FORUM FOR Partners/Spouses and or Caregivers?

[Sah]

Interesting thought fielded by my spouse. She likes the site and the people. She believes that spouses/partners/caregivers could use the support. I asked what about their anonimity, "it's anonymous already is'nt?"

Just thought I'd put it out there to see where it goes? Thoughts and or comments anyone?

Thought's and prayer's to ya all!

Stephen

[willy]

She's right you know.  The heppers have support but what about the POOR SPOUSES/ PARTNERS?  That of course, is how Al-Anon came about; the loved ones of alcoholics were profoundly affected as the alcoholic and sometimes behaved outrageously themselves. ( And who wouldn't ?)  Living with us can't be a joyride.  I'm sure our loved one could use some support.    
        She of course, could just sign on and post, or if she wanted a bit more distance she could post at another board.

Willy

[Patti]

Stephen I think your wife has a wonderful idea. I would like to hear from the "other side" because of the huge possiblity of learning what they are feeling and going through. It would help me to take a close look at myself and realize that I am not the angel I think I am and that I do the things that they are posting. My hubby works overseas for 6 wks on/6 off, so he doesn't have to put up with me full time like my kids do. Heaven forbid if the kids told me I was GRUMPY, or say "whats your problem" they know better!! The family members do need support like we have and I would love to hear from them.

[Dude]

Capitol idea, Smithers! What ho! I think you've got something there, old bean!

It truly would be a wonderful opportunity for both sides of the coin... for the family members who just can't comprehend all we suffer with, and for us, as well. Communication is the answer, and if they won't listen to reason from the Hep C sufferer, perhaps they'd be more likely to understand if they took the time to involve themselves directly, asking questions at the source, the boatload of folks who suffer. I know I often stumble for a way to explain things, and then I read something from another member and BAM! It's out there, plain and simple to understand.

Some days I cannot put things into a cohesive description, and I look for ways but just can't connect. Other days I just roll out the words and they make a lot of sense. It would definitely benefit everyone to offer this forum right in our own message board. We already had some family members coming in to support their spouse or parent or sibling, but this would be a specific forum welcoming them directly. Excellent suggestion brother. Give wifey a warm pat on the back for a grand idea.

[Penney]

I also think it's a great idea!

[little_juan]

I agree. Great idea. Thanks for bringing it to the board Stephen.
I emailed the administrator, and asked permission to add a forum for partners/spouses/caregivers...
I was asked not to make any major changes to the site until I discussed it with him.
But... When and if he gives me the green light, I'll go ahead and add that section to the bb board.

Laura

[road_dawg]

Stephen, Hey man how's it going? Great idea, my girlfriend is my biggest support! If it wasn't for her I would have never found this site. I am yet to start the tx VA has put my tx off until may 24. My worries are up and I know my family and girlfried need a place they can get ideas and info about how to handle what we go throu, plus give them a place to get them support too. I also liked your other post in words of NA, Let Go and Let God!

[sands3]

Who is thinking , Wow, why didn't I think of that? The creativity and diversity of our family here is immense. Always thought there should be a forum labeled "SIDES", where we can get down to the nitty gritty of what we go through and share our (heard this before?) experience, strength, and hope.
This is a great topic, each day when my wife is getting ready for her AA meeting I get on here and commune with you all. She will always ask me if I am talking with MY support group then go off to the meeting. She even attended an AL-Anon meeting recently to help her help her daughter (ironically their advice was to quit enabling her) by not helping her anymore. Anyway, when I first started tx. last august she was interested enough to take a look see here a few times, it did not last long, but her awareness and attitude during that brief period was a blessing. This would kick start her by having Significant Others to relate to and we could all learn from each others point of view. Writing has always been an easier way to express deeper thoughts, you get to know yourself and others better.
Laura, thanks for checking with Glen about this no matter what happens.
And Smithers, hats off to your better half, guess someone has to do the thinking around the house.
The best we can do is not be a killjoy, like willy said, this can't be a joyride for them.
I tried the idea of cracking a smile, thinking good thoughts, praying for the will to forgive myself and others when I get ticked off, even wrote letters and burned them cerimoniously in the yard. Whatever it takes, started to get depression a few days ago, could feel it taking over, MAN did I do an about face as fast as possible, ironically the solution was to stay on the AD's and sacrifice intimacy. The idea of depression was enough to scare me into changing my whole attitude.
Shawn

