The Daze – The Days

Suddenly Mad- The Daze (sky)Things are a daze of forgetfulness unless I look back at my iPhone calendar. Then I remember the events and emotions connected to the previous days. The people I saw, places I went, and the days that I didn’t go anywhere, and how that made me feel. The triumphs of being able to simply go somewhere outside of my home, be dressed neatly  and be able to participate instead of just sitting on my couch (a term my friend Margery who also has Alz calls couch lock). The small pleasures of being able to be a part of life. To be present.

I know the last post was June 29. Over two weeks ago. There seems to be a lot of progression in a matter of weeks. More confusion and forgetfulness. The crazy systems I’ve devised to keep functioning are just that – crazy. Nothing about this makes any sense to me, all I know is that I have Alzheimer’s and I keep pushing myself through each day. My brain feels at turns delirious and then slows down so that I can’t think at all. My body is weaker. Walking is getting harder. I am not able to remember things in any kind of order, everything is becoming a kind of blur. The iPhone calendar has been and remains a handy reference for remembering as well as a tool for planning. It tells me the date and time, and lets me set alarms so I can be ready to show up for things. I function because of the support I get, mainly from my husband. Meals are prepared for me, and I eat. I am told it’s time to go and I push myself to stand up and walk. I’m aware all the time of having this disease and how my focus and physicality is altered. I’m conscious that I’m walking through life in a daze, and it’s very hard to be purposeful when my brain is telling me not to be.

Creativity has been challenging. I have found myself sitting in front of the blank page in my sketchbook and not been able to begin drawing, and walk away. I did do a drawing of my husband last week. Before I could keep going and going with a drawing until it developed into something I was satisfied with. Something that surprised me and looked beautiful to me. This time I was only able to stick with it for a short time. He is much handsomer than this. Wish I could capture that. I look at the photographs I take of him and see how this has taken a toll on him. Sadness in his eyes, weariness, and pain in his body. This is an impossible situation. We were planning to continue working for several more years and then retire and enjoy our “golden years”. This disease has robbed us both of that.

Suddenly Mad- Drawing of WayneMy husband tries to find solutions. I have a yoga teacher that he hired. I used to do yoga and attended classes and practiced it alone in the earlier stages of this disease. Now I can’t seem to do it without instruction. Krishna, my teacher, does yoga with a man who lives a few miles away, who is in his seventies and has Alzheimer’s. My husband had put an add on Craig’s List for a home health aide/ companion and Krishna responded suggesting he consider hiring him to teach me yoga. I was very strong before this disease stole my strength, cognition and initiative. I was weight training with a trainer and doing yoga classes once a week. The body remembers and I am able to do many of the asanas, but I need instruction because I have trouble getting started. Once I’m on the mat I can do it.  Here are pictures of Krishna assuming yoga poses. He says I am strong, because I can do the poses. I can balance on one leg and hold a tree pose. Unlike his other client who has Alzheimer’s, I do know my right from left, no confusion about that, and can do the balance and Warrior 1,2 and 3 poses, and many of the postures he demonstrates. Doing them alone though and having the discipline to get started alone is another story.

Suddenly Mad- Krishna balance poseSuddenly Mad- Krishna yoga headstand

Before Alzheimer’s changed everything, Sundays used to be a day I would be with my husband before both of us readied ourselves for the work week ahead. Now that I’m home so much, Sundays are a day he needs to rest, and I don’t know what to do with myself. I can go out for a walk, but without a destination it doesn’t make sense to me to go walking aimlessly. Beyond a certain distance I become disoriented. I can go to the park which is 2 blocks from my house. I do that a lot. My husband was taking me for walks frequently, but since his back has been bad, that has decreased. So I end up sitting at home playing cognitive games on my iPhone over and over. I get bored and sad. People with Alzheimer’s crave company and companionship. My husband tends to withdraw from me and that makes me sad. I know how boring and withdrawn I have become and he doesn’t really know how to relate to this person who is inhabiting the body of the person who he knew as his wife.

To conquer boredom I always say yes to going on a trip anywhere. My friends Jeanne and Bob offered to take me to Tinton Falls, where they go to see their osteopath (I asked to see him) and have lunch at a restaurant called Mumford’s. I was nervous and anxious about going with them. It takes me so long to get ready in the morning, and that Monday, July 2, I would have to be up by 7am to be ready by 9:15. I usually can’t fall asleep until after 2 am and need hours to get ready. But I was ready on time. Jeanne later told me my expression when I stepped out the door was a look of sheer panic. Once we were driving I relaxed, and saw that we were heading in the direction of Newark airport.

Driving to Tinton Falls took us through roads with trees and greenery. I’ve always lived in an urban setting although my city is quaint and dotted with trees, it is definitely a city. It felt good getting away from the buildings and cement.

We used to go to the beach in the summer, and would drive to upstate New York to go hiking and camping. Summer’s were times for enjoying the outdoors. Memories of years we would drive down to the New Jersey shore come back to me now. The brisk air and open sky crossing the bridge that connects the little islands off the main shore. Towns with beaches and big Victorian houses near the beach. The ferris wheel and the amusement parks we’d go to with my kids. We rented a little house down the shore a few blocks from the beach. My husband bought two crabs for my daughter. Those crabs lived for years in a cage in our bedroom. Memories of hiking on the Appalachian trail, with backpacks filled with food, sleeping bags attached and sleeping in a tent. Renting a house near Woodstock, New York. Our son, just a baby then. The vast lawn in front of the house. Fireflies at night. Dinners with the group of friends we rented the house with. Parties and beer, sitting on the patio in rocking chairs. The years, the summers, a blur, punctuated by sporadic memories, images.

I’d imagined it would take longer getting to Tinton Falls. Bob parked the car and we were there at the osteopath’s building, poof- and we were too early. The doctor wasn’t there yet and the office was locked, so we three went out to sit in the garden.

It was hot, very hot, and Jeanne couldn’t stay outside. I sat with Bob at a table and we talked about Alexandria Ocasio-Cortez who had just won a Congressional seat in New York’s 14th district, defeating the incumbent, Joe Crowley. This was safe talk knowing Bob is a long time Democrat (as am I) and retired lawyer. He is a wonderful guy who has told me about his life story. Born into a family of lawyers and judges, the law was the family business.

Suddenly Mad- The Daze (Darwin sculpture at osteopaths office)The doctor arrived and I walked around the waiting room, while Jeanne went into her appointment and Bob read a book. I spotted this sculpture and snapped a photo. It’s a bronze cast of an ape holding a human scull, sitting on a stack of books. The name DARWIN is inscribed on one of the books. This got me thinking about Darwin and his theories about evolution.

Summary of Darwin’s Theory of Evolution

A species is a population of organisms that interbreeds and has fertile offspring.

Living organisms have descended with modifications from species that lived before them.

Natural selection explains how this evolution has happened:

More organisms are produced than can survive because of limited resources.

Organisms struggle for the necessities of life; there is competition for resources.

Individuals within a population vary in their traits; some of these traits are heritable — passed on to offspring.

Some variants are better adapted to survive and reproduce under local conditions than others.

Better-adapted individuals (the “fit enough”) are more likely to survive and reproduce, thereby passing on copies of their genes to the next generation.

Species whose individuals are best adapted survive; others become extinct.

Clearly I was fit enough to reproduce and survive to nurture my children and family. My son is now 35 and is the father of a little girl who is almost 3 and his wife is pregnant with twins. My daughter is 27, and is not yet married and has no children…yet. I hope she does get married and has a family someday. I think it will provide an anchor for her. I know that my becoming sick with Alzheimer’s has been devastating for her. I want her to have happiness and fulfillment.

I am remembering a woman I knew when I owned an art gallery in the late 1980’s. Her name was Angela and she was in her late twenties and worked for Prudential’s art program. She would come to my gallery and bought artworks for their collection. Angela was pregnant and I was later informed that she died after giving birth to her baby. A tragedy. Women still die in childbirth. Angela seemed so strong and healthy. I was shocked.

I was a survivor and adapted to so many new circumstances until I could no longer adapt. Alzheimer’s even in the earlier stages makes it hard to adapt. It’s a disease that is the antithesis of adaptation.

I wondered if there was any relationship between Darwin and Alzheimer’s and found this- The idea that neurodegenerative dementia may have something to do with evolution is not new. More than 20 years ago, Stanley Rapoport of the National Institutes of Health suggested that Alzheimer’s disease is a human phylogenetic disease, and that diseases such as AD and Down syndrome involve pathological changes in the specific genes, whatever they may be, responsible for the rapid evolution of the human brain (Med. Hypoth. 1989 29:147).

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My turn to go into the osteopath’s office, and I told him my story of being overwhelmed by Alzheimer’s, my diagnosis and now finding myself progressing rapidly in the disease. He had me lay down on his osteopathic bed and put his hands under my back and spine and under my head. He suggested I have my dental implants removed. I told him this was out of the question. He said my nervous system is overwhelmed. I asked him if he’d ever met anyone who had this disease. He said yes, a friend of his parents, and that this friend was traveling with his parents in Florida. I knew that this wasn’t likely someone who really has Alzheimer’s disease, at least not insofar as I understand and experience the disease. Maybe the person has mild cognitive impairment, but when it’s Alzheimer’s and there is real progression, regular vacations and life as it was are no longer possible. I wasn’t looking for any magic bullet in visiting this doctor. I know there is no cure. I went because I was curious and wanted to take this trip with Jeanne and Bob.  I was curious about what the doctor would say when he examined me. He wrote a note with directions for a breathing exercise- 1:2 ratio – inhalation – exhalation. Start with 2 seconds in, 4 seconds out, then 3 in and 6 out. Oh, if it were only that easy.  It was once. It used to be easy to do things like yoga breathing to calm my nervous system. I used to do alternate nostril breathing all the time. I knew how to rebalance myself before I got this disease.

Suddenly Mad- The Daze Osteopath Dr. Rubin_s office)

Next stop was our lunch at Mumford’s, a restaurant that Jeanne raves about. We drove down the road and got out and walked past a welcoming hellstrip  of day lilies. I followed Jeanne and Bob and we arrived at Mumford’s, a rustic old style restaurant. Inside the restaurant was crowded and the waitress tried to seat us at bar height tables, which would not have worked for me. I went on a hunt for a regular table with chairs and found one and asked if we could sit there. It was a little further away from the other tables behind a long display case filled with cakes, cookies and muffins. I rarely eat in restaurants now. At home I sit and eat at the long kitchen island, and I wear an adult bib my husband bought for me. I know now that eating in public is not easy for me. Neither is choosing something from the menu. Eating meals in general is rather complex now. Figuring out which utensils to use, cutting food, chewing, swallowing. Each step in the process requires concentration. I’ve seen how I’ve tried to cut food with the dull side of a knife. I remember panicking when I was confused about how to eat a half baked squash with a spoon and switch to eating vegetables and chicken which were on the same plate with a knife and fork. The salad I ordered had things in it I could cut with a knife and I put small pieces in my mouth and chewed, swallowed and sipped water to avoid choking. Using utensils at the table that were different from the ones at home took a few seconds of getting used to. A simple pleasure like going to a restaurant with friends for lunch and the act of eating is not something anyone thinks about. For me every step of everything I do requires thinking and processing. This I suppose is why I go so slowly and deliberately with every action I take.

Suddenly Mad- Walking to Mumford_sSuddenly Mad- The Daze (Mumford_s)Suddenly Mad- The Daze ( inside Mumford_s)

My husband hired another home health aide, Luiza, who is Armenian. She came the following day, Tuesday. My husband had a vacation day and was home too. I had met her the previous week, and understood she knows nothing about Alzheimer’s. My husband instructed her to clean our house, and showed her where the supplies are. When Krishna, the yoga teacher arrived, she watched us do yoga. I was used to Krishna coming and knew to retrieve the visitor parking permit when he left. I was standing at the front door and turned around and Luiza had followed me out. I was alarmed that she was hovering over me. I’m not a wanderer and don’t need to be hovered over. I got upset. After he left, Luiza asked me to play Scrabble with her (she calls it Swabble). I played with her and saw that she doesn’t know many English words. Frustration.

That same day my friend Ruth returned. She’d been gone for two weeks. When she left there was no way of knowing when she’d return. I thought she would move back to Atlanta. I was forlorn and having a hard time being alone so much. Then my husband hired a home health aide/companion, and Ruth was back. Before she left to visit her daughter in Atlanta (her daughter who she had been estranged from and was in bad shape called her and asked her to come), I had been spending nearly everyday with Ruth since we met several months ago. She’d come here and I would walk the half mile to her apartment. I didn’t want Luiza here, now that Ruth was back. My husband had been leaving me meals, and Ruth would remind me to eat. We would go for walks. We would talk. I know that Ruth is not a home health aide. She’s a friend. What I wanted was to be with a friend. Ruth understands the gravity of this disease and has seen me change in the 3 months she’s known me.

