looking for support as apnea significant other

[sjenniferr]

I am looking for an online support group as the fiance of a person that suffers from severe sleep apnea. I need help coping with the mood swings, not wanting to do anything, etc. that comes with this territory. I have tried to be patient, but I am about at wits ends and ready to walk away. I am trying to find someone to talk to that will help me be more patient and understanding and help me find the man I fell in love with.

[ozij]

I need help coping with the mood swings, not wanting to do anything,

If you mean he doesn't want to do anything, Jennifer, then you're in for deep trouble.

Do either of you realise the healt implications of this disease? It's neither about snoring nor about quality of sleep (though bouth are important issues) it's about being choked many times an hour when you're asleep. It's about not getting enough oxygen to any part of your body, especially not to your brain. The following video clip explains it.

http://www.resmed.com/en-us/clinicians/ ... 40x380.swf

If the man is refusing to treat that then he has very little respect for his own body or his own health -

Severe sleep apnea is a treatable condition - you don't have to put up with the mood swings of someon who refuses to have it treated.

Think deeply and seriously about you commitment to nurture a person who won't take care of himself. Are your sure that's what you want for your future?
O.

[jules]

Is he compliant with treatment? in other words does he use his xpap at night and for naps?

Does he need help with it? Does he get data and needs to have others look at it? Does he needs a new sleep study to change the pressure? Does he wash his mask and hose often, use distilled water, change the filters on the machine?

In other words, how serious is he on his treatment?

[kteague]

Welcome to the forum. Is your fiance not being treated for his sleep apnea? If he is not, you may or may not be successful in getting him to get treatment. If he is being treated and he's not improving, he may need some adjusting to his treatment. Since you know how he is now is not who he's always been, that's a good indication that with therapeutic treatment you'll likely see the better person again. Can you give us a little more information, like was he diagnosed with a sleep study, and is he on cpap treatment? It's hard to say much more without knowing more. Hang in there.
Kathy

[Julie]

Ozij - I think she's referring to his not wanting to go out and do things together, rather than not wanting to use Cpap... but in any case, she is trying to learn more and get support for the relationship, which is a very good thing. I also think it would help (here) to know more about whether he is using Cpap, and with what equipment, etc., whether he's satisfied with it, or not compliant and why not.

[ozij]

I think you're right, Julie.
O.

[Guest]

I am congahands' wife. email me and I can be at least one person who understands, and can speak to some of the issues. Congahands is "waking up" because of starting treatment and I am so grateful he is "returning".

[DreamStalker]

If you want to find the man you fell in love with, you need to help him take control of his treatment.

The sleep health industry is good at diagnosing the OSA condition, but unfortunately terrible at treating it as they just hand the patient the equipment and then tell them to go home and sleep with it and make it work. The patient MUST take control and learn to monitor and manage their treatment.

The easiest thing to do is to convince him to join and become a member so that the experienced folks here can help him succeed ... then give him the time and support he will need.

[alnhwrd]

sjennifferr,

Whether he knows it of not, your fiance is very blessed to have someone like you in his life, someone who cares about him enough to seek out help in understanding and coping with this strange disease that he has and the even stranger treatment for it. For starters, I would suggest you click on the Yellow light bulb at the top of the page for some information about it. I especially recommend the following link:

our-collective-cpap-wisdom/CPAP-stages- ... -good.html

Read the last half of the article titled, "What is Feeling Good?" Even with treatment, people with severe sleep apnea still can have relationship problems as they climb up out of the pit. The good news is that successful, self-managed therapy can and does bring people back to life. And you can help him with that. The ongoing love and support of my wife has been wonderful, and she has earned her place in heaven and my heart by giving it to me. I hope the best for you and your man.

[LoQ]

I am looking for an online support group as the fiance of a person that suffers from severe sleep apnea. I need help coping with the mood swings, not wanting to do anything, etc. that comes with this territory. I have tried to be patient, but I am about at wits ends and ready to walk away. I am trying to find someone to talk to that will help me be more patient and understanding and help me find the man I fell in love with.

Support may be found here: http://www.apneasupport.org/forum-24.html

What I think you need more than support is sympathy. I want to say this carefully, because I know full well there are some conditions other people have that I totally could not handle as their daily care-giver. I have a LOT of sympathy for these people, however. To me your post doesn't sound so much like you can't handle living with someone who has a problem so much as you just have no inkling of what he is going through. That's why you need some sympathy----for him.

You might try some sleep deprivation experiments. (You do know that sleep deprivation is one of the tactics used by militaries to break down POWs, don't you?) Try this, at least as a thought experiment, if not an actual experiment. When you go to bed tonight, set your alarm to go off 30 minutes after the time you go to bed. When it rings, wake up, hold your breath for a full minute, and reset it for another 5 minutes. Then wake up again, hold your breath for a minute, and reset it for 5 minutes, and continue in 5 minute intervals for the rest of the night. (That will approximate an AHI of about 12, which is moderate, though holding your breath while awake is not as bad as apnea in your sleep.) Keep doing this until the full 6 hours you're going to allow yourself in bed (note I didn't say asleep) has passed.

