The days roll by. I had a birthday on March 28 and turned 64. Passover and Easter arrived and I marked this period with reflections of what this means to me. I’ve been writing but was unable to complete this post, though I started a week ago. I am back again, in a repetitious cycle that is part and parcel of what it has been like for me to have Alzheimer’s.
Albert Einstein is broadly credited with exclaiming “The definition of insanity is doing the same thing over and over again, but expecting different results”.
Passover marks the commemoration of the emancipation of the Israelites from slavery in ancient Egypt. This held a lot of meaning for me, as the matriarch in my own family with my kids and my husband, and earlier as a child of Jewish Holocaust survivors, my parents who marked this holiday with rigorous celebration.
As an adult, I would clean my home of “chametz”, (any food product made from wheat, barley, rye, oats or spelt that has come into contact with water and been allowed to ferment and rise), spend days shopping, and nights preparing a feast, and each year we would take out our Haggadahs (Haggadah means “telling,” as its primary purpose is to facilitate the retelling the story of the Exodus from Egypt).
I’ve experienced a life abundantly rich with family coming together for this holiday.
The memories of sharing many years of seders with my parents, my husbands uncles and aunts and cousins, and his late parents are in my head like virtual snapshots. My husband’s aunt Harriet and uncle Jerome in their home in Englewood, New Jersey, welcoming us into their kitchen where they had both prepared a feast. Their warmth, the hugs, the colonial dining room, the feeling of love accompanied by great food. Then there were elegant seders at my husband’s wealthy uncle Marty and aunt Marsha’s home in the ritziest part of Long Island, where I never felt I quite fit in. I remember the many trips to my sister’s home where our kids came together and we all got along. Over the years, I witnessed her change from a sophisticated New York actress to a sheitl wearing Orthodox Jew (sheitl is a wig worn by some Orthodox Jewish married women in order to conform with the requirement of Jewish law to cover their hair, and a part of modesty-related dress and signifying humility), and our relationship changed. She implored me to wear long sleeves and a long dress, and be like her, which I was not. Things went terribly wrong along the way. My parents and my husband’s parents got sick and died, Harriet died, and then Jerome, and the cousins splintered, and relationships suffered. My sister and I fought miserably over my late father’s will. I see now that all of it was so damaging.
I want to make peace with it all now. No more suffering the slings of the past. I want to go in love now. Forgive myself for hurting others, and forgive others for hurting me. Let us forgive each other and forgive ourselves.
For this Passover, my daughter went to her boyfriend’s uncle’s seder in Long Island, as she has done since I became ill. My son invited us at my urging to see him and his family, in their suburban home in New Jersey. My daughter in law ordered sushi, and there was no Seder. We brought matzo and my adorable granddaughter, who is two and half, played with us, and demonstrated her ability to play with puzzles, speak in Russian and English and name everything she was doing. She is a joyful bundle.
The rituals are gone for now. I am no longer the matriarch who can bring the family together, and orchestrate the Seder. I am sad about this, but thankful to simply have had the opportunity to see my son, his wife and my granddaughter. Just to be together is enough now.
The last seder I held in my home was in 2014. That was four years ago. I remember knocking myself out preparing a feast, and my beautiful daughter preparing some delicious dishes too. It was a joyous event and friends and family gathered around. I was strong and resilient then. This was the year before my mind started to spiral. The year before Alzheimer’s came for me.
Last year I went to a Passover seder at the Chabbad, the center run by the Lubavitcher Jewish rabbi and his family in my city. I had already been diagnosed. This year I was not able to go. I could not comfortably sit with strangers and speak with them. I no longer know how to dress up for an occasion like this. Taking a shower and staying clean and simply getting dressed is a more critical concern now, and my wardrobe has been reduced to what can be managed from the hanger I set up before getting to bed for the next day.
Dementia will cause personality changes to individuals, and can affect their moods as well. Those with dementia are often fearful or depressed and experience severe mood swings.
My aide, Keith, wrote me about how my writing about people in my past reminded him of Bob Dylan’s song, Tangled Up In Blue. I made the drawing of Dylan’s profile, inspired by the designer, Milton Glazer’s famous image of Dylan, and intersected it with a drawing of a profile of myself made from a photograph of me when I was sixteen.
They’re an illusion to me now
Some are mathematicians
Some are carpenter’s wives
Don’t know how it all got started
I don’t know what they do with their lives
Fate and Acceptance
The other night I watched The Theory of Everything, on TV – the film about the life of the late scientist Stephen Hawking, the world famous English theoretical physicist. His scientific works on gravitational singularity theorems in the framework of general relativity, and the theoretical prediction that black holes emit radiation, are beyond my comprehension. What did I ever know about physics? He died on March 14, at the age of 76, and left a legacy that would have been startling for a normal bodied genius. He had ALS (Amyotrophic Lateral Sclerosis) for 53 years and lost all ability to move, speak and take care of himself. How did he do it? Hawking was a determined and stubborn person. On many occasions he got through serious medical issues with sheer determination. This same determination could make him very difficult to work with. But it could also push research projects forward. He would refuse to give up on seemingly unsolvable problems.
