I was 14 years old and ironed my hair at the kitchen table. My idols were Cher, the American singer and actress who is now sometimes called the Goddess of Pop and Twiggy, the British cultural icon who was a prominent teenage model in swinging sixties London. Twiggy painted on little black lines on her lower eyelids to mimic eyelashes. I copied that, and painted black eyeliner on my upper eyelids and inside the crease above my eyes. I applied lipstick and powder to my lips to whiten them. I remember the outfit, a matching set with a jumper that was miniskirt length and grazed the middle of my thighs. It was polyester and the backing inside the jumper was a shiny blue plastic. My mother bought this at Alexanders department store on Fordham Road at my urging. My parents never objected to the makeup. In their world, girls who were pretty had a better chance. They didn’t discourage all the primping, though they probably should have focused more on what was inside my head. Save for a set of an Encyclopedia Britannica, and piano lessons in which my mom insisted I learn to play tunes from Fiddler of the Roof, they were not terribly concerned with my intellectual development. That was what school was intended to do for me, and I was pretty smart. I had skipped 8th grade at Elizabeth Barrett Junior High School, an all girls school. I had been in the SP program, an accelerated program for those who excelled at taking the standardized tests validating their advanced academic ability. To me the other girls in the class as nerds, I did not connect with them. I had one close friend in that class, Helen, also a child of Jewish Holocaust survivors, who was a ballet dancer with long wavy golden hair. Her parents owned a candy store near Yankee Stadium, about a mile from our home. The art teacher at EBB took her out on dates and fondle and kiss her, she told me. Of course, today that would be considered illegal. She and I applied and were both accepted to The High School of the Performing Arts, where I attended 10th – 12th grades. I caught the eye of Claude, whose parents were French Jews, and whose father was a theater producer. He was my first real boyfriend. My parents adored him. Little did they know what we would do when we went to his parents apartment in Manhattan on our “dates”. I stopped looking like this photo after Claude and I broke up. I let my hair wave and curl naturally and stopped wearing makeup, and wore jeans with colorful patches I sewed on. I started to hang out with the “cool” kids at PA, the “freaks”, who smoked pot and experimented with LSD.
Many of the kids at Performing Arts had wealthy famous parents who were actors, actresses, producers, directors. Their families lived on the Upper East Side of Manhattan. One girlfriend ended up marrying the director who won an Oscar for Rocky, and directed The Karate Kid. She became a minor Hollywood movie star. Another girlfriend who came from a more modest Jewish background, and was a Queens girl who grew up in the Bronx, was highly self disciplined and would never have been the kind of teenager caught smoking in the school bathroom (as I did). She became an ultra famous actress, and has starred in many major films and is today a huge Hollywood star. She ended up marrying a billionaire, followed by an acrimonious divorce. He reportedly paid her 60 million in the settlement.
Maxine was my best friend before Performing Arts high school. Once again she is my dear friend who knows about my diagnosis, and emailed me a scan of this 40 year old photo yesterday. We attended the same public elementary school and when she skipped 3rd grade, we ended up together in Mrs. Friedman’s class. She was a maverick, a very smart kid, a whiz at math and science, who was not a nerd. I picture her now in her black fishnet stockings and white go-go boots. A neo-punk genius! She lived upstairs in our pre WWII, six story elevator building on Morris Avenue in the Bronx, in apartment 5E, directly above mine.
Her mother had white blond hair, which she wore in a French twist. Her beautiful broad face beamed with joy and kindness. She possessed a zest for life. Her dad had lustrous dark hair and reminded me of Desi Arnez, who played the character of Ricky Ricardo on the I Love Lucy tv show. He had escaped and avoided the Nazis occupation in Belgium. Her dad repaired TV’s and her mom sold insurance from a spacious store where she worked with her parents, the grandparents.
