Knowing that you do not know is the best.
Not knowing that you do not know is an illness.
Truly, only those who see illness as illness
Can avoid illness.
The sage is not ill,
Because he sees illness as illness.
Therefore he is not ill.
I am humbled by the words of Lao Tzu, but I am not a sage. I have an illness and I am aware and know it has robbed me of the life I have had. I know I am progressing in this illness. I do not know when I will not know this.
For the thing which I greatly feared is come upon me, and that which I was afraid of Is come unto me. I was not in safety, neither had I rest, neither was I quiet; yet trouble came. --Job
It’s been over two weeks since I went to New York by myself to the Rubin museum program for people with dementia. The glow of independence that came with the courage to venture out alone and travel there, has dimmed. The days following that spark of triumph, I sank.
Keith is gone, and with him the regularity of walks and Scrabble, speaking Yiddish, and hearing his stories.
One friend I love, who was visiting me for months, has told me he is taking a break.
Great sadness followed. Please know how important seeing your smile is to me. While it’s the prerogative of people to disengage from difficult situations, please know that people with dementia need more friendship, not less.
Abandonment. I had a mother who was not able to find comfort in herself. She would get up at night when everyone would go to sleep, and pace the floor in the living room, wailing into the night. It was relentless. I would hold my hands over my ears until sleep overtook me. She was inconsolable. I did not know it was dementia. I thought she was crazy. Is it the same thing? It is said that dementia robs a person of their normal emotional self-control.
I should not have covered my ears when my late mother railed into the night. I should have gotten up and led her gently back to bed. Gentleness and communication. Not disciplinary action. Not withdrawal. Do not abandon the person who has dementia.
I’ve questioned my husband, “Do you want to sell the house and then place me into a facility for people who have Alzheimer’s in Connecticut? Is that what you want”? He says yes let’s go there and see it. At times he is at the point where he willing to sell our home and place me. I am not incontinent, can dress myself and feed myself. I’m oriented and find my way around. Of course, I don’t want to go, but being yelled at and called the word that rhymes with witch, left alone to sit in silence, eat in silence, never a touch or a hug from the man I married, makes me forlorn. Wouldn’t it make you forlorn to be treated in such a manner?
I fear placement. But he is not able to deal with my dementia, and the disease only gets worse. What to do? I read the posts from spouses on www.alzconnected.org who run out of energy and compassion. They become depressed, remove themselves emotionally and place their spouse if they have the money to do so or have worked out the insurance. A few of the religious ones who have the spark of spirituality and love in their hearts, seem to be able to weather the storm of this horrible illness, get help at home and keep going. They know it’s not the person’s fault that they got this disease. They walk the walk, and know they are walking the person home.
So I’ve learned to give him his space and stay away from him when he needs to rest. He texts me to check on me. He’s a great texter. Sometimes he lets me know he is on a different floor in our home by texting me. He has a way to follow me on his phone. He is watching from afar.
His back has been very bad, and he has gone to the chiropractor, gone to a physical therapist, had acupuncture. He has done things that have aggravated his condition. He seesaws between self-destruction and self-care. I am a constant presence and he tries to escape it by shutting himself away.
My daughter. Be patient I beg. Of course, she can not possibly comprehend what I am experiencing and she is angry and tormented herself, having lost the ballast of her ship, her mother, lost the mother she knew, replaced by this alien being that is the me I have become and am becoming. She recommends hiring another caregiver. She wants little to do with this. When she comes here she is stern and demanding that I comply. Has told me that her father should have left already. She is so angry. It’s all so unfair, I know. If she knew anything about the progression of Alzheimer’s, how could she, my own flesh and blood, say he should have left?
I watch her flee, I call out…”I am still here…I am so sorry”.
I have to live with this. There is no one who is going to save me. Clinging is not the answer. No one is going to save me. Friends and family can only stand by and hold my hand, temporarily.
I have compared myself to those who do not act as I do and say they have been diagnosed with this disease. They are calm and have a sense of humor. One of them says that a pity party will be a lonely place to be, because no one shows up for that party. He is right. So why can’t I be more like him? Probably because he’s at a much earlier stage in the disease.
