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
Sherman Plaza Social Committee Presentation
The Residences of Sherman Plaza
May 23, 2017
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!
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
Is like orchestrating an improvisational dance
No music, no planned steps, no assigned leading
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:
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.