My father has had a feeding tube directly into his stomach per doctors care for a few months. He had a swallow test but did not pass. No oral food or water due to non ability to swallow. My fathers entire mouth is dried out even with the moistened mouth swabs. Is there anything that can be done to provide moisture in mouth and throat? His doctor/nurses say no. His entire mouth is dried out and he no longer is talking.
After some searching, I've found organic lip balms, one of which lasts 4 -5 hours, depending on the humidity in the house. One was purchased through an herbal supplier and was the best I've ever used. The beeswax makes it quite smooth and comfortable. The other is by EOS, not as much beeswax and not as tasty, but it does work.
I can't speak to biotene gel; I even had to google it as I'm not familiar with it.
Mydadcare, is your father getting any meds to decrease or cut through phlegm? I wouldn't think so since he's apparently NPO.
I ask b/c my father was prescribed scopalomine in conjunction with his dysphagia, and I noticed that his thirst level spiked after the patch was applied below his ear. If I recall my research correctly, that could have been one of the side effects.
I was opposed to it at first, and reluctantly agreed to continue it b/c it did think the secretions, but it also made him thirsty, and decreased his appetite.
Is he allowed to "swish and spit" at all?
I think I'd be inclined to go beyond the nurse and ask the doctor or DON directly. I got better answers when I did that before the scopalomine was administered.
What you might try to clarify is whether or not he can drink thickened liquids, little sips at a time, or if he's completely NPO.
The other issue, and I don't wish to frighten you, is one raised by a speech pathologist and speech therapists: whether the deprivation of food, of oral stimulation, the chronic dryness of lips and mouth, were worth it to extend his life, or if he wanted to just eat pureed foods with the recognition that there would be aspiration pneumonia.
I feel your pain; this is a difficult situation in which to find oneself. I think dysphagia isn't addressed enough in co-morbidity issues, but it's a serious situation. If I ever reach that point, I think I'm going to eat anyway and at least have some oral pleasure before aspiration pneumonia takes me.
Just uses tap water. So no alcohol or glycerine products, which would dry it even more.
I send you hugs and strength.
Remember to take care of yourself too. You will be no good to anyone if you are also ill.
Thanks for the explanation; it helps put create more perspective. Just a few comments - there's not much I can offer otherwise.
1. Not being able to talk. My father was in this situation for months after he had been trached. Being unable to speak is so frustrating for everyone. I eventually took a thick piece of 8.5 x 11" paper, divided it into high priority to lower priority wants and needs, clipped it to a clipboard and left it with him to ask for what he needed.
Divided into squares, some were things like "cold, need blanket", or "hot", or "call daughter, when coming to visit?", "need urinal -STAT", and similar requests. It helped, but unfortunately the staff kept removing it from his bed and putting it where he couldn't reach it. They apparently didn't realize it was his only method of communication.
2. Humidifier: I would go above the staff, not to chide them but to get a higher level involved. Ask the DON or someone at a management level. You might want to request a meeting so you and your family can discuss the highest priority needs, such as the mouth dryness.
You could probably find a small humidifier that you could even bring up; I've gotten them for $30 to $40 in pharmacy departments at grocery stores or Home Depot or Lowes.
3. As to a cool rag in the mouth, I saw different protocols from the long term care hospital and the SNF. The SNF focused more on comfort, but there also were more aides there to help. I think the reason why a cool rag isn't put in his mouth is b/c of the possibility of aspiration, even a little bit of water could trickle down into his throat. And that could lead to aspiration pneumonia, which would add another layer of complication to the mix.
4. The condition of his mouth is disturbing. I'm glad it was addressed yesterday, but it does sound like some type of softening agent is needed. This is beyond me; I've never experienced that. But what does concern me is any bacteria that might be trapped in the residue/coating. Has a thrush or other infection been diagnosed?
5. I've gone beyond the staff and contacted doctors' offices directly. Don't feel shy in doing that. Most doctors these days will respond and be more aware that the family is heavily involved.
Personally, I WOULD contact the ENT and raise the issues you've raised here, such as the humidifier, coating in his mouth and potential damage from the dryness of his skin.
6. Beyond the medical issues, you might want to bring a portable CD player, or iPod or whatever you might have and play music softly for your father to help relax him. That's what I did for Dad, and it made a big difference in anxiety level.
I wish I could offer more insight, but some of these conditions are ones with which I have no experience, and therefore have nothing to offer.
Sending best wishes for relief, comfort and calm for you and your family.
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