Follow
Share

I'd like an opinion from those of you in the care-giving trenches about whether or not you think it's "ok" to include people with cognitive impairment and anyone else with consent limiting conditions, in your online postings.


This is why I'm wondering. Pops has always been a ham. Even before his brain injury he loved to be goofy in videos, photos etc. As with most of his strongest personality traits this has only been amplified by his cognitive impairment. Pull out a camera and he lights up. He loves to be the center of attention. He loves to see videos of himself being silly and will hop on stage to do very bad versions of karaoke etc. It gives him joy. Our adult children sometimes post videos with him in them on social media. I don't try to stop them. They aren't hurting anyone by doing so. I generally only post photos, videos etc with the consent of those in them and tend to blur out or otherwise obscure photos of my grandbaby who is too young to consent. As to pops, I generally don't use his name, personal details, or even his photo online and I have mixed feelings about doing so. It's not that I think it's wrong or right to do so, it's just that I'm still deciding how I feel about it.


However, I'm starting a YouTube Channel and plan to put videos of our travels with Pops and other family members on it. Blurring his face out of every single moment of every video would be a lot of work and defeat the purpose of the videos showing family. It also seems cruel to remove him from the videos, knowing how much he loves to be the star of the show. The audience will primarily be our own family who have chosen to be in the videos. However, I'm well aware that one can't control the audience when something is posted online no matter how careful one is. Some of these videos may be helpful to others traveling with a loved one who is cognitively impaired too. I'm aware of what the laws allow, I'm aware of what his doctors tell me will work for him, and I'm very well aware of Pops needs, what gives him pleasure, and what his limits are. I'm not looking for answers about stuff like that. I'm just interested in your personal opinions.


Basically, a personal opinion, from your heart, about social medial posting is appreciated.


Thanks,


(I'm putting this under Senior Activities because there is not a "social media and seniors" topic that I can find.)

Find Care & Housing
Op, I kinda am but not to the degree you might think fussing at you, but gently. I have seen GOFUND ME s, posting videos, pics, of portrayed long suffering caregiver. I personally fund that in very poor taste.

And I am wearing my pearls with gusto!
Helpful Answer (1)
Reply to Segoline
Report
faeriefiles Mar 24, 2019
I didn't think you were fussing at me. I thought you were sharing your opinion and everyone gets their own opinion without any condemnation from me. I might not agree but I will never try to stop you or hate you for believing what you wish to believe. An opinion isn't a personal attack. It's just an opinion. Yours made me think about a bunch of stuff and that is great.
You did not find a Go Fund me of me. ;P They take like 20% of the money and if I'm going begging I want to keep allllllll that lovely cash for myself. Bwah ha ha It must take some serious guts to do something like that.
If I ever got really desperate for cash, I'd be more likely to sell myself in old lady porn than I would be to set up a go fund me account.
(2)
Report
See 1 more reply
Op. The racial argument in the B Smith issue is a red herring. There's a creep factor there, amongst others. What else is fodder? Cancer. Diabetes? Colonostomy? Stroke? Downs?

There are things we have to bear in life. All by ourselves. There's no,pep squad, save for this forum. There's no audience online, you poor thing.

Casting no aspersions. Sometimes you bear it singularly.
Helpful Answer (1)
Reply to Segoline
Report
faeriefiles Mar 24, 2019
I've got a huge pep squad both online and off, yes I know I'm blessed not to have to bear it singularly.
(0)
Report
When my dad developed ALZ I used to post pix of him having a good time,, eating, smiling, visiting his grand daughter. Now that mom is frail and getting slippy I post pix of her in the same way. I want people to know they are still with us and enjoying what is left of their life. I don't post pic of her ( or dad when he was still with us) that are embarrassing in any way. Just nice ones. I think intent is the issue here.
Helpful Answer (2)
Reply to pamzimmrrt
Report
faeriefiles Mar 24, 2019
I think intent matters a lot. I think content matters too. I've always shown and asked my kids whether I could put something on my blog or on other forms of social media before posting. Even when they were small they always had a choice. If I'm making a video to post online I always ask everyone in the room if that's ok with them. I'm still undecided on posting videos of pops but if I do there will never be anything on there that would be embarrassing to the him he used to be. I say it that way because at this time he'd think it hilarious to have just about anything posted.
(1)
Report
I see people videotaping everywhere and all the time, and if they plan on posting that footage anywhere, unless the law has changed they are all performing illegal activities.

