Opera or Circus

There is a life
On the verge of which I seem to sit,

Which I yearn just to feel, to touch,
And not just to ache.


Where there is pain
Just under my emotional haze
That carries my sorrow
On the rounded tip of a perching tear,

There are so many events
Just about to happen or not
Which need written their stories or poems
Desperately couched in words not yet written.

There in my oftentimes desperate need
To fashion a clay understanding
A three dimensional model of my world
So I can see it, touch it,

There is the frustration and drive
To keep up with my speeding self
As a major opera house production but
also as a one ring tented circus.

The above meditation arrives daily at my e-mail's door. This one spoke loudly to me as often, in the midst of our Alzheimer's Journey, I am not able to interpret or see how to apply the meditation.

WONDERFUL THINGS THAT THERE ALREADY ARE

Gregory often tells me he loves me.

His five to nine year old boy behaviors are endearing.

He tries hard to "get it right."

He seems to hold on to knowing what he doesn't know, like do NOT use the garbage disposal.

Gregory always says thank you.

He enjoys the meals I prepare for him and "goes on" about how delicious they are.

Says "Oh Goodie" when I tell him about our next adventure or who is coming to visit.

He still tries to communicate although words usually fail him.

In bed at night, we hold hands as we fall asleep.

He apologizes when he does something stupid.

Gregory tells me that I cannot always be calm and understanding.

He loves to paint and always looks forward to seeing his mentor/teacher/friend Nancy.

He shows me the daily architectural picture in his calendar.

He makes the bed when he thinks of it.

He laughs at my jokes and silliness. 

I love him.

Reproduced here in its entirety a post by my friend Jan. Click here to visit Jan's Site.

“The Journey” by Mary Oliver

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice—
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do—
determined to save
the only life you could save.

Agora by Magdalena Abakanowicz

Agora is the name of a group of 106 headless and armless iron sculptures at the south end of Grant Park in Chicago. Designed by Polish artist Magdalena Abakanowicz, they were made in a foundry near Poznan between 2004 and 2006.^[1] In 2006, the Chicago Park District brought the work to Chicago as a permanent loan from the Polish Ministry of Culture.^[2] Similar installations have been constructed throughout the world, butAgora is among the largest.^[3]

Progress or Progress? Mine or Alzheimer's?

Today I was able to automatically say, "If you don't know what to do with the hanger, leave it on the bench. I'll take care of it." I automatically did so in an even, loving manner.

Lately Gregory has been getting "middle age spread." Interesting that he took until 64 to begin. So a lot of his clothes, especially pants, no longer fit. Actually a while back I had though about getting rid of most of his clothes so his choices would be fewer. He is taking care of that himself now.

He will have two pair of kaki's, two pair blue jeans, and two pair of black jeans. One to wear, one in the laundry. One black belt to go with his black shoes, one brown belt to go with his brown belt, one pair of sandals, one pair of gym shoes. Black sox and white sox.  We talked about that today and he seems OK with the changes. He is SO easy going. Amazing how we are learning, through this Alzheimer's Journey, how much is enough.

Now extinct from his associative vocabulary: underpants, undershirt. He recognizes "Blacks" to refer to his morning before getting dressed clothes and "Sleeps" to refer to his shorts and "T" shirt for sleeping. He gets very confused between his WHITE night sleeps shirt and his WHITE daytime undershirt. I am working on that one. Maybe different colors?

Why The Anger?

Lately I have been feeling so angry. So angry. Why?

I have a choice about how I choose to feel. Why do I choose anger?

Would I feel like this, if I had one, towards my 3 year old son?

Would I feel like this towards my mother on her death bed?


I think the anger comes from trying to live in his world and to live in mine as well.

His gets more out of order, more out of kilter,  his life crazier and crazier each day.

And while I think I can deal with a certain amount of life's disarray and disorder,

The kilter and crazy get me, I don't know how to be out of balance and crazy.


I am angry because there is nothing I can do to change the course of our life.

I am angry because even when I come up with a new scheme that works

Eventually it peters out and dies while I have to continue living, dealing, and coping.

I am unhappy and angry as I watch the person I love the most dissolve and evaporate.


I cannot begin to tell you how I feel, I can only tell you I want to run and hide

Knowing there is nowhere to run or hide, my emotions, our life will be there.

Its like having a world of sorrow surrounding you, slowly cutting off your air supply,

And not knowing how to breath the precious little bit of oxygen that is still available.


I feel like the captain going down with his ship, standing on the bridge until the end.

I feel like the firemen rushing up into the World Trade Towers never to come down.

I feel like a child trying to understand his pet's death, yet not understanding death itself.

I feel like I am slowly twisting the knife of my own death yet not wanting to die.


If he was blind I could guide him, read to him, describe a field of spring flowers.

If he was lame I could push his chair, brings things to him, bring him to things.

If he was cancerous I could hold him, sooth him, sing to him, help him to die.

But he has Alzheimer's, I have no such comforts, only hoping I am doing my best.

