I was afraid, really afraid that I wouldn’t be able to write anymore, and that the blog was over. I couldn’t get started when I tried day after day, night after night. Mainly, it was a matter of not being able to get started. I know it’s not writers block. I know it’s a symptom of this disease. It’s the same thing as getting up and getting the day started. Apathy and confusion. Rigidity and physical malaise. Brain fog, or with me brain blizzard. Not being able to see the forest from the trees. It takes a lot to fight it. Hard to get started and hard to follow through on tasks. It takes all of me. So here I am about to dig in and begin. As long as I can write, I am still here, and as long as I can blog, I can communicate. Alzheimer’s be damned!

People, places and things. Those three words encompass everything, but it’s the details that tell the story. The details flesh it out, and how much progression there has been. But the problem with me is that I get lost in the details. Things are quite confusing now. There’s physical deterioration – difficulty walking and talking, going up and down stairs is harder to do; word salad happens often and I can’t put an order to anything that’s happened without the help of the photographs on my iPhone. These tell me the dates and jar my memory. But I CAN with some effort still write about the experience of living with this. Where to start? I’ll start with people.

This is a drawing of Dina who is a lovely woman who I wish I would have known while I was well. She’s a sociologist and her daughter was my art and art history student, but I never knew her well. In fact, I did not know her at all. She was just someone I would see dropping off her daughter at school, and occasionally greet her and say hello when we were both at the synagogue. Dina came to my aid through the synagogue. She read about this woman who has younger onset Alzheimer’s on a posting that the rabbi and secretary sent to members. She didn’t know I had been her daughter’s teacher. She did know that I could no longer prepare meals for myself, as that’s what the anonymous posting said, and started bringing lunches and dinners. She started visiting in September and has come about twice a month. At first I had a lot of trepidation about this. But once she started coming over, she confided in me that her brother-in-law had a stroke and is in a wheelchair and can’t speak. Obviously it was a serious stroke, and she has experience, empathy and a good deal of understanding that a person can suddenly lose physical and cognitive ability, and that the brain, this mysterious master of our lives – can be damaged irreparably. She had never met anyone with younger onset Alzheimer’s before, but she’s a sociologist, a good soul, and she is interested in people. Sociology is the study of the development, structure and functioning of human society, and the study of social problems. I think Dina knows that people with Alzheimer’s are still quite human and need to be treated as such, and it is a social problem that people who have Alzheimer’s are ostracized.

In my estimation, this is the age of Alzheimer’s (and other dementias). I’ve written that if this can happen to me, it can happen to anyone. The numbers of people getting Alzheimer’s and other dementias is increasing and it’s becoming an epidemic. It’s said that by 2050, there will be a ratio of one caregiver to each person who has Alzheimer’s.

Dina was also my grandmother’s name. My father’s mother who was in the Jewish ghetto in Gombin, Poland. She was among the 2500 plus Jews who were taken to Chelmno, the first extermination camp in the occupied Poland. They were put into the Einsatzgruppen vans and the exhaust was turned inside and they were asphyxiated. At Chelmno their bodies were burned and their ashes and bones scattered. My uncle Chaim was with her in the ghetto and met the same fate. My grandmother, Dina, was 53 years old when she was sent to Chelmno.  Chaim would have been 25. Meeting Dina reminded me that it was my grandmother’s name. The grandmother I never met but was told these stories by my father.

Dina has a broad face and kind eyes. I snapped her photo when we went for a walk in the park. It was cold and she was wearing a blue jacket. She smiled the warmest smile.

*****

My husband takes care of me. He is my primary caregiver. He has been devastated by the disease and watching me progress through it. He prepares my meals, makes my bed, and takes me for walks. Our relationship has no semblance to what it was. I know that without him, I would die sooner. I would wither away. He knows this as well. Lately he has been more affectionate. We have laid together in bed and cuddled. Of course  we used to do this and much more all the time. We had an intimate relationship. This month we will be married for 42 years. Alzheimer’s has come between us. It has changed the dynamic of our relationship and virtually destroyed what we had – a marriage of equals. He became my caregiver. He takes me for walks, and lately is the one who walks me to Ruth’s. He walks me to my therapists office and picks me up. He helps me to cross the street. Alzheimer’s has done this to me. To us.

On Thursday, December 13, I had an appointment with the neurologist, Thomas Wiesnieski at NYU Pearl Barlow Center for Cognitive Neurology. I hadn’t seen him since last July, and I have progressed a lot since then. As I sat in the waiting room I snapped some pictures.

The woman above is Ursula Auclair, a social worker at Pearl Barlow. In July 2017 she invited me to attend a Reminiscence Group for people with Alzheimer’s. Everyone there was between age 80 and 96. There I was with my iPhone, feeling extremely out of place. The folks in the room bounced a balloon to each other, and were encouraged to air their grievances about their caregivers. She ran the group. A man named Boris sang a Broadway show tune. I pulled up the music for it on my iPhone. Clearly I was not like these other people. I had not lost all of my abilities and was participating in the way I knew how. I was vocal then, talkative, not withdrawn and at that time there were no speaking impairments. After attending two times, I sent her an email and asked her if there was a support group for people who were closer to my age and level of cognition. She phoned me and told me not to return to the group, offering no other options.

The woman being wheeled into the waiting room is an Alzheimer’s patient in her early 80’s. I watched as her 2 caregivers tended to her, removing her hat, adjusting her hair, crossing one leg over another for her. She looked like she was smiling. Later, after my appointment, I spoke to her aide. The woman had already gone into her appointment. I asked her about the woman and she told me that she speaks very little and does very little for herself. She said that 2 years ago she was able to dress herself, and spoke a lot. She said she naps a lot during the day, and lays awake in her bed at night. She said her demeanor is calm and content, and she was glad that she took care of an Alzheimer’s patient with this kind of nature, as she’d heard that some Alzheimer’s people are angry and violent. Again I was confronted with the misconceptions about this disease. Are people either calm and content, or angry and violent? This woman is in her 80’s and I guess she is taking the disease in stride. But I’m 64 almost 65, and I am not able to take this disease in stride. There is nothing worse than younger onset Alzheimer’s. It cuts a person down and destroys them when they are still strong and functioning, and little by little makes functioning, processing, living – impossible. It kills a person bit by bit, and since younger onset usually goes faster, it does this in a few years. I hate this disease.

My doctor wants me to take Memantine. He says it will help with confusion. I am too scared to rock the boat. I looked it up and see the side effects include diarrhea, constipation, dizziness, headaches, and CONFUSION. How can a drug which is supposed to help a person in moderate to severe Alzheimer’s have a side effect of confusion? This side effect is exactly what it’s supposed to treat. Confusion. I spend a good deal of time alone, and want to remain continent. If this drug causes diarrhea, I will not be able to handle it. I would be constantly on the toilet, because I would not want to soil myself. I know that there are no drugs to treat Alzheimer’s, that these medications have been around since the 1980’s and do not do anything but cause side effects. Of course I would want there to be something to help me. The reality is that it’s only my effort to walk, exercise (I do yoga and go on the recumbent bike) that keeps me going. He wants me to have another Spec scan or Volumetric MRI but the insurance rejected it the last time he ordered it. He said he would submit it again to see the estimate of further progression. Maybe the problem is that I so want to not progress further, and all this disease does is progress. I am trying to fight it. It’s a losing battle. How to remain calm and happy when the prognosis is that things will only get worse? How to be like the woman in the wheelchair with a smile on her face? Just let it happen? Do I have any choice? Wiesnieski said exercise will help. I think that is the only thing that he is right about.

I showed the doctor how my walking has changed by walking down the hall and asking him to watch. He said it looks like mild discoordination. I lumber from side to side. Ruth says I shuffle. There is a feeling of gravity when I walk that makes me feel like I’m being pulled down. Nothing about the way I move now feels mild. This neurologist is so jaded about this disease. Unless he sees me unable to walk at all,  he sees my symptoms as mild. I know that they are not mild and that it’s global impairment. It’s not that I can’t walk. It’s that I am unable to process movement with thinking. I feel like there is a delay between initiating movement, walking, talking and doing. It’s like the synapses are lagging behind, and this explains why I have to push myself to do anything. My therapist, Pamela, asked me why I go to these neurologist appointments if there’s nothing he can do to help me. I guess it’s a way for me and my husband to chart my progression, for whatever it’s worth. As long as I’m even aware of my progression and can communicate,  then I am still in the loop.

On the ride back from the neurologist, we passed Macy’s Herald Square. There was a huge sign made up of little lights that said “Believe”. I asked Ruth what she thought this meant. She thought it meant they were telling us to believe in the birth of Christ. I looked it up on my iPhone and it showed that it was there to promote writing letters to Santa for the Make a Wish Foundation. For every letter received Macy’s will donate $1 up to $1 million to grant the wishes of children with critical illnesses. Nice sign. Believe. Believe that wishes can come true?

I used to go to Macy’s all the time. the last time I went into the store was when I shopped for the dress and shoes I wore to my son’s wedding. That was in January 2014. that’s almost five years ago. Before this disease came for me. The dress is still hanging in my closet. It is a gold sequined floor length dress. This photograph was taken in the dressing room at Macy’s when I decided to buy the dress. Within a year and half everything changed and the disease started to take over.

My husband turned and headed up Seventh Avenue passing the entrance to The Long Island Rail Road. For many years, this is how I would travel to my sister’s home in Woodmere, Long Island. For over 27 years I would take that railroad to see her. She hasn’t seen me now in almost five years. The last time was when she came to my son’s wedding. I can no longer travel to see her, and she will never come here. She does not want to see her sister who now has Alzheimer’s disease. She will likely never see me again.

My husband turned on 39th Street and headed to the Lincoln Tunnel, for the drive home. I looked up through the roof window of the car, and snapped a photo of the buildings I see when I look at the New York skyline from Hoboken.

People, places and things make up my experience. I’ve become the observer now. I walk down memory lane remembering the life I had, and lament about how limited my existence is now. I was a world traveler. I lived in Poland, visited Germany, England, France, Italy, Greece, the Russian Ukraine and Israel. I was in Spain and Morocco as a teenager. I thought that someday my husband and I would go to Asia. I wanted to see Japan and China. That will never happen. My days are limited now to the vicinity that my husband can drive us, and to the places that I can still walk to. My husband is glad to see me get up off the couch and exercise on the recumbent bike. He takes me for walks around this small city. Today I walked .81 of a mile, as it shows on my phone app.

A new habit or quirk, has been to take a photo outside my patio door when I am finally up and ready, having dressed, groomed and brushed my teeth. I go to the patio door and open the shades and snap a picture. I guess this can be thought of as a conceptual art piece. Or a projection of the loneliness of dealing with the isolation of Alzheimer’s. I then take a selfie and send it to my daughter, to show her that I am up and dressed. When my husband is at work I send it to him as well.

This was taken on Saturday, Dec. 8. I snapped it when my husband was walking me to Ruth’s. It’s a Christmas display outside of a house a block away. I used to think it was odd that some people who live in this city, would never go to New York and would hardly ever leave this town. I used to think how small their lives were. Now my life resembles theirs, but not because I have no reason to go and see and do. It’s mainly because I can’t. So I look at things in my environment, and photograph them to remember.

On Thursday, Dec 6. I had an appointment at the hair salon. I go every six weeks, but getting there has been increasingly harder and functioning while I’m there creates anxiety. It’s only a half mile away. Ruth was going to come over and walk with me and we were going to come back here together. While I was stark naked in the bathroom trying to get dressed and ready, she called and said she couldn’t come with me, and had to go the eye doctor. Something was happening to her right eye, which turned out to be macular degeneration. She told me to cancel the appointment and postpone it for a week. This was the beginning of Ruth not being able to spend as much time with me. She has her own degeneration to deal with. I got dressed and ready and pushed myself to eat and set my alarm for the time I would have to leave my house to get there on time. I was concerned about how I would remove my coat and sweater, and how to hang them up so I could put them back on myself when it was time to leave. I didn’t know if i should put my sweater under the coat when I hung it up, and how I would put my sweater on, while I held my coat. I was concerned about dealing with my wallet and paying, and all the details of coordinating my things. I was concerned about what to talk about to the hairdresser, who does not know I have Alzheimers. I am very quiet when I’m there. I’ve become much more withdrawn since I noticed nonsensical  babbling coming out of my mouth, and aphasia and word finding with stammering, has happened. I used to ask a lot of questions and engage with others while I was there. I don’t do this so much anymore. I asked my daughter to be available to text and my husband too. This is the anxiety of Alzheimer’s. Just going out and functioning in public places is getting harder. The triumph in this was that I was able to go there myself and get my hair trimmed and roots colored, pay for it and get my wallet back into my purse with the credit card and receipt inside, and get home by myself. Every action I take requires procedural thought and action, and my physical motions, actions, and thinking are really out of sync.