Luiza is hired to visit me and clean and cook. So far she is adept at cleaning and helps both Wayne and I by doing that. But when it comes to cooking, Wayne left her a list to make some chicken and told her not to fry it. I saw that she had cut it into strips and was frying it, and told me that some oil is good for me. She made rice with some weird stuff mixed in that was not discernible and it was terrible and I couldn’t eat it and had to throw most of it in the toilet and flush it. So what to do? She can’t cook and I can’t eat what she makes. It’s a problem. She doesn’t have any ideas about what to do with me. I emailed her The Alzheimer’s Resources Directory of New York http://www.adrcnyc.org/print-directory.pdf, in the hopes that maybe she would read it and arrange some things for us to do together. She drives and has a car. Wishful thinking.

I know that this disease is taking me down. Just getting dressed and going anywhere alone is problematic. Sure I can get to Ruth’s. It’s a good thing that I have a friend I can visit. But the reality is that my body is getting weaker and I sit a lot and the confusion and hodgepodge of symptoms is progressing. I can’t expect Luiza to be my savior, suddenly swoop in and motivate me and make sure I eat well when she can’t even cook. The disease is taking me down and there is nothing that anyone can do about it. Luiza sees me dressed. She doesn’t understand that I have to put my clothes on a hanger every night and bring it downstairs along with my shoes to dress the next day. I would feel so embarrassed if she had to dress me. I push and push to appear normal and dressed by the time she arrives, but I am not. I have lost many of my instrumental activities of daily living

  • Managing money (i.e., writing checks, handling cash, keeping a budget) (can write a check and handle small amounts of cash, but can’t keep a budget and generally can’t manage money)
  • Managing medications(i.e., taking the appropriate dose of medication at the right time) (so far I can manage my medications by checking off on my list after I’ve taken them).
  • Cooking (i.e., preparing meals or snacks, microwave/stove usage) (I can’t prepare meals, save for still being able to make scrambled eggs and toast. I can us the microwave but not the oven)
  • Housekeeping (i.e., performing light and heavy chores such as dusting or mowing the lawn) (ability to do housework is gone, save for being able to do a few dishes at a time)
  • Using appliances (i.e., using the telephone, television, or vacuum appropriately) (I can use my mobile phone, and can still work the remote control on my television. Vacuuming skill and use of the Dyson vacuum cleaner is confusing). 
  • Shopping (i.e., purchasing, discerning between items) (Not able to go shopping alone. Can discern between items). 
  • Extracurriculars (i.e., maintaining a hobby or some leisure activities) (I can still draw, and do yoga postures under direction)

So here are some things that I see I can still do-

I am still able to visit my son and his wife and Sat July 7 was my daughter-in-law’s birthday. Her mom and step father threw her a party and I handled it well. I was sociable and eating was no problem. I was nervous about going, but it went okay. People who don’t know me well would never have guessed I have Alzheimer’s or any impairments.

I am still able to go to my therapists office which is blocks from my house. I am still able to walk to Ruth’s.

I am still able to take the bus to New York with my husband, but walking through crowds to go to to the Alzheimer’s Association building requires a lot of support. My husband had to literally hold my arm and direct me and cross the street with me. I felt weak and walking that distance was hard.

I am still able to eat by myself. Use of utensils is intact. I am still able to dress and shower myself.

How long I will be able to do these things and keep pushing I do not know.

I write a list of the things I want to accomplish the next day. Most days little of it get done. Today my husband ordered some new clothes, shoes and bras for me online. I was able to direct the purchases. I miss the days when I could take care of myself. I miss me. The me that I was.

Tomorrow is the exhibit of photographs that I made along with the other members of the support group at The Alzheimer’s Association. I convinced my husband to take me. It’s in New York and a few blocks from the building where where the Alzheimer’s Association is located. I’ve invited Ruth to join us. I have to get to bed now. Before I go to bed i have to write my list and set up my clothes for tomorrow. Such simple things are daunting. I wish they weren’t.

 

 

 

 

Love at The Bitter End

Suddenly Mad- Love at the Bitter End - drawing of Mimi in the garden

Writing is a way of putting things in some kind of order. It’s the attempt to be seated in my soul and watch this thing, Alzheimer’s, unfold.

Thirteen days ago was Father’s Day. June 17, 2018. It was a beautiful sunny day. I photograph with my iPhone and took a snapshot of my daughter. The drawing was made by looking at that photograph. It doesn’t do her lithe beauty justice, but I tried to capture her likeness. She looks like her papa. Oblong face and and graceful long limbs.

Father’s Day. It was an emotional day. First my son arrived alone, without his wife and baby daughter. I felt so much love for him in that moment, as soon as I saw him and hugged him. On this day I was glad to have a few brief moments alone with him. When my daughter arrived, she presented a gift to her dad. Japanese pajamas from Muji. A navy blue ensemble with a top that ties around the waist, and pants that grace the top of the calf. He went upstairs and put them on his tall and lanky frame. The fit was perfect. As the kids and I sat in the backyard garden, he watered the flowers and plants. Then my daughter and husband went out for a walk, leaving me alone with my son. We sat inside at our large glass dining table and looked at photographs I have kept in a box for a long time. Photographs I had intended to put into albums and never got around to doing. Photographs of him as a baby, his childhood, my daughter’s childhood, birthday parties and cakes with candles, the years my son gave piano recitals – Rachmaninoff, Beethoven, the Chopin Etudes. Photos of the relatives. Happy times together. Victories. Our little glories.

Many of the people in the photos who were so important to us are gone now; my mother-in-law Edith, who died two years ago at age 94 with late onset Alzheimer’s. She was the glue who held the family together. There were photos of her younger brother the beloved uncle Jerome,  who was a brilliant historian, his mind sharp but his body unable to withstand the ravages of illness after illness. Pictures of Milton, my husband’s father who was always so kind to me. He always wanted to be a writer and finally had time to write when he retired. But retirement was brief. He died at age 70 of a massive heart attack, after walking up a hill to fetch a copy of The New York Times. The photos of my sister and her children reminded me of when things were were still congenial between us, and our parents were alive. Photos of my parents from our visits with them in Miami Beach. Photos of them in Hallandale, Florida. Life had promise and endurance.

How could a disease like this happen which abruptly changed everything? How long was this brewing in my brain? I call this time period I am living in now – love at the bitter end. I know that my memory and functionality is being erased by an insidious disease and I am holding on as tightly as I can by writing and remembering.

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The days that followed included an experience at Ruth’s apartment that was frightening. Last Monday soon after I got there, I had to lay down on her bed, and had so much trouble standing and walking, that she attempted to wheel me on the seat of her walker when it was time to go. I called my husband to come and fetch me and take me home, but I couldn’t get up. I couldn’t stand. He had trouble believing me and began to lose his patience. He said he was going to set the alarm on his phone and give me three minutes. I started to panic and cry.  I felt like I was unable to walk. For a few minutes I couldn’t get my body to respond to my own command to get up and walk, though I was telling myself to. When I finally was able to stand, I stumbled down the hall to the elevator where my husband was waiting in the lobby. It was pouring rain outside. He told me it was going to stop, and we could wait it out in the lobby. It did stop raining, and although walking was harder than it had been going there, I was able to walk home holding onto his arm. Prelude to this – my neurologist wanted me to double the cognitive medication Rivastigmine, and I took 2 capsules that day instead of the one I had been taking. The next day my husband called him and told his staff what had happened after I increased the dose. The call back from his nurse practitioner was that if this is how I reacted to the increased dose, I should go back to one capsule. I’ve been taking this medication for a year and a half. I doubt it’s slowed my progression. If anything it seems to have speeded it up. Who knows? I do know there are a host of side effects including Bradicardia (slowed heart beat) and nausea. I’ve noticed that I’ve developed reflux since starting it, and never had that before. It took days to recover and feel somewhat normal in my gait and ability to walk.

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suddenly-mad-triumph-or-alzheimer_s-or-alzheimer_s-close-up-of-ruthie-e1530137434489.jpg

Ruth my friend and confidant has left for Atlanta. Abruptly. She called me on the phone on Monday morning and told me her 48 year old daughter called her and told her she hasn’t been in bed for 3 and 1/2 months. She’s been estranged from her daughter for years. Ruth thinks it’s depression and PTSD, and she bought a plane ticket and left. Gone in a flash. I came to depend on Ruth very quickly as she offered companionship instantly after we met. I would go to her apartment across town, and we would spend time together, almost every day. She saw me have good days and many bad days.

Her presence helped assure me that I would still get around, visit her and we would do things together. Left to my own devices I sit so damned much. There is such a sense of gravity pulling me down (makes me think of the phrase, a body in motion remains in motions, a body at rest remains in rest). Her presence gave me the impetus to push myself. We would go to the bank together where I deposited small checks, and saw that I had not forgotten how to use the ATM, and still knew my pin number. We walked to her veterinarian to pick up medicine for her cat, Gigi, and it helped me orient myself with landmarks I have known for over forty years in this small city. I was devastated when she told me she was leaving. Such is dependence in Alzheimer’s. One gets needy. This is childlike regression in a body and brain that is losing it’s motherboard.

She helped to keep me going. Now she’s gone, and I have no idea when she will return and what I’ll be like when she does get back. It could be months. I now have to find new ways to fill my days. I was so productive before this horrible disease overtook me. I wasn’t always happy but I was okay. Now I am not okay.

My daughter who I love will not have me around when she’s 48. I envy Ruth in having this closure with a daughter who has been estranged from her for many years. She got to heal the dysfunctional relationship by showing up for her daughter in her time of need.

I wish my daughter would take some time to be with me now, even though I can’t be the mom she knew who could take care of her. I love her, and wish she would understand the nature of time passing, and how ephemeral things are. I may not be able to speak or walk or talk later, if I’m still around. It’s already getting very hard to do those things. I reach for her now. I know I try too hard to hold on. It’s very painful for her to be with me now. It pains me to know that.

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Suddenly Mad- Love at the Bitter End La Lanterna di Vitoria Cafe menu

Jackie is a very dear friend who I wish lived in this city!  She is the chair of Dementia Action Alliance and she and her husband live about an hour away in New Jersey. Jackie frequently Zoom chats with me, and consoles me when there was no one else around and I have been full of worry and regret. She and her husband Lon took me to New York on Monday to attend a panel discussion held at New York University called Being Human.

The photograph is from the menu of the restaurant we went to in Greenwich Village. We ordered pizza and eating was no problem, though I thought it would be problematic. At home when I eat, I forget how much I am putting in my mouth, and swallowing has become a problem. Yet eating a few slices of pizza was easy. (That’s part of Alzheimer’s, eating and swallowing. It’s something I always did easily of course. But now this too is frequently hard and takes concentration to do. I literally have to focus on being able to swallow. It’s called dysphagia https://www.agingcare.com/articles/dysphagia-how-to-help-a-loved-one-eat-and-drink-safely-187010.htm and usually happens in late stage. Stages be damned. I’m not in late stage and it’s happening to me now. I don’t think I would be able to write about this if I was in late stage Alzheimer’s, but who knows, this is such a weird disease.

From the restaurant we walked to the NYU School of Law, but still had time to walk around before the program began, and I wanted to get my bearings. We headed up Washington Square West where I saw a powerfully built looking man doing pull ups on a horizontal pole. I looked in the distance and thought I saw 8th Street. Jackie confirmed that that’s what the street sign said. We walked towards it and it’s then that I understood where I was. I had for so many years walked on 8th Street, shopped there for shoes (it used to be littered with shoe stores). I wanted to show Jackie and Lon how Washington Square connected to 6th Ave. and that’s where I would take the PATH train to home. What I understood at that moment was that my conception of the streets and mapping out my location was fragmented. I can find my way when I am extremely familiar with routes I have taken in the past. New locations are now daunting and my fear of getting lost now is what is keeping me from venturing out alone (that and usually having no where to go along with wobbly legs, the fear of falling, and an aversion to crowds and to loud sounds).

Standing on 6th Ave across the street from the PATH train I’d taken hundreds of times, was bittersweet. I was glad to have found my way there to show Jackie, but I hadn’t been there in over two years. It is during these two years I have progressed in this disease. I stared at Citarella on the corner. This is where I shopped when I was in this neighborhood. I used to buy herring, vegetables, fish, cheese, bread and olives there. I used to have a great appetite. As I stood across the street from Citarella and the PATH entrance on 9th street, it felt like I was the ghost of my former self. We headed back down 6th Ave. and then onto 8th Street and turned back onto Washington Square West where we passed a the same very muscular strong bodied man with no shirt on, doing pull ups on a pole.