A Quote

"Anything that matters never gets easier." Philip Seymour Hoffman
Shared by my friend Stephanie Kallos.

Defending Myself

I walked down the street and the passer-by called me "Kike."
I did not answer nor defend myself for I know the true me who I am.


I walked down the street and the passer-by called me "Fagot."
I did not answer nor defend myself for I know the true me who I am.


I walked down the street and the passer-by called me "Honkey."
I did not answer nor defend myself for I know the true me who I am.


I walked down the street and the passer-b called me "Christ Killer."
I did not answer nor defend myself for I know the true me who I am.


I walked down the street and the passer-by called me "Nigger Lover."
I did not answer nor defend myself for I know the true me who I am.


I walked down the street and the passer-by called me "Ugly American."
I did not answer nor defend myself for I know the true me who I am.

When Gregory calls me through the actions of his Alzheimer's.
I wish I could do the same for him.

Researchers and Their Studies

Aaron, a researcher and doctoral student who has "adopted Gregory and me" as part of his dissertation on care giving couples writes: "I've been keeping up with the blog. Sounds like things continue to be interesting, challenging, frustrating, sad, loving, good, bad, all that this journey is -- and you two keep moving through it with typical M&G grace. I look forward to being able to catch up in person sometime soon."

I replied: "Your descriptors of G and my journey according to your keeping up with my BLOG almost make what we are going through seem romantic. I do not mean to be sarcastic but I have felt so sad, and heavy lately with no where to turn for escape. I have been struggling with both arm's rotator cuffs being "out." No precipitating cause so I kiddingly call it the "Atlas Syndrow."

"I have quickly jumped on getting them back into working order by acupuncture, massage, physical therapy, exercises, alternating cold and hot, homeopathic creams, and pills under my tongue. I am feeling better but everyone tells me it will be a long, slow process. I am not giving up. I am treating it like a "bad cold" which I am taking care of and which eventually will go away.

"But it has been hard "Keeping Calm and Carrying On" for both of us when I feel so functionally limited. G continue to not know the front from the back of his underwear, the microwave from the refrigerator, yes from no. We have been enjoying may movies at home, some theater out, my cooking delicious meals, and now we will go have a slice of sour cherry pie just out of the oven. Which you were here to share it with us.

"Hope you are being "a good boy" and doing what you need to do to get your studies completed with a Dr. added on the front. Take care. When we get close to the 25 or 26 we can make more detailed plans,

We both really enjoy our time with Aaron. He is a good hearted person and a good listener besides a good cook. I have always said that being part of a research study (and we have been through three or four by now.) It is a good experience because the researcher pays attention to Gregory and causes me to think through the nature of and lessons learned from our journey. Also, the researcher actually wants to hear what I have to say without my worrying about boring him or her. Honestly, what we say might help others, but really we benefit the most and feel selfish about it!

Never

Never have him do something that requires a specific outcome.

Never say something that requires a response.

Never ask him a question that requires an answer.

Never think you understand what he is saying.

Never ask him to clarify what he just said.

Never ask him to clarify what he just did.

Never trust him to follow through.

Never expect him to know how to do something that he did yesterday.

Never help him because you will only confuse him more.

Never assist him in gathering his thoughts because even then they will be disorganized.

Never have him get dressed twice in one day as he will not know how to do that.

Never guess about what he is trying to say as you will never find out for sure.

Never rush him as he will screech to a halt.

Never get frustrated with him as his behavior will become more confused.

Never depend on him as you will probably do it yourself anyway.

Never count on him in emergencies as you will probably have to take care of it yourself.

Never count on him in extreme emergencies as you will probably die anyway.

Never change the order or place of things as he will become confused.

Never expect him to find things even if they are in the same place they always are.

Never suppose he can see what you are pointing at.

Never think that when you touch something to show him what you are talking about that he will see it.

Never think that you can change subjects too quickly as most often he cannot release his focus.

Never ask him to bring you something as you will never get what you asked for.

Never be prepared as you will never know what to be prepared for.

Never
Never
Never

Sometimes later
Sometimes tomorrow
Sometimes never again

Maybe not this time
Maybe not the next time
Maybe never again

Or not.

Shanah Tovah

To our Jewish Family and Friends, may you be inscribed in the Book of Life for a good year. Shanah Tovah. May your new year be sweet and abundant! Rosh Hashanah - Happy New Year.

Fondly, Michael and Gregory

The Case of the Missing Strawberry Shortcake

I am sure that some of this has to do with my own disappointment. I continue to tell myself, "Don't take it personally." But I take it personally. I can only imagine how he must have felt but for me I tried to do something nice for him and it only caused more problems. I keep trying.

The other day I planned to make us a nighttime treat. After dinner I made a batch of baking powder biscuits. Then I plucked and sliced the strawberries, sugared and lightly watered them to bring out their juices, and gave them a partial mash. Finally, everything was set aside for later.

