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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

 

MUTATIONS A-GO-GO

Suddenly Mad- Mutations A-Go-Go

I wrote this yesterday, Wednesday, March 7, 2018. That much I know. But I can’t seem to think in a linear manner anymore, at least not very well. The damage to my brain continues, and I write out of order, think out of order, the steps of doing things are often out of order, like getting dressed and what article of clothing to put on first.

I start writing about an idea and then lose that thought, and then I forget what I was going to say, and begin again looking for a new way to start. I really can’t think straight. The psychiatrist Dr. R., wanted to put me the antipsychotic Risperdol, and when I didn’t want to take that, he tried to get me to take Lamictal, then Depakote. I don’t want to be medicated, and I believe psychiatric medication disrupted my synapses in the first place, and has a lot to do with my spiraling into younger onset Alz, rather than later in my life. His reasoning was that I don’t think straight. He was right, but it isn’t because I am Bipolar, and those medications are supposed to help Bipolar people have more stable moods. He said my thinking is crooked. He was right. He said that I have flight of ideas and loosening of association. I picture ideas with birds wings, and loose change in a pocket. I am literal. I am looking for the concrete understanding, a picture of what this means.

My non linear thinking can’t be corrected. I can be medicated to not be ruffled by it as much. So that it causes less anxiety, I suppose. I can be sedated, I suspect. But there is no going back to who I was.

There is a test that the neuropsychologists administer to assess how one’s brain follows a pattern and connects things, called Trail Making A and B, that is used in assessing dementia. It measures how quickly the person can plan steps and follow a sequence. Twenty four circles are randomly placed on a page, with numbers and letters. The idea is to connect the number to the letter, until the sequence is completed – Number 1 to the letter A, then number 2 to the letter B, then number 3 to the letter C, and so forth.  The results of that test showed I have considerable difficulty with processing and speed- how quickly I think. How quickly I connect the dots. This leads to executive dysfunction which leads to significant limitations in the daily routines, such as impact on functionality, i.e., in the performance of activities of daily living, which obviously reduces autonomy and quality of life.

For me, for example this results in not knowing what to do first, second, third. I end up with sometimes only washing a few dishes if the sink is full, taking out a container of juice to pour some for myself – but there is no cup there to pour it into, trying to scramble some eggs in a pan and seeing that the spatula or plate is missing, trying to complete a typed sentence and going back and reading it and seeing that letters are missing in words. Or parts of the word get left out, and that is very frustrating, or letters are switched and out of order.

In the brain signals that form memories and thoughts move through an individual nerve cell as a tiny electrical charge. Nerve cells connect to one another at synapses. When a charge reaches a synapse, it may trigger release of tiny bursts of chemicals called neurotransmitters. The neurotransmitters travel across the synapse, carrying signals to other cells. Scientists have identified dozens of neurotransmitters.

Alzheimer’s disease disrupts both the way electrical charges travel within cells and the activity of neurotransmitters.

So my thoughts are disrupted. I see that they are incomplete. The science explains why.

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Living with this is what causes frustration and anxiety. Simple actions require longer to complete. I see that things with wires, like the earbuds I use to listen to music or a Zoom chat privately on my laptop, get tangled, and untangling these takes concentration and patience and fine motor dexterity.

Completing a drawing, photographing it, sending it to my email, uploading it to my desktop, uploading the image into the post- these are steps that require remembering and implementing a sequence. Every time I am able to do it is a triumph of independence for me. It’s the small things like this that matter to me now.

Suddenly Mad- Mutations A-Go-Go detail of drawing

The Silly Drawing: I call it Mutations A-Go-Go, and used that as the title for this post. The characters are supposed to represent people with dementia I have befriended in the dementia cafes online. I was also thinking about inherited mutations in DNA as the cause of Alzheimer’s and other forms of dementia like FTD (Fronto Temperol degeneration where 40% of cases are caused by inherited gene mutations), and sporadic onset, where it’s unclear what in addition to environmental factors combine to cause it. I was trying to illustrate the fragmentation I feel and experience (not too successfully, but I kind of liked the feeling of playful lunacy in it ). The A-Go-Go suffix takes the torment out of the word mutations. I’m playing with things now, words and images. Trying to be less uptight. I can play with words and combine them in the way a Surrealist like the French surrealist André Breton did. He discovered the singular phrase that became foundational to the surrealist doctrine of objective chance: “as beautiful as the chance encounter of a sewing machine and an umbrella on an operating table.”

This metaphor captures one of the most important principles of Surrealist aesthetic: the enforced juxtaposition of two completely alien realities that challenges an observer’s preconditioned perception of reality. I’m an Alzheimer’s Surrealist.

Chance: I’m now more curious about what comes out on the page without a clear plan. I read that caregivers for their Alzheimer’s loved ones like to provide activities and buy coloring books for them. Since I was, and still am a creative person, and don’t yet accept the personification of being a child in a late middle age body, I am not interested in someone else’s lines given to me to color in in a coloring book to keep me occupied. In a sense this drawing is a page from my own coloring book. When I made this drawing, I saw that I was approaching the page without any ideas. I was distressed about that, initially. But I stuck with it, remembering that an artist’s studio practice (when one is normal working artist) is to go into the studio and have the attitude that something will be created and it will lead to something.

Suddenly Mad- Mutations A-Go Go - yellow girl detail

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Can I curse here? My sleep is fucked!

