Hallucinations vs. Memory Loss

I agree. You MUST have UTI ruled-out. Learned this from experience the hard way. I believe NO ONE should be diagnosed with dimentia/alzheimer's until a UTI is ruled out. Unless a physician is an elder-care specialist, I believe they just don't think/know about this. Our mom has had a few UTI's, and with no symptoms (no fever, no chills), etc. But with any sudden onset of altered behavior, it just has to be ruled out!! Prescribed antibiotics and back to her "normal" (no more hallucinations) within 24 hours. Now, in discussing this with her (thankfully) Great physician (who has an afinity for the elderly) we have her on a daily low-dose antibiotic to hopefully stave off any more UTI's. Out mom is not ambulatory, therefore the constant sitting and inability to move around subjects her to the UTI's. It's not an end-all-be-all, but just this KNOWLEDGE has kept us one step ahead. Good luck!

What do you do when you have a parent who refuses to go to the doctor or take any medications. My sister and I decided we would just make the doctor appointment and just take her there without her knowing. We couldn't get her into the office without her kicking, biting or hitting us .When we got her in the office she was yelling, swearing and telling the office help and doctor so loud that my sister and i need to go to the doctor cause were so fat. Yes we need to loose a little weight, but by no means are we fat. Who talks that way about your kids? Just horrible. My sister is crying so hard. It was a horrible scene. She kept repeating this the whole time we were there. The doctor found out she has many things wrong with her, but she tells us the doctor is crazy and doesn't know what he is talking about. Her thyroid is so low and we have our mothers thyroid pills because if we kept them with her she would throw them out. Your suppose to take thyroid pills in the morning before you eat and she will not take them. What are we to do? We can't force her to take them. We've tried everything and nothing works. We've tried talking with her, but it's like talking to a little kid. So then we thought when we make her food we will grind the pill and put it in her food. Do you know now she won't eat our food because she says we are putting powder in her food. How does she know that? We grind and mix it well. She blames us for everything. My Mom also changed her face cream and now her face is bright red. Obviously some ingredient in the cream does not agree with her, but she tells my sister it his her fault that her face is bright red cause my sister puts powder in her food. She tells my sister that she is going to get into trouble and something is going to happen to her cause of all the horrible things my sister supposedly does to her and my sister has done nothing but try so hard to help our Mother. Our Mother is putting so much stress on us. We just don't know what to do anymore. We Love our Mother, but we just don't like her anymore. She has to be the meanest person I know, but she kinda was always that way even before dementia. We think she has signs of Altzheimers cause she doesn't now remember some people anymore. Our Mother should be on all kinds of medication, but we can't get them down her so were afraid she will just end up dying. We are at a loss at what the next step is. She refuses to move out of her huge house that has a pool. The house is ridiculous. Way to much work, but she won't leave it. She is argumentative in every issue and even before dementia was always a difficult person to deal with, but now it's way worst. There are times my Sister and I just want to walk away from her and just give up and let her figure things out, but we know we can't and she can't figure anything out herself anymore. Were so tired of crying and being crabby. She does this to us and always has. We just can't take it anymore. We sound horrible but that's just the way we feel.

I so understand what you are saying! Before we began this journey of what we now know is dementia, my husband would refuse to go to the doctors...he had a psychotic episode two in a row, his daughters decided to keep him in home and medicate with doctors approval....haldol, xanax, whatever! After 3 days they could not take it any longer and had him placed into a hospital by ambulance...He is non ambulatory ...he was found to have had a stroke (a month later he was finally diagnosed with vascular dementia)...he had gotten to the point of not wanting to take meds etc....claiming all sorts of untrue things, horrible......Well, how do you get someone to the hospital if they won't go and have not been diagnosed to be unsound??? I have no idea...someone must have an answer for you......I would think you need to have her commited to find what is wrong with her or she may hurt herself and you and your sister would feel horrible! She may have always been a horrible person and that probably won't change, but with proper meds she may be managable! I feel so sorry for you both..and for your mom....It's a horrible time for you all...Bless you

