It’s getting somewhat harder to think and write, but I’m the Alzheimer’s trooper that carries on with my stream of consciousness writing, attempting to make sense of a world in which I get confused.
Fortitude. Fragmented thoughts. This is an illustration of what of what my mind is like now.
Every day that I am able to put my hands on my computer and write is a day that means I am here and the neurons are firing. Some days I’m better at coming to grips with the limitations, and though it makes me very sad, and takes a long time to express myself, I am here and still have insights and feelings I want to express.
I’m not able to make a movie from that script I wrote five years ago, that I had hoped to make into an astounding film about a Jewish dwarf who survived the Holocaust, hiding in garbage cans in Poland . Maybe someday someone else will make that full movie.
It was meant to show that in the worst of times, even a person with handicaps can prevail. The script was inspired by a true story about a little person, a Jew, named Abraham Kerber, who was my late father’s friend. In his case, his handicap of being a little person, is precisely what helped him to survive. He was small enough to hide in places the Nazis didn’t look. Maybe my daughter who is a great filmmaker and a producer, will tackle this someday. I hope. Maybe my best friend, Harry, who was my film editor, and visits me every week, will still be around and will help her to complete this. I still can dream and hope, and perhaps just putting the idea out into the world, will bring it to some fruition somehow, someday.
In Judaism the Pirkei Avot teaches, “It is not your responsibility to finish the work of perfecting the world, but you are not free to desist from it either”.
Julian Schabel is the artist and filmmaker who made The Diving Bell and The Butterfly. Based on Jean-Dominique Bauby‘s memoir of the same name, the film depicts Bauby’s life after suffering a massive stroke that left him with a condition known as locked-in syndrome,after he suffers a stroke. He is completely paralyzed but mentally normal. A speech therapist and physical therapist try to help Bauby become as functional as possible. Bauby cannot speak, but he develops a system of communication with his speech and language therapist by blinking his left eye as she reads a list of letters to laboriously spell out his messages, letter by letter. It is revealed that Bauby had been editor of the popular French fashion magazine Elle, and that he had a deal to write a book (which was originally going to be based on The Count of Monte Cristo but from a female perspective). He decides that he will still write a book, using his slow and exhausting communication technique. A woman from the publishing house with which Bauby had the original book contract is brought in to take dictation. The new book explains what it is like to now be him, trapped in his body, which he sees as being within an old-fashioned deep-sea diving suit with a brass helmet, which is called a scaphandre in French, as in the original title. Others around see his spirit, still alive, as a “Butterfly”.
The story of Bauby’s writing is juxtaposed with his recollections and regrets until his stroke. We see his three children, their mother (whom he never married), his mistress, his friends, and his father. He encounters people from his past whose lives bear similarities to his own “entrapment”: a friend who was kidnapped in Beirut and held in solitary confinement for four years, and his own 92-year-old father, who is confined to his own apartment, because he is too frail to descend four flights of stairs.
Bauby eventually completes his memoir and hears the critics’ responses. He dies of pneumonia ten days after its publication. The closing credits are accentuated by reversed shootings of breaking glacier ice.
I think about Michael, the man I met at The Rubin Museum, who has Alzheimer’s and is 70 years old, who was a brilliant successful lawyer, and is now in a wheelchair, unable to speak or walk or use his hands. I think of him often. What is his experience now? What is going on in his mind? Is there a similar locked in syndrome in which he is having thoughts he can’t express? Would he have words to express what he is experiencing if he could somehow communicate? People have described those with late stage dementia as being empty shells. Jean Dominique Bauby did not have dementia, but he did have a stroke and because a perceptive nurse was able to figure out that as Bauby blinked his eyes, he was trying to say something, his memoir was written, and The Diving Bell and The Butterfly was made.
I wonder if there are thoughts, and stories, locked in Michael’s mind that he isn’t able to tell anyone about, because he can no longer communicate. I watched as his caregiver Jaime, sits close to him looking at his cell phone. I know that Jaime is a great aide to Michael, who keeps him alive. He dresses him in clean well tailored clothes. He brings him to the museum to stimulate his senses. Yet, there is no method devised for Michael to communicate his thoughts. Are there thoughts, memories going on within his mind?
My observation: My mind is pieced together now in fragments from the past intermixed with the present. I remember a fragment and start to write about it. A thought, a memory. I see the relevance of the facets of memory to my experience now, but can not piece things together fluidly. Days go by. Night follows day. I’m a watcher of the flickering light.
