What do you do if your loved one doesn't/ won't/ can't listen?

Mapotter: You're welcome.

Continuation:
(geez louise, they used SEVEN pills in 3 months!!! The way the doc thinks, they're doping her up! Fall risk? She hasn't had a tumble in over a year, and now uses a walker, but also goes to bed shortly after the dose, if she gets one! She's more likely to hurt someone or herself when she is so worked up!)

Anyway, I wanted to point out these two things (UTI does NOT have to show symptoms and how sundowning CAN be at anytime.) The UTI can trigger/make the dementia worse that usual. Generally sundowning gets the person in a rut of sorts, where the needle is stuck on the LP. If one is lucky, the "needle" can be bumped (redirection) and move on, but sometimes it is truly stuck there and it is very hard to move it. For now in our mother's case, the Lorazepam seems to work for those times. It is a very mild dose.

It is not clear how long your mother has been taking Lorazepam (3x/day sleeping all day sounds like a bad call by the doc), but perhaps she needs a stronger dose or a change of medication? That mild dose mom has usually kicks in within a very short time - there is no need to wait 2 weeks for it to take effect for her. If this odd behavior is happening all the time for your mother, then definitely have her checked for UTI AND check the medication(s). It is possible she's entering a new phase, but you can explore these options and see if anything helps. I would also recommend that you avoid going outside in the afternoon (unless you find/fix the underlying cause) - that way you don't have to worry about getting her to go back in if she gets into this state again! Morning trips/outings only for now...on...

Mapotter;

1) "the hospice nurse says she doesn't have symptoms of a UTI (urine appears and odor)." THAT is ludicrous. One can have a UTI without "symptoms" - I have and only found out after a regular physical urine test! Mom's most recent UTI urine looked and smelled normal to me, but a test revealed UTI.

2) "Plus, the nurse would have to do a straight catheter to get a sample, and that's not going to happen." Can your mother not ever pee in a toilet? The doc office just put a plastic thing under the seat and mom just had to pee like normal. If catheter only, I would get it done - perhaps someone else can do it better (some people stink at drawing blood, other's a like mosquitoes! same for caths.)

3) "Mom's behavior is not that unusual" I am perplexed by this statement because your initial post was about this aberrant behavior at 2pm? My impression was this was NOT her norm and is why you were questioning it.

4) "hospice is not going to do anything anyway if she had one" Given that this was in a response where you mentioned TIA, I will guess this comment is about the TIA not the UTI... However, my understanding is that while hospice does not "treat" the underlying hospice condition, other conditions may possibly be treated if unrelated to the hospice condition. I don't recall if you mentioned why she is on hospice.

I have to agree with others (and your instinctual feeling) in that this sounds like sundowning. The time that it occurs is not really that important. GENERALLY it occurs/starts later afternoon or into the early evening, but there is no hard fast rule. Mom's thing (living alone at the time, but we had some cameras to monitor things) was a marathon loop checking the door lock, the side lights, the dishwasher and the LR, over and over. This generally started around 830-9PM and continued for 1 - 1.5 hours, well outside the "norm" for onset, but it was definitely an OCD sundowning issue.

So, now that she is in Memory Care, generally she is very easily redirected. They all kinda like mom in that she is easy to manipulate. Several months ago on a Friday night I got a call and was told she was in quite a state, demanding to get out, trying to open all the doors, setting off the alarms, she HAD to get out, she had guests coming and she had to get home... Not sure what they expected me to do, but I headed up because I felt bad for them (several hours of this!) By the time I got there, they had finally got her settled with a magazine in her room, so I chose to let sleeping dogs lie... no sense in stirring anything up! We had appointment already for Monday and I was already going to ask about getting a UTI test done - this just solidified that request. Sure enough... UTI.  

