Saliva...101

[Tomswife]

Functions of Saliva​

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• Saliva is necessary for a healthy and normal mouth. Saliva serves multiple functions in addition to those mentioned above:
• Saliva helps maintain a neutral oral pH, thereby neutralizing potentially damaging acidic foods and liquids.
• Salivary lubrication of our oral tissues keeps them intact, thereby protecting these tissues from bacterial invasion and infection.
• Minerals in saliva can repair microscopic tooth decay. In addition, the mechanical action of saliva is important in helping wash food and debris away from our teeth and gums, a function important in preventing decay and periodontal/gum disease.
• Saliva facilitates swallowing by lubricating our food. Further, in making our food soluble, it makes it available to the taste buds located in the back of our tongue. It is an important factor in our ability to taste normally.
• Normal salivary lubrication facilitates speech.
• Saliva decreases the amount of plaque (thin bacterial film) on our teeth, thereby reducing the risk of periodontal disease.
• Proper salivary flow reduces the risk of fungal overgrowth in our mouths. Specifically, saliva helps prevent the development of oral candidiasis.

My PALS is now solely enteral tube feeding. I need to understand how to keep his mouth and throat moist. Some PALS have the opposite problem with too much mucous and saliva.

There is s very good article all about saliva and dry mouth at the Oley foundation site. Search for dry mouth.

 

[Mary2]

The secretions have added a new dimension to PAL's care and are wearing me down. The secretions are controlled by 4 medications which I give a few hours a part. I am getting worn down by this. Also I am giving meds at 1 and 6 in the morning. When help is here I am sleeping more. The meds cause constipation so he is on meds for the constipation and I am using warm prune juice down the g-tube every other day. He should be taking all his meds by g-tube now. I need to see which of these meds come in liquid form.

I have bagels and coca cola for breakfast. Noom has picked up on this and is sending me breakfast ideas. I am going to try and follow through on a couple....but I don't take much time to prepare breakfast for myself.

 

[Tomswife]

Bagels and tea for me. I have not put anything in the tube yet except water. Crushed pills and isosource. I know the next phase of this disease will be very complex. You have a lot to think through.

 

[Bestfriends14]

I had two huge handfuls of TJ'S Jingle Jangle this morning for my breakfast.

For Wayne, I put all meds through the G-tube and 2-3 tetra packs of Complete formula. I also add water throughout the day.

 

[KimT]

Mary,

Can you buy yourself some protein shakes for breakfast? You need protein and healthy fat for energy and staying power. I make my own and freeze them and just throw them in the Vitamix with walnut milk each morning.
Kate Farms has a very tasty coffee shake. It has real coffee so that could replace the coke. If you're eating bagels and coke each morning, your blood sugar will spike, then you'll crash. If you do have a bagel, put some peanut butter on it. And don't forget that YOU should also be drinking water throughout the day.

If you ever need help in ideas for meals/nutrition, just PM me.

 

[MupstateNY]

Mary, have you thought about contacting Compassionate Care? They've expanded to the whole US. They may be able to send some volunteers to give you a hand.

Does your ALSA chapter reimburse for out-of-pocket home health aides? Mine does but it took me several months to find this out. Up to $1,000 every three months.

It sounds like you need some help.

Are there neighbors you could ask? Even if you're not religious, maybe a temple or church would send some volunteers?

I take it you don't get "long-term care" through Medicaid?

 

[Mary2]

I have some hired care workers. GA ALSA distributes a 1k grant every 6 months for reimbursement of home care or medical supplies on a first come first serve basis. People from the church do offer to sit. But we would never have them do this. They would need to know how to use the cough assist, the suction, how to add thickener to water, the hoyer lyft, not to get overly anxious when PALS has problems with secretions, how to operate and tilt the wheel chair, how to handle the urinal and so forth. PALS still has some good quality to his days. He is on the computer 5 hours a day or we watch movies together or listen to audio books. But the hired care workers and my care giving are the reason he has the quality of life that he does have.

 

[MupstateNY]

My first child was extremely clingy as a baby, toddler, preschooler -- basically up to his teens. Having a mother's helper in the house for a few hours a week was helpful, because that person (s/he) could bring the little boy to "find Mama" if there was some crisis.

I wonder whether something like that would be helpful for you, so you could relax for a little bit, without worrying.

After several weeks of trying, I think I found a part-time home health aide who will do housework and help with the shower! Hopefully coming tomorrow at 3 for the first time!

 

[affected]

Mary can some of the people from church come and spend time with your PALS so that you can take some time off, but still be there at home? You could spend that time napping, exercising, doing something fun, even have a girlfriend of your own over and have a coffee in another part of the house?
That way, you are still there for the hard stuff and they are literally just there for company and time out.

 

[Mary2]

Thanks, we have 2 care workers. One comes 2 evenings a week and the other comes during some of the day time hours. I stopped going out when the secretions increased, but they are doing a little better. Today, I took the grand dog that I am watching and we went for a nice walk around a college campus that has a pond and some ducks. Other days I meet a friend at Panera for coffee. And I do a church zoom group.

Recently I have been sleeping when the care workers are here because I am tired from staying up late to give the pills for the secretions. I am trying to have all these meds in him by 11. Even that is late for me. The care worker when he comes...comes at 8. There isn't any way I can continue to give meds around the clock. Maybe he can go on Nuedexta and this will help.

 

[rao]

I have seen some pals with a separate machine with a tube that hangs in the mouth to keep saliva under control, would something like that work?

 

[Mary2]

Rao, if the secretions can't be controlled with meds, then we will try botox and if that doesn't work we might try looking into something like you are describing. Thank you for thinking of us!

 

[lisa g]

I have excess saliva mostly at night, what I do is to take a washcloth and fold it up then tuck under the sides of my trilogy that will catch any excess saliva. I was at clinic yesterday and we discussed possible botox injections. My neurologist was willing to write the order but while discussing the pros and cons he said that there was a possibility that the injections would make my swallowing worse so I opted to not take the botox.

 

[Mary2]

Thank you Lisa. That is helpful information. The secretions settled down around 3am last night but they are back this morning. It is interesting that they go away for hours and then just come back for no apparent reason. PALS is only taking some meds with a little pudding. He is eating nothing else by mouth.

 

[lisa g]

Your welcome Mary. If your husband has a peg, I would seriously talk to his neurologist about possible complications with swallowing after botox.

I can have nothing to eat and I'll start with increased saliva. What I usually do is drink some warm pineapple juice or put some fresh papaya in a smoothie to decrease the saliva. I think I've also read on the forum that warm water with lemon, I haven't tried that yet.