CPAPtalk.com

DoriC wrote:... I told him quietly that if he didn't do this, I would wake up one morning and find him dead beside me and he would leave me with that guilt for the rest of my own life that I should have done more to save him. That would be his legacy to me. For whatever reason, that seemed to reach him as nothing else I had said before did, and his next words to me were, "Let's Go". As a matter of fact, he says those same two words every night when he puts on his mask and I smile. If you think he might read them, you can print out some of my posts especially the early ones and leave them lying around. I hope I didn't overwhelm you with too much emotion but you've touched my heart. Dori

WOW just show him DoriC's post above. Very moving, pass a tissue

I haven't read the entire thread but there are definite shades of familiarity in this story with me. I had a similar experience in the sleep lab and was very depressed on my ability to deal with the mask and blower. I had a split study during my initial sleep study and absolutely woudn't tolerate the mask. The titration study went much better for me as they started at 5 cm which nearly felt as not enough air. I fell asleep and then woke up when they had it set to a whopping 10 cm of pressure. This felt like trying to exhale against a hurricane and I quickly panicked. It did take a while to settle down. Now I am over 2 years into this and can not imagine sleeping without the mask. I still struggle to get the best therapy possible but, not matter what, I am much better off now than the AHI of 90 that I probably lived with for the better part of 20 years.

I would venture to say that his fear is pretty typical. He probably does not need convincing as to the seriousness of the condition because the fear of the mask is probably more significant than the fear of dying of apnea complications (fatalism). What he really needs is a support system to help to not fear the mask and get him through starting the treatment and sustaining. His best bet would be to find someone he knows and respects that is a cpap'r. Once this relationship is started, pointing him to this support system (cpaptalk.com) would be a great second step.

As many have said, he needs to want the help before anything positive can come of it. Best of luck.

KatieW wrote:I wanted to add this link, to a support group for spouses:

http://www.apneasupport.org/forum-24.html

Katie, Thanks for that link. I'll check it out, I could have used it at the beginning when I thought I was the only spouse on the planet going through this and how could anyone here possibly understand or help me, but I'm glad I found this forum first which has become my home and the answer to my prayers.

Hi,
Thank you so much.
We do have a very comfortable chair that he naps in quite a lot. He goes into the bed at night & some during the daytime. But, he's really not sleeping then, he thinks that he does get some sleep, but I hear him snoring, gasping for air, talking, his arms & legs moving around everywhere. I go in a every few minutes, to try getting him turned over on his side. But he does get some real sleep in his chair. His doctors appointment is tomorrow, I just hope & pray that his doctor will help us out with this, so that we can start getting David some help.
I have unconditional love for David, I will always have. And I don't mean to be enabling David's disease, I would never do anything to hurt him, but I do understand what you & everyone is saying to me, I may be hurting him more, by trying to help him. I hope tomorrow evening, that I have some good news to say. We did talk to each other for a few minutes today, and David said to me that he is so tired of being tired & over weight. His comment was "I just don't know what I'm going to do"
I listened to everyone here and decided to keep my nagging mouth closed, as he continued talking to me. He said that he knows that he has to do something, The only thing that I said was, that I reminded him about his dotors appointment tomorrow, and he said that he is going to tell his doctor the same thing (he doesn't want to feel so awful any longer, he wants some help)
As he was looking at me when he was talking to me, it just breaks my heart to see him looking so sad and tired, his eyes all swollen with dark circles under them. I had to escape to the restroom with my tissue & visine.
Thank you all for you nice comments and great advice,
Judy

SuperGeeky wrote:frtwome, my heart goes out to you!! Many, many passionate posts, you've hit at the heart string of us all!!

Situation is very similar to being married to an Alcoholic. Reasoning part of the brain is oxygen deprived. Rationality is diminished and denial is a 'nice warm blanket'.

I would identify the 'enabling' behavior. How am I enabling the disease?? Set up healthy boundaries, unconditional love for someone who is very sick, but not enabling the disease. Easier said then done!! You can get drawn in, exhaustively (physically and mentally) enabling someone with OSA. Your codependent behavior can cause you to suffer tremendously...

