A newly constructed personality

Suddenly Mad- A newly constructed personality (drawing of my husband Wayne)Portrait of my husband, February 2019

I read on Alzconnected (www.alzconnected.org), a post by a man that uses the avatar Crushed, that he thinks the person who has Alzheimer’s works to create a personality out of whatever fragments are left. He thought of the movie Apollo 13 and the efforts of the astronauts to create an emergency return system out of the bits and fragments of the spacecraft that still worked. He went on to say, the brain reconstructs itself, there is no conscious act from a person. He said there is no “Who”. He said it’s no different from the brain patching itself after a stroke. He said what made his wife who she was – was memory and personality, but there is a difference when you reconstruct something. Like George Washington’s axe with three new heads and four new handles. It’s not the same. He said he supports the person in there (his wife) since she has no one else.

I have to agree, even though I am not at the stage his wife is (she is 66 and has had Alz for 7 years and is in a memory care facility). She doesn’t recognize his daughters and says she thinks of him as a kind presence who brings her ice cream and cake). I still know my husband, and my children and I know my grandchildren who are babies. I know their names and am not forgetting people who are in my life, and former friends and colleagues who I saw everyday when I was still teaching. Yet I have changed and keep changing as this disease switches the lights in my brain on and off. I too am busy reconstructing what I hold onto of a shattered world.

On my walks I notice things. These are fragments. I piece together my experience by noting the things I see, and taking photographs. There are anonymous photos of people, places and objects. I am constructing meaning by making a visual diary of what I see. A car, a pink luminescent light in a window, children playing in the park. I categorize these images according to how they make me feel. Since I still have my memory and remember who I am and who I was and what I have done in my life, the photographs that have the most gravity for me are those that make me aware that my current life is now severed from my past life.

Suddenly Mad- A newly constructed personality (walking with Theresa on Thursday)Walking with Theresa my companion, last Thursday

Theresa has taken care of many people with Alzheimer’s. She told me about Fred who was an illustrator, who was 68 when she started working with him. She said he had the disease for around 3 years when she met him, and in the beginning he would do the things I do – draw from photographs, read, do puzzles. She told me he lived 4 more years, gradually losing more and more ability. His wife ended up feeding him when he would make a mess trying to feed himself. When he became incontinent, unable to speak and bed bound she couldn’t take care of him and placed him in a nursing home where he died. She told me he could no longer swallow and his wife agreed to have a feeding tube installed. 4 years! Does this mean I will be around declining for 3 or 4 more years. End like that? NO. No feeding tube. I have a DNR and I would just want palliative care. Keep me as comfortable as possible and I will know when to let go.

Suddenly Mad- A newly constructed personality (kids and their miniature golf sets at Columbus Park)Children in the park with their dad, with their miniature golf sets

Hoboken has become a highly gentrified community, mostly white, and there are young couples with kids, who make a lot of money. This photo tells the story of a dad who golfs and is teaching his young sons to golf. They have their own little golf club sets and a child sized golf cart. Maybe the dad’s a golf pro. Or maybe he’s just a dad who wants to share his favorite hobby with his sons.

Suddenly Mad- A newly constructed personality (a window with pink light inside - things I notice)A small terrace with a window/door emitting a luminescent pink light.

A mysterious pink light. Who lives there? What is their story?

Suddenly Mad- A newly constructed personality (things I notice - a white Fiat)A white Fiat photographed before turning the corner.

Rich people with disposable cash populate the town now. You can always tell by the cars.

I turn the corner and walk past the movie theater, past the posters advertising what is playing and upcoming movies. I see and take a photograph of the mural. I always see it when I get to the end of this block. The mural was created by my former student, David, who is now 31 and a working artist. I try and classify what he does. Is he a great artist or a great illustrator who paints murals? His style is versatile and I know that he captures the zeitgeist of this period in time. Painting murals developed from being a graffiti artist, who used spray paint on the sides of buildings. But his ability to render figures, faces, and architecture, realistically, made him tackle much more than a graffiti style. He is able to paint anything and his style is not derivative. The paintings are technically brilliant and he’s become an artist that wows his audience. David’s development as an artist makes me think of the development of the late James Rosenquist http://www.jamesrosenquiststudio.com/ who began as a billboard painter, and ended up capturing the zeitgeist of the 60’s in his enormous Pop art paintings. David’s work operates in that realm, encapsulating the complexity of what it means to be alive in the 21st century.

