Suddenly Mad- drawing of my husband WayneSuddenly Mad- Drawing of Soren (my kids are my legacy)

Suddenly Mad- Nadir (a rainbow)

Coronavirus, Alzheimer’s and me.

Suddenly Mad- portrait of TheresaPortrait of Theresa

So much has happened over the past month with the invasion of the Coronavirus pandemic. Numbers elude me, though I read the New York Times and listen to the news. Hundreds of thousands affected globally, now close to a half million. Almost twenty thousand have died.

New York City, where I was born, and the city I always considered home, even though I lived a stones throw away across the Hudson River, is now the epicenter of the virus in the U.S.  The streets of New York City, the most vibrant, lively, nuanced, most multicultural city in the world, is now an eerie largely deserted place.

I’ve been sick with Alzheimer’s for a long time now. I was forced to retire from teaching a year after the diagnosis in 2016, but I know that I was ill a year before that. There were signs. This disease is treacherous. Early on it manifested as recurrent depression and anxiety, but now after four plus years, I have many motor signs, a lot of difficulty walking any distance, and my steps could be described as short and shuffling. I no longer go outside on my own, always accompanied by my husband or my companion, Theresa.  My language, or ability to speak sounds odd, like I am a robotic child is one way to describe it. I can make myself understood, but my sentences are often mixed up, poorly arranged, and I spit them out quickly to communicate a need, a thought, before it disappears. Giving myself directions out loud is the norm. Repetition and stuttering, beyond my control. I wake up to this alien who starts speaking Alzheimers. Babbling. Incoherent words that make absolutely no sense. I often wake with the thought, “oh no, I’m still here”. Another day to battle this, with the realization that every day it gets harder.

Hoboken, my small city, a metro hub of Manhattan, where I’ve lived  for forty three years, is now on self isolation meaning shelter in place due to the Coronavirus pandemic. People are advised to stay home and self isolate as much as possible. This is much like what my life has been like for the last few years anyway, but now the few friends I have who would visit and sometimes walk with me in the park, are also in self isolation. My already small world has shrunk.

My husband who had been driving to Connecticut three days a week and working remotely the other two, is now working remotely five days a week. I marvel at how he manages to do everything, the food shopping, cooking, paying bills, working on his computer, and helping me get out of bed, keeping me focused on starting my day, managing my recurrent panic and anxiety, as I beseech him to stay in the room or nearby as I get dressed. He listens to me babble, encourages me to walk, get off the damn couch, and move my body. He’s acutely aware of how declined I have become. It’s a very sad situation.

We still go for walks, the same boring route to the viaduct and back, because this is what I am familiar with, and the streets are wide enough to accommodate both of us. 1.8 miles is as much as I can handle. I run out of steam very easily. Not just physically but cognitively. My brain can’t handle too much now, which is why writing is frustrating and slow. I know what I feel, I have a sense of what I want to say, but the words are stymied. I start to type and the word is misspelled. I correct it and then forget what I wanted to say.

When I go for walks now, either with my husband or Theresa, there are now more parents tending to their little children on the street. Hoboken is on shelter in place, but you can’t keep little kids in the house all day. The playgrounds are closed but the parks are open. I look ahead of me and see a little kid riding a bike or a scooter coming towards us and I ask Theresa or my husband, “what should we do?”. My reflexes are slow, and I wobble and veer to the right and left. “Let’s cross the street”, Theresa says as she takes my arm. Then she suggests we cross again, and I turn with her, step gingerly off the curb and hobble across the cobblestones. Stepping up to the sidewalk level again, a span of about five inches, feels like conquest.

My husband joked that he should carry a tape measure to show people what keeping six feet apart looks like. He’s vulnerable to this virus, not only because he’s over 65, but also because he had surgery on a lung twenty seven years ago for spontaneous pneumothorax, and unfortunately he smoked for many decades. We are both vulnerable. Yet thankfully he remains pretty strong and healthy. He’s always been a walker and a hiker, and he goes out many times a day, now keeping a safe distance away from others. Since he is now working remotely five days a week, he can’t pay that much attention to me, and so Theresa who started to work for us over a year ago as my companion and aide, is still on board. She has witnessed the ravages of Alzheimer’s as it continues to strip me of strength, my balance and my executive function. I was a strong woman before I succumbed to this illness, and though I have honestly not wanted to live anymore, my body and spirit and faith have pushed me to hold on. Theresa has helped me to manage a modicum of routine on the two afternoons she comes here. We go for walks in an effort to keep me mobile, we share stories about our families, she has taught me to crochet, she cleans my kitchen and bathrooms, she vacuums the carpets, helps me do the laundry and makes my bed. Doesn’t sound like much, but her presence has been an important part of my life.

I’ve learned from her.

Last July, her daughter Michelle died in her sleep at the age of 37. Michelle had led a difficult life. There had been drug addiction and bad relationships. Though she was a college graduate she had no clear cut goals. Over the years, Theresa tried to help her, brought her to therapists, but recently told me she didn’t think Michelle wanted to live, found it too hard.

How anyone gets over the death of a child is beyond me, but Theresa has managed to carry on. She began grief counseling and little by little, she resumed her life. Then her brother, Thomas, was diagnosed with pancreatic cancer at the age of 63. That was two months ago. After five weeks of chemotherapy, his body failed him, and he died over a week ago. Just like that. Gone.

Theresa’s presence has taught me that while life is complex, unbalanced and unfair and often tragic, love is the glue. She practices acceptance. Her faith is strong and bound by her determination to serve. She continues to put one foot in front of the other, relishes in the love of her grandchildren and accepts each of her four remaining children, three daughters and a son, for who they are.

Love. I feel this so strongly now when my husband comes into the bedroom in the morning asking me if I want to get up. Do I need any help? He smiles. He beams when I smile back at him and tell him how much I love him. How much I appreciate everything he is doing. We’ve been dealt the tragic blow, and yet love remains. In fact it has grown. Sure, I miss our passion, sleeping together, making love, and falling asleep spent in each others arms. The trips we use to take. Hiking with our kids in the Southwest. Visiting our late parents in Florida. Swimming in the ocean. Laughing. He always made me laugh. And still does sometimes. He is the one now who encourages me to be honest, to write about what the experience of having this disease is really like for me. The difficulty. The confusion. The sadness. Time slipping away. One day after another, each a little harder for me than the last. Yet I believe because we have known love we will not forget.

Suddenly Mad- Last program at Lincoln Center Moments

ISOLATION

New York is on lockdown. The programs I was still able to attend are now closed. No more trips to the Rubin Museum. No more excursions to Lincoln Center.

This is a photo from Lincoln Center Moments. It was the last time I went to New York with Jeanne. It was a great ensemble that played jazz renditions of Broadway tunes. So in Love. I Got Rhythm. My Favorite Things. Summertime.

Now my friend Jeanne, who is 78, and who would come every Wednesday to play Scrabble with me, and bring a meal, is no longer playing Scrabble with me or visiting. Last week she dropped off a meal and stood behind the glass door in my vestibule and waved to me. The people who would visit me and keep me conversant, which is important in fighting this disease, are no longer visiting. Razel introduced me to an African game called Mancalla. Then she got a bad cold and then Coronavirus invaded. I haven’t heard from her in weeks. Our daughter and her boyfriend left their Manhattan apartment and are staying at his parents home in Long Island. My daughter used to come here every few weeks, we’d have dinner together and she’d tell me about her world travels for the TV show she has been producing. Now the company that produces the show has “paused” her work as non essential until she is able to work with her team again, travel and shoot more film. Manhattan is a ghost town and she escaped. It wouldn’t have worked for her to come here. I hardly sleep and she wouldn’t have had the patience to deal with me. So it’s better this way, but I haven’t seen her in many weeks, and really have no idea when I’ll be able to see her again. I text her every day, and she texts back, so we’re in contact, but I miss her. I wouldn’t have wanted to usurp her life the way my late mother in law did when her daughter took care of her for the last five years of her life, only regaining herself back after her mom’s death. But I’m still a mom and even a text, an email shared of an essay my daughter wrote for the film festival she produces, is appreciated. At least I know she is safe and well. I can’t visit my son or see my delightful grand-babies. He sends photos of them. The last was a picture of Michael standing on a stool which he had carried over to the piano by himself. He and his wife are both working remotely. He is a lawyer for a famous racing car company in Italy. Will that company survive? I worry.  He says they still need a lawyer in the US to handle their business. But what is the business is no longer? They have three children, twin babies and a four year old and a mortgage. I haven’t seen them in many weeks. I wonder when I will ever get to see them again.

