The Telephone Message

Gregory listened to the messages on our answering machine yesterday while I was out. I am grateful that he was aware enough to write the message down for me that Auntie Elaine (Horwitz) called to say hello.

This is what the post it looked like. What to notice: 1) Almost got "Elaine" spelled correctly. 2) Totally messed up "Horwitz." 3) Printing was shaky, tentative, and smeared compared to his old even, precise, neat architecture printing.

Gregory is Reading the Manuscript

He has begun reading the manuscript and the feedback has been minimal. I asked him about it the other day and his response was, "Well I read it and then this and that happens and I go on and then that's it." Translation: I find it difficult to hold on to what I read long enough to be able to talk about it at a later date."

The other day he did bring the manuscript in to me while I was working at my computer and pointed to a section saying, "This part is brilliant!" It was about my learning to not press for facts and/or more information from him if it didn't really matter." Interesting that he found this part interesting.

A little while later he laughed and I asked what he was laughing about. He read the following passage, "How can he be so normal at times and so confused at others." He appreciated the irony in the statement.

I have asked him if he has found the reading difficult and he says it hasn't. He says that at times it is painful but at other times joyful. He apologized for "all the pain he causes me" and I told him that love and pain go hand in hand, that I gladly accept being there for him no matter the pain, and that I love him more than ever. We hugged.

How Bad is Bad? How Hard is Hard? How Difficult is Difficult?

I find that knowing it's only going to get harder used to upset me but now, like so many other understandings, I have come to expect it. This means that it is not quite as difficult to deal with.


I met a neighbor on the elevator who asked after Gregory, I told her a little about how he is doing and ended with the usual "but we cope." She succinctly replied, "Well life is like a card game, isn't it? After you are dealt a hand you have to fold or keep playing. The choice seems obvious!"

Lately Gregory is answering questions but the answers are wrong. Or maybe the questions are wrong? Either way it is getting harder and harder to communicate using language, his or mine. M-"Did you do the waters for bedtime?" G-"Yes." But they were not done. M-"Do you need to take your pills?" G-"No." But they were still in the pill box. G-"Auntie Elaine is in." M-"Did she call or is she in town?" G-"I don't know." M-"Then what told you that Elaine is in?" G-"I can't remember."


After having lost his keys a few times, I purchased a key chain for him that gets attached to a belt loop and is long enough so the keys can be tucked in a pocket but also be taken out to open the door without having to detach the chain. He hasn't figured out how to attach the chain to his pants or how to use it yet. Just the fact that the keys are on a new chain has, in his mind, caused the keys to become something different.

One-Up-Man-Ship

Gregory and I were at Old Orchard today to run a few errands. I wanted a new black brief case to match my "artist in black wardrobe" for the team planning meetings of Michael's Museum at The Chicago Children's Museum on Navy Pier. I also needed a new charger for my iPhone and as any Appleophile knows, visiting the Apple Store is always a treat even if you do not need to buy anything. I also thought that it would be nice to have a few new shirts for the fall/winter season.

Still a fan of Ralph Lauren, we stopped in Macy's to see their selection of Polo shirts. I am in love with long sleeve Chambray, oxford cloth solids or flannel plaids. I guess I am still a "Polo Mystique" kind of guy. When I was teaching my "costume" consisted of one of a number of pair of kaki's hanging in a row in my closet and a Ralph Lauren flannel or Chambray or oxford cloth shirt.

My costume was so predictable that one year, to help celebrate my birthday, my students planned a party for me. Every one of them, with paper mustache attached under their nose, wore kaki slacks and a plaid flannel shirt. When my colleagues gave me a retirement party, all the teachers wore kakis and a Chambray shirt.

So there Gregory and I were in the dressing room and I was trying on shirts. Sadly to say, while I do worship that temple which is the body I live in, I have progressed from an XL to an XXL size shirt. I tried on a shirt and looking at myself in the mirror commented outloud, "God, I hate how big my belly is!"

This was where Gregory was able to one-up-manship me. He replied, "Well you have your problem (my stomach) and I have mine (Alzheimer.") We both got so tickled that we couldn't stop laughing. Marilyn, our sales lady (of the last thirty years or so) came through the open dressing room door to see what fun she was missing.

