This is the last drawing I made of my husband Wayne. I call it Beauty Boy because to me he is the most beautiful person in the world. Our situation is difficult, troubling and tragic. I have Alzheimer’s that has progressed and Wayne has stage 4 metasticized lung cancer and has had many courses of radiation and has begun chemotherapy. I love his attitude. He appreciates every day, takes pleasure in every little thing – the flowers he sees, the song of the cardinal, and sends me photos and plays the recordings he makes of birds. The drawing shows him in a robe. The background is bursting with flowers, and it a scene in which he rules the mesmerizing universe, with two owls standing beside him. The wise owls are his sentry’s. They guard him.

Writing now is very hard, but I still want to express myself. What has happened is that my thoughts are fragmented. Memory is spotty. I see a face in my minds eye and try and think of the name. It doesn’t come. I reach for my phone, then realize I don’t know where to start to look. Is It someone that I knew that I want to remember?

In other words, I am getting lost. Lost in a place where I can’t find my way. Physically I know where I am. I still know my address, the city I live in, and remember my phone number.

I recognize my family, my friend Jeanne, my friend Janet, my friend Razel, my niece Caarin, my friend Jackie… It’s not being lost physically, it’s accessing information. Processing my thoughts. And in my case a loss of control over my body. Moving around. Functioning. I can walk, but feel imbalanced. I think this is called Ataxia and it can include gait abnormality. It’s obvious that I’m ultra cautious walking down stairs.

I sit much of the time. I have to remind myself to get up and walk around. I know that I began pacing around my living room so that I would not forget how to walk. But that action became a part of my routine when I get downstairs in the morning, because I don’t know what to do with myself to start the day. Then I take my robe off and hang it up in the bathroom on a hook, and go to the notebook I keep on the kitchen island to write the list for the day. On the list, I write what I have to do that day. But I also write and rewrite who I want to contact, the people who have written to me in response to this blog. I do not write to them, and for this I apologize.

I remember that my friend rabbi Michael Schudrich told me he was getting married again and that he thought this would make me happy. I’ll be honest, I am happy that Michael has found happiness but I am jealous that while he is blessed, my husband and I are facing the end of our lives.

I no longer go outside by myself. Why? Fear? I don’t think I’ll get lost. I still know the layout of the streets.

On my list I keep writing to contact my old friend Jeff, who was my colleague and also a teacher at the school where I chaired the art and art history department. He had been sending me updates but stopped writing, I guess when I stopped answering him and responding by email. I write his name and underline it, so I won’t forget him. Jeff are you reading this? Do you wonder what will become of me? How I am managing?

I heard from my friend Dina, when I wrote about my husband’s diagnosis. She asked if there was anything she could do. Dina moved to Montana from New Jersey. What could you do Dina from Montana? You could send me a text or an email, and check in with me. You could tell me what it’s like living in Montana and how your daughter, Jaeli is faring. How is Todd? Is his brother in the nursing home okay?

I write the name Judith O’Connor, who I’ve never met in person, but befriended in a forum called Alzconnected. Judith, you used to send me links to virtual tours of museums, and jpegs of your paintings. I am still here and this drawing is the last artwork I made.

I write the name Yvonne S. who I’ve known for years through our synagogue. I wonder if you realize we are still here and know what is going on with us. Did rabbi Scheinberg talk to you about us? I asked him to. I was so sorry to hear about the death of your brother. I never wrote that and I am sorry about that.

I write the name Stuart Waldman, whose wife Maryanne died after living with Fronto Temperol Dementia for seven or eight years. Do you know that I still think about you?

I hear from my first best friend, Maxine, by text on the holidays. I remembered her birthday on April 7 and wrote to her. That is two days before my sons birthday on April 9.

I think about Harriet T., who I know from my synagogue, and is the wife of my former film editor, Harry. Harry used to visit me when i first became ill. Thank you Harriet for sending us some meals. Your Sarah got married and is now a mother too. Did you know Soren has four children now? Ellie is five and half and the twins Michael and Sara are two and half, and baby Ian is now nine months old.

I don’t want to be forgotten. I am afraid. Of course I am afraid. The two worst diseases have befallen us and I am unable to take care of our finances and I don’t know what will become of us. We take it one day at a time. Our daughter is the only one who is responsible for both of us now. My husband is my caregiver, and in a sense she is his caregiver, checking in on him daily by texting and calls and coming here on weekends, making sure we are eating, making sure he gets rest, making sure he walks and exercises and drinks enough water. Going to Memorial Sloan Kettering with him for chemo and oncology appointments.

Jeanne drops off meals once a week. Janet does this also but she fell and broke her toe and won’t be able to help for many weeks. We are grateful to Caarin my niece who visits and brings meals every few weeks and takes me out for walks.. Razel calls me on Facetime once a week. My friend Larry facetimes me on Tuesdays. I zoom chat with Jackie Pinkowitz on Wednesday nights.

I would never have imagined that we would be in this position. It shows that anything can happen. We’re not that old. Both sixty seven. Time is our enemy and time is also our friend.

They say Alzheimer’s is hardest for those who are aware of the losses. The frustration. The attempt to keep going. The fighting to stay present. The grit it takes to fight. To keep fighting amid the losses. To still be here.

I am a broken, sputtering machine, still trying to work. I know that words have meaning, and so I gave this post the title, The Broken Beast Dirge. A dirge is a slow mournful piece of music. Imagine the sound of a solo bagpipe playing a hauntingly beautiful tune for the fallen hero or heroine.

I was happy, capable, quick witted and always interested in tomorrow. How do I know? I see ads for rugs, runners, on my phone, things I thought about buying to decorate our home. Colorful things. I loved color. I liked to shop, I liked new clothes, furniture, decorating. Reds, purples, yellow and blue. I was eccentric, but I had desire and ability. I think it’s over six years since my mind started to unravel. Five years since the confirmed diagnosis. Alzheimer’s disease. Over five years since the Spect scan. That was at the end of September 2016. The FDG Pet scan was in February 2017. I count on my fingers. I remember the neurologist, Thomas Wiesnewski saying I would likely be okay for five years. That my cognition wouldn’t change that much until then. Then is now. I think he was guessing. He didn’t say I might have trouble walking, that my balance would be affected. He never said I might start to babble incoherently. That began in 2018. I remember hearing myself mix up words. I know that I have lost so much. I’ve read this illness is the worst for those who maintain awareness of what is happening to them. There are some who aren’t aware, who are blissfully unaware of the changes. Like Iris Murdoch, the great English writer whose husband wrote about her descent into Alzheimer’s. She happily sat and watched Teletubbies on TV.

To get started on this page today, my husband had to help me. I had forgotten that I had to login in order to see the word WRITE. I see that I haven’t posted a new page since December 2021. I thought I had written something in January, after the New Year. My childhood friend, Maxine, texted me, and wrote that I hadn’t written in my blog in months, and thought she would check in with me. The drawing has been sitting on my table for a months. It is my first and only drawing in 2021. I can still write. I can still draw and yet I haven’t. So here I am. Like a news reporter from the frontier of this land of forgetting.

This is a drawing of our grandson Ian. He was born on August 28, 2021. The drawing was made in December and completed in January. We now have four grandchildren, Ellie who is almost five and a half. The adoring big sister who leads the way. Michael and Sara are the twins, and they are two and a half. Our son Soren sends us photos every few days. The kids are growing, changing. Ian has started to eat solid food. In a short video Sara says the words ” I can’t”. She looks at her parents who are laughing, and repeats herself smiling, “I can’t”. Michael jumps from the coffee table onto some pillows below, and gleefully says, “down”. Ellie is learning to ski. We haven’t seen them since the end of November on Thanksgiving Day.

I used to say when a person has this disease, they can’t fight the progression. Now I know how true that is. The losses are profound. I asked my friend Jackie, who is the chair of Dementia Action Alliance, if she thinks I have progressed more than the other people she knows who have a dementia diagnosis and participate in the support groups on zoom. I asked her to please be honest with me. She said yes, I have progressed the most. I wish she had fibbed. She used to say that I am so talented, such a good writer, an artist too. Now I go on the support groups and look at the others and often don’t know what to say. I hold up my phone and show photos of my grandkids. Alzheimer’s show and tell.

Most of you know my husband was diagnosed with lung cancer last summer. After the diagnosis he was in great pain as the cancer had progressed to bone in his upper spine. He had radiation (a horrible ordeal) and the pain stopped. He is now on a second immunotherapy drug called Afatinib. He had been on Tagrisso for months but the last CT scan showed two new spots so the oncologist agreed to try Afatinib. His worst symptom now has been fatigue. He has a burst of energy in the morning, goes for walks, has been food shopping, and takes care of our home, the finances and well… just about everything. He takes care of me which is a big job. Makes me breakfast. Makes dinner, although our daughter has been ordering organic frozen food which is delivered by Amazon, so dinner is often just a matter of using the microwave. Once a week my friend Jeanne brings a meal, or my husband walks over to her house to pick it up. My niece Caarin brings a meal when she gets here every few weeks. My friend Janet also delivers meals every week or so. Sometimes our daughter orders food from local restaurants or cooks when she’s here almost every weekend.

I’m afraid to be alone. When my husband recently went to a doctor’s appointment to get an injection of a drug to help keep his bones strong, I knew I would have to get the day started alone. I would have to get out of bed, put my slipper socks on, and put my robe on, and walk down the stairs myself and make the tea myself. The crazy thing I do once I get downstairs is pace around the wall between the hall and the living room, fourteen times. I started doing this because I was afraid I would lose the ability to walk. Now I see I do it because once I get downstairs I don’t know what to do with myself. Quells my anxiety. Then I take off my robe and hang it on the hook in the bathroom, and walk over to the notebook in which I write the list for the day. I start with writing the date. Basically I copy over the list from the previous day and add what will happen that day, the zoom chats or Facetime calls from Jeanne or Razel, depending on the day, the social engagement clubs through Dementia Action Alliance and support groups on zoom. Once a week I have a zoom chat with Helen, a bio-engineering student from Columbia University, who participates in a program called “Conversations with Rachel”. We talk about art since I was an art teacher and art historian. We’ve become friends and I marvel how worldly and intelligent she is. She’s originally from (Soviet) Georgia, and she’s told me about her mother, her two brothers, and she’s shown me images of the city where she lived. Her mom and youngest brother still live there, and her older brother lives in California with his wife and baby. Twice a month I join a zoom group hosted by Jill Goldman and Amy Trommer, two social workers who began the group to help people with dementia engage socially. Once a week I have a facetime call with my friend Larry who lives in New Mexico. So I’m covered with lots of social engagement. Gives me the motivation to keep going, to connect. To still be a part of this ol’ world.