Last night I was up until 5 am. Why? It’s daunting to not be tired enough to start getting to bed, but the process of going to sleep, requires first that I write the list for what I want to accomplish and any appointment reminders. If I don’t do the list then I will forget what I want to do, and what to do. That’s how impaired my memory is. Not that I get everything done on the list, but I do get some of it done. Writing it, however, and going through the bedtime routine is actually very very hard. Getting myself to bed is work! I found myself laying on the couch with my shoes on. I felt like I wasn’t able to move. My brain was too alert to sleep, so turned on the TV.

I ended up watching two documentaries about people who had younger onset Alzheimer’s who both died after around 8 years which is the average with optimum care.

One of these films was The Genius of Marian https://geniusofmarian.com/  I’ve watched it before, but this time I saw new things and experienced it anew. It’s an intimate, poetic documentary made by White’s son, Banker White, a filmmaker, about Pam White and her family as they all struggle to deal with Pam’s Alzheimer’s disease. As the film opens, Pam is in the midst of writing a book, The Genius of Marian, as a tribute to her mother, painter Marian Williams Steele, who died of later onset Alzheimer’s. But then she herself is diagnosed with the illness and the book will never be finished. We see Pam progress. By the end of the film she has come to terms with her condition (something that I think I am in the process of doing, as I am coming to treasure the love of my family and the friends who are still a part of my life, and the very full life I have led). White remarks, in a stunning moment of lucidity — not unusual in people who have Alzheimer’s — “It doesn’t change anything.”

Co-produced by Banker’s wife, Anna Fitch, she says about the film, “This is a reminder that we don’t often talk about the really important things until we’re in the middle of a tragedy, but you don’t have to wait. Alzheimer’s gives you the unique gift of time with someone you know you are going to lose. I hope our film will inspire people to connect on an intimate level with everyone they love”.

I watched this on Amazon Prime for free. I hope you will find a way to watch it.

 

 

The other film was the story of Diane Friel McGowen,  Forget Me Never.

Above is the whole film on Youtube, if you can stream it. It is worth watching to learn about McGowen’s story as the first younger onset woman who formed support groups for people in the early stages.

McGowan  wrote Living In The Labyrinth: Personal Journey Through the Maze of Alzheimer’s, the story of how she found the strength and the courage to cope with this devastating disease that has over afflicted five million Americans. She was only forty-five when she first began to struggle with the memory lapses and disorientation that signal the onset.

Somewhere there is that ever-present reminder list of what I am supposed to do today. But I cannot find it. I attempt to do the laundry and find myself outside, in my backyard, holding soiled clothes. How did I get here? How do I get back?”

“The Alzheimer’s patient asks nothing more than a hand to hold, a heart to care, and a mind to think for them when they cannot; someone to protect them as they travel through the dangerous twists and turns of the labyrinth.”

****

It’s been a brutal day outside, and I’ve been warm and cozy inside with my husband all day. A Nor’easter hit this area, and it’s winding down now. The snow is blanketing the street.

Suddenly Mad- for Mutations A Go-Go - outside my window - Noreaster snow

Grateful for the terrible weather. For having another day together. For electricity and heat. No hair on fire. No insanity. A peaceful day.

Suddenly Mad- Noreaster outside my window

 

The Alzheimer’s tourist/ The Alzheimer’s patient

Suddenly Mad- Feb 25, 2018, the sleeping beast within

The Alzheimer’s Tourist

I’m an Alzheimer’s tourist visiting the land of Alzheimer’s and dementia.

Creativity is not damaged in Alzheimer’s, and since I made art and drew for so many years, it’s a part of my procedural memory.

The drawing was inspired by a woman who is a patient of my current therapist. It’s supposed to be a composite of her face and body, superimposed on an ancient street. The other elements, fire from the windows, the drawing of the Congolese Nkisi Nkondi sculpture, form a kind of prayer for the preservation of my soul. This one is Surrealist , although quite tame compared to Dali, Magritte and Ernst. Surrealism releases the creative potential of my unconscious mind, by the irrational juxtaposition of images.

Suddenly Mad- Nkisi Nkondi sculpture from Nigeria

The wooden figure is a Nkisi Nkondi (a power figure is a magical charm carved in the likeness of human being, meant to highlight its function in human affairs). I bought it in Paris from a Nigerian man in a market, who ran after me and accepted my lower offer, when I could not materialize the 300 Euros he wanted for the trade.

In ancient Congolese rituals, nkisi nkondi can act as an oath taking image which is used to resolve verbal disputes or lawsuits (mambu) as well as an avenger (the term nkondi means ‘hunter’) or guardian if sorcery or any form of evil has been committed. These minkisi are wooden figures representing a human or animal, carved under the divine authority and in consultation with an nganga or spiritual specialist, who activates these figures through chants, prayers and the preparation of sacred substances which are aimed at ‘curing’ physical, social or spiritual ailments.

In todays world such a rituals may be purely superstitious, but someone carved this sculpture with great intent, and to me that soul is embodied in the figure.

Art is alchemy. Both alchemists and artists are fascinated by the mystery of a transformation which to some extent is guided and shaped by themselves.

 

Making art allows my spirit to take flight, instead of feeling like a dybbuk that has taken hold of me and changed me into a person I am not. https://en.wikipedia.org/wiki/Dybbuk

Actually the woman who inspired the drawing is a 300+ pound woman who is homeless and is also my therapist’s patient. She was sleeping in her waiting room sprawled out over 2 chairs. I am always looking for inspiration, I snapped her picture. I admit I made her thinner and more graceful. The rest is my imagination. Not a hallucination.

