- The Enterprise
- The Recorder
Alzheimer's disease stops with me.
That was the takeaway message attendees heard at a National Alzheimer's Plan input session held at the College of Southern Maryland's La Plata campus Tuesday morning.
The National Alzheimer's Association's National Capital Area chapter held three public input sessions, one at the college, one in Northern Virginia and one in the Washington D.C., area to listen to stakeholders in the Alzheimer's community about what a National Alzheimer's Plan should include, according to information provided by the association.
The National Alzheimer's Project Act, according to the association's literature, was signed into law by President Barack Obama on Jan. 4.
The law will include a plan on how to address Alzheimer's and how to go about finding a way to a world without Alzheimer's.
Those affected by Alzheimer's in Southern Maryland spoke loud and clear about what they felt was needed.
Education and funding seemed to be at the top of everyone's list.
Many wanted funding for home care as caregivers spoke of their Alzheimer's-stricken family members as needing the comforts and safety of what is familiar to them — their home or a family member's home.
Dinah Goldring, of Waldorf cares for her 90-year-old father who has Alzheimer's.
Goldring said he never wanted to be in a nursing home and that she and her siblings promised they would not put him in one.
“He always talked about what he did for others,” Goldring said of her World War II veteran father.
Goldring said it's extremely hard for her to see her father forget all of the stories he spoke so fondly of from his life.
She said its difficult to watch the man who did so much to take care of his family become unable to care for himself.
“He brought us this far, I'm going to hang in there with him,” Goldring said.
She advocated funding for home care as others did.
Evelyn Robinson, of Port Tobacco moved from Alabama with her husband to care for her father who had Alzheimer's. While she also advocated for funding for home care, she advocated funding for the Charles County Department of Aging and similar agencies that she said do a great job in talking with family members about the disease and providing support.
“Whatever you do, don't cut their funding,” she said.
Members of the association along with Sen. Thomas “Mac” Middleton (D-Charles), Betsy Bossart, district director for U.S. Rep. Steny H. Hoyer (D-Md., 5th) and Charles County commissioners' Vice President Reuben B. Collins II (D) heard dozens of personal testimonies from not only family members who are caregivers, but caregivers from nursing homes, administrators and many more, each with a personal story of how their lives are touched by those with Alzheimer's and dementia.
Speakers Tuesday wanted education and training for medical professionals as well as education for the general public about the disease.
Middleton said the voices he heard Tuesday were those that Congress needs to hear.
He said many folks in government only see the dollars and cents when it comes to laws and policies.
“People in Washington need to hear what we heard this morning,” he said.
More so than looking for funding, participants Tuesday were looking to use the act as a means to get congress to focus on researching and educating to find a cure.
“I wish to ask Congress of the United States to fund research programs under NAPA, to find a cure for this disease,” said Bob Ketner, of Lusby.
Ketner, 86, has cared for his wife through Alzheimer's for 12 years, and during that time had to send her to Solomons Nursing home.
Ketner said a nursing facility can average from $85,000 to $100,000 a year, and that he went through a lot of rigmarole to become eligible for Medicaid assistance. He said he hopes the act and the plan associated with it would help to make some of that process a little more streamlined as “the paperwork was horrendous.”
Ketner said “lets hope that a cure will come soon so that others won't have to watch 12 years of physical and mental degradation of their loved one...”
More information on the act can be found at www.alz.org.