I was reading thru this forum and saw the post from rejectedwife (I think that was her name, darn sleep deprivation really kills my short term memory!).
I thought maybe it would be helpful to have a forum for the people in our lives that live with our issues every day, so they would know they are not alone. I am not saying this to kick them off the main forum, but only to give them (esp guests) a place to go directly to to find help and support for putting up with us.
Rejectedwife hasn't posted back to her replies...maybe if she had come here and found the support she needed immediately, she would feel better...
This group is wonderful with support for those of us learning to cope and adjust, but sometimes there are a lot of vents and rants. That can't be the best thing for someone like rejectedwife to see when she is so obviously suffering too...

Does anyone else think this is a good idea? What about all of you significant others lurking out there...would you use that kind of forum? Do you think you would find it helpful?

Does anyone else think this is a good idea? What about all of you significant others lurking out there...would you use that kind of forum? Do you think you would find it helpful?
Yes and No. I am here because my husband has sleep apnea but mostly because my daughter(age eight) was just diagnosed and I am trying to learn all I can to help her.   It might be interesting ,but if the forum was a seprate area I think there might not be a lot of use by people who actually use CPAP. I find that I really value the input of all the CPAP users. Sort of "getting it straight from the horses mouth" so to speak.


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Heather-Mom to Hannah(8-hose head) and Logan(4), wife to Paul (also a hose head)

I think a separate forum thread for significant others who cope with loved ones with sleep apnea is a great idea!
my 2 cents  

I agree and PM'd one of the moderators about this over the weekend but I wanted to add more visible support to the idea as well.

Hannah's-mom, I see the separate forum as more of a "support group" for people who have issues related to their spouse's apnea--spouse not using the machine, having problem's getting used to the spouse's machine/mask, not sure how to be supportive of the diagnosis/treatment, etc. Everyday questions that you ask on behalf of your husband (like "Is there a better mask to use if one has facial hair?") would still go in whatever forum they would now, the new forum would be more like "How can I support my husband?" or "What can I do to drown out the noise of the machine?" [the machine sounds very different to the person who's attached to it than the spouse]. And probably some CPAP users would still read that forum as well, but it would be a separate place just for those specific issues.


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Machine: Puritan-Bennett GoodKnight 420E (Auto)
Mask: OptiLife/Hybrid

Gotcha, cool. I will definitly check it out if it goes through.Thanks!


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Heather-Mom to Hannah(8-hose head) and Logan(4), wife to Paul (also a hose head)

A separate forum for this has not yet been decided.
However, there is a posted topic in the Late Night with Sleep Apnea forum, posted as a sticky to be kept at the top of the list for easy access, on spousal support. Feel free to use that for comments, support, etc.  The following is a link to that.  But if you use it often, you might want to access it directly in the Late Night forum.  Thanks.

Click here for link to topic



Linda


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Click here for link to FAQ and topics
Click here for link to section on machines and masks

Tilly, that is exactly what I was envisioning, more of a support thing than for info.

Linda, I haven't checked out the late night forum yet, simply because the description says off-topic discussions and I am usually just popping on and off the computer, not a lot of time to explore. I wouldn't think an off-topic area would be someplace our sig other would go to find support...I know I sure didn't.
Please do keep this idea in the discussions for a new forum!

I could be rejected wife, but I am an unhappy spouse "Wife of CPAP User".  I have seen a considerable amount of talk about this subject and it would help everyone.  In a discussion I participated in the moderator (Linda) posted and STRONGLY URGED us to discontinue the line of discussion to be sensitive to the CPAP suffer.  The spouse of a CPAP user is also a sufferer.  A separate site would allow us to have a separate discussion forum free from hurting or unknowingly saying something that hurts the person in therapy.

There is no doubt about it - treatment is very hard and the medical help and support is virtually non-existent.

Good luck to all of you!


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Husband uses CPAP ResMed Elite S8
With Respironics OptiLife Nasal Pillow
Started: March 23, 2007

I can kind of understand the moderators point, this is a support network for the people with SA...but on the other hand, my biggest support comes from my sig other, and there doesn't seem to be a place for him to find the empathy he needs. I have no real idea of what he is going thru, I have to keep reminding myself it's an adjustment for him too. How can I hold his hand thru this, when I am so focused on my own health right now?
Kind of like how AA has Al-anon for the co-dependant, there needs to be something for them. Helping him to cope will help me.

