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 Holding food in mouth 
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Joined: Mon Dec 12, 2011 3:46 pm
Posts: 19
Post Re: Holding food in mouth
Hi Lynn and Everyone,

Yes, this is a problem. And yes, budgets and cutbacks are always the reason given. Well, I am going to be frank - food and drink in front of someone - and then asking a patient why he/she is "refusing to eat" and taking their meal away and then saying "too bad for you - you will have to wait until dinner now".

These are patients who understand they want to eat but just cannot make the brain work and/or use the appendages properly... to be quite frank - I think a completely different "discourse" around care for LBD'ers (and other dementia cases) has to be made... my belief is that they understand MORE than they can communicate back - that their motor skills, their speech, their visual functions et cetera "misfire" - but that they still understand.

Sometimes, it is true, there are outright refusals to eat - for me, I am able to tell the difference with my Dad. LBD'ers in particular have very lucid moments ... my Dad was able to say to me the other day (with no grammatical errors by the way)... :...it is frustrating... I call for them nicely and say excuse me but no one stops - they just walk by - they don't even look down at me...I try to follow their orders but they all just have me feeling like I am doing everything wrong or something...". (And then his lower lip started trembling and he said "...they don't even offer you chocolate milk here...". Prior to Dad being in the hospital I was sometimes bringing a hot chocolate to him. My heart was broken...

So they do understand when they are not being fed...or comforted...or their needs are not met... believe that medical personnel and some care givers need to re-position dementia care - and "assume" that someone understands - but just is not able to control their bodies or communicate back...

Just this understanding would very much change how are LO's are treated... medical personnel - please assume that your patient understands...not mathematical formulas or the date or time - but that they understand the words you are saying to them and in front of them (to your colleagues and the families)...


Tue Dec 20, 2011 1:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Holding food in mouth
Your post nearly made me cry. I also observed times when my dad would say "they don't take me to meals anymore. I haven't eaten in 3 days." This would often be just after I'd taken him myself to the dining room and fed him. So I'd pretend like he hadn't just come back from a meal and offer him some food. Sometimes he'd eat it, sometimes he wouldn't.
But there is NO excuse for people to not be fed or given drinks within reasonable time between meals or at meal time. When my dad got an evaluation form from the hospital, he was not able to answer it so I did it for him and wrote a scathing review of his experiences there. Then I added how much things turned around after the wonderful head nurse came down to talk with me, listened to my concerns, and his nursing care improved 100%. (She was the one who was laid off about a year later).
So much for feedback to improve patient care! 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.


Tue Dec 20, 2011 4:17 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Holding food in mouth
I did not mean it was OK to withhold food or drink. It is not. Nor is removing a plate or cup before the resident indicates he or she is finished. I guess that hasn't been our experience. As I mentioned, the aides cajole, plead and bargain with residents to get them to eat. But they can't do what I do, as I have only my mother to worry about. They can't sit with one person through the entire meal and slowly feed them small bites and careful drinks.

I only meant to illustrate that, whenever possible, your involvement in direct care may improve the situation. Even if it is just calling the dietician/food service manager and explaining your LO's likes and dislikes, even chocolate milk. I probably do take it to the extreme, as I do not just only call attention to missing food items on some of Mom's tablemates' plates (food service missed them). I have even gone to the kitchen when the evening meal has been delayed and insisted they do what they had to in order to get the food to the unit. And they responded.

Budgets are a major issue. The reason you hear it so often is that so many budgets have been sliced. Not because it is a convenient excuse. As someone who works with a dedicated group of professionals trying to do as much or more as we did with half again more people, I know a lot of slow down and reduced attention is because there just aren't enough people to do all of the work. I know they make mistakes and sometimes can't provide all of the attention someone wants or needs. But they try.

The other day, I called the attention of the A-team nurse (my sisters and I have identified the A, B, C and D teams.) to a tablemate of Mom's who was obviously not feeling well. This woman has a behavior of complaining about how she feels, so even the nurses had assumed it was her behavior, that she wasn't really sick. Well, when the nurse did take her vitals, she most definitely was sick and she got the attention she needed. This was the best nurse in the facility and one I trust with just about everything. But even she couldn't be on top of everything all of the time.

