Topic: What about a "Caregivers' Retreat" section?

As I said in a previous post, I think we need a section that's just for our amazing caregivers, where they can feel free to vent and yell about anything they want. I know they must go through a lot of emotions that they think they "can't" share with anybody, and it would be so good to have a space that's just for them. They would be sure that anyone who goes there will understand exactly what they're going through, and will support them all the way.

And people who might be upset by the posts there could just avoid it, the way I never look into the Grieving and Hospice Care sections because I know they contain things that are very upsetting to me.

I don't know, what do you think?

Kristin

Peace, hope, and healing to all!

Re: What about a "Caregivers' Retreat" section?

Hi Kristin, I want to apologize ahead of time for anything I may say as people know I just say it. I would think there are more Caregivers on our sight than patients as some patients do not want to deal with talking CC. Caregiver's are so very important as they are also the advocates for those who are intimidated or are too upset to advocate. Most of the Caregivers relay the answers to questions asked by other patients/caregivers. I see no way to separate the 2. As a Caregiver and a  Moderator I would feel just horrible if I missed something that I could have answered because of switching back and forth.  I would also feel horrible if I asked a question and missed the answer.
Honestly I have been on another CC site and a site for my GIST tumor that I just had removed. Both those sites used the same language in descriptions. People come on here, when first DX and they are very angry, sad and scared and some of the descriptive words make them feel better. We do tell them to rant and rave and ask or vent. I have never seen swear words so that just shows how classy a family we have. The descriptive words are not meant to upset others but I really feel they are fine if the poster needs to vent. I have also seen maybe 2 people offended in the last 8 months. I sincerely hope you are able to overcome the words, they are just words, like CC is a word and stay with us as we do value your input.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What about a "Caregivers' Retreat" section?

Lainy I  agree with you wholeheartedly.I understand where Kristin is coming from but it would make the site not real.I think it is a silly idea.My husband never looked anything up,he preferred not to so that was my role always.There is plenty of positive on the site and there are some tragic situations unfolding concurrently,that has always been the way on this site            Janet

Re: 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

Peace, hope, and healing to all!

Re: What about a "Caregivers' Retreat" section?

Oh, I was not upset only trying to explain why I felt we should leave things as they are. Every one is entitled to an opinion and that is why we are here. I just don't feel we need another place to vent. As for your family/friends, perhaps you need to bring them in to the situation and let them know that you could use their help. Maybe they are waiting to be asked. We welcome all suggestions and I have made some doozies but I also find its ok if they are not accepted, all we an do is try and suggest. Never know when one will hit a home run!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What about a "Caregivers' Retreat" section?

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

Re: What about a "Caregivers' Retreat" section?

I think it's a pretty neat idea, Kristin.  There is a Caregiver section, but the threads in there primarily focus on the end-of-life issues (remembrance and palliative care).  There is a thread for emotional issues, but that may not capture what you are looking for.

We're always open to reworking the message boards.  I don't think any of the staff is particularly fond of the current "Order," and welcome suggestions.  If you guys have a few minutes, we would love to hear your ideas on reworking the organization so that it makes sense to everyone, and doesn't present too many different subfolders that information gets lost.   

I hope you guys are having a great holiday season.

30-something caregiver

Re: What about a "Caregivers' Retreat" section?

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

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: What about a "Caregivers' Retreat" section?

Great points, Kris!  You always have such a great perspective. 

I am intrigued how to rework things so that it is clear that a particular section is limited to postings on a particular subject.  What appears to happen on the boards is that people post updates in every subfolder.  For example, the Members' Cafe was set up to have a reprieve from CC-related discussions, but you will still find members posting updates about their loved one.  I personally don't mind seeing those posts, but it defeats the purpose of designating specific topics for a given subfolder.  I suppose that we could start moving posts, but I'm always hesitant to do that because I am nervous that it will confuse the original poster.   

Again, we welcome all ideas on how to improve this place!  We want to hear from those of you who use it most!

30-something caregiver

Re: What about a "Caregivers' Retreat" section?

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

Peace, hope, and healing to all!

Re: What about a "Caregivers' Retreat" section?

