The confusion and anxiety were too much. I could not get there without massive support getting ready and out the door, where I would walk the short distance to work. Bad weather felt like a tsunami. I would have had to be responsible for their young lives. I couldn’t risk that.
As far as the quality of my teaching last term, the students were not receptive to my dour mood and ineptness, which I laboriously tried to cover up. My insecurity and fear were activated every time I tried to teach a class. I could not remember names of students. I could not remember names of colleagues I had known for decades. I could not remember content. I had trouble handling the art materials, and grew an aversion to clay. Somehow I did it for a full year. I had an assistant who now will likely go after the job. I have to learn to accept this. My ability to be a regular contributing member of society as a teacher, is gone.
This is the time when the announcement is heard over the intercom of the airplane. We are about to make our descent. Fasten your seat belt, it’s going to be a rocky ride down.
Grief. More grief. Inconsolable grief. I am sick of it. Sick of dying in this way. I am no longer living a life worth living. The mountain of losses is mounting. A person can only take so much.
The great late actor, Paul Newman said ““Bette Davis said it best of all: ‘Getting’ old ain’t for sissies,’ “ he said eventually. “I mean—suppose, to do it right, it ain’t for sissies.”
I am not doing it right. I’ve turned from a brave and tough lady into a sissie!
You are not interested to know that I can still boil water in the kettle and make tea. I can do dishes. My life is reduced to a list of what I still can do, which ain’t much. Paul Newman, I need some of that cool you had. I have become very uncool in this disease.
Where has my courage gone? I do think of The Wizard of OZ and the Scarecrow who only needs a brain, the cowardly lion who needs courage, the tin man who’s heart is rusted and needs a new heart. I need courage to face this disease, I need a better brain, I need a heart to care about others and show it. I am sick of myself and my rants, and so are you.
What you want is a story like that of Aron Ralston, a man who lost his arm mountain climbing in Utah, when a boulder fell on it and he had to cut off the limb with his pen knife, after laying pinned down for five days with only a bottle of water.
People love the triumphant spirit, carry on in greatness and ecstasy, despite pain and agony. The romance of daring. Not this. Not Alzheimer’s. Not me in Alzheimer’s and how it has affected me. I have so little of that. It’s triumph to get dressed. There is no cutting away a part to get free. There are no prosthetic brain parts to replace or repair what has been damaged.
I identified with the homeless man I saw today, sleeping inside the empty store front by the door on the main street. With a failing appetite, I have likely eaten less than he has today. I live in a house where my husband keeps me fed and provides me with shelter and food. This was the house in which I was a normal energetic mom, a teacher, and artist, a filmmaker and a friend. Now there is none of that. No job, no social life, no cure.
That poor homeless man who was laying there amidst debris, is not loved. He is simply a sad case. With Alzheimer’s that is the metaphorical me – sad case – turn the page.
I will never be famous, and I will not be remembered for much, despite how hard I worked and how much I loved and how very creative I was. I will be forgotten. many are called but few are chosen.
My family will go on without me. A hole in their lives for a time, and then a healing. They will enjoy a future I will not be privy to. My young daughter won’t have her mom there when she starts a family of her own, if she chooses to do that. I won’t see my little granddaughter, the offspring of my first born, my son, grow up. I won’t be here, and chances are I won’t be fully here for a good long time before I die. The late stages of the disease are the eraser of everything and everyone.
So I write furiously. Not the brilliance of a great writer, I know that, but this is a chronicle of what is happening to me. I have lost my career, and I am increasingly facing a life without meaning. I do not want this life. Whatever meaning my life has, I am aware of how marginalized I am now. The powers that be (therapist, neurologist, cognitive remediation counselor) all tell me not to broadcast that I have Alzheimer’s. My husband is a loner and very private. He does not want me to tell people.
Alzheimer’s makes a person crazy, and those who do lose their minds this way, go in pieces. First the short term memory and then the long term memory goes. walking gets harder. Thinking and reasoning is a thing of the past. My brain is a computer with a dying battery and loss of memory. There are sometimes good days. Passable days and a reprieve from the torturous losses and impairments. They are few and far between.
The most dreaded disease of all. I am losing my mind and aware of what is happening and I am not supposed to tell people I have it.
