husband is in denial

[franticwife]

Hi, i'm new here, but am desperate. My husband has been diagnosed with sleep apnea, and HATES the CPAP he was given. The therapist never checked up on him, and when I called them, I was told that they now have a new guy. I left a message, and was told he would call me as soon as he got off the phone. That was two weeks ago. My husband has severe headaches, which he didn't have when he used the CPAP for three weeks. Now he has them almost daily. After he was diagnosed a year ago, he had a heart attack. Not much has changed. He says he "doesn't have sleep apnea to speak of", which means I'm not supposed to speak to him about it. Anyone out there had a problem like this. I feel so helpless, but have fantastic kids, and grandchildren, lots of friends, and a life I would like to share with a man who seems to sleep all day. I really would appreciate any input.
Thanks so much. franticwife

[kteague]

Hello and welcome. Sorry your husband is being such a knucklehead about this, and causing himself to go thru more than he has to. The fact that he made the effort to get diagnosed and get a sleep study shows he has an interest in doing this, so that is in your (his) favor. Keep in mind that most new cpap users feel like crap, and any extra effort probably feels like moving a mountain to him.

If you as his wife don't know how to pull his strings, we certainly won't, but suggestions will abound (since you asked for them). Mine is that you be direct and open with him. As in...

"Honey, I've been concerned about how this cpap thing is going, and I hate to see you suffer if there are solutions. I've been doing a little reading, and I've found a community of cpap users online. Apparently it's not unusual to have problems with the treatment, and they share what has helped them so that others don't have to go through just trial and error in making the treatment work for them. In fact, (INSERT MALE NAME) said (INSERT QUOTE), and (INSERT MALE NAME) said (INSERT QUOTE), and...."

My guess is he'll develop an interest in finding solutions, if for no other reason than to not give you cause to continue talking about him to other men. And he will realize just how worried you are about him.

Only problem - what'cha gonna do when he reads this and finds out he's been set up?

Sorry you're worried. Don't really mean to make light of a serious situation. Hope his therapy is soon working better for him and that you find helpful solutions for him.

Kathy

[Goofproof]

Ask him to take out a very large life Insurance contract for you, since he knows, Sleep Apnea doesn't cause more health problems. Then when he's gone he can rest knowing, while he couldn't be with you, you'd be provided for. Maybe, he'd wake up. Until a person decides to change, he won't. Jim

[GeneS]

One tactic that might work is to get more aggressive.
You could go to the therapist's office without an appointment and ask to see him. If he meets you discuss the situation with him and ask if he will help. If he doesn't see you or help or is out go back the next day and repeat until he will see you. If he doesn't help find a new one who will.

GeneS

[Julie]

Is there a family member or close friend, minister, or even his family MD, who he respects? I know there is a concern about confidentiality, but if you could somehow present things to that person as simply being a matter of avoiding "a condition that sounds like a stroke waiting to happen", etc. and then ask them to dinner where your husband would have to really embarrass himself not to at least listen, then you might feel you've done what you could (which I think is important for you to believe).

[Bamalady]

Hi-

Some folks have a really difficult time adjusting to CPAP therapy, and many drop out just as your husband has done. Better follow-up has been shown to help, but your husband may not get that. It is sadly lacking as many here can tell you.

There was a recent discussion here about a member trying to get his wife to be compliant with therapy. Perhaps you can find something that will help by reading through that thread. Here is a link:

viewtopic.php?t=18829&highlight=wife

Good luck to you. I hope you can find something that will help.

[dogslife85]

Dear franticwife,
You could do what my husband did to me when I was in denial. He took the computer cam and recorded me while I was sleeping then showed it to me. He wanted me to know what he goes through at night because I was in denial. It made a believer out of me.

[DreamStalker]

Hi, i'm new here, but am desperate. My husband has been diagnosed with sleep apnea, and HATES the CPAP he was given. The therapist never checked up on him, and when I called them, I was told that they now have a new guy. I left a message, and was told he would call me as soon as he got off the phone. That was two weeks ago. My husband has severe headaches, which he didn't have when he used the CPAP for three weeks. Now he has them almost daily. After he was diagnosed a year ago, he had a heart attack. Not much has changed. He says he "doesn't have sleep apnea to speak of", which means I'm not supposed to speak to him about it. Anyone out there had a problem like this. I feel so helpless, but have fantastic kids, and grandchildren, lots of friends, and a life I would like to share with a man who seems to sleep all day. I really would appreciate any input.
Thanks so much. franticwife

Is he in denial or is he just simply ignorant about his condition and its dangerous consequences?

