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, July 28, 2011


RAGE: A Poem

I rage.
Over what?
The inability to cope,
With his disease.

He doesn't.
Over what?
The inability.
The inability.

An almost smashed cabinet door.
An almost smashed coffee cup.
At least inanimate objects.
At least almost.

They say when at the bottom,
Lessons can be learned.
Is rage the bottom?
When will I learn?


I rage
He doesn't
I rage
He forgives
He forgives.

Wednesday, July 27, 2011


When I tell my therapist that sometimes I feel like I cannot ESCAPE the 360 of caregiving for Gregory, he helps me reword it. He says that if I was trying to escape I wouldn't be sticking it out and I wouldn't be giving my all to keep Gregory safe, content, and to maintain purpose in his life.

Perhaps what I am looking for is just a "little time away" without the caregiving sitting in a little corner of my mind needing attention. I have slowly learned to find those free moments and recognize them when they do arrive. More later.

When I leave him alone I trust he will do well (and I will continue to leave him until he does not do well) but I call in to see how he's doing. Or he can still call me when he gets into trouble. Before I leave I have to set up his meal.

When he is with me I monitor his whereabouts and sometimes have to coach his behavior. I help him choose clothes and notice the weather. I double check that his cell phone is on and that his pockets are filled. We bring water for the car. I make sure a jacket is with us if it might be cool or air conditioned. I order for him at the restaurant, 

When we are fast asleep, like the good mother who knows when the new baby needs her, I am instantly awake when he needs me. Through my own exhaustion I soothe his nightmares, help calm his hallucinations, double check to make sure he is just up to the bathroom or that he does get up to the bathroom so as not to wet the bed.

I organize outings with friends and organize parties in our home because he thrives on being with people. I do all the planning, the work, and the clean up. But worth it because he loves it. We also go to movies, theater, field trips, museums, etc.

I have learned to search out those "time away" moments and to see them when they do arrive. When he is fast asleep, I am free. When he is reading in the living room, I am free. When I get involved in a good book or movie, I am free. When I go for a walk by myself and notice the flowers, I am free. When I get an hour massage, I am free. When I am holding his hand, I am free. When I remember that I do all of this out of love, I AM FREE!

Tuesday, July 19, 2011

I Have Lost Myself


In 1996, Dr. Konrad Maurer and his colleagues, Drs. Volk and Gerbaldo, rediscovered the medical record of Auguste Deter. In it Dr. Alzheimer had recorded his examination of his patient,
"What is your name?“
"Family name?“
"What is your husband's name?“ - she hesitates, finally answers:
"I believe ... Auguste.“
"Your husband?“
"Oh, so!“
"How old are you?“
"Where do you live?“
"Oh, you have been to our place“
"Are you married?“
"Oh, I am so confused.“
"Where are you right now?“
"Here and everywhere, here and now, you must not think badly of me.“
"Where are you at the moment?“
"This is where I will live.“
"Where is your bed?“
"Where should it be?“
Around midday, Frau Auguste D. ate pork and cauliflower.
"What are you eating?“
"Spinach.“ (She was chewing meat.)
"What are you eating now?“
"First I eat potatoes and then horseradish.“
"Write a '5'."
She writes: "A woman"
"Write an '8'."
She writes: "Auguste" (While she is writing she again says, "It's like I have lost myself.")
Alzheimer concluded that she had no sense of time or place. She could barely remember details of her life and frequently gave answers that had nothing to do with the question and were incoherent. Her moods changed rapidly between anxiety, mistrust, withdrawal and 'whininess'. They could not let her wander around the wards because she would accost other patients who would then assault her. It was not the first time that Alzheimer had seen a complete degeneration of the psyche in patients, but previously the patients had been in their seventies. Deter piqued his curiosity because she was much younger. In the weeks following, he continued to question her and record her responses. She frequently responded, "Oh, God!", and, "I seem to have lost myself". She seemed to be consciously aware of her helplessness. Alzheimer called it the "Disease of Forgetfulness".

Thursday, July 14, 2011

25 Word Flash Non-Fiction: Midnight Adventure

Middle of the night. Shit! shit! shit! What is the matter? How did they get in, pointing at a pair of shoes in the corner.

Wednesday, July 13, 2011

What Goes On In There?

I feel that I have a really good understanding of WHAT happens (or doesn't happen) in Gregory's brain that causes his outward appearances of Alzheimer's/Dementia. I have learned a lot by reading and on the Alzheimer's Association website including several on-line workshops provided there. I also have learned a lot from our neurologist and from a close family friend whose husband was diagnosed with ALZ about ten years earlier than Gregory.

