Scared to death!

[SaldusMiegas]

Hello pgolson,

Congratulations on landing here... this is a great community which I also have just joined today, but I have visited for weeks and found lots of valuable advice here that helped me understand this condition, what comes next, helped me know how to talk to my DME and choose my CPAP machine and mask, and to make informed decisions before committing big dollars. I am grateful to the members and hope to be able to give back, which leads me to your post today.

You ask a timely question because I just recently got converted from apnea denier to now dealing with it. I was diagnosed a couple of weeks ago, got a CPAP machine yesterday, and looking forward to feeling a LOT better soon. Most importantly, my wife also bugged me about it and I can share a guy's perspective on how you might be able to help your husband.

Here are some thoughts, hope something in here clicks and is helpful to you:

* First you probably know it's hard to hear this stuff from a spouse. Your comment about how he reacts tells me that when you talk to him about this he takes it as criticism not to be taken seriously but dismissed along with other things as spouses sometimes do. I felt that way. I dismissed my spouse's genuine concerns because they were kind of lost in the other criticisms we say to each other way too often. I did that. You may not do that, but he might still hear it that way. It's easier for a guy to dismiss it than take it to heart sometimes. Rightly or wrongly, not your fault, it's just how we are.

* one thing you might consider is NOT continually talk to him across the room or across the table about it like you normally engage each other. Get next to him, hold both hands in yours, look him in the eyes for a moment before you speak, and tell him you love him and need him to listen to you for a few moments about something life threatening you are worried about. Get as far away from ragging on each other as you can. Don't do it in a place where you sometimes throw darts at each other. Do it in a way as if you were telling him his brother has a deadly disease. Nonverbal signals, ambiance, and context that work together to let him know this is something serious.

* Whatever he does for a living, if you needed advice on that you would go to him for it and not dismiss it, and if he came to your medical practice for a nurse's medical advice he would not dismiss it. Well, you are a nurse and you see something happening with him that when it happens with other people they must address it or their health deteriorates and they die younger than they would have otherwise.

- It's serious enough to show up along side diabetes and other chronic game changer conditions on life insurance applications. That means it is recognized as a risk to living a natural long life if it's not treated. Some brain cells die every night from lack of oxygen and the long term effects can be devastating.

- Like other progressive conditions, if you take control of it early then you can live a long happy life. But like other conditions most people can live with the early symptoms and ignore them until the disease or its side effects begin to wreak havoc in their lives.

* As you know, to record him while he is sleeping is a great idea but wasn't all that useful. I did that for myself using a sleep monitor app on my phone and it only convinced me I didn't have a problem other than minor snoring. Instead record him while he is awake. Show him what happens in the middle of a conversation, while watching TV, etc.

- Don't ambush him with it, get his permission if you can, or at least tell him you are going to do it. Be as respectful as you would be with one of your patients, and more because he is your husband. You know he won't be able to stay awake even if he takes it as a challenge.

- When you show him the video, don't comment too quickly. Let him absorb what's happening, it will shock him more than anything you can say to him. He will wonder if this happens other times that could impact his life and dignity around others. He will think of times he knows it has happened and he dismissed it, and now he sees what others around him saw.

* BTW, how is he feeling in general? What got me to explore this the most was feeling unwell for several months. I knew I was tired all the time. I knew I fell asleep a lot. But I had a lot of stressful things going on in my life with family and work so sleep wasn't a luxury I had much of anyways.

- For a while I could rationalize being tired even though I had a sneaking suspicion that something wasn't right. Eventually I couldn't shrug off how badly I felt and not just about being tired. Everything just felt lousy. My mind was foggy, judgment impaired, forgetful of new things because my mind couldn't transfer knew knowledge into long term memories. Tired all the time, achy.

- I Sought solutions in 5-hour bottles, supplements, vitamins. I could function but I wasn't sharp. It affected my performance at work. I knew something wasn't right, and I didn't like it when my wife brought it up.

