Dementia and Not Eating: Very concerned

Posted by tamarab @tamarab, Jul 9, 2021

Burt refuses help with swallowing. When we brought in a speech therapist to evaluate his eating, he was furious. [A little of that tornado.] And he never wants her to come back.

Meanwhile, he eats almost nothing and won't accept guidance to take smaller bites of his cakes or to slow down. Any set back in eating is an excuse to refuse ever to eat that food again. His ability to chew and swallow any number of favorite foods is dwindling. He says I can't make a boiled egg or scrambled eggs anymore. He won't eat applesauce. He has trouble with cottage cheese.

This needless to say has me very concerned. Any thoughts or suggestions would be greatly appreciated.

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@tamarab I thought you might be interested in an older comment from a member who hasn't been active for some time now, @coloradogirl, as she had experience with her mother in law not eating for a period of time. You can read her comment here: https://connect.mayoclinic.org/discussion/dementia-and-nutrition/?pg=1#comment-285829

I would also like to see if @sueinmn may be able to share her experience with her family member not eating as well.

How long has Burt not been eating well or at all?

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This is one of the most difficult situations caregivers experience with loved ones who have dementia.
It seems like it can happen at any stage and for any reason, is frightening and often infuriating.

First, I will ask, is there anything he will still eat, whether it is nutritious or not?

Second, as I read between the lines, it sounds like there are swallowing issues that he refuses to deal with – all the time, or just beginning?

Finally, is there anyone – medical or not – to whom he will still listen?

Please, let's talk and see if we can uncover a few hints to help you.
Sue

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@sueinmn

This is one of the most difficult situations caregivers experience with loved ones who have dementia.
It seems like it can happen at any stage and for any reason, is frightening and often infuriating.

First, I will ask, is there anything he will still eat, whether it is nutritious or not?

Second, as I read between the lines, it sounds like there are swallowing issues that he refuses to deal with – all the time, or just beginning?

Finally, is there anyone – medical or not – to whom he will still listen?

Please, let's talk and see if we can uncover a few hints to help you.
Sue

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Sue, the swallowing issues started around Thanksgiving. The speech therapist who came to evaluate against Burt's will thought it was more emotional than physical although he does choke and or spit out foods. He still eats a lemon tart with Raspberries removed. Boiled egg yolks have become too thick and scrambled eggs are too mushy. Mashed potatoes are lumpy and annoying. He ate some shredded deli turkey and 1 an 3quarters of a tart yesterday.

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@tamarab

Sue, the swallowing issues started around Thanksgiving. The speech therapist who came to evaluate against Burt's will thought it was more emotional than physical although he does choke and or spit out foods. He still eats a lemon tart with Raspberries removed. Boiled egg yolks have become too thick and scrambled eggs are too mushy. Mashed potatoes are lumpy and annoying. He ate some shredded deli turkey and 1 an 3quarters of a tart yesterday.

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Here was our approach with my Grandma who had Parkinson's and LBD – we let her eat anything she wanted, whenever she wanted, but only gave her a small amount at a time – think 1/4 cup, a few bites. It was not perfect, she had anything but a balanced diet, but it got the food in.

Her favorites were tinned sardines and oysters for a period, then (mixed together) peanut butter and jam on shortbread cookies. Also ice cream, or frozen custard, which is actually quite nutritious. And canned fruit cut in small bites. We also figured out that is someone sat with her and ate the same things as she did, a little more food was eaten.

Interestingly, my daughter was a nurse in a Memory Care, and that was one of their dietary strategies – seeing others eating seemed to spark a recall of food/eating/sociability and was actually one of the best times of day for her residents. They made a special French toast, bread soaked overnight in cream & eggs, then lightly baked. They made 2 flavors to cater to taste – one sprinkled with cocoa mix and the other with cinnamon. A few of her residents ate only that for weeks on end.

My Mom had post-stroke memory & eating issues – we gave her malts made of protein drinks with chocolate ice cream.

Just a few ideas – I apologize if you have already tried them, but I know how frustrating it is to get food in.

Wishing you a calm day!
Sue

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@sueinmn

Here was our approach with my Grandma who had Parkinson's and LBD – we let her eat anything she wanted, whenever she wanted, but only gave her a small amount at a time – think 1/4 cup, a few bites. It was not perfect, she had anything but a balanced diet, but it got the food in.

Her favorites were tinned sardines and oysters for a period, then (mixed together) peanut butter and jam on shortbread cookies. Also ice cream, or frozen custard, which is actually quite nutritious. And canned fruit cut in small bites. We also figured out that is someone sat with her and ate the same things as she did, a little more food was eaten.

Interestingly, my daughter was a nurse in a Memory Care, and that was one of their dietary strategies – seeing others eating seemed to spark a recall of food/eating/sociability and was actually one of the best times of day for her residents. They made a special French toast, bread soaked overnight in cream & eggs, then lightly baked. They made 2 flavors to cater to taste – one sprinkled with cocoa mix and the other with cinnamon. A few of her residents ate only that for weeks on end.

