Drawing of my husband with his eyes closed – November 2019
I had a dream that I was normal and didn’t have Alzheimer’s. I saw myself walking normally, happy, laughing, and not at all impaired. Just the woman I used to be. Sociable, gregarious, not agitated, not depressed. In the dream, I was in a large festive bar and met a man, a robust fellow, who was very enthusiastic, friendly and full of life. I looked for my cousin Joyce to introduce him to, and found her and invited her over. She was just like I always remembered her to be, full of life, cracking jokes. She was glad to meet him. The only strange thing was that as he spoke to her, she started to levitate. He was very tall and she is short, and somehow his gaze made her rise up to meet his height, so they were face to face. Yet even that seemed pretty normal until I woke up and realized it was a dream.
I didn’t want to spend Thanksgiving alone with my husband at home. I wanted to see my grandchildren, although I was nervous about being with extended family (I’m at a point where I’m very sensitive to sensory overload) . I wanted to be with my four year old granddaughter and the twin grand babies, who are now just over a year old. They change every week and are growing fast. We hadn’t seen them since our granddaughter’s birthday party at the beginning of November. Sara was just starting to walk then and Michael was crawling and pulling himself up on furniture to stand. Now they are both walking and picking up toys and exploring. They are both adorable and it’s exciting to see their growth and developing awareness and unique personalities. I snapped photos and followed them around as they toddled from room to room.
For days I was concerned about getting agitated at this dinner, because when I am around a large group of people that is what often happens. I’ve become so self conscious about how much I’ve changed. It’s hard for me to follow conversations when there is more than one person speaking, but in this case, they speak Russian (which I don’t understand at all), and switch back and forth to English. I didn’t want to be sitting there with a dumbfounded look on my face, feeling lost and alone.
At our daughter in law’s request, my husband prepared an outstanding mashed potato dish, turkey stuffing, fruit salad, and bought a berry cake. Our son’s company gave him a turkey, and our daughter in law baked it. Her mom and step father brought Russian salads and smoked salmon with crepes. It was a cuisine of blended cultures and everything was delicious.
I was relatively at ease, which means I was talking and commiserating. Everyone enjoyed the food. Since our daughter in law’s step father had been ill with what appeared to be symptoms of a very bad cold or flu, the extended family left soon after dinner and clean up. My son retired to the piano room and began playing a Chopin nocturne and baby Michael, who loves music, walked over to the piano bench and swayed responsively to the music. My son is kind of quiet but when he plays piano he communicates through his higher self.
Sara toddled over and gave me the sweetest dimpled smile. I found a place to sit amid the piles of coats and books stacked on the settee. Ellie pranced around in her pink princess Aurora dress. She tossed a ball high up into the opening in the atria and beckoned to me to play catch. Then our daughter in law called out to my son from the kitchen, that it was time to put the twins to bed. The last time I was there, I went upstairs with my son when he got Michael ready for bed. I thought it would be okay to do that again, so I gingerly followed him, carefully walking around the piles of clothes and shoes stacked against the stairs. We went upstairs to the bedroom with the twin cribs, and I went to sit down on the rocker. Then my daughter in law called from downstairs to my son, “make sure you cover the rocker before she sits down”. He dutifully unfolded a diaper pad and placed it on the chair. My sense of smell has become particularly acute, and the perfumed synthetic smell of that diaper pad, a large piece of blue plastic with fuzzy cotton backing, wafted up my nostrils as soon as I neared the chair, and it bothered me a lot. I didn’t think it would be a crime if I sat in that chair without that diaper pad. Okay, I was wrong to remove it and sit down, but what followed was outrageous. My daughter in law stormed into the room and started screaming at me at the top of her lungs, and threatened to throw me out of their house, because I sat on her nursing rocking chair without this cover. My husband rushed in and demanded I come downstairs and said we have to leave. My daughter in law followed, continuing to berate me, saying her grandmother had had Alzheimer’s and didn’t behave like this. I said “your grandmother was in her 90’s and no, she didn’t have Alzheimer’s, she had colon cancer”. I said “you are so concerned about my sitting on the rocker with my street clothes, but not concerned that your step father has the flu, and has been coughing near the babies all night”.
