On Vacation

Time to get up. I stay in bed a little longer because he usually takes about a half an hour to get his bathrooming completed.

He comes back to say, I need help with knobs and things.

You’re not taking a shower now are you? 

No. I need light.

Why don’t you go back and try to figure out how to turn the light on by yourself?

He gets mad. Fuck You! (I think this is a first.) Why are you treating me like this? He goes back into the bathroom, no light, and sits on the toilet to move his bowels. 

Hate talking about this as I have always said that one one way to stay young is to never to talk about your bowels and here I am talking about bowels … well at least not my own. Lately he has begun to forget, while sitting on the pot, if he wee’ed, if he went, if he wiped.

Finally I show him how to turn on the light. Mention that he seems to be at an all time low. Say I hate treating him like an invalid. Say that after four days in the same hotel room I would think he would know how to turn on the light. Say that I can help him brush his teeth if he would like.

He spends an inordinate amount of time showering (after I got the water running,) brushing his teeth, cleaning up. He isn’t able to see the deodorant which is on the counter in front of him. He looks at the travel soap dish and wonders aloud where the top is, until he taps it and realizes that the lid is on, it’s just clear. He is not sure where to rehang his wash cloth.

I help him select his clothes and suggest a few times how to dress. You might want to put your pants on before your shoes. I continue typing a blog avoiding dispair when sitting on the side of the bed he comments, “You know … I think … it has to do … with … fear … or something. 

Of course I melt. I see he is near tears and go over to him and hug him close. He begins to cry. I sing-song to him, “You have nothing to fear. I am here to protect you. I will never let anything happen to you. I will take care of you. But I WILL challenge you now and then and I won’t always be nice to you. And we laugh. And the crisis has passed for both of us. And he says he isn’t afraid anymore. And I hold back tears through most of breakfast. 

My thinking is that he may have been afraid of being in a strange place or at having such problems with everyday activities but I suspect that his fear was at angering me, causing me to be upset, and possibly fearing loss of my love. Perhaps it was fear, very much like a child’s fear when he has upset a parent, of  having love withdrawn as punishment.

Which caused me to be upset. I’ll try harder. This vacation so far has not proved to be a vacation, at least not for me. Welcome to Circle World.

Carrots

Now that I have posted about the good things, I'll share with you the most recent "explosion."

• • •

Gregory arrived at the bedroom door, where I was working at my computer. He couldn't tell me what he wanted to tell me. He finally said, "Can I show you something?"

Back in the kitchen where he was making his lunch, he pointed at the salad drawer which was sitting on the counter. "Do you notice what's missing?" He said this is a way that felt like because something was missing he couldn't go on with making his lunch. I went into my problem solving mode (probably a mistake.)

"Nothing is missing." I said.

"Yes."

"No." At least nothing that would prevent him from continuing his lunch preparation.

"Yes."

I got more basic. "You mean there are no carrots?" Everything else was there but the carrots.

"No."

"Then what. The only thing we are out of is carrots."

"Yes. Carrots."

"But you just said 'No." OK. And why are you telling me this? So I can put the on the grocery list?"

"No."

"Is the fact there there are no carrots stopping you from making lunch?"

"No,"

"Then why are you telling me about this?"

SILENCE

"Is it because you want me to put them on the grocery list?" Repeated.

"No."

"Then what do you want me to do?" Repeated.

SILENCE

I walked over to the cabinet where we keep the grocery list and showed him. "Do you want me to put them on the list?

"Yes. I guess." I didn't dare ask what he meant by I guess since we had had such difficulty traveling so far as it was.

I, stupidly and knowing better, then continued to review all the gives and takes, pushes and pulls, yes's and no's that got us to that point and ended by saying, "And you probably haven't followed anything I've just said and why do I go on?"

"I'm sorry."

"It's not your fault." Then why do I carry on. Sometimes these exchanges, communications or lack there-of just get rolling and can't stop. I am trying to be better. I want to be better. I wish I was better. And then I feel like shit!

You'll Know

You'll know that things are not going well when you find many posts here. It is a way for me to process and put to rest, at least for a brief while before the next one, the injuries sustained by the most recent explosion.

Perhaps I should try to write about the good things that happen.

Like Gregory just having brought me half a pear (the other half for his lunch) sliced and beautifully arranged on a plate.

