AN ALZHEIMER’S LOVE STORY

AN ALZHEIMER’S LOVE STORY

By Michael Horvich

Yesterday, at the Evanston Art Center, I made a presentation which included a talk on "Living Well With Alzheimer's," viewing the documentary "ALZHEIMER'S: A Love story," and addressing "The Importance of Art in Dementia Care." 

We were joined by Grace Pelzer talking about Dance Movement and Amanda Ziemba talking about Music Therapy. 

A posthumous show of Gregory's paintings contained 50+ pieces. 

Refreshments were served. The event was attended by +/- 50 people. 

This is a slide show of the presentation made on June 30 at the Evanston Art Center, 
"The Importance of Art in Dementia Care." Photos by Jake Blook and Jan Yourist.

EVANSTON ART CENTER

SUNDAY, JUNE 30, 2019

1:30—3:00

Good Afternoon. My name is Michael Horvich and I will be spending the next hour or so with you.

I am a little nervous but this should be much easier than sharing the stage with twenty other candidates and trying to convince you to vote for me!

Also, I am so pleased that you have decided to spend today with ME instead of going to the parade downtown. I assure you, however, there will be GAY PRIDE here today as well!

Just a few announcements before we begin:

Regarding Cell Phones: If your daughter or grand-daughter has her baby and calls, answer the phone and let us know so we can celebrate with you.

If you need to un-wrap Candy: That’s OK as long as you share some with me.

Use of photography equipment: No flash but please take photos and send me copies to be shared online.

Use of recording equipment: No need as the text of my presentation is on my web site, along with links to my other past presentations and current projects. www.horvich.com

Bathrooms are behind you to the left.

Feel free to get more refreshments at any time.

After the presentations, be sure to visit the gallery located just behind you.

It features Gregory’s artwork, my poetry volumes. 

There is a bibliography and a number of handouts and a free pen to take home.

Gregory’s photos and my two poetry volumes are for sale and the proceeds will be shared by the Evanston Art Center and the More Than Ever Education Fund as administered by La Casa Norte in Gregory’s memory.

There is a piggy bank in case you want to make a donation to Gregory’s Memorial Education Fund.

AND NOW WE BEGIN

PERSONAL

The story I am about to share with you is a very personal one. 

I’m comfortable with CRYING in front of you, however, it is very difficult to cry … and talk at the same time. 

If I do get choked up, I will pause … take a few deep breaths … and be right back … probably before you even notice I have gone.

TODAY’S PRESENTATION

GREGORY, my husband of over 41 years, was diagnosed with DEMENTIA, most likely ALZHEIMER’S, in the 29th year of our relationship. He was 55 years old. Together, we were on the Dementia Journey for 12 years. 

FIRST I will give a fifteen-minute, BRIEF overview of THAT journey.

Next, we will view a 15-minute documentary called “ALZHEIMER’S: A Love Story.” It has received local, national, & international acclaim at over 90 film festivals and won over 35 awards, the two most prestigious from the Cannes Film Festival.

After that, I will share a series of stories that illustrate “The Importance of Art in Dementia Care.” 

This will be followed by a panel discussion on the topic including Grace Pelzer, Dance/Movement Therapist at the House of Welcome, and Amanda Ziemba, a Neurologic Music Therapist at the Institute for Therapy through the Arts.

We will end today's presentation with a question and answer session.

NOT AN EXPERT

Let me say that I am NOT here today as an EXPERT in the field of Dementia and Alzheimer’s … but rather as someone who has EXPERIENCED it … DIRECTLY and INTENSELY.

ABOUT MICHAEL

Let me tell you a little about me … I hold a Bachelor’s Degree in Liberal Arts, a Master’s Degree in Education, and an Advanced Certificate in Ed Administration & Supervision.

I have worked with children in regular education as well as children w/special needs.

I created and was an administrator for a Talented and Gifted Education Program.

I taught Junior High Spanish as well as a number of university-level courses & seminars.

Retired for 25 years, I’ve been more than active as an educator, speaker, writer, poet, blogger, actor, opera supernumerary, children’s museum curator, flea circus ringmaster, and Dementia /Alzheimer’s caregiver partner.