Anyway, a nice Thanksgiving dinner ended very badly because I disobeyed and sat on my daughter in law’s rocker with my “street clothes” (as if I spend a lot of time on the street). She made me feel like a leper. I was shaking in the car on the drive home. I couldn’t quell the agitation. i was whining and chattering away and my poor husband needed me to be silent so he could focus on driving in the dark. I texted my daughter in law and expressed my dismay at her wrath. She wrote back, “sorry I screamed at you, but you shouldn’t do things that will make others upset, because you feel like it. Whether you are dying or not is not an excuse!”
I texted her mom and explained what happened. She is much more level headed than her daughter, obviously, and wrote me, “she is under a lot of stress between three kids and a full time job”.
I don’t meet her expectations now that I have this nasty affliction. I suspect I never met her expectations. Sitting quietly and withdrawing into my phone is not okay. Because I move awkwardly and I’m slow, it’s impossible to play vigorously with the children. I even have a very hard time squatting now and then standing up. Daughter in law took offense that I followed the babies around snapping photos rather than playing with them. I can’t seem to do anything right. My confidence plummeted.
Is it fair to expect others to understand that it’s the disease that has caused me to change? Before they were married my son and his soon to be wife lived in a separate apartment upstairs in our home. I was healthy then, working and often shopping and cooking. I’d bring them bags of groceries and treats. I’d cook for them. I was always generous and aimed to please. I introduced them to my (then) friends and colleagues. That was only five years ago. Obviously the illness I have has taken a toll on my functionality and has changed me radically. The progression has been fast. I retired from teaching only 2 and 1/2 years ago, pushing myself to continue as long as I could. At that point I was was walking normally and had no verbal impairments. What was obvious to me then was that I could not function with impaired memory. If I put something down on a surface, my coat or my books or art supplies, I would immediately forget about it. I could not track my belongings or materials I needed for teaching. I was forgetting students names. The progression of the illness was accelerating, and the stress to keep up was intolerable. So I retired and my husband marched me down to the social security office where I applied for Compassionate Allowance Disability due to Alzheimer’s. Some people progress rapidly and unfortunately I am one of them.
It’s been 2 and 1/2 years since I retired. Initially I was able to go the gym several times a week, and remained active. I could still walk for miles then. About a year ago I began having problems walking. My balance became affected and as I walked, I felt a distinct sense of gravity pulling me down. It became harder to stand up from a sitting position. Motivation to move is affected and the previously natural inclination to get up from my bed and start the day requires pushing myself very hard. Along with this I have developed symptoms of aphasia. Not only has the sound of my voice changed and sounds metallic to me, childlike and tinny, but the order of the words I hear myself speak, are often disordered. I’m not sure when the babbling started exactly. Perhaps it was a year ago that I began to hear myself say things that made no sense at all, as if an alien had invaded my brain. Streams of words that have nothing to do with conversation would erupt as I sat with my husband. I began to narrate my actions out loud as I did things like wash a dish or a cup (“now take the sponge and put soap on it and wash the cup, dry it and put it away”). My husband would tell me I was babbling, and I would apologize and say I would stop, and less than a minute later I would be vocalizing again, sometimes coherently and sometimes incoherently. Now I notice when I write with a pen, letters in words are sometimes missed, and I need to correct as I write. The act of writing is obviously important to me. If my speaking is impaired and writing is challenged, then I will not be able to communicate.
Now I spend the bulk of my time alone. My husband is quiet, a reader and often withdrawn. It’s an effort to remain engaged. The fear I have of becoming that empty shell of a person I have seen at the programs, people who have become mute, is ever present. Is it realistic to pray I do not last long enough to become that?
People who have Alzheimer’s disease are extremely sensitive to body language and spoken language, and may easily react with anxiety to a frown on your face or tension in your voice. There needs to be an awareness of their reaction to your moods.