Or the fact that this time when folding the underwear, he got his size and my size correctly into different piles. In the past I have found myself unwittingly trying to fit myself into his underpants which were neatly folded into my drawer. Not a pretty sight if you know how slender he is and how ample I am.

Or how he tells me every night before we drift off to sleep how much he loves me.

For these things I am grateful.

Happy Valentine's Day

Happy Valentine's Day to my BLOG readers:

Happy Valentine's Day: The Results

So today we celebrated Valentine's Day over breakfast. G opened his card, and his dozen long stem red roses, and his photography book, and his chocolates. It gave me great joy getting all those traditional things of love for him.

He was so pleased to hand me the card he purchased for me, details of which were included in yesterday's post. It meant a lot to me that he remembered and I was pleased to help him follow through with his remembering. Below is a picture of the card.

Covert analysis: Unusual card. Not of the type he would usually get for me. Not really romantic. Since he couldn't sign his name and at my suggestion to draw something he added what looks like tears? blood dripping for the heart? who knows?

Overt analysis: So pleased. Hugged him and thanked him. Sat down together to look through the photography book that "we bought for each other" and even thought it was still morning, broke into the candy "we bought for each other."

Reality analysis: Honestly pleased.  He did the best he could. He expressed his love for me. He felt good about the exchange and therefore so did I. HAPPY VALENTINE'S DAY.

Tonight we go to a fancy restaurant for dinner then to see "Midsummer's Night Dream" at the Shakespeare Theater on Navy Pier.

Happy Valentine's Day

Yesterday Gregory urgently needed to tell me, "I don't...." Then he put his hands in the shape of a Valentine "...have one for you."

"We can stop in at Barnes and Nobel and you can buy one for me." I replied, pleased that he knew Valentine's Day was not too far off.

Tonight on our way home from dinner with friends we stopped in at B&N and I pointed him towards the Valentine's Department saying, "Go pick out one for me, I'll pay for it, and I promise I won't peek."

I was looking at books when he came up to me and said, "I think I found one but there is a problem."

"Show me, and I won't peek." He showed me a display card but there were no extras available. I explained the situation and pointed him towards another rack of cards. "You'll have to find another one you like."

He found one he liked, gave it to me (I didn't peek) and I paid for it asking the cashier to put it into the envelope without my seeing it.

We got home. I gave the card to Gregory and through no more about it. I was at my computer doing some writing and five or ten minutes later asked into the living room, "Are you doing OK?"

"No." came the reply. I went to see what the matter was. Gregory had been sitting at his desk, red envelope in hand, "I don't know what to do."

"Well take the card out of the envelope. I won't peek." He did so. "Now open the card." He did so. "And sign your name on it."

"That's not easy, I can't write."

Thinking fast on my feet, I gave him his pencil holder full of colored pencils (all the while not peeking) and said, "Well then draw me a picture." Which he did, put it in the envelope without help, and sealed it. "How did that go?"

"You know," he realized, "I don't think I can write anymore."

"Well, that's OK, you can tell me and I'll write for you." He liked that.

Now comes the difficult part for me, waiting to see what the card looks like. Last March when he proudly gave me my birthday card, it showed two bears in adjoining rockers, holding hands, but the card wished me a Happy Easter. It certainly was the thought that mattered, although I felt sad.

The Journey

This was shared with me by my friend Pat Anderson. It resonates!

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.

I Love My mouse

This is the third of three postings about the recent possibility of using a skin cancer drug to help reverse Alzheimer's.

I have nick named Gregory (if only in my mind,) MOUSE.

On one hand it reminds me of the adorable, yet complex character in the "Tales of the City" by Amistad Maupin.

It also is a quick way to keep awareness of what it must be like to experience what Gregory is going through based on the above study's mouse's inability to do something as innate, and simple as building a nest.

Mouse. My little mouse.

For more than three decades, Armistead Maupin’s Tales of the Cityhas blazed its own trail through popular culture—from a groundbreaking newspaper serial to a classic novel, to a television event that entranced millions around the world. The first of six novels about the denizens of the mythic apartment house at 28 Barbary Lane, Tales is both a sparkling comedy of manners and an indelible portrait of an era that changed forever the way we live.

Se La Vie & Bienvenido

Se La Vie & Bienvenido
(This is the life (in French) and welcome to it (in Spanish.)

Last night, just before bedtime,
as we were having a Cheerios snack,
Gregory had the jug of milk in one hand,
his cereal bowl on the counter, and
he was stumped about what to do next.

