Portrait of Mimi and Dan

Professor Alzheimer’s here. Yes, friends, there has been a load of progression in the past weeks since I last wrote on March 15. That was almost four weeks ago. I used to call progression step downs. A step down to a new level of disrepair  with decreased motor function, but coming back to writing is a step back up. Which is why it’s important to keep writing. It means I’m taking a personal and public inventory. Tracking the changes in myself. Aware. Reading. Learning. Sharing.

I still use  photographs to keep a record of what happens each day, although a lot of the pictures appear to be more and more repetitive, just from different angles and vantage points. Photographs from my walks look haunting and dreary to me. I liken taking these to purposeless activity, but I do know I take them to see if I walked outside on certain days. I do read the news, the New York Times, everyday. How much do I retain – probably a little.

Although walking is not easy for me, and sometimes I wobble and veer a little to the left and right, I take walks in this small city, the smallest in the US, in one direction or the other. I go slowly. People pass me. I am cautious not to fall. North, South, East and West. When the synagogue facade appears in a photograph, I know I’ve made it to First and Park Street. When I see the viaduct or the sign for the restaurant called Carpe Diem (which I remember is Latin for “Seize the day”), I know I’ve walked to 14th Street. Photographs taken in Manhattan mean it’s a special day. An outing. It can be a trip to the Rubin museum, or less often to other programs like attending a program at Lincoln Center, which I went to with Jeanne last week. Then there are the family visits which I cherish. The visits to our son and daughter-in-law’s home and seeing our grand babies. Finally, we did visit our daughter and her boyfriend in their new apartment in Manhattan, and I photographed them and took pictures (and later on the roof). Making the drawing (above) was aided by a photograph I took of them on the roof as we looked out in all directions over Manhattan. They live right next door to the United Nations. When we were on the roof,  I walked towards the parapet and stood looking down. I thought I recognized an outdoor sculpture by the late Japanese artist Isamu Noguchi. But when I researched the piece, I learned that it is a monumental Barbara Hepworth sculpture (in summer it is in a pool in front of the 39-story United Nations Secretariat Building, but now the pool appeared to be a circle with wavy lines).

I knew some of her work, but researched Hepworth (1903-1975) more deeply anyway. I knew she was an English artist and sculptor. But I read that towards the end of her life, she took sleeping pills and smoked cigarettes, and that fatal combination was the cause of her death at age 72, when she fell asleep and her bed caught on fire.

To the left of her sculpture (Single Form, 1961), I instantly recognized the Henry Moore (1898-1986). The sculpture is of a reclining woman (Reclining Figure: Hand). Moore was an English artist, best known for his semi-abstract monumental bronze sculptures which are located around the world as public works of art. He is considered the foremost British sculptor of the 20th century,  with commissions all over the world. Seeing these two sculptures, in no way eclipses the United Nations building itself, which from my angle looked like a giant computer mainframe. The building (the Secretariat), and the United Nations were created to maintain international peace and security, develop friendly relations among nations, achieve international co-operation and be a center for harmonizing the actions of nations. It was intended to have great world significance! In 1946, Winston Churchill intoned, “A world organization has already been erected for the prime purpose of preventing war.  We must make sure that it is fruitful, that it is a reality and not a sham, that it is a force for action, and not merely a frothing of words, that it is a true temple of peace”.

Yet there have been 80 wars between the UN’s founding in 1945 and the end of the Twentieth century, and dozens more this century. It’s not fair to blame the UN for the fallen nature of man, but it’s fair to blame the UN for failing to live up to it’s own mission.