I had to plead several times after confirmation of/Rx for the UTI for the doc to prescribe Lorazepam, and especially since this issue usually happens after office hours, nights, weekends, when we have no access to Doc/rx (doc's afraid it will mask the UTIs, oh, it can cause unsteadiness, every damn excuse she could throw at me!) I finally repeated this is an "as needed" dose, NOT for everyday use AND it is not fair to the staff, the other residents, mom or me that we have to put up with this ranting!!! Next was going to be a demand for the doc's home number, so she can go calm mom down. Until the antibiotics really kicked in, she had several bad evenings, but the Lorazepam helped calm her. They do not run for the pills first - they always try to redirect, but will give in after 1.5 - 2 hours (I would probably give it after 20 minutes or less!!) Anyway, staff requesting some paperwork from the doc triggered the doc to rescind the orders. Great - we have the meds, but they cannot dispense. I told the staff that I will come give it to her if we go this route!! Sure enough, just recently she had another melt down, same deal - guests coming, had to get out. I had to make calls that night and next morning to get it reinstated (to be continued...)

I'd say you are doing everything right.

Ironically, that may be extremely depressing for you. You're doing everything right and it's not working. Sorry.

But you are, in that you are meeting your mother halfway, trying to connect with her, and then using that connection to lead her to where she needs to be. That's the "correct" approach.

I could have slapped your brother myself, let's set him to one side. Except, the "you need to calm down," while exceptionally annoying in the context, is partly part of it.

Do what you're doing, only with one refinement. When you're engaging with your mother - on her searches, or when she wants to "go somewhere" - try to forget completely about the real agenda so that you can focus more on what's going on in her head, and see if you can see where it might be coming from. She has a formless idea that she needs to be somewhere or do something but she doesn't know what it is and she can't quite grasp it.

You may already have been doing this - discussing with her where the 'other baby' might be, identifying which baby we're talking about here, exploring what relationship your mother has with the baby.

The best example I've seen of this technique involved a dementia support worker connecting with a man who couldn't find his father. It got quite long and involved as a story line, but essentially the DSW tracked the man's memory down to the workshop where his father had (in real life) been an engineer, and reminded the "lost boy" that his father often had to work late.

The key seemed to be genuinely concentrating on where the man was in his own head. Doing that after many years' training for an eight hour shift is, of course, a different kettle of fish from doing it day in day out in summer heat when you're getting anxious about heat stroke... Remind me what support you have with looking after your mother?

My mom is messed up with when sundowners usually happens, for her it's usually between 8am-3pm, and what gets her fired up is, she wants to go home, and starts walking outside but she is home, it takes a lot of patience, sometimes we drive her around the block, she's looking for home, sometimes she tuckers out after alittle bit and sometimes it's hours, we just do the best we can, we also are trying a new medication to help with anxiety, she's been on it for a month now, and it seems to finally be helping, Peace❣️

Ugh! Sorry I can’t offer any advice since my situation is different but wanted to say hang in there you are doing a good thing and your not alone. Hugs! Hopefully one of these other good people can help you with some wisdom. Caregivers have a hard, frustrating and often thankless job, but know we’re here for you.

As her brain is broken perhaps use a lure to get her inside and settled down, e.g. ice cream, fav TV show, etc.

The comments from your brother sound very familiar, altho' it's from my sister. She hasn't cared for my mother for probably two decades! But she loves to tell me how she had it worse. Most people I know start sundowning at 3ish, so 2 fits the bill. My mom sleeps late in the morning, so her sundowning actually starts when the sun goes down in the summer. I have gotten so frustrated a couple of times that I actually said to her, "You're sundowning!" I do NOT recommend that approach. The suggestions above are much better.

Your mom had more than 1 child so if a baby is there then there must be another one somewhere - I know it is hard to follow the logic - when my mom was in hospital she heard a metal banging so 'answer the door' so after 2 times I said was just the wind catching the screen door & making a sound .. she didn't bother about it again because she had it explained away

Sundowning can happen at any time but more often late afternoon or early evening so just because it's 2:00 doesn't mean it's not a sundown episode - it takes some time to learn the art of deflection - 'it's time for XXX' so that can be price is right, ice cream, pills, drink of water etc or 'I think your YYY is ready now' - you have more patience than me congrats to you

As Sundowner's progresses, so does the time it starts.

Think of it as having to change the clock with day light savings time.

Some times it will spring forward sooner or it will turn back to a period of time that refers to Sundowner's.

You can't control when the clock decides what time it is for your Mom. Just be prepared.

