Portrait of my husband, February 2019

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

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

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

Walking with Theresa my companion, last Thursday

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

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

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

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

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

A white Fiat photographed before turning the corner.

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

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

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

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

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

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

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

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

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

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

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

Happier days. 2008 as an American Fulbright to Poland.

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

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

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

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

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

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

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

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

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

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

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

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

My grandchildren, February 2019

Welcome to my world.

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

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

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

I love. I loved.

My husband.

Our children.

My friends.

I laughed.

I am a mother and grandmother.

Three delicious adorable babies.

Theirs will be a better world.

*****

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

PLEASE listen to this.

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

*****

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

Each day it gets harder and anxiety looms large.

*****

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

A world without Alzheimer’s is a better world.

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

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

*****

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

*****

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

*****

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

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

*****

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

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

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

*****

How about some irreverent humor?

Whew, finally some comic relief!

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

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

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

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

Stitches——————

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

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

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

Stitch by stitch. Fragments pieced together.

Weaving my way through the maze.

A revision.

Experiencing anger that nothing I do will change the fact that this disease progresses and I have no control over the “stages”. What am I looking forward to? Not being able to speak? Having 15 words left in my vocabulary, then 5 then 3? Stumbling along between my bedroom, living room, kitchen and bathroom? Then what? Forgetting where these rooms are located? Seriously, my world keeps getting smaller. I know where this leads, but I also don’t know. Because I’m not at that point yet. I have observed others who have this diagnosis. Some stay in the early stages for a long time. Some progress within months or a few short years. Each person is different.

Sure we’re all on a trajectory. Alzheimer’s or not. No one knows where their lives will lead. People who went to work at New York City’s World Trade Center twin towers on September 11, 2001, had no idea that two commercial passenger jets would crash into them making the towers collapse. They just went to work one day and this is what happened. 2,763 people died that day. The only ones who knew they would die were the 10 hijackers. The 2,192 civilians, 343 firefighters and 71 law enforcement officers, woke up that day, had their cups of coffee, or whatever they used to do when they arose. Most of them probably took showers and the women looked fashionable and the men looked spiffy in their suits and ties (it is New York City and people dress this way for work). Maybe they kissed their wives or husbands before they left for work. Maybe they told a joke and laughed and hugged their kids, after rinsing out their cereal bowls. And then shit happened. Shit happens! This is an extreme case, but I for one know that we plan our lives, and then our lives plan us.

It’s been many weeks since I’ve written. Often when I write, the letters get  scrambled with misspellings, letters missing, and I stop. I have trouble reading more than an article in The New York Times, or a short story. I don’t retain much information. I forget. But I still want to write. Will there come a time when I get on my computer and the words look like this xjeho9odyxnbdk,disjms,djYTTRYUKmnheuyiodpuxyyhjsllpeo0iysghdkeo873t53555%^?

I don’t remember most of the posts I’ve written. I reread them to see how I’ve changed. A year ago there were no problems walking, chewing, or swallowing. My speech did not sound different. A year ago I was having trouble getting dressed. A year ago I did have trouble getting out bed and getting the day started. I wasn’t able to sleep much at all. That has improved somewhat, but I do go to bed very very late and do fall asleep as soon as I climb into bed.

I never wake up and jump out of bed and get dressed and ready and out the door. That is a thing of the past. The pattern is now to fall asleep after I write my list, make my tea, brush my teeth and wash my face, and take the tea and robe upstairs along with my iPhone. I set down the tea on my night table, plug in the phone, and put the clothes on the hanger for the next day. I put on my pajamas, and take the hanger with the clothes on it downstairs along with my shoes. I hang the clothes on a hook inside the bathroom door, and go upstairs to bed. Lights out and I’m asleep quickly. Sometimes I still wake an hour after falling asleep, but can close my eyes and fall asleep again. Lately I wake up five hours after I fall asleep.

I remember the lyrics of a song by Donovan I used to listen to as a teenager.

It’s called Sleep.