nacho52, I know what you mean, it's so hard to know the right thing to do or say. My sister and I leave our mom, thinking what a miserable person she is. She will take her meds. We tell her it will help her brain because she realizes something is wrong. She lives w/ our dad, there is no way she could live by herself.
On top of regular meds. I have been corresponding w/ a Homeopath by email. I've tried a few Homeopathic remedies. It's hard to find the right one....It would be better to see one in person. It's hard to describe and write everything down. They are quite expensive which is another problem. We can't afford that and Insurance doesn't cover integrative medicine.....

From reading several of the comments, I'd suggest reading about Dementia with Lewy Bodies. The Lewy Body Dementia Association website (www.lbda.org) contains a wealth of information about this disease. BTW, it's the second most common form of dementia, after Alzheimer's. And it can co-exist with Alz or other forms of dementia.
You may find its symptoms fit several of the writer's loved ones.

She may not have Alz. There are other types of dementia but in the US it's all about Alz. My mom has Lewy Body Dementia - different part of the brain. She too seems perfectly normal and can be quite lucid on a short-term basis. If you have the usual 2 -3 minute conversation with her (which is what most do with the elderly) it all seems well. She know's current events and can answer most questions correctly. But go beyond that, and it is SCARY. She is beyond negative - she is the type that always sees the glass half empty and it has a crack in it.

She has "false beliefs" that are 100% real to her and you cannot convince her that things aren't happening. She was constantly getting robbed in her IL apt, people were coming in and using her apt for meetings, people were trying to become her, someone was stealing a shoe, a sock, the pink hair curlers.
She would go into a frenzy and hide stuff - like take the batteries out of flashlights and put stuff in there - then get all upset because she was robbed. She was robbed of dozens of travelers checks, which she would put at the bottom of Kleenex boxes to hide. You could not convince her that she did it.

Maybe 4 years ago it would be every few months that something significant would happen then it got to be every few days about 6 months ago that she believed she was robbed, or have a hallucination (cats & rabbits) or see the floor with a patterns that move.

This is all part of her Lewy Body dementia and it would be episodic. So for weeks everything was fine and then a problem. She would call the police and tell them to arrest one of the other residents because she stole from her. But just looking at her all seemed OK: she can get dressed, make breakfast, go shopping, exercise classes. Her gerontologist took a wait & build approach, taking her off the multitude of med's her internist had her inappropriatley on and getting her down to 2 meds. Every 6 weeks she'd see him and take a minimental and clock drawing. Then last Nov at her visit she started telling him the usual I've been robbed and then told him that they were breaking into her apt to poison her food. He looked at me and said, it's time for long term care.

Her doc said the thefts are a way for her to rationalize her confusion and dementia. "It cannot be my fault that XYZ happened, it must be that someone did this to me"

She's in LTC and things are better - or as elizaethgrace said
" a new phase" - she's not getting robbed and everyone's food is being poisoned (LMAO!). She is much calmer than when she was in IL - I think a big part of it is that her med's are getting into her system on a strict schedule and that she see folks who are physically in worse shape. The rabbit has been there but it doesn't seem to bother her. To this day, her long and mid-term memory are still pretty good but short-term is shot.

