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janehill

Mom's not making sense

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There are so many things that it's tough to focus in on one.

For the most part, I'd describe it as a perpetual state of confusion. You'll ask her something or why she does something and she gives you a look of "huh?" on her face and then her response is illogical.

About an hour ago (at 5 AM ET), she called my name and I ran downstairs. She couldn't sit up in bed and I helped her (she has a handrail I built next to her bed to grab for stability). Anyway, her (electric)wheelchair was too much of a distance from the handrail, yet she was attempting to grab the handrail so she could get up. I said, "wait a minute, why is your chair so far away, how come you didn't pull it closer?" and she said, "I know, I kept sliding on the bed." I told her that her sliding on the bed had nothing to do with the distance between the wheelchair and the handrail - that I didn't understand why she didn't move the wheelchair closer (never mind why she didn't use the full sitting position on the bed to help her get up) and she was confused - couldn't really answer. Despite the distance, she tried to get up and I had to quickly move the chair closer. It would have been like getting into your car from 4 feet away.

But there are a ton of crazy events like this one and worse. (she's looked for a deer in the house and talks about strangers looming (who don't exist) or a "man wearing plaid pants who got in, standing against the hallway wall" who she was going to confront)

Some of the stuff she says is outright spooky; other things not so much, just illogical.

I don't know if this is from the meds or from brain involvement in the cancer.

Has anyone else experienced this and know why?

Thanks guys.

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Sorry about the troubles. :( ..

When Harry is dehydrated, he gets a little "confused", but also when he's on a lot of medication, even if it's just a bunch of antibiotics.

Are there any figurines or little statues (like nic-nacs) in your Mom's room? I ask that because my Mom and I lived alone when I was young, and she worked until 11 pm, so we got home late at night.

She had bought a statue of a bull fighter, and sat it on the TV. When we came home one night, the street light was shining into the house, and making it look like a man was standing in our living room with a cape on! Scared us to death! It took us a few minutes to figure out the shadow was just from the big bull fighter figurine!

Anyway, just a thought! Your mom may be seeing shadows of things....?

I hope things start looking up for you.

Nova

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My main thought was already touched on by Nova. Dehydration can cause so many things to go wrong and severe confusion is definitely one of them. Give her plenty of liquids and call her doctor.

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Thanks guys.

I doubt it's dehydration; she drinks a good amount of fluids so I don't think it's that - and she's definitely eating okay. Hmm.....

As for the figurines, that was pretty funny and I could see how a shadow could cast an ominous figure on a wall. :lol:

But she said she saw him walk down a few last steps with my cat alongside him and that he coughed (like to clear his throat) and she looked at him and he quickly pushed his body against the wall of my entrance hallway so she couldn't then see him. She said she was waiting for me to get back from the store and couldn't call me to warn me that he was right inside the door because he might understand her. I told her that there is no way a stranger can be in my house and her not know it because I have a little dog (a Pekingese) that is the best watch dog anyone can have. She has the biggest mouth in the world and she would become unhinged if there was someone in the house (much less a man - she hates men especially! :wink: ) and I told her to remember that my cats are afraid of strangers and that they'd run away and hide. No way my cat would calmly walk downstairs with a stranger because he'd be too busy tending to his heart attack.

There has been a lot of crazy talk. On Saturday she said someone lied to her on the phone and told her it was Saturday. I said, Well it is Saturday. Then she said, "no, it can't be because tomorrow is Sunday." I said, Well that's right, tomorrow is Sunday. And then she, "no, but a different type of Sunday." And then she gets exasperated and says to forget it - which I promptly do.

I didn't give her any more of the heavy narcotics on Saturday or Sunday, yet this morning she seemed just as wacky. So...I don't know if it's the meds. :?

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It could be involvement with the brain maybe.

Mom was never quite confused like this, she did say a couple of random things when she was very tired.

Out of the blue she was sleeping she said "Nick, do you like hot dogs?" I answered and she said "ahha" and went back to sleep.

I can imagine how jarring this is for you...I'm very sorry.

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how about her oxygen level? my husband has had problems a couple of times with "seeing things" and it seems to be related to when he isnt getting enough oxygen....

one day he said he had to hurry up and get ready and I asked him why and he said b/c he had to go to work...I told him it was Saturday and he said okay (it WAS actually a Saturday)....a few times he thought he was smoking a cigarette and I would watch him "put it out" or do other things with stuff that wasnt there... he handed me these things a couple of times... I just "took" them....

most of the time we dont have this....it has just been a couple of isolated incidences...usually related to oxygen or meds (they changed his meds a couple of times and ea time there was a bad reaction!)