Sweet gentle sleep

Sooth and refresh me

Weary am I of this life

And my fortune

Black velvet night

Do envelope me

Falling am I, like a star

In a dark swoon

Winter peeps

And silent creeps

Under hill, over dale

Autumn leaves

Like crimson wreaths

Sadly down the wind sail

The wind sail

Little Linda

Glowing cinder

Sparkle like a star

Sun and roses

Merely shows us

Exactly where we are

A jaguar, a hollow car

Far in the winter, lane-o

Lacework trees, the Jack Frost breeze

Pheasant birds are slain-o

They’re slain-o

They’re slain-o

*****

I know that there are people who read my sad musings and some have said they look forward to receiving my words. So I write for you so that you’ll know I am still here. I’m reporting from the outer reaches of my Alzheimer’s mind.

I understand that you are trying to relate and it’s hard to understand my  lack of motivation, the difficulty starting, the start stops, and the great big nothing in between. All I can do is try to explain what it feels like.

I think of the movie I watched with my son when he was little called The NeverEnding Story. It’s about a boy, Bastian, who misses his mother, who has died, and he is bullied at school. One day, he is running away from the bullies and hides in a bookstore, where the owner shows him a book that he has never read called “The NeverEnding Story”. He takes the book, leaving a note saying that he will return it after he reads it. He goes to the attic and reads the book that tells the story of the magic kingdom of Fantasia that is doomed to destruction, unless a boy, Atreyu, can go save it. But he needs the help of an Earthling boy to avoid that The Nothing destroys his world.

What I keep remembering about the movie is the visual force of The Nothing. The way it destroys everything. The boy succeeds in battling The Nothing. The Nothing is a good metaphor for Alzheimer’s. The Nothing is entropy. Chaos. Death. The wind that blows away the world. Unlike the boy in the story, I can’t stop The Nothing.

*****

The days have turned into weeks. The blur of sameness. That’s the part of all this that is depression. I am able to parse that out. My late mother who had late age Alzheimer’s, I believe beginning in her late seventies and lasting until her death at age 87, used to say in Yiddish, “Alles is allamool der zelbe, der zelbe, der zelbe”.

The translation is “Everything is always the same, the same, the same”. I did not understand then. I understand perfectly now. She was by then mostly bed bound and fully housebound. I had no idea that what she suffered from might be Alzheimer’s. I was uneducated and naive. She would spend the day in bed and get up late at night when my father and I were trying to fall asleep. She would pace around the living room and rant and rave for hours about how horrible my father was. It seems to me now that she was experiencing sundowning. I would hold my hands over my ears trying to silence her intrusive wailing. A few years later, frail and in steep decline, she fell on the tile floor of the living room of their Florida condo, and broke her arm. That spurred a much faster decline. When I called her on the phone (which was in their kitchen), she told me she could not stay on the phone (a wall phone) because it was too hard for her to stand. A year later I sat next to her on her bed, and my father walked into the bedroom. She looked at him and instead of Michael, his name, she called him Moshe (the name of her deceased cousin). By that time she was incontinent and a hired caregiver would come and change her diaper. Then she was  hospitalized for dehydration. In the rehab, a nurse gave her a prescribed dose of Haldol, which caused a stroke within minutes. She never spoke again and never walked again, and never fed herself again. She went from late stage to beyond late stage. She lived like that, incontinent, hand fed, moved by caregivers from the hospital bed to a chair, then back into bed, and mainly slept the rest of the time, for almost two years. She died of aspiration pneumonia, but it was Alzheimer’s or a combination of this and Vascular dementia, that took her down that miserable path.

