#5 Loving Lessons from a Caregiver

I learned that being full, complete individuals inside of a loving relationship allowed Alan the freedom to leave his role and become something different without altering my feeling that I was a complete human being. We weren't two halves joined together to make a whole. When he died I ended up intact because I had defined myself as complete. None of this ignores the love and loss of two complete and individual people.
If you know of caregivers that are suffering from the loss of their "better half" let them know that all these lessons are topics for discussion and jumping off points. We need to discuss each and every issue that a caregiver encounters. There are many points of view and many wonderful solutions that we can help each other find. For a closer look at what goes on in the life of a long time caregiver check out my memoir Living on the Verge of Insanity

#4 Loving Lessons from a Caregiver

I learned that leading a rich life through my music, dance and sports better prepared me with the emotional resources and skills I would need for this long journey.
Each activity made me more confident in the choices I had made in my life and confident of who I am. I had said to a friend years before that our belief in ourselves and who we deeply are needs to be shaped long before tragedy strikes. Some folks have their Gods to believe in and others have to find or construct their beliefs.

# 3 Loving Lessons from a caregiver

I learned that there are no limits to the call for love and intimacy. There is always another challenge, another level, another adventure. We may have limits for how far we are willing to travel into love but no limit for the level asked of us.
In my memoir, Living on the Verge of Insanity I describe how I finally had to hand over the main tasks when Alan needed a health aide. A sample chapter is available on the website.
In our caregiving there will always be something more that is asked and we get to say yes or no.

#2 Loving Lessons from a caregiver

During my eight years of caregiving I learned deeply how life is here to be lived, beyond memories, beyond reason, beyond hopes, beyond change, beyond judgments and beyond loss.
Engagement is the most important thing to me now, like being involved with my Salsa dancing, Zumba, jazz, triathlons, kickboxing, Rotary and growing my businesses. It's not about judging how good I am at any of them but rather how deeply committed I am to experiencing my chosen interests.
In Living on the Verge of Insanity I discuss how I was able to live this way and care for Alan even if it meant arranging to bring him to everything I was engaged in.

#1 Loving Lessons from a caregiver

I was able to narrow down to 30 the loving lessons that I discuss in my memoir "Living on the Verge of Insanity". My dear readers will get to learn what these lessons are in installments over the next couple of months.
Please let caregivers know that I am doing this so they can borrow my lessons to fortify themselves. Hopefully they'll better be able to keep their hearts open while avoiding the almost inevitable burnout we all feel.

Lesson One
1) I learned to draw on all my talents and skills in other areas of my life and apply them to my caregiving.
In the book I describe how I used my Life Coaching skills to find different perspectives on what was happening and my Montessori teaching skills to invent appropriate activities for Alan's skill levels.
a) From my Life Coaching I used metaphor: Like the times when he would call to me over and over to stay in touch. I used the metaphor of birds calling to each other tweeting, "I'm here, you're there". It made the repetition bearable for me since I am a bird person and have my African Grey Charlie on my lap as I type this.
b) The advice out there is to keep activities manageable to avoid stress for someone with Alzheimer's. I describe how Alan's laundry skills changed over time from doing the whole load to years later being limited to carrying things upstairs for me to fold. I would feel content in knowing I was able to use my skills as a Montessori teacher to help to keep him busy, happy and proud of his accomplishments with his dignity intact.
Stay tuned for lesson #2 where I talk about engaging deeply in my life while caregiving for Alan as a way to flourish and learn from my experiences.

My new book is in pre-release

Please forward this information to any caregivers you may know. Thanks.

In case you missed the email announcement I decided to post this here. Sorry for the duplication......

My book Living On the Verge of Insanity will be coming out soon. Here's the description. The printer is shipping them so all I need is your address sent to me at sotmary@gmail.com. I'm giving 30% off for pre-release orders that will get to you by 3/1/09.

With so many self help books on the market it's nice to have a behind the scenes look at what goes on in the long term care of a loved one with Early Onset Alzheimer's Disease. Whether you are caring for an aging parent, a troubled child or a spouse with emotional or health problems, there are many things to consider and lessons to learn during these stress-filled times. Living On the Verge of Insanity follows Christine and Alan's journey to discover how she learned that care giving can be a loving, enriching time in life but often it gets derailed. Find out how one caregiver learned to stayed on track and reached deep inside herself to find untapped resources and skills she never knew she had.

