The Velveteen Bear

Originally posted on my writer's blog.

The Velveteen Bear

She says that the bear doesn't hold much memory for her. It was never given a name. She was about to give up ownership, maybe take a few photos in situ, and leave it behind at the park. "Maybe someone will take it but probably, considering its condition," she said, "the park maintenance people will just toss it."

For some reason, I could not let this happen, so overwhelmed with tears I offered the bear a new home. Perhaps it is because she is such a good friend and I value this ratty bear that has been with her since her childhood, as a stand in for how much I value her. Or perhaps it is because I am generally sad that she is moving and I will miss our frequent, spontaneous get togethers.

Or perhaps I know something she does not know, especially right now as she is moving and packing and getting rid of things she doesn't want to take to the new place but I know for sure that she really values and loves this bear, whom I have named Bear.

It is so velveteenized that it would put the Rabbit to shame, even with its world renowned story. Bear has so few patches of soft fur left, when compared to its available rough meshy base, that it does take an extra something to want to hug it.

Another hint at the love that this bear holds are the numerous areas that have been over time, by a young girl and or her mother, Frankenstein stitched back together to keep it in one piece.

Further evidence of "Love of Bear," is that when she carried it into Chipotle to take a few photos over lunch, she carried it by its ear. Then she hugged it, child like, while she ordered lunch. Now if that isn't love, what is?

After lunch we went to visit Gregory at Lieberman. He took to Bear very easily. We are sure that Peaceful the Bear, Gregory's personal bear, did not take offense but rather was supportive and caring of Bear. Bears tend to be that way towards fellow bears. No questions asked and no value judgement made, appearances not important.

Maybe Bear will spend some time with me at the condo and also spend time with Gregory at Lieberman. Nice idea, huh? Then when my friend is in town, which will be fairly often since her husband teaches at Northwestern and they have a new apartment here for him, Bear can visit with his original owner when she comes to visit Gregory. She is probably one a few most loyal friends that Gregory has and now we will have Bear.

This Bear must be at least 50 years old. Most likely you have rough patches and mends too from being as old as you are, Dear Reader, and I still love you! That is why I'll bet she still loves Bear very much!

Paris Revisited

Watching the YouTube video above brings back memories of one of the greatest adventures of Gregory and my life but also a deep sadness. In re-living these adventures, and being able to feel Gregory walking besides me, I feel like travel and discovery by myself will never be as joyous again. At least not for now.

In 2005, Gregory and I spent ten days in Paris. At that point Gregory was three or four years into the diagnosis of Dementia/Alzheimer's but he was doing pretty well.

We joined, last minute, on a trip that friends Chuck and John had been planning. We got so excited hearing about their plans and at the potential of spending time with them in Paris, not to mention being in Paris at all, that within three days I was able to arrange all the details: free miles first class on Lufthansa Airlines and an apartment on Isle du le Cité overlooking Notre Dame Cathedral (located just around the corner from Chuck and John's apartment. It was a trip that was meant to be.

During part of the trip we did things together with Chuck and John and at other times, we went on our own adventures.

Click here to see our photos of Montmartre.

Another of the many highlights of our trip to Paris, and probably the most significant was a visit to Vaux-leVicomte which had been a life long ambition of Gregory's.

Click here to see our photos of Vaux-le-Vicomte

Keith Jarrett

Listen to Keith Jarrett play "Somewhere Over The Rainbow" while you read this post.



By now a number of years ago, as Gregory's Dementia/Alzheimer's was getting worse and fairly quickly, dinner time would prove to be a difficult time for Gregory and me. For him to figure out how to navigate the food on his dinner plate and in the beginning of this new loss for me, losing my patience with him.

On one particularly difficult night, I do not remember all the details, but I was not only impatient but also mean. I yelled at Gregory for not knowing how to use his fork and for sitting there staring at his plate. I encouraged him to eat but he was really having difficulties. I grabbed the fork and began feeding him. But not with love. With anger and saying something like, "OK then I guess I am just going to have to feed you like a baby!"