So here I am twenty two years younger than she was when she died. I do not want to decline like that. I do not want this disease, but I have it, and know what it’s called and know that it’s neurodegeneration. I do not sleep all day in my bed as she did, but find it very hard to get out of bed and function. I have a form of what my mother had and the onset came for me almost two decades earlier than it did for her. She suffered from depression. Depression and anxiety can lead to dementia. I took medications for this in 2003, 2005, 2008, 2012 and then in 2015 when I was put on Wellbutrin, SAMe, Lorazepan and Klonopin the medications pushed me over the edge. The neurologist said they disrupted synapses. My broken brain could not recover. When this started and I thought it was a terrible relapse of depression and anxiety. Then a few weeks after starting the medications, I had a paradoxical reaction, and woke into a psychotic state in which I was dreaming fragments of a dream while awake. The medications to treat the depression and anxiety broke off whatever remaining synapses there were that were holding things together. I do not have the Presenilin gene, and was tested for that, but I obviously had the same tendency, or genetic makeup as my mother, and succumbed to whatever brought her down. But so much damned earlier and so much faster.

*****

 The other day my brain physically shifted in my head. It felt like that. Like a seismic shift in the topography inside my head. It’s possible that my brain which is shrinking, moved inside my skull. The word I would use to describe what it felt like is “Doink!”. Something shifted.

*****

Now that the friend who promised to be my friend until the end, has severed all ties, there is essentially no where to go by myself. I experience this as loss of independence. Being able to go to her apartment and visit her kept me going. Kept me from sitting so much. Kept me walking. Gave me courage. Gave me hope. Put a smile on my face. Lately I have to force the smile and my lips crack.

*****

Once a week, on Wednesdays, Jeanne visits and brings good food and we pay Scrabble. When I played with her last Wednesday, I noticed the words I came up with related to my condition. Scrabble poetry. I spelled MINDS and then spelled ENDURES. I then added an S to ENDURE and then spelled WEEPS by connecting ENDURES to it. This gave me 41 triple word points. I beat Jeanne by around 100 points. Emotional Scrabble. My mind weeps and endures.

My husband hired a woman, Teresa, to be my companion two days a week. She takes care of a 94 year old woman in the evening, who is blind and has Alzheimer’s, so being with me a few afternoons a week, is more stimulating for her than that job. She said when this woman speaks, she talks to and about her dead husband as if he is there. Last week we walked a mile and half. She came last Tuesday (as she did again today), and it was freezing cold outside, and we stayed inside. We stayed inside again today. My yoga teacher, Krishna came, and while I was doing yoga, Teresa made the bed and did some light housekeeping. Last week I asked her to put together one of my Ravensberger puzzles, and I timed her on my iPhone timer. It took her longer to do it than it took me. She is 58 and has five adult children and grandchildren. Her husband died 8 years ago at the age of 62 from a blood cancer. She said he lasted 8 months. She’s told me a little about him. He was a New Yorker, and it sounds like he was inspiring to her. I showed her the documentary, The Forgetting. I showed her a video of Laurie Sachs (Looks Like Laurie, sounds Like Laurie) who had rapidly degenerating Fronto Temperal disease that began when she was 46 and killed her by age 52. Always the educator, I want her to know what she’s dealing with. I am still a teacher in a way. She asked if I like to listen to Dolly Parton. Has she heard the music of Lou Reed, David Bowie, or Patti Smith? Chopin or Debussey? This is the music I listened to and can relate to.

She is open to learning and is patient…and let’s face it, I’m stuck. I do need a reason to get up and push myself to get through some semblance of a routine, live through each day…somehow. I haven’t been drawing much at all, and though I still read, I am not retaining much. I am at the point that I need a companion to go out and take walks. I need someone to talk to. Everyday. My friends have abandoned me, except for Jeanne who visits on Wednesdays. So Teresa is for now my part time companion. To chase away the loneliness and keep me going.

She’s a petite woman, and I doubt she will be able to move me around, and shower me, if and when it gets to that point. My late mom during those last two years of horrible decline was sponge bathed in the hospital bed by the nurses and caregivers my sister and I hired. Awful. So if you wanna pray for me, pray for my passing before it gets to that point, because I will not be a docile creature that is easy to wash and feed if I can’t do it myself. And I can’t imagine my husband will give me sponge baths. So pray for me to not get to that point, because I hate this disease and do not consider that a life worth living.