This is all part of Dementia. They get stubborn. My Mom used to look for a baby at the AL. I told her there were no babies since only adults were allowed to live in her building. Of course, she didn't believe me but she believed the CNA. God bless you for walking all that time with Mom.
I looked up Lorazepam and read thexe side effects

"Can cause paranoid or suicidal ideation and impair memory, judgment, and coordination. Combining with other substances, particularly alcohol, can slow breathing and possibly lead to death."

It also said it was a sedative for people who suffer from seizures. Does mention anxiety too. Maybe its time for a different medication for Mom. This getting up and down is a sign of anxiety and is not good for her. Does Mom live alone? If so, at this stage she shouldn't.

If your mom was looking for the baby, you say the baby just went in the house. Don't say ma there's no baby. Wont work. Some people might get hung up on oh that's a lie, but you cannot waste hours outside looking in the bushes in the heat. You have to do something. You meet them where they are at. Never say it's not real, not happening, you don't see that etc.
Once inside, redirect. Oh wow look your program is on! Have a seat. Tonight's program is going to be great. Youve been looking foward to this all week! In an excited tone.
If where's the baby continues, you say, ma you kissed the baby goodnight before she left. Dont say the baby is now 54 years old, there's no baby. That will only work to agitate them.
You have to try to be in their world to coax them sometimes. Then redirect. That is what they do in nursing homes all day every day.
Talk to doc. Maybe you can hold off on any anxiety meds until right before a visitor, and limit the visit time to an hour, 30 mins. If family starts un, aw whats the big deal, they can take it or leave it.
Or hand over mom to brother at end of visit. He can get her ready for bed and give you a break. Then have a good chuckle and watch as he struggles lol. Good luck.
I was visiting dad sitting on the edge of his bed. No chair. Resident comes in. Shouting, about to slap me. Said I stole her welfare check. Saying I didn't, did nothing to convince her. Only agitated her more! Nurse hears this, and tells her we put it in your room. Let's go get it. Its safe. She calmed down & left. I was greatful because I was cornered. I'd have to do a double half gainer flip over the bed to escape. I made sure I was never in a corner again. Learned my lesson. lol.

I know what you mean when you say that your mother has one thing on her mind, like staying outdoors, and you can’t get her to go indoors. It’s like a mental freeze. She can’t get that though out of her head. My mother will experience the same type of behavior. You can cajole and invent stories but it just doesn’t matter. I call it “the train is stuck in the station” syndrome. It seems that each person is different and what works for one may not work for another when dealing with these situations. There’s no way to reason with the person. Sometimes you just have to curtail activities that create the situation in the first place. Taking her out less often may be one way to limit this from happening. Does she really benefit from going out or does it cause too much excitement? I try to keep things calm and find other things for her to do like working puzzles or doing “busy work” of some type. Unfortunately, there are no real solutions that work every time. It’s a trial and error process.

First..I'll bet since it is you and your brother the "other baby" she was looking for would have been one of you when you were babies. Just tell Mom "the other baby is inside" have a doll, there are some pretty life like dolls on the market that might help. And it might help calm her even if she is not looking for a baby.

Second..I am maybe a bit concerned with the last part of your statement. You said you gave your Mom Lorazepam at 4:30 and you left at 7....who is there looking after your Mom when you leave? I do hope she is not alone, sedated and not able to walk unaided. There is a real possibility that she might try to get up and leave. And if by chance she does make it to the door it does not sound like you have a ramp for easy accessibility. (By the way you might want to get a ramp put in or if there are not many steps a portable ramp would be good)

My Husband used to get a bit "squirrely" in the later part of the afternoon. I always equated "sundowning" with more of an exhaustion both mental and physical that comes with the later part of the day. Yes it has something to do with the sun being lower in the sky and the waning of the light. It makes vision more difficult. But all that is a process in the brain and the brain is not functioning properly. So I never really thought of it as a "time" of day but of a "time" in their mind. I did change all my light bulbs to the brightest LED bulb that I could use. That increased the light but the LED also seems to be a better light, not a yellow light.

