I was afraid, really afraid that I wouldn’t be able to write anymore, and that the blog was over. I couldn’t get started when I tried day after day, night after night. Mainly, it was a matter of not being able to get started. I know it’s not writers block. I know it’s a symptom of this disease. It’s the same thing as getting up and getting the day started. Apathy and confusion. Rigidity and physical malaise. Brain fog, or with me brain blizzard. Not being able to see the forest from the trees. It takes a lot to fight it. Hard to get started and hard to follow through on tasks. It takes all of me. So here I am about to dig in and begin. As long as I can write, I am still here, and as long as I can blog, I can communicate. Alzheimer’s be damned!
People, places and things. Those three words encompass everything, but it’s the details that tell the story. The details flesh it out, and how much progression there has been. But the problem with me is that I get lost in the details. Things are quite confusing now. There’s physical deterioration – difficulty walking and talking, going up and down stairs is harder to do; word salad happens often and I can’t put an order to anything that’s happened without the help of the photographs on my iPhone. These tell me the dates and jar my memory. But I CAN with some effort still write about the experience of living with this. Where to start? I’ll start with people.
This is a drawing of Dina who is a lovely woman who I wish I would have known while I was well. She’s a sociologist and her daughter was my art and art history student, but I never knew her well. In fact, I did not know her at all. She was just someone I would see dropping off her daughter at school, and occasionally greet her and say hello when we were both at the synagogue. Dina came to my aid through the synagogue. She read about this woman who has younger onset Alzheimer’s on a posting that the rabbi and secretary sent to members. She didn’t know I had been her daughter’s teacher. She did know that I could no longer prepare meals for myself, as that’s what the anonymous posting said, and started bringing lunches and dinners. She started visiting in September and has come about twice a month. At first I had a lot of trepidation about this. But once she started coming over, she confided in me that her brother-in-law had a stroke and is in a wheelchair and can’t speak. Obviously it was a serious stroke, and she has experience, empathy and a good deal of understanding that a person can suddenly lose physical and cognitive ability, and that the brain, this mysterious master of our lives – can be damaged irreparably. She had never met anyone with younger onset Alzheimer’s before, but she’s a sociologist, a good soul, and she is interested in people. Sociology is the study of the development, structure and functioning of human society, and the study of social problems. I think Dina knows that people with Alzheimer’s are still quite human and need to be treated as such, and it is a social problem that people who have Alzheimer’s are ostracized.
In my estimation, this is the age of Alzheimer’s (and other dementias). I’ve written that if this can happen to me, it can happen to anyone. The numbers of people getting Alzheimer’s and other dementias is increasing and it’s becoming an epidemic. It’s said that by 2050, there will be a ratio of one caregiver to each person who has Alzheimer’s.
Dina was also my grandmother’s name. My father’s mother who was in the Jewish ghetto in Gombin, Poland. She was among the 2500 plus Jews who were taken to Chelmno, the first extermination camp in the occupied Poland. They were put into the Einsatzgruppen vans and the exhaust was turned inside and they were asphyxiated. At Chelmno their bodies were burned and their ashes and bones scattered. My uncle Chaim was with her in the ghetto and met the same fate. My grandmother, Dina, was 53 years old when she was sent to Chelmno. Chaim would have been 25. Meeting Dina reminded me that it was my grandmother’s name. The grandmother I never met but was told these stories by my father.
Dina has a broad face and kind eyes. I snapped her photo when we went for a walk in the park. It was cold and she was wearing a blue jacket. She smiled the warmest smile.
My husband takes care of me. He is my primary caregiver. He has been devastated by the disease and watching me progress through it. He prepares my meals, makes my bed, and takes me for walks. Our relationship has no semblance to what it was. I know that without him, I would die sooner. I would wither away. He knows this as well. Lately he has been more affectionate. We have laid together in bed and cuddled. Of course we used to do this and much more all the time. We had an intimate relationship. This month we will be married for 42 years. Alzheimer’s has come between us. It has changed the dynamic of our relationship and virtually destroyed what we had – a marriage of equals. He became my caregiver. He takes me for walks, and lately is the one who walks me to Ruth’s. He walks me to my therapists office and picks me up. He helps me to cross the street. Alzheimer’s has done this to me. To us.
