Showing posts with label Stories. Show all posts
Showing posts with label Stories. Show all posts

Saturday, December 22, 2018

The Ghosts of Christmas Past, Present, and Future Revisited


Why this titled post at this time? I do not know. Is it because of Christmas Past, Present, and Future? Is it because holidays make me think more about Gregory and how much I miss his daily physical presence? Is it because of thinking of all those who have "gone before?" Why am I thinking of and processing the ghosts and silence that death brings?

I am energetic, so I am told. My energy flows freely from me and out towards others, people I know and those I just pass on the street. I smile and nod at the beggar on the corner as he asks for spare change to buy some dinner. I guess I smile a lot, for strangers often smile back as we walk past each other. I always have something I can say to fellow acquaintances in my condo building as we get on and off the elevator. I easily engage with strangers when sitting at a table of ten at some function or another, even if I do not know the other nine.

My energy also flows into the keypad of my computer as these posts seem just to flow out of me. Editing always later but the ideas and organization usually are in place from the beginning!

There is energy in abundance as I arrange and rearrange my collections, which can be found all over the condo. I am told that even though there is a lot to look at, my home seems peaceful and organized. When asked, I usually have a story or two to tell about each item: its significance, where it came from, did I buy it or did someone give it to me, how long I have had it, why do I like it?



Each room, in many ways, is a wonderland and a museum, much like Michael's Museum: A Curious Collection of Tiny Treasures which has been a permanent exhibit at Chicago Children's Museum on Navy Pier since 2011.


My desk in the living room has a collection which lives in front of the computer and which grows until the space is completely filled, gets emptied into a plastic shoe box, only to grow again and again. Kiddingly I attribute this to the Collection Elves working secretly at night.









On the left side of my desk, various collections come and go. Currently, there are some miniature Christmas Trees approximately 12" tall with antique German glass ornaments. There is a 1940's black ROYAL typewriter with a letter to Santa inserted in the roller.



In the living room plants adorn the desk, the kitchen island, and the intersection of the front hall and living room.





Paintings by Aydin, friend and owner of Prarie Joe's Diner in Evanston; and photographs (some antique and some by other friends) are hung on the living room walls and above the desk. A collection of fake grass fills the window over the desk.





In the living room, two leaning ladder shelves made of recycled wood hold more books.



The kitchen features a backsplash running the width of the room, made of alternating 8"x 10" and 8½" x 10" glass front picture frames with enlarged photographs I have taken of "kitchen things," like appliances, the stove, a pie, and a cup filled with coffee. The top of the cabinets is filled with vintage 30's and 40's greenware pottery. There are approximately 150 pieces!



My master bathroom has an immense collection of little things from China, Japan, Thailand, Taiwan, etc. All things Asian.


The guest bathroom features my Gnome collection: all sizes, colors, shapes, and engaged in all types of activities. My favorite "shoots you the moon" as you wash your hands. Here you can also find several art pieces by my friend Jake; beautiful oil paintings mounted on miniature canvases of interesting rocks and stones with the stone "model" glued to the back of the piece.




The guest room is lined with paintings, mostly of people, by Gregory and friends. Many of my souvenirs from Mexico are also in the guest room.




The entry hall has my "Leaving Shrine" with sounding bowls, Buddhas, prayer wheels, items representing the four elements (fire, earth, wind, water.) On the bottom shelf of the shrine is my bowl collection including bowls of ceramic, wood, rock, aluminum, pewter, silver, clay, basket, and one made of stitched together buttons.



Also down the length of the front hall are black and white photographs, all in matching black frames of the same size. Lined up on top of each frame are four smaller frames, in matching black frames, of miniature paintings we have purchased on our travels over the years. There are a few larger framed photography by friends.


Two shelves of miniature Buddhas, 25+, finish out the entry hall.


My bedroom includes most of my library including a full wall of books and a recently added reading nook.




Most recently, across the top of the bookcases, the width of the room you will see some 30+ "hands." They consist of glove molds, display fixtures, palm reading hand maps, and ones of metal, plastic, ceramic, and wood. They come in all sizes and colors as they reach towards the heavens.


Gregory's shrine lives in the bedroom also on a bookcase shelf on the side of the room that used to be his. Each night, his cat Gigi visits the shrine before she settles in for the night. There is an 8 x 10 photograph of him in a black frame. Grandma Carrie's, Gregory's much-loved Grandmother, sewing box contains his remains and some momentoes and photographs of his life. There is a sounding bowl all his own which I ring when I sit down to have a chat with him.