I did professional audio/visual production for years and by law we had to put a big poster board up, every entrance and walkway, where anyone coming into our camera lens could see, that they were being videotaped and entering was giving permission to use their likeness. Most people thought it was a hoot, those that didn't went around.

My point is everyone is posting stuff that has people that don't even know they are being recorded.

Pops playing the silly shows he knows he is being recorded and it is understood that it will be played back, he watches the videos, equals understanding to the best of his ability.

Anyone think Terry Shivo knew the news was recording her and showing the entire world?

Fairiefires, I think that you have a great idea that could help others feel less frightened about taking a loved one out and about, and provide information on how to deal with situations that would otherwise be a live and learn.

Being POA gives anyone the authority to do for us as we would have done for ourselves. Hams love, love, love cameras.

I would love to see some. I can always use a good laugh.
Helpful Answer (1)
Reply to Isthisrealyreal
Report
faeriefiles Mar 24, 2019
I think most states have laws that define the expectation of privacy issue some going into great details on where you can expect privacy. However, as you said, that doesn't apply to photos or videos made by you that you might be making money on or using in some professional sense. I think that's why people get away with posting publicly taken videos of strangers on Facebook or YouTube but not in monetizing such videos. Oddly enough what can really get you into trouble in almost every state is if your camera picks up conversations, because most states have much stricter laws for voice than for images. Media is nearly always exempt. As I said in my post I have a handle on the legal aspects I'm more fishing for the opinions and reasoning of others on this because I'm still on the fence. I do have the paperwork to make choices for him I'm just really bad at making most choices and have to take time and gather input before I decide. The adult kids are all on board and most of them are already using photos and videos of him online. Your point about others seeing the videos and feeling ok about taking their loved ones out in public is a really good point. I don't want him to ever feel that we are ashamed of him.
(0)
Report
See 1 more reply
Search this forum for B Smith, twitter and FB. If the person can consent, that's one thing.

What is your purpose in posting videos about your LO with cognitive decline. Ask yourself, honestly. First question is can that person, the subject of video, consent? If not no.

Are you trying to show how hard this is? On whom? You? Your LO?

BUT again, can they consent to signing legal documents at this point? If not, there you have it. My opinion is you are exploiting if they cannot consent. And at some point they won't be able to.
Helpful Answer (1)
Reply to Segoline
Report
faeriefiles Mar 24, 2019
I searched for B Smith, duh, I could have done that before asking what you meant. Sorry, idiot moment there. I found some news articles online popped up about a guy moving his girlfriend into the home of his famous wife who has a cognitive impairment. Not our situation but interesting reading. Even if I wanted to move a boyfriend in I don't have one. Seems her fans were morally outraged about him having a girlfriend, moving her in etc. and also really peeved about his girlfriend being white. I try not to judge what others do to make their family situation work for everyone and I have no dog in that fight. I didn't read every article as their situation isn't mine. Thanks for sending me that direction though because I'm always interested in peoples reactions to those living outside the box and I'll read more about it later. I'm trying to decide how to respond without making this too long so I am going to post a few responses and you can reply to any that have meaning for you.
(0)
Report
See 2 more replies
I am back after a necessary break. I refer you to the B. Smith issue.
Helpful Answer (0)
Reply to Segoline
Report
faeriefiles Mar 24, 2019
I don't understand what you mean?
(0)
Report
One of my pet peeves is all the personal information, pictures, relationships that get posted to social media. I am in the midst of this now with my oldest daughter. She was just divorced and started to post about a new relationship she has. That son-in-law does the same thing.

Talked to my daughter about it telling her how private stuff should remain private. My daughter has now stopped posting this sort of thing. We will see if it stays stopped now that they are on spring break with both sets of kids.

My son-in-law does the same, actually it is his new squeeze that posts stuff that just over the top gushiness. I am ready to unfriend him because of all of this.