Can you imagine how I feel now remembering back and writing this. In some ways, writing it as an apology to Gregory. Now, at Lieberman, he is unable to feed himself and I will help him to eat dinner (or lunch.) Now I do it with love, and care, and patience. As I carefully wait for him to have finished his chewing I bring the next portion to his mouth announcing what I am offering: "Here is a bite of roast beef now." "Here is some delicious mashed potatoes." "Mmmm, this creamed spinach is one of your favorites." I repeat my monologue (or is it a dialogue?) with each bite. Sometimes I'll just say, "Ready?" or "OK?" or "Do you want more?"

Several times, at Lieberman, I have talked to Gregory about how sorry I am about some of the times I was mean before and I might cry a little. While he does not have much language, I think he understands what I am saying and I know that he accepts my apology.

The reason for the Keith Jarrett above is that we used to listen to music at dinner time to make the evening more pleasant and to help cover the fact that conversations were no longer possible unless they were one-sided coming from me. The music made for a mutually enjoyable experience. Keith Jarrett is one of our favorites.

After one particularly difficult blow up, Gregory and I sat quietly through the rest of dinner, tears running down my face, Gregory suffering quietly as well, while Jarrett's Köln Concerts was playing. That piece, if you are not familiar with it, is somewhat noisy, not really melodic, but beautifully strong and emotionally played by Jarrett with his moaning and breathing heavy showing up behind the music. He puts his entire self into the performance.

When the piece ended, Gregory said to me, "That was perfect for our situation. Wasn't it?" At that we were able to "make up" and hug and get on with our life. We were both always good at apologizing well and picking up our love again as we continued doing the best we could do with a horrible situation: Alzheimer's Disease!

In some ways, the more I listen to Köln, I think it would be great background music for the movie of Gregory and my life.

ALZHEIMER’S: A LOVE STORY

Synopsis

Alzheimer’s: A Love Story follows Greg and Michael as they struggle with a disease eradicating the memory of their relationship 40+ years in the making.

Click here to see the festival web site

Wednesday, August 5 • 6:30pm - 8:30pm 

Love/Romance Short Film Package: Never the Same Love Twice 

"There are all kinds of love in the world, but never the same love twice." - F. Scott Fitzgerald

Short films about the complexity of romance.

Then & Now | Directed by Kyle Bashford Liam Bashford | 10 min. | United Kingdom, 2015. US premiere. 
80 year old George watches in disbelief as the news of the first 9/11 attack is reported. We follow his psychological journey as we reveal his personal loss and connection with September 11th 2001.

Alzheimer's: A Love Story | Directed by  Gabe Schimmel, Amanda Le, Riani Singgih, Monica Petruzelli | 16 min. | USA, 2015. 
Every day a man named Michael comes and visits for a couple hours. No one can say for sure if Greg knows who Michael is or why he comes every day, but from Michael’s point of view it’s only natural that he do so- after all, Michael has loved Greg since the day they met 40 years ago.

He and She | Directed by Marco Gadge | 16 min. | Germany, 2015. East Coast premiere.
Thomas is on his way to a life that includes only himself and his girlfriend… but when she breaks up with him, the dream goes up in smoke.

Rip It Up & Start Again | Directed by Stephen Ryan | 7 min. | Ireland, 2015. New England premiere.
With pen and paper a quiet, a retiring man reaches out to his one true love. But writing the perfect love letter is only half the battle.

A Tenista | Directed by Daniel Barosa | 15 min. | Brazil, 2013. New England premiere.
Ju is late for her pricey private lessons. Consumed in a marathon of family chaos, SMS texting and hormones, the improbable pubescent tennis player runs from a secret.

De Smet | Directed by Thomas Baerten, Wim Geudens| 15 min. | Belgium, Netherlands, 2014. New England premiere.
The brothers 'De Smet' created a system to live their lives as singles in the most comfortable way. When a new woman moves into their street, their synergy turns out to be a house of cards.

Moving On | Directed by Mike Spear | 11 min. | USA, 2014. New England premiere.
This short film takes a look at what would happen if even breakups were contracted out. And you thought getting dumped by text was embarrassing! MOVING ON is about what happens when you find you need to move on and move out at exactly the same time. 