Maxine’s parents were crazy about each other. There was a palpable feeling of love between them. I sensed this and felt the implicit emotional difference between their and my own parents relationship. My perception was that theirs was an easy going home with a balance of power between the husband and wife. My home life felt constricted by patriarchal rules. My father felt powerful to me and could be loving and scary within the same day. I never knew when he was going to be gentle or rough. I loved him when he walked in the door in the winter, took off his herringbone coat and I would fling my arms around him and feel his cold skin on my face. My Daddy. But then he would sit down to dinner, served by my mother, and if I started chattering about heaven knows what, he would say, “when I eat everything is dead”. I knew what that meant. He wanted dead silence.
To me Maxine’s was what an American family should act like. Parents who adored each other, and kids who were encouraged and given every opportunity to develop themselves. Maxine was a girl scout and took ballet classes, which I would often accompany her to, and watch her as she danced. Her older sister dyed her hair platinum blond and played the electric guitar. She listened to Frank Zappa and The Mother’s of Invention records on their victrola. Everything that was fun and inventive emanated from our friendship. We set up a rope and makeshift pulley between our two bathroom windows, where we exchanged materials to fabricate sandals made from cardboard and elastic, which we wore on the street. We would hang out in the bedroom she shared with her sister, where she would turn on the black light and our white T-shirts and teeth suddenly would glow in the dark, and the fluorescent posters would come alive with secret symbols and slogans. I didn’t have a bike, but Maxine had one, so I used to borrow her sister’s bicycle, and we would ride together down the steep hill on 184th Street, past the elevated subways on Jerome Avenue, into neighborhoods beyond fringe of Fordham Road and the Grand Concourse, which sandwiched our block. This friendship opened up my small world and gave me entree to a family that was so unlike mine. Her mom was ebullient and oozed with enthusiasm and ideas. She had married at the tender age of 17, and told me that having a preteen and teen daughter allowed her to have so much vicarious fun. She’d host parties for us where we dipped and made candied apples. We could invite boys over from the neighboring all boys junior high school, and play Spin the Bottle. There was no moralism about liking boys and having fun. She encouraged our curiosity. She loved her husband, her daughters and her life. The smell of Chinese food would waft through their apartment on weeknights, and I marveled at the little white containers of empty Chinese takeout scattered over their kitchen table. The informality was so comforting to me. We never ate takeout food and I’d never tasted Chinese food before I met Maxine. They had a Siamese cat named Sandy. I never met anyone before who had a pet cat. To me their life was exotic. What was actually quite normal for an American family of that era – take out Chinese food, a working mom in an urban setting, an older sister who played the guitar, a pet Siamese cat, a living room with a sectional couch, preteen parties – all of that was so new to me, so colorful and flamboyant.
Maxine came to my wedding in Florida in December 1976. Regretfully, I lost contact with her all those years after. Her family moved to Coop City, on the site of Freedomland, a former amusement park, south of the Hutchinson River, built on unspoiled swamp land. She attended The Bronx High School of Science and I went to The High School of the Performing Arts. We went our separate ways, and when we reconnected many decades later, I learned that she’d graduated from the top law and business schools in the country. She became an attorney and businesswoman involved with early digital technology. Her mother had died at around seventy. I learned that she had Parkinson’s disease. Maxine sold her New York City apartment and moved to Florida to take care of her, and put her own life and career on the back burner. Today her dad is alive and well into his nineties and still independent. The last time I saw Maxine was in 2015, at the new Whitney museum in downtown Manhattan. The symptoms of what was to be diagnosed as Alzheimer’s were just beginning. I thought it was a relapse of major clinical depression. I cried as we sat together in the cafe. I had no idea what was in store for me. I was having a very hard time, but I thought I would recover. It’s three years later and I can’t travel alone, have trouble with taking a shower, am confused with the steps of getting dressed and preparing a meal. Walking is getting harder for me, and my field of vision has narrowed. My husband is now my care-partner, and I am on Security Security Disability compassionate allowance for younger onset Alzheimer’s.
There is my life before Alzheimer’s, and my life after. These two lives do not resemble each other at all.