Do you have a nice 'Recliner' your husband can sleep on?? Maybe that's a nice start...

My prayers and thoughts go out to you,

SG

Thank You for this, it is very much appreciated, I am printing this out to take with us to David's doctor tomorrow. I'm sure with answers from his doctor, and coming back on here, I should be able to know what I am suppose to buy.
Can you tell me, how long does it take to receive the machine, mask and everything he needs. Do we set this equipment up ourselves, or is there someone that comes to our home to set it up?
Thanks,
Judy

rooster wrote:

frtwome wrote:On the prescription that I will be getting from David's doctor Dec. 16th. Will it tell me what kind of CPAP machine that we have to buy? How am I suppose to know what to get. Is it his doctor that I get this information from?

Here is a document I give to all my friends when they will be visiting the sleep doctor to discuss the results of their sleep study.

Things To Ask About Your Polysomnogram (PSG) and Titration Study

1. Did I have any central apneas? How many?

2. Were there any comorbidities? What were they?

3. Did I breathe or leak through my mouth? How often? What do you recommend to prevent it?

3. Did I exhibit Positional Sleep Apnea (PSA)? Was my apnea more severe in one sleeping position as compared to others? Is my pressure requirement higher in one position as compared to others? (Often sleep apnea is more severe when sleeping on the back.)

4. Is there anything else unusual about the results?

5. How will I know my therapy is preventing apneas?

6. I am determined to own a data-capable machine and software to monitor apneas, hypopneas and mask leak. This will allow me to call your office with specific questions if I have problems with the therapy. Will you help me with the appropriate prescription?

In addition to the questions:

1. Get a copy of your PSG. It is your legal right to have one.

2. Get a copy of your CPAP prescription.

3. Make sure the prescription calls for a humidifier with the machine.

After that meeting come back here and get help from the members on which machine you should acquire. In the meantime, try to get hubbie to sleep on his side or tummy. It is not the solution, but it helps some people a little bit.

God bless you.

I listened to everyone here and decided to keep my nagging mouth closed, as he continued talking to me. He said that he knows that he has to do something, The only thing that I said was, that I reminded him about his dotors appointment tomorrow, and he said that he is going to tell his doctor the same thing (

Good for you!

One way to talk to people like that is to use paraphrasing - where you basically you repeat what they said in other words.
usually "I hear you saying that you are really fed up with this situation" It requires listening and letting go of your agenda, then later maybe "So what do you think you can do about it?" But it really works and people feel really heard and validated.

frtwome wrote:Thank You for this, it is very much appreciated, I am printing this out to take with us to David's doctor tomorrow. I'm sure with answers from his doctor, and coming back on here, I should be able to know what I am suppose to buy.
Can you tell me, how long does it take to receive the machine, mask and everything he needs. Do we set this equipment up ourselves, or is there someone that comes to our home to set it up?
Thanks,
Judy

<snip>

Judy,
Good luck on the visit. Thinking of you from down under

DSM

Hi Dori,
I had such a wonderful feeling inside, after reading this from you, and just an overwhelming feeling of hope. It makes me think that if you can do it, I should be able to do it too. I know how very hard it must have been for you, to have to put it to your husband in such harsh hurting words, and not so sure I can even do it without flooding us both with my crying. But, the unfortunate part is that what you said to him is true. The thought of something like that happening are the thoughts that are constantly in my head, and eats at me every single moment of the day.
I am a bit selfish, I want him to be with me for the rest of my life. I couldn't live withthe guilt that I didn't force him to get help. His doctors appointment is tomorrow, And I pray something great will happen tomorrow, that will help bring our lives back the way they were before.
I do want to go back and read your posts, I wish you all the luck in the world, and thank you.
Judy