I started writing the current page weeks ago. I want to still have a voice. To still express myself, my viewpoint and to let people who read this know that I am still here. My thoughts are fragmented and living each day is a challenge. It’s said that dementia affects each person differently. In my case the greatest impact has been on movement, my motor skills. Not necessarily my fine motor skills, but my gross motor skills, whole body movement. My balance and walking are completely different from the time when I was well. My balance is often compromised and when I turn I forget how to pivot and catch myself before I tip over. I practice walking around my house. I can still climb the spiral stairs and go downstairs holding the banister. Sometimes I feel like this disease is more like ALS. Or Parkinson’s disease. I fall asleep on the couch and when I wake, I lay there telling myself to move, to sit up, and go to the kitchen to get my tea, and to the bathroom to get my robe, and go upstairs and get into bed (after I set up the hanger with the clothes I will wear the next day). It sometimes take over an hour to just sit up and stand and go. Once I am up I know what to do. I can manage okay by myself, once I’m moving.

Emotions. About dying in slow motion. Watching myself lose abilities. Trying to fight a disease that is unbeatable. These are thoughts I have every day. I dare not say this while on a group zoom chat. Pretend that it’s easy to live. Pretend. Be thankful that I am safe and warm.

In actuality it is sleep that is the only thing that gives me relief. I dream, and when I dream I do not have this disease. I walk normally, I speak normally. I go outside by myself.

A few nights ago I dreamt I was writing in this blog. But when I went to post it all the words moved to the left side of the page, and lined themselves up vertically, one word on top of the other, in a long stream of words going from top to the bottom of the page. Last night I dreamt I was with the actor Jeff Bridges, in a small hick town. We were walking through a big outdoor garage, full of trucks and vans. We walked together and I told him the best way to feel normal was to chew grape Bubbiliscious gum. I felt happy.

When everything is said and done

When the carrot has been eaten off the bone

When the friends have not only forgotten me

But I am no longer even a figment of their imagination

Then you will come in my room as you do

Take my hands and bring me up – standing

Looking into your eyes, the only land left

For both of us, each others eyes

Memories haunt

The children, our son and daughter

No longer children. Solid but fragile

We have abandoned them through no fault of our own

Time. Disease. Change.

From the beginning to the end. The mutated middle. Decline with peaks and gullies.

The peaks flattening into hills, eroding. The gullies filling with sand.

You used to call me Woman of the Dunes. How strangely prophetic.

Only you knew me

What a gift, my prince.

You are.

Fragments remain. The layout of the house. The spiral stairs, a corkscrew in space. The hall to the bathroom. The door to the patio. The door to outside. I dare not step out there when I am naked, in between taking off the pajamas and narrating the steps it takes to get dressed from the clothes I placed on the hanger. Although the urge to run away remains. My body is no longer my own. An alien has taken over. Apathy. Stasis.

Everything was supposed to get better. You’d moved back home. A fancy new red car. A modern kitchen. Stainless steel appliances. Money in the bank. Then…

Forgetting passwords to the accounts. Walking up the spiral stairs and into the bedroom. What did I want? Why am I in this room? What do I need? Nevermind.

Stepping out of the cab wearing platform clogs. Falling on the sidewalk. Falling again on Park Avenue. Why do I keep tripping and falling? Rushing to teach a class, I realize I’d forgotten to brush my teeth. Walking through the upper platform of the PATH station at the World Trade Center, then on the street, out past the Jeff Koons balloon sculpture. Retracing the route to get to NYU for the class I taught. Knowing I am an imposter. Knowing I am swimming through the deep end. Getting lost. Finally finding my way. Nobody noticed.

Five years since then. Maybe six. Now I hold the banister, my feet, monsters, clomp down. And then not knowing what else to do, I pace, around and around.

From there to here.

It’s been many months since I wrote here, and our lives have changed radically. How we have coped and are coping is what I will talk about here.

My beloved husband was diagnosed with stage 4 inoperable lung cancer in July.

At this point he is okay and not okay.

It started with pain in his back and under his right shoulder. I thought he was straining himself because of holding my arm when we went for daily walks. But the pain got worse and worse and one day on our walk he had to lean against a building because the pain was that bad. He made an appointment with a pulmonologist who ordered a CT scan of his chest and torso. There is was. Cancer in his lung had spread to his upper spine and lymph node and to an area of bone near his hip. He immediately had the scans sent to Memorial Sloan Kettering Cancer Center, where the first doctor he saw was the surgeon who told him it was inoperable because it had metasticized. He was referred to a young oncologist for treatment. The pain he was experiencing was excruciating. He was taking Extra strength Tylenol, then moved onto Oxicodone. Heavy duty drugs to kill the pain were not enough. Night after night he suffered waking with pain. Then the oncologist sent him to a radiologist. He had 3 courses of radiation which is palliative care. After he suffered through the radiation burn, horrible burning sensation in his chest, days went by and the pain subsided and at this point he says he has no pain. The oncolologist tested him for any genes that would enable him to be put on immunotherapy. It turned out he has a gene mutation that made him eligible for a gene therapy called Tagrisso. This drug has demonstrated that it significantly delays cancer progression, and is associated with fewer side effects than standard chemotherapy.

Waves of terror run through me. My beloved. My husband. We have been married almost 44 years. We’ve been through the highest highs and the lowest lows. But this is sheer terror that I must fight every day. He is well enough to go for daily walks, but wasn’t able to keep up an exercise program that the tele-health doctor recommended. There is fatigue. He needs to rest several times a day. He has to pace himself.

We have gone through the prayers, the hope, the negotiating with G-d. Please take me first I have prayed, and continue to pray every day.

This is a very complicated and tragic situation. He is my caregiver, the one who does everything for both of us. Now he is his own caregiver too. Beyond unfair. No one deserves to go through much turmoil.

Makes me think of the end of the movie Unforgiven which my husband loved to watch repeatedly years ago. Gene Hackman who plays Little Bill, says “I don’t deserve to die like this” to Clint Eastwood who plays William Money and is about to kill him. William Money then says to Little Bill, “Deserves got nothing to do with it”.

But this isn’t a movie, and we can’t pretend.

The disease has affected my balance severely and the simple act of walking is much slowed down as I weave around this house. I often have to hold onto the furniture and walls when I walk around. As before, I sit a lot. I need help getting started and my husband helps me to get out of bed and accompanies me down the stairs. I still push myself to shower and wash my hair, and do the routine I call, “dress, groom, teeth, hair, makeup”. More and more I look like a demented lady. I no longer recognize the face that stares back from the mirror, but I know it’s me. I dress myself from the clothes I put on a hanger every night before I go to bed. I end up sleeping on the couch with the ear buds in my ears attached to the TV remote control. fall asleep with the TV on mid series. I finished watching the entirety of The Crown. Often I go upstairs to sleep again for a few hours in the morning. I do sleep, but the sleep is broken. Sometimes my sleep is so clotted with dreams I wonder if I am watching TV or asleep.

What I am doing is trying to distract myself from the waves of panic. Fear.

I am not a good candidate for assisted living, or a memory care facility or a nursing home. I am not a contented dementia patient. I do babble incoherently a good deal of the time (I read that this is damage to my brain stem) but I am still conversational and can listen, speak and comprehend. I can function here. If you witnessed my “functioning” you would call it crazy. The reams of paper towels I use to dry the few dishes I use. Having to put my towels on the bathroom floor ready for me after I shower. The endless narration when do things which means I talk to myself out loud. The need to put the coffee cup I use in exactly the same place when I put it away. The same with my clothes.

I still know how to find the links to the zoom chats I go on – Dementia Action Alliance, Jill Goldman’s Alzheimer’s support group, my therapist Pamela, my friend Jackie Pinkowitz the chair of DAI, my friend Tim and Harry Urban’s support group. I can Facetime with my friends Jeanne and Razel. I so look forward to the visits from my niece Caarin, who has begun to reteach me how to knit. Besides the expense of a decent facility is over $10,000. a month. AND I never want to be hand fed if I can’t feed myself, I don’t want to be showered by aides. NO! I’m in the moderate stage of Alzheimer’s. I don’t go out alone anymore, I can’t prepare meals or go food shopping. I don’t function well outside this house, and my husband is usually here. But now he has cancer and I am terrified.

I wanted to die at home and that was my plan. I thought my dear husband would have many years to live beyond me. I am still praying for that. Quiet on the outside but frantically praying something takes me before him.

My daughter has told me that she won’t be my caregiver. My son now has four children under the age of five. His wife gave birth at the end of August. One will be five in November, and the twins will be two in a few days. This is a situation with no solution.

My body has gotten a lot weaker but so has my beloved’s body. He has to pace himself now. He has to rest a few times a day, take a little nap between the many things he still does. He takes care of our house, goes food shopping and prepares our meals. He is handy and has been fixing the floor tiles in the upstairs bathroom in order to reinstall the toilet properly that was leaking. He has been on unemployment since March when his company furloughed most of their employees due to the Covid virus. Now he has applied for Social Security. He used to say he would work until he was 70. He’ll be 67 in a few days. My Libra love. We are heartbroken together, but he still makes me laugh. A few weeks ago he cried out to me “I can’t take your relentless self pity!!!”. But then he turned that into a decree and wrote on a card that he folded and placed where I write my daily list – “NO RSP”

No relentless self pity.

Disarray (July 2020)

The disease has progressed a lot. That is what has happened and is why I haven’t been writing. This drawing is a visual representation of what it feels like now. I call it Disarray. Everything in the drawing is up in the air, and the connections between things are tenuous. I want people to know that for me Alzheimer’s has nothing to with forgetting who your children are, or the names of your grandchildren. You can be in the later stages and still remember their names. It is forgetting who you’ve been all your life. What makes you “you”. It is rapid aging and disintegration. It is the brain telling you that you are not here anymore. And yet you are here. It is confusion. It is panic when alone and not able to just get up, get dressed and start the day. It is an inability to start, and once I do, not know how to continue and the need to get up and pace around. It is everything as an obstacle – the cacophony of being outside and walking with my husband and not being able to filter sound, walking under the viaduct where a restaurant has set up tables with social distancing for dining outside during Co-vid, and the voices of the people dining, sounding like a din of loud noise that is so mixed and loud it becomes unbearable to hear. It is memories intruding on consciousness. Old memories, fragments. It is incomplete thoughts. A fragmentation of the self.

I’ll try and explain how this drawing is representative of my now. I started it with the images of the bananas. When I was an undergraduate art student, I was known as an excellent printmaker, and an artist and professor, Bruce Parsons, hired me to be the master printer for a series of etchings (intaglio prints) for an idea he had. He had returned from a sabbatical where he traveled to Africa, and learned about a tribe that did not refer to people by gender, but instead thought of people as ripe and raw. The series was called that – Ripe and Raw. The bananas were photographed on a cutting board. In the middle were the yellow ones. The time in life when you’re living your life as an adult. The green banana was placed to left of the yellow ones. It represented the beginning of life. The baby. The time when you’re not ready, when you need to be nurtured to become who you are meant to be. But life is short and before you know it you are old. After you are ripe, you become over ripe. Old age is that black banana. No longer ripe. Dare I say rotten.

