ANNOUNCING: A Documentary

Very pleased and excited to announce that Gregory and I will be featured in a documentary about our Journey with Alzheimer's as produced by a team of students from Chapman University in Orange, California including Gabe Schimmel who is the son of one of Gregory's college chums and one of Gregory and my favorite long time friends.

Gabe is currently studying film production with an emphasis in editing and is enrolled in program called Community Voices - a documentary filmmaking course that partners students with various non-profit organizations across Orange County and culminates in a 10-15 minute documentary film. 

The initial goal is to produce a short promo video that the organization can use for it’s own purposes, but the actual documentary is character - based and is not produced in conjunction with the organization - the only requirement is that it be related to the social issue/cause the organization is championing. 

His team has been partnered with the Orange County Alzheimer’s Association, and the team asked to make their documentary about Gregory and my story. Gabe says, "The way you've taken care of Greg is touching in way I can't quite describe in words, suffice to say that I think your story has to potential to inspire and give hope to a lot of people. I think we have the resources to do your story justice, and I think it's a story that needs to be told."

Once the films are completed they don't just stay in the classroom - they run on PBS and screen at various film festivals, how exciting is that?

Painting

I arrived in the Art Studio at Lieberman a few minutes after Gregory and Manny arrived. According to Katharine, the Art Therapist, Gregory was in a good mood and in his way was joking with her. Then he was looking around the room and asked for me by name, "Michael?"

His response to my arrival was quite animated and made me feel warm all over.

The session got off to a difficult start as Katharine and Manny and I tried to get the table which Gregory would be using situated. We put it up on risers but it was too high and Gregory's chair still couldn't get under it.

Then we tried a hospital tray table on wheels but it was broken and couldn't be raised or lowered. The next tray table we tried worked perfectly but by then Gregory was a little frustrated, a little confused, a little angry, and mostly muscularly tense. Who would blame him.

First we worked at getting him to loosen up his arms and hands which seemed to take 5 or 10 minutes. When we began painting he responded well. There was a lot of down time thinking, and a lot of down time shut down because of to much stimulation. But when he got his hands moving it was with purpose.

Often we could not tell if he was looking at the paper while painting. Perhaps the feel of the slippery, sliding finger paint under his hands was enough. Also this time we tried loose thin plastic food handler gloves instead of the tightly fitting latex medical gloves. We couldn't tell if that helped or hindered. Next week we will go back to the medical gloves.

Also, for next time Katharine will try keeping the tubes of paint in the refrigerator to see if the tactile cold touch of the paint might help Gregory focus more closely on what his hands are doing.

During the session Gregory made appropriate comments or got the giggles. I call these moments of insight on his part, "Mini-Miracles!" I asked if he had a good time and I asked if he would like to paint again next week. He replied "Yes." to both.

In leaving I said, "Gregory, say 'Thank You' to Katharine."

"Yes," he replied.

I repeated this a couple times and each time he replied yes.

Finally, I said, "Thank You," several times. He said, "Thank You," back.

I said, "Katharine," several tines. He said, "Katharine," back.

Then he focused careful on Katharine's face and smiled and winked as if to say, "Katharine, you are in on my secret, aren't you!"

A Daughter's Prayer to God

A moving poem posted by a fellow caregiver on her Alzheimer's Blog (opens in a new window:)

http://myalzheimersstory.com/2014/05/14/a-daughters-prayer-to-god/#more-374

The LIfe Cycle

Daily OM continues to send daily inspirations that are so on target. Needed to share this one:

Today's DailyOM brought to you by:

February 26, 2015 The Life Cycle Bud and Blossom and Beyondby Madisyn Taylor Each stage we go through has its time of fulfillment and recession, as do all living things. Flowers and leaves both begin their lives as organisms so tiny we cannot see them with the naked eye. With time, they become visible, curled in upon themselves, colorful buds slowly softening and releasing. With the proper warmth and moisture, they unfold little by little, revealing with each degree of opening a new color, shape, or dimension. Sometimes buds open seemingly all at once, unfolding the full majesty of their potential, of what looks to the human eye like courage, openness, and generosity. As days go by, the bloom slowly moves through more stages, revealing still more colors, shapes, and dimensions of its essence. It falls apart, strewing its petals on the ground, or it wilts, or it closes back in on itself. When we can appreciate the full beauty of each stage of the cycle of life, from bud to blossom to disintegration, we feel more at home with our own earthly process. We can be inspired not to hold back the fullness of what we have to offer, knowing that our time to give of ourselves in this way will come to pass. At the same time, we can honor others, and the little processes that go on within the larger process of living our lives. Each stage we go through has its time of fulfillment and recession, as do all living things. Every moment of every stage has its own particular beauty, and we can appreciate that, even as most of us tend to love the spectacular moment of full blossoming most of all. When we feel the wisdom contained in the budding, blossoming, and dissolution of a simple flower, we begin to feel it everywhere, in each moment that comes and goes, in each sunrise and sunset, in every hello and goodbye, as the very essence of the pulsating ebb and flow of existence.