ALS obviously did not rob Hawking of his cognitive ability (one fifth of people who have ALS do develop FTD and dementia). In fact, he was one of the very lucky ones with ALS. His mental processes were not altered. While ALS is a neurodegenerative disease and some who get it do develop dementia, he did not. This allowed him to be self determined and direct his care and communication until the end. It enabled him to be a genius even though he could not feed himself, clothe himself, walk, or go to the bathroom by himself. He was able to find the engineering support needed to create a voice assisted program so that he could talk through ‘the computer’, using a speech-generating device or a voice output communication aid. Without finding a way to communicate, he would not have been able to bring forth his ideas.
Once again I think about Michael, the man with Alzheimer’s I met at The Rubin Museum, who is a quadriplegic, incontinent and mute, who I feel great compassion for in his stark progression and survival. The last time I saw him, he tried to say something to me when I greeted him, although it was completely unintelligible. I said to him, “Michael, I know you are trying to say something, and I would like to understand what it is”. I wonder if a voice activated device could somehow decipher what Michael was trying to say. He was trying to say something! His aide told me that he had been able to learn and say her name! Michael had been a very well off attorney, a partner in his firm, and has private home care in his apartment in New York. That he has an aide who takes care of him 24/7, feeds, bathes and dresses him, teaches him to say her name, and other words, and stimulates him by bringing him to The Rubin, is as good as it gets for a person at his stage of Alzheimer’s. This is the reality of economics and the progression of this disease.
Alzheimer’s affects each person who has it differently in that rates of progression vary wildly. Some get it early, unfortunately like I did, and not all, but some progress very very early and rapidly, as Amy Norton did.
Amy Norton was a beautiful woman diagnosed at age 43. She died of Alzheimer’s on March 22, the first day of spring, at age 48, having lived with the disease for five years. I followed her story, aware that she never really had much awareness from the time she got diagnosed until she started to lose memory and cognition. She and her husband had two young children, a daughter who was thirteen and a son who was eight, at the time of her diagnosis. https://www.democratandchronicle.com/story/news/2018/03/22/early-onset-alzheimers-dementia-amy-norton-pittsford/450041002/
On The Waterfront, is an Academy award winning movie from 1954, the year I was born, that was made in the city where I have lived for forty years. It featured stars Marlon Brando, Eva Marie Saint, Rod Steiger, Karl Malden, and Lee J. Cobb. Directed by Elia Kazan, one of the most honored Broadway and Hollywood directors, the script was written by the legendary screenwriter, producer and novelist, Bud Schulberg. He was the late uncle of a woman I knew when I was trying to get my Lilliput movie produced. At the time, I thought that finally I would get a chance to make the film. She introduced me to a young woman, a producer who was interested in my script and the project, but whose newborn baby was struggling to thrive. After a few months of back and forth, she stopped being in contact. The baby’s name was the same as mine- Minna.
Today, On The Waterfront is considered one of the best movies ever made. In it, Marlon Brando plays the washed-up boxer turned longshoreman, Terry Malloy. While I take the line out of the context, Brando playing Terry confronts his brother Charley (played by Steiger) an ethically-challenged lawyer who works for the brutal mobster who runs the local longshoreman’s union, after he witnesses a fellow longshoreman murdered by the brutal mobster’s thugs. “You was my brother, Charley,” he says. “You shoulda looked out for me a little bit. You shoulda taken care of me, just a little bit, so I wouldn’t have to take them dives for the short-end money…I coulda had class. I coulda been a contender. I coulda been somebody, instead of a bum, which is what I am.”
I coulda been a contender.
I had dreams and hopes, to be somebody. I thought I was very talented and hard working, and I had achieved a lot, but never got that big break. No matter what I did or how close I came to the elusive dream of breaking through, real success eluded me.
Now I am changing in ways so extreme that I do not recognize myself. Where I was strong, I am now weak. Where I was brave, I am now afraid. The simple act of going somewhere outside of my home and comfort zone, is daunting. I get lost, anxious, disoriented. I had been a New York art dealer, owned a gallery, was a world traveler, an American Fulbright, a professor, a woman who enjoyed meeting people, spoke to large audiences of people about my film work, enjoyed expounding on art history, film, Jewish history, I enjoyed teaching – now I get disoriented walking on the street alone, concerned that the confusion and brain numbing may create lapses and I will not know where I am. I see my body and brain changing every day. There are new concerns that my immune system is failing and I may have cancer. My immune system is breaking down. There are distinct physical signs and an appointment has been made with a specialist. This has all happened so quickly.