The drawing contains a baby bottle with green liquid inside. I made a drawing of a baby bottle sitting on a chair when my son was a baby that I called radioactive baby bottle. In that drawing I placed it inside my bedroom and drew the rest of the room in perspective. Here it’s up in the air, and placed between a self portrait that is in pencil – not colored. The self portrait has lines on my forehead that represent bricks. I am a ghost in this drawing. A phantom presence experiencing the disarray of a luridly colored place where nothing makes sense. There are light bulbs hanging down on cords illuminating this catastrophe. A big head with an eye looks directly into a light bulb. The eye is blood shot but doesn’t really see. It is looking, an eye above a big swollen cheek. There is an anatomical heart, that has a truncated pulmonary artery and an aorta that branches out, weaving through books. Books that are floating in space. Closed books that are silent. Emblems of all the information and stories I no longer can read. There is a cactus, a forbidding plant with spikes. I included a drawing of the blue shoes I wear when I walk outside with my husband. The shoes with laces that I tie, narrating each step as I tie them. “Pull the laces tight, tie, loop the lace around and tie the bow, and double knot”. The shoes that allow me to keep walking, to take the walks with my husband on the route we take.

The couch sits under a light bulb. This is a drawing of the couch I sit in everyday, with a dent because I sit so much. The couch from which I watch television. Episodic series after episodic series, ad nauseum. The couch where I fall asleep with the ear buds still in my ears, waking to see that the television is still on.

Portrait of Wayne

Yes, I’m still here. It’s May and I know I haven’t posted anything since the end of March. My ability to write is still intact though I see that I ramble. My ability to move around and walk is impaired. My balance is way off, and I often feel like I’m going to fall when I turn around. Chewing and swallowing is now very hard to do especially foods that are dense. I still remember how to draw and take photographs, although I’ve been doing that less and less.

Everything has changed. Now Theresa is gone because the Coronavirus has forced everyone into isolation. She was concerned she might bring the virus here. I haven’t seen her since the end of March. She still texts me occasionally and I text her back.

My husband hasn’t been going to work. The company produces trade show exhibits for the pharmaceutical industry, and has furloughed two thirds of it’s workers. There are no trade shows scheduled anytime in the foreseeable  future. At first I think he was in shock. He went from working nine hours a day, crunching numbers, in contact with the designers and sales department to no work at all. He has now been taking care of our house, painting the main hallway, making sure the house is maintained. He takes care of me, does all the cooking and shopping, and makes sure to take me out every day for a walk (except when it’s raining). He holds my arm when we walk, navigating us both on the street where some people don’t wear masks, moving us into the bike lane when people go by who are oblivious to keeping a distance.

I didn’t write in April so I’ll go backwards and remember the highlights of our life in isolation. Wayne prepared Passover seders for both of us and we read from the Haggadah on both nights. I was able to teach him how to make choroset, which symbolizes the mortar the Hebrews needed to work during their enslavement. We ground the walnuts in the Cuisinart, and shredded an apple, mixing them together with a little honey and added a little red wine. This makes a paste that is spread on matzoh and eaten like a sandwich. It’s a recipe my late father taught me. My wonderful synagogue delivered seder boxes with chicken and potato kugel and pickled salad. Wayne made a chicken and matzo ball soup. We ate gefilte fish too. All the trappings of a Pesach seder. We texted with our kids and sent photos. Caarin, my niece, gave our daughter Mimi her matzoh ball recipe and Mimi sent photos of her success making them. On the second night rabbi Scheinberg conducted a seder online via Zoom and read from the Haggadah, taking turns with some of the zoom attendees. At that point we didn’t know what was happening with his company, and I guess we hoped that he would still be able to continue working.

Then out of the blue, my dementia mentor, wrote me an email that she would no longer hold weekly meeting with me. She wrote that over the past three years she has become more of a therapist than a mentor and that her role is to mentor and help me learn ways to work around my dementia. She wrote she has listened rather than help me. I was stunned. After three years I felt we had formed a relationship and that we were friends. Zoom chat friends. I’m still reeling from this.

I still zoom chat with Jackie Pinkowitz, the chair of Dementia Action Alliance. She isn’t fazed by my lamentations. She knows that I push myself and that I am not a quitter. She offers encouragement. Encouragement is key. And I have zoom chats with Tim who was diagnosed with Lewy bodies. He told me I am too hard on myself. Said I need to be kinder to myself. Jackie has said that to me as well.

It’s just that this illness has taken away so much of me; my resilience, my strength and sadly my faith. I used to feel like G-d was protecting me and my family. I didn’t fear. I was tough. A fighter. Confident that if things didn’t work out one way, I’d find another way. Now the simplest things are so hard for me to do. Everything is off. Out of sync. And I am full of fear. That’s because this disease is treacherous. It takes and takes. piece by piece.

When I was young I would never have believed that I would develop Early Onset Alzheimer’s. I thought I’d live to a ripe old age with all my marbles. I imagined myself near the end of my life in Tangiers walking along the shore on the Mediterranean sea, holding hands with my husband. I can picture it but I will never live to see it.

I didn’t know that depression is related to Alzheimer’s until I read about this after I was diagnosed. I had recurrent major depression as an adult. I went on antidepressant medications when I was in my forties and always experienced side effects. Yet they were helpful and stabilized my mood swings for many years. I had no idea though that the medications I was put on were anticholinergics and that they kill brain cells. Anticholinergic medications are now found to contribute to brain inflammation, a potential contributor to dementia.

The first neurologist that diagnosed me with Alzheimer’s (September 2016), said that my depression was not primary but neurological. I surmise that my recurrent depressions that started almost twenty years ago were the descent to dementia, the beginning of this illness.

I keep trying to write, to make sense of this but I can’t. How can I understand why my legs are becoming weak and wobbly? Why I am always wondering and asking my husband, “what’s next to do”? Why I hear my self babbling incoherently as soon as I wake up?  I want to still be here, but the me I used to be, the person who I used to know is disappearing. The person I was is gone now, replaced by an alien being. Everything seems hyperreal. Birds look like tiny dinosaurs. Plants and trees and flowers all look like creations from another world. Colors are so intense that they look almost artificial.

Nadir means the lowest point in a persons fortune. It’s a word I learned when doing a crossword puzzle and indeed describes my dilemma. I don’t want to be this burden I have become. I know where this disease goes and I am progressing faster now. I am aware of how distorted my brain has become. I am aware of how I feel, and how depression which I fought has turned into apathy in Alzheimer’s. I am cognizant of how hard it is to keep pushing myself. Yet that is what I do.

Old memories come out no where. Usually they are snippets of my childhood. My obsession with television, the black and white console in my parents living room. Sneaking in to watch movies late at night after my parents went to bed. My father tried to get me to stop doing this, and took a fuse out of the fuse box. I remember feeling for the fuse and accidentally sticking my finger in the hole that was supposed to hold the fuse. He tried to stop my late night television watching by taking a tube out of the television. I took a screwdriver and unscrewed the masonite backing behind the tv, and somehow figured out how to get the tubes back in, and made the television work. I was smart and sneaky.

I remember the movie The Incredible Shrinking Man written by Richard Matheson . I watched it on tv when I was a child and it had a lasting impact on me. It tells the story of a man who is exposed to a radioactive pesticide cloud and starts to shrink. First he shrinks a few inches but after a while he is three feet tall. His condition becomes known to the public. when he learns there is no cure for his condition, he lashes out at his wife. he shrinks to the point he can fit inside a dollhouse, and has a battle with the family cat, which leaves him alone and lost in his basement. he continues to shrink to smaller than average insect. Towards the end of the movie he fights off a gigantic spider for a piece of cheese. He accepts his fate and is resigned to the adventure of seeing what awaits him in even smaller realms.

He speaks his final words, ” I had conquered. I had won. I lived. But even as I approached the dry flaking crumb of nourishment, it was as if my body had ceased to exist. There was no hunger. No longer the the terrible fear of shrinking. Again I had the sensation of instinct. of each movement, each thought tuned to some great directing force. I was continuing to shrink, to become…What? The infinitesimal? What was I? Still a human being? Or was I the man of the future? So close the infinitesimal and the infinite. Suddenly I knew they were really two ends of the same concept. The unbelievably small and the unbelievably vast eventually meet, like the closing of a gigantic circle. I looked up, as if somehow I could grasp the heavens, worlds beyond number. G-d’s silver tapestry spread across the night. And in that moment I knew the answer to the riddle of the infinite. I had thought in terms of Man’s own limited dimension. I had presumed upon Nature that existence begins and ends in Man’s conception, not Nature’s. I felt my body dwindling, melting, becoming nothing. My fears melted away and in their place came acceptance. all this vast majesty of creation, it had to mean something. And then I meant something too”.

He knows he will shrink to eventually atomic size. No matter how small he becomes, he concludes that he will still matter in the universe because to G-d there is no zero.

He says, “I still exist”.

I think I am remembering this movie now because this is an analogy for what I am going through. My brain is shrinking. I am changing. I am disappearing, I am looking for justification for why this happening to me.

My daughter and her boyfriend visited us just to take a walk together. They didn’t come into our home because of the Coronavirus. My husband usually holds my arm and helps me walk, but in order to walk beside my daughter (six feet apart), I had to walk by myself. My husband helped me cross the streets, and then my daughter switched with him and walked with me.

Obviously I have progressed in this disease. I need help getting through each day. There are so many things that I can no longer do. My strength and ability to navigate through the world is severely compromised. Expressing myself is often very hard to do. Sometimes I just point, and my husband seems to understand. It’s so frustrating losing words. I was a writer. I loved words. I loved stories. I loved movies. Now I narrate in texts to my daughter, sending her my daily selfie, telling her that I am finally dressed and ready, telling her about what is on the calendar for the day – do a laundry, what the date is, that her dad has just taken me for a walk, that when I returned the door to the dryer was open and the clothes I thought were drying were still wet. How I turned the dryer on again to dry my clothes. She wrote back “What a fabulous story. Thank you.” I see the humor in it and I see the tragedy too.

I don’t know how to end this, so I’ll end with a rainbow and some drawings of the people I’ve loved and some of the friends who’ve stood by me.

Portrait of Theresa

So much has happened over the past month with the invasion of the Coronavirus pandemic. Numbers elude me, though I read the New York Times and listen to the news. Hundreds of thousands affected globally, now close to a half million. Almost twenty thousand have died.

New York City, where I was born, and the city I always considered home, even though I lived a stones throw away across the Hudson River, is now the epicenter of the virus in the U.S.  The streets of New York City, the most vibrant, lively, nuanced, most multicultural city in the world, is now an eerie largely deserted place.

I’ve been sick with Alzheimer’s for a long time now. I was forced to retire from teaching a year after the diagnosis in 2016, but I know that I was ill a year before that. There were signs. This disease is treacherous. Early on it manifested as recurrent depression and anxiety, but now after four plus years, I have many motor signs, a lot of difficulty walking any distance, and my steps could be described as short and shuffling. I no longer go outside on my own, always accompanied by my husband or my companion, Theresa.  My language, or ability to speak sounds odd, like I am a robotic child is one way to describe it. I can make myself understood, but my sentences are often mixed up, poorly arranged, and I spit them out quickly to communicate a need, a thought, before it disappears. Giving myself directions out loud is the norm. Repetition and stuttering, beyond my control. I wake up to this alien who starts speaking Alzheimers. Babbling. Incoherent words that make absolutely no sense. I often wake with the thought, “oh no, I’m still here”. Another day to battle this, with the realization that every day it gets harder.

