The title of the exhibit of photographs is Connection. This is my photograph of Bob on the cover of the booklet.
Ironic because increasingly my experience of Alzheimer’s is disconnection. I am haunted by the disconnect of my former life to the life I am living now.
Last week was busy. This week is not. I like to write about going places and doing things. When I’m home I don’t know what to do with myself, and end up playing Luminosity games for hours. Or I read the Alzconnected.org forum and get so sad when I read the spouse forum and see how the their loved ones have progressed and have been placed in memory care or nursing homes. I intended to read some fiction, more short stories. I haven’t. The books sit pregnant with promise on the bookshelves. Since I have to be accompanied to go to New York City now, and it has to be for a specific program, a lot of my days are boring. Boredom is bad for dementia.
There’s a lag in telling my story. This blog is supposed to be my shared diary, but I get behind the ball, and then I have to look at the calendar on my iPhone for the memory of the days I did interesting things.
On Monday, July 16, we attended the exhibit of photographs sponsored by the Josephine Herrick Project and the Alzheimer’s Association. I took this photograph of Bob during our photo class, when we were assigned to photograph things outside of the windows. It was selected for the cover of the booklet published for the show. My husband drove to Manhattan, and my dear friend Ruth joined us. This was the second time Ruth had been to Manhattan since she moved from Atlanta eight months ago. For her it’s a thrill to see Times Square, drive on 42nd Street. For me it was a thrill that she joined us.
New York is filled with tourists in the summer. For me it was another trip as the Alzheimer’s tourist.
I had owned an art gallery in Manhattan in the 1990’s, in Manhattan’s SoHo district. My drawings and sculpture have been shown in Manhattan galleries. My work appeared in a few The New York Times articles. But I never “made it’. My work was included in some museum collections, I made films, and presented to audiences internationally. A cursory search on Google shows me that I am still here, with a history and checkable reference. The information is a composite of a trajectory and a life that had direction, ambition, and then it didn’t. Everything that I was is in the past. Then everything stopped when I progressed in Alzheimer’s. My identity changed. I had to stop working. I could no longer hustle to make another film. All I could do was draw and write this blog, and participate in online Zoom chats.
My daughter was the one who found the program at The Alzheimer’s Association in New York. She is too busy to take me, but without her pro-active research I would not have found it.
Now I’m included in this exhibit of people who have cognitive impairment and Alzheimer’s. Members of the support group and creative engagement program.
I know I go back and forth between the past and present. I think it’s my way of trying to connect the past to what has happened to me. It’s a see-saw. I’ll never know why this happened to me at an age when others I know are still vital.
I hosted art openings in my gallery. I never would have imagined I would ever go to one in which only my first name was used to identify who made the work in an exhibit of photos sponsored by the Alzheimer’s Association. Unless one is already known by one name, like Madonna, having one’s work labeled with only ones first name is odd. It reminded me of kindergarten. A demotion of identity. Isn’t this a result of the stigma that this disease retains? While I am delighted to have been a part of this program, and grateful to have my work in the show and my photo on the cover of the catalogue, I am aware that anonymity is stigmatizing. It’s not Alzheimer’s Anonymous.
At the opening I met Geri Taylor who is an Alzheimer’s early stage advocate. I was surprised that after 6 years (she first started noticing signs of Alzheimer’s in 2012 at age 69 and is now 75) she does not appear to have progressed. In fact she looks younger and better than she did in photographs from The New York Times article titled “Fraying at the Edges” .
She was svelte and beautifully dressed, and to me did not have any difficulty walking and talking as I do now. If she has this disease it is progressing extremely slowly. Her original diagnosis was MCI (mild cognitive impairment). That was my original diagnosis as well, but in less than two years I have progressed and can’t prepare meals, get dressed without putting my clothes on a hanger the night before, have at times forgotten how to eat with utensils… I know that Alzheimer’s is a disease of progression, and although she’s been diagnosed, it’s in no way evident that she has it. The media wants to believe that a person can have Alzheimer’s and not progress. Wouldn’t it be lovely if that were the reality? I’ve written about Amy Norton who got this disease at age 43, and progressed rapidly until it killed her at age 48. The late great women’s basketball coach Pat Summit got it at age 59 and was gone at 64. Ken Sullivan, a formerly brilliant finance guy in Massachusetts was diagnosed at age 47 and held his own for 3 years before his wife placed him in a facility. He was 52 when the disease took his life a month ago. Greg O’Brien, wrote this beautiful piece about him for his blog in Psychology Today.