I’ve seen the ones who are further progressed with their home health aids, or caregiver/ spouses who cart them around. They could not possibly live alone without assistance. I know the difference between progressing Alzheimer’s and mild cognitive impairment. I have the former. Yet I am maintaining as much independence as I can, because I want to remain in my home and be able to live in my community. The alternative is the specter of selling my house and putting myself in the hands of an institution that will take over my care. I will be unfamiliar with the place. Will probably be medicated. I will not be able to walk to familiar places by myself as I do now, will not be familiar with anyone and will lose what little freedom is left.
There are no home health aids coming to my home now. For now it’s better this way. Ruth has been coming over to see me several times a week, both when my husband is here as well as when he’s not, and has invited me to her apartment, where I finally have a destination in this town. It’s been great and I am thankful to have a friend I can visit who is so welcoming and accepting. Today I went there in the early evening. Yesterday she came over and I read to her, then we walked to the bank and I deposited a small check to my bank account, used my ATM card successfully, remembering my pin number and handling this as I had in the days when going to the bank was no sweat. I showed her where we used to live when my husband and I first moved here, and reminisced about taking my son who was three years old out for Halloween trick or treating. I had dressed him as a carrot, made a hat for him out of oaktag that I cut out and painted to look like carrot leaves, and I dressed him in orange clothes.
We were walking along the main street and I saw a man who I’ve known for 35 years, who has a daughter who is my son’s age. I met him when he was married to her mother and our babies attended the same play group. He divorced her and remarried a woman with the same name as his first wife, and had two sons, both of whom were my art students. I said hello and he came over offering to catch up with me about our lives. I smiled and said it was too complicated to get into. No announcement that I have Alzheimer’s. I don’t have a close relationship with him, never did. Running into him on the street was quick and pleasant. His life is going swimmingly I can see. His sons are brilliant and talented and his wife, a musician, owns the coolest bookstore in town which has become the center of all things artistic, literary and musical. No sense burdening him with my story. A wise choice. Ruth and I walked up Stevens Tech hill to Castle Point terrace through Elysian park and over to 11th Street and turned towards the river and over to her apartment building. She uses a walker but it doesn’t stop her from being adventurous, active and going places.
Before this happened, I was always having an adventure. Life was an adventure. The highs and lows. I was able to ride the crest. I was sailing, tossed on the sea of life, and always regained my balance. I was a teacher, a mentor, took many of my students to Europe several times – to Italy, to Greece and France. After my husband moved to Connecticut, I would venture out boldly. The documentary I directed and produced led to the Fulbright in Poland, a full year there living in the former Jewish ghetto in Lodz, teaching at the university, organizing a film production. After that there were presentations in Israel where I met long-lost cousins and saw Jerusalem and Tel Aviv. Then back to teaching here followed by more presentations in Poland, in France and Israel. I was intrepid. Until 2014. That was the last independent trip. I was invited to present the Lilliput project at The University of Jerusalem, and was intent on finally finding a producer for the film. The film that was to be my breakthrough movie became my downfall. The film about a dwarf who hid in garbage cans during the Holocaust and survived, based on a true story about a little person who had been my father’s friend from Gombin. The film that was inspired by seeing this dwarf’s photograph on my parents dresser as a young child. I had driven myself crazy trying to attain a goal I could not achieve. Curiosity killed the cat. It would have been great https://vimeo.com/91234297
I love my children and they loved me, when I was well. But they no longer needed me, when they were ready to leave the nest. Empty nest syndrome. The deep mourning I felt when they both moved away and didn’t need me anymore. That was between 2012-2013 and I became depressed. I so identified with being their mom. I had been cast aside by a husband who was never really able to find solace in being with me, living as he did for nine years in another state, and visiting me for a day or two on the weekend. Then he returned. He returned after I had done all the heavy lifting, and the kids were launched.
