Lessons learned when partner had surgery with Lewy body dementia

Yes, we've done that. People fall in nursing homes too was the reply from one doctor. I did not know about the body's ability to process anesthetics. She has some general surgery 20 years ago. Better this morning. I have had to frequently come up with new novell ways of getting her to take her meds. Probably one of the hardest challenges. We tried liquid tylenol last night. Spit it all out, too sweet....

My husband had back surgery back in 2016 and didn't wake up for 3 days. He then spent two weeks in the Hospital's Rehab Unit and then a few months in PT, OT and Speech Therapy regaining both physical and cognitive losses. In 2017 he was diagnosed with Parkinsonism. In 2018, he fell and fractured his shoulder. He was given Oxycodin for the pain. He had a total of 4 doses and it took a week for it to get out of his system during which he was confused, disoriented and hallucinating. In 2021 I took him to the Mayo Clinic where he was diagnosed with Lewy Body Dementia. In 2025 he's in a skilled care unit because of his physical needs. He remembers the code to exit the unit but forgets how to get to the bathroom in his room or what to do when he gets there. Lewy Body Dementia is a cruel disease.
The last time he went to the ER I had to stomp my foot and insist the Doctor treating him called the Neurologist on call. She didn't seem to understand that certain drugs can cause someone with Lewy Body to lose cognitive abilities and that the loss can be permanent. This is information obtained from Mayo. The Clinic has several good booklets on the disease.
None of this is easy but the emotional toll is the hardest. When I was reading these posts this morning the tears started. Two years ago when I moved him to Assisted Living was the hardest and the tears would come at any small trigger. He had been next to me for 51 years and that was were he was supposed to be. It has gotten easier but far from easy. It does help to hear from others going through the same process.
Prayers for you all!

@nelms She got a general anesthesia and a shoulder block. The anesthesiologist said they do surgeries on dementia patients all the time. My wife was only on sinamet and a small dose of an anti anxiety drug, venlaflaxine. They had me drop the sinamet in the morning before surgery. I wish I hadn't done that now. She went 16 hours without a pill. Its been a hard week.
Some may not understand the falling part. In a normal person when you stand, after sitting for a while, your blood vessels in your legs constrict so the blood doesn't drain from your head and allow you to get light headed. Well in parkinsons patients that reflex fails and then you get faint and fall, often becoming unconscious for a few seconds. It is just starting to happen to my wife. It means not leaving her unattended at all and I now keep a hand on her at all times. I have a gait belt ordered to try.
Still it's one day at a time and today was better than yesterday..

@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.

@joedeb How are you and she doing today?

@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..

@nelms My husband moved to Assisted Living the week of Thanksgiving 2023 because of physical issues. My sleep was being disturbed every night and I was failing. January 2025 he was moved to nursing care. He had become less stable. His balance wasn't good and I changed him from a rollator to a basic walker so his speed couldn't get out of control and cause a fall. Our journey has been interesting. We put paint tape on the floor to remind him how to get to the toilet, his bathroom is in his room. He gets to the bathroom and forgets what to do next but remembered the code to get out of the building. Anything that requires more than one step to do is a challenge which is almost everything yet on a good day he can carry on a conversation. Processing is the primary target of LBD. Yesterday he was concerned about how much he is sleeping during the day. I didn't have the heart to remind him that it's just the LBD progressing. It is truly a cruel disease. My best advice to you is read everything you can so you aren't caught off guard by the numerous curve balls that come at you and have your plan B for when you have to choose between endangering your health and taking care of yourself so you can continue to be his advocate and spouse. My prayers are with you and your family.

@nelms My husband moved to Assisted Living the week of Thanksgiving 2023 because of physical issues. My sleep was being disturbed every night and I was failing. January 2025 he was moved to nursing care. He had become less stable. His balance wasn't good and I changed him from a rollator to a basic walker so his speed couldn't get out of control and cause a fall. Our journey has been interesting. We put paint tape on the floor to remind him how to get to the toilet, his bathroom is in his room. He gets to the bathroom and forgets what to do next but remembered the code to get out of the building. Anything that requires more than one step to do is a challenge which is almost everything yet on a good day he can carry on a conversation. Processing is the primary target of LBD. Yesterday he was concerned about how much he is sleeping during the day. I didn't have the heart to remind him that it's just the LBD progressing. It is truly a cruel disease. My best advice to you is read everything you can so you aren't caught off guard by the numerous curve balls that come at you and have your plan B for when you have to choose between endangering your health and taking care of yourself so you can continue to be his advocate and spouse. My prayers are with you and your family.