I am making this phrase, The Cardinal Truth, my own. I do not mean the cardinal truth as a symbol of the four virtues – which were recognized in classical antiquity and traditional Christian antiquity – temperance, courage, prudence and justice. I mean to refer to the idea that we must walk in spirit in all things, and listen with our spirit to all things.
My husband spotted a cardinal, and called out to me to come and see him. I thought about the robin that kept visiting my backyard this past summer and in the early fall, that I believed was a visitation from my father. A sign that there is more to our world and existence than we know. Then my husband saw the cardinal, and I saw him again sitting in a tree the next day. I felt the presence of my father. My father who died in August 2006. My father who I have been angry with because I felt he abandoned me in favor of my sister. He had Parkinson’s disease and had become mean to me. Nothing I said to him would soften him. I think he may have had dementia from the Parkinson’s and all the medication he was taking. I am learning to forgive him.
Seeing the cardinal felt like he had not abandoned me. The message I was receiving was that he will be there on the other side. The message was that he still loves me and understands that this is the hardest and and most treacherous disease, and that he sees how brave I have been. I am brave! I’m 64 years old, almost 65. No one should ever get this disease, but getting it at a younger age is particularly ruthless. It’s not like I have had the chance to complete the things I wanted to do. My daughter was in her early twenties when this started. The disease has progressed quickly. It’s unfair. (Life is not fair or equitable when it comes to Alzheimer’s either. Neil Simon, the famous playwright, died with Alzheimer’s at age 91, but he had led an incredibly productive, creative and successful long life. I was still in the middle or end of the middle, or so I thought).
I am having many physical symptoms now, and they are not related to cognition. If this disease was about how well one scores on the MOCA or State Mini Mental Exam, I would not be deemed to have it. I score 29 out of 30. I can still do many math equations and can count backwards from 100 by 7. But getting out bed and getting through each day requires support and reminders and pushing myself through each task. I literally have to find the courage to make mistakes doing the simplest things now. Like chew my food and swallow. Wash dishes. Put on my coat and zip it, making sure I have my eyeglasses on, my purse and phone and keys, and go outside and walk to my friend Ruth’s apartment. It is insane how hard things have become. So the cardinal visiting reminded me how brave I am, and I want to believe there is a spiritual dimension to all this suffering. I want to believe that my father is there and visits me.
That’s likely dementia, but how can I know for sure? Maybe there are things that science can’t explain. Why I felt his presence and connection.
A trip to the library
Unbelievable really how a simple walk outside is such a big deal now. The library is a half mile away. It’s across the street from Church Square Park and a local site I would often go to with my kids and my students, and by myself. It’s a block from the school where I was the chair of the art and art history department. Today my husband suggested we go there. We passed the Episcopal church where Christmas trees are being sold in front, as they do every year. It made me realize that last year at this time my husband took me there on one of our walks. I understood by how I feel now, how my walking is affected, and how my speech is altered, that there has been significant progression in a year. It made me understand how debilitating this disease is and how much fortitude it takes to keep going. Last year we went inside and I marveled at the stained glass windows I had never seen from inside. I remembered how I felt then. There were no physical changes then that I was aware of, except for the difficulty getting out of bed and getting dressed. I was not aware that walking was difficult then. I certainly had not begun to have changes in the way I spoke. Certainly didn’t speak nonsensically or jumble up my sentences or talk to myself, instructing myself the order of steps in getting dressed and groomed. I didn’t have trouble chewing and swallowing then. We passed the sign TREES and I snapped a photo.
The library is on 5th Street. Make a left and cross Willow Ave, go past the building where my friend Zehava lives, and it’s there.
My husband suggested we go upstairs. First the steps up to the door were a challenge. Once inside he suggested we go up to the second floor. Climbing those stairs required holding the bannister and pulling myself up.