What I know is that when it’s younger onset the disease progresses. In some faster than others. 5 years seems to be the cut off point for so many.
AND it’s not a matter of attitude. If that were the case Ken Sullivan would still be here as he had a great attitude.
The following are some photos I took at the opening. I got to meet the program director of The Josephine Herrick Project, Erica Read, and had a pretty good time.
This is my favorite portrait, which didn’t make it into the exhibit but was included in the booklet. It’s of a man who calls himself Josephus Pratticus and someone who has become a good friend.
Tuesday July 17. Rabbi Rob texted me in the morning. Can he visit? What time? I said 5 o’clock after checking my iPhone calendar. Best to see him after yoga with Krishna. I wasn’t feeling very strong. The postures were hard to do. He keeps telling me that as long as I work on my balance pose, walking will be easier. The rabbi arrives and we discuss the sadness, the knowing, the fear of death. He tells me about a woman in the congregation who was in her forties and had terminal cancer, and told him she was afraid to die. He told me about his mother who died suddenly at age 61 from an aneurism. People die. Everyone does. It’s the slow strange death of Alzheimer’s, what is called death in slow motion, that is so hard for me. I would rather a gigantic grand piano fall from the sky, would rather a plane suddenly fell on me, would rather a hit man come through my door. I do not want to progress through the stages of this disease. I’ve seen late stage in Michael the former lawyer who is now doubly incontinent, in a wheelchair and a mute paraplegic who was wealthy enough that he now has a 24/7 hour care and is fed, bathed and dressed. I have a DNR. Don’t feed me if I can’t feed myself. I know that I have progressed in two years. I’m not able to walk as I did before, my balance is off and I fall. I experience sound as alarming, have difficulty dressing and showering. I’ve had outbursts. So much anxiety. I can’t sleep more than a few hours at a time. Such a very very very strange disease. Some people who are diagnosed do not experience these things. I question, do they really have it? Apparently I have had it for a long time, well before there was any cognitive impairment. That’s what the scientists say – Alzheimer’s begins long before symptoms of memory loss appear.
Wednesday, July 18, my friend Jeanne took me to The Metropolitan Museum of Art Met Escapes access program. This is a program for visitors with dementia and their care partners with discussions about art and art making in the museum galleries.
It was the spookiest experience of the week. A haunting experience. I taught art and art history for twenty years. The entrance for the program was the same entrance I’d used dozens of time when I led tours for my students through the galleries. Here I was no longer a teacher about to lead an art tour, but instead walked into an art access program for people with dementia led by docents who know about as much as I still retain about the art. Here I was in the room I used to bring students to conduct tours of art and now I was there as a person with Alzheimer’s. Everything around me is the same, but I am different. It felt like I was the ghost of my former self. I will never again be the confident woman I was. Instead I have become a fearful person who gets lost and disoriented, forgets what I am trying to say, desperately clings to my husband and the few friends I have who are kind enough to spend time with me and plan trips like this one. Jeanne is such a person. A friend.
We were led into the Met Escapes gathering room and Jeanne and I were introduced to Barbara who led our small group tour. Lin, who I met at the program at the Rubin Museum was there. We were given adhesive name labels and off we went to the elevator and up to the galleries to see the first of four art works, the time allotted to see and discuss art during the hour and a half program. I remembered how I would stay at this museum for at least four hours, and look and think deeply about the art. I was so curious and free then and independent.
First stop Rosa Bonheur, The Horse Fair, 1852 (later touches in 1855).
I had talked about this painting to my students when I taught art history. I told them that Bonheur was a maverick, a very unusual persona for a woman in the 1850’s. She was the most well known woman painter of her time. She had been very wealthy, lived in a castle and was a outspoken lesbian, who wore mens clothing. Women were often only reluctantly educated as artists in Bonheur’s day, and by becoming such a successful artist she helped to open doors to women artists that followed her. The huge painting depicts muscular horses, their tails tied in buns, being sold by horse dealers on a street in Paris. We looked at the painting, discussed the way the animals were painted, the energetic composition with depth demonstrated by the procession of horses being led to the middle foreground from the left and receding into the distance on the right. We talked about color, the way red is used to punctuate, that Bonheur has painted herself atop a horse at the center wearing a cap and is the only one looking at the viewer.
