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I am at my wits' end as to what to do...


I'd say this was Sundowners, but it happens way before sundown, like today around 2:00. Mom was fine early this morning. When we were leaving a store it started. I tried to get her in the car, and she wouldn't lift her leg to get in. I had to pretty much pick her up to get her in (and that wasn't easy!).


Right after we got home, she wanted to go "somewhere," "C'mon, let's go," she said. Even though I told her we just got back, I decided it wasn't worth the fight, so I took her for a ride. I didn't go where she wanted (obviously, I didn't know where that was....) By the time we got home, she was not happy and was starting to cry.


Then my nephew came with his infant son. That seemed to calm Mom down as she was talking to the baby. We were sitting outside. Then Mom wanted to get up to go look for the "other baby." She can't walk unassisted, so I had to walk with her. We went inside, she looked in every room. Outside, she looked behind the bushes. She opened or tried to open car doors. Then we'd sit down for another few minutes and she'd get up again. She did this at least 5 times (with me holding on to her the whole time).


After everyone left, she was still looking... We were inside the house, outside, and in the car. It was also warm out. This went on for almost 2 hours. I tried twice to get her inside (there are 4 steps to go up). She would have no part of that. She stopped at the bottom of the steps and would not budge. It was 6:00. Finally, I was able to force her to go up the steps. Again, she wasn't happy.


When I said something to my brother about what happened outside, his response was, "Aww, She doesn't know what she is doing." Then when I said I could not get her inside [I was really afraid we would be sitting outside for several hours in the heat.] My brother then told me that I needed to calm down, to which I said, "Easy for you to say." He said, "I've done it before." Um. No you haven't. He wasn't (and couldn't) walk as I did with Mom, around the house, inside and out, down her hill and back up. He can't handle taking Mom to the bathroom because he gets out of breath and has to get his oxygen.


I also don't believe it is that Mom doesn't exactly know what she is doing. She certainly knows what she wants; and she was always one to do what she wanted. She just didn't want to do what I wanted her to do. What she doesn't understand is why it's time to go inside. (She certainly can't be left outside by herself.) She thinks she can do what she used to do. She cannot be reasoned with.


I gave Mom Lorazepam at 4:30, but even when I left at 7, she was not sedated... She does seem to get worked up like this when some people visit. She always seems to think more people are coming.


My question though, is how do I get Mom to go inside (or even do something) when she doesn't want to do it? I have tried talking calmly. It doesn't matter. I find myself getting frustrated. It is worse than dealing with a child because you can at least pick up a child, and for the most part you can reason with them. Maybe someone can give me some suggestions??

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.
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Reply to LindaJane
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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!
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Reply to BarbBrooklyn
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Mapotter Jul 20, 2018
Thank you, Barb. I did watch one Teepa Snow video (from link provided by someone on the post). When I have time, I will check out more of them to see if I can find something that relates to my problem.

Mom's behavior is not that unusual and the hospice nurse says she doesn't have symptoms of a UTI (urine appears and odor). Plus, the nurse would have to do a straight catheter to get a sample, and that's not going to happen. The one and only time the nurse did that, Mom was not compliant.

I thought this morning that she was having a TIA (she actually may have had one). When she got up, she was leaning to the right when walking and sitting. She was very confused (no more than usual, though, I guess), and went to bed twice and slept for a few hours. Again, hospice is not going to do anything anyway if she had one.... Right now, she is sitting in her chair and is alert.
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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.
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Reply to Grandma1954
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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.
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Reply to Jasmina
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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.
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Reply to Ahmijoy
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Mapotter Jul 21, 2018
Thank you. I did try telling Mom that dinner was ready, or 'let's go see Charles'... But, she was hell bent on staying outside for some reason.... I would let her sit for a few minutes, then tried again....

With Mom's aphasia, 99% of what she says makes no sense.... So, along with that and not being able to reason with her... there is no way to know if she even understands.
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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?
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Mapotter Jul 21, 2018
Thank you.

I tried telling Mom that it was time to eat. I also said 'let's go inside and see Charles.' We would sit down for a few minutes and I'd try again. Maybe I just need to not be so impatient and expect to stay outside for endless hours until she is ready... :-/ If I could go in another door, maybe that would have helped --by changing the routine. But, the first front porch step is steeper than normal and there are no railings. The last two times (that same day) I tried to get her up that step, she almost fell backwards. So, I decided that was not a good idea anymore... I couldn't leave her outside because she wouldn't stay in the chair (even if I command her to do so) and would get up and fall.

She has always been independent and done what she wanted to do (without help). My father has been gone for almost 40 years. So, for that long, Mom has been on her own. Now, she needs help (but her mind thinks she doesn't). Several times when she would start to get up from her chair (going to look for the baby...), she would motion and tell me that she can do it. (Because of her aphasia, 99% of what she says never makes sense, but that did...) I always tell her that she can't walk by herself, but she doesn't understand. She'd walk 3 steps and fall... A few months ago, she got 5 stitches in her head... Since then, I have not be able to leave her alone.

I know what you are saying about never being able to predict what is going to happen. Every day is different.

That sounds like a good strategy with the car. I couldn't leave Mom's side in order to do that, though.
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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.
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Reply to maggiebea
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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.
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Reply to Mpisz428
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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.
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Reply to Teri4077
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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.
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