PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Thursday, March 31, 2011

A Dream 03/31/11

There was some kind of catastrophic disaster. Fire was all around. Then there was an explosion or fire and light and on the other side life had changed. Many people including myself were burned beyond recognition but we were alive and functioning. New ways of doing thing had to be developed because people could barely move. A new language formed because people could barely talk. The interesting part is that this was NOT a nightmare. There was no pain, no fear, no depression, no anxiety. People just continued doing the best they could living their lives. Do you see a parallel with being a caregiver for or the person afflicted with Alzheimer's? I do. I also see that something that could have been a catastrophe ended up reflecting the ability of human nature to rise to the occasion.

Tuesday, March 29, 2011

Why is it?

Why is it that I still have expectatons? Why is it that I still think he can learn? Why is it that I am surprised when he doesn't make connections? Why is it that I still ask him to do things to help me? Why is it that I still reason with him. Why is it that I still discuss things with him? Why is it that I still get angry and frustrated with him?

I guess because it is a measure of my respect for the person he was and is. Should I treat him like an idiot? Should I treat him like a child? Should I treat him as though he doesn't exist, or matter, or have emotions? I don't think I could do that.

So I just have to remind myself that when he doesn't meet my expectations, when he can't learn, when he can't make connections, when he can't help, when he can't be reasoned with ... I need to not get angry or frustrated ... just be patient and compassionate. The choice is mine.

Thursday, March 24, 2011


The green plants are always there,
Sitting on the bedroom bookcase top,
With several other items of interest.

Nothing needs be done,
No decisions made,
It always remains the same.

The living room window sill,
Sports in a row - Buddha, Ganesh,
An African Protection Fetish.

Nothing needs be done.
No decisions made.
It always remains the same.

Each night at bedtime they are tapped lovingly,
One by one in his concentrated way,
Counting on at least one predictable, familiar experience.

Wednesday, March 23, 2011


Tonight he forgot how to put body lotion onto his hand. It hovered above the pump, retreated, approached, retreated, approached. Finally he figured it out.

After reading for awhile, he put his book down on the night table, picked up the case for his reading glasses, opened it, closed it, then realized he still had his reading glasses in his hand. He corrected the situation in silence. Unnoticed I watched.

He fluffed his pillow, laid down, said goodnight to the plants on the bookcase, and turned off the lamp. Some solace in that I guess.

Tuesday, March 22, 2011

When Teaching and Learning No Longer Work

What happens when teaching and learning no longer work? Think about that one!

Monday, March 21, 2011

Letting Go

After the events, probably usual events, of going to bed this evening upset me I went into the closet, no lights, and cried, no longer productive nor comforting to cry in the arms of my love. And as I cried and realized why I was upset, I whispered over and over, "It is so hard to let go. It is so hard to let go. It is so hard to let go."

Then my mind said to me, "There is power in words. If you say it is hard then it will be hard!"

So I started chanting, "I am letting go. I am letting go. I am letting go." And as I chanted I became more in touch with my emotions, cried harder, cried tears, cried grief.

Maybe I can tell myself to "let go" before I get upset ... "but is is so hard." Maybe that is a good compromise, "I am letting go and it is hard."

Mary's Mother

Received this lovely e-mail this morning and wanted to share it with you.

I learned to meet my mother, brand new, every time I saw her.... I was always thankful she wasn't in pain and didn't know sorrow... She was like a child. She even forgot that she was once petrified of dogs... how wonderful that she forgot that horror. She did not suffer, she just didn't remember things. Her mental buffers were no longer full, overflowing with useless trivia, data, "to do" lists and reminders. She marveled at life, and loved watching finches fluttering around the bird feeder in the back yard. Her life became simpler each day. I often envied that simplicity and sometimes wish I were so lucky.

I love your sweet blogs. Thanks for sharing your journey.
Aloha from Kauai

Wednesday, March 16, 2011

The Journey

This poem was shared with me by my friend Pat. I agree with her comment: "It makes me feel a little breathless."

The Journey

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

Monday, March 14, 2011

Only Two

Gregory and I had a long conversation today.

