Lewy Body Dementia-- any experience with it?

In My Humble Opinion
61

Yes, I did get reimbursed. It was only her son and me who were involved with her care. We were both on the same page, so it was easy.
The house was in such poor shape it went to a flipper. For that reason, it was a fast sale

She did have long term friends who stuck by her and we had a visitor’s schedule. I lived 1.5 hrs away and went 3-4 days a week and spent the day. That was another reason to pay out of pocket. The facility that accepted her insurance would have been a minimum of 2.5 hrs away from me, and at least an hour away from her friends.

I hope ML gets the help she needs and also that the experience, for all involved, is as simple as it possibly can be.

62

Unfortunately I have up close and personal experience with Lewy Body Dementia. The brain controls everything we see, hear, feel, think…so when plaques form, all sorts of weird shit happens.

63

Add FTD (Frontal Lobe Dementia) to the list.

64

I texted Fanny (the sister) this morning and said Mary Lou must be checked out for a UTI immediately. That saying came to mind, “When you see hoofprints, think horses, not zebras.” If it is a UTI, that is an urgent and potentially life-threatening situation.

65

Any update?

66

Actually, yes. Your question is well timed.

Mary Lou was in town this week with her sister from New York and her brother who is also from the Dallas area. I went to pick up Mary Lou at her motel to go to lunch on Tuesday.

When we were seated at the restaurant, Mexican food, of course, after other random small talk, I asked her whether she was still seeing people in her backyard. And I asked her, “When you saw people in the backyard and Fanny was standing next to you, did she see them?” And of course, she had to say no, but it didn’t seem to be a matter of concern to her. It’s like it didn’t seem to matter to her brain that she could see these things, and her sister couldn’t.

I asked her about going to the doctor because she might have a UTI. (Although frankly if she did, it probably would have gone septic by now, so she probably doesn’t.) And she did that thing that people do When they feel they are being harassed and scolded, “Yeah, yeah, I know I have to go to the doctor, yeah, yeah I know!”

And then she went on about other things she needs to see a doctor about that to her are higher priorities, like an eye exam, episodes that she thinks indicate low blood sugar, and some bumps and things on her face, etc., etc. Deflections and distractions. I said, those aren’t high priorities, seeing things that aren’t there - that’s a high priority.

After we came back to my apartment for coffee, I wanted to show her how to take a picture on her phone and send it by text message. I also wanted to show her how to dictate her text messages, which is a nice option, I think, and I use it all the time. She had in her mind that both of these things were extremely complicated and would need hours of instruction and practice. When it took me approximately 2 minutes each to show her these operations, I’m not sure it registered. I did ask her to do both those things, but I doubt if she remembered or if she will be able to do them on her own. This is a woman whose career was as a technical writer. :slightly_frowning_face:

When it was time to leave, it got a little strange. this is only the third time she’s been to this apartment since I moved here two years ago. But it’s a smallish apartment, only 830 ft².

I went to the bathroom, and when I came out she said she was going to go, too. And then she couldn’t find the bathroom. That I had just come out of. This is a very simple layout, and first she went to the front door, and then to the utility closet, and after I said “no to the left,” then she did find the bathroom. THAT was disturbing.

When we went out into the hallway, she walked right past the elevator, which is almost directly across from my apartment’s front door.

I drove her back to the motel and dropped her off. They are visiting the youngest brother who had the stroke, and apparently he is doing much better, although I don’t have any details, except that I think he is talking.

I’m glad Mary Lou has plenty of family, all younger, who are in a position to help her out. Fanny and the local brother have seen her in action now for at least 10 days, and it’s up to them to decide what to do. Both of them are levelheaded. I’d like to be kept informed, but I don’t want to become shoulder-deep in this situation.

As somebody on TV used to say, “That’s all’s I know.”

67

Yeah. What poked this thread in my mind was our recent allegedly “seeing” demons poster, and those trying to reason with him that he needs to see a psychiatrist for his hallucinations.

I hope your friend’s family is making sure she is safe and properly evaluated soon.

Thanks for the update.

68

Yeah, I thought of that when I peeked into that weird thread, too.

Years ago when my mother was still alive and she was living in San Diego, one night we had a phone conversation where she told me that she had been talking to her mother and father who were sitting on the sofa next to her. My mother was 92 at the time, and both of her parents were long deceased. When we hung up I called her next door neighbor and asked her to go over and see what the hell was going on. Of course, there was nobody there, except my mother. Next time we talked on the phone, Mama asked me, “Did you think I was having a supernatural experience?” :roll_eyes:

Thanks for your interest. :slightly_smiling_face:

69

Great, albeit greatly disturbing, report. You see more details than Columbo.

Ref this bit:

One thing I noticed in many non-demented elderly folks is that their willingness to have a long or varied to-do list really shrinks.

Late aged MIL needed a haircut, new shoes, and a dental visit. But she refused to schedule the haircut until after we’d taken her to get the shoes. “Because I just can’t think about more than one thing at a time”. Likewise no dental visit could be scheduled, even for 6 weeks hence, until after the haircut had been scheduled and then accomplished. Even knowing the dental practice was backed up enough that there was no possibility of the dentist happening before the haircut it was still essential to only work one issue at a time.

Might have just been her idiosyncracy, but I saw some of that in my other elder charges at the condo.

As applied to Mary Lou: If she already had this sort of tendency before the dementia got going, that may be some of what you’re seeing too.

But yeah, overall, she’s deflecting like the Enterprise under Klingon attack.

70

Mary Lou has always had a problem with decision making, and it is getting worse. She’s one of those people who can’t do a task until she’s done the thing that has to be done before that task, and there’s the thing that has to be done before that task, etc., until everything grinds to a halt.

“I can’t empty that box of books, because I want to bring in the bookshelf from the bedroom, but before I can do that I have to some find someplace to put the collection of model airplanes in the bedroom, and then I have to paint the inside of the bookshelf before I can put the books in there,” and it goes on and on and on and nothing gets done. She acknowledged at lunch on Tuesday that her indecisiveness is getting worse.

I think Mary Lou would do very well in a residence like the place I live in. No yard to worry about, and that is one of her biggest worries, as her yard is over an acre. She still mows it herself. But here everything is tidy and compact and things are taken care of. Meals, maintenance, security, social life, if you want it. It’s pretty ideal.

But she’s lived in that house for 50 years (with two partners, both now deceased) and it’s crammed with stuff. There are even two storage buildings in her backyard that are crammed with stuff. The trip from point A to point B is a pretty long hike. Chances are it won’t happen until she’s forced to do it, like I was.

BTW, on August 4th, it’ll be 2 years since I got the boot from my landlord and wound up here a month later. He did me a favor, but I still hate him. Hey, old ladies are entitled to their grudges

71

Late Aged MIL could have uttered that very parapgraph. I feel your pain.

72

Some of this reminds me of when my dad had seizures after having a brain tumor removed (a benign meningioma). The seizures were caused by scarring left by the surgery. I remember a time at a Vietnamese restaurant when he tried to use a piece of basil as a spoon. He really thought it was a spoon until I pointed out it out to him.

I hope Mary Lou’s family gets her to a neurologist soon. It’s what she needs. They may have to do something like an intervention to get her to go, but it would be a terrible shame for her to go on like this if she has a treatable condition.