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sundowning or something else? Im not adjusting well.
Posted: Monday, January 7, 2019 9:15 PM
Joined: 1/4/2017
Posts: 34

Moms had another sudden drop. Again in the span of what AD is, shes not in the final stage, I know this, but everyone around her agree shes had a sudden decline. We recently went back to the years geriatrics appointment and they did the 3-minute paper test/assessment and the nurse prompted her in places I know they arnt supposed it, it annoyed me. And then I was told she was right where she was three years ago. Yeah... Im sorry that answer is not going to work for me, and heres why. I gave them a bunch of examples and the doctor was still like, oh well as far as the tests show she’s got the same cognitive functioning. Well maybe if you asked more than a handful of questions, you might see the issue. Instead of asking her to fold a piece of paper and drop it on the floor (in which the nurse watched her fold the paper and then REMINDED HER to drop it on the floor). Why don’t you asked her to stand up, fold the paper, and then drop it. I guarantee you the act of standing will be all she does. Ask her to write her name on it, fold it, and drop it. Without reminders she will only write her name and then ask you what the next thing was. SO FRUSTRATING.

Mom forgot who my daughter was over the summer, just the once. We all went to the beach, a friend and his daughter joined us. Mom thought my daughter was one of his kids.

Common sense is declining, things I know she wouldn’t have done just in June she does, and then doesn’t know why she did. Sometimes you can get her to talk it out and she knows things, but cant connect them to her own behavior. For example, we don’t have laundry baskets, we put dirty clothing directly into the washer. Run it when full. If its running and there was more dirty clothing that did not fit, it sits on the floor in front of the washer until that load is done. She will pick it up and fold it and try to put it away.  If I ask her what shes doing, she doesn’t know. If I ask her, why do you think those clothes were on the floor? She can tell me, they were dirty. If asked, do we fold and put away dirty clothes? No. Then why are you picking up clothing you know is there because its dirty, folding it, and putting it away. She has no idea. Its like she no longer thinks, why are these clothes on the floor, there must be a reason. She just picked it up and off she goes… no thought to ‘why’ am I doing this, if that makes sense?

And it’s the same thing with soooo many things suddenly. Yes, over the past few years there were occasions where similar would happen, maybe once a month? Now its all day long every day. She wont stop touching things. Im playing a game of cards with my kids, which she won’t join no matter how much we ask her to. But she will sit there watching, and start ‘fixing’ the cards on the board, moving them around. ‘oh I’m just straightening them’ only she didn’t do that at all, she moved my cards to another pile. She constantly will tell me she’s doing something, that has absolutely nothing to do with what she just did. For example, she will go to the kitchen, drink some water and start looking in the cabinets ‘do you need something mom?’ oh Im just checking the time.  Sigh, no your not. And the things she lies about now.. that last example I don’t count, I mean maybe she just forgot what she was doing and there is a clock in there so that’s what she said, ya know.

But the outright lieing… like she has a habit now of digging in her gums with her fingernails, shes already lost a tooth because of this, which really bothers her, but she keeps digging. I don’t think her thinking connects the two, no matter how many times a day I tell her to stop, this is damaging your mouth. So now if I see her doing it, I just touch her hand. She knows why, but half the time, while she’s still got her finger in her mouth ‘I wasn’t doing it’. Why lie? Her fingers still wet and her hands in her face while she starts telling me “I wasn’t” There is no upside to bothering with the defensiveness…. Its not like a kid trying to avoid a punishment, touching her hand is the end of it. I don’t bother explaining why or ‘telling’ her anything anymore. I just touch her hand while it is in her mouth as the reminder, that’s it.

She plays cards with a ladies group, they know her situation. I pick her up at the same time for three years now. But now she paces, gets up and looks for me out the window, and trys to get the ladies to call me incase something is wrong. This summer when the calls started, she would say ‘the ladies are wondering if your coming’ while I can hear them telling her, no we don’t wonder, you were worried. “oh yeah the ladies want to make..No your worried not us -name-, stop telling your daughter it is us, its you.”

