Alzheimer’s Planet

Suddenly Mad- Alzheimer_s Planet - word salad drawingWord Salad is what I call the drawing. Not one of my studied and pretty drawings, but rather an illustration of what things have been like for me. I’ve been finding myself coming out with sentences that have no reference to reality now. I notice that it happens when I am very stressed. I wrote down that I heard myself say, “for self of it”. What the hell does that mean? It is obviously meaningless. Lots of what I am saying now is meaningless babble. I even find myself looking in the mirror and saying things I don’t understand. Things like, ” goings of it, when there is some places to do”, is something I wrote down when I heard myself say it, and “that’s how it is, when it happens it gets there” is another one I wrote down today. These are word jumbles and I don’t understand why this happens, except to see that it means I am progressing. I looked up Wiernicke’s aphasia.  https://www.youtube.com/watch?v=dKTdMV6cOZw&list=LLyHxyM2AocWtt8XAIctnx9g&index=45 but this is not like that. What’s been happening with me is the emergence of nonsensical sentences and words strung together. It’s very scary when this happens, but writing it down helps me catch myself and possibly prevent it from spinning out of control. This seems to happen when  my brain switches off and my mind becomes scattered. I know this means I am losing my grip. It means and shows progression. It means when I am trying to express a thought the synapses are so jumbled or not there at all, that when I speak the connections are not connecting. Or that there is the need to express myself. I am now afraid to be around people who are not familiar, lest I start speaking this gibberish unexpectedly. It comes out of no where. It’s the awareness that this is happening that is so puzzling. How can I know this is happening and yet not be able to control it? Or how do I become aware I am doing this after the fact? It’s like there is a part (or parts) of my brain that are aware and a part (or parts) that still do it anyway. It’s like one hand not knowing what the other is doing. Strange. But nothing in AD is surprising. It’s a progressive brain disorder and it is terminal. Yet one can live with it for years, and become mute. Is this gibberish a step on the path to becoming mute? Usually I am  conversant with a little aphasia, and having problems remembering names and words. But this is obviously quite different from that. That’s one reason I continue to write. I surmise that if I can write, I will continue to be able to speak. Lord please take me before I can’t write or speak any longer. That is my prayer. I was such an eloquent speaker. I do not want to live and babble or be mute. Or have a three word vocabulary. No!

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I still know the order of the alphabet A B C D E F G H I J K L M N O P Q R S T U V W X Y Z. These letters are in the drawing. Dancing around my head (yes, that’s supposed to be me, with a blue face that’s supposed to represent water, and land forms on my face which are supposed to represent continents). Everything is quite literal. Alzheimer’s planet. Word salad because the letters are swirling around and out of my head. I still recognize when a word is misspelled (usually, well actually the computer underlines words which aren’t spelled correctly, so there’s an assist). I can spell WORLD backwards, which is one of the questions on the Mini Mental Exam administered by the neurologists D L R O W.

W O R L D.

I have Alzheimer’s disease, and in fact am in the moderate stages. I am experiencing the physical manifestations of the disease. Alzheimer’s is a physical disease that progresses and affects all parts of physical and cognitive functions.

Today it was extremely hard to walk down the spiral stairs. My husband stood behind me, and I heard a deep sigh, as he waited for me for to get started on my descent. Once I get going, I can do it, but starting is what is hard. My brain doesn’t click into the start mode. I have to wait for it to turn on and then I can go. Walk. Ambulate. But once I get downstairs, I sit, and can’t get going again until I look at the list. The damned list that I refer to in order to function and keep going.

