My motivation for writing Stone Benches: Understanding the Invisible Footprints of Dementia was the hope that one person might be encouraged to carry on - one family would gain a little insight and find the strength to make decisions they face. As books begin to arrive in readers’ hands, I am hopeful this is beginning to occur. I have had the privilege of witnessing my publisher as she found the courage to take the first steps of this disease with her own mother.
This morning, however, I woke up with an overwhelming realization. Perhaps today one of the forty-four million victims of #Alzheimer’s disease in the world would have a better day because of this book. Perhaps they would be responded to a little differently, understood a little more. Possibly they would experience frustration a little less because of some insight gleaned from this writing.
It is my hope someone would be enjoyed and valued a bit more today.
However, I cannot talk to them - they are not my audience. I cannot tell them they are right and you are the one who must change. They will never hear me say the essence of who they are and the value they possess is acknowledged. The only way I can get this message across to those affected with this disease is through you.
This is what the trip to Washington D.C. is all about. Making life better for them by bringing understanding to this disease and gaining the support it deserves. Admittedly, the victims of this disease are not the easiest folks to understand. Often their behaviors are socially unacceptable. They have lost the means to relate their experiences in the manner we are accustomed to.
Tom experienced this frustration on a daily basis. He was highly agitated and sometimes aggressive. Most did not want to deal with the challenges of his behavior, therefore, he was moved many times. Melva is going to Washington D.C. as a representative for Tom and all the victims of this disease who are misunderstood.
She understands every behavior is a form of communication.
Melva looks for connections between the patient and their past. This is why Tom carried a briefcase, sat in on meetings at Memory Care, and looked over floor plans. After all, he had designed buildings and overseen their construction all his life. Melva sought to give him a little piece of his life back.
We believe it is important for our nation’s leaders to hear, not only from family members, but from those involved in all aspects of relating to those affected. We will voice concerns for training of aides, laws affecting patient care, and recommendations for Memory Care facilities. We will be a voice for misunderstood folks like Tom.
We want to help family members and staff understand life from Tom’s perspective, in order to unselfishly provide moments of comfort and enjoyment for those affected. In order to do this, we must stop saying no and start looking for the reasons behind the behaviors. We must start enjoying life with these folks in their reality.
#StoneBenches #TheyHaveAName #EndAlz #AlzForum #Washington DC #Capitol Hill