What readers are saying:

"…an easy read and a tender love story of a caring person."
Jean Hampsas, the caregiver for her husband


"The book is an intimate look into a partnership and truly serves as a practical and non-judgemental guide which I feel will help readers who are already well into (or have even finished) their own journeys to reflect and realize their own positive insights . It was an honor to review this beautiful elucidation of Chris and Alan's deeply moving experiences together and it brought to mind many pleasant memories of my dear mother. Thank you both for this opportunity."
Felicia Gironda, former caregiver and Associate Professor at Touro College, specializing in normal and abnormal aging


"I’ve known Christine Sotmary for over fifty years. We played together when we were children and, separately, we have known tragedy and pain. Reading her story of her journey and of the strengths she developed and discovered that she had has helped me understand better the woman she has become and the way that a strong and determined person can grow through struggle and pain. This is a book that has to be read more than once."

Leonard Marks, caregiver for his wife and Christine's childhood friend


"Thank you for the pleasure and privilege of reading your manuscript Living on the Verge of Insanity. I found it to be a most moving love story and an incredibly poignant honoring of your life partner.

Your careful descriptions of your relationship with Alan, before, during and after his illness, are truly informative to anyone who has ever been in a relationship at all, not just people who have been involved in the care of an ill loved one. Your depiction of the progression of the illness itself is a tribute to the human spirit's transcendence of bodily illness and is therefore inspirational to all, since we are all vulnerable to our own eventual physical decline.

I am left with the impression of your being an extraordinary individual, and I thank you for having confirmed my long held conviction that the arts are powerfully healing forces and that ongoing involvement in an art form, over the course of one's life, can usher us into the final phase with grace and dignity.

Thank you again for allowing me to share this with you!"

Judith Luongo, M.P.S., A.T.R.

About the author

Christine Sotmary, M.S., L.Ac, CPC is a certified Life Coach specializing in coaching caregivers to rediscover joy, find resources and hold on to love they have for themselves and others during these trying times. Go to www.gotcoaching.com for more information.
She also is a powerful speaker on the many loving lessons that she learned during her 8-year journey of caring for her sweetie. Find more information on her talk 30 Loving Lessons for Full Hearts: fortifying caregivers by going to www.livingontheverge.com

Christine Sotmary, M.S., L.Ac. CPC
Author
Living On the Verge of Insanity: Loving lessons learned from my sweetie’s early-onset Alzheimer’s disease
ISBN: 978-0-692-00022-9
sotmary@gmail.com
917-273-1308

"In addition to relieving patient suffering, research is needed to help reduce the enormous economic and social burdens posed by chronic diseases such as osteoporosis, arthritis, diabetes, Parkinson's and Alzheimer's diseases, cancer, heart disease, and stroke."
Ike Skelton

Radio Lab and the How We Make Choices Show

The explorers are back! This time Radio Lab with Jad Abrumad and Robert Krulwich travel deep inside our brains to discover how we make the decisions and choices in our lives. They look at things such as: Why do some people seem better at making decisions than others? And: Should you listen to your head or your heart?
They leave you with a feeling that our subconscious and our emotions rule and all our claims to the contrary don't hold up to the bright light of examination. Enjoy the show.

