Monthly Archives: August 2018

Dementia and the internet

I’m in the middle of a very weird, sad situation online.  A few years back, I was thinking about stopping dying my hair.  I was having to dye it every 3 weeks to keep the white/silver roots at bay, and I knew that couldn’t be healthy at all, so I did my online researching to find some support for the journey I was about to undertake.

I found a woman who had written a book on the very subject.  She had a website, and it had the rudimentary form of a message board on it.   But it was very antiquated.  I offered to start a more modern board for her.  She jumped at the chance.  The board was a huge success, but with so many women, we found ourselves craving to talk about more than just our hair.  The author was adamant that we keep it just about hair (and make-up and clothes and how that refers to our current hair color.)  She and I just weren’t going to see eye to eye on this, but she had very little computer savvy, so she couldn’t really ‘run’ the board.  I eventually found someone else willing to help, and because of the author’s ‘creative differences’ and mine, I just broke away from the group.

Several years passed.  (Six, to be exact.)  On a whim, I went back to the board, and it had become a visual nightmare due to the Photobucket mess of last summer.  Ironically, a newer member of the board I had never known in my past experience with it, had emailed an old, un-used email address that I had for internet stuff, as the administrator of the board, asking for help.  She said between the Photobucket mess, she had gotten into closer contact with the author, and even called her, and found out that the author now had dementia, and was in pretty bad shape.  She wanted to know if I could help her with the board-either help fix it/resurrect it, or turn the reigns over to her.  (she had no message board knowledge either, though.)  I offered to help fix it.  This was earlier this year.  A couple of months ago, we found the message board host had sold their system to Tapatalk, another larger host company that I’ve had really bad experience with.  Push came to shove, this new gal and I decided to move the board to another host altogether.  But we had to start from scratch, but we did.  (well, I did.  She has little computer savvy.  Much of my time away from blogging has been due to this.)  We have over 100 members now, about 20-25 that are pretty active.

The problem is, the author’s typing skills/internet skills has gotten progressively worse.  (to be expected with dementia.)  She still has a Facebook page, and on a whim late last week, even though I had deleted Facebook, I went to see how the page was going.  The fashion model who had been the face to the fashion world of women who grow gray/white/silver gracefully, had passed from cancer.  The author had tried to explain that to the group, but they didn’t believe her because the fashion model and her make-up company had chosen to hide her cancer, and even her death, in the initial days after her passing.  The author got progressively frustrated at people not believing her about the death, and mix that with dementia, and she started typing mean things, to the point she told the group they were ‘too stupid’ not to believe her about the death.

Of course, that set that group ‘off.’  They started calling the author extremely rude, started to believe her account and the whole Facebook page was hacked, and that’s where it had wallowed without anything further from the author for 3 weeks.

So, to try and save her legacy, I  created a new Facebook account.  I told the group that she wasn’t being (intentionally) mean, cruel or rude…she hadn’t been hacked, she had dementia.  I hated to do that, but again, to preserve her legacy, I felt I had to.  I first emailed the author and told her what I felt needed to be done, that she could do it or I would do it for her.  Her response was typical of her in dementia, admitting she had dementia, asking for help from me.  The only thing I could do to help was to type the post about her myself.  She’s incapable of doing that.

The site had gone so dead, only 2 people have responded.  The author posted ‘I am no longer associated with the board (my board).  You can’t win them all.’  (typical of her, ‘she’s using English, but contextually it really doesn’t fit’… dementia-driven posts.) (Because of this, I made it so she could only read at my board, she could no longer post.)  I also posted about the author’s dementia at our board, because I knew some people were at both sites.  At my board, either the comments have been very supportive of her, as well as me for having to be the one to speak up, or just no comment at all.

Her husband vowed when he retired he would never touch a computer again.  I gently tried to ask her to stop posting on the internet, since she was doing herself harm (her reputation), but she got very angry at me for that.  She vowed she would never stop posting.   It’s so hard.  21st century problem.  It’s like taking away the car keys from an elderly relative who, for whatever reason, should not be driving.  Only this is the internet.  She shouldn’t be typing.  But she is.

ugh.