I had a birthday on March 28 and I turned 65. It’s been two years and eight months since the first diagnosis when Dr. Noble ordered a Spect scan at Columbia Presbyterian Hospital and it then showed diminished blood flow to my parietal and temporal lobes, the pattern of early Alzheimer’s disease. It’s been two years and a little over 2 months since Dr. Wiesniewski ordered the FDG Pet Ct, at NYU Pearl Barlow Center for Memory and Evaluation. It showed hypo-metabolism of the same lobes, the pattern of Alzheimer’s. It’s no longer early stage. That’s obvious to me. Everything has changed now. It’s been hard to walk any distance over 2 miles. My speaking sounds and is different. The babbling has increased. Nonsensical speaking. I talk to myself in circuitous sentences and give myself directions to do the simplest of things. My crazy brain is off on it’s own now, making my mouth and vocal chords respond to synaptic dysfunction. Of course, I do not do this in public. These monologues are private, but not here. Here is where I tell it like it is. I am not this monster. It’s a disease. Happy Birthday to me.

We went to my son’s home last Sunday to celebrate my birthday and brought a chocolate mousse cake. I knew that my 3 and 1/2 year old granddaughter would like blowing out the candles with me. I pictured what 65 candles all aflame would look like, but I asked for 11 candles, adding 6 and 5. The photograph is of the cake and I’m standing with Ellie, about to blow out the candles.

Jeanne wanted to take me lunch for my birthday. We didn’t go. Instead I asked her to go for a walk with me on Washington street, the main street. That would be her gift to me. I told her stories about the people and stores and things that happened over the years. I pointed out the house where we lived when my son was born. We passed the pizzeria famous for the largest slice, and I told her about how I would watch Benny, the owner from my window across the street, thinking he looked like Giancarlo Gianini, as a young Italian movie star. I told her how Benny was indicted for smuggling heroin in pizza canisters, and how he went to prison for 15 years. For years before he died, he  used to sit outside the pizzeria after he got out of jail. He was a fat smiling old man shmoozing with the customers, and then he died at age 77. Prison and all that pizza and he still got to live to 77.

We continued walking South down Washington Street, and went into Anthropologie, the clothing store where I used to love to shop and try on clothes. I hadn’t gone in there in well over a year. I showed Jeanne the layout of the store and took her downstairs to show her where the sale items and racks are displayed. My memory is okay and my orientation is pretty good, but walking down those those stairs at Anthropologie, I felt so wobbly, and held onto the bannister. For me the physical manifestations of Alzheimer’s feel more daunting than any other losses. I wonder if this is the vascular part of the disease, or if this is only Alzheimer’s, but also Vascular dementia. Mixed dementia likely.

I used to love to try things on in the dressing room at Anthropologie. I couldn’t do that now, Just dressing myself from clothes I put on the hanger every night and hang on the hook in the bathroom, requires so much physical coordination, planning and memory. The days of tossing my clothes onto a bench in the dressing room and trying on item after item, checking the fit in the mirror, making the choice of what to buy and what didn’t suit me, are gone. I’m lucky that I can still dress myself. Some people who have Alz need help with that. It’s disconcerting to my husband to hear me giving myself instructions…”put your left foot, though here. Put the right one through this pant leg. Put the shirt on now, and pull up the pants. Put the shirt over my head. First left sleeve then the right, but I’m glad he doesn’t have to dress me. Hope I never get to that point.

I thanked Jeanne for my “birthday walk”, and for spending extra time with me.

April 9, 2019- My son Soren’s 37th birthday. I sent him a text yesterday morning saying Happy Birthday, and also sent a photo of an artwork that is a photo with drawing made by an old friend in 1983. In the image we’re in Palenville, New York, which is near Woodstock. I was 29 and Soren was just over a year old. I also sent this to his wife Elina and to my daughter and husband.

My son, Soren, is a father of 6 month old fraternal twins – Michael and Sara and a 3 and 1/2 year old daughter, Ellie. I am glad that my daughter Mimi, comes with us to visit them. She’s a loving aunt and I see that it’s the babies, the next generation, that will keep her close to her brother and his family. She is in now in California on a trip with her boyfriend. We all stay in touch by text. I think she’ll be back in a around a week, but have no idea when I will get to see her.

