FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
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
(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
Sunday, December 30, 2012
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
Friday, December 28, 2012
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
Wednesday, December 26, 2012
Tuesday, December 25, 2012
Friday, December 21, 2012
-and I went to a party,
-and he behaved like all was well in Bethlehem.
-drank a glass of wine,
-ate some appetizers,
-complimented our host, and
- remembered how to put on his gloves.
Tuesday, December 18, 2012
Monday, December 17, 2012
Sunday, December 16, 2012
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
Sunday, December 9, 2012
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
(Click here to go to previous post.)
Tuesday, December 4, 2012
Shared with us in Sunday's Yoga Nidra session with Corinne Peterson.
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
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
http://www.corinnepeterson.com/yoga-therapy/ 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
Tuesday, November 27, 2012
In Alzheimer's Disease, Maintaining Connection and 'Saving Face'
If such a small change affects the way people see me, then the larger mental changes that Alzheimer's patients experience must truly and deeply change the way their loved ones see them. Dr. Daniel Potts, a neurologist at the University of Alabama, has begun studying the concept of "saving face" and preserving the "person" in people with dementia.
Dr. Potts' father, Lester Potts, became an acclaimed watercolor artist after his Alzheimer's diagnosis. He had lost his verbal abilities but could express his feelings through his art. This bolstered his retention of self-worth and dignity. His paintbrush let him bypass the part of his brain that Alzheimer's blocked, and communicate in a new way.
But before we find out more about art and Alzheimer's patients, let's go back to the "face" part of saving face for just a moment.
You are always at least a little surprised that, in reality, they have aged. You might recoil at the thought that they must be thinking the exact same thing.How is it that most of us instantly recognize someone before they utter a sound? How can we can pick a certain individual out of a large group photo? Large portions of our brain are dedicated to facial recognition and interpretation. What we see may trigger whole sets of emotions, memories, feelings, sounds and even smells. A picture of my grandfather triggers the wonderful aroma of his ever present half-chewed-half-smoked cigar. I can't help but smile when I see his face.
We automatically interpret others' facial expressions, but as people age or develop neurologic disorders like Alzheimer's or Parkinson's disease, they lose their familiar range of facial expression. We look at or talk to our loved one and we no longer see what we saw before. People with Alzheimer's disease not only lose verbal abilities, but also lose the ability to truly express their thoughts and emotions with their faces. In turn, we lose the ability interact with them the way we did in the past.
So, how can we learn what lies behind their eyes? Has the light gone out? Dr. Potts insists, emphatically, "No." He says, "We have to assure ourselves that our loved one is still with us, even though they don't always act like themselves. We do this by meeting them in their present-day world. We have to be open to their new ways of communicating, and help them find novel avenues for this expression."
We tend to preserve a mental image of the person as they were prior to their illness, the way we've known them our whole lives. Think about when you reunite with someone you haven't seen in 20 years. Before you meet with them, you have an image of them from 20 years ago frozen in your memory. You are always at least a little surprised that, in reality, they have aged. You might recoil at the thought that they must be thinking the exact same thing. As our parents age, we continue to see them as the people that we love and in the roles that they played in our lives in the past -- strong, supportive, and knowledgeable.
On top of these innate feelings, we ground so much of our adult identity in our vocational accomplishments that without them, many of us lose all personal identity. Of course, we don't want to be known only for our prior achievements. We want to be respected and admired for who we are now and what we contribute to our friends, families, and society. Those with Alzheimer's are no different.
Dr. Potts insists that when illness strikes we must validate the person in the present and "learn to love and appreciate who they are in their now." The person with Alzheimer's disease will not return to who they were so we must meet them and accept them in their new role. Dr. Potts tells family members and health care professional that they must:
- Discover who the people were by taking the time to learn their story.
- Appreciate who they are now and see them as more than their illness.
- Demonstrate for them their current worth.
- Help them preserve their personhood and dignity.
- Find channels for expression that bypass those blocked by their disease.
- Help them "save face."
When faced with a person with a spinal cord injury or amputation, their doctor or therapist focuses on their strengths and builds upon their "abilities." Unfortunately, in progressive neurologic disorders, like Alzheimer's disease, we are more likely to focus on the eventual outcome of the disease and not on the person's reservoir of abilities. Dr. Potts tells us that we must recognize "that personhood still exists, even in the presence of Alzheimer's disease and assist the person in saving face."
Sunday, November 25, 2012
I am taking a class at the Heartwood Center in Evanston with Corinne Peterson.
I am taking a class at the Heartwood Center in Evanston with Corinne Peterson.
Thursday, November 22, 2012
This article which I have reproduced here, dealing with boredom, was something I was aware of Gregory beginning to deal with and I have been working to alleviate boredom for him. It had not yet clicked with me that I could help reduce it more for Gregory when it came to letting him help around the house.
I have been able to find new activities for him like reading a newspaper (when his computer skills left,) or coloring in mandalas (which presented a more spiritual activity when compared to child like "coloring.) I change the complexity of jigsaw puzzles which he still loves to do. He still reads so I help him find books and we have subscribed to magazines with lots of pictures. He has several favorite perpetual calendar type books which features a beautiful photograph or architectural building each day and we have been using those for several years now.
We go out with friends, do a lot of entertaining at home, attend theater and opera, he has two companions with whom he is able to be out and around, we just began structuring his ability to go swimming in the building's pool, have our favorite TV shows, watch movies from NETFLIX or by streaming from our cable provider.
There is so much that he used to be able to do life skill wise that he can no longer do. So I pick up the slack and create a life for both of us. Often it is just easier for me to do the task then to try to explain it to Gregory. So I shop, clean, cook, fix, decorate, cut flowers, etc.
What I haven't been doing is going out of my way to figure out how to continue to include him in helping with our daily activities in a way that matches his declining abilities. I will begin to do so as of today with the motivation provided by this article.