- Went to the doctor for a few months and had lots of blood tests, stress tests, and other tests. There was nothing abnormal in any of the pathology but I felt miserable all the time. What I used to think was just getting old and sluggish due to being overweight, I now began to wonder if there was something seriously systemic like a hidden cancer going on. "General malaise" the doc called it. And that is a notable symptom of sleep apnea as you surely know.

- One day my doc and I talked about sleep and I was politely dismissive, but he suggested we could do a sleep study and just rule this out. Quick and easy, nothing to lose, and potentially lots to gain. I told him I didn't like the idea but if it would help me feel better again I would do it.

- Is your husband feeling anything similar to what I describe above that he will talk about with you? How is his performance at work? That is something that defines us as men and it's very delicate. Constant fatigue affects how we think and function. I know my work suffered to some degree. I am happy to realize it's not just because I was getting old and losing my edge. And I am also excited about the prospects of sharpening the saw again with CPAP therapy.

* finally, there is a video I came across on youtube that was interesting from a guy's perspective and done by a guy. You can go to youtube and search on "The straight honest truth about Sleep Apnea and CPAP". It's a regular guy named James talking to other guys about the topic, how he himself was stubborn about it, what sleep apnea does to us, what it does to our families who depend on us, and why we should take it seriously. I think it might speak to him in a way that he might not be able to hear coming from you.

Your husband is a lucky man for you to care so much about him.

Let him read this thread if you want. He can post back here to this awesome community with questions or even just search the forum anonymously as a guest for earlier discussions about questions he has (I did that for a couple of weeks and it was most helpful). Or he can PM me via your account if he wants to discuss privately I will be happy share more of my own experience.

best wishes,

Saldus Miegas

[retired_guy]

Whoa, Sal, buddy... You may have been hanging out around here for awhile but once you decide to say something, you get on it!

Thanks for the above.

...and welcome to the site.

[trailrider]

Sal's advice is worth bookmarking for future reference!

[DariaVader]

Maybe you can get ahold of an oximeter and talk him into wearing it for a night. The resulting Desats record might be more convincing....

[pgolson]

Thank you all for the very helpful replies. My husband responds to everyone the same way he responds to me, if the topic is something to do with him having anything wrong. Not just medically, but he has a hard time admitting to his own flaws, weaknesses etc. I don't mean to sound unkind, but he rarely admit mistakes. He recalls all conversations, etc or so he thinks and very rarely admits he recalls something inaccurately. Even with obvious proof he's wrong. He was asked to leave nursing school before obtaining his degree, basically because in clinicals he did things his way instead of following protocol. This was 6 yrs ago. I have noticed since then that with anything medical, it seems he has to show that he knows more than those in the field. My husband and I rarely argue. I don't nag him about things because I learned years ago that it doesn't help the situation. He had a kidney transplant 10 years ago and has since developed diabetes (7 years ago) which is not well controlled. His A1c was over 10 at a recent appt. His blood pressure is poorly controlled as well. As I said his apnea has worsened as he has gained weight. I don't just live in fear of the apnea, I fear his kidney will fail at any time. He is secretive about his appts. I find out about appts after the fact. Because of HIPPA laws, I can't get the Dr to talk to me without his permission. I do fear him falling asleep while driving and killing himself or others. I know for a fact that he has nodded while driving. He says has not. As you can see, the apnea is only part of the problem. I do not depend on him financially. For reasons I won't go into, ( not medical), my husband does not work so I can't address how the apnea affects job performance. He is a terrible procrastinator which has also worsened over the past few years. I do take some comfort in the fact that as the one who pays our bills, if something happens to him, financially I'd be ok. Little comfort when weighed against the lose of him. I've gotten to the point where I'm just waiting for the inevitable. Heart attack, stroke, notification of a motor vehicle accident, death.....

[AlanE]

Yes, it is your choice to wait for the inevitable or not. No one here can/will make the choice for you. If you choose to wait for the inevitable, guess what you are going to get? I suppose if it were me, I would be asking myself 'which version of my spouse do I want to live with? One that we can enjoy life together or one that sits in an urn on the mantle.'