Isolation is hard for everyone during this plague but Isolation is bad for Alzheimer’s in a different way. I am in a state of decline. For me it was a victory when I was able to get dressed and ready and get into the car for the drive to my son’s house. I would sit with Ellie and read to her. I could lift the twins and hug them. I was watching them grow and develop. I got to see them go from crawling to walking to playing with each other. Will I get to hear them speak when they start to talk? Will they know who I am? Will I still be able to read to them, lift them and put my arms around them?

I still go for walks with my husband and with Theresa, but the shrinking of my life is profound. I am lonely and tired of this life. I wish for a healed world and happiness for my husband, for him to be free of this burden of care for me. I want him to love again, to experience life again without all this sadness. He deserves a better life and I pray for him, I pray for my son and his family. I pray for strength and happiness for my daughter.

As for me, I know that the future holds no promise. It is their future I am concerned with.

For me it’s always the present, hanging on to the present, until the present is no more.

As for me, I hope my passing is swift, because I do not want to become more of a burden. Forgive me my transgressions, those who feel I have hurt them. I did not know you mattered so much. Now I don’t matter very much. It hurts to be discarded because of a disease. It hurts to be facing the end and know it. I would have preferred it to be swift and poof, it’s over.

A stillness is coming. The gift of going in my sleep would be appreciated.

 

Nobody really owns anything…but we still love to shop

Suddenly Mad- Nobody really owns anything...but we still love to shop (drawing)

Nobody Really Owns anything But we still Love To Shop, is the last drawing I made before early onset Alzheimer’s came on suddenly, spontaneously and has progressed quickly. It’s different from all the drawings I have made since then. Witty and urbane, it illustrates the way I used to think. It contains a message I still believe is true. This material world is not fully real. Everything is illusory. We plan, we attain things, we hunger for adventure, we strive for security and we want stuff. Life is desire. We want. We seek. We shop. And then it all disappears. The tipping point. In an instant it all disappears. Whether you are Rupert Murdoch, Warren Buffet, Jeff Bezos, Bill Gates… a billionaire or pauper, or anyone in between, it’s all going to disappear, because as we all know you can’t take it with you in the end.

That dress I bought from Barney’s, reduced from $2,000. to $50. was such a bargain. Seems like yesterday I was eagerly shopping at Barney’s on Broadway, picking my way through the sale rack. Now Barney’s is in bankruptcy. What’s that dress worth now sitting in the closet. 10 cents or less?

The pretty young woman in the mirror is no more. Her face is lined and there are bags under her eyes. The shiny dark hair has turned gray and is thinning. Who is she now? Is she the same person? The sturdy, handsome young man, his muscles bulging out of his tee shirt, his dazzling smile and gleaming eyes. Where is that boy? He lays in his hospital bed, his formerly bellowing voice now reduced to a whisper. “I love you”, he mews. “I am still your hero. Aren’t I?”

Everything changes. Morphs, declines and disappears. While we are here we tell the story. While we are here we are the story.

Suddenly Mad- ShopRite produce aisle

I no longer go shopping as I used to. I was that mom and wife who filled the refrigerator with all kinds of goodies, good food and staples. I shlepped and unloaded the packages. I filled the cupboards. I was an excellent cook. My family sat down for dinner together every night. Sometimes my husband was grumpy and tired after a hard day at work. Sometimes the kids fought or teased each other. Sometimes I felt like a drudge. Usually I felt thankful that I had two healthy kids who were smart and capable, a handsome able bodied husband who loved us. These are normal feelings. Life was not easy but we made a warm comfortable home and everyone was thriving. We were a two income family. I worked, I shopped, I cooked, took care of our kids, made sure everyone had clean clothes, shirts were ironed, the carpets were vacuumed, the surfaces dusted and gleaming. We took vacations, sent the kids to camp, threw dinner parties, went to concerts and movies, went out with friends and family. The kids went to good schools. I made films, learned screenwriting, studied art history, wrote lesson plans, mentored students. There were financial problems, emotional meltdowns, health crisis, but nothing seemed insurmountable. I was strong. Then. Ambitious. Always looked forward.

As the saying goes, “Life is what happens to you while you’re busy making other plans”.

I dreamt I was shopping at a large gourmet store that resembled Gourmet Garage or a huge Whole Foods in New York. I was with my husband and daughter, but they were in another part of the store. I stood in front of a display of flowers holding my shopping basket, thinking. In my mind I was designing a shopping basket retrofitted with a built in plastic vase in the corner. This was to be filled with water, so that the stems of flowers would stay wet until purchase. I felt like the old me in the dream. Just shopping and thinking.

In my reality now, a trip to the supermarket is a very big deal. An excursion. My husband will tell me I need the exercise, and after getting my shoes on and concentrating hard as I tie  the laces, after putting on my eyeglasses, then struggling to get my coat on, off we go to Shoprite to buy some fruits and vegetables, yogurt and my favorite, ice cream. My husband directs me now as he selects the items. He says “stand here”, and I obediently do just that. We’re both concerned that if I veer away from him, we might get separated and I might start to panic. He holds my arm directing me through the aisles. People pushing shopping carts crisscross and almost bump as they make their way around the busy store. To me this feels like an obstacle course. The lights are so bright and everyone is on their individual mission to fill their carts with food. The cases are filled with so many items. The savage looking meat aisle. The acrid smell from the aisle with cleansers wafts up my nose. There is an intensity to the experience of being there. I look down. He directs me to turn. I turn the wrong way, kind of frozen in space, like a deer caught in the headlights, and I end up facing in the wrong direction. He asks, “what are you doing?” I say, “I don’t know…waiting for you”. He grabs my arm and says, “straight ahead”, and we head to the dairy aisle. Then he says, “I think we have everything”, and we walk over to the scanners that read the bar codes on every item with a laser beam light that translates the binary codes into a coinciding price. He shows me how to properly hold the bar code up to the light and then I place each item on the conveyer belt. He packs the items into two bags, one for most of the items and a lighter one for me to carry. He wants me to feel useful. Even though it is more than likely a hassle for him to have to patiently wait for me to do each thing slowly, he is trying to not do every single thing for me.

A trip to the supermarket is now our date night. The inordinate patience required by the the caregiver spouse of his wife who has dementia is exhausting. Shall we call this love in the age of Alzheimer’s? Or would you call this assisted living?

