1)Mother Is Suffering 2)Supplemental Oxygen for Sleep Apnea?

When I visited the assisted living facility yesterday morning, mother's roommate told me that mom had a bad night last night. The facility is a 90-minute drive from my home and I usually only see mom in the late morning through lunch about once per week. Two weeks ago I had the rare chance to observe her taking an after-lunch nap. Knowing the pain from my own experience, it was very difficult to watch her struggle to breathe. This is grinding her down and the dementia continues to progress. She is so weak that she is beggining to depend on the wheelchair to get around in the facility. Mom is 87. She has no known health problems besides sleep apnea and dementia.

Here is part of a letter I am getting ready to mail to her physician.

I am xxx’s son and caretaker. Recently I observed mother napping on her bed for a few minutes. While asleep she was snoring heavily, her breathing stopped frequently, and when she did breathe she was struggling to get enough air. Being a sleep apnea patient and CPAP user myself, what I observed leads me to believe mother has severe obstructive sleep apnea. In fact, we believe she has had it for decades.

You and I discussed once that mother would be very unlikely to tolerate CPAP and I believe that is even more unlikely now as her dementia is slowly progressing. I have been advised by several friends with elderly parents who have sleep apnea, that supplemental oxygen when sleeping has been prescribed for their parents. It was also stated that their parents were diagnosed in rest home settings using portable monitoring equipment and overnight stays in sleep clinics were not necessary.

Please proceed with the testing if you think supplemental oxygen may be appropriate treatment for my mother.

Any advice will be appreciated. As you can imagine, my brother and I feel somewhat helpless to watch her die painfully over a long period of time.


Thanks,

Rooster

No advice, only sympathy for what your mother is going through and for you, for having to watch. She is lucky to have two sons who are there for her. Your letter seems very reasonable, and I hope it gives her some effective treatment.

Alan

It a very sensible letter Rooster.
It is very sad and difficult to see our parents age - more so, I believe, when part of their aging is loss of mental capacity.

In the end, we are all helpless against death it comes to us all, no matter what. I believe that for there comes a point when our main concern for our aging parents should be how comfortable they feel. I don't know you mom's doctor, and of course, I am not you, but if it were me writing this letter I would mention that I believe this choking I witnessed must be very frightening and unpleasant for her, and that I wonder if additional oxygen would not make the air she does get into her lungs more beneficial (I have a feeling this is not quite the right word in English, but I'm sure you know what I mean). What I'm trying to say is that I would emphasize comfort and symptom relief more that anything else in my letter. I don't know how the system works - but is diagnosing sleep apnea at all necessary in order for them to prescribe oxygen? (Isn't a simple pulse ox test enough for that?). I would probably end my letter with something like this: "Please try to give her supplemental oxygen if there is the slimmest chance at all that it will make the times she sleeps easier for her".

It is a sad truth my friend Rooster, that you mother is past being treated. She has to be made as comfortable as humanly possible.
I feel that by using the term treatment, you may be reminding the doctor of that which he cannot do -- make her better. By focusing on her comfort, you and he will be discussing something you can agree upon -- and something he can be instrumental in providing your mother.

Ensuring your mother's comfort is something your brother and yourself can focus on too - you are helpless against her dementia, and her coming death - but anything you can do improve the quality of her life at present, be it simple physical comfort, is worth doing. You are not helpless in that.

O. - who is watching her dad growing more demented daily...

I disagree that you need to accept her being past being able to be treated. She may well have new cardiac issues, may need new meds or to be taken off others. She may need testing, or not, but it's vital that you find her a doctor somehow, whether it means taking her on your own to a centre, or whatever. She should absolutely not have to accept that kind of (overnight) life, and the daytime consequences of it.

Rooster,

I'm sorry I can't offer any advice, as I'm lucky to have not had to deal with these issues (yet). Just wanted to voice my support and empathy for you and your brother, and to commend you both for taking as active a role as possible in assisting and looking out for your mom in her deteriorating condition. Best wishes to all of you.

Sounds good to me... I think that my dad was on oxygen at the end... not sure because I didn't spend time there... said my good byes in person before hospice.