If it is a group of people, then even one not agreeing would stop it.

If you want to share these videos with family only you could setup a Facebook group that only members of the group can view. But, I certainly would not trust FB.

If you want to share what about a Dropbox account? You can then invite those you want to be able to view what is in the box. They in turn could make deposits to the box. There are also picture sharing sites that can be shared with a specific audience, like Flickr and Photobucket, don't know if they work with video, but there must be something similar for videos.

Course with any of these options there is still risk of getting hacked and them being shared far and wide.
Helpful Answer (2)
Reply to gladimhere
Report
faeriefiles Mar 24, 2019
I'm more interested in your opinion about making the photos/videos available at all. Even privately. You seem to vote no on that? I get it. Oversharing can be annoyingly unsettling. It's easy to cross into the area of Too Much Information when sharing and everyone has different levels of sharing that they are comfortable with. What level of sharing are you comfortable with? Is a birthday party video ok? A wedding video? Campfire song night? What do you like to see posted by friends and family?

My sharing on social media options are limited due to the policies of some of the popular sites. Facebook isn't an option as I will likely never have another account there. I don't agree with their terms, so I don't use them. I've never heard of Flickr but will look into it. I closed my photobucket when their policies changed. YouTube has the best terms I've found online so far, with various privacy settings available. My Wordpress blog also has pretty good terms, however, it's really pricey if wanting to upload videos. As you said, none of them are without risk when sharing. Things shared privately can be accessed by anyone with the proper skills and determination. Dropbox is an absolute No for me, again it's a terms thing. Haha, even email has it's pitfalls and security issues. Anyone who actually reads what's in all those TOS and privacy addendums, as I do, knows that posting anything, even just putting it on your own phone or home computer and never uploading to the internet at all, is to make it available to the world. Your home computer is legally completely open to every single app on it that puts the access in the small print. Nearly every app on your phone or home computer now comes with the right to access all your data, photos and videos even the ones you don't upload. After a recent update I noticed that even my calculator app had changed the rights to include access to my contacts. I shut that app down but you see what I mean. I'm not concerned about security because I've had enough experience with digital medium to know that there is none.
(0)
Report
I think that if the person would have done it themselves, then by all means do it.

You are obviously savvy about what information should not be included, so no one is being put at risk.

We traveled with our Pastor and his daughter, she took it upon herself to not only post our pictures, but used our full names with our location and how long our trip was to be. She just didn't understand what the problem was. WHAT!?!? We were adamant about removing every reference to us. To do this not knowing how we felt and to put us at risk was completely out of line.

We don't use social media postings like utube or 2face book, to much drama for us.

However, I am super glad that others do. Fun entertainment.

That is my personal opinion.
Helpful Answer (2)
Reply to Isthisrealyreal
Report
faeriefiles Mar 24, 2019
Yes, that was totally out of line. Most people never think about the possible ramifications of posting personal information. I had to learn the lessons the hard way but that helps me stay involved with online social media but do it in a safer way. "If the person would have done it themselves" is a great way to think of it. Before his injury he loved being included in newsletters and social media postings even when the laugh was on him so to speak.
(1)
Report
See 1 more reply
Social media can be a nasty place. Whatever you put out there will be seen by many people who aren’t family and don’t understand about Pop’s personality and impairments.

If you're going to make your videos available to the plublic, you’ll have to be prepared for trolls and people who are just Pure D mean and have no social filters. These people will post nasty and derogatory comments just for the reaction they will get from others. They thrive on negativity.

If Pops enjoys seeing himself performing, go ahead and post those videos. Just be prepared.
Helpful Answer (2)
Reply to Ahmijoy
Report
faeriefiles Mar 24, 2019
Thanks for answering. You're right social media can be easily hijacked by mean spirited folks. Trolls are pretty easily dealt on social media using the tools provided by the platform you're on, especially when posting to a specific audience. However it is very good advice to be prepared to use those tools. It's also good to be aware that images posted can be illegally copied, stolen and used by others in ways we don't intend them to be used.
(2)
Report

Ask a Question

Subscribe to
Our Newsletter