First thing we saw on the second floor was a student art exhibit from a local charter school. Looked sort of like the kind of installation I would prepare when I set up local exhibits of student work. Sadly it reminds me of what I can no longer do. I had to retire in June 2017, after pushing myself to keep going that term. I didn’t want to, but I could no longer do the work with the students, for so many reasons. I caught a glimpse of an artwork by the brother of a student I worked with privately around the time my mind started to scatter. Not a big surprise that Leo is talented and imaginative, as his sister Grace was. His detailed and funny illustration of freaks and geeks in some kind of extraterrestrial room, goes beyond the rudimentary examples around him made by other students. I recognized his last name and the grade he is in and realized it has been 3 and 1/2 years since I recognized the symptoms of this disease. Grace was studying privately with me in July 2015, and my mind was starting to jumble then. I remember.
Then we into a large room with historical memorabilia. I saw an image by the American painter, Thomas Hart Benton, whose work I would show my students, and The Oxbow, by Thomas Cole, who was the founder of the Hudson River School of painters. I used to use The Oxbow as an example of painting landscape in deep perspective.
Anyone who knows about Hoboken history, knows that Frank Sinatra was born here and grew up here. The rest of the room is dedicated to Sinatra. Photographs of his early years line the walls, and a life size cardboard Sinatra stands in a corner. I immediately recognized Bing Crosby in the photo with Frank. The street along the Hudson River is named Sinatra Drive.
I’m realizing that my writing and photographs are becoming like a show and tell. I wonder what cognitive age this resembles. Am I like a 12 year old adult, maybe a 10 year old, by todays standards, maybe 8. I understand that this is intellectual regression. I still want to share and communicate, but I am now more limited, and it’s using the skills I still retain to show and tell. I hope it isn’t tediously boring. I’d much rather be writing imaginative stories, but my reach into the world of imagination is pretty spotty at best. I can still follow a storyline, and choose great movies and series to watch on TV. My ability to delve into a place that is imaginative where I could express something original and creative is limited to the few dreams I still have. A recent one I remember- I was in my daughters apartment, and her boyfriend was going to take me to the subway so I could get home from Brooklyn. I told him that I didn’t think I should take the subway, and to call an Uber. As we were walking to the door, I looked into the bedroom where my daughter was sitting on the bed. Her boyfriend dressed differently was walking into the bedroom. He was both walking me to the door, and also walking into the bedroom. There was TWO of him. I have read that in Lewy bodies dementia, people sometimes see two of the same person– but in a dream!!!? Maybe I have Lewy bodies too.
I think my frontal lobes are damaged. I am not able to think of a plot, details, a storyline. I used to. I used to write stories all the time. I’ve read that these come from the frontal lobes. The creative sweet spot. My sweet spot is gone.
We walked down to the room that contains masses of CD’s and DVD’s. My husband went to the front desk to renew his library card, at my suggestion. I looked at covers of the CD’s and spotted one by Sade. I snapped a photo of it and texted it to my daughter, saying remember her? She wrote back, Of course. Soundtrack of my childhood.
I wanted to go home by this point. The library was hot and stuffy. We stepped outside and I snapped a photo of the park across the street. This is the park I would so effortlessly ride my bike through on route to the PATH train, where I’d lock it up and take the train. The park where I’d accompany students on their breaks. The park where Marlon Brando and Eva Marie Saint shot their famous love scene in the movie, On The Waterfront.
I’d walk through it every day for many years. Now just seeing it is a kind of Alzheimer’s Disneyland for me, as I stay inside so much.