The world I occupy now is small, and my ability to navigate through this much smaller world is emotionally painful and physically and cognitively disorienting. I still live in the same place, the same house, the same city. Everything is much the same, except for me. My family members are devastated by all of this and my once optimistic family members are splintered and adrift. I was the tough one. The survivor who no matter what, could and would make lemonade from lemons. My husband is now a reluctant caregiver. He is depressed and perpetually annoyed by his former vivacious and independent wife becoming someone else. Someone he has to prepare meals for, and accompany to all appointments, and take for walks to the park. I have part time home health aides who provide companionship and help with housekeeping.
In Alzheimer’s there are fast progressers and slow progressers. Dammit, I appear to be a fast progresser https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3223623/
I no longer feel secure and grounded in my body, in the world by myself, and on the street where I walk. My balance is off. I veer to the left and shuffle my feet. I am embarrassed by how I eat, chewing and swallowing consciously so that I don’t choke. I walk slowly and younger people come up behind me and pass me on the street. When I see people with their dogs or mommies or nannies with baby carriages, they present to me as obstacles I have to think about maneuvering around. Things appear hyperreal. Too sharp and too close. Some days I have double vision and there is a “ghost” image around many things that I see. When I went to the local health food store with my husband, ten blocks away, I learned that people should stay on the right side of the sidewalk, and pass each other to the left as they walk towards me. Did I intrinsically know this before? Did I forget this?
Did I have mild cognitive impairment before the Alzheimer’s struck? Anosognosia (impaired ability to recognize the presence or appreciate the severity of deficits in sensory, perceptual, motor, affective, or cognitive functioning)? Was it going on for years? I did have trouble balancing my checkbook. I thought it was because I wasn’t adept at math. I did hoard clothes, papers and books. I did forget to delete emails, and had thousands of undeleted ones. I did have many different passwords and had them saved on my computer. I did not suspect anything was amiss, and I knew nothing about Alzheimer’s. I simply thought I had too much on my plate and was working too hard, and had workarounds for my difficulties with keeping track of information. By 2014 I was living virtually alone, my daughter had moved to an apartment, my husband was living in an apartment in Connecticut near the company he works for, and showed up on weekends, and my son had gotten married and bought a house in the New Jersey suburbs. No one in my family had a clue that anything was particularly wrong with me. As long as I was working, functioning, cooking, shopping, hosting dinner parties and holiday events, socializing with friends, there was no reason to pay attention. Everyone was living their lives, chugging along.
After all, I had been a world traveler who navigated through countries and cities with gusto – all over Poland, Israel, the Ukraine, Germany. I saw Paris, Rome, Athens. I accompanied over a dozen students on cultural trips to cities and countries in Europe. I went to Manhattan several times a week. I had been weight training and bench pressing 100 lbs, and riding my bicycle a few miles a day when this started to happen. I was teaching 10 classes of art history, various art studios with different materials, set ups and methods, including sculpture, painting and drawing, from beginner to advanced. I had taken teaching as an adjunct at a prestigious university. There had been a long history of depression and anxiety, and I had been on and off of antidepressant medications for years, yes, but I did not have cognitive impairment. Or did I?
I was pre-screened for an 8 week Early Stage support group through the Alzheimer’s Association that is located on 42nd Street across the street from Grand Central Station. I was accepted. It’s for an 8 week support group that meets at 11 am once a week. My daughter accompanied me to the prescreening. I knew how to get there, yet I couldn’t go by myself. We took the bus to the Port Authority, and a taxi going East on 42nd street.
The magnificent Chrysler building – going East on 42nd Street
I met with a lovely young woman who will run the group, and understands that each person with Alzheimer’s is different and that the disease affects us differently. She seemed surprised when I told her that I needed a lot of support getting there, that I have trouble dressing, preparing meals and haven’t been able to take public transportation by myself. I was surprised by her surprise. I was concerned that I may not be early enough in the disease to qualify. I asked her about the support group, and what the people in it are like. It sounded to me like they are slow progressers. One still mentors as a teacher and is extremely active and engaged. Two still work. Yet to my amazement she accepted me. The fact that I was quite conversational, not at all withdrawn or confused during our meeting must have been encouraging to her.
