Doctors and nurses aren't a help so I came here.

[rested gal]

I got the info. On the top it said Lincare. Then she said it said C-Flex, feel the difference.

There was a heat button, on/off button, and a ramp button. She also said on the top it said Remstar Auto. She said nothing else was on the top of it.

Your mom did great, Kelce. That's exactly the info we need, to know exactly what machine he has.

He has a Respironics REMstar Auto with C-flex. The older pre-M model. A very, very good machine.

Kelce, please send me an email...to Lcatron AT earthlink DOT net.

I'll send you a PDF of the Provider manual for that machine.

Gerald and krousseau -- wonderful posts.

[mckooi]

hi kelse02,

you are lucky to find it here.....many will help you to understand...keep posting and you have great opinio and experience sharing....keep up the good work.

we are proud of you to take care of your father.
god bless.

mckooi

[ozij]

I suspect that his sub-conscious is getting rid of the mask at night....while it (his sub-conscious) is in charge.....and there won't be much you can do to convince his sub-conscious that the mask needs to stay on his head.

I disagree with the last part of that sentence - since you can approach his subconscious, and as a matter of fact, he has even hinted at how by complaining at the smell - smells are processed by the most primitive parts of our brains - and the subconscious responds to them.

Take a look at http://www.pur-sleep.com . Pur-sleep sells aromatic oils and a diffuser made to be placed just near the input filter of the cpap, and many of us have found that adding a pleasant smell like that helps them sleep through the night.

Re napping: if you dad naps at a place that is not his bed, and your family can afford it, you may also want to consider a second system, setup conveniently where he naps.

O.

[Julie]

I would be careful about suggesting something like Pur-Sleep if it's expected to be administered (added) by whichever nurse happens to be around on a given night - you know that half the time it won't happen at all, and probably the rest of the time too much will be added, maybe to the wrong place. I understand he misses the scent, but I wonder if even a tiny dab of menthol in some cream form, to his upper lip, for instance, wouldn't be a better idea.

[krousseau]

There isn't a lot of info on Binswangers-hasn't been for as long as it has had a name. It is however one of the vascular dementia. You already know it is related to strokes. So if it is early in the process controlling risk factors for stroke and heart attack is thought to slow down vascular dementias. Look up Multi Infarct Dementia online & see if that is any help. At least there should be some support groups.

Are you in an area with senior centers. Some have day care programs and respite programs. You need rest too. How good is your Mother's health? She might also be able to go to day care. The staff can be quite helpful in finding ways to deal with your Father's limitations. Always remember that the vascular dementias tend to progress in "steps" due to mini strokes causing sudden losses in function. What works today may not work tomorrow-it is frustrating.

Pur Sleep doesn't seem to make a menthol scented product. You could provide that scent by smearing some menthol rub on a piece of paper towel on a dish beside the air intake of the CPAP.

[Wulfman]

Here is a text list of the instructions for navigating the "setup" of that machine.
As mentioned in the instructions, to enter the setup, you unplug the machine and then hold both of the two grey user buttons (under the LED screen) down as you plug in the machine (about 5 seconds until it beeps twice).
It would be extremely helpful if you could talk your mother through the processs of getting into the setup and then write down all of the existing settings on paper. Once into the setup, by pressing only the Right (grey) user button, one can navigate through the option screens without changing anything. Then to exit, one would press the On/Off button.

Den



REMstar Auto w/C-Flex Setup

When in the Setup Menu, the humidifier ^ and ramp v buttons operate as up and down keys to change the settings, the left/right user buttons < > allow you to go to the previous/next question or setting, and the pressure start/stop button is used to exit the Setup Menu. Holding the humidifier or ramp buttons down will cause the values to change more quickly.

To enter the Therapy Setup Menu, hold the two top user buttons < > down while plugging in the power cord.
Continue holding the buttons down until the REMstar Auto w/C-Flex beeps twice.

Note: The word "setup" will appear on all of the screens indicating that you are in the Therapy Setup Menu.
(If you press the Pressure start/stop button, you will exit the Setup Menu.)

