Caring Bridge Chaos

[Danie]

The online support website, Caring Bridge, is a great way to help people in a health crisis. I need some feedback on how it went crazy in my family  and how I admittedly contributed to the crazy part.
My aunt has been severely ill  for 5 months. She never fully recovered from a surgery that was meant to help her walk better; she had a spinal tumor. She is beloved by 5 nieces and nephews, but is geographically far away from us. Her main caregiver, her wonderful husband, was overwhelmed and wants privacy so he requested that people don't call as much. Starting the Caring Bridge site was a great idea.

One of the 5 nieces that considers herself particularly close to our aunt started policing the Caring Bridge site. A separate text thread was then started and she began ordering people what they could and could not do regarding posts and invites.

I tried to converse with her about her warnings - very nicely at first. The main issue was the caregivers need for privacy. The privacy concern was "sensitive medical issues". I totally understood. I tried to explain that our aunt has a lot of relatives from her childhood that love her dearly and that I wanted to inform 1 or 2 of them. I told her that Caring Bridge has an "invite" system and that she, or whomever was the moderator, could decline it.

She then attacked me and said "it's not about you" and continued to criticize me and explain how my aunt and uncle are struggling, as if I didn't understand. I wanted to keep the peace, but I said "I don't need you to tell me what to do".

I asked to be removed from the e-mail thread and waited a few days and and notified my aunt's first cousin, who wanted to post and follow on Caring Bridge, and explained she could be denied. She was really concerned and wrote a lovely comment and submitted it and was denied. Next, another nieces spouse added me back to the text thread and proceeded to chew me out about the first cousin trying to submit a post! As I stated, this person is a spouse of a niece, not really a relative. He actually didn't even get her name right!

I asked him (on the text) why he was doing this and his explanation was that he was trained in hospice  and the wishes of the patient and caregiver come first. Well duh!  He continued to talk down to me. I asked why he thought it was okay, as an outsider, to chime in and he proceeded to personally tear me apart. He called me several names and attacked me  like I've never been attacked.

I just said "stop this" and "I don't think the caregiver really ever wanted the Caring Bridge site in the first place". I suggested he just close it and then I told him I wasn't participating in either the text thread or the Caring Bridge anymore. He told me to "grow up". 

After a few days I apologized without any excuses, I asked if he would accept my apology and he commented about "staying away from his children", trying to imply that I'm an evil child predator. The text thread had a lot of participants, and I think his grown kids were there, I don't even know who. I had asked them previously to remove me so I was surprised to be getting his condemnation.

I know everyone is super upset and I am just going to grieve alone or with my immediate person. But I guess this is a warning to folks about CB and I would love comments.

[moglow]

I totally understand wanting to respect their privacy while communicating with concerned loved ones, that's what CB is for after all. Having one micromanage in this way would be dismaying. What are you expected to do when someone asks about your aunt, blow it off and lie, tell them she's fine?? Isn't the whole idea of the group to relay information? People aren't even to be allowed to ask on a group for that purpose - then why have it there at all?

I'd be hesitant to interact with the group if this is how they approach simple questions and well meant messages. Kind of, take what I need and leave the rest if you will. And the one cousin in law? I'd block him entirely. Nobody needs that folderol.

[Danie]

Thanks Moglow. My aunt has since passed. It's very sad and painful.
I learned a valuable lesson here, when someone dies in a dysfunctional family it goes haywire. And yes, my thoughts exactly - a Caring Bridge sight is for sharing information as well as giving support. It's not the time to be criticizing hurting family members, at all! Brother in law called me several names: paranoid, self-absorbed, immature.This was because I called him out on trying to control people's input.

I tried to make peace with him. I apologized!! Nothing back.... The other controller, in the family hasn't reached out. My aunt had a lot to do with my upbringing, I was very emotionally attached to her and now my sister's and I are being left out. I guess it doesn't matter so much. Maybe we were really disliked? There I go, being paranoid again.

[moglow]

Try and not go there - I know that's easier said than done but second guessing like that just burns you down and serves no good purpose. Some of the most awful times I remember within mother's family are around passings and funeral gatherings. They all lashed out at anyone nearby and behind their backs later. Our whole extended family imploded as a result, where no one wanted to get together anymore. Just so few happy memories and so many soured by the elders' performances, insisting we were to all pick sides for some reason.