I used to say Soren was our Passover baby. Sometimes Passover would fall on his birthday. This year it’s later in the month. This year it’s April 19 – 27. I used to be quite observant, and would remove the chametz (leavened foods) from our home. I would always have matzoh here during this holiday. I would be the one to prepare the seder, the ritual feast that begins the holiday. I can no longer cook and shop by myself, and there will not be a seder here. Sad. Last year my son’s in laws had a seder in their home, and my husband and I attended. I was already well into the disease, and was apprehensive about how I would present to others. I have no idea if they will be hosting a seder this year. While it is quite hard for me to travel and be with crowds of people, I still want to partake in this ritual and be with family. Our daughter usually goes to her boyfriend’s family for seder’s now. We shall have to see what happens. The last time I had a seder in my home was in 2014, before I got sick. It was just after my son’s wedding and it was a joyous time. Photos from that time  show us all together laughing and celebrating. One never knows how precious the moment is. Carpe Diem. Seize the day. .

My life is very limited now. I have routines to get through each day. In order to dress myself, I put my clothes on a hanger every night before I go to bed, and carry them downstairs with my shoes, and hang them up in my bathroom. Now that the weather is getting warmer, I get confused about what to put on the hanger. On Monday it was over 70 degrees and the long johns and pants that were on the hanger, were too warm to wear. Eliminating the long johns was confusing, but got done and I managed it myself. Transitions like the change of season throw me.

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My sleep patterns have changed and I fall asleep while I am sitting on the couch at night after dinner. I fall asleep for short intervals, while I’m reading. It’s like falling into an abrupt coma. Then I wake and see that I am laying on my iPhone, and grab it to become reoriented. Minutes have gone by.

A BAD DREAM:

Last Sunday night I was sitting on the couch with my computer and writing. It was already 3:30 am. My husband came down the stairs and alerted me that I had to get to bed. I concurred and went through the routine of writing the list for the next day, brushing my teeth and taking off my makeup, Taking the tea, my robe and phone upstairs, and setting up my clothes for the next day. Then I climbed into bed and immediately fell asleep. I fell into a dream, actually a nightmare. I dreamt I was in our living room, and there was a big purple Donghia couch, the one we had before I was a Fulbright in Poland, the one I threw out when I returned, finding it ripped and tattered from the cat’s claws. In the dream, my husband was in the kitchen, and I was standing behind the couch. I heard someone frantically trying to get in through our locked front door. I alerted my husband. But then I knew who it was. I knew it was my mother. My mother was frantically trying to get into my home. I woke up and remembered my mother is dead. The dream felt so real. Realer than the life I am living now.

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Meeting Bill and Beth at Lincoln Center

The program at Lincoln Center that I went to with Jeanne is part of the Accessibility programs for people with dementia in New York City. A performer named Imani Uzuri, led a large group in song, mainly Christian spirituals from the deep South. I was surprised that this was the program, expecting a more seasoned performance, and surprised that so much of it was interactive, since so many of the people were in later stages of dementia, like the woman sitting in a wheelchair with a blank stare and a large stuffed animal in her lap. The singer was expecting many of us to know the words to songs I had never heard. Many of the old black women in the audience were familiar with the tunes, but I wasn’t. I think those old black women, are just old, and the care they receive is because their bodies are shot, not their minds. Such a stark contrast to those who are in moderate to late stage Alz. No comparison.

