I need some input on a problem I have been having with my mom.

First some background.

Just over two years ago I moved my mom in with my family right next door to her house because she just wasn't able to care for herself anymore. That was half the problem. The other half was that a pipe had broken under the basement floor and water had been seeping there for a long time causing a major mold problem. In order to get rid of the mold we had to take the finished basement right back to the bare walls. We thought that while we were doing this work we would just renovate the upstairs as well and bring it up to 2009 from the 1960's to get it ready to sell.

I can't let my mom ever go back into her house because she can't cope with any change at all. Never has been able too. She has temper tantrums and catastrophic reactions when ever the topic of living in her house is brought up. This necessitated her starting on aricept and ebixa (Namenda) which have helped considerably but she still has major hallucinations....which brings me to the problem today.

Every time someone goes into the two rooms that she occupies on the main floor of my house (a sitting room and a bedroom furnished with all of her things) she tells them that I told her (woke her up in the middle of the night to tell her) that she has two rooms and she is to stay IN them and stay OUT of my way. She also tells people this on the phone and some of them have believed her.

I would never tell her that and would like her to move around the house more. She sits too much.
I was short of patience today after another night of not enough sleep and I made a little sign that says
"N... did NOT (in red) tell you that you had to stay in your two rooms".
I told her to keep it on her desk to remind her. She turned it print down and swears I told her that.

I know it was a hallucination but is there any way to convince her that I did not say it.
I'm afraid that my little sign is going to back fire on me and just serve to keep her reminded and angry.

My grandmothers and my dad never had hallucinations that left them angry and hateful towards me so I have no experience with this type of behavior.
I welcome any thought or suggestions.
northernlights

Hi NL! I am sorry you are having this problwm, with your Mom. I am kind of the last person that has any advice for you, but never fear, OTHERS will be along shortly. My Mom is really sweet, and although she did go through a beligerent 'stage' she needs so much help now, & knows it, so is more like a little girl, and appreciates the help. I also don't live with her full-time, like you do, so like apples & oranges, but we will admit losing our tempers from time to time, and feel awful about it, but heck, we are only human.

Contrary to the viscious rumor running around, that we are more Saints, then Sinners!

I am never one to say, drugs, drugs, drugs, BUT, when a patient or Loved One gets to this stage of hullicianting, or even dangerously angry, even violent, medication seems to be the only way to go. And it isn't one stop shopping, everyone seems to have to start out on a low dose of something, and just through trial & error (You'll know, immediately) you'll find which one works best for her.

The type of medications are seroquel (spelling) and even haldol, I don't recommend, and what was the one Johanna C swore was like a miracle with her Mother? Namanda? (Spelling?) By the way, what ever happened to Johanna C?

Anyway, like I said, others will come along shortly, and be of more help. We lost two BELOVED patients this week, and am afraid we have been stuck on thier threads, trying to be supportive & console them.

Well, I would suggest asking the doctor for something for the hallucinations. Beyond that, as far as trying to convince an AD patient of anything, is pretty much a lost cause. Even if you can get her to believe it one minute, she will probably change her mind the next. You just may be stuck with this delusion for awhile. Deep breaths sweetie, deep breaths.

Thanks for your answers today. I know it has been a rough week on this forum and I've been keeping everyone in my prayers.
Lori, I've taken so many deep breaths today I'm in danger of hyperventilating!!!
My mom has been on a plateau for awhile and today I think she took a nosedive to the next level. I have never seen her look so out of it. We have also spent most of the day looking for things that she has misplaced. Just shows me that I must get more stuff out of her rooms so there isn't so much to move around and lose.
I called the Dr. today and they will call back with an appointment on Monday morning just to have her checked over and talk about trying some new meds.
Thanks again. Have a good weekend.
northernlights

Hi Northernlights,

I'm sorry you are having to go through this. My mom went through it pretty severely, it was rough and like BigSky and Lori said, there is no talking them out of what they believe to be true. We tried to redirect which usually didn't work for my mom or if it did it only lasted a minute or so, but for some it does work. I finally went to the drugs with her, and like BigSky said so well, you really have to play the trial and error game. We ended up with Seroquel, pretty high doses, Depakote, which is not usually used for AD but was recommended by a nurse who works with AD patients, was the first drug that made a difference. Recently we added an anti-depressant which has made a big difference. But what made a huge difference was Aricept and Namenda together, wow, shocking difference for us, but for many it doesn't, so....

Just do your best to pacify her and realize that there is no reasoning with her. It is definitely extremely frustrating and don't worry about what she tells others, just explain to them if you can and realize it will keep happening. You wouldn't believe the things my mom said about me!!!

You take care and hang in there, sounds like you are doing a good job.

