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.

Sunday, October 31, 2010

Happy Halloween

Trick or Treats
Money or Eats

Tricks with memory
Tricks with perception
Tricks with cognition
Tricks with learning
Tricks with behavior
Tricks with understanding
Tricks with problem solving

Trick or Treats
Money or Eats

Friday, October 29, 2010

At War

An explosion of self
A howl of despair
I turn inward
Self falls to the floor
In a crumpled heap

An interaction gone astray
No I am mistaken
It is on target
With Alzheimer’s
It always wins

The tears arrive
Dropping from the sky
Momentary relief
One moment’s worth
Until the next strike

I look to the sky in fear
There is no shelter
Only more explosions
Of self
As I seek balance

Wednesday, October 27, 2010


I just noticed that I haven't written for five days. No excuses. But there are the Carmen performances, and the Michael's Museum at The Chicago Children's Museum meetings, and socializing with friends, and running errands, and preparing meals, and watching Netflix DVDs, and getting a few hours sleep. No excuses. With the change in the weather I find it difficult to acclimate to the changing number of hours of daylight and the "warm one day cold the next" and the weather change affecting how my back aches. No excuses. NO EXCUSES! It's not that I don't care. I do. But I am tired.

Friday, October 22, 2010

I mentioned in previous BLOGs 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. Here is another one of the songs on my playlist:

All I Need To Know
By: Kenny Chesney
Sung By: Bette Middler

Look at my face. I know the years are showin'.
Look at my life. Still don't know where it's goin'.
I don't know much, but I know I love you,
and that may be all I need to know.

Look at these eyes. Oh, they never see what matters.
And look at these dreams, so beaten and so battered.
I don't know much, but I know I love you,
and that may be all I need to know.

So many questions and still no answers.
I climb and climb but never get the view.
But when I hold you near me sometimes I feel so clearly
the only truth I'll ever know is me and you.

In my heart I long for inspiration.
And in my soul I know someday I'll find salvation.
I don't know much, but I know I love you,
and that may be all I need to know.

In my heart you're my inspiration.
And in my soul I know love is our salvation.
I don't kow much, but if I know you love me,
that will be all I need to know.
I don't know much, but if you say you love me,
that will be all I need to know.

Monday, October 18, 2010

Alzheimer's & Art

It is said of Alzheimer's that new learning connections cannot take place, but with Gregory I think that he may still be working at and succeeding in making new connections while the old ones fail. Before Alzheimer's, he ran a high end architecture, historic renovation, and interior design firm. He received his MA from Harvard and was Phi Beta Kappa. He read and traveled extensively. He was active in many professional organizations and presented workshops to architectural students. He was calm, methodical, and easy going and in many ways still is. Perhaps all this accounts for the very slow decline of his abilities over the last seven years since the diagnosis of Early Onset Alzheimer's at age 55.

Enter new learning. With the help of artist Nancy Rosen (Link to Nancy Rosen's Art,) Gregory has begun oil painting and is quite good at it. He really enjoys the process and looks forward to working with Nancy in her studio as often as possible. He has said as much with, "Nancy has changed my life." He took to using oil sticks quite easily and has been very pleased with the results. In a brief period of time, he has created ten 9" x 11" and three 30" x 30" pieces. His work was part of a show of ten artists at our condo and he has sold two pieces.

The connections that I think he is rebuilding include those from his past creative nature, his eye for color, and his perception of size and shape. His work is abstract so it seems to come more from his heart than his head. As Nancy has said, "It works well because language is not necessary." He begins by studying the heavily gessoed stonehenge paper to see how the ripples, imperfections, and bumps speak to him. He then selects his color palate of oil sticks from the hundreds that Nancy has sitting around and begins work. Very often he will complete an entire piece without stepping back to contemplate it. Then he crosses the studio and looks back, most often being surprised and pleased with what he has created.

Nancy is a born artist, prolific to the level of unbelieving, and the consummate teacher. She has encouraged Gregory to experiment, has drawn him out, and has gently suggested how to approach the art of painting with oils. Her critiques are supportive, edifying, and loving. Nancy, Gregory, and I may not know much about art therapy, but I think we must be in the midst of the best of it!

Friday, October 15, 2010


One of the things that continues to disintegrate (read lose integration) is Gregory's ability to make connections. It was time for his evening coffee. He filled a coffee mug  with coffee from this morning and put it down next to the coffee maker. He went to the refrigerator, took out the milk,  and put it down on the opposite counter.

