#11 Loving lessons from a Caregiver

I learned that I needed to deeply look at and listen to Alan. Being so attentive allowed me to make good judgments and better decisions about what he needed. I could use this information to help make things easier for both of us.  For me to pre-judge what he would need invariably got us into trouble. There was no formula or blueprint for this. It required real contact with love and sensitivity.

My memoir Living on the Verge of Insanity describes how knowing what was needed didn't always mean I could accomplish it but at least I knew what to aspire to when I was feeling rested and generous of spirit.

#10 Loving lessons from a Caregiver

As I was caring for Alan during the later stages of his Alzheimer's, I learned that my imagination was great "medicine". There is much comfort and freedom in wonder and uncertainty, which I expressed with my meandering mind as I invented stories and created images. I let go of always needing to find answers because often there were none.

#9 Loving lessons from a Caregiver

I learned that nature is a healer for a caregiver's body, emotions, psyche and spirit. Mountains, lakes, turtles, air, snow, flowers, soil, smells, sky, moon, sunsets, stars, sand, birds, deer and rivers all do the trick.
I spent months writing my memoir Living on the Verge of Insanity outside in my tent cabana with Charlie the African Grey on the arm of my chair. We saw foxes, ground hogs, deer and even a coyote pass quietly by. Sometimes I felt like I was in the movie Fantasia!

#8 Loving lessons from a Caregiver

As a caregiver for my long time partner with dementia, I learned that power needs to be watched carefully and negative power needs to be controlled.
There is much trust of the caregiver by the loved one and it is important to honor it as trust. Wanting to be proud of my role as caregiver ultimately motivated me to soften and support Alan's dignity to the very end. This, mind you, was after living through some bumpy times.
I first had to experience the dark places in myself - my impatience, my lack of skill, and my exhaustion - to know I was a full human being with all that brings. But to grow from the experience I needed to find ways to work myself back into being a loving trusted caregiver and partner.
These important issues come in all shapes and sizes and I share lots of stories about how I was able to make the shift to a softer, more open hearted place in my memoir Living on the Verge of Insanity.

#7 Loving Lessons from a Caregiver

During my 8 years of caregiving I learned that allowing others to help me was a sign of my strength and self love. Life is meant to be shared and sharing all types of experiences is what breaths love into relationships.
So often in the early days I would try to imagine getting help with Alan and always came up with a long list of excuses not to. The excuses were mostly based on what I perceived to be other peoples' needs, never considering my own. Once I accepted love and input from others I realized that I had been depriving them of the experience of helping Alan too.
In my memoir Living on the Verge of Insanity I discuss the gradual shift in my views that finally allowed others to love and care for Alan. I saw that he brought music and humor to his caregivers for many years. I was finally happy to share him with them and get the help I needed at the same time.

#6 Loving Lessons from a Caregiver

I learned that living in the present is even more important when big changes are happening. It allows for moments of joy and connection that would be skipped over in a haze of worry about the future. Bike rides, quiet walks in the woods, a hand squeeze, a smile, all would have had a dark cloud over them if the future had been intruding.
In my memoir Living on the Verge of Insanity I describe how often it was Alan who would bring me back to the present by pointing out a turtle on a rock or a baby swan at the shore of a swamp. After a time I learned to have this awareness for myself and we were able to share many years of joy and love together by staying in the moment.

#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