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Rehab and swallowing Issues
Posted: Friday, April 26, 2019 5:54 AM
Joined: 1/7/2017
Posts: 111

I'm too tired to write enough background, having gotten up in the middle of the night and been reading posts here.

LO in rehab. About stage 5 (?) but of course traits from multiple 'stages'.

For the first time she has sometimes been 'refusing' medication (and PT), but last evening before I left, what I saw was she was unable to understand and/or swallow the medication. How do I know if it's not understanding or physically sometimes not able to swallow? I think it's the former, because when she's doing better she swallows her pills normally. 

If a LO is losing the ability to swallow due to brain deterioration, does that come and go at first or is it constant from the start?

Posted: Friday, April 26, 2019 8:53 AM
Joined: 3/14/2018
Posts: 167

I don’t know if the ability to swallow comes and goes but I see other abilities come and go.  Sometimes funcion seems related to clarity of mind and other times it seems like she just can’t make her body move the way she wants.
Greg G
Posted: Friday, April 26, 2019 11:12 AM
Joined: 2/8/2017
Posts: 920

Hey rockpaperscissors,

Since your loved one is already in rehab, how about they do a swallow test?  They should be familiar with it and then you may get some answers.

Good luck, Greg
Dreamer Lost
Posted: Friday, April 26, 2019 11:54 AM
Joined: 3/7/2019
Posts: 230

I will be interested to see other responses to this problem.  My DH also has seemed confused a few times when I give him his pills to swallow.  He still has a good appetite and eating all textures of foods at meal times so I believe it is confusion on his part. I put them in his hand and if he looks confused I gently encourage him to put them in his mouth and swallow them along with a glass of water.  He takes them seemingly without a problem then but it did scare me at first thinking it was a swallow problem. He also has questioned whether they were worth taking and was hesitant then also. I also make sure there are not too many large pills to swallow at one time and that he is not too tired.
Posted: Friday, April 26, 2019 12:38 PM
Joined: 10/21/2016
Posts: 2422

Pill swallowing is a common problem often starting in stage 5.  Typical solution is to crush the pill and mix it with applesauce or strawberry jam.  These two foods are a bit gritty and make it easy to hide the grit of the pills.
Posted: Friday, April 26, 2019 11:58 PM
Joined: 11/13/2018
Posts: 90

JJAz is doing about the same we do. Grinding them up with the exception of the time release ones. DW was holding pills in her mouth until she could later spit them out without me seeing her do it.

Yogurt in the morning with breakfast and pudding cup before bed gets the job done, "most" of the times. Some times you win, and some times you loose. Can't force it down her throat, so like so many thing, you just let it go, and walk away and try again next time.

DW will be going into MC next week. I will see how they handle that problem and let you know if they have a different way that works.

Posted: Saturday, April 27, 2019 11:47 AM
Joined: 1/7/2017
Posts: 111

Thanks for the feedback. I think it's a cognition issue, because it occurs when her confusion is worse due to fatigue or other health issues and then she has no trouble again.

It's helpful to know there's a swallow test! Hmmm ...

When she wasn't swallowing we tried the applesauce and she kept spitting it out and not letting it go down. She does have one pill that is absolutely necessary and keeps her out of the hospital. We got that one down somehow and let the rest go. The critical one isn't time release, so I think strawberry jam is worth a try when needed. She loves strawberry

The stage 5 input is good to know too though, since this is a new development in the context of other changes.

Posted: Monday, April 29, 2019 12:30 AM
Joined: 4/29/2019
Posts: 27

Hi paperrockscissors, 

My LO I care for has dysphagia. The first thing I began to notice was coughing. My LO had pneumonia at the time so I didn't read too much into it. Then I noticed the coughing was only occurring when my LO was eating and drinking. It can be different for each individual. I told my mom that our LO needed to be evaluated for swallowing. It's a good idea to monitor and see if they will eat certain foods and how it goes down. Some consistencies and textures will work better than others. People with limited ability to swallow tire very easy from eating. It could be a combination of things you could be looking at. Check with your LO's PCP regarding crushing the pills since some can't be. 

I hope that helps! <3

Posted: Monday, April 29, 2019 3:23 PM
Joined: 6/5/2014
Posts: 1283

Hello p-r-s:

My mid-stage 7 spouse has been dealing with swallowing/gagging problems* for quite a few months now, and they "come and go" daily; even during the course of a day. I've been told by several experienced caregivers and hospice nurses that they will continue to "come and go" until they eventually go and don't return.