Suddenly Mad- Feb 25, 2018 - the primordial beast within - detail of the body

I saw a therapist for 9 years, from 2006-2015. The relationship ended in June 2016. After everything really became too much for me. At the time my entire life fell apart. After I began to lose my mind, as a result of being put on psychiatric medications and Klonopin by a psychiatrist who did not know what he was doing.

My long time therapist, Jon, was an Israeli, and I had grown quite attached to him. I thought he truly cared about me. He was younger than me, but a kind of surrogate parent. The loss of seeing him was devastating to me, and still is. His office is in Manhattan, and I sensed the impending loss of my independence when he refused to see me again.  At the time, I did not know I had Alzheimer’s disease, of course, but I knew that whatever changes were happening to me were an insanity in the making. I just thought I was crazy. I didn’t know I had a brain disease. I had begun stuttering and became hyper-verbal while taking the Klonopin, and tapering from it. I had lost my previously normal sleep cycle. I was having mini comas as a result of getting 0-3 hours of broken sleep a night. I’d be sitting at my computer, and my head would fall to my chin, out cold for a few seconds at a time. I did not know my behaviors and mood swings were neuropsychiatric, and a result of what was happening to my brain. It was terrifying. I tried to function as normally as possible, but ultimately even that became impossible.

Jon had seen me go into and recover from many relapses of depression in which medications prescribed by a psychiatrist pulled me through, with his weekly sessions as an adjunct. Then the medications stopped working. That was five years ago. I then began a vigorous exercise program of weight training. Within months, I felt stronger than I had in many years. I thought I had beat the depressions, and before I suddenly plummeted, 2 years and 9 months ago, I was doing fine. I was happy and productive, teaching, writing scripts, directing a play, traveling. Then it all suddenly unraveled. Invasive dental work, was followed by intense anxiety, scattered thinking and then a depression so dark, I could barely move.

I started to miss appointments with Jon. I lost my energy and could not push myself. Jon recommended I see another psychiatrist, who I made an appointment with and went to see that fateful day in November 2015, when he prescribed medications that changed my brain chemistry and according to neurologist #1, unmasked the disease.

There was never a suggestion from the psychiatrist I did end up seeing, that the depressions and anxiety were neurological, until I saw the first neurologist at Columbia Presbyterian, who said that the depressions I kept relapsing from were not primary depression. My depressions were not a product of neurosis, not a mood disorder- they were manifestations of brain tissue loss. Cognitive dysfunction in major depression and Alzheimer’s disease is associated with hippocampal-prefrontal dyconnectivity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5476659/ 

Neuropsychiatric symptoms in Alzheimer disease (AD) and other types of dementia are extremely common and often much more troubling than amnestic symptoms. Now I learn that they are particularly common in younger onset Alz. I suspect the same happens in forms of Fronto Temperal dementia and Lewy bodies disease. Initially, cognitive and amnestic symptoms were not my presenting symptoms. What was changing was my experience of reality colored by intensely changing moods. Yes I know it sounds like Bipolar disorder. That’s what the prescribing psychiatrist thought. Turns out it’s not (although a geriatric psychiatrist has told me I have loosening of association and flight of ideas, and that my thinking is crooked and wanted to prescribe medications for bipolar disorder).

I see a woman therapist now, who is in her fifties. Lovely woman, but she’s not someone I would have chosen to be my therapist when I was well. Yet here she is my therapist on this last leg of my spiritual journey. She’s a Christian pastor, has a PhD in clinical psychology and a masters in social work. Ironic that I end up with a Christian pastor for a therapist. Me- the BIG Jew (my husband used to call me). Culturally she is so very far from my life’s experience, but no matter, she’s experienced and helps me deal with the tragedy of my circumstances, puts up with my erratic personality, listens to my rants, and takes my insurance. My daughter who has been looking out for me and trying her very best to help me, found her for me. The location is good, only 4 and 1/2 blocks from my house. For a woman who is starting to get lost when I venture far from my home, this is a very good fit.

Therapy for a person with Alzheimer’s is mainly behavioral. It teaches me how to better deal with my own clingy behavior, which drives my husband nuts. How to temper my temper, which gets out of hand if something is moved, or if we are low on paper towels, and or something nonsensical triggers me, and I fly off the handle. I have lost my filter, and said and done things I regret, for instance when I screamed in the middle of the night when a cabinet in which I kept a small jar of Vaseline, I thought was “there” wasn’t there, because my husband had moved it. Therapy with this therapist/ pastor helps me contain myself better. I certainly don’t want to end up in a psychiatric hospital because I can’t find the Vaseline. She helps me be more mindful, which often means simply don’t react, and find ways to redirect myself.

I’m emerging from the period of grief and anger. Sure my life fits into a virtual shoebox. So small. so confused. What do I need now? Keep it simple. 2 meals a day, my supplements, some exercise, a very reduced wardrobe, the love of my children, the care of my husband/caregiver, playing with my adorable granddaughter when I get to see her, my iPhone and a computer connected to a WiFi network, the occasional Netflix flick, my sketchbooks and art supplies. A comfy bed, my jammies, a shower stall, my bathroom. Cookies are important. Zoom chats with Jackie, DIA, Dementia Mentors cafe and my dedicated and much more stable than me dementia mentor. It’s too late for me to create a bucket list of all the things I want to do before I’m gone. Now less is more, and simply going for a walk, and moving my body is a vacation.

I am witnessing the sometimes slow, some days rapid deterioration of my mind and body, and trying my damnedest to document it while I can, through drawing and writing. That is my work now. Having the energy and fortitude to keep going.