Suddenly Mad- Drawing of JuliePortrait of Julie

Julie is my friend who lives in Alabama, that I’ve never met in person. We met on the Alzconnected forums when I emailed her a link to my blog. We text each other, and have been offering each other support for many months. I’d spoken to her on the phone once a little over a year ago. She was diagnosed with possible Frontotemporal Lobar degeneration by one neurologist, but another doctor thinks it is Lewy Bodies. I suspect it’s a form of Semantic dementia. She is five years younger than me. At sixty, the disease has caused her aphasia  and she has written to me that it is increasingly harder for her to find the words to speak. I understand this as I stammer in search of words to express myself, searching through my rapidly depleting memory bank and coming up with blanks. We are from wildly different backgrounds. She’s a Christian, a Southerner who grew up as an army brat, the child of a high official, and lived all over the world. It is apparent to me that her devout faith is what eases the burden of becoming so ill in young middle age. She’s also a mom and a grandmother. I asked her if she reads the bible and she wrote yes, but not like she used to. Then she asked me if I did. I reminded her that I was born a Jew and she asked if I have faith. My answer was that I question. She wrote (verbatim), “That’s good. Keep question. Maybe you get answers. Many never even bother even question”.

Julie wrote that she does not go into the Walmart her husband drives them to. She stays in their vehicle with her dogs, and has sent me smiling selfies as she sits in her car with her dogs as she eats chocolate from a miniature Whitman’s sampler. She loves to go with her husband for these drives, but finds the experience of going inside the store causes her too much anxiety. Her way of protecting herself is to withdraw, and find her comfort zone. When she’s not with her husband, the dogs and a cat are her companions. In the time we’ve been texting her brother has visited her, and her best friend from college drove down from Pennsylvania and stayed a few days. Since I’ve never met her in person, I can’t really say I know her. I know her from the composite of words and photos that she has shared. I know that she strives to be okay with her illness, to choose acceptance, and to take care of herself as well she can. I know she was a college athlete and a swimmer. She still stretches and exercises some days. She doesn’t like it when I complain. She concurs that she too suffers, but tells me she is trying to be happy. I know some days are really tough for her. If I had just one word to describe Julie, it would be stoic. The stoic philosopher Epictetus wrote, “when alone call it peace and liberty, and consider yourself the gods’ equal. When in a crowd, think of yourself as a guest at an enormous party, and celebrate the best you can”.

I learn from her, despite my regression, bemoaning my fate with the tendency to dwell on the dark side.

When I wrote her “I want this to be over already”. She texted these words-

“I know. Don’t stay there. Somehow have to change your view. Look less loss. More moving on…Still much to learn here.”

 

Suddenly Mad- drawing of Mimi (my kids are my legacy)Portrait of Mimi

 

Suddenly Mad- Drawing of Soren (my kids are my legacy)Portrait of Soren

 

Suddenly Mad- drawing of my husband WaynePortrait of Wayne

These are drawings of the ones who are implicitly tied to me (for better or worse). My loved ones. My adult children and my husband. The people I love. The people who are hurting because everything changed as a result of this “long goodbye” of mine.

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People

I have hundreds of photographs saved in my iPhone. They are a visual history of what has transpired since I became ill. As I scan through them, I see all the people who were a part of my life over the past almost four years, the years of the acute trajectory of this illness. For the most part these people have disappeared. The visitors I call them. Two years ago there were the young mothers, who would stop in with their little kids. That was sweet while it lasted. They’d tell me about themselves and how they came to be sitting in my living room. A few had had a relative who had Alzheimer’s and was now gone. I became someone who people would divulge their life stories to. My living room became a sort of confessional. I thought about those who refused to come near me. I came to realize how tainted I’d become. Maybe people thought they’d catch it to.

Jeanne has been the only one who has stayed since I told her about my diagnosis in September 2017. Jeanne, an unusual woman, 12 years my senior. My Scrabble partner who brings me muffins and dinner every Wednesday, who has escorted me to Lincoln Center Moments and the Metropolitan Museum program for people with dementia.

There are the zoom chats with people with various forms of early dementia. Most of them are still highly functional, living lives with purpose, advocating, traveling. My life is now a far cry from that, and when I describe to them how my symptoms have progressed, they look puzzled.

Jackie, the chair of Dementia Action Alliance has been a big support with weekly zoom chats. She encourages me to keep writing this blog.

Laurie, my dementia mentor, has stuck by me with weekly zoom chats for the last three years. She has not progressed quickly as I have. That is not to say she doesn’t also have symptoms. She does. Sometimes I feel remorseful. Why have I progressed so fast? Then I think about those who are no longer here. Susan Suchan who I met on a zoom chat, who so valiantly battled Primary Progressive Aphasia and cancer, and was only 60 when she died. Or Susie Bishop, a super talented film producer, who I never met, but read about her diagnosis of early onset Alzheimer’s at age 54. She died four months ago at age 59. I know for some this is a five year disease. Pat Summit, the great basketball couch, diagnosed at 59 and gone at age 64. So while I know where this goes, I am still here writing. Battling this monster. Learning to swat away the anger.. Ending the day with sadness, yes, but a smile as well. Learning.

Caarin, my niece, found me in August, boldly coming to my door. My niece who has never met her birth mother, my sister. My sister who has not seen me since before I became ill. Caarin, who knows the work of all the artists, contemporary, modern, ancient…the architects, the writers, the musicians…I used to admire and study. I wondered how that could be. How it is that she loves the illustrations of Maira Kalman, the illustrator who influenced the drawings I made before I became ill. Caarin came today and we went for the walk on the route I try to take every day. Afterwards she took out her knitting needles and yarn, and showed me how to knit a simple stitch, and then several rows of stitches in a red and pink yarn, the color of which I would have selected in a sweater when I used to shop. There is something interesting about this. There is this law of attraction that resides within us that may be part genetic, part cultural, that supersedes this illness. I am grateful for her. She brings light to the end of this tunnel.

 

Suddenly Mad- Maira Kalman illustration (The Sun Will Explode Five Billion Years From Now...Set your watches...That really changes Everything...Doesn’t it?)

SPIRAL2020_LifeInterrupted – My article for Rubin museum Spiral magazine

Poof! It’s 2020

Suddenly Mad- Poof (self portrait with feathers)Self portrait with Guinea hen feathers – Dec 2019

I began writing this on the last day of 2019, the last day of the decade. It’s obvious that it will be 2020 when I’m able to complete it. It doesn’t matter. The date has nothing to do with this ongoing battle. I remain truthful about the unraveling of my brain. Can’t hide the truth.

Inspiration and imagination have been hard to come by so this drawing surprised me. It’s not one of my best, but it showed that I could still be imaginative. The inspiration was a mixed media sculpture I made 40 years ago. It was a birdhouse I crafted out of wood, and  covered it in green and black polka dot astroturf. The top looked like a house with it’s gabled roof flung open. On the wall near the sculpture, I glued guinea hen feathers in an arrangement that spelled the word Poof! My intention then was to illustrate the destructive role of technology, and it’s encroachment upon nature.

I started to draw the feathers and I pictured a whole page of feathers, like a trompe l’oeil painting, where the things depicted look real. I meant to cover the whole page with them.  Then I stopped after I drew four feathers, and the rest of the page was empty. The feathers looked like they should frame a face. So this is a self portrait, that it’s safe to say illustrates an outlandish creature.

As a young artist, I was drawn to the Surrealist and Dada movements. Now I see that it makes sense that the Dada art movement came about because the artists were expressing their discontent with violence, war and nationalism. It developed in reaction to World War I. This drawing is irrational on purpose. There is no rationale to what is going on with me and there is no rationale to what is happening in the world. 

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By now you have likely heard about the planned deadly terrorist attack on Orthodox Jews in Jersey City by a man and woman linked to the Black Hebrew Israelite movement.   in which a police officer and three civilians were killed in a prolonged gunfight. The two shooters also died in the attack. You have read about the machete stabbing of five people celebrating Chanukah at a rabbi’s home in Monsey, New York. Antisemitism has reared it’s ugly head in our great nation. It is a world phenomenon. Acts of violence against Jews have happened over the last decade in Europe. Now it has crossed the Atlantic. And the crimes are being committed by fellow Americans. In the last few weeks by African Americans. This is really of deep concern. 

