96yr old dad with Lewey Body Dementia doesn't want to eat! What to do?

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96yr old dad with Lewey Body Dementia doesn't want to eat! What to do?

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I'm Dad's full-time 24/7 caregiver (I'm living temp with him in his home). He will be 96 in a few weeks. Pretty healthy otherwise for a 96yr old but has moderate & worsening lewey body dementia. I can see him decline almost weekly. There's soooo much going on here, but my main issue these days with him is that he's loosing his appetite. I battle with him more and more to get him to eat. He's eating breakfast well but the rest of the day is a battle. If I force the issue and make his meal and place it for him to eat he'll say ok and 1/2 later I'll check on him and he's shoved his napkins in the food. Oh Dear God - what to do. I'm ready to scream! He's still pretty active, goes outside and tinkers with whatever just to keep busy I guess. Any suggestions! Or should I just relax and let it be? What have you all done when this happens! Thanks in advance!

Alzheimer's & Dementia Dementia Behaviors Diet & Nutrition Lewy Body Dementia

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Perhaps let it be. At 96, something in his brain might be signaling that it's time to back off the nutrition. It's part of the dying process and it's okay.
Maybe call hospice and ask them if it's time for palliative care.

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Thank you! It's good hearing it from someone else! I appreciate it. Thanks

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Maybe time for Hospice? I usually try milkshakes when appetite goes. Gets calories in him. Make breakfast hearty for now.

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Yes, thank you! I give him a protein shake (banana flavor for his sweet tooth) with his breakfast (Cream of Wheat) (it's a weight gainer) 1250 calories - so at least he's not loosing weight at this point. He has dysphagia and can't swallow too well (only when he wants to like cake) so he's been on pureed foods for about 2 years now. Pallative care contacted me a few months back but I declined the help but now... I think I could use some help with him. Seems to be declining faster now. Thank you for you input - I appreciate it.

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Mamacrow, since your Dad will eat breakfast, try serving the same items for lunch and dinner.

I assume your Dad isn't physically active [like a lot of walking], if no, maybe in his mind he feels he is getting enough calories at breakfast, and that eating lunch/dinner makes him feel too full/bloated. And lets not forget, as we age our taste buds go on strike, thus some of our favorite foods no longer taste good.

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Yes, I've done that! He won't each much but loves Cream of Wheat with cinnamon & brown sugar. So lately I let him have it for Breakfast and Dinner (he doesn't eat lunch) that stopped about 6 months ago. So now he's pulling back from dinner as well. So in the AM I give him a weight gainer protein shake - lots of protein in it & calories - and his Cream of Wheat and a banana. He does well with that. But dinner... It's all I can do to get his to eat a small bowl of Cream of Wheat and a serving of applesauce. And if he won't eat that I have him drink and Ensure. I don't know! Soon it will just be breakfast or nothing at all. He says he's not hungry. So maybe he's not. I'll just have to do my best. He is almost 96yrs old afterall! Thanks again!

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Yes. You should relax and let this be.
We all die.
At the point we get Lewy's, if your Dad is at all like my brother who at 85 got the same diagnosis, he is well ready to die.

The truth is that elders need little to nothing to live, to survive.

I would in no way attempt to change what my father ate, other than to keep it easy to swallow as swallow does become a problem for those with Lewy's. And I would let him eat as much as he liked of all the things he likes for the duration.

Now your Dad is 96 I think you should prepare yourself that he will soon be leaving you, and I think that you should make his exit as pleasant and easy for him as you are able.

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Thank you! I'm doing my best! I guess it's the transition of watching him eating less & less that's getting to me a bit. He does have longevity in his family - His oldest sister passed last year at 104 but she was a very healthy woman - We haven't had anyone in our family with LBD. Breathe I tell myself just breathe! Thanks again! :-)

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People are still people. When my wife chose not eat, she typically did so by clamping her mouth shut. Occasionally though she’d had difficulty swallowing. Eventually all her foods were purées. Even so, refusing to accept a spoonful of food happened. My success with her was based in …. patience, finding alternative foods, diversions, and time. I also supplemented normal foods with Ensure now and then. Each meal took anywhere from 20 minutes to 2 hours. I found no easy solution, but was relatively successful in getting her nutrition up until the very end.