I guess it "takes a village" to care for our LOs, too. Our involvement, with everyone from the aides to the Administrator, is important to the quality of our LOs' care. I am not making excuses for anyone. But a lack of staff (resulting in a lack of time and attention) is a reality everywhere these days. It's not an excuse - it's a cause. And it is real and it won't change until some finance people finally understand that people, staffing, are a finite resource.

In my mom's case, though some aides and nurses are better than others, I know they are doing the best they can. Sure, if I had the time to volunteer to bring a cart around with drinks - even just water - I think it would be an improvement. But I can't so I do what I can when I am there. I sometimes see areas for improvement and point them out to the ND and the Administrator, who do respond. I truly feel that we are working together to do the best we can for Mom with the resources available. Sure, if all of Mom's daughters quit working and gave her 24/7 care at home (which would be 1 on 1), Mom would get better care. No, wait. If I quit working, I won't be able to pay the mortgage and there would be no roof over my - or Mom's - head. Which is considerably worse care. I have to remind myself of this every time I get the guilts.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Dec 20, 2011 4:59 pm
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Joined: Wed May 06, 2009 10:15 pm
Posts: 15
Location: Kansas
Post Re: Holding food in mouth
Pat, my husband has the same behavior but it is intermittent. Some days food will sit in his mouth at every meal. I have no idea why this happens, but my best guess has been "forgetting" to chew. Is your husband losing weight?

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P. Jo Ann, 59, married 31 years to Richard, 78 yrs old. Richard was diagnosed spring 2008 with LBD.


Tue Jan 03, 2012 12:00 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Holding food in mouth
They only weigh him once a month on the wheelchair in the shower room and he has [by their report] only lost a few pounds although he looks thinner to me. Holding food in his mouth is intermittent with him, too. The past few days he has been swallowing without hesitation. Just like his sleeping around the clock a couple of weeks ago, he seems to have come out of it. :P At least for now.

_________________
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.


Tue Jan 03, 2012 1:45 am
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Joined: Mon Dec 12, 2011 3:46 pm
Posts: 19
Post Re: Holding food in mouth
My Dad eats massively - and he is tall and slim. Mum and I go in twice a day and feed him the hospital lunch, then our dessert, our snack and then the hospital dinner. Mum and I have figured out that with the extra food we bring in he is eating at least 700 - 900 MORE calories than he otherwise would be if we did not go in (just from the extra food we bring in). Over a week that is 1 pound to 1 1/2 pounds...so he could easily be losing 5 pounds a month if we were not feeding him. To me, this is reprehensible - good thing mum and I can go in.

And...he would be eating way less of what is given to him on his plate because the nurses will not assist him with his feeding...they believe he is just being obstinate when he does not eat and so he goes without if he does not eat...which Mum and I discovered...which is why we go in... and a nurse advised us to do so...

So, Dad would only be eating about half the calories if we did not feed him his meals and snacks...I believe in the earlier stages of dementia that this is why the elderly lose weight...the meals are small and the nurses do not always assist...


Tue Jan 03, 2012 4:21 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Holding food in mouth
Ellen,

I read somewhere, in my early research, that someone with LBD (at a certain stage, anyway) will continue to eat as long as food is offered, either placed in front of him or fed to him. Has your dad always been a massive eater? If not, you might want to check up on this.

In the early days at the SNF, Mom ate absolutely everything that was offered, even things she had never liked. Then, she'd get sick and cough (or other) some of it back out. She was miserable, but couldn't make the connection between overeating and feeling sick. A year later, she is finally eating less - sometimes way too much less - and she is losing weight. Interestingly, she did not gain any weight during the overeating months.

If your dad is eating a lot more than usual, is he feeling sick afterward? Any adverse or uncomfortable effects? We finally had to start removing food from Mom's meal tray and closely regulate how much food she actually saw. If she saw it, she ate it.

I'm glad your dad has you and your mom with him to help with things like mealtimes.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Jan 03, 2012 10:35 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Holding food in mouth
Quote:
If your dad is eating a lot more than usual, is he feeling sick afterward? Any adverse or uncomfortable effects? We finally had to start removing food from Mom's meal tray and closely regulate how much food she actually saw. If she saw it, she ate it.
That's interesting, Kate. There is a woman at my husband's SNF who will eat anything she can get her hands on. She has to be watched very closely or she will take things off someone else's tray. I don't know the nature of her disorder.

_________________
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.


Tue Jan 03, 2012 11:12 am
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