The issue that I’m grappling with now is that the group meets at 11am one day a week. For me, getting ready and being there on time will take hours. My walking is slow and I never know what to expect as far as weather, which derails me if it’s bad. Things like rain and snow throw me into a panic now. I get cold, overdress and overheat. I get cold and underdress and start shivering (Yes, neuropsychiatric issues of Alzheimer’s, I agree). I have not been able to get into bed and fall asleep until 1am at the earliest. My Circadian rhythm is all messed up. I can have the best intentions and get into bed much earlier, but I lay there for hours unable to fall asleep, and when I finally do, I wake up an hour later, finally fall back asleep and then wake up at around 9 am. I have a very hard time getting out of bed, starting the routine, numbers 1-4 on my list, that I have to write the night before, in order to direct myself/ remember what to do. This includes eating “breakfast” and taking the medications, and getting dressed. The earliest I’ve been able to be “ready” recently is by 10:30 am. But I would have to be there by 11am! That means I would need to get up by 7am and push myself very hard to be ready and out the door by 9am, 9:30 at the absolute latest. Then there is the issue of who will take me. My husband fortunately has consented to take me to the first meeting, and he is good at keeping me on tack through the steps to be ready. The first part of the first session is a meeting with the caregivers, and I believe he definitely will benefit from connecting with other caregivers. He is extremely isolated and profoundly depressed, and I know he also needs support. One of my part time home health aides has agreed to come early and take me if there is no one else to do it, but I am very leery about doing this with her. She is not familiar with traveling with me, and does not know the route, and has never seen me in the condition I will be in at 7am when I need to get out of bed and start getting ready. My daughter has been extremely reluctant to commit to doing this, but she is the one who I wish and hope and think, should do it when my husband can’t. She’s may not be available, but I am praying she realizes that it’s important to me to meet the people in this group, and have the opportunity to connect in person with others who have this disease. It’s one day a week for 8 weeks. Is this too much to ask? The crazy thing is that I know the route to get there. It’s not about that. It’s the anxiety and overstimulation that derails me. It’s the unexpected. 42nd Street in Manhattan is madness for a person with Alzheimer’s at whatever stage I am in. Yet I want to do this.
The drawing is a self portrait with my granddaughter with a reclining Buddha that I drew from a little statue that was a gift from my son, after he went to Thailand for his honeymoon, which was four years ago. My cutest and smartest granddaughter is now two and half. No color added, made with a 4B pencil.
Maybe I had Mild Cognitive Impairment four years ago. Something must have been going on but no one noticed. I thought I was normal and would never have believed that four years later I would be who I am today.
Forty years have passed since the photo was taken of me as a 14 year old. I’m likely in the moderate stages of Alzheimer’s disease. I have no idea how this will progress but know that people with younger onset Alz do not last very long, and fast progressers progress along a faster projectory. The disease is a monster (to me). No one I have met with this diagnosis has ever described it in this way.
The isolation and loneliness I experience impels me to want to meet others with this diagnosis and experience life as much as I can while I can. When I head out the door, I need a destination. The Alzheimer’s Association seems to be the right destinatione for me now. Small accomplishments are very big things to me now. Going to the prescreening, riding on the bus I had taken for decades, but had not been on for almost two years, was a triumph. Being accepted to the group is a triumph. Will I be able to get there in one piece by 11am next week? One day at a time. One meeting at a time. One triumph at a time.
