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.

43 thoughts on “Dementia and the internet

  1. Kay

    I haven’t had any experience with on-line boards and can barely keep up with my blog. It was certainly kind of you to try to help.

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  2. Silver Willow

    I knew it would cause more grief with her personally, but I was still trying to look out for her, and the group of women she organized and led in their transition. 😦 Thanks.

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  3. Wendy

    Aww, Silver Willow, you've done as much as you could. Actually, you've gone out on a limb, gone out of your way to support someone in her time of need. As you can't do anything about her dementia, all you can do is let things unfold as they will. I take my hat off to you for accomplishing so much and with such grace and patience, not only for the original author of this board or group, but for many others as well. One day she will not be posting. Those who don't understand or choose not to will not miss her, but I'm sure you will.p.s. found you by way of Anvilcloud and liked your name. My FB name is Wendy Willow (I chose willow, it's not my real name)

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  4. Peace Thyme

    What a sad story. I don't personally participate in any boards but I imagine it has been and will continue to be a problem for you unless she really understands and ops out from any further posting. And, that would mean acknowledging what is obvious to others that she is not what she once was. Too bad. Sorry for this agitation and trouble for you.

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  5. Silver Willow

    I guess I explained myself poorly. Her posts at the message board have been few, and mostly a little gibberish-like. Nothing rude. The rude posts were at her own Facebook page for her book.I've set her member setting at my board such that she can still read, but she can't post. I'm not sure she'll even notice. Many of her posts have been of the 'I can't do this' type. 😦

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  6. Silver Willow

    Her inappropriate posts were at her Facebook page for her book, not at my board. At my board, her posts have been sporadic at best, and slightly gibberish. Not hostile or mean. And now I've fixed it so she can't post there anymore. And told the board in a 'prayers' thread about her condition. Hopefully that covers it for the board, anyhow.

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  7. Jean R.

    I used to be a message board administrator, mentor and on the board of directors of a site with over 2,000 members. Running any kind of message board is not something someone with dementia could do for very long. The years from the onset to that point, though, are very sad and frustrated for those who have to watch the decline.

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  8. Olga Hebert

    How sad, I never eve n considered how dementia might be played out on the internet. I hope somebody stops me when the time comes, Maybe I should put that in my advance directive. I'm not joking.

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  9. tammy j

    wow. bless her heart. I've heard they do have moments of lucidity but then go right back to the fogginess and confusion of dementia. so sad! and terribly difficult for you.and I think you must be talking of the leader of the Pro Age Revolution… Cindy Joseph who died of cancer recently. I discovered her years and years ago and had followed her and used her Boom Silk products ever since. She was wonderful! so inspiring.I truly think she was a breath of fresh air for all women to feel comfortable and happy about themselves! but in a way it's sad that they decided to hide her illness and all news of her death after the initial announcement. people felt close to her and it hurt. she will be missed. they're continuing her work with real women doing cameo clips. still… it's sad.

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  10. Anvilcloud

    I wish that relatives of dead people would remove them from Facebook. I mean after a certain time. Post a notice, let it sit, and then eventually remove them. But maybe it's just me who feels that way. Well it must be.

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  11. Silver Willow

    Indeed. Yesterday I private messaged all those on the Facebook page that had commented (one way or another) about the model's passing, and let them know and invited them to join our board. The author has killed the Facebook page. All so sad.

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  12. Silver Willow

    Yes, 'the model' I was referring to was Cindy Joseph. I understand the desire to keep illness private, but when you are the very, VERY public face of a trend-setting company, their handling of her passing was certainly less than ideal. Very sad.

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  13. Silver Willow

    Actually, I am not sure how I feel. I understand what you say, but I wonder if having someone's Facebook page still available, and all their posts and photos available, wouldn't somehow help keep their memory alive. It might be too tough in the beginning, but in the long run…. I guess I can see both sides.

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  14. Wendy

    Me too. I'm drawn to willow trees. Love that they live by the water, their branches reaching deep into the ground and up into the sky to connect heaven and earth. Their soft, pliable branches are good to swing on (whether you're a child or not! LOL), and apparently they symbolize birth and death – the circle of life.

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  15. Nance

    These are the kinds of sad situations that no one would have ever thought about a generation ago. Managing one's virtual legacy is a whole New Frontier.An online friend of mine recently died, and I was fortunate in that her family was kind and gracious enough to let me know via email. I don't know if it was in her Plan or not. But I do know that it's something for Online Presences to think about, and I have.

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  16. Arkansas Patti

    I know nothing about online boards but admire you for trying to save her bacon so to speak. I was thinking “car keys” before I got to the end of the post. I wonder if I will know when to hang up my keyboard.

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  17. Joared

    I haven’t been involved in any online boards. Seems like you’ve gone above and beyond all you can do. If her husband is unable, or unwilling to address her computer issue I would think it’s out of your hands.Dementia can gradually emerge in very subtle ways long before fully recognized and formally diagnosed. Whenever I see or hear about out of character behaviors, rather than condemn the person, I often wonder if something going on neurologically (due to meds, tumor, disease – a multitude of things). Family and close friends may see someone who they describe as becoming more stubborn, disagreeable, a multitude of different little behavior changes, any one of which they’ll say, “Oh, he or she was always like that, but has just gotten worse” in denial of what’s really happening. That said, doesn’t always mean they have dementia and may just be becoming crabby, or more docile for other natural reasons. Also I’m a strong propoent of natural aging including for me as a redhead. My hairdresser was busy dying her hair my color for several years. (Though a decade younger than me she has had to retire, becoming rapidly worse, and husband now has dementia — she is now on O2 24/7 as has COPD + other respiratory issues from all chemicals used by herself and clients etc. to which she was exposed all these years — doesn't dye her hair any more — a real downer for her — she brought in and demonstrated effectiveness to me years ago that eyebags/wrinkle reducer as she always wanted to look younger for her high school reunions). I was tempted to let her dye my hair years ago her color mix was so natural-looking when my red began to change. Then I remembered how so many of my older women patients became upset with the gross change in their appearance when they developed various health issues unrelated to their hair dying, but couldn’t keep hair colored (in hospital, rehab settings, even at home) — their self-image depressed, as if they didn’t have enough other issues. But to each her/his own and what each wants to devote their time and energy toward. 😉

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  18. Beatrice P. Boyd

    Kidos tonyou for trying to help out, which is all one can do and if the person doesn’t accept or want help then that is their decision. It is indeed unfortunate that many people would rather hide any illness than to share and possibly receive support that could help them greatly.

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  19. Sally

    Dementia is a sad ailment. My dad had Alzheimer's, or so they said; I always attributed that a stroke the year before he passed, was the reason he just gave up. You were a kind friend; I applaud you wanting to help someone who no longer could help herself. xoxo

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  20. Silver Willow

    good idea, Nance. My husband knows where all my passcodes are. And after I retire, I'll be sure to have a longer talk with him on the specifics of what I would like him to do, at some point, when he's ready, after I pass, re my online presence, and what to do if I become senile first.

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  21. Jeanie

    It's a sad situation and I admire all you did to rescue it. If it was me, at this point I would withdraw from the situation. It isn't making you any more calm or at peace with yourself or her and it sounds like things are disintegrating. Do you all really need the message board anymore? It is more likely to save relationships if you do. You can't stop a train. She will post. She will alienate others. It's a dreadful disease and it isn't her “fault” as such, but it simply is what it is. Sometimes you have to let go.

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