ABOUT GREGORY

GREGORY earned a Bachelor’s Degree from Wesleyan University in Connecticut & received his Master’s Degree from Harvard University in Architecture, with Phi Beta Kappa recognition. 

He ran his own high-end architecture & interior design firm and served as architect of record for renovations at the Baha’i National Shrine in Wilmette. 

Gregory was a writer, an artist, was well versed in music and art history, was a concert-level pianist, spoke French, and won many awards for his architecture and interior design skills. 

THE VOCABULARY

Taking a closer look at commonly used Dementia vocabulary, with the hopes of helping to modify it, Gregory was NOT a VICTIM of Alzheimer’s ... but rather a HERO. 

Gregory did not SUFFER from DEMENTIA/ ALZHEIMER’S, but rather LIVED as WELL as possible, refusing to accept the diagnosis as a “DEATH SENTENCE.” 

THE DIAGNOSIS

I NEVER referred to THE diagnosis as HIS but always OUR diagnosis. 

Actually, we were relieved on receiving the diagnosis because now we had an idea of what we had been experiencing and we could prepare for the future … 

… although at the time we did not REALLY understand the nature of the roller coaster ride we would be on until his death. 

MEDICAL ASPECTS

The DOCTORS were able to RULE OUT what was NOT going on, for example, Vitamin B deficiency, small strokes, Parkinson’s, etc.

But being a PROGRESSIVE, INCURABLE disease, what were they REALLY able to do during those EARLY and MIDDLE stages except confirm my existing observations?

They prescribed drugs like ARICEPT and NAMENDA, which are purported to slow down the disease, but how does one measure … “SLOW DOWN” & against what BASELINE? 

NEW SENSE: FAMILY & HOME

I did not spend time MEDICALIZING our experience but worked very hard creating a NEW SENSE OF FAMILY, HOME, and RELATIONSHIP to fit Gregory’s changing needs.

For the most part, he dealt with the disease in his USUAL CALM manner. 

At a certain point later, the Alzheimer’s created a BUFFER which kept him from being fully aware of the changes through which he was going.

PROGRESS

I remember often thinking “If the disease would only STOP PROGRESSING at this point I would be content.” 

But PROGRESS it did

 … and the RESTING, level periods were shorter and the need to re-think and re-establish NORMALCY continued - sometimes on a DAILY basis - sometimes HOURLY … sometimes by the MINUTE.

Being able to monitor and provide for Gregory’s increasing needs, in a RESPECTFUL UNDERSTANDING way, yet not letting him become overly frustrated, was more and more difficult. 

My ROLE in providing for OUR life experiences continued to INCREASE over time. 

My MAIN JOB became making sure Gregory knew WHO he was and WHERE he was. That he was in the RIGHT PLACE doing the RIGHT THING at the RIGHT TIME. 

And if LOST; physically or emotionally, that 

I / WE would ALWAYS FIND each other.

He always KNEW who I was, his LOVE for me, and my PLACE in his life.

He knew he could TRUST me. He knew that HE was SAFE, LOVED, VALUED, and RESPECTED.

NOT A DEATH SENTENCE

The times were not EASY, but we persevered & did a good job! I was able to support him by helping him to be free of DAILY WORRIES, RESPONSIBILITIES, & FEAR. 

I was able to help him COMPENSATE for his changing abilities while always trying to make sure that the RESPECT & COMMUNICATION which defined our relationship never faltered. 

YES, there were times when he became depressed, sad, frustrated, and fearful … but most of the time he was content and happy. 

The SAME was true for me!

Gratefully, I was retired and had all the time in the world for him … and for us.

FAMILY and FRIENDS were available for support but they had lives of their own, lived all over the country, and even though they tried, they couldn’t REALLY understand what I was going through.

We closed Gregory’s business and our time was now our own. We were fortunate that our financial situation was good. 

I made sure that our daily life was FULL and RICH and MEANINGFUL. 

We enjoyed our condo & living in a very active Downtown Evanston, Il.  

We entertained, enjoyed family and friends in our home, ate out, cooked together, went to opera and theater events, and we were buoyed up by our pets with their unconditional love.

We traveled in the U.S., Europe, and Mexico. 

We were able to simplify our life … only keeping the most meaningful parts. 

We continued to be COMPASSIONATE with EACH OTHER, OURSELF, and THOSE AROUND US.