12 thoughts on “Forty years”
Wow, Minna, what a beautiful photo of you and you were a stunning teenage-very attractive and smart! Do you still have long hair? I LOVE the photo! Very interesting information Minna and so thrilled you are still in touch with one dear friend-she sounds lovely. Don’t you start to understand who there(your) “actual” friends are when someone gets a diagnosis with illnesess. E.G Cancer, Dementia. You have had many many wonderful memories with Maxine and what a beautiful part of the world to have your wedding in-Florida-paradise! Congrats on 42 years-that is amazing! If i lived close to you i would LOVE to help you but unfortunately that is not possible nonetheless i do support you from New Zealand. I love that saying “when life gives you lemons, make lemondade”, one of my favourite sayings. Wow, you have travelled a lot-i want to go to all of these places one day but in summer though! That woman sounds lovely. Yes, you are so right Minna you don’t know you have it till you have-people think it might be something easily treatable but unfortunately it isn’t. So sad to hear that your Daughter is being selflish and disclined to assiting and escorting you-very heart breaking and difficult indeed and i can relate to this well-it goes on in my family too so don’t worry. Aren’t families soooo complicated. I feel she wants to be paid to do this. Once a week for 8 weeks is NOTHING, absolutely nothing. Hopefully she can reflect on her behaviour and realise her mothers condition and be more fruitful. I always say-as long as there is life there is hope. I truly hope and pray she realises this too-fingers crossed. Lovely drawing of your grandaugher-she is so loveable and a cutie! Take Minna, best wishes from New Zealand.
Always love your kind support Sam. No my hair is no longer long. it resembles the drawing, curly and short. As for the name of the post Forty Years, my son pointed out today that the photo is 50 years old! I guess a gal likes to make herself younger, but it’s alarming to see that I didn’t subtract correctly. I was 14 and will be 64 later this month. 50 years- sheesh!!!
Your most welcome and i enjoy corresponding with you. He is right-it is 50 years old-half a decade-wow!Happy happy birthday for this month whenever that day is! Enjoy!🎈🎀💜😊👍🎉
You’re such a remarkable lady and clearly always have been ❤
This is a very tough journey, but with you by my side it makes it easier. May you enjoy all the blessings that life has to offer. You are so talented, good hearted and insightful. YOU are the remarkable lady. You are the special one. I love you.
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p.s.. My son who you know well, pointed out the photo is 50 years old! I called the post Forty Years. I guess a gal likes to make herself younger. I was 14 and will be 64 later this month. 50 years + 14= sheesh!!!
I hope you get past this, and I hope you get better… Your writing is really good which tells me your mind is still really sharp, and you’re a very intelligent woman. I believe you will be able to turn things around even with Alzheimer’s. You can still do anything, and if you feel lost, let God guide you and hold your hand. Trust that He will be there for you when all things fail.
Thanks for reading my blog, for connecting to me and commenting. I am using what I have left of my that’s the ability to write and make art, for now. It’s not just about getting lost, there are so many aspects to this that exceed getting lost, that are too exasperating and long to list in a reply.
I know so much about this damn disease, and have read more than most neurologists. Getting lost is a real concern for people who have Alzheimer’s, because there are lapses in brain processing. Rapid progression is no joke and G-d is not the lost and found, at least not on the material plane of existence- but may be in the afterlife.
Read this please about a 55 year old woman who was a senior computer programmer, who has early onset Alz
Nancy Paulikas was a brilliant woman before Alzheimer’s took that away. When she wandered off she could no longer speak. Please be informed. Alzheimer’s and other dementia are becoming a worldwide epidemic. By 2050 the estimated world population of people with Alzheimer’s and other dementia will be 131.5 million https://www.alz.co.uk/research/statistics
I may be really sharp now with my writing and ability to express what is happening to me, but Alzheimer’s is REAL and it’s important to know that. People don’t recover. You just do the best you can with the time you have left, or in some people’s cases, they check out, if you know what I mean. I’m not brave enough to do that. I always loved life, and have reverence for it, even people in late stage are living souls.
I was a smart lady. Younger onset often hits the best and brightest. I met a man who was a plastic surgeon specializing in hand surgery who has Alzheimer’s and is 64. I met a woman age 65 who was a doctor, and now does not know she lives in Manhattan, when I asked her where she lived she could only mouth the mmmmmm sound. I met a man who is in late stage who was a partner in a law firm, and now can’t walk, talk, feed himself…
Faith in G-d is a good thing of course for the spirit and essence of who we are- spiritual beings, but it won’t eradicate this physical brain disintegration and scourge that is rapidly becoming a worldwide epidemic. People without the inherited genetic mutations are getting this sporadically and some get it young. My neurologist had a patient who was 26 and gone in a year from Alzheimer’s.
