Thursday, June 22, 2017

Different Intensities of Knowing Gregory is Dead

This post was motivated by today's work on editing my memoirs, through my blog posts. I arrived at October 4, 2015 and today's editing dealt with his death. Of course I cried as I worked through to October 15 and then stopped for breakfast.

An aside is that as I was editing the memoirs through November and December, I was looking for evidence of Gregory's failing or changes in him that might have foretold of his passing. But there were none.

I find that kind of amazing because in thinking back, I think I saw some changes in energy, availability, his taking more time to recognize my arrival, more time spent napping, and difficulties swallowing at mealtime but I never wrote about them.

Back to the topic of the post. Knowing Gregory is dead takes many forms. Not necessarily in order of importance:

Todays was seeing his name associated with  "Today my love died."

Reading his obituary when it appeared in the Tribune, the Sun Times, and the Windy City TImes (Gay newspaper.)

Seeing the death certificate.

Filling out and signing all the paperwork for his cremation.

Canceling various accounts in his name.

Picturing him in his bed in his room at Lieberman and knowing that the life had left his body.

Dreaming about him, waking up, and remembering that he is dead.

Admiring the plaque on the memorial wall outside the Synagogue Room at Lieberman.

Looking at his portrait on the shelf next to his remains and flashing back to arriving at his room at Lieberman on the day he died.

Hearing someone tell of his death as well as me telling someone of his death.

Rewatching the documentary: ALZHEIMER'S: A Love Story.

Talking about our journey with Alzheimer's at various presentations I have made and getting to the part where after being in a coma for three days, he gave me one last kiss before he died.

Knowing that he was going to die but getting the call from Manny.

Having been on the Alzheimer's path for so long, and changing myself as Gregory changed, I knew intellectually but refused to know emotionally that he would ever really die.

Celebrating without him, the various holidays like Valentine's Day (the most difficult it turns out,) Christmas, Halloween, Birthdays, Anniversaries.

With great love comes great grief, they go hand in hand. But it does get easier and I have done a good job learning to live without Gregory's physicality but still having him be a large part of my every day life!






In Honor of Gay Pride

Wednesday, June 21, 2017

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   


Wednesday, June 14, 2017

Alzheimer's Patients Respond to Abraham-Hicks


I have been following Abraham-Hicks for many years now thanks to my nephew Mark Jr. Listening to this Abraham-Hicks talk about Dementia Alzheimer's has put a whole new perspective on the disease.

For more information on Abraham-Hicks: http://www.abraham-hicks.com/lawofattractionsource/index.php

Why Would Someone Choose Alzheimer's?




I have been following Abraham-Hicks for many years now thanks to my nephew Mark Jr. Listening to this Abraham-Hicks talk about Dementia Alzheimer's has put a whole new perspective on the disease.

For more information on Abraham-Hicks: http://www.abraham-hicks.com/lawofattractionsource/index.php

Alzheimer's: A More Common Exit Point


I have been following Abraham-Hicks for many years now thanks to my nephew Mark Jr. Listening to this Abraham-Hicks talk about Dementia Alzheimer's has put a whole new perspective on the disease.

For more information on Abraham-Hicks: http://www.abraham-hicks.com/lawofattractionsource/index.php

Alzheimer's is a Tool to Help One Transition from Physical to Non-Physical


Oh My God. This would have put an interesting spin on my dealing with Gregory as we worked his way through Alzheimer's Disease. Many of the suggestions did dawn on me and were helpful. Amazing to hear this take from Abraham Hicks, to whom I have been listening over many years but never about Dementia/Alzheimer's.

For more information on Abraham-Hicks: http://www.abraham-hicks.com/lawofattractionsource/index.php

Saturday, June 10, 2017

Honest

I usually do not share the results of "analysis" or "tests" on Facebook, but this one turned out well!

Michael, the word that describes you perfectly is HONEST!

Your life is too interesting to be defined in words but this one word suits you the most and you couldn't agree more. You have a great personality and many other beautiful qualities. Among other things your are Reliable and Kind. 