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My nightmare

I’m a person who was diagnosed with probable Alzheimer’s, and also a child of deceased Holocaust survivors. The diagnosis came at far too young an age, 62.

I began to have paralyzing nightmares a few days ago. The other night I had a nightmare that horrified me, and I see now that it’s related to these recent acts of violence and my feelings of helplessness as I progress in this horrible disease. In the dream I was going to visit a woman I know who also has an Alzheimer’s diagnosis. I entered an apartment building and a doorman showed me the entrance to her apartment. The “apartment” was a small disheveled room, and she was sleeping on the floor on a mat. Her condition was atrocious. Her body was covered with sores, that looked yellow and blue. I looked at her and knew that I didn’t have the power to help her. I stepped out on the street and was approached by a friendly large middle aged woman who wore an elaborate coat, sort of a tapestry, with large areas of white fur. She smiled and seemed to know me, and I instantly felt I had found a kindred spirit. Then I was both outside on the street and also inside another apartment. The scene kept switching back and forth. I stood by a window and watched a little girl climb out onto a roof between the window and the adjacent building. Then I was outside and a crowd of people were gathered. There was a sense of imminent danger. I crouched by a car protecting another little girl with my body. Then I was inside the room again, looking out the window, and the first little girl was walking back and forth on the low roof between the buildings carrying a small bag. The building on the other side became a car and the little girl walked over to it and someone inside opened the car window and handed her a large gun, which looked like a black machine gun.  I was outside again protecting the other little girl when the woman I met earlier, with the elaborate fur coat walked over to me smiling. Before she could say anything, gun shots rang out and I saw that she was hit. The white fur of her coat quickly saturated with red blood. She fell to the ground. There was nothing I could do to help her.

I woke and sat up. I felt paralyzed to help myself, couldn’t call out to my husband, just felt terrified and unable to self soothe. I grabbed my phone and looked up nightmares in Alzheimer’s patients. It said that some people who have terrifying nightmares where they’re being attacked or chased can be an early sign of Alzheimer’s or Parkinson’s disease. It is believed to be caused by damage in the part of the brain that controls our dreaming “safety switch”.

Somehow I did get myself off the couch and up to bed. I woke my husband and asked him to tuck me in.

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Suddenly Mad- Poof! (Anna Quindlen novel One True Thing)

Nightmares, fear of sleep, fear of being awake… Fear that I can no longer think. Fear that I’m turning into a zombie. Fear that I can no longer comfort myself, no longer able to self soothe. Helplessness. And then the fight goes on. I’m a fighter, and I use my words to fight back. The stigma, the losses…all mount, but while I can I will hold up a mirror to myself, and I’ll hold up the mirror to the world around me.

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I hadn’t read a novel since the diagnosis, despite a full bookcase of books I haven’t read, and those I have read, I have forgotten the storyline. I’ve obsessed about this. My inability to retain. Loss of short term memory. Lost on the page.

Last week my dear friend Jeanne invited us over for dinner. Usually she comes over on Wednesdays and we play Scrabble. She said if I wanted to play Scrabble before dinner I should get there by 2:30 pm, as she needed to start prepping the food by 5pm. So my husband walked me to Jeanne’s, dropped me off and after the Scrabble game, I wandered into her dining room. On the table was a photo and article about Edgar Allen Poe and a toy raven that looked to me like something out of a taxidermist collection. Jeanne told me it was there because she’d hosted an event for the library. I was spooked. I asked her if I could go upstairs while she prepared dinner, and I climbed the stairs to the second floor. I walked into the living room where all the furniture looked so low to the ground. I felt like somehow I had grown taller, as if I had fallen down the rabbit hole in  Alice in Wonderland. I looked at the photographs around the room, her son and daughter in law and their children, her late mother and father, Jeanne’s husband, Bob’s departed parents. In the tall bookcase, I spotted Anna Quindlan’s second novel, One True Thing and took it out and walked over to the couch and sat down with it, and began to read.

I met Anna Quindlan when she lived in Hoboken in the 1980’s. We rode the bus together with our then young sons, taking them to school in Manhattan. At that time I owned an art gallery in Manhattan, and would drop my son off before I headed to SoHo. Anna wrote a column for the New York Times called Public and Private (for which she won a Pulitzer prize in 1992). I knew from her column that she had lost her mother to cancer when she was nineteen. I knew she had gone to Barnard college and left school to care for her dying mom. I knew that this novel was not exactly an autobiography, but that it contained the seeds of her own family saga, as the main character was a reporter who returned home to care for her mother who was dying of cancer. I’d never read it and yet intended to. Here was my chance. I read the whole book, and to my surprise was able to retain so much of it. It took  most of three nights to complete. I was hooked from the first page. The protagonist, Ellen Gulden, is in jail, accused of mercy killing her mother. She says she didn’t do it, and thinks she knows who did. Ellen had returned home to take care of her mother, Kate Gulden. The disease was already far advanced. Her father insisted Ellen quit her job and come home. Ellen had always been the special child of the family, the high achiever, and close to her father, an English professor. She saw herself as the one caught in the middle between her parents. Different from her mother, the talented homemaker, the family’s center – the one true thing. Yet as Ellen spends more and more time with her mother, she learns many surprising things about her, who she thought she knew so well. The life choices she and her mother made are reassessed and she sees her father as an absent figure, unable to be fully present for his wife in her time of need. When Ellen is accused of giving an overdose of morphine to her mother, she thinks her father did it. She witnessed him feeding her rice pudding the night before. He goes up to bed, and Ellen stays with her mother through the night, listening to and watching her breathe, until she takes one long last inhalation of breath. When her father comes downstairs in the morning and asks “How is she?”, Ellen replies, “She’s dead. I’ll go make the coffee”. When the autopsy reveals that Kate died from a morphine overdose, and Ellen is arrested and charged with killing her mother, and her father does not post bail, she is convinced that it was her father who did it. But she does not accuse him, and the case goes to trial. The jury decides not to indict her and she leaves and returns to New York City, and vows to never see her father again. Eight years later she sees him at a theater and they talk and he tells her, “I never blamed you for what you did. It was the right thing to do. it took a great deal of courage…”. She realizes he was not the one who gave Kate the morphine overdose. What Ellen realizes is that Kate herself had kept the many morphine pills she kept asking for to quell the pain. That her mother found a way to put the powder in the rice pudding that her father fed her that night. Ellen didn’t think her mother had it in her. How wrong she was about her mother and her father. She wonders how much of family life is “a vast web of misunderstandings, a tinted and touched up family portrait, an accurate representation of fact that leaves out only the essential truth”.

Suddenly Mad- Poof! (Flowers from Wayne for 43rd anniversary)

December 26, 1976 was the day we were married. Wayne retrieved the bouquet of roses from his car, smiling and hugging me. “Happy anniversary”. 43 years. He is still here. Resigned to this. The one taking care of me. Day after day. Guiding me when I do not know what to do next. Walking me through the conceptual blindness and physical weakening that has overtaken me. Urging me to get up when all I can do is lay there. Getting me started, when the switch that connects me to the world, won’t connect. Helping me down the stairs. Helping me to start the day. Telling me that he will be here. Telling me when he won’t. Giving me the courage to battle this when I’m alone. Taking me for walks. Driving me to see our children, who are for the most part,  blissfully unaware of how difficult our lives have become, because they are shielded from it. They have their own lives. There are baby grandchildren. There are their jobs and their own bills to pay and relationships to nurture. Though I wish they were capable of being more mindful, as the time is slipping away, I am aware that the situation can’t be changed.