DoriC wrote:Welcome, I am The Spouse too, maybe the only one on this forum I can think of who has stayed the course and turned my husband's and my life around. So I TRULY know what you are going through and you've brought me to tears. Since this is such a complicated situation, I'd welcome a PM from you if you'd like, to discuss some specific personal actions I took to get my husband's attention. In Mike's case, he was more frightened than angry and rather than lash out at me he just retreated into a shell where I couldn't reach him. I remember vividly at the end of his denial stage after I just stopped "nagging" completely and when he started to ask me a few questions on his own and read some of the paperwork and seemed more reachable, I finally found the hard words that made him want to fight.(Black Spinner would be proud of me). I told him quietly that if he didn't do this, I would wake up one morning and find him dead beside me and he would leave me with that guilt for the rest of my own life that I should have done more to save him. That would be his legacy to me. For whatever reason, that seemed to reach him as nothing else I had said before did, and his next words to me were, "Let's Go". As a matter of fact, he says those same two words every night when he puts on his mask and I smile. If you think he might read them, you can print out some of my posts especially the early ones and leave them lying around. I hope I didn't overwhelm you with too much emotion but you've touched my heart. Dori

Hi,
Yes, I see what you mean, it did work for me today. It was only a few comments from him, but it's a great start. I will learn to listen more, instead of talking.
Thank You,
Judy

BlackSpinner wrote:

I listened to everyone here and decided to keep my nagging mouth closed, as he continued talking to me. He said that he knows that he has to do something, The only thing that I said was, that I reminded him about his dotors appointment tomorrow, and he said that he is going to tell his doctor the same thing (

Good for you!

One way to talk to people like that is to use paraphrasing - where you basically you repeat what they said in other words.
usually "I hear you saying that you are really fed up with this situation" It requires listening and letting go of your agenda, then later maybe "So what do you think you can do about it?" But it really works and people feel really heard and validated.

Hello, frtwome. I know how difficult this must be for you, as you can see SO clearly how much your husband is suffering and how much this affects the lives of everyone around him. It sounds like he may be reaching the point where he's absolutely "sick and tired of being sick and tired!" I hope that the doctor will lay it on the line for him tomorrow. Untreated sleep apnea can cause heart attack, stroke, high blood pressure, memory impairment, diabetes, heart arrythmia, obesity, car accidents, etc. It can shave years off your life. I know that he's probably heard all this before, but sometimes we have to be READY to really hear the message.

I hope that your husband is ready to do this, and that he'll stick with it. CPAP is an adjustment process, both emotionally and physically. It isn't always easy, and it can take a while to get any bugs worked out. It does take persistence, which can be especially difficult when you're so tired. Proper mask fit seems to be one of the biggest issues. And it will really help if he can get a full-data capable machine, so he can monitor his therapy. There is a lot of information and support on this forum regarding those things, and many people here are happy to assist with questions.

Each medical equipment supplier handles things differently. I believe that some will come to your home, while with others (most?) you need to go there. Depending on your insurance, you may have choices among several local DME suppliers, so you may want to find out your options in that regard.

You do need to consider that the approach you've been taking has not, until now anyway, achieved the results you've hoped for. I don't mean to suggest that you should give up caring or trying, but sometimes our loved ones do need a little space to come to grip with things on their own. He may be digging in his heals, not willing to let you "win" this one. It can become a power struggle after a while. He sounds so tired and must be mentally exhausted. Many of us here have lived that experience.

You and your husband will be in our thoughts when meeting with the doctor tomorrow.

Best wishes,

DreamOn

LATER EDIT:

frtwome wrote:Do we set this equipment up ourselves, or is there someone that comes to our home to set it up?

There's really nothing to setting up the machine. The DME will "program" it for you, you plug the xPAP machine into the wall, attach the hose between mask and machine, and that's about it. There's an on/off button. The DME should go over equipment cleaning, mask adjustment, and the basics of machine operation. (Anything that's missed can be learned here!) What's most important is selecting the proper mask when you meet with the DME -- both the type of mask (nasal, full face, nasal pillows, etc.) and proper fit -- which is very individual depending on a person's facial structure, whether they mouth-breathe, etc.

