Public and Private

Suddenly Mad- Self and others - Self Portrait with an abstract thoughtSelf portrait with an abstract thought

I’m a woman who has been diagnosed with younger onset Alzheimer’s disease. The symptoms came on fast and furiously in the summer of 2015. My very experience of reality changed. I was not forgetting things, and my memory was not particularly impaired at that point. What was happening is that I FELT LIKE I WAS LOSING MY MIND. I had so much anxiety and so much depression. I could barely get out of bed. When I did and went outside, everything appeared hyperreal. I knew what depression felt like. I had been diagnosed with major clinical depression and anxiety by a reputed NYC psychiatrist, who had treated me over the years with antidepressants and benzodiazepines. This was different. In the common vernacular it’s called losing one’s mind.

I tried to muscle my way through it. I was the chair of an art and art history department in a private school, and taught classes as an adjunct professor at an esteemed university. This will pass, I tried to comfort myself. It did not pass. I went to the psychiatrist who put me on a cocktail of medications. Within a few weeks I woke from a dreamless sleep, and found myself dreaming while I was awake. I’ll repeat that. I was dreaming while I was awake! These were fragments of a dream, and when I tried to remember the fragments, they were gone. What was happening to me? A psychotic break? The psychiatrist wanted to put me on am antipsychotic. I refused. I was terrified of what the medications he gave me had done. He told me to keep taking the Klonopin if I wouldn’t take Saphris the antipsychotic he recommended. Increasing doses of Klonopin would not get me to sleep. I HAD NEVER HAD INSOMNIA BEFORE THIS. He tried to taper me off the Klonopin, and stepped down .25 mg a week, adding Gabapentin. I was so trusting, thinking he knew what he was doing. Within a few weeks I had a UTI, and my muscles in my thighs began to have waves of twitching (myoclonus). My previously normal sleep cycle was destroyed. I could not fall asleep without the Klonopin and Gabapentin, but these would not keep me asleep. I woke every hour and the most sleep I got was 3 hours of broken sleep. Many nights I couldn’t sleep at all. I kept working and teaching and pushed myself. I began to have what seemed to me like narcolepsy. I would fall asleep while sitting up for a few seconds to a minute – my head would drop, and then I would wake with a startle. After 8 months like this taking Klonopin and Gabapentin at bedtime, and getting 0-3 hours of broken sleep, I entered a detox facility and the medications were stopped abruptly. Then I could not sleep at all. My blood pressure which had for years been 120/80, skyrocketed to 160/120. I was inconsolable. In the aftercare “retreat” I was sent to after the detox, I saw a psychiatrist, and asked him what he thought was happening to me. He said he thought it was Alzheimer’s or dementia. When I returned home I was unable to sleep for weeks and then months. Yes, I could not sleep at all for months. I began to see overt signs of memory impairment. When I went to the refrigerator to get something to drink, I saw that I had left the cup which I had just had in my hand, on the other side of the kitchen. Moments of awareness were lost. And there was tremendous apathy. I could not do anything. My school books and lesson plans which needed to be organized for the upcoming term, lay in a stack on my dresser. I looked at them from my bed, and wondered about how weird it was that I had lost the initiative to get up and do what needed to get done. A gulf existed between what was my previous normal functioning, and the person I had become. This was well beyond any depression I had experienced. This was the apathy of Alzheimer’s that had taken hold and though I wanted to push myself, I no longer could. The voice in my head would tell me to get up and be normal, but I couldn’t get my body to respond. Without a normal sleep cycle, and months of no sleep, my life had completely unraveled. Finally I opened my laptop and looked up online tests for memory. When I took the tests, it was obvious that my memory had become impaired. I made an appointment with a neurologist at a top teaching hospital in New York who specialized in dementia. He ordered a Spect scan, and told me that the pattern showed Alzheimer’s – diminished blood flow to my medial temporal and parietal lobes. He said the medications I had been given unmasked the disease.

The literature on Alzheimer’s tells us it has a long preclinical stage. I probably had this disease in the making for a decade or longer. I never suspected that the glitches of forgetting my keys, losing jewelry, walking into a room and forgetting what I had gone there for, having to constantly reread paragraphs I had just read, was anything other than aging and stress. I didn’t know there was a relationship between depression with anxiety, and Alzheimer’s. I didn’t know anything about Alzheimer’s disease. Like most people, I thought it affected memory and knew it is a terminal diagnosis. I didn’t know it breaks down the body, and affects everything as it steals memory, stealing appetite, the ability to dress oneself, bathe, talk, walk and finally swallow.