Look into Lewy Body - your mom might have this. If it seems to fit, please try to find a gerontologist rather than a GP or family medicine or general internist to monitor her care. Dementia
is long-term and it doesn't get better, so finding a doc who understands the different types really helps. Good luck.

igloo 572, We have been thinking it may be Lewy Body for out mom. How is that diagnosed? Also, I was wondering if she lived on her own before LTC? Our problem is going to get her to move away from our dad who she is sooooo attached to. It is getting scary that he is the full time care giver. My sister and I are there to help fairly often and talk to them on the phone many times a day. It seems like when she is out of her environment she becomes more confused. It sounds like your moms transition was fairly easy......

rden - you can't know it's Lewy Body for sure without an autopsy.Nice, huh! This is long so get a cup of coffee.That being said there are hallmarks for it:

1. visual hallucinations - animals in particular. For us, it was a cat. It was just there in her living room in her IL apt. Now when she told me, I assumed that since she was new to the building and had her door open to the hallway that it was a cat that belonged to one of her neighbors. I asked about but no kitty. Ignored it. Then about 4 months later it was back. Now when the cat is there, it doesn't cry or jump on your lap or beg for food. It just is there in the corner by the balcony door for a short period of time - maybe a morning. She wasn't scared or anything, all very matter of fact the cat is back and it is real and it isn't hers. Her apt is on the 3rd floor in the corner with no close trees so NO way it came in from the outside. No cats except on the ground floor and those weren't it. Then about 6 weeks later it was a rabbit - again dark and just there, not frightening or demanding, just there. She totally believes it is real and if you say it's not get's pretty mean about it.

Then she would see patterns, like instead of seeing the carpet she see's it at times as cobblestones. This affects her walking.
It's as if she is looking through a "cookie" - the cut out's used for lighting on films and commercials. The light is dappled -
light & shadow - you can tell she is hesitant on her footing. Now she told me that they had replaced all the floors in her building
and she couldn't walk to the elevator for a few days. Come to find out that never happened but this was her way to rationalize. She insisted it happened and wanted her meals delivered.

2. the shuffle - LBD tends to have them walk with this little shuffle all the time. Like they can't pick up their feet. Check her shoes, if their worn flat she's doing it. If you put her in anything with a heel, she'll loose her balance easily.

3. paranoia - My mom was being robbed - started out about every few months to almost daily. Totally had her stressed out
as she could not be convinced it wasn't happening. Then it went into people were trying to be her - assuming her identity.
People would steal her food out of her refrigerator or better yet steal it and then put poision in it and return it. According to her doc, the poison scenario is common and a huge problem because they won't eat or eat very little to keep from being poisioned. My mom dropped 12% of her body weight in 6 months, which was another reason to move to LTC.

All the while she appears totally capable and cognitive. She can get dressed, bathe, roll her hair, shop, do laundry, all those things you need to do in IL. But if you talked to her to any degree it was totally SCARY as she told you about all the things
that were stolen and moved from her apt or used and replaced.
You can tell she totally believes it.

But if you asked her how was a Holiday, she could tell you what school the kids came from to sing, who did send her a card
and what type of desserts they had that day. She knows who everybody is.

She had a internist who really evaluated her based on Alz - so she could easily pass the tests for that. That's why she was in IL rather than AL. Switched to a gerontologist in 2008 because her old MD moved out of the BCBS system. This really has made a difference as they practice as a group and really only see the advance elderly (over 85) so the fact that she is ambulatory and cognitive it is a given that she doesn't have ALZ and so they know there is going to be another type of dementia.

On retrospect, she probably has had it for 6 years, the false belief episodes would be about 3 - 6 months apart. It really has been the last 6 months that they occur almost daily. That's also why the move to LTC from IL.

She was living in her home of 50 years before IL. She basically was forced to move by me - it wasn't pretty but needed to be done for her safety and security. My dad died in the 1980's so she was living alone for almost 2 decades, although she had siblings and a boyfriend. There were paranoia stories since maybe 2000-2001 like they were going through her garbage, they were taking her clothes off the line, they would read her magazines and then put in in the mailbox. I found notes she wrote of people doing things, like her grandson hiding her toothbrush and mixing up her socks, the mailman took her meal deliveries. Her role within her family is that of a martyr so "they" have always been doing things to her. So things didn't seem to be extreme and she was functional in day to day. She is one of those that when you were out with her and ran into an old friend at Target, she could have a conversation on how she remembered your 1976 prom and be spot-on about it!