Mending A Broken Heart

Hopefully I won't get into trouble for "lifting" this to share with you but I do want to highly recommend the site. I have found that their daily inspirations and horoscopes (for which you can sign up to have delivered to your e-mail for free) are more often than not excellent learning experiences. Here is another sample of one of the daily inspirations:

http://www.dailyom.com

February 25, 2015 Mending a Broken Heart Stronger for Itby Madisyn Taylor A heart that has been broken and seen pain, reveals within it, a crack that allows more light in. Heartbreak happens to all of us and can wash over us like a heavy rain. When experiencing a broken heart, our ethereal selves are saturated with grief, and the overflow is channeled into the physical body. Loss becomes a physical emptiness, and longing is transmuted into a feeling that often cannot be put into words. Mending a broken heart can seem a task so monumental that we dare not attempt it for fear of damaging ourselves further. But heartbreak, like all emotions, falls under the spell of our conscious influence. Often the pain that wounds us most deeply also leaves the most enduring mark upon us. The shock that becomes the tender, throbbing ache of the heart eventually leads us down the path of enlightenment, blessing our lives with a new depth and richness.  Acknowledging heartbreak's impermanence by no means dulls its sting for it is the sting itself that stimulates healing. The pain is letting us know that we need to pay attention to our emotional selves, to sit with our feelings and be in them fully before we can begin to heal. It is said that time heals all wounds. Time may dull the pain of a broken heart, but it is fully feeling your pain and acknowledging it that will truly help you heal. Dealing with your heartache in a healthy way rather than putting it off for tomorrow is the key to repair. Gentleness more than anything else is called for. Most important, open yourself to the possibility of loving, trusting, and believing again. When, someday soon, you emerge from the cushion of your grief, you will see that the universe did not cease to be as you nursed your broken heart. You emerge on the other side of the mending, stronger for all you have experienced.

Yesterday at Lieberman

"I love you very much."
No notice.

"I love you more than the highest mountain."
Head turned towards me but out of focus.

"I love you more than the deepest ocean."
Head turned towards me in focus.

"I love you more than all the stars in the sky."
Looking at me with a quivering chin.

"I love you more than all the sand in the desert."
One tear rolls down his cheek.

"Why?" he says.

"Because you are wonderful. You are handsome."
"You are intelligent. You are kind."

More tears roll down his cheek.
"And I will always love you and always be here for you."

Time to hug him, and rock, and cry with him.

I'm Not Going to Miss You

Have I posted this previously? It is the song that Glenn Campbell wrote in his dealing with Alzheimer's as a farewell. I have previously posted it but I cried again through it on the Oscar Awards. Cry? No sob, howl. Panic that I would loose myself in my grief and not be able to be found! So I slowed myself down, tucked my grief back into the past, and for now will let it stay there. I hurt beyond belief at all that I have lost, at all that Gregory and I can no longer have in common, at all we can no longer share, and at all that Gregory will no longer miss. I just need to get through tonight so I can get up early and go to Lieberman to hug and kiss and love Gregory who I miss and will miss more and more, and maybe I'll cry into his shoulder.

https://www.youtube.com/watch?v=U8TsAh-zYFI

I'm still here, but yet I'm gone
I don't play guitar or sing my songs
They never defined who I am
The man that loves you 'til the end

You're the last person I will love
You're the last face I will recall
And best of all, I'm not gonna miss you
Not gonna miss you

I'm never gonna hold you like I did
Or say I love you to the kids
You're never gonna see it in my eyes
It's not gonna hurt me when you cry

I'm never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains

I'm not gonna miss you
I'm not gonna miss you

Compassion

Gregory, since almost the beginning of his journey with Alzheimer's, has had this quote posted on his bedside nightstand (it is still there and notice I have kept my misspelled COMPASSION.) The quote is one of the first things I framed and hung on the wall next to Gregory's bed at Lieberman. We review it together often and hopefully it has been an inspiration as well to the Lieberman Staff.