What I have no grasp on is HOW at times the behaviors, actions, communications manifest themselves. I have put together the following way of describing it to those who ask. 

"At times I have absolutely no framework what-so-ever on which to hang an understanding of what took place during an interaction between Gregory and myself. Therefore I have no way of figuring out how to react or reply. This causes my confusion to compound his confusion and at times causes my response to be less than graciously caring. The caring is always there, but sometimes it is not as gracious as I would like it to be." 

Putting my feelings into words helps me better deal with the reality of any particular situation/or interaction and helps improve the response to any particular situation/interaction. Sometimes blinking and shaking my head in amazement helps me get through one of those types of interactions.

Monday, July 11, 2011

Ounce of Prevention

In our condo, we now have Alert 1's medical security system. You've heard the "I've fallen and can't get up!" commercial? Well I decided that for less than a dollar a day it was worth the piece of mind to know that I could get help quickly if I was in trouble.

Did I say I? Well with Gregory's Alzheimer's I realized that I could not depend on him in an emergency. If I need help, unless I am really far gone, I could probably be able to crawl to the station in the bedroom, TV room, or kitchen and push the button for help. If I can not tell the responder what the problem is they will automatically send an ambulance and paramedic.

Then they will notify several people on our emergency list to inform them of what is going on. Our friends can not get to the condo quickly enough to help but they can get here to help Gregory until I return or until other arrangements are made.

So today the system had a test. A fierce storm ripped through Chicago, including Evanston, and over 600,00 people were without power for most of the day. The power went out at 8:00 am, we left the condo at about 10:00 am and by 1:00 pm we received a call first from Jan, and next from Roger, the two first responders on our emergency list.

The Alert 1 unit has a battery back up for short power outages but our outage had spent the battery and the Alert 1 people got a "bad battery" message. They tried calling us but not only were we away from the condo, when the power is out our telephone system doesn't work. So Alert 1 followed through and called the first responders to check up on us.

I called the company back and let them know we were OK. I also added my cell phone number to their information bank with the explanation that our land line does not work when the power is out. While the exercise seemed full of "Strum and Dram" it was good to know that the system worked well.

I called Jan and Roger back and said, "We have not fallen and if we had, we were able to get up!"

Saturday, July 9, 2011


An interesting observation: When Gregory has a purpose behind what he wants to say, the words just don't come. Sometimes he is able to work out the details of his idea and other times able to hint or dance around the idea. On the other hand, when he just says what he wants to say, without any purpose, the words come easily.

He talks to the cat with no problem. Often he talks to me with no problem: "Do you want music with dinner?" No problem. ""Time for lunch." "I would like a frozen yogurt from Red Mango downstairs." "Bedtime already?" Spontaneous ... no advanced purpose ... no problem.

Formulating a thought ... problem! Yesterday we were on Navy Pier, in the beer garden, enjoying live music. Earlier, when we were having coffee and sharing a cookie, he was trying to tell me about something, some building on the Pier. He couldn't get any further so we let it drop.

Usually I sit and attend quietly with eye contact for as long as he needs while he works out his thoughts. This time he announced, "Oh I can't get there. We'll have to ask Roger." This didn't make much sense either at the time but I let it drop.

On our way to the Beer Garden, he even looked at a map of the Pier but to no avail. While in the Garden he was back on the topic of the "building on Navy Pier." I guessed a little: "Michael's Museum?" No. "The Ball Room?" No. "The Winter Garden?" No. Etc.

Finally he said, "You know ... the garden." "Winter Garden?" I repeated. No. "At our condo?" No. "The Shakespeare Garden at Northwestern?" Y  E  S!

I was then able to put the pieces together. There is a Shakespeare Theater on Navy Pier. We have been to a few shows and they are always great. He was thinking that he would like to see one this summer. Apparently Roger had mentioned that he saw the review of the current Shakespeare play in the newspaper. Puzzle solved ... this time.

Tuesday, July 5, 2011


Comments on: ""Accept the Gift" by Jane Hirshfield

In the poem, she discusses dealing with receiving a Bull "from the gods" as a gift. What do you do with it? How do you behave? Although the Bull is frightening, you will come to love it and to understand it as you nurture and take care of it. And when the time comes, you will be able to give it back to the gods freely.

While the subject may give you thought, the message is simple: accept it, take care of it, give it back when asked.

Housden comments: " ... life is a series of present moments rather than a linear progression from past to future, that our one true life can only really take place here where we are, and now .... Each moment comes bearing a gift - or is it a curse? - from the gods .... Someone somewhere will always be the recipient of it." 

It can be dangerous and frightening or loving and comforting. The later is easy to accept. The former arrives when something storms into your life and your "comfortable, protecting circle is suddenly broken."