On Thursday, Teresa texted and canceled and said she didn’t feel well. I texted her later and asked if she went to work with the 94 old woman. She said no because she didn’t feel well enough. What happens if an aide doesn’t show up when a person is truly bed bound and doesn’t have any family member supervising? I guess they just lay there and wait.

I stayed in bed until 12:30pm that day, until my husband texted me and urged me to push myself to get up. Without a destination or a friend to visit, or a friend visiting me, I am not motivated to push against the confusion and gravity that confronts me as soon as I get out of bed. The enormity of dealing with this when I’m alone is daunting. The chasm between my bed and going downstairs to dress and go through the rigors of the routine – dress, groom, brush my teeth, put on makeup, eat breakfast, is likened to crossing the ocean on a broken raft. For what? To sit alone in my house? But there was a Dementia Alliance International zoom chat support group at 4pm to attend on my computer, and those good friends who welcome me, would not have been happy to see me disheveled in my robe, and unkempt. So I pushed myself to go through the routine and ended up looking presentable. Glad I did as I got to see Paula, Christine, Dallas, Jerry, Deb, Paul, Roger, Bob and Kate. Actually laughed a bit and I had some fun online with my dementia buddies.

*****

I still use the photographs on my iPhone to remember what I did  do on certain days. But when there is nothing to do taking photos outside the patio door of the same view is more of the same and that’s when I know I have crossed the line.

Once a month my husband takes me to The Rubin museum’s Mindfulness Connections program for people who have dementia. That is the highlight of the month, but also a stark reminder that I am not at all who I was. The photos below are from that day, Friday Jan 17. Entering the Lincoln tunnel, my husband at the wheel of his red VW. Passing the famous Chelsea Hotel on 23rd Street, which is being renovated. Introduced by the docents to a painting in the collection at Rubin called Ushnisavijaya and Celebration of Old Age. Kaumari, a repousse (hammered copper) sculpture of the Hindu goddess.

Maureen was there with her husband. Friendly and docile in her Alzheimer’s haze, she doesn’t speak much, certainly doesn’t participate, although her husband does. Scott showed up and I said hello. I would have liked to speak with him, but there was no opportunity. He also doesn’t participate, but I guess as a former plastic surgeon in the earlier stages of Alzheimer’s, he doesn’t have or retain much insight into the artworks. Still I wonder about this because he is able to speak and does have insight and clarity about life in general. He told me he is not afraid to die. said he has no kids, and his wife is dead from cancer. He has no remorse and is ready whenever it happens. Then an older woman, probably late seventies, was wheeled in by her caregiver. She was smiling and friendly, but when she spoke, what she said had nothing to do with anything we were looking at and it was obvious she was in an entirely different world of her own. It disturbed me to see her, pleasant as she was, she was in the museum, in this world, but not in it. I deflected and drew the attention back to the artwork we were looking at, and noted how the way the painting was organized reminded me of the registers used in ancient Greek and Egyptian art. Yes, I was freaked out by this woman who was no longer experiencing a reality that made any sense to me. Yes, it frightened me, because I never want to be like that.

*****

I have become much more housebound, and when Jeanne comes by on Wednesdays, at 2:30, I like going for walks with her. Since she only stays until around 6:30 and we like to play Scrabble, our walks are brief. The last time we went to the park, I spotted this bird sitting on top of a big bush. Jeanne is something of a “birder” and said she thought it was a Warbler. She asked me to send her the photograph I took, and she sent it to a woman at The Audubon Society. Turns out it’s a Mockingbird. A Northern Mockingbird.

I started to draw the bird from the photograph, trying to channel it’s composure, nobility  and strength. It was coming out badly. I was unhappy to see that my drawing resulted in such a stiff semblance of this powerful feathered creature. My ability to capture it’s spirit was nil. I cut out an image of a piece of sky from a magazine, and pasted it over the top half of the bird. Not one of my better images but an image I made nonetheless, so I’m compelled to include it here with a little figure of a wolf howling up at it. The mockingbird is so-called because of its ability to mimic the songs of other birds. In fact, they have no call of their own. This way, they symbolize the power of the voice, its ability to draw or repel others, to make or break situations and relationships. I read that when you encounter a mockingbird, it’s time to stop for a bit and look into your heart for something that’s being left unsaid.

