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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!

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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Mamacrow Mar 6, 2024
Thank you! It's good hearing it from someone else! I appreciate it. Thanks
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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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Mamacrow Mar 8, 2024
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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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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Mamacrow Mar 10, 2024
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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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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NeedHelpWithMom Mar 8, 2024
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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Mamacrow Mar 10, 2024
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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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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ElizabethAR37 Mar 10, 2024
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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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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Mamacrow Mar 10, 2024
Thank you - I'm working on it! Thanks again. So many great suggestions here. Really 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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Beethoven13 Mar 10, 2024
Yes, to all of this. Thank you for sharing.
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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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Mamacrow Mar 8, 2024
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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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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Mamacrow Mar 10, 2024
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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