After years of finding ways to manage by myself. Renting bedrooms to Chinese engineering students to make ends meet. Working two jobs, one as an art and art history teacher, and another as an adjunct at NYU. Managing the house and overseeing the rentals to tenants. My son got married. My daughter moved in with her boyfriend. My sister refused to honor my late father’s will. She refused to have his will probated. She simply kept everything. She railed at me “you killed mommy”, after I tried so hard to help, flying to Florida to see her every two weeks for the two years. She was in the hospital and in very late stage for two years after a stroke brought on by being administered doses of Haldol. I brought my father to New York so that he would not be alone in Florida. He was in failing health, and I asked him to come and live with me and my family. He decided to live in my sister’s home. She was his favorite. He paid off her mortgage, made her the executor of his estate, built an addition to her home. I had to have surgery, a myomectomy for a bleeding fibroid in which I lost 50% of the blood in my body and my hematocrit went down to 5.3. My sister didn’t believe I was having major surgery. I had a job and was recovering and when I was able to see my father she would listen to our conversations on a baby monitor she installed in his room. I took him to Columbia Presbyterian hospital where the doctor told me she was overmedicating his Parkinson’s disease and that he was hallucinating. He did not want to live with me. He made that choice. My mother died in 2001 two weeks before 9/11 of pneumonia and late stage dementia, and my father died in August 2006 of cardiac arrest. My sister was in her ultra Orthodox Jewish phase then, and sat on a low box during the Shiva. She called out loudly to me in front of a group of people who had come to pay their respects, “Don’t come here to collect!” These are things I remember, and they are the truth.
I was exiled in my family of origin, and I am now exiled within my own family, the one my husband and I created, because of this disease.
We were flooded in Hurricane Sandy. One of the worst homes flooded here. We had rebuilt the downstairs, fought with the insurance company which tried to cheat us, had to take out a home equity loan, finally had rebuilt everything on the ground floor, everything was ruined. We contracted a beautiful new kitchen, bathroom, new appliances, a generator and sump pumps installed. I had previously dealt with three termite infestations (the pesticides likely impacting me and potentially contributing to the development of Alzheimer’s, along with multiple anticholinergic medications prescribed by psychiatrists that I should never have been on). I thought the worst was behind us. I hired a young man, a friend of my daughter’s boyfriend to plant a beautiful garden in the backyard. My son got married and bought a house in the suburbs. My daughter started to freelance at a multimedia media company and was climbing the rungs. Everything was going to be okay. The house was manageable. The kids had their lives. My husband finally bought a car after years of taking the Metro North to visit me on weekends. His plan was to work remotely two days a week and drive to Connecticut the other three. He moved back. I was working. And then this happened. Not all at once. First came the depression and anxiety. A changed sense of my reality. By the summer of 2015 I felt that my thinking was scattered. My personality which was never easy, changed and I could not bear the anxiety. I had been weight training and exercising but no amount of exercise calmed me. I became angry with him for having abandoned me for 9 years and here was back as if that had never happened. I could not adjust to his presence. Then the medications for depression and Ativan and Klonopin and a paradoxical reaction in which I lost my formerly normal sleep cycle and made me stutter. Detox from the meds and then a downward spiral that ended with the diagnosis of Alzheimer’s and progression.
I do remember telling him that instead of moving back, I wanted to move with him to somewhere in Connecticut. I no longer wanted to work. I was burned out. I had been pushing myself beyond the brink. He thought it was odd that I wanted to move there, and he moved back. I know now that this was developing for a long time. The preclinical phase can go on for a decade or longer. I was under way too much stress for far too long. The dam broke.
I wonder how long this has been brewing. This disease. There were signs. I remember once walking through Church Square park and looking down the street towards the hospital with its new emergency room wing. I was disoriented and for a moment did not know where I was.
I remember that I wasn’t able to learn to save art images/files in a program that my colleague used for teaching art history. He showed me how to use it several times, but I couldn’t get it, didn’t understand the simple procedure. I continued to use links from images I’d find on the web and would email these to myself. I created my own way to save content. My own way ended up taking many hours of research, and each time I would teach the class, I would have to recreate this content. In 2014 I noticed I was having trouble remembering certain students names, and did not remember some of the parents names. I lost my wallet on the bus. I lost a Movado watch. I would constantly forget my keys at school. I had multiple passwords for multiple accounts, and kept them saved on my computer. I couldn’t remember them.
Anosognosia is a deficit of self-awareness, a condition in which a person with some disability seems unaware of its existence. In those with Alzheimer’s disease it is manifested as poor awareness of deficits.
I think I had Anosognosia early on and likely had mild cognitive impairment before the onset of Alzheimer’s. I was unaware of any deficits and pushed myself. Because I was a gifted lecturer and inspiring teacher, it did not appear that anything was wrong cognitively.