Hoboken, my small city, a metro hub of Manhattan, where I’ve lived  for forty three years, is now on self isolation meaning shelter in place due to the Coronavirus pandemic. People are advised to stay home and self isolate as much as possible. This is much like what my life has been like for the last few years anyway, but now the few friends I have who would visit and sometimes walk with me in the park, are also in self isolation. My already small world has shrunk.

My husband who had been driving to Connecticut three days a week and working remotely the other two, is now working remotely five days a week. I marvel at how he manages to do everything, the food shopping, cooking, paying bills, working on his computer, and helping me get out of bed, keeping me focused on starting my day, managing my recurrent panic and anxiety, as I beseech him to stay in the room or nearby as I get dressed. He listens to me babble, encourages me to walk, get off the damn couch, and move my body. He’s acutely aware of how declined I have become. It’s a very sad situation.

We still go for walks, the same boring route to the viaduct and back, because this is what I am familiar with, and the streets are wide enough to accommodate both of us. 1.8 miles is as much as I can handle. I run out of steam very easily. Not just physically but cognitively. My brain can’t handle too much now, which is why writing is frustrating and slow. I know what I feel, I have a sense of what I want to say, but the words are stymied. I start to type and the word is misspelled. I correct it and then forget what I wanted to say.

When I go for walks now, either with my husband or Theresa, there are now more parents tending to their little children on the street. Hoboken is on shelter in place, but you can’t keep little kids in the house all day. The playgrounds are closed but the parks are open. I look ahead of me and see a little kid riding a bike or a scooter coming towards us and I ask Theresa or my husband, “what should we do?”. My reflexes are slow, and I wobble and veer to the right and left. “Let’s cross the street”, Theresa says as she takes my arm. Then she suggests we cross again, and I turn with her, step gingerly off the curb and hobble across the cobblestones. Stepping up to the sidewalk level again, a span of about five inches, feels like conquest.

My husband joked that he should carry a tape measure to show people what keeping six feet apart looks like. He’s vulnerable to this virus, not only because he’s over 65, but also because he had surgery on a lung twenty seven years ago for spontaneous pneumothorax, and unfortunately he smoked for many decades. We are both vulnerable. Yet thankfully he remains pretty strong and healthy. He’s always been a walker and a hiker, and he goes out many times a day, now keeping a safe distance away from others. Since he is now working remotely five days a week, he can’t pay that much attention to me, and so Theresa who started to work for us over a year ago as my companion and aide, is still on board. She has witnessed the ravages of Alzheimer’s as it continues to strip me of strength, my balance and my executive function. I was a strong woman before I succumbed to this illness, and though I have honestly not wanted to live anymore, my body and spirit and faith have pushed me to hold on. Theresa has helped me to manage a modicum of routine on the two afternoons she comes here. We go for walks in an effort to keep me mobile, we share stories about our families, she has taught me to crochet, she cleans my kitchen and bathrooms, she vacuums the carpets, helps me do the laundry and makes my bed. Doesn’t sound like much, but her presence has been an important part of my life.

I’ve learned from her.

Last July, her daughter Michelle died in her sleep at the age of 37. Michelle had led a difficult life. There had been drug addiction and bad relationships. Though she was a college graduate she had no clear cut goals. Over the years, Theresa tried to help her, brought her to therapists, but recently told me she didn’t think Michelle wanted to live, found it too hard.

How anyone gets over the death of a child is beyond me, but Theresa has managed to carry on. She began grief counseling and little by little, she resumed her life. Then her brother, Thomas, was diagnosed with pancreatic cancer at the age of 63. That was two months ago. After five weeks of chemotherapy, his body failed him, and he died over a week ago. Just like that. Gone.

Theresa’s presence has taught me that while life is complex, unbalanced and unfair and often tragic, love is the glue. She practices acceptance. Her faith is strong and bound by her determination to serve. She continues to put one foot in front of the other, relishes in the love of her grandchildren and accepts each of her four remaining children, three daughters and a son, for who they are.

Love. I feel this so strongly now when my husband comes into the bedroom in the morning asking me if I want to get up. Do I need any help? He smiles. He beams when I smile back at him and tell him how much I love him. How much I appreciate everything he is doing. We’ve been dealt the tragic blow, and yet love remains. In fact it has grown. Sure, I miss our passion, sleeping together, making love, and falling asleep spent in each others arms. The trips we use to take. Hiking with our kids in the Southwest. Visiting our late parents in Florida. Swimming in the ocean. Laughing. He always made me laugh. And still does sometimes. He is the one now who encourages me to be honest, to write about what the experience of having this disease is really like for me. The difficulty. The confusion. The sadness. Time slipping away. One day after another, each a little harder for me than the last. Yet I believe because we have known love we will not forget.

ISOLATION

New York is on lockdown. The programs I was still able to attend are now closed. No more trips to the Rubin Museum. No more excursions to Lincoln Center.

This is a photo from Lincoln Center Moments. It was the last time I went to New York with Jeanne. It was a great ensemble that played jazz renditions of Broadway tunes. So in Love. I Got Rhythm. My Favorite Things. Summertime.

Now my friend Jeanne, who is 78, and who would come every Wednesday to play Scrabble with me, and bring a meal, is no longer playing Scrabble with me or visiting. Last week she dropped off a meal and stood behind the glass door in my vestibule and waved to me. The people who would visit me and keep me conversant, which is important in fighting this disease, are no longer visiting. Razel introduced me to an African game called Mancalla. Then she got a bad cold and then Coronavirus invaded. I haven’t heard from her in weeks. Our daughter and her boyfriend left their Manhattan apartment and are staying at his parents home in Long Island. My daughter used to come here every few weeks, we’d have dinner together and she’d tell me about her world travels for the TV show she has been producing. Now the company that produces the show has “paused” her work as non essential until she is able to work with her team again, travel and shoot more film. Manhattan is a ghost town and she escaped. It wouldn’t have worked for her to come here. I hardly sleep and she wouldn’t have had the patience to deal with me. So it’s better this way, but I haven’t seen her in many weeks, and really have no idea when I’ll be able to see her again. I text her every day, and she texts back, so we’re in contact, but I miss her. I wouldn’t have wanted to usurp her life the way my late mother in law did when her daughter took care of her for the last five years of her life, only regaining herself back after her mom’s death. But I’m still a mom and even a text, an email shared of an essay my daughter wrote for the film festival she produces, is appreciated. At least I know she is safe and well. I can’t visit my son or see my delightful grand-babies. He sends photos of them. The last was a picture of Michael standing on a stool which he had carried over to the piano by himself. He and his wife are both working remotely. He is a lawyer for a famous racing car company in Italy. Will that company survive? I worry.  He says they still need a lawyer in the US to handle their business. But what is the business is no longer? They have three children, twin babies and a four year old and a mortgage. I haven’t seen them in many weeks. I wonder when I will ever get to see them again.

Isolation is hard for everyone during this plague but Isolation is bad for Alzheimer’s in a different way. I am in a state of decline. For me it was a victory when I was able to get dressed and ready and get into the car for the drive to my son’s house. I would sit with Ellie and read to her. I could lift the twins and hug them. I was watching them grow and develop. I got to see them go from crawling to walking to playing with each other. Will I get to hear them speak when they start to talk? Will they know who I am? Will I still be able to read to them, lift them and put my arms around them?

I still go for walks with my husband and with Theresa, but the shrinking of my life is profound. I am lonely and tired of this life. I wish for a healed world and happiness for my husband, for him to be free of this burden of care for me. I want him to love again, to experience life again without all this sadness. He deserves a better life and I pray for him, I pray for my son and his family. I pray for strength and happiness for my daughter.

As for me, I know that the future holds no promise. It is their future I am concerned with.

For me it’s always the present, hanging on to the present, until the present is no more.

As for me, I hope my passing is swift, because I do not want to become more of a burden. Forgive me my transgressions, those who feel I have hurt them. I did not know you mattered so much. Now I don’t matter very much. It hurts to be discarded because of a disease. It hurts to be facing the end and know it. I would have preferred it to be swift and poof, it’s over.

A stillness is coming. The gift of going in my sleep would be appreciated.

 

Nobody Really Owns anything But we still Love To Shop, is the last drawing I made before early onset Alzheimer’s came on suddenly, spontaneously and has progressed quickly. It’s different from all the drawings I have made since then. Witty and urbane, it illustrates the way I used to think. It contains a message I still believe is true. This material world is not fully real. Everything is illusory. We plan, we attain things, we hunger for adventure, we strive for security and we want stuff. Life is desire. We want. We seek. We shop. And then it all disappears. The tipping point. In an instant it all disappears. Whether you are Rupert Murdoch, Warren Buffet, Jeff Bezos, Bill Gates… a billionaire or pauper, or anyone in between, it’s all going to disappear, because as we all know you can’t take it with you in the end.

That dress I bought from Barney’s, reduced from $2,000. to $50. was such a bargain. Seems like yesterday I was eagerly shopping at Barney’s on Broadway, picking my way through the sale rack. Now Barney’s is in bankruptcy. What’s that dress worth now sitting in the closet. 10 cents or less?

The pretty young woman in the mirror is no more. Her face is lined and there are bags under her eyes. The shiny dark hair has turned gray and is thinning. Who is she now? Is she the same person? The sturdy, handsome young man, his muscles bulging out of his tee shirt, his dazzling smile and gleaming eyes. Where is that boy? He lays in his hospital bed, his formerly bellowing voice now reduced to a whisper. “I love you”, he mews. “I am still your hero. Aren’t I?”

Everything changes. Morphs, declines and disappears. While we are here we tell the story. While we are here we are the story.

I no longer go shopping as I used to. I was that mom and wife who filled the refrigerator with all kinds of goodies, good food and staples. I shlepped and unloaded the packages. I filled the cupboards. I was an excellent cook. My family sat down for dinner together every night. Sometimes my husband was grumpy and tired after a hard day at work. Sometimes the kids fought or teased each other. Sometimes I felt like a drudge. Usually I felt thankful that I had two healthy kids who were smart and capable, a handsome able bodied husband who loved us. These are normal feelings. Life was not easy but we made a warm comfortable home and everyone was thriving. We were a two income family. I worked, I shopped, I cooked, took care of our kids, made sure everyone had clean clothes, shirts were ironed, the carpets were vacuumed, the surfaces dusted and gleaming. We took vacations, sent the kids to camp, threw dinner parties, went to concerts and movies, went out with friends and family. The kids went to good schools. I made films, learned screenwriting, studied art history, wrote lesson plans, mentored students. There were financial problems, emotional meltdowns, health crisis, but nothing seemed insurmountable. I was strong. Then. Ambitious. Always looked forward.