Please read this PDF called Understanding the dementia experience http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
I don’t know how long I will last with this disease but I am sick of it. I can’t do the things I used to do. I used to single handedly throw dinner parties for a dozen or more people preparing all the food from scratch, while I was still working full time. Now, I’m a prisoner of my brain and body, my broken vessel that has forgotten how to cook, how to entertain, how to do so much. Just getting up from bed and putting on my robe, and walking down the stairs is a sequence of steps I have to do carefully, and with effort. I lay in my bed for hours in the morning, unable to get started, to get up and start the day. Now that the winter is almost here, I get cold so easily and my body is becoming stiff. My sleep is fragmented. I fall asleep for a few hours, wake, and then sleep again for a few more hours. I haven’t had 7-8 hours of consecutive sleep hours since 2015. When I wake my hands and feet are often numb. No feeling at all. i move them and try and wake them. It takes time to get the feeling back in my extremities. Muscle twitches ripple inside my thighs and back. My right leg often shakes uncontrollably.
I have to set my clothes for the next day on a hanger and bring them downstairs, no matter how late it is when I get to bed, or else I won’t be able to get dressed the next day. I’ve forgotten how to get dressed in my bedroom the way I used to. I know that must sound odd, but it’s not part of my routine anymore and so I’ve forgotten how to do that. It would be new to me. I’d have to learn or relearn how to do that.
So the night before I have to set the clothes on the hanger. The pants go into the hooks, the socks between the bar and top of the hanger, my underwear hangs around the handle, and the hanger is hung on the bathroom hook inside the door. This is where I get dressed every day. Each article of clothing is assembled in the order I have to put each item on my body. When I’m finally through my morning routine (make the tea, write the list for the day. check the date on my iPhone calendar, I sit and do the New York Times crossword and mini crossword puzzles on my iPhone and redo the ones from each day from the previous 7 days to see if I can remember the answer to each clue. Then I take my thyroid meds with my tea. I eat a banana and then do fifteen sit ups on the anti-gravity table. I drink a cup of coffee and do a round of Lumosity cognitive games, trying to attain at least a somewhat comparable score to the day before. I then wash the coffee cup and dry it and put it away in the cabinet and then venture into the bathroom and talk myself through the process of getting dressed, groomed and ready. I recite out loud, “First the right leg goes through…, then the left leg…, then pull them up. Take the shirt and pull the opening over your head. Then the left arm goes through the sleeve, then the right arm goes in the other sleeve. pull the shirt down… Then sit down and put the socks on. First the right sock and then the left sock. Then put the shoes on.” It’s exhausting to have to remind myself to think of each step, maddening to have lost so much of my executive function. Frustrating that I have to do the same thing in the same order to get dressed. I do this every day. Everything I do is in steps, and it’s slow going. I am sick of it. Have been sick of this procedure, this groundhog day, this adaptation, this insanity, for a long time. I have a typed sheet which details these steps taped above the sink in case I get stuck and can’t remember what goes next. This is how I am able to function, the way I am able to get dressed “independently”. No, I never had OCD when I was well. I would just do things spontaneously. I would get up, take a shower, get dressed, have breakfast and head out the door. I would not have to THINK about it.
This is a photo I took on one of my walks with Theresa after Halloween.
I keep the printed programs from Moments at Lincoln Center, so I will remember what I saw and listened to. This is a photo of an ensemble of violin and viola players who are teaching artists through the New York Philharmonic. I attended the program titled Kaleidoscope, with Jeanne on Monday, November 18. The string quartet played movements by a contemporary composer, Gabriela Lena Frank and movements composed by Antonin Dvorak, the Czech composer who employed rhythms of the folk music of Moravia and his native Bohemia absorbed into a symphonic tradition.
I often see people I have met at these programs, people with their care partners. I usually go over and say hello. Sitting in front of us were Paul and Maureen (who was diagnosed with Alzheimer’s). She recognizes me but has little to say except hello. At the end of the program I go over and say hello to Fred and his wife, who I met a year and a half ago at The Alzheimer’s Association in Manhattan. She was helping him put on his coat and scarf. I ask her can’t he do this by himself. She says it’s just easier to help him. I think of the way I force myself to put my own clothes on, how I struggle to get my own coat on and zip it, and how my way of doing things is not easier, but I find it necessary in maintaining a semblance of independence. I go over and say hello to Milton, who I met previously. He was diagnosed with Lewy bodies. He told me he frequently travels alone from Brooklyn to meet his brother in Manhattan. This time he was with his daughter, and I introduced myself. I sensed her unease when I uttered the words early onset Alzheimers.