Huge hugs right back at you, Kristin.  Your posting was welcome and well received.  Rick had moved threads around some time ago and it truly was an ordeal due to the time involved.  Ideas such as yours will only make this board better so please, keep it coming.  With so many bright heads on this board an answer will be found. 
Wishing for the best New Year ever.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: What about a "Caregivers' Retreat" section?

Hi Kristen, good to see you!!  Did you see Marion's posts where she pre -labeled it "Sensitive"? I thought that was a great idea.
I know you are scared and burned out which is why I suggested you ask your family and friends for help. You could call a meeting, like an intervention only the intervention is on them.  You could hand out our CC brochures and explain that you need their support mentally and physically. That this is about YOU not them.
Our system is honestly pretty good, I have seen others that I could not understand at all. Even though we have all these folders (I know I am also at fault), we jsut post in places that sound "good". What really confuses me is when someone pulls up a post from 2008 and starts it over again. I have not posted this in a long time but here is a Cancer Patients Bill of Rights that you could also hand out.

If I should express anger or depression,
PLEASE DON

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What about a "Caregivers' Retreat" section?

Hi Lainy,

Thanks so much for replying. In the posts that I wrote, I wasn't thinking or talking about myself (I'm actually doing very well, have had a stupendous November and December, and don't have to go back to the doctor until February.) I was thinking more about other people who are going through especially hard times, and need a place to vent even things that might sound harsh or "not OK."

We really  need a place to keep valuable things like your Bill of Rights so that they're always easy for everyone to find. Kris suggested "stickies" a while back-- I wonder if that's possible?

Wishing you a very happy New Year!

Kristin

Peace, hope, and healing to all!

Re: What about a "Caregivers' Retreat" section?

Happy New Year to you as well. When it comes to computer knowledge I am in the Dark Ages. I will leave all that up to computer experts. To me, the easier something is, the better I like it! Have a good one.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What about a "Caregivers' Retreat" section?

lainy, i *love* the cancer patients' bill of rights.  especially the bus dragging you around for five years.  great metaphor.  i get really tired of people telling me they understand how howard feels, because they too are "sooooo stressed out."  i am printing your post as a reminder.  thank you.

it takes what it takes

Re: What about a "Caregivers' Retreat" section?

Aneux, my very best friend  is a good person. She cries about Teddy and when I found out I have cancer in October, she cried. We talk daily but if I say anything about Me or T she has something worse. I usually drown it out after a while but now T & I kind of laugh about it. We are a very special Family here because of what we face and we face it with attitude, fight and honor. I think what got me addicted to this Family is, here are some people facing a terrible prognosis, but they are right with everyone trying to help others. Is there anything in the world more unselfish? I always think I am being selfish though as when I am on site I feel good, confidant and calm. So for me its really kind of selfish and I thank you all for making me feel so good!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What about a "Caregivers' Retreat" section?

Hi Lainy,

As far as someone making others feel good goes, YOU certainly make everyone here feel very good indeed!!!

My very best wishes to you and Teddy for 2010.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: What about a "Caregivers' Retreat" section?

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.

Re: What about a "Caregivers' Retreat" section?

Nicely said, Sharon. I still like the way Marion posted several subjects by using a one word warning:

SENSITIVE:      Yadda Yadda Yadda......(Marion did not say yadda)

Then Rick would not have to change anything. We would just add the word. Of course then it becomes a problem deciding if something is sensitive as what is sensitive to one may not be sensitive to another. Sorry...I am talking out loud to myself here. Perhaps someone can add to or refine what I am trying to say.
Guess its time to go to sleep. Goodnight Family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What about a "Caregivers' Retreat" section?

In my experience on this site I have seen patients venting their feelings probably more than caregivers not counting the grief section and the responses from ex caregivers are always helpful and apropriate.It seems to me that when people are going through a bad patch their language reflects this,sometimes sad,sometimes angry but I dont think the caregivers are that extreme with their language.I think a caregivers retreat is a good idea as a supportive section but I noticed a new member refer to this"horrible illness" recently so I think that element is always going to be there.After all its not a great illness to be diagnosed with however we speak of it                    Janet