The Alzheimer’s/dementia word is “insight,” when the victim knows that there is something wrong. This can be very painful in the early stages, although even then the sufferer usually is strangely uncurious about the disease, even when enough cognition remains that there is some understanding.
Don and i had several talks about the disease although he strenuously believed that it could not kill. Not that i tried too hard to suggest otherwise.
Occasionally he would express appreciation for my ability to look out for him. Once early on we went to a movie about Alz which showed a man being admitted to a care home – i had thought it might be a way to tell him about the diagnosis – and his reaction was,”If i ever get that bad, take me out behind the barn and shoot me.”
Other times he assured me that the best thing i could do is put him into a care home and go find another man. For a little while, thankfully a short phase, he assessed all the men we knew for their worthiness, despite my protestations. That project too was soon forgotten.
As his disease “progressed,”-more Alz talk- his awareness mercifully became less and less. In the last year i don’t think he knew he was ill, has no idea where he was living, as far as i know – has lost all sense of time and place, except for occasional queries about his mother or the son who still visits.
So today it was a bit of a shock to find him standing in the middle of the lounge area, crying, saying “I don’t know what’s wrong with me. I can’t. … I can’t. ..”
He couldn’t formulate what was wrong but he knew it was not right and it was very confusing. He struggles and struggles because he senses the world should make more sense but his finest tool, his mind, the one attribute he always relied on, has failed him.
It was an insight I would give anything to take away from him again.
Eventually he pulled together and said “C’mon babe, let’s look around –maybe my son is up now.” And so he resumed the endless walking, endless searching – for what he can’t remember, except that it has been lost.