~Kelly~

Funny, my MIL was saying the same thing. We built a kind of two family house, not separated, but with kitchen , living , dining that we'd all use on the first floor, along with my in-law's bedroom and a Japanese tatami room because they'd be bringing the family altar with them when they moved. They had a full bathroom downstairs with all the handrails etc we thought they'd need. Our room, son's room, family room and DH's office were upstairs. "So, when I move here I'll have to stay in those two rooms all the time?" "So-you're going to hide the old people. Ashamed of us?" FIL understood (funny because he got AD first) but MIL did not. Is it because they once had a whole house to themselves that they don't understand the concept of sharing space? When we tell them 'This is your room' they think that 'that's it' as far as their space goes? I don't know what it is but it was frustrating for us too.

A thought just comes to mind. Maybe it is like the terrible twos? They regress back so far, I think Mom is about "6" (Acts like she is anyway?) But she has gotten a little possesive, like about her old sewing machine (which is a nice old singer feather-weight) and a House, my sisters lives in. She says they are "MINE!" Whoa! O.K. cool your jets, no one is taking them away?

It's so hard sometimes, northernlights, we know. I'll never forget the expression on the physical therapist's face when I turned on the lamp. "My daughter stole that lamp. I saw her. She stole it right from the store!" From then on (and on and on) all I had to do was think of that young girl's face and I had to laugh. In other words, if you can't distract Mom, distract yourself!

I'm wondering if your Mom might have a UTI. When my Mom takes a nosedive, that's the first thing I want ruled out. A physical problem can really throw behavior.

Just a thought here, but any way you could de-clutter her rooms by spreading some of her things throughout the rest of the house? Could make her SEE she lives in the 'whole' house and...you love it, want to share, etc. Might make you a thief though but worth a try if it gets her up and moving, looking around. I find the notes very helpful with my Mom. I think we all need visual, positive reinforcement.

It's a hard step to start new meds but you know her behavior best. When you find what works, it really is helpful for her, and you. In the meantime, I hope you can bring YOURSELF some comfort this weekend so you can get some sleep. You're probably going to need it. Hang in there!

Maybe you could change the sign into a positive reinforcement instead. Name things she can do in other rooms and list it like a daily schedule. TV with you for a couple of hours in one room. a simple puzzle in another room for another time slot, a snack in yet another, just things she likes to do. This is yet another phase of AD and hopefully she will snap out of it sooner than later. And if anyone sees the signage, it will show that you are trying to get her into other rooms with activites she might enjoy.

I love the way people like to start problems where there are none. I would have no problem asking these people if they would like to come and spend an afternoon with her while you run some errands. Let them see what this caregiving stuff is all about.

Well Northern, everyone has given you some really good suggestions, and I've been trying to think what else is left. I really do have to put my 2 cents in though.

I can only tell you that whats happening with your Mom seems to be pretty normal for them. And sometimes no amount of medication will stop it.

When my mom gets stuck on a subject, it seems she gets stuck there for days.

Mom: What did you do with my wedding rings?
Me: There in your drawer
Mom: oh, ok

This goes on for days.

Then its: Mom: Where did you HIDE my wedding rings
Me: I didn't hide them, there in your drawer
Mom: Well I can't find them
Me: Did you look?
Mom: Look for what?
Me: Your wedding rings
Mom: Who said I wanted my wedding rings! On for days again.

Another:

Mom: Did you see that?
Me: See what Mom?
Mom: that black thing that just flew across the floor.
Me: Nothing flew across the floor
Mom: Are you trying to make me think I'm crazy
Me: No mom, it must have been a shadow
Mom: Well thats stupid

Well, you get the drift. There is just no way you'll be able to convince her otherwise. If you try, it will just get you and her both so frustrated. And the more frustrated they get, the more miserable they are. Sometimes many will say that it's just best to agree with an AD patient with most things. I have a hard time agreeing with Mom with something that I'm being accused of, so I have a hard time doing that, but I've gotten better.

But you may just want to try it and see if she'll stop dwelling on the room thing. I notice the more I agree with Mom, the less she stays on a subject. But sometimes I can't take my own advice depending on what mood I'm in.

Wait a bit before you medicate her thinking it may be hallucinations. I just think that the less medicine they take, the better off they are. And remember, although your grandmothers and Dad did not act hateful and angry towards you, all AD patients are just not the same.

Pretend that this is a whole new thing for you, the AD, and handle Mom differently than you did the others. And as far as other people believing what she tells them, well they just don't get it and never will. Email them info on AD, maybe they need to be more informed. But most times unless you live with it, you just don't get it.

let us know how things are going.

Jackie

Oh, I know how you feel. Mom went through a phase of telling every doctor we had to see that she (meaning me) "yells at me." She would also call my brother to tell him all kinds of things I had supposedly done (yelled, wouldn't let her have coffee, etc.). I have also talked to her when she is at my brother's house and she claims they left her alone and went out and I can hear them in the background.

The only thing I can suggest is to encourage her to do things with you outside of those 2 rooms and hope she moves out of that phase (without ever talking about this fixation she has with not being able to leave her area). Usually when they give up one obsession, they develop another one or three obsessions. For a while we went through mom carrying her purse everywhere, including the bathroom. She is now carrying 2 Bonnie Bell Lip Smackers and her eyeglass case with her EVERYWHERE. I have to chase after these things all day and night because invariably she leaves 1 or more of those items on a counter somewhere and panics if she realizes she doesn't have her things.