*****

On Saturday, Dec. 15 Santacon was held in Hoboken. Santacon is an annual pub crawl in which people dressed in Santa Claus costumes parade in several cities around the world. We passed a bar and saw a bunch of people dressed in Santa outfits. The outfit with buff abs and a tie and suspenders inside a Santa outfit looked unique and particularly clever to me, and stood out. My husband then walked me to Ruth’s and I spent the rest of afternoon there. Ruth was laying under her blanket sitting in her armchair the whole time I was there. We have different forms of degeneration. She is declining physically and it’s hard for her to move around, and now with her eye and macular degeneration she is more inclined to just sit and rest. I don’t think sitting is too good for her, but she says when she walks a lot she has too much pain. With me and my Alzheimer’s and her and her physical decline, we meet somewhere in the middle.

On Wednesday’s, Ruth’s sister Jeanne, usually brings me a meal and stays to play Scrabble. Ruth is almost 73 and Jeanne is 77. I’m 64 almost 65. I would not have been friends with either of them if not for Alzheimer’s. They never knew anyone with younger onset, and their empathic natures brought them into my life. They are both rare in that they’re wise and compassionate, and willing to learn. But they’re both dealing with the setbacks of their own aging and their ability to be engaged with me is limited. Before playing Scrabble with Jeanne last Wednesday, I wanted to see if I could still do this Ravenberger puzzle that says it’s for kids 4+ years of age. It’s been on my table since the summer of 2017 and it used to take me 9 minutes to do it. This time it took 17 minutes. Different parts of the brain are used for different actions, and it seems that the visual, perceptual and physical are more affected in me. I say this because language and words when I play Scrabble with Jeanne are not so impaired. Our Scrabble scores that day were me- 324 points, and Jeanne 202 points. I usually beat her at Scrabble, but she has beaten me once. I can see how to add a letter to words and build a new word. After Scrabble, I set up a plate of the food Jeanne brought. That’s when the confusion really begins. The actions I need to take transferring food to a bowl and a plate, pouring the drink into my cup, heating the food in microwave, bringing it to the place where I sit at the kitchen island, and then chewing and swallowing are tasks that I have trouble with but still can do. I used to love food. Now the procedures of eating and cleaning up after myself, are tasks that I have to concentrate hard on to complete. There are many steps to it, and I get anxious when Jeanne wants to leave before I am done. For me time is endless now, and people have lives and need to leave. It’s that moment when they go that is hard for me. Being alone is hard for me. Which is why I write so as to be heard. Makes me feel less alone to describe my experience.

This is photograph with drawing that hangs on the second floor in our home. It was a gift made by an amazing photographer and artist named Geanna Merola, who was a friend for years, who used to live in this city. I’ve seen her a few times over the years, but mostly we kept in touch on Facebook. She doesn’t know that I developed Alzheimer’s and would be very sad to know, but I remember her and think of her with love and respect. The image was taken in 1983 when my son was a little over a year old and I was 29. It was taken when Geanna and her husband Erik visited us when we rented a house one summer in Palenville, New York, which is in the Catskill mountains.

Images are what helps me to remember.

See the dish running away with the spoon, and the cows that she drew on the photograph?

It’s inspired by the Mother Goose rhyme, Hey Diddle Diddle.

I am making this phrase, The Cardinal Truth, my own. I do not mean the cardinal truth as a symbol of the four virtues – which were recognized in classical antiquity and traditional Christian antiquity – temperance, courage, prudence and justice. I mean to refer to the idea that we must walk in spirit in all things, and listen with our spirit to all things.

My husband spotted a cardinal, and called out to me to come and see him. I thought about the robin that kept visiting my backyard this past summer and in the early fall, that I believed was a visitation from my father. A sign that there is more to our world and existence than we know. Then my husband saw the cardinal, and I saw him again sitting in a tree the next day. I felt the presence of my father. My father who died in August 2006. My father who I have been angry with because I felt he abandoned me in favor of my sister. He had Parkinson’s disease and had become mean to me. Nothing I said to him would soften him. I think he may have had dementia from the Parkinson’s and all the medication he was taking. I am learning to forgive him.

Seeing the cardinal felt like he had not abandoned me. The message I was receiving was that he will be there on the other side. The message was that he still loves me and understands that this is the hardest and and most treacherous disease, and that he sees how brave I have been. I am brave! I’m 64 years old, almost 65. No one should ever get this disease, but getting it at a younger age is particularly ruthless. It’s not like I have had the chance to complete the things I wanted to do. My daughter was in her early twenties when this started. The disease has progressed quickly. It’s unfair. (Life is not fair or equitable when it comes to Alzheimer’s either. Neil Simon, the famous playwright, died with Alzheimer’s at age 91, but he had led an incredibly productive, creative and successful long life. I was still in the middle or end of the middle, or so I thought).

I am having many physical symptoms now, and they are not related to cognition. If this disease was about how well one scores on the MOCA or State Mini Mental Exam, I would not be deemed to have it. I score 29 out of 30. I can still do many math equations and can count backwards from 100 by 7. But getting out bed and getting through each day requires support and reminders and pushing myself through each task. I literally have to find the courage to make mistakes doing the simplest things now. Like chew my food and swallow. Wash dishes. Put on my coat and zip it, making sure I have my eyeglasses on, my purse and phone and keys, and go outside and walk to my friend Ruth’s apartment. It is insane how hard things have become. So the cardinal visiting reminded me how brave I am, and I want to believe there is a spiritual dimension to all this suffering. I want to believe that my father is there and visits me.

That’s likely dementia, but how can I know for sure? Maybe there are things that science can’t explain. Why I felt his presence and connection.

*******

A trip to the library

Unbelievable really how a simple walk outside is such a big deal now. The library is a half mile away. It’s across the street from Church Square Park and a local site I would often go to with my kids and my students, and by myself. It’s a block from the school where I was the chair of the art and art history department. Today my husband suggested we go there. We passed the Episcopal church where Christmas trees are being sold in front, as they do every year. It made me realize that last year at this time my husband took me there on one of our walks. I understood by how I feel now, how my walking is affected, and how my speech is altered, that there has been significant progression in a year. It made me understand how debilitating this disease is and how much fortitude it takes to keep going. Last year we went inside and I marveled at the stained glass windows I had never seen from inside. I remembered how I felt then. There were no physical changes then that I was aware of, except for the difficulty getting out of bed and getting dressed. I was not aware that walking was difficult then. I certainly had not begun to have changes in the way I spoke. Certainly didn’t speak nonsensically or jumble up my sentences or talk to myself, instructing myself the order of steps in getting dressed and groomed. I didn’t have trouble chewing and swallowing then. We passed the sign TREES and I snapped a photo.

The library is on 5th Street. Make a left and cross Willow Ave, go past the building where my friend Zehava lives, and it’s there.

My husband suggested we go upstairs. First the steps up to the door were a challenge. Once inside he suggested we go up to the second floor. Climbing those stairs required holding the bannister and pulling myself up.

First thing we saw on the second floor was a student art exhibit from a local charter school. Looked sort of like the kind of installation I would prepare when I set up local exhibits of student work. Sadly it reminds me of what I can no longer do. I had to retire in June 2017, after pushing myself to keep going that term. I didn’t want to, but I could no longer do the work with the students, for so many reasons. I caught a glimpse of an artwork by the brother of a student I worked with privately around the time my mind started to scatter. Not a big surprise that Leo is talented and imaginative, as his sister Grace was. His detailed and funny illustration of freaks and geeks in some kind of extraterrestrial room,  goes beyond the rudimentary examples around him made by other students. I recognized his last name and the grade he is in and realized it has been 3 and 1/2 years since I recognized the symptoms of this disease. Grace was studying privately with me in July 2015, and my mind was starting to jumble then. I remember.

Then we into a large room with historical memorabilia. I saw an image by the American painter, Thomas Hart Benton, whose work I would show my students, and The Oxbow, by Thomas Cole, who was the founder of the Hudson River School of painters. I used to use The Oxbow as an example of painting landscape in deep perspective.

Anyone who knows about Hoboken history, knows that Frank Sinatra was born here and grew up here. The rest of the room is dedicated to Sinatra. Photographs of his early years line the walls, and a life size cardboard Sinatra stands in a corner. I immediately recognized Bing Crosby in the photo with Frank. The street along the Hudson River is named Sinatra Drive.

I’m realizing that my writing and photographs are becoming like a show and tell. I wonder what cognitive age this resembles. Am I like a 12 year old adult, maybe a 10 year old, by todays standards, maybe 8. I understand that this is intellectual regression. I still want to share and communicate, but I am now more limited, and it’s using the skills I still retain to show and tell. I hope it isn’t tediously boring. I’d much rather be writing imaginative stories, but my reach into the world of imagination is pretty spotty at best. I can still follow a storyline, and choose great movies and series to watch on TV.  My ability to delve into a place that is imaginative where I could express something original and creative is limited to the few dreams I still have. A recent one I remember- I was in my daughters apartment, and her boyfriend was going to take me to the subway so I could get home from Brooklyn. I told him that I didn’t think I should take the subway, and to call an Uber. As we were walking to the door, I looked into the bedroom where my daughter was sitting on the bed. Her boyfriend dressed differently was walking into the bedroom. He was both walking me to the door, and also walking into the bedroom. There was TWO of him. I have read that in Lewy bodies dementia, people sometimes see two of the same person– but in a dream!!!? Maybe I have Lewy bodies too.

I think my frontal lobes are damaged. I am not able to think of a plot, details, a storyline. I used to. I used to write stories all the time. I’ve read that these come from the frontal lobes. The creative sweet spot. My sweet spot is gone.

We walked down to the room that contains masses of CD’s and DVD’s. My husband went to the front desk to renew his library card, at my suggestion. I looked at covers of the CD’s and spotted one by Sade. I snapped a photo of it and texted it to my daughter, saying remember her? She wrote back, Of course. Soundtrack of my childhood. 

I wanted to go home by this point. The library was hot and stuffy. We stepped outside and I snapped a photo of the park across the street. This is the park I would so effortlessly ride my bike through on route to the PATH train, where I’d lock it up and take the train. The park where I’d accompany students on their breaks. The park where Marlon Brando and Eva Marie Saint shot their famous love scene in the movie, On The Waterfront. 

I’d walk through it every day for many years. Now just seeing it is a kind of Alzheimer’s Disneyland for me, as I stay inside so much.

We walked along Park Avenue and passed the school where I used teach. The lights were on the fourth floor art room where I used to teach. I have not heard from any of the faculty I was friends with for so many years. I assume they must know I have Alzheimer’s, since I did tell one colleague when I resigned. I’ve contemplated writing to some of them and telling them, but what would they say? So sorry to hear that. Is there anything I can do? Well… it would be nice to see your face again. Maybe you can stop by when I’m finally dressed, groomed and ready, some afternoon? I think it might shock them, and what happens if I start babbling something incoherent? That would be extremely embarrassing. And of course, I would be hurt if they didn’t offer to come and see me. A woman whose sons were my students, and who I recommended to the board of trustees of the school, had a mom who had later onset Alzheimer’s. I’ve considered writing to her, and asking her to write something about Alzheimer’s and my years of dedicated service as a great teacher and chair of the department. Make people aware of this disease. De – stigmatize it.  But I know better, despite putting this on my to-do list every day. As soon as people hear the word Alzheimer’s, it strikes fear into their hearts and minds. Almost everyone I’ve told has disappeared. Even people who used to visit from the synagogue have taken a hike. So I have disappeared and am invisible to these people I knew and worked with for twenty years. Is this withdrawal or caution?

Word Salad is what I call the drawing. Not one of my studied and pretty drawings, but rather an illustration of what things have been like for me. I’ve been finding myself coming out with sentences that have no reference to reality now. I notice that it happens when I am very stressed. I wrote down that I heard myself say, “for self of it”. What the hell does that mean? It is obviously meaningless. Lots of what I am saying now is meaningless babble. I even find myself looking in the mirror and saying things I don’t understand. Things like, ” goings of it, when there is some places to do”, is something I wrote down when I heard myself say it, and “that’s how it is, when it happens it gets there” is another one I wrote down today. These are word jumbles and I don’t understand why this happens, except to see that it means I am progressing. I looked up Wiernicke’s aphasia.  https://www.youtube.com/watch?v=dKTdMV6cOZw&list=LLyHxyM2AocWtt8XAIctnx9g&index=45 but this is not like that. What’s been happening with me is the emergence of nonsensical sentences and words strung together. It’s very scary when this happens, but writing it down helps me catch myself and possibly prevent it from spinning out of control. This seems to happen when  my brain switches off and my mind becomes scattered. I know this means I am losing my grip. It means and shows progression. It means when I am trying to express a thought the synapses are so jumbled or not there at all, that when I speak the connections are not connecting. Or that there is the need to express myself. I am now afraid to be around people who are not familiar, lest I start speaking this gibberish unexpectedly. It comes out of no where. It’s the awareness that this is happening that is so puzzling. How can I know this is happening and yet not be able to control it? Or how do I become aware I am doing this after the fact? It’s like there is a part (or parts) of my brain that are aware and a part (or parts) that still do it anyway. It’s like one hand not knowing what the other is doing. Strange. But nothing in AD is surprising. It’s a progressive brain disorder and it is terminal. Yet one can live with it for years, and become mute. Is this gibberish a step on the path to becoming mute? Usually I am  conversant with a little aphasia, and having problems remembering names and words. But this is obviously quite different from that. That’s one reason I continue to write. I surmise that if I can write, I will continue to be able to speak. Lord please take me before I can’t write or speak any longer. That is my prayer. I was such an eloquent speaker. I do not want to live and babble or be mute. Or have a three word vocabulary. No!