I showered today and washed my hair. Groomed even though I did not go anywhere and had no visitors. That’s normal behavior for anyone, yet for me it takes a good deal of effort. My husband is here with me and it certainly provides more self respect to be dressed and presentable. Today he is calm and considerate. In the drawing of myself, “Self Portrait in dementia”, I am the antithesis of this. It was made several days ago. It’s me in a bathrobe and is a self portrait when I’m not groomed and presentable. Some days I am more debilitated. Some days I am more depressed. Today I was afraid I wouldn’t get dressed. I did and sent my daughter a photo. My small triumph of the day.
Many times now the words come out wrong, letters jumbled and thoughts unable to fully form themselves into a cohesive whole. When I go and correct a word, I lose the thought that propelled the sentence. I read about others with this disease writing books and pleasantly managing their relationships, and facing each day with courage and compassion. They travel alone by train, are a part of life. Is it that I have a rapidly progressive form that is a different phenotype entirely? How is it that 2.9 years after the onset of this I am not able to do the things that other’s can who have this diagnosis?
I have part time paid carers who come to my home to offer companionship and help get me through the day several days a week when my husband is at work. To have reached a point where I need this help less than 3 years from the onset is ominous. One of them told me that the disease wants me to stay in bed., when I told her how hard it is to get up and get dressed. The disease wants you dead she said, and fighting it is getting up and getting dressed and functioning as much as one is able. One of them says he visits a man in his 70’s with late stage Alzheimer’s, and he makes sure to help him walk around his apartment.
When I was first diagnosed in January 2017, the neurologist said there is cognitive remediation available at Rusk Institute. That was a little over a year ago. I jumped at the “opportunity”, thinking that some magic wand could help me.
Almost year after the diagnosis we received a call from The Rusk Institute for Rehabilitation. I was to have my second round of neuropsychological testing. Through a sequence that included tests of memory, attention, executive function, speed, perception and visuospatial skills, a comparison was made to the tests I had taken in November 2016 when I saw the first neurologist. The tests administered at that time showed dysfunction and impairments in the areas of speed and processing as well as certain other cognitive domains. 6 hours of tests. The first time the materials used were a computer as well as pen and pencil tests, and physical tools where I placed little metal shapes with alternate hands into grooves. The materials this time were different. For example, this time I was given a block of wood with 3 pegs and colored disks of different sizes, and had to figure out how to stack them so that each one was smaller than one beneath it. I moved the disks onto the different pegs until I finally had the disks stacked correctly.
I was curious how I would do a year later on these tests. The results showed that my Attention and Concentration have stayed the same. Interestingly I was told that parts of Memory have improved, as shown by an improved ability to listen to a story and learn and remember some of it’s content. My ability to learn a list of words was slightly lower than last year. My visual memory was in the average range and she didn’t see a huge delay. She said my visual spatial skills are quite good. She said that I copied a figure methodically; could draw a clock, see visual targets and could scan. I put physical things in my world together correctly, she said. The areas that are frightening, and which I am aware of is that Processing is significantly slower. This means how quickly I take in information. How quick I think. The other areas that declined were in Flexibilty which The Trail Making Test (Part B) measures (mental flexibility, divided attention, and the ability to quickly sequence items). This explained how this manifests in day to day life (dressing, preparing a meal). The same was noted in my problem solving ability. In the end she said it’s not a big decline from last year.
She has no idea. Last year I was still working, I was able to still process lots of information, enter grades, sequence information much more quickly.
She told us that Rusk is not a place for cognitive remediation for Alzheimer’s. Is there such a place? Rusk is a place for remediation when there is no neurodegenerative disease, such as patients who have had a stroke and work with their psychologists to determine cognitive areas of functioning that may have been affected by the stroke to strengthen them. Still she offered 6 sessions with a psychologist to improve functional memory.
I met with the psychologist last Friday. The result of the one hour session is that she told me to buy a notebook planner. Wow.
As weird as my systems for reminders are, a combination of my iPhone and the list I write every day in a notebook that I keep on my kitchen island, which reminds me to take my medications, to eat, to take my supplements, to draw and write, is the system that has gotten me to this point. If my dementia mentor had not suggested (over a year ago) I put my clothing on a hanger the night before, I would still be having trouble getting dressed. I figure out which item of clothing goes on first, because of the order in which I drape things and clip things to the hanger. My compensatory strategies are not great, but so far they are working. I get dressed. It’s not getting easier but somehow I do it every day. As long as I can dress myself and shower, and walk and talk, and am not incontinent, I do not exhibit the overt signs of this disease.
There is no cure. There are compensatory strategies. Reminders. My iPhone, my computer. Rusk Institute is another place that can not offer me much in the way of remediation. It’s my own will to carry on despite the disease that makes me live. Not nearly as well as I’d like. How I wish I did not become disoriented when I go out. How I wish I could still travel alone, on the bus, the subway, a plane. I was a world traveler.
The traveling I have done today is my fingers on the keyboard describing my interior monologue.