I think it is also difficult for single people to understand the complex of issues that a relationship faces surrounding SA and CPAP treatment, like any chronic disorder.

Personally I'm in favor of a spousal support forum, and asked about it in PMs to the site admin. I was basically told the same thing that the moderators have expressed here, the idea that people with SA might not seek treatment if they see how difficult it can be. However, I don't see why "Sleep Apnea Support Forum" only has to be about the person suffering from apnea, because the partners suffer in their own ways too related to SA (as has already been said). A good marriage is a true partnership, and whenever either spouse gets self-centered the relationship begins to deteriorate. The medical community doesn't even hardly recognize anything other than the physical need of the SA sufferer (very little to no emotional/psychological type support in adjusting to CPAP), and completely ignores the impact on the spouse. I think it is insane for a support site to take the ostrich approach, sticking its head in the sand and pretending like these issues don't deserve more considerable attention than being a sticky note in the "off topic" section of the site.


_________________
<--Will-->
http://www.inside-corner.com
http://www.willwillis.us

I also see that it is hard for spouses but I feel like Vicki feels.  It really needs to be kept away from cpap users for now.  It is hard enough for us to get used to this new life without getting complaints  from a partner.  I have asked 2 of my friends who are cpap users for years how their spouses cope and they both said it was hard for the first 6 months but now it's no big deal.  They have gotten used to it so maybe the spouses can just hang in there knowing there is an adjustment period and things will get back to semi normal within a few months.

I could be reading this wrong, and I apologize if I am, but it seems some people believe their need to vent as a SO of an SA patient needs to be there regardless of what that does to the SA patients.  They should be allowed to vent anywhere because they're suffering, too, and if the patient doesn't like it, they're selfish.  I understand the need to vent, I really do.  But do SO's realize what a major burden it is for the paient to not only have to deal with the illness, but to have the added burden of feeling guility on how negatively they're affecting the lives of others, and then having to read about how miserable other SO's are on a forum that we go to for support?

The patient and the SO both need support, but now I'm convinced that the venting support needs to be, if not in another section here, somewhere else altogheter.  I love the idea of a separate forum altogether with a link, as someone else here suggested.  Support for those who need to vent will not easily come from SA patients, but from others who also need to vent, just like support for SA patients comes mainly from other SA patients, not from people who don't have it.  It's hard as an SA patient to help support someone who is venting against their illness and treatment, because we already feel bad enough about how it's disrupting certain areas of our personal lives, not to mention dealing with treatment that's less than ideal and can be difficult, to say the least.  And that can easily cause the defensiveness or perhaps rudeness that some have mentioned.  Didn't say it was necessarily right, but it's understandable and common.  

Both need support in different ways--I think we'll all agree.  The problem seems to be where that support should be in order to effectively support one "side" without hurting the other.

Pam


_________________
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

I am sorry if I came across harsh earlier but others have also.

Cpap is a change for everyone...user,family, partner,etc.
That change whether it be good, bad, or indifferent is still a change no matter what.

If cpap is so easy and rosy like some here would have people believe, then why does this site even exist?
WHY? Because cpap is not always easy to adapt to by the user (nor the rest of the immediate famly.)

One thing I guess I don't understand is why cpap needs to be painted in such a rosy picture,
like nothing is going to change in anyone's life due to cpap. Some folks are lucky and adapt quickly with few if any problems.
Not everyone does that tho....thus part of the reason this form is here I would guess.
If cpap was so easy and cheery, then like another thread asks....is anyone is happy here?

Why can't the whole truth be told here?
Why can't the good as well as the not so good be shared?
Why do people get told that "nothing has to change"? Cpap itself is a change regardless what it does to a relationship.
Everyone handles changes differently. Some work things out and stay together in the same bedroom while others don't.
Does that make either solution bad? No because it works for them.
It does appear that for a very few, cpap has little effect or change on things. That appears to be the minority.
Most goes thru some kind of adjustment phase.....user or partner.

If users and partners can't talk at home or even here, how is either party ever going to learn to understand the other side?

I have learned a lot from this site about SA over the past year, things I have shared with my hubby who uses cpap.
I think some who are users have learned from us partners in this past year as well.
I thought that was the main reason for this forum...to help educate people about cpap,etc.

It seems like the support person for the cpap user  is not considered important in the treatment by a lot of folks.
If the user needs support, then so does the partner for whatever the reason. Just like the user gets frustrated by things, so does the support person.
Sometimes we can seperate the support from our own needs for support and sometimes we can't.
Just becasue we may be angry,etc at times doesn't mean we don't care and love the one who uses cpap.

When I first started, I saw only a few posts at this forum and another one I frequest where the patient had virtually no problems at all, kinda took to the treatment like a duck to water.  That can happen, but from what I've read, that's the exception rather than the rule.   Most posts are from patients who were miserable and/or fighting to get their treatment working.  And fortunately for those of us looking for answers, there are those patients who have made it through and have come out on the other side with successful treatment and have stayed around to help those of us still trying to get things to work right.     

