My mother is bamboozled by her "very nice" DME.

[bailachel]

advance warning - this post contains venting.

My mother who is a very bright woman in other respects, just isn't interested and doesn't know/care enough to question what her DME tells her.

The supervisor from her DME visited her today to bring her the reports from the data card she sent in because they have failed to send them to her despite repeated requests. She is now very happy because he is a very nice man and he told her that her therapy is working "perfectly". According to him, she has 0 apneas, 0 leaks, 0 everything! Isn't that amazing? and he can tell all of this from the compliance reports generated by the PR1 Plus. ???!? Really??? perfect data the whole time she has been on CPAP? (several months now) Really??? I dumped her data last time I was there and got reports that don't look perfect to me. In general her therapy hours per day are 1/2 to 2/3 of her blower hours. Her nice green bars showing daily hours of usage have large black sections. Perfect? Really??? I sent her these reports and she got them, but didn't discuss them with him. She is coming north in a couple of weeks and I asked her to bring the perfect reports. She hesitated but said she would. I have a feeling she will forget or he didn't leave them with her.

He also explained that she doesn't need a copy of her prescription because if she has a problem out of the country, medicare won't pay for it anyway and if she has a problem in the country, she can just call him. (translated by me to mean "don't buy anything anywhere else"). She isn't worried about problems while traveling out of the country this summer because she says her apnea is mild and if she has a problem, she'll just skip the therapy till she gets home. Great. this is a woman who has COPD, has high blood pressure, and has already had one stroke. Great. Just great.

At my instigation, she asked him about switching her machine to a PR1 Auto so she could get data, but again, he convinced her that she doesn't need it. He told her that since her therapy is working perfectly, she doesn't need that machine because it will fluctuate the pressure. Apparently he ignored the fact that it can run in CPAP mode and that she wanted the data. Unfortuately, he has now convinced her that she doesn't need the data.

ARGGHHH!!!!

[Muse-Inc]

OMG...and how's your BP? High I bet....so challenging when discussing CPAP therapy with otherwise intelligent people who suddenly seem to have taken a few sips of stupid & lost their intelligence. You have my sympathy. Got my mom to take a Proline+Lysine combo that has grape seed extract which cuts her appetite but the real reason was to dissolve some carotid artery blockages...taken about a yr but the blockages are now gone and she's now become averse to taking the supp every day...I could just scream. Again: you have my sympathy...am there now, not fun

[Wulfman]

Isn't that just GREAT?????? Another happy customer.........who's been kept in the dark. (mushroom syndrome)

You have my sympathies.


Den

[Popi]

I know a little of what you're going through...kinda.

I had no idea of how the process worked when I first went in for a sleep study. I guess that these folks have been doing this for so long, that they sometimes forget that the testing and subsequent equipment issue is totally foreign to the layman.

I went in for my study thinking that afterwards they would tell me what, if anything, was wrong and I would go from there. Who knew that there would be two studies, one without a mask, and one with. So, two studies down, and I finally get with the Doc for my diagnosis and treatment options. Dental appliances...nah, they don't work; surgery...nah, 50/50 chance, not worth the risk; but, whoa buddy, CPAP is the way to go. OK, I say, we'll go that route. The whole time, I was thinking that if there is something important that I need to know, the Doc will tell me...he IS a professional after all.

Go to what I now know to be my DME and receive my CPAP, mask (a full face mask created by the Devil) and about five minutes of instruction. After about a week of not sleeping, I put the whole damn thing in the closet, and go back to snoring and not breathing.

Then I found the forums.

Who knew that machines can keep track of your progress? But then, who knew that you had to use computer kung-fu to get into the clinician menus to see them? Who knew that you can try different masks? From different companies? And that insurance took care of most of that? OMG, I didn't even know what I didn't know.

DME's are a business, and as a business, their FIRST priority is profit, their second priority is themselves (the bosses), and after they take care of their employees they might start to give a damn about their customers.

I am sorry for your mother...she has fallen prey to what seems like a very skilled salesman. Like me, she really needs to educate herself, and like me, she needs to take her health seriously.