Suddenly Mad- Love at the Bitter End - NYU Law Building across from Washington Square Park

In the  lecture hall, in the law building at NYU, the panelists were seated and introduced themselves after Mary Fridley, the moderator spoke. She is pro-bono director of The East Side Institute http://eastsideinstitute.org/

Suddenly Mad- Love at the Bitter End - Being Human panel discussion with Mary Fridley, Mary Radowsky, Susan Massad and an art therapist and recreation therapist

The talk aimed to change the “tragedy narrative” that distorts how people living along the dementia spectrum are seen. I know one of the presenters/ panel participants from participating in bi-weekly Zoom chats on Dementia Mentors. She is Mary Radnofsky, a former college professor president of the Socrates Institute. Mary is the first person with dementia to advocate at the UN for the human rights of people living with dementia. Her dementia is caused by subcortical leukoencephalopathy, also known as Binswager’s disease. It’s a form of small vessel vascular dementia caused by damage to the white brain matter. She does not have Alzheimer’s. She travels with Benji, her service dog, who is her constant companion.

Suddenly Mad- Love at the Bitter End - Mary Radnofsky and Benji

The other panelists included Susan Massad, who is a retired primary care physician with 51 years of practice experience. She launched New Timers, a senior theater workshop, and is an East Side Institute faculty member. She has a sister who lives in California who has Alzheimer’s. The youngest panelists, were Nettie Harper who is a recreation therapist, and Katherine Houpt who is an art therapist working in Chicago.

A woman in the audience named June, who I later introduced myself to, told the story of her sister who had younger onset Alzheimer’s. Her sister was in her late fifties when it started and she lived until her early seventies. I sent her my blog, and she wrote me that I’m a fine writer, and that what I am going through sounds very hard and painful and lonely. She wrote that she hopes I can build with Susan Massad and Mary Fridley and others who are trying to change the tragedy narrative of dementia. She wrote that maybe I can do that with them.  She said maybe this will help me.

The discussion centered around the effort to be inclusive and understand that people, even those in later stages of dementia are human, have feelings and are capable of creativity and self expression. Being treated with dignity and respect should always be the goal, and as evidence of this Nettie Harper recalled an Alzheimer’s patient at a facility who the aides complained about as a person who bites and hits and can’t speak. Nettie said she approached the woman and extended her hand. The woman spoke with her and was pleasant and communicative. There was a huge disconnect for Nettie with the way this woman was described to her and what her experience of meeting her was. Having been told that the woman was a biter and hitter, she wondered what actions the aides took with her to elicit this response. Surely the way they related to her, probably  forcibly trying to get her do things like bathe when they wanted her to, must have irked her. Nettie saw that her approach to this woman evoked a positive response, and wondered if the brusque treatment is what characterized her as hostile.

People are not trained to be understanding and patient when dealing with dementia patients. What goes on behind the closed doors of Alzheimer’s units is disgraceful because the aides are overwhelmed in caring for dozens of patients and approach their jobs as assembly lines in which people have to be bathed and changed and fed. These workers, paid on the low end of the scale, are already disgruntled. Given a patient who needs more time and needs to be approached with tender loving care does not typically fit into the time frame of harried underpaid nurses aides.

The problem is a system that warehouses people with dementia, is owned by corporations with underpaid staff who don’t care and expect the patient to be compliant. When they’re not compliant, they are deemed difficult and often medicated to control their behavior. Dignity is not routinely offered to dementia patients. For this people pay upwards of $10,000. a month and much more. I’ve read about patients walking around with feces on their clothes and all over their rooms on www.alzconnected.org in the spouse forum.

Changing the tragedy narrative must include changing the attitude of caregivers who warehouse their loved ones when their care becomes overwhelming. Anything less is putting a Pollyanna face on these horrible terminal diseases and what is needed to create an attitude of respect and dignity.

Changing the tragedy narrative involves so much more than art therapy and recreational therapy. This just tries to sugarcoat the situation and close the closet door on a monster who won’t stay in the closet. I’m all for recreation and creative programs for people with Alzheimer’s and dementia. However, institutionalized care of people who have Alzheimer’s and dementia is routinely hideous in most facilities. Yes, let’s accept the fact that people with dementia are human. That would be a start.

As for people in the earlier to moderate stages like me, who are intent on never going to a nursing home, know that every day we have to outmaneuver this insidious demon, until it overtakes us. Give us the dignity and respect and provide us with kind and considerate care. Don’t warehouse us with untrained workers who are overwhelmed with caring for dozens of dementia patients. Find another way.

____________________________________________________________________________________________

Suddenly Mad- Love at The Bitter End (The Bitter End Cafe)

We passed The Bitter End Cafe on Bleeker Street, on our way to West 3rd Street to get Lon and Jackie’s car for the ride back to New Jersey. It began as a folk music venue in 1961, and became famous for hosting performers like Joan Baez, Joni Mitchell, John Denver, Bob Dylan, Judy Collins, Odetta, Neil Young, Pete Seeger, Peter, Paul and Mary,  and Phil Ochs, and comedians like Woody Allen. During its heyday the Bitter End showcased a wide range of talented and legendary musicians, comedians, and theatrical performers. The name of the cafe says it all. The Bitter End – to the limit of one’s efforts – to the last extremity.

I’ve gone the distance and exceeded the threshold it seems. I’m not that old and yet I am at the bitter end. Next stop – Heaven’s Gate.

 

 

The Moral of the Story

 

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The slides are some of my drawings from the past year. They chronicle a personal visual history of my progression in Alzheimer’s since last summer. A year has passed and I am now retired, having resigned from my position as the chair and head teacher of the art and art history department of the private school where I taught for twenty years. I had also been an adjunct professor at New York University. I was working on an amazing  film project begun as a Fulbright to Poland. My editor had cut a great film from the 35mm footage my crew shot in Poland from my original story inspired by a true story about a dwarf who was my late father’s friend, and survived the Holocaust by hiding in garbage cans. I had completed a great script. I believed I would get this movie made https://vimeo.com/91234297

My life stopped with this disease. I lost my friends. Lost my long time therapist who I had seen for nine years. I lost the respect of my husband, my children. I could no longer be the woman I was. The capable professional, adoring and stylish mother who laughed and gave endlessly of herself was no longer that person. I stopped being able to go food shopping and cook, couldn’t prepare meals, began to have trouble dressing myself. My personality changed. It all happened so fast. I lost my identity! I still had the same name and address and telephone number, but I became someone else. An alien to myself. I felt like a monster had invaded my body. I thought an alien had abducted my brain. I receive Social Security compassionate care allowance now for early onset Alzheimer’s and seek activities and friends who will not shun a person with this dreadful disease.

*****

 

On Friday I went by myself to The Rubin Museum’s Mindfulness Connection’s program for people with dementia. It’s on the third Friday of every month. This was the second time I’d been to the city by myself in almost two years and was the second time I went to Rubin alone. I’ve been attending since October 2017. Ten months. First my daughter took me, then Jill, the young woman who worked as my companion for several months. She quit. Then Keith who I hired as my companion, took me four times, from January through April of this year, 2018. Then Keith quit. I was not going to let that stop me. My husband works on Fridays. He can’t drop everything and take me. I know the route, and in May pushed myself to go alone, though I had a great deal of anxiety about it. The first time there was a sense of triumph. On Friday, I did it again. Though the disease is fast progressing in me (physical symptoms as well as cognitive with agitation/anxiety and depression), and there has been sleep breakage for over two years (I have not had over four hours of continuous sleep in that amount of time), and I am slow and confused about so many things, I’m a fighter, and this is how I am fighting the disease. By not allowing my impairments to rule me constantly and yet they do. It’s paradoxical. It’s hellish. The disease wants me to stop pushing. I can only fight by pushing back. There is a heaviness, a sense of gravity pulling me down. My agility is gone. I feel like I lumber when I walk, and am wobbly. Nevertheless I push.

Suddenly Mad- The Moral of the Story - on the PATH train going myself to Rubin (photographing my reflection)

Here I am on the PATH train, my image reflected in the glass on the door on route to the 14th Street station. I know the route and it’s not a matter of not knowing where to go. It’s the journey that is daunting. I am anxious about being outside. Rudderless. I am slow and everyone passes me. I let them pass, knowing I need more time. I’m not sure whether to stand up when the train reaches the stop, or wait until the doors open and make a fast dash to the door. Indecisive. The slanted step I am not expecting, as I climb the two flights up after arriving, is dealt with. I notice the construction going on at the opposite side of the street, and have to cross the traffic intersection the other way. No big deal, but for a person with Alzheimer’s, any change in what is expected can present an obstacle.

Lin was there when I arrived. She tells me her husband passed away last month and he had Alzheimer’s. She is grieving, but is extremely dignified, composes herself before she becomes tearful as she tells me about him. A pretty, energetic woman, with short cropped white hair, she is volunteering and her compassionate presence is welcome. I showed her my new Medic Alert bracelet, as she had expressed concern last month when I arrived alone and I didn’t have one. It is engraved with the words – Alzheimer’s, Memory Impaired, Allergic to Penicillin, and numbers identifying me to a national service if I get lost.

Across from Lin sat Amelia and her aide, Ray. Amelia looks much younger than her age (75, Ray tells me). She is wearing a hat, a paisley blue and white blouse, hoop earrings, a beaded necklace, a pair of new burgundy New Balance sneakers.  Ray tells me Amelia  was a ballerina and that she had four miscarriages, and has no children, but is married. I introduce myself to her. I immediately find out there is not much Amelia can do. She speaks a few words, but Ray tells me that she is incontinent and under her stretch jeans, I notice the bulge of her diaper. Ray tells me she can’t feed her self. Obviously she doesn’t dress herself either. I may be a little unkempt, but I dress myself, and though it is getting harder, I manage to groom myself and put on some makeup. Amelia says something to me, but I don’t understand what the words are. Ray tells me she said she likes me.

I smile and get up and make my way over to Michael, who has arrived with his aide Georgia, and is seated in his wheelchair, dressed in a spiffy navy polo shirt, jeans and a white baseball cap. I make eye contact when I say say hello, and tell him how much I wish we could have a conversation. He is alert, receptive and tries to speak, but no audible words come out. With Michael, I sense the intelligence, or something about his former personality, a vibrancy, behind all the impairment. He is clearly in late stage dementia, but there is so much desire in him to try and communicate. I’ve seen him when he was depressed and much more withdrawn. That was when his aide, Jaime left, and was replaced by Georgia. Yesterday he looked brighter, more aware than before. Somewhat able to be reached by my words and communication. Michael was a lawyer, and I know he’s a well off man who is financially  prepared for affording his care. His children hired Georgia, who is an excellent aide. He lives in a beautiful part of Manhattan. She takes him to a program through NYU where they work with him, providing cognitive remediation, and I can see Michael is trying. That is the will to live. I see it in Michael. I see the effort he makes to communicate. I see the pride in Georgia that he is learning to say a few words.

Alzheimer’s and what it does to a person is cruel, beyond cruel. Here I am in a much earlier stage of this horrible disease and seeing Michael and Amelia, I know this is not the future I want for myself. Yet the only option has been to to go on each day, or end this while I still can. If I wait too long, I will not have the option. I am hoping something else takes me before I become hopelessly unable to make a choice. Of course we all die. But there is a reason this is the most dreaded disease of all. It’s a relentless monster that takes and takes and takes away everything from a person that makes them who they are. Words, thoughts, personality, mobility, the ability to eat, chew, swallow, piece by piece, the essence of what makes a person who they are is destroyed. I describe it here, and I think I do it very well. I think it’s important to be honest about the ravages of this disease. When it’s really Alzheimer’s it only gets worse. Because I am so aware of details, I use this forum to elucidate exactly what I see. Meeting Amelia was more difficult for me, even harder than seeing Michael in his wheelchair. When it was time to go upstairs to view and discuss the artworks, Amelia needed help coming to a standing position, needed help to get out of the chair and walk (which she can do). It took both Ray and Lin to get her to stand up and turn. Once she was standing up she was able to walk to the elevator and be directed to get on.

Another man, Steve, tall and sturdy with grey hair, wearing a turquoise polo, khaki pants and sneakers (I photograph with my iPhone to remember what I see. It’s because of these  photographs that I can describe these details). Steve got on the elevator to join our group. He was accompanied by his aide. He was conversant and clearly in an earlier stage than Amelia. I asked his aide if he dresses himself. She said his wife lays out clean clothes for him to dress. He said something funny and the people on the elevator laughed. It didn’t register with me. I wish it had. I want to laugh. I’m so humorless. It’s the one thing I miss the most.

*****

Suddenly Mad- The Moral of the Story - Wheel of Life at Rubin

Jeremy and Dawnette gathered us around the composition called The Wheel of Life. I initially faced the TV monitor with an ad about the museum on the screen. I was not orienting myself until Jeremy redirected me to turn my folding metal and fabric chair, and look at the painting. It’s things like this that make me see how disoriented I am. I’m out of sync.