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Thank you! Dad isn't clamping his mouth shut yet lolol but he just says "No, no, no" I'm not hungry!" (He can get very grumpy!) But tonight I offered him an ensure instead of his dinner and he went along with it! Maybe just to get rid of me lol I'm not giving up. Dad has had dysphagia for a couple of years now - so everything has to be pureed! He still loves sweets though - so I'm going to try berry smoothies using the protein powder - at least that will get some calories in him and protein! Thank you! :-)

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Thinking outside of the box... I have acid-reflex but it doesn't bother me after breakfast. It does bother me after lunch and after dinner. I love bananas but it does a number on me hours later, which is surprising as one doesn't think acid-reflex from bananas but it can trigger in some people.

What helps me is having a Tums before lunch and dinner. I don't know if your Dad could try a Tums due to his swallowing.

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Hmmm - You might be on to something there! He hasn't complained about that but I personally get acid reflux from bananas lol - duh! I'll ask him if he needs a tums - Thank you for the suggestion! :-)

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My mom was never a big eater. She was always concerned about her figure. Ironically, she was a fabulous cook who served delicious meals.

When Mom became older she barely ate anything. She said that she wasn’t hungry. She ate a little bit of food because she knew that she had to. Her doctor didn’t want her to lose any more weight.

In spite of her tiny frame, she lived to be 95 years old. She had Parkinson’s disease and developed dementia towards the end of her life.

Mom did better when I served her food on small plates. She freaked out if she saw a normal sized portion of food in front of her, claiming that she couldn’t possibly eat that much food at once.

I would be able to get nutrients in her also by making healthy smoothies. There are lots of different recipes online that you can try.

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Thank you! I'll try making some berry smoothies with the protein powder! He still likes sweets so that should work well. Thank you for the suggestion!
:-)

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My mom is having swallowing problems so I've gone to soft foods only. She loves ice cream and I found the easiest way for her to eat it is to hand her a Klondike bar. She can hold it and eat it and not have to mess with a bowl and a spoon. Silverware has also become difficult.

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I did the same thing with ice cream for my mom because eating with utensils became a problem for my mom when her Parkinson’s disease progressed to the latter stages.

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Hospice prescribed my dad some cbd, which made his appetite perk up.

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Thank you. My Son suggested this. I'm going to look into it. I'm wondering if that might help the hullucinations as well? thank you much appreciated.

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Maybe relax on the idea of formal meals. Offer him "snacks" - several small meals - throughout the day. Opt for protein and produce (fruit or veggies) since they have everything he needs - protein, carbs, fats, vitamins and minerals. Also try any of the high protein "shakes." In the hospital where I work, 5 high protein Ensure drinks (full size not the minis) is the same as 3 good meals a day.

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Thank you! Yes, this is what I'm doing now to supplement the non-meal times - he loves his banana protein drinks and I just bought a berry smoothie protein drink mix that I'm going to try tomorrow. I may try it myself as well hahaha. Thanks again!

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Is this a change in behavior over a relatively short period of time or has the unwillingness to eat been gradual over months or years? Sometimes elders use food refusal as a way to establish their independence or to reassert their personhood, this often happens when they’ve lost the ability to do much for themselves. Some elders also refuse food when they are ready to give up. I’d like to say there is a correlation to those who have DNRs and those who don’t, but I haven’t found that to be connected.
If it is a sudden change, make sure to pay attention to dental health. A simple cavity or some change in dentures can make eating tough and they may not have the ability/awareness to relate that to you.

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Thank you! No this change of diet is fairly new. As the LBD progresses he seems to sleep more and eat less. He is a very independent man but has learned in this past year to let me help him. That was a miracle. lol Dad has full dentures (that he won't wear) Ha! He just had his full physical a month ago - All his blood tests came back perfect - He's in great health other than the LBD. So, It could be he's depressed and tired of forgetting why he just went outside - I can see the frustration daily. So he spends more time in bed now watching old westerns. And that's ok too. Oh, and Dad does have a DNR. He had that put in place through his Trust years ago before the LBD began. His Doctor asked him if he had one just last month so I pulled a copy from the trust documents and sent it over to the doctor. Dad has never been a believer of intubation or any of that. I agree with him on that one! Thanks again for you comment. much appreciated.