I have far from the final word, but here is my reason as to why I do not want to have a dedicated spousal support forum.

There are two kinds of spousal support.  The majority which we see is from spouses and significant others of apnea patients asking as to how they can get their partners to seek treatment, how they can help their partners overcome difficulties with apnea therapy or requesting information so they can better understand their partner’s disorder.  We see their posts in the forums frequently.  The second kind of spousal support is the kind seen in this thread, where the significant others of apnea patients feel greatly impacted by the patient’s therapy.

This forum is dedicated to apnea patients.  I do not want to dissuade anyone from using CPAP therapy and a spousal support forum in which posters talk about how it is ruining their marriage or relationship has the potential to do exactly that.  We recently have had apnea patients PMing us with specifically that concern.  Additionally, the majority of apnea patients already feel like failures.  They have been told they are lazy, bad providers, etc.  I do not want to support a spousal support forum in which apnea patients may be made to feel that they have to be “put up withâ€�.  Apnea patients are going to be reading and absorbing from a spousal support forum just like any other forum.  We can’t keep patients out.

We make suggestions such as ear plugs, finding others ways to snuggle and making adjustments.  We talk frequently about how to work around intimacy issues.  One very frequent poster in these types of threads had an extremely traumatic experience with a family member on a respirator so her husband’s CPAP understandably brings back a lot of that terror.  The only suggestion I had was to see a professional to help her get over that traumatic event.  Many times, our suggestions to non-patient spouses are discounted.

We certainly want everyone to rant, vent, ask for advice about any subject related to apnea, including this thread.  I can offer suggestions, I understand there is an impact, but I can not commiserate and can not support that kind of forum.

Vicki


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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

I have been reading what all of you have been saying and it is horrible.I feel like we are 2 year olds fighting over a toy.
This forum is open to evrybody and we need to share. You do not have to agree just do not rip us apart.
 How dare people who have SA tell spouses we have no right and should not vent and share. There is nothing when one joins that says you must be the one with SA.
 Aren'e we souppose to be here to help each other not insult and tell people they are not important.
Just because you have SA does not mean the world revloves around you. You are self centered and think it only effects you , that is why us spouses feelthe way we do. If it was not form anyof us our spouses/partners would not seek treatment or comply with the treatment.
 We are a significent part of the Treatment. We share the bed with you and have to comprimise and sacrafice  so that you can be healthy and love a long life.
Nobody is saying that A CPAP is not important some people have a hard time adjusting  and have other reasons why it is hard tosleep next to aperson who wears a mask.  
 I am personally sorry that how we feel bothters others and offends  you  but maybe if you knew how we felt you would be more aware
 I would never put a person down and judge them  because i disagree.
I come here to try to learn and help others not to see people taking this personally and insulting others.
 We all want world peace but can not even share a forum and be civil
 I hope evrybody realizes there is always 2 sides to a story and they are both important.

Whenever a spouse has an ongoing health issue, both need to find support to deal with it, I agree.  For example, I can't imagine being the spouse of someone with Alzhimer's or cancer, trying to care for that ill spouse.  I can't imagine how a spouse in that type of situation handles it or how is turns his/her world upside down.  But when it comes to xPAP things like noise or not being able to snuggle like we used to, I feel those are very insignificant issues compared to the OSA patient trying to make this miserable treatment work. A lot of OSA patients need very little as an excuse to just say "forget it," and quit trying.

I'm fairly new to this OSA world (two months into treatment) and I'll tell ya, you have no idea what's involved with this until you have to deal with it.  Before I was diagnosed, I thought that I'd get the machine, strap on the mask, maybe have a few nights of adjustment, and then I'd start waking up a new person.  Ha!  Boy, was I naive.  

My husband and I have slept in different rooms for 15 years because of HIS snoring, so loud that earplugs and sound conditioners do no good (you can hear him in the next room and downstairs).   He refuses to seek treatment.   He also had nothing to do with my seeking treatment.  In fact, he thought it was ridiculous when I decided to have a sleep study four months ago.  When he asks how things are going with it and I talk about how difficult the mask issue is, his last comment was if treatment is that difficult to get right, maybe it's not worth the hassle and I should just forget it.   I obviously don't talk with him anymore about my treatment.  I don't need that kind of "support."