Your friends Jerome and Jennifer are also in awe of you and your amazing qualities. 

You dance every chance you get. Whether that's through meadows of wildflowers or nightclubs. It makes no difference to you. Always seen with a smile on your face, you transform every gray day into a colorful adventure. Contagious and impulsive, your presence is always a cause of joy!

Share this result with all your friends and show them the one word that describes you the best!




Friday, June 9, 2017

Anne Lamott: The Truths of Life

If you haven't, read this woman's work. She is sacred and sacrilegious. Take the time to listen to this TED Talk.

Thursday, June 8, 2017

The Roof or the Light

This poem was taken from Chasers of the Light: Poems from the typewriter series. Tyler Knott Gregson. 2014. It could be an apt description of Gregory and my relationship through the Alzheimer's Journey.

I do not know if I am the roof, worn and rusted and broken in more places than I am whole, and you are the light, shining through and making those gaps seem beautiful...

or, if I am the light, and you are the roof that is too scared to toss aside the shingles, cast away the nails, and bask in my warmth until you forget you were ever broken at all.

I do not know, and I do not know if I ever will.


Out of the Blue

How is this from out of the blue from a stranger: 

“Hi, Michael. I just stumbled upon the documentary via Comcast Xfinity. 

I'm sure you get emails such as this one daily, but I have to state the obvious: You are a man among men. Your dedication to Greg and ability to find joy and contentment amid the cruelty of that awful disease is a model for us all. 

Thank you for allowing your story to be told. 


Steve Jones

Wednesday, June 7, 2017

Artificial Intelligence and Suffering

AI. Artificial Intelligence. Will computers ever be able to think for themselves? Would more intelligent machines be a benefit or a disaster to humanity? I was listening to a BBC broadcast in the car yesterday and the conversation was very interesting.

The conversation also talked about how much computers help us, how intelligent they can be doing things in seconds that would take a human mind months or years to do. Our cars, HVAC, cell phones, refrigerators, washers, dryers, irons, and many more have onboard computers assisting them in doing their jobs.

Pople fear that computers will take jobs away from people (has been happening for a long time,) and more importantly that we will lose control over computers and that they will control us without our being able to monitor, stop, or alter them.

A question came up which blew my mind, with an answer that astounded me, especially in relationship to my recent studies in Buddhism.  "When will computers really be able to think like a person? When will we not be able to tell a human being from a computer machine?"

The answer was stated simply, "When the computer is able to suffer."

This reflects the essential understandings of human life as professed by Buddhists. Human beings want permanence. We are uncomfortable with things changing. We want to be happy, to be safe, to be successful, etc. And we want these conditions to exist forever.

We cannot fathom dying as the ultimate measure of impermanence and human beings avoid and fear the topic of death at most costs. But die we will whether we face it or not. Things around us, including us, are constantly changing. We are not the same people we were when we woke up this morning; cellularly, emotionally, experientially.

This conflict between wanting permanence and accepting that it does and cannot exist, caused us to spend most of our life suffering. (Fear, worry, anxiety, avoidance, etc.) So the idea that computers, at least as we know them today, will always be different from a human because of the human's ability to suffer. The computer might lose a chess game against a human and be programmed to say, "Oh I am so sad, I lost the game!" But is the computer really sad and can it really suffer?

Time will tell if only because of the constante change going on around us at all times, who know where Artificial Intelligence will take us?

Beyond the Grave

I chose the title of this post with tongue in cheek. But read on and you will see.

Gregory's remains live in his Grandma Carrie's antique sewing box on the bookcase shelf in my bedroom, on the side of the bed which is Gregory's.


Periodically I rearrange the shelf, taking away some adding others. Currently, the shelf if much simpler with the box in the middle, the photograph of Gregory to the left, a photo collage of Gregory growing up to the right.

In front of each frame is a small wooden tray, one holding some of Gregory's favorite dark chocolate Godiva candy and the other holding three felted hearts and one red stone heart. A small flowering plant sits in a terra-cotta pot. A battery-run flickering candle serves a 24 hour vigil.