If it is the later, this forum can help him get on track and up to speed ... if he is truely in denial, only he can change that.

Best wishes!

[Guest]

Tactics you may want to try, in order of increasing heavy-handedness:

1. Ask him what he'd do if there were a criminal breaking into his house each night, coming up to his bedroom, and holding a pillow over his face dozens or even hundreds of times per hour, preventing him from breathing each time for 10-60 seconds. Ask him if he'd respond with NO ACTION AT ALL, as he's doing now for this IDENTICAL situation.

If that fails:

2. Ask him to imagine how he might feel laying in a hospital bed after a major heart attack, or perhaps a stroke that's, say, left him unable to speak and has made one side of his body numb and/or useless. As he's imagining this, ask him exactly how he'd feel laying there in the hospital bed reflecting on the fact that simply wearing an object on his face during sleep (no drugs, no surgery!) could've completely prevented it, and that he could have chosen to be, right at that very moment, out driving around, shopping, laughing with friends, etc. instead.

If he still won't budge:

3. You must keep a totally straight face and 100% dead-serious attitude for this one: tell him to pick a day when he's free, when the two of you can sit down and fill out the forms to increase the amount of his life insurance policy, and when you two can go and pre-purchase a cemetery spot to lock in today's cheaper rates. Also mention that once he dies (early of course, almost certainly when you're still around) you're going to have the headstone guy engrave "HE FREELY CHOSE AN EASILY-PREVENTABLE EARLY DEATH" underneath his name and year of death.

There are other persuasion techniques, but they're a bit more harsh. Try those, if you like them. And let us know what happens! Hopefully you can "reach" him.

[Wulfman]

This could be a "classic" case of the failures of the medical profession and the DME sector coming together with a hard-headed person. He may have been prescribed a high pressure on a cheap machine with no exhale relief technology and a cheap nasal mask which causes him to leak therapy air out his mouth.

Another problem is that long-term effects of sleep apnea can cause depression, too.

A combination of any or all of the above can lead to therapy failure.

Get a copy of his sleep study, his prescription and the details of his equipment (machine and mask make and models) and let us know a little more about what he's had to deal with.

He may have been set up for failure from the get-go.

Another possibility would be to get him on this forum to get some help. He definitely isn't alone and he needs to hear it from others who have "been there, done that".

Best wishes,

Den

[SleepGuy]

I had basically stopped using my cpap after a few years. I convinced myself that I got enough sleep on my side to make do.

Since joining the forum I've learned that apnea is far more than a sleep disorder. Low oxygen levels for hours on end actually cause all kinds of other very serious conditions, such as death, diabetes, heart disease, hypertension, stroke, depression, etc.

I'm glad I've been able to find ways to make my cpap tolerable. I'm happy to say that I sleep all night, every night on my cpap now and am very happy with it.

Some people on the forum helped an MD member put together an article on this point that's located under the "Collective Wisdom" button (under Sleep Apnea Awareness) but I think it bears repeating on this thread. It's been a while since this was brought front and center.

Are You Sleeping with the Enemy?

By Scott Standage, M.D.
email: drbandage@yahoo.com

If an intruder tried to suffocate you with a pillow hundreds of times a night, you’d call the police. In the case of sleep apnea, the airway blocks off and breathing will stop for up to several minutes--but the victim has no idea it's even happening. According to Ralph Downey III, PhD, of the Sleep Disorders Center at Loma Linda University Medical Center in Loma Linda, California, “The body, in essence, is being assaulted by the damage done from intermittent lack of oxygen to the heart, brain and other important organ systems, and yet such an assault goes unreported. That is, patients who have these symptoms don't always have their sleep apnea corrected. Perhaps in the light of a metaphor such as the one of being assaulted by our own sleep disorder, people would take more care of their sleep. Their hearts will thank them.”