It was good for me, I am not sure how much of it he was able to follow. But my belief is still that I have two choices when things go wrong: 1) Pretend that nothing is wrong or 2) Discuss it with him.

He always chooses the later when offered the choice so I continue to discuss it with him when things go wrong. Most often the steps are too many and he cannot follow the discussion but we try anyway. If it really doesn't matter, I do pretend.

After our conversation today, Gregory said that he felt bad that his problem might mean that I can no longer be away from him to do the things I like to do.

I replied, "You know there are only two times when I feel bad about our 'situation.'

One is when I loose control and get angry or short or impatient or disrespectful and the other is when you feel bad.

We laughed.

Sunday, March 13, 2011

Me or Him?

After seeing a sign on the elevator and not knowing my opera performance schedule, I said aloud, "I don't know if I will be here to go to the Condo Association meeting."

Gregory responded, "If he isn't going, I'm not going."

I smiled.

Friday, March 11, 2011

Conversing With My Love

Like the broken glass of a window pane 
His thoughts are fractured.
‘This’ doesn’t follow ‘that’
And next is nowhere to be seen.

Like flocks of sparrows
Letters organize into words
But without meaning
Without understanding.

Like prisoners escaping into the streets
Sentences break free of logic.
They no longer reach their end
And sometimes start past their beginning.

Like runners passing in leaps and bounds
Time avoids smooth ticks or tocks.
We spend our days together as they come
And as they go or as they have or haven't been.

Thursday, March 10, 2011

Just Checking In

Hi. It's been a while since I've posted so I guess you can assume that for now (how ever long that may last) things have settled down. That either means that Gregory's changes and lapses have slowed down or he has not been challenged or confused recently or it means that I have reached a new level of coping, supporting, anticipating, covering, running interference, etc.

Oh, did I mention that that last Tuesday: 1) He didn't remember how to use his key to get into condo ... but did have sense to get help from management office. 2) Because the ususal “lunch meat” in the refrigerator ran out I left him a tin of tuna for lunch but the change caused him to be totally confused about how to make lunch ... but did have sense to go out to a restaurant. and 3) He forgot how to run DVD again even though it is “one button on” and “the same button off." Then he knew how to turn off the DVD after the movie with the “one button” ... but when I complimented him, he thought he had done it all wrong and apologized.

But you know what, I remained even and that helped both of us.

Sunday, March 6, 2011

Half Full or Half Empty

Is the glass half full or half empty? At dinner, I usually drink two glasses of water and Gregory usually doesn't drink any of his. The usual routine is that I hand him my empty glass and he gets me a refill from the water tap in the refrigerator. Sometimes he asks if I want more ice.

This evening I handed him my glass and asked for "A little more ice also please." In the time it took for him to put my glass down on his place mat and finish chewing his mouthful, he forgot which glass was mine.

First he picked up his glass but when he got to the refrigerator he realized it was already full. He brought it back. Put it down. Studied the area. Then pointed at the empty glass and said, "This one must be mine." Which confused him more.

"No, mine is the empty one."

"Oh." He picked up the empty one, took it to the refrigerator, filled it half way, and returned it to me. I thanked him, not commenting on the lack of any additional ice.

Now you tell me, half full or half empty?

Saturday, March 5, 2011

A Recurring Theme

If you have been following this BLOG, or the events in Gregory and my life, you may have noticed that there seems to be a recurring theme: Expect Less, Love More.

As the disease continues to play havoc with Gregory's brain (I can actually picture the cells being destroyed one by one and the brain connections being snuffed out one by one) my learning curve and the progress of Gregory's Alzheimer's continues to present new, and different, and unexpected, and unfathomable experiences for me.

My goals are to do the best I can to keep him content, healthy, and safe. A sub-goal is to help his life be meaningful for him, to help him keep his dignity, to help keep him useful so he knows he is needed.

My goals might also include the same for me, especially keeping my mind and body healthy. I have to admit that while I know the importance of these personal goals about me, and while I do work at them, they do suffer.

As the changes continue to take place, sometimes at an accelerated rate, new levels difficulty in accomplishing my goals for him seem to come into play. For example last night there were several instances in which he was unable to follow very simple, one step directions.