This is going to be really hard on your dad as he is probably going to be the one who is "doing' things to her and no matter what you cannot convince her he's not. Now a big problem could be that she accuses him of something, tells someone where it has to be reported & starts a whole chain of problems. You need to have her evaluated and diagnosed with dementia so that you can deal with this legally if problems come up.

If you haven't done DPOA, MPOA, guardianship and a will, you need to do it BEFORE she get's diagnosed in writing with dementia. Elder care attorney who practices in the county that they live in or have property in is best. If you do this after she is diagnosed, it could be viewed as invalid if anyone challenges how her care & finances are handled.

My mom filed a couple of police reports and wanted specific people @ her IL taken to jail for robbing her. After the 2nd time, the report read "resident believed she was robbed, resident has dementia as per XXXX, M.D. resident's family to be contacted regarding her beliefs". We were lucky as the police know the health care facility (has IL, AL & NH) and the community liasion came out so she wasn't the first but still.........

For us, the key was getting the gerontologist. Their approach is so different. For most doc's it is all about getting you well and fixed, their practice is based on that. With the advanced elderly that ain't happening, you can make life more comfortable or less stressful or less fearful but dementia is going to take over at some point.

The anger she directs at you all is a way for her to rationalize the changes in her brain. There are all sort of meds that can make them less fearful and be more in control. For my mom, Remeron - once a day about a hour before bed has been great. It reduces anxiety, increases her appetitite, and relaxes her so that she will sleep at least 6 hours. Now it takes up to 3 - 4 weeks to get in the system to work - that was a problem for us in that she would take it for a few months then decide not to take it as she should and would get manic and her false beliefs episode would be intense. Last Nov she felt that "they" had stolen her toilet paper and took everything out of the linen closet and opened every bar of soap, box of kleenex, etc. Busy the whole weekend. Luckily my cousin stopped to visit her and got things back in place. She called me from my mom's apt and I had her go and count out her pills. She hadn't taken them in 3 weeks. All this was snowballing that she needed another level of care. The good thing is that Lewy Body does keep them pretty day to day functional so she won't need skilled nursing but probably will be OK with community based long term care which she is in now and is lots cheaper.

If there is a medical school near you, they will have a gerontology dept that will have MD names and resources for you. There are a couple of Lewy Body trials going on now that if you are on the east coast your mom might be a candidate to be in. Good luck.

igloo572 your situation sounds so similar to mine. We've just come off a terrible week with my mother which is why havent been able to read these comments for a while. In the beginning she would have a bad episode once a year, then every six months, three months, every few weeks, for the past month we are having issues every few days. The issues are always the same: my father is stealing, she literally has lost thousands in cash and bonds, more in jewelry and this week her meds disappeared. My father is trying to kill her, first it was poison, now pushing her down the stairs. He has multiple girlfriends and illegitimate children. Which she says is why he is stealing to support them. I took her to the doctor yesterday and she finally unloaded all of this to him. So after years of me telling him something was not right he finally saw it himself-I think he was shocked. But like your mother, she sounds perfectly rational when she tells the tales. If I was not there the Dr. would have thought she was telling the truth. She takes care of herself, dresses well, and is put together. She showers, brushes her teeth, cleans the house etc. There is no other deterrioration except for the crazy accusations. What meds was your mom put on for the LewyBody and do you know how it was diagnosed. There is no way my mom is leaving her house so any info on how to manage this would be helpful. Yes, we ruled out the UTI. Thanks! rham

There is no definitive test for LBD. They can do a brain scan and it will show shrinkage but that is common in all elderly. it's
really more behavior that diagnosis it. Most MD's will not put down LBD but just dementia as the definitive test is done on brain tissue during an autopsy.

I'm real OCD on doing a notebook with all the important info in it on her: Medical - re prescriptions, MD visits and notes; financial; behavioral - date and what the episode was about.Your mom sounds like there will be a guardianship issue in the future with her. You need documentation for that and the notebook can detail that. For me, helped keep my sanity.

