Understanding what they are thinking

carter129

My sister is approaching the mid-stage of her disease, which hasn't been formally diagnosed since she refused to pursue a diagnosis. She was tested by her physician for memory loss, and failed abysmally. We've noticed her increased confusion that has accelerated quite a bit recently. 

She's begun to display behavior that baffles us. Some examples:

-throwing food underneath the table during meals

-going to bed fully dressed

-hiding things

-throwing garbage under her son-in-law's home office door 

No one in my family has ever had problems of this kind and we're somewhat at a loss. I've read all the do's and don't's on this site, but I'm wondering if we could understand what's going on in her mind if we were just to casually ask her a few questions. For instance, I would like to know what her answer would be if, when she's putting dried food on the cat's bed, we were to ask "Whatcha doing?" in a friendly way. If we got an answer of any kind, it would give us some insight into what she's thinking and how we might prevent these kinds of actions. But none of us want to upset her or make her feel bad. We'd just like to get a handle on what's going on inside so that we could arrange her surroundings accordingly.

What do you think? Is this a bad idea? 

SusanB-dil

Hi carter129 - I don't see the harm in asking in a cheerful way. It may or may not give you any insight, however, as she may not even know why she is doing these things. If she does get agitated, and is getting more agitated each day, might be a good idea to let her doc know, as there are meds for that.

We sometimes ask MIL what she is doing, or why she has done something. We get answers that range from downright goofy to outright lies, and sometimes she will get agitated.

M1

Hi Carter.  You can ask, but I think it's foolhardy to think that you'll get any responses that make sense.  As others on this forum have said, "her reasoner is broken."  Sounds like you are still wishing/hoping for rationality when there is not any to be had.  Sorry, your wish is understandable but comes from a rational part of your brain--something she no longer has.  There is likely nothing short of 24/7 supervision that is going to stop some of these behaviors.

harshedbuzz

carter-

I can completely understand the impulse to understand why your sister does the things she does. While I was emotionally devastated by the impact of the disease on my previously intelligent, dapper and sociable father and my long-suffering mom, there were times when I was just fascinated in a more detached sort of way by things he thought and did. 

Many PWD do seem to follow the same general progression and there are enough similarities that the solutions tab exists. That said, if you had some familiarity with dementia through family experience, your sister's version of dementia would likely have a few behaviors that are outliers. While I get the curiosity, I can't think asking why outright would be worth upsetting her. 

This piece helped me get into dad's head a bit.

understanding-the-dementia-experience.pdf (alzconnected.org)

HB

carter129

Thanks for the thoughtful responses. My real intention in wanting to ask her was to see if we could get a handle on what propels these behaviors - so that we could avoid anything that might be triggering them. I guess I'm mistakenly assuming that there actually is a trigger (which would simplify things) rather than just something that isn't possible to understand.

LicketyGlitz

Everybody's got great responses here, Carter, but I'll add my two-cents anyway.

Totally ask her! Like SusanB said I doubt it will provide insight but it will allow you to have a conversation with her that can be entertaining for you both. Just go with the flow with whatever she says and see where it takes you two. If it does agitate her then you know for the next time that not a good strategy.

My mom threw garbage off the patio balcony down into the yard! I asked her sisters if it was something they had done as kids and they said no. We never did figure out why, except that she liked things tidy her whole life and maybe her brain just erased the concept of a garbage can under the sink. Sometimes I would see her heading to the screen door with the remainder of her dinner and I'd try and head her off holding the garbage right up to her and she'd still insist on throwing the food off the balcony. One evening my boyfriend who was weeding the flower beds below suddenly found himself doused in chopped tomatoes. She'd even take ingredients that I had prepared on the kitchen counter to make the meal with and throw them out when I wasn't looking!

We finally made a bit of a game out of it for ourselves so we could alleviate our building frustration - we began noting where her banana peel would land in the yard every morning and make jokes about her throwing arm getting stronger.

And the funny thing was, when she was lost that behavior, we kinda missed it. It was one more big flag that she was declining.