We walked along Park Avenue and passed the school where I used teach. The lights were on the fourth floor art room where I used to teach. I have not heard from any of the faculty I was friends with for so many years. I assume they must know I have Alzheimer’s, since I did tell one colleague when I resigned. I’ve contemplated writing to some of them and telling them, but what would they say? So sorry to hear that. Is there anything I can do? Well… it would be nice to see your face again. Maybe you can stop by when I’m finally dressed, groomed and ready, some afternoon? I think it might shock them, and what happens if I start babbling something incoherent? That would be extremely embarrassing. And of course, I would be hurt if they didn’t offer to come and see me. A woman whose sons were my students, and who I recommended to the board of trustees of the school, had a mom who had later onset Alzheimer’s. I’ve considered writing to her, and asking her to write something about Alzheimer’s and my years of dedicated service as a great teacher and chair of the department. Make people aware of this disease. De – stigmatize it. But I know better, despite putting this on my to-do list every day. As soon as people hear the word Alzheimer’s, it strikes fear into their hearts and minds. Almost everyone I’ve told has disappeared. Even people who used to visit from the synagogue have taken a hike. So I have disappeared and am invisible to these people I knew and worked with for twenty years. Is this withdrawal or caution?
8 thoughts on “The Cardinal Truth”
Frank Sinatra was my mom’s favorite singer. My sister had his music playing on her laptop in Mom’s ICU room while she was transitioning to the next stage of her life and it calmed everyone there. One of Mom’s great pleasures was being able to get his autograph when she was a teenager at the Geary Theater in San Francisco on her program, which my sister still has. Bing Crosby was my favorite from that era as we grew up listening to my parent’s music. I love your “show and tell” so please keep sharing your photos, drawings and paintings, and memories. They educate me, stir my memories and let me get to know you even though we’ve never met. I intend soon to go back through your blogs and save each one so that I can share them with people so they can understand others who are dealing with the situation that you are so they will do better as family members and care partners. Thank you for your honesty and candor. You are a lovely person and an incredible teacher.
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Dear ZuZu –
Many many years ago when I taught art in Newark, New Jersey at a school run by Benedictine monks at a Benedictine monastery, I used to say, if I can reach one student with art, then I have done my job. Now that I have this tragically unfortunate disease, and write this blog, I see that reaching you is reaching that one person who cares to read and learn from me and comment. It’s a gift to me that you continue to read and write to me. I am trying to not cross over to the “other side”. Despite losing skills and abilities, and experiencing progression of Alzheimer’s, the fact that I am still able to do the blog, is evidence that I haven’t entirely lost it.
Please pardon me if I don’t remember but did you tell me your mom had Alzheimer’s? Was it old age onset? If so how was she diagnosed? What was her story? As you know, younger onset is so very different from when a person gets this disease when they are old, meaning in their later 70’s, 80’s or 90’s. It goes fast and the brain changes quickly. As you know it becomes harder and harder to live in the community and function normally.
Frank Sinatra was great of course, a supreme talent, and will live on through his voice and music. He was an Italian kid who lived in what was a heavily Italian city, which is what Hoboken was then. I watched a documentary about Quincy Jones called Quincy. Frank saw that Quincy was a brilliant trumpeter and composer and Q became his arranger and played in his band. Frank’s awareness of Quincy’s talent and ability put Quincy Jones on the map and led to his stardom. Frank was anti-racist. He could see the person for their abilities, not their color. He was ahead of his time.
I really appreciate your comments. Thanks for writing and holding me in your esteem. My confidence is very very shaky now and you help to boost my morale.
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As I’ve said before I wish I lived closer so I could visit you and sit to talk over coffee or tea. So instead we must talk with these notes. But it is better I think because you communicate best with writing, so it’s all good. I’ve got my tea and I love to write. I was a teacher for a while, you were a teacher, so we can bring out the best in each other.
My mother in law had Alzheimer’s, and she passed in 2007 at the age of 91. She had later onset dementia and we cared for her for about 8 years before she died. It was difficult for her because she knew something was wrong but never really understood what it was. I think that was a combination of not having a lot of education and because she grew up in an age of people not really understanding Alzheimer’s as we now do. I had a knowledge of it from a man I worked with over the phone at Guilford Mills. He was a salesman from New York whose wife had early onset like you. She was an English professor at Columbia and had to stop teaching before she was 60 and he cared for her at home with the help of his brother and daughter who was going to law school. He was one of the original founders of the Alzheimer’s Association in NYC in the late 1970s and would talk to me on the phone about her while we waited on orders to be filled. When I saw the signs that my mother in law had Alzheimer’s I began talking with her doctor and family. It was difficult to convince them that her behaviors weren’t just “quirks” or because she was raised during the Depression. We cared for her in her own home as long as possible, but in 2005 due to her leg being amputated below her knee from a blood clot she was placed in a nursing facility since we couldn’t watch over her 24 hours a day. We did have someone from our family at the facility with her every day from 10 am til 10 pm to keep her company and be sure she was being cared for. It was an intense time for her and us. She eventually passed because she had a major stroke that paralyzed the side opposite her amputation and got sepsis in her foot.