On Thursday, December 13, I had an appointment with the neurologist, Thomas Wiesnieski at NYU Pearl Barlow Center for Cognitive Neurology. I hadn’t seen him since last July, and I have progressed a lot since then. As I sat in the waiting room I snapped some pictures.
The woman above is Ursula Auclair, a social worker at Pearl Barlow. In July 2017 she invited me to attend a Reminiscence Group for people with Alzheimer’s. Everyone there was between age 80 and 96. There I was with my iPhone, feeling extremely out of place. The folks in the room bounced a balloon to each other, and were encouraged to air their grievances about their caregivers. She ran the group. A man named Boris sang a Broadway show tune. I pulled up the music for it on my iPhone. Clearly I was not like these other people. I had not lost all of my abilities and was participating in the way I knew how. I was vocal then, talkative, not withdrawn and at that time there were no speaking impairments. After attending two times, I sent her an email and asked her if there was a support group for people who were closer to my age and level of cognition. She phoned me and told me not to return to the group, offering no other options.
The woman being wheeled into the waiting room is an Alzheimer’s patient in her early 80’s. I watched as her 2 caregivers tended to her, removing her hat, adjusting her hair, crossing one leg over another for her. She looked like she was smiling. Later, after my appointment, I spoke to her aide. The woman had already gone into her appointment. I asked her about the woman and she told me that she speaks very little and does very little for herself. She said that 2 years ago she was able to dress herself, and spoke a lot. She said she naps a lot during the day, and lays awake in her bed at night. She said her demeanor is calm and content, and she was glad that she took care of an Alzheimer’s patient with this kind of nature, as she’d heard that some Alzheimer’s people are angry and violent. Again I was confronted with the misconceptions about this disease. Are people either calm and content, or angry and violent? This woman is in her 80’s and I guess she is taking the disease in stride. But I’m 64 almost 65, and I am not able to take this disease in stride. There is nothing worse than younger onset Alzheimer’s. It cuts a person down and destroys them when they are still strong and functioning, and little by little makes functioning, processing, living – impossible. It kills a person bit by bit, and since younger onset usually goes faster, it does this in a few years. I hate this disease.
My doctor wants me to take Memantine. He says it will help with confusion. I am too scared to rock the boat. I looked it up and see the side effects include diarrhea, constipation, dizziness, headaches, and CONFUSION. How can a drug which is supposed to help a person in moderate to severe Alzheimer’s have a side effect of confusion? This side effect is exactly what it’s supposed to treat. Confusion. I spend a good deal of time alone, and want to remain continent. If this drug causes diarrhea, I will not be able to handle it. I would be constantly on the toilet, because I would not want to soil myself. I know that there are no drugs to treat Alzheimer’s, that these medications have been around since the 1980’s and do not do anything but cause side effects. Of course I would want there to be something to help me. The reality is that it’s only my effort to walk, exercise (I do yoga and go on the recumbent bike) that keeps me going. He wants me to have another Spec scan or Volumetric MRI but the insurance rejected it the last time he ordered it. He said he would submit it again to see the estimate of further progression. Maybe the problem is that I so want to not progress further, and all this disease does is progress. I am trying to fight it. It’s a losing battle. How to remain calm and happy when the prognosis is that things will only get worse? How to be like the woman in the wheelchair with a smile on her face? Just let it happen? Do I have any choice? Wiesnieski said exercise will help. I think that is the only thing that he is right about.
I showed the doctor how my walking has changed by walking down the hall and asking him to watch. He said it looks like mild discoordination. I lumber from side to side. Ruth says I shuffle. There is a feeling of gravity when I walk that makes me feel like I’m being pulled down. Nothing about the way I move now feels mild. This neurologist is so jaded about this disease. Unless he sees me unable to walk at all, he sees my symptoms as mild. I know that they are not mild and that it’s global impairment. It’s not that I can’t walk. It’s that I am unable to process movement with thinking. I feel like there is a delay between initiating movement, walking, talking and doing. It’s like the synapses are lagging behind, and this explains why I have to push myself to do anything. My therapist, Pamela, asked me why I go to these neurologist appointments if there’s nothing he can do to help me. I guess it’s a way for me and my husband to chart my progression, for whatever it’s worth. As long as I’m even aware of my progression and can communicate, then I am still in the loop.