*****

So I looked into my heart and it took many weeks to figure out what was unsaid. I could see it on the list I write everyday. I wasn’t following my heart. Write to Raphael in my handwriting on my list, repeated day after day.

Raphael was my student. The one I gave my all to before I became ill. In fact, I remember telling him that when he graduated I would go into a kind of mourning period. ittle did I know then what would happen to me after he graduated. I would sink into depression and be diagnosed with Alzheimer’s. He studied drawing with me and art history. I introduced him to so many artists, took him to all the major New York museums, and mentored him. A brilliant young man, he is a master of languages. He speaks and writes Japanese, and taught himself Arabic and Hebrew. As my student I encouraged him, but he was also my friend. The last time I saw him was October 2016. He had already graduated and had started his college freshman year at The New School. This was at the same time that I was undergoing neurological tests at Columbia Presbyterian hospital. I had just undergone the Spect scan, and neuropsychological testing, and was told by James Noble M.D. that the pattern in the image of my brain was that of Alzheimer’s., diminished blood flow to my temporal and parietal lobes. When Raphael visited me in the fall of 2016, I was distracted and nervous. I didn’t want him to know what I was going through. I left him sitting at the kitchen island and took a call from my cousin Sandra who was calling me from England. I was on the phone a long time, speaking to her on the 2nd floor of our home, and left Raphael sitting there for the better part of an hour. When I finally got off the phone, Raphael was ready to leave. He tried several times over the course of that year and the next to get in touch with me and to stop by. I always made excuses for why I couldn’t see him, and then I stopped answering the phone when he called. A few months ago he called again, and left a message. I texted him that I would write him an email explaining what was going on with me. Months went by. I didn’t write him. Last Thursday, my husband took me to the hairdresser. As I was sitting getting my hair done, my phone rang, and his name came up on the screen. I didn’t answer it. Days went by and it bothered me. I didn’t want Raphael to think I was ignoring him purposely. I wanted to tell him what had happened to me. I wrote him an email and told him that I had been diagnosed with younger onset Alzheimer’s, and that in 2 and 1/2 years the disease had progressed rapidly, and that I had to resign from my position as the chair of the department in June 2017. A few days later he wrote me back and sent me some of his drawings. This is what I received.

Portrait of Minna and granddaughter Ellie – January 2019

Took the first photo at the supermarket. I WANT MY OLD LIFE BACK.

I drew the portrait of my granddaughter, Ellie, and me, after we visited my son and daughter in law’s home  on December 25, from a photograph my husband took of us. I needed to draw something that brought back some light into my life, because…darkness has descended.

A lot has happened.

No more Ruth. The relationship is over and it ended badly. She said she couldn’t do it anymore. Said she would never see me again. For those of you who have been reading my blog, you know this is a great loss.

This was the woman who told me she would be my friend until the end. She’s a Jehovah’s Witness and said that the devil rules the world. And then she acted like the devil was inside of her. It happened on December 23rd. Two weeks ago. My functioning has gone way down. Without her friendship, I have felt like I’m in solitary confinement. She refuses to have anything to do with me, and it’s NOTHING that I did. She just said, she can’t do it anymore. How to move forward? It has been very hard. I shared so much with her. No one I can visit in this town. No where to go. No safe zone.

My dementia mentor said to be thankful for the 8 months she was my friend. Try not to go to the negative. Appreciate what she was able to do. But I am devastated every day and am very afraid. Now my husband has started to interview home health aides. Complete strangers. I don’t want to have to depend on a home health aide, but I may need to. I wanted a friend. I had one and now it’s over. I did not destroy this relationship. She did. She said she couldn’t do it anymore.