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My 85 year old Dad with Alzheimer’s has lost quite a bit of weight since moving to Assisted Living. Doesn’t like the food, even the smell bothers him, he can get grumpy too. Lol!

He loves cereal and milk and does well with fresh fruit, like watermelon and bananas. We’ve just decided to supplement the food from AL with a few groceries like sandwich food.

He now seems to always want ice cream! Any kind. It’s funny and sweet. He’s like a big kid. But he’s 85, he lost weight he needed to lose and now needs to gain or at least maintain. If he wants ice cream, we get it. It brings him joy! I tease him…but he
his attitude is “ I’m 85 and if I want ice cream I can have it!” And I agree.

24/7 care for your Dad is a precious gift to him. Do take good care of yourself too!

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Thank you! Sweets is where it's at for Dad. The Doc says that the sweet sense is one of the last to go - He said to let him enjoy as much sweets as he likes. At 96 I guess he's earned it! Thank you again :-)

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If he likes breakfast how about adding a few nutritious items like a few flax seeds, chia seeds, sesame seeds etc. Not too many at the same time. . Juicing veggies is also an easy way to get nutrients into the body. Small quantities.

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Thank you for your great suggestions. It all helps. Thanks again!

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My mother is 91 with moderate to severe dementia along with other significant medical conditions. She’s now in AL with hospice palliative care. I don’t get worried about what she eats. Whatever she wants is perfectly fine. Lately it’s Cheerios, chicken noodle soup and ice cream and normally not all of that in one day. We cannot and should not pressure them to eat. They’ll eat however much feels right. It is very hard to watch them decline and I wish you comfort and peace as you go through this.

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Thank you - This forum is a lifesaver. I've been feeling so guilty with him not eating full meals - Now I see form all your comments just how normal this all is. Thank you again - very much appreciated.

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Dear MamaCrow,
When my dad was in Rehab, he also wouldn't really eat, I thought he was going to just die. The doctor's gave him some kind of appetite stimulant (I'm sorry can't remember name). Even though he didn't eat a lot it did help and he said he felt more like eating on it.
So get to the doctor and get an appetite stimulant!
Best Wishes!

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Thank you for your kind suggestions! Very much appreciated. :-)

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My MIL lived for a YEAR on less than 500 calories per day. Many days it was only a cup of coffee with 3 tablespoons of BOOST in it. And that's ALL she'd eat/drink.

We were told she'd die within 3 weeks at that level of starvation, but she lasted another year.

Nobody forced her to eat anything, ever. Once in a great while she'd ask for a milkshake, but those shakes from McDonalds are not really eating 'healthy.'

MIL's CG's (the kids) were told not to push food at her, and they didn't. I cleaned out her fridge after she died and all that was in there was Diet Coke and some rotted hardboiled eggs. Oh, and mustard.

I know it seems 'mean' to not be able to get your LO to eat, but at some stage of the game, it's just not a priority for them. Leave him be. Just try to keep him hydrated and that's probably the best you can do.

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Agree. If I (87) should decide I don't want to eat anymore, I definitely hope that will be respected. It will likely be my initiation/iteration of VSED. I certainly do not want nutrition forced on me and have made that clear in my healthcare directive/living will.

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Oh dear friend,
As the body winds down the elder has less and less appetite. It's a natural and common occurrence.
Try to stop the battles and let him live as he wants. Eating what he wants. The hardest part is realizing that our days and his, are limited and this is his time to begin those final days and months. God bless you as you love him each day more and more.

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Thank you so much! I appreciate the Blessings :-)

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Some great suggestions here - thank you! My mom is 95 with dementia, she has stopped wanting to eat too. Sounds like the cream of wheat is better than what we are doing, and I’m going to try it, but she will eat cereal so we add crushed almonds, add a little whey and serve with a vitamin D milk/vanilla protein drink mix. We add blueberries and bananas. She has very few teeth (she won’t wear her bridge and is now non-compliant at the dentist/doctor offices) which complicates things so we eat a lot of PB&J’s, tune salad, chicken salad and egg salad sandwiches. If he likes ice cream, there are protein ice creams you can try. We try to make every waking moment one with joy, but It is also clear that she is ready to leave us. The best we can do is make our best faith effort to give her the best life possible and embrace the inevitable. Sounds like you are doing just that.