I wouldn't worry about going to bed fully dressed. I'd do a preemptive strike on her hiding things by hiding the things you really really need and leaving other stuff you don't care about out for her to hide on her own. And you might try taping some plastic under the office door, so after a bout of garbage tossing you can just wrap it up and put it where it belongs.

Good luck to your household!

Emily 123

 It's the brain struggling to use its connections.  A thought generates an action, but the ability to follow it through as a whole is gone. The brain will still try to reroute what connections it has left though,  plugging in a different action (sometimes similar, sometimes not).  

For example, Mom has an object in hand, it needs to be put away.  She can't identify a 'usual' place anymore, but is able to accomplish the initial thought by stuffing the thing under the sofa cushion.

F&E

My wife doesn’t know where the trash can is r can’t find it.she puts her trash in many different places among many other strange behaviors of her demented impaired mind. I just go behind her and clean it up

mommyandme (m&m)

As far as getting dressed etc…there came a time for us when mom didn’t change clothes.  Unless her clothes were soiled or dirty she didn’t change. We just had very comfortable sweats and shirts that could be worn all the time.  Mom hated the changing clothes process and in an effort to keep her as comfortable as possible, it became one of the adjustments I had to accept. Actually made both our lives easier. 

As another responder said, I finally got to a place that trying to solve the mystery of her thoughts and language was interesting, entertaining.  Although I sometimes felt so sorry I couldn’t figure out what she wanted/needed.  Keeping her comfortable was the best I could do. 

Early on in my primary caregiving experience I’d call it “the twilight zone”… almost all I could say to anyone that would listen was how weird it was.  

Sorry for your struggles, this is very difficult. 

carter129

Thanks again for each and every one of these kind and thoughtful replies. I guess my family is trying to apply logic to a situation that doesn't respond to it. 

At this point, we're caught up in trying to find out what triggers there may be so that we don't make things worse and can accommodate her needs as well as we're able. She's living with her granddaughter and husband right now, having exhausted the resources of other relatives who have to go out to work each day and can't leave her alone in the house (granddaughter and husband work from home).  

We realize this is probably going to reach a point where she needs more than they can provide, but we want very much to put off that day as long as possible - hence the ongoing attempts to understand her, and head off behaviors that might be dangerous. She has already begun wandering during the night, and locks have been put where she can't reach them to open the door. As I said, we've never had this in our family and it's pretty heartrending. 

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carter129

Her physician tested her memory, which test she failed - although, as she said at the time, she knew her name and where she lived. He wanted to do further tests but she declined and we didn't press it. The family is divided as to what to do next, having no experience at all in dealing with this. We know that she very decidedly did not want to go into any sort of facility, and when the issue was tentatively raised, she became very agitated and upset. No one wants to do anything that would make her miserable and separate her from us, but it's beginning to sink in that it may come to that regardless of what we want. 

In the interim, it's an odd experience for us in trying to communicate with her. She speaks quite well, but what she says is frequently contradictory, confused, and seems to be half dream/half reality. She said recently, about a neighbor, that he was a delightful person, so kind and helpful, and that she enjoyed speaking with him. An hour later she said that he was unbearably bossy, everyone knew it, and people just groaned at the sight of him. She has begun to tell long stories that we recognize as containing some genuine memories (but way out of chronological order) and some fantasies that she may have seen in movies or read in a novel. 

ZackFootInMouth

These are signs she needs help, and soon.

If you want logic, I can use a computer anecdote: concepts stored in the drive (memories) can still be sent to RAM (short term storage where bigger and complex memories have to be broken down into chunks) to then be fed and processed by the CPU into the various senses of the body (speaking, listening). But her RAM is corrupt, not breaking down the idea properly and, working in reverse, maybe even assembling what she hears incorrectly.

Your mother is in there, and you have a key, but there's a broken lock in your way.

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Emily 123

Yes, My mom recently combined my father's death with that of her cat.  She certainly did not wake up to find him expired at the foot of the bed, but I just agreed that it must have been a shock.

