Experiencing anger that nothing I do will change the fact that this disease progresses and I have no control over the “stages”. What am I looking forward to? Not being able to speak? Having 15 words left in my vocabulary, then 5 then 3? Stumbling along between my bedroom, living room, kitchen and bathroom? Then what? Forgetting where these rooms are located? Seriously, my world keeps getting smaller. I know where this leads, but I also don’t know. Because I’m not at that point yet. I have observed others who have this diagnosis. Some stay in the early stages for a long time. Some progress within months or a few short years. Each person is different.
Sure we’re all on a trajectory. Alzheimer’s or not. No one knows where their lives will lead. People who went to work at New York City’s World Trade Center twin towers on September 11, 2001, had no idea that two commercial passenger jets would crash into them making the towers collapse. They just went to work one day and this is what happened. 2,763 people died that day. The only ones who knew they would die were the 10 hijackers. The 2,192 civilians, 343 firefighters and 71 law enforcement officers, woke up that day, had their cups of coffee, or whatever they used to do when they arose. Most of them probably took showers and the women looked fashionable and the men looked spiffy in their suits and ties (it is New York City and people dress this way for work). Maybe they kissed their wives or husbands before they left for work. Maybe they told a joke and laughed and hugged their kids, after rinsing out their cereal bowls. And then shit happened. Shit happens! This is an extreme case, but I for one know that we plan our lives, and then our lives plan us.
It’s been many weeks since I’ve written. Often when I write, the letters get scrambled with misspellings, letters missing, and I stop. I have trouble reading more than an article in The New York Times, or a short story. I don’t retain much information. I forget. But I still want to write. Will there come a time when I get on my computer and the words look like this xjeho9odyxnbdk,disjms,djYTTRYUKmnheuyiodpuxyyhjsllpeo0iysghdkeo873t53555%^?
I don’t remember most of the posts I’ve written. I reread them to see how I’ve changed. A year ago there were no problems walking, chewing, or swallowing. My speech did not sound different. A year ago I was having trouble getting dressed. A year ago I did have trouble getting out bed and getting the day started. I wasn’t able to sleep much at all. That has improved somewhat, but I do go to bed very very late and do fall asleep as soon as I climb into bed.
I never wake up and jump out of bed and get dressed and ready and out the door. That is a thing of the past. The pattern is now to fall asleep after I write my list, make my tea, brush my teeth and wash my face, and take the tea and robe upstairs along with my iPhone. I set down the tea on my night table, plug in the phone, and put the clothes on the hanger for the next day. I put on my pajamas, and take the hanger with the clothes on it downstairs along with my shoes. I hang the clothes on a hook inside the bathroom door, and go upstairs to bed. Lights out and I’m asleep quickly. Sometimes I still wake an hour after falling asleep, but can close my eyes and fall asleep again. Lately I wake up five hours after I fall asleep.
I remember the lyrics of a song by Donovan I used to listen to as a teenager.
It’s called Sleep.
Sweet gentle sleep
Sooth and refresh me
Weary am I of this life
And my fortune
Black velvet night
Do envelope me
Falling am I, like a star
In a dark swoon
And silent creeps
Under hill, over dale
Like crimson wreaths
Sadly down the wind sail
The wind sail
Sparkle like a star
Sun and roses
Merely shows us
Exactly where we are
A jaguar, a hollow car
Far in the winter, lane-o
Lacework trees, the Jack Frost breeze
Pheasant birds are slain-o
I know that there are people who read my sad musings and some have said they look forward to receiving my words. So I write for you so that you’ll know I am still here. I’m reporting from the outer reaches of my Alzheimer’s mind.
I understand that you are trying to relate and it’s hard to understand my lack of motivation, the difficulty starting, the start stops, and the great big nothing in between. All I can do is try to explain what it feels like.
I think of the movie I watched with my son when he was little called The NeverEnding Story. It’s about a boy, Bastian, who misses his mother, who has died, and he is bullied at school. One day, he is running away from the bullies and hides in a bookstore, where the owner shows him a book that he has never read called “The NeverEnding Story”. He takes the book, leaving a note saying that he will return it after he reads it. He goes to the attic and reads the book that tells the story of the magic kingdom of Fantasia that is doomed to destruction, unless a boy, Atreyu, can go save it. But he needs the help of an Earthling boy to avoid that The Nothing destroys his world.