Sorry if this sounds rude but you still have the luxury of a choice.

Good luck.

[truetopath]

Sorry you're having such a tough time getting through to your husband. As a fellow nurse you know we make the worst patients, but I'm also a male nurse, so absolutely the worlds worst patient. My apnea was undiagnosed for at least 10 years despite pleas from my wife(also a nurse) to get tested because honestly I was a stubborn SOB, which I now see was probably an effect of untreated apnea. To me it sounds like your husband had some major medical stuff happen in the last several years, and is quite possibly depressed and feeling like a failure. He is probably lashing out at you because he hasn't slept in years and is ticked at the world. I know the feeling well and I actually apologized to my wife, after getting treated and becoming human again, for being such a jerk. I truly wish you the best of luck, but unfortunately us men are pretty thick skulked, and unless it's "our idea" we don't get things checked out usually.

[Mark Douglas]

Yes, it is your choice to wait for the inevitable or not. No one here can/will make the choice for you. If you choose to wait for the inevitable, guess what you are going to get? I suppose if it were me, I would be asking myself 'which version of my spouse do I want to live with? One that we can enjoy life together or one that sits in an urn on the mantle.'

Sorry if this sounds rude but you still have the luxury of a choice.

Good luck.

And what choice would that be? You can lead a horse to water but cannot make it drink.
Are you saying try to enjoy him while he is here? A man waiting to die and won't accept any help?

This man sounds a lot like my father. I learned years ago there was no point arguing with him and ultimately he died from his choices. I call it malignant stubborn.

pgolson I feel for you and hope something here helps you. From what you write I wonder if he has some degree of ADD? I'm a horrible procrastinator even to the point of having internal conversations with myself about why do I not something I know is good for me? I was quite small as a child and bullied by bigger kids. I think that has made me rebellious to the point of a diagnoses of defiant oppositional-behavior. I call l it malignant rebellious. In my case amphetamines are helping to a degree and let me see myself for the outside.

O wad some Pow'r the giftie gie us
To see oursels as ithers see us!
It wad frae mony a blunder free us,
An' foolish notion:
What airs in dress an' gait wad lea'e us,
An' ev'n devotion!

The point made at the beginning of this thread about him being afraid is probably dead on but what can you do beyond what you have already done?

Two monks were on a pilgrimage. One day, they came to a deep river. At the edge of the river, a young woman sat weeping, because she was afraid to cross the river without help. She begged the two monks to help her. The younger monk turned his back. The members of their order were forbidden to touch a woman.

But the older monk picked up the woman without a word and carried her across the river. He put her down on the far side and continued his journey. The younger monk came after him, scolding him and berating him for breaking his vows. He went on this way for a long time.

Finally, at the end of the day the older monk turned to the younger one. "I only carried her across the river. You have been carrying her all day."

Is it time to stop carrying him?

I wish you well.

[archangle]

It's like living with a three pack a day smoker, a drunk driver, a drug user, a texting-while-driver, a diabetic who won't do insulin, etc. He has self-destructive behavior and is unwilling to change.

Unfortunately, I don't have a simple answer.

[retired_guy]

His bad decisions are working for him. He's home, he's feed and clothed, he's fine.

Sometimes when a person is making bad decisions the only way to change that is to change the environment completely. If he were a practicing, knock down drunk that refused to get help, then the only recourse would be to kick him to the street. The hope being he would then finally agree to some life changing strategies.

This isn't much different. He's on a path to self destruction and isn't particularly interested in changing that. You must quit enabling him if you wish for him to ever change.

It's time for the "I've had enough" speech. The one that says you are no longer interested in watching him die a little at a time day after day, so he really needs to find someone else willing to do that. You don't need to debate the right or wrong of his physical condition with him anymore. You just need to stand firmly and say "Lie to yourself all you want, but for me? I've had enough."

That's tough love, but it is probably the only one that has any chance of keeping him alive.