There is a collection of 25+ hearts of all sizes and types. There are a few bars of dark chocolate, which are his favorite. A Taiwanese wooden temple is on the self with a dozen miniature Buddhas surrounding the temple's porch. I have had a terrible time remembering to keep up with fresh flowers or miniature plants, so I have resorted to using some very tasteful artificial flowers in a beautiful vase. I say very tastefull because Gregory really hated fake :-)


• • •

So all of this brings me to the point of this post. Lately, I have been experiencing what it will be like when I am no longer here, alive, to put energy into those things I love, those things around me, those things I seem continuously to create. It is as if I am walking into the condo experiencing what it will be like for others when I am no longer on this physical plane and feel the silence, the stillness, the missing parts.

These feelings are not a foreboding or premonition of imminent death but rather, I believe, an overview look at my present place in life; past, present, and future; and my current state of being. It looks at the many "shrines" I create to life and to myself.

For the most part, my thoughts center around the fact that the story will be gone. For most people except those closest to me, the stories will be finished. There will be no more new collections, the existing ones will be dismantled, the coffee pot will no longer share the smell of freshly ground beans and the refrigerator will no longer keep the milk fresh.

The rooms will no longer entertain guests and will no longer cycle between clean and dirty, organized and disorganized, bright by day and lamped by night, nor reflect the seasons or holidays.

It is not that I am afraid of dying, it is not that I am so attached to the THINGS that I am sad or upset that I will no longer be able to PLAY with them. It is just that their essence, their souls, their energy will dissipate and eventually disappear, as I dissipate and disappear as well. 

Then my proverbial question of “What makes a Life?” will come into play. I will be remembered, I know. My name will be spoken, I know. Some of my stories will continue. Some of my things will sit on family and friend’s tables and shelves.

Most of the things will be enjoyed one way or another, whether by family or by strangers who purchased them in an antique shop, but they will no longer be alive or energetic as they are now and more sadly, for the most part, the STORIES will be gone. Except maybe this one and a few like it.

So what difference does a life make and the events and things which make up that life? Perhaps the memories left behind are what matter as well as being in the moment to enjoy the here and now which so fleetingly passes. When a waiter at a restaurant or a clerk at a shop asks me, "Do you have any questions?" I usually kiddingly reply, "What is the meaning of life?" 

For me, it is to LOVE and TO BE LOVED. That is enough. Let the things and the stories scatter, it was and is the LOVE that matters!



Wednesday, October 24, 2018

Whale Watching

This idea was taken from last night's dream. I awoke having "experienced" the situation comedy in my dream. This is the first time that I have been able to re-create a dream of this type in detail with a little added imagination after waking. 

Whale Watching
A Family Situation Comedy
The entire family lives in one, modest but large, four bedroom home in a small city just outside Chicago. The house is an older brick three stories. One bedroom is on the first level, the others on the second level and in the attic. Michael, the “Uncle” is visiting from New York City and camping out in the den. The parents live in a small “in-law’ apartment attached to the garage. The kitchen is large and there is a formal dining room.
The neighborhoods represent all racial and socio-economic level families with many mixed-race marriages. Strong LGBTQ presence. 
The small city consists of residential, business, and light factory and has a substantial downtown. There are brand name stores, privately owned shops, and restaurants which run from “chain” to very expensive. In the downtown area, there are hotels, a 16 screen theater, a legitimate theater, a library, a post office.
The public transportation is excellent and there is a commuter train. The police and fire protection are excellent. Crime is low but does exist. The school system is good and there are also a few private schools. It is home to a prestigious university and several smaller ones. Politics of most people in town is outspoken, Democratic.
• • •
Adolph Whales - Father - Has Early Stage Dementia/Alzheimer’s - 70
Adele Whales - Mother - 70 - Was an English Professor
Michael Whales - Brother - Gay -A retired teacher - 50
(Gregory Marie - Brother’s Husband - An architect. Now deceased, Alzheimer’s)
Pepper - Pet Collie

Bethany Whales/Branford - Sister - At Home Mother & successful writer - 45
Pete Branford - Sister’s Husband - Lawyer - 45
Go - Pet Poodle
Go Go II - Pet Poodle Puppy
Cindy Branford - Daughter - Divorced - 28
Barbara Delany - Daughter’s Wife - 28
Clarice Branford - Daughter - 12
Lindsey Branford - Daughter - 9

Pete Jr. Branford - Son - 20
Ginger - Older Pet Cat

Unusual, well-developed family dynamics. A very current and hip but at the same time old-fashioned, close-knit family that functions well. Each family member brings a unique perspective to the whole. All family members are outspoken with the exception of the two spouses who are somewhat overwhelmed by the family dynamics.