There is a man named Gary Chandler who says it’s in the water
My blog is meant to inform and tell the truth. It’s raw, and honest. I hope this reply doesn’t offend you. You are so kind, innocent, and complementary. I thank you for these qualities.
Love your photo as a 14-year-old & your biography through the decades. I too was involved in the “hippie, counter-culture” world of drugs, music & marches on Washington to end the Vietnam War. Can I be of any help to you so you can attend the AD meetings on 42 Street? I live on 14 Street, as you may recall.
It is after midnight & I have much to do before retiring, so that is all I can write now.
Hope to hear from you soon.
PS Pls write to me directly to my email address. I am so overwhelmed with e-missives that I would prefer not to start getting replies to your blog, possibly from people I do not know.
Great writing. You are very gifted…Love the photo. Reminded me of a New Zealand singer in the 60’s called Dinah Lee….My wife Barbara was first diagnosed with MCI, then a year later Alzheimer’s. I will never forget that day. We walked out of the appointment absolutely stunned! Like you we had no idea of the future. And as Kate Swaffer has called it we had a time of “Prescribed Disengagement.” Thinking the absolute worse and life is now over! We were terrified. Just dumbfounded that this could happen to us. Four and a half years later we are in as good a place as can be. Yes its not good and its is slowly progressing with Barbara or I should digressing. But we are doing our best to live well with dementia….
If there is one thing that i wish friends and family would grasp is; don’t forget the ME in deMEntia.
Take Care Minna and I pray that the 8 weeks go very well for you and that God will be your comfort and strength
I always appreciate hearing from you. Thanks for the complement on my writing. I googled Dinah Lee and see what you mean- that sixties stylized look!
The neurologist also originally diagnosed me with MCI but I know it was already Alzheimer’s, as it was progressing then. MCI is when one can still do all the instrumental activities of daily living. I had already been unable to cook and shop or travel alone by the time I was diagnosed. I can still make those trusty scrambled eggs and gluten free toast, though.
At my last appointment the neurologist wanted me to have another FDG PET CT, but our insurance wouldn’t pay for it (said it’s not medically necessary) and it’s over $5000. out of pocket, so it’s not going to happen. It’s all’s well that I don’t have a radioactive isotope injected into me again which that imaging involves. The neurologist concurred that I’ve progressed. I do have an appointment for additional neuropsychological testing in June.
My cognition is still fairly stable as far as writing and communicating. It’s the physical stuff and motivation and sleep that are disturbed.
It’s so hard to know what your wife is experiencing. I’m curious- Does she have myoclonus (muscle twitching)? Is her walking (gait) changing and is walking ever hard for her? Is she able to do tasks like making the bed and any cooking or food preparation? I assume she can because you said that you travel alone away from her sometimes. Is there any physical weakening? Does she have any problems swallowing? Does she have any trouble dressing and showering herself? How is her sleep? (Sorry if these questions are too personally intrusive. I am not always clear on what etiquette to use so just come out with it. Lost my filter!)
When you say digressing what do you mean? Is Barbara able to speak with you and carry on a conversation? Have you considered providing her with the Dementia Alliance International Zoom chat support group link and helping her to log on? Kate Swaffer can provide details if that’s a possibility for Barbara and she is able to speak.
As for the ME in deMEntia, my husband would say that is all I do- talk about myself LOL!
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Hi Minna, no problem re the questions and filter
Barbara is doing well and still cooks, although I do assist more now, she does the housework, still driving and no trouble dressing and walking. I have noticed that she is not as active as she used to be and she is not as motivated as she was. We converse still, have alot of laughs and fun. I think she is one of the slow ones as far as progression is concerned.
When I say digressing its a term re her condition. To say progressing is like she is getting better, but the opposite is happening. Its just my bad use of English I think
I do feel for your husband. I hope he gets help. I was depressed last year and went to the doctor and got some “happy” pills which has made a huge change. I started to enjoy life alot more.
Keep Lookin Up