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.