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.

Monday, December 31, 2012

Thoughts for the New Year

I create my life one day, one moment at a time. As I reflect upon the accumulation of days, I may see days of sorrow or days when I fell short of being my best self. Yet as I continue my reflection, I also see the lessons I learned and the strength I developed in overcoming the challenges that appeared. While I cannot change a day that has gone by, I can view each one as part of the great creative process that is my life.
With the vision of Spirit, I choose to see my life as a gift that I am still creating. Each moment is a new opportunity to love, give, heal and prosper. I gather the wisdom and strength from days past and use it to make the present day the best it can be.

Art from The Dementia Plague

From the article The Dementia Plague
By Stephen S. Hall. 
In MIT Technology Review. Vol. 115 No.6
(Thanks to Joan & Robert for sharing this article.)

ABOUT THE ART WORK: When he learned in 1995 that he had Alzheimer's disease, WIlliam Utermohlen, an American artist living in London, immediately began work on an ambitious series of self-portraits. The artist pursued this project over an eight year period, adapting his style to the growing limitations of his perception and motor skills and creating images that powerfully documented his experience of his illness. The resulting body of work serves as a unique artistic, medical, and personal record of one man's struggle with dementia. Mr. Utermohlen died in 2007.

• • •

1995 Blue Skies - The first self-portrait completed after the artist's diagnosis shows a man whose world has become untethered. The artist clings to a table as if to anchor himself within a flattened, featureless space.

1996 Self-Portrait (Yellow and Green)

1996 Self-Portrait (Red)

1997 Self-Portrait (with Saw)
The artist learned that his doctors would be unable to definitively diagnose his disease until autopsy. The saw depicted here is an open allusion to this fact.

1998 Self-Portrait (with Easel)

1999 Erased Self-Portrait

2000 Head

Sunday, December 30, 2012

Meditation Class 7

Missed last week's class but will listen to the MP3 when I can. I had to struggle with the choice of "skipping" another week if only because of so much going on during the holiday season, I just didn't want to face the "work" of calming down enough to go through 40 or so minutes of intense mindful meditation.

But I went anyway and am glad I did. Even after missing a week, I was able to meditate deeply, although amid a whirlwind of competing images and thoughts. I was able to notice them, say "Not now," and tune back into Corinne's soothing guidance.

This week in my Nidra Yoga Meditation class we concentrated on beliefs. My intent was to focus on my weight. My heartfelt desire I labeled HEALTH. The idea is that my weight is at such a point that I am uncomfortable, do not like the way my clothes fit, do not like the way I look, find my energy lacking, sometimes have difficulty with being out of breath, tire easily, and generally do not feel that I am being as good to my body and HEALTH as I should be.

It is easy to slip into getting used to being where one currently is and coping with the existing conditions. They become internalized and become part of who you think are as opposed to what your true nature is. When you get used to the difficulties in moving around, bending, lifting, breathing, etc; you accept that as the norm.

Eventually one has spent so much time thinking that the norm is the truth that you need to spend at least that amount of time undoing the norm and rediscovering your truth and honestly, that feel hopeless. Easier to accept what is rather than change or revise.

So in our meditation, when Corinne asked us to look at our beliefs about our intent and heartfelt desire, I have to admit that my little voice said to me, "You really don't believe you can do this, do you?" And the honest answer was, "No, I don't! I know that I must take control of this situation, I know how to do so by eating well and exercising, I just don't believe that I can or will so it is easier just to have another cookie or piece of pizza."

Next week we will continue to look at beliefs as a way of bracketing the New Year. Kind of like my New Year's Resolution, stated in positive terms as though already realized:

I am healthy. I exercise regularly. I choose healthy foods and avoid sugar, white flour, and fried foods. I do not eat to "keep my child happy." I eat slowly and with relish and know when I have eaten enough. I am energetic and breath easily even on heavy tasks. My clothes fit well and I look good to myself in the mirror. I know I will never have the body of a 20 year old again but at least with my clothes on, I look good!

An interesting aside is that during the entire meditation Gregory did not exist. He was sitting downstairs reading a book, his companion had called in sick so I took him along, I knew he was busy and safe.