Hirshfield suggests in her poem that it be accepted as a gift, not a curse, even though it may be a sudden illness or loss, a crisis, a storm or any kind. It is a gift because it is the moment you are in and the only one you have. 

Obviously grief, illness, loss will be heavy and will bring sadness and tears. But in the long term how you welcome it will influence how you come out the other side. Housden says, "Anything that surges out of the unconscious will always be bigger than the ego's drive to shape experience the way it wants to see it." The price of the gift is loss of control and surrender. What you can hold on to, however, is how you deal with it.

Acceptance of the moment as a gift is in essence a reminder that "everything in this world is only on loan to us." This awareness helps us to live each moment as well as we can, not miss it. Even though the moment can be taken away from us, "the essence of it can never be taken away from us, the love that has burst open our heart and ushered in a deeper, more vital way of living will always continue." 

An additional awareness is that everyone, most likely invisibly to us, is involved in and dealing with their own moments.

Ten Poems to Change Your Life Again and Again by Roger Housden. P 36. 2007.In her poem

Monday, July 4, 2011

Happy Birthday

Happy Birthday Gregory! He loves fireworks and his chocolate cake. When asked he will tell you he is 25 years old. Really 63 this year. I love my little boy.


Comments on: "Gate C22" by Ellen Bass

"...often deep, always poignant, frequently woven with threads of grief and loss as well as starlight. And always, always, so achingly human, which is why love is her subject over and again."

Ten Poems to Change Your Life Again and Again by Roger Housden. P 33. 2007.

Sunday, July 3, 2011


Michael, on seeing a license plate that said REPEET: "Peet and Repeet were sitting on a fence, Peet fell off. Who was left?"

Gregory: "I don't know him."

Michael: Quiet


Comments on  "Sonnets to Orpheus, Part Two, XII" by Rainer Maria Rilke.

"Change happens in every moment. Not just the events of our lives, but the cells in our bodies, our memories, even our sense of who we are, all shift in a moment, often imperceptibly. We, on the other hand, tend to nurture a fixed idea of who we are and where we are going. We harbor notions of what is good for us and what is not, and try to organize and strategize accordingly. Yet life does what it does with scant concern for our preferences, so the poet is urging us to look beyond the parade of circumstances and events to the fundamental fact of change itself. In wanting the change, we are aligning ourselves with truth, with what is already happening anyway. We flow, rather than self-consciously make our own way. And in that flow sense of who we are and where we are going becomes more malleable and fluid, more responsive to conditions around us instead of bound by fixed beliefs and agendas. In the flow of change, self-forgetting happens, and a deeper remembrance can emerge, the remembrance of being always and ever joined to a greater life - not as another idea or elegant concept, but as a lived experience in the moment."

Ten Poems to Change Your Life Again and Again by Roger Housden. P 21. 2007.

Saturday, July 2, 2011


In the next few posts, I will be quoting from and/or discussing a few of the ten poems in Roger Housden's Ten Poems to Change Your Life Again and Again 2007.

I have found great delight as well as comfort in poetry as a way of understanding and dealing with my emotional and intellectual reactions to the daily interactions with Gregory's diagnosis of Alzheimer's Disease.

Very often, when I sit down to write about them, my words express themselves poetically. I read somewhere, wish I could acknowledge where, that poetry is as close to truth as one can get. The poet works painstakingly hard to select just the correct words and just the correct number of words to paint, yes paint, a picture of what he wants to express.

As a writer, I too lovingly struggle with this. If you have been following this blog and my writer's blog, you have seem some of my poetry and you might have found also some of my 6, 10, or 25 word stories. Telling a story in so few words, while called "Hint Fiction," is so close to writing poetry.

As a writer, I have become so obviously aware that other writers have written words in ways with which I could do no better. So I find that "quotations" from others are important to me. I mark them with a Post-it while reading then process them in writing (with citations.)

In the next few posts, it looks like I am combining all of this: quotations about poetry from others. Let me know what you think.


As paraphrased from The Daily Word, Saturday, July 02, 2011.
I celebrate life with joy and gratitude.
Regardless of my circumstances at the moment, on this blessed summer day, I look for evidence of goodness and take it in with all my senses. I hear the joyful sounds of life--music playing, children laughing, and neighbors chatting outside their homes.
I savor the fragrance from a nearby rose garden or the aroma of dinner cooking on an outdoor grill. The taste of a refreshing glass of iced tea or an ice cream treat brings a smile to my lips. I revel in the warm summer sun or the coolness of an air-conditioned room. Each sensory experience reminds me of the joy of being alive, as joy shines in me and in the world.