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Making Sense of Alzheimer’s is a creative space for people to understand the past, present and future of Alzheimer’s disease. It is an evolving forum, a gallery of ideas, a museum without walls.

Still We Dance: Artist Charles M. Williams

By Charles M. Williams

I thought I had escaped, but something keeps drawing me back.  I am a baby boomer, born and raised in the small country community of Hattonsville in Portsmouth, Virginia. The third of eight children, we lived in a shotgun house with six rooms and no indoor plumbing. For me to find a quiet space where I could draw and create was a premium.  After graduating from I.C. Norcom High School, studying art at Pratt Institute in NY and ultimately receiving a BA in Fine Arts from Norfolk State College … I thought I had escaped.  A commission in the US Army, a tour of duty in Germany  — “it” drew me back.  I found myself at Norfolk State University where I earned a degree in education, taught high school and then became Artist-in-Residence for the Norfolk Public School System … but I was drawn away again.  Thirty years later I would retire from a Risk Manager position with Ford Motor Company.

Through all of those years I continued to draw, paint and create.  My parents told me it was something I did from the time I first picked up a pencil.  I thought everybody did, and they all seemed to be better at it than I was, so I worked harder at it.  Mother-dear passed away suddenly from a stroke in 1966 at the age of 42.  Daddy-O passed away in 2005.  It was through him that I first learned about this thing called Dementia and Alzheimer’s.  It took a while before we realized what was going on as we witnessed his memory loss, vehicle incidents, changes in temperament and his increased dependence on help with basic needs.  He had worked in the Naval Ship Yard for over thirty years so when we saw him (during moments of mental clarity) sit up, struggle to get air into those asbestos-exposed lungs and then say, “whew – boy oh boy” as he held his head in his hands, helplessly we knew that he was hurting.

Ultimately, his favorite place became the big green easy chair in front of the TV where he fidgeted with his wrist watch or fumbled through the newspaper in between naps.  The last time he recognized me was when I dropped by the house and this second wonderful woman in his life, Mae said, “Jake … who is this?”  From the bed where he laid on his right side he peeked up at me, smiled and at that very moment, I saw the memory light go on in his face as he said, “That’s Charles.”  And then he lay back on the pillow, pulled the covers over his head and went back to sleep.  That was the last time I would see him alive.  His was a “long good-bye.”

Uncle Raymond — the brother of my mother — and Cookie had no children.  Through 64 years of marriage theirs was the place and they were the couple in whose presence everyone wanted to be.  To know them was to love them for they were non-judgmental and he especially was a kind of “wise man.”  When they asked me, in the mid 90’s,  if I would look out for them when they got older, without hesitation, I said ,”yes.”  Their youthful spirits lead me to feel that they would never grow old.  I did not know that such a commitment would come to be defined as “Caregiver.”  So we did the Powers of Attorney, the Living Wills and Advanced Directives.  I was added to their bank account, and Uncle Raymond carefully explained to me what he felt I needed to know about their Veterans Administration, Social Security and disability benefits, should they need to be activated.  We even took care of final rights arrangements.  These conversations caused my heart to pound inside my chest as the more he explained, the more complicated everything seemed.  I questioned whether I would be up to the task.  Add to that the 650 miles between Kentucky where I live and Virginia, and the challenges continue to add up.

For Uncle Raymond, it became apparent that he was changing in 2007.  There were more trips to the hospital, lost keys and credit cards, disorientation and confusion, more and larger dings and dents to his car, and an admission to Cookie (his wife) that he was, “losing it.”  Because he would not listen to any discussion from me about decreasing his driving, I pulled their family physician to the side during a routine checkup and expressed my concern.  Convinced, the doctor told him he should no longer drive.  A couple of days later Uncle Raymond had a fall while in the bathroom that lead to a 5 day stay in the hospital.  On the day he was discharged (one in which I will never forget) I sat down with him and Cookie in their living room and had “the Talk.”  They did not know that during earlier trips to Virginia I had been visiting assisted living and nursing home facilities in search of a suitable place for them, should it come to such a decision.  I told them that I could not return to Kentucky, leaving them in their home, knowing what I knew.  They agreed and a couple of days later were transferred to an assisted living facility.

The goal isn’t to live forever; it is to create something that will.

The disease continued to take its toll on Uncle Raymond. I cannot forget, however, the many times he would shake my hand and was hard pressed in letting go while saying, “thank you Charles, thank you for all that you are doing for us.”   He was not a complainer but during one of his final trips to the doctor he was asked if he was having a hard time doing anything.  He responded, “I’m having a hard time trying to die.”  On February 1, 2013, he passed away.  Cookie misses him but reconciles within her mind that she would be selfish to want him to continue living with all of the pain he was experiencing.  Just the other day she told me she is ready to go and be with “Raymond.”

And so, my father had it, my uncle had it and it is in the family genes.  I thought I had escaped.  I told my brothers and sisters, my son and grandkids about the possibility that one or more of us may someday be affected by Alzheimer’s.  With all that modern medicine knows today, our best course of action is to prepare, and to keep a close eye on each other.

I heard somewhere that creativity is the spontaneous release of emotions through any number of venues.  When I see people living their lives … when I am around family, I work to be aware, and I try to recreate those experiences to form a specific moment in time.  When completed, a story is told.  When I combine my art with the possibility of the “long good-bye” that is Alzheimer’s, I am reminded of the quote; “the goal isn’t to live forever; it is to create something that will.”  And so, you see … I can never escape.

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