Two nights ago as I was dozing off, a crash woke me to sitting upright. I flicked on the light, knowing that a cat had gotten into trouble and sure enough, Emma has pushed the stone heart off Gregory's shelf onto the floor. I bawled her out saying, "Bad cat! You know better!" 

Then I laughed to myself saying, "If Gregory's spirit had pushed the heart onto the floor I wouldn't have been so angry, would I have? I imagine that a soul in the spirit world would have to exert a really large amount of energy to move something in this world so I discounted Gregory's involvement and credited Emma.

Last night, as I was once more dozing off, a crash woke me again to the upright position. I flicked on the light, jumped out of bed and crossed over to Gregory's shelf. Sure enough one of the wooden trays with its felted hearts had crashed to the floor. And there sat Emma looking guilty. Again "Bad cat! You know better!" Again I laughed at wondering if maybe Gregory had pushed the tray to the floor.

Let me add a caveat. Gigi is the pusher, not Emma. But Gigi respects Gregory's shelf and while she visits it almost every night before bedtime, she never pushes or plays with anything on the shelf. She might smell it, or look very closely at it, but never pushes or plays. And Emma generally is not known for her "pushing."

So it occurred to me, that while it would take a great amount of spirit energy to push something to the floor in this world, how much energy would it take for Gregory's spirit to convince Emma that she should push the heart, then push the tray, then sit there innocently? So maybe Gregory's spirit was involved after all!







Saturday, June 3, 2017

Happiness

I have posted this previously, it still sings to me as applying to both Gregory and me:




The MTE EdFUND Second Annual Luncheon


Whether you were able to support the MTE EdFUND in memory of Gregory Maire with a monetary donation or with your well wishes, I wanted to thank you and update you on the successful Second Annual Luncheon. Looking forward to your joining us in May of 2018!
Fondly,
Michael Horvich

Thank you for making our 2nd Annual "More Than Ever" Education Luncheon a Success!

We raised over $44,000 for scholarships!

With your support, La Casa Norte is able to continue raising awareness and create opportunities for youth to continue on a path of educational success.

A special thank you to this year's honoree, North Shore Exchange and keynote speaker, Carmita Semaan, as well as "More Than Ever" Fund Co-Founder, Michael Horvich.

On behalf of everyone at La Casa Norte, we thank you for your partnership and for investing in the future of homeless college students.

Click here if you were unable to attend and still want to support us:

Click here to view more photos from the Luncheon:

Thank You to Our 2017 Luncheon Sponsors: North Shore Exchange, The Maire & Horvich Families, Vivid Art Gallery, First Bank & Trust of Evanston, Surge Institute, Car Outlet, and Ernst & Young.

Please note our temporary location!
2845 W. McLean Avenue | Chicago, IL 60647
P: 773-276-4900 | www.lacasanorte.org

La Casa Norte's mission is to serve youth and families confronting homelessness. We provide access to stable housing and deliver comprehensive services that act as a catalyst to transform lives and communities.

Friday, June 2, 2017

The Good and the Bad of Dementia

My friend Kate, whom you have met previously a number of times, recently posted a look at the difficulties of living with Dementia as well as the good parts:
CLICK HERE FOR KATE'S BLOG. (Opens in a new window)

This is my reply to her post:
Thanks, Kate. The metaphors of a "Gravitron" and a "Dementor" are painful but well placed. Richard Taylor's list really causes those of us who are "Non-Dementia-ed" to be more understanding, patient, accepting, supportive, etc and it also makes us more loving if only because of being able to better understand what the "Dementia-ed" are going through.

You say for you "I think it boils down to a few constantly recurring feelings – confusion – frustration – humiliation – embarrassment – loneliness – isolation – anger or irritation (which can lead to denial) – a deep sadness – and last but not least, worry, because I am constantly faced with an ever-changing playing field, never knowing what function is going to become impaired or lost tomorrow."