Truth be told, sleep apnea may well be the most significant, costly, easily treated, and least understood public health issue facing our nation. The most recent studies predict that between 50 and 60 million Americans are “at high risk” for having sleep apnea. And very few of them have the slightest idea what sleep apnea is, much less that it may be affecting their lives in profound ways.

The Basics
Apnea is the medical term for “stopping breathing.” Sleep apnea is the temporary cessation of breathing during sleep, for intervals of 10 seconds up to minutes in length, depriving the body of oxygen. At some point the body arouses just enough to resume breathing and disrupt sleep, but usually not enough to awaken the individual. As a result, most people suffering from sleep apnea are not aware of their condition. In the most common type, obstructive sleep apnea (OSA), the airway blocks off when the tongue and/or other soft tissues in the throat relax and the individual simply stops breathing, sometimes for several minutes. This sequence can be repeated hundreds of times a night.

Apart from disrupting normal sleep patterns, sleep apnea wreaks havoc on the victim's body due to oxygen deprivation and physiological response patterns that occur during apnea events. There is no physiological signal stronger than oxygen deprivation to the brain. When blood oxygen levels are low, the body shunts blood from any and all organs, including the heart, to be sure the brain gets all available oxygen. On top of that, the sympathetic nervous system kicks in and releases a tremendous flood of stimulants and stress hormones, such as epinephrine (adrenaline) and cortisol, resulting in the well-known "fight or flight" response to danger.

Suppose somebody were to sneak up on you in the dark and lunge at you when you least expect it. Your heart races, the endocrine system instantly pumps out inordinately powerful stimulants. Sleep apnea victims are constantly confronted with a similar phenomenon and the accompanying red alert, each time their oxygen levels drop to a critical point. Another cruel twist happens when blood oxygen levels hover just above the critical desaturation level, getting just enough oxygen on board to avoid the arousal but not enough to provide the oxygenation that the body needs to stay healthy. The desaturation graph is remarkable for a very precipitous drop around the mid-to-upper 80% range for most people with sleep apnea.

Repetitive apneic events disrupt the normal physiological interactions between sleep and the cardiovascular system. Sleep fragmentation, with its accompanying increased sympathetic activation, triggers vascular endothelial dysfunction, increased oxidative stress, inflammation, increased platelet aggregability, metabolic dysregulation; in addition, it undoubtedly helps initiate and accelerate the progression of cardiac and vascular disease. Persuasive data implicate sleep apnea in the development of hypertension, and sleep apnea also contributes to cardiac ischemia, congestive heart failure, cardiac arrhythmias, and cerebrovascular disease and stroke.

At least if you’ve been attacked by a mugger you know to avoid ever going down that dark alley again. Sleep apnea, conversely, does not tip its hand. The victim’s conscious mind has virtually no recollection of the hundreds of assaults occurring during sleep every night.

It should not be surprising that common symptoms of sleep apnea include things like loud snoring and a gasping or snorting sound, high levels of daytime fatigue, irritability, depression, malaise, loss of productivity and work performance, extreme mental and physical exhaustion, loss of judgment, short-term memory dysfunction, and a number of other symptoms.

The Astounding Prevalence of Sleep Apnea in America
The numbers are shocking. The most recent studies have shown that one in four adults in the United States (31% of all men and 21% of all women over 18) is “at high risk” for OSA, based on analysis of the National Sleep Foundation’s 2005 Sleep in America survey. Another study showed that one third of all people over 18 (who visit a primary care doctor) are at “high risk” for sleep apnea. Based on the 2000 Census, that means that between 50 and 60 million Americans likely suffer from sleep apnea. This is far higher that previous estimates that projected that between 10 and 18 million Americans have sleep apnea. Increasing awareness of sleep apnea and improved survey screening tools, along with an aging U.S. population, seem to be factors in the increase in OSA prevalence estimates. No longer should sleep apnea be thought of as an affliction of middle-aged, overweight men. The disorder is dependent on a number of factors (including, in particular, anatomy) and afflicts untold millions of otherwise young and fit women and men.