She wont sit still. She used to love puzzle books, once she stopped being able to read novels. Now she might find one word in a word search, get up, go to her room, find a new pencil. Come back, sit down, mutter to herself, might not find anything, go get water, go look out the window… just up down up down. If I ask her if she needs anything, its always no, Im just… If I ask her if she wants something else to do, oh no I have my puzzle Im just…

During the daytime its not so bad, but after dinner time it really ramps up. And she suddenly starts acting like she has a bladder infection. She goes and pees 4 times an hour. I tried to lock the bathroom and wrote a note ‘you just used the bathroom at Xtime’ thinking it was somehow a memory issue, like she was up and thought oh I haven’t gone, I better while I am up. Yeah that didn’t work, within 20 minutes she was moaning in her chair, making noises like she was in pain and walking back and forth to the bathroom muttering to herself, I have to pee, ohhhh god I have to pee, Im going to pee myself. She does not have a bladder infection (I have the test strips) and she can sleep for hours at a time, and next day, was fine. During the evening shes back up pacing, going pee a bunch.

Some days it feels like she doesn’t do anything but follow what someone else is doing. She stands in the kitchen staring at the wall while I do dishes, shes not even trying to talk to me, she just stands there. Will follow me into the living room and ‘pretend’ to do a puzzle book but really is just staring at me while I read or watch tv or whatever. If I am studying (yeah I went back to college) she will pace behind me, try to read over my shoulder, and pretty much do a litany of things that really bother the sh*t out of me and make it impossible to finish my homework.

But anytime I try to get her to do an activity to keep her busy, she will only do it if I do it with her, or possibly she will start to do something but it lasts 15 minutes top.  And I mean simple things like coloring a coloring page. She goes to a senior daycare program 3 days a week and everyone there says she doesn’t exhibit these behaviors at all. But the activities they do are typically the same things she does here, so wth? Also, anyone else annoyed by the hours of these programs? ALL of them here only do 3 days a week 9am-3pm. Who does anything where those hours work for them? Its very frustrating, everything about this is.

But her sisters are finally on board after a few years of bitter behavior on their part, so that’s a plus. But it came down to me spelling out really clearly that I understood perfectly they were the ones taking advantage of me in this relationship. None of them will take her, and nursing care is expensive, and none of them WANT to have to be in charge of keeping up with her needs. I made it clear that they could behave and have some appreciation OR they could be salty and treat me like I was inept and always looking for an angle to get moms money (HA!) and I would start packing moms things up and they could just tell me which of them I was driving her U-Haul truck to. FYI they are retired, so not like it would affect work life or something. I on the other hand am in an accelerated college program, work as a tutor, am a single mom to two busy teenagers, one with her own mental health issues, and I volunteer when I can for my own sanity. But you know, those retired sisters couldn’t possibly find time to balance Moms needs… yeah okay I am salty about it. Hahaha

So, okay I rambled on (thanks for letting me) does this sounds like sun downers (I have a book somewhere I keep meaning to read) or is it something else? Just common progression of AD?

Thoughts and suggestions are always appreciated as I don’t have the time to get to any of the support groups here.


Posted: Monday, January 7, 2019 10:08 PM
Joined: 10/25/2018
Posts: 239

Sundowning is exactly as the name suggests. When the daylight starts to wane, and the shadows start appearing on the walls, the symptoms/behaviors get worse. Sundowning is a symptom of dementia, not a diagnosis. Predictably it's worse in the winter months when there is less daylight.
Posted: Monday, January 7, 2019 10:25 PM
Joined: 9/8/2017
Posts: 1931

UpbeatWhiner wrote:

...does this sounds like sun downers (I have a book somewhere I keep meaning to read) or is it something else? Just common progression of AD?


From my own experience, yes, it's sundowners and part of the progression of AD.  I remember a lot of the things you describe so well, and reminds me of my father in 2015 thru mid to late 2017 when the disease seemed to be at its peak for my dad.  The big turn was in 2017.  Everything you describe with how you feel is very much like how I felt during that time.  It is very frustrating.  
I look back now, and I believe it's not so much lying, but my father just had to come up with an answer, if that makes any sense.  
As a child, I struggled with a learning disability, so when my father would "lie" I realized it was more like trying to come up with any answer that got him by.  I really think he just didn't know.  I compare it to my experience as a child.

