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 Holding food in mouth 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Holding food in mouth
pat..
thinking of you both....sending you strength..
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 1-14,released to memory care..


Sun Dec 18, 2011 8:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Holding food in mouth
Thanks, everyone. They got him up this evening and he ate a little dinner and seems better but not quite the same [hard to describe]. He is much mellower than usual. It was scary seeing him sleep that long. He was still up when I left a little while ago but they'll be putting him to bed soon. We'll just see if this repeats itself or if it was just an isolated event.

_________________
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 10:34 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Holding food in mouth
Praying for Clarity for all of us.

Taking your journey with you gives me hope, that such deep felt caring and compassion will be in my life, later when I need it.

So many things at play, only thing certain, the brain doesn't do what it is supposed to.

I choke often, so this is different for me, early on.

I find myself holding liquid in my mouth…and having to think really hard…..
and formulate a plan, step by step to swallow, the mouthful, without choking…
and getting it to all go down, and not swallow half, and then push the other half back up…..

…..just thoughts…
I think so much of the problems are the disassociated short term memory blocks….
the brain is just lost….as to what is next to do…
and as time goes on and the meds have less and less to work with….
.less and less chance of any association being made...

….
Prayers for Clarity.
Both of you Pat and Derek are in my thoughts.

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sun Dec 18, 2011 10:41 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Holding food in mouth
Glad he was better tonight Pat.

_________________
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 10:42 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Holding food in mouth
Quote:
I think so much of the problems are the disassociated short term memory blocks….
the brain is just lost….as to what is next to do…
and as time goes on and the meds have less and less to work with….
.less and less chance of any association being made...


I think you're right, Craig. And thanks for your prayers.

_________________
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 10:50 pm
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Joined: Mon Dec 12, 2011 3:46 pm
Posts: 19
Post Re: Holding food in mouth
Re Swallowing,
Have understood from research that peristalysis problem in addition to the brain processing problems can be associated with LBD. This means that their esophagus "stiffens" and becomes rigid. So they have fear around chewing and swallowing - natures way perhaps of ensuring they do not choke to death. This is important for caregivers and medical staff and doctors et cetera to know because I have experienced care givers and medical personnel simply believing the person was being 'obstinate' or 'stubborn' or 'difficult'.

With my Dad:
a) we ensure his food textures are varied - for instance if he is given a sandwich in the hospital - then we pour some soup in between the slices of bread - just a little - to moisten it up. We alternate liquid and solids - this seems to work best - "wet their whistle"...
b) ensure lots of liquid available - this can include soup...have found, to be frank, that not nearly enough fluids are offered ... and the problem is LBD'ers do not always recognize their thirst or if they do they do not know how to say they are thirsty... for instance, my Dad would only be having the equivalent of 3/4 of a quart a day if we did not supplement his fluids... when he coughs we find it is hard to feed him - a sign that he is dry... please note this in care homes or when instructing caregivers... they must be very conscious of fluid intake. Have found that when LBD'ers are hungry or have low blood sugar or need to drink that they can have quite severe behavioural problems due to even the slight chemical changes caused by being even slightly hungry or thirsty.
b) also, we remind my dad to chew and remind him to swallow... two separate reminders as opposed to being relayed to him at once
c) we explain to him every single mouthful what we are doing step by step ... almost treat him as though he is blind... "now I am putting some meatloaf on the fork Dad and am going to pop it in your mouth for you... can you see the fork?" This procedure is incredibly laborious... but works...
d) and we do cue him when he mixes up instructions - for instance he clenches his mouth shut when we ask him to open it... so we tell him "Dad you had mentioned you are hungry but you are actually closing your mouth now and I cannot get the food in - understand that you are trying to open it so let us just start over - I will put the fork back down on the plate - can you see the fork? ". I repeat different versions of this a few times... and then say "ok I will wait here...you let me know with your mouth when you want more food". He relaxes and then I can feed him
e) also find that LBD'ers can "freeze" - are virtually only semi-conscious - so have found that if I relax and lean my head back in the chair and wait a minute or a few minutes - their freezing state passes

Hopefully these tips help medical personnel and caregivers and families alike....


Mon Dec 19, 2011 1:50 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: Holding food in mouth
Yes. It helps. Can you give me a citation for the information and would you mind if I shared it with the ND at Mom's SNF?

