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.

Meeting of the Minds Dementia Conference 2019

(The opening session just filling up to begin at 8:45.)

What an experience! To be invited to one of the most prestigious Dementia/Alzheimer’s conferences in the United States, put on by Minnesota and North Dakota Alzheimer’s Association in conjunction with the MAYO Clinic of Rochester, Mn.

Approximately 1200 people attended the one day conference which included two major sessions (one opening welcome session and a closing one on current research) and three-hour long break out sessions.

The conference's tag line was "Meeting of the Minds and Changing Minds" and they did just that. Many of the sessions and panels included people diagnosed with Dementia as well as caregiver partners and experts in the field.

Not only were the sessions hopeful in face of the difficulties of the disease, but they were uplifting and promising for a better future for people living with Dementia. Some of that "better"  had to do with research studies and the progress in understanding the disease and its symptoms but much of it had to do with changes in attitude, ways of looking at the disease and the "disabilities" it brings and helping to make lives more productive and involved.

I had the honor of being one of the conference's opening keynote speakers with Dale (who is living with Dementia,) and Sandy (whose husband just died after living with Alzheimer’s Disease for three years.) Angela Lunde of the MAYO Clinic spoke as did Susan Spaulding, CEO of the MN/ND Alzheimer's Association; both may I add, eloquently in helping to set the purpose of Meeting of the Minds which was "Changing Minds."

My keynote presentation (like most of my Dementia projects) was titled: “ALZHEIMER’S: A Love Story” and it talked about Gregory and my walking the Dementia Path for 12 years while living as well as possible during that time. 

We did not “suffer” with Alzheimer’s, we lived well! Gregory was not a “victim” of Alzheimer’s, he was a HERO! There as more laughter than tears and more joy than sorrow. We did a good job of riding the unexpected twists and turns of the roller coaster called Dementia.

My break out session (attended by approximately 100 people) was titled: Dimensions of Love and Grief and Dementia.” Besides sharing some of my personal experience in dealing with Long Term Grief, Anticipatory Grief, and what I call “End Point Grief; I discussed some ways to help ease the grief as well as some new ways to think about grief and its expression.

The text of both presentations can be seen on my website: www.horvich.com

To end this post, I might share that I felt that my message was well received by those in attendance at my sessions. As I spoke, I could see quite a few of them dabbing their eyes with tissues. For the rest of the day, many people came up to me to express their appreciation, how my comments touched them, how meaningful my sharing was, how brave I was to share so openly my experiences, etc.

I was able to give (in a nurturing way) to others and I, in turn, received: Love, Thanks, Appreciation, Gratitude, Hugs, Tears, Pats on the Back, Gratefulness, Feelings of Importance, Compliments, Kudos, Accolades and even one invitation back to the participants home for a cup of coffee and to meet his wife who is living with Dementia.

I also received many new insights to living with Dementia, the work going on in the field of Dementia, and to the current research and changes in thinking about living with and potential cures for Dementia.

Senior Voices

Approximately 20 Seniors attended today's meeting of "Senior Voices" at the LGBTQ Center on Halsted where I presented "ALZHEIMER'S: A Love Story." We viewed a quick slideshow of Gregory and me "growing up," I made a 15-minute presentation about "Living Well with Alzheimer's," we watched the documentary "ALZHEIMER'S: A Love Story," and there was "Comment/Question/Answer" time afterward. The "thank you's" and mentions of my love for and dedication to Gregory were heartfelt and people also felt comfortable enough to share their "Alzheimer's" and caring for others stories. It felt good to be there!

Pritzker School of Medicine Presentation

Yesterday I spoke with a group of 20 medical students at an evening dinner session. My presentation "An Intimate Look at Alzheimer's" took 30 minutes and was followed by the award-winning documentary "Alzheimer's: A Love Story."

The students' comments were thoughtful, insightful, and caring, I felt good about sharing Gregory and my story with the hopes that having a personal view of the disease would help them in the future when dealing with similar issues in their practice.

One of the students sent this e-mail after the presentation:

Hello Mr. Horvich,

This is Pari, from the Geriatrics Interest Group - Emily and I just wanted to let you know how very much we appreciate your taking the time to come to Pritzker this evening. It was a privilege to get a glimpse of your and Mr. Maire's journey with Alzheimer's, and the mix of serious and humorous elements in the talk struck just the right note. I know that several of us - myself included - were moved to tears at different points, and we are so grateful for your generosity in sharing this intensely personal story with us. Presentations like yours will help us to become more sensitive, compassionate physicians; this reminder of the importance of personal stories and remaining attuned to patients' humanity was a uniquely fitting way to close our first year of medical school. Again, thank you, and best wishes for a restful summer--

Emily and Pari   

ALZHEIMER'S: A Love Story - Presentation at The Residences of Sherman Plaza

Approximately 25 residents of my condo plus some Evanston friends attended the event sponsored by the condo social committee in the community room. 