Our life was filled with much LAUGHTER as well as many TEARS; JOY, as well as SORROW. 

Above all, it was filled with LOVE and RESPECT and TRUST. 

LIEBERMAN CENTER

Gregory was at home for 10+ of his years living with dementia. 

His MEDICAL and PHYSICAL needs became so great during his last year and a half, that short of turning our home into a fully staffed 24/7 HOSPITAL WARD, I was not able to provide for his needs. 

I found an EXCELLENT memory care facility, The Lieberman Center, 10 minutes from home and I could easily visit every day sometimes twice. 

I felt some GUILT at having to move Gregory to a memory care facility. 

However, HIS new sense of community and belonging, the safe clean environment, the delicious meals, the medical support, and the presence of many people around him were all POSITIVE ATTRIBUTES of my decision and contributed to his well-being. 

I played an ACTIVE ROLE in determining Gregory’s health care & the care facility always RESPECTED my wishes as well as helping me to understand best practices. 

HOSPICE

Hospice joined our team and worked hand in hand with the memory center for the last 9 months of Gregory’s life. Their support was wonderful! 

They not only took good care of Gregory but also helped me to understand the trajectory of the Alzheimer’s and the process of dying.

PREPARING TO DIE

One day in early October 2015, I received a call from Hospice informing me that it looked like Gregory was preparing himself to die. 

He was NON-RESPONSIVE for three days. The night before he died, I crawled onto the narrow bed next to him. 

I hugged him and whispered, “Leave when you are ready. Don’t worry about me. I will miss you, but I will be OK.”

If he needed it … I gave him PERMISSION to die. I had done this several times before.

Now here is what I call the MIRACLE, and Gregory’s FINAL GIFT to me. 

I kissed him goodbye on his open mouth three times. On the third kiss, having been non-responsive for three days, in a COMA, Gregory opened his eyes briefly and kissed me back. 

On the next day, October 4, 2015, Gregory died. 

GRIEF

GREAT LOVE means GREAT GRIEF. I will always grieve at some level the loss of the love of my life, but that LOVE carries me forward as I continue to live a meaningful, useful life, and as I support others facing similar experiences.

FINAL COMMENTS

Gregory and my journey with Dementia was not easy, but we SUCCEEDED in getting through it with DIGNITY. 

We were not ALWAYS at our best ... but done with LOVE, KINDNESS, RESPECT UNDERSTANDING, and FORGIVENESS it was a time of RENEWED LOVE, QUALITY TIME TOGETHER, & many UNEXPECTED GIFTS. 

When Gregory and my adventure began, & still to this day; STIGMA, SOCIAL DEATH, and SILENCE surround the lives of many of those living w/Dementia. 

The MISUNDERSTANDINGS echo through the hallways of hospitals, medical school lecture rooms, textbooks and even possibly your own living room!

This is where our STORIES come in. They can rewrite the narrative. Stories can bring back the HUMANITY of a person with dementia AND their family. 

In facing and talking about death and illness, people find ways to HEALING. In this sense, healing does not necessarily mean curing a disease nor avoiding death …

…but rather creating a SHARED SOCIAL MEANING, UNDERSTANDING, and certain level of COMFORT.

It helps us GRIEVE and helps those of us still here to continue on.

It gives us the feeling that we are not alone, because … IN LIFE … WE … ARE … NOT …ALONE.    YOU … ARE … NOT ALONE.  

THANK YOU for allowing me to celebrate Gregory and my story with you today. 

THE DOCUMENTARY

Towards the end of Gregory’s life, he and I were the subjects of a documentary, ALZHEIMER’S: A Love Story which we are about to see.

It follows Gregory and me for a brief time towards the end of his life and was done in March 2015 by the son of Gregory’s college roommate and best friend.

Gabe, the son, created the documentary as part of the requirements for one of his college courses in film making at Chapman University, Dodge School of Media Arts in Orange, CA.

It has been accepted to over 90 film festivals locally, nationally, and worldwide. We have won over 35 awards, the most prestigious of which were two from the American Pavilion of the Cannes Film Festival.

The message, which I believe is a beautiful one, takes Gregory and my 41-year love relationship and our 12 years living with Alzheimer’s, and distills it into a moving 15-minute documentary. 