A. Compliance hours/nights: (recommend leaving alone, but CAN be cleared at this point)
Select next setting with >

B. Therapy mode: (CPAP/CFLE/APAP/AFLE) select with ^ or v
Select next setting with >

B1. If CPAP or CFLE select pressure setting: Select with ^ or v
Select next setting with >

B1a. C-Flex mode (if you chose CFLE mode): Select setting 1, 2 or 3 with ^
Select next setting with >

B2. If APAP or AFLE, select minimum pressure setting: Select with ^ or v
Select next setting with >

B2a. If APAP or AFLE, select maximum pressure setting: Select with ^ or v
Select next setting with >

B2b. C-Flex mode (if you chose AFLE mode): Select setting 1, 2 or 3 with ^
Select next setting with >

C: Ramp time setting: Select with ^ or v
(ramp time will be turned off with a setting of 0:00)
(if using APAP or AFLE mode, Ramp setting MUST be set to 0:00)
Select next setting with >

D. Ramp pressure setting: Select with ^ or v (use only in CPAP or CFLE mode)
Select next setting with >

E. Patient disconnect setting: 1 = on 0 = off Select with ^ or v
Select next setting with >

F. Buttons lights setting: 1 = on 0 = off Select with ^ or v

(Last setting. Use On/Off button to exit Setup)

[Kelce02]

Thanks to everyone! I read all the info and will pass it on to my mom. Last night my mom said he did horribly with the mask. Worse than the previous night. She said that she thinks it's complicated more now because she feels he's getting a cold.

My father does have other health problems which can be attributed to the CO2 poisoning. He has end stage renal failure.They actually doubled up on his dialysis to help get rid of the CO2 faster.Obviously he has problems coming at him from every angle. He still has strength in his voice and a will to live so I will do everything in my power for him.

His dementia hasn't taken a huge step yet. He's mostly the same but he can't seem to use computers as well. That's all the change he's noticed thankfully. We thought he had taken a huge step for the worse but it turns out it was mostly the CO2 building in his system since he is a lot better since getting it all cleared out.

I will call about homecare on monday. He lives in a small town. About 1 hour from a moderate sized city. It's hard to get anything done on the weekends because everything shuts down around them.

Rested gal. It's good to know that he has a good machine. I will send you an email when I get home today to get the product manual. I had to hijack a computer to see the responses for today. I should get home this evening.

Thank you so much wulfman. I will read off those things to my mother. I think it's the pressure they need to change. She might already know how to do it because she said something like "she turned it down for him" last night.

In the hospital he had a full face mask. Do you know if that kind of mask can be used with this machine. He seemed to do better with it. My mother also called to see if he can have oxygen prescribed to him. I think she figures if he doesn't wear the mask than something is better than nothing. She is doing her best. They're actually separated so God bless her for all her hard work. She's not in the best of shape so I'm trying to find any ways to make this easier on her.

[cflame1]

In the hospital he had a full face mask. Do you know if that kind of mask can be used with this machine. He seemed to do better with it. My mother also called to see if he can have oxygen prescribed to him. I think she figures if he doesn't wear the mask than something is better than nothing. She is doing her best. They're actually separated so God bless her for all her hard work. She's not in the best of shape so I'm trying to find any ways to make this easier on her.

Yes, he can use a full face mask with this machine.

[Moby]

How long has your dad been on dialysis?
Is he on haemodialysis (blood) or peritoneal (tube in tummy)

Thanks

Di

[Kelce02]

Ok cool I'll look into getting a full mask for him.

He's been on hemodialysis since 2003.