Upstairs I was meditating on issues that only had to do with ME! I thought of him once during the meditation but told myself he was OK and asked those thoughts to go away for now, which they did.

Often my heartfelt desires dealt with my being able to be patient with Gregory, and understanding, and successful as a caregiver etc. This was the first time I worked on only me, right from the beginning of the meditation.

Every now and then a "blessing" or "gift" arrives in your life. Corinne Peterson has been that for me. Arriving at just the time I needed to be able to find a peaceful place, outside my active and stressful days, away from the noise of my mind.

I had read a lot about the process and the need of meditation and I had thought I could just lock myself in the dark closet and "do it!" I never succeeded let along begun.

When Sarah McLaughlin, my massage therapist, introduced me to Corinne, my path was made clear. Thanks to both Sarah and Corinne for being part of my life.

I am taking this class at the Heartwood Center in Evanston with Corinne Peterson.

Saturday, December 29, 2012

A Miracle of Choreography of Heart Space

Reproduced from a post by close friend Jan who in turn pointed people to my blog. So if you find you are going in circles, STOP :-)

We were out tonight with long time friends (35+ years?), eight of us in all. GM (I have written about him before), one of the eight, was diagnosed with early onset of Altzheimers about 10 years ago and has progressively lost his words as well as a reduced ability to perform simple tasks including getting dresssed and eating. Some gifts were exchanged before we all walked to the local Chinese restaurant for dinner. GM’s partner asked him to take the paper and plastic to the recycle at the end of the hall near the elevators. GM looked confused and I said I would walk with him. In the hallway I asked him how he was feeling. He stopped and said, “I feel so…………” and then there was a long pause which is not unusual in his speech as he tries to locate words, “…………..happy.”
And then his eyes filled with tears and of course, then my eyes did too. I rubbed his back and said, “It sounds like you are more blissed out than happy.” He smiled. “Not many people are so lucky.” He nodded. We continued to the end of the hall to the recycling and worked our way back to the apartment.
Later in the evening I shared this little interlude with his partner, MH. He said, “I guess I’m doing a really great job.” Then his eyes filled with tears.
A caretaker’s love is often in tension and stressed. For GM, life can be a kind of nirvana though there is often frustration for him too. Balancing all this for the well being of both the caretaker and the one being cared for, is a miracle of the selfless choreography and capacity of heart space. While the unraveling relentlessly advances, I continually marvel at MH’s ability to create a safe and rich space for GM, even though it may come at some or great sacrifice on MH’s part. I am humbled by the depth of relationship and complex intricacies of the dance they share.
MH has maintained a blog about GM and the progressive manifestations of his Altzheimers. You ought to check it out. It is raw, genuine, and incredibly inspiring.

Friday, December 28, 2012

Always Thinking

Well one of us can still think, communicate, problem solve ... and thanks for that. It makes both of our lives much easier although I have often wondered what life would be like if both people in a relationship had the big "A." Nothing would get done but boy would their days be interesting.

Often I know what Gregory wants to say before he can say it or when he isn't able to say it. Our friends marvel that I usually know what he is trying to communicate with few or no hints. He'll say something like, "I was thinking..." and then he gets hung up. I finish the sentence "that it would be nice to go to the Botanic Garden?" "Right," he says with a feeling of accomplishment.

I recently solved a problem he has been having. Every morning one of the first things Gregory does is shave. He uses an electric razor which presents various problems. First you have to think about what you are looking for, next you have to remember where your razor is located, then you open the cabinet and take out the Norelco, continuing you plug in the cord, then you have to plug the cord into the wall, next you must remove the razor blade cover, almost finally you have to turn on the shaver, finally you must navigate your face with the razor, back and forth, until all (or most) of the beard is gone. Usually he does well with these skills. Sometimes I need to help but rarely although I have taken over the cleaning and oiling of the machine.

Now that you have the detailed picture, we move on to the problem. A man's beard, often, is indistinguishable from his sideburns. Slowly Gregory's sideburns have been disappearing. I need not go into detail as to why. His barber, I believe, in an effort to even them out ended up taking enough of the sideburns away so as to make Gregory look like he was living in the 1950's again or that he is a Gay Convict or in the Army. You know the look.

