My name is Karen, and I am the caregiver for my 42-year-old husband Mike, who was diagnosed six years ago at the age of 36. Ironically, I consider myself a caregiver and an advocate.
My husband suffers from early-onset familial dementia, meaning it runs in his family. He lost his mom and brother to the disease. My mother-in-law was 52 when she passed, and my brother-in-law was 43.
Because of the genetics of this disease, I decided long ago that I would do anything I could to raise awareness and tell our story. Even though this disease originated with older people, I feel that not enough is done as far as research and funding because the average person does not understand that this disease does affect younger people.
My husband is an amazing man. He is in the later stages of this disease, which means he can't do anything for himself. We have been blessed to have two wonderful aides that care for him when I am at work and on the weekends, so I can get errands done and spend time with our children.
Our children were 7 and 9 when my husband was diagnosed, and telling them was one of the worst days of our lives. Even knowing what was going to happen to him, upon diagnosis, my husband's only concern was how this was going to affect me and the children. He never gave me the "why me" or "poor me" attitude. He is the most unselfish person I know.
I consider our children his "co-caregivers." They know his schedule and his needs as much as I do. They are now 13 and 15 years old and have grown into loving and compassionate individuals. My daughter is flourishing in the honors program at her high school, and my son will be graduating eighth grade this year. While this disease has created havoc for all of us, our story is a testament that love can prevail.
We had always told our children as much as their age limit could handle. We explained that Dad had a disease in the brain, and that if he said or did something that wasn't right, it was the disease making him do it, not Dad. We tried to get them to understand better by saying that if someone had a disease that affected their legs, they would walk funny; same thing, but a different part of the body is affected.
We have been through so much these last six years. Mike was hospitalized for seven weeks in 2004 for his anger and agitation. Since then, he has been rushed to the hospital seven times for various medical problems: infected gallbladder filled with stones; dehydration; pulmonary embolism and DVT; seizure and collapsed lung; a 105 degree fever; and most recently, he almost suffocated. My children know our local hospital and their staff all too well.
We have become advocates by telling our story on "The Oprah Show," "Paula Zahn Now," "Long Island Viewpoints," and in other local venues (newspaper and radio stations). This disease 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 quilt panel for the Alzheimer's Foundation of America's Memory Quilt; and participated in the Long Island Alzheimer Foundation's candle lighting ceremony. We do all that we can, taking into consideration our limitations as caregivers.
My mother-in-law was diagnosed in 1985, and I remember how little was known about the disease back then. We have come so far, but we really have so much farther to go. Telling ours stories is the beginning and the only way we can put faces to this disease and make the voices of our loved ones heard.
God bless all Alzheimer families.