I think you will agree as you experience the story … that the same-sex couple issue … and the Alzheimer’s issue … almost seem to disappear.

What emerges is a story of ANY two people who love each other very much … and what happens to that love when any catastrophic disease strikes. 

Now, let’s watch. (For BLOG readers, you can rent the documentary on AMAZON for $2.99.

The Importance of Art in Dementia Care

This presentation was made by Michael on June 30, 2019, at the Evanston Art Center in Evanston, Illinois to an audience of +/- 50 people. There is a slide show taken during the presentation. Photos by Jake Bloom and Jan Yourist.

The Importance of Art in Dementia Care 

Dementia, one cause of which is Alzheimer’s Disease, is not just a memory problem, like many think. It includes cognitive issues as well as physical, mental, physiological, psychological, social, emotional, and medical … and is complicated by the many ways in which it expresses itself, usually different for each person affected!  

As the disease progresses, a person’s abilities, behavior, and needs change. As a person with Dementia’s abilities diminishes, it becomes more difficult for them to lead active, productive, meaningful lives. It becomes more difficult for them to engage with people and with their environment. The hours and days are very long and lonely when there is little they can do to fill their time. This can cause unrest, nervousness, boredom, and depression.

Those living with Dementia, like most everyone; need to continue to be active, productive, and involved with life. THE ARTS can help provide for these needs. It is especially important for people diagnosed with Dementia/Alzheimer’s who have been artistic all their life. 

ARTS, in general, refers to the theory, and physical creativity found in human societies and cultures.   Major types of the arts include literature (including drama, poetry, and prose), performing arts  (among them dance, music, and theater,)  and visual arts (including drawing, painting, filmmaking, architecture, ceramics, sculpting, and photography.)

Today I am focusing on Visual Art, however, all of the arts can help to improve the life of a person with Dementia. As their ability levels change; successful art projects, independently or with support from others, can still take place. These activities can range in complexity from painting a “masterpiece,” to “simple coloring,” to helping create decorations for a holiday party.

The following is GREGORY’S  ARTIST STATEMENT as written by Michael due to Gregory's failing use of language but taken from stories he told Michael over the years.  

QUOTE

“I guess that I have been artistically creative all my life. I was born on July 4, 1948, How creative is that?  

“As a very young boy, sitting at my Grandfather’s feet while he rocked and smoked his pipe, I built cities using Grandpa’s boyhood Anchor Stone Blocks. I attribute my career in architecture to my grandpa and those blocks! 

“As a young boy, I made rings and bracelets using Indian Seed Beads on a loom,  while sitting on a pier post, way out in the water of Lake Michigan, with my family just in out of sight working on their sailboat.  

“When I was eleven I designed and built a complete paper mâché Nativity with the usual cast of characters. 

“In my pre- and teen years, as well as an adult, I sketched a lot. I designed on paper, complexly authentic period buildings … which my mother said was idle-play because “no one build’s houses like that anymore. 

“She was proven wrong when, as an adult architect, for a client, I designed and built a five million dollar authentic reproduction turn of the century French Chateaux in Denver.

“As an architect and interior designer I used my art skills in many presentations to clients. 

“In 2010, when I met Nancy Rosen, whose mother Eileen lives in our condo building, there was an instant connection. Nancy, an amazingly prolific and talented oil painter took me under her wings and I began to develop my latest art form, working with oil sticks. 

“The paintings are on Stonehenge Paper that has been roughly gessoed. I begin each piece by studying the rough surface of the paper in silent contemplation until it “speaks” to me. Then I begin to paint and do not stop, nor look at the work from afar until I am finished with the piece. I automatically know when to begin and when to end a piece.  

“My work is abstract and shows broad, usually colorful strokes while at the same time I pay attention to detail. The ideas just seem to come from with-in, I know not where exactly.”  

“If you think you see a forest, or a landscape, or an animal … that is in your imagination, it is not necessarily what I painted.

“With Nancy Rosen, as artist/teacher/mentor/and friend, in a little over two years, I created close to 100 works of art. I am grateful to her!