My posts over the time since he as been at Lieberman have talked about the joy and love that I receive from so many of the residents who are now part of Gregory's "family." Today is Entertainment Sunday when I get to see many of our Fifth Floor Family but also many of the residents on other floors with whom I have become friendly. Sure enough, this horoscope speaks loudly to what I experience when I am with Gregory and our new Family.

February 22, 2015 Compassion by Feeling Aries Daily HoroscopeFeelings of profound empathy can touch you deeply today, inspiring you to take action in the ongoing, worldwide fight against suffering. As you see the scope of pain that afflicts those who are less fortunate than yourself, your ability to understand these individuals’ emotional challenges can help you direct your charitable efforts toward those causes that can benefit most from your aid. You may feel a strong sense of camaraderie while interacting with those on the receiving end of your love and support today. If you remember that your circumstances are blessings that you have been given, you will likely feel no hesitation as you share your resources, time, and talents with others. It is a simple matter to integrate compassionate action into our everyday lives when we make an effort to understand how anguish and need impact the lives of those less fortunate than ourselves. When we choose to expose ourselves to the full impact of poverty and pain, we begin to understand the profound effects these disadvantages have on those who labor under them. We feel not only the pangs of our own compassion, but also the intense emotions experienced by these less fortunate individuals. This empathy becomes the catalyst that compels us to put aside our own cares in order to focus on charitable, loving endeavors that will eventually improve the lot of people who need our help. Your understanding of the challenges that others face will inspire you to take action against the plight of those who suffer today.  For more information visit dailyom.com This article is printed from DailyOM - Inspirational thoughts for a happy, healthy and fulfilling day. Register for free at www.dailyom.com

© 2004-14 DailyOM - All Rights Reserved

Crying Myself Silently

I have learned to cry myself silently
Without making a silly squeak
No body shakes or loud noises
But tears still as large as sobs

A song, an idea, a line in a play
Bring on a wave of emotions
I have learned to cry myself silently
But tears still as large as the ocean.

A thought, a memory, a photograph
Bring on an attack of emotions
I have learned to cry myself silently
But tears still as large as wars

Over time, I have learned to say
"Thank you emotions
"Thank you tears
"Just not right now

Sad, Frightening, and Beautiful

Today at Lieberman I witnessed something sad, frightening, and beautiful.

First, the set up. Today at Lieberman we had an Oscar Previews Party. The staff wore formal gowns and heels. A few female residents wore beautiful hats with feathers or cabbage roses and a few male residents wore sport coats with a jaunty scarf tossed around the neck.. There was a red carpet to walk down and you could have your photograph taken by our volunteer photographer.

Slides of beautiful dresses, beautiful people, and previous Oscar winners over the years were shown, trailers from each film nominated for best movie were shown, all categories were discussed and residents could vote for whom they thought would win.

The first trailer was from Sharpshooter, biopic of Chris Kyle, the most-celebrated sniper in American military history. In the aftermath of 9/11, Kyle decides to serve his country by becoming a Navy SEAL.

Second, the sad and frightening. As we watched the trailer, Gregory began getting upset and his upset elevated fairly quickly. He got loudly verbal, anxiously shifted around in his wheel chair, and cried. The reaction was caused by the shooting and violence we were seeing in the trailer.

After ten or fifteen seconds of trying to calm him down, to no avail, I asked him if he would like to go out of the room. (I felt like a loving mother with a misbehaving child at the movies. Instead of expecting "self control," remove the child from the situation. ) 

He said, "Yes." 

I repeated, "Do you want to leave the room?" 

"Please," he said. 

He continued to get more and more upset emotionally as I was turning his chair around to head for the door when he picked up "Peaceful the Bear" and threw him down on the floor with such never before seen force and anger saying, "There!"

Up until then Peaceful was always loved and loving. Comforting. Watching this was amazing.

Third, the wonderful. Gregory and I hugged and rocked and I cooed calming words. He calmed down once we were away from the shooting and violence on the screen. The situation and discomfort was over and Gregory was OK again. I put Peaceful back into his lap and said, "Peaceful loves you!"

The beauty in this is that Gregory still has emotions and is able to express them. Also, it is important to note that the emotions are not unreasonable or out of control. Life has its ups and downs. It is good that Gregory is still able to experience them!

