Not Eating - Does anyone have a strategy?

Comrade

My wife - FTD - has decided not to eat or says, it doesn't take good. Of course, the things I make are known favorites.

It worries me and know her perceptions of food are changing. However, she needs to eat and I don't count a single bite here or there as a meal.

Does anyone have a strategy that has worked?

Rick4407

Hello Comrade,  

Sometimes people switch temporarily to the nutrition supplement drinks, ensure, etc.  It may also help if she "helps" in the preparation: setting the table, stirring things, set out salt/pepper, etc.   Making the meal a "joint process" may lead to her eating more of it.   If it continues for long I would consult with your neurologist.   Sorry not much help, Rick  

harshedbuzz

Tastes change.

At a certain point, it becomes about getting calories and hydration in. 

Predementia, dad ate a super healthy diet- grilled fish or chicken and a huge salad most meals. But as his dementia progressed his preferences did a 180. In addition to the typical preference for sweets, he got into comfort foods like meatloaf and gravy and fast foods like chicken strips and fries.

Hb

June45

Comrade,

How far along is your wife in her FTD?  I do not have a medical background but I will share my experience in caring for my father, mother and now my husband.  In all cases the hospice nurses told me that refusal to eat can be a signal of progression toward end of life.  But that said, in your wife's case, it is probably something else entirely.  Do what Rick suggested and give her nutritional supplement drinks and consult a doctor soon if her refusal to eat continues.

P.S. And harshedbuzz gives good advice.  Try comfort foods...just to get calories in her.

June45

Comrade,

There is some else that came to mind, probably not the case but... One of caregivers on this forum, had Covid and if I remember this correctly, the only symptom she had was a loss of smell and taste.  That can definitely affect the appetite and make food taste not so good. If there is any possibility that your wife has been exposed over the holidays, that is something to consider.

Comrade

My wife is 3 years in to her diagnosis and think the most "favored" answer is 1. She is bored with eating the same things. 2. and most likely, her sense of taste has changed.

Jeff86

AD has significantly affected my DW’s food likes and dislikes, so making adjustments has been necessary.  Where she used to prefer savory foods, she now likes sweets.  That’s not so great.  Pasta no longer suits her, either.  On the plus side, she’ll now eat salmon and other fish, which she previously didn’t care for.

She eats pretty well at breakfast and ok at lunch.  Dinner is hit or miss.  She does better, I think, with less dense foods.  And I give her a couple of Ensures daily, so I know she’s getting protein.  

Comrade

Hi and thank you for the feedback. I really believe that Sue's FTD is affecting her sense of taste and textures.

I mentioned pizza tonight because it is easy to eat, sweet and can be held in one's hand.

I worry that she is getting uncomfortable holding utensils and am happy an occupational therapist is coming this week.

Comrade

Thank you for reply and yes, I have been concerned about swallowing. I watch her "side eyed" and monitor if she is having issues.

From the gigantic Trazedone pills she takes to sleep, I am not too concerned. I couldn't even swallow those footballs.

(:

Gig Harbor

Sweet tastes are often more popular. Can you make her eggnog with a spoonful of peanut butter blended in it? She would get enough protein with that. It takes quite awhile for a poor diet to have physical effects so I would just give her what she wants. If you can get her to drink milkshakes you can add fruits and vegetables and protein powder. Try leaving a small dish with chocolate and another with blueberries. Let her see you try some of each and she may follow your example. Cut up PB and J sandwich is small pieces and set them out on a red plate so she can see them easily. Hopefully something will attract her and maybe if you don’t ask her to eat she then might try it on her own.

Stuck in the middle

Smoothies are your friend in this situation.  There are many recipes on the internet, and you can mix in kale and such to slip nutrition to her.  Not a bad way to administer meds to LOs either.  Just make it sweet with berries, honey etc. and it'll taste good.

A person only tastes sweet, sour, salt, and bitter.  All the rest is smell.  If the sense of smell goes, apples and onions taste alike and spices like garlic are undetectable.  That's why food is so boring and why sweet is so popular.

My wife is still eating well, but I have a blender and a plan to make chocolate malt flavored smoothies when/if the time comes.