You can't make peace with an angry person. That's his stuff and honestly kind of good to know - you've got nothing to regret there. Don't take on his or others' spite. Truly, life's too short.

I'm sorry for your loss. Mourn in your own way and whatever works best for you. You don't need their permission.

[Danie]

Thank you, thank you, thank you. My head isn't spinning anymore   

I had this illusion that it would be a "warm and fuzzy" coming together.   

Sometimes I think technology (not really new anymore) complicates things. People say and do what they want. And you can't read any body language.

There are a couple of young males in the family that I'm sure are impacted. They are also innocent and I hope to give them hugs and some words about moving forward.

I must admit...I contributed to the negativity and dysfunction. I'm trying to clean that up. Not going to beat myself up. I do expect more crap! (Where's the poop emoji?)  I'll keep my boundaries, but in a more subtle or private way.

[Danie]

I have some follow-up concerns and questions about my aunt's passing.

She was very, very important to me and this has been very traumatic, however I'm just not feeling the love from her husband (uncle?) or my cousins - about attending her memorial service.

My cousin said she is creating a slide-show of our aunt and that my uncle might want "1" picture of me (and one each my sisters), but he may cut it at the last minute.

Nobody has really encouraged me to go to the memorial service. It's across the country and I figured about $2500.00 for 2 nights for my husband and I to go. No information is coming forward...just written details (the published ad) about where and when. I couldn't even get an answer as to whether or not the service (if there is one) will be live streamed.

I'm not expecting a personal invitation...but just a crumb of interest in my sisters and I attending. Am I wrong in hoping for some kind of information, like, what's going on, where are people staying, is there a gathering after? Nothing, and can't get questions answered.

I don't think I'm wanted which is a lot of pain on top of the grief. My husband wants to go on a vacation, and I've tried to explain how hurtful this is and how I need to protect my heart.

Don't know what to do. I'm going to err on the side of not going.

[moglow]

I'm not sure what to say other than I don't understand people. Times have changed, funerals included. They may be trying to figure it all out, what's best or a least feasible. Some may err on the side of caution, not wanting to pressure distant family members to feeling they should attend. Some plan low key local only services. Recent loss of a lifetime friend had services in her current city as well as hometown where we grew up and her parents still live. Hers was definitely the exception of what I've seen the past few years.

Old school gathering families together (as I grew up with) seems to happen less and less. Or they may be reeling and just not coping well with the loss and how best to move forward. Uncle may not be great shape either and they're trying to address his issues.

Me, I'd send lovely flowers or a plant and maybe a heartfelt card with my condolences. And I'd grieve the loss my own way, celebrate my memories of a dear aunt.

[Danie]

It's good to know that funerals and memorial services are different these days. I'm trying to give my uncle and cousin the benefit of the doubt. Maybe my cousin is misinterpreting the information that is getting passed to me, from him.

I'm used to people posting and sharing some kind of information about hotels, airports, gathering locations...anything. But it feels like stuff is being deliberately withheld. And then to quote, "nobody at the service will know them, they might want to see 1 picture". That sounds, to me, like we're not expected to be there.

They aren't saying "don't come" (well kind of they did). I suppose we could go and if they block the door at least it's a nice area and we could find something else to do.

Maybe, just maybe, my uncle is upset because my aunt called my mother on Christmas and she hung up on her. This was the last time they'll ever speak. It probably hurt her a lot, but my mother has hurt many people over and over. I am not close to her at all. Maybe this is being held against me! I'll never know.

[Danie]

Grieving hard today, but I know I'll be okay 
I did nothing wrong, and if I did I apologized. I'm human.

I figured out I had a fear of "not going" to the memorial. Seriously, I worried someone would use THAT against me. I envisioned hearing "you didn't even go to the memorial service". That's how my family is...you can't win sometimes.

I'm more about peace about the confusion of attending; the mixed messages in my head made me feel stuck. Now my focus is looking ahead at perhaps having a separate memorial for people that couldn't travel or were getting discouraging messages (like me) from a cousin. Also, my uncle. He went through some hell caring for his beloved wife for 5 months while she passed.

Not going to second guess, not going to be mad or annoyed (I can't control anyone) and put my uncle top of mind. Going to send beautiful flowers and write my uncle a card and send some love.

[moglow]

That sounds really nice, Danie - it's good to reach a place where we're able to be who we are, not as someone else [might] see us. Not accepting those views and our assumptions has been a big leap forward for me, hope it is for you too!