My father is dealing with Lewy body dementia (same thing Robin Williams had) and it's terrible. His memory was bad, then came some terrible hallucinations, and now he's starting to have problems with balance and movement. He's 76.

He was in the hospital one time and they had him chained to his bed because they were scared he would hurt somebody. This is a man who never raised his voice to me even at my worst. I talked to him on the phone he begged me to call the police because he thought he was chained up in a barn that was on fire. The way he described his situation convinced me that it felt 100% real to him. The people around him were trying to kill him.

His medications have helped a bit with the hallucinations. He still sees people around his home and it scares him. The worst part though is that as bad as today is, things are going to get worse.

I just took a commercial DNA test because I'm pretty sure I'm at risk for the same end. I'll do what I can (although it seems like there might not be much) but ultimately I'm going to make sure I'm in control of the end.

If anybody here can point me to information or resources on Lewy body dementia beyond WebMD, I'd be very appreciative.

This is pretty accurate and matches all of my experiences with people suffering from this disease. It is hard on them in the beginning and then it gets to be harder on the relatives and friends. Nothing beats having the same conversation three times per day. I always figured that as long as it makes them happy that it should make me happy but people have varying degrees of tolerance for this and of course your initial relationship with the person factors in heavily there as well.

One of my grandmothers had dementia in her final years, so I watched her go through these stages. I think you've described the stages quite well. In the first two stages, she suffered terribly; I never noticed a stage 3. My grandfather put up a heroic effort to care for her at home well into stage 4, but eventually she had to move into a nursing home, where she spent several more years in stage 5.

But it looked to me like those were some fairly happy years for her. When she was of sound mind, she was always worried about countless things. Now she was cheerful, watching the world in wonder, and occasionally flirting with a fellow resident.

> occasionally flirting with a fellow resident.

Most of them do. Unfortunately, we also had some men in late-stage dementia who were pretty obvious about their sexual interests. Needless to say, this often caused problems with female residents. This is an incredibly different topic to bring up with relatives: we once had to tell the wife of a resident that her husband was happily grabbing breasts all day. Whenever something like this was brought to the attention of relatives, it was usual denial at first, and then accusations that the staff was responsible.

That being said, the neighboring nursing home (for old people without dementia) had an incredibly sweet case where a male and female resident, both over a 100 years old and widowed for decades, slowly started a relationship. By the time I was leaving, they were holding hands all day , going for short walks and he was constantly making her gifts of all kinds. They were like teenagers, completely in love.

This doesn't sound all that bad. There are people who lost the will to live in Nazi extermination camps or who died of radiation sickness from the atom bomb. Compared to those two, this is a very pleasant way to exit life.

I visited my father in a nursing home for years when his mild cognitive impairment had turned into full-blown dementia.

There was always at least one patient screaming to be let out, to go home, or that they were suffering in some way. Screaming the same thing, every ten seconds. Hour after hour.

One shouted "Please!" "Please!" over and over again, in a piteous voice.

Those are the ones who still have some speech faculty left. While I know that many were either unaware of anything (like my father at the end), or lived in some pleasant accommodation, there were several who went through agony.

It's more tough for the family than anything. My girlfriend works with elderly with dementia and says her residents are all still mostly happy despite the disease.

None of the patients I came in contact with over one year (around 20) had any pain. Physically, they were all surprisingly healthy.