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Hey, maybe it is the oxygen. She is on the highest level on the machine (I think 3 liters?) and will often complain of not being able to breathe. I give her the heavier narcotic (don't recall the name - something similar to Roxynal) because the hospice nurse said it helps with the sensation of not being able to breathe and it definitely has that effect on her. But I know the reality is that she's still not getting the oxygen she needs and yet, there's no real solution to that.

Wow, thanks! I hadn't even considered that.

Honestly, if craziness is the worst of it, this will be a piece of cake going forward. And it takes the edge off of her nastiness, thank goodness!

For whatever reason I just go with it and ignore it. If she insists, I tell her that she's not thinking clearly and she usually agrees.

Thanks all!

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Hi

Ger got really confused like this - I would get a brain ct done again although I see all was clear on May 10th. This happened to Gerald when he got radiation on his chest to relieve the pain. They did that and then his pills were too strong. He was on 72mg hydromorphone per day - I cut him back to 18mg on my own. However about a month after that it was back to the same state again - but this time off balance too as well as hallucinating and confused alot of the time. His single brain met had doubled in size even though he had had whole brain radiation. Cancer sucks. Hope that you get this problem resolved and find out what is causing it.

All the best, Heather

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Jane,

Sorry to hear this is getting worse. Is your Mom on morphine? I know that both of my parents had hallucinations during the last days of their lives.

For my Mom it was spiders on the walls, which I stood on the couch and killed for her. For my Dad it was shadowy birds flying around his room. This is pretty common to have hallucinations while on some of the heavy duty pain killers. My Mom was on a morphine drip and my Dad's body was shutting down with liver cancer. He was filling up with ammonia because the organs weren't processing the IV fluid correctly. Many different body processes shutting down can cause hallucinations. Maybe it is a combination of drugs, hydration, and oxygen. Just a thought.

My best to you,

Welthy

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We just blamed Mom's 'goofiness' (asking the same question over and over, forgetting when you had told her things) on chemo-brain. The kids and I just learned to answer the same questions multiple times. I would certainly bring this up with her Dr. if you are concerned. He/she might tweak the meds a bit, or have other ideas.

Keep us posted--hope this works itself out soon.

Kelly

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Hi guys!

Let me start out by saying that in the past month, she's said a few odd things but was mostly lucid. Last Friday night I noticed a lot of irrational stuff and since then it's like a freight train. In the past 72 hours she's gone from "not right" to have officially left the reservation.

Tonight I came home and found her in her wheelchair in the kitchen with the cell phone and house phone and two phone books strewn about. She said she tried to call me and my aunt but couldn't and I thought (stupidly) that something was wrong with the phone. Nope. She didn't remember the numbers (she's called us a million times each) and then she told me that she had wet herself a couple of times in bed and had almost fallen going to the bathroom.

I said, Okay mom, this is what we're going to do. I'm going to Walgreen's right now to buy adult diapers for you and I'm going to put it on you. Then I'm going to change your sheets (they weren't wet but I just wanted her to have fresh sheets) and put down your hospital pads and you are not to get up anymore. Can you wait here until I return (store 2 blocks away) and she nodded but mostly she has a very vacant stare.

I returned, did all of that, gave her an Ativan and gave her dinner and dessert (which she ate happily) and moved her wheelchair away from the bed - because I'm scared that she'll try to get into it and this way she can't reach it.

I don't know what's going on. The Ativan cannot be causing this. Otherwise she's on the Tessalon Pearls for the cough and Coumadin and sometimes Antivert. And she hasn't had any of the liquid stuff (don't remember what it's called but it's a morphine light version) since Friday night or Saturday morning.

She doesn't know numbers (even typed in HUGE font) - she'll transpose them and miss digits. I asked her what her telephone number at home is and she said 1-0-8-0. I said she was missing some numbers and she said that I was including the numbers in the front (I guess she meant the area code) and I said, you only gave me 4 numbers and there have to be 7 (Mind you, the 4 numbers she gave me have no connection to her telephone number). Then she said that the doctor called with a script for my cat and I needed to get it (another delusion). I told her I'd get it later (you just have to go with it). She can't remember my birthday or the names of my animals (that she has been saying clearly and often until Friday). Then she asked me, "are they going to cut me in half?" I said, "NO, who?" and she said, "at the hospital." Then she talked about a nursing home and that she won't see me and I said not to worry because she's not going to a nursing home and she sees me every day.

