In the closing time of my mother's life, I created and maintained a website about her. At the time, it had various purposes: to communicate with extended family across the country about here day-to-day life; to bring dementia "out of the closet," rather than suppressing it as a somehow shameful flaw; and to provide a view of her whole life, not just its decline.

The efforts were successful then. Now, it is six years since her death, and visitors are very rare. Simply defending the existing Wordpress website against continuing hacking became an effort of questionable worth. I was becoming more inclined simply to let it go.

Reviewing the situtation recently, I was struck that one part was of enduring value and interest: the diary of my mother's waning day-to-day life, and the involvement of family and friends. I am not able to find a similar chronicle.

So, I have recreated the site, nearly from scratch, but retaining the diary, with entries of transient interest edited out.

– Paul

The years of dementia were mostly happy ones

Beverly's sister, Janice, told me several times that the really important thing was for Beverly to be happy, and so in fact she generally was, during the last stage of her life as well as during the years before.

Beverly observed with dread the early signs of her mind slipping, but once she moved into frank dementia, she was oblivious of her state and, except when she had some particular pain or gripe, quick to smile.

Unshakeable faith

I often found people's dogmatic faith in my mother's mental capacity as frustrating as some religious zealots' certainty in their own flavors of dogma. To have successful empathy with another person, one needs to understand what that individual really is – to be able to see things through that person's eyes.

The end stages of Alzheimer's disease bring profound disability. The person affected loses most of his or her ability to interact with the environment at all. Understanding speech or recognizing individuals is out of the question. I frequently received the request from family members or friends, Give her a big hug from me. I gently tried to explain, in my mother's last days, that she tended to view hugs as threatening, and had generally lost her ability to tell one person from another. The response I instantly received was, she'll recognize a hug from me. Not so, unfortunately!

One family friend imagined that my mother had really built the web site by herself, perhaps with a little help from me for the pictures.

I tried to hint to an activities team member at the nursing home that my mother had come from the quiet of a Kansas farm and didn't generally like loud music. The team member told me how much my mother had enjoyed the music that they'd played. When I asked how she knew that, she said, "She sat there and listened!" – at a time when my mother was wheelchair-bound, unable to move herself at all. What choice did she have but to listen?

These are striking examples. On a day-to-day basis, staff members continually repeated commands that my mother couldn't understand at all, and explained things that she could no more follow than particle physics. And the staff members, unfortunately, sometimes took it personally or as a sign of stubborn lack of cooperation. – Well, we all experience things that are frustrating, that we can't understand, and try to cope with them with the futile tools that we do know.

– Paul