Two images. Past. Present.
One an old photograph 1957 or 1958. I’m around 3 or 4 years old.
The other a self portrait. My last drawing.
“It is hopelessness even more than pain that crushes the soul.”
― William Styron,
Writing cohesively is getting harder to do. I go back and forth, deleting what I have just written. I started this post days ago.
Every day I have tried to continue, but get stuck and can’t go on.
When I return to write, I find I can’t complete the thought, and go off on tangents.
If I didn’t have Alzheimer’s I would call it writer’s block.
Enough, I say and close the computer, and tell myself I will come back and complete this the next day. The next day and the next day, the same thing happens.
Here are the fragments from the last few days.
It’s likely too personal and without a filter.
Unresolved sagas about my mother, my father, my sister… It makes me think that those who have a contented dementia, must have been loved as a child, must have felt loved. I did not feel loved and was not nurtured by hands of gentleness. I defended against being honest with myself about these feelings for years. My parents were Holocaust survivors, I would tell myself. Forgive them. Their experiences made them crazy. I am now confronting the emptiness that they left me with, and yet missing them because there is no way to resolve any of it.
Yes they were survivors of the Holocaust, and I do blame Hitler for the people they became, but I was their child, and did not deserve to be tormented in the wake of their nightmare.
The photo of me as a 3 or 4 year old has my sister’s name on the back. It was obviously me, but my mother wrote my sister’s name on the back. I know it’s me because the photo below shows the three of us together in a park near our apartment in the Bronx. It was taken before everything fell apart. Years before her mind started to erode.
How can a photo contrast so sharply to what I remember, to what it felt like? The three of us look so happy.
By the time I was the age my sister was in this photo, around 12 years old, my late mother was severely depressed. My sister was seven years older than me. I realize now that my mother only had the capacity to love one child, and that was my sister. She was the beautiful one, and for my parents she represented life reborn after all the loss and insanity of losing their families in the Shoah. She was born in 1947 in Germany after the war. A premie, she had a rough start, but by the time she was two years old she was a ruddy cheeked strong toddler. My mother nurtured her. She was loved and adored by my parents, truly cherished. They made the journey to the US by ship when she was five years old, and settled in New York City, aided by HIAS an organization which resettled and aided the displaced Jews who were able to get here.
I was born in New York in 1954. My mother told me that when my father visited the hospital, he said, “Oh no, not another girl”.
My father adored my sister. She was the beautiful one. Instead of taking my mother to bar mitzvah’s and weddings, he brought my sister with him to show her off, and left my mother at home with me. Rather than bond with me, she withdrew into her own world.
Growing up, I knew to leave her alone. Depressed people can not give of themselves. Silence is what my mother craved. Silence and her bed. I was privy to her behavior the most, because my dad was at work, and my sister was already out of high school, taking college courses, working as a secretary and rarely home.
My mother would race around cleaning, prepare the evening meal, and then retire to her bed in broad daylight. She settled into a powerful silence. She actively ignored me. She didn’t respond to my attempts at conversation, my questions, my pathetic efforts to amuse her, to cheer her up. It was as if I didn’t exist, even when I was in the same room. I hated her neglect.
My father had a small manufacturing business. He ordered machine parts from Germany that knitted plastic and curled copper and brass pot cleaners. My mother worked in “the shop” that was my father’s side line. His “day” job as a machinist was supplemented by this manufacturing business. On weekdays my mother ran the machines.
It was a dirty noisy place. She probably didn’t think I should be there. But I didn’t know this then. So much of the time I didn’t know where she was.
At age five, I was often alone in the hall entry to our building on Walton Avenue eating Turkish Taffy. I became addicted to candy. My favorite thing to do was to go to the corner candy store. I would buy taffy, gum, Jujubes, cherry slices, Bazooka gum (with Bazooka Joe comics inside), hot tamales, watermelon slices, tootsie rolls. Candy cost a penny then, 2 cents, five cents and a dime. She doled out the change to me from her little change purse with little metal clasps. No wonder I had tons of cavities as a child. She would take me to Dr. Topperman, who filled the drilled cavities with mercury fillings.
Today there are conflicting reports that the mercury in amalgam fillings may contribute to developing Alzheimer’s. Mercury is toxic to the brain.
It’s sad to think that eating so much candy was my way of filling the emotional vacuum of feeling like an unwanted child.
My parents moved to Florida when I was 17 and I went in the opposite direction to study art in Canada. I was ill prepared for life on my own, and college in another country, but my father who lived to the ripe old age of 90, had had a heart attack at 53, and he and my mother were intent on taking care of themselves. My sister, was by that time married and starting a family of her own. Armed with a student loan and $100 a month that my father sent me, I survived. This was 57 years ago.
By 1990, my parents had made a move from Miami Beach to Hallandale, Florida. She was disoriented. This new area, a block from a strip mall was isolating. She spent all day in her housecoat, shuffling around inside the apartment and clinging to my father. A few years later my father hired an older divorced woman, Dorothy, to be her companion. After Dorothy, who chain smoked Virginia Slims, suddenly died, my mother hardly got out of bed. My father sat in the living room, watching the stock market readings on the television as she lay in bed all day. At night, she would get up after he went to sleep, and would pace around the living room, railing about him. He snored through it. By that time, I flew to Florida every two months, took them to doctors, arranged for Jewish family services to provide social workers to visit them. She continued to decline, and became incontinent. A hospital bed replaced the matching twin bed.
