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.
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.