*******

I still know the order of the alphabet A B C D E F G H I J K L M N O P Q R S T U V W X Y Z. These letters are in the drawing. Dancing around my head (yes, that’s supposed to be me, with a blue face that’s supposed to represent water, and land forms on my face which are supposed to represent continents). Everything is quite literal. Alzheimer’s planet. Word salad because the letters are swirling around and out of my head. I still recognize when a word is misspelled (usually, well actually the computer underlines words which aren’t spelled correctly, so there’s an assist). I can spell WORLD backwards, which is one of the questions on the Mini Mental Exam administered by the neurologists D L R O W.

W O R L D.

I have Alzheimer’s disease, and in fact am in the moderate stages. I am experiencing the physical manifestations of the disease. Alzheimer’s is a physical disease that progresses and affects all parts of physical and cognitive functions.

Today it was extremely hard to walk down the spiral stairs. My husband stood behind me, and I heard a deep sigh, as he waited for me for to get started on my descent. Once I get going, I can do it, but starting is what is hard. My brain doesn’t click into the start mode. I have to wait for it to turn on and then I can go. Walk. Ambulate. But once I get downstairs, I sit, and can’t get going again until I look at the list. The damned list that I refer to in order to function and keep going.

The list tells me what to do and I do this everyday. The list that reminds me to eat. First I drink tea, and then eat a banana. I take 2 paper towels and place one on my lap, and the other beside me. I peel the banana as I eat it and put the peel on the paper towel. Then throw the peel in the garbage. Take the paper towels over to kitchen island and take my thyroid medication. Then I put the tea on the counter beside the stove top near the kettle. I take the white cup from the cabinet and pour some coffee. If my husband is home it’s still hot. If he’s not, it’s cool. I put cream in the coffee, which I take out of the fridge, and put the cup in the microwave for 50 seconds. Then I take the coffee and sit again, and play Lumosity on my iPhone as I drink the coffee. It’s hard to tear myself away from the Lumosity games, but I have to if I am going to get dressed and eat breakfast (which is often around the time normal people eat lunch). This is my routine. It’s how I get started every day. I wash the coffee cup and dry it and put it back into the cabinet. (I have become rigid and have to do these things in the same order every day). Then the anxiety about dressing myself begins. I’ve already put the clothing I’m going to wear on a hanger the night before bed.  The clothes are in the bathroom, hanging on a hook. I go there and place a towel on the floor. If I am able to shower it’s there to soak up the water when I emerge. Showering is hard. The order of what part of my body to clean first, second, third…is what I have to think about. I question myself. Did I forget to clean _____________? I lean on the tile wall of the shower, because my balance is off. I often find myself washing parts of my body again and again, because I forget what I just washed. Washing my curly hair is the biggest challenge of all.  I realized I had put conditioner on my hair instead of shampoo and shampoo after the conditioner. This is the wrong order, so I repeated it in the right order. HAIRS! Curly hairs all over my body and on my hands. My hair falls out. Somehow I got the shampoo and conditioning done, and scrubbed my body clean. I stepped  out of the shower and grabbed a large towel to dry my hair, and another to dry my body. I am usually freezing by this point, and try to dry myself as quickly and thoroughly as I can. Of course, I still want to appear groomed. I want to maintain my dignity. I don’t want to smell bad. But the steps in taking care of grooming, showering, dressing, brushing my teeth, getting my hair to look nice, are the hardest part of my routine. I’m not sure if describing this can convey why this is so difficult to do. Once dressed and teeth are brushed and I’m reasonably groomed, I go over to the patio door and open the shades, then walk over to the bench and pick up my pajamas which I folded and left there before I got dressed,. I take them along with the hanger I hang my clothes on for everyday, upstairs, and put the hanger on the hook in the bedroom and put the pajamas back in the drawer where I will know they will be when I get ready for bed. This is repetition, repetition in Alzheimer’s in order to maintain a routine and be functional and dressed and able to go outside and be around people. I certainly couldn’t go outside in my bathrobe and pajamas!

Then there is eating. Chewing and swallowing are becoming harder to do. My husband leaves cut fruit in a bowl, which I eat with a spoon. He leaves me a hard-boiled egg which I slice with an egg slicer, and a small cup of yogurt. He leaves me a fruit smoothie drink that I pour, before I get started eating. I usually take these out of the fridge before I get dressed so they are there when I sit down to eat. It’s a process for me. Food in my mouth feels weird. The texture of each food and how to chew each food and swallow each food is different. Cut fruit and berries are doable, but chewing the egg and swallowing requires sips of the drink. Even yogurt is a challenge to swallow. When I finish eating, I take Rivastigmine (the medication prescribed by the neurologist), and chew a baby aspirin (the neurologist says this is to prevent strokes). I wash my dishes and the cup, and place them on the dish rack.

Then the question comes up. What’s next? Sometimes I call Ruth. I tell her I got through my routine and ask her how she feels. Often we plan to see each other, with her usually coming over, but some days I am still able to make it to her apartment which is a half mile away.

Then I have to do something, to occupy myself. It’s usually more Lumosity, or the New York Times mini crossword puzzle. Yes the mini crossword puzzle. I will look at the New York Times on my iPhone. Orient myself to what day it is, and what is happening in the world. It’s cold now and going out is getting harder. I try to walk outside a bit. I push myself to get my sweater and down coat on, and go to the park, and walk around a few times.

Yes, this is my life with Alzheimer’s now. This is how I function. It’s a very limited existence, and I hate it. I hate this disease and what it has and is doing to me. I am not the person I was who would go and do and travel far and wide and functioned well. I am regressing and declining and watching myself as this happens. I am fully aware of all it. Of course, I am depressed. Severely depressed. But I push on and somehow manage to get through each day.

Thanksgiving

Thanksgiving Day is here and we’ve been invited to my daughter-in-laws mother and step father’s home. Our daughter is coming too. She usually goes to her boyfriend’s family, but she wants to see the new twin babies and Ellie, who just turned three. My son and his wife and the babies, and the grandparents and my husband and daughter will be there. Who else? Definitely my daughter-in-laws brother. Probably my daughter-in-laws grandfather and his girlfriend. Possibly her uncle and his children, the twins and their older sister. Maybe the Russian cousin too. Possibly some friends who are neighbors. Russians go all out at parties and love to celebrate, so I have no idea how big the party will be. Hopefully it will be more of just the immediate family.  I am nervous about being there. There won’t be a safe room for me to get away to. I will be seated at the dining table and I’m concerned about chewing and swallowing the food. I have to make sure there is a drink so I don’t choke. There will be Russian foods along with the traditional turkey with vegetables. Russian foods like crepes with salmon caviar and a pink jelled aspic that I think is called Kholodets. Usually things like Sprite or Pepsi are offered. There is always vodka offered which I can’t drink. I will ask for juice, and ask my husband to pour it. I will be careful and eat slowly. There may be people there who I haven’t seen for a year and who don’t know I have Alzheimer’s. I do not want to broadcast it. I will try to manage myself as best I can. An email friend, whose husband was diagnosed with Alzheimer’s wrote me and said “there is nothing to be ashamed for, it is just a disease, and for every illness one has to make certain accommodations”.

A memory of a previous Thanksgiving dinner: It was Thanksgiving Day 2007. I invited my daughter’s friend David, his mom and sister, to our home. I prepared the feast. David’s mom was a daughter of Holocaust survivors. like me. She had taken me to several group meetings for 2nd generation adults, and we had become friends. David used to hang out with my daughter, and had been my art student when he was in the 8th grade. His mom was a single parent. We had a good time and David spent some time hanging out with my daughter. That summer I became an American Fulbright to Poland and my daughter joined me there. As we sat in our former communist bloc apartment in Lodz on December 23, 2007, a call came in on her phone. It was my daughter’s friend  friend Mey. She told her that David had fallen from a roof. He was at a party and the kids went up to the roof. He lost his balance and fell, and died. I thought about the fact that he had been in our home only months before. I thought about his mother. His sister. I am thinking about him now. He was only 17 when he died. It is eleven years later. I have been diagnosed with Alzheimer’s and have progressed markedly in 3 years (2 years since the diagnosis). One never knows what is in store in one’s life. One minute you’re here and the next – poof – gone. I’ve lived 47 years longer than David. I had a pretty good life until I got this horrible disease. David’s life was so brief. I used to help him with his artwork, and was mesmerized by his large light blue eyes. I give thanks for having met him, this shooting star. What happened to him is tragic. I have had a pretty good run, but this has got to be one of the worst possible ways to go. But I’m still here and I will get to see my grand babies at Thanksgiving. I’ll eat slowly and carefully. I will feel blessed that I made it this far.

 

A few more memories before I sign off. Today I took a walk on Clinton Street. I passed a demolished house in a beginner construction site where a low building stood. It will obviously be another condo building. The cookie cutter buildings are all over the city, crammed in, side to side. My daughter had a friend who lived in this little building many years ago, whose name was Jordan who had a little brother whose name I don’t remember. Her parents were Susan and Stuart. I remember that Susan loved flowers, and always had fresh flowers in vases. I would go over there frequently with my daughter and the kids had a lot of fun together. They moved to the New Jersey suburbs and the friendships didn’t last.

Right next door is another building that used to house huge artists lofts. I was friends with these artists who ran a special program called Four Walls. Some of the artists who used to present their work and discuss it at Four Walls have become famous and are showing their work in museums all over the world. Some are still painting, but their careers really never took off. It’s the luck of the draw.

Michelle Araujo                                      Untitled                                         Oil, oil stick and tape

Is it talent? Luck? Perseverance? Personality? I don’t know. Maybe all of these, or maybe none of these. Who decides?

I still have access to these memories. When I look at the present, I see the past. But the past is always disappearing, and I am disappearing along with it. Just like that building which is now a razed construction site.

The future: The house we live in will likely be sold and also become a construction site where a tall building with condos or apartments will be put up. Others will live on the footprint of this building and we will be gone. Not even a Wikipedia page to note the story of what happened here. That is what will happen, and the memories of what happened in this house will all be gone. That is why I write. To remember and plant these thoughts and imprint these memories – somewhere, before they disappear forever.

How will you remember me?

This is my drawing of Michael and Sara, my twin grand babies, born on October 11.

The beginning…the middle…

My daughter-in-law has a knack for mothering. Her babies are content. She feeds them on schedule and they are thriving. They sleep and eat and cry a little. She’s a great mom. She was born in Russia and came to this country as a baby. So many women from Eastern Europe particularly Russia are bred to be strong. In her case, she is not only strong, but shrewd and intelligent. She is a lawyer (on a 6 month maternity leave), a wife and now she’s a mom of 3 little ones – very little ones. My son is also a great dad. At this point he is more involved with Ellie, their 3 year old, because his wife is nursing the twins. Most of her energy goes into that. He makes sure Ellie is taken care of and is happy and fed. He also makes sure that his wife naps and has energy to keep going. He works as a lawyer and also teaches piano students on Sunday, so his schedule is packed. She is the leader as far as the babies go. He is her assistant with the twins. They have a good deal of help from my daughter in law’s step father, who lives nearby and is retired. Her mom is the breadwinner and has a high pressure corporate job. Lots of role reversal and it works. I only wish I weren’t “retired” because of Alzheimer’s. I would have loved to be more hands on. A more integral part. Alzheimer’s prohibits me from being more hands on.

I gazed at the twins and wondered. What does it feel like to be newly alive? To just be. To be at the beginning. To have one’s needs taken care of. To be wanted. For my twin grand babies, life is good. They sleep and eat and grow. Their every need is attended to. Their start in life is cushioned. I know this is not the case for all babies. These babies are blessed with a loving mom and dad and a happy little sister. Swaddled, warm and fed, they feel secure. This is their experience, their beginning. The way it should be.