Then do that again the next night; and the next night; and the next night.....

Somewhere around July of next year, check your "mood." Are you nice and cheerful to everyone all the time? And see how much you feel like doing. This is what your fiance is trying to cope with.

I do appreciate that it is not fun for you when you want to go out and do things and he doesn't. You may have to examine the cards and ask yourself if you can really live with this. I am single, and I know the chances of anyone willing to put up with this for me are slim. So I can't really fault you if you decide to walk away. It would take a fairly noble person to stay, especially if he isn't getting treatment. I wonder, though, if you really want to make that sacrifice? I'm not sure I would, quite honestly. Most people who end up caring for a spouse with significant health problems were married before the problems began.

You could do your fiance a significant favor by encouraging him to get treatment and stick with it. Who knows, maybe he will revert to his previous mood and vitality. It can happen, so be an encouragement to him. He may not be able to think as clearly as you can, and patience may be required.

[plr66]

What I think you need more than support is sympathy........
Try this, at least as a thought experiment, if not an actual experiment. When you go to bed tonight, set your alarm to go off 30 minutes after the time you go to bed. When it rings, wake up, hold your breath for a full minute, and reset it for another 5 minutes. Then wake up again, hold your breath for a minute, and reset it for 5 minutes, and continue in 5 minute intervals for the rest of the night. (That will approximate an AHI of about 12, which is moderate, though holding your breath while awake is not as bad as apnea in your sleep.) Keep doing this until the full 6 hours you're going to allow yourself in bed (note I didn't say asleep) has passed.

Then do that again the next night; and the next night; and the next night.....

Somewhere around July of next year, check your "mood." Are you nice and cheerful to everyone all the time? And see how much you feel like doing.

Wow, LoQ, after reading your incredibly graphic description, I sure have sympathy for me!!

In all seriousness, I was one of those who was "scared straight" as soon as my MD called me one morning to tell me an oxygen machine would be sent to my house that night...and that was 2 days before he got me in on an urgent basis to get my sleep study. Therapy compliance has never been a question for me, as I so want to feel like myself with a brain again. But I had not thought of it in quite the terms you have described here; and it really is an awesome thing that our bodies have struggled with this to the point of some of us being "the walking dead," as someone put it today here, before we found help. I am grateful, and I dearly hope that my personality hasn't been completely and irrevocably destroyed.

Thanks for your post LoQ.

[DoriC]

LoQ, as the daily caregiver for my husband's treatment, the hardest thing for me is not knowing what it feels like to have sleep apnea and what the equipment feels like. Although your description was painful to read, it reinforced my determination to stay the course and never give up . Believe me, there were times at the beginning when I thought I couldn't do it one more night. He is a senior with other health issues but now he is taking a more active part and that makes it easier.

Sjenniferr, it's been 3 months now and my husband's quality of life has improved so much, he looks healthier,his sense of humor is back, more energy, no more planning the day around his naps, he watches TV with me at night and actually follows the plot, and many other ways. If I had any doubts they were removed last night when he went to sleep without his mask(long story) and in the first hour I really saw what sleep apnea is all about,never realized it before, the heavy snoring, many apnea events, constant leg movements, restlessness, half asleep, half awake, just awful. I finally got the mask on him, and he slept peacefully the rest of the night. You can PM me and I'd be glad to help in any way I can. I owe a lot of payback to the folks here. Dori

[ozij]

I thought you might like to know that you have be registered member in ordre PM other members - you can't to that as long a you remain a guest.

O.

[sjenniferr]

Wow! What a response! And after reading those I realize that I really need to quit thinking about myself! (Where have I heard that before?) While it is very hard for me to understand what he's going through, I do know that I want to make a very serious effort to try to. I don't even know the name of his doctor, or the type of doctor he is, or what town he's located in, or when his appointments are.. nothing! I need to spend more time listening to what he's saying and less time thinking about how it affects me! This isn't about me! I wouldn't want to do the sleep deprivation experiment that the one person suggested... but what does that say? On some level I understand that it would be miserable to not get any sleep! So I'm going to spend some time looking through the forums here and try to get some kind of understanding about what he's going through and how I can start being of some help instead of adding more stress for him. My job right now is to be here for him, be patient, try to pick up some slack and help out with the things he doesn't feel like doing. Yes, I'd like to have the man I fell in love with back. But at the same time, I'm still crazy about him and I want to be with him. I'm going to take a more active role in encouraging him to see this through... not for myself... but for himself. Regardless of whether I'm around or not, he still needs to get better. Thanks for a huge slap in the face! I sure needed it!

[Arthurs]

Persistence is key here. Sounds like some further sleep study is needed to get to the bottom of this. Also see if the CPAP machine has some data capability and software available, plenty of help here on understanding the results in addition to what you get from the doctor. Each person is unique in their needs, hopefully with a better understanding of the problem you'll find some answers that will improve things significantly (and a happier relationship). For some here it can take some time to find the right treatment that works.