My mother can't swallow. Does swallowing go away all at once or does it come and go?

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My mother has had dementia for about 8 years. I think she got it from having sepsis. It's been a long 8 years. My question is around swallowing. Earlier in the year, she got aspirational pneumonia but recovered quickly. She now is in the ER because she can't swallow at all and has a lot of mucus in her mouth. She was even given the motion sickness patch which causes dry mouth but that didn't help.


What do you do if someone can't swallow? Does swallowing go away all at once or does it come and go?


Thanks
Hana

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Whenever a loved one is admitted to a hospital make sure it is a proper admissions from day 1. Otherwise you will incur numerous charges usually covered under the hospital admission blanket. Things like X rays, blood tests MRI's etc will be charged. The other thing is that you have to be hospitalized fro three days before Medicare will cover rehab.
As far as dysphagia is concerned, I have had it for some years and now it is part of the side effects of drugs I am taking so I don't expect it to recover. I do have a feeding tube so am able to get sufficient sustenance and fluids. I do have alot of trouble with pills but can usually get them down in soft foods. If not they can mostly be crushed and given down the tube. Long acting meds are the exception. What i can eat varies greatly from day to day and is usually based on whatever i fancy. Everything does have to be soft and well cookedbut not pureed.
A tube through the abdominal wall is for me a slight inconvenience and they do have to be changed in a hospital outpatients every three months. The main problem is that they clog very quickly so you have to be diligent about flushing before and after every feed. There can also be some drainage around the insertion point so one has to be aware of that. The tubing can also come apart during the night so it is important to cover the bed or in my case the recliner with something waterproof.
I use one of the washable waterproof pads under a quilt.
It sounds as thought OP's mother has something more going on than the dysphagia with the excess mucous but hopefully she will be admitted and the Drs will sort that out.
As someone else said Mom may be begining her final journey depending on her general condition. Excess secretion of mucous is very common at the end of life.
Suction under those conditions is not usually helpful. However if this is fluid in the lungs due to heart failure suction is useful while the diuretics do their job.
This is a very worrying time when a loved one declines in this way but you can be there to support her and bring comfort.
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Hano, when I had a stroke I thought it was the first one, but the neurologist claimed I had had several. I know that strokes or TIAs aren't always obvious to the individual, but I still find it hard to believe I've had multiple strokes with no side effects, especially at my young age of only 73.

But good for your mother that she takes no meds! We're a "no med" or "limited med" family as well.


Thanks for the updates.
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She's never been diagnosed with having a stroke or TIAs but you never know. It's really just been the step down decline of frontal lobe/ vascular dementia.
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Believe it or not, she isn't on any medicine. She used to be on a lot but doesn't need anything anymore. Medicines were making her worse.

I will certainly share what I learn.

One thing I can share now is that she has had swallowing issues before with pocketing food. She doesn't have any teeth anymore though. Just dentures. So she has basically been on a soft food diet for quite some time. She has an aid that helps feed her and I'm pretty sure they give her Ensure. One time I heard that thicker liquids are actually easier to swallow than thin ones like water. Yes, she looses weight during these episodes cause she's isn't eating enough. But once she eats again she has a voracious appetite and we have to make sure she doesn't stuff too much food in her mouth at once.
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HANA, Just saw your last post. Are you aware that any medicines administered during an observational stay (which is NOT an admission) are NOT covered by Medicare? I don't know about the cost of a videoscopic swallow study but I would ask.

I've found that ER doctors are not always aware that meds aren't covered for observational stays. I had to specifically limit what was given to me as I couldn't afford to pay outrageous amounts for meds that I could get cheaper from a pharmacy.
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Hano, sounds like you and your father are really "on top of the situation" already.

Again, I have only personal experience as to swallowing ability "coming and going." One of the internists during the last hospitalization told me that stroke can contribute to dysphagia. Has your mother been having TIAs or strokes? If so, can you correlate the increase in dysphagia with any particular TIA or stroke?

It could be that she has setbacks b/c of that, then strengthens. I'm just surmising here.

And another guess is that people's diets change during the seasons, and it might be that some of the foods she eats during one season are more along the level of a dysphagia diet, while others, such as meats, are less compatible.

Before I realized what was happening, I noticed my father choking while eating out, more than at home. He didn't realize he was eating and not swallowing everything - some portions of the food were being pocketed between his teeth and the interior of the skin around his mouth.

The speech pathologist told me during the last videoscopic swallow that he wasn't even aware of the pocketing. Her advice was "swish and spit" periodically while eating if necessary.

Chin tucks while eating were also advised.

I've often wondered if just a normal swallowing function can improve on its own despite the presence of dysphagia. It's something I'll have to ask a speech therapist the next time we have one for home care.