She always knew who we were, I think because we saw her almost every day. She did have trouble remembering people who didn’t visit her often. We never tried to trick her by asking, “Do you know who I am?” When I’d go into her room I’d always say, “Hey, Mama, it’s me, Deborah.” She knew I belonged to her and was married to her son, although sometimes she thought her son was her husband, and that her oldest daughter was her sister. We didn’t correct her, we just let it go. We didn’t want to make her embarrassed or uncomfortable. She often thought the nursing facility was HER home and wanted to know why we let all “those” people come to live there without asking her, and she’d get mad as hell at us because she had to clean up after them! On days like that, we’d take her outside to the garden and sunshine to see the flowers which seemed to calm her down. What seemed to bother her most was not being in control of her life, decision making and being a bother to us. We tried to let her make as many decisions as possible, guided her decisions with fancy talking and when we had to make decisions for her we did our best to let her know we were making them because we thought they were decisions she would have made had her mind been thinking the way it used to when it wasn’t stolen from her. It was hard watching her think so hard and not be able to make sense of that, of the thought that she should understand what we were saying was right but it wasn’t to her. She tried so hard to trust us and mostly did. I felt good that she mostly trusted me even though I came along late in life for her as both her son and I were in second marriages.
My mom, who loved Frank Sinatra, lived 3,000 miles away in California near San Francisco. She died Jan. 1, 2017. She had fallen off a bed in 2002 and broke her neck which left her a quadriplegic for the next 14 years. Once a year or so my husband and I would go to my parent’s home to visit, do things they needed help with and try to problem solve. It was during the same time we were caring for his mom back here in North Carolina. While I was home here I spent most of my time looking for help for them back there like social services, grants, agencies that could help them, funding and such. Mom was a very different person after her injury and it was a really hard time for our family emotionally and financially. It was especially hard for me because I’ve been out of work on medical disability since 1992 with chronic medical issues that have kept me from working and meant that doing the kind of physical things either mother needed was virtually impossible. I’ve had a lot of trouble understanding what God’s purpose was for me, for them, regarding the whole situation. One mom had a good body that couldn’t think right and the other had a useless body with a mind that worked perfectly, and they both had need of me but they were separated by 3,000 miles and I couldn’t physically care for either of them.
I did have a college education, I was a teacher, I did have my own medical issues and understanding of insurance and how the medical system worked, I understood emergency medicine because of my work background, I knew how to research and use the internet and computers, I spent a lot of time at home on the couch because I wasn’t well and I had a phone. I became the researcher, the one who called insurance companies, the agencies and services, and doctors, made the appointments, ordered the medicines, went to the doctors, ordered the supplies, made the applications, found the new treatments and devices, looked for facilities and options. I became the know-it-all. Then because caring for my mother in law had become so stressful for all of us I joined an Alzheimer’s Association Caregiver’s Support Group in 2005 which helped me so much. The people were kind, caring and had great ideas for helping cope with her behaviors which were difficult and with family members, also. A couple years later when the facilitator had to leave because of a job change the group asked me to be the leader and I’ve done that since, and now have two groups in the area, and do online help for people who have spinal cord injuries, traumatic brain injuries, neurological issues like ALS or Parkinson’s or MS.