If You Go Away

I mentioned in a previous BLOG that every now and then I find a song that I add to “Michael’s Down” playlist on my iTunes. When I get depressed or down enough to need a really good cry, I turn up the speakers and play the tunes on my playlist. Usually feel better after a good cry. 


I was driving on the Edens Expressway, on my way to the dentist, when this one came on. Not easy to drive at 55 mph, through tears. I have adapted the lyrics to apply to "Living with Alzheimer's." The changes reflect the nature of the disease which causes the person afflicted to have good days and difficult days as he slowly disappears and the need to make each day count.

IF WHEN YOU GO AWAY (Ne Me Quitte Pas) 
(Jacques Brel / Rod McKuen)
As sung by Shirley Horn


If when you go away on this summer day
Then you might as well take the sun away
All the birds that flew in the summer sky
When our love was new and our hearts were high
When the day was young, and the night was long
And the moon stood still for the nightbird's song
if when you go away, if when you go away, if when you go away


But if when you stay, you're here I'll make you a day
Like no day has been or will be again
We'll sail the sun, we'll ride on the rain
We'll talk to the trees and worship the wind
Then if  when you go, I'll understand
Leave me just enough love to fill up my hand
if When you go away, if when you go away, if when you go away


if When you go away, as I know you will
You must tell the world to stop turning 'til
You return again, if you ever do
For what good is love without loving having you?
Can I tell you now, as you turn to go
I'll be dying slowly 'til the next hello?
if When you go away, if when you go away, if when you go away


But if when you stay you're here I'll make you a night
Like no night has been or will be again
I'll sail on your smile, I'll ride on your touch
I'll talk to your eyes that I love so much
But if when you go, go! I won't cry
Though the good is gone from the word goodbye
if When you go away, if when you go away, if when you go away


if When you go away, as I know you must
There'll be nothing left in the world to trust
Just an empty room, full of empty space
Like the empty look I see on your face
I'd have been the shadow of your shadow
If I thought it might have kept me by your side
if When you go away, if when you go away, if when you go away

Yom Kippur

Break the fast: gefilte fish, chicken soup w/ matzo ball, brisket w/gravy, kishka, peas, Mogen Davis concord grape wine, kugle for dessert.

Our prayer for the new year, "It only shouldn't get too much worse."

May you be sealed in the Book of LIfe for Love, Health, and Joy.

Judith Fox, Photographer

HER PHOTOGRAPHY:

“Her camera records not just faces and places, but moments, expressions, relationships, gestures, and meanings as well. The art of the photograph—an art she continues to feel so deeply—is that it can capture the emotion as well as the form. Of the millions of photographs that families take of their loved ones who face this unkind fate, how many are capable of completing the equation and transmitting their feelings of loss and fear and despair in the way that Judith’s images do, time and time again? Photographers return from battlefields and natural disasters with images of casualties and destruction often. But how many of them take us beyond and through the physical destruction and have us feel the devastation to the heart and soul as well. Such is the power of Judith’s view into Ed’s heart as well as her own.” —Roy L. Flukinger, Ransom Humanities Research Center, University of Texas.

HER POETRY:

“Our stories ground us.
We select them, we edit them,
and we tell them to others
in order to explain ourselves.
Ed is losing his story.

Once Ed and I started living with Alzheimer’s,
we began a trip down a never-ending staircase.
Here and there we’ve found a platform
and rested for a while.
Then there was another step down.
And another.
Right now Ed and I are tumbling feet-over-head.
No platforms in sight.
A nightmare.

No matter where Ed lives in this world,
he will never again feel at home.
The floors have collapsed, the ceilings have opened,
the walls buckled.
Our house can no longer be counted upon
to give him stable shelter and protection.”

HER CURRENT EXHIBITION:

Southeast Museum of Photography

HER SITE:

http://www.judithfox.com

A New Theory

I have seen again in the press, a new theory that has been circulating about the cause of Alzheimer's Disease. The good news is that if one knows what causes a disease, finding a cure could be the next step (however many years down the road.)


With incorrect understandings it is like trying to cure indigestion with a cold compress to the head. The problem has nothing to do with the attempted cure so its pretty obvious that a cold compress to the head will not cure indigestion. The headache might get better but the indigestion will not. Same with Alzheimer's.