How sad I am for him that because of me, he is the one trapped in this caregiving. This is not a life that anyone could imagine, unless they’ve lived through it. And yet though it feels like I’m near the end, the long goodbye drags on. It won’t get better. That is the reality of Alzheimer’s. It progresses. My mobility and speech have been affected for over a year. I’m still ambulatory but my balance is poor and my strength is diminished. He hears me babble and now often doesn’t pay attention. Sometimes when he hears me he says “what?” and I realize I can’t give him and answer. I’ve been absent, chattering on in a zone I don’t understand myself. He listens to me repeat the same questions. It’s obvious that he is very lonely. I can see how wearying this is. If only I could snap out of it. If only. He understands how vulnerable and afraid I am. He holds me up when he can, though it is dragging him down too. He understands it’s the disease. He laughs when I thank him and tell him that the dinner has flavor, unable to think fast enough to say, “mmm…delicious…you’ve become a marvelous chef!”. He knows what I mean. Deciphers the cryptology that is the result of my semantic confusion . There are times still when just being together is enough. He encourages me to write, to draw, to find ways to express myself. That is how he has been throughout our many years together, always encouraging, and that hasn’t changed. He is the love of my life. Despite the things that have torn us apart, the years of misunderstanding and battles, I have known love and it is because of him.

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I can still draw and I can still write. But you my dear reader know that my days are numbered, and each word and sentence is hard won. Happy New Year. I am happy that I can still dress myself and function, to the degree that I still can. I am still able to walk, although not nearly as well as I did a year ago. I’m extremely grateful that I can still read, which I know was one of my first questions when the neurologist told me the Pet scan revealed I have probable Alzheimer’s. Many with this diagnosis lose the ability to read and write early in the disease. Their loved ones plunk them down in front of the television where they watch sitcoms and reruns.

I acquiesced when he said he had to go on an errand to pick up his car that was being refitted with a new tire. Often I panic when he leaves and protest before he goes. I didn’t. I was still sitting in the same spot when he returned. He lay curled up on the chaise I bought years ago from Macys, watching movies on the tele, while I took care of myself, showered, washed my hair, clipped and filed my nails, ate without asking him to sit near me. I then joined him in the living room and watched a movie (the new Eddie Murphy comedy Dolemite Is My Name). Content to be near him. Sad for both of us but still able to share a laugh. It is what it is.

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These are old photos of my mother with me and my older sister. We’re in St. James park in the Bronx. The year is 1958. I was four and Lillian was eleven. My guess is my mom was forty four. The photo of my father appears to be taken in Gombin (Gabin), Poland. It was 1946 and his mother, father, sister and brother, had all been murdered by the Nazis. He left Poland that year with my mother and lived in a displaced  persons camp in Germany (Bergen Belsen), where my sister was born the following year. In 1951 the three of them boarded a ship for the United States.

Leonard Cohen exhibit (drawing of Caarin)Portrait of Caarin

Caarin is the bouyant surprise. The treasure I would have never known if she hadn’t shown up at my door last August in search of her own roots and information about her birth mother (my sister). I wish I had met her when I was was well, but at least I met her when I could still share with her. As a result of our meeting she has met her birth father, his sister, a half brother, and knows about her birth mother and her family. She has met my daughter and my son and spent time with our grandchildren, with my husband. She has taken me to museums and programs in New York. She and her husband have cooked dinners for my husband and I. She’s spoken about her adoptive mother Carol, who died three years ago, and who I believe raised her to feel loved and cherished. I am eleven years older than her. I was eleven when she was born. I am her aunt. I’ve met her children, Jasper and Charlotte. Maybe Caarin will write about all of this someday. I asked Jasper to videotape me. I told him about his grandparents, his great great grandparents in Poland and Russia. I sent him photos. He resembles Menachem Mendel Gershanovich, his great great grandfather.  I’ve sent him links to my films Back to Gombin https://vimeo.com/124443430 and The Lilliput https://player.vimeo.com/video/91234297

History is always disappearing, but for some reason Caarin found me. Maybe Jasper will tell the story about how his mom found out about her birth family and in turn his own links to a past he would never have known about if Caarin had not been the fiece detective she is. Maybe he and my daughter Mimi will meet and make a film someday about this. Or not.

Suddenly Mad- Impermanence and Change (drawing of Jeanne Becker)Portrait of Jeanne

Jeanne has been coming to our home on Wednesdays for the past two years. We must have played over a hundred games of Scrabble. I’ve joked that my epitaph should say, “Alzheimer’s Scrabble Champion”. My husband said isn’t that an oxymoron? I think she’s beat me twice in that time. She’s getting to be an extremely good Scrabble player, and I suspect my reign will be short lived. She is a vegan and a foodie, and brings delicious soups and meals prepared in her kitchen every week. This kind gesture gives my husband a break one night a week, since he is still working, and driving many hours three days a week, and taking care of me, which includes preparing all our meals, as well as just about everything else to keep a roof over our heads. Jeanne and I have talked about our families. She’s listened to me go on about my illness, my fears, and she has stood by me as a patient friend as my symptoms have progressed. She’s told me about her problems with sleep, and how she tries to maintain a sleep schedule. She has talked about her aging friends, about their trials and tribulations. A friendship that began two and half years ago, a month after I resigned from my twenty years of teaching art and art history, has grown and sustained. When I met her,  I had been walking to shul for Rosh Hashanah and stopped to rest on a bench in the park. As she passed I called out to her and asked her if she wouldn’t mind walking with me. I hardly knew her then, but told her I wasn’t well, and took her arm. When we left the service that night, she walked me home, and I told her about the diagnosis. Since then she’s remained steadfast and taught me a lot about what means to be a friend.

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Julie! I have a friend in Alabama, that I text with every day, that I’ve never met in person. Her diagnosis is a mystery, maybe Lewy bodies that has progressed. We commiserate about our symptoms in texts. I’ve spoken with her once on the phone, about a year ago. Since then she’s developed some aphasia and says she writes better than she speaks. I rarely speak on the phone now either, so we hold onto our ability to communicate through texts. We send each other photographs, selfies, pics of our kids and spouses. The illness she has often exhausts her, yet she rallies. We compare our lives and have learned that two woman from such different backgrounds, such different life stories, can bond through illness and the fight to survive. We joke about our losses. I ask her if she has eaten dinner. She said she will have to ask her husband who is outside. I say, “You don’t remember if you’ve eaten?”. She said, “I don’t remember sh-t!”. We’re like a seesaw, balancing each other by remaining in touch, helping each other by understanding how things that were simple are now very hard to do, encouraging each other to keep living and enjoying the little things. She’ll send me a photo of herself eating chocolate! Our moments shared make us both aware that we’re not alone in this journey.

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So why do I feel so alone? Because so many others I considered friends have not called or written,, making me feel like I am a leper? The stigma about Alzheimer’s is when my ire is raised. When the negative emotions threaten to annihilate all the good. The former director and founder of the school in which I chaired the department for twenty years – not a word or a call. She lives seven blocks away. My high school friend. I wrote a eulogy for her mother when she died. I taught her how to make etchings and prints. I nurtured her back to sanity when her lunatic boyfriend killed himself with a gun he had hidden in their apartment, when she was living with him in Canada. I was a good friend then. She knows my diagnosis and initially stayed in touch. Then nothing, not a text in well over a year. I read her effusive Facebook posts. I know that her only child, her son got married. I think if the situation were reversed I would have stayed in touch with her. The cousin who I housed when she had no where to live. Laughed with. Nurtured. For years. The artist girlfriend who used to live nearby who I’ve known since our sons were little and played together. Gone. I click like on her Facebook page in response to the ethereal images of her paintings. What am I going to say? Wish you would visit? Wish you would write to me?  It’s when I focus on the rejection that the sadness and loneliness and the pathetic “poor me” of this disease make me feel so much more defeated.