I was a formula fed baby and my mother needed my father’s help preparing the formula. I imagine that my mother felt very lost with her new baby (me) in a new country in which she hardly spoke English. A displaced Jew after the Holocaust, a displaced soul, a stranger in a strange land. She didn’t have a support system and I daresay I don’t think that she really knew how to mother. Had I been born in Russia, there would have been her sisters to help her, but in New York in the mid fifties, she was quite alone, with only my dad who was tired and overworked, and usually stuffing down his anger which would emerge periodically in fits of rage. Sure, she knew that I needed to be warm and to be changed and fed. But I do not remember my mother ever playing with me or providing the sense that she was taking care of me. She was depressed. There was no warmth, no feeling that this was my mommy. For me she was there and not there, simultaneously. I created my own world in order to fill a vacuum. A fantasy world. I know I have a disease that impairs memory, but I do not remember my mother ever hugging me. She must have held me as a baby. There are photographs attesting to that. But I do not remember her touch. I do remember her chicken soup though. Love was in her chicken soup. So there was that. I was told that my sister was sent away to a farm when I was born, because my father thought it would be too much for my mother to deal with both of us. Not sure how long she was there, but years later my sister told me how angry she was, and how she gave her meat to the dogs under the table because she didn’t want to eat the farmer’s wife’s food. My sister was angry that she was sent away when I was born. That made her angry with me for being born. How stupid of my parents to do such a thing. They deprived her of bonding with me and created hostility when what they should have been done is introduce us, and give her a special role as my big sister. She’s seven years older than me. How damaging their actions were. How ill equipped they were to have a second child.

I remember the famous experiments that psychologist Harry Harlow conducted in the 1950s on maternal deprivation in rhesus monkeys. I used to think about these experiments in relation to my mother. Harlow himself repeatedly compared his experimental subjects to children and press reports universally treated his findings as major statements about love and development in human beings. He separated infant monkeys from their mothers a few hours after birth, then arranged for the young animals to be “raised” by two kinds of surrogate monkey mother machines, both equipped to dispense milk. One mother was made out of bare wire mesh. The other was a wire mother covered with soft terry cloth. Harlow’s first observation was that monkeys who had a choice of mothers spent far more time clinging to the terry cloth surrogates, even when their physical nourishment came from bottles mounted on the bare wire mothers. When he separated the infants into two groups and gave them no choice between the two types of mothers, all the monkeys drank equal amounts and grew physically at the same rate. But the similarities ended there. Monkeys who had soft, tactile contact with their terry cloth mothers behaved quite differently than monkeys whose mothers were made out of cold, hard wire. Harlow hypothesized that members of the first group benefitted from a psychological resource—emotional attachment—unavailable to members of the second. By providing reassurance and security to infants, cuddling kept normal development on track. When I read about the experiment years ago, I thought of my mother. I thought of myself as a deprived rhesus monkey given a choice between a mother made of bare wire mesh or terrycloth. Of course this is a far fetched analogy, but the fact that I thought about this experiment in reference to my own early life speaks volumes about what growing up must have felt like for me with a mom who did not bond with me. As an adult I realized the problem was deeper than this. My parents relationship was dysfunctional. My father would at turns be charming and then become a brute, physically abusive and full of violent rage. How could my mother have felt safe with such a man? I tortured myself for years thinking it was all my fault. I spent many years in therapy, and thought I had resolved all of this. For a time I did resolve it by loving my kids and giving them the attention and nurturing I never got. But what I realize is that I needed my kids more than they needed me. I needed my husband more than he needed me. I ended up alone. I became very lonely, I turned inward, and depression and anxiety went unabated. Just at the time my husband returned home after living apart for nine years; after I was the one who kept the ship afloat, endured so many hardships alone, I became ill. The illness which began as a serious relapse of depression and anxiety, turned into Alzheimer’s.

This is my attempt to make sense of this illness. I was not emotionally or physically resilient enough to keep this disease at bay. With me emotional illness turned into cognitive decline. Depression is a neurological illness and in my case it led to Alzheimer’s. Medications that helped me  temporarily, ended up impairing my brain and body. I was always looking for help, ways to be stronger. But depression kept coming back.

New York Times: Does Depression Contribute to Dementia by Judith Graham https://newoldage.blogs.nytimes.com/2013/05/01/does-depression-contribute-to-dementia/

My daughter in law and son have a strong support system and are both competent and successful. They are not prone to depression. At least I hope not. Their lives are well orchestrated, even with the huge change that having twins and a 3 year old and major responsibilities entails. That is a blessing. That is a positive.

Their sister, Ellie, is happily back to her world of play and exploration after the mild shock of learning she will now be sharing her world with a new baby brother and sister. She’s resilient, and has been showered with love and attention. Yet being 3 and having to learn to share her parents attention so suddenly is an adjustment for her. While she’s still at the beginning she has crossed the start line. Is well on her way. Can count to ten, can run and climb and feed herself now. Can go to the bathroom alone. Doesn’t even tell anyone when she is going. Soon she’ll be riding a bicycle. She was part of her new siblings lives from the start. She is joyful and emotive.  I love her, her hearty laugh and exuberant being, her beaming laughter and the way her dimples deepen like commas in her cheeks, when she smiles.

The Middle

How I wish I were not ill with this debilitating disease. I wanted to be the hip grandma. who would teach them about art and fashion, and would discuss books and philosophy with them. I wanted to introduce them to film and theater, museums, and travel with them. These things will not come to pass. For me now, at this stage in this treacherous disease, I am lucky if I can get outside for a walk. On Sunday, I walked 1.2 miles with my husband. On Saturday,  I pushed harder and walked 2.7 miles because I pushed myself to go to Ruth’s, who hasn’t been well. Today I did not go out at all. The app on my phone says I walked .24 of a mile. I am lucky that I can still dress myself. Today my husband insisted I shower. I pushed hard to do that, forgetting what to wash first, second, third, freezing when I emerged, not knowing whether to dry my hair first or my body first. It got done. Stoically I made it through that part of the routine and checked it off on the list. Alzheimer’s is a humiliating disease. Anyone who really knows someone who has it knows this.

___________

At this point, I can do no more than observe, be very careful when I am given permission to hold the newborns. Play with Ellie. I know how much she needs one on one attention. I feel pretty useless as a grandma who has a dementing illness. I can’t cook a casserole and bring it over. I can’t go shopping for presents. It’s odd because it’s usually the children who complain about their mother who has Alzheimer’s not being able to be a normal mom or grandma. It’s my awareness of my progressive demise that makes this so very hard. Knowing that I am not able to be what I imagined I would be. A normal mom and grandma – albeit a little neurotic and eccentric, the artist who stood out because she was different in a good way.

I’ve been fortunate to see the twins twice since their birth, and see Ellie for her third birthday. My husband drove there two weeks ago, on Sunday Oct 21 and last Sunday Oct  28, for Ellie’s birthday.  My daughter in law bought a banana bread as her birthday cake from Trader Joe’s and Ellie was delighted to blow out the candles. It was a far cry from her second birthday party which was a regal event, with a cake that looked like a whipped cream version of Versailles, attended by many relatives and friends, hosted by her mom at her parents home. Now the twins were sleeping upstairs after their umpteenth breast feeding, and the celebration was Ellie standing on a chair and blowing out the candles. Our lovely daughter and her boyfriend were there too. They had taken the bus from Brooklyn and arrived at our home, and we drove to our son’s home in suburban New Jersey. At my request, I sat in the backseat with my daughter’s boyfriend, and she sat in the passenger seat next to her dad, who was driving.

There are so many physical ramifications to the progression of this disease. Moving my body is getting harder. Coordinating movement and the step by step actions of going from one activity to the next requires a lot of me. Everything requires thought and preparation and my family gets impatient. Getting into the back seat, moving over to sit behind my husband who was driving, allowing my daughter’s boyfriend to sit behind my daughter, because he’s taller and needed leg room required coordination. At least I could still do it. I guess that’s a blessing.

A Still Alice moment:

I went upstairs for the second time. The first was when my daughter in law went to Trader Joe’s to get the banana bread. My son came upstairs with me after I told him I wanted to see the twins. Walking up the stairs was different than before. Harder to negotiate the steps. I held on to the banister and felt like I was walking sideways. We walked to the master bedroom where the twins were in their individual bassinets near their bed, alongside the window (and where I’m told the radiators are located to keep them warm). They were sleeping, of course. I asked my son to show me the bedroom where the cribs were set up. I still know the layout of the house and assumed that  the cribs were in the room across from the stairs. I was right. My son opened the door and the room was all set up with two identical cribs and a changing table and many items for their needs. We went downstairs. A little while later I wanted to see the twins again, and went upstairs by myself. I peeked at the sleeping twins again. I wanted to look at the room where the cribs were set up, again. I went down the hall and turned left, and opened the door to what I thought was that room. Instead of the twins room, I opened the door to the linen closet and was shocked to see that it wasn’t the bedroom I had been shown by my son, around 15 minutes earlier. I thought about the scene in the film, Still Alice, when Alice (played by Julianne Moore), goes inside her beach house to go to the bathroom, and can’t find it. She opens doors, unable to find the bathroom. Frantic, she ends up wetting herself. While the incident was different, and I did not have to find the bathroom, it is similar. It is the disorientation. Spatial disorientation. I stood in front of the open linen closet, and knew that this meant progression. I said nothing about it when I returned downstairs and sat on the couch.

The shooting at the Tree of Life synagogue in Pittsburgh…

While I quietly fade and change forgetting the date and the time, melancholic and anxious, the world outside my door is in disarray, and horrible violence is committed daily and reported in the news. Last week, on Oct. 27-  11 people were shot and murdered in a synagogue in a suburban community in Pittsburgh called Squirrel Hill. The perpetrator was a 46 year old man, a white supremacist who had posted anti-Semitic comments against the Hebrew Immigrant Aid Society. He wrote on Gab, an online social network, shortly before the attack, “HIAS likes to bring invaders in that kill our people. I can’t sit by and watch my people get slaughtered. Screw your optics. I’m going in”. The shooting was the deadliest attack on the Jewish community in the United States in history.

It’s scary. I’m aware that this is about Jews and anti-Semitism, but it’s about more than that too. It’s the hatred for the other, anyone who is a different color or has a different sexual preference, or a religion that predates Christianity or… As a society we are at risk of becoming inured to a particular kind of violence. Mass shootings and bombings are occurring with increasing frequency.  From schools and houses of worship to restaurants and nightclubs, this kind of violence is now so frequent that it is no longer surprising. That it could happen in Squirrel Hill, the vibrant center of Pittsburgh’s Jewish community and a neighborhood fully integrated with the rest of the city, is a signal that it could happen anywhere.

The United Synagogue of Hoboken mourned the victims of the mass shooting in a two hour vigil last Monday with speakers from many denominations represented. I couldn’t attend that one. I have to be careful what I expose myself to and it would have been too much for me, with crowds of people attending. I wanted to go but I couldn’t and ended up going to Ruth’s instead. I did go on Friday night for the Shabbat service in which the victims were remembered. The photograph I took is blurry. Somehow this seems apropos It mirrors my recent state of mind.

Halloween

This is a dozy community, full of children and young families. It’s the place I’ve lived in for forty years, raised my children here, and was a devoted teacher and chair of the art and art history department for 20 years. It’s the place where I was well and active and engaged and resilient. It’s the place where I developed Alzheimer’s. I am in the middle stages of this atrocious disease. Or maybe I’m in the late stages with a smattering of early stage. I do not really believe in the stages anyway. I only know that Alzheimer’s is progression, and I have progressed. My brain and physical life have changed and is changing. I have tried to fight this horrible disease, but it is not a battle I can win. What I can still do is write about it and shed light on what it’s like to live with it. I think this is  valuable for posterity. It humanizes this disease. Someday I pray no one gets this disease. Certainly not during the prime of their lives as happened to me, when I was working and had goals and ambition and the desire to make films and keep teaching. My words and images give you, the reader, an idea of what it is like to live with this affliction. How it limits and how much effort it takes to thwart the limitations and keep going.

Here are photographs from Halloween taken in this dozy city. Little children – at the beginning of their lives, in silly costumes in the streets and the park. I was afraid that Halloween would be too much for me and that the many decorations on houses would spook me. In some instances they did, such as passing a house which had scary sounds and effects emanating from ghouls, which startled me. In most cases, though, I saw through it and nothing was too hyperreal. The displays looked silly and benign. The little children in costumes looked confused about why they were being paraded around dressed in weird costumes.

The world looks different to a person with Alzheimer’s. It didn’t use to look like this to me. I was consumed with my own busy life. I did not react to everything I saw. Things did not pop out at me with so much visual and auditory force as they do now.