Lastly, she said I should ask the doctor to gather up a team of doctors to figure out what's wrong. I will just have to tell her that the doctor says this is normal and she'll be fine very soon. I don't know what else to say and I HATE TO LIE TO HER.

Whew! Sorry to lay that all on you guys but things have gotten radically more delusional and I do wonder if I should just take her off of the Ativan and cough meds and Coumadin cold turkey and see if she is more lucid then. (the only caveat to this is that I will NOT allow her to have pain and if she experiences the least bit, I'll give her whatever I have to to make it better - rather have her totally crazy than in pain).

Jane

PS: I'm holding it together super duper well - thanks all for your good wishes. She's actually let go of all that deep seated anger I've never seen her without and, true, I don't feel like it's my mom but she's pretty pleasant so I don't mind.

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You know that really does kinda sound like she may have had a TIA or a anyerism possibly... Im no expert but My grandfather had very similar symptoms of course he was not being treated for Cancer but I find it odd that they are not even considering something else may be going on

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how long has she been on ativan?

I had a major problem with my husband last week and I believe it all started with the Ativan...they told me to give one to him and then when some breathing etc got worse they told me to give him Haldol (both were in the hospice's "comfort pak")..well he got worse! much worse... he was screaming 1-2 times a minute and doing all the goofy stuff from before...I didnt get one minute of sleep the entire night...I called Hospice 4 times! unfortunately the 3rd time they had me INCREASE the Haldol...what did I know?

although I already had a feeling that that could be making things worse....

is Ativan new to her?...

I will be honest... my husband had a past of heavy drinking and when he was younger..drugs...

both of these can make treatment harder and cause bad reactions to drugs.... we totally believe that is what happened in our case... the ativan and the haldol reacted poorly with his past....

I do not know your mother and please dont think I am making accusations...i just wanted you to know this is what happened with us...and Ativan was one of the problems.....

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I also wondered about UTI or some other type of infection. My dad has been hospitalized a few times with severe cases of cellulitis and he got very looney! Also makes me suspicious since one of her hallucinations was about urinating.

Karen

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I hadn't thought about her oxygen level either, and that makes sense. (I'm storing that away in my own brain!)

Harry also has past addiction problems, drugs and alcohol, but for the last 10+ years, has been an active member of AA and NA. That's why he fought taking any sort of pain killers, etc., at first. We had to have a long discussion about "abusing" drugs, and using them responsibly when you have to. It DID make his tolerance to pain meds much higher though.

Anyway, to make a long story short, he's now on Ativan too, and hates it. Says it helps the nausea, but makes him feel "goofy", so maybe that's one drug to try and ease off of for a day or so, to see if her behavior changes any.....(with the doctor's "say-so", of course).

I'm sorry your mama is having to go thru this. I hate it for all of of us.

Take good care of yourself,

Nova

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Nova, the good thing about this group is that we're all dealing with so much of the same things and that really helps. I'm sending really good wishes your way!

Mom has refused all meds today and that's fine by me. When I came home from work she was about 25% better (if I can quantify it) and remembered some small things (my birth date, though she added a year onto my age :shock: ).

I just hope she remains calm so I can sleep tonight; I am soooo tired.

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I am glad to see that things are improving

the couple of days my husband had problems he too kind of laid off the meds for a bit...and like you I was fine with it...

and also like you..I got no sleep the nights there were problems... like last thursday.. no sleep AT ALL...I was worried when he was better the next night and I could get some sleep b/c I knew it would be a deeper sleep...and it was...luckily he was okay..

I say that b/c I get up every 2 hours and check on him...that particular night I went about 5-6!

those meds though can be more of a hinderance than a help that is for sure....

my husband has gotten to where he wont even take the new laxative they gave him b/c he is afraid of a reaction....

I truly hope you are able to rest tonight....

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Hi-

Hope your mom is doing better tonight. It could be any number of things, O2 level is probably it...my mom had been here several times and I know that it can be really scary. A couple of months back my mom was looking right at me and could not remember my name..started slurring her words and when asked to count from 1-10 skipped the 4 and 7 everytime...this time it was O2 deprivation. Before it was tumors--I would keep a log of meds, eats, liquids and sleep over the next few weeks and the times she is making no sense then report to the doc...for what it is worth my mom has never been on any meds but the chemo,megace and advil. She has never takin pain meds and still gets this way from time to time and her scans are clean.