Josie Rubio an editor and writer wrote a long running blog during her battle with cancer called A Pain In the Neck. She died at the age of 42 last month. I read her whole blog and found her wry humor and honesty incredibly relieving. She said things like, “dying as it turns out, is incredibly boring”. She said it so much better than I can in her post called Deathbed Tourists http://apainintheneck.com/2019/10/22/deathbed-tourists/ she wrote about friends that abandoned her – Why am I so angry? Why am I wasting my precious time worrying over these people? Why do I turn my thoughts over the people I feel hurt by: friends who have turned, people who have said I’m like family then ditched me, people who I’ve felt abandoned by? I need to let it go. But as Kim Gordon of Sonic Youth said of her ex, Thurston Moore, “You can’t really forgive someone if they don’t say they’re sorry.” According to Gordon, the Dalai Lama said you don’t need to forgive if you have empathy for the person. I don’t understand these people though. Yet I’ve thrown so much shade, I’m sitting in the cold. I want to be in the sunshine. Is that a selfish reason to want to forgive? Is it any worse than being like them, wanting to appear kind in the eyes of others by pretending to feel something other than contempt for me? I call them Deathbed Tourists. My illness is a backdrop. It’s so sad that I’m dying, but it’s definitely my fault that our relationships ended. Isn’t it? 

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Of course, I am angry, furious that I got a disease that is worse than cancer because it has impinged so starkly on my ability to get out of my own way and simply live my life.

What I fight is that this disease is seen as a form of mental illness, which it is not. It is a physical illness – it’s neurodegenerative, and affects the brain and body. It is misconstrued as a mental illness, wherein fact it is a medical illness that disrupts the way the brain works and so affects the body and the mind. It plays havoc on the emotions because emotions are hard wired in the brain. We use hearts as emojis but the physical heart does not rule our emotions. It’s all in the brain. Alz is a terminal illness and in many cases the younger the person is when diagnosed, the faster it progresses and the pathology can be extremely aggressive. But I was never a quitter, even though this is not a battle I can win.  So far I have chosen to fight this with all I have left, and take what this tyrannical disease is throwing at me.

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That’s not to say I haven’t cried. Today I broke down in Pamela’s office. Couldn’t hold it together and it felt good to just cry. Because I am sad and angry doesn’t mean my spirit is weak. It was a rough day. The yoga teacher quit. It was helping with my strength and mobility. I will need to find a way to keep moving, to keep walking, to find my inner and outer balance in different ways.

Bill Lyons, the great sports writer, died of Alzheimer’s and Parkinson’s disease wrote a column about being held captive by “Al”. Four years after his diagnosis he revealed it was taking away his ability to construct paragraphs and sentences. “But I am trying”, he wrote.

I don’t want pity, but I do want understanding. I’m weak and strong. I’m scared and brave. I’m damned angry that I got this disease and I fight it and I cry.

I didn’t think I could write this post after not being able to write for a month. I am having a hard time finishing it, can’t find the words. But I am trying.

Suddenly Mad- Poof! (Statue of Christopher Columbus)Statue of Christopher Columbus (Italian explorer who opened the New World for conquest and European colonization)

Suddenly Mad- Poof! (Clouds over the highway)

Wish this was a dream

Suddenly Mad- Wish this was a dream (drawing of Wayne with his eyes closed)Drawing of my husband with his eyes closed – November 2019

I had a dream that I was normal and didn’t have Alzheimer’s. I saw myself walking normally, happy, laughing, and not at all impaired. Just the woman I used to be. Sociable, gregarious, not agitated, not depressed. In the dream, I was in a large festive bar and met a man, a robust fellow, who was very enthusiastic, friendly and full of life. I looked for my cousin Joyce to introduce him to, and found her and invited her over. She was just like I always remembered her to be, full of life, cracking jokes. She was glad to meet him. The only strange thing was that as he spoke to her, she started to levitate. He was very tall and she is short, and somehow his gaze made her rise up to meet his height, so they were face to face. Yet even that seemed pretty normal until I woke up and realized it was a dream.

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I didn’t want to spend Thanksgiving alone with my husband at home. I wanted to see my grandchildren, although I was nervous about being with extended family (I’m at a point where I’m very sensitive to sensory overload) . I wanted to be with my four year old granddaughter and the twin grand babies, who are now just over a year old. They change every week and are growing fast. We hadn’t seen them since our granddaughter’s birthday party at the beginning of November. Sara was just starting to walk then and Michael was crawling and pulling himself up on furniture to stand. Now they are both walking and picking up toys and exploring. They are both adorable and it’s exciting to see their growth and developing awareness and unique personalities. I snapped photos and followed them around as they toddled from room to room.

For days I was concerned about getting agitated at this dinner, because when I am around a large group of people that is what often happens. I’ve become so self conscious about how much I’ve changed. It’s hard for me to follow conversations when there is more than one person speaking, but in this case, they speak Russian (which I don’t understand at all), and switch back and forth to English. I didn’t want to be sitting there with a dumbfounded look on my face, feeling lost and alone.

At our daughter in law’s request, my husband prepared an outstanding mashed potato dish, turkey stuffing, fruit salad, and bought a berry cake. Our son’s company gave him a turkey, and our daughter in law baked it. Her mom and step father brought Russian salads and smoked salmon with crepes. It was a cuisine of blended cultures and everything was delicious.

I was relatively at ease, which means I was talking and commiserating. Everyone enjoyed the food. Since our daughter in law’s step father had been ill with what appeared to be symptoms of a very bad cold or flu, the extended family left soon after dinner and clean up. My son retired to the piano room and began playing a Chopin nocturne and baby Michael, who loves music, walked over to the piano bench and swayed responsively to the music. My son is kind of quiet but when he plays piano he communicates through his higher self.

Sara toddled over and gave me the sweetest dimpled smile. I found a place to sit amid the piles of coats and books stacked on the settee. Ellie pranced around in her pink princess Aurora dress. She tossed a ball high up into the opening in the atria and beckoned to me to play catch. Then our daughter in law called out to my son from the kitchen, that it was time to put the twins to bed. The last time I was there, I went upstairs with my son when he got Michael ready for bed. I thought it would be okay to do that again, so I gingerly followed him, carefully walking around the piles of clothes and shoes stacked against the stairs. We went upstairs to the bedroom with the twin cribs, and I went to sit down on the rocker. Then my daughter in law called from downstairs to my son, “make sure you cover the rocker before she sits down”. He dutifully unfolded a diaper pad and placed it on the chair. My sense of smell has become particularly acute, and the perfumed synthetic smell of that diaper pad, a large piece of blue plastic with fuzzy cotton backing, wafted up my nostrils as soon as I neared the chair, and it bothered me a lot. I didn’t think it would be a crime if I sat in that chair without that diaper pad. Okay, I was wrong to remove it and sit down, but what followed was outrageous. My daughter in law stormed into the room and started screaming at me at the top of her lungs, and threatened to throw me out of their house, because I sat on her nursing rocking chair without this cover. My husband rushed in and demanded I come  downstairs and said we have to leave. My daughter in law followed, continuing to berate me, saying her grandmother had had Alzheimer’s and didn’t behave like this. I said “your grandmother was in her 90’s and no, she didn’t have Alzheimer’s, she had colon cancer”.  I said “you are so concerned about my sitting on the rocker with my street clothes, but not concerned that your step father has the flu, and has been coughing near the babies all night”.

Anyway, a nice Thanksgiving dinner ended very badly because I disobeyed and sat on my daughter in law’s rocker with my “street clothes” (as if I spend a lot of time on the street). She made me feel like a leper. I was shaking in the car on the drive home. I couldn’t quell the agitation. i was whining and chattering away and my poor husband needed me to be silent so he could focus on driving in the dark.  I texted my daughter in law and expressed my dismay at her wrath. She wrote back, “sorry I screamed at you, but you shouldn’t do things that will make others upset, because you feel like it. Whether you are dying or not is not an excuse!”

