Opinions on speaking publicly about PWD

MrsAnnabelLee

I've struggled since my mom's diagnosis about whether it's proper to discuss her condition publicly, like on my personal social media. I have not done so as I've felt like maybe it wasn't the right thing to do. But then, its such a huge part of my life and sometimes I want to talk about it. I'm curious what your thoughts on this is and I'd love to hear from some of the members here who have dementia as well. Thanks.

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KawKaw

I can understand how leaving out a significant part of your life in your social media postings can seem unbalanced.

I agree that safety is critical.

People who read posts are not always friendly.  People do mine social media for information that can assist them in fraud and other crimes.

Can you limit access to specific posts to people you truly trust?  Not merely people you have friended, but people you know and whom you want to know your situation fully?

As a person with MCI and with possible progression toward dementia in future, I would be uncomfortable with strangers hearing about the challenges of my care and intimate details.  Not like here on this message board, where there is a measure of privacy.

I would want my caregivers to have support, though.  And that means sharing with trusted people.

I enjoy friendships with people I have met online.  I do not need to speak with them in person or visit often.  But I do require online access and phone connection.

I think my point is that trusted friends can come from many places, including online. 

Support for caregivers is really critical given the challenges involved.

I think if you could truly limit posts to people you know and trust, that might give you an outlet, allow others to share with you about your situation as well.  That would also allow your PWD some dignity and privacy.

star26

I don't think it's appropriate, useful, or kind to post this information on social media.

GothicGremlin

 People do mine social media for information that can assist them in fraud and other crimes.

This, exactly.

There's a huge privacy issue -- I know my sister wouldn't like it if I posted her personal health information on Twitter (especially if I used her name), even if my reasons were good. And even on this site I never refer to her by name.  It's annoying to refer to her as "my sister" all the time, instead of by name, but I'm protecting her privacy that way. And remember, unscrupulous people can mine this site too. It's public.

And then as KawKaw said, there's the fraud issue. The more information a criminal can gather about a person, the easier it is to social engineer that person.

It's tough because it's normal to want to share and discuss the biggest things that are happening in our lives, but it's not always the safest thing to do online.

 

harshedbuzz

You said:

 I have not done so as I've felt like maybe it wasn't the right thing to do.

Trust your gut. If something feels wrong, it probably is.

By social media do you mean Facebook or Twitter? A blog like the one Lickety shared here? I just don't feel like it is a kind or ethical thing to share details so publicly. You would be safer here or on another support forum like this or sharing or in an IRL support group which I highly recommend.

I have a son with high functioning ASD. Pretty early on I decided that his diagnosis was his story to share and not my own even if it did rock my world. I only shared where there was a need to know- teachers, his den leaders and scoutmasters who needed to understand from where he was coming. I applied that same reasoning to my dad's dementia- it took over my life for several years, but it still wasn't "my story" to tell. It would have felt disloyal to be sharing tales of nasty confabulations, aggression, accusations or incontinence where family friends, his former students and complete randos would have had access. Dad and I never saw eye to eye, but I felt I owed him that.

I had a couple of close friends with whom I could share. One of my dear friends was going through dementia with her own mom and we could compare notes over lunch. I used to check on mom when they traveled so I knew her well before. I also shared with my mechanic who knew dad and had been through dementia with his own dad. 

JMHO

HB

MrsAnnabelLee

Thanks everyone for your input. You've confirmed what I've felt.

Rescue mom

I very readily told people who know us, or do business with us or deal with us personally in any way, that DH has Alzheimer’s. But I would not post it online out to the world at large, where anybody/everybody could see it and know exactly who we are. No, I don’t do FB.

(I know somebody can always find stuff with subpoenas, expertise etc.; I’m talking about just in general). 

There’s just too much opportunity for mischief and annoyance if the whole world knows. Sales, scams—especially scams, and insurance issues come to mind as problem areas. Also, lawsuits if your LO with dementia gets in any trouble with others.

You can talk or vent  about it here, in support groups, and with friends and families.

Cynbar

If our roles were reversed, and I had dementia instead of DH, I certainly wouldn't want him sharing details on social media. Yes, it can be a way to communicate with a few close friends and family who want to share the journey. But it would also go out to people he knows who are not that close to us or certainly to me. That part feels like an invasion. My preference would be to use group emails or group text chains, where you can control exactly whom all the info goes out too.