Something I didn't realize is: there could be hallucinations and delusions (visual and auditory) and some things were of a sexual nature. Later in the disease they start falling more often - they forget their walker or cane, getting out of bed to go to restroom in the middle of the night,... and they forget how to toilet, so frequent messes in bathroom and/or clothing, don't wash their hands, .... Also trying to find a good, reputable, safe facility for a loved one is extremely difficult. You never really know how a place treats their patients until they are in there. I've been very disappointed in our healthcare system and how our seniors are treated.

*Rarely discuss but should be …. I will first say SANITY for the CareGivers and the need for CareGivers meetings … *Putting all financial , legal and medical papers in order before the end of life .. Making sure there is a durable POA in place . Death It inevitably , but we don’t want to think about it .

Rarely people will discuss dementia openly and honestly- too emotional. The caregiver/spouse suffers as much as patient- maybe more because we remember....The lack of caregiver support is hard.

The defecating, urinating all over the place is the hardest thing for me. I can't afford Depends, and I find it SO hard to deal with the daily messes. He is 335 pounds, struggles to move around, and wants to eat constantly. Doctors are no help. I take care of him and do what must be done because I still love him, but I have not been "IN" love with him for several years. The man I was "In" love with is gone. This illness is EVIL.

I didn’t expect the violence and the complete change in personality (sometimes, at least). My husband was the kindest, sweetest, funniest man, and he never gave me a moment of concern until after his Alzheimer’s got more advanced. Then he turned violent, punching at me and trying to twist my arm to break it. The only thing that helped it be less dangerous was that he was no longer mobile at that point, but we still needed to clean and change him regularly so had to be within arm’s reach when he was in one of these states. He was put on seroquel when it started to get bad, but honestly, that just made him worse. He improved some as we weaned him off of it (with his doctor’s guidance, of course). We were lucky that we found a good mix of medications finally, and his last nine months or so were reasonably happy and he was more like his old self.