Four years ago I was thriving or so I thought, and having fun looking forward to achieving my dreams, and watching my adult children blossom and thrive. Enjoying each new challenge, and embracing each day. Now I struggle to get through the day and take care of my own needs as best as I can. It’s a challenge now remembering how to eat, dress, and walk. The most basic things that make a person function. But I remember that I wanted to be somebody and felt before this happened that I still had a chance.
Do I still have a chance? I have a chance to accept this and ask for prayers to help me accept this part of the journey.
Acceptance rather than regret is vital now. I see it is the time to listen to others who have lived with neurodegenerative disease, to find my way to deal with the grief – finally. It is essential that I do this now because left to my own devices, I keep failing to find the courage. Listening to others who have forged the way. Some are no longer here, But we have their recordings and writing to reflect on, and it’s in their example, that I find the strength, the fortitude, to accept what is happening.
Brian LeBlanc who has been diagnosed with Alzheimer’s, and is in the early stages, hosts an online video show called This Dementia Life https://www.youtube.com/watch?v=kV3e9Atn18M produced by Mike Bellville. I’ve had the pleasure of meeting these two men in Zoom chats, and love that they put this out there. The interviews have given me a reality check when I drift too far into my own head.
In Brian’s interview with Greg O’Brien, the author and journalist who has Alzheimer’s and prostate cancer, and wrote, Living On Pluto: Inside The Mind of Alzheimer’s, Greg says “Grief is important whether it’s cancer, or Alzheimer’s, or trauma in the family. Go through the grief, but don’t lie down”. He likes to quote the great Bugs Bunny, who once said, “don’t take life too seriously, because no one get’s out of it alive”. Brian counsels, “when you have a pity party, there’s only one person at that party, and that’s you. Nobody else wants to come to that party. It becomes very boring, and most of the time you pull yourself up”. Greg says, “no one wants to talk about Alzheimer’s, it freaks people out, but we need to get comfortable and talk about this disease, and push the damn stereotypes aside”.
Greg’s book inspired me to come out and write about my experience with having this disease. Living On Pluto: Inside The Mind of Alzheimer’s is a book written by one of the most eloquent writers I have ever read https://onpluto.org/the-book
To my mind Greg is a slow progresser, who fights the disease. He has retained his sense of humor which I believe is a hallmark of his high intelligence. He has written “my mind used to be my best friend, but now I see no chance for reconciliation”. His exit strategy is prostate cancer that he is not treating, because he and his family have seen the end place of Alzheimer’s. He says this is because he’s not going to a nursing home.
My GLORIOUS trip to The Alzheimer’s Association Support Group in Manhattan
This was the second trip there. The first was the prescreening. This was the first support group meeting. Admittedly, the photos do not look glorious. It’s the feeling I had inside of being able to attend. The crazy sense of victory of accomplishing a journey that I didn’t think I’d be able to make. I didn’t think I would be able to get up at 7am last Thursday, and be dressed and ready to go with my wonderful daughter, who had arrived the night before to take me, but I did it! We got to the bus stop by 9:30am and waited with the with others. It was raining. I’ve been so weird about rain and getting wet, another crazy symptom of this disease, and how it’s affected me, but I had my umbrella open over my head, and my daughter had hers, and it was okay. We boarded the bus together, a large coach with padded seats, and we sat together, she texting on her iPhone, and me playing games on mine to help distract me from what I perceived to be too much stimulation. When we got to the Port Authority, I knew what to do – go out the 8th Avenue exit and get a taxi. This time the cab driver had to take 44th Street, rather than 42nd Street, and I was calm about it, with lots of time to get there, there was no rush. Then the procedure of getting through the sign in process where we had to show identification to gain access to the elevator to the 22nd floor. That was easy. Once inside the Alzheimer’s Association offices, we were greeted by the group leader who led us to a large room with chairs set up for us. For the purposes of respect for anonymity, I have included only photos of the back of people’s heads. Accompanying the people who have Alzheimer’s, were their care-partner’s, mainly spouses.
The presentation commenced in which the group leader talked about her goals, which included photography classes and learning to use a camera, a future exhibition of the group’s photographs, a music class, dancing and tai chi. I have no idea if I’ll be able to learn how to use a different camera, since I only know the process of using my iPhone camera. I know that learning and retaining new information is very hard for me. I had started to learn some tai chi from a private instructor last summer, and I wondered if I could retain the knowledge of the postures. No matter. I figure as long as I can show up, I can try to learn.