The disease wants you dead, the new home health said to me. It wants you to stay in the bed. I am in a wrestling ring with this monster. One day at a time. Often one minute at a time. Margery says I am stubborn, and I am a fighter, and maybe will be this way until the end. She on the other hand, practices acceptance. CBD oil and Purple Kush help her do that. She also swims 4X a week. I’m so envious of that. I can’t even stand to go out in the rain.

Exercise – I was pumping 150 lbs of weight in 2014. Now I am up to 6 minutes on the Nordic track bicycle. Alzheimer’s will do that to some people. I’d better start using it for more than 6 minutes, lest my husband decide to sell it.

I’ve told my current therapist that the therapy is getting there, getting ready and out the door and on time to her office. Speaking with her, and listening to her advise is an added bonus. It’s having the motivation to get up and get it together and go. I set alarms on my phone to be aware of the time I need to be dressed, teeth brushed, eat breakfast and look presentable. I make sure I have my keys and phone in my bag, and boldly am out the door. I say boldly because in place of the confident person I was, I have become so insecure and anxious, and my default is hiding in my house playing Lumosity games on my iPhone. Being intrepid, I walk those 4 1/2 blocks. Sometimes after a session I walk up the big hill beyond the 4 1/2 blocks, and snap a photograph of the New York skyline beyond the Hudson River that separates my city from Manhattan.Suddenly Mad- Skyline from Stevens hill Wow.  Imagine that. Walking a few streets requires fortitude now. My feelings of sadness, fear, stress, confusion and anxiety, are discussed with my therapist.  I’ve been seeing her for over a year- through the period when I was struggling to keep working. She has held my hand through the losses. She’s been privy to the parade of assistants and home health aides who have come and gone. We talk about my husband and how to best manage my behaviors around him. How to be mindful, despite the fact that I feel insane some of the time, and he has a hard time with my clingy and often times demanding behavior. What a contradiction, being mindful when one is losing their mind.

The act of pushing myself to get dressed and ready to walk up the street, and get there for a session, is as therapeutic as the sessions. I say this because motivation and mobility have been huge symptoms for me. Now just going outside of my house alone is a challenge. Just getting out of bed and orienting myself through the first part of the day, is a challenge. Balancing my body as I walk is becoming harder. I force myself to get up and deal with the confusion, sometimes seeing double, not knowing what to do, forgetting the order of the routine. Then  I remember. Then forget. Then remember. Somehow I get it right.

Anyway, this is all the tedious typical stuff you are likely very tired of reading if you’ve been reading my posts. How I push and manage to keep going on in what appears to be a pointless existence is not novel reading any longer. A friend who I met over Zoom chats, and says he was diagnosed with Vascular dementia, told me that he does not read my blog. Too depressing he says. He is not progressing in Alzheimer’s, I tell myself. He tells jokes. He drives. He drove from New Jersey to Maine. He does not understand. I hope for his sake that he never will understand.

The homeless woman who is also my therapist’s patient, and inspired the drawing was sleeping in the tiny waiting room. Her abundant body took up almost 1/4 of the room. I’m the Alzheimer’s tourist who looks for inspiration and snaps photos of things I want to remember. So I surreptitiously snapped her picture. I confess.

I watched her sleep, jealously. I hardly sleep. 4-5 hours a night if I am lucky.  I spotted her months ago  homeless woman at the Social Security office, along with other people I had previously assumed were homeless, as I would often see them on the streets with their cups, hanging out on benches allocated for people waiting for the bus. I never thought to say “there but for the grace of G-d go I”. I used to think they were lazy. Now here I am receiving Social Security Disability compassionate care granted for Early Onset Alzheimer’s and sharing a therapist with this woman who really has the face of angel when she’s sleeping. I now realize these people lost control over their lives. I lost control over my life too. Different reasons, but I never imagined I would ever have anything in common with this woman. I do now. Irony. Does G-d have a sense of humor? He/She or I will call it my higher power, is teaching me humility.

Imagination and humility. While I would wager that this woman has not thought about me, I wonder about her, and how she became who she is, and I draw her sleeping face.

 

The Alzheimer’s Patient

  1. My neurologist told me yesterday, he would schedule another FDG Pet scan. That means another radioactive tracer injected, sitting perfectly still for a half hour in a darkened cubicle and then placing my body on a bed that moves into the scanner tube, while it takes pictures of my brain.  Should I pass on that? What good will it do?

Suddenly Mad- hallway Pearl Barlow Feb 26, 2018

2. The Institute for Rehabiltation. Help for people who have had strokes and may be able to benefit from rehabilitation. I am told after six hours of neuropsychological testing, that my attention and concentration have not declined in the past year, parts of memory have improved, but my ability to learn and remember a list of words is lower than last year, visual memory is in the average range but my visual spatial skills are quite good, processing is significantly slower (how quickly I think), I have an organized approach to planning and organization as demonstrated in drawing a clock, I have poor abstract thinking (I am literal she said), my mental flexibility is not good (she said she understood how this manifests in my day to day life), problem solving -not as good as expected (understands why I would have problems preparing meals). She said I have losses and it has affected my confidence. She said there is no cognitive remediation at this institute for neuro-degenerative disease, but that she could offer a psychologist who would do 6 sessions of functional memory remediation.

suddenly-mad-rusk-institute-waiting-area.jpg

Suddenly Mad- Rusk Institute hallwaySuddenly Mad- Elevator directorySuddenly Mad- Rusk Institute - my list and how the psychologist marked it and could do nothing for meHomework with the psychologist I was assigned to, was to group items on my list. Clearly she was not intent on helping me. She wrote the words sleep, regularity of schedule, consistency for (looks like an arrow), anx (think she meant to write anxiety) and confusion. My husband canceled the rest of the appointments, after she said she was only meeting with me because she was doing a favor for her colleague, and that she could not help me. She said the best thing I can do is make legal and practical plans for my progression and well, you know what comes after that.