It is said that Wheel of Life was designed by Buddha himself and illustrates his fundamental insights into the nature of existence, rebirth and the cycle of unenlightened existence called samsara. The painting’s details are supposed to remind us of the benefits of positive actions and the dangers of accumulating bad karma through negative actions. I thought of the ominous email message I received from my sister the previous day (and then found out from her that it was my brother in law who actually wrote it). It was nasty and suggested I have this disease because of my karma. But is it true? Did my brother in law get his own long term chronic physical illness because of bad karma? Did Michael end up in late stage Alzheimer’s because of his karma? Did Amelia end up as she is now, progressing in this horrible disease because of karma? There are so many tragedies that the human condition is fraught with. Do the lucky ones prevail because of good karma?

How I wish my sister would have cared enough to come and see me upon learning I have Alzheimer’s. She’s probably afraid to see me. It’s so much easier not to.

How sorry I am for any ill will I have communicated to loved ones and friends. I am sorry for being a fighter, holding onto anger, and not having the will power to walk away. I was abused in my family of origin, abused and neglected. I have been hurt a lot, and when I was well I had the resilience to move on, to value myself and put my energy into positive action. Now I have little energy, little energy to move my body. I have endured blow after blow, loss upon loss. Is this my karma?

I ask G-d for forgiveness for being the ogre that my family has found me to be. I ask for forgiveness from each of them if I have in ways created a karma which made me get this disease, and has made me a burden to my husband and children. I wish it hadn’t happened. Forgive me if I have brought this upon us through my own karma. I wish to be released from the vicious cycle of negative action and thought.

Suddenly Mad- The Moral of the Story - Jeremy docent in front of film projection with offerings of incenseJeremy brought us up to the third floor where we sat in front of two screens projecting images of a Himalayan ritual in which people burned incense as an offering. In Buddhism this is a sacred offering. The burning of incense results in fragrant smoke and teaches the necessity to burn away negative qualities within oneself in order to reveal the pure self within.

I sat next to Ira and his wife Sandy (who has dementia) as we looked at the projections. He is devoted to her care. They were a professional team throughout their marriage, and now are a team living life, together accepting the changes in Sandy, and managing their days by going dancing, attending concerts, visiting museums – filling their days with as much joy as they can. What I see in Ira is that he faces his life with courage, confidence and kindness.  I also see the strain he experiences, but his spirit enables him to be warmhearted, friendly and considerate. It’s a choice to be this sort of person.

Suddenly Mad- The Moral of the story - Rip Van WinkleWhich brings me to Rip Van Winkle. I have begun reading  from a collection of the best known and memorable short stories by great American writers. Rip Van Winkle is a ne’er-do-well who sleeps 20 years and upon waking is startled to find how much the world has changed. Washington Irving the author, shows us that Rip Van Winkle is a character who always has been, is, and always will be. There are millions of people around the world who take his nonchalant view of life, his uncaring, unmotivated attitude and accomplish absolutely nothing. Rip is an icon of the stagnant, the lazy, and the useless. He is the person who goes through life never fully living it and before he knows it, is old and dying wondering where has the time gone.
I was never like Rip Van Winkle, but in Alzheimer’s have seen that I’ve been robbed of my former motivation and lust for life. I’ve become like him, as I had to give up my passions and my work because I could no longer do these things. I do not like the person I have become in this disease. Lazy, self absorbed and fearful. I used to think I’d never retire. I had ideas,  creativity and boundless energy. I was devoted to my children, my teaching and creating art and films, and suddenly the meaning in my life is gone. Poof. Everything that I treasured and had meaning changed. I was independent. Forced to retire, I have had to fight the disease and find new motivation, and it’s been extremely hard to do.  Some of my dementia buddies I meet with on Zoom chat have poured themselves into advocating for people with dementia to have a voice. They advocate for changing laws and are speakers at conventions that show that there is life after diagnosis.

In my way, I do that here in this blog by sharing my thoughts and experiences, my consternation about the stigma of the disease, and how people treat those who have a dementia diagnosis. I share my battle with this treacherous disease, and how people with it manage their lives with caregivers, aides and support. I rail against the system that medicates dementia, and places us in nursing homes, removing us from our communities, our families and friends.

My life is very small now and I do need a good deal of support. There are real fears that involve progression of the disease. But as long as I can, I will continue to find a way to share, and learn and teach.

Suddenly Mad- The Moral of the Story - walking back home from Ruth_s

This is the view as I walk down my street on my way home after visiting my friend Ruth. I am honored that she is my friend. She teaches me with her kindness and acceptance what friendship is. I tell her she is my friend at the end. She allows me to be who I am now and accepts the reality of the changing nature of my impairments. She teaches me acceptance. It’s the hardest lesson to learn. For anyone.

Flummoxed

Suddenly Mad- Flummoxed (kite in the sky 1)Knowing that you do not know is the best.

Not knowing that you do not know is an illness.

Truly, only those who see illness as illness

Can avoid illness.

The sage is not ill,

Because he sees illness as illness.

Therefore he is not ill.

Lao Tzu 

I am humbled by the words of Lao Tzu, but I am not a sage. I have an illness and I am aware and know it has robbed me of the life I have had. I know I am progressing in this illness. I do not know when I will not know this.

******

For the thing which 

I greatly feared is come upon me, 

and that which I was afraid of 

Is come unto me. 

I was not in safety, neither had I rest, neither was I quiet; 

yet trouble came. 

--Job

It’s been over two weeks since I went to New York by myself to the Rubin museum program for people with dementia. The glow of independence that came with the courage to venture out alone and travel there, has dimmed. The days following that spark of triumph, I sank.

Keith is gone, and with him the regularity of walks and Scrabble, speaking Yiddish, and hearing his stories.

One friend I love, who was visiting me for months, has told me he is taking a break.

Great sadness followed. Please know how important seeing your smile is to me. While it’s the prerogative of people to disengage from difficult situations, please know that people with dementia need more friendship, not less.

*****

Abandonment. I had a mother who was not able to find comfort in herself. She would get up at night when everyone would go to sleep, and pace the floor in the living room, wailing into the night. It was relentless. I would hold my hands over my ears until sleep overtook me. She was inconsolable. I did not know it was dementia. I thought she was crazy. Is it the same thing? It is said that dementia robs a person of their normal emotional self-control.

I should not have covered my ears when my late mother railed into the night. I should have gotten up and led her gently back to bed. Gentleness and communication. Not disciplinary action. Not withdrawal. Do not abandon the person who has dementia.

*****

I’ve questioned my husband, “Do you want to sell the house and then place me into a facility for people who have Alzheimer’s in Connecticut? Is that what you want”? He says yes let’s go there and see it. At times he is at the point where he willing to sell our home and place me. I am not incontinent, can dress myself and feed myself. I’m oriented and find my way around. Of course, I don’t want to go, but being yelled at and called the word that rhymes with witch, left alone to sit in silence, eat in silence, never a touch or a hug from the man I married, makes me forlorn. Wouldn’t it make you forlorn to be treated in such a manner?

I fear placement. But he is not able to deal with my dementia, and the disease only gets worse. What to do? I read the posts from spouses on www.alzconnected.org  who run out of energy and compassion. They become depressed, remove themselves emotionally and place their spouse if they have the money to do so or have worked out the insurance. A few of the religious ones who have the spark of spirituality and love in their hearts, seem to be able to weather the storm of this horrible illness, get help at home and keep going. They know it’s not the person’s fault that they got this disease. They walk the walk, and know they are walking the person home.

*****

So I’ve learned to give him his space and stay away from him when he needs to rest. He texts me to check on me. He’s a great texter. Sometimes he lets me know he is on a different floor in our home by texting me. He has a way to follow me on his phone. He is watching from afar.

His back has been very bad, and he has gone to the chiropractor, gone to a physical therapist, had acupuncture. He has done things that have aggravated his condition. He seesaws between self-destruction and self-care. I am a constant presence and he tries to escape it by shutting himself away.

*****

My daughter. Be patient I beg. Of course, she can not possibly comprehend what I am experiencing and she is angry and tormented herself, having lost the ballast of her ship, her mother, lost the mother she knew, replaced by this alien being that is the me I have become and am becoming. She recommends hiring another caregiver. She wants little to do with this. When she comes here she is stern and demanding that I comply. Has told me that her father should have left already. She is so angry. It’s all so unfair, I know. If she knew anything about the progression of Alzheimer’s, how could she, my own flesh and blood, say he should have left?

I watch her flee, I call out…”I am still here…I am so sorry”.

*****

I have to live with this. There is no one who is going to save me. Clinging is not the answer. No one is going to save me. Friends and family can only stand by and hold my hand, temporarily.

I have compared myself to those who do not act as I do and say they have been diagnosed with this disease. They are calm and have a sense of humor. One of them says that a pity party will be a lonely place to be, because no one shows up for that party. He is right. So why can’t I be more like him?  Probably because he’s at a much earlier stage in the disease.

I’ve seen the ones who are further progressed with their home health aids, or caregiver/ spouses who cart them around. They could not possibly live alone without assistance. I know the difference between progressing Alzheimer’s and mild cognitive impairment. I have the former. Yet I am maintaining as much independence as I can, because I want to remain in my home and be able to live in my community. The alternative is the specter of selling my house and putting myself in the hands of an institution that will take over my care. I will be unfamiliar with the place. Will probably be medicated.  I will not be able to walk to familiar places by myself as I do now, will not be familiar with anyone and will lose what little freedom is left.

*****

There are no home health aids coming to my home now. For now it’s better this way. Ruth has been coming over to see me several times a week, both when my husband is here as well as when he’s not, and has invited me to her apartment, where I finally have a destination in this town. It’s been great and I am thankful to have a friend I can visit who is so welcoming and accepting. Today I went there in the early evening. Yesterday she came over and I read to her, then we walked to the bank and I  deposited a small check to my bank account, used my ATM card successfully,  remembering my pin number and handling this as I had in the days when going to the bank was no sweat. I showed her where we used to live when my husband and I first moved here, and reminisced  about taking my son who was three years old out for Halloween trick or treating. I had dressed him as a carrot, made a hat for him out of oaktag that I cut out and painted to look like carrot leaves, and I dressed him in orange clothes.

We were walking along the main street and I saw a man who I’ve known for 35 years, who has a daughter who is my son’s age. I met him when he was married to her mother and our babies attended the same play group. He divorced her and remarried a woman with the same name as his first wife, and had two sons, both of whom were my art students. I said hello and he came over offering to catch up with me about our lives. I smiled and said it was too complicated to get into. No announcement that I have Alzheimer’s. I don’t have a close relationship with him, never did. Running into him on the street was quick and pleasant. His life is going swimmingly I can see. His sons are brilliant and talented and his wife, a musician, owns the coolest bookstore in town which has become the center of all things artistic, literary and musical. No sense burdening him with my story. A wise choice. Ruth and I walked up Stevens Tech hill to Castle Point terrace through Elysian park and over to 11th Street and turned towards the river and over to her apartment building. She uses a walker but it doesn’t stop her from being adventurous, active and going places.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (close up of Ruthie)

Before this happened, I was always having an adventure. Life was an adventure. The highs and lows. I was able to ride the crest. I was sailing, tossed on the sea of life, and always regained my balance. I was a teacher, a mentor, took many of my students to Europe several times – to Italy, to Greece and France. After my husband moved to Connecticut, I would venture out boldly. The documentary I directed and produced led to the Fulbright in Poland, a full year there living in the former Jewish ghetto in Lodz, teaching at the university, organizing a film production. After that there were presentations in Israel where I met long-lost cousins and saw Jerusalem and Tel Aviv. Then back to teaching here followed by more presentations in Poland, in France and Israel. I was intrepid. Until 2014. That was the last independent trip. I was invited to present the Lilliput project at The University of Jerusalem, and was intent on finally finding a producer for the film. The film that was to be my breakthrough movie became my downfall. The film about a dwarf who hid in garbage cans during the Holocaust and survived, based on a true story about a little person who had been my father’s friend from Gombin. The film that was inspired by seeing this dwarf’s photograph on my parents dresser as a young child. I had driven myself crazy trying to attain a goal I could not achieve. Curiosity killed the cat. It would have been great  https://vimeo.com/91234297

*****

I love my children and they loved me, when I was well. But they no longer needed me, when they were ready to leave the nest. Empty nest syndrome. The deep mourning I felt when they both moved away and didn’t need me anymore. That was between 2012-2013 and I became depressed. I so identified with being their mom. I had been cast aside by a husband who was never really able to find solace in being with me, living as he did for nine years in another state, and visiting me for a day or two on the weekend. Then he returned. He returned after I had done all the heavy lifting, and the kids were launched.