[SleepGuy]

Kelce02, I would be happy to donate a PurSleep kit for your father. I think it might do him some good--especially since he seems to be looking for something pleasant to smell (menthol). The Clear essential oil blend (PurSleep) is made from very high menthol-content peppermint essential oil, with a little lime and lavender to take the harsh edge off of the peppermint. The PurSleep system lightly scents the air as it's being drawn into the equipment; aromatics do not touch the equipment (as discussed above, this is not a good idea). Clear in particular is an outstanding aromatic to use in conjunction with CPAP equipment and has reportedly helped others with "mask off" situations (in particular a guy named Nodzy from the forum here). I can't send you a PM since you're not registered so this will have to do. If you're interested, please feel free to send me an email (address below in my signature). Here's a link to one of Nodzy's threads on the subject:

viewtopic.php?t=23165

It's a long thread--this post kind of sums up his experience:

I probably rank on the upper end of the of OSA damage scale due to having been a misdiagnosed and untreated SDB victim for many decades. Then I was an improperly prescribed-for SDB sufferer for years. Achieving good sleep routinely without medications is something I never thought possible.

Switching to APAP and a Hybrid FF mask, in June and July respectively, surely helped me. But my sleep was still interrupted many times a night by waking periods. Episodes of pulling the mask off in my sleep were still almost a nightly occurrence, and often multiple times each night.

What Pur-Sleep added to my therapy was another dimension, one of peace, comfort and encouragement of restful sleep. My mask-off episodes are currently diminished by over 95%. The number of continuous hours of restful sleep I get each night vastly improved.

I may never have perfect sleep, but now the severity of OSA hangover that I suffered daily for decades has been measurably lessened each day.

I am not healed, still have considerable pain, some headaches, head-fog and other symptoms… but most are diminished enough that I don’t wake daily teary-eyed with very blurry vision, a drunk-like staggering gait and a head that begs for decapitation. I don’t nod multiple times during each day without warning, or almost every time I sit quietly for a few minutes.

The value of Pur-Sleep to me is beyond its modest cost. It is as important in my therapy as are the machine, hose, mask and proper pressure settings.

Banking any of this quality sleep isn't possible, but my body is certainly enjoying the nightly payments nonetheless.

SG

[lifeartist59]

I just wanted to send my best to the poster who's father has dementia. My father had multi-infarct dementia and I know how hard it is for the family to deal with this. I tried to take care of my dad after my mom passed away, and did eventually end up ( with my sister) placing him in a home. It was the hardest thing I have ever done. I am not familiar with your fathers disease, but my guess is the symptoms are similar. My thoughts are with your family, please do remember to make sure your mom is taking care of herself too. I hope you can get your dad help with his cpap and mask too!

[Moby]

Hi Kelce,

I commend you on your caring in such a practical fashion for your Dad and you Mum too. My mum and her brother died young of cancer, and the family nursed them at home. It is rewarding, but very exhausting and demanding.
I am sure your Mum is very appreciative of your support, especially as you are some distance away and it would be so easy for a less caring person to turn their back. Practical support is the best help and you are in the best place here to access what you need.


I hope the time is appropriate for me to bring up some of the following issues. If not, ignore them and please accept my apologies for being too forward.

It seems to me (and I may be wrong, I'm not trying to judge or persuade, no agenda here) that the respiratory treatment options are more effectively discussed in the context of the other treatments your Dad is getting.

The rest of this post is mostly about haemo, so skip it if it doesn't seem relevant at the moment.



As you know, the kidneys and the lungs are the two organs which regulate the blood ph. When the ph is out of balance, nothing works right in the body.


Is your Dad tolerant of the haemo regime?

How many hours a week of haemo is he getting, and are the clearance rates (ie removal of toxins) adequate?


If he is getting inadequate dialysis then that of course will contribute to any confusion because toxins are not being cleared from the blood.

If he wanted only palliative care, (which I understand is not his choice at present) an inadequate clearance wouldn't matter so much provided as he is comfortable, but as he is still eager to live life as well as he can then he needs good clearance rates and sufficient hours on the machine.


The more aggressive and effective the haemo is, the worse it can make you feel overall, because the body uses energy to shift the toxins out of the cells into the blood for removal. Haemo patients look like they are doing nothing for 4 hours, but they are using as much energy as if they are vigorously exercising. They do get very tired, and it gets worse as they age.

Does he have many complications on dialysis, cramps and so on?

