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
Good luck,
Carol
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.
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.