As the saying goes, “Life is what happens to you while you’re busy making other plans”.

I dreamt I was shopping at a large gourmet store that resembled Gourmet Garage or a huge Whole Foods in New York. I was with my husband and daughter, but they were in another part of the store. I stood in front of a display of flowers holding my shopping basket, thinking. In my mind I was designing a shopping basket retrofitted with a built in plastic vase in the corner. This was to be filled with water, so that the stems of flowers would stay wet until purchase. I felt like the old me in the dream. Just shopping and thinking.

In my reality now, a trip to the supermarket is a very big deal. An excursion. My husband will tell me I need the exercise, and after getting my shoes on and concentrating hard as I tie  the laces, after putting on my eyeglasses, then struggling to get my coat on, off we go to Shoprite to buy some fruits and vegetables, yogurt and my favorite, ice cream. My husband directs me now as he selects the items. He says “stand here”, and I obediently do just that. We’re both concerned that if I veer away from him, we might get separated and I might start to panic. He holds my arm directing me through the aisles. People pushing shopping carts crisscross and almost bump as they make their way around the busy store. To me this feels like an obstacle course. The lights are so bright and everyone is on their individual mission to fill their carts with food. The cases are filled with so many items. The savage looking meat aisle. The acrid smell from the aisle with cleansers wafts up my nose. There is an intensity to the experience of being there. I look down. He directs me to turn. I turn the wrong way, kind of frozen in space, like a deer caught in the headlights, and I end up facing in the wrong direction. He asks, “what are you doing?” I say, “I don’t know…waiting for you”. He grabs my arm and says, “straight ahead”, and we head to the dairy aisle. Then he says, “I think we have everything”, and we walk over to the scanners that read the bar codes on every item with a laser beam light that translates the binary codes into a coinciding price. He shows me how to properly hold the bar code up to the light and then I place each item on the conveyer belt. He packs the items into two bags, one for most of the items and a lighter one for me to carry. He wants me to feel useful. Even though it is more than likely a hassle for him to have to patiently wait for me to do each thing slowly, he is trying to not do every single thing for me.

A trip to the supermarket is now our date night. The inordinate patience required by the the caregiver spouse of his wife who has dementia is exhausting. Shall we call this love in the age of Alzheimer’s? Or would you call this assisted living?

Portrait of Julie

Julie is my friend who lives in Alabama, that I’ve never met in person. We met on the Alzconnected forums when I emailed her a link to my blog. We text each other, and have been offering each other support for many months. I’d spoken to her on the phone once a little over a year ago. She was diagnosed with possible Frontotemporal Lobar degeneration by one neurologist, but another doctor thinks it is Lewy Bodies. I suspect it’s a form of Semantic dementia. She is five years younger than me. At sixty, the disease has caused her aphasia  and she has written to me that it is increasingly harder for her to find the words to speak. I understand this as I stammer in search of words to express myself, searching through my rapidly depleting memory bank and coming up with blanks. We are from wildly different backgrounds. She’s a Christian, a Southerner who grew up as an army brat, the child of a high official, and lived all over the world. It is apparent to me that her devout faith is what eases the burden of becoming so ill in young middle age. She’s also a mom and a grandmother. I asked her if she reads the bible and she wrote yes, but not like she used to. Then she asked me if I did. I reminded her that I was born a Jew and she asked if I have faith. My answer was that I question. She wrote (verbatim), “That’s good. Keep question. Maybe you get answers. Many never even bother even question”.

Julie wrote that she does not go into the Walmart her husband drives them to. She stays in their vehicle with her dogs, and has sent me smiling selfies as she sits in her car with her dogs as she eats chocolate from a miniature Whitman’s sampler. She loves to go with her husband for these drives, but finds the experience of going inside the store causes her too much anxiety. Her way of protecting herself is to withdraw, and find her comfort zone. When she’s not with her husband, the dogs and a cat are her companions. In the time we’ve been texting her brother has visited her, and her best friend from college drove down from Pennsylvania and stayed a few days. Since I’ve never met her in person, I can’t really say I know her. I know her from the composite of words and photos that she has shared. I know that she strives to be okay with her illness, to choose acceptance, and to take care of herself as well she can. I know she was a college athlete and a swimmer. She still stretches and exercises some days. She doesn’t like it when I complain. She concurs that she too suffers, but tells me she is trying to be happy. I know some days are really tough for her. If I had just one word to describe Julie, it would be stoic. The stoic philosopher Epictetus wrote, “when alone call it peace and liberty, and consider yourself the gods’ equal. When in a crowd, think of yourself as a guest at an enormous party, and celebrate the best you can”.

I learn from her, despite my regression, bemoaning my fate with the tendency to dwell on the dark side.

When I wrote her “I want this to be over already”. She texted these words-

“I know. Don’t stay there. Somehow have to change your view. Look less loss. More moving on…Still much to learn here.”

 

Portrait of Mimi

 

Portrait of Soren

 

Portrait of Wayne

These are drawings of the ones who are implicitly tied to me (for better or worse). My loved ones. My adult children and my husband. The people I love. The people who are hurting because everything changed as a result of this “long goodbye” of mine.

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People

I have hundreds of photographs saved in my iPhone. They are a visual history of what has transpired since I became ill. As I scan through them, I see all the people who were a part of my life over the past almost four years, the years of the acute trajectory of this illness. For the most part these people have disappeared. The visitors I call them. Two years ago there were the young mothers, who would stop in with their little kids. That was sweet while it lasted. They’d tell me about themselves and how they came to be sitting in my living room. A few had had a relative who had Alzheimer’s and was now gone. I became someone who people would divulge their life stories to. My living room became a sort of confessional. I thought about those who refused to come near me. I came to realize how tainted I’d become. Maybe people thought they’d catch it to.

Jeanne has been the only one who has stayed since I told her about my diagnosis in September 2017. Jeanne, an unusual woman, 12 years my senior. My Scrabble partner who brings me muffins and dinner every Wednesday, who has escorted me to Lincoln Center Moments and the Metropolitan Museum program for people with dementia.

There are the zoom chats with people with various forms of early dementia. Most of them are still highly functional, living lives with purpose, advocating, traveling. My life is now a far cry from that, and when I describe to them how my symptoms have progressed, they look puzzled.

Jackie, the chair of Dementia Action Alliance has been a big support with weekly zoom chats. She encourages me to keep writing this blog.

Laurie, my dementia mentor, has stuck by me with weekly zoom chats for the last three years. She has not progressed quickly as I have. That is not to say she doesn’t also have symptoms. She does. Sometimes I feel remorseful. Why have I progressed so fast? Then I think about those who are no longer here. Susan Suchan who I met on a zoom chat, who so valiantly battled Primary Progressive Aphasia and cancer, and was only 60 when she died. Or Susie Bishop, a super talented film producer, who I never met, but read about her diagnosis of early onset Alzheimer’s at age 54. She died four months ago at age 59. I know for some this is a five year disease. Pat Summit, the great basketball couch, diagnosed at 59 and gone at age 64. So while I know where this goes, I am still here writing. Battling this monster. Learning to swat away the anger.. Ending the day with sadness, yes, but a smile as well. Learning.

Caarin, my niece, found me in August, boldly coming to my door. My niece who has never met her birth mother, my sister. My sister who has not seen me since before I became ill. Caarin, who knows the work of all the artists, contemporary, modern, ancient…the architects, the writers, the musicians…I used to admire and study. I wondered how that could be. How it is that she loves the illustrations of Maira Kalman, the illustrator who influenced the drawings I made before I became ill. Caarin came today and we went for the walk on the route I try to take every day. Afterwards she took out her knitting needles and yarn, and showed me how to knit a simple stitch, and then several rows of stitches in a red and pink yarn, the color of which I would have selected in a sweater when I used to shop. There is something interesting about this. There is this law of attraction that resides within us that may be part genetic, part cultural, that supersedes this illness. I am grateful for her. She brings light to the end of this tunnel.

 

SPIRAL2020_LifeInterrupted – My article for Rubin museum Spiral magazine

Self portrait with Guinea hen feathers – Dec 2019

I began writing this on the last day of 2019, the last day of the decade. It’s obvious that it will be 2020 when I’m able to complete it. It doesn’t matter. The date has nothing to do with this ongoing battle. I remain truthful about the unraveling of my brain. Can’t hide the truth.

Inspiration and imagination have been hard to come by so this drawing surprised me. It’s not one of my best, but it showed that I could still be imaginative. The inspiration was a mixed media sculpture I made 40 years ago. It was a birdhouse I crafted out of wood, and  covered it in green and black polka dot astroturf. The top looked like a house with it’s gabled roof flung open. On the wall near the sculpture, I glued guinea hen feathers in an arrangement that spelled the word Poof! My intention then was to illustrate the destructive role of technology, and it’s encroachment upon nature.

I started to draw the feathers and I pictured a whole page of feathers, like a trompe l’oeil painting, where the things depicted look real. I meant to cover the whole page with them.  Then I stopped after I drew four feathers, and the rest of the page was empty. The feathers looked like they should frame a face. So this is a self portrait, that it’s safe to say illustrates an outlandish creature.

As a young artist, I was drawn to the Surrealist and Dada movements. Now I see that it makes sense that the Dada art movement came about because the artists were expressing their discontent with violence, war and nationalism. It developed in reaction to World War I. This drawing is irrational on purpose. There is no rationale to what is going on with me and there is no rationale to what is happening in the world. 

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By now you have likely heard about the planned deadly terrorist attack on Orthodox Jews in Jersey City by a man and woman linked to the Black Hebrew Israelite movement.   in which a police officer and three civilians were killed in a prolonged gunfight. The two shooters also died in the attack. You have read about the machete stabbing of five people celebrating Chanukah at a rabbi’s home in Monsey, New York. Antisemitism has reared it’s ugly head in our great nation. It is a world phenomenon. Acts of violence against Jews have happened over the last decade in Europe. Now it has crossed the Atlantic. And the crimes are being committed by fellow Americans. In the last few weeks by African Americans. This is really of deep concern. 

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My nightmare

I’m a person who was diagnosed with probable Alzheimer’s, and also a child of deceased Holocaust survivors. The diagnosis came at far too young an age, 62.

I began to have paralyzing nightmares a few days ago. The other night I had a nightmare that horrified me, and I see now that it’s related to these recent acts of violence and my feelings of helplessness as I progress in this horrible disease. In the dream I was going to visit a woman I know who also has an Alzheimer’s diagnosis. I entered an apartment building and a doorman showed me the entrance to her apartment. The “apartment” was a small disheveled room, and she was sleeping on the floor on a mat. Her condition was atrocious. Her body was covered with sores, that looked yellow and blue. I looked at her and knew that I didn’t have the power to help her. I stepped out on the street and was approached by a friendly large middle aged woman who wore an elaborate coat, sort of a tapestry, with large areas of white fur. She smiled and seemed to know me, and I instantly felt I had found a kindred spirit. Then I was both outside on the street and also inside another apartment. The scene kept switching back and forth. I stood by a window and watched a little girl climb out onto a roof between the window and the adjacent building. Then I was outside and a crowd of people were gathered. There was a sense of imminent danger. I crouched by a car protecting another little girl with my body. Then I was inside the room again, looking out the window, and the first little girl was walking back and forth on the low roof between the buildings carrying a small bag. The building on the other side became a car and the little girl walked over to it and someone inside opened the car window and handed her a large gun, which looked like a black machine gun.  I was outside again protecting the other little girl when the woman I met earlier, with the elaborate fur coat walked over to me smiling. Before she could say anything, gun shots rang out and I saw that she was hit. The white fur of her coat quickly saturated with red blood. She fell to the ground. There was nothing I could do to help her.

