This book is our gift to others who are suffering through the extreme, emotional and physical challenge and hardship of caring for someone with Frontotemporal Degeneration (FTD). As the 26 year-old son of a 55 year-old father diagnosed with FTD in 1995, I was presented with a life altering experience. The love of our family and closeness we shared was the foundation for my decision to have my mother and father move into my home so my mother and I could care for my dad.
Three years was dedicated to a daily routine of complete care for him while attempting to keep going with my own life. This is the challenge of someone my age; to give up the spontaneity and freedom that one expects they would have. It was a difficult time, not only because of the time required to give great care to someone who cannot care for themselves, but due to the lack of resources and information about this family of degenerative diseases. Often, it was a full time job researching information and networking to get at the sources of funding, assistance and medical support we so desperately needed.
At the time, almost no information was available beyond a few sentences in a journal or a mention on the web. FTD was considered rare and lived in the shadows of Alzheimer's disease. Come to find out over the recent years, it is not so rare and many people are misdiagnosed with Alzheimer's disease. The difference in care required is quite dramatic.
Throughout the 3 years my father was home with my mom and I, we pursued finding a great deal of information, resources and medical professionals whom where dedicated to FTD research and care. It gave us strength to keep on going at a time when it was so tempting to want to give up. In the end, my father died at home by our side and we could have done nothing more to give him a dignified quality of life.
In the years that followed, there was a constant desire to do something with all that we had learned. A need to know that the helpless feeling of watching someone you love slowly die was not for nothing. This was the driving force for us to create a resource for others. A way to give support during their time of need.
It was a three-year process to create this book. We looked to all the experience we had and enlisted many of the professionals we had the good fortune to meet during my father's illness. Over 20 extremely generous health care and other professionals took the time to write chapters for the book. The goal was to create a comprehensive guide addressing every aspect of caring for someone with FTD. I think the book has successfully accomplished this.
As I reflect back on the experience, I feel satisfied. There is always the sadness for my father's death, especially since it was such a young age for both of us. However, to know that someone else can benefit by keeping their attention on a loved one rather than in the quandary of where to go to get help, makes my time all that much more meaningful.