---

Wednesday August 5, 2015 6:30pm - 8:30pm
The Vets - 6th Floor Ballroom (One Avenue of the Arts, Providence, RI 02903)

  Shorts Package

• Tags  Docmentary, Drama, Romance, Short

On Death

Written by Henry Scott Holland (27 January 1847 – 17 March 1918) was Regius Professor of Divinity at the University of Oxford

Memories
By Michael A. Horvich

Memories of earlier times arrive
No longer to be there for me, or us
So I sit at computer and compose
And console self as best I can.

I sit on the summer warmed balcony
The grass and trees growing lush
On the roof deck garden below us
As this poem begins to blur.

My coffee steams in the hot sun
My toast: rye with raspberry jam
The birds chirp and tweet and twittle
As the cold tears wet my cheeks.

"May I come out and join you?" he asks
With an up turned questioning voice
"But off course you may and welcome!"
As I reply with sorrow's memory.

We talk about flowers below us growing
About the sun and clouds above us moving
We sit together quietly holding hands
As my memory is unable to quiet itself.

I stick my expecting bare feet into
His empty, sun warmed worn sandals
He suns his legs stretched over mine
And I wonder with whom can I cry?

Deep gasp after gasp after breath
Tears continuing to flood and fill
A sadness, an emptiness, a grief
So deep as to drown without hope.

Growing Strong

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Delirium vs Dementia

I learned this the hard way. Gregory and I had been visiting family in Michigan and he began a horrendous fever/ cold/cough. By the time the weekend was over and we drove home four and a half hours to Evanston, he was really ill.

At the time he was still functioning fairly well with his Dementia but due to the Delirium he was down to 10-20% of his former already lowered self. I had no idea what was going on. I was able to compensate, calm him down, and get him to bed but it was a trial by fire for me.

Some weeks later I came across an article about Delirium and BINGO, I understood what I had experienced! It occurred again when he had his bout with Kidney Stones. This time I was prepared.

To find out more, read on:
http://www.aplaceformom.com/blog/7-20-15-delirium-vs-dementia/

I Love You

Possible Film Festival Poster

Being created by Gabe. Thinking about a tag line.

Earlier Times

Pat just shared these photos with me. 

Pat joined Gregory and me for a

long weekend in Puerto Villarta.

Gregory and Pat in the condo.

DocUtah

These are my comments to friend Kate Swaffer on her blog which is written from her point of view as a person who has Dementia. Gregory was never able to give me this perspective so I value hearing from and sharing Kate's journey as she so articulately and eloquently writes. http://kateswaffer.com

• • •

As always Kate, thanks for your beautiful view, open, honest view of "life on the other side" which could also be called "the right side" or "the best side" or "the it is what it is side" or "doing what's right with the best side you've got." Or I go on!!!

What an adventure you had. Be sure to allow recouping and reentry by taking a vacation from the vacation. We always took a week or two to rest up and regain ourselves after a hectic, extended trip. Enough advice from me! Done with love.

Gregory and I said from the beginning when we received the diagnosis: "We have a choice. Lie down and die or hunker down and keep going." We hunkered and never regretted the choice.

To quote the article on "The Australian Journal of Dementia Care" on Prescribed Disengagement: "When Kate Swaffer was diagnosed with younger onset dementia, she was advised to give up work, study and life as she knew it, put her affairs in order and investigate aged care options. Instead, she ignored this ‘Prescribed Disengagement™’, as she terms it, and reinvested in life – something she recommends to everyone who has been diagnosed with dementia."

In some ways Gregory and I did both. We Disengaged from everything that was a should or ought or a "have to." We gave up life "as we knew it" after studying it and getting rid of the parts we just didn't want to waste our time on! We "triaged:" DUMP these activities in our life, KEEP these, THINK about these and decide later.

We closed Gregory's architecture firm realizing we could survive well enough without working and that the time spent at the firm was "for others." We wanted our time to be spent "for ourselves."

We traveled the world, we subscribed to theater seasons, and went to the opera. We entertained, we increased dinner out with friends, we made short trips around the area. We sold our rental property, the architecture studio, our home (which was all part of the same property collective) and bought a more efficient, smaller, lovely condo in the heart of downtown Evanston, a small city just 30 minutes outside of Downtown Chicago by METRA.

