On the Trail with Mom
Who Said an Alzheimer's Diagnosis
Has to Slow You Down?

 In 1996, Natalie was diagnosed with Alzheimer's disease, a progressive brain disorder that gradually destroys a person's memory and ability to learn, reason, make judgments, communicate, and carry out  daily activities. As Alzheimer's progresses, individuals may also experience changes in personality and behavior, such as anxiety, suspiciousness or agitation as well as delusions or hallucinations. Although there is currently no cure for Alzheimer's, new treatments are on the horizon as a result of accelerating insights into the biology of the disease. Research has also shown that effective care and support can improve the quality of life for individuals and their caregivers over the course of the disease from diagnosis to the end of life.

                  When my Mom and Dad were both diagnosed with Alzheimer's disease in 1996, I was floored. I went from anger to fear to being confounded and overwhelmed by everything that now had to be considered to take care of them.  Although I had a younger brother and sister and three young adult sons, and other family members who could help, I was ultimately responsible for making all the decisions concerning their wellbeing.  My goal was to keep Mom and Dad at home together as long as possible. 
                But by 1997, I could not ignore the fact that they were no longer able to stay at home alone. They were deteriorating mentally and physically.  Conditions in the house were getting worse and worse-things in unusual places-and their physical appearance was not good.  One evening Dad walked away from home when the fog outside was so thick that we feared we'd never find him.  He was found much later walking along a country highway.
                After exhausting all avenues for assistance, one of the most heart wrenching decisions I have ever had to make was to move Mom and Dad to an Alzheimer Home.  I remember that devastating feeling the first time I had to leave them and how the people living in the home looked so much worse off than my parents.  I decided right then and there that this would be short term, and as soon as I could I would move them some place else. 
                My relatives in Hampton, Virginia, found a really nice home in their area, so I moved Mom and Dad there.  The cost, however, proved to be more than I could maintain, with them in Hampton and me going back and forth from Atlanta.  As I got more and more behind financially, physically and emotionally, I realized I needed to make another change.  It would not be the last.
                During that period I had built a good relationship /friendship with a caregiver in Atlanta who worked for two assisted living homes.  With her help I was able to move Mom into one of the homes for ladies and Dad temporarily into the one for men.  By that time Dad was not even aware of who Mom was, and he could no longer walk.  I later discovered that he had been over medicated, which caused the loss of muscle tone he would never recover.  I had him taken off all medication, and he began to improve for a while, but then his condition worsened. Dad was subsequently moved to a nursing home. Because he qualified for Medicare, I was able to turn his assets over to the state so that I didn't have to pay the actual cost for his care, which otherwise would have been prohibitive. 
                Meanwhile, Mom was able to stay on at the assisted living home for nearly two years, until she began to further deteriorate and lose her ability to walk, too.  I wanted to move her to the nursing home with Dad, but her retirement benefits were just above the cut off point to qualify for Medicare.  So, once again I had to move her into an Alzheimer home where she could receive the level of care that she needed.  Fortunately, it was right next to the nursing home where Dad was.  At least they were near each other...for a while.                              
                Dad is no longer with us.  In 2004, he fell and broke his hip, which required surgery.  He never recovered following the operation and died that year. Prior to Dad's death, I had finally positioned myself to bring Mom home and found an apartment that was ideally suited for her to live with me.  She blossomed.  She was now a part of all the activity in the home and participated in everything I was doing-my workshops and classes, special projects and celebrations.  Everywhere we went people connected with her and included her on every level.  She loved every minute of it.  She could feel that she was still a central part of an energetic family and extended family, surrounded by young people and others who deeply cared about her.                
                Natalie Scott Williams was raised in Phoebus, Virginia, from age five through college.  She attended what is now Hampton University and was a proud graduate and an alumnus of over fifty years.  She taught in North Carolina for over twenty years at E.E. Smith High School and as an English Professor at Fayetteville State University.  In the late 1960's she and my dad, James Arthur Williams, and their children (my brother, sister and me) moved to the Virgin Islands where she taught at St. Croix Central High School and at the University of the Virgin Islands for over twenty years as an English Teacher and Speech and Literature professor.  The arts were her passion.  Cultivating the artist in everyone was her mission.                
                Mom was a phenomenal teacher and professor who took great pride in inspiring her students to write, create, and be the initiator of their fate.  She dared those she taught to reach for the stars and never settle for anything less than their heart's desire.        
               She would not have accepted any less of me when, in 2005, I had a dream to travel around the world on a 3 ½ year "walk for global peace."  As the vision for "The Trail of Dreams World Peace Walk" came forward, my response to the question of what to do with Mom was ... take her with me.               
                Mom and I always had a relationship that is a great friendship as well as mother-daughter relationship.  We have always enjoyed adventure together and, most importantly, we have always supported each other through everything that was happening in our lives.  As members of the "Trail of Dreams Team" began to sign on for the journey, it was apparent to me that the support necessary to bring Mom with us was there and that she would be a vital part of the group.          
                    The walk began in Atlanta, Georgia, on October 21, 2005.  It is a demonstration of ordinary people showing up to engage in a journey of the human spirit that is taking us around the world in 3 ½ years to affect global peace. Our mission is to raise the collective awareness of humanity as conscious choice-makers and to center people in their power to choose. One of those choices for me was to keep my Mom with me on this journey.  After a year and a half on the Trail of Dreams World Peace Walk, I don't think I could have made a better decision.  Thanks to my fellow walkers, Karen Watson, Tony Shina and Chandelle Binns, and all the people we have met throughout our travels, the journey has given dignity and grace to this chapter of Mom's life story.                     
                At 78 years old, "Mama Natalie," as she is now known around the world, is the matriarch of the Trail of Dreams World Peace Walk. She is an inspiration to the walkers and the communities through which they walk.  She teaches us unconditional love and how to be in The Moment.  She teaches us how to serve and how to find joy in the little things-which really are big things-such as a smile, a hug, a kiss, a clap, a well timed comment, beauty, and extending ourselves in a very personal way everyday.  She demonstrates it all the time.               
                She has an uncanny sense of people and what they are going through.  She will reach out and grab someone's hand and hold it, and sometimes kiss it, totally melting the person's armor and snatching them right out of their head into their heart.  Even in those moments when we have encountered what could have been difficult situations, Mom has used this same technique to disarm any such situation.              
                People often ask what I do for Mom in regards to medication.  At this time she is off all pharmaceutical medications. She takes certain vitamins, protein drinks, and lots of love.  I have learned that I know her well enough to recognize signs of change, for example, when her balance is off.  I am aware that sharing our life force is vital to the recovery and well being of everyone.  So, the greatest medicine we make sure Mom has is mega doses of the healing energy that comes to her through our sharing of our life force-LOVE!  How?                 
                We share everything with her. When we are camping in our tents in sleeping bags, so is she!  When we are at the rim of the Grand Canyon, so is she!  When we are sharing in a community traditional ceremony, so is she!  Though Mom may not be able to communicate verbally like everyone else, her presence is always powerfully felt by all.
                This experience is teaching me many things about Alzheimer's. Those afflicted with this disease are our parents, aunts, uncles, grandparents, and friends.  They need our touch, our smiles, and most of all to feel that they are an important part of our lives whether they are in nursing homes or still living in their own homes.  If we can move through our pain and expectations of them to be the same as they were before, then we can see them for who they are and find the beauty and grace in each moment we have with them, whether they appear to remember us or not.