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Helpful. Thank you. We are at this place right now too. He just turned 94. Eating less. Sleeping more. I’m trying to be present and still maintain my own life and health.

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Taste and smell diminish with age, particularly with dementia, so food doesn’t have as much appeal as it did before. Eating is such a primal activity that it’s hard to see a loved one not want to eat. At this age he doesn’t have the same nutritional needs we do. Let him eat what he wants and when.

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Thank you - I'm working on it! Thanks again. So many great suggestions here. Really appreciated!

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Try keeping small snacks of his old favorites in bowls around where he sits. Potato chips, pretzel crisps, if he has teeth nuts and Peanut m&m's are both good. Avoid wrapped foods. The baking aisle will often have small peanut butter cups or snickers bites for cookies. Have you tried jello with fruit?

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Thank you! Yes I do keep a good supply of mango applesauce and puddings (he loves sweets) and of course his butterscotch hard candy. He has dysphagia so he can't swallow anything solid anymore - but soft bananas. So all his food and snacks are pureed. Thank you again!

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Stop battling. This negatively affects both of you - and negates your intention for him to be as calm as possible (which affects his emotional and physical well-being). Shift to a place of gratitude that he still 'goes outside and tinkers with whatever ..." This is huge. He is as present as he can be. Be grateful for these moments he finds joy or engagement in life.

Instead of screaming, shift that energy and emotion to being present with him, regardless of what he is eating or not eating. Do not let these moments 'pass you by' by being consumed with what he is eating/not eating. You first need to understand why you feel as you do; why you are so adamant that he eats as you feel he needs.

You do not mention MD recommendations.
What does his MD say about his eating behavior?

While not the same situation, my client (104 years old) ate a fairly hearty breakfast 'first meal of the day' (which I prepared) and didn't eat much the rest of the day. While my client was 8 years older than your dad, it is important to realize that the digestive system slows down - as does everything else. Incidentally, she LOVED egg nog which was in the stores at the time. I gave her a large glass of it to start with realizing that if she didn't eat much else, she got a wallop of calories and enjoyment. She then also ate eggs, salmon, fruit, etc.

As you are concerned with him eating (enough), I would focus on bullet drinks (ie., blender smoothies) as then lots of vitamins-minerals-supplements / food can be added, and even whatever he may really like (chocolate? caramel? cinnamon? fruit?). Try combinations and see how it goes. For my client, she liked rice pudding and other high calorie 'puddings' or desserts (i.e., Belgian chocolate 'pudding'). Bananas are excellent as they add texture and most people like them (in addition to being healthy and easy to digest).

I would focus on educating yourself as to what MD says he needs and take it from there. Loss of appetite certainly has to do with depression, 'ready to go'.
It isn't cut and dry.

Be aware of your focus / reasoning and decisions based on your desire to 'keep him going' vs what he needs to do / what is a natural process. Understand your motives, sadness / grief. This is difficult and emotions are mixed with fear and wanting him to be here with you as long as possible, and you are focusing on diet (in this writing) to keep him alive.

Get the support you need, perhaps join a support group.

Gena / Touch Matters

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You're right! His doctors said to expect all of this and to bring in pallative care - which I declined 6 months ago because I thought I could handle it. But I think because I didn't have the proper time to grieve the unexpected death of my husband (he passed away last March) I'm just exhausted - so I think I'll let the doctor know that I do need help now. Thank you for your great suggestions. I'm reading everyone's comments - they are all so helpful. Thank you.

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From your responses, it sounds like your brain knows but your heart wasn’t ready. I’ll just echo what everyone else said so you have one more cheerleader to help your heart get there. He can survive a long time on just breakfast but I’d keep healthy snacks around. My mom likes this nut and dried fruit mix so I let her have all she wants of it and keep it where she can serve herself. With his swallowing issues, you may not be able to do that but if there is something you can keep handy, maybe he will eat it in the afternoons. You are doing right but I, too, believe it is time to let him stop eating for the most part. I think if he eats breakfast, he will do just great.

my best to you as you face these last stages with him.