She died at age 87, after doses of Haldol prescribed by a psychiatrist, purportedly to give her a better appetite, caused a stroke. It happened when she was in the hospital rehab, just released from the hospital where she had been admitted with dehydration. I was standing by her bedside. She had just taken a walk in the corridor, and was smiling and talking to a nurse. She got back into the bed and the nurse came over and administered a large dose of Haldol. Within seconds her mind was gone. I sat with her as the ambulance rushed her into the adjacent hospital and I frantically pushed the stretcher to the ER, where she was readmitted. For the next two years she had to be fed by spoon with pureed food mixed with Reglan to increase her appetite. She had to be turned in bed to avoid bed sores, which happened anyway, as her immune system broke down. She never walked, talked or moved her body by herself again. But she did utter one word when I brought my then 8 year old daughter to visit her. She opened her eyes, and called out my daughter’s name.
Depression has been shown to be toxic to the hippocampus, making it shrink, and today there are studies that link depression to the onset of Alzheimers. Mine was an extremely depressed and highly anxious mother. I in turn suffered from depression, experiencing the first overt signs of it as a teenager. After I married I was happily free of it’s dark cloak for a long time. I was too busy to be depressed. I held jobs in the art world, then graduate school, gave birth to my son, ran a contemporary art gallery in New York, then gave birth of my daughter.
By the time I was forty three, I crashed. Deep unrelenting depression. The psychiatrist who I believed to be an expert in his field, a doctor and professor at Cornell Weill, prescribed large doses of SSRI’s and SNRI’s along with benzodiazepines. I believed that the psychiatric drugs would make me well and I trusted him. But the drugs made me at turns much more anxious and ultimately more depressed. The side effects were atrocious. I could not stay on them, and went on and off of them for the next fifteen years. Now that I have Alzheimer’s I have learned that antidepressant drug usage is associated with AD/dementia and this is particularly evident if usage begins before age 65.
I was also prescribed thyroid medications when I was deemed sub-clinically hypothyroid by a Functional Medicine M.D. who said it could help with depression. I was never truly hypothyroid, and have now read the research which links medication for hypothyroidism with hypo-metabolism of the brain. Results of studies suggest that taking thyroid medication at baseline may be associated with a faster rate of DAT diagnosis.
I had loads of therapy. Primal therapy in my twenties, where I screamed and cried, and released chunks of embedded emotion. I laid on the couches of numerous Freudian, transactional, cognitive and humanist therapists. I could have bought another piece of real estate for the money I spent on therapy and psychiatrists and doctors.
If I had one tenth of the knowledge I have now about the risks for developing Alzheimer’s early in my life, I might not have gotten this horrible disease. I know I can analyze it until my face turns blue, it’s not going to change a darned thing.
Wish I had a better sense of humor
I read on http://www.alzconnected.com about my email friend who has been diagnosed with probable Alzheimer’s is moving on with her life, making changes. She says her husband who is not the father of her grown children, is miserable with her, and she with him. He is not cut out to be a caregiver, she says. She lives in the great lakes region and now plans to go live with her ex-husband who is in California, and be near her daughter, who is helping her with the move.
Even with probable Alzheimer’s, she is able to change her life and move in a direction that brings newness and possibility. She claims that CBD oil is what saves her and allows her to be functional. It’s legal in her state. My daughter had been getting it for me, and I was taking it for a while, but there is no more now. This woman swears by the stuff. She says that without her dose of Rick Simpson oil before bed, and Charlottes Web CBD oil in the daytime, she would be a “porch sitting drooler in 3 days”.
I think it’s actually her soul, spirit and spunk that saves her. She’s funny (porch sitting drooler!!!) and even in the throes of a co-morbid recent near death illness, she has a sense of humor. She has been on the forum for years, I see that she’s been posting since 2013, which means she was diagnosed 5-6 years ago. So I know that she has progressed slowly. I’m a fast progresser. This began for me around two years and eight months ago, starkly and suddenly.
Taking a shower
Getting from my bed to the robe and slipper socks that I leave on the chair, putting these on and going down the spiral stairs, over to the list that tells me what to do, which sits on the kitchen island (that I have written the night before to guide me through the next day) is the first hurdle of the day.
I took a shower. It was a big deal. I pushed myself and managed the steps of washing my hair with shampoo, rinsing, putting in conditioner, rinsing, washing my body parts with a washcloth and soap, dealing with the many strands of my curly hair falling out in the process, and curling around my fingers. Then the thought struck me, how the hell did I deal with all this before I got sick? How did I cope with this hair and what were likely the simple steps of taking a shower and getting dressed? How long did it take then? Was I freezing as I am now when I am wet and slow? Getting out of the shower, and putting a big towel around my head turban like, drying my body with the other large towel is a transition. Transitions are hard now. Task switching is hard.
Then I sat on the toilet seat and wept.
Finally, I pulled myself together, brushed my teeth, and dried my hair. I took each article of clothing off the hanger one by one, making sure the labels were in the back, and got dressed. Slow process, but each time I am able to do it, is a small triumph. I do it every day, but nevertheless it is a small triumph that it gets done. It means I can participate in my life. I can show up and not look like a stringy haired demented woman in a robe. Being able to get dressed is something that people do every day. Alzheimer’s which I picture eating up my brain like a Packman on steroids, is making this important activity of daily living, harder to do.
Out of focus
I am attempting here to assemble memory, analyze my experience, and connect the dots in my fragmenting sense of self. The more I reach for legibility, as for the flicker of a memory, the more it slips from my grasp.