Her friendship was helping me to be more functional. Much more functional. I would walk to her apartment. I would never get lost when I had being with her in her apartment as a destination. I was so glad to have a friend I could visit. It felt so safe.  I thought she understood. That she “got me”. That she had compassion for a poor soul who was stricken with early onset Alzheimer’s. But then I changed again and progressed in this horrible disease. The babbling started. Then she started complaining that using her walker to get here made her body hurt too much. That she can’t come over so much. That she would need to take Uber’s, which she did for a while. Then she got sicker. Macular degeneration, and her blood pressure went up. She didn’t feel comfortable coming here any longer, she said, and she didn’t want me to come to her apartment anymore. So now there’s much more pressure on my husband who is exhausted, often critical and when he can’t handle things, he has meltdowns. I am not able to be alone so much anymore (sometimes it’s hard for me to be alone for five minutes!), and he has limited capacity to be with me. How to avoid his having meltdowns, keep myself occupied, and not cause friction? I am extremely hurt. Abandonment is what has been happening to me over and over, since this disease started. Now this woman who promised to be my friend until the end, has abandoned me completely. She was cruel. She went from being the kindest and most compassionate, to being the coldest and cruelest.

People turn cold when dealing with Alzheimer’s. Spouses abandon their loved ones. Friends abandon friends. Why are people so cruel?

I know that everyone who has Alzheimer’s is different and declines differently and at different rates and speed.  I know that the brain atrophies in this disease, and that is the reason for the changes. Two years ago I had mild cognitive impairment. It has progressed to full blown Alzheimer’s and progressed rapidly. I am scared. I know that I am dying. This is a new year, and I’ve been experiencing the changes that come with late moderate stage. Nonsensical speaking, talking to myself, great difficulty walking, I lumber along and often shuffle, difficulty chewing and swallowing. Now I have difficulty getting up from a seated position and often need help to stand up.

I try to think, but most thoughts are gone, the ability to think things through is gone. There is mainly emotion. And now I am devastated because the only friend I had will never see me again. The only relief is when I am asleep but I don’t sleep for over 5 hours, and often 3. The last time I had 7 or 8 hours sleep was over 3 years ago. I have prayed to G-d to take me, and then been so scared when it feels like I am actually dying. When it’s been hard to breathe, when tight bands constrict around my chest and I feel like I’m having a heart attack (this happened the other night in bed and I cried to G-d, “can’t you take me without causing pain?”.

I get scared. I’m gradually  regressing to an infantile state of mind. Babies don’t think, they feel.

*****

Finally did get up with my husband’s help today. No way around it, had to shower and wash my hair because I was dirty. Had to push through with whatever I have left. showered and washed my hair. A major victory. My husband had to sit in the bathroom with me. He needs breaks and went out and I managed to get the adult bib on and sat down to the breakfast he left for me. Ate slowly, chewed deliberately, swallowed carefully. My husband told me if I am going to be able to walk outside I will have to get moving. I dried my hair thoroughly with the hairdryer, put on my sweater and down coat. Managed to zip it and waited for him to take me out. (As I read these words- “waited for him to take me out”, I am dismayed that this is who I have become, that I need him to walk me, like a person would walk a dog). When we got back I asked him if he would sit with me as I did puzzles. Still have to do things to pass the time. Still have to get through each day. At this point, I can still do puzzles. Real physical puzzles made by Ravensberger, designed for little children ages 4+. I did each of these twice today.  I completed both of them twice, pulling the finished parts closer together, and somehow fitting these together with the parts already done. I persevered. My husband sat next to me and did something on his computer. I can see that he will need to find activities for me in order to get any time for himself. As he sat there he ordered another Ravensberger 60 piece puzzle on his iPhone.