This morning, making his breakfast,
as I was making my coffee,
Gregory had the electric tea pot in one hand,
his tea mug in the other, and
he was stumped about what to do next.

Our life,
many times a day, hour, or minute,
Gregory on the one hand,
me on the other, and
we are often stumped about what to do next.

New Hope for Mice

This photograph was part of the Wall Street Journal article which I just posted. I was reading the article on my iPad (which is a new behavior for me) and when I flicked to the next page there was a full life picture of these mice who were part of the study. It compares normal mouse nest building behaviors and Alzheimer's Mouse nest building inabilities. The final picture shows the Alz Mouse, after the "miracle drug," being better able to build his nest. 

Just looking at the photographs and reading through the captions brought me to sobbing. I was so sad for the mouse but seeing the obvious loss in the mouse'a ability to accomplish something so innate, simple yet crucial like nest building brought home what Gregory goes through on a daily, if not hourly basis. 

I will be better in my support of him.

New Hope

Woa! It has been along time since I posted. Partly because we are getting ready to visit family & friends in TX and then on to MX for a month. I am sure I'll do a lot more posting then. Meanwhile, this article in the Wall Street Journal caught my attention. Very interesting. Will do a follow up post on the image of the mice.

• HEALTH & WELLNESS
• FEBRUARY 10, 2012

New Attack on Alzheimer's

Cancer Drug Reverses Disease's Symptoms in Mice; Human Tests to Start Soon

By GAUTAM NAIK

A cancer drug quickly and dramatically improved brain function and social ability and restored the sense of smell in mice bred with a form of Alzheimer's disease, suggesting a new way to tackle the illness in people.

Alzheimer's is associated with the accumulation of protein fragments called amyloid-beta in the brain. The new research found that an existing skin-cancer drug called bexarotene cleared the protein in the brains of stricken mice within days. The study was published Thursday in the journal Science.

A skin-cancer drug has shown some success in treating Alzheimer's disease in mice, according to a study in Science. Stefanie Ilgenfritz has details on The News Hub.

Because bexarotene is known to be safe for treating skin cancer, "it might be worth trying in Alzheimer's patients as well," said Rada Koldamova, a neuroscientist who works on Alzheimer's at the University of Pittsburgh and wasn't involved in the study. However, she added, the drug's effectiveness against the brain malady would first have to be established in human trials. Test results in mice often don't pan out in humans.

Everyone's brain produces amyloid-beta protein, but while a healthy brain can efficiently remove the protein fragments, the brain of a person with Alzheimer's can't. The resulting buildup is believed to result in impaired learning and memory functions.

The disease is a growing problem, especially in aging societies, but no effective treatment has been found. The drugs used today work just for a short time and only relieve symptoms, instead of halting the disease. Over the years, drugs in about a half-dozen late-stage human trials have failed to make the cut.

In 2010, Eli Lilly & Co. abandoned a treatment that blocked an enzyme linked to amyloid formation after the drug appeared to worsen some patients' condition. Another technique, currently being tested in patients, is to reduce protein formation by triggering an immune response.

The new research, funded by a number of foundations, takes a completely different approach, said Gary Landreth, a neuroscientist at Case Western Reserve University in Cleveland and a co-author of the study. His team's method, he said, is to "help Mother Nature do what she normally does" in clearing amyloid fragments from the brain.

Scientists know that a protein called ApoE acts as a sort of garbage-disposal unit, helping to degrade amyloid-beta proteins. Dr. Landreth figured that if he could get the brain to make more ApoE, the protein clearance would be enhanced.

He set his sights on bexarotene, an orally administered drug known to activate a protein that helps switch on the ApoE gene. In 2009, Dr. Landreth asked a newly minted postgraduate student in his lab to give the drug to some "Alzheimer mice." Three days later, the amyloid plaques in their brains had largely disappeared.

"It was unprecedented," Dr. Landreth recalled. "I initially thought she had screwed up."

In the Science report, Dr. Landreth and his colleagues describe similar tests done with over 100 mice. When the drug was fed to mice with Alzheimer-like symptoms, it quickly improved their cognitive, social and olfactory functions. Losing the sense of smell, a disorienting and often debilitating experience, can be one of the first signs of Alzheimer's in humans.

Healthy mice typically will gather tissue paper strewn around their cage and use it to make a nest. Alzheimer mice stop doing that. When the drug was given to diseased mice they made nests, a sign of cognitive improvement. The benefits lasted up to three months, at which stage the scientists stopped their observations because that was sufficient time to show the drug's effects weren't transitory.