Genius, Creativity and Invention

I was reading In the Air by Malcolm Gladwell, in the May 12, 2008 New Yorker magazine about how inventions come about and whether there could be a way to manufacture a setting for new ideas to flow. As a jazz musician I have always been keenly curious about how creativity originates and leads to musical invention. According to the article, it doesn't take a genius to invent something new....phew!
Nathan Myhrvold, the guy who started Microsoft’s research division, wanted to create insights—to come up with ideas. He thought that if he brought lots of very clever people together to collaborate they might increase the number of inventions and ideas they might patent. The experiment succeeded way beyond their expectations. Hundreds of ideas have reached the patent office, with thousands more still yet to be submitted, many of significant interest, like filtering cancer cells out of the blood or stopping hurricanes or building safe, passive nuclear reactors.
Gladwell observed that in math and science there seem to be clearly defined periods of time of discovery and invention. When we are exposed to a culture ripe with information, history tells us that several people often invented the same thing around the same time. Gladwell writes:
This phenomenon of simultaneous discovery—what science historians call “multiples”—turns out to be extremely common. One of the first comprehensive lists of multiples was put together by William Ogburn and Dorothy Thomas, in 1922, and they found a hundred and forty-eight major scientific discoveries that fit the multiple pattern. Newton and Leibniz both discovered calculus. Charles Darwin and Alfred Russel Wallace both discovered evolution. Three mathematicians “invented” decimal fractions. Oxygen was discovered by Joseph Priestley, in Wiltshire, in 1774, and by Carl Wilhelm Scheele, in Uppsala, a year earlier. Color photography was invented at the same time by Charles Cros and by Louis Ducos du Hauron, in France. Logarithms were invented by John Napier and Henry Briggs in Britain, and by Joost Bürgi in Switzerland.
This made me think that a particular cultural environment sets the stage and the ideas follow closely behind.
Gladwell also spoke about how the power of observation leads to discovery. Being attuned to the cultural climate and our surroundings enhances the opportunity for discovery and invention. As an example, for years people in archaeological expeditions walked past complete, intact skeletons of very large dinosaurs in Montana and never saw them until Nathan Myhrvold, that guy who started Microsoft’s research division, and Jack Horner, the American paleontologist, put their teams together to go looking. With his powerful ability to observe his surroundings Myhrvold has found 9 T. Rex dinosaurs in the last ten years when the previous 90 years had yielded only 18 discoveries. So it seems that having these very refined powers of observation is critical to discovery.
Throughout the article Gladwell cites examples where having clever people on your team helps as well to increase your chances of invention. Several folks working together can equal the potential for invention of one genius working alone.
So the lessons to be learned:
a) Create a world around you alive with curiosity and bubbling with new information
b) Develop, refine and use your powers of observation
c) Get together regularly with inquisitive friends to brainstorm

Gladwell’s talking points apply to scientific geniuses, nature and their ability to invent. He doesn't think that these ideas relate to artistic geniuses but I disagree. His feeling is that artistic genius is a singular phenomenon. Who would like to brainstorm with me on this? Maybe together we can create a convincing argument to challenge his otherwise provocative piece.

Going Beyond the Physical

Krista Tippett hits a home run with this interview with Seane Corn concerning the heart of Yoga on her radio show Speaking of Faith. Worth the listen and even worth a listen to the unedited version. Brew some relaxing tea and settle into your favorite cozy spot to listen and enjoy.
Here's a little teaser:
"Because that is the experience that one has when they are aligning the mind with the body. And that's really the next part of it, too, when you're talking about the benefits of this practice. It comes to this: In the practice of yoga what we're taught is that there is no separation between the mind and the body, and everything that we're thinking or feeling or experiencing over the course of a lifetime, or lifetimes, has an effect on your cellular tissue. So your body remembers everything and even though we have as human beings a gorgeous ability to reconcile or to reason, our bodies don't have that same ability to heal unless we're moving through experiences in our life in a spiritual way. So what I'm saying is if we're holding onto hate, blame, shame, anger, rage, sadness, or grief, something like that, those emotions can be as toxic on our physical body as a poor diet or as inertia. They manifest as tension, stress, and anxiety. So our physical body is actually masking the emotional resonance that lies beneath it."

All the Time in the World

Here in the northern hemisphere we are winding down from our summer schedules. Most are getting back to work, back to school and for many of us back to a busy schedule.
In the southern hemisphere they are heading into summer, a time for beaches, relaxation and time with family and friends.
In our plugged in world it is easy to long for a slower pace with more fun stuff to do. On the other hand there is a palpable restlessness in the air. It makes it hard for some of us to sit still anymore. We fail to enjoy our surroundings or indulge in long, relaxing conversations. There seems to be the ever frequent interruptions from our blackberries, cell phones, internet and emails.
Taking breaks to experience the present moment is one way to break the frenetic cycle. We don't have to wait until next summer to watch a bird soaring above or listen to the sound of chimes in the wind. Taking time away from our busy schedule requires some determination but the rewards are many. Better health, improved mood and the gift of inspiration are all the "side effects" of taking some time out of our day to enjoy what is right in front of us. Best of all it's free!

Success Is Not a "Do It Yourself" Affair

This is a great 5 minutes about a college kid who took another route. His job has taught him lessons that many of us only learn in our later years. Enjoy his discoveries....Being Vulnerable Entwines Us All.

Chemistry and our To Do List

Most of us are busy ticking off our daily list of things to do.
I have seen the effects of these three things, which ought to be put at the top of our daily list of tasks, that will form the perfect chemistry for the rest of our activities.
a) Get plenty of sleep.
b) Experience happiness in the things that gratify us.(gratitude+satisfy)
c) Find tools that create relaxation and help us find some peace.