I texted her mom and explained what happened. She is much more level headed than her daughter, obviously, and wrote me, “she is under a lot of stress between three kids and a full time job”.

I don’t meet her expectations now that I have this nasty affliction. I suspect I never met her expectations. Sitting quietly and withdrawing into my phone is not okay. Because I move awkwardly and I’m slow, it’s impossible to play vigorously with the children. I even have a very hard time squatting now and then standing up. Daughter in law took offense that I followed the babies around snapping photos rather than playing with them. I can’t seem to do anything right. My confidence plummeted.

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Is it fair to expect others to understand that it’s the disease that has caused me to change? Before they were married my son and his soon to be wife lived in a separate  apartment upstairs in our home. I was healthy then, working and often shopping and cooking. I’d bring them bags of groceries and treats. I’d cook for them. I was always generous and aimed to please. I introduced them to my (then) friends and colleagues. That was only five years ago. Obviously the illness I have has taken a toll on my functionality and has changed me radically. The progression has been fast. I retired from teaching only 2 and 1/2 years ago, pushing myself to continue as long as I could. At that point I was was walking normally and had no verbal impairments. What was obvious to me then was that I could not function with impaired memory. If I put something down on a surface, my coat or my books or art supplies, I would immediately forget about it. I could not track my belongings or materials I needed for teaching. I was forgetting students names. The progression of the illness was accelerating, and the stress to keep up was intolerable. So I retired and my husband marched me down to the social security office where I applied for Compassionate Allowance Disability due to Alzheimer’s. Some people progress rapidly and unfortunately I am one of them.

It’s been 2 and 1/2 years since I retired. Initially I was able to go the gym several times a week, and remained active. I could still walk for miles then. About a year ago I began having problems walking. My balance became affected and as I walked, I felt a distinct sense of gravity pulling me down. It became harder to stand up from a sitting position. Motivation to move is affected and the previously natural inclination to get up from my bed and start the day requires pushing myself very hard. Along with this I have developed symptoms of aphasia. Not only has the sound of my voice changed and sounds metallic to me, childlike and tinny, but the order of the words I hear myself speak, are often disordered. I’m not sure when the babbling started exactly. Perhaps it was a year ago that I began to hear myself say things that made no sense at all, as if an alien had invaded my brain. Streams of words that have nothing to do with conversation would erupt as I sat with my husband. I began to narrate my actions out loud as I did things like wash a dish or a cup (“now take the sponge and put soap on it and wash the cup, dry it and put it away”). My husband would tell me I was babbling, and I would apologize and say I would stop, and less than a minute later I would be vocalizing again, sometimes coherently and sometimes incoherently. Now I notice when I write with a pen, letters in words are sometimes missed, and I need to correct as I write. The act of writing is obviously important to me. If my speaking is impaired and writing is challenged, then I will not be able to communicate.

Now I spend the bulk of my time alone. My husband is quiet, a reader and often withdrawn. It’s an effort to remain engaged. The fear I have of becoming that empty shell of a person I have seen at the programs, people who have become mute, is ever present. Is it realistic to pray I do not last long enough to become that?

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People who have Alzheimer’s disease are extremely sensitive to body language and spoken language, and may easily react with anxiety to a frown on your face or tension in your voice. There needs to be an awareness of their reaction to your moods.

Please read this PDF called Understanding the dementia experience http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

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Suddenly Mad- Wish this was a dream (falling figure drawing)

I don’t know how long I will last with this disease but I am sick of it. I can’t do the things I used to do. I used to single handedly throw dinner parties for a dozen or more people preparing all the food from scratch, while I was still working full time. Now, I’m a prisoner of my brain and body, my broken vessel that has forgotten how to cook, how to entertain, how to do so much. Just getting up from bed and putting on my robe, and walking down the stairs is a sequence of steps I have to do carefully, and with effort. I lay in my bed for hours in the morning, unable to get started, to get up and start the day. Now that the winter is almost here, I get cold so easily and my body is becoming stiff. My sleep is fragmented. I fall asleep for a few hours, wake, and then sleep again for a few more hours. I haven’t had 7-8 hours of consecutive sleep hours since 2015. When I wake my hands and feet are often numb. No feeling at all. i move them and try and wake them. It takes time to get the feeling back in my extremities. Muscle twitches ripple inside my thighs and back. My right leg often shakes uncontrollably.

I have to set my clothes for the next day on a hanger and bring them downstairs, no matter how late it is when I get to bed, or else I won’t be able to get dressed the next day.  I’ve forgotten how to get dressed in my bedroom the way I used to. I know that must sound odd, but it’s not part of my routine anymore and so I’ve forgotten how to do that. It would be new to me. I’d have to learn or relearn how to do that.

So the night before I have to set the clothes on the hanger. The pants go into the hooks, the socks between the bar and top of the hanger, my underwear hangs around the handle, and the hanger is hung on the bathroom hook inside the door. This is where I get dressed every day. Each article of clothing is assembled in the order  I have to put each item on my body.  When I’m finally through my morning routine (make the tea, write the list for the day. check the date on my iPhone calendar, I sit and do the New York Times crossword and mini crossword puzzles on my iPhone and redo the ones from each day from the previous 7 days to see if I can remember the answer to each clue. Then I take my thyroid meds with my tea. I eat a banana and then do fifteen sit ups on the anti-gravity table. I drink a cup of coffee and do a round of Lumosity cognitive games, trying to attain at least a somewhat comparable score to the day before. I then wash the coffee cup and dry it and put it away in the cabinet and then venture into the bathroom and talk myself through the process of getting dressed, groomed and ready. I recite out loud, “First the right leg goes through…, then the left leg…, then pull them up. Take the shirt and pull the opening over your head. Then the left arm goes through the sleeve, then the right arm goes in the other sleeve. pull the shirt down… Then sit down and put the socks on. First the right sock and then the left sock. Then put the shoes on.” It’s exhausting to have to remind myself to think of each step, maddening to have lost so much of my executive function. Frustrating that I have to do the same thing in the same order to get dressed. I do this every day. Everything I do is in steps, and it’s slow going. I am sick of it. Have been sick of this procedure, this groundhog day, this adaptation, this insanity, for a long time. I have a typed sheet which details these steps taped above the sink in case I get stuck and can’t remember what goes next. This is how I am able to function, the way I am able to get dressed “independently”. No, I never had OCD when I was well. I would just do things spontaneously. I would get up, take a shower, get dressed, have breakfast and head out the door. I would not have to THINK about it.

Suddenly Mad- Wish this was a dream (skeleton hanging)This is a photo I took on one of my walks with Theresa after Halloween.

 

Suddenly Mad- Wish this was a dream (Lincoln Center Moments - Kaleidoscope NY Philharmonic teaching artists performing)I keep the printed programs from Moments at Lincoln Center, so I will remember what I saw and listened to. This is a photo of an ensemble of violin and viola players who are teaching artists through the New York Philharmonic. I attended the program titled Kaleidoscope, with Jeanne on Monday, November 18.  The string quartet played movements by a contemporary composer, Gabriela Lena Frank and movements composed by Antonin Dvorak, the Czech composer who employed rhythms of the folk music of Moravia and his native Bohemia absorbed into a symphonic tradition.

I often see people I have met at these programs, people with their care partners. I usually go over and say hello. Sitting in front of us were Paul and Maureen (who was diagnosed with Alzheimer’s). She recognizes me but has little to say except hello. At the end of the program I go over and say hello to Fred and his wife, who I met a year and a half ago at The Alzheimer’s Association in Manhattan. She was helping him put on his coat and scarf. I ask her can’t he do this by himself. She says it’s just easier to help him. I think of the way I force myself to put my own clothes on, how I struggle to get my own coat on and zip it, and how my way of doing things is not easier, but I find it necessary in maintaining a semblance of independence. I go over and say hello to Milton, who I met previously. He was diagnosed with Lewy bodies. He told me he frequently travels alone from Brooklyn to meet his brother in Manhattan. This time he was with his daughter, and I introduced myself. I sensed her unease when I uttered the words early onset Alzheimers.

