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.
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.
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/
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…