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 Holding food in mouth 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Holding food in mouth
Lately when I'm feeding my husband he sometimes [like this morning] will hold food in his mouth not chewing or swallowing, just holding it there. Sometime he doesn't even close his mouth, it just falls out. Has anyone else seen this and is the problem that they forgot what to do with it or is it something else?

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Dec 17, 2011 6:41 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Holding food in mouth
I haven't any experience with this. I hope sometone will have information for you.

I just want to send hugs your way as you deal with the potholes and craters on the road in this part of the journey.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Dec 17, 2011 8:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Holding food in mouth
Thank you, Jeanne. I've always been thankful that he doesn't have a swallowing problem--he never chokes. But this is puzzling. I'm inclined to think he just doesn't get his eating mechanisms into gear just as he would often freeze up when he was walking. But it isn't happening in isolation. Some days [of late] he does this with every bite and I have to remind him to chew and swallow. It's almost as if he's forgotten how to eat. :|

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Dec 17, 2011 8:24 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Holding food in mouth
Does he respond appropriately when you do remind him?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Dec 17, 2011 8:33 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Holding food in mouth
Sometimes. And sometimes he just leaves his mouth open and the food falls out. Like he doesn't know it's in there.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Dec 17, 2011 8:36 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Holding food in mouth
Pat,

Did you post about this before? If not, it's deja vu on my part.

My dad did this. I concluded it was:
1- He forgot how to chew and swallow.
2- He was afraid to swallow.

So, I reminded him with each bite to chew, then after several chews, I would remind him to swallow. This worked but was laborious.

When he started pushing the food out, then I decided it was more #2 than #1. After 5 days of that, he had a decision -- feeding tube or no feeding tube.

Robin


Sun Dec 18, 2011 1:49 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Holding food in mouth
Robin, I may have posted before about food falling out of his mouth but mainly because he is bent over and doesn't always close his mouth. I really think that he isn't always aware that the food is there. The triggers [the sensory signals] that usually stimulate chewing and swallowing aren't always working, or so it seems. This comes and goes. Today he was like this but Thursday, he was eating fine. Yes, I often have to coach him to chew and swallow when this is happening. Just wondered if anyone else had seen this and that it comes and goes. Thank you.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Dec 18, 2011 2:37 am
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: Holding food in mouth
Good morning,
This topic is so interesting and relevant for me. Tom just started doing this the past week. I believe the problem has more than one component. Besides the sensory signals that get mixed up I think the auditory commands get mixed up as well. I noticed this when working with Tom brushing his teeth. I would tell him to "spit" and he would try to "sit." The same thing happens when eating. I told him not to hold the pills in his mouth because they would dissolve, so he spit them out. When we tried again, he wouldn't swallow. The problem with spitting was solved by me giving him a demonstration. The swallowing demo. didn't work and I was at a loss as to how to explain it on his level. BTW we have the same problem with having to go to the bathroom. So frustrating for both of us. Kathy

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Sun Dec 18, 2011 10:37 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Holding food in mouth
Yes, Kathy. There is such an interplay of deficits one can never know for sure which is doing what. That and the fluctuations....what a confusing disease!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Dec 18, 2011 11:14 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Holding food in mouth
It seems like there was discussion on this a while back, and I'm not sure if it was you, Pat, or someone else posting about it. Is Derek able to communicate well enough that you can ask him if he WANTS to eat or not? Do you think maybe he just doesn't want to eat, or he can't eat for physiological reasons?
Does he do this more with solids than liquids?
I know how hard you try to do everything right Pat. Sending you a giant hug, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Dec 18, 2011 3:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Holding food in mouth
He has slept pretty much around the clock since yesterday. Vitals are fine, breathing regular, etc. We can rouse him but he can't stay awake. He indicated his mouth was dry after I woke him and I gave him some water with a syringe as he is unable to use a straw. I don't know if this is the beginning of the end or just another bump in the road. I just came home for a quick bite and then I'll be back at the SNF. Prayers welcome.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Dec 18, 2011 3:54 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Holding food in mouth
mockturtle wrote:
I don't know if this is the beginning of the end or just another bump in the road.


Wishing you the strength and courage to deal with it either way. With your record to date, I'm sure you will do great.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Dec 18, 2011 4:29 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Holding food in mouth
Oh Pat. Please keep us posted. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Dec 18, 2011 4:30 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Holding food in mouth
Of course you will both be in my prayers. God Bless, Ger xx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Dec 18, 2011 5:36 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 191
Location: Portland, Or
Post Re: Holding food in mouth
You will both be in my prayers, hang in there.

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Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Sun Dec 18, 2011 8:09 pm
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