If you get a machine that's capable of reporting full data (not just compliance data which is only "hours of use"), we can help you learn how to check the nightly AHI (hourly apnea/hyponea index) and leak information from the machine's LCD screen. It isn't difficult once you've done it a few times. Some people get computer software to be able to see charts that show apneas and hypopneas. It depends on how much you/your husband want to be involved in his therapy.

I know there's a lot to learn. We all start out knowing nothing about this, and pick things up little by little. The most important thing right now is that your husband gets started! It can make such a HUGE difference in our health and mental outlook!!! We don't need to suffer when there is therapy available.

frtwome wrote:Hi,
Thank you so much.
We do have a very comfortable chair that he naps in quite a lot. He goes into the bed at night & some during the daytime. But, he's really not sleeping then, he thinks that he does get some sleep, but I hear him snoring, gasping for air, talking, his arms & legs moving around everywhere. I go in a every few minutes, to try getting him turned over on his side. But he does get some real sleep in his chair. His doctors appointment is tomorrow, I just hope & pray that his doctor will help us out with this, so that we can start getting David some help.
I have unconditional love for David, I will always have. And I don't mean to be enabling David's disease, I would never do anything to hurt him, but I do understand what you & everyone is saying to me, I may be hurting him more, by trying to help him. I hope tomorrow evening, that I have some good news to say. We did talk to each other for a few minutes today, and David said to me that he is so tired of being tired & over weight. His comment was "I just don't know what I'm going to do"
I listened to everyone here and decided to keep my nagging mouth closed, as he continued talking to me. He said that he knows that he has to do something, The only thing that I said was, that I reminded him about his dotors appointment tomorrow, and he said that he is going to tell his doctor the same thing (he doesn't want to feel so awful any longer, he wants some help)
As he was looking at me when he was talking to me, it just breaks my heart to see him looking so sad and tired, his eyes all swollen with dark circles under them. I had to escape to the restroom with my tissue & visine.
Thank you all for you nice comments and great advice,
Judy

I'm so glad he talked to you and that you did the hard job of giving him the space in which to be able to talk to you. Good job!! I pray the appointment goes well. I think I can safely say that we all have had to face a bit of what he is facing. I can say for myself that when I knew I had to wear a mask every night I felt a bit sorry for myself. I didn't like going to the sleep labs or dealing with the whole thing in general. However, after more than 2 years of being 100% compliant (that means I wore my mask every night), I feel so much better that I would never go without my mask now. As you do, I understand how important it is to my health.

I'm assuming from the symptoms you've described that your husband will be prescribed a sleep study and after that a machine, mask, and other supplies such as hose. So, keep the following in mind as you go along in the process of him getting what he needs for the apnea. Also keep in mind that for some, it can take months from the first sleep study to get the prescription, machine, etc. I had a sleep study. It took several months for the doctor to interpret the study and issue another sleep study which is called the titration sleep study.

It's just one step at a time.
- Go to doctor
- Go to sleep study (stay overnight at a facility where they gently glue little sensors many places on the body so that they can tell how the body is reacting during the night
- Wait for doctor to interpret the sleep study and issue a prescription if the doctor thinks your husband has apnea
- The doctor will prescribe a second sleep study so that your husband can use a machine and mask allowing the sleep lab to determine what the right range of pressure is needed for his apnea.
- The doctor will then prescribe a machine. Get on the forum and ask if the machine prescribed is what others recommend you get. We'll all let you know what we think of it and how to handle the situation if it is not. Thanks to the forum I got a really good machine that is comfortable for breathing and I can read my own reports. Others here helped me learn how to do that and now I can tell when I'm getting good therapy. A family member of mine got a machine that didn't have a smart card and he was still tired. He had to go to another sleep study where they decided he had been at the wrong pressure (for a YEAR)! So, being able to read your own data keeps you healthier.
- FInd a good store to get your machine from. Your insurance will let you know which stores you can go to. The store for this type of product is called a "durable medical equipment provider (DME provider). Don't let the durable medical equipment (DME) provider tell you what you can have, know what your insurance will pay for and what you can afford and make certain the DME does what your doctor and you have decided what's best for your husband.
- Keep trying different masks to find one that is comfortable and works (some masks come with a 30 day warranty - find out if the one you get has a warranty (ask on the forum if you can't find the information or if your DME doesn't know). If you get a mask that has a warranty from your DME, make certain they dont' charge you for a mask you returned.
- Put the mask on every night even if it's not perfect
- Read the reports often
- Stay in contact with the forum to help understand the reports, how to find, adjust, or otherwise get a mask that works and is comfortable, and for any other issues that arise.