I am not sure if the photographs can impart how preposterous the world looks to me, but maybe their inclusion here will.

The Care Combine – https://carecombine.org/

Alan Miles a unique caregiver to his wife Lena, envisions The Bine as a network of day centres, where people with dementia will meet during working hours for up to seven days a week. Well supported by care professionals and trained volunteers, they will be engaged in a number of meaningful, purposeful activities, many of them serving the interests of the wider local community.
Alan Miles and his wife Lena live in the UK, and Lena has Alzheimer’s.

Alan has read my blog and recently published a post titled Three Dementia Fighters in which my blog Suddenly Mad: My Voyage Through Early Alzheimer’s is included. Profiled are Wendy Mitchell who has a best selling book, Somebody I Used to Know and writes a daily blog Which Me Am I Today https://whichmeamitoday.wordpress.com/blog/. Also profiled is Howard Gordon, a dementia and human rights activist who was diagnosed with Alzheimer’s and Fronto Temperol Dementia in 2017. His blog, When the Fog Lifts, is a wealth of information on advocacy, support, rants and musings of his life since his diagnosis https://whenthefoglifts.blog/

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I’m nearing the edge of the Lunatic Fringe for today. It is definitely time to write the list for tomorrow and get the clothes set up for tomorrow. This hopefully guarantees that I will be able to get the day started and leads to my continued independence. Hubby won’t be home tomorrow and if I am to have any energy for Krishna who arrives to do yoga in the afternoon, I must get to bed for however many hours my brain will allow to sleep and restore my energy.

I used to know a man named Leon who often quoted Samuel Pepys https://en.wikiquote.org/wiki/Samuel_Pepys, who is best remembered for his diary, a unique historical source and human document, written in the 1660’s in which he ended every entry with and so to bed…

 

 

 

My son’s wife gave birth to TWINS on Thursday, October 11, 2018. They are fraternal twins, and the boy is named Michael Benjamin, and the girl is Sarah Isabel. It’s a momentous event in the life of this family, but I have yet to see them. My son has sent a few photos, and this enabled me to do the drawing. I am aware that life is about generations, and that my time is passing quickly now. Alzheimer’s is speeding up the process. I will not know these twins as I would have if I were well. They will not know me. They will hear stories from their parents and maybe they will see pictures. I can’t be the normal grandma I would have been if this disease hadn’t come for me. I know that my daughter in law is a great mother, and my son is a great husband and dad. I trust that theirs will be a good life raising their children. There is solace for me in this. The babies were born healthy. Michael was 5.11 lbs and Sarah was 5.6 lbs. Their sister, Eleanor, will be three years old in a few days. Now they are a family of five.

Generations

Michael is named after my late father. Sarah is named after my daughter-in-law’s grandmother, who died last year. Ashkenazi Jews traditionally name children after relatives who’ve passed on as a way to keep the memory alive and to inspire the namesake to live up to their predecessor’s better qualities. My late father was a strong man, a survivor after all the members of his family were murdered in the Holocaust. He lived until almost 91 years of age. At 53 he had a major heart attack and he retired. My parents moved to Florida, where he made a full recovery. In his mid 70’s he underwent double heart bypass surgery. In his mid 80’s he developed Parkinson’s disease. He was a tough guy. It is this strength, this toughness, I am hoping that my twin grandson is imbued with and why I am glad he was given this name in remembrance of his great grandfather who has been gone since 2006. This will to live.

My daughter-in-law loved her grandmother, Sarah. She lived to be 92 or 93 (not sure which). Another very strong person, and also kind and gentle. She was born in Russia and emigrated to the US in the 1980’s. I met her a few times, and saw her last year at my granddaughter, Eleanor’s, second birthday party. She had been ill a long time with colon cancer, and her son, my daughter-in-law’s father, took her to the Boston area where she entered hospice and soon died. I was told her husband, my daughter-in-law’s grandfather, had Alzheimer’s in his 70’s. He used to go out and walk and get lost. He became incontinent and his son, my daughter-in-law’s father (who is divorced from her mother since she was a baby) placed him in a nursing home in Massachusetts, near where he lives. He died soon after.

My own mother died at the age of 87 with dementia and pneumonia. She was in late stage after a dose of Haldol caused a stroke, but she had been declining for many years, and I now believe she had older age Alzheimer’s. My father tried to take care of her but couldn’t at the end. He moved from Florida to my sister’s home  in New York, and lived well for another five years. He never saw my mother again. He left her in the nursing home in Florida.

My daughter-in-law’s maternal grandmother died at the age of 60 right in front of her when she was 12 from a heart attack. Another Russian immigrant, but unlike Sarah, her paternal grandmother, her maternal grandmother was not so strong. My daughter-in-law’s maternal grandfather is now 80, and lives with his girlfriend who is around 75, both Russian emigrees. He recently had surgery for lung cancer but you would never know it. He is still strong and happy. He has had several surgeries, and walks and talks, and dances,  and last year traveled with his girlfriend to China. My kid’s paternal grandmother lived to be 94, married again after her first husband died (my husband’s father and my kid’s grandfather, although our daughter never knew him- he died before she was born). Her name was Edith and she was a very bright and classy lady and had a very long and vibrant life. Although she had been diagnosed with Alzheimer’s, she was already past 90, and the forgetting was mild. It was more of a physical decline than a mental one. Her daughter, my husband’s sister, Carol, took care of her, with the help of home health aides, until the end. Edith’s first husband (my husband’s father) dropped dead of a heart attack at 70 on route to buy the New York Times. Edith got to live and enjoy life for a long time after that. Her second husband lived to be 96. He keeled over in their kitchen while eating the sandwich she prepared for him every day for lunch. She was in the other room and walked in and he was on the floor. His first wife, the mother of their two daughters, died in her early 70’s of renal failure. She loved him, my mother-in-law told me, and left him her pension and an insurance policy. I wish I had been smart enough to buy insurance when I was well so I could leave something to my husband.

Is life a crapshoot? A risky or uncertain matter?

When my house was flooded by Hurricane Sandy in 2012, I heard about a teenage girl near here who was electrocuted when she stepped out of her home into the flooded street. I thought then that I was safe. I made it through that time. We managed somehow to totally renovate our ruined home, which was one of the hardest hit in this city. I continued to work and teach, write, socialize, make art. Our daughter graduated from college, moved to Brooklyn and started a career.  Our son became a lawyer, got married, bought a house, started a family. Six years later I am unemployed, unable to do much at all, progressed in Alzheimer’s, in this house that we lovingly renovated.

Life is strange.

I am 64 and will be 65 at the end of March. I am no longer strong, like I used to be. I have Alzheimer’s that has progressed rapidly.  It’s a struggle to get through each day now. Getting dressed, groomed, showering and washing my hair, are major undertakings that I manage to still do but with increasing difficulty. Going out for a walk now that the weather is getting colder, is a major undertaking. I rarely can do this alone now. Simply putting on my jacket and having my bag and phone with me, crossing the street, and walking what amounted to 1.5 miles/ 3,672 steps/ 5 floors, as calibrated on the health app on my iPhone, is the only exercise I was able to do the other day. It was Ruth who took me to the park to walk. She with her walker, and me without a walker. Three times around the park path. Four years ago I was weight training and could bench press over a hundred lbs. I would ride my bicycle all over this small city and over to the adjoining cities. I had just returned from Israel where I lectured at Jerusalem University. Now I am in decline.

Life and death. Some get to go on and on and go from strength to strength, until they get very old, and then slowly decline. Other’s fall apart early or earlier. As a teacher, I have known very young people who have died in their teens and twenties. One student was murdered. Another fell off a roof at a party and died. He was 17. One OD’d from alcohol and pills. A month ago my daughter told me a former student of mine OD’d at the age of 28. He had a great job and it looked like he was successful.

One never knows what is around the corner.

I used to count my blessings. I now count days. I love my husband and kids. I want them to know how much I love them. I am not at all who I was. I am different, changed. I am sorry for this but I want them to know the changes are because of this damned disease Alzheimer’s.

Writing has become increasingly difficult. But I push myself to do this now because being able to write means I can still express myself. As my son’s world expands, my world contracts. This disease is taking me away. It is really hard work to remain in the moment. It is really hard work to keep going. To do the simplest of things. Get out of bed and go through the routine through getting dressed. Eating and swallowing is getting harder. Always the list to keep me on track and refer to. The list I write every night before going to bed, before going upstairs to set the clothes on the hanger, so that I will have them ready for the next day. The list that I copy over and never complete.

The disease is well progressed now. I am still able to speak but am becoming more and more housebound. The truth is that I become agitated now just going out of the house, and yet I hate being housebound. On Tuesday my yoga teacher, Krishna, came here and after our yoga session (which gets me to move at least, because I am usually sitting), I wanted to get outside, and he walked around the block with me. I saw Franky, the superintendent who lives next door, and said hello. For a moment I felt normal, or at least I know that it appeared to Franky, that I was normal. But I’m not. I know that I am not.

Delusions/ Allusions ? Who knows?  

My life has been pretty damned strange. My crazy youth. My crazy life. I didn’t know I was crazy. Now I look back and see that I was nuts from an early age.

My mother did not love me and was withdrawn from me by the time I was a teenager. She didn’t develop herself. She was a little Russian Jew who came to the US after the Holocaust. She never had big dreams for herself. She escaped Russia with my father. If not for him, she would have remained there. Everything was driven by my father, who was himself overworked and didn’t have the ability to be a gentle nurturing parent. She worked in the little shop that manufactured pot cleaners that my father developed as a sideline to make extra money. It was a dirty noisy little place. There was never enough food and I was a very skinny kid. My sister was the beauty and valued for that. I am bombarded now by memories. Fragments. The seltzer man with his beaming white smile and brown skin who called me Minnie. Taking the hand of a stranger as a little girl when I was separated from my parents, and noticing that it wasn’t one of my parents, and running ahead and grabbing my father’s hand. They were oblivious. My late mother telling me she was going to trim my long hair when we were at the bungalow in the Catskills. I was 8. Instead she cut off most of my hair to ear length. I was horrified, and so embarrassed.

I thought I could save myself by flinging myself into the world. My older sister had gone to The High School of the Performing Arts. in New York City. Since I too showed a lot of talent as an actress, was chosen to play the leading roles in the school plays (I was Peter Pan, Dorothy in The Wizard of Oz, Elizabeth Barrett Browning),  I applied, and nailed it with my monologue, and got in. I was 14. But I was not the beauty that my sister was, and I was compared to her. I didn’t get the validation there that I had hoped for. I didn’t have the self confidence to work hard and be a good student. I fell in with the kids who smoked pot and took hallucinogenics. I was only 16. That’s when I started to look at art. Botticelli was the first I immersed myself in. That’s how I ended up in Halifax and ended up studying art. Never knew how to protect myself. My parents were oblivious to me from such a young age. They only took notice when I got into trouble but I was too much of a bother. By then it was too late. I was flying by the seat of my pants. I didn’t know how to take care of myself, but I thought I could. My boyfriend wanted me to run away with him to Halifax, Nova Scotia where he was going to study contrabass with the leading virtuoso who was teaching at Dalhousie University. I should not have listened to him. Run away from home at age 16? But I did. I packed and hid my suitcase, and left without even leaving a note for my parents. I hid out in the Catskills bungalow owned by my boyfriend’s friend. Then I stayed in an apartment in the East Village, where a young woman from a good family in Long Island was staying. She was 19 I think, and was shooting heroin. I never did that. But I smoked pot. It was 1970. Drugs were the undoing of youth. I flew to Halifax and stayed in an apartment with my boyfriend, who was enrolled to begin his music studies. He was 19 and I was 16. The Royal Canadian Mounted Police came to our door. My parents had been looking for me. They figured out that I was probably in Halifax. My boyfriend realized he could be arrested for statutory rape, as I was underage and he was over 18. He put me on a plane and sent me back to New York City. I went back to high school and entered my senior year. My parents would not speak to me at all. They were completely silent. I moved in with my sister in Queens. She was a newlywed, and I slept on the couch. That didn’t last long. She didn’t want me there. She sent me to stay with her former boyfriend, John, who raped me. My sister didn’t believe me when I told her. I returned to live with my parents, but then my father had a heart attack. I applied to colleges. I was accepted to Parsons School of Design. My father said it was too costly, out of the question. It was then that I decided to apply to The Nova Scotia College of Art & Design, and return to Halifax. It was my only option I thought. My parents moved to Florida, where my father retired and my mother trailed along. They were done with me. So off I went to Halifax and moved in with my boyfriend, and started to study art and became a printmaker. My father was on disability, and sent me the $100. a month granted as his dependent. I applied for a student loan, and immersed myself in the world of contemporary art, something I knew little about. I worked hard and became the shop assistant and a master of intaglio, lithography and screen printing (serigraphy). I studied art history, photography, animation and design. I was learning, but in so many ways, I was lost.