Then the group went into another area for refreshments, cut fruits and bagels, generously provided, and the caregivers met separately. We, the actual people who had been diagnosed with Alzheimer’s, were left to meet each other. Two were in their late sixties, but most were in their seventies, some late seventies. Everyone was quite amiable and chatty. There was Ed, Liz, Robert, Fred, Suzanne and two grey haired men men named Bob, one obviously older, likely the oldest among us, but who knows – looks are deceiving. Liz, who is her late sixties, has an aide, a Columbian woman who takes care of her. She was a well dressed European woman, who one would never know from speaking with her, has AD. Robert, a large man possibly around seventy with dark hair, was quite talkative and seemed comfortable with himself. He struck me as a little odd in a good way. He wore a suit jacket and was reasonably well dressed. Suzanne has a lovely open face, blue eyes, and a red streak on her left eyelid. She lives on the upper West side, attends movement and yoga classes, cooks and shops. It was hard to get a read on the two Bob’s. They were fully able to converse, and both appeared to be quite oriented. I gravitated to Ed, a slim casually dressed African American man, who had come there by himself. He told me his mother had had Alzheimer’s in her seventies, and that he took care of her until she died. He said she had it for five years after her diagnosis. He is single, lives alone and takes care of all of his own needs – food shopping, cooking, finances, everything a normal adult person does. He was obviously in the very very early stages.
Aware that I am younger onset, and my disease has progressed rapidly, I see that I am different from these people who all seemed relaxed and accepting of their lives and diagnosis. I’ve read so much about younger onset, and know that it is often experienced much more rapidly than late onset. In fact, my neurologist has called it a variant that is like a different disease. With me there has been so much anxiety and agitation, along with loss of abilities and motivation. These folks in the group appear more accepting of what this disease is and how it’s affected them. It looked to me like theirs was a graceful acceptance of aging.
The group of us with Alzheimer’s were asked to meet in the other room, where the chairs had been reassembled in a circle. Robert talked about how having been in AA was his source of support, and how he was able to practice acceptance of his diagnosis because of what he’s learned in AA and his sobriety. I recited the Serenity Prayer, and he and others chimed in. The older Bob voiced his calm acceptance, with a little smile on his face. The younger Bob asked questions and looked a little tense. Suzanne was relaxed and liked to talk about all the things she still does.
As a woman who has lost so many of my instrumental activities of daily living, I was reluctant to share about the particulars of my own experience. I know I have AD and have experienced progression. When it was my turn to speak about acceptance, I spoke about the wonderful online dementia communities I have become a part of. No one in the group had any idea about Zoom chats and online dementia support group communities. I talked about how making art and writing my blog is my mainstay and helps me to practice acceptance. That’s not far from the truth.
After the meeting, when my daughter and I got onto the street, I opted to walk to the Port Authority rather than hailing a cab. I’m so glad we did. I got to see and photograph things that were a part of my life before – the glorious New York Public Library, a walk through Bryant Park. I saw a graffitied train car displayed in a huge windowed store front- a relic of the past. Graffiti on NYC train cars was outlawed in 1989, but persisted for a while. Now artists who try to spray paint on train cars are fined tens of thousands of dollars, so it’s not likely to happen. We continued our walk towards 8th Avenue on 42nd Street, passing the MacDonald’s with an overhang which is a spectacle of Capitalism and light emitted from hundreds, maybe thousands of light bulbs. We passed Madame Tussaud’s Wax Museum, where a life size wax sculpture of Pharrel Williams greets visitors, and his rap song, Happy, blasts cheerily onto the street.
I thought of how this rap song has signaled change in my life. I listened to the twenty four hour version, the upbeat four song minute song played on a loop, with each cycle introducing a new dancer (or dancers) at a different location, in 2013, as I worked to mat dozens of student artworks for an exhibition of historical figures. The song and images of dancers played on an overhead monitor all night long as I worked. I was alone in the art studio and took breaks and would dance in the middle of the room, cheered on by this song. Now when I visit the memorial page for Susan Suchan, a woman I met through Dementia Mentors, who was a huge positive force in advocacy for people with dementia through Dementia Action Alliance and Dementia Alliance International, Pharrel’s song Happy plays continuously. Susan had Primary Progressive Aphasia and died in January after advanced cancer accelerated her journey. She left this world acknowledging how blessed she had been, and how kindness and love were her redeeming factor. She taught me that between diagnosis and death there is LIFE. I came into the dementia world extremely depressed, and Susan told me depression is a cloak she would remove. At that time I did not believe that this was possible. I am sad and I am tired, but I am filling up with love in this part of my journey, and it is because my spirit has been buoyed by those who have held hands with me. Many others have showed me the way, and I want to thank them.
I walked to The Port Authority, losing my way briefly because I did not orient myself well. We came in from another entrance and rather then turning left to go to the bus platform, I turned right. I caught myself, alarmed momentarily. Then we proceeded to the platform. I was happy to have been able to take the journey, and waited patiently for the bus. Even this moment of waiting for the bus is cherished. Everyone in the next photo appears to be looking at their phones, save for the man standing by the door, and the man at the left, who is cut by the left edge. To me, he looks like he is smiling.