END OF QUOTE

Gregory’s work was included in a two-person show at the Yourist/Bloom “Open Table Gallery in Evanston, part of a one-person show in Lincolnwood  which also featured encaustics by Nancy Rosen based on Gregory’s color palates,  and in a one-person show at the Lieberman Memory Care Center in Skokie where he lived for the last 18 months of his life. 

At each show, many of his works sold, whether because of their artistic value or because the people in his life wanted a piece by which to remember him. Either way, it made him feel good to sell a piece and to share his art.

It is said of Alzheimer's that new learning connections become difficult to make,  but Gregory succeeded in making new connections with his new oil stick art while the old connections failed.

It might be said that Gregory was an “Outsider Artist” without formal artistic training, at least no training or experience in painting with oils. 

But I have to believe that his past connections with art helped, including his education and experience in architecture and interior design; his creative nature, eye for color, and awareness of scale; as well as his maestro-level abilities in classical music on the piano.  

His work, for the most part, is abstract so it seems to come more from the pure intent of his heart rather than from his intellect or mind. He never sat down with the intention of painting something in particular. It just flowed onto the paper. 

As Nancy Rosen has said, "Art works well here because LANGUAGE is not necessary." This was so important to Gregory.

Gregory often told Nancy that she gave him a “Whole New Life.” He always looked forward to what he called his “play-day” at Nancy’s studios. 

We often referred to her as “Gregory’s Art Angel.” 

In MUSIC, they say that the baton is like an extension of the director’s body. It flows the music from the director’s mind into her arm into the air around, to be picked up by the orchestra musicians.  

For Gregory, the oil stick became an extension of the painter’s arm. There was no need for the manipulation of tubes of oils, brushes, or palates. There was no need to mix colors. There was no need to clean up supplies. This made it easier for him.

Using oil sticks, colors are applied directly to paper, can be over-colored, or smoothed, blended, and diluted with terpenoid.  

If a stick dries, one can just cut off the end. If the stick becomes soiled with other colors, one can just wipe it off with the terpenoid.

 Nancy would demonstrate and Gregory would imitate. In this way, new learning was easier for him. 

Nancy would make a suggestion on how he could proceed and Gregory would follow through … or ignore her. Nancy was always good-natured with him, an excellent teacher.

A number of themes, of which Michael did the labeling, did seem to develop: landscapes,  diagonals, arches,   

stripes, circles, tunnels with white light at the end, feathers, and more.

When selecting color palates, with Nancy’s help, for that day’s work, he would have color preferences which he favored for weeks, then suddenly change saying,  “Yuck, I can’t do green anymore!”

Gregory was proud of his new abilities, his new hobby, his new art. Once when we were going to a friend’s birthday party he asked if he could take along some of his paintings to show people. I encouraged him saying, “You don’t want to take the attention away from the birthday boy, do you?” He understood.

Whenever people would visit us at home, he would take them by the hand to show them his new work which was hanging all over the condo, especially in the guest bathroom in which his paintings hung wall to wall, ceiling to floor and even in the rarely used shower stall! 

In addition to the oil sticks, he tried to work on collages but found cutting and collecting and keeping track of pieces overwhelming. One afternoon while sorting images to use for a drawing he had a panic attack. I was able to talk him down but that was the end of his collage work. 

At home, we tried and succeeded in working with Sumi ink. He studied calligraphy by trying to copy pictures from a book we purchased.

 He worked with colored pencils and Mandala designs. In the beginning, he did not like them and compared them to children coloring books. I suggested he be creative and alter the patterns by coloring outside the lines. This got him excited.

All of Gregory’s attempts at art fit very well within the confines of his progressing Dementia. Towards the end, at the risk of insulting his intelligence, we even tried colorful finger painting, which he didn’t seem to mind trying.  However, that did not work well since by that time his eye and hand coordination no longer existed.

He loved looking through books with art from the masters, studying them in detail for hours at a time. He continued to enjoy looking at his artwork which filled his room at Lieberman and we would often talk about the good times at Nancy’s studio. 

ART gave Gregory a sense of purpose and accomplishment and pride during a time when so many of his other abilities were disappearing.

I will be forever grateful to ART for the joy it brought Gregory during his lifetime and to helping him actively fill his time. I am forever grateful to Nancy for so gently being his friend, teacher, and mentor during the last five years of his life.  

