Ending 3rd year

"Some people with DLB (Dementia with Lewy Boies) die within 2-3 years of diagnosis, while others may do well for 5-10 years," Mayo Clinic Patient Education.

We are coming near the end of our third year from the diagnosis of Dementia with Lewy Bodies.  A milestone from which I can take perspective.  Overheard recently was someone saying, regarding Dwane, "Isn't there something more that could be done?"   My fellow caregivers, I think you can imagine how I felt.  The reason Dwane is doing as well as he is is because of my advocacy.  Advocacy for some of the best medical care in the world (Mayo Clinic) -- he is even in a research project there because of my completing forms, advocacy for care with audiologist, physical therapists, podiatrists, alternative care practitioners, advocacy with insurance companies.  All of this in addition to setting up a positive and supportive home environment with good nutrition, positive tone, and support for some body movement.  I am not saying this to talk about all that I do; I am saying it on behalf of all caregivers.  We are advocating for the best possible care for the person for whom we are caregivers --- to give them quality of life in the midst of their progressive and terminal disease. 

So, as we end our third year, Dwane is doing better than I thought he might be; while I also see steady but erratic decline.  Difficulty handling the feeding process, so I have implemented different utensils.  Difficulty with walking, so I monitor that.  Most of all difficulty with judgment and reasoning, so I make sure he understands and I try to prevent dangerous activities -- like fixing his disabled motorcycle that he would like to ride.  It feels like we are slipping downhill faster in recent months.