I made some comments followed by our watching the documentary and ending with a Q&A. A sweet table with mini-brownie bites, mini-coffee cake bites, and mini-cup cakes was served. 

First, some photographs taken by Jake Bloom, followed by the text of my presentation.

AN EVENING WITH

MICHAEL HORVICH

Sherman Plaza Social Committee Presentation

at 

The Residences of Sherman Plaza

Tuesday

May 23, 2017 

7:00 pm

😃

I am pleased to be here with you today and want to thank Marilyn Goldman for the idea, and Sherman Plaza Social Committee for making this gathering possible. 

Thank you, ALL for joining us. I see some faces out there that I recognize and some that are new.

Before we view the documentary, I would like to tell you a little about myself and Gregory, say a very little about the disease called Dementia/Alzheimer’s, share a few of my poems, and explain how the documentary came to be. 

A slide show will take 3 minutes, my comments will take approximately 10 minutes, the poetry 10 minutes, and the documentary 15 minutes.

Please, help yourself to refreshments at any time during the presentation. 

Following the documentary we will have a “Q&A” I will attempt to address any questions you may have.

😃 

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.

So if I do get choked up, I will pause, take a few deep breaths, and be right back. Thank you for your understanding. 

😃 

Gregory, my husband of over 41 years, who I met in the late 70’s … and lived within a committed, same-sex relationship before it was fashionable to talk about such things publicly … was diagnosed with DEMENTIA, most likely ALZHEIMER’S, in the 29th year of our relationship. 

We walked the Dementia/Alzheimer’s path together for 12 years … He was NOT a victim of Alzheimer’s … but rather a HERO. 

He lived as well as possible as the disease progressed and I was able to keep him safe and to support him by helping him to be free of worries, responsibilities, and fears. 

I was able to help him compensate for his diminishing abilities while always trying to make sure that the respect and communication which defined our relationship never faltered.

I made sure that our daily life was full and rich and meaningful. Our life was filled with much laughter as well as many tears, joy as well as sorrow. And above all, it was filled with LOVE. 

The times were not easy, but we persevered. 

Admittedly, it is easier to talk about our adventure in looking back … when compared to the sometimes HELL it was to actually living with Dementia/Alzheimer’s.

Alzheimer’s is not just about failing memory, as some people believe, and as you probably know. 

It also affects the thinking process, bodily functioning, and day to day activities.

For example: Think about the skills and steps necessary in taking a drink of water. While this is automatic for most people, it is NOT automatic for a person with advanced Dementia!

First, you have to identify that you are thirsty. 

Then you have to understand that taking a drink of water will help satisfy that need.

You find a glass and fill it with water, not overfill it, and pick up the glass of being careful not to knock it over. 

You lift it in your hand, but not so strongly that you break it and cut yourself. You lift it at the correct angle so as not to spill the water.

You aim it towards your mouth, get the end of the glass to your lips without hurting yourself, since you can’t really see your lips, and allow just enough water to fill your mouth without letting it run down your chin.

You swallow the water as you are lowering the glass back towards the table at the proper angle, so it doesn’t fall over or spill. 

You finish swallowing the water carefully so it does not go down “the wrong pipe” causing you to choke. 

If it does, you need to remember how to cough with enough strength, to be able to get the water out of your lungs. 

If you swallow incorrectly too often … and get too much water in your lungs … which causes aspiration … which can lead to pneumonia … and eventually could lead to death …

… all this for the want of being thirsty and taking a drink of water.

This is just ONE example of the breakdown of abilities; cognitive as well as physical, mental, physiological, psychological, social, emotional etc, which occurs with dementia … and the thousands of ways in which the disease expresses itself. Usually slightly different for each person affected!

😃

Gregory lived at home here in our condo for 10+ of his years with dementia.

The last 18 months brought him to the point of needing such intense care, that short of turning the condo into a hospital ward, with 24/7 medical support staff, I was no longer able to provide for all of his needs while at home.

We were very fortunate to find and to afford, close to home, the Lieberman Center for Memory Care. He began there on private pay which eventually transitioned into government supported Medicaid. 

Now, I was no longer fully responsible for Gregory 24/7 and was grateful to have a team of people to support his medical, living, and safety needs.

I took an active role and the medical staff included me on the team for all decisions and were always responsive to my inquiries and suggestions and requests to be educated about the best health practices available to us. I always had the final say about Gregory’s care!

Gregory enjoyed most of the activities and “hub-bub” of the place. Being with other people and developing a new sense of community helped him greatly as well. He made friends and he never once asked, “What am I doing here?” 