Does he find it very hard to keep to the dietary/fluid restrictions? (I know I couldn't do it very well).




As and add on to Gerald's post, I would like to ask as gently as possible whether you, your mum and your Dad or family with your Dad have ever discussed the difficult topic of when/whether to withdraw from haemo?

I know it is difficult to bring up and discuss with him just what he wants while he is still getting over being so acutely unwell. I am trying to think through your options and trying to get a fuller picture.

Other questions

Does he have other things wrong with him - peripheral artery disease, diabetes...?

Are the sleep/pulmonary team happy for him to continue with CPAP at home, or would they prefer BiPap - if he could tolerate the mask either way of course.

Have the pulmonary/renal teams met to discuss his treatment?




regards

Di (Dialysis RN - but not a senior one!)

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, CPAP

[Kelce02]

I will look into getting the pur-sleep stuff for him if he can get back on track in the next day or so. He's starting to slide from not wearing the mask. He just can't get used to it.

My mother ordered a full face mask for him and will ask for oxygen on monday. If something doesn't change soon we'll put him in a rehab home. And by soon I mean this week. It's crazy how quickly he's slid downhill without getting proper oxygenation.

My dad is really tolerant to his dialysis regime. While he was in the hospital he was overly concerned about getting his dialysis. He wanted to make sure he got it done so basically he welcomes it.

He gets 4 hours of dialysis 3 days a week I honestly don't know his clearance rates. I kept up with it more at the beginning of his dialysis treatments but like I said he's been on it since 2003 so it's just become second nature.

He used to get cramps in the beginning but not anymore. His biggest side effect is sleepiness. He keeps to his restrictions well except I noticed he faltered quite a bit right before going into the hospital. He was drinking constantly because he was coughing so much. I know he wanted water but I had to convince him to slow down.

We've never talked about discontinuing dialysis. My dad spoke of other patients doing it but he didn't voice opinion.

No he doesn't really have anything else going on other than what I've already listed. Binswanger's Disease, end stage renal failure, and sleep apnea. THe first 2 do cause severe hypertension but when he was in the hospital somehow they had it controlled well. It's been fairly unctonrollable for about 2 years now.

He was given the cpap in 2005 I believe. He kinda discontinued his relationship with the team when he decided not to wear the mask so the team doesn't keep up with him until now. Like I said my mom called him and ask for the mask. They are going to try and get it to him as soon as possible. They've made no mention of switching to bipap.

I don't think the two teams have really put much thought into it. I've always gotten the feeling that he's been treated by separate entities, never really a team.

It's sad. I don't have much faith and trust in doctors or nurses even though I'm trying to become a nurse. When we were all younger my family felt that hospital negligence is what resulted in my grandmother's death. We tried to tell them that something was wrong, they ignored us and she died that day. It goes deeper than that. I feel like it's happening again(though not so blantantly).

[Moby]

Thank you Kelce. I am glad you don't mind me asking questions. It is encouraging to hear that he is so positive about his dialysis.

I am sorry you have had such poor experiences with doctors and nurses in the past. I hope you find some in the dialysis unit that you can trust and form a good relationship with.

Probably everything is going well with his dialysis, but it is always good to know rather than assume. And good nurses will always welcome relatives who are interested in maximising their loved ones treatments. Sometimes we are too busy to stop to talk long "at the drop of a hat" , but it should definitely be possible to make an appoinment to discuss his treatment with a senior nurse/doctor. Someone should be checking his treatment regularly and making regular decisions about his dialysis prescription, and that person/persons should be able to explain to you what his prescription is and why that is the best one for him.

This looks like a good page to get started on for info if you have the time.

http://www.aakp.org/brochures/hemo-advisory/


In my unit we so basic blood tests every month and check clearance rates every three months. We look for trends to see whether things are getting better or worse and try to work out what we can do to keep things going as well as possible or to improve on what we've got. People change all the time, what works one half year may not work the next. It's not a question of setting a prescription in the first few months and then never changing it.

Good luck

Di