"We are marching out of the shadows and into the light to expose this disease"
Stone Benches: Understanding the Invisible Footprints of Dementia
This is precisely what was accomplished yesterday as a group of 14 of us met with each of our Congressional representatives and United States Senators. The Alzheimer's Association had specific "asks", which lined up perfectly with what I have been hearing on a daily basis from families and Memory Care staff.
We need funding for research,
as well as support for our families and training for staff.
In an unprecedented response, our two Senators accepted our request to co-sponsor the Hope act, which will provide much needed planning services for families, support for caregivers, and education for our Memory Care staff. They will lead the way in getting this bill passed in the Senate. I am proud that Oklahoma is at the forefront of this crucial step in the right direction.
The House was not in session, so we met with staff members. Due to the interest and encouraging support we received from those with influence in these representative's offices, we expect support to come from the House as well. Our requests are significant, including additional funding for research of $400 million this year. We believe if this money is not allocated now, trillions of dollars will be spent within a decade on Medicare expenses for this disease.allocated now, trillions of dollars will be spent within a decade on Medicare expenses for this disease.
This disease is of epidemic proportions and cannot be ignored.
We are so grateful to the Alzheimer's Association, as well as the dedicated members from Oklahoma who have been down in the trenches preparing this groundwork, developing relationships with our leaders, and battling for all of us who walk alongside the invisible footprints of dementia. It was an honor to sit in the room with polished, passionate professionals who have been advocating in Washington D.C. for years.
We joined these seasoned advocates and provided a strong presence of numbers in the room. Three of us, daughters representing our veteran fathers who battle the effects of of this disease on a daily basis, along with a hospice director, memory care director, and memory care aide let our nation's leaders know Oklahomans are passionate about this cause and ready for answers!
"It is going to take all of us telling our stories.
Standing up and saying, "I've had enough of this heartache!"
Stone Benches, pg 291
Our nation's leaders heard our personal stories; each member also received a copy of Stone Benches. Two of the staffers shared their personal connection - their grandmothers have Alzheimer's disease. Not only were our stories shared, our emotions were felt as well. We witnessed tears in the eyes of these professional men and women who lead our country.
Meanwhile, back at Memory Care, my daughter was feeding her grandfather lunch. Rex looked at my dad and said, "That's your daughter?" Dad responded, "No, that's your daughter." "Oh, my daughter!" Rex replied, "Thank you!"
It took an army to care for our fathers while we were gone. Ural's daughter, Cathy, is blessed with sisters who visited to feed him and take care of his daily needs. My husband fed my dad, wiped his nose, and joined Rex and Dad's dining room antics, as did my daughter and son-in-law who live nearby. We are so grateful for the support of family, friends, and memory care staff who assured us of our dad's loving care in our absence.
Thank you to all who prayed for this journey - your prayers have been heard!
#StoneBenches #TheyHaveAName #EndAlz #AlzForum #WashingtonDC #Capitol Hill
#HOPE #MemoryCare #Rex #MyDad #AlzFamilies