SO in the final analysis- I’d rather be an Alzheimer’s tourist than an Alzheimer’s patient.

I will check in with my dementia buddies on Zoom chats, who wisely have told me that the “real” world doesn’t know what to do with us. I’ll keep seeing my therapist, try and increase my exercise, take photos for inspiration, keep making drawings, and write these “hello, I love you, I’m still here…will you please reply to my blog” salutations, and keep my fingers crossed that I am still able to remember how to spell or use spell check. If I can’t sleep, I’ll substitute drawing a sleeping woman with fire emerging from the windows of her heart,  as an antidote.

Suddenly Mad- Feb 25, 2018, detail face from the sleeeping beast within

 

Reflections

Suddenly Mad- Self portrait with others (Jackie Pinkowitz, Joseph Pratt, Mimi, soren and Elina, Ellie, Keith and Sherine)

The drawing is a self portrait, surrounded by people, images I’ve drawn of some of the people in my life now. The physical act of drawing consumes me, trying to make the marks conform to what I want them to do, but unable to deftly apply my skills as I once did. I awkwardly sharpen the colored pencils with a blade. They keep breaking when I use the sharpener. The beautiful paper I used to use in creating a portfolio, is now replaced by simple Japanese sketchbooks. I don’t make studies any longer, as I used to in preparation for a series with a theme. I simply start and proceed. What comes out is the pathos, mirroring back my emotional state. In this drawing are some rudimentary images of my children, my granddaughter, my kind friend Jackie, an erudite outspoken man I met (whose wife has probable Alzheimer’s) named Joseph. I’ve drawn the home health aides employed to keep me company, keep me mobile and help me complete tasks. There is so much apathy and I have to push myself hard to write and draw and stick with it.

My paid companions are a dreaded need for a woman my age. Only three years ago, I was completely independent and functioning normally.  How strange my life is now. How merciless is this disease, robbing me of memory and thoughts. My self.

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In my attempt to fight this horrible disease, I document the journey. I use words and images. What else is there left but to document the journey?  My unfiltered emotions. The disorientation. The fear. The lack of motivation. The confusion, and slow but predictable loss over bodily functions beginning. Myoclonus- twitching of muscles in parts of my body. Pushing my broken self forward. Out of the bed, into the robe, lurching to put on the slipper socks, down the spiral stairs, stiff legged and slow, urging myself to shower, dress, eat the berries, the yogurt. Scrambled eggs with toast this afternoon, offered to me by my husband, who is my weary caregiver. Forcing myself to eat, when appetite is no longer a reliable signal. It is after 2 pm, and I am finally dressed and eating breakfast and taking the Rivastigmine and baby aspirin. The day is short when one can’t get out of bed until 12pm. Night falls and I am on the computer, or reading. No one calls. My husband withdraws to his bedroom, which was our bedroom. Now it is his room to withdraw to and rest and sleep. I sleep in the adjoining bedroom, unable to get there and through my bedtime ritual until after 1 am and often much later. When I tried months ago to sleep with him, I panicked, because I couldn’t figure out how I would be able to get my robe and my phone and things from the other bedroom, and collect my clothes which were placed on a hanger along with my shoes, in the other room, where I assemble my clothing for the next day. I imagine this makes no sense to you. As I write about it, it makes no sense to me either. Yet the steps of gathering myself and my things to proceed downstairs to get washed and dressed, confused me so much that it sent me into an agitated anxious state.

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Last week, I panicked when I was hungry. It was very late afternoon, and I was on a Zoom chat support group called Dementia Mentors Cafe, with others who have a garden variety of neurological impairments and diagnosis – Lewy bodies, Vascular dementia, mild cognitive impairment not otherwise specified. I am the only one with Alzheimer’s, the commonest of dementias. I muted myself and went to the refrigerator in the other room. I took out the foil covered plate my husband had left for me, with it’s post it note that said Big Lunch. I have gotten into a peculiar habit of leaving myself a place setting with a napkin upon which there is a spoon, a fork and a knife, along with a ceramic cup and small plate. When I took the foil off the plate, there was a half of an acorn squash that had been baked, a portion of prepared quinoia, and a large piece of baked chicken, that my husband had prepared the night before. I panicked because eating the baked acorn squash with it’s green skin, required thought. How to consume it?! I did not know how to eat it! Was I to microwave the plate with the food piled on it, and figure out how to get it into my mouth after, or did I need to scoop out the pulp from the squash with a spoon, cut the chicken in pieces, first? Such a simple decision, and I was confused and shocked.  I wanted to get back on the Zoom chat. I ended up scraping the pulp from the squash with the knife, and cutting up the chicken, making a mess on the plate, and putting the plate in the microwave, taking a fork, and going back to sit in front of the computer where I was muted and the Zoom chat was still going on. I didn’t want to call attention to my panic. I sat muted and chewed and swallowed, feeding myself with the fork. When I was done, I went to wash the dish and fork, and went back to the chat, and shared this story with the others about how I forgot how to eat because I couldn’t figure out which utensil to use. The host of the meeting, said that she had that same morning shaken a protein shake without the top on, and all the ingredients got all over her kitchen. We laughed. I am not the only one losing my mind! __________________________________________________________________________________________