The crazy thing that happened that informed the rest of my life. This really happened:

When I was an art student at the college, my then boyfriend, Stephen, got involved with a cult. A tiny cult in Halifax, Nova Scotia. We lived in an apartment that I had arranged for us. I was 19 about to turn 20. The apartment was a beautiful place near the college. Upstairs lived Roz who was an art education professor at the art college. She was a blonde cherubic woman with curly blonde hair who was born Jewish and came from Montreal. Her husband, as it turned out, Donald, was a black man, who had been in prison, and from what I gathered had worked as a pimp. If I had any sense or stronger self esteem I wouldn’t have gotten involved with them. But I trusted Stephen, who was enamored with them both. I had gone to visit my parents in Florida for the winter break, and when I returned, Stephen had become a part of what I learned was a very unusual cult, spearheaded by Donald. His teaching was based on a combination of the New Testament and astrology. Donald said that each soul is imbued with the characteristics of their star sign. He proposed that the main souls were the ones based on the five pointed star. The five points stood for Love, Truth, Peace, Freedom and Justice. These corresponded to the five astrological signs – Love was Taurus, Truth = Capricorn, Peace was Aries, Freedom = Aquarius and Justice was Libra. These signs were the main players. Roz and Donald were both Taurus (Love). There are 12 astrological signs, and the other signs also had corresponding character basis he said – Sagittarius was the protector, Leo was the former king of the world but no longer, Pisces was the provider. The clincher was that Scorpio is the devil and the Cancer and Virgo were to be considered the right and left hand helpers of the Scorpio devil . These three, Scorpio, Cancer and Virgo were the evil ones. The only sign that could handle the Scorpio that was not demonic was the Gemini, having two minds and clever enough to outwit him. Donald and Roz would read from the New Testament and lead a group of us in discussion. Then one day, Roz, told me she kept opening the bible and seeing a passage about a couple who were cast out because they were materialistic. She said she thought this referred to me and Stephen.  Then Stephen found himself another girlfriend, Susan, and moved her into our apartment. She had a baby and her parents had been killed in a car accident. I was aghast. How could he do this to me? I went to Donald and asked him what to do. He said tell Stephen it’s either me or her. I ended up losing my apartment, and had no where to go. Only one friend was willing to take me in, a young man named Bradley. Distraught and dazed, I took a 6 month leave of absence from the college, and secured a job as a waitress in an upscale restaurant. I was about to re-register at the college, and wanted to find another place to live, when my future husband sauntered up Duke Street. He had been in one of my classes previously. I knew he was from New York. He told me there was a room available in the large loft he was living in, and that his roommate was Harris, who I knew, and was also from New York City. After registering to reenroll for the next semester, we went to the loft, a huge former VFW hall, and I secured a new place to live. My future husband. I had no idea that this was to be. We ended up being both lovers and roommates. I had my own room. I was in love with him, but not really his girlfriend. One day, his friend Sheila who was a flamboyant chef, and fashionista, and her boyfriend, Charlie (who was a student at the art college) decided to throw a party at our loft. For some reason, I found this too anxiety provoking, and wanted my privacy. Rather than just going into my bedroom and closing the door, I walked down Duke street to Barrington street, and got a room at a very traditional hotel called The Lord Nelson. The bellhop took me up to room 111. I layed down on the bed in the hotel room. I noticed the Gideon bible in the nightstand, and picked it up and opened it. The first thing I saw was the paragraph that included the parable that Roz had read to me the previous year about the materialistic couple who were cast out of G-ds kingdom. She had said she thought this referred to Stephen and me. But Stephen and I had broken up a year earlier. I was stunned! Why was I in this room and why had I opened the bible to this spot? This was scary enough, but suddenly the lights went out! I started to pray. I was terrified. I walked over to the window and prayed. But what did I pray for? I prayed that my roommate, who was to become my future husband, and life partner, the father of my children–I prayed that he would love me and marry me. AND THEN THE LIGHTS TURNED BACK ON. At that time we were roommates and lovers, there was no sense of any real future for us. In hindsight, I do not think G-d was in that room, or the reason why I opened the bible to that paragraph. I do not think that Roz and Donald were holy people, as I was led to believe. I think the devil was playing tricks, and I was simply a naive pawn who fell into his lair. I needed love. I needed protection. I did not really know this young man who was my roommate and lover. Why was I praying that he would love me and marry me? It was because I was lost. Weak. Broken down from losing trust. I wanted to be saved, but I wasn’t looking in the right place. Instead of praying for G-d to give me strength and serenity, to guide me, to love me, I looked to another human being, a fallible young man, who had his own insecurities and vices, to save me. And that’s what I got. We ended up moving to another house with Sheila and Charlie, then graduating from the college, and his parents picking us up and driving us to New York, where I stayed for a while in their home. When that didn’t seem appropriate, I went to live with my sister and her husband, who by then had two little kids. That lasted about two weeks. I then flew to Florida to live with my parents. There was not even a bed for me to sleep in. I slept on the living room rug. In the meantime, my boyfriend, this young man who I prayed would marry me in that room at The Lord Nelson Hotel, would call me on the phone everyday and send me letters. He was going to rent a loft in Manhattan for us to live and work in as artists. A studio. My father said don’t go and live with him unless you are married. I told my boyfriend what my father said, and he said, okay then lets get married. He proposed over the phone. My parents met his grandmother, Lena, who lived near them in Miami Beach. They liked each other. She gave her approval, and the rest is history.

Now about the numbers 111, the numbers on the hotel room door, that so prominently inscribed themselves in my memory, kept coming up again and again throughout my life. Out of the blue I would see them. Many times when I went to a hotel the room number I got was 111. It happened in New York, in Massachusetts, and in Indiana, when our son graduated from university. These numbers kept appearing.

Now I am quite ill. I often look at my phone to check the time when I am trying to get ready after struggling to take a shower. It is not so shocking now, but the numbers that I see are often 111. I have researched and read about the significance of seeing these numbers. I’ve read the number 111 is a call from the angels to pay attention to your thoughts. In every moment thoughts, emotions and beliefs are playing a huge role in what will manifest in experience. I believe that what happened to me in room 111 was manifested in my life. What I prayed for at that critical moment became my life. Now I keep seeing these numbers and maybe it’s the angels telling me not to be so afraid. They will carry me home.

Another weird sign

In 2013 I was awarded the Nancy Malone best director muse award through New York Women in Film and Television for my work on The Lilliput movie https://player.vimeo.com/video/91234297

I was honored and spoke to her on the phone. I had no way of knowing that she was ill and would die of pneumonia and leukemia the following year at the age of 79. She was a ground-breaking talent, an Emmy Award winning Director/Producer, a Sarah Siddons nominated Actress, a Co-Founder of Women In Film, the first woman VP at a major studio (20th Century Fox), and she appeared in TV’s first Soap Opera, “The First Hundred Years” and then as Robin on “Guiding Light”(1961-63). I remembered her from her recurring role on the TV series, Star Trek.

I was invited to New York Women in Film and Television in 2014 for Nancy Malone’s memorial service. Her film https://www.youtube.com/watch?v=ObGjgr9FUgU There Were Times, Dear made in the mid 1980’s was one of the first films about a couple with a spouse being diagnosed with Alzheimer’s. It was shown before the memorial service in which Angela Landsbury spoke. I had no idea I was about to descend into the vortex of Alzheimer’s the following year. I think it’s weird that this is one of the last films I remember seeing when I was well. I think it’s weird that the woman who awarded me for my Lilliput film, died and that it was at her memorial service that I saw her film about Alzheimer’s.

This is why I feel that descending into Alzheimer’s is a sudden madness. I did not have this disease or didn’t know that I had it when I saw Nancy Malone’s film and attended her memorial service. I was living my life and functioning. My life had purpose and structure. Memory was not an issue, then.

The Desperation to hold onto my mind and memory through the haze of confusion

In order to remain grounded in the present and hold onto the memory of what I do, I take photographs and they help me remember what happened on certain days. I know that Ruth went to visit her daughter on September 27. I wrote my last blog and posted it on October 1. I think that was a Monday. Ruth was going to be gone for two weeks, but surprised me and returned on Tuesday, October 2. I was in my home with her sister Jeanne, and the doorbell rang and it was Ruth.

As I have said, it’s been hard to write the blog and the photographs I’ve been taking to remember what happened on the days since the last post, have been piling up. Here they are now with the little stories that go with them.

On Friday Oct 5th, Jeanne took me to a musical Shabbat at the synagogue. I was very concerned, and am always concerned about being in public. I thought it would be raucous and thought it would be hard to handle, but it turned out fine. When we got there I snapped a photograph of a little girl named Heiya, who was wearing a Chinese dress and in her hair were chopsticks and a yamelka (a little skullcap). So cute! I met a man named Adam, who played the guitar during the service. He told me that he had two daughters, one 15 and the other 20. I snapped a photo of the curtain covering the arc where the torah is kept, and noticed that the curtain had been changed since the High Holy Days. The musical service was lively and sweet. Jeanne wanted to leave before the regular Friday night service. I snapped a photo of the rabbi showing the stained glass windows to the people there.

My husband takes me for walks. On Saturday, Oct 6 he pointed out how the birch trees in the park have different growth patterns. This one is very large and splits in the middle as it grows upward.

Our daughter came to visit on Sunday, Oct. 7. This was my husband’s birthday. No photographs I can include from that day. No cake or party as in the days of old. It was just a visit, and time for her to spend with her dad and a little time with me. She needed to get ready for a trip to California for a film festival that she was producing.

On Wednesday, Oct. 10, I wanted to go over to Ruth’s, but forgot that I had already agreed that she was coming over here to my home. I went to the front door and there was a huge box on the doorstep for one of the tenants (there are two small apartments we rent in the upstairs part of this house). I dragged the box in and placed it by the stairs, and headed out. I called Ruth on my iPhone and she was already two blocks from my house. Ruth is so easy going and flexible (usually) and she reminded me that she was on her way, but it was okay to go back to her place. She waited for me on the corner, and we headed to her building 1/2 mile away. It was a nice day and Ruth wanted to sit outside at the waterfront near her building. Decisions are ridiculously hard for me. One moment I want to do one thing and the next moment I change my mind. When we got to her building, there was outside renovation going on in front of her building, and in order to get to the waterfront, we would have to cross the street. At first I didn’t want to cross the street! Then I changed my mind and said we should (poor Ruth always dealing with my agitation about every little change), so we crossed. We headed to the waterfront, and there were no shady places to sit. Bright sun! No choice but sit in the bright sun. I think by this point Ruth was getting a little irritated with me. We had a silly argument about her mood. Then we just sat and looked around at the water and some women with dogs who live in her building. We hung out together in the bright sun and then returned to her apartment, where we were greeted by her cat Gigi.

Ruth got sick. She really needed to lay low for the next weekend. My husband took me for walks in our neighborhood. It’s really important for me to walk even a little bit and to get out of the house. One Saturday we only went to the park which is two blocks from my house. I was cold and I wanted to go home. On Sunday, I bundled up and we walked further west and went in the direction of the light rail, where there is a lot of construction going on.

On Wednesday, Oct 17, my best friend Ruth walked with me to the park and I snapped two photos. One was of a football game likely between the local high school and another high school team. The other is a statue of Christopher Columbus. I wonder what he would think if he were alive now, knowing that this crazy lady with Alzheimer’s is including his likeness in her blog.

I’m sure by now you are thinking why does this crazy Alzheimer’s lady bother. Because if I don’t keep writing and documenting then there is nothing. You will think I’m gone, and I’m not. I’m impaired and this is a lot of work, because I have to keep correcting, and remembering how to write and upload photos. But what will I be if I don’t keep this diary of my journey? I will sit in front of the television and play Lumosity games. I might draw, but you wouldn’t see my drawings. So it’s the way I show you that even with progressing Alzheimer’s, my life has a kind of poetry, and meaning.

One final image. This is my husband’s iPhone which he reads at the kitchen island. He uses a banana as a stand. It works for him, but I think the photo is ridiculous and funny.

Portrait of my daughter September 24, 2018

We don’t know what will happen. One day we’re flying high, doing great, the next we come crashing down and the damage is irreparable. Life throws curveballs, especially near the end. But I’m convinced that I am still learning. Spirit will show the way.

Alzheimer’s is a physical disease that attacks the brain AND body. So spirit has become the most important aspect of the journey, but it takes having a body on this earthly plane to continue to develop spirit.  So much to atone for, so many apologies to make (in earnest) before I say goodbye. Do not judge me. Cleansing the spirit takes work and time. I need to be able to own my life review. Forgive the angry ones that have hurt me. They don’t know any better. Forgive myself.