What I keep remembering about the movie is the visual force of The Nothing. The way it destroys everything. The boy succeeds in battling The Nothing. The Nothing is a good metaphor for Alzheimer’s. The Nothing is entropy. Chaos. Death. The wind that blows away the world. Unlike the boy in the story, I can’t stop The Nothing.
The days have turned into weeks. The blur of sameness. That’s the part of all this that is depression. I am able to parse that out. My late mother who had late age Alzheimer’s, I believe beginning in her late seventies and lasting until her death at age 87, used to say in Yiddish, “Alles is allamool der zelbe, der zelbe, der zelbe”.
The translation is “Everything is always the same, the same, the same”. I did not understand then. I understand perfectly now. She was by then mostly bed bound and fully housebound. I had no idea that what she suffered from might be Alzheimer’s. I was uneducated and naive. She would spend the day in bed and get up late at night when my father and I were trying to fall asleep. She would pace around the living room and rant and rave for hours about how horrible my father was. It seems to me now that she was experiencing sundowning. I would hold my hands over my ears trying to silence her intrusive wailing. A few years later, frail and in steep decline, she fell on the tile floor of the living room of their Florida condo, and broke her arm. That spurred a much faster decline. When I called her on the phone (which was in their kitchen), she told me she could not stay on the phone (a wall phone) because it was too hard for her to stand. A year later I sat next to her on her bed, and my father walked into the bedroom. She looked at him and instead of Michael, his name, she called him Moshe (the name of her deceased cousin). By that time she was incontinent and a hired caregiver would come and change her diaper. Then she was hospitalized for dehydration. In the rehab, a nurse gave her a prescribed dose of Haldol, which caused a stroke within minutes. She never spoke again and never walked again, and never fed herself again. She went from late stage to beyond late stage. She lived like that, incontinent, hand fed, moved by caregivers from the hospital bed to a chair, then back into bed, and mainly slept the rest of the time, for almost two years. She died of aspiration pneumonia, but it was Alzheimer’s or a combination of this and Vascular dementia, that took her down that miserable path.
So here I am twenty two years younger than she was when she died. I do not want to decline like that. I do not want this disease, but I have it, and know what it’s called and know that it’s neurodegeneration. I do not sleep all day in my bed as she did, but find it very hard to get out of bed and function. I have a form of what my mother had and the onset came for me almost two decades earlier than it did for her. She suffered from depression. Depression and anxiety can lead to dementia. I took medications for this in 2003, 2005, 2008, 2012 and then in 2015 when I was put on Wellbutrin, SAMe, Lorazepan and Klonopin the medications pushed me over the edge. The neurologist said they disrupted synapses. My broken brain could not recover. When this started and I thought it was a terrible relapse of depression and anxiety. Then a few weeks after starting the medications, I had a paradoxical reaction, and woke into a psychotic state in which I was dreaming fragments of a dream while awake. The medications to treat the depression and anxiety broke off whatever remaining synapses there were that were holding things together. I do not have the Presenilin gene, and was tested for that, but I obviously had the same tendency, or genetic makeup as my mother, and succumbed to whatever brought her down. But so much damned earlier and so much faster.
The other day my brain physically shifted in my head. It felt like that. Like a seismic shift in the topography inside my head. It’s possible that my brain which is shrinking, moved inside my skull. The word I would use to describe what it felt like is “Doink!”. Something shifted.
Now that the friend who promised to be my friend until the end, has severed all ties, there is essentially no where to go by myself. I experience this as loss of independence. Being able to go to her apartment and visit her kept me going. Kept me from sitting so much. Kept me walking. Gave me courage. Gave me hope. Put a smile on my face. Lately I have to force the smile and my lips crack.
Once a week, on Wednesdays, Jeanne visits and brings good food and we pay Scrabble. When I played with her last Wednesday, I noticed the words I came up with related to my condition. Scrabble poetry. I spelled MINDS and then spelled ENDURES. I then added an S to ENDURE and then spelled WEEPS by connecting ENDURES to it. This gave me 41 triple word points. I beat Jeanne by around 100 points. Emotional Scrabble. My mind weeps and endures.