Suddenly Mad- Wish this was a dream (Milton and his daughter at Lincoln Center after program)Milton and his daughter in the after program

After each concert or program people with dementia and their care partners of companions are invited to go to classrooms for discussion, music and art making. In the spirit of multiculturalism, we were shown a map of the world and given a pushpin to stick into the location on the map where we were born, or a place that our ancestors came from. I looked at New York and saw that there were already a dozen or more push pins in and around it. No room for mine. So I looked for Poland, where my late father was born and raised, and where I lived as an American Fulbright. I looked for Warsaw and Lodz, and pushed the pin into Lodz.

After the program, I called my dementia buddy Tim on my phone, from the lobby. We’ve been having zoom chats on Monday’s at 3 and since I wasn’t at my computer I couldn’t chat with him. I observed a woman pacing around near the elevator, and when I got off the phone with Tim, I approached her and heard her speaking to herself. Her speech was  not reality based at all. I noticed that she was wearing a light fleece jacket and thin pants, not at all like the long down coat her aide, a glamorous died blonde with painted on eyebrows and a Russian accent, had on. As we rode down the elevator with them, I mentioned to the aide that this woman did not look like she was dressed right for the weather (it was a rainy and cold day in New York). The aide looked at me and said, “Oh she always shakes”. Once we were on the street, Jeanne called for an Uber to pick us up. I watched as this woman shuffled along shivering next to her aide, who had by now pulled the fur lined hood of her luxe ultra down coat, up on her head. I was helpless to do anything to help this woman, but I felt sorry for her. She was not being cared for properly by the aide. She was shivering. That night I wrote about this woman and her aide on the AlzConnected, online forum. To my surprise and consternation, someone I had met on an online dementia Zoom chat, a woman who initially said she had been diagnosed with mild cognitive impairment, but then claimed she was diagnosed with Alzheimer’s, wrote in answer to my post, that if she had seen this shivering, babbling woman underdressed, and noticed the aide was not taking proper care of her, she would have followed them and called the police. I thought about this, thought about how slowly I move. I pictured myself following them and calling the police and getting arrested for harassment. I imagined the New York police responding to such a call (as if they would), and my trying to explain that this was elder abuse. In the best of all worlds this action would have been a wake up call for the aide, who is being paid to take proper care of a person with dementia, to do her job. But this is the real world and it’s New York City where homeless people are wearing plastic bags over tattered coats to keep warm and dry. That this woman with dementia had an aide who was accompanying her meant she was cared for. Obviously not well cared for, but I’m not equipped to change that besides pointing out to the aide that this poor woman was shivering and should be dressed in a winter coat and warm pants. I was upset that the woman I met on the zoom chat who responded to my post, didn’t get it- could not perceive my  own helplessness because I too am impaired. I felt so misunderstood because I tried to have an effect. I did speak to the aide, and told her i thought the woman wasn’t dressed for the weather. I planted the seed. it’s all I could do and the woman responding to my post criticized me. Instead of defending myself, I deleted the entire post, her words and mine.

I can’t save anyone. I can only observe and I can  speak, but I can’t force someone to take better care of their charge. I can barely take care of myself.

Suddenly Mad- Wish this was a dream (LaGuardia High School across the street from Lincoln Center)

So in the spirit of “there before the grace of G-d”, I’ll give thanks for what I do still have. A roof over my head, warm clothes for the winter, my sweet, cute and sad husband who takes care of me now and has become a great chef out of necessity.

Suddenly Mad- Wish this was a dream (poster for the movie Onward)

 

My daughter bought me these warm socks with hearts on them. So thoughtful. I love her so much.

Suddenly Mad- I wish this was dream (socks with hearts that Mimi bought for me)

A message for Greg; you said I lift you up. That’s funny because I’ve actually become the Debbie Downer of Dementia! https://www.youtube.com/watch?v=wZ1AjaNjack

You have rose colored Alzheimer’s glasses my friend. Maybe it’s the Prozac? Nah! It’s your soul, dude. You have faith. I look to you to pull me up when you fall.

Suddenly Mad; Wish this was a dream (empty bench in the park)

Why in the world would I take a photograph of an empty park bench?

 

Should I call this despair?

Suddenly Mad - Desperation (portrait of Mimi)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.

Suddenly Mad- Desperation (Lincoln Center Moments - Evan Leslie presents old films from Lincoln Center library - Thelonius Monk)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.

suddenly-mad-desperation-lincoln-center-moments-program-steve-herring.jpgSteve Herring singing James Brown’s, I Feel Good.

Suddenly Mad- Desperation - (Lincoln Center Moments - Celisse)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.

Suddenly Mad- Desperation - (Rubin Museum - Tsherin Sherpa)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!

Suddenly Mad- Desperation (visit to Caarins home Sept 28)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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Suddenly Mad- Desperation (synagogue Bima Yom KippurOctober 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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Suddenly Mad - Desperation (trip to Theresa’s apartment in Bayonne)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.

Suddenly Mad- Desperation (trip back from Theresa’s apartment - David Bowie mural)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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Suddenly Mad- Desperation (a sign embedded in a tree - Sept 21)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.

Suddenly Mad - Desperation (Arboretum and mobility)

Conjuring Leonard Cohen

Leonard Cohen exhibit (drawing of Caarin)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.

Leonard Cohen exhibit at the Jewish museum A Crack in Everything (photo of Cohen)

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.

Leonard Cohen exhibit (I hadn’t been to the Hoboken waterfront in over a year - Norwegian yacht) 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.

Leonard Cohen exhibit (I hadn’t been to the Hoboken waterfront in over a year)Leonard Cohen exhibit (I hadn’t been to the Hoboken waterfront in over a year - the new concrete and steel staircase structure going up to Stevens)

*****

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.

Leonard Cohen exhibit at The Jewish Museum (film and video of concerts edited together)Leonard Cohen exhibit at The Jewish Museum (film and video of him at different ages)Leonard Cohen exhibit at The Jewish Museum (audience watched the conjuring of Cohen in films)

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.

Leonard Cohen exhibit at the Jewish museum (with hanging microphones to sing along to Hallelujah )

“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.

Leonard Cohen exhibit (lyrics to Hallelujah page 1)

Leonard Cohen exhibit (lyrics to Hallelujah p. 2)

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

The unbelievable story of Caarin showing up…

Suddenly Mad- Michael and Sara drawing 8 monthsSuddenly Mad- The Unbelievable Story of Caarin showing up (drawing of Sara and Michael at 9 months)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.

Suddenly Mad- my mother in her 20’sSonia my late mother in her 20’s in Russia

Suddenly Mad- my parents 1975My parents Michael and Sonia in 1975

Suddenly Mad- my parents and Lillian and me in front of the pink Thunderbird (Bronx)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.

<<>><

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.

Suddenly Mad- Crochet square

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Suddenly Mad- Hatha Dya As Bairava (the terrifying one) Giant mask at Rubin

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. 

 

 

 

 

 

 

Now and Then

now-and-then-double-self-portrait-before-and-after-e1561074752422.jpgDouble 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.

Now and Then - Portrait of Adele Bloch - Bauer by Gustav KlimptWe 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.

Now and Then - Self Portrait by Egon Schiele

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.

Now and Then - Self Portrait with Jewish Identity Card by Felix Nussbaum

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.

Now and Then - synagogue windowThere 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.

Now and Then (big sky)