Whether the years on anticholinergic antidepressant medications along with anti-anxiety meds unmasked the disease, or caused it, are bones of contention that will never be solved in my lifetime. The many depressions and relapses were indications of an oncoming neurodegenerative disease. I have a terminal brain disease and it is progressing. Three years after the trauma of being on and then detoxed from Klonopin and Gabapentin…three years after everything in my life I had been doing felt impossible to do any longer, three years after the onset of Alzheimer’s  – I now have wobbly gait, find myself unable to finish sentences, drop pronouns when I speak, have difficulty swallowing, am unable to select clothes from my closet and drawers unless I preplan what I will wear the next day and put it on a hanger (including underwear and socks) and can only dress myself from the hanger. I am unable to follow the steps in preparing a meal, and though I’ve succeeded a few times to prepare a plate of food and have made scrambled eggs and toast with jam, I now can’t even make a sandwich. Often when I type, letters are reversed or completely misspelled. I have to go very slowly in order to accomplish ANYTHING. I write a list everyday which includes reminders to eat, which I check off as I do. This is dysexecutive dysfunction. It indicates my frontal lobes are affected now. It places me in a different subgroup of Alzheimer’s where there is greater frontoparietal cortical thinning.

Where does all the research lead? No where. The question is how to live with this disease while I am still able to. How to push through it and maintain a modicum of independence?

What can I still do? I can still take showers and wash my hair, brush my teeth, use my iPhone and take photographs with it (and upload them here). I can apply makeup, do my hair and clip and file my nails. I can visit the few local friends I have left and not get lost. I can read. I can attend a program for people with dementia at The Alzheimer’s Association in New York (my husband takes me every few weeks), and do participate actively in discussions. I remember peoples names in the group and converse with them. I can get to a program in New York at The Rubin museum for people with dementia, which I’ve been attending once a month for a year. I’ve traveled there alone on the train two times. I can get there myself, but have a lot of anxiety doing this alone. I can climb stairs and descend stairs. I can ride on an escalator. I can buy a Metrocard in the machine and use my debit card, and remember my pin number. I can ride the PATH train by myself and get off and on the train at the designated stop.  I can draw. I participate in online Zoom chats with people who have early stage dementia. I do yoga with a yoga teacher my husband has hired to come once a week. I am able to go on a recumbent bicycle and can sustain riding for up to six minutes. I go to the park and walk. I can heat food in the microwave, and can eat it with a fork and knife or spoon. I can pour myself the green drink my husband prepares for me and leaves me when he goes to work. I can do dishes and I dry them and put them away.  I can go to the bathroom by myself. I can still play a strong game of Scrabble. I play Lumosity games on my iPhone. I can use the remote control for the television and select movies and episodic tv shows. Lately I’ve been binge watching The Flash. I can type these words on my laptop. This is a truncated list, but not far from the truth.

What do I wish I could do? Everything I was able to do – before this happened. I wish I had what is called anosognosia, which is a lack of awareness of having Alzheimer’s. I wish I had the physical strength I had before. I was a weight lifter and trained twice a week. I rode my bike every day for miles. Now it sits in storage with deflated tires. I miss myself, the self that was tireless and active. Now I have to push myself very hard to get through the day and keep moving.

I get very anxious. I get anxious with every transition. I get anxious about going places. When I do go I’m happy about it. To simply be able to walk is an accomplishment, but going places in New York is a challenge that rewards with experience that I can write about.

My dear friend Jackie and her husband Lon picked me up and drove to The Museum Of Modern Art in NYC. The main lobby was different from what I remembered. It was the same space but the layout had changed. What I remembered as being on the left was now on the right. The information area with the beautiful six panel Brice Marden painting above was still the same. I knew Brice Marden when my son and his daughter attended the same school. I remember speaking with him at the Guggenheim museum and meeting his wife, Helen, also a painter.

Suddenly Mad- Self and others (main lobby MOMA)Suddenly Mad- Self and others (MOMA - Brice Madden painting above ticket area) Brice Marden painting above the ticket area

I was thrilled to see that there was an exhibit of Constantin Brancusi sculpture. Brancusi (1876-1957) first exhibited his work in the famous 1913 Armory show, alongside Pablo Picasso, Marcel Duchamp, Henri Matisse and other vanguard artists. Born in Romania, he learned and became a skilled woodworker. In 1904 he moved to Paris and developed a vocabulary of simplified shapes and visually reductive works that evoke rather than resemble the subjects named in their titles, pushing form to the threshold of abstraction.

top left to right -Malastra, Fish (two views) bottom left to right- The Cock, Mlle Pogany

Bird in Space, 1928, bronze, is his refined figure of a bird in it’s most concentrated form. The first was made from marble, then bronze and plaster versions followed in the years and decades to come. Of the nine existing bronze versions, no two are identical. When I first visited this museum it was in the old building that was erected in 1939. Bird in Space was installed at the top of the landing on the staircase that ascended to the galleries. To me it soared in that location. It appeared dwarfed in this large room.