I find the look passable but unflattering so I told the barber that I would prefer that Gregory's sideburns NOT be "lifted" and discussed the issue with Gregory as well. Now, how to help him accomplish this task? I pointed out where his sideburns should be and during the pointing realized I probably was doomed. How would I solve this problem? For several mornings I reminded and showed him the geography contours that I hoped his sideburns would follow. Not too successful.

Finally I came up with a solution. Glasses. I had saved a pair of 3-D movie glasses, punched out the plastic lenses, and showed Gregory that if he put the glasses on while shaving, he could "shave up to here." So far it has been working and I am very, if I must say so because no one else will, proud of myself.

Now I have to remember to remind him to put on the glasses but that is no big deal. Watching him try to put the glasses on backwards with the arms sticking out into space, or upside down with the bridge of the glasses resting directionally challenged on his nose, not only amuses me but also amuses him and are easily corrected dilemmas. Once on, the glasses not only solve OUR problem but they also make Gregory look quite intelligent!

Arn't you proud of me?

Thursday, December 27, 2012

A Poem

When old words die out on the tongue,
New melodies break forth from the heart:
and where the old tracks are lost,
new country is revealed with its wonders

Rabindranth Tagore

Wednesday, December 26, 2012


“I learned that courage was not the absence of fear, but the triumph over it.” ~Nelson Mandela

Friday, December 21, 2012


Today Gregory:
-Didn't know how to cut a chunk of Chicken with his fork.
-Didn't realize that there were buttons sewn to his shirt for fastening.
-Didn't know how to put on his gloves.

Tonight Gregory:
-and I went to a party,
-and he behaved like all was well in Bethlehem.
-Socially appropriate,
-mildly conversational,
-drank a glass of wine,
-ate some appetizers,
-complimented our host, and
- remembered how to put on his gloves.

Alzheimer's Can't Wait

Tuesday, December 18, 2012

Monday, December 17, 2012


Now think about what it must be like when those connections and associations begin to break down. Language no longer works, thoughts exist but expressing them is not possible, memories continue but you can no longer access them, routine is no longer possible. Life goes on but you are slowly not recognizing most of it any more.

Sunday, December 16, 2012


Session five.

Spent more time today on emotions, session intention, and heartfelt life desires. I won't be able to be too articulate about this session because I WAS GONE. For the full 40 or so minutes. I was able to reach a deeply meditative state away from day to day activities which often are hassles especially at this holiday season. Was able to get away from Gregory as a main focus and spend some quality time with myself. All kinds of little awarenesses came and went but none dominated or distracted my relaxed meditative state. It felt good.

My intention was to be better able to take care of myself in whatever ways are necessary. "I take care of myself."

My heartfelt desire was HAPPINESS. "I am happy."

Interestingly enough I did spend a little time thinking about those activities which I would usually attribute to my responsibilities and immense love for Gregory. I realized that those very "requests," summarized by the term HAPPINESS, all had to do with me! For example being supportive of Gregory in a loving, even, patient way provide me with peace of mind and therefore happiness. So Gregory definitely benefits, but those actions add to my feeling of happiness.

I visited my "internal resource," which I have mentioned previously. It is deep in a mature forest, with a clearing with dappled sunlight and flowers, and just across a path my tiny house just big enough for one. Today I added a rustic bench to the garden. About a block away at the edge of the forest is the ocean with the waves that can be heard through the house's windows or while sitting in the garden. Corinne suggested we give our "internal resource" a name so we can use it as a trigger to the inner peace and safety one feels there. I called it, "Peace."

We revisited the ability to "Welcome" emotions, to recognize "Emotional Fusing" and to be able to de-fuse. Welcoming means that as human beings we WILL experience emotions, some good some disturbing. By recognizing that fluxuation of the emotions one can invite the disturbing ones in, wonder about them, deal with them, "ask them" that they are seeking from you, and finally ask them out.

Fusing deals with the occasions in which the emotions totally take you over, like being so angry you "see red" or you "rage" or can't stop crying. By realizing that you are fused with the difficult emotion, you can accept it but then begin to release and back away and defuse from it. We all get "fused" periodically, but better to be aware of the "fusion" than to be lost or trapped in it without awareness.