After years of finding ways to manage by myself. Renting bedrooms to Chinese engineering students to make ends meet. Working two jobs, one as an art and art history teacher, and another as an adjunct at NYU. Managing the house and overseeing the rentals to tenants. My son got married. My daughter moved in with her boyfriend. My sister refused to honor my late father’s will. She refused to have his will probated. She simply kept everything.  She railed at me “you killed mommy”, after I tried so hard to help, flying to Florida to see her every two weeks for the two years. She was in the hospital and in very late stage for two years after a stroke brought on by being administered doses of Haldol. I brought my father to New York so that he would not be alone in Florida. He was in failing health, and I asked him to come and live with me and my family. He decided to live in my sister’s  home. She was his favorite. He paid off her mortgage, made her the executor of his estate, built an addition to her home. I had to have surgery, a myomectomy for a bleeding fibroid in which I lost 50% of the blood in my body and my hematocrit went down to 5.3. My sister didn’t believe I was having major surgery.  I had a job and was recovering and when I was able to see my father she would listen to our conversations on a baby monitor she installed in his room. I took him to Columbia Presbyterian hospital where the doctor told me she was overmedicating his Parkinson’s disease and that he was hallucinating. He did not want to live with me. He made that choice. My mother died in 2001 two weeks before 9/11 of pneumonia and late stage dementia, and my father died in August 2006 of cardiac arrest. My sister was in her ultra Orthodox Jewish phase then, and sat on a low box during the Shiva. She called out loudly to me in front of a group of people who had come to pay their respects, “Don’t come here to collect!” These are things I remember, and they are the truth.

I was exiled in my family of origin, and I am now exiled within my own family, the one my husband and I created, because of this disease.

******

We were flooded in Hurricane Sandy. One of the worst homes flooded here. We had rebuilt the downstairs, fought with the insurance company which tried to cheat us, had to take out a home equity loan, finally had rebuilt everything on the ground floor, everything was ruined. We contracted a beautiful new kitchen, bathroom, new appliances, a generator and sump pumps installed. I had previously dealt with three termite infestations (the pesticides likely impacting me and potentially contributing to the development of Alzheimer’s, along with multiple anticholinergic medications prescribed by psychiatrists that I should never have been on). I thought the worst was behind us. I hired a young man, a friend of my daughter’s boyfriend to plant a beautiful garden in the backyard. My son got married and bought a house in the suburbs. My daughter started to freelance at a multimedia media company and was climbing the rungs. Everything was going to be okay. The house was manageable. The kids had their lives. My husband finally bought a car after years of taking the Metro North to visit me on weekends. His plan was to work remotely two days a week and drive to Connecticut the other three. He moved back. I was working. And then this happened. Not all at once. First came the depression and anxiety. A changed sense of my reality. By the summer of 2015 I felt that my thinking was scattered. My personality which was never easy, changed and I could not bear the anxiety. I had been weight training and exercising but no amount of exercise calmed me. I became angry with him for having abandoned me for 9 years and here was back as if that had never happened. I could not adjust to his presence. Then the medications for depression and Ativan and Klonopin and a paradoxical reaction in which I lost my formerly normal sleep cycle and made me stutter. Detox from the meds and then a downward spiral that ended with the diagnosis of Alzheimer’s and progression.

Suddenlymad FlummoxedI do remember telling him that instead of moving back, I wanted to move with him to somewhere in Connecticut. I no longer wanted to work. I was burned out. I had been pushing myself beyond the brink. He thought it was odd that I wanted to move there, and he moved back. I know now that this was developing for a long time. The preclinical phase can go on for a decade or longer. I was under way too much stress for far too long. The dam broke.

Suddenly Mad- Flummoxed (sad New Yorker) maybe homeless)

*****

I wonder how long this has been brewing. This disease. There were signs. I remember once walking through Church Square park and looking down the street towards the hospital with its new emergency room wing. I was disoriented and for a moment did not know where I was.

I remember that I wasn’t able to learn to save art images/files in a program that my colleague used for teaching art history. He showed me how to use it several times, but I couldn’t get it, didn’t understand the simple procedure. I continued to use links from images I’d find on the web and would email these to myself. I created my own way to save content. My own way ended up taking many hours of research, and each time I would teach the class, I would have to recreate this content. In 2014 I noticed I was having trouble remembering certain students names, and did not remember some of the  parents names. I lost my wallet on the bus. I lost a Movado watch. I would constantly forget my keys at school. I had multiple passwords for multiple accounts, and kept them saved on my computer. I couldn’t remember them.

Anosognosia is a deficit of self-awareness, a condition in which a person with some disability seems unaware of its existence. In those with Alzheimer’s disease it is manifested as poor awareness of deficits.

I think I had Anosognosia early on and likely had mild cognitive impairment before the onset of Alzheimer’s. I was unaware of any deficits and pushed myself. Because I was a gifted lecturer and inspiring teacher, it did not appear that anything was wrong cognitively.

******

I reached out to the rabbi and the synagogue, when I saw that foods were rotting in the refrigerator. This spoke volumes about what he felt. He quickly got better at making sure there was food when he saw that others were coming here.

Hear me my dear children, my husband. I mean you no harm. I am telling the truth. It’s a disease and because of it I can’t do and be who I was. You will have your lives, your days, nights and dreams.

*****

People who are kind show up. Monique with her wonderful smile and easy manner. Her mom has been diagnosed with early Alzheimer’s, but is still pretty functional, gets around Manhattan where she lives by herself. Her mom has the slow later age type of dementia I believe, as she’s 78. It’s not what I have. Monique brought a tunafish sandwich and an apple. she is coming again tomorrow. Thank you. I remember the meals. The thoughtfulness.  I drew this portrait of her that does not do her beauty justice.

Suddenly Mad- Flummoxed (Monique Haas drawing)

I’ve been taking photos of people on my iPhone and I draw them. It’s an homage to them. They are being kind, thinking of me and showing up at this most difficult point in my life. It gives me purpose to have people visit me. I get up, get dressed and greet them, and they spend time with me in my garden, in my home, we talk and they tell me their stories, talk about themselves and their lives and listen. Some have had relatives who have or had this illness.

Alzheimer’s is a highly stigmatized disease, and it takes a certain kind of person to be inclusive and generous when it’s so much easier not to bother, and look the other way. I may not remember the name of everyone I have met recently or my students from long ago, but I do remember who visits me. Jeannie is Ruth’s sister and comes every week with meals for the day and some to freeze. Jane, Zehava, and rabbi Rob visit. Elizabeth comes. Her mother had early onset and was a brilliant woman who was diagnosed at age 54. Tara came for a while with her daughter. Emily is pregnant and with a young baby who is one and a half, won’t be able to do this much longer. Bob is Jeanne’s husband and comes to play Scrabble. Harry needs a break, he says. Now there is Ruth who is much more than a visitor. She’s a friend. Accepts me. I am grateful.

Suddenly Mad- Joseph Pratticus detail

Joseph and his wife Diane drove here to see me on Saturday. I met him only once at The Rubin museum, and he has been reading my blog and sending me long emails about his faith and stories about his life. He told me knowing me has sparked a new level of thankfulness in him for the very things that people take for granted; getting dressed every day, ease in taking a shower, preparing foods, eating, sleeping, the simple everyday things that are now so difficult for me. In his youth he attended Stevens Institute and became an engineer. This town is a part of his past. He attended Stevens Academy which was torn down and now is a condominium building across the street from Church Square park. My friend Zehava lives in that building and has a beautiful two-floor apartment that faces the park.

Suddenly Mad- Flummoxed (Marconi with eagle sculpture Church Square Park)Joseph, Diane and I walked through the park and from afar Joe thought he saw the statue of Athena. What he saw was actually a statue of an eagle, and below it, a high relief sculpture of Guglielmo Marconi, the inventor of the wireless radio. Interesting that in my research on this sculpture of Marconi, I learned that Marconi was a Fascist and Benito Mussolini was the best man at his wedding.

I try to connect the dots. I’m glad that I showed Joe and Diane the facade of the beautiful synagogue where my son and daughter were bar and bat mitzvah.  Friends I’ve made there read my blog and they are the ones who visit me and some bring meals. Although it was a bit of a hike for Joe and Diane, as this is near the south end of town, somehow it seems apropos showing this to them, knowing now that Marconi was a Fascist, and that his statue stands in Church Square park. My small personal attack on Fascism of the past, and my interpretation of why history is important to the present.  Ironic that it is Marconi’s vision of universal communication that ultimately lead us to Steve Jobs, and this computer that I am typing on. Yet he was a Fascist who wanted to own the airwaves.

Suddenly Mad- United Synagogue of Hoboken facade

Which brings me to G-d who is a constant presence in my life and the one who is holding my hand and my heart. I’m alone with G-d now. I can try to connect the dots of history and try to untangle the question of “why me?” But I do not know. My brother in law has told me it’s my karma. My sister has refused to see me though I have begged her to come and reconcile, forgive each other. I will likely never see her again.

I only know my number was called and there are some beautiful souls who are showing up at my door and reading this. They are wondering as I wonder…why did this happen to someone who gave so much, was so strong and now needs care at an age where others are enjoying life and adapting to aging? How long before I am not able to even ponder that question?

Suddenly Mad- Flummoxed (kite in the sky 2)

 

alzheimer’s or ALZHEIMER’S

Suddenly Mad- alzheimer's or ALZHEIMER'S and my daily triumphs- TRIUMPH in the sidewalk on 17th St.

I went to The Rubin Museum in Manhattan on Friday by myself!

It’s on the third Friday of every month. I hadn’t traveled by public transportation to the city alone in well over a year (almost two years!). I am always accompanied by a home health aide, paid companion, or by my husband or daughter. I took the photo of the word TRIUMPH on 17th Street on the same block as the museum. It spoke to me.

I did it!

Why did I go alone? I realized that I had given up my independence too early and I still have the ability to navigate routes that I am familiar with.

But the main reason is that yet another paid companion has bit the dust. Keith told me he has to work for his agency for 100 more hours to qualify for continued health insurance, and we were paying him privately. He told me he has to take care of himself. He had accompanied me there for the past four months on the third Friday of every month. He’d come to my home at 11:30am and we would gear up to go. Now he is no longer going to come here at all, which makes me sad, because I had grown attached to him. We would go for walks to the park and along the waterfront, he’d play Scrabble with me, he’s tell me stories about his life. He made sure I ate lunch. He’s read my blog and used to comment. I thought he was my friend. I thought he cared about me. That’s how it is. Paid companions leave.

My husband works remotely from home on Friday’s on his computer. He needs to do this. He’s an employee. He’s not retired, and can’t always be available to be with me if I need to go somewhere. The Rubin museum program is where I have met people who have Alzheimer’s and dementia. Younger onset people, like Scott, the former plastic surgeon, and Maureen who could only tell me she remembered she did something in a school but doesn’t remember what it was, and told me she has two grown sons and is married. There is sweet Sandy who is married to Ira. They worked together professionally as management consultants and they have published many books. Now Sandy has Alzheimer’s and Ira is always with her. He is an amazing caregiver and loving husband. They love each other very much.

There are the wonderful warmhearted administrators and docents in the program, among them Laura Sloan, Robert Allen and Jeremy, who know so much about Buddhist and Tibetan art, and are always so welcoming. There are the older men like Arthur, who often says everything in the museum is beautiful. There are the volunteers like Joyce, who is attentive and who reads my blog, and who’s mother had Alzheimer’s. And yes, there is Michael in his wheelchair unable to participate at all, in late stage, but still present in his way, along with his cheerful aide Georgia. I wanted to see these people again, and wanted to see the art, so off I went…alone.

I walked the 12 blocks to the PATH and the trip from Hoboken to Manhattan on the train was easy. It’s literally 10 minutes once the train leaves. I was concerned about the cacophony of sounds in the city being too much for me to endure (sounds don’t get filtered and everything ends up being loud), the crowds on the street being too much for me to navigate around, but it wasn’t that way. I was focused on getting there and alert. I was prepared. I got off at 14th street and walked up the three flights of stairs, turned right, waited for the green light, crossed the street on Sixth Avenue, and headed to 17th Street and turned left and walked towards the museum. That’s when I saw the word TRIUMPH which looked like it had been soldered onto a metal plate. I took this as a sign that I was doing the right thing, a good sign.

When I got there, everyone was already seated, having tea at the long table that is set up for our group. I announced to Scott and Lin, an older volunteer, that I had come alone. Lin expressed concern, and told me how important it is for me to have a medic alert bracelet that says memory impaired. Scott showed me the black silicon one he wears. I told them that my husband had ordered one, but not in time for this trip. I told Laura I was there by myself. I told Robert. I told Ira, who was sitting with his wife Sandy and some of the regulars at another table. Then I felt embarrassed about making such a big deal about coming there solo. It felt childish. But I wanted to let folks know how important this was for me. Like I was wearing my big girl pants. I wasn’t going to let Alzheimer’s stop me.