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Thank you and you are sooo right! I remember when I was caring for my Grandmother many years ago - she passed from lung cancer (never smoked a day in her life) Once we knew the treatment didn't work and it had spread - my heart clicked and instead of praying for her to get well I prayed for her to have peace and an easing passing. She died in her sleep very peaceful! Time to do the same for Dad! Regardless of how much time he has left I just want him to feel safe and peaceful! Thank you for your comment! Very much appreciated!

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Going through this with a LO is always difficult and what is important for us is not for them. My LO is 69 with aTBI that is now into late onset Alzheimer’s. He has lost weight and is not very active but it’s a battle I couldn’t win and have had to change approach. Because of rapid cognitive decline after a case of Covid he was no longer safe at home and neurologist said memory care was the answer. Meals were a struggle he’d wander and forget to eat and he had trouble using utensils. Working with therapist helped to make things easier all around. Red plates encourage them to eat and finger foods or small bites are easy to manage which helped some but he couldn’t sit still for very long. we hit on idea offering premier drinks and small snack as he walked past. The only thing holding his attention at times is old tv shows so again an offering made during Gunsmoke would also be accepted. Being on this journey with them is not easy because we know their days are numbered and the condition is not one they will get better with. As a retired nurse I have been so into healing that now preparing for a death was not something I saw coming so soon. The accident that led to this stage was not expected and I have had to get mental health counseling to help in dealing with this. Support groups and taking care of yourself right now is actually most important for you over getting him to eat. Harsh as it may sound whether or not he eats will not change a thing. What it did do was make us the caregiver feel like we are doing something good for them because it was something we could control. I’m at the stage I can’t control anything but to visit and be there in the present. A frozen coke icee is more important at times and he doesn’t know who I am most times and sits long enough to enjoy a snack with his drink and then he wanders around. I remind myself what we had and try to make a few new memories and remember to breathe and laugh. Anything other than that stresses everyone out and accomplishes little to nothing . Hang in there, he’ll be fine but you need to take care of you first and foremost .

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Yes, to all of this. Thank you for sharing.

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I can relate so much. My Dear Husband has Parkinson’s with Lewy Body. His birthday was the 7th. He turned 77. In the last year he went from 165 to 111. He eats pretty good at breakfast and loves ice cream with whipped cream on top. He also loves to drink Coke and Sprite. Not the best to drink but a few sugar calories. He nibbles lunch and usually skips dinner. One day he wants steak, the next salmon. But whatever he wants, he gets. It’s the least I can do. He can’t feed himself at all due to severe tremor, can’t walk, can’t dress himself or go to the bathroom. He’s at home in Hospice care but I’m his only helper. My fibromyalgia is so bad from wrestling him in and out of bed, on/off toilet, in/out of wheelchair. I can’t take care of him at this pace anymore. I’ll be talking to the Nurse Practitioner tomorrow about next step. If I wait much longer I won’t be able to care for either of us.
Take care of yourself first. Prayers to all. 🥰

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My prayers go up for you - I can feel your pain. My Best wishes for you! Take care of Yourself first! It does sound like it's time for more help! Dad has Lewey Body Dementia without the Parkinson's (so far) but he does have terrible hallucinations - poor guy. I just reassure him that he's safe. It's a lot - I know! Take good care of yourself!

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Mamacrow: The elderly appetite isn't what it was when they were younger, e.g. my mother took three separate days to finish a Panera Bread 'bear claw' pastry. They just don't expend enough calories.

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Thank you - I'm sure finding that out! Dad's favorite is anything sweet! lol Thanks again! :-)

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I know it is frustrating to watch their decline, but this is his body/mind shutting down. Make sure he stays hydrated and let him eat when he wants to. You might try eating when he eats or sitting with him when he eats to try and keep him focused on the task. My mom will forget what she is doing so then I will spoon feed her so that she will get a couple of bites down.

My mom is now under 100 lbs, I figure once she stops eating all together it will be time for hospice. It is very hard and I certainly understand your anxiety over it all.