That’s how I came across your blog. We sometimes have people in our group who have dementia/Alzheimer’s and they are reluctant to share how they feel about their experiences. You are one of only a few who has written so honestly about it and I appreciate it so much. The more I understand what you are thinking the more I can help others with dementia and their caregivers. Mike and I used to talk about what his mom must be thinking in her mind, and how confused she must feel when her world didn’t make sense to her. We wondered if she listened to us talk and only heard jumbled up words; if she woke up and saw a totally unfamiliar place; if she ever felt at home in her home when she saw things she recognized; if she ever relaxed when we told her she could trust us and that we were telling her the truth. It bothered us when we knew she was confused and we couldn’t put her mind at ease with any kind of explanation.
That is what will be difficult for your family when the time comes when nothing they say to you will convince you of their truth because your truth will not accept it. There’s no winning at that point and all they can do is agree with you, even though they know it’s not their truth. They have to learn that your world is the real world, not theirs. That’s difficult for most people, but it’s possible for families that are willing and creative and it’s what we share in our group.
The more I learn from you the more I can teach. We as teachers have to keep educating and I’m so thankful I have you to help guide me.
Thank you for sharing.
Keep up the good work.
You are a blessing.
Thanks Annie for the comment on the cardinal. Did you read the post?
Thank you for your beautiful words – you put them together and I am transported to a place where I can see a different perspective. I love that the robin and the cardinal call to mind the presence of your father. It is good to forgive and release, even by inches, those who hurt us. I am also on that journey, but so often too busy to give it thought. So many broken people are never given the opportunity, as you have been given, to stop and consider and think and pray and release.
Minna, I always look forward to your posts.
You say: “I still want to share and communicate, but I am now more limited, and it’s using the skills I still retain to show and tell. I hope it isn’t tediously boring.”
I say: Call it showing and telling if you like, but I find your writing searingly honest and deeply insightful. So maybe Suddenly Mad isn’t structured the way they teach it in Creative Writing 101 with tight plot-lines, suspenseful chapter-endings, snappy paragraphs … but then Virginia Woolf and James Joyce would both have failed that course too. Your work is in their tradition, and in a new way, you’re still every bit an artist, just with different tools.
And who said that art was ever meant to be easy?
Separately, I was particularly interested in your last paragraph. The separation that dementia brings, the stigma, the fear that the word Alzheimer’s instils in others. Don’t you find that’s almost the worst thing? It’s happened with us too. Admittedly Lena’s many close friends are scattered all over the world, but these days almost nobody drops by to visit as they always used to. Even Lena’s own brother was scared before he came to visit recently, not sure how he should handle the new situation. I think people are worried about their own discomfiture.
But the interesting thing is that as soon as I post a picture or a link to a story on Facebook mentioning Lena’s name, ALL her friends respond immediately. It’s not that they’ve forgotten or don’t care.
You say that you ‘assume’ old colleagues at the faculty know about your Alzheimers. That implies they don’t know about ‘Suddenly Mad’. My suggestion? Find a way to let some of the people you know best see what you’re writing. Trust the quality of your work. Use Facebook, or wherever they congregate, to let them know about it. I’m quite sure the response will surprise and please you. And who knows what that might trigger?
Hello Alan, I have been thinking about you and headed over to your blog The Care Combine. Saw a post from December about saffransbullar. Reminded me of challah, a Jewish bread I used to love and have with Shabbat dinner. It’s been a long time since we’ve had challah here. How are you fairing and how are things with Lena. Any progress with creating activity through The Care Combine?
I took your advise and shared my blog with a former student, Raphael, who was my favorite. He’s completing university and in his senior year. He wrote me and sent me some of his drawings, which I included in my last post. They are illustrations for a class he took called “Problem of Suffering” and he illustrated his responses to the first chapter of the Book of Job. Did you see them? They are brilliant! He offered to visit and although I hope he does, I am ambivilent. There is an element of shame in how much I have changed and that this disease changed the person I was into someone who is aware of my limitations.
In a sense the unawareness that apparently comes with further progression shields the person with dementia from shame. At least that seems to be the case in your description of Lena. She is free of self consciousness it seems. Is that so?