At the same time, we spent time creating a life that would be easier for Gregory to manage. As he needed, I was able to do more and more for us. I got our financial and legal affairs in order, which was no mean trick being a same-sex couple without any protections under the law. I learned how to take care of me so I could better take care of him as the needs increased. I strengthened our support base with family, friends, doctors, therapists, specialists, caregiver companions, etc. I studied the disease and researched our options. My work allowed Gregory to have wonderful days filled with love and things he wanted to do, not things he had to do!

Basically, with the diagnosis, with the knowledge that it gave us, knowing that time was more important and limited, we reinvented ourselves as we would really like to be: not based on expectations from our earlier selves, or family, or friends, or community, or society.

By both "giving up life as we knew it" and by "creating the new life we wanted to live," we lived "Happily Ever After" and are still doing so even with the progression of Gregory's Dementia/Alzheiemr's and both of our ages:-) We are good! We carry much JOY even though it may be on the shoulders of SORROW.

What Really Matters?

July 24, 2015 Going Deep Self-Examination At Depth by Madisyn Taylor To reach the depth we wish to access, we must dive below layers to the deepest parts of ourselves. There are times when life urges us to seek more. Small changes to our comfort zone may fail to alleviate any sense of stagnancy or frustration, and we may need to examine our lives and ourselves more deeply to find the right place to start. Everything we need for success and joy lies within. But so often, life’s debris accumulates, building layers around our core that makes it difficult to access the truth that resides within. To reach the depth we wish to access, we must dive below these layers to the deepest parts of ourselves. The first layer can be found in our minds. Our to-do lists and busy work are usually less important than we think, so we must look past them to examine the thoughts that matter most to us. The next layer can be found in our hearts, where past hurts and disappointments can sometimes cover up our vulnerabilities, as well as the truth of who and what really stirs the love within us. We can choose to go even deeper – to our center. If we can go beyond anything has affected us to the point that it blocks us at the gut level, we can reconnect with our power, our raw instincts, our organic yeses. Here, at the core, lies our truth. Our core is our foundation that supports us and what we’d like to build our authentic life upon.  When we examine ourselves to these depths, we are able to find what we wish to bring to the surface and what we wish to let go. When we remember what lies beneath our layers, we can look at what was floating on the surface, causing blocks and pains, and understand the purpose that they served. Oftentimes, it is the built up debris that causes us to go deeper, so we can search for the truth. Go deep, live life from your truth within, and watch your innate beauty manifest outward. • • • I have been able to do this as the result of one of the many gifts that Gregory's Dementia /Alzheimer's has given me. What I have discovered living at my deepest self, my truth within, my center is to be able to love my Gregory just as he is today without holding on to the past, to be able to still bring him joy in small ways at a level that makes sense to him, not necessarily that makes sense to me, and to share the JOY I know with as many people as who will accept it: family, friends, acquaintances, Lieberman staff and residents, people I pass on the street. I am optimistic, upbeat, calm, and always smiling inside and I will make sure that shows through on the outside.

Click here and see the "trailer" and synopsis for ALZHEIMER's: A Love Story at the DocUtah Film Festival. (Not sure if the trailer is working yet.)

http://docutah.com/showcase/alzheimers-a-love-story/

Rhode Island Film Festival

Click here and scroll down to see the description for ALZHEIMER's: A Love Story included in the "Love/Romance" package offered at the Rhode Island Film Festival.

http://riiff2015.sched.org/event/aef6ba89d0a79aab49bb519e400ee638#.VbK_WmAQ8mk

2015 DOCUTAH International Documentary Film Festival 

St. George, Utah - September 8-12, 2015

Dixie State University welcomes you to the 2015 DOCUTAH International Film Festival, where you will find inspiring and entertaining documentaries shown among the magnificent red cliffs of Southern Utah. Independent documentary films inspire audiences by providing a global connection to the universal human experience. DOCUTAH brings together independent filmmakers, aspiring film students, citizens of the world and the Southern Utah community in an educational setting on the campus of Dixie State University. Join us for the 2015 DOCUTAH International Documentary Film Festival.

Morse

I probably have written about Morse previously but this time as I mourn his passing, I am writing his obituary. RIP Morse. July 2015.

