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Lessons learned when partner had surgery with Lewy body dementia

Posted by joedeb @joedeb, Oct 17, 2025

Well , unfortunately my wife fell and broke her elbow. We has surgery yesterday to put a pin in. Lessons I learned:
Don't listen to the docs or nurses about discontinuing meds before surgery, especially any parkinsons or dementia drugs. Or put up a fight.
Expect the following day/days to be bad. Extra dilusions, paranoia, dealing with pain. So I'm supposed to do the tylenol/ibuprofen routine involving 15 pills a day for pain. Alternating those. My wife hates pills. Tried liquid tylenol-too sweet and spit it out. They will give you a bottle of opioids just in case. Don't use them they will make dillusions worse. Just skipping pain meds doesn't work. Pain triggers them.
We had a very good experience with the hospital and staff. But I felt they had not dealt with LBD patients. They said they operate on dementia patients all the time.
We had all the poa papers done years ago for times like this. But the neurologist had not declared her incompetent to make her own decisions thus authorizing me to sign and make decisions. If it hadn't been an emergency, they would have delayed or postponed the surgery. Her neurologist should have done the paper work 2 years ago. I just wasn't aware of the need. He did respond quickly and had the papers done in 30 minutes.
I was 3 ft away when she fell. I looks away for seconds.
I don't know how long the extra paranoia will go on. Days they say possibly with LBD. I have gotten some great help from family with food and offers for help. But this is now harder...

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jojok | @jojok | Oct 29, 2025
In reply to @nelms "@turtle4115 This is terrible to hear but so valuable to share. My husband and I are..." + (show)
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@turtle4115 This is terrible to hear but so valuable to share. My husband and I are also on the LBD journey. We are doing OK for the most part but are facing hernia surgery in a few weeks. Our surgeon has been in contact with my husband’s Mayo neurologist before, when he was anesthetized during colonoscopy, but I need to bring it up again. Thank you.

You said your husband is in assisted living. Is that due to his physical or cognitive needs or both? Assisted living can be an easier situation than memory care, but it is so hard to know what to expect about different types of living situations, if and when the time comes.

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@nelms We cancelled my husband's hernia surgery because of his very negative reactions to general anesthesia. It may be possible for your husband to have the surgery with an epidural anesthesia depending on where the hernia is.

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jojok | @jojok | Oct 29, 2025
In reply to @joedeb "@nelms She is doing better. I have had to adjust how I get pain meds in..." + (show)
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@nelms
She is doing better. I have had to adjust how I get pain meds in her. blend with foods like apple sauce hasn't worked for me. I have managed, up to yesterday, to make most of the food she eats taste bad. That's not good. I did some more research on chatgpt, which I highly recommend, and am now using stronger heavier foods. Last night I mixed her pain meds in a little ice cream and heavy dark chocolate syrup. It went right down. This morning I put crushed meds in a spoon of honey and it went right down. Follow up quickly with milk or another drink. Use something to coat the taste buds on the tongue until the bitter stuff gets past it. I don't know how long anesthetics remain in a person with LBD. Another thing I have learned is she can't or won't tell me if she is having pain. My only clues are she has discomfort or extra shaking or she gets upset and angry. It helps so much for us to get outside and go for car rides or any activity outside. Thanks for caring..

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@joedeb You are doing great work with the meds! I'm sure the food you prepared didn't taste bad. I have the same problem with my husband with foods he used to enjoy and now he doesn't want to eat. Also with pain he never mentions it. If he's extra crabby I ask him and he says he has a headache, or his back or neck hurts. He's still willing and able to take Tylenol thank goodness. I dread the day when he may not be able to swallow.

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joedeb | @joedeb | Oct 30, 2025

There was some level of fear going into the surgery for me. That she wouldn't react well to the anesthesia. You brin gup a good observation for me, that she can't remember to take big steps or to hold on the grab bar in the bathroom. We got one of those steppers, motorized, that she likes. I think that works well for usssss. She can burn up some extra energy and it helps with her restlessness. She is getting stronger. We go in for 2 week followup from surgery today. Tough decisions when you have to worry about anesthesia being the problem and not the underlying problem

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nelms | @nelms | Oct 31, 2025
In reply to @jojok "@nelms We cancelled my husband's hernia surgery because of his very negative reactions to general anesthesia...." + (show)
Profile picture for jojok @jojok

@nelms We cancelled my husband's hernia surgery because of his very negative reactions to general anesthesia. It may be possible for your husband to have the surgery with an epidural anesthesia depending on where the hernia is.

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@jojok
Actually, we just cancelled my husband’s hernia surgery, too. We ordered what looks to be a good hernia belt. I hope he wears it. It seems Lewy Body Disease requires hyper vigilance, 360 degrees, 24/7. It also requires more patience than I was naturally born with.

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