Standing in front of a crowd in early October Virginia McCone offered the kind of advice she wishes she could have had years ago.
When her mother was diagnosed with Alzheimer’s Disease there were few resources available, and one who became the primary caregiver for their loved one could have feelings of isolation as they said the long goodbye.
“My mother was my best friend,” she said. “She had eyes that just sparkled, and he had a beautiful smile.”
Yet as time went on McCone knew her mom was losing ground, and so she watched the years go by as the mother she knew became someone different.
Yet, there were those special moments McCone said she cherished during that long struggle with her mom.
“My mom loved ice cream,” said McCone, author of “Butterscotch Sundaes: My Mom’s Story of Alzheimer’s.”
McCone said she spent time journaling during those days, which she continues to do today, and it is those journal entries, along with the photographs she has of her mother, which created the special memories she shared in her book, as well as the second book she wrote entitled “Come With Me.”
“I lived the story,” said McCone, explaining why she decided to write the books and does speaking engagements. “I want to share my experience and to be an encouragement for others who are facing today what I faced all of those years ago.”
McCone said she strives to make her presentations personal, because she be-lieves those who are facing the realities of Alzheimer’s Disease and other types of dementia need to know there are others they can relate with and talk to about what they are going to face.
Being a caregiver for someone who has been diagnosed with dementia can pose myriad challenges, and McCone said what she wants to share through her books and presentations is what she has learned over the years.
“It is a journey,” she said, adding while there were some technical resources available at the time she was caring for her mother, that personal side was missing, and that is what she de-sired most.
When McCone does her presentation, she also takes time to do a book signing, and during those times she has the opportunity to speak with others who have heard her story.
Many times, said McCone, there have been people who have come up to her and then began to tell their story to her.
“When people start telling me their story I feel like I have made a connection with them,” she said. “They pour out their heart to me, and I then offer some words of encouragement that are from my heart to them.”
Page 2 of 3 - McCone said what really helped her through that time in her life was her faith.
“God was my strength,” she said. “I look now and see just how amazing he was for me at that time.”
McCone said it is her Christian faith that compels her to help others.
“I want to use my speaking to inspire others and raise awareness,” she said.
Sharing her story, said McCone also helps her.
“It helps me remember the trials and the blessings,” she said. “I think I get more out of my speaking sometimes than the people I am speaking to.”
McCone said she has so many special memories of the time with her mom, including those times when she would just sit down and enjoy a butterscotch sundae. It was in those times when McCone said she saw the sparkle in her eye again.
McCone said her second book “Come With Me” is a manual of information she has learned over the years, and she hopes it is helping others learn about the issues they are currently or may be facing.
There are so many important things McCone said she has learned.
“Alzheimer’s Disease strips away your dignity,” she said. “It robs you of your ability to communicate, reason and understanding.”
A lifetime of memories are lost, she said, the farther one is taken over by the disease. Those, said McCone, are the saddest parts of watching a loved one as they digress.
She said when one has been diagnosed with Alzheimer’s it is not only the person with the diagnosis who is impacted.
“It really takes over the whole family,” said McCone. “It becomes a tremendous emotional and psychological burden to bear.”
The good news is one does not have to bear that burden alone. There are others who are dealing with the same issues as caregivers, and it is important for those who are facing those overwhelming feelings to get help and talk with others.
McCone is available to speak to groups, and those who are interested in having her speak can make contact with her through her Web site at www.sodhouse.org.
McCone said she is currently thinking about writing another book that would address another issue she and her family have been facing in recent years.
According to the Alz-heimer’s Association, dem-entia is “a general term for a decline in mental ability severe enough to interfere with daily life.”
It is not a specific disease but a general term for a variety of different issues.
Page 3 of 3 - Among the issues is what is known as Alzheimer’s Disease. According to the Alzheimer’s Association, “Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.”
Statistics show Alzheim-er’s disease is the sixth leading cause of death in the United States, and more than five million Americans are currently living with the disease. One out of every three senior citizens dies with Alzheimer’s Disease or some other dementia.
The Alzheimer’s Associ-ation also reports more than 15 million friends and family members provided more than 17 billion hours of unpaid care to those who have Alzheimer’s Disease or some other dementia just in 2012. With a value of more than $216 billion. Alzheim-er’s Disease is not just diagnosed in seniors, as people in their 40s have been diagnosed. Learn more about dementia and Alzheimer’s Disease on the Alzheimer’s Association Web site at www.alz.org.