Lills

My DH has FTD, but is now in late-stage.  I do remember the drastic changes in food choices.  FTD patients have strong cravings for sugary foods.  He couldn't get enough ice cream and chocolate, even though he rarely ate sweets before his illness.  He would drink gallons of orange juice and milk and eat an entire bag of Clementine oranges, if allowed. The first thing he abruptly stopped was his cup of morning coffee, even though for 44+ years, he drank a cup every morning.  He stopped eating bacon, then beef and all meat.  Someone told me that beef tasted like metal to dementia patients.  

As others have said, I would offer Ensure and anything she would like to eat!  

Comrade

YES!

DW when she does eat, prefers processed foods that are loaded with sugar and sodium.

This is tough, because I want to keep her healthy physically.

Natural sugars in fruits don't seem to work anymore.

Comrade

Rick, 

I appreciate your response and have an appointment this week with her doctor.

Everyday likes and dislikes are changing and want to insure her physical well being.

Barry

Paris20

My husband has always had a sweet tooth but now it’s out of control. I try to keep the sweets moderate because they kill his already-dwindling appetite. He won’t drink Ensure but he will eat Ensure pudding. You can also buy protein powder to add to the pudding in small increments. I no longer ask him what he wants to eat because he will say he wants nothing. Either I prepare something he loves or I make him exactly what I am eating. If he sees me eating, he’ll follow. I don’t worry about repetition because he cannot remember what he ate. Last week he had French toast every day.

Comrade

Oh gosh, I wish she would follow what I am eating.

I never heard of Ensure pudding. That's and idea.

Thanks!

Jo C.

This is one of those challenges that requires us to go into "detective" mode.   For some persons, the meds they take can cause food to taste noxious or metallic tasting.  That would have to be ruled out and one can do some online research regarding this possibility for each med. Sometimes there is a delusional aspect which can cause resistance to eating until such time the low level delusion can be quelled or it passes.  FTD does indeed often carry food issues within the disease process; that is quite common.

My mother had one of the behavioral variants of FTD and many things became complex as the disease evolved.  Some persons with FTD will overeat like someone is paying them to do it; the compulsion is a driving force and overeating to a huge amount can cause signifcant weight gain. Some will eat only one or two foods or one type of food;  some will not want to eat, and some like my mother demand within their delusional thinking to control all things food.

She got to a point that for her, the only accepted "meal" would be one small lettuce leaf and a cup of green tea once or twice a day.  Of course that was a significant problem issue.  It did help somewhat to have no actual sitting at the table for meals, but instead to have soft finger foods in small amounts when watching TV or whatever. Finger sandwiches, cream cheese on small cuts of roll; bits of soft fruit, small cubes of cheese, etc.  Sometimes Ensure mixed with vanilla ice cream in small sized shakes would help.  However, it was always touch and go and got worse until she was seen by her dementia specialist.  She had been having other behavioral issues that were connected to delusional thinking (rigid false beliefs) as was her food resistance.  She was treated with medication for the delusion driven behaviors and that made all the difference and she began to eat again, but  I had to be cautious about the type of food as she was particular.

In the midst of  her food control issues, at one point she suddenly came to deeply believe that all the food in the refrigerator was rotten despite it being fresh and again, would not eat.  Nothing would convince her and it is of no help whatsoever to point out facts or argue or try to inform and cajole.  That only causes the person with dementia to dig their heels in harder.  It became necessary to pull the "therapeutic fib" tool out off the Caregiver's Toolbox.

She ranted on about the rotten food.  I told her in good spirit that I would throw it away and get to the market to buy new and fresh.  In this light, I took market bags and went to the refrigerator where I removed some fruit, vegetables, some cheese,  a quart of milk and a few other items and placed them in the bags.

I got my coat on, grabbed my purse, took the bags to, "go to the trash," and "went to the market."  What I did was to go outside and wait 20 to 30 minutes.  Then I re-entered the house carrying the same bags with the same items . . . I walked briskly to the refrigerator while talking non-stop telling her what wonderful fresh fruit and vegetables the store had and that they also had a great sale and we saved SO much money. Into the refrigerator went everything that had already been there and she was happy.  Puff, puff, pant, pant.  A little fuss and bother, but far less than if we had to go through the delusional dyamics every day, several times a day along with refusal to eat.