While I thought an Alzheimer’s support group would save the day, offering me friends with the diagnosis, and a way to be able to travel alone to New York, I see that there absolutely no one who can save me. The anticipation to meet others with the disease has been eclipsed by the reality that each person who has dementia, of one type or another, is different, and hey, each are dying too. These peaple range in age from their forties to late seventies. The personality we each have is affected differently. Some become dotty and lost. Some find a way to keep pushing and exercise and make a good routine that works. The famous ones like Pat Summit are dead. Greg O’brien is able to write beautifully and fights the disease that way. Some just fade away. Some run after their caregiver spouses with weapons. No two people experience the symptoms of the disease in the same way. One lovely woman in the Zoom chat support group is a famous food writer. She’s 79 and has a full life. She’s not a whiner or complainer. She does yoga and Qui Gong and carries on. She practices a ketogenic diet. She told me to find a publisher and write a book. She is a beacon in the darkness. She laughs.
I have lost everything now. My teaching job, my career, the love of my husband, the respect of my children, many of my friends. The very word Alzheimer’s breathes terror into them and they run away. I guess I did not choose the right friends. Or maybe it is that I was not a very good friend. OR maybe it is that people are crappy and they are afraid. I choose to believe the latter. People are afraid.
If it were ancient Japan, I would be compelled to commit Hara- kiri.
Hara-kiri is a ritualized form of suicide with roots in 12th century Japanese samurai warrior culture. Rather than be captured, a defeated swordsman would stab himself in the left belly, draw the blade to the right, then pull upwards. Encyclopedia Britannica adds that “it was considered exemplary form to stab again below the chest and press downward across the first cut, and then to pierce one’s throat.” Obviously, bleeding to death from a gut wound or suffocating from a throat wound is a slow and miserable way to die. As practiced by defeated samurai, it was meant as atonement. It also demonstrated enormous psychological courage, which was a way of winning back some measure of honor even in defeat.
I would at least be able to die with honor. There is NOTHING honorable and dignified about dying from and with an atrophied brain.
I live in a community that I’ve lived in for 40 years. I was respected. Now I hang my head and go down the side streets. Even that is a triumph over sitting in a chair in my house for 10 hours or more a day. I am no longer proud but I’m here despite that.
The photograph of the New York skyline is near my location. Zero in on me. Use your navigator. I used to be funny and had an edge. I am boring now. Tell me that if that’s what you feel. Be honest with me.
He still takes care of me, but with great resentment. He screamed yesterday, “I am glad I am going to work tomorrow so that I can get away from you”. The man I married, and devoted my whole life to…the man with whom I bore two beautiful children- a handsome and talented son, and a beautiful and talented daughter, and tried my best to create a good life for them and with them–that man, my husband who screamed yesterday, I am not your husband anymore, my caregiver, hates me and will be free only when I am dead (or in a nursing home, whichever comes first).
My daughter says I am dark and mean. How can a person gets as sick as I have become, and be hated by the very people needed to love and care for them?
My daughter does not reach out to me and try to console me with a call:
Hi Mama, how are you doing today? Are you making sure to walk around so you remember how to walk? Are you drinking water and eating so you don’t lose too much weight and become dehydrated? Are you lonely, mama? You must be very lonely, I know that your friends have turned their backs on you and that very few people care now. I am calling you to cheer you up and tell you some stories about what I have been doing. I love you mama, and as long as you are around, I will honor you and cherish you.
Fat chance of that sentiment happening.
I walked into the school and told the director that I am undergoing neurological tests and my doctor says it’s too stressful for me to work.
I myself had to make the decision to resign from my twenty year career. I feared for the students and feared for myself. I worked with humans, not a computer only as is the case with so many afflicted with younger onset. I could no longer do the work of teaching young students, because of the impairments. I could no longer get up and be ready to go and have what I need to function with me. I can not function as a teacher five days a week, with a diminished brain and hyper excitable, partially atrophied brain.
A man I met told me that the numbers of Alzheimer’s and other dementias are increasing because the prions that cause these diseases are in the water and environment. He thinks the disease is contagious. Maybe it is and eventually this weeding out of humanity will eliminate those of us who carry the gene.
In the meantime, I still wake up every day, and do not know how to live my life. I get confused about what to do first. I go on and on with writing, saying nothing, because it is nothing that is replacing the stuff between my ears.
Rinse and repeat. This torture has got to stop. I quit my job to protect myself and the students. I miss the room I taught in. I miss seeing my colleagues. I miss the vibrancy of life.