Fixations in early dementia?

I am in the same boat as you are. My loved one was diagnosed with Lewy Body Dementia (LBD) about 3 years ago after exhibiting symptoms (unknown to us) for nearly 2 years before & nearly a year of searching for a diagnosis. Since LBD does not have distinct stages, I can't characterize where he stands in terms of its progress. However, he has fixated on various things, mostly personal items: his wallet, cell phone, house keys, money, etc., none o which he really needs. He also focuses on his glasses which he constantly misplaces & needs for reading as well on brushing his teeth & dentist appointments of all things. He does not fixate on other appointments though. There are other fixations too numerous to list. But they come & go on a periodic basis. Like you, I find it extremely frustrating & distressing. His neurologist basically thinks that as long as his fixations are harmless to not worry about them. But that does not help with my frustrations or the effort it takes not to "blow up" about the near constant fixations occasionally.

My husband is on carbido levodopa, quetiapine (Seroquel), rivastigmine (Exelon) & pimavanserin (Nuplazid). The neurologist has not mentioned adding anything for the fixations.

So, yes, others, at least me, experience these things in their loved one. And like you, I too would like some answers.

Both my mother-in-law and my husband have had these dementia-related fixations. I had never thought to use that word for them, but it’s a good one. My husband would become obsessed by some question in his mind that he couldn’t solve. “Where is our money?” “How much money do we have?” “Where is my bike?” I used to write it all down on sheets of paper for him to keep nearby. But now, that seems to be subsiding, and he seems more content. I don’t know that there’s any solution except giving short simple answers and practicing patience in dealing with the endless repetition of fixations. Best of luck to you. I know how frustrating it is. ❤️

Hello All, I put a whiteboard on our fridge. My husband writes what day it is every morning. Then, when he asks me what day it is, many times during the day, I tell him to go look at the whiteboard. If he can't get to the whiteboard easily, I tell him "Yesterday was Saturday...and tomorrow is Monday so today is ...." So far, he always knows the the answer. I think this keeps him engaged and helps him exercise his brain a little. He has not become frustrated with this so I continue to do it.
When I go out, he always asks when I'm coming home. We write it on the whiteboard. It's the same every Saturday - I grocery shop and come home at noon, for years now. Yesterday, when he asked me, I said, "Come on, you know when I'll be home," and he said "Noon." He may know, but he has a need to repeatedly check the information, because the memory of it doesn't stay with him for long.
I notice he tests himeslf often, asking me what street we live on, where we lived before we moved here. He is often happy that he already knew the correct answer.
I also learned not to announce his shower too early because he'll fixate on it and hound me to do it frequently, even if I've told him it will be later. Now I just tell him a few minutes before the shower so he can't fixate.
I recently saw a film called "The Father" with Olivia Colman and Anthony Hopkins. The story unfolds as the character with dementia perceives it. It was unsettling because I never knew what was what, what was true and what was false. It made me appreciate more how confusing dementia must be because reality for the person with dementia is always changing. Watching the film I felt as if the ground was always shifting under my feet. It was eye opening to be in that situation myself.

@tsc. The movie recommendation sounds like it would so helpful! Was it in a theatre or on a streaming channel?
I think everyone would love to know!

My husband has the same issues with being fixated on certain things. It drives me mad, but he doesn't know he's being irrational. I try to be a saint and slowly and kindly help him through the fog, but saintliness just isn't in my wheelhouse. The best I can do is to try to keep my facial expressions neutral and my voice calm. Notes don't help if the person doesn't remember to read them. They don't help if he loses or forgets his glasses somewhere. So, yes, it's frustrating.
When I look at other people who are dealing with similar issues, I wonder how they remain calm and go through their days/months/years with what looks like serenity. I've been told by some of those folks that they can manage it because they don't have a choice. I guess that's the answer. No choice. So we soldier on and find joy where we can.

My husband also has lbd. My sons came and helped clean out his 4 stall garage and we filled a 30 yd dumpster. He could not park his own car in our house garage because he had too much junk in other garage. I asked boys to come help as I was not going to shovel out his car all winter again. He sleeps. Til noon. So its always me. He adamant everything he had in garage was worth hundreds of dollars. My one son would distract him with questions and my other son and myself would throw in dumpster. Most was covered in mouse droppings and had mouse nests in!!!
Now he wants to know where all his “valuables” are!? He never helped carry anything to dumpster. Idk if he even realizes the extreme immense of work we all did.
Part if the disease nut frustrating.

Hi @becsbuddy, I'm one of those dinosaurs still getting DVDs from Netflix. That program stops the end of September. "The Father" is a relatively recent film so it must be available on their streaming platform, or others.

Thanks @tsc. I’ll be sure to look for it. The Father with Anthony Hopkins and Olivia Coleman. Two outstanding actors!

What wonderful sons you have, such a valuable and kind part of your team.

Available for rent on Amazon Prime.