I am a broken, sputtering machine, still trying to work. I know that words have meaning, and so I gave this post the title, The Broken Beast Dirge. A dirge is a slow mournful piece of music. Imagine the sound of a solo bagpipe playing a hauntingly beautiful tune for the fallen hero or heroine.
I was happy, capable, quick witted and always interested in tomorrow. How do I know? I see ads for rugs, runners, on my phone, things I thought about buying to decorate our home. Colorful things. I loved color. I liked to shop, I liked new clothes, furniture, decorating. Reds, purples, yellow and blue. I was eccentric, but I had desire and ability. I think it’s over six years since my mind started to unravel. Five years since the confirmed diagnosis. Alzheimer’s disease. Over five years since the Spect scan. That was at the end of September 2016. The FDG Pet scan was in February 2017. I count on my fingers. I remember the neurologist, Thomas Wiesnewski saying I would likely be okay for five years. That my cognition wouldn’t change that much until then. Then is now. I think he was guessing. He didn’t say I might have trouble walking, that my balance would be affected. He never said I might start to babble incoherently. That began in 2018. I remember hearing myself mix up words. I know that I have lost so much. I’ve read this illness is the worst for those who maintain awareness of what is happening to them. There are some who aren’t aware, who are blissfully unaware of the changes. Like Iris Murdoch, the great English writer whose husband wrote about her descent into Alzheimer’s. She happily sat and watched Teletubbies on TV.
To get started on this page today, my husband had to help me. I had forgotten that I had to login in order to see the word WRITE. I see that I haven’t posted a new page since December 2021. I thought I had written something in January, after the New Year. My childhood friend, Maxine, texted me, and wrote that I hadn’t written in my blog in months, and thought she would check in with me. The drawing has been sitting on my table for a months. It is my first and only drawing in 2021. I can still write. I can still draw and yet I haven’t. So here I am. Like a news reporter from the frontier of this land of forgetting.
This is a drawing of our grandson Ian. He was born on August 28, 2021. The drawing was made in December and completed in January. We now have four grandchildren, Ellie who is almost five and a half. The adoring big sister who leads the way. Michael and Sara are the twins, and they are two and a half. Our son Soren sends us photos every few days. The kids are growing, changing. Ian has started to eat solid food. In a short video Sara says the words ” I can’t”. She looks at her parents who are laughing, and repeats herself smiling, “I can’t”. Michael jumps from the coffee table onto some pillows below, and gleefully says, “down”. Ellie is learning to ski. We haven’t seen them since the end of November on Thanksgiving Day.
I used to say when a person has this disease, they can’t fight the progression. Now I know how true that is. The losses are profound. I asked my friend Jackie, who is the chair of Dementia Action Alliance, if she thinks I have progressed more than the other people she knows who have a dementia diagnosis and participate in the support groups on zoom. I asked her to please be honest with me. She said yes, I have progressed the most. I wish she had fibbed. She used to say that I am so talented, such a good writer, an artist too. Now I go on the support groups and look at the others and often don’t know what to say. I hold up my phone and show photos of my grandkids. Alzheimer’s show and tell.
Most of you know my husband was diagnosed with lung cancer last summer. After the diagnosis he was in great pain as the cancer had progressed to bone in his upper spine. He had radiation (a horrible ordeal) and the pain stopped. He is now on a second immunotherapy drug called Afatinib. He had been on Tagrisso for months but the last CT scan showed two new spots so the oncologist agreed to try Afatinib. His worst symptom now has been fatigue. He has a burst of energy in the morning, goes for walks, has been food shopping, and takes care of our home, the finances and well… just about everything. He takes care of me which is a big job. Makes me breakfast. Makes dinner, although our daughter has been ordering organic frozen food which is delivered by Amazon, so dinner is often just a matter of using the microwave. Once a week my friend Jeanne brings a meal, or my husband walks over to her house to pick it up. My niece Caarin brings a meal when she gets here every few weeks. My friend Janet also delivers meals every week or so. Sometimes our daughter orders food from local restaurants or cooks when she’s here almost every weekend.
I’m afraid to be alone. When my husband recently went to a doctor’s appointment to get an injection of a drug to help keep his bones strong, I knew I would have to get the day started alone. I would have to get out of bed, put my slipper socks on, and put my robe on, and walk down the stairs myself and make the tea myself. The crazy thing I do once I get downstairs is pace around the wall between the hall and the living room, fourteen times. I started doing this because I was afraid I would lose the ability to walk. Now I see I do it because once I get downstairs I don’t know what to do with myself. Quells my anxiety. Then I take off my robe and hang it on the hook in the bathroom, and walk over to the notebook in which I write the list for the day. I start with writing the date. Basically I copy over the list from the previous day and add what will happen that day, the zoom chats or Facetime calls from Jeanne or Razel, depending on the day, the social engagement clubs through Dementia Action Alliance and support groups on zoom. Once a week I have a zoom chat with Helen, a bio-engineering student from Columbia University, who participates in a program called “Conversations with Rachel”. We talk about art since I was an art teacher and art historian. We’ve become friends and I marvel how worldly and intelligent she is. She’s originally from (Soviet) Georgia, and she’s told me about her mother, her two brothers, and she’s shown me images of the city where she lived. Her mom and youngest brother still live there, and her older brother lives in California with his wife and baby. Twice a month I join a zoom group hosted by Jill Goldman and Amy Trommer, two social workers who began the group to help people with dementia engage socially. Once a week I have a facetime call with my friend Larry who lives in New Mexico. So I’m covered with lots of social engagement. Gives me the motivation to keep going, to connect. To still be a part of this ol’ world.
I started writing the current page weeks ago. I want to still have a voice. To still express myself, my viewpoint and to let people who read this know that I am still here. My thoughts are fragmented and living each day is a challenge. It’s said that dementia affects each person differently. In my case the greatest impact has been on movement, my motor skills. Not necessarily my fine motor skills, but my gross motor skills, whole body movement. My balance and walking are completely different from the time when I was well. My balance is often compromised and when I turn I forget how to pivot and catch myself before I tip over. I practice walking around my house. I can still climb the spiral stairs and go downstairs holding the banister. Sometimes I feel like this disease is more like ALS. Or Parkinson’s disease. I fall asleep on the couch and when I wake, I lay there telling myself to move, to sit up, and go to the kitchen to get my tea, and to the bathroom to get my robe, and go upstairs and get into bed (after I set up the hanger with the clothes I will wear the next day). It sometimes take over an hour to just sit up and stand and go. Once I am up I know what to do. I can manage okay by myself, once I’m moving.
Emotions. About dying in slow motion. Watching myself lose abilities. Trying to fight a disease that is unbeatable. These are thoughts I have every day. I dare not say this while on a group zoom chat. Pretend that it’s easy to live. Pretend. Be thankful that I am safe and warm.
In actuality it is sleep that is the only thing that gives me relief. I dream, and when I dream I do not have this disease. I walk normally, I speak normally. I go outside by myself.
A few nights ago I dreamt I was writing in this blog. But when I went to post it all the words moved to the left side of the page, and lined themselves up vertically, one word on top of the other, in a long stream of words going from top to the bottom of the page. Last night I dreamt I was with the actor Jeff Bridges, in a small hick town. We were walking through a big outdoor garage, full of trucks and vans. We walked together and I told him the best way to feel normal was to chew grape Bubbiliscious gum. I felt happy.