Monday, September 3, 2018

A Window Not a Mirror

"To stand up in front of people and bare your soul is a very difficult thing to do. But if you believe in your story, you must stand up proudly and speak clearly. Life is not a mirror but rather a window. You must keep the glass clean so you can see out and so that people can see in."

This is my version of a quote from the great opera star Dame Janet Baker, who celebrated her 85th birthday this week, and Joyce DiDonato

Sunday, July 29, 2018

33rd Alzheimer's Disease International Conference in Chicago

I will write more about the conference and my experience at a later date but wanted to share some photographs and the text of my presentation (which received a standing ovation from 150 attendees) on Saturday, July 28 at 4:00 pm.

The photo of Gregory and me was on the screen to my stage right as I made the 13-minute presentation. You may have read a similar version previously but this is the first time I have been able to get "the story" down to 13 minutes.

My notes on the presentation were printed on card stock in 24 point font to prompt me as I delivered it. I knew most of it by heart so was able to be face to face engaged with the audience. The BOLDFACE was to help make sure my emphasis was clear.

I prepared a bibliography hand out as well.

Room 196b

My fellow presenters. We each had 12 minutes.


In the printed conference program book

Photo of Gregory and me was on screen during my presentation

AN ALZHEIMER’S LOVE STORY
By Michael Horvich
PERSONAL 
Telling our stories is important. Whether the story is told by a person diagnosed with dementia or by a person who loves the person with the diagnosis, our stories will change the world.
My name is Michael and 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 get choked up, I will pause, take a few deep breaths, and be right back, probably before you even notice I have gone.
 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. 
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 … DIRECTLYINTENSELY. 
ABOUT MICHAEL
Let me tell you a little about me …I am an educator, have worked with children in regular education as well as children with special needs, was an administrator for a Talented and Gifted Education Programtaught Junior High Spanish, and taught a number of university-level education courses and seminars.
I have been retired for 20+ years but have 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 BA at Wesleyan University in Connecticut and received his Master’s Degree from Harvard University where he studied Architecture, with Phi Beta Kappa recognition. 
He ran his own high-end architecture and interior design firm and served as the architect of record for renovations at the Baha’i National Shrine in a suburb of Chicago, Wilmette, Il. 
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 DIAGNOSIS
Gregory and I walked the Dementia / Alzheimer’spath together for 12 years. 
He was NOTVICTIMof Alzheimer’s ... but rather a HERO.
I might add that we lived as well as possible with dementia, refusing to accept the diagnosis as a “DEATH SENTENCE.” 
I never referred to the diagnosis as HISbut always OURdiagnosis. 
We were relieved on receiving the diagnosis because now we had an idea of what we had been experiencing & and 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. 
As you know, Dementia /Alzheimer’s is not just a memory problem! It includes cognitive issues as well as physical, mental, physiological, psychological, social, emotional, medical, etc ... and is complicated by the many ways in which it expresses itself, usually different for each person affected! 
NOT A DEATH SENTENCE
The times were not easy, but we persevered and did a good job! I was able to keep him safe and to support him by helping him to be free of daily worries, responsibilities, and fears. 
I was able to help him compensate for his disappearing abilities while always trying to make sure that the respect and communication which had defined our relationship never faltered. 
MEDICAL ASPECTS
The DOCTORS were able to RULE OUTwhat was NOTgoing on, but being a PROGRESSIVEINCURABLEdisease, what were they REALLY able to do during those EARLYstages except confirm my existing observations?
They WERE able to prescribe drugs like ARICEPT and NAMENDA, which are purported to slow down the disease, but how does one measure … “SLOW DOWN” and against what baseline? 
NEW SENSE: FAMILY & HOME
Instead of spending time MEDICALIZINGour experience, I worked very hard at CREATING A NEW SENSE OF FAMILYandHOMEand RELATIONSHIPto fit Gregory’s changing needs.
For the most part he dealt with the disease in his usual CALM manner and at a certain point, the Alzheimer’s created a BUFFERwhich kept him from being fully aware of the changes through which he was going. 
 YES, there were times when he became depressed, sad, frustrated, and fearful but most of the time he was content and happy. The same YING AND YANGwas true for me!
Fortunately, I was retired and had all the time in the world for him … and for us.
