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googie.cat

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Hi, I'm hoping for some input from caregivers of people who have had bulbar ALS but chose not to have a feeding tube.

Our situation is a bit different in that my 72-year-old mother's journey began with frontotemporal dementia about 2 years ago, and then bulbar ALS symptoms arrived about a year later. She no longer speaks (more because she doesn't have the cognitive ability to as much as any physical issues) and is cognitively impaired so much that you can't say simple things like "tuck your chin when swallowing," because she can't follow directions. (She also has extremely impaired impulse control)

The decision has been made that there will be no feeding tube, which the family and her dementia doctor are all comfortable with.

A recent swallowing study showed what we already knew, which is that at this point she should only be on thickened liquids and maybe some very small bites of well pureed foods. Her throat muscles are "extremely" weak, and she silently aspirates any thin liquids. Her pharynx is all but paralyzed.

She is losing about a pound a week, but no drastic drops (she's 5'5" and now weighs about 120, down from around 140). She as yet as no problems with her legs, and maybe just very slight weakness in her hands. She walks about 1 1/2 miles a day. This is probably keeping pneumonia at bay, because she is still so healthy physically.

What I'm looking for are experiences of how the decline continues to go for bulbar ALS sufferers with no PEG. Will she one day just be unable to swallow? Will there be a period of where we just get smaller and smaller amounts in her?

She doesn't really seem to have any respiratory problems yet.

It's possible that the dementia could get to a point where she forgets *how* to swallow, but the ALS really seems to be well ahead of the FTD at this point.

I know this may be a painful discussion, but it's hard to find much information on this, so I'd be grateful for anyone who might take the time to talk about their similar journey.
 

Nikki J

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Hi my mom had dementia onset then came the swallowing and loss of speech. She had many years before made it clear she would not want a feeding tube under any circumstances. Her swallowing just got worse and worse with choking and I am sure aspiration even of puréed and very thickened liquids. She took in less and less but actually died before it was completely down to zero intake. I am sorry it is very hard. Feeding was a true nightmare
You will be in my prayers
 

Nighthawk

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Hi,

I have ALS with Bulbar onset but not the FTD part.
I still haven't got the PEG-tube (still considering it, but not decision made yet).

I have no problems swallowing solid food...as long as it's been puréed so I don't choke or aspirate.
With liquids, I could say I can still swallow them as long as I do it slowly (small sips at a time) and I tuck my chin.
I don't have respiratory issues just yet.

From reading your post, I see your mother is slowly losing weight.
An idea came through my mind and, since you wrote she's still able to drink thick liquids, have you considered nutritional drinks such as Ensure Plus or Boost Plus?
They have many calories that could help keep weight as well as many vitamins and minerals.

What worries me a little bit, in regards to your mother is that if she continues to steadily lose weight and can no longer eat anything at all and ends up in an Hospice or a hospital ER, it would be hard for her to spend days there slowly starving.


I wish I could offer more help and/or advice to you in this difficult situation but, let's hope other PALS and CALS reply to you with more advice.


Take care.


NH
 

googie.cat

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Nikki, thanks for replying on what I know is a painful subject for you. I'm so sorry about your Mom.

NH, thanks also. My Mom actually already heavily relies on Ensure shakes, which we blend with bananas, other fruit, and ThickIt to make them thick enough for her to get down. Her dementia doctor was impressed that she had only lost three pounds in the last month, given how bad the swallowing study was. We work really hard to get as much in her as we can.

There seems to be an amount of research that indicates when a body is shutting down, a lack of food and hydration does not lead to the suffering we may think it would. Given my mother's dementia, I'm not sure she would really understand that she wasn't eating anyway. She already pushes away food after just a few bites, but we are very persistent with her.

A I said, my main interest is in the process up until the eating stops, whether it's a slow continuing decline of ability or whether they'd a sudden stopping of swallowing. My Mom's progression is clearly not a slow one, so we all recognize this may not be a drawn out situation.
 

Nikki J

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My experience with my mother and with other people supports the apparent lack of suffering. And if you have ever gone hungry for an extended time you probably know that you get past hunger after a while. You might feel a little lightheaded but it is not painful. My mother could indicate distress until the end and she did not seem to be suffering (distress would be a transient issue that when we figured it out and fixed it the distress symptoms went away)

Wishing you strength and comfort
Nikki
 

Gunnerhappy

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I have Bulbar onset ALS which was diagnosed about 9 months ago. I have zero speech and choking on anything eaten faster than at a snail's pace. Choking is continuingly getting worse so I an scheduled for a stomach tube in about a week. I can always have it pulled but I lost 27 pounds in under 2 months!
 

Barbie

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you can also add benecalorie to her drinks--350 calories and only one ounce of liquid. buy it online. it is tasteless and mixes well
 

Katie C

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So sorry... I somehow missed your original post! And I apologize in advance for anything that's just repeated information.

The most important things at the point it sounds like you are at are swallowing slowly/carefully and getting her to take in as many calories as possible. Be creative... with the use of sauces, gravies, creams, etc I found I was able to blend/puree almost anything including pot pies and pizza! This kept him interested in eating. Small bites and tucking the chin help... but because the FTD inhibits (among other things) an understanding of "big bites make me choke" you need to be watchful and ready to remind with every bite sometimes.

Think liquids as you've learned are very dangerous. Thickit is easily available by mail or at your local CVS or Walgreens. Glen even used it in his beer. Sometimes it takes a little practice to figure out the right texture but it's worth it and I think adds a lot to quality of life.