I don't know the exact date of his passing as this is how it happens at Lieberman. One day you notice that someone is not at their usual place in the dining room and you ask about their whereabouts. Or you notice that someone is not looking or acting well today. Due to privacy requirements you usually get a whispered, "He is not feeling well." or "He is in bed today." or "He passed yesterday."

So without warning, without ceremony, when you find out that one of your Lieberman Family has died, you privately mourn their passing, you reflect on the years or months of "friendship," and you mentally light a Yahrzeit candle, the Jewish custom of lighting a special candle that burns for 24 hours.

Morse. A quiet gentleman with his black baseball cap firmly in place could often be found shuffling down the hall from point A to point B. He only spoke Russian and a little bit of Yiddish. He would always light up when he saw me getting off the elevator and wish me "Good Shabbas."

Usually "Good Shabbas" would be the greeting from Friday sundown until Saturday sundown but for Morse it was a 24/7 kind of greeting. To him it was like saying, "Hello." or "Good to see you." or "Take care." or "I love you!" We also used "Zei Gazunt" meaning "Be Healthy!"

One time while I was waiting for Gregory to return from physical therapy, Morse and I had a sit down and a ten or fifteen minute discussion. It was totally in Russian as Morse told me his stories. If he frowned as he talked, I did as well. If he seemed happy as he talked, I smiled.

I didn't reply as Morse didn't seem to need me to reply, he just needed me to listen to his stories as he spoke (or for all I knew babbled) in Russian. And a good thing this was since I do not speak Russian! We both enjoyed the conversation and when I had to take my leave, I wished him "Good Shabbas" and in return he wished me"Good Shabbas."

Now, Morse, rest in peace and "Good Shabbas" to you.

A Joke

Yesterday at dinner, Geraldine, one of Gregory's table mates, started a joke: 

“Knock knock,” she said.

Wondering if it was going to be a joke or curious to see where she would take it, I answered, “Who’s there?” 

To which she replied, completing the joke, “It’s me. I’m here.”

There is something highly telling here.

Documentary Film Festival Acceptance

Just found out from Gabe that ALZHEIMER'S: A Love Story, the documentary has been accepted to two more film festivals. Congratulations to everyone that helped make this documentary a reality: Gabe, Monica, Riani, Amanda, Sally, Pedro, Gregory, me!

The first you may recall was the Rhode Island International Film Festival.

Number two is Docuwest

And Number 3 is DocUtah

Today at Lieberman

Yesterday I made a Rhubarb pie for Gregory.

Today, at Sunday's Entertainment, a man named Michael played his accordion and then the piano. Here are a few photos and a movie clip. Watch for a surprise ending on the movie.

The Rhubarb Pie

Gregory listening to Chopin at today's Sunday Entertainment

Gregory enjoying the accordion player at todays Sunday Entertainment.

Watch for the surprise ending.

Gregory's Birthday

Somehow I forgot to post these photos of some of the gifts Gregory received for his birthday. We also posted about 15 birthday cards on his wall.

Grateful

I have posted this here and also on my writer's blog. It is mostly about me with only a little about Gregory. If you haven't visited my writer's blog it is at: http://mhorvich.blogspot.com

Every now and then I sit down at my computer to remind myself how wonderful my life is. As classical music is playing, I sit here with a delicious cup of coffee, brewed in my state of the art, completely equipped kitchen. My refrigerator and pantry are filled with everything I might need and in some cases a few things I don't need (Guilty :-)

The HVAC is keeping the environment a crisp 72 degrees as the thermometer outside on the balcony tips 90.  The Basil, Lavender, and Rosemary are flourishing in the morning sun that sweeps the balcony and fills the condo with bright light and hope. It does the same again at sundown only as reflected by the tall buildings a block or two across from me.

The floors shine cleanly having been cleaned by my housekeeper yesterday and the bed is newly linen-ed as are the bathroom towels. The condo is, as it usually is, in order with things put away and others in their place. The collections fill shelves and tables and desks but in an orderly fashion so that many have said, "Doesn't feel cluttered!" My closets are clean, once again, as we begin at the top of the "messy/orderly" cycle only to return to the messy and then once again back to orderly.