After dinner we watched some TV then went into the kitchen together to assemble our dessert. G sat on the stool and watched as I sliced the biscuits and placed them on a plate, topped them with strawberries, and loaded the creation with lots of whipped cream. Kiddingly, Gregory used to say, "The only reason for shortcake is to be able to have lots of whipped cream."

I picked up my plate, pushed the other plate towards him saying, "Bring yours," and headed back to the TV room. A few minutes later (actually a few to many minutes later) Gregory arrived with the baggie of extra biscuits that had been set aside for breakfast.

"I am confused, aren't these too many?"

"Those are for tomorrow. Your strawberry shortcake is on the counter in the kitchen," I said amazed at where a short circuit of his brain had taken him. He had watched me assemble, he saw me pick up my plate, he had heard me say "Bring yours" as I pushed it towards him, but none-the-less he showed up carrying a baggie of leftover biscuits announcing he was confused.

At times like this my brain goes numb with disbelief as I struggle to interpret what had happened, remain calm, figure out the next step, still trying not to just do it for him. Maybe I should be grateful that he knew he was confused. Sometimes he doesn't realize he is confused and behaves as if he knows what he is doing.

So he went back to the kitchen to look for his strawberry shortcake and was gone again for quite a while. Waiting is difficult for me but I still believe that it is important to allow him time to solve his own problem. Sometimes he is able to do so.

Finally I got up and went to see how he was doing. I found him looking around the kitchen not knowing what to do. By then he had probably forgotten where his strawberry shortcake was, the kitchen in his mind must be a HUGE COMPLICATED place, and maybe he had even forgotten why he was standing there.

I pointed out his plate and he said something like, "Oh that was easy." 

For him, maybe. For me, devastating.

I know, I know. You are probably thinking why didn't I wait until I was sure he picked up his plate? Why didn't I just bring his into the TV room as well? Why didn't I just go back and get his for him? Why didn't I just do all this calmly without taking it personally, letting it diminish my good intentions, causing my mind to go numb, bringing a few tears  of despair closer to the surface? That's easy for you to say.

At least this time I stayed calm and didn't get angry or say something like, "How could you not know what to do?" or worse. At times like this I have to balance back and forth between perceiving and treating him like he is normal and behaving and treating him according to his "current normal." Or figuring out in the field what to do next when what usually worked didn't work this time.

Not an easy job. I do get better at it. But my guess is that Gregory's decline will constantly my outpace improvement. The question is will I survive to outpace his Alzheimer's? Bon appetite!

Gregory's Mantra

I may have written about this before but it is worth doing again.

Every night before Gregory goes to bed he recites his "mantra." The mantra comes from a poem by Lao Tzu (born around 571) in a book called "The Enlightened Heart: An Anthology of Sacred Poetry" edited by Stephen Mitchell.

The poem in its entirety reads:
“Simplicity, patience, compassion.
These three are your greatest treasures.
Simple in actions and thoughts, you return to the source of being.
Patient with both friends and enemies,
you accord with the way things are.
Compassionate toward yourself,
you reconcile all beings in the world.” 
― Lao Tzu, Tao Te Ching

Every night before Gregory goes to bed he recites his "mantra:" 

Simplicity

Patience

Compassion

Simplicity, patience, compassion ... as Gregory returns to his source of being, as he lives with the way things are, as he reconciles his here and now in the world.

War Some of the Time

I am sharing this with you as taken from my friend Jan's post.

“War some of the time” by Charles Bukowski

when you write a poem it
needn't be intense
it
can be nice and
easy
and you shouldn't necessarily
be
concerned only with things like anger or
love or need;
at any moment the
greatest accomplishment might be to simply
get
up and tap the handle
on that leaking toilet;
I've
done that twice now while typing
this
and now the toilet is
quiet.
to
solve simple problems: that's
the most
satisfying thing, it
gives you a chance and it
gives everything else a chance
too.

we were made to accomplish the easy
things
and made to live through the things
hard.

xxxx

xxxx

xxxx

"War Some of the Time" by Charles Bukowski, from Sifting Through the Madness for the Word, the Line, the Way. © Ecco Press, 2003.T

Shadows

This is the cause of human suffering, in Habib's opinion: Humans are like the Crow of legend, Crow who became obsessed with her shadow, pecking at it, tearing at it, scratching at it, until she woke her shadow up and it ate her so that Crow is now dead and her shadow is alive.

Humans cannot stop staring at their own shadows, at some shape they think is fixed, a shape that they come to believe is real. Everything constricts to that shape; they become only that, nothing more, and then they are dead.

Oh, life for humans on this planet would be so much less fraught with sadness if they could know one thing: that shape is an illusion. The woes and angers, the confusions and pains -- all these are born of that narrow vision, that staring into the unchanging shape of ones's own shadow.

Hotel Anegline: A Novel in 36 Voices.
Stephanie Kallos et al
2010
P. 218

Maybe with awareness we can become shape shifters, always trying on new ones, always reflecting but not fixating. That is our only hope. (M. Horvich 2012)