What meds is she on and does she take them? You need to count them out and monitor it. Most drugs really need several weeks to titer-up in your body to work properly, so you need to see if mom is doing this correctly. She might have meds that would be helping her but isn't taking them correctly. So you might want to do this first.

Also check to see what other drugs and over-the -counter are about that she could be taking and causing problems with her prescriptions. Throw everything old away, just too bad if she doesn't like it.

There are ALZ drugs like Aricept and Excelon. Aricept is tough on the stomach and seems to have a metallic taste so that is probably a lost cause. Excelon (a patch) requires it be moved so unless she's compliant, this ain't gonna work either. These
are supposed to increase memory function. Aricept was tried for 2 mos but was so hard on her tummy it was stopped.

IMHO I really like the old-school happiness (anti-depressant) drugs like Xanax and Valium for a short-term trial to see if it lessens her fears.

Sounds like all this is fear based. This is what it is for my mom.
We did valium for 4 months when she went from her old internist to the gerontologist, he took her off all the drugs she was on over a 3 month period then 1 mo or so with just valium and then onto Remeron - a tricyclic antidepressant & another old-school style drug. Which she is on now. If she has dizzy spells then she has a vertigo med that she gets for a minimum of 3 days. The great thing about LTC is that she is getting this regularly and consistently. Huge difference.

There are other anti-anxiety meds out there, like the newer SSRI's like Paxil, Zoloft.

Whatever her doc prescribes she needs to be super consistent in taking it as coming off of them can really be bad. For my mom taking Remeron inconsistently was worse that not taking it as this would trigger an episode to be even more manic.

One thing I was surprised about was the degree that the elderly get dehydrated and it's effects. The gerontologist group has a hospital affiliation that has a short-term and long-term units. The short term constantly is filled with this scenario:
"85 yr old lives alone, according to neighbors is very fit and does for themselves, drives, church, shops, yesterday
seemed dazed & confused so EMS called & admitted to hospital. After 3 or 4 days seems fine and discharged"
They just aren't getting enough water (not coffee or beer but just water) so not enough pee and filtering of waste. It builds till they get so dehydrated they are completely confused. Then when they get checked in the first thing is they get fluids IV and sedated so they get sleep/rest/water/pee/sleep..... and after 3 days are totally good to go home. So see if you parents are really drinking enough.

Once you get your mom to be more relaxed she'll feel more in control and less fearful. She may just feel overwhelmed between everything in the house, and your dad and you all.
Good luck.

Igloo572 thanks this info helps a lot. We recently got power of attorney and this week I went to the dr with my mother. I was surprised that she really doesn't take a lot of med. She is on high blood pressure meds and aricept for the memory and some vitamins. Of course, my father had stolen all the meds because he is trying to kill her! But she did find her HTN med in her coat pocket while we were there. Of course she still thought my father had stolen the meds. Anyway the Dr. added an antidepressant and an anti anxiety. The goal being to try to calm her down and get her to sleep better. I am hoping we see some changes in a few weeks. I will keep an eye on the fluid, I am sure she is not drinking enough. Thank you for your advice! rham