The controversial new theory is that the brain is not destroyed by sticky plaques but by free-floating clumps of protein. The plaques that surround the brain cells of people with Alzheimer's might in fact be trying to protect against the toxic clumps. M.D. Sam Gandy's metaphor for the new thinking is that just as an oyster creates a pearl around a grain of sand to protest itself, plaques may serve as traps for the oligomers that are attacking the brain.


Further implications, if this new theory is correct, have to do with the current drug treatments which attempt to destroy the plaques leaving the toxic proteins behind. This could make the situation worse.


Rudolph Tanzi, director of the Genetics and Aging Research Unit at Massachusetts General HOspital says "The best drugs are yet to come." Here's hoping!


(Idea for this blog taken from AARP Bulletin, September 2010.)

Surprise Interactions

I used to call these "Slaps in the Face" but now call them "Surprise Interactions." I am referring to incidents between Gregory and myself that serve to remind me that Alzheimer's is the path we are walking. Enough of the time our life seems normal, so when a SI takes place I respond normally. I wish I could just respond calmly, softly, respectfully instead of with anger, a loud voice, assuming he is stupid. There it is, honest but true. Does that make me a bad person? No, just a work in progress with the rules changing hourly, daily, sometimes by the minute. I continue to improve and am much better than I used to be. Good me. Good me. Good boy.


I asked him to take out the "yuck" which has come to refer by mutual agreement to the "dirty garbage" or all that is not recyclable. It also includes the garbage pails in the two bathrooms and the pail in which we toss zip-locked kitty litter waste. From Gregory's point of view, I can understand how complicated all of this must be. 


Usually he knows what to do but just now when I asked him to "Take out the YUCK" he didn't know what I was asking. I reiterated the above information and he stood there, as if in a daze, confused. If I give him all of the information at one time he cannot focus. If I give one piece of the information and wait until he understands and executes the information he waits to hear all of the information. Sometimes he responds as if to say, "Why are you treating me like I am stupid?"


If I get frustrated and explain the difference between one part directions and multi part directions but then he forgets everything we discussed previously. This is usually when I "blow." 


We are having company over for lunch. I just finished setting up the buffet, preparing the food, washing up afterwards. I asked him to "Polish the counter" as I placed the paper towel and granite polish in front of him. Maybe he wasn't listening but he proceeded to get the sponge, rinse it out, and wipe down the counter. I stopped him and explained that he only needed to "Polish." His mildly angry response was, "I usually get it right don't I?" To which I responded, "Yes you do but I get frustrated because I asked and showed you what needed to be done and you proceeded to go off in your own direction."


I put a kitchen town down in front of him and asked, "Please get a clean one." He didn't know what to do. I repeated, "Please get a clean towel." "Oh," he responded, "I didn't hear the word towel." Last time I asked for a new towel, I got a bathroom towel because I didn't say "kitchen" even though I handed him the dirty kitchen towel.


So I guess that lessons come in strange ways when you need them. After these several incidents, in which I wasn't at my best but also wasn't at my worst, I turned over one of my daily affirmation cards from Wayne Dyer. It said, "Let go of your ego's need to be right. When you're in the middle of an argument, ask yourself: Do I want to be right or be happy? When you choose the joyous, loving, spiritual mode, your connection to intention is strengthened. I think this applies to today's SIs but will have to think about how it applies to use on the "path."

Difficult Decisons

Difficult decisions. I asked Gregory if he wanted to read my manuscript. This is the 140 page manuscript of my memoirs (if I can be so pompous to use that term) about Gregory and my experiences over the last seven years since his diagnosis of Early Onset Alzheimer's Disease. It has been sent to LaChance Publishing per their request to see my work.


There is nothing in the essays, observations, comments, dream descriptions, or poetry that Gregory does not know about but very often Alzheimer's "protects" the recipient with a buffer from remembering many of the difficulties and changes that take place over time. Also, I freely share my thoughts and feelings in my writings, many of which I do not share with Gregory not wanting him to needlessly feel sad because I feel sad.


Since the story is also his, how could I not at least ask him if he wanted to read it. And he chose to. In fact he is sitting at the kitchen counter, with a cup of coffee, reading it as I type this. I'll let you know how it goes. Meanwhile, please take a minute to leave a comment. It doesn't have to be anything special, just let me know that you have been here. Comment information is at the top of the blog and colored lavender. Thanks.