Marie and Michelle,
I just completed reading your book. Thank you for sharing your journey with Bob. My wife Sandy developed FTD in 2007 age 58 (first symptoms we noticed). Along with FTD Sandy also developed ALS which I understand can happen rarely. Sandy died July 14, 2010.
Your descriptions of the events, feelings and coping were so much like the road we traveled with Sandy. My daughter and I became each other's rock then and now as we grieve our loss of such a wonderful wife and mother at so young an age.
I appreciated your concept of the "Old Bob" and the "New Bob" and the fact the this terrible disease effects are behavioral as opposed to memory loss etc that so many associate with dementia. Also your comments on even the medical community not fully grasping the disease at first as they have difficulty understanding dementia in a younger person.
Sandy did not have to be placed in a care facility but that was definitely on the horizon. The ALS developed and Sandy died at home under hospice care. I am thankful I did not have to go through what you did in having to move Bob away from home. Reading that was heart wrenching.
I also experienced Sandy not dying until I left her bedside.Just like Bob, Sandy would not go until my daughter, Beth, said "Dad you have to leave and go to another room so Mom will go" I did and Sandy left us 10 minutes later.
Thank you for writing this book that expresses so clearly what FTD is and the journey that must be traveled if it enters our lives.
May God bless you and your family,
Mark H
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