One last thing... how mobile is your Mom? My son and I had to put baby locks on all the kitchen cabinets to try to keep Glen from getting into the kitchen and finding something he shouldn't eat. Crackers, cookies, etc were stored on high shelves he couldn't reach. We thought we had removed or hidden anything dangerous, and yet one morning before I was up, he found an apple. Choking on that apple is what caused the aspiration pneumonia that ultimately ended his journey. But without our vigilance, that could have happened much sooner.

ALS/FTD is an especially hard road... we're here for you... please keep asking questions.
 

googie.cat

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Thanks again for the replies, and for the tips. We are doing pretty well with feeding her and getting calories into her, and she is almost never alone and so doesn't have much opportunity to try to eat something she shouldn't.

What I'm more interested in, though, is an understanding how the progression goes as swallowing becomes so problematic. We're already far down the road, and given the trajectory of her illness to this point, I don't think this is going to go on for many many months. So I was wondering more about what we're going to see--is she just going to stop being able to swallow? Will there be a longish period of time when we can get very small amounts of food into her, which will cause the weight loss to accelerate?

She has no limb involvement yet, so is very mobile still (which is why we have to have her watched all the time). She's quite "healthy" other than the dementia and the throat issues. She also doesn't seem to have any respiratory issues yet.

I'm really just trying to be prepared for what will be coming, so I can be ready to help my father deal with Mom's further deterioration....
 

Katie C

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I think the reason you're not getting the answers you're looking for is that nobody can really tell you for sure. Every person responds differently, every case takes its own twists and turns. It's one of the hardest things to deal with with ALS.
 

googie.cat

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Yes, absolutely, but I was hoping for some people here who have already been down the path, like Nikki up above, just so I could read some experiences.
 

Katie C

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But see, the experience can be peaceful, as Nikki describes. Or a seemingly simple choking incident can set off aspiration pneumonia, which is what happened with my husband... most certainly not peaceful for someone who wanted no PEG and no trache. Those are your two extremes.. it can be anywhere on a continuum between the two.
 

DawneO

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goooglecat
I am a caregiver. My friend also has bulbar onset and I have the same questions as you. I am also frustrated by the lack of answers- as a nurse, I can't help but feel that someone knows the "usual" progression, but I can't get the docs or nurses involved in her care to share with me. I guess it is because no one wants to share a bad prognosis.

I'll tell you what I see. The swallowing seems to get more difficult gradually- eating takes longer, dry foods and tough foods (steak) go first. Choking is more frequent. the speech deteriorates too. I don't think an abrupt stop in the ability to swallow as something we will see. I think we will need to be more vigilant with every meal, watching to see what goes down easily and what causes problems and continuously modify food prep.
One tip I have for you is small frequent meals. We are so used to sitting down for breakfast lunch and supper...but the big meals take a lot out of the bulbar patient. if there is a constant availaility or offer of food and drinks- 6 -8 times a day, the bulbar ALS person does MUCH better.
Hope this helps.
D
 

googie.cat

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Hi Dawne--

Thanks for the reply, and I'm sorry about your friend. It must be hard to be a nurse and still feel like you're not getting answers.

We're pretty far down this road--we've been handling my mother's choking problems for over a year, and she is now on very very very pureed foods and thickened liquids. Her last swallowing study a few weeks ago rated her an 8 out of 8 on the penetration/aspiration scale, with a guarded/poor outlook. She immediately silently aspirates any thin liquids (which we've avoided for a number of months anyway). They said she should only have small spoonfuls of pureed foods (along with nectar consistency liquids), but we've found that "slick and sweet" foods still go down easily, like applesauce or pudding or thickened tomato soup. She also gets a lot of thickened Ensure.

Her pharynx is already mostly paralyzed ("absent superior and middle pharyngeal construction" and "markedly reduced inferior pharyngeal constriction") and other parts of her throat and swallowing process are diminished as well ("epiglottic tilt was absent and hyoid elevation was limited").

The fact that she's losing less than a pound a week despite such throat issues at least shows that we're doing pretty well getting calories into her. Her cognitive impairments make handling her a bit of a challenge--it's like a 3-year-old with swallowing problems, because she really has no understanding.

All this, though, is why I was asking, what comes next? She's clearly on the cusp of losing the ability to control her throat muscles completely. And given that it's only taken a year to get to this point, it would seem that we are on a relatively accelerated timeline. (I'm also starting to see just within the past few days some evidence of what I think is foot drop in her right food.)

That's why I'm interested in the experiences when a feeding tube is refused--because we're long past the point when most PALS would have had one inserted, and I just want to hear stories of what people have seen when there's no tube. I know everyone is different, and I am far enough along in this journey to know about not extrapolating from others' experiences, but I'd still just be interested in the path those without feeding tubes experience(d).
 

Nighthawk

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I think the real reason why you are not getting responses from PALS and CALS who may have to deal with not having a PEG-tube inserted for their nourishment is mainly because more than 90% of PALS on this board get the PEG-tube.

Some PALS may reject it at the beginning as they see it as an invasive procedure, and also that they perceive, that if they get it, they might be "giving in" to the disease.
But, even MANY of these PALS change their minds down the road and opt for getting the PEG-tube inserted.

Every human being, regardless it's a PALS or a healthy person tends cling to life with teeth and nails. It's human nature not wanting to die.
And, because dying by starvation (in my imagination, I think) must be a difficult way to die, because you wouldn't die immediately, you would die slowly and...probably suffering (again, that's what I think), not many may want to die like that. People usually wish a peaceful and quick death.


All this response is just an opinion (mine, in this case).
Other people may disagree.



NH
 
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