Constantly organizing and starting over

concerned_sister

It seems to me what I'm about to describe is a common behavior, but I didn't see it on the staging tool. It seems akin to the hunting and gathering in early stage 5 but I'm interested in input from other folks.

When looking for a check book recently my DB's wife mentioned she had to be careful with her stuff. DB was constantly "cleaning" (not a lifelong neatnik) and put away her purse or other items that were out, and she would have difficulty finding them.

He also recently completed a project of cleaning out the garage including new shelving. His wife reported he would often take items out of a section put them all in the garage floor then put them back

Does this sound like progression into early stage 5?

Side note: he recently took pictures of the side of the garage with all the neat shelving. On the opposite wall is a small waist high freezer. With our backs to the shelves - he was setting his phone on the freezer showing me his pictures to admire. His wife walked in and tried to direct my attention to turn around and look at that side of the garage, rather than pictures of that side of the garage. He was mildly annoyed and didn't seem to get that it was the same accomplishment he was trying to show me.

H1235

I wonder if it could just be a combination of being board (not working) and a desire to accomplish things he has been wanting to get done while he can. My mom talks of all the big things she wants to do (but also struggles with her mortality and the reality that she will never be able to complete them). With your brother being younger this might be weighing on him even more. My mom would never have the executive function or attention span to do a project like that. The need for tidying could be a personality change. My mom was always indecisive and quick to ask for help, now she is confident and self assured(that’s my nice way of saying demanding and argumentative). The picture on the phone vs just looking at the completed project is odd. I guess it’s just the way things in his brain are working. It’s hard to make sense of it. My mom is also at that end of stage 4 maybe beginning stage 5. It’s hard to know. I guess eventually it will be clear as symptoms become more obvious.

harshedbuzz

It sounds more along the lines of obsessive behavior. This may be being driven by increased anxiety related to the changing structure in his life. He's probably looking for ways to be useful at home. If it's troubling him, medication might help. Often a low dose of an SSRI can take the edge off this kind of thing.

My dad didn't do this, but my friend's mom did.

HB

concerned_sister

Chug1235 and HB,

Thanks for your thoughts on this. I had to laugh, I've been thought of as confident and self assured more than once. Re DB, I hadn't thought of it as a personality change, but there is some truth there. He still works, though it's a special situation. I think it started as accomplishing what he could while he could, but then became compulsive.

HB from what he expressed, I don't believe he sees it as troubling. He now goes through the VA for health care and speaks at least monthly with a member of their TIDES team (mental health, original referral for sleep issues). Hopefully she'll be in tune there.

He had his PET scan yesterday. The staff there said it was his member of the TIDES team that ordered the scan. (Original order written outside the VA system.). They said to expect her to discuss the results with him. They have an appointment next week.

Edited to add: I'm the primary contact and am in on the conference calls. I don't have a clear picture as to whether she'd call me first separately to go over the results.

H1235

https://alzconnected.org/discussion/comment/216251#Comment_216251

Sorry there is nothing wrong with being confident and self assured. Mom just takes it to a whole new level.

concerned_sister

Hi Chug1245, I was pretty sure that's what you meant re your mom. I was just owning one of my own flaws.

ButterflyWings

It would be interesting to see when he tends to do these activities. This type of rummaging occurred more during sundowning time for DH which was always early afternoon for a couple of hours. Even now, he can start to get very energetic, antsy, and seems to have a purposeful intent around the same time of day, trying to get up and move around suddenly — I or the aide have to stay close by since he is a fall risk and hyperoral. He touches and picks up everything and before this was putting things in his pocket, sock, etc. That was more of the hunting and gathering activity here, where he'd literally confiscate things sometimes never to be found. That was different from his sometimes efforts to organize things a bit — like filing papers or mail inside of a magazine or book, (or the garbage) like it was old days in the office but just losing things.

It does sound like your LO may be trying to work on a hobby or something that actually needs doing, or be productive at something which for DH in earlier stages was filing, paperwork, reading (but he couldn't really), and marking up just about everything. Like your brother, he was trying and thought he was accomplishing things but was of course not getting anything done really.

These days sundowning is still evident but brief. Even with his longtime stable meds, DH still gets a flash of energy around the same time of day, when he wants to get into something, anything by this point. In 7A-ish, it is a very faint flash, a minor burst but definitely noticeable and almost like clockwork I noticed again yesterday. His sundowning instinct and the duration lasts a much shorter time if I just validate and redirect him he can be appeased with something in his hands, usually a snack of some sort since anything he picks up these days goes into his mouth anyway.

When your DB is doing this rehoming of things i.e. reorganizing things I wonder if it tends to be around his sundowning time?

harshedbuzz

@concerned_sister

Two other thoughts come to mind about this situation.

The first being a function of loss of empathy. Putting on my autism-mom hat. Too often people define empathy simply as sympathy; often it does look the same— "I'm sick and he is being demanding". It's more nuanced than that. Empathy is the ability to put yourself in someone else's head in terms of thoughts and feelings.

In your brother's head, this may have been a higher value accomplishment than either you or SIL realize. As dementia progresses, the PWD's world becomes smaller. He may have wanted to relate the process through pictures in narrative form from "befores" through the tweaks to the final reveal. And the SIL came along and ruined it. In other posts it has sounded as he's one who is used to recognition for his brains and talents— perhaps he's craving a little of that feeling.

The other piece to this is that this little exchange could be a friction between husband and wife as they adjust to the changed dynamic in their marriage. They've both been smacked upside the head by his diagnosis in that going forward the roles, responsibilities and expectations they brought to the marriage have been upended. I wouldn't expect this adjustment to be easy for either of them.

HB

concerned_sister

BW,

It seems it's not sundowner related. SIL did not report time of day, but I haven't yet noticed anything out of the ordinary when I'm with him that time of day.

"…It does sound like your LO may be trying to work on a hobby or something that actually needs doing, or be productive…". That observation rings true. He had been somewhat of a workaholic - supporting IT clients as a side business on top of his day job.

HB, "…He may have wanted to relate the process through pictures in narrative form from "befores" through the tweaks to the final reveal." Your insight here rings true.

"…he's one who is used to recognition for his brains and talents— perhaps he's craving a little of that feeling." That's another observation that feels on point. In his side job, he always seemed more motivated by problem solving praise than the money earned.

"Friction" isn't the first word that comes to mind, but there is an ongoing change in dynamics. There was a recent moment when I sensed a competition for my attention. My instincts on that were that SIL misses conversations with DB and was more eager to start a conversation. I think DB was more used to monopolizing my time so there was this shift in dynamic.

—

DB seems to be getting foggier. A few weeks ago we were at the local Senior center and signed up for a lecture on Early Memory Loss. DB expressed an interest. Just a little while ago (interrupting my response) I got a reminder phone call that Monday is the date. I called DB and he seemed to be slightly lost in understanding differences in a lecture he wanted to attend vs another test he needed to take vs talking one on one with his counselor for sleep issues.