Caregiver sundowning

I hope you had a well deserved break and regrouped for the next siege. My husband has ALZ; but he has the 4-5p yen to go out; also after dinner. He also has hallucinations of people in the house. The family has been researching his symptoms and vote for the diagnosis of Lewey Body. When I told the neurologist about his symptoms and our suspicion, he said that ALZ patients do the same thing and no it wasn't Lewy Body. He said that LB patients pace and just can't sit or relax. Could you enlighten me on the subject. In the big scheme, I guess it doesn't matter what the disease is called; awful either way.

I know it seems like sidestepping the question, but there are so many behavioral variations that predicting the exact nature of the disease progression is impossible. We may categorize the cases according to some published or word of mouth information, but planning for the future is very challenging. We need to keep communicating and trying new strategies, but ultimately, it's a guessing game. Paradoxes and ironies are plentiful, while we caregivers keep trying to figure things out. Sometimes it just plain feels like a losing battle, sad to say.

I totally agree that it is impossible to pinpoint what the ALZ umbrella really covers. Each patient is different and nothing is predictable. I think that is why it is so maddening. Children grow up in a steady pattern of stages, but there doesn't seem to be that kind of steady progression in this disease. Since there is no winning outcome possible, I'm afraid it is a losing battle. All we can do is make the best of each day for ourselves and our loved one and call it "good enough." Thank you for your response.

At least we know we aren't the only ones fighting this battle. A little empathy for others in similar situations can be very comforting, thank you.

Hi billiekip!

Lewy Body and Alzheimer's are very different animals. Alzheimer's disease from what I am told does have stages that the patient goes through. Lewy Body does not have stages. No two LB patients are alike. The brain is affected gradually, but the starting point can be anywhere in the brain. Pacing can be part of LB, but not always. Sundowning is what it is sometimes called when a patient will pace or have other behaviors. Look up sundowning. You'll find that it can occur with Alzheimer's or other dementias. Lewy Body can be diagnosed by a DatScan or PetScan. Find a neurologist who is well-versed in treating dementia patients. A true diagnosis can be crucial in treating your loved one.

Very interesting discussions! I suspect the only way to make sense out of these various ALZ patient behaviors is to let an AI take a crack at finding a pattern. That would require Mayo to get/keep a digital record of these discussions. I hope someone from Mayo at least reads these.

AI is transforming pathlogoly (SP?) now. AI is good at finding patterns in information if it can get enough data. If only we can last another 20 years the tranformations will be huge. AI is ony a year and half old!

This sounds very familiar. The words still hurt. 🙁

@goodold, you may be interested in learning about the fascinating work of Dr. David Jones at Mayo Clinic.
- AI boosts the power of EEGs, enabling neurologists to quickly, precisely pinpoint signs of dementia https://newsnetwork.mayoclinic.org/discussion/ai-boosts-the-power-of-eegs-enabling-neurologists-to-quickly-precisely-pinpoint-signs-of-dementia/

Sundowning is becoming a real issue now as I care for my husband. I hear lots of caregivers speak of it but wonder if there are any techniques that help. It varies from day to day but my hubby can get angry, agitated about any little thing. Or, he may start talking about a topic and devolve into meaningless (to me) jabbering. The worst is when he asks me questions that I'm not quick enough to make up an answer to. I don't know works sometimes but sometimes he insists that I do know and wants to know what's wrong with me. Sometimes I can turn the conversation to another topic and other times it indicates to him that our marriage is over. ( I'm hearing this much more frequently these days)

I'm shedding more tears these days and just taking one moment at a time. (Forget one day at a time)

This is heartbreaking when meaningful communication deteriorates and it's no longer possible to work out agreeable solutions to everyday issues. It totally changes the relationship, and often other family members don't realize the seriousness of it, so their helpfulness is limited. It's a lonely challenge. We try strategies and ideas, read books, go on discussion forums, etc. That's all we can do. I am wondering if some sort of family counseling by Alzheimer's psychologists would be worth trying, has anyone tried this?