This is hard, but I suggest don't even ask her anything that she's not getting anymore, because she is at a decline and she's getting more confused.  Most likely her short term memory is much shorter now.  She's forgetting more rapidly.  Also, I think she is suffering from anxiety.  Is she seeing a psychiatrist yet?

Posted: Tuesday, January 8, 2019 7:06 AM
Joined: 2/29/2016
Posts: 1268

Agitation and restlessness as the day darkens and shadows form  is sundowning and is a typical sign of dementia. The other things you describe: inability to perform multi-step tasks, following the caregiver around, inability to initiate activities, not following through or completing activities (word search, puzzles), forgetfulness, not knowing how to do things she could do previously like household tasks, rummaging, confabulation...all typical signs of advancing dementia. Signs and reprimands don't work. Validation and redirection can be more successful; if you aren't familiar with the Validation approach, check out Naomi Feil. The senior center may not report the same behaviors because they have training on how to keep her engaged, also she is receiving some social stimulation.

The picking at the gums, causing herself injury, is concerning. It could be a repetitive behavior; people with advanced dementia may pick and scratch. It could be a sign of mouth pain; perhaps consider a dental check-up. It could be a self-soothing behavior, in which case a geriatric psychiatrist could help with medication. It does sound like she has a lot of anxiety,

 Here is a link to the stages of dementia. This is specific for Alzheimer's but other forms of dementia may follow a similar progression. There is a lot of overlap; a person is considered to be in the latest stage for which they are showing symptoms, so a person with signs of both stage 4 and 5 is considered to be stage 5.

Dementia is more than memory loss. It is a brain disease that attacks memory, cognition, logic, and executive functioning. Memory loss, confabulation, poor decision-making, impaired reasoning, and slowed reflexes are symptoms of dementia. Apathy, depression, and loss of empathy can occur. Eventually physical functioning is compromised. 

You have a lot on your plate: single parent, working, college classes, caring for your mom. Caring for dementia is hard and gets harder as the disease progresses. It does get the point of not being able to leave the person unsupervised--sounds like you are there--and eventually incontinence, immobility, and inability to perform self-care occur. Medication may alleviate some of the current behavioral issues but the disease will progress. Perhaps you should consider looking into memory care facilities so that you have a plan B. 

D in law
Posted: Tuesday, January 8, 2019 3:11 PM
Joined: 4/24/2017
Posts: 513

Stop trying to fix it.  You're not adjusting.  She's not lying to you! Her sense of reason and cognitive function is messed up, right?  Stop trying to fix it logically, because you can't.    Do like you did with the touching of her hand to make her stop picking.  Telling her didn't work did it?  Touch did.  Find some other activities that make her feel independent, safe and important.  There's usually triggers around the sundowning, maybe you can try to identify them and make an adjustment to the family routine.   Oh, and maybe get a laundry basket!!  Why would you want to constantly, everyday, be bothered by her folding dirty cloths, OR  just let her do it and don't let it bother you so much!!! She thinks she's being useful, so to correct her for it is really demeaning.

Peace be with you for better days.

Posted: Tuesday, January 8, 2019 3:48 PM
Joined: 5/16/2017
Posts: 320

Agree with D in law.   The sooner you stop trying to figure out ‘why’ she is doing something, the better off you will feel.   Let it goooooooo

There IS no ‘reason’ she is doing anything. Her damaged brain is like an out of whack pinball machine.....neurons are bouncing back and forth and causing behaviors that have no  ‘nomal brain’ similarities and are random.  She is not ‘lying’ in the true sense of the word.   She is doing the best she can with what she has to work with

The answers of ‘uh huh’ and ‘imagine that’ work better than trying to have a normal conversation.   Anything my mom wants to do that are not dangerous or destructive are just fine with me.      I drove myself crazy trying to figure out ‘why’ she was doing things for about 3 will never accomplish that...change your reactions to her behaviors, because you wont change hers

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