The change in my perception- the way in which people look hyper-real, like cartoon versions of themselves, makes me feel like this is a nightmare I can’t wake up from. This is what insanity looks like and feels like. I tried to contain it and  sat quietly next to my husband, who was driving us to our son’s home yesterday. I know he is tired of my comments and narration. When we got there, I immediately ran to play with my 2 and 1/2 year old granddaughter, who is very smart and very active. She and I are sort of communicating on the same level now. She needs attention and engagement, and so do I. She doesn’t judge me. She calls me grandma. I see that she is doing so many things- make believe, counting, puzzles, and is even able to work a remote control car. Her world is closer to mine now, then that of my son and daughter-in-law, both working lawyers. My daughter-in-law had a grandfather who had Alzheimer’s. He was probably in his late 70’s when he died. She remembers that he would go out and get lost. She told me he became incontinent and her grandmother finally was unable to take care of him, and placed him in a nursing home, where he soon died. She thinks that by the time a person is at that point, they don’t know the difference between being in a facility and being in their own home. I don’t believe that is the case. The person just doesn’t have the ability to protest. They are helpless. They have lost the ability to communicate, but they certainly must experience sadness and feel displaced.

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I have the ability and awareness to discern another’s emotions but can’t always follow a conversation. I make an effort to understand and ask people to repeat what they mean.

My time with my therapist is spent in a good deal of cognitive behavioral training. I’ve read that the caregiver should not argue with their loved ones who have Alzheimer’s. My husband says, Yes, Minna a lot. I know this is meant to get him off the hook, so that he appears to be agreeing and doesn’t have to get angry (of course, I’ve already forgotten what he’s agreeing with). Rather than argue with him, I have turned more inward, keeping silent.

Trying to convey normalcy, while experiencing anything but normalcy. Isolation despite being with others. Awareness of the schism between myself and others, those with dementia and those who are “normal”. I’m isolated in my confusion and slowness. This is my safe zone, where I can write about what this feels like.

My words and my art work do not do enough to convey what is experienced. It would be more evident if you were to watch me typing this, correcting words, as my fingers type out letters and go back and correct, correct, correct. I delete sentences I write into paragraphs, then write others, and delete again. My intentions are one thing, and something else comes out.  Auguste Dieter, the first Alzheimer’s patient said it, I am losing myself.

I say, I’m getting lost in myself.

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I tried to befriend people who have Alzheimer’s during my visits to The Rubin museum for their Mindfulness Connections series for people with dementia. I thought that a woman I met in November, who appeared to be in the early stages (walking, talking, well dressed and groomed), and who is a year older than me, might be able to use email or a cell phone, and would be able to be in contact with me. I asked her if she used a computer and a mobile phone, and found out the first time I met her, that she isn’t able to do that. She said yes she can, but her aide told me, she doesn’t use email or a phone, but she plays with things (whatever that means).  Her home health aide, a Jamaican woman who wears her hair in dozens of thin braids, answers for her, every time I asked a question. I saw them again this past Friday at The Rubin.  I was with Keith, my companion, and this was the second time we’d attended the program together. At the museum entrance, I spotted this woman with her aide. The woman  followed her like a duckling follows a mother duck. Known as imprinting, it is a natural biological phenomenon that occurs in newly-born birds and mammals, allowing them to form a bond with their mother as well as providing them with information about their own identity.

When we sat at the long table set up for participants to gather, I began to converse with the woman, and not with the aide. The aide then answered my questions, that were directed at the woman, inserting herself into our conversation. This woman seemed capable of speaking for herself, although slowly. Answering my questions evidently made her think. She did not fully remember our meeting a few months ago, but indicated that recognized me. I asked her about her children. I learned she has 2 sons. Then the aide abruptly signaled the woman to go outside with her. I asked why she had to intervene in this way, and why can’t we just talk. The aide says she knows better, that she knows what will happen, and she has to remove her and walk outside. How I would have wanted to convey to this aide that this woman may need and welcome her support, but why did she have to substitute her decisions for what this woman may have wanted to do, which was to sit and try and converse. What threat did I pose to this woman, I wonder, in the mind of her aide? Might she be harmed by trying to engage in a conversation? Was my directness, an affront, directing questions and trying to converse with her? A person with dementia is an adult who is struggling to regain their place in the world. Why not allow the person to try and converse and be with others, for heavens sakes?

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I saw Michael, the formerly brilliant lawyer, in his wheelchair. He  is in late stage Alzheimer’s, and a stroke has taken everything from him. I learned about Michael from his aide Jaime, who is no longer taking care of him. He was with a woman, a new aide, and I approached them, and tried to greet Michael. Previously he was alert when I spoke to him and would try to say something, he could be drawn out. Now when this new aide roused him, he was unable to connect at all. The new aide and I concurred that he missed Jaime, and was depressed. Yes, I believe that even in the late stage, a person feels, and has an emotional response to loss. __________________________________________________________________________________________

Two groups were formed and I wisely went with the one that Robert, an energetic junior historian and docent was leading. He took us to see an installation of two film screens. The piece is called KORA, by Arthur Liouo. It was conceived as single channel film, but adapted to two screens in the presentation. The films are seen at staggered points in their duration, allowing viewers to consider the video from two moments in time. A ritual pilgrimage is captured, in which people are walking a path up the mountain, circling Mount Kailash, rising in elevation. This mountain is considered the embodiment of the divine in Buddhism, Hinduism Jainism and Bon. The ritual is believed to cleanse past negativity, ward off misfortune, and accumulate positive spiritual merit. Kora is a Tibetan word for revolution or circumambulation, and refers to the ritual practice of walking around a sacred object or site.

