My Dad suffers from Lewy Body dementia and is well into the mid stages. In the last few weeks I've discovered that he is unable to manage heating any kind of food either on the stove, in the oven, or in the microwave. He's been eating cold food - IF he remembers to eat. When I cook for him and leave him a meal, he insists that I write out explicit step by step instructions for how to heat it in the microwave but still is not able to follow those. He lives in his own home, alone and refuses to even discuss LTC. I am running out of ideas to feed him. Any suggestions? Thanks

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Jeanne is a wise woman. I believe she spelled out your options pretty well. Your dad will complain about any changes, but changes will need to happen eventually, as he won't be able to sustain living alone. Please try to get him some help, gradually. Adult day care if often fought against until they try it and find the socializing is a great joy. Then you can't keep them away. This paves the was for assisted living in many cases.
Good luck,
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My husband with lbd would certainly forget to eat if not reminded. He thinks he can heat things up, but I try to avoid that. (One day he came across some wild rice in the cupboard and thought that sounded good. So he poured some dried grain on a plate and stuck it in the microwave. Oh my! If you think popcorn burned in the microwave smells up the house, try wild rice!)

I am impressed and surprised that your dad can still live alone. I suggest that you begin looking at long term care facilities, regardless of his wishes. This is a progressive disease and it is best to be prepared for future needs, rather than react in a crisis.

As for right now, one approach would be meals on wheels. Providing he eats it when it is delivered, that would be a hot nutritous meal once a day.

How often are you at his house? Can you leave meals all ready to eat cold, and then call him and remind him to eat them at the appropriate times? A hard-bolied egg, a muffin, some shaved ham, and a banana attractively arranged on a plate and covered with plastic wrap would make a suitable meal. If he can still eat raw vegetables a nice chef salad is good. There are lots of foods that do not require heating, so that is a possibility, especially if he were getting a warm meal delivered each day. The temperature of the food doesn't matter to its nutrional value, so try to plan good cold plates. You just need to make sure he isn't eating uncooked food that is supposed to be cooked. Cold leftover cooked pizza is fine. But thawed frozen pizza that has not been cooked could be unsafe.

Another approach is an adult day program. He'd still live at home, sleep in his own bedroom, dress from his familiar closet, etc. But he would be picked up in the morning, taken to the program, spend the day, and be brought home in the afternoon. The program my husband goes to has a hot lunch, snacks, and I've seen some participants eating breakfast there. This is not an LTC. There is no obligation to continue. But it does provide supervision, interaction with other adults, a little exercise, and meals. Maybe Dad would be open to something like that, especially if it is a way to postpone LTC.

I'd say it is time for at least some kind of daily caregiving help. Maybe you are playing that role. If not, consider arranging for paid help.

Good luck to you.
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My mom has LBD too. Jeannie's advice is spot-on. As others have said and you probably know, the progression of LBD is quite, quite different than it is for Alz.They remain cognitive and capable or so it seems for such a long time - this aspect of LBD is both a godsend (they still are alert, know people, are social, can do daily things) and a problem (you & family and their friends think all is well because of how they "look" but they are having paranoia, hallucinations, financial problems, etc). My mom would have an episode in which she would be terribly confused and especially paranoid. For a long time it would be about 6 - 8 mo. apart and then got closer and closer. Now it's kinda constant, which is due in part to Exelon patch and Remeron taken like clockwork but she is calmer.

For us, the kitchen situation was the tipping point for forcibly moving my mom from her home of 50 years to IL. Mom was driving!! to adult day care (hot lunch and activities) three times a week and got meals on wheels twice a week. This seemed to work fine for about 3 years. In 2007, I noticed the food (a sea of white clamshell packaging) would stack up in the refrig and go bad; gas stove would be left on; pans would be charred; knives had broken tips; 6 visits from the plumber; the pantry looked like an grocery aisle in the jam & soup section but no other staples. We went for an Easter visit and literally our son opened the kitchen door and jumped back from the gas odor. That was it. She was in her room folding laundry oblivious. I put her name on IL waiting lists that afternoon. She didn't smell it, didn't see it was a problem and whatever happened was not her fault (stove knobs stuck; plumber did it wrong and he did it on purpose as he wants her house so he was trying to kill her; they gave her food that was spoiled & are trying to poison her so she didn't eat). Now if she was with others (like with us or when she was at adult day care) she would eat just fine, it was once she was at home alone that her brain would tell her "no" don't eat.

But because she has LBD, she seemed totally OK for IL and it worked pretty well for over 2 years (she can walk on her own and went for daily lunch and weekend meals and did activities). Then the last year, I hired home health care to come in 3 times a week/12 hrs. Then she started wandering at night and that was it for IL.

The sad advantage of LBD over ALZ is they seem so "OK" and can bathe, get dressed, socialize, etc. so you might be able to get your dad into IL which costs significantly less than AL. While IL won't last forever, it gave me breathing room to deal with her house and sort out stuff and compare her against others which is hard to do when they are in their home. It's different for all of us how to work it out.

But eventually LBD catches up and they can't function in IL. My mom went from IL to NH this year. She still walks circles around 90% of the other residents in physical capabilities but mentally she cannot function on her own and the paranoia is always there. She will not eat unless she is told/coached to do so.

What is your dad's weight? If you have a record of his weight for the past years, it would be helpful for getting him placed in a facility if you decide to go that route. If he has had significant loss (like my mom had a 15% loss within 6 mo. while in IL) that could be a "failure to thrive" criteria for NH admission.

Your "explicit" made me laugh. My mom too was/is big on exact lists - she wasn't like that before LBD. Somewhere in the back of their mind, they know something is amiss and the lists make them feel that they are in control if they just can do the list. But they can't even start the list. None of this is easy. Good luck.
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I found that the drugs that my mother was taking were causing her dementia so I stopped them and put her on food supplements. Unfortunately, she had been on those drugs for several years so her dementia is still there but she is doing way way better in her overall health being on the food supplements than she was on those nasty drugs. Fortunately she doesn't live alone and my brother is able to care for her 24/7. Since she has false teeth and dentures really don't chew food like real teeth, we grind her food in a 4-cup food processor. Yes, we tried Meals on Wheels but they were dropping off a week's worth of cold food for us to heat up and my mom said that she didn't like it. So we make her lots of bean soup so that she gets some fiber to combat constipation and liquids to keep her from getting dehydrated. We also give her some Hawaiian traditional foods like laulau and poi. To me, if a parent can no longer make their own meals they really should not be living alone.
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