I reached out to the rabbi and the synagogue, when I saw that foods were rotting in the refrigerator. This spoke volumes about what he felt. He quickly got better at making sure there was food when he saw that others were coming here.
Hear me my dear children, my husband. I mean you no harm. I am telling the truth. It’s a disease and because of it I can’t do and be who I was. You will have your lives, your days, nights and dreams.
People who are kind show up. Monique with her wonderful smile and easy manner. Her mom has been diagnosed with early Alzheimer’s, but is still pretty functional, gets around Manhattan where she lives by herself. Her mom has the slow later age type of dementia I believe, as she’s 78. It’s not what I have. Monique brought a tunafish sandwich and an apple. she is coming again tomorrow. Thank you. I remember the meals. The thoughtfulness. I drew this portrait of her that does not do her beauty justice.
I’ve been taking photos of people on my iPhone and I draw them. It’s an homage to them. They are being kind, thinking of me and showing up at this most difficult point in my life. It gives me purpose to have people visit me. I get up, get dressed and greet them, and they spend time with me in my garden, in my home, we talk and they tell me their stories, talk about themselves and their lives and listen. Some have had relatives who have or had this illness.
Alzheimer’s is a highly stigmatized disease, and it takes a certain kind of person to be inclusive and generous when it’s so much easier not to bother, and look the other way. I may not remember the name of everyone I have met recently or my students from long ago, but I do remember who visits me. Jeannie is Ruth’s sister and comes every week with meals for the day and some to freeze. Jane, Zehava, and rabbi Rob visit. Elizabeth comes. Her mother had early onset and was a brilliant woman who was diagnosed at age 54. Tara came for a while with her daughter. Emily is pregnant and with a young baby who is one and a half, won’t be able to do this much longer. Bob is Jeanne’s husband and comes to play Scrabble. Harry needs a break, he says. Now there is Ruth who is much more than a visitor. She’s a friend. Accepts me. I am grateful.
Joseph and his wife Diane drove here to see me on Saturday. I met him only once at The Rubin museum, and he has been reading my blog and sending me long emails about his faith and stories about his life. He told me knowing me has sparked a new level of thankfulness in him for the very things that people take for granted; getting dressed every day, ease in taking a shower, preparing foods, eating, sleeping, the simple everyday things that are now so difficult for me. In his youth he attended Stevens Institute and became an engineer. This town is a part of his past. He attended Stevens Academy which was torn down and now is a condominium building across the street from Church Square park. My friend Zehava lives in that building and has a beautiful two-floor apartment that faces the park.
Joseph, Diane and I walked through the park and from afar Joe thought he saw the statue of Athena. What he saw was actually a statue of an eagle, and below it, a high relief sculpture of Guglielmo Marconi, the inventor of the wireless radio. Interesting that in my research on this sculpture of Marconi, I learned that Marconi was a Fascist and Benito Mussolini was the best man at his wedding.
I try to connect the dots. I’m glad that I showed Joe and Diane the facade of the beautiful synagogue where my son and daughter were bar and bat mitzvah. Friends I’ve made there read my blog and they are the ones who visit me and some bring meals. Although it was a bit of a hike for Joe and Diane, as this is near the south end of town, somehow it seems apropos showing this to them, knowing now that Marconi was a Fascist, and that his statue stands in Church Square park. My small personal attack on Fascism of the past, and my interpretation of why history is important to the present. Ironic that it is Marconi’s vision of universal communication that ultimately lead us to Steve Jobs, and this computer that I am typing on. Yet he was a Fascist who wanted to own the airwaves.
Which brings me to G-d who is a constant presence in my life and the one who is holding my hand and my heart. I’m alone with G-d now. I can try to connect the dots of history and try to untangle the question of “why me?” But I do not know. My brother in law has told me it’s my karma. My sister has refused to see me though I have begged her to come and reconcile, forgive each other. I will likely never see her again.
I only know my number was called and there are some beautiful souls who are showing up at my door and reading this. They are wondering as I wonder…why did this happen to someone who gave so much, was so strong and now needs care at an age where others are enjoying life and adapting to aging? How long before I am not able to even ponder that question?