It is widely believed that the memory problems seen in the affected mice and human Alzheimer patients are caused by small soluble forms of amyloid beta. The researchers found that within a mere six hours of getting the drug, soluble amyloid levels had dropped by 25%. This effect lasted for three days.

In the U.S., bexarotene is sold under the name Targretin, which is owned and marketed by Japan's Eisai Co. Patents on the drug—and hence its profitability—will start to expire this year, one reason drug companies may be reluctant to jump on bexarotene as a possible Alzheimer's treatment.

Dr. Landreth and a study co-author, Paige Cramer, are founding scientists of ReXceptor Inc., which has licensing options from Case Western to use bexarotene to treat Alzheimer's disease.

Bexarotene is a long way from being an approved Alzheimer's drug, or even being deemed ready for off-label use—when a doctor legally prescribes a drug for an unapproved use. As a first step, Dr. Landreth plans to start a safety trial in a dozen patients in the next few weeks.

He needs to figure out the right dose and duration of the treatment for prospective Alzheimer's patients, and judge the effects over several months. If all goes well, he hopes to engineer a version of the medicine that is more potent and works at a lower dose, to minimize any side effects.

Carl Wagner, an organic chemist at Arizona State University who is collaborating with Dr. Landreth on the project, said he had synthesized half a dozen such versions and was testing them.

Write to Gautam Naik at gautam.naik@wsj.com

Copyright 2012 Dow Jones & Company, Inc. All Rights Reserved

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Iron Lady Continued

Chatted with G after dinner about "The Iron Lady" but not really sure he realized until I mentioned it that Margaret Thatcher has Alzheimer's Disease. The movie, however, really affected him. (I think the movie and Ms. Streep did a really good job of portraying what it is like to live with the BIG A.)

In the past (B.A. = Before Alzheimer's) when he got really involved in a "heavy" movie he would be distracted and "lost in it" for a while after (hours at least.) This time his distraction via Alzheimer's showed up during dinner when he didn't know how to cut the peach in his peaches and cottage cheese, started to pull it apart with his fingers, so I cut up his food for him. He was quite confused between his knife and spoon, when he did figure out that the knife was to spread jam on his English muffin he did not really understand the principal of how a knife carries the jam and spreads it.

After his muffin was gone, he loaded up his knife with more jam, "Where am I supposed to put this?" he asked. "Back in the jar," I replied, "you have no more muffin to put it on."

He was aware of how confused he was and (in his few-ly worded way) recognized "How I am after a movie."

The Iron Lady (CAUTION: Movie Spoiler)

Today Gregory and I went to see The Iron Lady, a movie about Margaret Thatcher who is played by Meryl Streep. After seeing Ms. Streep in Julia and Julie, I knew we had to see this one. Miss Streep is one of THE actors of our time.

Early in the movie I realized that part of telling Ms. Thatcher's story is that she, at 82, suffers from dementia which has been labeled Alzheimer's Disease. Totally unprepared. So you can imagine I cried through a lot of the movie. Not sure how Gregory felt about it. Maybe we'll discuss it in a little while over dinner. Then again, why ruin a good meal. Maybe before bedtime. Then again, why ruin a good night's sleep?

Below is the link to an article I found on the internet which talks about Ms. Thatcher's daughter and her autobiography.

Click here to go to Mary Kenny's article.

Where do I take my numbness?

Maybe I am exaggerating but it is as if he cannot. anymore, name or recognize most words. When he needs something he has to show me because he cannot name it. When referring to something I have to play guessing games. Usually, I eventually guess what he needs but not without having to cover my pain. When I name an item, he doesn't necessarily know what I am talking about. For sure he has lost up, down, behind, in front of, on, in, etc. So much for most communication.

Just now he brought me a piece of lunch meat so I could smell if it was OK. Glad he remembered to do that rather than just eating it.

It was spoiled so I said, "It is spoiled. Throw it away and then wash your hands." I heard the cabinet door to the trash open and close but I did not hear him wash his hands. I questioned. "Did you wash your hands?"

"I did," he said.

I saw that he had not. "I don't think you did, please wash your hands."

He did not know what to do. He repeated, "Wash your hands." several times but did not know what to do. I had to show him.

"Oh that."

When I ask to see his wallet and he gives me his cell phone. When I ask to see his cell phone, he doesn't remember where he keeps it.

