Toni DiLeone O'Connell
Toni O’Connell, has Alzheimer’s disease. Her diagnosis was not a surprise to her. She had gone to my Neurologist, Dr. Kaplove, whom she used to work with at Waterbury Hospital when she was a registered nurse. This time, she was his patient, which was hard to accept. Her symptoms began with typical forgetfulness, confusing things and taking longer to do certain tasks. It was when her memory started interfering with her work that it really became a problem. She had to quit a job she loved, which was devastating.
Toni wants to introduce you to another face of Alzheimer’s disease – those who have what is known as younger onset. She has 2 daughters, still in school, who now have to grow up in a different world. She has tried to explain it to them, and she thinks they understand – for now. Right now, mom is home more often and is deeply forgetful. She does not know what the future holds for them, or for her. She does not know if she will be able to be at their high school graduation. She’s a very upfront person. One of the things she always says about Alzheimer’s is: she has no other way of explaining it, other than it just sucks.
She is thankful for her husband and the support he has shown her. He has to work two jobs now that she can no longer work. This has changed things between them, but he has to do it if they still want to have fun with our girls, and keep things as normal as possible for them.
She is a realist. Alzheimer’s is awful. She’s cried, but there is nothing she can do about it. She takes the medications that are available. Unfortunately, she is unable to get into studies because she is too young. They start at 50, and she is am 48. She is the face of Alzheimer’s disease, and often one that is forgotten. This is not just an older person’s disease.
You should know that she has chosen not to take her diagnosis laying down. She is engaging in support groups and looking into opportunities to volunteer her time to help others. This disease hasn’t taken away her ability to have an impact on the world. However, as her disease progresses, and her husband needs to provide more care, she hopes there will be a program to provide him with the respite services he needs. She hopes there will continue to be support for care planning, and utilizing home and community-based services so that she may stay at home, with her family, for as long as possible. Lastly, there needs to be more support for children of parents who have this disease, or their grandparents.