I know that my encouragement factored largely in his decision to pursue becoming an artist. I met him when he was 15 and it struck me as odd that he held a pencil with a clenched fist, the stem and point held in a power grasp. I’ve read that this is what a child does initially when coloring, and is considered an inefficient grasp. It’s what children under age 4 do when holding a crayon or pencil. It expends a lot of energy and supposedly the child can’t perform small precise movements. Between the ages of 4 1/2 and 6 the child is supposed to have a dynamic tripod grasp. This is where the writing or drawing tool is held by the thumb, index and middle finger, and the pencil is controlled with finger movement rather than the hand or arm. Yet David who never “learned” to hold a pencil or a drawing instrument this way, became an extremely skilled artist who draws and paints realistically and masterfully, and has painted murals all over the world. So much for the idea of the fisted grasp being an impediment to artistic development. As his teacher, I never tried to correct it. It was obvious that he had excellent fine motor skills despite holding writing and drawing instruments in a closed fist.

Suddenly Mad- A newly constructed personality (Hoboken mural by David Solan)

This is the mural he was commissioned to paint that I pass on my walking route. It depicts Dorothy McNeil, a prominent presence at Hoboken’s Club Zanzibar that showcased performances by popular African-American entertainers throughout the 1960s and 1970’s, and with camera in hand is the noted documentary photographer Dorothea Lange, who was born in Hoboken in 1895. And pitching a bat is Hoboken native Maria Pepe, the first girl to play Little League baseball, whose legacy is ending the ban on girls in Little League baseball.

David knows I have Alzheimer’s. Yet he has never reached out to me since the diagnosis. Before that he would come to my house and show me images of his work, and talk. I would go to his gallery shows and bought a painting which hangs in my living room. His girlfriend who was a very close friend to my daughter before I was diagnosed, is no longer in touch with my daughter or me either. I knew her for fifteen years and considered her a part of my family. She worked as my assistant the last year before I retired. By that time it was obvious that something was changing in me and that I needed help. I was so grateful for her assistance that year. As a high school student she studied sculpture with me. I recognized and encouraged her talent. I wrote numerous recommendation letters for her college applications, and she attended my alma mater Pratt Institute. She went on to study art therapy at New York University, and is now a practicing art therapist. She has worked with people who have dementia and understood the signs of my encroaching illness when it was in the early stages. She knows full well about my diagnosis, and in fact accompanied me to one of my neurologist appointments just after I was diagnosed. She witnessed the anxiety and confusion that the disease was causing me as I tried to continue to teach and hold down an active schedule. She spent hours talking with me and offering support. Then she stopped. She cut herself off from any further contact. She hasn’t been in touch with me since the summer of 2017. I send her my blog. Not sure if she reads it. I hope she does.

I am not nearly as physically mobile as I was when I last saw her. She would be saddened to see this. I am certainly much more affected by the disease physically now, perhaps even more than cognitively. My ability to function and get through each day is hampered by changes in mobility, sleep disruption, visual and perceptual changes and a s-l-o-w-i-n-g down.

But I push to keep walking and every very time I turn that corner and walk on that block, I see that mural that David created that honors Hoboken’s history. I think of both of them, these two students who I had a major impact on and who I always supported and helped, and were in turn so much a part of my life. I am proud of them and their accomplishments and their relationship. But I question – do they ever think about me now? Am I something that remains in their past, like a ghost? Have they erased me from their memory?

Suddenly Mad- A newly constructed personality (Hoboken mural by aka Distort - David Solan who was my student)

My friend Dina, who visits me every few weeks, and whose daughter was also my student, asked me if I wanted her to speak to any of my former colleagues about being in touch with me, and possibly visiting. I said yes, and she told me she spoke with a man  who teaches American history that I knew for 20 years  He  wrote me an email updating me about what was happening at the school, and noted how he was inviting a 90 year old Holocaust survivor who had been on the Kindertransport, to speak at History Day (He is aware of my Holocaust film work, that I’m a child of deceased survivors, and that I’d been an American Fulbright to Poland). There was no mention in his email that he knew about my diagnosis or that Dina had spoken or written to him.

