They call me Karen, and I take care for my 47-year-old husband Ben Taffer. Ben was diagnosed eight years ago with Mild Alzheimers at the age of 38. Based on this new information, I found myself as the caregiver and advocate for this disease.
My husband Ben also has some dementia. This means it must run in his family’s blood-line because his grandmother suffer from the same illness. He lost his dad and sister to this illness nine years ago. My brother-in-law was 72 when he died from the same illness in June of 2014.
The horrible genetics of this illness has pushed me to raise awareness of the crippling effects and tell my story to the world. Because this illness starts with people over 55, not enough is done by the government or universities as far as research and funding. The average person does not know that this illness can also touch younger people as well.
My ex-husband, Jerry, is an amazing man and great father. Unfortunately, he is in the early stages of this illness. This means he can’t do many things for himself and I need to help him. It’s a good thing we’ve been blessed with five fantastic aides that care for him night, days, and on the weekends. This allows me toI can get errands done and spend time with my children.
My kids were 5 and 11 when Jerry was first diagnosed. Telling them was one of the toughest days of my life. Even though my ex knew what was going to happen to him, upon diagnosis, he was only concerned with how things would affect me and the kids. He never whined or had the “poor me” attitude. He is the most unselfish person I know.
Our five wonderful children are “co-caregivers.” They know Jerry’s schedule and his needs as much as I do. They are now 16 and 22 years old and have grown into wonderful and smart people. My daughter is doing very well in her honors program in high school, and my son will graduate from tenth grade next year. While this illness has created havoc for the entire family, our story is proof that love can prevail.
We first told the kids as much as they could handle for their ages. We explained that Dad had an illness in the brain and nervous system, and that if he said or did something that wasn’t right, it was the illness causing him do it. We tried to help them understand better by saying that if someone had n illness that affected their arms, they would shake hands in a weird way.
We have gone through a lot over the past seven years with Jerry. He was hospitalized for eight weeks in 2014 for his anger and stress. Since then, he has been rushed to the hospital ten more times for various medical things, like: infected gallbladder filled with gallstones; dehydration; pulmonary embolism and DVT; and most recently, he almost drowned. My children know the staff at the local hospital very well.
We have told our story on “The Oprah Show,” “Paula Zahn Now,” “MSNBC,” and in other local venues (newspaper and radio stations). This illness is NOTHING to be ashamed of, and I feel the more stories that are told, the more that will get done.
We have participated in the Alzheimer Association’s Memory Walk; placed remembrances on the Leeza Gibbons Memory Wall; created a blanket for the Alzheimer’s Foundation of America’s Memory Quilt; and participated in the Long Island Alzheimer Foundation’s candle lighting ceremony.