This is a very hard disease to live with. My genetic and physical imperative is to keep going, keep pushing. This is my Alzheimer’s pilgrimage. My body is becoming weaker, but there will be a healing of my spirit.

I have been trying too hard to figure things out. That’s not the answer. I am constantly correcting when I write and then I start over. I am fighting this dreadful disease by pushing away the mistakes, the cobwebs.

Although I obviously know the English language, as it’s my native tongue, writing coherent thoughts is harder and harder to do. Nothing about this disease makes sense but I keep trying to make sense of it. I will try to stay on track and continue to describe my experience progressing in Alzheimer’s. There is more spirit left than brain cells. I’ve been trying to write this post for many many days now. One sentence at a time.

Ruth, who lives in an apartment a half mile away, has become an almost constant companion, my closest friend since I met her last April. Her sister Jeanne introduced us. I met Jeanne through my synagogue, and she has been visiting me once a week for many months, and has been bringing lunch and dinner on Wednesdays. Ruth moved to Hoboken from Atlanta almost a year ago. Both sisters have big hearts and a lot of compassion. I would have never gotten to know either of them if not for having Alzheimer’s. Ruth is 73 and Jeanne is 77, and they are very different from each other, but nevertheless are true sisters who care about and love each other. Ruth is a Jehovah’s witness who was born Jewish. Jeanne is a long time member of the synagogue and a member of the chorus, who has lived in this town about as long as I have. Sadly my  own only sister and only sibling, who knows I have Alzheimer’s, has not seen me in over four years. I would like to see her one last time, but most likely won’t. It is a double blessing that these two sisters have befriended me.

I have called Ruth my friend at the end. She flew to Atlanta to visit her daughter and family and will be there until Tuesday, October 9. I was worried about getting through this period without her support. At times it’s worse than I thought it would be. At times it’s okay.

A person with Alzheimer’s needs support, and I was afraid that being alone especially when my husband is not here, would be untenable. He is the one who does so much for me and for us. He shops and cooks and takes care of the house and all the finances, AND he works full time. The poor thing, he is exhausted as taking care of his Alzheimer’s wife and everything else he does is so much work. Ruth’s presence has allowed him to rest when he gets home from work, which he needs badly.

It’s more than a week (almost two weeks, I think) since Yom Kippur, the day of atonement. I wanted to go, so Jeanne came over and we walked to the synagogue, a half mile from my home. I sat next to her in the row directly in front of the bimah (the raised platform in the synagogue from which the Torah is read and services led). Jeanne is a soprano in the chorus and was there to sing Neilah with the rabbi. It is the concluding service and is a special prayer service that is only held on Yom Kippur. It is the time when final prayers of repentance are recited. During the repetition of Ne’ila Amidah, the ark remained open and I stood up and prayed for my loved ones, my son and daughter, and my husband. My granddaughter and the twins my daughter-in-law is carrying that are due in around three weeks. I did not pray for myself.

Throughout the High Holy Days Jews pray to be written in the book of Life, during Ne’ila this is replaced by seal. I did not pray to be sealed in the book of life, but I prayed for atonement and I prayed for them, my progeny and my husband, that they should be sealed in the book of life.

The day after the Neilah service,  Jeanne walked with me again to synagogue to hear and sing Yizkor, the memorial service recited for deceased parents and other relatives. The name of the prayer means “May He remember”. Not only do many who recite the prayer find it to be a moving, emotional experience, it also has the power to elevate spiritually the souls of the departed. Yizkor is predicated on the Jewish concept of the immortality of the soul.

I read the line from Psalm 51 “The sacrifices of G-d are a broken spirit; a shattered and contrite heart, O G-d, you will not despise”.

I cry out to G-d, “Is my heart sufficiently shattered, Lord?  Is my spirit sufficiently broken?” “The days of our years are seventy; or if, because of strength, they are eighty years, yet their pride is but trouble and wretchedness; for it is soon cut off, and we fly away.”

I am 64 years old! I don’t deserve this. I don’t. To experience the diminishment of my life because my brain is dying is unfair and tragic. I don’t deserve to live in such a chronically confused state, without full agency, with diminishing strength. I think of the film Unforgiven when Gene Hackman says, “I don’t deserve to die like this.”Eastwood’s reply is simply, “Deserves got nothing to do with it.”

The Baal Shem Tov said the broken heart is the ax that smashes all the locks on the doors of heaven.

At the conclusion of Yom Kippur the children came up to the bimah and Havdalah (Hebrew for “separation” and refers to the verbal declaration made at the end of Shabbat or a Jewish holiday, in which the holy day is separated from the mundane period that follows). Since Jewish days begin and end with nightfall, havdalah may be said only once darkness has fallen.

I was flooded with memories of my daughter singing here as a child. My son standing on the bimah at his bar mitzvah with Stephanie, the woman rabbi,  who was the second woman in the country ordained as a conservative rabbi. That was 1995. My daughter was three. My late parents were there and my father who was well versed in Hebrew prayers, sang on the bimah. I hold onto the memories. My anchor is memory and I do not want to forget. I continually read that this happens in Alzheimer’s, that loved ones are not recognized and the relationships are not remembered. I will never forget them. Let me not forget my children and let them not forget me. That’s my prayer.

I know there are those who have their own tsuris (Yiddish for troubles and woes) in this community. However, for most it will be a year of normality, with it’s ups and downs. Most are not thinking about living through the coming winter, which is my concern now for both my husband and me.

I cry at night when I finally lay myself down in my bed. It’s usually after 2 am. Day and night have switched and it’s very hard to get myself to bed.

I do not want to progress further, but I’m aware that I can’t stop this insidious decline unless I off myself. I do not have anosognosia, a term that applies to people who have Alzheimer’s and do not know it. I’ve read that some become blissfully unaware. I am completely aware of losing my cognition and along with that my motivation and my strength. I’m aware that my writing is disjointed. I’m writing anyway. I have struggled to maintain a modicum of independence, wash dishes, and do laundry.  I have progressed rapidly in the disease, only having been definitively diagnosed less than two years ago through imaging of my brain which revealed atrophy of my the temporal and parietal lobes. I know that this is fast progression. Some are diagnosed and plateau with short term memory loss for a long time. I have spiraled quickly.

Will I be able to write and walk and talk, dress myself and go with Jeanne to the synagogue as the weather gets colder? Will I be able to put on my down winter coat myself, that my husband bought for me early in the disease in 2016?  Will I still be able to play Scrabble (which I do every week with Jeanne and with my daughter when she visits)? How will I change? Will I give up or keep going? Is it my choice?

My daughter plays Scrabble with me when she visits. It’s something we can still do together. She doesn’t spend enough time here to witness my progression.

People who are progressed in Alzheimer’s often lose the ability to express themselves with words. They use fewer and fewer words and often stop speaking. I can still speak and can have a conversation, but now there are times a stream of babble spews forth from my mouth as it did the other day, when my husband brought me downstairs for breakfast. Unbeknowst to me, he was recording me on his phone and later played it for me. He called it Alzheimer’s rap. Out came a litany of disconnected and nonsensical words, some of which rhymed. I did not have control over what I was saying, The words tumbled out of my mouth in a disorganized incoherent  manner. This has been happening more often. I’ve read about what is called word salad, and watched a video of a woman who had Alzheimer’s who was unable to speak fluently or make sense. It happens in Primary Progressive Aphasia which is a form of Fronto-temperol lobar degeneration, but also happens to those with Alzheimer’s. Like everything else that has been sudden about this illness, this has now been happening to me.

Has G-d forsaken me? How could this disease take me and break me and scramble my brain so quickly? I have been looking to G-d to repair my broken spirit. He cannot repair my broken brain, can’t restore the disrupted synapses or repair my enlarged ventricles, but He can apply salve to my broken spirit.

Half moon phase

I was diagnosed twice, September 2016 when the first neurologist ordered a Spect scan, and again in February 2017, when the second neurologist ordered the FDG Pet CT. Both scans showed the pattern of Alzheimer’s. The disease began with full force in 2015 with major depression and tremendous anxiety. I went to a psychiatrist who put me on Welbutrin, SAMe, along with Lorazapan and Klonopin at bedtime. Rather than helping, the drugs unmasked the disease in the making. I began to stutter. Became hyper verbal.  Lost my previously normal sleep cycle. Fragmented my thoughts and changed my personality. For a time I became aggressive, angry and paranoid. I did not know what the hell was happening to me.

Memory of the past is mixed up with the present and I can’t keep my mind on one thing long enough to complete a thought. What is happening is global impairment. A full on attack and destruction of my brain in every lobe. Progression. Brain atrophy. I write in clipped sentences. Does this convey what is happening to me?

My husband told me to write out the gibberish I was speaking. Alzheimer’s rap. Alzheimer’s Hip Hop. Words come out of my mouth that are disembodied artifacts. The poetry of brain disease.

*****

RUBIN

The third Friday of every month is a program at The Rubin Museum called Mindful Connections. I’ve been attending since June 2017. It’s where I’ve learned more about what Alzheimer’s really looks like as people who have the diagnosis progress. I’ve met people in all stages of the disease there.

A year ago Michael seemed much the same as he is now, in a wheelchair, mute, incontinent, paraplegic and cared for by home health aides 24/7 who bring him to the museum almost every month. I’ve read that people who have Alzheimer’s and are in late stage can live for years if their carer feeds them and provides good 24/7 care. Michael is a living breathing example of this. When I first met him, Jaime was his aide, and then for a long time Georgia was his aide. He was well cared for by Georgia, neatly dressed, well fed and more alert. She said she taught him to say her name and I witnessed his attempts to speak. Last Friday my husband drove us to the program, and Michael sat with his new aide, looking a little unkempt, and certainly not alert as he was with Georgia.  The new aide sat next to him texting on his phone, while Michael sat in his wheelchair asleep. Laura who runs the program greeted us at the long table. I sat with Annie whose bright smile and kind demeanor relaxed me. The usual suspects were there; Scott the former plastic surgeon, the very tall Peter with his kind aide who is a foot shorter than him, Linn who volunteers and who told me her late husband had been in an Alzheimer’s chorus with Michael eight years ago.

I pushed myself hard to get ready to be there on time. What I realized once I was there is that I have progressed a lot. A year ago when I first met Michael, my speech was normal. I had just started to write this blog. My walking was not affected. I was able to come with my daughter and later with my companions, first Jill and then Keith, and still later by myself on the PATH train alone. I walked normally without feeling imbalanced. Now walking is effortful, and I have to push myself. It has been a year. Now it is a hurdle to ready myself so that my husband can take me by car. I can still walk down the wide spiral stairs at the museum, instead of taking the elevator but it takes concentration and effort. I’m cautious and hold the banister.

Jeremy brought us up to the second floor and showed us a scroll painting of Red Avalokiteshvara, a bodhisattva who are traditionally described as beings that aspire to attain enlightenment and help others to achieve it. He is standing with his right hand in a gesture of giving and holding a stalk of lotus with his left.

Torana

Jeremy and Dawnette  showed us the upper section of a Torana or gateway. It was used as the top of a portal entry to a temple or shrine. To me the central figure resembles a monkey, but we are told it is supposed to be a winged lion. The lion is holding and consuming two large serpents. beside them are crocodile like mythical creatures symbolizing both celestial and terrestrial water circulating between heaven and earth.

Next, Jeremy seated us in front of the Tibetan Buddhist Shrine Room which re-creates an immersive sacred space in which we encounter Himalayan art as it is used in practice. The objects represent the fundamental Buddhist acts of offering, prayer, contemplation, and devotion. It includes more than one hundred objects, including sculptures, paintings, offering bowls, musical instruments, and ritual objects. I  had seen it before and the elaborate room offered me no meditative comfort.

The shrine seemed so remote to me this time until I looked at the left side and saw that here is where the monk would sit and offer tea to the devotees. I pictured myself seated there among the offerings, the pair of oboes played by the monks. For a moment I was transported to the 12th century and sat with the monks.

The program is always over too soon. My attention span is longer than many who come here. I used to spend hours in museums looking at and discussing art with my students, and I wanted to see more. I asked Dawnette to tell me about an installation called The Road to Sanchi by an Israeli artist, Ghiora Aharoni, which was installed to the left of the Tibetan shrine Room. Obsolete taxi meters are outfitted with video screens that capture Aharoni’s travels to sacred sites across India for Hindus, Jews, Muslims and Buddhists. The title refers to one of the most important sites in Buddhism, famous for it’s Great Stupa built over the relics of the Buddha. Sanchi and the other sites, including the oldest synagogue at Mattancherry, the Sufi shrine at Nizmuddin in Dehli, and the ghats of Varnasi, are never seen in the videos. The journeys become the vehicles for examining the prism of time and the act of pilgrimage.