Could it be that these times are right after she sleeps? It seems to be really hard for my mom to get her wits about her when she first wakes up-regardless of if it is morning or a nap...

Sending you prayers!

Melissa

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Well, bad night last night. She screamed for me at 2:30 AM and I ran downstairs frantically. She wanted to go to the bathroom and now refuses to just urinate in her diaper. She wants me to help her get to the bathroom no matter what the hour or how often.

I just deleted 4 paragraphs of the level of outright abuse mom has subjected me to in the 24 hours alone because it's just ugly and bad enough I'm living it.

One decision was made tonight by me. I will hire a live-in aide for her, no matter what the cost. She doesn't want the live-in because, and I quote, "I want you to do whatever has to be done 24 hours a day, not someone else." Not even remotely surprising to hear but painful all the same. Suffice it to say my mother views (and has been very frank all of my life about it) daughters as caregivers for their parents above all else - "it's their duty." Nice, huh?

Well, I interview the woman on Sunday at noon - please wish me luck, that the woman isn't frightened away.

I am trying so hard to keep my word to her that I would never put her into a nursing home (and she thinks she has it bad here - HA!) but it's getting very difficult to keep my word on that. But I'll still try.

Good night everyone!

I absolutely plan on having a wonderful report on Monday - that life is going to be much better!

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I am so very sorry to hear that your mom has begun her tirade of verbal abuse again. I wish I could say "It's the cancer talking," but having spoken with you in PM, we know this isn't the case. You have got to be physically and mentally spent. I think you have got to do what you need in order to survive this. I hope you know that we do understand here, and that we care and will help guide you when we can. I wished long ago that I were closer to you so I could help, because even though I don't know your mom, I do know about the pain and issues with independence from post-polio syndrome. Unfortunately it does sound as though she may have other things going on from the dementia-like behavior. I think it's hard for us to get to the point where we need to admit we're drowning, but you have reached that point, and I applaud you for recognizing it and reaching out for help. You are no less of a person because of it, and please don't let your mom try to convince you otherwise.

Many prayers being sent your way for better days ahead. I am thinking of you.

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Jane, I give you a lot of credit for realizing that you need help. I've seen from your posts how much you love your mom and how you want to be there for her, but you have to survive this disease too and you won't be any good to her if you don't get someone to help you.

I'm praying for that good report on Monday!

Susan

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Jane,

Your situation with your Mom is mirroring my own. My mom (diagnosed in 2005 with brain mets) started behaving the same exact way. She just turned 69 last month.

We hired an aide because she would try to get out of bed, walk, etc. on her own and would end up falling. We just couldn't leave her alone anymore. She started talking about "thieves" and other irrational things. She became incontinent and had to wear Depends about 3 months ago. She fought that so hard, but ended up using them.

Unfortunately, 2 weeks ago, Mom fell in the bathroom despite having an aide at her side and broke her hip. All the specialists agreed she HAD to have surgery to repair it.

Last week, she really started hallucinating - talked more about friends and family who were deceased, she saw our first dog we ever owned and said he had slept in her bed all night, among other things. Then she told me what a beautiful place she was going to.

She had asked me last week during a few rare moments of lucid thinking if there was anything she "had left to do" - and I said no, Mom, you've managed everything so well, and we are going to be okay because you made sure of that.

I believe that was the last conversation I will have with my Mom because over the weekend, she had a seizure in the hospital and is now in ICU on Dilantin and Decadron. Mom is not responsive except for a few minutes at a time, when she opens her eyes and looks at us, and then goes back to sleep.

The PET scan they did showed nothing new in the brain, but the CT scan did. It showed the occipital tumor has spread, despite several rounds of Gemzar. We are preparing ourselves for the worst as the nurses have told us she is declining rapidly.

Oddly enough, Mom is not requiring any oxygen but her respirations are very low. She is not able to eat, and I have to make the most difficult decisions this week.

She is only taking the Dilantin and Decadron, plus she was on Tylenol #3 twice per day. She has just never required any heavy pain medication, but I did throw a fit at the doctors after her hip surgery because they didn't leave standing orders for anything and she was so uncomfortable for 2 days. (That's another thread, though.)

I'll be thinking about you & praying for your mom, and everyone here.

God bless,

Sophie

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