I’ve read about the wanderers who get lost. I’ve read it happens in the moderate stages – sometimes (in around 40% of people). It’s not likely to happen to me as I’ve become so timid and stay in the house so much, and sit so much, but who knows? My husband ordered the Medic Alert bracelet, that will say Alzheimer’s / Memory Impaired and it gets registered with a 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (Chitra Ganesh animation at Rubin)We took the elevator to the second floor and Robert and Laura showed us a digital animation, by the artist, Chitra Ganesh, called The Messenger. The photo is one frame from an animated loop that plays over and over. Ganesh adopts elements from the historical objects in the museum that relate to the Future Buddha and Second Buddha. She takes these mythic elements as inspiration in creating a personal contemporary narrative. In this frame a woman looks through a telescope lens. She’s supposed to be  peering into the past and the future.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (Kaumari repousse goddess sculpture at Rubin)This is a repousse (a technique in which three dimensional forms are hammered from a flat sheet of copper) sculpture of the goddess Kaumari, a Hindu goddess that fought a demon and won.

The Kathmandu valley is famous for the custom of worshipping a real young girl chosen by the priests to represent this goddess. Laura showed us images of a beautiful little girl dressed up as the goddess who is carried among the devotees. The girl remains deified as the goddess until she begins to menstruate, then is no longer considered a goddess. We talked about how this transition from a deified being in childhood, to becoming a commoner as a teenager, must be so difficult.

A personal reflection that this sculpture and the discussion prompted in me is that becoming a teenager exposed me to a world I was not ready to tackle. I thought I was prepared but I wasn’t. My parents were older parents when they had me, already in their forties. They were not equipped to deal with the 60’s counterculture I was to become absorbed into after junior high. My mother  could only deal with raising me through age 12, the year I began to menstruate. In fact, I remember my mother not believing me when I told her my period had begun. She would not continue to be a nurturing mother beyond that age. The modern world was too big for her, and I was about to become a part of that world.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (Prayer wheel - Rubin)This is a 17th – 18th century prayer wheel. This huge one is elaborate with paintings of deities on the outside. It contains a revolving cylinder inscribed with prayers, a revolution of which symbolizes the repetition of a prayer, used by Tibetan Buddhists. A person would turn the cylinder from the outside and recite the prayer over and over.

*******

The program lasts only an hour and a half. It was time to go. When Keith would take me, I used to buy lunch for both of us in the cafe and by the time we got to the PATH, rush hour would have begun. It being Friday, I figured I had better not hang around and risk getting to a crowded station with no seats of the train. Robert was going in the direction of the PATH, so he walked with me the four blocks and off to Jane Street he went, as I descended into the underground for the ride home. I called my husband when I got out of the train and onto the street in Hoboken, and walked the 12 blocks home. We hugged and he congratulated me.

*******

A PORTRAIT OF RUTHIE AND MESuddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (Drawing of Ruthie and Minna - pink purple background)Jeanne has become a special friend from my synagogue who has been bringing me meals and visiting every week. She’s one of the first people I told about my diagnosis, and has now become a regular presence in my life. She’s such a kind soul and a truly accepting person. A few weeks ago she invited me over to her lovely home which is only 5 blocks away, for lunch to meet her younger sister Ruth.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (close up of Ruthie)

Ruthie moved to Hoboken last summer. Since we met, we have spent a considerable amount of time together in my home and I’ve visited her in her apartment, which is a stone’s throw from the waterfront. She’s become a good friend. She has her own major health issues and uses a walker a lot of the time to get around, but doesn’t always need it. She’s told me a good deal about her life and I have told her about mine. She became a Jehovah’s Witness twelve years ago. We’ve discussed religion. I know that she was born a Jew, but she doesn’t feel an affinity towards being Jewish. It’s not her religion any longer as she has great faith in Jehovah. I was curious about the meetings she attends at the Jehovah’s Witness Kingdom Hall and accompanied her there one Saturday, a few weeks ago. The meeting was much like a big classroom with a television monitor showing New Testament bible passages, and a discussion that followed with participation by members. Jehovah’s Witnesses emphasize the use of G-d’s name, and they refer to the form Jehovah – a vocalization of G-d’s name based on the Tetragrammaton. This much I knew.

I remembered that originally the text of the Hebrew Scriptures consisted of consonants without vowels. The divine name is represented in the consonantal text by four consonants, the Tetragrammaton (Greek for “the Four Lettered [Name]“), Y-H-W- H. In later Hebrew this name is termed the Shem HaMeforash, “the Explicit Name.” Because of its extreme sanctity. In Judaism the Tetragrammaton is never pronounced and, in fact, its exact pronunciation is unknown.

I had always prayed to G-d, and felt that G-d’s presence in my life was constant. I felt protected. I had a good deal of close calls with my health, my well being, but always had the strength and intelligence to guide myself back to a baseline. I embodied some of the outer trappings of Judaism; I was a member of the synagogue, observant of Shabbos, valiant matriarch of my family imbuing my kids with Jewish learning, a devoted Jewish wife….

With the diagnosis and progression of Alzheimer’s, I have wondered was I cast out? Was  G-d’s there as my rock and redeemer? Why have I been floundering like a fish with a rotting head, flapping it’s body on dry land? What happened to my faith?

Then I reached out to the rabbi and in turn he reached out to people in the synagogue to visit me and bring meals when my husband isn’t home. In a sense it’s because of Judaism that I met Ruthie. ____________________________________________________________________________________________

Everyone who comes into (and goes out of) my life now has great significance to me. Keith the companion who quit is a Jewish man who attended yeshiva. I found him myself, searching on Caring Kind’s website, and called him because I thought culturally he would get me (same age, Jewish, educated, speaks Yiddish in addition to being fully fluent in English, a New Yorker). The home health aides who posted their profiles were so different from me culturally, educationally. I thought Keith would be a near perfect companion. Yet I see that Keith is no different from all the hired workers who previously spent time with me. They are all human beings on their own journey, and have little use for a woman with early onset Alzheimer’s. I value the time we spent together, but it’s over. I was their job for a period of time. I do not like being someone’s job. I prefer friends. I’m still here and will carry on.

******

I know I’m on the most erratic part of my journey and that my life has gone awry. The Alzheimer’s diagnosis has become ALZHEIMER’S progression. In three years time what began as depression and a lack of motivation, has progressed to profound anxiety, confusion, drastic mood swings, major sleep disturbance, and the loss of so many of my former abilities, many of my instrumental activities of daily living. My short term memory is gone in as little as a few seconds. I have prepared around 6 meals this year, mainly involving eggs. I get dressed by putting my clothes on a hanger the night before. I live according to a list so I can remember what to do in a sequence of steps throughout the day. Routine is my friend. Arise, take thyroid, tea. Coffee and use the Fisher Wallace Stimulator (a wearable neurostimulation device cleared by the FDA to treat depression, anxiety and insomnia) and Lumosity games played on my iPhone. Shower, dress, brush teeth, apply makeup. Eat breakfast, take Rivastigmine (the cognitive medication) and chew a baby aspirin) with a protein shake….Zoom chats with dementia buddies…maybe go out for a walk if the weather permits….read, read, read….draw…eat lunch, take supplements….get on my recumbent bicycle…walk more…read more…draw more….write…

*****

I have prayed to accept this disease, to find ways to adapt as it changes, prayed to have the courage to travel alone again. On Friday I had alzheimer’s not ALZHEIMER’S. I was able to prove at least on that day, that it doesn’t have all of me. I was able to compartmentalize this terrible disease for one day and carry on. That  prayer came true because of my own grit, determination and the need to regain some of my independence.

Suddenly Mad- Triumph or Alzheimer_s or ALZHEIMER_S (my daughter and my granddaughter_s hands)

This is a photo of my daughter’s hands and my granddaughter’s hands. Last week was Mother’s Day and my family gathered here, my son and daughter in law brought Ellie, our granddaughter. My daughter was here with her boyfriend. Everyone brought flowers. Life is generations. I see the wheel turning. One following the other in a succession. My daughter in law announced that she’s pregnant with twins. They will be born sometime in October. My hope is to be able to see them and hold them and photograph them, and be able to write about it. That will mean it’s still alzheimer’s and not ALZHEIMER’S. May it be G-d’s will to give me the strength and time to carry on.

The Alzheimer’s Circus

Suddenly Mad- The Alzheimer_s Circus

Alzheimer’s is a terminal disease that changes the brain. Along the way, many who have it go, what is known in the common vernacular, as completely crazy. This is the main reason the disease is severely stigmatized. It’s why some who have Alzheimer’s end up in psychiatric hospitals, and are prematurely placed in memory care.  It’s why many of these folks get medicated (medical restraint). I’ve read on the spouse forum on www.alzconnected.org about the spouses that become psychotic and wanderers, become violent and even criminally insane, and are institutionalized. I myself have been to the edge and back, my poor family members have witnessed behaviors in me in this disease, I shudder to think about when I remember. The difference between the crazy of Alzheimer’s and the crazy of say, schizophrenia or psychosis is that they are not fatal illnesses (although they can and often do shorten a person’s life). Alzheimer’s does and will kill a person along with making them nuts as they live through the stages. As it progresses it affects all bodily functions…mobility, talking, swallowing, excretion, and ultimately breathing. The brain rules the body and the brain tells the person with Alzheimer’s to slowly (or quickly, depending on how fast the pathology progresses) to stop remembering everything from thoughts to basic bodily functions. That’s a simplified version of the process, but that’s what happens. So why is it thought to be a memory disease? Because the brain is losing it’s ability to hold onto itself in the present…everything it has ever learned.  Early on that is often recognition and the memories of learned experiences…how to do things…making decisions, complete tasks. Later walking, talking, using one’s hands, swallowing are affected. It’s a reversal of everything one has learned from the time one is born. It’s an unlearning. It’s time in reverse.

At this point regression in the disease has manifested in many ways, but new and  markedly, I notice my changed voice. Along with word finding (aphasia), I now hear a child’s voice when I speak, an alien voice, in place of the mature voice I had. I was trained initially in the dramatic arts. As a teenager at the High School of Performing Arts in NYC, I had classes in English Standard Speech, a form of elocution. I prided myself on not sounding like I was raised in the Bronx! When I speak now,  I hear my voice and it’s not the voice I recognize. My thoughts form but when I speak there is a disconnect. I’m disconnected from my former self. It makes me feel stranded.

________________________________________________________________________________________

There is only one way out of this illness and there’s no getting around it. I am still here and able to write and communicate, entertain myself, put a face on this disease, de-stigmatize it by humanizing my experience for you, as much as I still can. I make no bones about it though. It’s a horrible disease, and awareness of the losses as I progress are devastating. Life loves life, and nobody wants to say goodbye, but this insidious and treacherous thing called Alzheimer’s is a Holocaust of the brain, and I get to a point…where…

Suddenly Mad- I Want Out parody poster

I am using this vintage image of a poster made in 1971, originally made as a parody of the U.S. army’s ubiquitous First and Second World War “I Want You” recruitment posters. I took a photograph of it while visiting an exhibition, Remembering The 60’s, I went to after attending the last Alzheimer’s Association early stage support group. It works well in the context, don’t you think? Me and my dark twisted sense of humor.

___________________________________________________________________________________________

I led the way. My husband encouraged me to not take his arm, but instead walk way ahead of him. I read the bronze plaques installed in the cement on the library walk on 41st Street, and snapped photos as we approached Fifth Avenue.

Suddenly Mad- I want everybody to be smart plaque on the NY Public Library walkSuddenly Mad- Facade of The New York Public LibraryThe New York Public Library Beaux Art facade beckoned majestically. I crossed the street and climbed the stairs and entered. My husband followed me. The exhibit was free and I wanted not only to see it, but to be in that space, a place I’d last been in over 3 years ago before all of this started to happen to me. I’d last been there with Raphael, my student, and the memory of my normal self vs. my Alzheimer’s self, was jolting. My sense of occupying this grand space was different. Skewed.

Suddenly Mad- NY Public library rotunda

The exhibit is a perfect example of how one can’t really experience another time period. We can vicariously go back to the Civil War through the graphic daguerrotypes of Matthew Brady, who photographed battlefields, camp life, and portraits of some of the most famous citizens of his time including Abraham Lincoln and Robert E. Lee. But we can not experience what he and people of the period experienced. Those of us who lived through the 60’s, recognize the memorabilia, photographs and posters in the exhibit. We lived it, we experienced the emergence of that new cultural Zeitgeist, and were altered  by it.  I watched the young people who looked at the artifacts, the preserved remnants of that era. I thought about how remote that time must be to them. Those who lived through it might be their parents or grandparents. It also made me think of the saying coined by French writer Jean-Baptiste Alphonse Karr, “plus ça change, plus c’est la même chose, the more things change, the more they stay the same. War, famine, political unrest, the refugee crisis, racism, economic inequality…all factors in today’s world.