I am constantly asking that water be passed out more regularly and more often at Mom's SNF. They're great in all other respects, but I have been there for extended periods of time and I haven't seen anything that addresses this specifically. I asked about it and was told that between the 3 meals and 2 snack times a day, they believe that they are making sure everyone gets something to drink. But here's the rub. They don't pay a lot of attention to if the resident drinks the fluid provided. One resident was asking for water so much that I finally asked the nurse whether she could have water (as opposed to thickened water) and asked if I could bring her a glass. We keep bottles of water, Coke and a few kinds of juice in Mom's room. She doesn't care if the drink is warm. Somehow, having the juice, etc. specifically for Mom and in her room has prompted a couple of the staff to take a bottle out for her. Now if I could only get them to pour some in the covered cups I provide...

Mom has pocketed food in her mouth ever since she got to the SNF and I think even before. When Mom needs me to help her eat, I greatly reduce the size of each bite, compared to what she does and what the staff tries to shove in patient's mouths. Actually they are getting better. But I did bring it up with the ND. Once, I told an aide that was trying to get a small lady to accept huge bites that Mom's generation were carefully taught their manners and that ladies take small bites. Then she said her mother did to. I wonder what made her think that it wasn't necessary when she was feeding someone else.

I have also been known to withhold the next bite until Mom empties her cheeks. My belief is that it is an attention issue. When Mom is distracted by just about anything in the room, she isn't concentrating on the process of eating and simply forgets to move the food from the mouth to the throat.

Kate

Pat, I hope things are better for Derek and that you maybe have a better idea of what this change means. I'll be thinking of you over the holidays.

_________________
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]


Mon Dec 19, 2011 3:06 pm
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Joined: Mon Dec 12, 2011 3:46 pm
Posts: 19
Post Re: Holding food in mouth
Hi Kate,

Yes you have noticed correctly - have found it quite common that caregivers, family and medical personnel do not ensure the food is being eaten or the fluids are being taken in. Someone simply scolds and then fills in the chart with the medical equivalent of "he refused to eat" or 'was not hungry' or did not drink his milk. I am finding that all dementia patients - not just LBD'ers - need way more assistance with eating and drinking ... and that it requires patience and time - both of which seem to be lacking in Canadian hospitals and care homes - not sure about the American once because I have no experience...

And yes, anything diverting their attention diverts their brains... so any chaos or a nurse speaking to them accusingly and threatening to take their meal or drink away simply has a LBD'er divert his/her attention from the task that they are trying to accomplish in the first place - an absolutely futile circle for the patient and the person feeding him/her...

And also yes to the smaller mouthfuls for sure... think that the Feeders become frustrated at times with the "time" involved and start, even absentmindedly heeping the forks or spoons...

Regarding citations ... unfortunately no citation for what I passed on ... this comes from my Mum and I both having worked in a care home and hospital respectively and being the sole caregivers of my Dad for 1.5 years with no outside assistance (apart from medical appointments) whatsoever... so we learned many of the coping mechanisms in order to ensure Dad maintained his love of food and a healthy appetite ... and so I passed these tips on in case someone might be able to use any of them at all ... and will continue to pass on what I learn as I move through this process of looking after my dear Daddy.


Mon Dec 19, 2011 7:43 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Holding food in mouth
I have observed that, at my husband's nursing facility, extreme care and patience is used in assisting residents with eating. Those who are independent usually eat in the big main dining room. In the smaller dining room on my husband's wing are those, like him, who need either feeding or considerable assistance. Everyone takes part in feeding residents, not just the aides: The therapists, nurses and even some managers. They will often have one staff member feeding two or sometimes three residents, which gives each one ample time to process their food. When I am not there, this is where my husband eats. Residents who are bed-bound are fed one-on-one in their rooms and I have seen that the staff are very patient with these residents, as well. It has to be a priority with the facility.

_________________
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.


Mon Dec 19, 2011 8:18 pm
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Joined: Mon Dec 12, 2011 3:46 pm
Posts: 19
Post Re: Holding food in mouth
Hi Pat,
Well I very glad to hear your husbands care facility provides so much care and attention re meals and provides one-on-one or one aid to 2 or 3 patients... gives me hope.