My husband hired a woman, Teresa, to be my companion two days a week. She takes care of a 94 year old woman in the evening, who is blind and has Alzheimer’s, so being with me a few afternoons a week, is more stimulating for her than that job. She said when this woman speaks, she talks to and about her dead husband as if he is there. Last week we walked a mile and half. She came last Tuesday (as she did again today), and it was freezing cold outside, and we stayed inside. We stayed inside again today. My yoga teacher, Krishna came, and while I was doing yoga, Teresa made the bed and did some light housekeeping. Last week I asked her to put together one of my Ravensberger puzzles, and I timed her on my iPhone timer. It took her longer to do it than it took me. She is 58 and has five adult children and grandchildren. Her husband died 8 years ago at the age of 62 from a blood cancer. She said he lasted 8 months. She’s told me a little about him. He was a New Yorker, and it sounds like he was inspiring to her. I showed her the documentary, The Forgetting. I showed her a video of Laurie Sachs (Looks Like Laurie, sounds Like Laurie) who had rapidly degenerating Fronto Temperal disease that began when she was 46 and killed her by age 52. Always the educator, I want her to know what she’s dealing with. I am still a teacher in a way. She asked if I like to listen to Dolly Parton. Has she heard the music of Lou Reed, David Bowie, or Patti Smith? Chopin or Debussey? This is the music I listened to and can relate to.
She is open to learning and is patient…and let’s face it, I’m stuck. I do need a reason to get up and push myself to get through some semblance of a routine, live through each day…somehow. I haven’t been drawing much at all, and though I still read, I am not retaining much. I am at the point that I need a companion to go out and take walks. I need someone to talk to. Everyday. My friends have abandoned me, except for Jeanne who visits on Wednesdays. So Teresa is for now my part time companion. To chase away the loneliness and keep me going.
She’s a petite woman, and I doubt she will be able to move me around, and shower me, if and when it gets to that point. My late mom during those last two years of horrible decline was sponge bathed in the hospital bed by the nurses and caregivers my sister and I hired. Awful. So if you wanna pray for me, pray for my passing before it gets to that point, because I will not be a docile creature that is easy to wash and feed if I can’t do it myself. And I can’t imagine my husband will give me sponge baths. So pray for me to not get to that point, because I hate this disease and do not consider that a life worth living.
On Thursday, Teresa texted and canceled and said she didn’t feel well. I texted her later and asked if she went to work with the 94 old woman. She said no because she didn’t feel well enough. What happens if an aide doesn’t show up when a person is truly bed bound and doesn’t have any family member supervising? I guess they just lay there and wait.
I stayed in bed until 12:30pm that day, until my husband texted me and urged me to push myself to get up. Without a destination or a friend to visit, or a friend visiting me, I am not motivated to push against the confusion and gravity that confronts me as soon as I get out of bed. The enormity of dealing with this when I’m alone is daunting. The chasm between my bed and going downstairs to dress and go through the rigors of the routine – dress, groom, brush my teeth, put on makeup, eat breakfast, is likened to crossing the ocean on a broken raft. For what? To sit alone in my house? But there was a Dementia Alliance International zoom chat support group at 4pm to attend on my computer, and those good friends who welcome me, would not have been happy to see me disheveled in my robe, and unkempt. So I pushed myself to go through the routine and ended up looking presentable. Glad I did as I got to see Paula, Christine, Dallas, Jerry, Deb, Paul, Roger, Bob and Kate. Actually laughed a bit and I had some fun online with my dementia buddies.
I still use the photographs on my iPhone to remember what I did do on certain days. But when there is nothing to do taking photos outside the patio door of the same view is more of the same and that’s when I know I have crossed the line.
Once a month my husband takes me to The Rubin museum’s Mindfulness Connections program for people who have dementia. That is the highlight of the month, but also a stark reminder that I am not at all who I was. The photos below are from that day, Friday Jan 17. Entering the Lincoln tunnel, my husband at the wheel of his red VW. Passing the famous Chelsea Hotel on 23rd Street, which is being renovated. Introduced by the docents to a painting in the collection at Rubin called Ushnisavijaya and Celebration of Old Age. Kaumari, a repousse (hammered copper) sculpture of the Hindu goddess.