From my observations, I can say that, the activities that effect our chemistry most point to where our health is headed.
I've been thinking about the almost 30 years that I have been in the field of health and healing. These are the three ways, that I have found, for people to take back a little control and make the most dramatic improvements in their health and wellbeing.

All Stories are Created Equal

I was cleaning up my apartment and stumbled over this quote from my acupuncture school days. Life is full of camps. Ours vs. theirs. I'm always looking for inspiration to help dissolve our divisions.
This quote helped me resolve my understanding of the many mysterious contradictions in Chinese Medicine and has became a great guide for the rest of my life as well.
....The momentary stability afforded by such models is an illusion because the essential nature of life remains chaotic and unknowable. Models are tools, elaborate stories, and we must recognize them as such. Diversity is what emerges when individuals are each able to embrace the freedom to create their own mythology while simultaneously allowing others that same freedom. For the sage, all stories are created equal inasmuch as thy empower the creative flow of life.

Inches Away from Nirvana

A good friend sent me this fascinating video with Jill Bolte Taylor, a neuroscientist with first hand experience of the split between the left and right hemisphere of the brain. It is the most revealing look into the degree to which we can alter our perceptions instantly. I promise the 18 minutes it takes to watch the video will be time well spent. You can load the video from the transcripts on the right side, if you have trouble with the scripts. Enjoy....

The Value of Friendship

Last week's Speaking of Faith was an interview with an Irish poet and philosopher, John O'Donohue.
This is a touching excerpt from his book Anam Cara.
"In the Celtic tradition, there is a beautiful understanding of love and friendship. One of the fascinating ideas here is the idea of soul-love; the old Gaelic term for this is anam cara. Anam is the Gaelic word for soul and cara is the word for friend. So anam cara in the Celtic world was the "soul friend." In the early Celtic church, a person who acted as a teacher, companion, or spiritual guide was called an anam cara. It originally referred to someone to whom you confessed, revealing the hidden intimacies of your life. With the anam cara you could share your innermost self, your mind and your heart. This friendship was an act of recognition and belonging. When you had an anam cara, your friendship cut across all convention, morality, and category. You were joined in an ancient and eternal way with the "friend of your soul." The Celtic understanding did not set limitations of space or time on the soul. There is no cage for the soul. Teh soul is a divine light that flows into you and into your Other. This art of belonging awakened and fostered a deep and special companionship. In his Conferences, John Cassian says this bond between friends is indissoluble: "This, I say, is what is broken by no chances, what no interval of time or space can sever or destroy, and what even death itself cannot part."
In everyone's life, there is great need for an anam cara, a soul friend. In this love, you are understood as you are without mask or pretension. The superficial and functional lies and half-truths of social acquaintance fall away, you can be as you really are. Love allows understanding to dawn, and understanding is precious. Where you are understood, you are at home. Understanding nourishes belonging. When you really feel understood, you feel free to release yourself into the trust and shelter of the other person's soul."

Healthy Glow

I was putting paper in my African Grey's cage, when I stumbled on this New York Times article from back in December on Acupuncture Face Lifts. More and more people have been asking me if I can help them or their friends look and feel younger. Classical acupuncture, which was the bedrock of my training, offers the hormonal help that most of us need to look younger, but more importantly feel younger too.
Here's an excerpt from the article that I would agree with.

That said, holding tension in one’s jaws or brows can make a face appear strained. I am a teeth grinder with a tight jaw. Mr. Seplow inserted needles into my jaw area to relax it. He also assessed my systemic issues. Red blotches above my cheeks, he said, were a sign of sluggish digestion, so he put needles into my feet and legs for this.

Many cosmetic acupuncturists pride themselves on their holistic service. “The way I look at it, your health is reflected in your skin,” said Anita Lee, a licensed acupuncturist who has a private practice that specializes in women’s health in Manhattan. Because acupuncture facials improve circulation and unblock stuck energy, Ms. Lee said, “they help people heal from the inside out.”

A Great Resource

I just finished reading the book We Carry Each Other. It described a website where anyone can set up a Care Page for themselves or others. It is for anyone going through life altering experiences, such as serious illness, caregiving for our loved ones, accidents and recent loss. As many of you know, when I lost Alan last month, my husband of 27 years, to Alzheimer's, I had all of you to comfort me. I can't tell you how your love and good wishes carried me! A blessing.
I can't imagine having to go through these stress filled experiences alone, so I wanted to share this resource with you. Pass it on to anyone who needs a virtual hug.