I know this posted discussion goes back a while but if it's not too late, I'd like to add something new that just came up for us... My mom is under Hospice care and has been on Tramadol for pain for the last year and has had hallucinations for the last year. We always thought the hallucinations were caused by the "psyche" meds like aricept, namenda and recently ativan and just the fact that Mom has alzheimers. Now the doctor suggested we stop the tramadol, which we did about 10 days ago, and switch to liquid tylenol. My mother's horrible hallucinations seem to have stopped and she seems to have had a complete turnaround mentally - at least 80%. No non-stop talking and screaming in the middle of the night. She still thinks she sees bugs, etc., but she has cataracts which I attibute that to. She seems to have come out of a total fog and I'm totally shocked that the tramadol - a pain med - could have been causing the hallucinations. It's only been a few days that we've seen the big change but even her alzheimers seems to have gotten ridiculously better and I've even stopped giving her the ativan. She's hasn't really asked for anything very specific the last several months and now she's suddenly asking me to pick up certain things she likes from the grocery store, asking when are we going out, asking how people are by name, wanting to call her old friends on the phone, telling me to close the blinds, wanting me to turn the TV channel to her programs, asking what's for lunch, saying she's hungry, telling me her diaper needs to be changed (she has NEVER done that), telling me to get off the computer and go to bed. I'm in shock. We may have created a monster.......lol Seriously, she's back to her old self - or at least to where she was a couple years ago. She's even sitting up straight and not needing pillows all around her to prop her up. I know everyone reacts to different drugs in different ways but I sure hope this information helps someone else. Praise God, I think we have a miracle going on here!!

why was your mom on tramadol? She has pain? but the tylenol works for that pain? Well, so happy that your mom has made such a remarkable turnabout....Good for you all....!

Thank you for posting. I am going through the same problems with my Mother. Its so nice to read others who experience the same loss as me. God Bless you all! For med's she has her Citralopram and Ativan. We've tried other things, but nothing really works definatively. Part of aging I guess, but the hallucinations scare her. According to several doctors (including a neurologist), none of her medications would cause hallucinations... but she has them regardless. Her home health therapy guy says he has several patients with this problem. So.. its normal I guess.

That is wonderful news about your mom. Getting the right meds in the right dosages is such a balancing act. And then, of course, any change in their physical condition and you have to start over with figuring it out.

Thankfully, we are in a peaceful place the last few weeks - it seems as though we are currently at the right combination for Mom to have peace. She's no longer fretful or trying to figure out what doctor she wants to go see today. :) Much of the past is lost to her and the future isn't worrying her - she's living in the moment and joining in activities and talking to people and smiling...and shopping! Anytime a vendor shows up in the lobby, she does too - with her credit card. If it makes her happy, it works for us!!

I have learned to be content in the day with her care. If we're having a good day - or even a good hour, just be thankful and try not to be overly concerned about the next crisis. Just like her right now - live in the moment.

Sloegin, my mom was on Tramadol for arthritis pain, osteoporosis, and bursitis in her shoulder. In the six months she has been with me she has NEVER complained of any pain so it seems that the Tramadol did work for that but also put her in a fog and caused hallucinations. (or maybe she was in too much of a fog to complain???) Now that we have switched to the liquid Tylenol she is just starting to complain about pain the last couple of days. Now I need to figure out if we just need more Tylenol or another pain med which I will monitor much more closely than I did the Tramadol. The transformation since taking her off the Tramadol has been nothing short of amazing. She is even feeding herself now.... which she has not been able to do since she's been here.

bpryoro1 - If I was you, I would not assume "it is normal". I would check out your mother's meds online to see what you can find out about them yourself and not totally trust what the doctors say about them. Even the best doctor can't be expected to remember every single side effect of every single drug and every interaction with different drugs. There is a website where you can list your mother's drugs to find out if there is any bad combinations but I'm sorry I can't think of the name of the website. I've seen it here on this website in someone's post but haven't been able to find it again. Maybe someone out there who is familiar with it would let you know. Take care and God Bless!!

Dear Michfla317,

Wow! You opened Pandoras box for me. I found several drug interaction sites out there doing a simple google search. I used MedScapes site. There were 6 major interactions found and 1 minor found. Not between the drugs I mentioned in my posting, but another one.

Thank you so much for the advice! I didn't know there were sites like that available. I'm going to discuss dropping or changing one of my Mother's medications with her PCP on Monday. It has several bad interactions with some of her HBP medications.

Thank you!

Word of advice for anyone that tries the drug interaction site: Add any OTC medications as well as Rx medications.