Love and Commitment

Taken from: http://www.dailyom.com 
Emphasis is mine.

February 16, 2015
The Journey of Commitment
Entering into Commitment

by Madisyn Taylor

Loving and committing to another person is a spiritual process whether it involves a wedding or any other type of commitment ceremony. Often when we enter into a relationship, we allow our emotions to lead us forward without thinking more deeply about what true commitment involves. 

If we can understand that sharing our lives with another person is not just based on love but also on the hard work of being able to compromise and enter into a dialogue with them, then we are much more likely to find the key to having a successful relationship with our partners. 

So many people have not experienced a loving relationship between their own parents and therefore have no role model of what love should feel like or look like.

Many of us have been exposed to the idea that love should be romantic and sweep us off our feet. While this is a natural part of any relationship, the true test of our love comes from our willingness to explore this world with another person; to not only share in the delights that we encounter but also to negotiate the bumps in the road together. 

Generally this often takes the form of a mutual exchange of ideas, but because any relationship is based on the needs and experiences of two people, we might also face a certain amount of misunderstanding. Learning to be open and receptive to our partners and to treat their wants and ideas with respect can help us navigate even the most difficult situations. 

One way to do this is to take a deep breath, holding our partner in a space of love, and allow ourselves to listen fully with our hearts to what they have to say. Should this become difficult to do, we can also turn toward people whose relationships we admire for advice or guidance. Knowing that there are resources out there to help us and being up for exploring them with our partner will only serve to deepen and strengthen our relationship.

Entering into a committed relationship is in fact a spiritual journey that we undertake with another person. By being able to love and care for someone else with an open heart, we will find that we can reach a greater level of personal transformation, evolving along our path and learning powerful lessons about ourselves that we might not otherwise be able to do on our own.

Sunday's at Lieberman

A talented young man named Alex sung Sinatra type songs, Rock & Roll, and Old Favorites today for an audience of about 75. Cheryl join us for the festivities.

The folks were really engaged with his performance and joy abounded. At one point Gregory was so moved by the music that he embraced Peaceful the Bear with a tear in his eye.

Finally, never underestimate the power and joy of music in even the most challenged situations.

Before or After the Elephants

I am sharing this post from my writer's blog (http://mhorvich.blogspot.com - opens in a new window) here on the Alzheimer's blog as it applies as well to Gregory and my journey with Alzheimer's.

•  •  •

Euphemistically "Memorial Gardens" stands for CEMETERY!

Yesterday I spent a little over an hour at Memorial Gardens, which conveniently happens to be neighbors to the Lieberman Center.

For a while I have been thinking about educating myself about pre-paid end of life arrangements for Gregory and me. I met with Lynn,  who was very nice, well informed, understanding, and helpful.

At one point she asked Chris for help and I think after hearing me talk about planning for me and my partner, he decided to stay in the meeting. Turns out he is Gay, much younger than I, and his first lover passed away a short while ago. We had issues in common to talk about.

Not easy planning for your best friend, life partner's demise let alone your own. I told them I wanted a "no frills" cremation for both of us. Discussing the details was less difficult than I had imagined and only twice the emotional pushed the intellectual out of the way and I got choked up.

No service, no flowers, no catering, no obituary, no web site of remembrance, no coffin. Just a cardboard box. Ashes are delivered in a plain urn ready for scattering. There are two jokes about the scattering of our ashes which Gregory and I tell.

I want my ashes scattered at the circus. I just don't know if it should be before or after the elephants!

Gregory wants his ashes scattered in Lake Michigan since he so loves the water. So a few friends will gather in our bathroom, say a few nice words, and flush the ashes down the toilet. Fastest way to Lake Michigan!

Gregory and I had discussed this many years ago when we first wrote our first wills. It was hard for me to decide "Cremate" or "Bury." I still hadn't decided on the night before we were to visit the lawyer to draw up the wills.

Gregory and I were talking about the pros and cons of each when it dawned on me, "It isn't an issue of  'Do I want to be cremated or buried!' I DON'T WANT TO DIE!" After that it was easy to decide: cremation.

There are a lot of legal issues about dying and how to handle the remains. I have Power of Attorney for Health over Gregory. His nephew Mark and his wife Colleen are next in line to make decisions for Gregory if I pre-decease or if I cannot make decisions for myself they also take over that responsibility for me.