I was resilient until this disease took over. I could shrug off difficult things and recreate myself. If something didn’t work out, I would plan my way out of the quagmire. This was possible while I was still working. I had goals and was always very busy. Before I progressed. Once I had to retire from work and could no longer do the things I did independently, the feeling of futility and emptiness generated by a childhood that had me always looking for love, came back to haunt me. I became dependent, helpless and with an endless need for attention. Maturity guards against these feelings, and while I was living a worthwhile productive life and succeeding in my career, I thrived. If a relationship didn’t work out, there were other relationships. If a goal could not be attained, there were equally satisfying goals to go after. There were self help books, therapy, interesting new people to meet, ways to thrive. Now all of that is gone. Now there is Scrabble, drawing, crossword puzzles, television. The simplest things are hard to do. Dressing, going to the bathroom, getting out of bed and brushing my teeth. I am regressing to a state of infantilism, and I have been fighting this as much as possible. I am still fighting this unbeatable foe, but I’ve needed support. Ruth was my support. My encouragement. I needed that and now it is gone. I warned myself that I was becoming too dependent on her. Prescient.

*****

Over the past few days I have noticed that I do not know where I am when I go out walking with my husband. After a certain distance, I am able to recognize landmarks, but can’t connect the dots and fear getting too far away from my house on my own. I have been going for walks with my husband. I haven’t dared to go further than a few blocks to the park when I’m alone. I remember being confident, dauntless and going everywhere myself. The last time I traveled alone was on the PATH train to get to the Rubin museum. That was around seven months ago. I still know the route, but do not have the ability to take public transportation alone anymore. I am now afraid. Very afraid. I have little stamina, and am getting weaker. Can’t even walk that far. I have no control over what is happening.

*****

My husband took me for a walk downtown to see where the senior citizen center is located. It felt like a long walk, and I didn’t really know where I was. He was investigating whether they have any day services for peoples who have Alzheimer’s. They do have Bingo, and bus trips to the mall. But this isn’t a service for someone with a disability like Alzheimer’s. It’s for senior citizens who get bored and lonely, and need companionship and something fun to do, to break up their week, and give them opportunities to socialize. If I were there alone, I would panic and might start babbling nonsensically. People would think I was crazy. I am NOT crazy. I have a disabling disease that is causing major cognitive impairment. There are NO services in my community for people who have this disease.

I can imagine it is very hard to be friends with someone who is losing their mind. Hard to be friends with someone who one minute makes sense, and the next may be babbling incoherently. I have been advised to take the high road. To be thankful for the eight months that she offered her friendship, and opened the door to her apartment, and welcomed me in. Thought that since this is my blog, I have every right to spill out the details. But I see that no matter who it is, even the most noble person, does not want to give their life and time over to a disease that is robbing another persons life, changing their personality, their ability to function well by themselves, to speak and interact. No one wants this. There is no peace or joy in it. Yet I must express how sad I am. How losing this friendship has made me feel like I am in solitary confinement. No one to talk to all day, except my husband, when he willing, no socialization, no friends except for virtual friends on the computer Zoom chats with members of Dementia Alliance International and Dementia Mentors, and that is only for a couple of hours a week. These people are wonderful, but they also have their own garden variety dementia. Only one seems as progressed as me. Some have trouble following a conversation. Some have trouble walking too, and use walkers, but do not have much cognitive impairment, no memory loss. Lewy bodies, vascular dementia, and some with very mild Alzheimer’s, that doesn’t seem like Alzheimer’s to me at all. All of them are braver than me. I am Chicken Little with Alzheimer’s, and the sky keeps falling.

*****

Her sister, Jeanne, still comes on Wednesdays. She returned my keys that I’d given to Ruth, but I asked her to hang onto them in case of emergency. I hope that she won’t let what Ruth did stop her from visiting. I know she likes to play Scrabble with me when she comes. What happens if I can no longer play Scrabble? Will that mean she won’t come here anymore? Maybe I’ll still be able to play gin rummy.

I took a photo of her sweatshirt when she was here. At least I was able to read and understand it and see that it’s funny.

So here are the photos that I take every day when I’m finally up and dressed and ready. They are all different days and yet they are also all the same.

This one is different. I think of it as a sinking American flag.

And here is my husband preparing food for me for the next days, assembly style. He’s always pragmatic.

Finally these three tomatoes caught my eye, and I told my husband that I would like to draw them. I told him I thought they were beautiful.

Beauty is in the eye of the beholder.

Love is blind.

I thought I had a friend.

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…