On the ride back from the neurologist, we passed Macy’s Herald Square. There was a huge sign made up of little lights that said “Believe”. I asked Ruth what she thought this meant. She thought it meant they were telling us to believe in the birth of Christ. I looked it up on my iPhone and it showed that it was there to promote writing letters to Santa for the Make a Wish Foundation. For every letter received Macy’s will donate $1 up to $1 million to grant the wishes of children with critical illnesses. Nice sign. Believe. Believe that wishes can come true?
I used to go to Macy’s all the time. the last time I went into the store was when I shopped for the dress and shoes I wore to my son’s wedding. That was in January 2014. that’s almost five years ago. Before this disease came for me. The dress is still hanging in my closet. It is a gold sequined floor length dress. This photograph was taken in the dressing room at Macy’s when I decided to buy the dress. Within a year and half everything changed and the disease started to take over.
My husband turned and headed up Seventh Avenue passing the entrance to The Long Island Rail Road. For many years, this is how I would travel to my sister’s home in Woodmere, Long Island. For over 27 years I would take that railroad to see her. She hasn’t seen me now in almost five years. The last time was when she came to my son’s wedding. I can no longer travel to see her, and she will never come here. She does not want to see her sister who now has Alzheimer’s disease. She will likely never see me again.
My husband turned on 39th Street and headed to the Lincoln Tunnel, for the drive home. I looked up through the roof window of the car, and snapped a photo of the buildings I see when I look at the New York skyline from Hoboken.
People, places and things make up my experience. I’ve become the observer now. I walk down memory lane remembering the life I had, and lament about how limited my existence is now. I was a world traveler. I lived in Poland, visited Germany, England, France, Italy, Greece, the Russian Ukraine and Israel. I was in Spain and Morocco as a teenager. I thought that someday my husband and I would go to Asia. I wanted to see Japan and China. That will never happen. My days are limited now to the vicinity that my husband can drive us, and to the places that I can still walk to. My husband is glad to see me get up off the couch and exercise on the recumbent bike. He takes me for walks around this small city. Today I walked .81 of a mile, as it shows on my phone app.
A new habit or quirk, has been to take a photo outside my patio door when I am finally up and ready, having dressed, groomed and brushed my teeth. I go to the patio door and open the shades and snap a picture. I guess this can be thought of as a conceptual art piece. Or a projection of the loneliness of dealing with the isolation of Alzheimer’s. I then take a selfie and send it to my daughter, to show her that I am up and dressed. When my husband is at work I send it to him as well.
This was taken on Saturday, Dec. 8. I snapped it when my husband was walking me to Ruth’s. It’s a Christmas display outside of a house a block away. I used to think it was odd that some people who live in this city, would never go to New York and would hardly ever leave this town. I used to think how small their lives were. Now my life resembles theirs, but not because I have no reason to go and see and do. It’s mainly because I can’t. So I look at things in my environment, and photograph them to remember.