I woke and sat up. I felt paralyzed to help myself, couldn’t call out to my husband, just felt terrified and unable to self soothe. I grabbed my phone and looked up nightmares in Alzheimer’s patients. It said that some people who have terrifying nightmares where they’re being attacked or chased can be an early sign of Alzheimer’s or Parkinson’s disease. It is believed to be caused by damage in the part of the brain that controls our dreaming “safety switch”.

Somehow I did get myself off the couch and up to bed. I woke my husband and asked him to tuck me in.

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Nightmares, fear of sleep, fear of being awake… Fear that I can no longer think. Fear that I’m turning into a zombie. Fear that I can no longer comfort myself, no longer able to self soothe. Helplessness. And then the fight goes on. I’m a fighter, and I use my words to fight back. The stigma, the losses…all mount, but while I can I will hold up a mirror to myself, and I’ll hold up the mirror to the world around me.

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I hadn’t read a novel since the diagnosis, despite a full bookcase of books I haven’t read, and those I have read, I have forgotten the storyline. I’ve obsessed about this. My inability to retain. Loss of short term memory. Lost on the page.

Last week my dear friend Jeanne invited us over for dinner. Usually she comes over on Wednesdays and we play Scrabble. She said if I wanted to play Scrabble before dinner I should get there by 2:30 pm, as she needed to start prepping the food by 5pm. So my husband walked me to Jeanne’s, dropped me off and after the Scrabble game, I wandered into her dining room. On the table was a photo and article about Edgar Allen Poe and a toy raven that looked to me like something out of a taxidermist collection. Jeanne told me it was there because she’d hosted an event for the library. I was spooked. I asked her if I could go upstairs while she prepared dinner, and I climbed the stairs to the second floor. I walked into the living room where all the furniture looked so low to the ground. I felt like somehow I had grown taller, as if I had fallen down the rabbit hole in  Alice in Wonderland. I looked at the photographs around the room, her son and daughter in law and their children, her late mother and father, Jeanne’s husband, Bob’s departed parents. In the tall bookcase, I spotted Anna Quindlan’s second novel, One True Thing and took it out and walked over to the couch and sat down with it, and began to read.

I met Anna Quindlan when she lived in Hoboken in the 1980’s. We rode the bus together with our then young sons, taking them to school in Manhattan. At that time I owned an art gallery in Manhattan, and would drop my son off before I headed to SoHo. Anna wrote a column for the New York Times called Public and Private (for which she won a Pulitzer prize in 1992). I knew from her column that she had lost her mother to cancer when she was nineteen. I knew she had gone to Barnard college and left school to care for her dying mom. I knew that this novel was not exactly an autobiography, but that it contained the seeds of her own family saga, as the main character was a reporter who returned home to care for her mother who was dying of cancer. I’d never read it and yet intended to. Here was my chance. I read the whole book, and to my surprise was able to retain so much of it. It took  most of three nights to complete. I was hooked from the first page. The protagonist, Ellen Gulden, is in jail, accused of mercy killing her mother. She says she didn’t do it, and thinks she knows who did. Ellen had returned home to take care of her mother, Kate Gulden. The disease was already far advanced. Her father insisted Ellen quit her job and come home. Ellen had always been the special child of the family, the high achiever, and close to her father, an English professor. She saw herself as the one caught in the middle between her parents. Different from her mother, the talented homemaker, the family’s center – the one true thing. Yet as Ellen spends more and more time with her mother, she learns many surprising things about her, who she thought she knew so well. The life choices she and her mother made are reassessed and she sees her father as an absent figure, unable to be fully present for his wife in her time of need. When Ellen is accused of giving an overdose of morphine to her mother, she thinks her father did it. She witnessed him feeding her rice pudding the night before. He goes up to bed, and Ellen stays with her mother through the night, listening to and watching her breathe, until she takes one long last inhalation of breath. When her father comes downstairs in the morning and asks “How is she?”, Ellen replies, “She’s dead. I’ll go make the coffee”. When the autopsy reveals that Kate died from a morphine overdose, and Ellen is arrested and charged with killing her mother, and her father does not post bail, she is convinced that it was her father who did it. But she does not accuse him, and the case goes to trial. The jury decides not to indict her and she leaves and returns to New York City, and vows to never see her father again. Eight years later she sees him at a theater and they talk and he tells her, “I never blamed you for what you did. It was the right thing to do. it took a great deal of courage…”. She realizes he was not the one who gave Kate the morphine overdose. What Ellen realizes is that Kate herself had kept the many morphine pills she kept asking for to quell the pain. That her mother found a way to put the powder in the rice pudding that her father fed her that night. Ellen didn’t think her mother had it in her. How wrong she was about her mother and her father. She wonders how much of family life is “a vast web of misunderstandings, a tinted and touched up family portrait, an accurate representation of fact that leaves out only the essential truth”.

December 26, 1976 was the day we were married. Wayne retrieved the bouquet of roses from his car, smiling and hugging me. “Happy anniversary”. 43 years. He is still here. Resigned to this. The one taking care of me. Day after day. Guiding me when I do not know what to do next. Walking me through the conceptual blindness and physical weakening that has overtaken me. Urging me to get up when all I can do is lay there. Getting me started, when the switch that connects me to the world, won’t connect. Helping me down the stairs. Helping me to start the day. Telling me that he will be here. Telling me when he won’t. Giving me the courage to battle this when I’m alone. Taking me for walks. Driving me to see our children, who are for the most part,  blissfully unaware of how difficult our lives have become, because they are shielded from it. They have their own lives. There are baby grandchildren. There are their jobs and their own bills to pay and relationships to nurture. Though I wish they were capable of being more mindful, as the time is slipping away, I am aware that the situation can’t be changed.

How sad I am for him that because of me, he is the one trapped in this caregiving. This is not a life that anyone could imagine, unless they’ve lived through it. And yet though it feels like I’m near the end, the long goodbye drags on. It won’t get better. That is the reality of Alzheimer’s. It progresses. My mobility and speech have been affected for over a year. I’m still ambulatory but my balance is poor and my strength is diminished. He hears me babble and now often doesn’t pay attention. Sometimes when he hears me he says “what?” and I realize I can’t give him and answer. I’ve been absent, chattering on in a zone I don’t understand myself. He listens to me repeat the same questions. It’s obvious that he is very lonely. I can see how wearying this is. If only I could snap out of it. If only. He understands how vulnerable and afraid I am. He holds me up when he can, though it is dragging him down too. He understands it’s the disease. He laughs when I thank him and tell him that the dinner has flavor, unable to think fast enough to say, “mmm…delicious…you’ve become a marvelous chef!”. He knows what I mean. Deciphers the cryptology that is the result of my semantic confusion . There are times still when just being together is enough. He encourages me to write, to draw, to find ways to express myself. That is how he has been throughout our many years together, always encouraging, and that hasn’t changed. He is the love of my life. Despite the things that have torn us apart, the years of misunderstanding and battles, I have known love and it is because of him.

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I can still draw and I can still write. But you my dear reader know that my days are numbered, and each word and sentence is hard won. Happy New Year. I am happy that I can still dress myself and function, to the degree that I still can. I am still able to walk, although not nearly as well as I did a year ago. I’m extremely grateful that I can still read, which I know was one of my first questions when the neurologist told me the Pet scan revealed I have probable Alzheimer’s. Many with this diagnosis lose the ability to read and write early in the disease. Their loved ones plunk them down in front of the television where they watch sitcoms and reruns.

I acquiesced when he said he had to go on an errand to pick up his car that was being refitted with a new tire. Often I panic when he leaves and protest before he goes. I didn’t. I was still sitting in the same spot when he returned. He lay curled up on the chaise I bought years ago from Macys, watching movies on the tele, while I took care of myself, showered, washed my hair, clipped and filed my nails, ate without asking him to sit near me. I then joined him in the living room and watched a movie (the new Eddie Murphy comedy Dolemite Is My Name). Content to be near him. Sad for both of us but still able to share a laugh. It is what it is.

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These are old photos of my mother with me and my older sister. We’re in St. James park in the Bronx. The year is 1958. I was four and Lillian was eleven. My guess is my mom was forty four. The photo of my father appears to be taken in Gombin (Gabin), Poland. It was 1946 and his mother, father, sister and brother, had all been murdered by the Nazis. He left Poland that year with my mother and lived in a displaced  persons camp in Germany (Bergen Belsen), where my sister was born the following year. In 1951 the three of them boarded a ship for the United States.

Portrait of Caarin

Caarin is the bouyant surprise. The treasure I would have never known if she hadn’t shown up at my door last August in search of her own roots and information about her birth mother (my sister). I wish I had met her when I was was well, but at least I met her when I could still share with her. As a result of our meeting she has met her birth father, his sister, a half brother, and knows about her birth mother and her family. She has met my daughter and my son and spent time with our grandchildren, with my husband. She has taken me to museums and programs in New York. She and her husband have cooked dinners for my husband and I. She’s spoken about her adoptive mother Carol, who died three years ago, and who I believe raised her to feel loved and cherished. I am eleven years older than her. I was eleven when she was born. I am her aunt. I’ve met her children, Jasper and Charlotte. Maybe Caarin will write about all of this someday. I asked Jasper to videotape me. I told him about his grandparents, his great great grandparents in Poland and Russia. I sent him photos. He resembles Menachem Mendel Gershanovich, his great great grandfather.  I’ve sent him links to my films Back to Gombin https://vimeo.com/124443430 and The Lilliput https://player.vimeo.com/video/91234297

History is always disappearing, but for some reason Caarin found me. Maybe Jasper will tell the story about how his mom found out about her birth family and in turn his own links to a past he would never have known about if Caarin had not been the fiece detective she is. Maybe he and my daughter Mimi will meet and make a film someday about this. Or not.