When we arrive somewhere and take off our coats, he doesn't know where to put his hat and gloves. When I remind him, he does not know how to get into the coat pocket. Often when something is in a pocket, he does not know how to retrieve it.

More and more, after drying dishes after dinner, he does not know where they belong.

He forgets how to use his knife and fork so uses his fingers more often. If there are two forks, as at the restaurant, he gets really confused.

When gathering his clothes for the morning he took only one sock. When I showed him, he didn't know what was wrong with the picture.

He put his reading glasses on the bed while he took his pills, then got under the covers and couldn't find the glasses, which had been pushed down under the pillow. I didn't know this but in the morning found his glasses at the bottom of the bed.

And other times, everything still seems normal.

This happens almost all the time now. I have such a difficult time living in his world. I am numb. Where do I take my numbness?

Michael

Last night Gregory forgot my name.

The Poetry of Alzheimer's

Alzheimers, like poetry, is about words.
Letters combined into words into sentences,
Making up thoughts, and ideas and stories.

A poet searches for just the right word,
To convey meaning, experience, emotions
The essence of the things of life are told.

A person with dementia searches as well,
Through the emptiness, confusion and fear,
Trying to express the simplest of ideas.

At times the poet is can be articulate,
And often times beautifully lyrical,
But always in control of his words.

The person with dementia can be articulate
But at times cannot express himself at all
And over time the control of words escapes.

Daily Word

About Daily Word | Pray | Affirmations | Articles | Search Archives | Subscribe | Shop | Donate Tuesday, January 10, 2012 TRANSITION I move forward through change. While change is inevitable, my response or reaction to change is up to me. How can I best prepare myself for change, and how can I make the most of it? Change is a transition from one thing, one place, one state of mind to another. I am evolving from what was to what is. I am becoming more than I was before. Just as my view changed as I transitioned from childhood to adulthood, I now see that I am gaining a new perspective during this transition. I may be stepping into unfamiliar territory, but this step is an opportunity to grow in spiritual awareness. With each shift or change in my life, I am moving forward. When I was a child, I spoke like a child, I thought like a child ...; when I became an adult, I put an end to childish ways.--1 Corinthians 13:11

Death Hangs Heavy

On December 31, two days ago, we received a call from Gregory's niece Renee telling us that Mark, Gregory's brother, had suffered a major stroke and that only time would tell if he survived it or not. This after many over the years "resetting the heart" procedures, watching his weight, putting in a pace maker, removing the pacemaker in favor of a machine that basically ran his heart full time.

It brings a heaviness to the air that one cannot completely describe and that is yours to carry around during your day to day activities of living. You continue to live as he possibly continues to die. It reminds you of your own fragility as well as your continued strength. You feel a sense of sadness and fear yet numbed versions. Did I say a sense of helplessness. Pray? Not sure how that helps. Hold positive healing thoughts, sounds better to me.

So we continue to wait and hope try not to notice that shadow following us around the house.

                Unaware By: Michael A. Horvich (2010)

There is a fear

That lurks just behind

The awareness of your thinking

Hiding

The next moment

Will not be like this moment

Or the one before

Different

And with a comment

Or the ring of a phone

All will change

Forever

Never Better

In a previous post, I talked about a down and out, alcoholic dishwasher that worked temporarily at Jerome's Restaurant (no longer open) some thirty years or so ago when I waited tables and tended bar, who when asked on arriving for my shift, "How are you doing?" always replied, "Never better!." Now that is optimism.

In a previous post, I may have talked about a call Gregory received from his mother (now deceased) asking, "What is the definition of an optimist?" with the answer "An eighty year old couple who are building a new house!" as a way of announcing their move back to Goshen, Indiana from Florida and buying a house that was newly under construction.

An update on this matter of optimism comes at a meeting Gregory and I had with our lawyer to bring up to date our five year old trust, wills, powers of attorney etc; when Gregory brought Janna up to date on his situation by saying, "You know ... this Alzheimer's thing ... It isn't ... causing ... really any problems."

Bless the Dementia Buffer!

Negative Thoughts

Life seems a facade.

Truth hidden and frail.

Each day more sadness 

Covered by my smiling veil.

What of optimism

Or of thoughts attracting thought?

Might it  be just a sham of hope 

That really serves for naught?

Even Love is not as strong

A cure-all as it used to be.

I wake with the sun, and begin again

Despair following me.