I continued to provide much of his social/emotional support by spending time with him every day. 

The center provided excellent medical care but even though the ratio of caregiver to a resident is higher than that required by the State of Illinois, there is never enough time to really give residents enough one-on-one loving attention.

He always knew who I was and was always happy to see me and we developed new ways of communicating. I would tap my forehead on his and he would reply, “BOINK!” We would both giggle.

For the most part, he was happy and content and peaceful in his new life. When problems rarely surfaced at the care center, they were easily taken care of.

By now Gregory no longer had use of language and was not able to do much for himself. 

I hired a day man to be with Gregory from 11:00 AM - 7:00 PM every day. This gave me piece of mind during the time of day when I was not able to be with him.

Manny provided Gregory with companionship, help with meals, made sure the aides knew when Gregory needed to be cleaned up after messing himself. 

He ran the DVD, TV, and music for Gregory. He helped with napping, exercising and stretching.Manny kept him hydrated and plied with treats: cookies, pretzels, chocolates, and donuts, all the things Gregory loved. 

Manny helped Gregory get to building functions, read aloud to him, looked through picture books with him, and spent a lot of time outdoors during good weather.

Gregory lived as well as possible with Alzheimer’s … we refused to let the diagnosis be a death sentence!

😃 

Hospice entered the picture during the last year of Gregory’s life. Death was not imminent but when you can prove continuing need and continuing decline, Medicare will pay for Hospice.

Hospice was so very supportive to Gregory. I am grateful to this day for the medical help they provided for him but also for their helping me understand the nature of the Dementia’s trajectory and in the end, the process of dying. 

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

It was actually a surprise, first because in some ways, having been on the Dementia/Alzheimer’s path for over twelve years, I probably believed that Gregory would NEVER die. 

Secondly, he had been relatively healthy and the PREVIOUS winter had gotten through three major bouts of coughs and colds, most likely Pneumonia, on his own. 

It took him 3 days to finalize his preparations to die. I did not feel the need to keep an all-night vigil as the nurses were very much on top of being there for Gregory and I felt that he needed his privacy. My being there by his side would complicate his passing both for both of us.

Before I left on Saturday night, I once again told him to take care of himself, and to not worry about me when he was ready to leave us. I would miss him but I would be OK!

He was able to open his eyes briefly and give me one last kiss, after having been in a coma for those three days. I considered this a wonderful miracle! 

The next day, on October 4, 2015, he peacefully began his next adventure on the other side of life as we know it.

😃

I will not go into detail about the grief I felt; and trying to come to grips with the finality of death,  the meaning of life, and evaluating our 12 years of living with Dementia, some of which I handled well and other parts which I did not.

Suffice it to say that Gregory and my love for each other was so strong that it helped me through the journey and the grieving. 

Great love creates great grief. They go hand in hand. It does get easier over time but grief rears its emotional head now and then when least expected.

I am able to sit with my emotions, ask them what lessons they have brought me, and slowly I begin to feel better and am able to go on with my day. Sometimes I thank them, say “Not now please!” and they leave me in peace until I am ready to deal with them.

Gregory will always be with me … true love never ends!

😃 

Whether you are the one who receives the diagnosis of Dementia/Alzheimer’s, or the one who loves the person who has … the way in which dementia progresses and expresses itself over time can be one of the most challenging, painful, frightening, confusing, and frustrating experiences one will ever encounter. 

One will not always be at their best … but if done well … and with love … it can also be a time of renewed love, creativity, and many unexpected gifts. 

I have said that Gregory was not a VICTIM of Alzheimer’s but rather a HERO! Recently, in looking back, I have begun to be able to say that Gregory … AND  I … were not victims of Alzheimer’s … we were BOTH … HEROS!

😃

(POETRY)

How can I describe what it was like to live with someone for twelve years who has Alzheimer's Disease, or any major dementia for that matter? 

Over time, I have tried to describe as well as process for myself, what I went through on a daily if not hourly basis, 24/7/365.

I have used prose, poetry, memoirs, metaphor, anecdote, description, humor, and tears to try to share what it is like. 

I will try to share my experience with you through five pieces of poetry I have written and then we will watch a documentary that was made half a year before Gregory died on October 4, 2015.

😃

First Alzheimer’s Disease as it relates to the theater. It is called:

A Play Told in a Series of Poems

I have written many pieces of poetry, 

Chronicling the path traveled with Gregory, 

My life partner of over forty-one years,

Diagnosed with Alzheimer's Disease, 

When he was fifty-five years old.

For a next project, wouldn't it be interesting,

To write a serious drama for the stage,

In which the audience would experience

What a person with Alzheimer’s goes through 

And what those who love him endure?