The fact that is so difficult for most of us is exactly the reason why I, as least, don't need to read about how miserable I'm making others.  At least not at this phase of my treatment (two months in).  That's me.  I don't get support from my spouse or anyone else. (My 18-year old son is more supportive than my husband.)  A dear, dear friend of mine, who I know, bless her heart, was getting tired of hearing about my treatment problems, found out that a friend of her husband's has SA and now we're hooking up through e-mail.  That's been extremely helpful to me.   We both also suffer from insomnia issues in addition to SA.  Maybe I  should just listen to my spouse and just give up because I'm having so much trouble making it work.

ADDITIONAL:  Pennysfaith, the person you were talking about was "guest" and the topic name was "Rejected Wife."  From what I've read from some posts in this thread, I was expecting the responses to "Rejected Wife," to be mean and rude, but they all seemed to be very helpful.



Last edited by WearyOne on Wed Apr 25, 2007 12:00 pm; edited 3 times in total
_________________
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

I completely agree that everyone needs a voice and a place to be heard.  I am in several Yahoo Groups.  That would be a great place to have a forum for "The effect of Sleep Apnea on Relationships".  We have links to all of the other CPAP support forums and would be happy to link to that as well.  Until we decide what to do here, that is a good option.  To those of you interested in that topic, PM me as soon as you get it going and we will put the link in right away.  It shouldn't take long at all to set it up.  That way, we all get the kind of support we need.

Everyone should feel free to vent here as well.  I am simply saying that I do not want a forum dedicated to that here.  The majority of people asking for spousal support get the support they need in the current forums.

Vicki


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

all posts with all views are important..mine or my husbands. All views should be welcome here...I read posts that I think I'll care nothing about and get information I never expected to see.
the same goes for a SO section I would love to read posts from our So(s) here. I would most likely get insight and my husband would.. on thoughts he may be feeling but not aware of. Having the idea that you aren't going to get treatment because of what someone else feels is an issue that you bring with you and here is the place to lay all the cards on the table.. try to clear your head and do the adult thing and get your self better first for yourself... then your family. information is freedom..the honest insights of our SO are too.

One last thing from me.  Even if we are to have a separate forum for spousal support, those who find their apneic spouse's treatment a detriment to their relationship will still not feel supported because they will always receive the kinds of nonsupportive responses from apnea patients that they have received.

Vicki


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

First of all , I do wish to attack anybody or insult, that is not my style.
This is becoming out os hand. Us as spouses should be pushed off to the side as if we do not exist.Even though  we were not the ones diagnosed
we still live with an a daily bases.
In many ways i agree that we need a seperate and in some ways we shoud not. Yes i understand the people with SA  may  not care and want to hear how their spouse feels let alone others. and need to have a place where thye can vent. Just as we do. BUt since at home we need each other we need each other here as well.
Nobody can tell somebody they cn not come on the forum it is open to anybody who chooses.None of you get to decode who can and who can't.
I see thorugh my husband the adjustment and time he needed to aclimate to his new sleeping habits. BUT through this froum i read things and learned about things that were able to help him. which in turn helped us.
I personally never said that we (as in spouses/partners) had it harder, or that our feelings were more important . I would do anything for my husband and if i could take away OSA then I would.  
We need to learn from each other.
When I joined as a spouse almost 2 months ago, SOme people were very helpful and others were mean and told me I had no right to have feelings and it was not about me. I know It is not about me persay, but as a married person if affects me even if i do not want i to. I got off the computer crying. which in turn made things wourse at home.  
 We NEED to learn from each other and share experiences. You never know what you will say that will help.
 It is not our fault that people with SA get angry or do not seek treatment or not comply. It is their own fault.
 Some of you have been very supportive and helpful to me personally and others. and i thank you.
People who do not have spouses/partners have no right to say anything you have no idea what it is like.
I came here forn help and all i am doing is having to defend myself and others because we are not like you.
 You  all have your opinions nmade up already and again the SPOUSES have no say and no choice .

I am the spouse that has to use CPAP at my house. My husband and I talk about it.  I ask him questions, he asks me questions and fortunately for me he is an angel that does not appear to be bothered by my machine, the mask, the noise at all.  He doesn't even gripe about the COST.    I am thinking though that if he had trouble with something that he should vent to me personally since I am the person that would have to try to accommodate him.   If the person you live with either as the patient or the spouse has a lousy attitude or won't share with you in your relationship there is little we can do on the board to fix it.
What drove me to this board in the first place was that I was searching for support, someone to help me deal with sleep apnea, someone with experience in machines, masks and treatment.  Tips and tricks to make the unbearable bearable.  Most of what I read did not paint a rosy picture, most people were like me, scared, embarrassed and clueless.  Others HATED the treatment, but there were a few that gave me hope.  Those are the ones that I came back time and again to learn from.  I know I wouldn't have come back if the first few posts I read were telling me that I would be destroying my relationship or how unhappy my husband would be.
I think the reason some of us do better in treatment is luck, others do better by just having a great can do attitude and still others do well because they have great support at home.
I think if you have major complaints with your spouse those issues have to be treated at home and if you can't fix them there, how can we fix them here??
I think a link to another forum here would be great or even a thread that is strictly for the rejected wife or neglected hubby.  That way we could read them if we wish, and they would always have a thread where people who could relate well could give advice or just add their thoughts.
Remember these are just my personal feelings and not meant to reflect those of management.