The green plants growing in the living room say "HOME." The art work and black and white photographs, mostly by friends, hanging on the walls of the condo in the "regulation" black frames say "HOME." The Dragon's Blood Red bathroom with its Asian Collection filling one wall, the Colonial Blue Guest bathroom, the deep and intense gray that flows on the condo walls in a zig zag from the entrance door to the far living room corner say "HOME." The TV Room/Den, with its large flat screen Smart TV, more art and plants, and black leather guest sofa-bed say "HOME." The "Leaving and Arriving Shrine" at the front door say "HOME."

Most of all probably, Gigi and Emma, our two three year old cats say "HOME." They greet me on my arriving and send me off on my leaving. They sleep most of the day but also chase and run and get into trouble. They never get up on the kitchen counter or tables, except when I catch them. Emma plays "fetch" with her red and blue puff ball and Gigi plays the same with her crumpled up calendar page. At night they snuggle next to me as we all fall asleep.

My car is parked easily in the garage that is just a few steps away from my unit, down a flight of stairs, and out the door into the parking garage. The 2005, white, convertible rag top was almost replaced but after a little soul searching and some advice from my Financial Advisor (whom I call "Mom") is here to stay for as long as it serves me, which it does well.

Out in the neighborhood, within walking distance, is located almost everything I need: some 90+ restaurants, grocery stores, library, postoffice, book stores, bakery, a 7-11, clothing shops, a bicycle shop, my barber, a 16 screen movie theater, an art supply store, cleaners, and more.

If going into Chicago, the CTA and the METRA systems are less than half a block from the condo and after a 30 minute ride, I am downtown. When I do take my car out of her parking place easy access to streets and highways and expressways makes getting around easy.

I am able to live with Gregory's Dementia/Alzheimer's Disease due to the fact that he is being so well taken care of at Lieberman Center and by Manny. I am filled with JOY even though it is carried on the shoulders of SORROW. I enjoy our visits and am so filled with love at Gregory's "Monumental Momentary Miracles" of engagement as well as with the interactions I have with many of the other residents and staff. I bring him treats, bake pies, keep his refrigerator and cabinet filled with goodies for him and for the staff to share. We laugh and cry together. We kiss and hug. We get silly sometimes and then laugh some more.

Most of all, I wake up each morning grateful for who I am and for what I have. I do not take this for granted. Rarely is there something scheduled on my calendar that I do NOT want to do. Rarely is there anything that I am worried about. My concerns are almost nonexistent. Making sure Gregory is doing well at Lieberman does take some time and at times does cause some concerns, but the details are always worked out and I have very little, any more, to fear or dread for his future.

I can travel a little (do not want to be away from him too long,) attend opera and theater and movies. I can enjoy meals out with friends and family. I can take myself on little shopping or antiquing adventures. Pretty much I can buy what I want although my wants are minimal. Sometimes family comes to town and I enjoy their staying in the condo. Sometimes friends do the same.

Sometimes I am very active and other times I never leave the house or get out of my "jammies" I just purchased a "Senior" discount ticket, as well as getting an "Industry" discount to see a friend in Chicago Folks Operetta's Madame Pompadour for Saturday night. During the day I'll walk over to the lake to spend some time at the annual Evanston International Art Fair and look forward to the operetta performance that night. Meanwhile I have to go take the Rhubarb Pie out of the oven and then am going to visit Gregory. Rhubarb is his favorite.

Being 70 isn't so bad!

Sometimes...

Celebrating July Birthdays at Lieberman

I brought Gregory flowers for his "yet another birthday" celebration.

Gregory and Peaceful resting before the party.

BIRTHDAY PHOTOGRAPHS TAKEN BY JAKE BLOOM

John had to leave before the group photograph. 

From top left: Ken, Jake, Patricia, Sheryl, Bernice, Victor, Larry, Gregory, Jan, Sharon, Cheryl, Kathleen, Michael 

I love that man so much.

  

That man loves me so much.

Gregory acknowledging his name when the birthdays were announced.

Clapping along to the music. 

A gift from Lieberman to Gregory

Sunflowers from Patricia and Ken, Kathleen & Vic and Sheryl & John brought chocolates, the others brought their gifts to Gregory's July 4th party. Thanks one and all!

Outside after the party enjoying the sun.