I did have more success with her using something as intended if it was the same item or similar to what she has always used. New environments and things are a challenge. She never used the new things I bought for her room, I suspect because she didn't recognize them as hers or hadn't used them routinely in the past.

GothicGremlin

Hi Carter -

You hit the nail on the head - "I guess my family is trying to apply logic to a situation that doesn't respond to it." 

I tried that same approach with my sister as well (she's later stage 6 now and in memory care), and it worked for the most part in the beginning, but somewhere around mid-stage 5, it was clear that applying any kind of logic was going to make matters worse. At one point she'd wear several pairs of pants at once. I'd tell her that we usually only wear one pair at a time, and she asked "why?"  Trying to convince her she was wrong would not have helped, so I just left it alone. Why did she think wearing two pairs of pants was a good idea? I got nothin'.  Logic failed me.

And yeah, I agree it's really weird to have this person in front of me who sounds like my sister, looks like my sister, has the same mannerisms as my sister, but is completely alien to me in so many ways. I just try to meet her where she is.

"She speaks quite well, but what she says is frequently contradictory, confused, and seems to be half dream/half reality."

A few weeks ago Peggy said to me that our dad brought her some chocolate candy. Well, he passed away years ago, so this is not possible. She said "I know he's dead, but he left these chocolates on the table."  So yeah, both of these things cannot be true at the same time. I just went with the flow. Schrödinger's Dad, I guess.

  

cinnerwags74

Has she been checked for a uti?? I'm our mothers caregiver, and she demonstrated some of those behaviors among others such as becoming violent, aggressive and highly anxious to name a few wherever she h as s a uti. Just a thought

carter129

Thanks again to all of you for replying and being so thoughtful and helpful. 

We've been so focused on trying to understand my sister and provide her with the best situation possible that we've forgotten to consider the effect on those who are caring for her. It says a lot about how much her family loves her, that in our concern for her we've somewhat forgotten about ourselves. But the strain is beginning to show.

Everyone has scrambled to provide whatever they were able, and her present but clearly temporary situation of living with granddaughter and husband has come about simply because they're the only ones who work from home and can be with her during the day. When any mention is made to them of other possible arrangements, they both begin to cry and it's pretty heartrending. We could all join in and wail, and most of us want to, but that wouldn't help either. I feel great empathy for everyone who has gone through this kind of thing. 

She has a good doctor who has looked after her physical health quite well, so I don't think there's anything he would have missed such as a UTI. I know we're reaching the point, if not past it, where her wishes about things like further testing will have to be set aside. We'll also have to factor in the wear and tear, emotionally and otherwise, on those who are caring for her. Two of her sons are in the process of trying to rearrange their lives in a way that will make it possible for them to take on some of her care. It looks increasingly like that isn't in the cards. Thanks again to everyone here, and my sympathies to all who have faced these kinds of decisions.

gampiano

Hi Carter, 

All the comments are so valid and ring true, so I won't be a long response. Regarding a UTI, please ask the Dr. if you can bring a specimen to the lab for testing. My mom, who lived to be 103, had many of these infections, and she was asymptomatic except for agitation and confusion. I strongly urge you to monitor this, as most elderly people do not exhibit what we consider to be the common symptoms.      

liz3538

I am at a loss of how to help my DM.  She has it in her mind to use the restroom anywhere and everywhere, sofa, dining chairs , on top of dog kennel.  We are at a loss.  We constantly remind her , or ask her if she needs to “go” but unfortunately we don’t always get it right .  Has anyone experienced this behavior and does anyone have an idea what we can do.  My DM would be horrified to know she’s doing this .  She’s also extremely combative which is also nothing she ever experienced before. 

TIA for any suggestions..

Ed1937

Liz, welcome to the forum. Yes, my wife did that. I had to watch her like a hawk. If I caught her taking her pants down to sit on the couch, I'd tell her she couldn't go there and she'd say "Why not?". There just doesn't seem to be anything wrong with that to them. It's perfectly normal in their minds. I don't think there's anything you can do except put her on a schedule every two or three hours, or watch her like a hawk. Then hope you catch her. Putting incontinence pads on the furniture can help, but that's not a complete answer.