Monday, December 10, 2012

E-Mail to Friends

First, fun evening. I was afraid that 007 was going to be a little too "shoot em up" for G but he seemed to do well and said he enjoyed the movie. I did too although it has been along time since I've seen an "action film." In fact the last one was "Batman's Dark Knight Rising." G shook through most of the beginning and I was almost ready to leave but he settled down and we held hands through it. It was hard for me emotionally but now want to see it again on DVD because it was so complex that I think I probably missed a lot. In many ways it was very reflective of what life seems to be becoming. Probably true with 007. If you can imagine it, someone has done it.

Know I don't have to apologize ... but sorry the beginning of dinner got off to shaky start. Next time I think I'll sit next to G so I can help. Part of the problem is that you guys are not used to him, he is not used to your "speed," I am OVER protective, and obviously he did not do well with all of us trying to support him at the same time. 

You guys did well, I backed off a little, but had to ball him out a little and hope that wasn't too difficult for you to be involved in. I did appreciate his sense of humor but in some ways it is more of his becoming more and more of a child and me becoming more of a parent. 

His language is almost non-existant and besides confusing his words, like meaning YES but saying NO, he no longer understands or makes associations with most words. Before you arrived, he wasn't sure what else he needed to get dressed and looked quite dapper in his black shoes, sox, underpants with black belt, and undershirt. Try living your life like that:-) But we survive.

When we got upstairs after the movie, we had tea and cookies and then I told him to go get ready for bed and a shower and I would clean up the kitchen. Ten minutes later I headed to the bedroom and he is no where to be seen. I called out and he was in the TV room with the door closed. I asked what he was doing and he couldn't explain. I think he got "lost." When these short circuits take place we cannot discuss them because he has forgotten by the time I ask and cannot retrace his steps. He finally did say he was getting ready for bed. In the TV room?

Anyway, I know your lives are full but I do suggest you check out the Alzheimer's BLOG now and then to keep up with his progress and my coping abilities. We love you so and are grateful that you and yours are part of our life. 

Sunday, December 9, 2012


Session 4. The purpose of today's meditation was to bring one closer to one's Essential Nature and to be better able to distinguish it from one's Essential Self. The Essential Nature is the underlying nature of all existence of which each one of us is a part. The Essential Self is what makes each one of us a unique person along with our interpretation of who we are and our self perceptions of the world we live in.

I recently have been reading about this same topic in The Fifth Agreement by Don Miguel Ruiz. He talks about how we, as humans, come to make sense of our world. "We put words together from nowhere; we make them up. Humans invent every sound, every letter, every graphic symbol. We hear a sound like "A" and say, 'This is the symbol for that sound.' We draw a symbol to represent the sound, we put the symbol and the sound together, (use them to create words) and we give it (them) a meaning (s.) Every word in our mind has a meaning, but it's not real, it's not truth. It an agreement with ourselves, and with everybody else who learns the same symbology."

This varies from language to language, from culture to culture, from belief system to belief system. The way we describe ourselves is not the truth, it is an agreement on the understanding of our symbolic language. The truth, or Essential Nature of each one of us is what exists from the day we were born and before we complicated it with our "Agreements."

Besides our creation and agreement with others on language use, we also learn from others as they assign values like good and bad, fat and skinny, beautiful and ugly, etc. These agreements are not truth (Essential Nature) but we come to accept them anyway from the important people in our lives like our parents, siblings, family, friends, teachers, religious leaders based on their agreements (Essential Selves.)

So to bring us back to the session, it was a difficult one for me. For some reason I became frustrated and fearful. I was unable to look closely at my Essential Nature and the Self kept getting in the way. I felt sad, very alone, somewhat depressed, focused on my lacks and faults, and on the continuing and increasing difficulties in being supportive of Gregory. I was quite far from being able to get past that to embrace the true me, with whom at times I am able to visit, but not this time.

Towards the end of the session I became anxious and as suggested early on in the beginning sessions, I visited my Internal Resource where I could feel safe and protected. I hope to write about that later but suffice it to say it exists in my visualization of an old forest, with a small house nestled among the trees, and at the edge forest - the ocean.