[inforthelonghaul]

good evening to you all. I just want to say that I look forward to reading all the different posts in this site from time to time. I thank you as well for being there for my spouse in particular. I am an HCV's wife and I know that this is a life line for him. I can put his name on almost all of your posts because he can truly relate to everything you all have to say. Every one of you deserve a purple heart for bravery!!    I can only sit on the sidelines and watch while he is driven mad one minute and sad the next and it goes on and on as you all know. As a spouse, I am in it with my husband to the end. Whether he likes me or not!  Also as a spouse to this madhatter's tmnt, I take things very personally at times and I know there are other spouses like myself who wish to help but feel helpless most of the time. I know that this treatment wreaks havoc on your whole body and it is hard to watch a very strong man become someone so completely different. I am thankful for your responses to my spouse's post regarding having a forum for spouses and caregivers. I look foreward to becoming a part of that forum when/if it gets started. I pray for each and everyone of you and also say that we care and we are there till the end. Stay strong and fight the good fight, It's so worth it.

inforthelonghaul

[Dude]

All I can say is WOW! Inforthelonghaul, you're a dream. He's a very lucky man to have you there. Have him post here now and then, we'll all welcome him as we do you.

God bless.

[willy]

Hi dear:  If I can be so casual......  I'm happy to see you write, and I'm certain others will enjoy communication too.  On the surface, we are just a bunch of people that are sick and scared and are happy, very happy, to meet others like ourselves.  And we amuse ourselves.  We are diverted from our problems, we can put them down for a few minutes and relax with friends.  As you go deeper we are trying to help each other too.  This forum provides a lot of good information,  it provides some attitude, some spiritual help, some hugs, advice, even criticism, and forgiveness too.  It's a multi vitamin for those with HEP.
         I'm glad you are posting and am sure that you have much that you can bring to the board too.  I ALSO like the idea of your name.

best,
willy

[Rob]

Hi Inforthelonghaul,
What a wonderful idea and way to support your spouse.
His journey is not easy but having someone special, like you has made it easier for him; I'm certain. You are a gem and a "keeper."
I know you'll find support and understanding coming here, too. (Spouses, partners, family, etc. may even need it more than we do.
Robin

[countrygirl]

Thanks Stephen for posting on this idea and IFTLH (I think?) for the inspiration behind it. I'm trying to post a pix in my profile (hopefully Laz will help me out there) and purposely chose one to include my hubby of 24 years, cuz, yeah, it's not always about just me, we're in this together. He pointed that out to me (and quite vocally I might add) soon after my dx. He had been down in the Twin Cities for the better part of that month helping his parents during their health crises. I was alone on the homefront struggling with all those fears we have soon after dx but never mentioned them to him when he called cuz I thought he had enuf on his platter at the time. When he got home, I admitted that some days were rough and I remembering him nodding his head in agreement at first, then he said, "No, wait a minute, that's a bunch of s&%t!! How dare you deny me the chance to return the favor for all your support during my folks' problems!!! This isn't just about you or just about me, it's about us so don't shut me out." And he's right, it IS about us, what affects one, affects the other. Sometimes we cry together, sometimes we laugh together,sometimes we just hold on for dear life until the storm passes.... and that is sooo good. Kinda like we do here. Pam

[sands3]

It's working already. welcome iftlh, your words are inspirational and it;s time to get spousey in here to read this.
Shawn

[Joni]

what a great idea for our significant others, etc!  i know i have not been an angel the past 2 months at all.  my partner has a scarred lip from biting it all the time.  i just pop off with all kinds of stoooopid stuff that i never before (well not never, but much less) wouod say.  my inner ability to censor my mouth has been lost.

i actually had a talk with my students before i went to DC about my how i had been on edge and very irritable.  one of the kids said behind my back but loud enough for me to hear (leave it to a teen to tell the truth) that i was "easily angered" these days.  way too close to the truth, but right on.

so i discussed without great detail of my illness that i was on serious medication, i was alright, things would be fine, etc., but that the sides effects were getting in the way of me doing my job as well as i used to.  i explained some of the sides and i asked them for some patience and understanding, and damn if they are being much more patient with me.  i forget by letting people know, it gives them the understanding to give, at least me, some space.

so after that rambling, i believe a site for our partners is a great idea, and thanks to those making it happen.

joni