Lessons learned when partner had surgery with Lewy body dementia

My goodness, you are dealing with a lot, Is your wife going to rehab or home? Do you know how she fell? When my loved ones started falling it continued…..soon thereafter there was no mobility.

I you had to choose between loosing movement in your wifes elbow or a little more removal of her brain which would you choose? The brain may recover slowly to the current base line but she would loose normal movement in her arm forever. The orth docs and primary care docs of course say you have to fix the arm. The neurologist says you may effect the brain but there is anothe pill you could try. What risk do you pick? We chose fix the elbow. I don't know if it was the right choice and may never know. But we lost some of the normal brain we had. Time will tell if it comes back. I wasn't presented with all the choices and all the possible outcomes from a doctor, but chatgpt did give me all of them. And presented in an honest and forthright way. It has been a help to me. It is a terrible choice to have to make, but I have the sense there will be more of those to come. We will try to get back what we lost Thursday. It may take some time.

@celia16
My wife came home. She fell because the blood pressure dropped suddenly from parkinsons. It drops maintly from the sinamet she took to combat tremors. I knew it could happen. It has happened a few times. You can be talking to her walking about the house and she drops literally like a rock. Straight down often losing consciousness briefly. She fell backwards onto her rear and her elbow. I let my guard down for just a few seconds and didn't catch her. No more freedom of movement for her. I know it will not get better.

Hi, @joedeb I'm Scott, and while I'm no medical professional, I was on the staff of the National Alzheimer's Association raising funds for their research work for several years. I was also a caregiver for my MIL during her years with dementia.

I remember being told by some of the researchers that, quite frequently, dementia patients will drop off their current cognitive plateau when they have medical interventions and/or changes in their location/routines. I witnessed this with my MIL on several occasions. I know every dementia patient and their journey is unique, but in my MIL's case, she did not regain what she lost in those drops.

I wish you Strength, Courage & Peace

Has she had general anesthesia? Our experience is the elderly even those without obvious dementia don't have adequate liver function to clear the brain of anesthesia quickly. It may take as long as several months. However, one fall precipitates multiple falls. It might be time to look for a safe environment or safety equipment.

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....

LBD is a cruel disease

Joedeb. You are right. Most hospital staff reassure us LBD families that they are experienced in caring for patients with dementia. And they are. But few know much about LBD.

Was your wife on a dementia drug before her surgery, like aricept or another cholinesterase inhibitor? If so, did they have her stop taking that before the surgery? What drugs did they ask her to discontinue, and for how long?

Do you know what anesthesia was used, or even what type, like general or local or spinal…?

Thanks so much for posting. God bless you both.

@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..

@joedeb , have you considered getting help? I’d explore the sustainability of around the clock hands on care long term. I’ve done it twice. Even with outside help coming in, it was extremely difficult.