I yearned to be there and walk with those who have the strength to walk and traverse the path up the mountain, lifting themselves into the sublime. As the elevation rises, the landscape and season appear to shift, from verdant green hills to snow-topped peaks, furthering a sense of a place belonging to something beyond the mortal realm.

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Joseph is a man I was seated next to as Robert described the artifacts in a Buddhist shrine we were sitting in front of.

Suddenly Mad- Buddhist shrine

My ears pricked up as Joseph spoke about the objects knowledgeably. Joseph unpacked his wealth of knowledge articulately. He has seen many objects and shrines from Buddhist temples in his travels with his wife (who he says has Alzheimer’s, and was seated next to him). I introduced myself. This time I was less interested in the objects, then I was during previous visits. I wanted to socialize and learn about this man who had traveled the globe, and I found out referred to himself as a 12th century man. In a short time, we were standing by the elevator, separated from the tour, and I listened to him describe the book of Job, and the lessons that Job learned in response to his grievous losses. Job refused to blame G-d for his travails. Job never lost his faith in G-d, even under the most heartbreaking circumstances that tested him to his core. Joseph recounted how Job’s three friends, instead of comforting him, gave him bad advice and even accused him of committing sins so grievous that G-d was punishing him with misery.

Job knew G-d well enough to know that G-d did not work that way; in fact, he had such an intimate, personal relationship with Him that he was able to say, “Though He slay me, yet will I hope in Him; I will surely defend my ways to His face”.

I asked Joseph for his email address so I could send him my blog. The next day he wrote me, saying he was delighted to receive my message. He too felt that we were meant to meet.  Suddenly Mad- Joseph Pratticus detail

He wrote the following –

I have read enough to realize that you are penning what will be recognized as one of the great literary works of the West. It is not just a blog, but a systematic description of what it means to be truly human being written by a gifted and remarkably articulate person who is systematically and cruelly having her humanity stripped away from her by a mindless neurological malady. I am reminded of Plato calmly describing the effects of the hemlock that he was forced to drink as a punishment by ignorant fools who did not appreciate his greatness. Although his death was approaching, he nevertheless made every use of the experience for the benefit of his disciples. You must continue to struggle and to fight the effects of this dread affliction even as it wins battle after battle. Your struggle is not for naught. You are teaching all of us in your weakness and confusion, your anger and uncertainty what it is about all of us that makes humans so great. Please do not give up the struggle and do not stop your blog. Humanity would be infinitely poorer for it if you did. Maybe this is the script for your greatest movie, the one someone will make about you after you have lost your last battle but  won the war for all of us!
While it’s obvious that I am no literary genius, and never have been, I write to share with others what it is for me to experience a changed self.  I recall the salutation always used by my email friend, Margery, who was diagnosed five years ago, Love and Courage. Joseph was trying to imbue me with courage. I wrote it on a post it note and stuck it to my mirror. Suddenly Mad- self portrait close up

Child of the Sixties: Fragments, Fears, Memories

Suddenly Mad- Sgt. Pepper's Lonley Hearts Club Band - The Beatles album cover

Sgt. Pepper’s Lonely Hearts Club Band; album cover by Jan Haworth and Peter Blake

 I was born a little too late to be mesmerized by Elvis, the hip swinging King of Rock and Roll, who my older sister and her friends swooned over. I knew he made rock ‘n’ roll the international language of pop. I took note of the boys my sister hung out with on our corner, who combed their hair like him, and wore clothes that emulated his coolness, as they gyrated to his music on transister radios. But I didn’t “get” him. “I Aint Nothin’ but a Hound Dog” meant nothin’ to me.

You ain’t nothing but a hound dog
Been snoopin’ round my door
You can wag your tail
But I ain’t gonna feed you no more.

I screamed just like thousands of girls did when the four mop heads, known as The Beatles sang, I Wanna Hold Your Hand on The Ed Sullivan Show on February 9, 1964 (fifty-four years ago).

When John Lennon sang Girl on the Beatles 1965 album Rubber Soul, I was old enough to listen to the lyrics and be stirred by their meaning, and though sad melancholic love songs are just that, there is something in the lines in the last verse of that song, that I recognized as poetry.

Was she told when she was young
That pain would lead to pleasure?
Did she understand it when they said
That a man must break his back
To earn his day of leisure?
Will she still believe it when he’s dead?
Ah, girl, girl, girl
Ah, girl, girl

In the 50’s and early 60’s, there were television shows I watched as a kid, like Father Knows Best, in which we saw an American middle class family with mom, dad and their growing children in small city USA, http://www.imdb.com/title/tt0046600/mediaviewer/rm3014130432 These folks presented the stable family unit, and were exemplified by Jim Anderson, his wife Margaret and their three children, Betty, Bud and Kathy. My father didn’t always know best and my dad was no Jim Anderson. My mother was as far from Margaret Anderson as could be, with her broken English, and shopping cart. Though they tried to fast forward themselves into American culture, my parents were greenhorns, Jews who had been displaced, orphaned in the Shoah, and their identity was shaped by their history. My mom was always well dressed though. Best dressed. A tiny woman, she would shop at Alexanders, the local department store, and buy clothing that she would re-tailor to fit perfectly. As much as they dressed like the parents of my schoolmates, they were different.