Portrait of Jeanne

Jeanne has been coming to our home on Wednesdays for the past two years. We must have played over a hundred games of Scrabble. I’ve joked that my epitaph should say, “Alzheimer’s Scrabble Champion”. My husband said isn’t that an oxymoron? I think she’s beat me twice in that time. She’s getting to be an extremely good Scrabble player, and I suspect my reign will be short lived. She is a vegan and a foodie, and brings delicious soups and meals prepared in her kitchen every week. This kind gesture gives my husband a break one night a week, since he is still working, and driving many hours three days a week, and taking care of me, which includes preparing all our meals, as well as just about everything else to keep a roof over our heads. Jeanne and I have talked about our families. She’s listened to me go on about my illness, my fears, and she has stood by me as a patient friend as my symptoms have progressed. She’s told me about her problems with sleep, and how she tries to maintain a sleep schedule. She has talked about her aging friends, about their trials and tribulations. A friendship that began two and half years ago, a month after I resigned from my twenty years of teaching art and art history, has grown and sustained. When I met her,  I had been walking to shul for Rosh Hashanah and stopped to rest on a bench in the park. As she passed I called out to her and asked her if she wouldn’t mind walking with me. I hardly knew her then, but told her I wasn’t well, and took her arm. When we left the service that night, she walked me home, and I told her about the diagnosis. Since then she’s remained steadfast and taught me a lot about what means to be a friend.

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Julie! I have a friend in Alabama, that I text with every day, that I’ve never met in person. Her diagnosis is a mystery, maybe Lewy bodies that has progressed. We commiserate about our symptoms in texts. I’ve spoken with her once on the phone, about a year ago. Since then she’s developed some aphasia and says she writes better than she speaks. I rarely speak on the phone now either, so we hold onto our ability to communicate through texts. We send each other photographs, selfies, pics of our kids and spouses. The illness she has often exhausts her, yet she rallies. We compare our lives and have learned that two woman from such different backgrounds, such different life stories, can bond through illness and the fight to survive. We joke about our losses. I ask her if she has eaten dinner. She said she will have to ask her husband who is outside. I say, “You don’t remember if you’ve eaten?”. She said, “I don’t remember sh-t!”. We’re like a seesaw, balancing each other by remaining in touch, helping each other by understanding how things that were simple are now very hard to do, encouraging each other to keep living and enjoying the little things. She’ll send me a photo of herself eating chocolate! Our moments shared make us both aware that we’re not alone in this journey.

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So why do I feel so alone? Because so many others I considered friends have not called or written,, making me feel like I am a leper? The stigma about Alzheimer’s is when my ire is raised. When the negative emotions threaten to annihilate all the good. The former director and founder of the school in which I chaired the department for twenty years – not a word or a call. She lives seven blocks away. My high school friend. I wrote a eulogy for her mother when she died. I taught her how to make etchings and prints. I nurtured her back to sanity when her lunatic boyfriend killed himself with a gun he had hidden in their apartment, when she was living with him in Canada. I was a good friend then. She knows my diagnosis and initially stayed in touch. Then nothing, not a text in well over a year. I read her effusive Facebook posts. I know that her only child, her son got married. I think if the situation were reversed I would have stayed in touch with her. The cousin who I housed when she had no where to live. Laughed with. Nurtured. For years. The artist girlfriend who used to live nearby who I’ve known since our sons were little and played together. Gone. I click like on her Facebook page in response to the ethereal images of her paintings. What am I going to say? Wish you would visit? Wish you would write to me?  It’s when I focus on the rejection that the sadness and loneliness and the pathetic “poor me” of this disease make me feel so much more defeated.

Josie Rubio an editor and writer wrote a long running blog during her battle with cancer called A Pain In the Neck. She died at the age of 42 last month. I read her whole blog and found her wry humor and honesty incredibly relieving. She said things like, “dying as it turns out, is incredibly boring”. She said it so much better than I can in her post called Deathbed Tourists http://apainintheneck.com/2019/10/22/deathbed-tourists/ she wrote about friends that abandoned her – Why am I so angry? Why am I wasting my precious time worrying over these people? Why do I turn my thoughts over the people I feel hurt by: friends who have turned, people who have said I’m like family then ditched me, people who I’ve felt abandoned by? I need to let it go. But as Kim Gordon of Sonic Youth said of her ex, Thurston Moore, “You can’t really forgive someone if they don’t say they’re sorry.” According to Gordon, the Dalai Lama said you don’t need to forgive if you have empathy for the person. I don’t understand these people though. Yet I’ve thrown so much shade, I’m sitting in the cold. I want to be in the sunshine. Is that a selfish reason to want to forgive? Is it any worse than being like them, wanting to appear kind in the eyes of others by pretending to feel something other than contempt for me? I call them Deathbed Tourists. My illness is a backdrop. It’s so sad that I’m dying, but it’s definitely my fault that our relationships ended. Isn’t it? 

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Of course, I am angry, furious that I got a disease that is worse than cancer because it has impinged so starkly on my ability to get out of my own way and simply live my life.

What I fight is that this disease is seen as a form of mental illness, which it is not. It is a physical illness – it’s neurodegenerative, and affects the brain and body. It is misconstrued as a mental illness, wherein fact it is a medical illness that disrupts the way the brain works and so affects the body and the mind. It plays havoc on the emotions because emotions are hard wired in the brain. We use hearts as emojis but the physical heart does not rule our emotions. It’s all in the brain. Alz is a terminal illness and in many cases the younger the person is when diagnosed, the faster it progresses and the pathology can be extremely aggressive. But I was never a quitter, even though this is not a battle I can win.  So far I have chosen to fight this with all I have left, and take what this tyrannical disease is throwing at me.

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That’s not to say I haven’t cried. Today I broke down in Pamela’s office. Couldn’t hold it together and it felt good to just cry. Because I am sad and angry doesn’t mean my spirit is weak. It was a rough day. The yoga teacher quit. It was helping with my strength and mobility. I will need to find a way to keep moving, to keep walking, to find my inner and outer balance in different ways.

Bill Lyons, the great sports writer, died of Alzheimer’s and Parkinson’s disease wrote a column about being held captive by “Al”. Four years after his diagnosis he revealed it was taking away his ability to construct paragraphs and sentences. “But I am trying”, he wrote.

I don’t want pity, but I do want understanding. I’m weak and strong. I’m scared and brave. I’m damned angry that I got this disease and I fight it and I cry.

I didn’t think I could write this post after not being able to write for a month. I am having a hard time finishing it, can’t find the words. But I am trying.

Statue of Christopher Columbus (Italian explorer who opened the New World for conquest and European colonization)

Drawing of my husband with his eyes closed – November 2019

I had a dream that I was normal and didn’t have Alzheimer’s. I saw myself walking normally, happy, laughing, and not at all impaired. Just the woman I used to be. Sociable, gregarious, not agitated, not depressed. In the dream, I was in a large festive bar and met a man, a robust fellow, who was very enthusiastic, friendly and full of life. I looked for my cousin Joyce to introduce him to, and found her and invited her over. She was just like I always remembered her to be, full of life, cracking jokes. She was glad to meet him. The only strange thing was that as he spoke to her, she started to levitate. He was very tall and she is short, and somehow his gaze made her rise up to meet his height, so they were face to face. Yet even that seemed pretty normal until I woke up and realized it was a dream.

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I didn’t want to spend Thanksgiving alone with my husband at home. I wanted to see my grandchildren, although I was nervous about being with extended family (I’m at a point where I’m very sensitive to sensory overload) . I wanted to be with my four year old granddaughter and the twin grand babies, who are now just over a year old. They change every week and are growing fast. We hadn’t seen them since our granddaughter’s birthday party at the beginning of November. Sara was just starting to walk then and Michael was crawling and pulling himself up on furniture to stand. Now they are both walking and picking up toys and exploring. They are both adorable and it’s exciting to see their growth and developing awareness and unique personalities. I snapped photos and followed them around as they toddled from room to room.

For days I was concerned about getting agitated at this dinner, because when I am around a large group of people that is what often happens. I’ve become so self conscious about how much I’ve changed. It’s hard for me to follow conversations when there is more than one person speaking, but in this case, they speak Russian (which I don’t understand at all), and switch back and forth to English. I didn’t want to be sitting there with a dumbfounded look on my face, feeling lost and alone.

At our daughter in law’s request, my husband prepared an outstanding mashed potato dish, turkey stuffing, fruit salad, and bought a berry cake. Our son’s company gave him a turkey, and our daughter in law baked it. Her mom and step father brought Russian salads and smoked salmon with crepes. It was a cuisine of blended cultures and everything was delicious.

I was relatively at ease, which means I was talking and commiserating. Everyone enjoyed the food. Since our daughter in law’s step father had been ill with what appeared to be symptoms of a very bad cold or flu, the extended family left soon after dinner and clean up. My son retired to the piano room and began playing a Chopin nocturne and baby Michael, who loves music, walked over to the piano bench and swayed responsively to the music. My son is kind of quiet but when he plays piano he communicates through his higher self.

Sara toddled over and gave me the sweetest dimpled smile. I found a place to sit amid the piles of coats and books stacked on the settee. Ellie pranced around in her pink princess Aurora dress. She tossed a ball high up into the opening in the atria and beckoned to me to play catch. Then our daughter in law called out to my son from the kitchen, that it was time to put the twins to bed. The last time I was there, I went upstairs with my son when he got Michael ready for bed. I thought it would be okay to do that again, so I gingerly followed him, carefully walking around the piles of clothes and shoes stacked against the stairs. We went upstairs to the bedroom with the twin cribs, and I went to sit down on the rocker. Then my daughter in law called from downstairs to my son, “make sure you cover the rocker before she sits down”. He dutifully unfolded a diaper pad and placed it on the chair. My sense of smell has become particularly acute, and the perfumed synthetic smell of that diaper pad, a large piece of blue plastic with fuzzy cotton backing, wafted up my nostrils as soon as I neared the chair, and it bothered me a lot. I didn’t think it would be a crime if I sat in that chair without that diaper pad. Okay, I was wrong to remove it and sit down, but what followed was outrageous. My daughter in law stormed into the room and started screaming at me at the top of her lungs, and threatened to throw me out of their house, because I sat on her nursing rocking chair without this cover. My husband rushed in and demanded I come  downstairs and said we have to leave. My daughter in law followed, continuing to berate me, saying her grandmother had had Alzheimer’s and didn’t behave like this. I said “your grandmother was in her 90’s and no, she didn’t have Alzheimer’s, she had colon cancer”.  I said “you are so concerned about my sitting on the rocker with my street clothes, but not concerned that your step father has the flu, and has been coughing near the babies all night”.

Anyway, a nice Thanksgiving dinner ended very badly because I disobeyed and sat on my daughter in law’s rocker with my “street clothes” (as if I spend a lot of time on the street). She made me feel like a leper. I was shaking in the car on the drive home. I couldn’t quell the agitation. i was whining and chattering away and my poor husband needed me to be silent so he could focus on driving in the dark.  I texted my daughter in law and expressed my dismay at her wrath. She wrote back, “sorry I screamed at you, but you shouldn’t do things that will make others upset, because you feel like it. Whether you are dying or not is not an excuse!”

I texted her mom and explained what happened. She is much more level headed than her daughter, obviously, and wrote me, “she is under a lot of stress between three kids and a full time job”.

I don’t meet her expectations now that I have this nasty affliction. I suspect I never met her expectations. Sitting quietly and withdrawing into my phone is not okay. Because I move awkwardly and I’m slow, it’s impossible to play vigorously with the children. I even have a very hard time squatting now and then standing up. Daughter in law took offense that I followed the babies around snapping photos rather than playing with them. I can’t seem to do anything right. My confidence plummeted.

