What about a "Caregivers' Retreat" section?

Hi Lainy, Hi Janet,

I'm so sorry if you felt I was criticizing you or complaining. My idea is not to "segregate" caregivers in one part of the site, but to add an extra place where they can feel totally free to say anything at all and know they will be understood.

For example I've had friends who were caring for elderly parents with dementia, and sometimes they would complain and complain to me, and I know they loved their parents dearly but they were totally stressed out. They needed to complain to someone who would listen and understand-- they couldn't say those things to other family members.

Anyway, with regard to cc, I'm a patient, but I'm the only one in my family who DOESN'T have my head firmly stuck in the sand-- no one else wants to hear anything "scary", so it's up to me to do all my own research, post on message boards, etc. It's tough, but that's the way it is.

Anyway, it was just a thought. I'm so sorry I upset you both.

Kristin

I dont think Lainy or I were upset ,just trying to be realistic about how the site works and realistically people should be able to visit whatever section they want and say whatever they want wherever                    Janet

Kristin,
Do we share more than a name? I too avoid certain sections despite the fact that I am a moderator. Mental and emotional health are too important and sometimes, knowing the facts, but not the details is liberating and makes LIFE and LIVING easier and happier.

I think a venting place would be good. I dont think people can understand the worry, guilt, and fear a patient can have. I personally dont need any more guilt about the future and although I completely understand why carers need to let off steam and unburden themselves, I feel that it would be nice to be able to avoid that if I wanted. Seeing the carers hurt and fear only adds to patients guilt and hurt.

As a group, the patients on this board are highly aware of what is happening.  Trying to avoid carers ventin isnt hiding from the truth, but just tryign to live life to the fullest.

Kris

Kris, thank you so much for your comments. I felt so badly that caregivers thought I was trying to censor them, when what I was really hoping for was a specific place where they could be even more free to say ANYTHING, from "I'm soooo fed up and burnt out" to "I'm soooo scared." I still hope we can do this somehow.

"Knowing the facts but not the details"-- you are a very wise woman! I will remember that idea. You are SO right about that.

Sara, I can see the moderators' problem with posts scattered all around in differrent folders. I think it's especially a problem when new-member intros get buried in the middle of a thread on something else. Maybe moderators could occasionally move posts and threads, while leaving a note for the original poster? (But that would be an awful lot of work...)

A huge thank you to all the moderators, for everything you do!

Kristin

I am intrigued by the idea of a caregivers venting section as I am by a section for patients. While we are all in the fight against CC, we do have different perspectives and needs.

I have found myself "self-sensoring" when I post because I am cognizant of everyone who my read my post - just as I have read so many posts (some of which broke my heart and gave me nightmares). However, those same posts that were so hard to read have given me an idea of what might be coming for mom and have helped my prepare myself, help her and have helped my family understand a small fraction of what she is facing. They have also helped me act as an advocate for her, and put forward ideas about her health that her physician might have missed or not seen quite as quickly.

When people come to site like this, it is to find answers that are elusive and hard to find somewhere else. It is for comfort, the ability to find a "family" that gets what you are going through. And it's a place to ask hard questions and hear hard truths. But most importantly, it's a place of acceptance; a place with no judgement and a feeling of not being alone in what is generally a dismal situation.

I think that Kristin and Kris nailed it when they said they avoid sections that are potentially upsetting. I know I've done the same as a caregiver. We all can also stop reading at anytime - we do have that choice.

So all this to say... I'm not sure anymore but I feel pretty good having a place to share my thoughts. A "caregivers corner" could work well - it would let people know from the outset if they want to read or participate and let others aovid it all together.

As a caregiver, the absolute last thing in the world I would want to do is to cause any guilt, pain or saddness for my mom or anyone who is battling CC.

Yet having a place to be honest and open is invaluable and might make me a better caregiver for everyone I love, including myself.