My Mom had post-stroke memory & eating issues – we gave her malts made of protein drinks with chocolate ice cream.

Just a few ideas – I apologize if you have already tried them, but I know how frustrating it is to get food in.

Wishing you a calm day!
Sue

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Thank you, Sue. Don't know that sardines or oysters will fly, but cut up canned fruit might. I will sit and eat with Burt when he feels up to eating. I cut his lemon tarts into quarters so less threatening. He does eat just not enough to not lose weight and I was hoping to fatten him up a bit. He is in early stages with excellent memory especially for grievances and annoyances. Ah well. Yesterday was a big day and major effort for him. Went to new doctor– primary care– and had to charm and flirt with all the staff; also we walked both ways saw some old neighbors etc. Made eating last night rougher than usual. I will keep trying.

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@tamarab

Thank you, Sue. Don't know that sardines or oysters will fly, but cut up canned fruit might. I will sit and eat with Burt when he feels up to eating. I cut his lemon tarts into quarters so less threatening. He does eat just not enough to not lose weight and I was hoping to fatten him up a bit. He is in early stages with excellent memory especially for grievances and annoyances. Ah well. Yesterday was a big day and major effort for him. Went to new doctor– primary care– and had to charm and flirt with all the staff; also we walked both ways saw some old neighbors etc. Made eating last night rougher than usual. I will keep trying.

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You have the right attitude! And to the good, he isn't losing weight, so you must be doing something right.
Do take care of yourself, too – accept any help offered, and take a break if you can.
As to flirting with the staff – my cantankerous Grandad was at his best around nurses – it was so funny!
Sue

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@sueinmn

You have the right attitude! And to the good, he isn't losing weight, so you must be doing something right.
Do take care of yourself, too – accept any help offered, and take a break if you can.
As to flirting with the staff – my cantankerous Grandad was at his best around nurses – it was so funny!
Sue

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He is a tremendous flirt. And there are some funny and disturbing upshots there. As for the food: Better today. He rediscovered hard boiled eggs. Unfortunately when he picks up a new "interest" he drops the other foods he was liking.

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@tamarab

He is a tremendous flirt. And there are some funny and disturbing upshots there. As for the food: Better today. He rediscovered hard boiled eggs. Unfortunately when he picks up a new "interest" he drops the other foods he was liking.

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And yes, thank you. I have become very outgoing in asking for help. My 16 hours out each week are a big help too.

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@amandajro

@tamarab I thought you might be interested in an older comment from a member who hasn't been active for some time now, @coloradogirl, as she had experience with her mother in law not eating for a period of time. You can read her comment here: https://connect.mayoclinic.org/discussion/dementia-and-nutrition/?pg=1#comment-285829

I would also like to see if @sueinmn may be able to share her experience with her family member not eating as well.

How long has Burt not been eating well or at all?

Jump to this post

Amanda the "old" post was helpful as was Sue. Thank you. And Burt is doing better with food today. He rediscovered hard boiled eggs. Unfortunately when he picks up a new "interest" he drops the other foods he wss liking.

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@tamarab

Amanda the "old" post was helpful as was Sue. Thank you. And Burt is doing better with food today. He rediscovered hard boiled eggs. Unfortunately when he picks up a new "interest" he drops the other foods he wss liking.

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@tamarab I am glad Sue and I could be of help and that Burt is doing better today. Hard boiled eggs are fabulous so that is great. In keeping with the theme of a rotating food calendar, perhaps this would also be of interest when you are struggling to think of new/other options. There is even a PDF handout you can download.

– Easy to Chew and Swallow Diet:
http://www.healthsystem.virginia.edu/docs/per/easy-to-chew-and-swallow-diet/handout_view_patient/@@getDocument
Please stick around and share Burt's food journey with us and so other members can find support from you! Will you share if you try anything new on the attached food list as well?

REPLY
@amandajro

@tamarab I am glad Sue and I could be of help and that Burt is doing better today. Hard boiled eggs are fabulous so that is great. In keeping with the theme of a rotating food calendar, perhaps this would also be of interest when you are struggling to think of new/other options. There is even a PDF handout you can download.

– Easy to Chew and Swallow Diet:
http://www.healthsystem.virginia.edu/docs/per/easy-to-chew-and-swallow-diet/handout_view_patient/@@getDocument
Please stick around and share Burt's food journey with us and so other members can find support from you! Will you share if you try anything new on the attached food list as well?

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Sure. He was eating shredded deli turkey but refuses it now. Did I mention that he has set up a schedule for me to also get him madeleines twice a week and two lemon tarts for the other 2 days when his carer is with him. He works hard to set up these schedules for himself.

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@tamarab

Sure. He was eating shredded deli turkey but refuses it now. Did I mention that he has set up a schedule for me to also get him madeleines twice a week and two lemon tarts for the other 2 days when his carer is with him. He works hard to set up these schedules for himself.

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Thank you, Amanda for the list.

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