I wrote him back and poured my heart out to him. I told him that my retirement was not something I wanted. I told him about my diagnosis. I said it was only because of this disease that I had to retire. I recalled the trip I organized in which we chaperoned 18 students to Greece to see the art and archeological sites. I reminded him that we saw the Acropolis together. I wrote how sad and strange it is that life can turn on a dime and how  Alzheimer’s has changed everything for me. I told him that I’m aware that the disease has a tremendous stigma. That it makes people afraid to reveal their diagnosis. I applauded him on his many achievements, and his wonderful relationship with his wife who also teaches at the school now. I asked him to write back to me. That the disease is so isolating. Then silence. No response. To this day there has been no further response from him.

I chastise myself for being so naive. Thinking I could be open about my diagnosis. Encouraging him to reach out to me. The lack of any response after I opened up to him,  makes me so sad. I took the risk, thinking he would sensitively write back and offer some sort of support. Offer his friendship. Some compassion. Offer to visit me. The school is only 3 blocks from my house. What was I thinking? Those 3 blocks might as well be an ocean away. Why am I persona non grata because I have Alzheimer’s?  Why is it so severely stigmatized?

I can’t effect the way people react to the news of my having this disease.

Suddenly Mad- A newly constructed personality (2008 photo as an American Fulbright to Poland)Happier days. 2008 as an American Fulbright to Poland.

The photograph above was taken at the American ambassador’s residence in Warsaw in 2008. The gap between then and now is eleven years but might as well be light years.

In sharing the diagnosis now, I thought I was humanizing the disease for others. Teaching. Showing that this can happen to anyone. That anyone can become helpless in the face of a neurodegenerative disease. That we plan our lives and think we are invincible. And then suddenly we are not. Maybe that’s what strikes fear. Showing how random fate can be.

I wanted to bring awareness to what is becoming the biggest health scourge of this post modern age. I didn’t want to hide. I wanted to show that the disease is not about forgetting everything. That I am not gone. I have changed but have not disappeared.

So, I’ve learned that compassion is not very high on people’s priority list. It does not matter if you’ve known the person for decades, worked with them, been their colleague or their friend. I’ve learned that the mere mention of the word Alzheimer’s makes people disengage. It’s the ultimate game changer. Most people would rather look away and not communicate. That’s what I’ve learned about the stigma of Alzheimer’s disease.

People with dementia have the same needs as everyone else for social interaction and engagement in meaningful activities. How can I maintain my self-esteem if writing openly about having this illness, and what it’s like to live with it, to someone I’ve known for decades, is met by stony silence? This is about social exclusion, being avoided and treated differently.

If you take a person, because they have Alzheimer’s, away from their job, their former life, all the people that used to interact with them, and leave them isolated with no access to their former lives, no friends, they are going to become extremely depressed. It strips one of motivation. It tells the person to fade away faster.

I think of Auguste Deter, the first patient Alois Alzheimer’s diagnosed after she died at age 55. When he met her, Dr. Alzheimer asked her many questions, and later asked again to see if she remembered. He told her to write her name. She tried to, but would forget the rest and repeat: “I have lost myself.” (German: “Ich habe mich verloren.”) He later put her in an isolation room for a while. When he released her, she would run out screaming, “I will not be cut. I do not cut myself.” This woman was locked in a room in isolation because he did not know what to do with her. Of course she went stark raving mad!

Dr. Alzheimer concluded that she had no sense of time or place. She could barely remember details of her life and frequently gave answers that had nothing to do with the question and were incoherent. Her moods changed rapidly between anxiety, mistrust, withdrawal and ‘whininess’. It was not the first time that Dr. Alzheimer had seen a complete degeneration of the psyche in patients, but previously the patients had been in their seventies. Ms. Deter piqued his curiosity because she was much younger. In the weeks following, he continued to question her and record her responses. She frequently responded, “Oh, God!”, and, “I have lost myself, so to say”. She seemed to be consciously aware of her helplessness. Alzheimer called it the “Disease of Forgetfulness”.

In actuality people diagnosed with younger onset Alzheimer’s are all different. Some do change rapidly, but most do not lose themselves all at once. There is a long period in which a person knows and is aware that their brain is changing. They have not forgotten.