Suddenly Mad- Self and others - Bird in Space - BrancusiThere were many strange things about being in the museum and seeing the exhibits and art. Since I knew and still know so much about art, I was struck by how the sculptures in the Brancusi installation were presented. One piece (Newborn) was in a glass vitrine. Brancusi would not have approved. For him sculpture is the way it appears in space, the way form interacts with space and any intervention, like a vitrine, would not have been the way he intended the work to be seen.

Suddenly Mad- Self and others - earliest version of the Endless Column - BrancusiEndless Column, 1918

Brancusi had used a single or double pyramid as a base for his sculptures, but eventually came to see this abstract construction as a fully realized work. Carved from oak the succession of pyramids forms a rhythmic and undulating geometry that suggests infinite expansion. In 1937 he erected a steel Endless Column in Tirgu-Jiu, Romania, that soared ninety-eight feet into the air.

(Memory. Brancusi. My husband introduced me to his work. I came to understand that Brancusi reduced form to it’s essence. There are so many feelings for me related to his work that go beyond the work itself. Memory. The book of Brancusi photographs I gave my husband on his birthday. The aluminum lathed sculpture my husband made that looked like an organic egg form growing in the center out of the tubular ends. The lead pieces he cast that were like pods from another planet. The limestone cone he carved that lays on it’s side. He was a brilliant artist. He was. Now it doesn’t matter. He didn’t keep going. Now I am approaching the end of my life and he is my caregiver. The life we planned became something else. This was to be a time in which we would have time to still explore our passions, make art, films, write, travel and explore. Be together and remain strong. Then this horrible disease came for me and because of this it came for him too. The life we planned did not happen).

Suddenly Mad- Self and others - Alexander Calder Fish and Net mobileAlexander Calder, Lobster Trap and Fish Tail, 1937

Jackie and Lon and I went up the stairs. There it was, the Calder mobile I remembered hanging overhead. Calder attended Stevens Institute, the engineering college in my city. He went on to develop a new form of sculpture, the mobile. His innovative use of materials, gracefully moving mobiles, and startlingly unique stabiles made him distinctive and a pioneer in his field. His works concerned with space, motion and the relationship between the viewer and the artwork advanced modern art. When I walk up the hill to Stevens Institute, I look at the mobiles he gifted to the institute that hang in the library entrance.

On the second floor we went into an exhibit called Being: New Photography 2018, which poses the question, how can photography capture what it means to be human. The works call attention to how individuals are depicted and perceived. Some use proxy objects replacing the body, as in Matthew Connors, Mask in Reverse.

Suddenly Mad- Self and others - New Photography - Mask in Reverse - Matthew Conners - Moma

Others challenge the conventions of photographic portraiture, depictions of the body, gender, transformed images of the past…making the present an embodiment of how personhood is expressed today.

(I see that these photographers are grappling with the same questions my husband was dealing with in his art work when I met him. What it means to inhabit ones body, consider ones gender, to be a human. How it feels to be alive, the struggles, the joys, the isolation from and the connectedness to others. Then life happened. Work and toil eclipsed art for my husband. I am so sad for him. He did not deserve to give up his dream. He always helped me so much. Always supported my vision. He should have developed his own. He had a great mind and so much talent. I am sad for him having to be my caregiver now. I feel so useless in this disease. Feel that I am a burden. I am unable to contribute much to what was an equal  partnership. I am so sad about this. I am so sad for him being trapped by my decline).

It takes grit to keep going as an artist. To keep creating. Those who make it and keep going and developing are to be admired. Phillip Guston was such an artist. He said, “Painting and sculpture are very archaic forms. It’s the only thing left in our industrial society where an individual alone can make something with not just his own hands, but brains, imagination, heart maybe.”

Suddenly Mad- Self and others - Phillip Guston- SourcePhillip Guston, Source, 1976

Suddenly Mad- Self and others - Phillip Guston -TalkingTalking, 1979

Suddenly Mad- Self and others - Phillip Guston - Inside the StudioIn the Studio, 1975

It takes immersion and context to understand an individual’s contribution as an artist. I reject the idea that art can be dismissed when a person is not interested in learning. Before I got sick I considered myself a lifelong learner. I still try very hard to learn and grow, as much as it’s still possible. I research and read, and share my experience.