The Unacceptable Human and Economic Toll
According to the National Commission on Sleep Disorders Research, 38,000 cardiovascular deaths a year in the United States are directly attributable to sleep apnea. On top of that, sleep apnea is associated with a large number of serious, co-morbid medical and psychological conditions, such as hypertension, abnormal heart rhythm, sleep deprivation, stroke, heart disease, diabetes, depression, memory loss, poor judgment, and change in personality. As a result, undiagnosed and untreated sleep apnea victims are significant consumers of healthcare services.

In Canada, sleep apnea victims were shown to consume 23 to 50% more medical services in the five years prior to diagnosis than control subjects, with hypertension and cardiovascular disease accounting for the majority of increased costs. A recent study from Israel showed that healthcare utilization was 1.7-fold higher by sleep apnea patients compared to the control group, with 25% of the sleep apnea patients who consumed the most resources accounting for 70% of the total healthcare expenditures. Other studies have demonstrated that successful sleep apnea treatment results in significant improvement in co-morbid conditions, including, specifically, cardiovascular disease, hypertension, diabetes, stroke, and depression.

Cardiovascular disease is the most significant killer in the United States, resulting in over 685,000 fatalities and $40.4 billion in healthcare costs annually. Hypertension healthcare costs in the United States are approximately $19 billion. While it is not known what percentage of all cardiovascular and hypertension healthcare costs is attributable to untreated sleep apnea, in light of the fact that between 50 and 65 million Americans are at high risk for the disease, it stands to reason that undiagnosed and untreated sleep apnea no doubt account for billions of healthcare dollars spent treating conditions that could be more effectively and far more economically treated as a sleep disorder. The human value in savings of physical pain and mental anguish associated with invasive procedures, surgeries, and chronic disease and death cannot be quantified.

Collateral Impacts
Collateral impacts arising from 50 to 60 million clinically sleep-deprived people in the United States are certainly incalculable. One report focusing on highway safety impacts from sleep apnea concluded that more than 800,000 sleep apnea-related highway accidents occurred in 2000, resulting in 1,400 fatalities and costing nearly $16 billion. If the same analysis were performed today using the new, much higher sleep apnea prevalence rates, the highway safety impacts would probably be twofold higher. Because extreme daytime exhaustion is prevalent among OSA victims, sleep apnea-related losses due to reduced worker productivity, industrial accidents, clerical mistakes, and so forth would be almost impossible to estimate, but, given the numbers, would no doubt amount to the billions of dollars annually. On top of this, the personal quality of life impacts—depression, personality changes, lack of judgment, irritability, utter exhaustion—cannot possibly be measured in economic terms.

Simple, Economic Treatment
The best news in sleep apnea is that it is a condition that is easily and economically treated. Continuous positive airway pressure (CPAP) therapy is the treatment of choice for obstructive sleep apnea and has been proven to be highly effective in treating sleep apnea and improving a number of co-morbid conditions. CPAP therapy consists of a ventilatory device that applies positive airway pressure at a constant, continuous pressure to help keep the airway open, allowing the patient to breathe normally during sleep. A number of other treatment options are also employed, such as surgery and dental appliances but questions remain as to the effectiveness of these treatment alternatives.

Where To Go from Here
Perhaps the biggest challenge in addressing the sleep apnea health crisis is lack of public awareness (including many doctors). Just to put this into context, 13,658 Americans died from AIDS in 2003 while at least 38,000 died from cardiovascular disease related directly to sleep apnea. Yet while virtually everyone over 14 knows about AIDS, precious few of the 50 to 60 million Americans plagued by sleep apnea have any idea that a treatable sleep disorder is impacting every aspect of their lives. At the same time, a little awareness on the part of the patient or his or her doctor is all that it takes for treatment to start and, hopefully, for the suffering to end.

Unfortunately, a large number of doctors are still not very familiar with sleep apnea or its treatment. Primary care physicians are in an excellent position to screen people for sleep apnea, as one in every three adults they see, on average, will be “at high risk” for the condition. An excellent place to start (both for doctors and for individuals) is to fill out a one-page, ten-question survey called the “Berlin Questionnaire” that is widely available on the Internet http://www.pur-sleep.com/uploads/Berlin ... naire.pdf. This questionnaire is simple and fast, and is highly predictive of sleep apnea—the positive predictive value of the survey for people scoring as “high risk” is 89%. Sleep apnea victims often have to work hard to convince their doctor (or insurance company) to refer them for a sleep study, so a "high risk" showing on the Berlin Questionnaire might be enough to convince them to move forward with further tests. If people are not satisfied with their medical care they should get a second opinion, preferably from a sleep disorder specialist. A number of overnight screening assessment tools are also available. A formal sleep study is necessary, however, to diagnose sleep apnea and obtain CPAP treatment.