I looked around the gallery. There were other works I wanted to see. The next room was filled with Impressionists; Monet, Manet, Cezanne…, but there was no time to look at other works of art and I am no longer the independent woman I was. How disappointed I felt to only get to look at The Horse Fair by Rosa Bonheur, and not have time to stop in front of a Manet or a Cezanne, whose complexities and ideas about painting are far more interesting to me.
We were taken to see a Van Gogh (1853-1890). Cypresses painted in 1889, shortly after Van Gogh began his yearlong stay at the asylum in Saint-Rémy. The subject, which he found “beautiful as regards lines and proportions, like an Egyptian obelisk,” both captivated and challenged the artist. Barbara asked questions about what is the time of day in the painting, the thick swirls of paint. She told us that before oil paint in tubes were introduced in the mid 19th century, painters would grind their own pigments.
I looked around the gallery, saw the Gauguin’s, knowing how it was his relationship with Gauguin that spurred him to cut off his ear that fateful night. I wanted to walk across the gallery and look closer at La Orana Maria, and the paintings he made in Tahiti after he left Van Gogh in Arles. I wanted to see more.
We were accompanied to our next stop, a large combine wall piece, The Field, by an African American artist, Thornton Dial (1928-2016) . It’s a constructed piece that contained planks of wood, nails, wire and layers of animal hide. I’ve since read about Dial and Bill Arnett, who has supported Dial and his commitment to creating a body of work that speaks of the trials of slavery and the Southern African American artist. I disliked the piece initially. I dismissed it as the work of a naive untrained artist. Since then I’ve researched his work and life, and I’ve realized that to understand an artists work you need to understand the context. I was not accepting the context and what inspired him to develop his densely layered works. Pollock’s drip paintings require a context to appreciate them. So does Warhol. Certainly this benefit should be given to a Southern African American artist whose work is reminiscent of Rauchenberg’s combine paintings. The vocabulary of art is understood by it’s context. Through art the narrow minded person I have been becoming is developing a small crack and some light is getting in. You can decide to like or dislike something if you understand it, but not liking it because of a superficial assessment is narrow minded. So I learned something about myself from seeing this work. I learned to be open to still learning.
Next stop was a large Abstract Expressionist painting by Joan Mitchell. Sunflower, 1969.
Joan Mitchell (1926-1992) is known for the compositional rhythms, bold coloration and gestural brushstrokes of her large paintings. Inspired by landscape, nature and poetry, her intent was not to create a recognizable image but to convey emotions. Her early success in the 1950’s was striking at a time when few women artists were recognized. As an important member of the New York School, she achieved the type of success that eluded many of her female peers. I believe it’s because her work is genuine, original. She saw much of the world – letters, sounds, people, emotions – as color and memory.
It’s enlivening for me to be able to read more about an artists work and life. Why they worked the way they did, and in Mitchell’s case this one painting, which I didn’t really appreciate fully when I saw it at the museum, led me to read more about her toughness, and how she was able to convey her inner life into her art in a body of work she developed over forty years.
We were given some paper, colored pencils, yellow post it pads, colored tape, and colored tissue, to create something that was reminiscent of the painting – a sunflower. We were told we could tear and tape, crumple and draw, and were given about five minutes to make a little work of art. To me this felt silly and clumsy in light of looking and discussing the art.
Jeanne and I left the museum and proceeded down Fifth Avenue and caught the M-1 bus to 42nd Street. I was concerned about riding a NYC bus, thought it might be too crowded and we wouldn’t get seats. It was fine. We got off in front of The New York Public Library, and Jeanne took me to lunch at Le Pain Quotidian on 40th Street.