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Thank you. I do sit and have my coffee with him while he eats. During the season we watch the Bears on Explore Live Nature Cams - right now it's Rawhide & anything Western lolol. Then he kicks me out so he can take a nap! I always tell him "See you later Alligator" - and he can still reply "not for a while crocodile" I'm sure going to miss that when his time comes. Thanks again for the great suggestions. :-)

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Cream of wheat can be pumped up calorically by cooking it with whole milk and adding butter. You can increase the protein with protein powders or stir in nonfat powdered milk. Ice cream is THE miracle food. That seems to be the food anyone will eat.

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Thank you! This is exactly how I make his cream of wheat, whole milk, butter, brown sugar, honey, cinnamon (he loves it sweet) I make up a protein shake on the side and a soft banana, oh & coffee with Italian sweet cream! lol That's his routine every morning. Ice cream will be coming up - he doesn't want it now because he's cold. But come summer I'm sure it will be high on the list of his menu hahaha (mine too) :-) Thank you again for your great suggestions.

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At this age and with dementia, just let the appetite be. Don't offer too much and don't force it.

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I fully sympathise; I understand how helpless this must be making you feel.

My mum has eaten very little for the last 13 years, since her brain was damaged by a stroke at the age of 63. Now that she has developed vascular dementia, she barely eats at all. Many days, not even a mouthful of solid food.

Mum is prescribed nutrition supplement milkshakes 4 times a day, which she hates but manages to drink with some difficulty. These aren't really sufficient, but they are keeping her alive. I don't know for how much longer.

I find it especially difficult because on good days my mum is lucid, funny, and can reason, but she cannot make herself do something she doesn't want to do. Those good days are becoming rare, though.

The thing to do is always give food that your father enjoys, gently encourage, but don't get stressed when he doesn't eat. All that would do is make both of you unhappy.

Now that your father is disinclined to eat, his appetite probably won't improve. There'll be good days and bad days. Don't take it personally and don't make your dad feel bad about something over which he no longer has any control.

The best we can hope for is to keep our loved ones as comfortable as possible, which for our parents now includes not being forced to eat when they don't want to. Once you can accept this new reality, it will be easier for you and help you to cope better with your caregiving duties.

Wishing you all the best, and comfort and peace for your father.

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Wow! 13yrs! I'm learning to let Dad be - I just tell him to let me know when he's hungry. He does eat breakfast every morning still (cream of wheat, protein shake, and banana puree & coffee with sweet cream of course! lol And lately all he wants is another protein shake for dinner (I use Optimum Nutrition Serious Mass banana flavored protein powder he likes it) It's hard to find a protein shake with good flavor. Yuck! Sometimes I blend it with a 1/2 cup of frozen berries - he LOVES that one! My Mom passed 10 years ago at 83. She was ill all of my adult life. I was her caregiver as well as her mother's (my Grandma) Mom had mild dementia towards the very end of her life - she had heart issues. My Grandmother had lung cancer (never smoked a day in her life) she passed at 90yrs. So I've been through these things before but with Dad it's been a battle with the Lewy Body dementia - a whole different beast. Or, maybe I'm just getting too old for caregiving - I'll be 68 in August! Do ya think! lol Thank you again for your input. This forum has really helped me so much!

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My mom has Lewy Body. If she chooses to stop eating I will not interfere. At 90 she has expressed her desire to leave this earth. I would not want to “save” her because of my need for her to stay here. Her quality of life is so poor {her words not mine}. I would encourage fluids…milk, water, juice even milkshakes. PS: I was a clinical nutrition dementia staff member for 27 yrs.

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Thank you. I have loosened the reins on trying to get him to eat. He's still eating a good breakfast - so I'm happy with that. I just ask a few times throughout the day if he's hungry - He says nope - So I say "just let me know when you're hungry Dad" He likes that. But funny thing, this week he started telling me "Nobody feeds me" lolol So I go along and say "well let's take care of that right now - what would you like?" Then he'll say I'm not hungry yet! lolol So, my point is that I'm way more relaxed about it now. He's still in great health! I'm thankful for all the input from this forum - Your answers have all help me so much! Thanks again.

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96yr old dad with Lewey Body Dementia doesn't want to eat! What to do?

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