Passed on my experience because I would very much like people to be aware of the potential for LBD'ers to not eat or drink enough. And would like to relay a conversation that a health care worker had with my Mum and I.... she actually went out of her way to mention to us that they are assigned 2 or 3 patients to feed in a circle just as you have mentioned, and that they often do not have time to finish 3 meals with 3 patients. It is therefore (and I quote) "...highly highly recommended that families and friends attend the patient for at least one meal and preferably two meals a day so that they get enough to eat and drink...". Needless to say I was stunned that a hospital would be telling me this... and this is in a hospital - we are awaiting my Dad to be placed in a facility...perhaps the facility experience will be different...

Would like to reiterate that after having observed my Dad in care now - and attended him every day for 2 meals a day for the last 4 weeks - we have seen people not be fed, and encouraged only slightly - and go without drink and food...I know Dad would have gone short of food and drink had we not fed him and supplemented him with food we bring from home...Dad is a tall tall man - and though very slim - his appetite is extremely good... the hospital meals do not even come close to giving him enough food...and also lack nutrients simply because of how they are prepared...we bring Dad milk and fresh fruit and pieces of health loaf, et cetera (he has no dietary restrictions). And we have also been known to give him a whole turkey sandwich between meals - and he eats it - and so far it does not impact his appetite for the next meal...

My Dad had an episode, which I believe, was brought on, partially, due to being hungry - and the hospital ran a bunch of tests while he was in Emerg - and they did state that his blood sugar was low...

Have spoken to several other caregivers of people with dementia in general - and they all agreed and reiterated that their loved one, in the early stages, actually seemed to burn more calories and experience an increase in appetite...perhaps their increased frustrations and taking longer to think actually burns uses up energy...and this seems, at times, to be juxtapositioned with caregivers and/or facilities often presuming/assuming that dementia patients are just not hungry and/or are being obstinate.

Believe it is sometimes quickly believed that an ill person has a lesser appetite - as opposed to considering hunger pangs (which we all experience time to time but have the cognition to deal with) may actually be contributing, in part, to the exacerbation of behaviour problems... "unmet needs" which the patient is unable to relay...

So just wanted to give people the heads up - perhaps the problem is more of a concern in Canada than the States... hopefully this is the case and that not too many people experience what we have re food and drink like and my Dad...

Anything that helps anybody with the care of their LO.


Mon Dec 19, 2011 8:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Holding food in mouth
I had a similar experience to yours in the US when my dad was hospitalized a few years ago. He could not do anything other than try to talk and he could move his arms only slightly. There was no way he could have fed himself or given himself a drink. When I arrived at the hosp. I observed someone bringing a tray in, plunking it down in front of him, and no one there to feed him. A nurse was in the room at the time and I asked her why she wasn't feeding him. She said "he can feed himself, can't he?" I said "no, he was brought into the ER about 10 hours ago unable to do ANYTHING. He cannot begin to hold a fork or spoon, sandwich, glass or anything. Didn't you understand what kind of shape he was in when he came up to this floor from the ER?" Her response was "we don't know what's wrong with him and the ER doesn't give us any info. about what is wrong with the patients when they get here via the ER." He could barely talk either, so if I hadn't been there, I don't think he would have gotten any food or drink. I was horrified. I, of course, fed him at that point but made sure that at least one nurse on every shift was aware that he was as helpless as a newborn baby. They had no idea!

After a full day of similar inattention to him or his lack of ADLs, I asked to see the head nurse. I reiterated all the horror stories of the weekend, and things changed drastically! She came in herself and took care of him when she was on duty and made sure the other nurses were doing their jobs.

BTW, she was laid off a few months later. She'd been at that hospital for over 40 years and was a fantastic nurse. So much for U of MD taking over the small town hospital. I guess people starve to death in there now. 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.


Mon Dec 19, 2011 9:39 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Holding food in mouth
Quote:
It is therefore (and I quote) "...highly highly recommended that families and friends attend the patient for at least one meal and preferably two meals a day so that they get enough to eat and drink...".
That is shocking. Not everyone's family can attend on a daily basis [I do but I'm probably the only one on my husband's wing who does].