That first time I saw the Beatles on the television in our living room, where the family would gather at 7pm on Sundays, I felt the stirring of what it meant to be a young American girl on the cusp of sexuality and identity. Wow. It was such a liberating feeling.

The Beatles broke up when it was no longer fun for them. How psychologically healthy.

Time shows us that the swinging pendulum who gave us John Lennon and Imagine, Give Peace a Chance, spawned a lunatic John Hinkley, who shot him dead outside of the Dakota, a building I would pass on trips to the upper west side of Manhattan. I remember images of Yoko Ono and John Lennon hosting their marriage from the their bed, saying if only the people who made war, would stay in bed instead, there would be peace in the world.

Suddenly Mad- All we are saying is give peace a chance - John LennonSuddenlyMad- John Lennon and Yoko Ono Give Peace a chance - marriage bed bed

George Harrison wrote All Things Must Pass, and died at the age of 58 from lung cancer. He was a deeply spiritual man who often said, `Everything else can wait but the search for God cannot wait,’ and `love one another’. Ringo Starr (Sir Richard Starkey) is now 77 years old and still touring with his All Starr band. Paul McCartney (Sir James Paul McCartney) is happily remarried at 75 and still touring and making music. My favorite quote from him- And in the end, the love you take is equal to the love you make.

All Things Must Pass
Sunrise doesn’t last all morning
A cloudburst doesn’t last all day 
Seems my love is up 
And has left you with no warning 
But it’s not always going 
To be this grey
All things must pass
All things must pass away
Sunset doesn’t last all evening
A mind can blow those clouds away 
After all this my love is up 
And must be leaving 
But it’s not always going 
To be this grey
All things must pass
All things must pass away
All things must pass 
None of life’s strings can last 
So I must be on my way 
And face another day
Now the darkness only stays at night time
In the morning it will fade away 
Daylight is good 
At arriving at the right time 
But it’s not always going 
To be this grey
All things must pass
All things must pass away 
All things must pass
All things must pass away
____________________________________________________________________________________________
The joyful moments pass too quickly. Today my husband held me in his arms and we danced a little bit to an old Eric Clapton song, In Heaven https://www.youtube.com/watch?v=ueXtbIQ3shY.
Music soothes the soul. It’s the one art form that exists through time, in time. Sound traveling through time.
The present. I can still remember what I had for breakfast. Berries, yogurt and a protein shake. My husband makes these for me every day. Then I had a vegetable omelet and toast with fruit jam. I am aware of the daily confusion getting dressed, and getting through the day. I talk to myself when I’m alone, narrating the steps of what I’m doing. Crazy, but it helps me manage.
Before this disease took hold, I thought I had the luxury of time and that my husband and I would have time to make plans, travel, enjoy our children and grandchildren. That was less than 3 years ago. Now time is folding in on itself, like the prions mis-folding in my brain. Relationships that I treasured are gone! Poof.
My husband pays for part time home health aides, who come to help me get through the day, offer companionship, help me to travel, make sure I walk, inspire me to push very hard to be dressed before they get here. Inspire? Inspiration used to be something that would fill me with joy. Ideas, creative ideas, looking forward…always looking forward. Now fortitude is needed to get out of bed and get dressed and walk up the street. Fortitude replaced inspiration.
Fear of the future: My husband calls himself an upstanding guy. He certainly is that. Caregiving is absurdly hard and he does it methodically. He makes sure to prepare nutritious meals, buys me books, and pretty much everything I need, and today he danced with me. He even held me in bed, something he hasn’t done in many many months. Wow. We must be softening. I know when he is stressed after working and driving and is exhausted he has no patience for me. Today he was sweet.
He has told me he would never place me in a home. I have read about these broken promises on the caregiver’s forums. But I am hoping that never happens to me. I am hoping I will be gone before that even crosses his mind as a serious consideration. Before my care is too overwhelming. Please. Bury me in the backyard next to the hyacinths I planted 4 years ago (would that be legal?). The great writer and thinker, Sir Terry Pratchett who had Alzheimer’s and died at age 66, was buried on his own property, I believe. Speaking of Terry Pratchett, here are some wonderful quotes from him https://www.buzzfeed.com/kayetoal/23-of-the-most-beautiful-terry-pratchett-quotes-to-remember?utm_term=.lr4WobK47#.xwRDjYWro).  
Yet, I read Thomas DeBaggio who five years after he published his books about living with this disease, was a babbling incontinent Alzheimer’s patient in a nursing home who could not use his arms or legs. His wife loved him and took care of him for the first ten years but it became overwhelming.
This is the reason people do not want to be around someone who has the disease. Fear. Fear that the person they are speaking to will be someone who becomes something heinous, or impossible to recognize or care for – unknowable. an overwhelming burden. I’ve watched the videos of people with Alzheimer’s shredding paper, killing imaginary snakes. Lord help me to not go like that. Give me peace. A woman I know told me her mother had Alzheimer’s and died at the kitchen table. Just like that. Her head plopped down on the kitchen table and she was gone. I like that. Here and gone. I want to be surrounded by my loved ones, my husband and kids, telling me it’s okay to go, and just closing my eyes and gone.
Enough you say. This is too morbid. Sorry. We all die I will remind you. I just don’t want this to be insanely weird and horribly drawn out. It’s weird enough already.

I don’t want to forget the love. I don’t want to forget my husband, my children. My friends.

I don’t want to forget the Beatles.