 CAREGIVING TEAM
In the beginning, I REFUSED to refer to myself as Gregory’s CAREGIVER… out of RESPECT for not wanting to diminish him to the role of being my “PATIENT.” 
I remember thinking “If the disease would only stop progressing at this point I would be content.” 
PROGRESS
But PROGRESS it did … and the RESTING, level periods were shorter and the need to re-think and re-establish NORMALCYcontinued … sometimes on a daily basis … sometimes hourly.
Sometimes Gregory’s PERCEPTIONof … and INTERACTION with the world … was so confused and disoriented that I not only didn’t know how to SUPPORT him … but I didn’t know how to INTERPRET what he and/or I were experiencing.
 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. 
But we did not give up!
Family and friends were available but they had lives of their own and even though they tried, they couldn’t REALLY understand what I was going through.
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. Above all, it was filled with LOVETRUST.
I had all of our legal arrangements in order, and being a same-sex-couple, before marriage was legal in the United States, we also had to have all types of special “permissions” and “protections” in place.
We closed Gregory’s business and our time was now our own. Our love continued to grow. 
We enjoyed our condo and living in a very active Downtown Evanston, Illinois.  
We entertained, enjoyed family and friends, ate out, cooked at home, went to the 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. 
My ROLE in providing our life experiences INCREASEDmore and more over time.
We continued to be compassionate with each other, ourselves, and those around us. 
As the Dementia progressed and we were no longer able to discuss our experiences or difficult exchanges, I turned to my computer to write. 
 This helped me process my understandings, and emotions, keep family and friends up to date on our journey and share with others who might tune into the blog.
Check out my website, HORVICH.COM, for links to my Alzheimer’s BLOG, my writer’s BLOG, as well as my other projects.
You will also find a link to a 15-minute documentary, ALZHEIMER’S: A Love Story, about Gregory and me which was made towards the end of his life.
  It has been accepted to over 90film festivals worldwide and won over 35awards including two from the American Pavilion at the Cannes Film Festival. That’sHORVICH.COM.
LIEBERMAN CENTER
Gregory was at home for 10+ of his years living with dementia. Then Gregory’s 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 10 minutes from home. I could easily visit every day. 
I felt some GUILT at having to move Gregory to a memory care facility … but 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 hired a daycare worker to support Gregory’s physical, as well as social/emotional needs since nurse assistants in most care facilities do not have enough time to meet all the needs of all the residents. 
We were very fortunate to be able to afford the extra care for Gregory.
I played an active role in determining Gregory’s health care, the facility always respected my wishes as well as helping me to understand best practices. 
Admittedly, it is easier to talk about our journey IN LOOKING BACK… when compared to the overwhelming, seemingly impossible ordeal, and sometimes HELLit was to be living with and supporting Gregory through the Dementia /Alzheimer’s while MAINTAINING MY OWN SANITY. Keeping a positive outlook was not easy but always helpful!
HOSPICE
Hospice joined our team and worked hand in hand with the memory center for the last 9 months of Gregory’s life. 
I am GRATEFUL to this day for the medical help Hospice provided for Gregory but also for helping MEto understand the nature of Dementia’s trajectory and in the end, 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 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 LOVEmeans GREAT GRIEF. I will always grieve at some level the loss of the love of my life, but that love also 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 the most challenging, painful, frightening, confusing, and frustrating YETloving and liberating experience we have ever encountered.
We SUCCEDED in getting through it with DIGNITY. We were not always at our best ... but done with LOVE, KINDNESS, UNDERSTANDING, RESPECT and FORGIVENESS was a time of RENEWED LOVECREATIVITY, & many UNEXPECTED GIFTS. 
My goal in sharing Gregory’s and my story with you is to let you know, “You are not alone. It will be difficult but you can do this!”      
THANK YOU!
BIBLIOGRAPHY
34thAlzheimer’s Disease International Conference – Chicago – July 2018
Session: “Engaging people living with dementia and care partners”
July 28, 2018 – 4:00-5:30 pm – Room 196b
Michael A. Horvich - www.horvich.comm@horvich.com


ALZHEIMER’S: A Love Story References/Resources

 

                                                           
ADVANCED LIFE PLANNING AND DIRECTIVES
A “Peace of Mind Life” begins with planning ahead.