Good Vibrations from Remembering the sixties exhibit at the ny public library

Suddenly Mad- Woodstock poster originalSuddenly Mad- thousands of kids at Woodstock photoSuddenly Mad- Eldridge Cleaver photoSuddenly Mad- America is devouring its children poster after Goya_s Saturn Eating his childrenNow the idea of hippies and radicals, the counterculture that confronted societies restrictive attitudes towards sexuality and gender, has been subsumed by subsequent generations and the new New left. Conservatism and liberalism, radicalism – categories and types. Current radicalism is #MeToo, an international movement against sexual harassment and assault. The New Left and the Black Power movement of the sixties reinterpreted Depression era Marxism and inflamed America’s conscience and it’s rage. It extended it’s scope to civil rights, gender roles, environmentalism and the use of psychedelics. The old left moved into leadership roles at the academies and nurtured the new New left. This new New Left can live with its contradictions, because of postmodernism. It finds contradiction politically useful.

_________________________________________________________________________________________

I am no longer a regular active citizen of the hustle and bustle world. Sounds and the tumultuous stimulus of dealing with life as it was, are beyond my ability. I’ve retreated, I’m retired, but it’s not really a retirement, and it was not my choice. I became ill and withdrew. Now when I go out I’m an observer. I pick fragments of experience and piece these experiences together into a kind of  holographic quilt in my mind. I juxtapose everything I encounter, and rearrange the meaning of everything in an attempt to understand. I try to understand what is happening but the world no longer makes sense to me. It’s a dizzying place of activity. I call it an Alzheimer’s circus.

People with Alzheimer’s become increasingly crazed because they do not understand why they are changing, why they need support. I was so independent. Now a sink full of dishes is confusing, and I attack the problem by doing half of them.

I walked leading the way, while my husband followed, but couldn’t be there if he was not there watching me. At the moment I’m directing my care, an oxymoron. If I need care, am I directing it?

I describe my experience, and see that my own words fail me. I use words like hyperreal, fragmented, hallucinatory, but they don’t adequately define this experience.

Why can’t I simply enjoy watching the birds in my garden? Sitting on a bench in the park? Being mindful and meditating? It’s because I was a doer, and I stopped being able to do. I had places to go and things to do. I loved to learn and think and go and meet the day and be surprised and keep my eyes and ears open. It’s quite terrifying actually for sounds to alarm me, for people on a city street to look like obstacles I need to navigate around, to be afraid I will fall because my legs feel wobbly and I’m afraid I will forget how to walk. I have to go slow in a world that is spinning fast. I am trying to keep up…I don’t want to be this frightened old child I have become.

I hear Jim Morrison of The Doors, another relic of the sixties, singing in the recesses of my mind…

This is the end, beautiful friend
This is the end, my only friend, the end
Of our elaborate plans, the end
Of everything that stands, the end
No safety or surprise, the end
I’ll never look into your eyes, again
Can you picture what will be, so limitless and free
Desperately in need, of some, stranger’s hand
In a desperate land

 

 

Museum of My Mind

Suddenly Mad- Museum of My Mind full image

I used to say when Alzheimer’s disease started to affect me severely, back in late 2016, “It is as if I can see, but can’t see”. I would be standing at the sink, trying to wash a dish, and notice that I was having to concentrate very hard on doing it. No matter how much I concentrated the experience of coordinating my sight, thinking and doing, were out of synch. It became evident then that this is not just about memory.

I see it in my eyes in the photographs I take of myself and text and send my daughter, to show her I have gotten dressed and groomed, and to say hello. I see it when I look in the mirror.

Now my speaking is becoming affected. Aphasia. This is new, or I’ve just noticed it in the past few weeks. I hear myself, talking to my husband and friends who visit, the words are halting, as I struggle to complete the thought before it’s gone. I hear my own voice and the sound is twanged. I hear myself speak and it sounds like a child. A stammering child. I know I am 64. I know that this is spoken of as a disease of regressing. I’m an old child.

Suddenly Mad- Museum of My Mind - blurred close up eyes and nose detail

I wrote “why me”? on the shirt, then erased it. When I colored the shirt purple for the colors of the Alzheimer’s Association branding (it looks maroon red here), the indentation from my sharp pencil were inscribed into the paper. The incised lines are visible still. My words were not erased. WHY ME?

Everyone is different of course. When Alzheimer’s hits and it is really Alzheimer’s, the personality changes. Some decline and become sedentary and can’t move much at all. Others become wanderers and agitated if they can’t move. It takes a village to care for an Alzheimer’s person. No one can do it alone, and when caregivers try to, they fray and collapse.

I was an active and engaged professional. I had friends. I was creative, inspired and enthusiastic. I was funny. I worked hard and played hard. I loved my family. loved my kids and loved being with them. Then they grew up and suddenly I fell off the cliff.

My husband/ caregiver (I hate that he refers to himself in that way now, having withdrawn any semblance of a marital relationship) feels imprisoned taking care of me.  I reached out to my community, swallowing my pride. I told people I need companionship and can’t prepare meals. Now people visit. They bring food. They spend a little time talking. Some bring their little children. One says I am very companionable. She stays and talks. We’ve become friends. Today she brought me vegan tacos, muffins she baked and soups she made. How kind she is. A friend at the end.

*****

The past week backwards- a week of hellos and goodbyes

Wednesday, April 25, 2018 – I no longer remember each day but I can check on where I was and what I was doing because of my iPhone calendar. It’s my diary in reverse. A way to jolt my memory. Today I had a Zoom chat with my dementia mentor Laurie. She was in a car with her cousin enroute to a dementia training workshop. Bless her, she motivates me and I was up and dressed. Ready to start the day. Then my rabbi came and we talked. He was able to hear the difference in my speaking. So kind of him to visit, Jeanne came and brought lunch. Following her was Sherine, the home health aide and housekeeper. Today was her last day. I avoided speaking with her, as much as possible. I was too internally distraught about her leaving. I thought it would be better not to talk with her much. She went about cleaning the house, and I talked with Jeanne who stayed for the afternoon. Sherine understood me so well when she began. She knew that there were things I could still do and helped me with tasks in the house. She knew where everything goes, and knew what to do. She says she is going to stay home with her baby. I think it’s more about the hours and the money. It’s not worth it to her to work one afternoon a week with me. You can’t buy a friend. I said thank you and goodbye. 

Tuesday, April 24, 20 –  Rafi who is an intern at the synagogue, visited and said goodbye.  This genial fellow had visited every two weeks for three months, and now he’s moving on. Sayonara. I have said goodbye to so many, over the course of my life. This is different. Now when people go it means I will never see them again. Emily came with her baby Hazel. She brought lunch. I read her a few pages of Pat the Bunny . The same book I read to my own kids when they were babies. It goes like this now. People coming and going, and me standing still. I had a Zoom chat with my lovely friend Jackie, who encouraged me to write, when I told her I was having trouble writing.  “Just let it flow” she said. This is what flowing looks like in my world. The calendar rules, and the images are right side up and upside down.

Suddenly Mad- Museum of My Mind - upside down imageSuddenly Mad- Museum of My Mind full image

Monday, April 23, 2018 – Dementia Mentors Cafe online video Zoom chat. I brought up  the very upsetting 60 minutes interview of Carol and Mike Daly that I saw on Sunday. It’s not what people wanted to talk about. So I will talk about it here. I was about to write on Sunday night. All set to let it fly. Then I went on the Alzconnected spouse forum and saw the link to the segment For better or worse: Following a couple from diagnosis to the late stages of Alzheimer’s. In 12 minutes, 55 seconds, we see Carol’s decline from an average 65 year old lady in the early stages of Alzheimer’s, to a 75 year old woman who Mike describes as a vegetable. Seeing Carol in late stage was terrifying, even though I have seen it in person in Michael, the man in the wheelchair at The Rubin Museum. I never knew Michael when he was well or in the early stages. I have only heard that a year and a half ago he was walking and talking and in a chorus. It was seeing the comparison of Carol year by year, condensed to 12 minutes and 55 seconds that was shocking. Knowing that in only six months I have declined so much, and in 2 and 1/2 years, a startling mind numbing amount of decline. In the beginning of their journey, we see Carol and she is 65 and she is conversational and laughing about the meatloaf that she can no longer make. She can no longer read or watch movies but reacts to the mention of the late actor, Clark Gable, cooing that he was so handsome. Three years later she doesn’t know who Clark Gable is. A year after that she doesn’t know her husband’s name. He applies makeup to her face. He dresses and feeds her. He dotes on her. In 2017 she sits silently alone, no longer able to answer questions. But she does react to music when she hears Little Peggy March singing I Will Follow Him and rhythmically vocalizes sounds along with the song. It’s been found that music helps stir memory even in people with late stage. Yet a year later, this year, 2018, she’s shown, her head slumped over, her back rounded, in a chair fully unresponsive and no longer reacts to music or anything. Yet when Mike puts a morsel of food in her mouth, her procedural memory makes her chew and swallow. She has 24/7 care by aides, along with her husband. We see her being dragged from the bed to the bathroom to be washed by her aide. Her husband is asked if he still loves her. He says he loves the Carol who was Carol but this is not Carol. We learn that ten days later she is placed in a nursing home, after ten years of caregiving which has made Mike feel suicidal. He is done, saves himself. Carol is gone but still has a strong pulse. What a horrible disease this is. Treacherous.

*****

Younger onset Alzheimer’s started to unravel Suzy Bishop who was 50 when she was diagnosed. She had been a successful Hollywood movie producer, won an Emmy, and was an adoring wife who raised two sons, one of whom plays baseball for the Seattle Mariners, and created 4MOM, an Alzheimer’s charity in honor of his mom. While Suzie has progressed and has a home health aide 4 days a week now, she is not where Carol is in the disease, which is the intractable end. I didn’t feel as hopeless about her. Her personality is changed and she appears confused as she tries to function in her kitchen, but the operative word is she trying. I found the email for her and her husband in California, and reached out. I sent my blog and asked her husband to read it to her if she can’t read anymore. I never received a response.

https://www.youtube.com/watch?v=VhZwu8ECbRo

Suddenly Mad- Museum of My Mind full image

Sunday, April 22, 2018 – My husband screamed, “I am leaving, I can’t take it anymore”. Every time I step out the door, I want to kill myself”. What happened? I needed his help getting out of my bed. In order to stand up and put on my robe, and go down the stairs, I needed him. I needed some kindness and I needed to feel loved by him. I am being cared for, but there is no love. He slammed the door, because I asked him to sit on the bed and talk to me. Be with me. He stood on the other side of the room and exploded. “I should have divorced you years ago”. It is cruel when he threatens several times a week to leave, knowing that there is no one else to care for me. Our daughter texts me, “so go into assisted living”. He has screamed, “Go kill yourself”. I wish I had the guts to. He is sadistic. Has physically thrown me out of rooms, pushed me. Eventually his anger passed as I pushed myself up and started the day. It was already afternoon. I went to my list, the one I write every night before I go to bed, with reminders for everything I need to do the next day. I managed to get dressed. We went for a walk. He followed from behind. The weather was warm and sunny, with a little chill in the air. I led the way. I remembered that Little City Books was a destination I used to go to. I remembered it was on First Street, but couldn’t remember the cross street. It came back to me. Bloomfield Street. I found it and we went inside. I used to love bookstores, and would become immersed, reading in the aisles. Now I only eyed the covers, illustrations luring the reader to open and read. I saw Maira Kalman’s, The Principles of Uncertainty. She’s an illustrator I loved and would read her books to my children. She illustrates and writes books for both children and adults. It was the last book I really loved before the Alzheimer’s overwhelmed me.

Suddenly Mad- Little City Books bookshelf

 

I was happy to be outside and we headed to the waterfront. I took photos and sent then to some of my dementia buddies on FB messenger. We ended up walking 3 miles along the waterfront and up Sinatra Drive towards our home.

 

 

Saturday, April 21, 2018 – Got up early and went to have blood drawn at the lab. The doctor who prescribes thyroid needed to see my labs. I had been there before but now was very conscious of how I have changed since the last time, over a year ago. I said little, wanting to get it over with. We left and went out on the street and headed to our car, which was parked nearby. When we got to it I didn’t realize that I was standing  in front of the passenger door and not opening the door. My husband asked “what are you doing?” I have to call this brain frieze. I didn’t know to open the car door and get inside until he said that. I have no idea how long I would stood there. Maybe another a moment. I just went blank. 