I guess I didn't give any good suggestions - I don't really know what to tell you except "this too shall pass." Reasoning with her is only going to make you insane.

Thank you all for your words of wisdom and the personal stories. Isn't funny how bad things are when you are tired and then when you get some much needed rest you have an altogether different perspective.
I think my new motto must be "this too shall pass" and I won't even think of what is next.
I do think I will still check out the possibility of a uti on Monday.
Yesterday in the afternoon we spent an hour looking for hearing aids. I finally found them in her purse and she said 'Oh that's what we were looking for". She had been opening drawers and going through her closet not even knowing what she was looking for!!!!
I have made arrangements for my daughter to take my mom out for a couple of hours this week and I'm going to clear the excess stuff out of her rooms so that there is so much less to lose.
Last night after my mom went to bed I brought a few of her things out to the living room and this morning right after breakfast she gathered them all up and took them back to her room. I told her she could leave her book out here and read in the sun but she mumbled no no and took them all back. The note I left on her table is gone too so I won't try to fight it anymore....just go with the flow.
Take care everyone and have a nice weekend.
northernlights

Norhternlights:
Just wondering if your mom's hallucinations started BEFORE the Namenda, or after she began taking it? I ask this because of how Namenda affected my mom, and even the neuro wouldn't believe me until he did some research.
Several weeks after mom started taking Namenda, she began having hallucinations and agitation. I thought it was just the progression of the disease, but it kept getting worse, Finally, I put 2 and 2 together, and came up with 4! It took me two weeks to convince the neuro to discontinue the Namenda, and we gradually weaned her off of it. Once the Namenda was out of her system, she had no more hallucinations or agitation.

The neuro finally said it was the right thing to do, and his research did show that Namenda does have this affect on some people with AD.

How are things going northernlights? We never had any problems with the namenda, but you can't go by how it affected others. Everyone reacts differently.
The only meds we had problems with was haldol (zombie) and ativan when taken three times a day. Once at bedtime worked but three times would make him sleep but he would be so restless even while sleeping that he couldn't be still. He only took it for a week and that was enough.
Bill had halllucinations but they only included his mother and a small boy (our son?) both deceased and his brother (still living) spent a lot of time here. I never saw his brother but Bill did. Seeing these three didn't bother him so I didn't let it bother me. The only ones that bothered Bill was "those guys". I was always having to convince him that "those guys" couldn't get in the house.
When I stop to think about it, he stopped seeing all of them the last few months. Then he saw his dad, for the first time, two days before he died. Guess Dad just came to take him home.

Hi Everyone, I got my mom tested for a UTI and there wasn't one so I guess this change in her is just the natural progression of the disease. The Dr. always wants me to wait a month before we start any new medication when there is a new behavior problem. I guess he just wants to be sure the behavior is going to continue and that I may decide I can live with it too.

My mom has had delusions for over two years and long before she started on aricept or ebixa (namenda) so I don't think they have added to the problem. She is actually much more pleasant on the ebixa than before. Almost all the delusions have got to do with me saying very mean things to her. I think that's why it bothers me so much. I have always treated my mom with the utmost respect and always try to do what would make her happy.

An example of this just happened on the weekend. My brother was passing through on his way to a conference in Toronto. He lives in another province so we don't see him often. He came for two hours AFTER supper and my mom actually went to bed while he was here. On Sunday my mom was angry because I didn't invite him to stay for supper so she could have a longer visit with him. She was on the phone again telling my aunt this story!!!! It just makes me want to scream but I'm trying to let it go.
crella, It's funny that your MIL says the same things. Why do they think we want to throw them away or hide them when we have taken the trouble to move them in with us.
They certainly do think and act like 6 year olds but I prefer it to the way my mom was a year ago. She acted just like a teenager and spent hours in front of the mirror moaning about wrinkles and her hair.

I sure wish I could just stop a med and have this go away but after reading your posts I know this is "normal" and expected so will just have to deal with it.
Snick, I did make a list of what she could do in other rooms and I found it shredded in her garbage!! I think I will stop fighting it and just make sure she gets up and walks around every hour.

My daughter came on Monday and took my mom out for an hour and I went through her room with a garbage bag and actually filled the whole bag with scrap paper and other useless things that were just adding to the clutter. It's much better now. I also took out all the clothes that were too big or that she hasn't worn in the two years since she moved in here. Just doing that made me feel better.

Joyce, The day before my dad passed away he started talking to his mother. She had passed away with AD 20 years before. He smiled and talked to her until just an hour or so before he passed away. In his last hour he spoke to each of my children and called my boys the three musketeers. He hadn't know them for months and hadn't used the nickname for a long time either. I'm so glad that he knew us for a moment so we could say good-bye. When he passed he looked years younger and peaceful.

Thanks again for your replies.
northernlights