Thursday, July 19. From the sacred to the profane. An appointment with the neurologist at NYU Pearl Barlow. He prescribed yet another medication, Memantine, which is used to treat moderate to severe Alzheimer’s disease. I haven’t started it yet. Clearly the Rivastigmine has not been doing much good. When I tried to double the dose as he suggested (then he wanted me to triple it), I could not stand or walk. It appears to me that I have neuroleptic reactions to drugs. Do I dare try this? The jury is out for the time being. I am scared to introduce another drug into my system, knowing that there are no drugs that stop the progression. The neuroolgist asked if I was seeing a psychiatrist. He obviously hasn’t looked at my chart. He didn’t know or remember that after I’d seen the psychiatrist he recommended (the one who developed the stages of Alzheimer’s) that the doctor did not acknowledge the result of the scans that showed the pattern of Alzheimer’s. That psychiatrist diagnosed me with “loosening of association and flight of ideas” and wanted to prescribe first Risperidone an antipsychotic that puts Alzheimer’s patients at risk for a stroke, then Lamictal which is given in Bipolar disorder, then Depakote both of which cause loss of neurons.. I did not take these meds. When my decline started it came on as major anxiety and major depression. Whe this started and I thought it was a relapse of major clinical depression, back in Niv 2015, I took the meds offered by a different psychiatrist, Welbutrin, SAMe, Klonopin, and Ativan. Within weeks I woke up with what I described as fragmented non linear thoughts, dreaming fragments of dreams I could not remember while I was awake. When I tried to stop taking those meds, I could no longer fall asleep. I know the medications affected my brain. The first neurologist said they unmasked the disease. Why would I want the risk of taking anticholinergic drugs again? Anticonvulsants? Aren’t things bad enough? Will it help for me to be a perpetually sedated state? Would I even be able to dress myself then? Would I be able to walk and talk? I no longer trust the psychiatrists. I believe along with exposure to pesticides and toxins, that the psychiatric medications caused this disease to be “unmasked”. In other words I don’t think I would have gotten it if I had not been put on these medications in the first place. They caused brain damage. Yes I have loosening of associations and flight of ideas, but it’s because my brain has been damaged. I’ve been traumatized. It’s not something that medications are going to fix. Exposure to Klonopin over the course of late 2015 and 2016 caused iatrogenic disease. I lost the ability to sleep. That led to brain damage because of the inability of my brain to clear amyloid. Cognitive impairment followed and the progression of Alzheimer’s began. There is no cure or help for this disease. I left his office more anxious than when I came.
Friday, July 20 – This was the third Friday of the month, the day I have been going to The Rubin Museum’s Mindfulness Connections program for people with dementia. I’d gone myself for the last two months. This time Luiza, my newly hired companion came with me. I have grown weaker, and the walk to the PATH train took a half hour rather than fifteen minutes as it had in the past. It’s an easy commute but I am exhausted. All the time. I haven’t had over 4 hours of sleep a night in over 4 years. My walking feels now not only wobbly, but I feel like a gravity is pulling me down. I wanted Luiza there as a precaution if I fell (I actually fell down part of my spiral staircase the other day). We got to the museum and joined the usual suspects and and their caregivers. Maureen the 65 year old woman who doesn’t know where she lives or what her profession was, but is pleasant and this day was smiling, her fingernails and toes painted red; Michael in late stage dementia his wheelchair along with his devoted and warmhearted aide Georgia; Scott the former plastic surgeon who is 64 and was diagnosed 5 years ago and is definitely holding his own in a slow progression, the old gents who are 90, who always say that everything in the museum is beautiful. A woman with her mother who looked to be in her eighties and showed no evidence of cognitive decline, a man who asked “how do you become a Buddhist”?
When it was time to go upstairs to view objects and discuss them, I turned and saw that Luiza was gone. The sweater I had given her to hold for me was on the table. I panicked. She would not know how to meet us. Then she reappeared. She’s gone to the rest room. I asked her why she didn’t tell me. She said she had. Did I not hear her? How horrible to get panicked for such a stupid reason. Why does this happen? I’m so reactive.It’s exhausting. I hate this disease.
We went upstairs and viewed several objects and Jeremy talked about their meaning. Paintings from the tradition of Eastern Tibetan art, a replica of the Copper Colored Mountain Temple where the (possibly mythical) Padmansambala resides.
Luiza and I left the museum after the tour and headed to the PATH. It was rush hour and I told her that in order to get a seat, we would have to walk down the long platform to be near the front of the train. The train came and I rushed to secure us two seats. Once we’d arrived in Hoboken, more exhaution. We stopped at the park on the way back. She didn’t say a word about the museum or anything we saw. I wanted to elicit some interest in something. we could both relate to. I mentioned the Armenian artist, the late Arshile Gorki. I showed her photos of his work, the famous painting of him as a child with his mother. We sat in the breeze on a bench, and then returned to my home and she left. I called Ruth, my dear friend and told her that I had made it home.