Friday, April 20, 2018 – Mindful Connections at The Rubin museum was the highlight of the week. Keith arrived at 11:30am and I was raring to go. Glad that the weather was good, but still cold enough to wear my down coat (having trouble with making the transition to wearing a lighter coat). I saw the usual suspects, and the familiarity was a comfort. Michael was there with his aide, Georgia. He was sleeping, but it was nice to see him anyway and I got to speak with Georgia. Maureen was there, and I asked her questions about her life before. She grumbled about her home health aide, when I asked her if she took care of her every day. Scott was there and I found out that he walks through Central Park alone, and goes to restaurants and has a girlfriend, and doesn’t get lost. He said he takes the subway and walks around his neighborhood. Yet speaking with him it is evident that something is off. If I were to graph myself in terms of progression, I’m sort of in between Scott and Maureen. They are my age so it’s younger onset. I know so much about my past, and can be so descriptive. She is not able to describe much because she can’t find the words, forgets the words for the type of work she did, and doesn’t know the name of the borough she lives in. Scott is functioning pretty normally, but has word finding issues. He was accompanied by the companion who I met before, who is much more of a companion than a home health aide. Ira and his wife Sandy who has Alz were there. The well off older gentleman whose name I can’t remember was with a very well dressed loquacious woman who may be his wife, and what appeared to be his daughter. He gestured warmly putting his head on her shoulder, and I saw that this made her look uncomfortable. I observe. It’s what I do now. Mindful Connections is a great place to observe, both the people with dementia and the art.

The docents focused on and talked about Phadmasambava, who is also known as Guru Rinpoche. He was an Indian tantric master who played a major role in bringing Vajrayana Buddhism to Tibet in the eighth century. In this sculpture of him, he wears a lotus hat symbolic of his miraculous lotus birth, adorned with symbols of the sun and moon, tipped with a vultures feather, kings robe, monk’s shawl and jeweled ornaments.

I enjoy seeing looking at the art and talking about it, but I’m not the art connoisseur I used to be. I’m there to observe and interact with the people as much as look and talk about the art. The art is what brings us together.

 

Suddenly Mad- Museum of my mind - Phadmasambava Buddha Inbox xThursday, April 19, 2018- I didn’t make it to The Alzheimer’s Association support group. When the alarm rang I couldn’t get up. I felt weak and sick, My brain felt mashed up. I couldn’t do it. I called the social worker who runs the group and emailed her that I didn’t feel well. She wrote back “no worries”. I felt bad about it. That I couldn’t get up and go.

*****

I have the commonest of dementia’s, Alzheimer’s. I used to think I was brilliant. My eyes sparkled and had life in them. Now I can’t think straight, and my eyes look deadened. It shows in my eyes. I tried to capture this in the drawing. My friend and part time aide, Keith, said the drawing looks much older than me. I try to draw what I feel.

*****

How to push when the simplest of things are so hard to do now? Each sentence needs to be corrected now. Words have to be pushed out. My body lumbers. Each thought zigzags between what is now, what is yesterday, what is last week, what is tomorrow.

 

Generations

Suddenly Mad- Hierarchy of generationsMy husband took me to The Alzheimer’s Association support group yesterday. Bless him! My legs felt wobbly walking to the bus but I plowed on. Heaviness and the feeling of a lack of an axis to balance me, is how I can describe it. He steadies me now when we walk together. His arm holding mine, his quick hand  pulling me back as I lean into the street to cross. He is becoming more protective. A comfort to me, though the thing he cannot save me from is happening between my ears. Missing my independence and accepting his support, which he gives more freely now.

This was the third time I met with the group. We are each as different as snowflakes, as all  people are. Everyone is different from each other whether they have dementia or are “normal”. Who are these people that are suddenly in my life? How did they get here? How do we support each other? Like spectators of each others oddities, we shared and went around in a circle talking about what we still can do. Most are in their 80’s or late 70’s. Only one is close to my age, and practices acceptance with the tenets of the 12 step step program he learned as a former member of Alcoholics Anonymous, and still retains. I look to him with admiration for offering that. The Serenity Prayer (Reinhold Niebuhr)

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

I am the youngest in the group. I know in younger folks the disease moves faster. None of them is experiencing the changes I have been. They each have their own “peckle” (package). I share my stories about what I’m experiencing, careful not to dominate, eliciting the stories of the others.

Political correctness in the world of Alzheimer’s and dementia is that acceptance of having and living with this is what’s most important. What’s the point of complaining? But I see the other person’s snapshot perception of me is not the movie I’m living. For me there is physical decline as well as cognitive decline and it’s not been the slow decline of aging. I fell off of a proverbial cliff. Accept this? Relax into it? Ha! Yet it’s mandated in life that to carry on is what we must do. No matter what, as long as we can.

*****

After last week’s Alzheimer’s Association support meeting – I felt like I nailed it, and felt optimistic. A good meeting. A good feeling. I gave myself a pat on the back. Not too much anxiety traveling there, complete orientation to time and place. Able to walk 3 miles. Then wham! My husband and I had walked across town to the Port Authority. We went up the escalator to the second floor where the gate for our bus is located. I reached into my purse to take out the tickets from my wallet. I was holding the tickets in my right hand, and the wallet in my left. Suddenly there was what looked like a blue string or blue line connecting my wallet and the tickets. Then it disappeared. I looked down at the tiles on the ground, and saw there were lines between tiles. Apparently a line from the tiles had jumped up and become a virtual blue string that appeared and then disappeared. The only other time something like this happened was over a year ago. I was laying in bed, and looked to my left, and there was a sheath of pink red light, a ceiling to floor curtain of colored light. I reached out to touch it and it disappeared. I’ve been told that people with neurodegenerative diseases hallucinate, and sometimes see people and animals, creatures that aren’t really there. Would I prefer that to sudden visuospatial depth of field distortions? Dancing bunnies in the middle of my living room. Talking zebras? A singing pink elephant on my ceiling perhaps?  I had better watch out what I wish for (no snakes please).

*****

My friend Dallas is a devout Christian who is really funny. He talks to G-d (don’t we all ?) and in his last blog post, a letter to G-d, he says he thinks death is underrated. I think that’s a funny thing to say. He’s joyful, prayerful, thankful, no matter what, and waiting on G-d. Not the least bit antagonized by it. I love that about this man. Wish he were a rabbi!

Speaking of rabbis. I had a visitor who is transitioning from her role as a chaplain to becoming the rabbi of a congregation in the neighboring city next to mine. She visited me twice before over the past year. I hadn’t heard from her and accepted that she was gone from my life. Then she called me out of the blue to make an appointment with me. The reason for her visit? I found out it was to tell me that she would never visit me again. Why? Because she was transitioning from the role of chaplain to being a rabbi. At the time I was really hurt. Why make an appointment with me to tell me that she would never visit me again? Couldn’t she have broken up with me over the phone? (Obviously I am not dying fast enough and this woman is busy).

When I first met her, I asked her to read my blog. She gave me her email address and I sent it to her. The next time I saw her, I asked her if she had read it. She said she receives so many emails, she could not possibly open mine and read my blog. I guess people with who have Alzheimer’s are not supposed to ask for a rabbi/chaplain who visits them to read their blog. But my dear friend who is the chief rabbi to Poland reads my blog, so I figured she would too. Then she told me that she would never see me again. I thought of my friend Lon, who told me some people are acting out the role of their job – rabbi, priest, chaplain, and a rare few do it because it is their calling. My friend in Poland, the rabbi, tells me he learns from me. This woman, a rabbi and a chaplain is too busy to learn from me. Not too busy to visit and hurt my feelings though. Odd how people’s roles and jobs do not fit who they really are. I am learning.

Suddenly Mad- Hierarchy of generations- Mimi close up

What’s important now? My daughter looked at me crazily when I snapped the photo. Her eyes were as wide as marbles. My daughter was 23 when this began. She had just begun to launch herself. She started a career. Moved in with her boyfriend. Spread her wings. She does not want to be a caregiver for her mama who has Alzheimer’s. I see-sawed between being needy and being overly concerned about her and how she could weather the loss of me as I change. She is going to be okay.

I hope. I worry about her, as a mother does. Is she taking care of herself, now that I can’t be the mom who takes care of her? This disease is a curse that has robbed our happiness as a mom and daughter. When she is with me now, our roles are reversed, and she acts like the mom. She prepares the food, calms me down, does the research, brings CBD oil. I love her and hate this disease.

Suddenly Mad- Hierachy of generations- Soren close upMy son is now 36 years old. A lawyer married to a lawyer, and father of a toddler, owner of a house, that is a castle. Member of a family that has extended family that helps them raise their daughter. He is fully launched, unlike my daughter who was far too young to have this happen to her mom and her family. I see his sadness, and the loss and dismay  he has experienced in seeing symptoms of this illness in me, and what it’s done to our family. Suddenly Mad- Hierarchy of generations- Ellie's face close upMy granddaughter. The next generation. The Alzheimer’s began when she was in her mother’s womb. Now she is two and half, a bubbly effervescent bundle who is smart and strong. Blessed with a family that dotes on her, she beams with confidence. I used to envision myself introducing her to art museums, and fashion and culture. I so wanted to be that grandma. She will be untouched by this. Suddenly Mad- Hierarchy of generations - Wayne's face close upMy husband, my soul mate, my caregiver. My back up brain. Weary. Lonely, very sad and tired. Me, his wife of forty one years, and mother of his children, a woman that was his equal partner. Now I am in need of his help and support for the simplest things. He works full time and is far too young to have this happen to him and to us. It has been robbing him too of all the dreams we had for a happy future, a time that we were going to continue to enjoy together. Our partnership. A normal life. Suddenly Mad- Hierarchy of generations - half Minna: half Ellie close upWho are those people looking at my family that are depicted in my drawing? They’re in shadow witnessing the story unfold. Souls, I think. The watchers, spirit guides perhaps. Witnesses. I am fading from view. Eclipsed. My family members are drawn as large heads aggregated into a kind of land form, a kind of mountain. The figures watch. There are the watchers and the experiencers. I think we do this in our lives and it is our journey that we watch. There is a part of us that does not feel the pain. A part that is more evolved than the drama. An inner being that transcends. Witnesses.

*****

To maintain a positive attitude is hard for me, but I try. How? I try every day to maintain some kid of a routine. Get up, get dressed, play cognitive games, watch how the scores have declined and then brain train until they improve. Force my brain and body to work. Look for the ways to find peace in myself. Humor, friendship and connection. Appreciating the love that is still there. Giving myself the liberty to use this forum to express myself. Telling people I love, that I love them. Today a call from an old friend. He indulged me with listening to my story, going on about the changes and challenges. He’s been going through his own illness, but listened. I am grateful for his call.

There are things I notice now that I never saw before. Noticing things that I didn’t take the time to notice before. My husband and I walked east on 41st Street and then sat for a moment on chairs in the park, and looked around. I asked him about a building with an indented triangle in it’s corner. He always looked around and has noted the things he saw, that I now see, but I didn’t notice before. He thinks the building’s architect is a Japanese designer. We stopped to look at the daffodils blooming in Bryant park and proceeded up 42nd Street in the direction of the Chrysler building.  Suddenly Mad- on route to The Alzheimer_s Assn view of Chrysler building from the taxi #3

Suddenly Mad- Hierarchy of generations' building with an unusual design I never noticed beforeSuddenly Mad- Hierarchy of generations - enroute to Alzheimer's Assn -things i notice now daffodils

Fate and Acceptance

Suddenly Mad- Dylan and me

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.

All the people we used to know
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
I see in these photographs from age fourteen and age sixteen, that I started to turn inward at sixteen. By then my sister was married and my parents had given up on me, although my mother would appear at my high school to complain about me to the principal, and I would be aghast to see her there. In the black and white photograph with my waist length brown “hippie” hair, I see that I am already wandering out to that place that ultimately brought me here.

 

Suddenly Mad- Detail #2

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/

*****

Lessons

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

 

Suddenly Mad- Alzheimer's Assn Support Group meetingThis 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.

Suddenly Mad- meeting with others at The Alzheimer_s AssnSuddenly Mad- Bryant Park - return home from the Alzheimer_s support groupSuddenly Mad- a graffitied subway car relic inside a windowSuddenly Mad- MacDonalds on 42nd StreetSuddenly Mad- Pharrell Williams in waxI 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.

Suddenly Mad- waiting for the bus at Port Authority

Forty years

Suddenly Mad- photo of me at age 14

1968.

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.

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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?

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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.

Suddenly Mad- on route to The Alzheimer_s Assn on 42nd Street #1 Inbox x

Suddenly Mad- On route to The Alzheimer_s Assn in a taxi #2

Suddenly Mad- on route to The Alzheimer_s Assn view of Chrysler building from the taxi #3The magnificent Chrysler building – going East on 42nd Street

Suddenly Mad- Alzheimer_s Assn door sign

Suddenly Mad- inside the waiting area Alzheimer_s Assn

Suddenly Mad- inside the waiting area of the Alzheimer_s Assn in New York (desk area)

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.

Suddenly Mad- Self portrait with ellie and a reclining buddha

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.

Suddenly Mad- photo of me at age 14

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.