Before the program began, I noticed an attractive woman accompanying a neatly dressed nice looking middle aged man, sitting in the back of a room, which was mainly filled with much older people with their companions or home health aids. There were walkers and wheelchairs, and about a third of the people looked like they were in the later stages of Alzheimer’s disease or dementia. I was curious about this man, and introduced myself to Beth, his companion. She told me that Bill is sixty and has had Fronto Temperal Degeneration for nine years. He had been a physician at Mount Sinai Hospital. He doesn’t speak much at all, although I saw him stand and ask (or indicate) to Beth that he wanted her to move her backpack about an inch on the chair. She did this and he was satisfied and went back to his seat. I told Beth my story, about my Alzheimer’s diagnosis, and I told her about my blog. She was very receptive and wrote down her email address. She told me about Bill and how he is very OCD (Obsessive Compulsive Disorder)  and I was struck by the commonalities I share with him. Beth told me that he plays Lumosity games obsessively on his iPhone. I glanced over and saw him engrossed in his phone. After the program, I rode down the elevator with them. I turned to him and spoke, telling him I heard his story, and that I have a lot of respect for him. He seemed to understand, looked directly at my face as I spoke, and seemed to appreciate what I was saying, but he said nothing. We were led to a large classroom, and I took a seat next to Jeanne. We sat in a large circle and I looked around. These people were really impaired. Some who spoke were saying things that were unintelligible. Some were silent. I smelled the contents of diapers. I was really alarmed by that. The discussion centered around creating a mantra, or coming up with words for our reaction to the musical program. The leaders were two very young women, perhaps volunteers or art therapist trainees who work with people with dementia. The caregivers were the most engaged. Tables and chairs were set up to work with construction paper. On the table in front of each chair were a few markers, a small package of model magic clay and a flower. To me this reeked of nursery school. Beth told me that Bill does not like to touch clay or art materials. I also hate getting clay or viscous materials on my hands now. In defense, I pulled up some of my drawings on my iPhone and showed them to the young volunteers, emphasizing that I wasn’t interested in “playing” with Crayola markers, model magic, or construction paper. One of them asked if I was a caregiver.

By this time Bill had gone to sit outside the circle and was on his iPhone. I assumed he was playing Lumosity. Beth said he does not text. She said he lives alone, but has 24/7 caregivers with him, meaning someone is always with him. I would so wish to speak with this man, and hear his voice and thoughts. Beth wrote to me the following day, and said she’s spent an hour reading my blog, and found it beautiful and tragic. Not unlike other caregivers who have written to me, she said it gave her insight into what Bill must have gone through in the earlier stages of his disease. This got me thinking, how very much my symptoms are like FTD, with the behavioral manifestations, the OCD, the rigid routines he follows (like me, he eats the same things every day). The main difference, sadly for me, is that Bill does not appear to have any motor impairment. I watched him walk and noted how normal his walking appears. In contrast, the people with Alzheimer’s were either shuffling slowly with stooped postures, or in wheelchairs. I am experiencing what the neurologist called mild dis-coordination. It certainly does not feel mild to me.

My experience of this illness is that I am in and out of lucidity. Is it just a cardinal or one of my parents coming to help me transition? Is this a delusion?

 

Jeanne in her kitchen last week or was it two weeks ago?

Old Hoboken. This sign has been there as long as I can remember. There must be some really great stories about that hotel and what went on there. The original Hotel Victor was opened back in 1916 and named after the owner’s son. The hotel’s main customers were ship workers traveling from Europe to work in New Jersey’s shipyards. In the 1920’s during the era of prohibition, the basement of the hotel was a Speak Easy.

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I passed two former students playing tennis in the grounds of the park. I recognized them and as I passed one of them recognized me, and spoke to the other. “That’s Mrs. Packer”. Heaven forbid he should say hello. He looked at me quizzically and I sensed that he was told I have Alzheimer’s. The other students parents know my story and he and his brother have seen me on the street, but do not say hello. They see me but their response is to withdraw. I taught both of these students sculpture and art history. Maybe it’s my paranoia, but I don’t think so. I sensed it. Stigma. I know how stigmatized this disease is.

Just say hello to me when you recognize me. I will not bite.

I wonder if my story will be woven into the tapestry of Hoboken history. The wonderful teacher who raised her family here, and was an integral part of the community from 1979 until …..she came down with Alzheimer’s. Will I be thought of as the imperfection in the tapestry? Will that be how I am remembered? Will I be remembered?