On Thursday, Dec 6. I had an appointment at the hair salon. I go every six weeks, but getting there has been increasingly harder and functioning while I’m there creates anxiety. It’s only a half mile away. Ruth was going to come over and walk with me and we were going to come back here together. While I was stark naked in the bathroom trying to get dressed and ready, she called and said she couldn’t come with me, and had to go the eye doctor. Something was happening to her right eye, which turned out to be macular degeneration. She told me to cancel the appointment and postpone it for a week. This was the beginning of Ruth not being able to spend as much time with me. She has her own degeneration to deal with. I got dressed and ready and pushed myself to eat and set my alarm for the time I would have to leave my house to get there on time. I was concerned about how I would remove my coat and sweater, and how to hang them up so I could put them back on myself when it was time to leave. I didn’t know if i should put my sweater under the coat when I hung it up, and how I would put my sweater on, while I held my coat. I was concerned about dealing with my wallet and paying, and all the details of coordinating my things. I was concerned about what to talk about to the hairdresser, who does not know I have Alzheimers. I am very quiet when I’m there. I’ve become much more withdrawn since I noticed nonsensical babbling coming out of my mouth, and aphasia and word finding with stammering, has happened. I used to ask a lot of questions and engage with others while I was there. I don’t do this so much anymore. I asked my daughter to be available to text and my husband too. This is the anxiety of Alzheimer’s. Just going out and functioning in public places is getting harder. The triumph in this was that I was able to go there myself and get my hair trimmed and roots colored, pay for it and get my wallet back into my purse with the credit card and receipt inside, and get home by myself. Every action I take requires procedural thought and action, and my physical motions, actions, and thinking are really out of sync.
On Saturday, Dec. 15 Santacon was held in Hoboken. Santacon is an annual pub crawl in which people dressed in Santa Claus costumes parade in several cities around the world. We passed a bar and saw a bunch of people dressed in Santa outfits. The outfit with buff abs and a tie and suspenders inside a Santa outfit looked unique and particularly clever to me, and stood out. My husband then walked me to Ruth’s and I spent the rest of afternoon there. Ruth was laying under her blanket sitting in her armchair the whole time I was there. We have different forms of degeneration. She is declining physically and it’s hard for her to move around, and now with her eye and macular degeneration she is more inclined to just sit and rest. I don’t think sitting is too good for her, but she says when she walks a lot she has too much pain. With me and my Alzheimer’s and her and her physical decline, we meet somewhere in the middle.
On Wednesday’s, Ruth’s sister Jeanne, usually brings me a meal and stays to play Scrabble. Ruth is almost 73 and Jeanne is 77. I’m 64 almost 65. I would not have been friends with either of them if not for Alzheimer’s. They never knew anyone with younger onset, and their empathic natures brought them into my life. They are both rare in that they’re wise and compassionate, and willing to learn. But they’re both dealing with the setbacks of their own aging and their ability to be engaged with me is limited. Before playing Scrabble with Jeanne last Wednesday, I wanted to see if I could still do this Ravenberger puzzle that says it’s for kids 4+ years of age. It’s been on my table since the summer of 2017 and it used to take me 9 minutes to do it. This time it took 17 minutes. Different parts of the brain are used for different actions, and it seems that the visual, perceptual and physical are more affected in me. I say this because language and words when I play Scrabble with Jeanne are not so impaired. Our Scrabble scores that day were me- 324 points, and Jeanne 202 points. I usually beat her at Scrabble, but she has beaten me once. I can see how to add a letter to words and build a new word. After Scrabble, I set up a plate of the food Jeanne brought. That’s when the confusion really begins. The actions I need to take transferring food to a bowl and a plate, pouring the drink into my cup, heating the food in microwave, bringing it to the place where I sit at the kitchen island, and then chewing and swallowing are tasks that I have trouble with but still can do. I used to love food. Now the procedures of eating and cleaning up after myself, are tasks that I have to concentrate hard on to complete. There are many steps to it, and I get anxious when Jeanne wants to leave before I am done. For me time is endless now, and people have lives and need to leave. It’s that moment when they go that is hard for me. Being alone is hard for me. Which is why I write so as to be heard. Makes me feel less alone to describe my experience.
This is photograph with drawing that hangs on the second floor in our home. It was a gift made by an amazing photographer and artist named Geanna Merola, who was a friend for years, who used to live in this city. I’ve seen her a few times over the years, but mostly we kept in touch on Facebook. She doesn’t know that I developed Alzheimer’s and would be very sad to know, but I remember her and think of her with love and respect. The image was taken in 1983 when my son was a little over a year old and I was 29. It was taken when Geanna and her husband Erik visited us when we rented a house one summer in Palenville, New York, which is in the Catskill mountains.
Images are what helps me to remember.
See the dish running away with the spoon, and the cows that she drew on the photograph?
It’s inspired by the Mother Goose rhyme, Hey Diddle Diddle.