Should significant others (SO) have a separate section to VENT?  Maybe.  It would be better than having that within the other areas because it's easier to avoid reading for those that would rather not. Should that be part of Apnea Support's forum?  I really don't know.   Those looking to SUPPORT the person with SA, that could probably go either way.  I do know of one board that has a separate section for that, but most don't.  

I'm not putting anybody down, just stating how I feel as an OSA patient since this is an Apnea SUPPORT Forum.

Pam


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Machine: Respironics Series M CPAP with C-Flex and heated humidifier
Mask: Hybrid
Pressure: 8.5
Other: Aussie Heated Hose
Pre-CPAP RDI: 19
CPAP AHI Average: 1

Well.. I am glad to see that in the past year we have not come very far in being accepted here.

When I first came here a little over a year ago, I was put down, called names, etc because I was seeking help in dealing with my hubby's SA.
Unfortunately, it still goes on to this day.

I am sorry that wanting to understand SA and to get help with is a crime. I am sorry that not all of us accept the changes SA brings to our lives like it is a piece of cake!

I am sorry that some people feel that nothing changes for their spouse/SO just because they now have to wear a mask of some kind. That things can go on just like normal for them Yeah right , and I am 16 and skinny too........NOT!!

I had hoped that some day we could come together and support each other.  I don't care if we have a seperate forum for spouses or if it stays on the main board. The thing is that spouses/so need a place to vent, rant, complain, ask questions,etc without being judged by users who don't understand or care to understand our point of view.

I guess somethings will never change. Spouses/partners/SO of cpap users will remain without support anywhere. If that happens, then I don't want to hear how a user's spouse/so.etc is NOT supporting them. It is hard to support someone when you aren't getting any support yourself. Just liek users claim that only other users can understand what they are going thur, it is the same with us spouses.

wow, I really did not mean to open a can of worms. There seems to be some anger out there, understandably. But let's work on a solution, rather than just venting, ok?
I searched MSN groups and found only 1 dedicated to apnea, and it didn't seem to have a good area for SO support. I'll look at Yahoo groups later. I'm pretty sure we can't post links here, but if someone does find a forum, perhaps you could give out some directions for others to get there.
In the meantime, please don't use this as a reason for attack. Those of us using CPAP's do understand tht it is hard on our SO, and we do want to work together on the issue. Most of us feel pretty helpless, especially the newer we are (I'm not quite a month in myself). I know my SO feels frustrated because he can't help, can't fix it and doesn't know how to make things better for me...and I just pray every night that I am not disturbing his rest.
Pleas folks, let's just take a deep breath. We all see the SO needs their own space too, and I don't think anyone here feels that they can't or shouldn't be on this site. But maybe Vicki is right too, and the person with OSA would feel even more defeated reading about the frustrations their SO may be going thru, so maybe this isn't the best place for that.
I'm sure if we work together we can figure something out. Perhaps a "sister site" for spouses? Keep it separate but available? Or maybe just putting a link to a spousal group on the links page?

Vicki, I do see your point, and I agree. My point is that, unless you outright ban spouses' coming here to vent (of which I can also see the merits), it is better to have a separate forum for that than to have it appearing on the main board. Frankly, I feel like many of these comments have been outright hostile to me as the patient, implying that I am ruining my husband's life and couldn't care less. I love my husband more than anything in the world, he loves me, and we have very much been in this together and have worked together to adapt. (And yes, things in our house have more or less gone on as before!)

An analogy might be this: I also post on a marriage-based immigration forum (my husband is from the UK). There are separate boards for people who are at different parts in the process. There was a board dedicated to, roughly, people who had the green card but were pre-citizenship. Like with any marriage, marriages involving immigrants sometimes end in divorce, and so on that board, we got a lot of very bitter, angry people (US citizens and immigrants both) who felt they had been used--Americans who felt the spouse had used them for the green card, immigrants who claimed their spouse was threatening to deport them if they didn't do whatever the American said, etc. It became very, very uncomfortable for those of us who were mainly happy in our marriage and just looking for advice on the next step in the process. The Americans felt like immigrants were implying that Americans were abusive, the immigrants felt like the Americans were implying that all immigrants were using their spouses to get a green card, and so on. The solution on that board was to create a separate forum for changes in marital status and their effect on immigration status.


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Machine: Puritan-Bennett GoodKnight 420E (Auto)
Mask: OptiLife/Hybrid