I may have forgotten a thing or two here, and others may have a different opinion. So your husband can decide what makes sense for him. I hope he will join the forum eventually. He will be very welcome!! You're welcome to stay too. Our spouses are a big part of this process. My husband was instrumental in my ongoing successful therapy.

Best wishes!

Hi,
The information that you sent is very helpful, we went to David's doctors appointment this morning. His doctor brought up David's sleep apnea, he looked at David and said " You desperately need help with this apnea problem that you have, What have you decided to do about it?" He went on to tell David just how serious the problem is. The doctor also told David that this is the first time ever that the doctor from the sleep study actually talked with him personally, regarding how bad David's condition actually is.
David looked at his doctor and said "you've got to be kidding?" No, the doctor was straight up with David today. His doctor said, let me get the respiratory with you, to set this up for you. So David agreed. Which I think is so fantastic. It's a prayer answered. We are both nervous, because we know nothing about this. But, we will deal with whatever we have too. I'm not sure what is next, except to wait for this phone call, I hope that this will be covered with his insurance, but I am going to go through the policy hand book tonight, it did cover the sleep study (80%).
I am so happy tonight, hard to explain. Anxious and nervous feeling.
Thank You so much,
Judy

gasp wrote:

frtwome wrote:Hi,
Thank you so much.
We do have a very comfortable chair that he naps in quite a lot. He goes into the bed at night & some during the daytime. But, he's really not sleeping then, he thinks that he does get some sleep, but I hear him snoring, gasping for air, talking, his arms & legs moving around everywhere. I go in a every few minutes, to try getting him turned over on his side. But he does get some real sleep in his chair. His doctors appointment is tomorrow, I just hope & pray that his doctor will help us out with this, so that we can start getting David some help.
I have unconditional love for David, I will always have. And I don't mean to be enabling David's disease, I would never do anything to hurt him, but I do understand what you & everyone is saying to me, I may be hurting him more, by trying to help him. I hope tomorrow evening, that I have some good news to say. We did talk to each other for a few minutes today, and David said to me that he is so tired of being tired & over weight. His comment was "I just don't know what I'm going to do"
I listened to everyone here and decided to keep my nagging mouth closed, as he continued talking to me. He said that he knows that he has to do something, The only thing that I said was, that I reminded him about his dotors appointment tomorrow, and he said that he is going to tell his doctor the same thing (he doesn't want to feel so awful any longer, he wants some help)
As he was looking at me when he was talking to me, it just breaks my heart to see him looking so sad and tired, his eyes all swollen with dark circles under them. I had to escape to the restroom with my tissue & visine.
Thank you all for you nice comments and great advice,
Judy

I'm so glad he talked to you and that you did the hard job of giving him the space in which to be able to talk to you. Good job!! I pray the appointment goes well. I think I can safely say that we all have had to face a bit of what he is facing. I can say for myself that when I knew I had to wear a mask every night I felt a bit sorry for myself. I didn't like going to the sleep labs or dealing with the whole thing in general. However, after more than 2 years of being 100% compliant (that means I wore my mask every night), I feel so much better that I would never go without my mask now. As you do, I understand how important it is to my health.

I'm assuming from the symptoms you've described that your husband will be prescribed a sleep study and after that a machine, mask, and other supplies such as hose. So, keep the following in mind as you go along in the process of him getting what he needs for the apnea. Also keep in mind that for some, it can take months from the first sleep study to get the prescription, machine, etc. I had a sleep study. It took several months for the doctor to interpret the study and issue another sleep study which is called the titration sleep study.