Oh, a little hint for you for the car. Put a heavy duty garbage bag on the seat of the car. When she sits on the seat, even if she will not / can not get her legs in you can very easily turn her in the seat as the plastic will slide on itself and you can easily pivot her in the seat just by lifting her legs in and pivoting them in.
I cut the bottom off the bag at the sealed part and left it flat, the plastic on plastic slides easily.

I was rewatching a few Teepa Snow videos on the weekend - have you ever seen any of them? I'll link three that you may find helpful:

https://www.youtube.com/watch?v=ZfSaSmXqs6Q
https://www.youtube.com/watch?v=xylQt7TxDwo
https://www.youtube.com/watch?v=ZpXeefZ2jAM

For starters... learn to be a good storyteller. In your post, you mentioned she was looking for something (baby). Tell her the baby is inside and she needs you. Have a doll handy. Whatever it is she is looking for, tell her its wherever you want her to go.

GIRL I hope we can get some Answers on this one everything that you were saying is something that I am going through with my mother at times she’s like she’s 16 in her head because she thinks that she can hit the road go up and down the road she can still drive and things like that and she can’t but the worse is she wants to get a cuties car she wants cute close she wants to wear make up and my brother is sitting here she’ll scream at me just called Wayne just give me Wayne and that’s her Oldest and he don’t want nothing to do with her so I am in the same boat that you are we need answers every test that they have done on her they tell me shes fine She has always been a stubborn woman but it’s worse now just wants to argue and I’m just not gonna do it

I probably shouldn't even post because I have nothing to offer but sympathy for your situation and view it as a potential scenario my sister and I may be dealing with soon with our mother. I'd like to smack your brother for his patronizing comments and lack of understanding, though! Your frustration must be overwhelming. If it's a phase of the disease, maybe it will pass quickly. Good luck to you.

Have you visited the Alzheimers Reading Room site?
https://www.alzheimersreadingroom.com/

They talk a lot about redirecting, offering choices, moving your viewpoint into Mom's world (no matter what she's seeing) rather than the reality as it looks to you. Lots of helpful info.

On the specifics of your post:

She sounds like someone accustomed to being independent and making her own decisions -- and now she can't remember that she falls when unaccompanied.

Any chance that she would use a walker? Or is she long past that?

"Let's go somewhere" right after being out -- that suggests several things. Sometimes people say 'let's go' because they're uncomfortable where they are ... in their heads, rather than in their real-world location. Sometimes it's a code-word for anxiety. I don't know what your Mom's medical condition is, but sometimes it's also an expression of a wish or awareness that death is coming.

"Looking for" someone or something -- the other baby, in this case -- can sometimes mean she's recalling an incident that feels unresolved to her. Sometimes it can help to enter her fantasy and tell her a 'therapeutic lie' to help resolve it. "Oh, the other baby? They took that baby home awhile ago." or "It's okay, they found the baby and everything is okay."

If you can get a Physical Therapy consult visit, the PT can teach you ways to cue your Mom for such motions as going up steps or getting in the car, so that even if she's not understanding what to do or not remembering how to do it (which happens, even for such simple things) you can help her body do the needed motion.

I fear for you and her getting up those steps.

Lots of great advice here. It sounds like some delirium might be involved (looking for the other baby in the bushes, etc). You might want to ask her doctor about that and about the lorazepam and maybe slowly weaning her off it to see if that helps.

"Drugs such as benzodiazepines or anticholinergics and other known precipitants of delirium should generally be avoided. In addition, benzodiazepine or alcohol withdrawal is a common preventable cause of delirium." Link: www.ncbi.nlm.nih.gov/pmc/articles/PMC3065676/

So, benzodiazepines (such as lorazepam) can cause delirium, but so can withdrawal. Oh dear!

See also: www.ncbi.nlm.nih.gov/pubmed/16394685

Above copied from my post on this thread https://www.agingcare.com/questions/how-long-does-delirium-last-in-a-dementia-patient-once-they-return-home-440902.htm

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I wish you all the best. I know this is hard!

I found this video today. It's what Teepa Snow is saying, but I thought it was much more clear with more practical suggestions.

https://www.youtube.com/watch?v=iyk9a9hM_EI

So sorry you had such a stressful afternoon with your mom. It's a double hit when your "supporting" elements don't acknowledge your challenge.