[SithLord]

Frantic,

I second Wulfman’s comments and suggestions, and others above. I am probably only echoing their thoughts with my post . As a newbie and “older guy” myself (you did mention grandchildren <g>), I can see pieces of myself in your husband.

Sounds like he won’t do CPAP therapy because, in his mind, the cure doesn’t outweigh the disease somehow. I don’t know if his “cure” is faulty or if he feels there is really not much of a “disease” to worry about. Which side needs fixing?

He probably started CPAP therapy because everyone told him he should be on it? Despite logic and proof, deep down, maybe he’s not totally convinced he has a sleep disorder or it’s life threatening? If so, no therapy will ever be easy enough or accepted. I am not sure though if any more heavy-handedness than what you probably already have done is going to help. Instead of “if you don’t” and 2x4 games, make it “if you do”. Stress the things he would enjoy more or do different if he had more energy during the day. Is there any physical activity that you can beat him at now? . Carrot vs stick. For me, I used to love walking 18 holes with my bag over the shoulder, but turned into a cart guy. I hope to once again walk my way to the green and be breathing heavy only because I nailed one close.

Or maybe he accepts he has a problem, but rejects the whole concept of wearing a mask and being hooked to a “machine”? Tough one to overcome since it’s all emotions. CPAP can be embarrassing or show signs of weakness in proud eyes. Once I started joking around with family and friends about being a “hose head” and a heavy breather (hence the incongruent Darth persona), the support I received strengthened my will and got things out in the open. And self-depreciation is therapeutic as many have found. If you can get him to joke about things instead of snarling, he is on his way to acceptance.

I assume you trust his doctor has prescribed the right therapy and titration, the DME setup everything right, and the clinician armed him with enough knowledge of CPAP therapy. This is a big assumption and your husband may be pushing back for a good reason, albeit wrong motive. Is there any concern you have that CPAP won’t work as advertised? After initially reviewing the posts here, I realized that for my therapy to be successful, I had to self-study and be the master of my own destiny. I lost my wife (as in ex) and the kids aren’t home anymore, so I don’t have a coach. It’s obvious you are a loving and caring partner. You can study and be the CPAP expert for him. Remember, men don’t ask for directions when lost . Once he gets into it and sees some reward, he’ll probably be motivated to monitor and improve things himself.

Or maybe he has cheaper or ill-suited equipment that makes it more difficult than it has to be. If so, this is the easiest thing to correct. A good machine and comfortable mask can make all the difference. The top of the line machines and masks are there because of a reason (usually <g>). If you can, spend some of your own money and don’t rely solely on your insurance to over everything. To me, paying $15-20 a pop for return insurance on cpap.com to try different masks and sizes is a very small investment in the long run. There a lot of little things that you can also buy or do to ease the burden and make it more pleasant. Although I wish I was diagnosed a long time ago, I feel lucky to enter the scene now with much improved technology.

So, do you know your husbands real problem? Denial? Unwelcome lifestyle change? It’s a PITA and doesn’t work anyway?

Or all three?

[Lee Lee]

Find out WHY he hates it. It could be that with a simple switch of mask or machine, he could learn to love it, since his life would improve so much.
I have the same situation with a husband who's been diagnosed with apnea. His sleep study and titration study were awful for him. I hate watching him suffer. He has seen what a difference it makes by witnessing my improvement.
Our husbands will reach bottom eventually, just hope the bottom isn't as bad as it can be.

[cg30sailor]

I too resisted my gp's reccomendations too. I drive truck for a living and finally decided to to get a sleep study after nearly killing a family of 4 in wisconsin 1 night. Luckily I woke up.
Have him read these posts. this is an awesome place for information. great friendly people who help you out and alot of info you wont have to pay to get at a doctors office.
By the way if you want life insurance,you will pay alot more if you have untreated osa.
send him here.. Im glad i stumbled onto this website. good luck