Rooster, in recent years our family had to deal with what was appropriate treatment for my mother in the nursing home. I had to speak with her doctor because I would not accept that because she was not curable that unnecessary suffering should be allowed in those last months that turned into years.

I know someone who couldn't adjust to cpap, but used oxygen as their next best option. Monitoring showed their levels to be improved as well as their general health and well being. It may not be an end all, but you are right, it could make your mother suffer less.

Hope her doctor is both receptive and responsive to your concerns. Let us know. Best wishes.

Kathy

Rooster - You are doing the right thing trying to a least get oxygen supplementation for your mother. I don't know that she could tolerate cpap therapy.

I know that, while my mother did not have sleep apnea, she certainly had dementia. It is so difficult watching the last months and sometimes years, as in my mother's case, in the life of a person who raised you and now doesn't even know who you are.

Just do anything you can to make sure that she is as comfortable as possible for as long as she has.

Rooster, you might also ask that the supports on the "head" end of her bed be raised 4-6 inches as that might be helpful for her breathing; it is for mine and has been for yrs, even before CPAP.

Thanks to everyone who posted and for all the PMs.

O., I did edit the letter to include the wording you suggested.

Kathy, Thanks for the comments on your mother and the other person. It's always good to hear someone who has experience with what you are dealing with.

The doctor received the letter today and we had the email below when we came home tonight. I will post it because some of you may be interested in how he interprets the Medicare rules.

I received your letter today. It sounds as if xxxxxx may indeed have sleep apnea. If she is desaturating at night, supplemental oxygen may prove helpful. However, those people who administer Medicare will not pay for supplemental oxygen without documented desaturations. Therefore, I have asked the staff to do pulse oximetry twice nightly while xxxxxx is sleeping for 1 wk in hopes of documenting a desturation. If one can be documented, I will order the supplemental oxygen. If we get no pulse oximetry readings low enough to meet Medicare’s criteria for supplemental oxygen, I will look into the possibility of continuous nocturnal oximetry to see if we can document a hypoxic episode severe enough to meet their criteria for supplemental oxygen.

xxxxxxxxxx, MD

That's a great response, rooster. Sounds like the doc is very much in agreement and is willing to work on getting your mom some respiratory assistance. I trust his response makes you feel better about the situation.

Rooster, that response was a good one and gives me hope that your mom will get some help. Two weeks ago, I took my 88 yr.old MIL to her doctor because she was having so much trouble breathing. We thought it was due to osteoporosis. Her oxygen sat was 95, so after some more checking, the doctor determined that the problem was severe heart fibrillation. Then he told us that medicare wouldn't approve the oxygen because of the saturation, but that he would order it anyway in the hopes that the heart problem would qualify her. We'll see. I realize that you are in a difficult situation. Hopefully, we'll get a good report from you soon.

I feel your pain Rooster... even though I have no specific advice.

My own mom is 81 and still very active. The most serious health issue is diabetes which has affected her kidney function. Doc has told her to be ready for dialysis at some point (this was at least a year ago) and she had the arm surgery to get ready for that. In recent weeks they have said her kidney function seems to have stabilized.

You are doing the right thing by reporting your observations and taking an active role.

It does sound like the doctor will do his best - within the regulation he has to follow - to to give your mother oxygen. I hope it will happen soon, that she will tolerate it, and that it will make things better for her.
Thank your for the update.

O.

Paul56 wrote:I...most serious health issue is diabetes which has affected her kidney function...

My dearest friend is legally-blind from diabetic retinopathy and another is on dialysis and the kidney transplant list (having triple bypass next month too ). The first has had diabetes for 20 years and the latter has been on insulin for 30 yrs -- neither paid much attention to what they ate other than avoiding desserts. The former even followed the ADA diets...shows how much they know about reversing the course of diabetes.

Diabetes causes vitamin B1 (thiamin) to be pee'd away. The workaround is to supplement with benfotiamine, which is an allothiamin derived from shallots and leeks amongst others (ya can't eat enough to be helpful). Benfotiamine shuts down one of the major pathways that produces the pathobiology of diabetes. Many diabetics take it for retinopathy, neuropathy, and kidney problems. Worth investigating.

Here's a link to the article I read (gotta remember your college organic chem ):
http://diabetes.diabetesjournals.org/co ... type=HWCIT