My experience is with vascular dementia so I'm not sure how helpful my response will be but I think you were dealing with an anxiety driven afternoon. My father would go on endless searches and have panic attacks when he stopped taking his anxiety medications.

I've read that people don't follow simple requests because they cannot understand the language or they can't remember in the moment how to do something. My dad would walk up to the car and then just stop. I would open his door and if he didn't get in I would open the door behind him and sit in the rear seat - Dad would usually get in the car after he saw me do it. Sometimes Dad would sit down but didn't put his foot in the car, so I would pick my foot up and put it in the car and then ask him if he could do that. This didn't happened often and I could never "predict" when it might happen.

It seems that you tried mostly giving Mom reasons _she_ should want to go back inside. She's been a mother and grandmother for a lot of her life. Did you try any reasons that she needed to go inside for your brother? Or maybe you twisted your ankle? Or to check a pot on the stove?

It sounds like trying to please Mom is running you absolutely ragged. I can tell you that my own mother could “sundown” at 11AM. She always had the shades in her room pulled down tight so telling her it was 11AM and the sun was out did no good. People with dementia can be stubborn and impulsive and most are. Their emotions are right at the surface; fear, sadness, anger and even combativeness.

More than trying to reason with her, maybe distracting her would work. “Come on in, Mom. I’ll make us some ice cream sundaes. Doesn’t that sound good?” Or, “Get in the car, Mom. We’ll stop for some McDonald’s on the way home!” Or “We’ll drive through that nice park past the lake!” I know it’s hard to do when you’d like to strangle them for being obstinate, but as my mom always said, you catch more flies with honey...

On some level, Mom may know she’s jerking you around, but chances are she doesn’t. Like I said, impulsiveness is part of dementia. My mom would walk out into the hall without her walker and promptly take a flyer, and when I visited, she looked like she went 2 rounds with Mike Tyson. Then, she’d lie to me and said she had t been out without her walker. They can reason enough to tell tales to keep themselves out of trouble. Just like a child.

Does this Teepa Snow video help at all?

https://www.youtube.com/watch?v=ZpXeefZ2jAM

I am going through something similar except in the opposite direction. My husband has Vascular Dementia from a stroke a year ago, he also is a veteran with PTSD and other health issues.
He has decided that he can't breath anymore and that he can't go outside or help me on the farm. After a visit with his PCP and his psychiatrist and psychologist, he was told that indeed he does need to move around to feel better. New diagnosis is MDD, Major Depressive Disorder.

I told him he needed to get out of the house and he needed to see the animals he cares for so much. He refuses and insists that he will just collapse from exhaustion.
He told the doctors that he'd make the effort, once home .. he refuses.

He won't listen. He won't act.
I angered him by telling him that if he stayed in bed ALL day every day he would just get weaker and he'd need a bedpan and a wheelchair. He doesn't believe he can help himself at all.

The doctors make it sound so simple.
But they aren't here to watch him NOT listen or act.

My Mom is intermittently forgetting the mechanics of walking up steps or activity that requires her to lift her legs. Her Dr saw no physical reason and felt it was her progression of ALZ. She fall/sits sometimes and can’t think of how to get up if I try to show her or tell her she won’t and gets angry. I make suggestions and wait her out sometimes 20 minutes or more. As far as walking her all around my mom is a fall risk so I would help her look at first then redirect her or tell her I need to sit down I’m tired or hot. My Mom also ask about her foster babies so I try to get her to talk about who she’s looking for sometimes it gets focus off the action of looking to talking about the baby.

Well, I am not sure I am the best person to give you an answer, since I am starting to have similar problems with my husband. I just wanted you to know, I too feel the frustration, and I wanted to say to you. You have done everything you can. You can't be expected to be superhuman, it sounds like it may be time to put mom in a care facility. I don't know how you can be expected to do it all, and still be civil.

CAll her doctor. This is a change in mental status. It may be a UTI. She may need more or different meds for agitation.

I've heard the " c'mon, let's go" from so many folks who deal with dementia patients. It may be that notion of " going home" that means something to them that we have no notion of.

Teepa Snow may have a video on how to best deal with a situation like this.

But you can't expect to reason with someone with dementia.

I'm so sorry you're going through this!