They were based on easy to do (at least in my mind,) basic, up until now successful skills for him. One was to put cup cake papers in the cup cake tin. Another was to fill the dinner water glasses again for use at bedtime. A third was to pick up the cat's food for the evening.

Another example just happened as I was writing this BLOG. While he still seems able to us the computer to read his e-mail, see the day's news, and play an online game with Ken ... the computer and its use entails such a complex set of skills that he usually get confused and comes to me for help.

This time he was looking at the TRASH list of his e-mail, not today's e-mails. He was asking for my help but I didn't know how to help. The possibilities of why he needed help were so numerous that I didn't know where to begin. I didn't know how he ended up being in the TRASH. Explaining what was going on would only serve to confuse him. Asking questions to try to figure out how he got himself "cornered" only serves to confuse him more. Asking what he did just before he asked for the help is no longer part of his memory.

Last night was so frustrating that each time  I just asked him to stop helping and I took over. His feelings were hurt but I knew that if I tried to explain what was expected, or how to do what I requested, he would only get more confused and I would get more frustrated (read angry.) So I just gently said, "Never mind honey, I'll do it." But he got his feeling hurt anyway.

It was then that I realized that currently, in many things, my helping him has  become a choice between hurting his feeling less or hurting his feelings more. Let me repeat: hurting his feelings less or hurting his feelings more. Less is the obvious choice but non-the-less it hurts his feelings. So I cried.

Until now I have held the belief that in an effort to help him keep his dignity and sense of usefulness, it was worth the frustration, aggravation, and sometimes anger that I suffered when he could not follow through.

I no longer believe that it is worth my frustration, aggravaiton, and sometimes anger and especially not my emotional and physical health, when he cannot follow through.

So I will need to analyze each request for help more carefully and judge by his chance of success to determine if I even want to ask for help in the first place.

I will need to ask less, expect less, and love more. Him and myself.

He came to me to sooth my upset and said, "You can't always be perfect. Neither can I." So I cried more.

Wednesday, March 2, 2011


Amazing how the human brain works.

Amazing how the human brain doesn't work.

Gregory was beginning to get his breakfast together. I was awake so I offered to make him oatmeal. He liked the idea. I said, "Get everything else ready for your breakfast then I will make the oatmeal. Besides cereal he makes some kind of protein in the way of tinned fish or sausage, fresh fruit, and hot tea. Pretty healthy huh?

To get to the point, my offer to make him oatmeal (to be his cereal for the day,) totally got him off track. He lost all the details of what to do to make his breakfast. Forgot what to do before I made the cereal. Couldn't think about the protein, couldn't figure out the fresh fruit, put the box of tea back in the cabinet, and then stood there, confused.

I repeated, "Do everything you usually do for breakfast, but I'll do the cereal."


I took him over to the cabinet where the pictured sign is posted that shows what he needs to do each day for breakfast.


I said, "Tell you what. Forget what I said. Make your own breakfast." I put away all the makings for oatmeal. "I'm sorry I confused you. Make your own breakfast. I'll do oatmeal for both of us on another day."

"OK," he replied, "that would probably be better."

At this point in my writing I just asked him if he was back on track and he answered, "Yea."

Meanwhile I am amazed at what does (or doesn't) go on in his brain.

Tuesday, March 1, 2011

The Way We Speak Now

This piece was shared with me by my friend Pat. She said, "This is a lovely piece; I think you will enjoy it too. I am not recommending it b/c of Alzheimer’s, but just because it is evocative and strange and imaginative."

I think it is strong for anyone dealing with Alzheimer's as well. Let me know what you think.

The Way We Speak Now
by Angi Becker Stevens

art by Gay Degani
art by Gay Degani
The first word we lost was the name of that thing with the buttons, the one you speak into to talk to someone who is far away or at least not in the same room. The thing you call people with. We woke up one day and the word was just gone, no one anywhere could remember it. It even vanished from dictionaries, as far as we knew, though in all fairness no one could recall how to spell it to look it up. At first we thought it might just be a fluke, but a few days later another word went missing, this time the word for those gray strips of pavement—not roads, but the ones for walking. After a few more words had disappeared, we realized it was just going to keep on that way. There didn't seem to be any connection between the things that no longer had names; some were objects and some were places and some were feelings or foods or parts of the body. The tall things with leaves that grow out of the ground and up toward the sky, those things we get wood from. The things we put on our feet before we go outside. The joint where our legs bend. The specific emptiness we feel when we need to be fed.