It's just one step at a time.
- Go to doctor
- Go to sleep study (stay overnight at a facility where they gently glue little sensors many places on the body so that they can tell how the body is reacting during the night
- Wait for doctor to interpret the sleep study and issue a prescription if the doctor thinks your husband has apnea
- The doctor will prescribe a second sleep study so that your husband can use a machine and mask allowing the sleep lab to determine what the right range of pressure is needed for his apnea.
- The doctor will then prescribe a machine. Get on the forum and ask if the machine prescribed is what others recommend you get. We'll all let you know what we think of it and how to handle the situation if it is not. Thanks to the forum I got a really good machine that is comfortable for breathing and I can read my own reports. Others here helped me learn how to do that and now I can tell when I'm getting good therapy. A family member of mine got a machine that didn't have a smart card and he was still tired. He had to go to another sleep study where they decided he had been at the wrong pressure (for a YEAR)! So, being able to read your own data keeps you healthier.
- FInd a good store to get your machine from. Your insurance will let you know which stores you can go to. The store for this type of product is called a "durable medical equipment provider (DME provider). Don't let the durable medical equipment (DME) provider tell you what you can have, know what your insurance will pay for and what you can afford and make certain the DME does what your doctor and you have decided what's best for your husband.
- Keep trying different masks to find one that is comfortable and works (some masks come with a 30 day warranty - find out if the one you get has a warranty (ask on the forum if you can't find the information or if your DME doesn't know). If you get a mask that has a warranty from your DME, make certain they dont' charge you for a mask you returned.
- Put the mask on every night even if it's not perfect
- Read the reports often
- Stay in contact with the forum to help understand the reports, how to find, adjust, or otherwise get a mask that works and is comfortable, and for any other issues that arise.

I may have forgotten a thing or two here, and others may have a different opinion. So your husband can decide what makes sense for him. I hope he will join the forum eventually. He will be very welcome!! You're welcome to stay too. Our spouses are a big part of this process. My husband was instrumental in my ongoing successful therapy.

Best wishes!

Good news Judy and David! I know that nervous and anxious feeling you're experiencing but now at least you're moving forward. Don't wait too long for the phone call from the DME, if you don't hear in a day or two make the call yourself to set things up. Thanks for the update and keep us posted. Dori

Thank You again,
Truthfully I was expecting a call today, because we were talking with the doctors assistant when she was faxing the information to the DME.
One thing David's doctor said to me is, When the DME is talking with us, do not let them talk you into anything different than what I have sent to them.
I'm sure that eventually I will learn what that means. I have read quite a few posts on here regarding the machines & etc. But, quite honestly it is confusing to me right now. But, I will do my homework as best I can.
I'm so ready to move forward, this is truly the best Christmas I have ever had in my life. And I Thank God for the helping hand. And all of you for helping me.
Judy

DoriC wrote:Good news Judy and David! I know that nervous and anxious feeling you're experiencing but now at least you're moving forward. Don't wait too long for the phone call from the DME, if you don't hear in a day or two make the call yourself to set things up. Thanks for the update and keep us posted. Dori

frtwome wrote:Thank You again,
Truthfully I was expecting a call today, because we were talking with the doctors assistant when she was faxing the information to the DME.
One thing David's doctor said to me is, When the DME is talking with us, do not let them talk you into anything different than what I have sent to them.
I'm sure that eventually I will learn what that means. I have read quite a few posts on here regarding the machines & etc. But, quite honestly it is confusing to me right now. But, I will do my homework as best I can.
I'm so ready to move forward, this is truly the best Christmas I have ever had in my life. And I Thank God for the helping hand. And all of you for helping me.
Judy

DoriC wrote:Good news Judy and David! I know that nervous and anxious feeling you're experiencing but now at least you're moving forward. Don't wait too long for the phone call from the DME, if you don't hear in a day or two make the call yourself to set things up. Thanks for the update and keep us posted. Dori

Judy

Terrific to hear that you are making such progress.

Hang in there

DSM