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 Frustrncated 
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Frustrncated
How do you get someone with LBD to eat? I have tried everything in my bag of tricks to get my husband to eat (i.e., serving smaller portions, giving him snacks, giving him finger foods), but nothing is working. He just sits there with his quarter sandwich in his hand and doesn't eat it. The same holds true for drinking fluids. I prompt and prompt and prompt and prompt, with little to any results. My gosh, he's already lost 98 pounds since last November. He can't afford to lose much more. I've research Megace and won't let his doctor prescribe it because of the potential side effects. His PCP also suggested Remeron, which is an antidepressant that increases the appetite and causes the person to gain weight, but this is not an option either. My husband is 6' 2" and currently weighs 240 lbs, so I don't think he needs to gain any weight. He just needs to eat and drink to sustain his life....but how do I get him to do this? Any suggestions?

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Beth


Sat Jul 28, 2012 6:29 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Frustrncated
I don't recall how old your husband is, but I have the same issue with my 88 year old mother. She just doesn't want to eat regular table food. The NH and I have tried everything as far as foods go (I also refuse to have her put on "appetite stimulants," which often don't work that well and have terrible side effects).

I am told that elderly folks lose their sense of taste and smell, and the last taste to go is sweet. And is that ever true! The only things my mother will eat willingly are ice cream and candy, preferably chocolates. The NH makes up these heavy duty ice cream shakes with some kind of calorie additive that makes each one about 800 calories, and usually she will eat at least some of it.

I take her a bunch of candy every week and it's always gone by the time I bring more. (The doctor said at this point, any calorie is a good calorie!) But she has lost 50+ pounds anyway, with much of that in the last six months.

It's really frustrating and sad, but it seems to be pretty common with LBD. Maybe if you offered him ice cream he would eat that?

Julianne


Sat Jul 28, 2012 6:41 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3125
Location: Vermont
Post Re: Frustrncated
Beth - I can't remember if he is receiving hospice services or not. I'm thinking no, but with that amount of weight loss, if it hasn't been intentional, it may be time to ask for a hospice evaluation. In the last 6 months or so, many people greatly reduce their food intake because their bodies just don't need it and it actually is stressful to their bodies to try to metabolize meds and foods. Does his dr. think he may be approaching or in the final stage? Does he sleep most of the day and night? Lots of sleeping, not eating and big weight loss would be signs that his dr. should know about if the dr. isn't already aware. Take care, it's very stressful and painful being a CG and seeing your LO make these changes. 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.


Sat Jul 28, 2012 9:05 pm
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: Frustrncated
Julianne, my husband is 73. Lynn, my husband's appetite fluctuates, but it appears at times that he just doesn't understand what to do with the food in his hands. So what I've been doing lately is feeding him and holding the cup for him as he drinks. And he hasn't been sleeping a lot during the day, just at night. And yes, his doctor knows how much weight he's lost since last November, but I don't think any of his doctors are concerned about his weight loss because he was morbidly obese before he was diagnosed with LBD. In fact his pulmonologist in Florida recommended after his sleep study that he go down to 190 lbs, which he is still 50 lbs from getting to. He is already dehydrated. I just don't want him to become malnourished or sick. This is so frustrating for me, because I feel so powerless. I want the man I married back. The man I'm living with right now is a stranger and I feel so alone. I want a life.

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Beth


Sat Jul 28, 2012 10:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3125
Location: Vermont
Post Re: Frustrncated
It is a heartbreaking situation to see our LOs traveling down this path, and trying to manage the ever-changing and very challenging symptoms is exhausting. I hope you have lots of support and help with friends and family coming in.
If he still needs to lose 50 lb. but eat healthily, can his physician ask a registered dietician to get involved? Would he eat things like diet puddings, fruit smoothies made with no fat yogurt and lots of fruit? A few years ago there was quite a bit of discussion on here about making smoothies and milkshakes. A lot of healthy things can be "sneaked" into smoothies and shakes.
Sending a gigantic hug. It is so, so hard. 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 Jul 29, 2012 7:09 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Frustrncated
Beth,
I am sorry you feel so powerless, this disease will do that to families but you can make the best of each day and the man you married sadly is not the same person because LBD has taken over, not too many things you can do to change the situation but helping him to eat is good if you think he isn't sure what to do with the food you are probably right so helping him is the way to go. I wish things could be different for you!

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Irene Selak


Sun Jul 29, 2012 3:00 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: Frustrncated
Hi, Beth. Sounds like you're having a lot of fun.

Getting someone to eat is tough. One day something works and the next day it doesn't.

Have you tried mincing or grinding the tougher foods and then moistening them with gravy or juice? Maybe he is just having trouble with swallowing so doesn't want to try. I often thought that, when Mom was in the SNF, there should have been someone going around every hour with some 4-6 oz cups of water or other liquid, handing each resident a cup of what was appropriate for that person and, if necessary, watching the resident drink. If swallowing is getting harder, maybe thickened water, coffee, juice, etc. would help. You should be able to get the thickener at any medical supply or drugstore. Mom didn't need it often, but her preferences did change from coffee, water and cranberry juice to milk, V8 and grape juice (more consistency to each of these liquids). They were easier for her to swallow.

Another thing we did, even before the nursing home, was recognize that Mom was in an end of life cycle, so it wasn't critical for all of her foods to be "healthy." Sure, she got a regular meal - meat, veggie, starch - but she also got lots of treats. She had a real sweet tooth. So we gave her ice cream whenever she wanted it. We got her special treats at fancy bakeries. All sorts of stuff. So what if she had diabetes. At the end of life, why take such pains to extend it? It's the one time a person can forget about maintaining a svelte figure.

You might also try small meals frequently served. Always with something tempting on the plate. Maybe his stomach can't handle a lot of food at one time and he needs it spread out.

These are just suggestions and you probably tried most of them. But I hope I've given you something that helps.

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 Jul 31, 2012 1:31 pm
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