Have a Peace Party

My friend from the Peekskill Rotary invited a group of his friends to his home for a Peace Party. We were asked to share our thoughts, songs, poems and experiences concerning peace and unity. Nearly everyone, including old and young from many nations and cultures, shared their views. We all left feeling empowered and hopeful. In this season of Super Bowel parties, consider a wonderful alternative.
This is the Rumi poem I read:

A Great Wagon

When I see your face, the stones start spinning!
You appear; all studying wanders.
I lose my place.

Water turns pearly.
Fire dies down and doesn't destroy.

In your presence I don't want what I thought
I wanted, those three little hanging lamps.

Inside your face the ancient manuscripts
Seem like rusty mirrors.

You breathe; new shapes appear,
and the music of a desire as widespread
as Spring begins to move
like a great wagon.
Drive slowly.

Some of us walking alongside
are lame!

~
Today, like every other day, we wake up empty
and frightened. Don't open the door to the study
and begin reading. Take down a musical instrument.

Let the beauty we love be what we do.
There are hundreds of ways to kneel and kiss the ground.

Out beyond ideas of wrongdoing and rightdoing,
there is a field. I'll meet you there.

When the soul lies down in that grass,
the world is too full to talk about.
Ideas, language, even the phrase each other
doesn't make any sense.

~


The breeze at dawn has secrets to tell you.
Don't go back to sleep.

You must ask for what you really want.
Don't go back to sleep.

People are going back and forth across the doorsill
where the two worlds touch.

The door is round and open.
Don't go back to sleep.


I would love to kiss you.
The price of kissing is your life.

Now my loving is running toward my life shouting,
What a bargain, let's buy it.

Daylight, full of small dancing particles
and the one great turning, our souls
are dancing with you, without feet, they dance.
Can you see them when I whisper in your ear?

They try to say what you are, spiritual or sexual?
They wonder about Solomon and all his wives.

In the body of the world, they say, there is a soul
and you are that.

But we have ways within each other
that will never be said by anyone.

Come to the orchard in Spring.
There is light and wine, and sweethearts
in the pomegranate flowers.


If you do not come, these do not matter.
If you do come, these do not matter.

Our Fears

For those of you who may have missed the movie Coach Carter, my good friend Sheila read this quote to me and I wanted to share it with you.
"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our dark that most frightens us. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people don't feel insecure around you. We are all meant to shine as children do. It's not just in some of us; it's in everyone. And as we let our own lights shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."
We looked up the quote and found its source:
The "Our Deepest fear..." quote is originally from Marianne Williamson's book, A Return to Love: Reflections on the Principles of "A Course in Miracles"

What may be motivating apathy or action

Here's a small excerpt from this week's Speaking of Faith. I always recommend listening to the Uncut version.
Krista Tippett interviews Ingrid Jordt about her experiences in Burma.

Ms. Jordt: And so I'm feeling that we need to find new strategies. And the ways that the Burmese have undertaken the everyday strategies to everyday life and everyday suffering, I think draw on a number of — a cultivation of the number of key mental states. And one of them is compassion. And compassion is known in Buddhism as one of the four sublime states of mature emotion. And with compassion, a person feels inclined to show special kindness to those who suffer. Compassion permits us to perceive pain and torment and suffering in another living being.

But the thing that's interesting, and this is something that my Burmese monk teacher said to me, is that with a mental state, any mental state that's wholesome, but with a mental state such as compassion, there's always a near enemy to compassion. And the near enemy of compassion is sorrow. What's interesting about sorrow is that you're unable to do anything on behalf of another person's suffering. And compassion, on the other hand, allows you to feel that there is something that can be done. And so I feel that we need to cultivate here in the West — if we talk about apathy — our own mental states; if we feel outrage, that we realize that that response will create anger and only more hatred and violence.

Ms. Tippett: So you're saying we recognize our outrage also as akin to another possible reaction.

Ms. Jordt: What I'm saying, if our response to the crisis in Burma today as outrage, then we're responding with anger. And if we feel disappointment and hopelessness, then the response is sorrow and pity and apathy again. But if we have compassion and if we choose to cultivate mental states of truly the understanding of what it means that another being is suffering the way that they are in Burma, then I think it we'll undertake a kind of renewed activism toward making the case of Burma something that just doesn't disappear off the newswaves because we have also become apathetic.