I hoped that by being open about having this disease with my former colleagues, and my former students, acknowledging that, yes, I need support, I would be met with compassion and could in some way reintegrate some of the people I’d worked with, played with, who I spent so much time with, into my life again. In some meaningful way. With honesty and authenticity.

Can people with dementia remain a part of their community, when there is stigma?

Fear is what drives the wedge between inclusion and contempt. I posit that the person who has Alzheimer’s will reconstruct their personality based on how they are seen and treated.

21 thoughts on “A newly constructed personality

  1. That all sounds very difficult and tiring, to be struggling with the effects of the disease and then also to be battling the effects that has on friends and former colleagues. It’s difficult to imagine what that must be like. But please don’t see it as a sign to “fade away faster”, you’re still valuable, and valued!

    Liked by 1 person

  2. Wow! So well written! Beautiful and such a sad story for you and those to whom you want to “contact”.

    I’m on the AD journey too, and it’s difficult for all, unfortunately. Being “dropped like a stone” or “avoided like a leper” is how I sometimes feel (fortunately not from personal experience – sorry, a poor joke!). People are so fear filled, as nobody wants to “loose their mind” and I and most, are so very fear filled. And we must cope, mostly, I’ve found, with minimal support. “It is what it is.” We, sufferers need to somehow show the leadership.

    I think words are important and “DCD” is a term with more “correctness” than AD or “Dementia” – we are not “demented”, supposedly “well” friends and family, (and medical professionals) we simply have a serious disease, an untreatable (at this time) disease, of our neurological “system”. And we NEED help, support and assistance.

    It’s not that complicated. And for all it’s difficult. Let’s change some words and try to make it easier for all.

    Please keep writing and living and as we say in Au “having a go” ✔️👏👍

    Liked by 2 people

    • Hi, Guy: I, too, really appreciated this blog post. I’m writing a book about dementia-inclusive communities and I agree with you about the need to change the language we use. It makes me angry when people who ought to know better talk about “dementia patient she” outside of a hospital or medical clinic. Also, not everyone has Alzheimer’s but still most people just talk about Alzheimer’s. I’m curious about what DCD stands for. Some people are starting to talk about NCDs (neuro-cognitive disorders) but I have problems with that, too. Thanks for any insight you can offer. Susan

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      • DCD – Degenerative Cognitive Disease – I throw these TLA’s about trying to get words that are meaningful and kind. If at all possible?! I ‘m, just in the last few hours, coming to the realisation (and your words are so encouraging – thank you so very much!) that we need to use the word “neurological” is perhaps better. How’s this – when our neurons “don’t fire correctly” it negatively effects – our “brain, our psyche and our behaviours” – difficult to be “normal” with those challenges – “demented” is perhaps an accurate but most unkind word.

        Liked by 1 person

      • Hello Susan, What did you appreciate about my post? I’d like to hear directly from you if you would oblige. Alzheimer’s is a complex disease. The hallmark of it is that it progresses. If it does not progress, it is mild cognitive impairment. Many with Alzheimer’s have mixed dementia, especially vascular changes. Some also have Lewy bodies along with Alzheimer’s. It is often marked by spontaneous onset, though in the prodromal state there are signs and symptoms. The Mayo clinic has found after autopsy many who were diagnosed with Alzheimer’s actually had Supra Nuclear Palsy, or Creutzfeldt – Jacob disease. Neuro-cognitive disorders is a very broad label that can encompass so many brain illnesses that it’s a useless term https://medlineplus.gov/ency/article/001401.htm You are correct, not everyone has Alzheimer’s but still most people talk about Alzheimer’s. It’s like calling a rose and a tulip, a flower. No specificity.

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    • Thanks for the compliment on my writing. Apparently I am getting through to more people and that’s heartening. I’m too far progressed to go to conventions and be a speaker and advocate for awareness of Alz. As they say “the pen is mightier than the sword”.
      I am curious when you say you are on the AD journey too. Did you have a diagnosis through brain imaging, and have you experienced progression? What are your days like? What is it like for you?
      Forgive me for not knowing what DCD stands for. I’m not up on the politically correct way to name this. I think you know that each person who has this diagnosis is different and progresses at different rates with different aspects of their bodies and brains affected. Unfortunately the damned thing, whatever we decide to call it, progresses.