It wouldn't be hard for me to write the play,

I have so much material on which to draw. 

The question is, however, 

who would want to pay the ticket price and attend an evening of theater to watch it? 

Who would want to sit through some ninety minutes, with one intermission of heaviness, sadness, frustration, confusion, depression, tears and at times desperation?

Even if laced with love, compassion, insight, joy, humor, and laughter,?

Who would want to pay?

Who would want to pay?

😃

Next as Alzheimer’s Disease relates to music and dance with a poem called: 

The Dance With Normalcy

Living with and loving someone who has     

     Alzheimer’s

Is like orchestrating an improvisational dance 

with normalcy.

No music, no planned steps, no assigned leading 

partner.

Not being able to anticipate turns or circles, or dips or bends.

Defining and redefining normalcy by the 

moment … or not.

Normalcy for his dance, not mine being the key,

As we live in each other’s world, 

Neither one making sense to the other.

But at least we live … and at least we love.

And each day … we both die a little.

😃

Would I be insulting your intelligence to tell you that Ménage à trois is a French term which originally described a domestic arrangement, in which three people having sexual relations occupy the same household? 

The phrase literally translates as "household of three.” This poem is called:

Ménage á trios

Over twenty-nine years and their relationship was as strong as ever, 

Their love continuing to grow, change, and adjust to the times. 

Same-sex love was not fashionable when they first met in the 70’s.

It was known as the Love That Dares Not Speak Its Name. 

Most churches do not recognize nor bless their love, their union.

Slowly society has acknowledged it out loud but for the most part still in whispers.              

Each partner was very much unlike the other. 

He was tall and he was short. 

He was fair and he was dark. 

He was slender and he was bulky.            

He was a recovering Catholic. 

He was a cultural Jew.

He was calm, thoughtful, and orderly.

He was animated, impulsive, and random.

Often he described him as a “stick:” meaning hard, formed, and inflexible. 

In turn, he described him as a “sponge:” meaning soft, malleable, absorbing. 

Over time the stick became more sponge-like and the sponge became more stick-like.

One day, years later, uninvited and unannounced, unasked, a third partner joined the relationship. 

Alzheimer’s does not discriminate against same sex relationships, nor seek permission to join the party. 

So it became a ménage à trois. Three entities occupying the same household.

Now, he is becoming less, and he is having to become more. 

Now he has difficulty communicating, and he has to tell both of their stories.

Slowly while he has been becoming the back partner in this ménage à trios

And while he has been becoming the forward partner …

Alzheimer’s is becoming the dominant partner.

😃

Fourth, I have been told that it is a brave thing … for a caregiver to admit that:

His Illness Is All About Me!

I am his words

I am his memories

I listen to his emotions

I listen to his needs

I learn to accept less

I learn to go where he leads

I try not to expect too much

I try not to anticipate

I respond when I am asked

I respond … or sometimes I wait

I understand his situation

I understand his state

I leave the rest to who knows what

I leave the rest to fate

I know it’s up to me to change

I know he’s doing his best

I will do whatever I have to do

I will put myself to the test

I cry myself to sleep at night

I cry silently within my soul

I feel so very sad and alone

I feel such an empty, deep hole

I live from moment to moment

I live from day to day

I yearn for what used to be 

I yearn for yesterday

I promised to always love him

I promised until death do we part

I will hold him close while he knows me

I will hold him always in my heart

Now … I am his words

I am his memories 

😃

My final poem this evening is based on Gregory an my extensive travels when he was first diagnosed and during the early stages of the disease. It is called:

Intersections

We wander through the meadow, 

Sit on garden seats.

We walk in narrow country paths,

Traverse the city streets.

We linger in romantic cafes, 

Witnessing hand in hand.

We venture to places unknown,

Revisit those we had planned.

And, now, as we travel life together,

It is at rare intersections that we meet.

The words just don’t exist anymore,

But with memories and our love, we are replete.

😃

The documentary, ALZHEIMER’S: A Love Story, which you are about to see, follows Gregory and me for a week towards the end of his life. 

The documentary was done in March of 2015 by the son of Gregory’s college roommate and best friend. Gregory died seven months later.

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, California.

It has been screened at more than 80 film festivals locally, nationally, and internationally. It has been shown in France, South Africa, Italy, London, Madrid, Hong Kong, Mexico, Amsertdam, Bogota, Bulgaria, Australia, Ukraine, Germany, Estonia, the UK, Poland, and India.

It has won over 35 awards including two of  the most prestigious from the American Pavilion at 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 of 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 long term, catastrophic disease strikes.

After the documentary I will try to address any questions you may have. Now, lets watch. 

😃