First he just stared at the milk as if trying to remember what he was doing, or how to do it. He looked back and forth, back and forth, back and forth. I sat quietly and tried to become invisible so as not to distract him. This went on for about 30 seconds which in real time isn't so long … but in Alzheimer's time seems forever. Try sitting there doing nothing for 30 seconds and see how it feels.

He next began to return the milk to the refrigerator, stopped mid-move, and put it back down on the counter. FInally, after about 15 second more, he turned to me and said, "Can you help me?"

I pointed towards the mug and said, "You need to put some milk in the coffee." Didn't register. "Open the milk." Success. "Take it over to your mug (pointing.)" Success. "Pour some milk into the mug." Success. Then the connections returned. He put the mug in the microwave, closed the door, pressed "1 minute," and waited until the signal sounded. He took the mug out of the microwave and thanked me. Success.

Other times he forgets how to pour the coffee into the mug, where to warm it up, how to run the microwave. What is amazing is that I felt no negative emotions. I was able to help him in a neutral way, didn't get upset, didn't consider him "stupid" for not remembering, didn't raise my voice, didn't dwell on what the future holds. I guess I am getting better at this.

Tuesday, October 12, 2010

The Journey

Taking the journey is what matters
Who knows what any end brings
Why worry the present to the future
While the morning dove still sings.

As long as our daily path exists
We will walk it standing together
We will go carefully step by step
Even during the difficult weather

Holding on to our deep  love
And being grateful for each other
We will live out each day of our life
As the wind ruffles the bird's feather

Saturday, October 9, 2010

Let's Try This Again

"Every Day Is A New Day" may sound trite but it is an operative slogan for me. Very often, after Gregory and I have had a difficult exchange, or hour, or day … in the next exchange, or hour, or day things will seem back to normal. Each morning I awake refreshed and  hopeful and usually the day goes well … until the next difficult exchange, or hour, or day.

Tuesday, October 5, 2010

Where Did the ESCAPE Button Go?

Interesting! In thinking about it, I realize that there was a time when I had a number of "alternatives" that I could engage in that would let me escape my world for a while. Now it seems to accompany me where ever I go and what ever I do. Why am I not able to escape for even a few minutes. Where are the alternatives? Where are the distractions? Need to think about this some more.

Monday, October 4, 2010

Sunday, October 3, 2010

Fine Thank You

Most often, when I am out running errands, I run into family, friends, neighbors, acquaintances. They always ask after Gregory. "How is Gregory doing?"

I find that I do not know how to answer or at least there is no easy answer. I am pleased that they care and I always tell Gregory, "So and So asked after you." It pleases him to know people said "Hi!"

But how to answer? I usually go into my "On a scale of horrible to horrible it is terrible … but we are doing well, adjusting, and enjoying life as much as we can. We have so much to be grateful for." I explain that Gregory is still pretty independent, goes for long walks, and swims. I give them a few examples of how the Alzheimer's plays out just so they do not think that our life is all wonderful.

Soon (fingers crossed) I'll be able to anwser by saying, "You'll have to read the book." Haven't heard from LaChance Publishers yet but then again the manuscript has only been with them for two months and that is no time at all in the publishing world. Have I mentioned my idea for the title? GYROSCOPE: An Alzheimer's Love Story. I selected the concept because a gyroscope can spin wildly out of control but keep its balance … and it is a love story. Will keep you posted.

Friday, October 1, 2010

An Observation

Yesterday, I drove to The Lyric Opera of Chicago for a Carmen rehearsal. I spent my time in the car on the phone with my good friend John H. We talked about many things and when the topic of our conversation turned to Gregory, John made an excellent observation about why Gregory may be able to deal so successfully with having Alzheimer's Disease.

For the most part Gregory continues to deal successfully with the slow loss of his mental abilities. The other day he mentioned that he missed playing the piano but was grateful for all the wonderful music we could listen to on our audio system. He gets a little frustrated when he cannot pull the words he needs to express an idea or ask a question but only a little. When asked how he is doing with the Alzheimer's, he will respond, "It is what it is."

John observed that Gregory has always been a problem solver. He does not get emotionally involved with the negativity or seeming impossibility of problems but instead always works optimistically, one piece at a time, not panicking, knowing that the difficult situation will be resolved.

He has always had confidence in himself and his ability to help himself, his loved ones, (and clients when the firm was still open) work through problems. Rather than spending any time placing blame or rehashing exactly why something has happened, he puts his energies and focus into doing what needs to be done to move forward towards a solution.

Perhaps his brain is on auto-pilot when it comes to dealing with his own difficulties and losses for he continues to enjoy his days, love the people around him, and do the best he can do with "what is."