Milton and his daughter in the after program
After each concert or program people with dementia and their care partners of companions are invited to go to classrooms for discussion, music and art making. In the spirit of multiculturalism, we were shown a map of the world and given a pushpin to stick into the location on the map where we were born, or a place that our ancestors came from. I looked at New York and saw that there were already a dozen or more push pins in and around it. No room for mine. So I looked for Poland, where my late father was born and raised, and where I lived as an American Fulbright. I looked for Warsaw and Lodz, and pushed the pin into Lodz.
After the program, I called my dementia buddy Tim on my phone, from the lobby. We’ve been having zoom chats on Monday’s at 3 and since I wasn’t at my computer I couldn’t chat with him. I observed a woman pacing around near the elevator, and when I got off the phone with Tim, I approached her and heard her speaking to herself. Her speech was not reality based at all. I noticed that she was wearing a light fleece jacket and thin pants, not at all like the long down coat her aide, a glamorous died blonde with painted on eyebrows and a Russian accent, had on. As we rode down the elevator with them, I mentioned to the aide that this woman did not look like she was dressed right for the weather (it was a rainy and cold day in New York). The aide looked at me and said, “Oh she always shakes”. Once we were on the street, Jeanne called for an Uber to pick us up. I watched as this woman shuffled along shivering next to her aide, who had by now pulled the fur lined hood of her luxe ultra down coat, up on her head. I was helpless to do anything to help this woman, but I felt sorry for her. She was not being cared for properly by the aide. She was shivering. That night I wrote about this woman and her aide on the AlzConnected, online forum. To my surprise and consternation, someone I had met on an online dementia Zoom chat, a woman who initially said she had been diagnosed with mild cognitive impairment, but then claimed she was diagnosed with Alzheimer’s, wrote in answer to my post, that if she had seen this shivering, babbling woman underdressed, and noticed the aide was not taking proper care of her, she would have followed them and called the police. I thought about this, thought about how slowly I move. I pictured myself following them and calling the police and getting arrested for harassment. I imagined the New York police responding to such a call (as if they would), and my trying to explain that this was elder abuse. In the best of all worlds this action would have been a wake up call for the aide, who is being paid to take proper care of a person with dementia, to do her job. But this is the real world and it’s New York City where homeless people are wearing plastic bags over tattered coats to keep warm and dry. That this woman with dementia had an aide who was accompanying her meant she was cared for. Obviously not well cared for, but I’m not equipped to change that besides pointing out to the aide that this poor woman was shivering and should be dressed in a winter coat and warm pants. I was upset that the woman I met on the zoom chat who responded to my post, didn’t get it- could not perceive my own helplessness because I too am impaired. I felt so misunderstood because I tried to have an effect. I did speak to the aide, and told her i thought the woman wasn’t dressed for the weather. I planted the seed. it’s all I could do and the woman responding to my post criticized me. Instead of defending myself, I deleted the entire post, her words and mine.
I can’t save anyone. I can only observe and I can speak, but I can’t force someone to take better care of their charge. I can barely take care of myself.
So in the spirit of “there before the grace of G-d”, I’ll give thanks for what I do still have. A roof over my head, warm clothes for the winter, my sweet, cute and sad husband who takes care of me now and has become a great chef out of necessity.
My daughter bought me these warm socks with hearts on them. So thoughtful. I love her so much.
A message for Greg; you said I lift you up. That’s funny because I’ve actually become the Debbie Downer of Dementia! https://www.youtube.com/watch?v=wZ1AjaNjack
You have rose colored Alzheimer’s glasses my friend. Maybe it’s the Prozac? Nah! It’s your soul, dude. You have faith. I look to you to pull me up when you fall.
Why in the world would I take a photograph of an empty park bench?