I know all of those and experienced them with Gregory, we both felt most of them, and I respect that these are your feelings, but if I may please say ... humiliation and embarrassment should not be allowed on your list! The changes that cause them are not your fault, not in your control, and I would guess that allowing people to see your "padding" helps them to love you all the more!

For example, I know how "humiliated and embarrassed" Gregory could have been at having to pee and shit himself when he could no longer get to the bathroom on time, even with help; but there was no cause because for him to feel bad as it just was, so we cleaned up, and kept on keeping on. Anyone who would have made him feel "less than" would have INSTANTLY been excluded from our life!

Other items in your list can be softened with loving, caring people in your life; like confusion and frustration easy by leaning on a friend to help or on one's "BUB." Loneliness doesn't have to take the front when those you love continue to be there for you no matter what. (Literally FUCK the others!) Sadness, yes ... but also lots of joy and gifts! Anger and irritation can help get difficult emotions under control rather than leading to denial. Accepting the changes and calling them out for what they are, increases acceptance. Who in their "right mind" would not be angry!

Finally, worry! Ah yes, WORRY! The great destroyer of happiness and sleep! The sage advice must be remembered, "Do not worry over those things you cannot change." A waste of time! So true. But I also found that "working at not worrying" was also a waste of time and in effect was a different form of worrying! Between the time we received Gregory's diagnosis and his death, there were so many things we worred about and or "worked at not worrying about" THAT NEVER EVEN CAME CLOSE TO HAPPENING! As we saw the first few worries skipped over, we began to accept most changes more easily.

For me as lead part of the caregiver team, the list of difficulties would probably boil down to one; the feeling of helplessness at making everything OK for Gregory (and for you for that matter, or anyone with Dementia!) When Gregory was happy and content, so was I. When he was overwhelmed emotionally, so was I. As he changed, so did I and this way both of us felt that all was OK. And it was. If I had to tally the difficulties, hard times, sorrow, sadness, and tears from the gifts, the gifts, joy, happines, and laughter would win out!

As I see it, you have met, my dear dear wonderful Kate, your mission multi-fold times with the so many people your life has touched and which your brave words of wisdom read by so many have helped. And your success must it not be tens of thousands and maybe more!

War & Peace by The Floating Opera Company


The Floating Opera Company opened its 2017/18 season with "War and Peace," a multi-media production in four parts that tells the narrative of American soldiers leaving for war and returning to a world they no longer understand. The program took place at the Lincoln Park Presbyterian Church on Saturday, May 27 at 7:30 PM, and The Chicago Temple over Memorial Day weekend: Sunday, May 28 at 2:30 PM and Monday, May 29 at 7:30 PM.
"War and Peace" honors the centenary of the United States’ entry into the Great War on April 6, 1917. The production, conceptualized by Floating Opera’s Artistic Director Daniel Grambow, is a composite opera comprised of important works from wartime eras by Francis Poulenc, Claude Debussy, Irving Berlin, and Spike Jones, and highlights “forgotten” composers, such as Ernest Farrar, Patrick Hadley, and Pierre Vellones. Projections, sound design, and animation enhance the experience.
Terry Marc Henderson II conducted and Daniel Grambow directed the Floating Opera Ensemble, comprised of Chicago-based vocalists and instrumentalists. There was pre-concert entertainment starting at 2 PM and 7 PM, respectively, where opera goers can immerse themselves in the world of pre-war America. The concessions area featured items which were available to WWI veterans: Cracker Jacks, Life Savers, Tootsie Rolls, Chocolate Chip Cookies, Hershey Bars, Twizzlers, etc.
A portion of proceeds were donated to the Chicago Temple and Veterans Association. This program will also be presented as part of Lincoln Park Presbyterian Church’s spring showcase on Saturday, May 27 at 7:30 PM. Tickets may be purchased at the door.)











Joy

This is how I try to live my life. Thanks to photographer friend Jane Alt for bringing it to my attention and to Archbishop Desmond Tutu for having said it!

Thursday, May 25, 2017

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. 
😃

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