TAKEN DURING PRESENTATION

Evanston Art Center Presents

Yesterday, at the Evanston Art Center, I made a presentation which included a talk on "Living Well With Alzheimer's," viewing the documentary "ALZHEIMER'S: A Love story," and addressing "The Importance of Art in Dementia Care." There is a 3 minute slide show following the text of the presentation.

We were joined by Grace Pelzer talking about Dance Movement and Amanda Ziemba talking about Music Therapy. 

A posthumous show of Gregory's paintings contained 50+ pieces. 

Refreshments were served. The event was attended by +/- 50 people. 

One Week From Tomorrow

https://www.evanstonartcenter.org/…/importance-art-dementia…

FREE ADMISSION

A Story: Living Well with Dementia/Alzheimer’s
A Documentary: Alzheimer’s: A Love Story
A Presentation: Art’s Importance in Dementia Care
A Panel Discussion
Question-Answer Session
Refreshments
An Art Show: Gregory Maire Posthumous Art Show/Sale

  HOLD THE DATE FOR THIS FREE EVENT  

Originally an E-Mail to My Wonderful Friend Barbara D

Live is good. Continuing to “organize” the condo bit by bit. A little compulsive but “control those things you can control!” Found some doors and drawers on Craig’s list for cabinets in my closet which are no longer made. Had a road trip to pick them up in West Bend, Wisconsin. Went with Ken, one of Gregory’s companions with whom I continue to friend and feel family towards. He finished his MA in Psychology and now had a therapist job in Chicago. We get together for dinner, movies, and other adventures every two to four weeks. His father died recently and I think my mentorship has served both the kid and me as well.

Am making a presentation to the 34th Annual Alzheimer’s Disease Association International at the end of July. They are out of UK, first started 34 years ago actually here in Chicago. Their annual meetings travel the world and they are back here. I submitted a proposal and was accepted to be one of their break out session presenters on “Living Well with Alzheimer’s.”

I will also get the chance to visit in person with new friends I have made on Facebook with Dementia/ Alzheimer’s interests. They will be coming here from Austrailia, New Zealand, England, Canada, and Nigeria. I’ll be staying at the Marriott Marquis, an elegant hotel attached to McCormick Place where the conference is being held. Instead of driving back and forth each day, I’ll be on site for the four days of the conference.

Will have an article in Teepa Snow’s PATIENT ALZHEIMER’S CARE free online journal which has a subscribership of 20,000 readers. I’ll post about it. Should appear around July 17. Will be interesting to see what kind of responses/reactions I’ll get. Teepa Snow, love that name, is a world wide caregiver consultant who not only is GREAT and one of the most compassionate people I know, but has build a large organization supporting caregivers around the world. The article will also have a link to my books of poetry and the documentary.

I produced a “one man show” called "ALZHEIMER’S: A Lost Story" for a local LGBTQ theater in town. Sold 30 tickets (first time I was the star of the show not a presenter.) It was well received by an engaged audience. 30 minute presentation followed by the documentary followed by Q&A followed by wine and cheese fellowship in the lobby.

Am planning a presentation in Evanston at the Evanston Art Center in their new home on Central Street with documentary and comments on “The making of a documentary” and “The importance of art for people with Dementia/Alzheimer’s followed by a panel discussion by people in the art field. Since the center is sponsoring it, they want a bent towards the arts and I can do that. During the Q&A issues of living well with Alzheimer’s are bound to come up. 

Finally after our annual July 4 immediate world party, a visit from my favorite niece, and a visit from a very good friend who moved recently to Portland,  I will be in NYC to see the 35th Year  Reunion Concert of “Pump Boys and Dinettes.” Gregory’s favorite college room mate who was one of the writers and performers in the musical when it had a successful run on Broaday. His son was instrumental in creating the documenary.

Since I’ll be in NYC I am going to see the revival of “Boys in the Band,” and “Dear Evan Hanson” and “The Band Visits” and the two part play “Harry Potter and the Cursed Stone.” The presentation for 34th ADI is a few days after I return from NYC.

Finally, a variation of the “Getting Older” essay I shared with you will be in the Chicago Area Gay newspaper Windy City Times as my fourth guest column.

Yes I am doing well and am keeping busy. How did I ever have time to work?