Please let us know what you learn from her doctors, if you don't mind sharing. It helps all of us who are dealing with this.

Another thought - you might ask them how they plan to accommodate her nutritional needs despite the dysphagia. I've been advised to use Boost Plus or Ensure Plus to add additional nutrients. Has your mother lost weight during these dysphagic episodes? That, and lack of adequate nutrition are something you'll want to factor into your care for her.
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They are admitting her to the hospital for observation. I told dad to ask her doctor to write an order to see if she has dysphagia. She usually passes swallowing tests, so we will see.
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GardenArtist,
Thank you so much for these questions to ask. An for everyone's else's responses.

My father is the one who is taking care of her, but I support him. One thing we have learned to do very well is analyze every data point of her condition. I think we initially did this as a coping mechanism when she first became sick and almost died from sepsis. I discovered that it was actually something we had in common and was a good way to get through a traumatic experience together.

She is the love of his life, so I don't think he will make any decision without first exploring every option known to man to help her. He did mention that he wanted to know why her swallowing ability kept going away, so I think this has been coming and going over this year.

I just spoke to him and he was going to call the speech therapist person to address the swallowing issue which we both agree is the root problem right now. Not the dehydration. The ER has given her an IV, and is checking for infection. The IV has made her a little more alert and she is letting them clean out her mouth now.

I'm going to go over these questions with him when we talk again in a few hours. Thank you so much.
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Hananoka, I'm also dealing with dysphagia, which is a swallowing disorder, and can contribute to aspiration pneumonia.

Some questions for your to ask your mother's doctors:

1. What is the source of the excess mucus? Since a motion sickness patch hasn't helped, what else will be tried?

2. Has she been evaluated for specific conditions or syndromes that cause excess mucus, and if not, will she be? If she has been, what has been ruled out? Has she had a videoscopic swallow, and if so, what were the results?

3. How is she getting nutrition now if she can't swallow? Are any of the medical staff raising the issue of a feeding tube?

4. Is suctioning going to be tried?

5. If any diagnosis for the cause of the mucus has been made, what are the treatment options?

6. As to what to do when someone can't swallow, I only can speak from experience. Videoscopic swallow studies are done, by which a qualified speech tech can observe what happens when a person swallows fluids, crushed crackers, or other test items. Direct, or "frank" aspiration, indicates liquids and food are going directly into the lungs. Risk of aspiration pneumonia is increased. Getting adequate nutrition is a serious issue.

If food or fluids at some level are actually going down into the esophagus, the person might be put on a dysphagia diet, of which there are several levels.

I'm most familiar with Dysphagia, level 1, in which foods are limited and pureed, much like mushy baby food but with just a bit more texture. Fluids need to be thickened.

As an example, fresh fruits with skins (apples, grapes, berries) aren't on the diet, unless they're skinned and pureed. But applesauce is allowed, and can be used creatively. E.g., my father can't eat toast, so he smears applesauce (or yogurt) on it and eat its that way. His speech therapist approved of this.

Meats must be ground and pureed. I use either orange juice, cider or gravy to moisten and flavor them.

Others here have and as Commutergirl states, still are providing dysphagia adapted diets. There are some tricks to make the food more appetizing.

7. On the issue of whether swallowing ability is lost spontaneously or gradually, I can only relate my experience. My father's first experience was after being intubated, then trached, for several months and being fed through a tube in his stomach.

He went through speech therapy to strengthen his swallowing muscles, did specific Shaker exercises, and eventually was determined after a few more videoscopic swallow studies that he could eat solid food again.

He became dysphagic again last year, although I think it was more gradual and I didn't recognize what was happening. I'd like to get more swallowing exercises provided for him, but I haven't much option if a speech therapist doesn't feel it necessary or appropriate. I tried a different therapist and will still pursue this, but am also trying to adapt to the new reality.

If you have any more questions on dysphagia and how to adapt, many other posters here offered very good insight when I posted on this issue sometime ago.

When I did some quick research earlier this year, I learned that approximately 15 million people deal with dysphagia at one level or another.


It's often hard to catch up with the doctors as you don't know for sure when they're making rounds. Sometimes I'll print out my questions and leave them with a nurse for the doctors to answer. Some doctors will also cause the patient's next of kin or responsible party. I've found in the last few years that more doctors are doing this voluntarily. I appreciate that.
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Lack of appetite and inability to swallow are hard to accept but a natural conclusion to advanced dementia, the fact that she isn't even able to swallow her own saliva make me wonder if she has entered the final phase of life. The ER is all about acute care and saving lives and is not always a good place for those with a terminal illness, is there anyone there who will take the time to have a frank discussion with you about your mom's prognosis?
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