It did calm me down but after the session I carried the heaviness with me out to the car where I cried for a while and then went to Pannino's for an Italian Beef Sandwich with lucious hot French Fries. I'll feel better tomorrow.

Wednesday, December 5, 2012

Comment on "A Play"

This in response by my friend Pat to a previous post "A Play in a Series of Poems."

 heaviness, sadness, frustration,
confusion, depression, tears and at times desperation,
even if laced with love, compassion, insight, and humor

I think this describes life, and most plays too. Remember “The Outgoing Tide?” It’s all in how you tell your story. To have people pay, they want to have some empathy with or at least recognize the characters or their situations, see some change and growth, some crisis points, resolution (or not, sometimes) and in many cases, laughs are needed to relieve the deeper parts. And that’s entertainment!

(Click here to go to previous post.)

Tuesday, December 4, 2012

Free and Easy Vajra Song

Shared with us in Sunday's Yoga Nidra session with Corinne Peterson.


Vajra (Devanagari: वज्र;Chinese: 金剛 jīngāng; Tibetan: རྡོ་རྗེ། dorjeJapanese: 金剛 kongo) is a Sanskrit word meaning boththunderbolt and diamond. it is also a common male name inTibet and Bhutan. Additionally it is a symbolic ritual object that symbolizes both the proprieties of a diamond (indestructibility) and a thunderbolt (irresistible force).

Free and Easy Vajra Song
By Lama Gendun Rinpoche

Happiness cannot be found
through great effort and willpower
for it is already present
in relaxation and letting go.

So don't strain yourself;
for there is nothing to do.
Whatever arises in the mind
has no real importance,
for it has no lasting reality.
Don't be attached to it;
don't identify with it and
don't pass judgement upon it.

Without changing or manipulating anything
let the entire game of life happen on its own,
springing up and falling back like waves--
everything vanishes and reappears,
magically without end.

Our searching for happiness
prevents us from BEING it
like rainbows that we pursue
without ever catching.

What is real already exists
always here
accompanying us in every instant.

Wanting to grasp the ungraspable
you exhaust yourself in vain.
As soon as you open and relax,
space is here -
open, inviting and comfortable.

Don't search any further.
Don't go into the tangled jungle
looking for the great elephant
who's already resting quietly here at home.

Nothing to do,
nothing to force.
Nothing to want-
everything happening by itself.

Sunday, December 2, 2012


I am taking a class at the Heartwood Center in Evanston with Corinne Peterson. and have been posting any insights I gain during the Sunday sessions. Today was session three.

This session we focused on JOY which interestingly enough I posted about last session as well. Corinne talked us through a way to focus on bringing JOY to the forefront of our thinking when we need it.

So far, through the mindful meditation and awareness of body and breath, I have developed for myself the concept that I exist within the boundaries of my physical body and the rest of the world is outside of my boundaries.

I can fill my boundaries with emotions, beliefs, and thoughts that I want to let in. I can invite the "difficult" in to look at, deal with, come to grips with, but then I can invite it out and close the door behind it.

Just because there are difficulties in my life does not mean that I have to allow them to "fill" me and my "body space" and drain me of happiness and joy.

So when Corinne suggested using color to activate the JOY that exists within, I defined my physical boundary space with a bright golden neon outline. When I want or need to focus on the JOY WITHIN, that is all I have to do is flip on the switch and the neon outline of my physical boundary will glow brightly.

Another realization arrived when I was at the most relaxed point of our meditation, "The mind gets in the way. If one can turn it off and JUST BE, one is probably the closest that one can be to truth and to peace. The rest is noise.

On going into the session, I had intended my "intent" to deal with my anger over interactions with Gregory that "get strange." I did get a message here too. It was brief and to the point. "Don't try to deal with the anger, just replace it with love, and more love!

Saturday, December 1, 2012

Have a Good Day

In some ways this is true for the person with Alzheimer's and for the one who loves that person. By letting go of the past you can live in the now and try not to worry about the future. Today is all we really have. Maybe the comment from the store clerk has a greater meaning than we know, "Have a good day."