Pam and Bill

I have been caring for my husband, Bill, since his illness began.  He was a Navy Commander, retiring in 1995.  His illness hit very hard and very quickly in 2003, and we struggled for 5 or 6 years to get a proper diagnosis.  Finally Johns Hopkins Hospital diagnosed him in 2008 with Lewy Body dementia.  Prior to Johns Hopkins, his illness had been called an Alzheimer's-like dementia.  I knew it was not Alzheimer's.  I didn't know what it was, but this was not like anything I had every read, seen or heard of Alzheimer's.  It was a battle trying to find a doctor who knew about anything other than Alzheimer's.  I even had one doctor ask me "what did it matter what "kind" of dementia it was?"  I have been battling for Bill all these years and I am happy to now see organizations like LBDA finally come around and people starting to pay attention to the differences- because they are critical to the well-being of the victim.  He is now 63, confined to a wheelchair and hospital bed.  He has not spoken in years.  But I thank God every day that I am able to care for him at home.  The current time is actually the easiest it has ever been caring for him.  There have been periods of psychosis, aggression, severe decline- most all of it due to medications.  He currently is on almost no meds, he is comfortable and has hospice care in addition to my personal paid caregivers.