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      • Thanks so much for your reply. I’m due to visit my second specialist next week and maybe get a diagnosis after more than two years of testing etc, etc and two specialists and moving to a new state?!

        I “riff” with words and TLA’s and DCD is debilitating cognitive disease?! I don’t like Demented and Dementia, they seem unkind and insensitive words?!

        I’m working on Debilitating Neurological Disease – DND and were not Just “living with” we are unfortunately “victims of” an untreatable DND.

        Some thoughts for today …..
        A neurological disease that negatively challenges the brain, the body and the behaviour, of it’s victim – and thus, these victims can seem “demented” – a most degrading word!

        Calling the victim’s disease “Dementia” is perhaps an unproductive and unkind word, for suffers of, (in early 2019), an untreatable disease, who can often be, confused, scared, debilitated and angry.

        Please be kind, quiet and gentle, with people “living with the big D”.

        We are not dangerous and this neurological disease is very trying for us victims, as it too, can unfortunately be for you, “well” people.

        What do you sense, feel and think about my words?

        Liked by 1 person

  3. Minna, one would think in today’s world where AD is discussed quite frequently via t.v. media and social media, that people wouldn’t be so afraid to talk about it, especially with a former colleague. However, I’ve found those are exactly the people who are timid and afraid to talk about it. These are people who don’t know how to respond because they worry they might say the wrong thing and offend or hurt feelings. They have no idea their “no response” causes the truly hurt feelings. It’s not like a person is contagious because they have dementia! People should become educated on this topic because it is becoming more and more prevalent among baby boomers. It’s not hard to find information about dementia/AD, there’s information everywhere.
    I’m so sorry your colleague has not responded. Hopefully he is giving serious thought about what he would like to say to you and have it be uplifting. I can tell you are a beautiful person inside and out, Minna. I look forward to your blogs, photos and your beautiful art! You still have a lot of talent to share. Thank you for sharing such a personal time in your life. xox

    Liked by 2 people

  4. Thank you for another interesting and informative post, Minna. I am very surprised and puzzled by how your former students and colleagues responses or non responses. I would think that they are well educated. But then educated does not mean informed. You are making a difference and humanizing your diagnosis. I think all of us have a brain thing. It’s a matter of degrees. It’s taken me all day, no 3 days to have a shower. I’m a bit under the weather. Not ghastly ill but still, it is a struggle to do things. My shower thing made me think of how you struggle with your days. And yet you still write your wonderful posts. You inspire me to try just a little more to improve my days when it is difficult.

    Lily

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  5. I agree with what Linda posted. People have no idea what to do with many illnesses.
    AD, LBD, VD, FTD can very difficult for people to interact with these illnesses. There is rejection. There is a vast lack of education at least in our country. People with little to no experience shy away for more than one reason. I do not know what to say. I do not want to do anything hurtful. What would I do that would be helpful?
    I think the comfort level is going to come slowly and it will be through education…informal education. Exposure.
    Minna….Pouring your heart and soul out to someone can be overwhelming. How about instead how about walking over to the school and say hi to that history teacher. Take him some daffodils. Take him an article you think might be of interest to him. Share a topic mutually interesting.
    Write a note to David. He absolutely does think of you but has not a clue what to do. Tell him how you enjoyed the mural. Maybe meet for coffee and then take a picture of him in front of his work.
    Others who feel that friends/relatives/ business associates have dropped out of your world have probably got it right but the reason is not that they do not care. They do not know what to do or say.
    OK, just one caregivers take.

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  6. Dear Minna, thank you for another beautiful post. And I love your comment, “My body and my brain may fail me, but my soul is learning.” That was my experience as a hospice nurse, as the body declines the soul expands and shines. Beautiful to witness.
    Unfortunately, we had the same experience with some of our friends. The friendship my husband had with Mike dated back to his army days. They stayed in touch all these years and visited each other on a regular basis. On their last visit we told Mike and his wife about my husband’s diagnosis. The way they reacted let me know that we would never see them again, even though my husband would have enjoyed many more visits. C’est la vie.

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    • Alz+ has said it, that our internet friends become more our friends than those we knew who do not know how to relate anymore. People are afraid of what they can’t understand. You help me understand I am not the only one.

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