The Five Wishes
Worksheets including advance directives and planning
Created by “Aging with Dignity.”

http://www.goodendoflife.com
Good End of Life
Worksheets including 1) The Plan, 2) Advocates, 3) Hospital Readiness, 4) Caregiving guidelines, and 5) Last Words.

Advance Life Directives and Planning

http://www.amazon.com
Legal Guide for Lesbian and Gay Couples 2016(Updated often)
Excellent guidelines for Gay Couples and what needs to be in place at end of life.
                        
GENERAL SPIRITUAL
Living a loving, centered life helps prepare for anything which may occur.

How to Love. Thich Nhat Hanh. 2014.

The Four Agreements. Don Miguel Ruiz. 1997.

Attitudes of Gratitude. M.J. Ryan. 1999.

There’s A Spiritual Solution to Every Problem. Wayne W. Dyer. 2003.

Living Beautifully: With Uncertainty and Change. Pema Chodron. 2013.

DEMENTIA / ALZHEIMER’S
Each person experiences Dementia/Alzheimer’s in their own way but none-the-less a universality of experience exists.

What the Hell Happened to My Brain? Living Beyond Dementia. Kate Swaffer. 2016.

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. Nancy L. Mace & Peter V. Rabins. 2012.

Living Your Best with Early-Stage Alzheimer’s. Lisa Snyder, MSW, LCSW. 2010

Please Take Me Home Before Dark: One Family’s Journey With Alzheimer’s Disease. Billie J. Pate & Mary Pate Yarnell. 2006.

Into the Mist. Deborah Uetz with Dr. Anne Lindsay. 2005.

Alzheimer’s Early Stage. Daniel Kuhn, MSW. 2003

Learning to Speak Alzheimer’s. Robert N. Butler MD. 2003.

What If It’s Not Alzheimer’s? Lisa and Gary Radin. 2003.

GRIEF
While living with Dementia/Alzheimer’s there is a day to day loss grief, anticipatory grief, and end of life grief.

It’s OK that you’re NOT OK. Megan Devine. 2017.

Yoga for Grief and Loss: Poses, Meditation, Devotion, Self-Reflection, Selfless Acts, RitualKarla Helbert. 2015

Healing After Loss: Daily Meditations for Working Through Grief. Martha W. Hickman.1994.

Two pamphlets: Navigating GRIEF: A Beginners GuideANDAnticipatory Grief: A Guide to Dealing with Impending Loss. Other information also available at: www.whatsyourgrief.com.

MORE ABOUT MICHAEL – CHECK OUT HIS WEBSITE
Michael has been called a “Renaissance Man.” He shares many of his interests with links at his online site.
       
MICHAEL’S SITE

MICHAEL’S BLOG’S
http://mhorvichcares.blogspot.com
BLOG: michael a. horvich cares about alzheimer’s
Informed by Michael and his life partner Gregory’s journey with Dementia/Alzheimer’s including anecdotes, observations, practical how to, life lessons, poetry, and more. Now inactive but archives over 1,250 posts which received 110,000+ hits from 2010 to 2015.

http://mhorvich.blogspot.com
BLOG: michael a. horvich writes
Memoirs with observations, life lessons, anecdotes, fiction, creative non-fiction, at times fiction, poetry, dealing with grief, & more.

MICHAEL’S POETRY
http://www.amazon.com
Many of Michael’s poems have been informed by his and Gregory’s journey with Alzheimer’s but they also include much more including humor, insights, life observations, dreams, stories, etc!

Sit with Me a While: The Collected Poetry 2000-2010
Sit with Me A While Longer: The Collected Poetry 2011-2013

MICHAEL’S DOCUMENTARY —  ALZHEIMER’S: A Love Story
This 35+ award-winning documentary has played to over 90 film festivals worldwide including the Cannes Film Festival.

Documentary can be seen on: AMAZON.com(Rent: $3.00, Buy $8.00) AMAZON. com/Prime (Free,) VIMEO. Com (Rent: $4.00, Buy $9.00,) SEEDANDSPARK. Com (Subscribe: Pay what you can.)
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