I am in a quandry.

I guess I am still fearing the unknown and need a little advice.

As some of you might be aware of BFM is on hospice care. They are wonderful and the nurse are really quick to answer my questions or give me any assistance that I need.

BFM has been having a lot of trouble with her swallowing on a more regular basis. Since she doesn't communicate any longer I pretty much have to guess what is going on with her.

The past few days I have noticed when I get her to drink or eat something she has been burping right after she swallows (more with fluids than with food).

Is this a sign that she is asperating a little bit of what ever she is swallowing?

How will I know if she is asperating and even more important what will I do if she does?

I think she senses my worry during meal times. I am just scared to death that she will asperate and I wont know how to handle it and that makes her have even more difficulties swallowing.

She gets stressed (can see it on her face and in her body language) every time I remind her to swallow. So I know it's making her mad that I keep reminding her, but If I let her do it without reminding she will hold what ever in her mouth for ever and forget what she is doing. It already takes me almost 2 hours to get her to eat a bowl of oatmeal and drink 12 oz of juice / water. Trying to keep her concentration that long is a real chore in it's self.

HELP!!!!!!!!!!

I am open to any suggestions or advice..

I don't know if burping is a sign of aspiration or not.

When my mom swallowed "wrong" she would always start "gurgling" in the back of her throat and then she would try to cough. I, too, continually reminded her to swallow -- fortunately she didn't take any offense. Guess she knew she was having trouble.

Usually a cough reflex is a good sign of having swllowed wrong -- it irritates our airways and we try to remove the irritation. So, in that regard, we all aspirate on occasion. The problem comes when it gets past the initial airway and goes into the lungs. When that happens, people can develop what is known as "aspiration pneumonia."

Tfhe nurse will/should be able to hear if there is congestion in her lungs. Since she is having these swallowing difficulties, I would want the nurse to listen to her lungs each time she came.

As for what else you can do.......may I suggest feeding her smaller amounts? Give her 1/2 of what you are giving now, and follow up with frequent "snacks" rather than trying to get a complete meal in her at one time. Like you said, 2 hours is a long time to keep anyone's attention, much less someone compromised.

Also, is there something she chokes on more frequently or has difficulty swallowing? Texture seems to play a very big role in the difficulty swallowing process. There is a product called "THICK-IT" that you can add to most foods or liquids until you get the consistency you desire. It is available at most drug stores. Hospice supplied it for my mom.

I also switched mom to #2 baby foods. There is a wide variety available, including desserts, and with seasoning, they aren't too awful. I would heat them in the microwave, season them, then thicken them a little. That consistency seemed to work best for her.

Good luck in your ongoing struggle. As with everything else, keep trying til you find something that works.

Karenlee,

Thank you for the response. The nurses do listen to her lungs every time they come, so that is a little comfort.

I do puree every thing she eats. I still remind her to chew even though in reality she doesn't really have to chew most things, guess it's more for my comfort than hers, just in case I didn't get everything mashed up well enough.

The hopsice did give me some thick it for her, and I have used it a few times. I know texture must be a big deal for her because I have not had any luck getting things to the right consitancy for her.

I have tried to break her meals into many little small ones and it is even worse than trying to get her to eat all of one meal.

Before this dreadful disease took over completely she never ate between meals or had snacks. She was a 3 meals a day person and that was it. She ate what she wanted in those 3 meals. Guess that is not going to change. I can't even get her to open her mouth for a peice of choc. candy if it is not during a regular meal time. She is now down to 2 meals (small ones) per day (I have given up on lunch it just isn't going to happen).

I don't know what is going on with her today.. but her antianxiety meds don't seem to be working..

I have no clue if she is in pain or if she is upset I just know that she is agitated, she wont eat anything or drink anything and she isn't wet or dirty.. uggg I just don't know..

Burping is usually a sign that she is swallowing her liquids with air. If she was aspirating then you would hear her cough after this happens. She also may have gastric esophageal reflux disease (GERD), which is common with people taking many medications and also lying down for prolonged periods of time. Try keeping her sitting up after her meals, this should help her digest her food. Listening to the lungs everyday is definitely a good idea because she may be aspirating saliva at night, and this makes her more susceptible to pneumonia. Lastly I would ask for an MD consult to make sure this is truly the case, and that she isn't aspirating any food. If so, they may want to put her on a nasogastric feeding tube, or a percutaneous endoscopic gastrostomy tube (PEG tube), although that most likely won't happen at this stage if she can still swallow properly.

Aitan,
Thanks for the info.

I always make sure that BFM sits up at least 30 minutes after a meal just to let some of her food digest an djust in case she has cheeked something, Usually she can't hold it in her cheek that long and it will give me a chance to watch her.

BFM is very stubborn and even though she has NO capabilities left she still tries to maintain some control so things like reminding her to chew or to swallow really upsets her.

She really doesn't take any meds tht would be causing acid reflux. The only thing she takes is .25 mg of Xanax in the AM and 5/325 of Norco (for pain) in the Am on bath days (Mon. and Wed.), then .25 mg of Xanax in the pm and 5/325 mg of Norco in the pm is she acts like she is in pain.

I used to make sure that the Xanax and or Norco was in her first bite of food every time, since I wasn't sure if she was going to eat more than 2 or 3 spoon fulls, but I noticed that it seemed like the meds would take effect and then she really struggled more with her swallowing and concentration so the last couple of days I have been waiting to add it. I don't know if it has helped with her swallowing issues but I can tell that she doesn't zone out before she is finished eating.

The nurse is going to come early today so that she can watch BFM eat her breakfast. maybe she will be able to tell what is going on with her when she is swallowing.. (of course knowing BFM she wont have any problems and she will eat every bite.. LOL)

I was wondering what can I do or is ther eanything I can do if she does asperate food (or fluids), she can cough but I don't think she can cough anything up (so to speak).

As far as the peg tube. She is so far along in this disease that we wont put one in. Her PCP and I talked about it at great lengths when she wasn't as far along and I was having trouble getting her to eat even though she was swallowing ok.. she would forget she was hungry. I hit him with If this was your Mom what would you do? And he was very honest with me about it. So we weighed the good and the bad and decided to hold off (that was last year) sure enough she was having on goig UTI / bacteria problems once we got them cleared up and in control she started eating again.

The burping thing I gues could be air going down first. I didnt' think of that.

Thanks again for your reply.