_________________
DONNA - TEXAS

SOMETIMES YOU'RE THE WINDSHIELD, SOMETIMES YOU'RE THE BUG!

M Series Auto
Activa

DIESGAL
You are very  lucky that your husband supports you ., others are not so lucky and that is sad.
 I personally never had or have issues with my husbands CPAP, mask, noise or any of that.  
 I respect your feeling and thoughts, and I am not angry  I as a spouse do not know what you are going through. and i am sorry that any of you have to go through this and wish there wa a better and easier treatment. for all of you.
 My husband talk and worked things out and things are great and back to Norm.
 By reading these forums i learned how to better supportive, to give it time, what masks are better for diferent sleeping positions and so on.
Reading the bad made me realize how lucky i was ,.It helped me to know how all of you felt so If my husband sadi or did something I was more aware. Maybe some of our venting (lack of a better word) and questions will explain why your spouse/sig other is acting or doing wht they are doing.  
If i was not welcom to ask a question I would not have been able to help my husband  and things may not be great.
 Also, i became educated by all of you just by reading. I learned so much which has made me a better person.
 My husband and I are lucky we have each othe and that will not change. He is still the same person I married 12 1/2 years ago and the father of our 3 children.
 What really bothers me is how we are all attacking each other.
 We all come here for help.
 The doctors  are not there and do not really care .
We are all there is . Lets try to worl together.
  I wish all on both sides luck

I just reread what some of you wrote.
i personally  think the THE SLEEP APNEA ASSOCAITION should be the one to have a forum for spouses so that we as spouses can go to  different topics depending on our issue at eh moment.  to  learn and hear , and get advice.
 Just like some of you do not want only spouses i do not want only SA patients . It is the mix that i personally find helpful.
The insight that  some of you with SA  have  given me has been priceless and still needed at times. I use to come and just read for information and to educate myself. now it is all anger
 We are all consentrating so hard on this we are forgetting why we all joined in the first place.

I think everything has been said and this link should end.  Period.

First and foremost the ASAA Apnea Support Forum is a source of support for people dealing with their sleep apnea or those needing information about the condition. However the ASAA recognizes the need for spouses and partners of people with sleep apnea to discuss among themselves their experiences and concerns.

As a temporary experimental measure, we will soon be adding a separate forum for spouses and partners of those with sleep apnea to discuss their unique issues. It will be separate from the main section.

We do not want to dissuade people who have sleep apnea from getting the support and encouragement they need to get diagnosed, tested and treatment for their apnea. We have been pleased to see a number of spouses and other family members using our forum to seek ways to help their spouse or family member get information and support for their condition. But we also recognize that some spouses or partners of those with sleep apnea need to discuss among themselves the effect this all has on themselves and their relationships.

We ask for your patience in waiting for this separate forum, and ask that you help us to make sure that people coming to the main forum for their sleep apnea get the support and encouragement they desperately need. Your assistance in waiting for the new section is appreciated.

If you have any questions or comments please send me a private message.


_________________
Executive Director
American Sleep Apnea Association
6856 Eastern Avenue, NW Ste. 203
Washington, DC 20012
202-293-3650

Will wrote:

I think it is also difficult for single people to understand the complex of issues that a relationship faces surrounding SA and CPAP treatment, like any chronic disorder.

Personally I'm in favor of a spousal support forum, and asked about it in PMs to the site admin. I was basically told the same thing that the moderators have expressed here, the idea that people with SA might not seek treatment if they see how difficult it can be. However, I don't see why "Sleep Apnea Support Forum" only has to be about the person suffering from apnea, because the partners suffer in their own ways too related to SA (as has already been said). A good marriage is a true partnership, and whenever either spouse gets self-centered the relationship begins to deteriorate. The medical community doesn't even hardly recognize anything other than the physical need of the SA sufferer (very little to no emotional/psychological type support in adjusting to CPAP), and completely ignores the impact on the spouse. I think it is insane for a support site to take the ostrich approach, sticking its head in the sand and pretending like these issues don't deserve more considerable attention than being a sticky note in the "off topic" section of the site.

The problem isn't that we are trying ignore the impact on the spouse, what we are here for is the person diagnosed with OSA.  The folks that have been VERY vocal about wanting a forum, also have seemed to be less than supportive of their spouses (and in one case in particular, complaining about the treatment!)  

The last thing that we want to do is to give folks that are going to scare people away from treatment a voice here! If you want to call that censorship, so be it, but there are MORE than enough reasons that apnea sufferers can come up with on their own not to get treated.

While I agree it is very difficult for spouses, it is not life threatening if they don't seek treatment for their feelings.  It is life threating if people with OSA read about a spouse that is annoyed by the sound of the machine and decides that he/she won't get treated because of that!  

So in light of that, when we do get this going, remember, this is not a support group for folks that can't stand listening to CPAP, its a support forum for those that need to be treated for a life threatening illness.