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Is it fair to expect others to understand that it’s the disease that has caused me to change? Before they were married my son and his soon to be wife lived in a separate  apartment upstairs in our home. I was healthy then, working and often shopping and cooking. I’d bring them bags of groceries and treats. I’d cook for them. I was always generous and aimed to please. I introduced them to my (then) friends and colleagues. That was only five years ago. Obviously the illness I have has taken a toll on my functionality and has changed me radically. The progression has been fast. I retired from teaching only 2 and 1/2 years ago, pushing myself to continue as long as I could. At that point I was was walking normally and had no verbal impairments. What was obvious to me then was that I could not function with impaired memory. If I put something down on a surface, my coat or my books or art supplies, I would immediately forget about it. I could not track my belongings or materials I needed for teaching. I was forgetting students names. The progression of the illness was accelerating, and the stress to keep up was intolerable. So I retired and my husband marched me down to the social security office where I applied for Compassionate Allowance Disability due to Alzheimer’s. Some people progress rapidly and unfortunately I am one of them.

It’s been 2 and 1/2 years since I retired. Initially I was able to go the gym several times a week, and remained active. I could still walk for miles then. About a year ago I began having problems walking. My balance became affected and as I walked, I felt a distinct sense of gravity pulling me down. It became harder to stand up from a sitting position. Motivation to move is affected and the previously natural inclination to get up from my bed and start the day requires pushing myself very hard. Along with this I have developed symptoms of aphasia. Not only has the sound of my voice changed and sounds metallic to me, childlike and tinny, but the order of the words I hear myself speak, are often disordered. I’m not sure when the babbling started exactly. Perhaps it was a year ago that I began to hear myself say things that made no sense at all, as if an alien had invaded my brain. Streams of words that have nothing to do with conversation would erupt as I sat with my husband. I began to narrate my actions out loud as I did things like wash a dish or a cup (“now take the sponge and put soap on it and wash the cup, dry it and put it away”). My husband would tell me I was babbling, and I would apologize and say I would stop, and less than a minute later I would be vocalizing again, sometimes coherently and sometimes incoherently. Now I notice when I write with a pen, letters in words are sometimes missed, and I need to correct as I write. The act of writing is obviously important to me. If my speaking is impaired and writing is challenged, then I will not be able to communicate.

Now I spend the bulk of my time alone. My husband is quiet, a reader and often withdrawn. It’s an effort to remain engaged. The fear I have of becoming that empty shell of a person I have seen at the programs, people who have become mute, is ever present. Is it realistic to pray I do not last long enough to become that?

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People who have Alzheimer’s disease are extremely sensitive to body language and spoken language, and may easily react with anxiety to a frown on your face or tension in your voice. There needs to be an awareness of their reaction to your moods.

Please read this PDF called Understanding the dementia experience http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

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I don’t know how long I will last with this disease but I am sick of it. I can’t do the things I used to do. I used to single handedly throw dinner parties for a dozen or more people preparing all the food from scratch, while I was still working full time. Now, I’m a prisoner of my brain and body, my broken vessel that has forgotten how to cook, how to entertain, how to do so much. Just getting up from bed and putting on my robe, and walking down the stairs is a sequence of steps I have to do carefully, and with effort. I lay in my bed for hours in the morning, unable to get started, to get up and start the day. Now that the winter is almost here, I get cold so easily and my body is becoming stiff. My sleep is fragmented. I fall asleep for a few hours, wake, and then sleep again for a few more hours. I haven’t had 7-8 hours of consecutive sleep hours since 2015. When I wake my hands and feet are often numb. No feeling at all. i move them and try and wake them. It takes time to get the feeling back in my extremities. Muscle twitches ripple inside my thighs and back. My right leg often shakes uncontrollably.

I have to set my clothes for the next day on a hanger and bring them downstairs, no matter how late it is when I get to bed, or else I won’t be able to get dressed the next day.  I’ve forgotten how to get dressed in my bedroom the way I used to. I know that must sound odd, but it’s not part of my routine anymore and so I’ve forgotten how to do that. It would be new to me. I’d have to learn or relearn how to do that.

So the night before I have to set the clothes on the hanger. The pants go into the hooks, the socks between the bar and top of the hanger, my underwear hangs around the handle, and the hanger is hung on the bathroom hook inside the door. This is where I get dressed every day. Each article of clothing is assembled in the order  I have to put each item on my body.  When I’m finally through my morning routine (make the tea, write the list for the day. check the date on my iPhone calendar, I sit and do the New York Times crossword and mini crossword puzzles on my iPhone and redo the ones from each day from the previous 7 days to see if I can remember the answer to each clue. Then I take my thyroid meds with my tea. I eat a banana and then do fifteen sit ups on the anti-gravity table. I drink a cup of coffee and do a round of Lumosity cognitive games, trying to attain at least a somewhat comparable score to the day before. I then wash the coffee cup and dry it and put it away in the cabinet and then venture into the bathroom and talk myself through the process of getting dressed, groomed and ready. I recite out loud, “First the right leg goes through…, then the left leg…, then pull them up. Take the shirt and pull the opening over your head. Then the left arm goes through the sleeve, then the right arm goes in the other sleeve. pull the shirt down… Then sit down and put the socks on. First the right sock and then the left sock. Then put the shoes on.” It’s exhausting to have to remind myself to think of each step, maddening to have lost so much of my executive function. Frustrating that I have to do the same thing in the same order to get dressed. I do this every day. Everything I do is in steps, and it’s slow going. I am sick of it. Have been sick of this procedure, this groundhog day, this adaptation, this insanity, for a long time. I have a typed sheet which details these steps taped above the sink in case I get stuck and can’t remember what goes next. This is how I am able to function, the way I am able to get dressed “independently”. No, I never had OCD when I was well. I would just do things spontaneously. I would get up, take a shower, get dressed, have breakfast and head out the door. I would not have to THINK about it.

This is a photo I took on one of my walks with Theresa after Halloween.

 

I keep the printed programs from Moments at Lincoln Center, so I will remember what I saw and listened to. This is a photo of an ensemble of violin and viola players who are teaching artists through the New York Philharmonic. I attended the program titled Kaleidoscope, with Jeanne on Monday, November 18.  The string quartet played movements by a contemporary composer, Gabriela Lena Frank and movements composed by Antonin Dvorak, the Czech composer who employed rhythms of the folk music of Moravia and his native Bohemia absorbed into a symphonic tradition.

I often see people I have met at these programs, people with their care partners. I usually go over and say hello. Sitting in front of us were Paul and Maureen (who was diagnosed with Alzheimer’s). She recognizes me but has little to say except hello. At the end of the program I go over and say hello to Fred and his wife, who I met a year and a half ago at The Alzheimer’s Association in Manhattan. She was helping him put on his coat and scarf. I ask her can’t he do this by himself. She says it’s just easier to help him. I think of the way I force myself to put my own clothes on, how I struggle to get my own coat on and zip it, and how my way of doing things is not easier, but I find it necessary in maintaining a semblance of independence. I go over and say hello to Milton, who I met previously. He was diagnosed with Lewy bodies. He told me he frequently travels alone from Brooklyn to meet his brother in Manhattan. This time he was with his daughter, and I introduced myself. I sensed her unease when I uttered the words early onset Alzheimers.

Milton and his daughter in the after program

After each concert or program people with dementia and their care partners of companions are invited to go to classrooms for discussion, music and art making. In the spirit of multiculturalism, we were shown a map of the world and given a pushpin to stick into the location on the map where we were born, or a place that our ancestors came from. I looked at New York and saw that there were already a dozen or more push pins in and around it. No room for mine. So I looked for Poland, where my late father was born and raised, and where I lived as an American Fulbright. I looked for Warsaw and Lodz, and pushed the pin into Lodz.

After the program, I called my dementia buddy Tim on my phone, from the lobby. We’ve been having zoom chats on Monday’s at 3 and since I wasn’t at my computer I couldn’t chat with him. I observed a woman pacing around near the elevator, and when I got off the phone with Tim, I approached her and heard her speaking to herself. Her speech was  not reality based at all. I noticed that she was wearing a light fleece jacket and thin pants, not at all like the long down coat her aide, a glamorous died blonde with painted on eyebrows and a Russian accent, had on. As we rode down the elevator with them, I mentioned to the aide that this woman did not look like she was dressed right for the weather (it was a rainy and cold day in New York). The aide looked at me and said, “Oh she always shakes”. Once we were on the street, Jeanne called for an Uber to pick us up. I watched as this woman shuffled along shivering next to her aide, who had by now pulled the fur lined hood of her luxe ultra down coat, up on her head. I was helpless to do anything to help this woman, but I felt sorry for her. She was not being cared for properly by the aide. She was shivering. That night I wrote about this woman and her aide on the AlzConnected, online forum. To my surprise and consternation, someone I had met on an online dementia Zoom chat, a woman who initially said she had been diagnosed with mild cognitive impairment, but then claimed she was diagnosed with Alzheimer’s, wrote in answer to my post, that if she had seen this shivering, babbling woman underdressed, and noticed the aide was not taking proper care of her, she would have followed them and called the police. I thought about this, thought about how slowly I move. I pictured myself following them and calling the police and getting arrested for harassment. I imagined the New York police responding to such a call (as if they would), and my trying to explain that this was elder abuse. In the best of all worlds this action would have been a wake up call for the aide, who is being paid to take proper care of a person with dementia, to do her job. But this is the real world and it’s New York City where homeless people are wearing plastic bags over tattered coats to keep warm and dry. That this woman with dementia had an aide who was accompanying her meant she was cared for. Obviously not well cared for, but I’m not equipped to change that besides pointing out to the aide that this poor woman was shivering and should be dressed in a winter coat and warm pants. I was upset that the woman I met on the zoom chat who responded to my post, didn’t get it- could not perceive my  own helplessness because I too am impaired. I felt so misunderstood because I tried to have an effect. I did speak to the aide, and told her i thought the woman wasn’t dressed for the weather. I planted the seed. it’s all I could do and the woman responding to my post criticized me. Instead of defending myself, I deleted the entire post, her words and mine.

I can’t save anyone. I can only observe and I can  speak, but I can’t force someone to take better care of their charge. I can barely take care of myself.

So in the spirit of “there before the grace of G-d”, I’ll give thanks for what I do still have. A roof over my head, warm clothes for the winter, my sweet, cute and sad husband who takes care of me now and has become a great chef out of necessity.

 

My daughter bought me these warm socks with hearts on them. So thoughtful. I love her so much.

A message for Greg; you said I lift you up. That’s funny because I’ve actually become the Debbie Downer of Dementia! https://www.youtube.com/watch?v=wZ1AjaNjack

You have rose colored Alzheimer’s glasses my friend. Maybe it’s the Prozac? Nah! It’s your soul, dude. You have faith. I look to you to pull me up when you fall.

Why in the world would I take a photograph of an empty park bench?