Two more great paintings I saw at MOMA, by artists I admired. Both are gone now.

Elizabeth Murray (1940-2007) was a New York artist who I knew. She had a wild shock of white hair and crystal blue eyes. Her work blurs the distinction between abstraction and representation. Her shaped canvasses and multipart supports challenged traditional conventions of painting. Using bold colors and biomorphic forms, Murray introduced a dynamic sense of movement into her imagery.

Suddenly Mad- Self and others - Elizabeth MurrayElizabeth Murray, Do the Dance, 2005

I was always struck by the stark meditative paintings of On Kawara (1932-2014) who began his Today series, or Date Paintings, in 1966. He worked on the series for nearly five decades. A date painting is a monochromatic canvas of red, blue or gray with the date it was made inscribed in white. The quasi-mechanical element of his routine makes the production of each painting an exercise in meditation. Despite the mechanical appearance the paintings were meticulously hand made. In the contemplation of the series, we glimpse a sign of life beyond the dated works themselves, on the horizon of unlimited time, an act of rupture within the continuity of time.

Suddenly Mad- Self and Others - On Kawara - April 24 1990On Kawara, April 24, 1990, 1990

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People

The woman who wrote my recommendation for graduate school was the famous artist, Louise Bourgeois. She lived to be 99 and produced an amazing and abundant body of sculpture, drawings, prints… She said that art was her religion.  It’s the expressive creation of  the self in a material form. Music and dance are ephemeral, time bound. Literature has to be read and deciphered, or performed and seen (drama). Visual art exists, is brought into existence and is.  It is physically imbued with expression, the spirit.

A woman who read an essay I wrote for Dementia Action Alliance contacted me around six months ago She said she had never considered that PTSD (post traumatic stress disorder) and trauma could contribute to the development of Alzheimer’s, and was interested in my perspective about how the Holocaust and it’s impact on my late parents who were survivors, set me up for getting Alzheimer’s. She said her late father had Alzheimer’s and was a child during the Armenian genocide (1914-23) and wondered if his exposure to persecution and the murders in his own family, caused post traumatic stress which much later became Alzheimer’s. She found my essay about the relationship of depression/anxiety and PTSD leading to Alzheimer’s interesting. She said she had never read this before. BA wanted to interview me by recording me on a Zoom chat, and posting it to her website as well as uploading it on a worldwide server. I asked her to please allow me to see the video before she uploaded it. She told me her internet connection was too slow to be able to do that. I told her she could post it to another server so I could watch it privately. She said no. Then she uploaded it and the video went live and I watched it. I appeared confused, didn’t answer her questions directly and instead went off on tangents. My speaking was aphasic and the answers were rambling, to say the least. I felt humiliated and wanted her to take it down, because it showed me struggling to communicate. It made me very sad to see this. Because she showed an interest in reading my blog and replying to my posts, I didn’t tell her. I didn’t want for people to google me and beside my films and writing which comes up, to see me like this. I want my legacy to be the work I have done, the films I have made, the writing, the art – not this disease. I watched it again last week, after she wrote me a reply to my last post, saying, While some write of what they still have and are able to do, you write of what you have lost. 

I asked her who she knows that has Alzheimer’s at my stage, that writes about their experience, is able to provide a mirror of themselves in the disease through writing. She mentioned a woman who posts videos of herself, talking about how she hallucinates.gets lost and sometimes doesn’t know who she is. I watched the woman’s videos and saw that it’s not likely she has Alzheimer’s. She has Lewy Body disease, and possibly Fronto Temporal Degeneration, which is very different from Alzheimer’s. So I understood that BA lumps people with all the dementias together. To say to me I write about the losses where others talk about what they still have, missed the point entirely. For me the changes are in my functioning, the difficulty performing the activities of daily living. That’s what Alzheimer’s does to a person and this is germane to my experience. Yet I push every day to be as independent as I can be. She said I am always talking about my losses, yet when I pointed out how much I retain in writing about art, she claimed to not be interested in what I taught to my students (art history) or my interest in what she calls modern and avant garde art. She said she gets intellectual stimulation from listening to opera and sometimes seeing ballet. I let it go, but I was hurt because through writing about art I am able to share my ideas and perceptions. This means I have retained knowledge and a degree of sophistication. It shows that even with Alzheimer’s, I know I am not just a plebian. It means I still know who I am, because I am still connected to who I was.