You could say that I trust them with our lives ... and I do ... and I have ... by making them next in line trustees.

Lynn suggested I look into one issue. Usually when a person dies, the Power of Attorney is terminated. I should make sure it states that I retain rights to dispose of Gregory's remains (and M&C for G and/or me!)

It gets a little more complicated. There is insurance for me in case I die while traveling and have to get shipped home. There are provisions for the pre-paid arrangements to transfer to another city if I move. The funeral director has a specific role to play as does the cemetery even thought there is no burial. There are additional fees that go to the state and city for various certificates and registrations. It goes on and on but both Lynn and Chris made it easy to understand.

So while I was dealing with something that could be very difficult, I felt empowered to be able to make decisions about the things I can control. And to have everything paid for in advance.

When Gregory and I leave this life, there will be no tangible evidence of our having been here. No grave, no stone, no tomb, no bench, no niche, no urn. What will remain is the love we were able to share with others, to be carried in their hearts until it is their turn to leave this life to go home.

Change

I like this photo of the Dandelion sending off its seeds. 

In some ways it is a symbol of the person with Alzheimer's as they slowly loose their abilities, memories, functioning. 

But it could also be seen as the world of Alzheimer's which you and I may not fully comprehend as does the person affected by dementia, as the seeds fly away while being surrounded by new, magical experiences thus the beautiful, variously sized, interlocking, transparent, translucent, and opaque circles.

Insight or Intuition? Real or Imagined? PART III

Yesterday I visited Gregory after dinner. I asked him if he would like to see photographs from our visit to Paris and he replied, "Oh Yes!" I was amazed at how energetic his answer was and wondered if he really knew what I was asking.

When Gregory gets really excited about something he borders on being emotional and crying for joy, he was there at my suggestion to re-visit Paris.

I set up my iPhone to show the photographs on his large flat screen, 42" TV. While I have many, many photos of our time in Paris, I showed the album called "Reprise" which contained the best of the photos of all the places we visited while in Paris for 11 days.

In many ways this was a significant breakthrough in my interactions with Gregory as he really was engaged with the photos, and as I named the places and retold some of the stories he really responded appropriately.

Ironically he put on his "I am a French Man" role playing but now and then corrected my pronunciation of the names of the places we were discussing.

Periodically he lost focus on the TV but I was able to bring him back. One time he got a little perplexed with me and said, "I am looking at the TV!" Sure enough when I leaned over I could see he  did have his eyes in the right place!

Throughout our looking at the 50+ photos he commented, agreed with my naming, responded to the stories. Periodically I would ask, "Are you enjoying this?" and he would reply, "OH YES!"

So lessons learned are that while Gregory's world is very narrow, and while he is comfortable with that world, it is not a bad idea to periodically revisit fun times we had in the past as long as their loss is not too traumatic. For example Paris was good, Mexico will probably be good, but I am not sure about looking at his past architecture projects and certainly would never show him photos of the condo!

I was so pleased with the evening Gregory and I spent together. I cannot describe the joy I felt at being able to give him this experience. I keep talking about "Little Miracles" and this was another one!

P.S. I enjoyed seeing the photographs as well!

Luxembourg Gardens

Luxembourg Gardens

Luxembourg Gardens

Luxembourg Gardens

 The Seine with Notre Dame in background.

  The Seine with Notre Dame in background.

Notre Dame Cathedral

The Louvre 

The Metro

Carousel near the Metro stop by our apartment.

Pompidou Museum

Eiffel Tower

 

Eiffel Tower

 M. Goldberg's Deli in the Marai

Scene of an anti-Semitic bombing 20 years earlier.

Place des Vosges, a wonderful complex of old

apartments surrounding a the park on four sides.

 Like most buildings in Paris, multi socio economic groups living together. Shop on first floor make second floor with short ceilings perfect for shop keepers apartments. Third floor with huge floor to ceiling windows for the wealthy. Fourth floor with smaller windows for middle class families. And finally fifth floor "Grotto" for students and the poor with single bedrooms and a shared bath.

La Madeleine Church outside

 La Madeleine Church inside

Laduree, a famous pastry shop.

Scare-Coeur Church on Montmartre

Scare-Coeur Church on Montmartre

Street singer on Montmartre

Us having lunch on Montmartre

Veaux de Viconte outside Paris. One of Gregory's lifetime dreams finally realized.

Famous sidewalk cafe: Les Deux Magots

Opera Garnier