Some people have had the idea to try to come up with replacements, but the new words just won't stick, as if this is not really a matter of words abandoning us, but of things that refuse to be named.

At some point we lost track of how many words have gone. There's no doubt anymore whether they have been vanishing from dictionaries as well—dictionaries are getting thinner. Other books are not getting thinner, but are merely developing empty spaces. I wonder how long it will be before they are filled with blank pages, every last one turned into a sketch pad, or a journal if there's anything left to write.

So far, we have managed to adapt. There are ways to describe almost anything. Sometimes I think about this game we used to play when I was a kid, where you tried to make your teammates guess a word without using a certain list of closely related words, like you would not be able to use the word "orange" if you were trying to make someone guess "carrot." When we lost the word for the color of the sky, I thought about how maybe playing that game was good practice. I can't remember the name of the game, but I don't think it's a vanished word. I think it's something I just forgot on my own.

The words that are gone are like hundreds of tiny phantom limbs. They feel constantly like they are on the tip of my tongue. The sensation reminds me of the way I felt during the final few months my lover and I spent together, like I always had a mouthful of words I could not form the right shape for no matter how many ways I tried to arrange my lips and my tongue and my teeth. It was like waking up on the very edge of remembering a dream, that feeling of being so goddamn close to something but still so far away it was useless, might as well have been on the other side of the universe.

Sometimes I wonder how many words have disappeared that I have not even noticed because they are words I seldom ever use. It would probably take me a long time to realize, for example, if "horticulture" or "uvula" or "bismuth" went away. Every once in a while I flip through the dictionary, just to remind myself of how much is still left.

The way we speak now: like we are always trying to explain things to visitors here who barely speak our language. We say: the clear smooth stuff that you look through to see outside if you are indoors. We say: the box with the moving pictures on it that we watch to forget real life. We say: the buildings we live in. The animals with feathers that can usually fly but sometimes cannot. The specific injury when you touch something too hot or stay too long in the sun. Sometimes I think it sounds like a kind of poetry, and other times I just think we all sound simple-minded and slow. We are all like visitors here now.

It didn't bother me when we lost the word for the metal things we ride in to get from one place to the next. But I cried when I realized we'd lost the name for the tiny dots of light you can see up in the sky in the nighttime. I can't explain why, but that was the only word I really mourned, a loss that ached like a small death.

I think about how my lover and I were always trying to find more words, as if language was the thing that could put us back together again. But maybe what we needed all along was to say less. When I think of him now, what I remember is not anything he ever said. I remember breathing into his neck, and the way I would slide my arms up inside of his jacket not for warmth but because I could never figure out how to feel close enough to him. What I felt was always a wanting—I wanted him even when I was with him, a longing lodged squarely beneath my breastbone, inside some dull-thumping muscle I used to have a name for. And I wonder sometimes what would happen now if I called him and said nothing at all, if it's possible somehow for the mere sound of my breath to release all those ghosts of words trapped inside my throat, to tell him all the things that have become unspeakable.


All content in SmokeLong Quarterly copyright 2003-2011 by its authors.

Angi Becker Stevens' stories have appeared in a variety of publications, including The Collagist, Pank, Monkeybicycle, Wigleaf, and Best of the Web 2010. She lives in Michigan and has one daughter, two partners, and a small assortment of oddly-sized pets.

Nominated for a Pushcart, Gay Degani has published in journals, anthologies, and her own collection, Pomegranate Stories. A list of her online writing can be found at Words in Place. Her artwork has been featured at Faraway Journal, 3 A.M, and Smokelong Quarterly. She’s a staff editor at SmokeLong and managing editor of EDF’s Flash Fiction Chronicles.