The list tells me what to do and I do this everyday. The list that reminds me to eat. First I drink tea, and then eat a banana. I take 2 paper towels and place one on my lap, and the other beside me. I peel the banana as I eat it and put the peel on the paper towel. Then throw the peel in the garbage. Take the paper towels over to kitchen island and take my thyroid medication. Then I put the tea on the counter beside the stove top near the kettle. I take the white cup from the cabinet and pour some coffee. If my husband is home it’s still hot. If he’s not, it’s cool. I put cream in the coffee, which I take out of the fridge, and put the cup in the microwave for 50 seconds. Then I take the coffee and sit again, and play Lumosity on my iPhone as I drink the coffee. It’s hard to tear myself away from the Lumosity games, but I have to if I am going to get dressed and eat breakfast (which is often around the time normal people eat lunch). This is my routine. It’s how I get started every day. I wash the coffee cup and dry it and put it back into the cabinet. (I have become rigid and have to do these things in the same order every day). Then the anxiety about dressing myself begins. I’ve already put the clothing I’m going to wear on a hanger the night before bed.  The clothes are in the bathroom, hanging on a hook. I go there and place a towel on the floor. If I am able to shower it’s there to soak up the water when I emerge. Showering is hard. The order of what part of my body to clean first, second, third…is what I have to think about. I question myself. Did I forget to clean _____________? I lean on the tile wall of the shower, because my balance is off. I often find myself washing parts of my body again and again, because I forget what I just washed. Washing my curly hair is the biggest challenge of all.  I realized I had put conditioner on my hair instead of shampoo and shampoo after the conditioner. This is the wrong order, so I repeated it in the right order. HAIRS! Curly hairs all over my body and on my hands. My hair falls out. Somehow I got the shampoo and conditioning done, and scrubbed my body clean. I stepped  out of the shower and grabbed a large towel to dry my hair, and another to dry my body. I am usually freezing by this point, and try to dry myself as quickly and thoroughly as I can. Of course, I still want to appear groomed. I want to maintain my dignity. I don’t want to smell bad. But the steps in taking care of grooming, showering, dressing, brushing my teeth, getting my hair to look nice, are the hardest part of my routine. I’m not sure if describing this can convey why this is so difficult to do. Once dressed and teeth are brushed and I’m reasonably groomed, I go over to the patio door and open the shades, then walk over to the bench and pick up my pajamas which I folded and left there before I got dressed,. I take them along with the hanger I hang my clothes on for everyday, upstairs, and put the hanger on the hook in the bedroom and put the pajamas back in the drawer where I will know they will be when I get ready for bed. This is repetition, repetition in Alzheimer’s in order to maintain a routine and be functional and dressed and able to go outside and be around people. I certainly couldn’t go outside in my bathrobe and pajamas!

Then there is eating. Chewing and swallowing are becoming harder to do. My husband leaves cut fruit in a bowl, which I eat with a spoon. He leaves me a hard-boiled egg which I slice with an egg slicer, and a small cup of yogurt. He leaves me a fruit smoothie drink that I pour, before I get started eating. I usually take these out of the fridge before I get dressed so they are there when I sit down to eat. It’s a process for me. Food in my mouth feels weird. The texture of each food and how to chew each food and swallow each food is different. Cut fruit and berries are doable, but chewing the egg and swallowing requires sips of the drink. Even yogurt is a challenge to swallow. When I finish eating, I take Rivastigmine (the medication prescribed by the neurologist), and chew a baby aspirin (the neurologist says this is to prevent strokes). I wash my dishes and the cup, and place them on the dish rack.

Then the question comes up. What’s next? Sometimes I call Ruth. I tell her I got through my routine and ask her how she feels. Often we plan to see each other, with her usually coming over, but some days I am still able to make it to her apartment which is a half mile away.

Then I have to do something, to occupy myself. It’s usually more Lumosity, or the New York Times mini crossword puzzle. Yes the mini crossword puzzle. I will look at the New York Times on my iPhone. Orient myself to what day it is, and what is happening in the world. It’s cold now and going out is getting harder. I try to walk outside a bit. I push myself to get my sweater and down coat on, and go to the park, and walk around a few times.

Yes, this is my life with Alzheimer’s now. This is how I function. It’s a very limited existence, and I hate it. I hate this disease and what it has and is doing to me. I am not the person I was who would go and do and travel far and wide and functioned well. I am regressing and declining and watching myself as this happens. I am fully aware of all it. Of course, I am depressed. Severely depressed. But I push on and somehow manage to get through each day.

Suddenly Mad- Alzheimer_s Planet- Monday Nov 11 from The New Yorker crosswords Any Clues cartoon

Thanksgiving

Thanksgiving Day is here and we’ve been invited to my daughter-in-laws mother and step father’s home. Our daughter is coming too. She usually goes to her boyfriend’s family, but she wants to see the new twin babies and Ellie, who just turned three. My son and his wife and the babies, and the grandparents and my husband and daughter will be there. Who else? Definitely my daughter-in-laws brother. Probably my daughter-in-laws grandfather and his girlfriend. Possibly her uncle and his children, the twins and their older sister. Maybe the Russian cousin too. Possibly some friends who are neighbors. Russians go all out at parties and love to celebrate, so I have no idea how big the party will be. Hopefully it will be more of just the immediate family.  I am nervous about being there. There won’t be a safe room for me to get away to. I will be seated at the dining table and I’m concerned about chewing and swallowing the food. I have to make sure there is a drink so I don’t choke. There will be Russian foods along with the traditional turkey with vegetables. Russian foods like crepes with salmon caviar and a pink jelled aspic that I think is called Kholodets. Usually things like Sprite or Pepsi are offered. There is always vodka offered which I can’t drink. I will ask for juice, and ask my husband to pour it. I will be careful and eat slowly. There may be people there who I haven’t seen for a year and who don’t know I have Alzheimer’s. I do not want to broadcast it. I will try to manage myself as best I can. An email friend, whose husband was diagnosed with Alzheimer’s wrote me and said “there is nothing to be ashamed for, it is just a disease, and for every illness one has to make certain accommodations”.