As it was explained to me, the complex process of chewing & swallowing becomes almost automatic to us, but does require some degree of brain participation. Swallow tests will show the mechanical deficiencies, but quite often with dementia, it is not physical inability but that brain participation that is the missing link.

Unfortunately, if this is the case, rehab therapy may have only sporadic value and may be denied by insurance, if the OT feels it is caused by a neuro-disconnect. This can hold true for other functions as well, such as ambulation.  (At least that was our experience.)

* She sometimes even gags on her own saliva. At times, she holds food in her mouth (I believe when she's afraid to swallow). She's been on thickened liquids for about 6 months now...we have tried all textures of food with ever changing results. Anyone else?

Posted: Monday, April 29, 2019 6:32 PM
Joined: 3/8/2018
Posts: 788

When mom was home, I’d put the pills in her hand and give her a glass of water. At night, since both pills were small and halved, I put each in her mouth and gave her water

At MC they crush, add to a spoonful of pudding or applesauce and feed it to her

Also, some days she eats semi independently, and some days needs to be fed. And coaxed. *sigh* I also noticed she chews slower and longer than when at home

Posted: Tuesday, April 30, 2019 6:26 AM
Joined: 4/13/2019
Posts: 2

My dad has been struggling with chewing and swallowing for several months. It is definitely worse when fatigued. Foods with mixed consistencies are now impossible (like clam chowder, chicken soup) If I gave him an omelette, he would pick out or spit out ham and veggies. So for now, he eats only soft foods at dinner when tired. He’s very thin and prone to weight loss. Sometimes I add protein powder to foods such as pancakes. 

 Pills are very challenging. He states they get “stuck”. So applesauce it is.  Make sure to check with pharmacist as some pills should not be crushed/split. He often asks for crackers afterwards which he feels helps. 

I’ve read mixed reviews on using “chin tuck” to assist in swallowing pills. Increase risk for aspiration? 

Posted: Wednesday, May 1, 2019 9:57 AM
Joined: 1/7/2017
Posts: 111

I heard that pills that float are good for chin tuck, while pills that sink aren't. (Trying to imagine sinking pills.)

Once my LO was saying her pill was stuck in her throat, but on further investigation is was stuck under her tongue.

Posted: Wednesday, May 1, 2019 2:58 PM
Joined: 7/20/2017
Posts: 2

Both of my parents are in an assisted living facility in Maine and I live in Troy, NY. I do most of my caregiving via emails and phone calls with providers. 

After several choking incidents, they assigned a speech therapist to test both. I have to say at first I was confused because their speech is actually fine for the most part. However, the reports this professional have been sending are amazingly helpful:

For my mother: What I've noticed during my few sessions with your Mom: her ability to manage regular solids (e.g. muffins, cut sausage) and thin liquids varies across sessions. For example, Thursday she was able to manage thin liquids and regular solids without coughing and ate 100% of her meal; however, Tuesday she was too tired to attempt a snack when I arrived and last week she coughed w/ both thin liquids and regular solids (though was able to clear through cough). Fatigue is evident, some days she is so tired and just wants to rest in her chair, vocal volume is significantly reduced on these days and confusion more notable. 

With regard to her diet after discharge, I would recommend continuing w/ the current 'mechanical soft/ground meat' as this will be easier for her to manage. If she desires to eat something that is considered 'regular' consistency, I recommend she be allowed for quality of life purposes, though meats should be cut into bite size pieces roughly size of adult thumbnail) to reduce risk of choking. 

For my stepfather: I saw Mac during breakfast today and also had a chance to observe your mother. Mac had some 'mild' difficulty w/ trials of regular solid food today (english muffin) as demonstrated by coughing w/ swallow. He tends to talk w/ food in his mouth (unsafe eating behavior) and likes to add liquid to mouth prior to swallow which inconsistently results in cough. So, these behaviors along w/ slowed oral phase (keeps food in his mouth for chewing, weak chew) and piecemeal deglutition (swallows several times to clear one bite of food) appear to be impacting the overall safety of his swallow. 

Maybe I am in a state of gratefulness when anyone is this competent. The end result is that both of them will have a MBSS (Modified Barium Swallow Study) to rule out blockage in the esophagus. And if there is no blockage, the speech therapist will continue working with them. 

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