This disease is exhausting for me emotionally, physically and cognitively. Every decision every transition, so much anxiety and I am tired of it, and see that fighting it is my daily job. It takes the pleasure out of living. Everything is about pushing myself through each day. I can understand why the end comes quickly in fast progressors. There comes a tipping point where I feel I am no longer able to fight it. And yet I carry on.
7 thoughts on “Haunted”
Haunted is another wonderful blog….once again I’ve forgotten your name, so please forgive me………I too hate quiet weeks….it’s a good job we can still type to keep some semblance of sanity….Wendyxx
My name is Minna. We have been communicating through your blog which I often send replies to. I read your posts which are much more frequent than mine. You are doing well. Lucky that you can travel alone and stay in hotels and don’t get disoriented. Thank you for writing to me and for reading my blog.
Wendy, My name is Minna. Thanks for reading my blog. It takes me a long time now to write. I have to do a good deal of editing. You’re writing is inspirational. How do you apply the photographs to your posts? I email myself the photos I take on my iPhone and upload these images from the desktop. Curious about your process.
I just saw your reply to my comment awhile back. I have been distracted by company ( my daughter and family 🙂 My routine gone and oh how I struggled, but made it through with a nice visit.
I have tried to email you and says it is sent but never see a reply from you. So never saw your email to me and I guess you have not seen mine. I don’t know how to fix this. Losing how to figure things I always knew. You know what I mean. I will keep trying and will see if someone can help me with this.
I do want to speak with you. I have pretty bad aphasia and communicate so much better in writing, but think I would try to speak with you anyway. As someone said. You get it. I see this too in your writing. My disabilities have left me pretty isolated and with few friends. It is hard, but life is still good. I love how you connect with the pain, but still hold on to your love of life. I believe that is so important for us who are progressing. Denial is no good, but neither is wallowing in sadness. You have the right combination of attitude to progress with least amount of suffering. Ah, that word. Supposed to be bad, but I don’t care. It is still suffering no matter what you call it. If it’s good enough for Jesus to use, well then it is a fine word in my book 🙂
(Sorry for that, it is an old issue from alz board). You may know about it. Don’t know, anyway…
I cried when I read your latest writing, “Haunted”. I so very much understand your every word. You are so good at expressing what happens with our mind and how and why we react the way we do. As said before, you help me feel less alone. You always bring up so much emotion when I read what you write. You have a gift Minna. Your sharing I am convinced will help many, as has helped me. Thank you so much.
Your friend always,
I have tried writing to your email many times, and it keeps bouncing. In the past month I have had a huge amount of physical progression. Getting very weak now and walking and talking is much harder. This is progression.
We can try and talk on the phone. Best to set an appointment and confirm the time Eastern Standard Time. The evening is best. My telephone number is (201) 993-8264.
What is your telephone number?
Sent from my iPhone
Thanks for contacting me Minna. My name is Mike Hughbanks, you emailed me introducing yourself after you read my blog Omalz.com. I just read your blog “Haunted” and it broke my heart. I am very fortunate in that I am an Alzheimer’s slow progressor. I was diagnosed 3 years ago. Sleep is also an issue for me, however, it sounds like you suffer much more than I do. I look forward to conversing with you more but I wanted to post a quick comment to tell you that I read your blog. It is very well written. I love the pictures. Most importantly, thank you being open about what you are going through. I know it is hard. I speak publicly in the midwest about my journey with Alzheimer’s hoping that maybe I can make a difference is someone’s else’s life. You are making a difference in people’s lives that you will never know. I have a white board above my desk. I keep thoughts written down that I change occasionally. The current one is “While I may forget the kind words I say today. The recipient may remember them for a lifetime.” You are making a difference by posting your experiences, the good and the bad. Mike Hughbanks
Hello Mike, I really appreciate your compassion. As someone who has known women who are faster progressors, you know that this disease can be very very rough. Caregivers have written to me saying that my blog gives them insight into what their loved ones who can’t express themselves, may be going through. While I have a voice to tell my story, I will share it. An old friend of mine once said, we are all in the living room together, but at some point we have to say goodnight. I am not ready to say goodnight. Thank you for your encouragement. Minna