I am holding the vision that Mom will be crossing the finish line in Atlanta with us at the end of the Trail of Dreams World Peace Walk on April 21, 2009, walking and singing all the way. Her favorite saying is "Thank me darling."  We do Mom, we do!

Throughout the Trail of Dreams World Peace Walk, we meet with traditional and indigenous wisdom keepers of the land, community leaders, spiritual leaders, youth leaders, and community service organizations.  In addition, we participate in community service projects. As the official Matriarch of the walk, Natalie is a central part of every activity, gathering, presentation, and celebration we hold.

"Being on this journey with Natalie has taught me about unconditional love: Love has no boundaries or conditions. She communicates this in many ways with her smile, her affection, her words. Natalie reminds me that elders hold the vision and wisdom of the world, and just because someone has an ailment of some sort, it does not stop them from LIVING. It is a great lessen and honor to take care of our elderly in a loving, human way. Being in an environment filled with unconditional love and constant attention extends one's life. Natalie keeps us laughing and keeps us grounded. We are reminded that the basic necessity of life-LOVE-is essential in the healing of any situation. - Chandelle C. Binns

"I remember one time we were on a silence fast. We got Natalie ready for the day and brought her out to have her breakfast. She shook her head and said, "...and nobody's even talking!" We all laughed out loud. She
has her way of reminding us to maintain a sense of humor. --Tony Shina

"She is so in tune to our journey. When we get to a point where we need inspiration and encouragement, Natalie will hold your hand and when she lets it go, not only do you feel better, you oftentimes will receive answers to questions that you have been pondering. Natalie will tune into you and help you find your way through a dilemma. She is a remarkable woman and a lady in every way. The time I have spent with her has helped me to know that this journey would not have been complete without her. Natalie teaches me to live in the moment. She teaches me  to live completely in the "now". One of the things that stands out the most for me is that if you really want to communicate with someone who has Alzheimer's, you can. If you take time to get to know them exactly where they are, then it can happen. I admire her daughter Audri in her care for her mother because she meets Natalie exactly where she is. Natalie, thank you for being a part of the Trail of Dreams World Peace Walk. Most of all, thank you for being the beautiful, caring, and loving lady that you are. --Karen Hunter Watson