These objects, discarded obsolete taxi meters with films of journeys to pilgrimage sites, made more sense to me as art – spoke more to me about my condition and yearning for spiritual peace, than any of the ancient objects we had seen that day.

Out on the street again. Seventh Avenue, and headed for the parking garage. A billow of steam erupting from a tube coming out of the ground. New York City streets are famous for this. To me it signaled the release of tension. The street breathing.

We’re behind a truck on route to the Lincoln tunnel. I see how the museum and the art  carries over into the street. Serpents and bodhisattvas.  Serpents painted on the back of a truck. Symbols everywhere. Art is everywhere. Warriors of the spirit.

*****

A pilgrimage is a journey or search of moral or spiritual significance. Typically, it is a journey to a shrine or other location of importance to a person’s beliefs and faith, although sometimes it can be a metaphorical journey into someone’s own beliefs. This is my Alzheimer’s pilgrimage. It’s a journey and it continues…

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

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

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

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

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

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

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

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

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

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

 

 

 

I try to put an order to my thoughts in order to write. Try very hard to remember my days. Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday. What happened on each of the days of my week? Without structure there is no shape. No shape to the days of my life. I write the date on the list I prepare every day for myself. The list that helps give structure to the day. I do this before I go to bed. Alzheimer’s is a memory disease, and the date is forgotten, and only to be remembered when I check my iPhone, and forgotten again.

I guess it doesn’t matter any longer. I’m not in a hurry to get anywhere. My life. The earth turning. Day turns to night and back to day again. Bored and depressed. Confused. Why has this happened? No more work life. No more classes to teach. No more friends to meet for dinner and a film. No more laughter. No more fun. Confusion and anxiety. Rinse and repeat. Why? Why? Why?

But there’s still a life to live. How to live it? Endless Lumosity games played, checking my scores. Trying to bring the scores back up to what they were a year and a half ago when I first started playing the games. I’m slower now. Sitting and waiting for the laundry to be dried in the dryer, otherwise I will forget it’s there, and there will be no clean underwear, no nightgown to put on, no tee shirts that are clean. Ruth will come today around 4:30pm. Rushing to write something. This is futile. Laurie, my dementia mentor, tells me to find some humor in this. She must be kidding. She has no idea how crazy I feel, how stressed I am in this descent to nothingness. There’s nothing funny about it. Nothing.

The senescence of cells in advancing Alzheimer’s causes the brain to atrophy and the body to wither. This is happening to me. I am 64 years old. This should not be happening to a 64 year old woman. 60 is supposed to be the new 40! I’m too young for this tyranny. Too young for the speed of this decline. I watch myself trying to detach but there is no way to detach. It’s called the long goodbye. That’s not my experience. For me it is a fast forward. The last chapters of my life were supposed to unfold. My story was supposed get richer and the tapestry of my life was supposed to reveal layers of meaning. I was going to complete the feature film I began as an American Fulbright to Poland! This was going to lead to other opportunities to make movies! I had three completed scripts! There were actors, art directors and producers involved. Then my reality changed. Suddenly I could no longer do what I had been doing. I began to forget who I was.

Everyone in my life fell away. I didn’t understand what was happening to me. I could no longer relate to my friends and they could not relate to me. Friends are now virtual friends who have a garden variety of dementia diagnosis. We meet on the computer in Zoom chats intended as support groups.

Alzheimer’s is an unraveling of the tapestry of my life. Everything has changed in three years, two years since the first diagnosis. A year and a half since the the second diagnosis, confirming a neurodegenerative disease with the pattern of Alzheimer’s. I had no idea then that I would be a rapid progresser. That this is a disease of progression, shaving away my life, my strength, my cognition and ability to be the independent, vivacious and strong woman I was. People with younger onset that progresses rapidly do not live very long. I know the reality. Pat Summit, the mighty women’s basketball coach diagnosed with Alzheimer’s at age 59 and dead at 64. So many others without the impressive fame, doctors, lawyers, writers, actors… Five years, seven years, three years, in some cases as little as 18 months. Gone. I sometimes say it’s like brain stoppage. Not knowing what to do, how to take care of myself, forgetting how to move around, what to do when I’m hungry, not getting hungry, not being able to sleep, not being able to breathe normally. The body breaks down without the motherboard, which is the brain.

People who read these words are saddened by my description of what the illness is doing to me. I told Laurie, my dementia mentor, that I see that I contain two sides to this disease. One side is like my late father, who didn’t have dementia, and lived to be almost 91. He was a fighter, and tough as nails until nearly the end of his life. Stricken with Parkinson’s, and heart disease, he kept going, even fighting the nurses in the emergency room when he went into cardiac arrest. My mother, on the other hand, who had a long descent into dementia in her late 70’s and into her late 80’s when she died at 87 with late stage dementia and pneumonia, was not inclined to fight what was happening to her. From her late 70’s on she lived in bed, getting up to eat a little something, and sleeping away her days. She would get up at night and pace the floor in the living room, and rant about my father, while he tried to sleep. She was crazy for a long long time. But she didn’t get Alzheimer’s in her early sixties. She didn’t decline until her later 70’s.

My drawing is a self portrait – me with an expression that speaks of my consternation. I drew it from a photograph, a selfie, that I took in the car as my husband drove us both to the beach. That was this past Saturday, August 25, 2018. The bird is supposed to be a robin red breast, who flew into my backyard, the previous day. I’ve enlarged him and invited him to sit on my shoulder in the picture. This is the product of my imagination. Here is the drawing again.

I have read that birds are spiritual harbingers, a person or thing that announces or signals the approach of another. The way this robin perched itself on the back fence, brought to mind my late father, Michael. With the birds arrival, I felt his presence. The robin stood there perched for a very long time, and it appeared to me that he was looking at me.

I felt my father was with me, reminding me that he is still present in spirit. That he is waiting for me. Protecting me, alerting me, in this strange journey I am on now. My friend Ruth sat beside me. I spoke Yiddish to the bird, as he flew to the ground and pecked at some plants. An outsider would surely have thought me mad, hearing me speak Yiddish to a bird, but Ruth is no outsider. She understands the madness the disease is creating. She tells me she is proud of me for doing as much as I do. Continuing to function, not giving into the disease completely.

My father is with me on one shoulder. I am not giving in. I have been fighting it because I have no choice.

This is Amanda, an art therapist I met last Friday at The Alzheimer’s Association. She met with a group of us and brought clay. My reaction to viscous art materials, even though I was an art teacher, is to not want to touch them. I’ve heard this happens to some children who have autism. I didn’t want the clay to get inside my nails or on my hands, but I did want to make something. I asked for a ball of clay and saran wrap and formed a little monstrous head. I’ve felt since the beginning of this “change”, that the regression into this disease, is like becoming a monster.

Amanda had us write about the piece we made. I wrote-

I am clay. I am dust. Once a baby, malleable, with infinite possibility. I am seeing my mother’s eyes. The orbs full of exotic vitality – longing. I am now seeing the vestiges of her being. Memory. Her voice. She calls to me, Minyala, in Yiddish. Her features now monkey like, transmuted in clay. I am that monkey, that chimpanzee. I am regressing into the primordial ooze. A piece of clay, I am unable to touch. It molds itself with the imperative to become something. An irrepressible thing. A defecated thought. Something ugly. 

Amanda told me about a woman she works with who is 63 and was a fashion designer, and has had Alzheimer’s for ten years. She no longer speaks, but can sew, and they work on a tapestry together. She is ambulatory, and has a full time home health aide. I cringe at the thought of not being able to speak. But she can sew. How odd!

My husband was ready to take me home. We went down the elevator from the 22nd floor, and onto 41st Street. The building exits onto the library walk, the street leading up to The New York Public Libray. I snapped photos of the brass plaques inserted into the sidewalk.

Humpty Dumpty sat on a wall. Humpty Dumpty had a great fall. All the kings horses and all the kings men, couldn’t put Humpty Dumpty back together again.

Must be true. Information about anything is light. That’s why I write and share my wild and sad story. There is light in this darkness.

Then the walk to the Port Authority, through Bryant Park, and past a young homeless man sleeping on the sidewalk.

It being Friday, there was a long wait for the bus, with commuters standing on the unmoving escalator stairs.

I check on my phone app to see how much I walk. That day it was 3.6 miles. That equals 8,481 steps. I was exhausted, by the time I got home, but I think I went to Ruth’s apartment, after I ate. I have to remember to eat. I am getting very frail.

On Saturday, August 25th, my husband took us to the beach. I hadn’t been to the beach in over two years. He packed snacks and off we went. That’s when I got very nervous and agitated. I snapped a selfie and sent it to my daughter, who texted me saying, “Be in the moment. Nothing to fear but fear itself”.

Obstacles! As soon as we hit the highway, his car (however it does that) alerted him that he had a flat tire! I have known and felt that obstacles will be my undoing. but not this time. He is resourceful. He drove to a gas station and inquired where to fill his tire with air.

Onward to the beach, but first he wanted to go to Starbucks and I had to go to the bathroom! So we found a strip mall, and at the end, sure enough, there was a Starbucks. He bought me a sandwich and an orange juice, and I sat in the only upholstered chair available, while they heated the sandwich. An older man sat across from me listening to something, probably music through his blue earbuds. Oblivious to me, I snapped his picture. I’m the Alzheimer’s spy.

Back on the highway, I sometimes wonder if my husband would find his way if he didn’t have GPS. Probably not. We were going in the right direction, and headed towards Tinton Falls, which we would have to drive through to get to Belmar Beach.

Over the bridge and closer. I remembered loving the sea air, and the feeling of driving to the beach as we had done so often when the kids were young. We had rented a house at Seaside Heights and this felt like the way I felt so many years ago going there.

Finally there, he parked the car on a side street close to the beach. A gazebo and what looked like a wedding in the distance.

We sat on a bench on the boardwalk and watched para-sailers who were attached to a motorboat, sail through the air. Parasailing is a recreational activity where a person is towed behind a vehicle (usually a boat) while attached to a specially designed parachute, known as a parasail. I marveled at their bravery and tried to imagine what they felt like.

It cost $16 for both of us to get onto the beach. It is free after 6pm and it was almost 6 o’clock. I did not have a bathing suit on, couldn’t possibly put one on. I wore my old beige pedal pushers and a pink and white tie dye tee shirt. On my feet were the black fit flops I used to wear before I got sick. I was afraid of walking on the sand, afraid of getting sand on my feet. Didn’t know how it would feel to walk on the sand. There was a blue plastic sand cover graciously provided to cover the sand that led partway to the shoreline. 6 o’clock came and we walked out onto the blue cover. No way to avoid getting sand on my feet. My goal was to put my feet in the water. I wanted to feel the ocean water on my feet. I rolled up my pants and walked up to the edge of the water and the wave came in and the water lapped at my feet. This is crazy I know, to be so afraid of the water, getting sand on my feet, knowing that with my feet wet, the sand would stick. This was immersion in my fear. Forcing myself to do it. My husband put a towel on the sand, a few yards back and I sat down, and took a photo of my feet. Ridiculous and absurd, I felt victorious for simply having waded into the shallow wave, and walking on the sand.

The trip home. Clouds and a glorious sky.  I fell asleep in the car.

It’s rare for me to fall asleep in the day. It’s a normal response for normal people after a trip to the beach. But I’m not normal. For me sleep now has been the only escape from this disease, and I have very little of it. I usually sleep around four hours straight and lay in bed too exhausted to arise, for several hours.  The car must have lulled me, and since I often chatter non stop and it’s a big distraction for my husband’s driving, it’s good I fell asleep. I woke and it was nighttime. Still in the car, but close to home. I looked up and saw a full moon and tried to photograph it. The results look like something from another planet.

I so want to undo the effects of Alzheimer’s and the insanity it is causing in me. I am trying to hold onto everything that is real and precious now.

 

 

 

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

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

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

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

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

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

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

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

Buddha Shakyamuni with Sixteen Arhats, painting on cloth from Tibet 15th century

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

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

Tara a Female Deity, Tibet, 18th century

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

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

Durga Killing the Buffalo Demon, Nepal, 13th century, Gilt copper alloy

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

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

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

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

More images to share: Bodisattva of Compassion

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

Pratissara, One of the Protector Deities

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

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

 

 

Self portrait with an abstract thought

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

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

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

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

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

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

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

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

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

Brice Marden painting above the ticket area

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

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

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

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

Endless Column, 1918

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

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

Alexander Calder, Lobster Trap and Fish Tail, 1937

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

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

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

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

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

Phillip Guston, Source, 1976

Talking, 1979

In the Studio, 1975

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

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

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

Elizabeth Murray, Do the Dance, 2005

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

On Kawara, April 24, 1990, 1990

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People

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

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

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

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

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

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

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

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