A memory of a previous Thanksgiving dinner: It was Thanksgiving Day 2007. I invited my daughter’s friend David, his mom and sister, to our home. I prepared the feast. David’s mom was a daughter of Holocaust survivors. like me. She had taken me to several group meetings for 2nd generation adults, and we had become friends. David used to hang out with my daughter, and had been my art student when he was in the 8th grade. His mom was a single parent. We had a good time and David spent some time hanging out with my daughter. That summer I became an American Fulbright to Poland and my daughter joined me there. As we sat in our former communist bloc apartment in Lodz on December 23, 2007, a call came in on her phone. It was my daughter’s friend  friend Mey. She told her that David had fallen from a roof. He was at a party and the kids went up to the roof. He lost his balance and fell, and died. I thought about the fact that he had been in our home only months before. I thought about his mother. His sister. I am thinking about him now. He was only 17 when he died. It is eleven years later. I have been diagnosed with Alzheimer’s and have progressed markedly in 3 years (2 years since the diagnosis). One never knows what is in store in one’s life. One minute you’re here and the next – poof – gone. I’ve lived 47 years longer than David. I had a pretty good life until I got this horrible disease. David’s life was so brief. I used to help him with his artwork, and was mesmerized by his large light blue eyes. I give thanks for having met him, this shooting star. What happened to him is tragic. I have had a pretty good run, but this has got to be one of the worst possible ways to go. But I’m still here and I will get to see my grand babies at Thanksgiving. I’ll eat slowly and carefully. I will feel blessed that I made it this far.

 

Suddenly Mad- My Soul (portrait of Mimi)Suddenly Mad- Free Fall Drawing detail Wayne and meSuddenly Mad- Mimi, Soren and Elina detailA few more memories before I sign off. Today I took a walk on Clinton Street. I passed a demolished house in a beginner construction site where a low building stood. It will obviously be another condo building. The cookie cutter buildings are all over the city, crammed in, side to side. My daughter had a friend who lived in this little building many years ago, whose name was Jordan who had a little brother whose name I don’t remember. Her parents were Susan and Stuart. I remember that Susan loved flowers, and always had fresh flowers in vases. I would go over there frequently with my daughter and the kids had a lot of fun together. They moved to the New Jersey suburbs and the friendships didn’t last.

Right next door is another building that used to house huge artists lofts. I was friends with these artists who ran a special program called Four Walls. Some of the artists who used to present their work and discuss it at Four Walls have become famous and are showing their work in museums all over the world. Some are still painting, but their careers really never took off. It’s the luck of the draw.

Suddenly Mad- Alzheimer_s Planet - Michelle Araujo paintingMichelle Araujo                                      Untitled                                         Oil, oil stick and tape

Is it talent? Luck? Perseverance? Personality? I don’t know. Maybe all of these, or maybe none of these. Who decides?

I still have access to these memories. When I look at the present, I see the past. But the past is always disappearing, and I am disappearing along with it. Just like that building which is now a razed construction site.

Suddenly Mad- Alzheimer_s Planet - the house (now construction site) where Susan Guber lived with husband Stuart and their daughter Jordan and son. To the left is where Adam Simon and

The future: The house we live in will likely be sold and also become a construction site where a tall building with condos or apartments will be put up. Others will live on the footprint of this building and we will be gone. Not even a Wikipedia page to note the story of what happened here. That is what will happen, and the memories of what happened in this house will all be gone. That is why I write. To remember and plant these thoughts and imprint these memories – somewhere, before they disappear forever.

How will you remember me?

6 thoughts on “Alzheimer’s Planet

  1. I have been reading all your posts and my heart aches for you. You are a very talented, gracious lady and how I wish your life to be different! You are the bravest person I know. Best wishes.

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    • Jaya, Your honesty is refreshing, and your empathy is heartfelt. It does take a lot of bravery to get through each day. It would take more bravery to end this, and I don’t seem to have that sort of bravery. What would you do in my situation, I wonder? Can you tell me? M.

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      • I wonder if I would have that kind of ‘ bravery’, though sometimes it may seem the best way out. There is always that bit of hope, isn’t there, a desire for a miracle, that won’t let us loosen our hold on life. That is why I say my heart aches for you – how I wish I could do something for you! Please keep writing. There are many whose lives you have touched deeply.
        You have made me think anew, to be more empathetic. You are changing people with your blogging! Best wishes and respect.

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