I viewed the video she made of our Zoom chat a few weeks ago. Humiliated to see myself rambling and confused, unable to answer her questions in a cogent manner, I asked her to please take it down. I told her I had never had a chance to preview it, and found it humiliating to see it online. She tried to twist my arm to keep it up. My husband called her to request it be removed. She never answered his call. Then I thought about what’s really important to people who have Alzheimer’s. Kindness, understanding, encouragement, compassion, RESPECT. Was this woman offering that to me when she told me that she does not share my passion for art and what I taught students for so many years? Why say this? She is obviously interested in how a woman she interviewed who has Lewey Bodies and FTD, decorates her walker with purple fabric and talks about not knowing who she is and getting lost. But when I write about art and demonstrate that my memory and communicative ability to write and reflect are not fully impaired, she tells me she does not share my passion for art. This did nothing to encourage me. I was hurt. This is not something you say to someone who is fighting a disease and is vulnerable, and has been trying to retain her passions and abilities.

Finally I prevailed and got her to take down the video, by siting privacy policies  for online videos.

GREG O’BRIEN is an amazing writer who has Alzheimer’s that is slowly progressing since his diagnosis in 2009. That means he was diagnosed early, as it’s 2018 and he has just completed his second book, Beyond Pluto, and writes a blog for Huffington Post and Psychology Today. He is still extremely adept at speaking publically about his experience with the disease. He has retained his sense of humor, and his ability to communicate clearly about how the disease has affected him. That is advocacy and teaching.  If I were like that, I would be doing that too. I would be out there advocating for de-stigmatizing Alzheimer’s. I would be speaking to groups. Greg called me last week asking me if I wanted to be a part of the registry of people with Alzheimer’s in UsAgainst Alzheimer’s. I do want to be a part of this registry. When he called, I had trouble speaking to him on the phone. I had trouble speaking! I felt very sad about this because I wanted to tell him how much I admired his writing and the advocacy work he does. I wanted to tell him about my experiences having this disease. I asked him if we could try again, and he said to shoot him an email to set up another day and time.

My best friend Ruth keeps me going. She visits me nearly every day, and her door is always open to me when I can make the walk to her apartment which is 1/2 mile from my home. She makes sure I eat (lost my appetite in this disease and have lost a lot of weight), makes sure I remain conversant, listens to me, and tells me about her own life,  and brings a lot of joy into my life.

I’m not the most positive person because Alzheimer’s has progressed and a lot of things are hard for me to do. I appreciated that Greg O’Brien told me that extreme depression is a part of what he experiences, and that he struggles too with keeping going. I am scared about what is happening to me. I write about this, but also write about what I still find interesting, beautiful and heartening.

 

5 thoughts on “Public and Private

  1. First let me clarify that I am not Minna’s wonderful friend and neighbor Ruth, but a cyber friend from the West Coast, who just recently connected with Minna.
    Minna, thank you so much for sharing your life journey in such an intimate way and allowing us strangers into your life. Having just read your blog, I am in awe of your accomplishments and the many gifted roles you had in your life. I have walked this dementia journey with my husband for some years now and see similar desperation and trying to come to terms with the challenges of this disease in him. He was forced to surrender so much of his life to this illness. Sometimes all I can do is to stand witness to his journey and try to ease the way. No words of wisdom here, just putting one foot in front of the other, walking each other home.

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    • Dear Ruth, You are in spirit a lot like my friend Ruth, who is helping to walk me home. I call her my friend at the end. Your husband is blessed to have you by his side. Thank you for reading my words and for your understanding.

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  2. Oooh, I really like that image: all of us walking together like the Israelites through the desert towards the promised land. 🙂 🙂 🙂

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  3. Dear Minna,
    Sorry you are progressing and becoming weaker and more tired. Fatigue is common and for me so is restless energy. A cruel combination that leaves me feeling so exhausted at times because I can not stay still to rest. But we plug on… what else can we do. Crawling in bed and staying there is not an option in my mind yet. Maybe someday, but not now.
    I agree that it was not very nice of that person to show no interest in your knowledge of art and views. I would have been hurt too. The fact that you can still share them is a gift. I appreciate you sharing them and I am sure many others feel the same way. So please keep sharing.

    PS…I also believe in the connection of anxiety, depression, PTSD and the drugs used to treat these to developing dementia. But also agree will probably not be our lifetime when they finally figure it all out.
    Looking forward to all you have to share Minna.
    Thank you.
    Julie

    Liked by 1 person

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