_________________
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.


Mon Dec 19, 2011 10:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Holding food in mouth
I found that shocking too! When my dad was in the ALF I'd try to be with him 1 - 2 meals a day while I was there, but then I'd come back home for a few weeks. At least his being fed in the ALF wasn't an issue like it was in the hospital and he was well taken care of with eating and drinking. He had a couple of CGs who had gotten so good with him, they'd make him extra food at 8 or 9 pm because he was getting eating times all mixed up. He wouldn't be hungry at dinner then complain he was hungry when they were trying to put him to bed. So they knew what he liked and they'd fix him soup and sandwiches after the kitchen was closed! They were great! 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.


Mon Dec 19, 2011 10:32 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Holding food in mouth
you guys are scaring me…

its okay….we have to talk about this…

I forget to eat….now….

and I am alone…

so even with a hospital or institution staff being paid to take care of me….(feed me)….not necesarily so….

of course I know this is how it is….and how it could be….

it sure makes you think hard about all of this when you are facing it…..the bullseye is on you….

choices….

one of the choices is….not show up….but how?

No. I have to show up….at least for some of it….

But, it surely makes you ask…..why would anyone show up for this….knowing what is coming?

Okay….have to find a way to take care of this…..

Please keep writing about all of this bad stuff…

We have to rewrite the manual….

you do realize, that is what you guys are doing?

Rewriting the manual.

You are helping me write my instruction manual….

The trick is going to be how to make….reading and using the manual….MANDATORY…..

those pesky choices….others have those too….

whew….do I have work to do….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Mon Dec 19, 2011 10:55 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: Holding food in mouth
Please don't let it scare you too much, Craig. If anything, you have an advantage because you are still able to affect the course of your care. In your shoes (and I've thought about this a lot) I would get very serious about selecting, and even moving into, a continuing care community. You have time to carefully choose, maybe even being there at meal and other important times to observe care. Honestly, I suspect it would take a lot of stress away to have selected a community yourself and have the criteria for moves from one level of care to another well understood.


I do observe that budget problems are a primary influence, even in feeding. Fewer aides means each remaining aide has to care for more people and feed more people. So, to get to everyone, they end up feeding in large bites so that they can get one patient fed and move on to others. This is why one of us is there for at least one mealtime each day.

It used to be that I was the only family member that was there and actually fed my LO. But a couple other daughters (of other residents) have caught on and are there almost every day. Unfortunately, we can't help the other residents feed themselves, though we've been sorely tested. I think we've all become fond of our LO's tablemates. All we are allowed to do is encourage them to take another bite. Though, when one of Mom's tablemates has an issue with something on their tray, I do speak up. We daughters also help the staff keep an eye on the other residents, like telling a resident to sit back down in her wheelchair, put her shirt back on or sit down until someone can find her walker. If it is something serious, or an aide needs to do some hands on intervention, we usually say something to the resident loudly enough to get the attention of the staff and then they come running.

Unfortunately, volunteers cannot feed residents. It must be an aide or a nurse. And, though sometimes I see aides taking it easy for a few minutes, I think they have more responsibility than any one aide can handle. I know it helps to have a family member there helping, and even more so if we tell the staff we are there and our LO is OK. They've come to expect one of us there at the evening meal (or weekend dinner) and sometimes call us to check if we are late.

One thing I will mention is that at Mom's SNF, aides are not allowed to force a resident to eat. They can remind, cajole, beg and bargain with them to get them to eat. But if a refusal is final they are supposed to stop trying. This is important to be aware of, especially if your LO has made that critical decision to stop eating and drinking. Of course, policy and rules don't always make it to the dinner table and some of the aides push pretty hard. It's a bit of a delicate balance for them to know just how far to go. That's another reason why it is important to be there and to build relationships with all of the staff.

In a hospital, it isn't quite as easy as it is in an SNF. But I think it is essential to build relationships with the aides who care for your LO. Often, there are aides that are regularly assigned for each group of residents. Getting to know them and finding what works best for everyone works wonders. (They all know that I make a mess of trying to get the diapers they use on Mom, so they know that I will call for help with that. Mom almost always needs the toilet halfway through a meal - when the aides are their busiest. So I take her to her room and get her started and they come as soon as they can to fit the diaper.)

Kate

_________________
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 9:58 am
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