Maureen was there with her husband. Friendly and docile in her Alzheimer’s haze, she doesn’t speak much, certainly doesn’t participate, although her husband does. Scott showed up and I said hello. I would have liked to speak with him, but there was no opportunity. He also doesn’t participate, but I guess as a former plastic surgeon in the earlier stages of Alzheimer’s, he doesn’t have or retain much insight into the artworks. Still I wonder about this because he is able to speak and does have insight and clarity about life in general. He told me he is not afraid to die. said he has no kids, and his wife is dead from cancer. He has no remorse and is ready whenever it happens. Then an older woman, probably late seventies, was wheeled in by her caregiver. She was smiling and friendly, but when she spoke, what she said had nothing to do with anything we were looking at and it was obvious she was in an entirely different world of her own. It disturbed me to see her, pleasant as she was, she was in the museum, in this world, but not in it. I deflected and drew the attention back to the artwork we were looking at, and noted how the way the painting was organized reminded me of the registers used in ancient Greek and Egyptian art. Yes, I was freaked out by this woman who was no longer experiencing a reality that made any sense to me. Yes, it frightened me, because I never want to be like that.
I have become much more housebound, and when Jeanne comes by on Wednesdays, at 2:30, I like going for walks with her. Since she only stays until around 6:30 and we like to play Scrabble, our walks are brief. The last time we went to the park, I spotted this bird sitting on top of a big bush. Jeanne is something of a “birder” and said she thought it was a Warbler. She asked me to send her the photograph I took, and she sent it to a woman at The Audubon Society. Turns out it’s a Mockingbird. A Northern Mockingbird.
I started to draw the bird from the photograph, trying to channel it’s composure, nobility and strength. It was coming out badly. I was unhappy to see that my drawing resulted in such a stiff semblance of this powerful feathered creature. My ability to capture it’s spirit was nil. I cut out an image of a piece of sky from a magazine, and pasted it over the top half of the bird. Not one of my better images but an image I made nonetheless, so I’m compelled to include it here with a little figure of a wolf howling up at it. The mockingbird is so-called because of its ability to mimic the songs of other birds. In fact, they have no call of their own. This way, they symbolize the power of the voice, its ability to draw or repel others, to make or break situations and relationships. I read that when you encounter a mockingbird, it’s time to stop for a bit and look into your heart for something that’s being left unsaid.
So I looked into my heart and it took many weeks to figure out what was unsaid. I could see it on the list I write everyday. I wasn’t following my heart. Write to Raphael in my handwriting on my list, repeated day after day.
Raphael was my student. The one I gave my all to before I became ill. In fact, I remember telling him that when he graduated I would go into a kind of mourning period. ittle did I know then what would happen to me after he graduated. I would sink into depression and be diagnosed with Alzheimer’s. He studied drawing with me and art history. I introduced him to so many artists, took him to all the major New York museums, and mentored him. A brilliant young man, he is a master of languages. He speaks and writes Japanese, and taught himself Arabic and Hebrew. As my student I encouraged him, but he was also my friend. The last time I saw him was October 2016. He had already graduated and had started his college freshman year at The New School. This was at the same time that I was undergoing neurological tests at Columbia Presbyterian hospital. I had just undergone the Spect scan, and neuropsychological testing, and was told by James Noble M.D. that the pattern in the image of my brain was that of Alzheimer’s., diminished blood flow to my temporal and parietal lobes. When Raphael visited me in the fall of 2016, I was distracted and nervous. I didn’t want him to know what I was going through. I left him sitting at the kitchen island and took a call from my cousin Sandra who was calling me from England. I was on the phone a long time, speaking to her on the 2nd floor of our home, and left Raphael sitting there for the better part of an hour. When I finally got off the phone, Raphael was ready to leave. He tried several times over the course of that year and the next to get in touch with me and to stop by. I always made excuses for why I couldn’t see him, and then I stopped answering the phone when he called. A few months ago he called again, and left a message. I texted him that I would write him an email explaining what was going on with me. Months went by. I didn’t write him. Last Thursday, my husband took me to the hairdresser. As I was sitting getting my hair done, my phone rang, and his name came up on the screen. I didn’t answer it. Days went by and it bothered me. I didn’t want Raphael to think I was ignoring him purposely. I wanted to tell him what had happened to me. I wrote him an email and told him that I had been diagnosed with younger onset Alzheimer’s, and that in 2 and 1/2 years the disease had progressed rapidly, and that I had to resign from my position as the chair of the department in June 2017. A few days later he wrote me back and sent me some of his drawings. This is what I received.
The Book of Job, Part I: “There was a man in the land of Uz named Job. That man was blameless and upright, he feared God and shunned evil” (Job 1:1)
The Book of Job, Part III: God’s fire fell from heaven” (Job 1:16)
The Book of Job, Part IV: “Naked came I out of my mother womb, and naked shall I return there” (Job 1:22)