Just one person's story; we all have them.  When you see the specialist, if you cannot speak about her in front of her without causing a problem, you can always write a detailed but succinct memo listing the problem issues and changes to the doctor and get it to him/her a few days prior to the appointment.  I used to do this for each physician at each appointment as my LO was irate if I discussed anything related to her condition in front of her.  I also carried a copy of the  memo with me and while in waiting mode to see the doctor, I excused myself to "use the restroom," and checked to see if the doctor had seen the memo. If so; fine. If not, I had the copy.

These times eventually do pass, but then it also means that the disease has advanced.  Most important of all, especially if the person is resisting food is to not push at them or argue or insist.  With FTD, so much of the memory is retained until the end stage of the disease, but the need to control is often there, and when delusions begin it can be quite subtle and make a difference in what is being accepted or not accepted and sometimes we do not know at the time that a delusion is involved.   My usual way of being before I became more informed would be to point out facts, to argue a point and try to change the behavior by being rational; all guaranteed to lead me to failure until I learned better.  When first using the fiblets or therapeutic fibs when necessary was difficult for me as I value truth.   However; when I saw how well a fiblet could work and keep my LO from meltdowns and make a difference without a fuss, I soon learned that such a tool was a kindness to my LO and that was of great value.

J.

Comrade

I have totally opposed to using the "white lie" strategy, since it felt too much like lying. However, as DW's disease progresses, survival is the name of the game.

Whatever works has become my theme and should probably find an accompanying song.

DW is not stupid and does recognize changes in my tone or behavior. However, she still trust me and don't want to break that confidence.

I am finding out more and more, that the progression is robbing her of confidence and perceptions.

Being direct has strengths, but I find myself sugar-coating or stretching the truth for a better outcome.

Jo C.

Understandable.  When I very first told an untruth to my Loved One, it felt horrible.  I felt  as though the earth was going to open and swallow me up for such a betrayal.  I hung on far too long, explaining, using logic, trying to make sense, glued to my own personal ethics, using my own will expecting what?  If one keeps doing the same thing the same way for the same problem issues, what changes?  The anxiety, the upsets, the agitation were the responses so much of the time.  As said, once a certain point was reached in the disease process, being logical and explaining accomplished the opposite effect from what was needed.  I began to realize that sticking to my own internal value feelings was not helping, but was hindering and also, in a way hurting my LO.   Well . . . . there we were, no options left and me needing to change myself which was the key to everything else.  

It was absolutely astonishing to me when I did use a fib the first time and then the first few times that it was necessary to do so, to see the results.  My LO, rather than railing against a need, rather than having a result that caused anxiety, irritability or upset agitation, it was all calm and smooth waters.  What???  Okay.   At that point as said before, I realized that the necessity of a fib was an absolute kindness to my LO.  It kept her from anxiety, agitation, meltdowns, etc., none of which were good for her and such negative results could last for a long time.  With the fibs when necessary,  calm and peace were the results; she already had enough upset within herself from the disease and if this was a way to help, so be it.  When I became enlightened and saw the kindly results by using a fiblet when necessary, I never questioned using that dynamic again when it was necessary to do so.

It sometimes became necessary to fib to get to doctor's appointments, to get hygiene accomplished, to help with the food problem situation; later, to actually address any changes whatsoever because as the FTD evolved and increased its hold, so did the behaviors which eventually did not tolerate the simplest changes in the smallest things.

Most of us begin this journey as though we have been parachuted from a plane in the darkness of night, not knowing which country we have landed in, we do not speak the language, we do not have any currency, and we are supposed to get to a specific place without a map, but we don't know which place or if we did, how to get there.  There is a learning curve for all of us, most of us flying by the seat of our pants until we learn and become educated to the new ways of being.  Emotion and logic do not live on the same plain of existence which can initially cause a lot of angst. 

As for the "therapeutic fibs," I do like a quote by Robert Brault, "Today I bent the truth to be kind, and I have no regret, for I am far surer of what is kind than of what is true."

And so it goes . . . we are the ones to adjust because we can; our LOs are no longer able to do so as their ability to process things, to use reason and judgment has become highly compromised as their brains have become damaged by what dementia has wrought.

J.