[brazospearl]

Bailachel, bless y'all's hearts. It's so difficult when you're watching your parents make mistakes, especially when you know someone's taking advantage of them. While I think it's wonderful that her DME can ease people's minds about their medical issues--which can be tough, I'm sure as they see lots of folks in very difficult situations, it's worrisome when you realize they're not being exactly straightforward. Do you have documentation showing that her medical professionals can discuss her situation with you? It's probably time to get something like that in place. Just sayin'. Good luck.

[djr1215]

Maybe we need to set up cpaptalk rescue teams - tell us where and somebody is bound be be near enough to put on our super cpap cape and go help your friends and relatives muddle through the cpap swamp!

[Pad A Cheek]

Maybe a CPAP users intervention group should be formed. All of our loved ones who either refuse to use CPAP if they need it, or are not getting decent therapy if they are using their CPAP. Also we could add interrogation with the DME in question. Perhaps a new Reality TV show that would actually help someone live longer.

Just dreaming.

Karen

[Janknitz]

Any chance your mom will sign a HIPAA release and let YOU talk to the DME? Then you could ask for her reports and make sure that the DME knows (in a polite way) that while your mom may be naive and not understand her therapy, you do.

[rested gal]

Any chance your mom will sign a HIPAA release and let YOU talk to the DME?

I like that!

What interesting posts, bailachel and Popi.

bailachel, I can only imagine how frustrating it is to hear what the "nice man" from the DME has been telling your mother -- knowing what you know. As Muse_INC said, "OMG...and how's your BP?"

Hope your mother eventually lets you help her. You could sure handle her therapy much better than "the nice man" does.

[Roman Hokie]

Take it one step further. Type up a nice HIPAA release form letter (with different Doctor's names on it) naming you as one to whom medical information may be disclosed. Get it all ready and have Mom sign and date each one.

Might work.

And yes, it does have to be done for each medical / dental / psych / etc provider. There is, sadly, no "one size fits all".

[Janknitz]

Maybe a CPAP users intervention group should be formed. All of our loved ones who either refuse to use CPAP if they need it, or are not getting decent therapy if they are using their CPAP. Also we could add interrogation with the DME in question. Perhaps a new Reality TV show that would actually help someone live longer.

Here's my dream--"CPAP buddies". When someone is diagnosed with SA and needs to go on a machine, that person would be matched with a buddy would would walk them through the process of getting a machine, mask fitting, and surviving the first nights and weeks. Ideally, it would be a buddy in the same geographical location who knows the DME's, sleep labs, and docs well enough to be a good advocate for the newly diagnosed individual. I bet this would increase compliance more than any other thing that has been tried so far.

There will always be people who want to just blindly follow the professionals' orders, put their mask and machine on, and get on with their lives. This would permit them to do it effectively and to be successful rather than getting frustrated and throwing the machine in a closet.

I bet the DME's would HATE it, and the doctors/sleep labs would be a mixed bag. But I think that one on one contact would be very good for the patients. Meanwhile, at least we have forums like this.

[bailachel]

Thanks for the support and the suggestions.

I think that I might try the HIPPA idea. I just have to figure out how to approach her about it gracefully.

I like the intervention group and buddy ideas!

[Janknitz]

Appeal to her shopping instinct. Tell her she could get much nicer stuff for no extra money.

[DoriC]

Bail, I'll never think of the word "perfect" in the same way again! You mention that your Mom does some traveling so I assume she's a pretty active lady and might be somewhat interested in technology too. Does she have a computer(I guess not or you would probably have mentioned it) or would she make use of her library's internet services so she'd have access to cpaptalk? BTW, I just signed a directive which was put into my medical file, giving permission for my son and daughter to ask questions regarding my medical history even if I am still capable. I wanted to be sure that if I was confused about any details of a medical diagnosis or treatment plan, my kids could ask their own questions of the doctors. Of course, when I mentioned this to a friend she didn't take kindly to my suggestion and would "never" want her kids to know her "private business"! It ain't easy!

[Kevin G.]

Rather than doing an intervention just call up her physician. Call him up and share your concerns and suggest that he might want to review her treatment. Ask that he not mention your name to your mother. Don't expect the physician to share any information with you since he may be legally constrained but if he is interested and willing to get involved he will have a lot more leverage than you will ever have.

There is one issue that I have not heard mentioned and that is your mother's control over her life. I am a strong believer that Unless she is mentally incompacitated that it is her life and that she has a right to make he own decisions right or wrong.